The FDA announced on December 1, 2009 that Ampligen would not be approved at this time. They asked for new trial - larger, more expensive trials. This was a shocker. The FDA erected a very high bar for the dysfunctional folks at Hemispherx. Hemispherx will not get their feet off the ground this time. Ampligen is finished.
There is intention here - laser-like intention. The FDA does not want any acknowledgement that CFS might be a neuro-immune disorder - or a physiologial disorder of any kind. They are constitutionally allergic to any association with a physical illness. It is now painfully obvious that the FDA and the CDC will do anything within their power to disconnect any sense of "reason" from this illness. This is bad news for the sufferers of this disease.
Hemispherx is complicit in this absurd dance with the FDA, but it looks like it was all pre-ordained, no matter. Over the years Hemispherx has demonstrated an extremely poor ability to relate to any government agency - and this probably extends to anyone or anything. They have set themselves up for a whipping.
Still it is hard for me to believe this decision. It puts a beating on the entire CFS community. I was convinced that the present circumstance conspired in such a way that the FDA would have to approve Ampligen -or at least give it conditional approval. An objective analysis of the situation would lean towards this drug being approved, or partially approved.
How do I know that the FDA has gone out of their way to sandbag Ampligen and all those who might benefit from it? First is that the FDA is not as prissy as they make themselves out to be. They approve many insufficient and half-baked drugs and appliances, including some that are frighteningly dangerous. In such instances strict guidelines are set up. Second, there response is disingenuous and not believable. If what the FDA says about Hemispherx' trials is true, the FDA could have rejected Ampligen five minutes after the NDA was filed. There was no reason for the long delays - from Feb 24 to May 24 to whatever. They obviously waited until the announcement would do the most damage to the momentum of current CFS/ME research. The FDA wants to poison the air - and this has been successful in doing this. This announcement is a real downer.
Everyone knows that Ampligen is not the answer; everyone knows that it is not the silver bullet. But it might have been part of the answer. Efforts are ongoing to identify those patients who might benefit from Ampligen. Now we don't have to worry about that. It has been taken off the table as the only drug designed for CFS. Its rejection will go a long way towards other drug companies refraining from developing similar or new drugs to deal with this neuro-immune disease. The die is cast and nothing will ever be approved for CFS.
What does this tell us? It tells us to shy away from the U.S. government and their help. Change might be on the way, but it is not in CFS government research or sponsorship. It tells us that the only way forward is through private initiative and through doing what we can to support such efforts. It will be interesting to see if the CDC can derail the WPI efforts. Take notice: they are going to try.
Chris
Wednesday, December 2, 2009
Wednesday, November 4, 2009
ImmuKnow
The Patient Advocate has known about the ImmuKnow test from Viracor for several years. Here are some quotes from the ViraCor site:
“ImmuKnow is a noninvasive biomarker of immune function that assesses cellular immune status by detecting cell-mediated immunity (CMI) in adult immunosuppressed patients. It measures the concentration of adenosine triphosphate (ATP) released from CD4 cells following cell stimulation.”
“ImmuKnow is the first and only FDA-cleared blood test to measure the vitality of a patient's immune system.”
This means that the test is regulated and that it does as advertised. The ImmuKnow test takes a small sample of blood and exposes it to a proprietary reagent (made by Cylex) that stimulates the CD4 cells. ATP activity is measured in these CD4 cells. ViraCor has created a scale (<225 – weak immune response, 225-525 – moderate immune response and >525 – strong immune response) and this test is a measurement of immune function. The ImmuKnow test is used for tracking immune function in AIDS management and in transplant patients who take immunosuppressant drugs. It is being tested in diabetic patients undergoing Islet Cell transplant. At a CFS conference, Dr. Dharam Ablashi (see picture above) suggested using it for CFS. The PA is unaware of anyone with CFS actively doing it - except for his daughter. A number of CFS patients were given this test and their average number was 281. Further information on the ImmuKnow test is available at the ViraCor website. The ImmuKnow test is a quick and easy blood test that can be done through various labs, including Focus Diagnostics.
Ablashi’s study of 2005, using Dr. Daniel Peterson’s patient population, tested the functionality of the global T-cell response using an FDA cleared response for cell-mediated immunity assessment (Cylex Immune Function Assay, ImmuKnow) - and these cellular responses were compared to patients with HIV and immunosuppressed transplant patients. The ImmuKnow test was assessed based on the amount of ATP expressed in ng/ml. All three groups has median immune function that was not statistically different. The transplant patients averaged 259 ng/ml ATP, followed by HIV patients at 263 and CFS patients at 281. CFS patients showed consistency with both the transplant and HIV patients - with the majority of patients in the median zone, followed by patients in the low zone, with the smallest percentage in the strong zone. More can be read in Ablashi’s and Krueger’s book Human Herpesvirus-6.
Dr. Dale Guyer uses this test in his practice and has a positive feeling about it, believing that the numbers rise as the immune system becomes stronger. This Patient Advocate is not aware of other CFS doctors using this test. It is an easy blood test and relatively cheap and fast - $180. Whether it is useful or not, is anyone's guess.
Sunday, October 25, 2009
The Abstract and the Real
All this viral research and treatment is heady stuff, riddled with uncertainly. On a daily basis the Patient Advocate has to deal with much more mundane matters. There are some items that can be helpful and the PA will list some of them now, some of the things that have been useful to his daughter.
Oasis bedroom: (see Lisa Nagy)
Stair lift:
In order for my daughter to get outside, the Patient Advocate has installed a stair lift. The PA researched the subject on the internet and talked to a number of companies. He learned all about stair lifts and learned that they are very expensive. The PA bought one on Craig’s list in 2007 from a fellow who lived on the beautiful plateau above Red Wing, MN. This fellow's wife has MS and had recently been institutionalized. I asked this fellow if his wife had taken LDN and he said yes, but it had done nothing to halt her descent. In my search I discovered that many folks are trying to dump their stair lifts and the used price can be quite inexpensive, relatively speaking. I drove down to Red Wing, bought my two sons Red Wing boots, and picked up the stair lift. Back in St Paul, I installed the lift in a day or two, gleaning advice from a local distributor of the particular brand that I purchased. They were extremely helpful, especially in cutting it down to the right size. This job taught me one thing: I do not want to install stair lifts for a living. With this stair lift my daughter is able to easily go up and down the stairs as she wishes. A year later I ended up buying and installing another one for the stairs off her porch. This purchase and installation followed the pattern of the first one. I bought a used starlit - a different brand - off Craig’s list from a fellow in Robbinsdale, MN. His mother had passed away and he was moving on. His mobile home and motorcycle were sitting in his driveway, ready to take off to points unknown.
FIR (Far Infrared) sauna:
In doing the Acumen and Biolab mitochondrial tests (suggested by Dr. Myhill), information was revealed that indicated that use of a FIR sauna might be beneficial. The PA did some research on the subject and found that they too are very expensive. There are several kinds of FIR saunas: closets, domes, and blankets. The PA settled on getting a dome sauna. Noodling around the PA found a used FIR sauna - almost new - at Arrowroot, a local health food store in Bryn Mawr PA. The woman who originally purchased it had used it twice and returned it. Such are the values of the bourgeois. The store was willing to part with it for a greatly reduced price. They also shipped it to MN as part of the deal. They were happy to get rid of it, I was happy to get it. I had it sent to a friend’s house in St. Paul, MN and it sat on her porch until I arrived in MN several weeks later. It was snowing when I arrived, and it had been for some time. It was January 2008 and there were large snowdrifts everywhere. I schlepped the somewhat heavy and awkward sauna across the snow to my rental car, slipping and sliding in the dark. This was not what I had in mind when I shipped it to MN from the mild climate of Philadelphia. I got it to my daughter’s apartment and set it up, to make sure that it still worked. I was a bit concerned as my friend had left it on her porch in sub freezing weather for several days. I had asked her to put it inside but that did not happen. The world is not a perfect place. It is difficult to have total remote control. Upon investigation, the FIR sauna worked fine. Later, much later, my daughter started using the sauna. It provided great benefit in reducing nickel.
XM radio:
I have listened to XM satellite radio for a number of years. They have hundreds of channels including all sorts of music, talk, old time radio, oldies, sports, news and business. It is a bonanza for someone who likes to listen to the radio, for someone who can embrace that culture. I got the idea of buying a subscription and a radio for my daughter. I drove out to a local mall in MN and purchased a portable XM box and set it up in her room. My daughter was a bit skeptical about this, but soon became an excited listener of music, talk shows, news and baseball. Supposedly the world of radio has seen it’s day, -but it’s magic can still be summoned up by the chronically ill or others who want to invite a variety of airwave situations into their life. It is particularly useful to those who have light sensitivity and to those who employ a disciplined form of resting and pacing - as advocated by Bruce Campbell.
Water Filter:
This PA is convinced that it is important to control all things that the patient puts into their mouth. Meat should be anti-biotic free and free range. Water should be filtered. This PA bought a water filter from a fellow in MD suggested by Dr. Jacob Teitelbaum. Teitelbaum says, "The filter that I have found to be most effective is made by Multi-pure. Multi-pure filters can be obtained from Bren Jacobson at 410-224-4877."
Pedometer:
Following the advice of Dr. Benjamin Natelson, the PA bought a pedometer that my daughter wears. This allows us to determine how much she moves on the average day. It also gives us a baseline to gauge increase or decrease in the ability to move around. Some pedometers are more accurate than others and it is important to get one that works well. We tried a number that were misleading, until we focused on the one that Dr. Natelson recommends in his fine book, Your Symptoms are Real. Dr. Natelson, who practiced for years in Newark, NJ, now practices in New York City. Dr Natelson is a doctor who does fine research in CFS/ME. His suggestions on the use of a pedometer and on the increasing of the “energy envelope” are very useful and practical.
Mini-trampoline:
This was the suggestion of Dr. Karen Vrchota of Winona, MN. Dr. Vrchota is a very kind and compassionate CFS/ME doctor. She has growing experience with this disease and engages it in the most professional and respectful manner. She is open to suggestion and listens carefully. A mini-trampoline, used in even the most minimal way, say four bounces, helps the lymphatic system of the body. It is a partial replacement for exercise for those who cannot exercise. The movement on the trampoline, even the most modest, makes the body think it is exercising. In this way it can be a great help to CFS/ME patients. I bought a Cellerciser mini-trampoline. The are others, but I would pay the money for a good one.
Shower chair:
A shower chair can be useful in the shower. Shower chairs can be purchased in a variety of places including drugstores, medical supply stores and places like Target.
Nickel-free cookware:
In order to limit the ingestion of nickel, this PA bought nickel-free cookware for his daughter. All stainless steel cookware has nickel in it. Nickel-free cookware is not cheap. This idea is a continuation of the notion of being careful what goes in the mouth of a chronically ill patient. I was able to find two brands, Silit and Chantel.
Head set for phone:
The PA bought a head set that plugs into the phone. It is like one of those things that operators wear. His daughter uses it when she is on the phone. It was purchased at Radio Shack
Oasis bedroom: (see Lisa Nagy)
Stair lift:
In order for my daughter to get outside, the Patient Advocate has installed a stair lift. The PA researched the subject on the internet and talked to a number of companies. He learned all about stair lifts and learned that they are very expensive. The PA bought one on Craig’s list in 2007 from a fellow who lived on the beautiful plateau above Red Wing, MN. This fellow's wife has MS and had recently been institutionalized. I asked this fellow if his wife had taken LDN and he said yes, but it had done nothing to halt her descent. In my search I discovered that many folks are trying to dump their stair lifts and the used price can be quite inexpensive, relatively speaking. I drove down to Red Wing, bought my two sons Red Wing boots, and picked up the stair lift. Back in St Paul, I installed the lift in a day or two, gleaning advice from a local distributor of the particular brand that I purchased. They were extremely helpful, especially in cutting it down to the right size. This job taught me one thing: I do not want to install stair lifts for a living. With this stair lift my daughter is able to easily go up and down the stairs as she wishes. A year later I ended up buying and installing another one for the stairs off her porch. This purchase and installation followed the pattern of the first one. I bought a used starlit - a different brand - off Craig’s list from a fellow in Robbinsdale, MN. His mother had passed away and he was moving on. His mobile home and motorcycle were sitting in his driveway, ready to take off to points unknown.
FIR (Far Infrared) sauna:
In doing the Acumen and Biolab mitochondrial tests (suggested by Dr. Myhill), information was revealed that indicated that use of a FIR sauna might be beneficial. The PA did some research on the subject and found that they too are very expensive. There are several kinds of FIR saunas: closets, domes, and blankets. The PA settled on getting a dome sauna. Noodling around the PA found a used FIR sauna - almost new - at Arrowroot, a local health food store in Bryn Mawr PA. The woman who originally purchased it had used it twice and returned it. Such are the values of the bourgeois. The store was willing to part with it for a greatly reduced price. They also shipped it to MN as part of the deal. They were happy to get rid of it, I was happy to get it. I had it sent to a friend’s house in St. Paul, MN and it sat on her porch until I arrived in MN several weeks later. It was snowing when I arrived, and it had been for some time. It was January 2008 and there were large snowdrifts everywhere. I schlepped the somewhat heavy and awkward sauna across the snow to my rental car, slipping and sliding in the dark. This was not what I had in mind when I shipped it to MN from the mild climate of Philadelphia. I got it to my daughter’s apartment and set it up, to make sure that it still worked. I was a bit concerned as my friend had left it on her porch in sub freezing weather for several days. I had asked her to put it inside but that did not happen. The world is not a perfect place. It is difficult to have total remote control. Upon investigation, the FIR sauna worked fine. Later, much later, my daughter started using the sauna. It provided great benefit in reducing nickel.
XM radio:
I have listened to XM satellite radio for a number of years. They have hundreds of channels including all sorts of music, talk, old time radio, oldies, sports, news and business. It is a bonanza for someone who likes to listen to the radio, for someone who can embrace that culture. I got the idea of buying a subscription and a radio for my daughter. I drove out to a local mall in MN and purchased a portable XM box and set it up in her room. My daughter was a bit skeptical about this, but soon became an excited listener of music, talk shows, news and baseball. Supposedly the world of radio has seen it’s day, -but it’s magic can still be summoned up by the chronically ill or others who want to invite a variety of airwave situations into their life. It is particularly useful to those who have light sensitivity and to those who employ a disciplined form of resting and pacing - as advocated by Bruce Campbell.
Water Filter:
This PA is convinced that it is important to control all things that the patient puts into their mouth. Meat should be anti-biotic free and free range. Water should be filtered. This PA bought a water filter from a fellow in MD suggested by Dr. Jacob Teitelbaum. Teitelbaum says, "The filter that I have found to be most effective is made by Multi-pure. Multi-pure filters can be obtained from Bren Jacobson at 410-224-4877."
Pedometer:
Following the advice of Dr. Benjamin Natelson, the PA bought a pedometer that my daughter wears. This allows us to determine how much she moves on the average day. It also gives us a baseline to gauge increase or decrease in the ability to move around. Some pedometers are more accurate than others and it is important to get one that works well. We tried a number that were misleading, until we focused on the one that Dr. Natelson recommends in his fine book, Your Symptoms are Real. Dr. Natelson, who practiced for years in Newark, NJ, now practices in New York City. Dr Natelson is a doctor who does fine research in CFS/ME. His suggestions on the use of a pedometer and on the increasing of the “energy envelope” are very useful and practical.
Mini-trampoline:
This was the suggestion of Dr. Karen Vrchota of Winona, MN. Dr. Vrchota is a very kind and compassionate CFS/ME doctor. She has growing experience with this disease and engages it in the most professional and respectful manner. She is open to suggestion and listens carefully. A mini-trampoline, used in even the most minimal way, say four bounces, helps the lymphatic system of the body. It is a partial replacement for exercise for those who cannot exercise. The movement on the trampoline, even the most modest, makes the body think it is exercising. In this way it can be a great help to CFS/ME patients. I bought a Cellerciser mini-trampoline. The are others, but I would pay the money for a good one.
Shower chair:
A shower chair can be useful in the shower. Shower chairs can be purchased in a variety of places including drugstores, medical supply stores and places like Target.
Nickel-free cookware:
In order to limit the ingestion of nickel, this PA bought nickel-free cookware for his daughter. All stainless steel cookware has nickel in it. Nickel-free cookware is not cheap. This idea is a continuation of the notion of being careful what goes in the mouth of a chronically ill patient. I was able to find two brands, Silit and Chantel.
Head set for phone:
The PA bought a head set that plugs into the phone. It is like one of those things that operators wear. His daughter uses it when she is on the phone. It was purchased at Radio Shack
Saturday, October 24, 2009
Lisa Nagy
When this Patient Advocate was attending the CFS conference in Ft. Lauderdale in 2007, he met a very interesting gal. Her name is Lisa Nagy and she was unsuccessfully trying to raise awareness at this conference for environmental poisoning. Living in San Diego and working as an ER doc, Lisa became mysteriously sick. Lisa was sick for many years with what turned out to be environment poisoning. She has cured herself, with help from others, and now is a powerful advocate of diagnosis and treatments for environmental poisoning. Dr. Nagy’s story can be found here.
Environmental poisoning affects many CFS/ME patients, often as a secondary reaction to the CFS/ME itself. CFS doctors like Cheney take toxicity from the environment seriously, although he thinks of environmental poisoning as a peripheral item to CFS/ME. For those of you that are interested Dr. Nagy has a website and is available for consultation on environmental issues. I have spoken with her on several occasions and she is very knowledgeable and helpful in her suggestions for my daughter. Among other things, she recommends that ill patients create an Oasis bedroom. This means removing all EMF devices, purchasing a mattress and bedding that does not have fire retardants, PBBs and other toxins, and using charcoal air filters in all rooms, but particularly in the bedroom She recommends several air filters.
Dr. Nagy works closely with Dr. William Rea, the foremost expert in environmental testing and treatment. He runs a clinic in Dallas TX. At the moment Dr. Nagy does not practice medicine. but she has applied for a license in MA where she now lives. She travels to environmental conferences - gathering information, and giving lectures. Environmental illness seems to overlap in many instances with CFS/ME in much the same way as thyroid issues or MCP or Gulf War Syndrome. For those with environmental issues, Dr. Nagy can be very helpful.
Wednesday, October 21, 2009
Dr. Dale Guyer
In the pursuit of his daughter's betterment, this Patient Advocate has written about a number of CFS/ME doctors. The PA admires many researchers and doctors including Myhill, Vrchota, Cheney, Peterson, Chia, Levine, Enlander and de Meirleir. The PA is a particular admirer of Dr. Dale Guyer, who practices medicine in Indianapolis, IN. Dr. Guyer has a number of patients who are active on the Prohealth CFS/ME Message Board. Dr. Guyer is knowledgeable, kind, patient - and reserved in his treatments. His use of antivirals can be found in the following document, available on Prohealth from 2007. (A more general treatment protocol was revealed in Dale Guyer, M.D., on Treating Chronic Fatigue Syndrome & Fibromyalgia: “Covering the Bases & Peeling Back the Layers of the Onion”, published a year earlier.)
“Antiviral medications have generated considerable scientific attention in the primary and adjunctive treatment of CFIDS and FMS - in the subset of the population with a viral component as part of individual etiology.
Through the years, I have noted a few good additive results with medications such as Famvir, Valtrex, and occasionally Acyclovir and Amantadine. Over the last year, thanks to the work of Dr. Jose Montoya at Stanford University, I have found that ValcyteTM offers another option that can really be the proverbial “icing on the cake” for many afflicted with CFIDS. Like other clinicians, my own experience with antiviral medications is that they are often very helpful with occasionally dramatic benefits, adding another viable alternative to the landscape of treatment options.
Some years ago, I had doubts that antiviral meds could add significantly to the management of CFIDS. Retrospectively, the doubts stemmed largely from becoming accustomed to observing good results with therapeutic strategies I was already using.
On many occasions, I have noted that comparatively simple treatments often deliver extraordinary results - Transfer Factor,1 oxidative therapies, Intravenous Vitamin (IV) therapy and vitamin B12 shots, to mention a few. Obviously, no protocol represents a “one size fits all” strategy. Clinicians are still required to find unique treatment strategies for unique patients.
Recently, I followed two male high school students who were very physically active prior to development of severe cases of mononucleosis. Following the episodes over the next six months, I noted that both students exhibited the classic findings of CFIDS. Both also responded almost immediately to a cocktail of IV Therapy, Transfer Factor and broad-spectrum nutritional supplementation. One patient eventually competed in an international martial arts competition in Germany, while the other returned to twice daily football practice in the heat of the Indiana summer - a challenge even for those without CFIDS!
In addition, my earlier opinions were based in large part on not observing impressive results with antiviral medications - at least not as good as I came to expect from other therapies.
Along the way, a good friend - Kristin Loomis, who in addition to being very knowledgeable is also the Executive Director of the HHV-6 Foundation - encouraged me to continue to give antivirals a try. I must say she, as usual, proved correct. Last year, she introduced me to the research of Dr. Montoya2, a Stanford infectious disease specialist; and since then I have seen often very good success with Valcyte.
In 2007, we began collecting data on the results of adding Famvir and Valcyte to individual treatment plans as clinically warranted. The formal results will be presented at the International College of Integrative Medicine meeting in Nashville in March 2008. In the meantime, I want to share observations that I have made over the last several months on very intriguing clinical findings that include the broad array of subjective improvements patients report while on antiviral therapy.
One interesting case involves a gentleman undergoing treatment for bipolar disorder for years. During his last office visit, he remarked that since starting Valcyte not only did the CFIDS symptoms reduce substantially, but he also noticed more motivation - for example, mowing the lawn and enjoying it, something he had not done in years. The patient reported that his lithium dose was reduced from 1200 mg daily to 300 mg daily.
Others have reported a restored sense of joy and humor - feelings absent for years, in addition to improved libido, decreased anxiety and depression, improvement in asthma and allergic symptoms, positive clinical changes in autoimmune disorders such as Crohn’s Disease, rheumatoid arthritis, and even one case of rare ALS type progressive motor neuron disease.
As our clinical experience demonstrates, our evolving understanding of the pervasive role viral activity in human health expands. We are beginning to understand that chronic viral activity may be present in the population at levels higher than previously assumed and not just involved in the etiology of CFIDS.
Can we predict which patients will do well with antiviral therapy?
Overall, it would appear that patients who fare better have a classic “viral” provoke history - i.e., they had a case of a “viral-like” illness, never got better, and over time keep going downhill. Duration of symptoms may be six months or 20 years. I have observed a few cases where these symptoms started after receiving a vaccine, such as the flu vaccine, and another case that appeared to begin after receiving a tetanus vaccine. In addition, patients will have consistent lab findings, including: depressed natural killer cells, low adrenal function, hormone deficiencies, elevated RNase-L3 levels, and elevated viral antibodies to Human Herpesvirus Six (HHV-6), cytomegalovirus (CMV), Epstein-Barr virus (EBV) and occasionally other viruses.
As a rule of thumb, individuals who experience milder symptoms of shorter duration [accompanied by elevated levels of] IgG (Immunoglobulin G) to EBV seem to do well with Famvir. However, patients more severely affected for a longer duration with antibodies more skewed to HHV-6 or CMV will often need Valcyte.
Younger individuals with shorter duration of symptoms tend to get better faster, while people over 40 or those with several years of symptoms may need a few months to start getting back on track. Often even after six months of Valcyte or Famvir, we will maintain some individuals on a low dose of Famvir or Valcyte in the 50 mg range (a dose we compound because it is not commercially available).
Another important issue is the necessity to take a comprehensive view of CFIDS.
Often, physicians desire to treat CFIDS simplistically like we might address a sore throat - one cause, one solution. Undoubtedly, theories come and go relating to CFIDS, but in my experience, physicians who get optimal results evaluate all contributing factors, listen well, and integrate therapeutic support strategies to address contributing issues, such as: adrenal dysfunction, sub-clinical hypothyroidism, neurotransmitter imbalances, nutritional deficiencies, endocrine problems (depleted levels of DHEA, growth hormone, testosterone) - to name a few.
In my experience, taking a more comprehensive approach accelerates the process of restoring health, while simultaneously diminishing the likelihood of feeling exhausted, depleted and miserable while taking antiviral medication.
The inclusion of antiviral therapy in CFIDS has in my experience been a great addition. Like any stand-alone therapy, it may not offer the big difference we want to see; however, when combined with other supportive therapies, it offers a giant step forward in restoring wellness in individuals with CFIDS.”
One comment on the above article focused on the issue of the toxicity of these antiviral drugs for the CFS patient population.
While it was an oversight that Dr. Guyer did not speak to this issue in his discussion, he is very sensiitve to the issue and quite cautious in prescribing antiviral medication to CFS patients. As can be noted by his general attitude, Dr. Guyer is intent on strengthening the CFS patient in a variety of ways in order to prepare the patients for antivirals. Dr. Guyer prescribes antivirals to those patients whom he believes can tolerate them - and often he does so in a very low dose (and builds up). It is worth noting that Dr. Derek Enlander stated at the NJ CFS/ME conference that he had given Valcyte to 120 patients (again under a careful controlled setting) and had not had any adverse effects. Dr. Enlander indicated that Valcyte benefited about 40% of the patients to whom he prescribed
“Antiviral medications have generated considerable scientific attention in the primary and adjunctive treatment of CFIDS and FMS - in the subset of the population with a viral component as part of individual etiology.
Through the years, I have noted a few good additive results with medications such as Famvir, Valtrex, and occasionally Acyclovir and Amantadine. Over the last year, thanks to the work of Dr. Jose Montoya at Stanford University, I have found that ValcyteTM offers another option that can really be the proverbial “icing on the cake” for many afflicted with CFIDS. Like other clinicians, my own experience with antiviral medications is that they are often very helpful with occasionally dramatic benefits, adding another viable alternative to the landscape of treatment options.
Some years ago, I had doubts that antiviral meds could add significantly to the management of CFIDS. Retrospectively, the doubts stemmed largely from becoming accustomed to observing good results with therapeutic strategies I was already using.
On many occasions, I have noted that comparatively simple treatments often deliver extraordinary results - Transfer Factor,1 oxidative therapies, Intravenous Vitamin (IV) therapy and vitamin B12 shots, to mention a few. Obviously, no protocol represents a “one size fits all” strategy. Clinicians are still required to find unique treatment strategies for unique patients.
Recently, I followed two male high school students who were very physically active prior to development of severe cases of mononucleosis. Following the episodes over the next six months, I noted that both students exhibited the classic findings of CFIDS. Both also responded almost immediately to a cocktail of IV Therapy, Transfer Factor and broad-spectrum nutritional supplementation. One patient eventually competed in an international martial arts competition in Germany, while the other returned to twice daily football practice in the heat of the Indiana summer - a challenge even for those without CFIDS!
In addition, my earlier opinions were based in large part on not observing impressive results with antiviral medications - at least not as good as I came to expect from other therapies.
Along the way, a good friend - Kristin Loomis, who in addition to being very knowledgeable is also the Executive Director of the HHV-6 Foundation - encouraged me to continue to give antivirals a try. I must say she, as usual, proved correct. Last year, she introduced me to the research of Dr. Montoya2, a Stanford infectious disease specialist; and since then I have seen often very good success with Valcyte.
In 2007, we began collecting data on the results of adding Famvir and Valcyte to individual treatment plans as clinically warranted. The formal results will be presented at the International College of Integrative Medicine meeting in Nashville in March 2008. In the meantime, I want to share observations that I have made over the last several months on very intriguing clinical findings that include the broad array of subjective improvements patients report while on antiviral therapy.
One interesting case involves a gentleman undergoing treatment for bipolar disorder for years. During his last office visit, he remarked that since starting Valcyte not only did the CFIDS symptoms reduce substantially, but he also noticed more motivation - for example, mowing the lawn and enjoying it, something he had not done in years. The patient reported that his lithium dose was reduced from 1200 mg daily to 300 mg daily.
Others have reported a restored sense of joy and humor - feelings absent for years, in addition to improved libido, decreased anxiety and depression, improvement in asthma and allergic symptoms, positive clinical changes in autoimmune disorders such as Crohn’s Disease, rheumatoid arthritis, and even one case of rare ALS type progressive motor neuron disease.
As our clinical experience demonstrates, our evolving understanding of the pervasive role viral activity in human health expands. We are beginning to understand that chronic viral activity may be present in the population at levels higher than previously assumed and not just involved in the etiology of CFIDS.
Can we predict which patients will do well with antiviral therapy?
Overall, it would appear that patients who fare better have a classic “viral” provoke history - i.e., they had a case of a “viral-like” illness, never got better, and over time keep going downhill. Duration of symptoms may be six months or 20 years. I have observed a few cases where these symptoms started after receiving a vaccine, such as the flu vaccine, and another case that appeared to begin after receiving a tetanus vaccine. In addition, patients will have consistent lab findings, including: depressed natural killer cells, low adrenal function, hormone deficiencies, elevated RNase-L3 levels, and elevated viral antibodies to Human Herpesvirus Six (HHV-6), cytomegalovirus (CMV), Epstein-Barr virus (EBV) and occasionally other viruses.
As a rule of thumb, individuals who experience milder symptoms of shorter duration [accompanied by elevated levels of] IgG (Immunoglobulin G) to EBV seem to do well with Famvir. However, patients more severely affected for a longer duration with antibodies more skewed to HHV-6 or CMV will often need Valcyte.
Younger individuals with shorter duration of symptoms tend to get better faster, while people over 40 or those with several years of symptoms may need a few months to start getting back on track. Often even after six months of Valcyte or Famvir, we will maintain some individuals on a low dose of Famvir or Valcyte in the 50 mg range (a dose we compound because it is not commercially available).
Another important issue is the necessity to take a comprehensive view of CFIDS.
Often, physicians desire to treat CFIDS simplistically like we might address a sore throat - one cause, one solution. Undoubtedly, theories come and go relating to CFIDS, but in my experience, physicians who get optimal results evaluate all contributing factors, listen well, and integrate therapeutic support strategies to address contributing issues, such as: adrenal dysfunction, sub-clinical hypothyroidism, neurotransmitter imbalances, nutritional deficiencies, endocrine problems (depleted levels of DHEA, growth hormone, testosterone) - to name a few.
In my experience, taking a more comprehensive approach accelerates the process of restoring health, while simultaneously diminishing the likelihood of feeling exhausted, depleted and miserable while taking antiviral medication.
The inclusion of antiviral therapy in CFIDS has in my experience been a great addition. Like any stand-alone therapy, it may not offer the big difference we want to see; however, when combined with other supportive therapies, it offers a giant step forward in restoring wellness in individuals with CFIDS.”
One comment on the above article focused on the issue of the toxicity of these antiviral drugs for the CFS patient population.
While it was an oversight that Dr. Guyer did not speak to this issue in his discussion, he is very sensiitve to the issue and quite cautious in prescribing antiviral medication to CFS patients. As can be noted by his general attitude, Dr. Guyer is intent on strengthening the CFS patient in a variety of ways in order to prepare the patients for antivirals. Dr. Guyer prescribes antivirals to those patients whom he believes can tolerate them - and often he does so in a very low dose (and builds up). It is worth noting that Dr. Derek Enlander stated at the NJ CFS/ME conference that he had given Valcyte to 120 patients (again under a careful controlled setting) and had not had any adverse effects. Dr. Enlander indicated that Valcyte benefited about 40% of the patients to whom he prescribed
Wednesday, October 7, 2009
Vegetable Juicing
The Patient Advocate first learned about the potential benefits of vegetable juicing from the Prohealth Board. Rick Carlson wrote a short piece on how he improved his CFS with transfer factors and vegetable juicing and a few other items. That was enough for me. The PA decided to explore juicing for myself. It was something that could easily be done in the home, and there are no drawbacks as far as this PA can determine.
The Patient Advocate was in Amsterdam for a week in 2006 and he found a juice bar run by what seemed to him to be a Central American Indian – at least he played the part to the hilt. The PA ordered a “greens” drink and was shortly thereafter looking frantically for a public bathroom - as the drink went right through him. So, right away, The PA learned a little about vegetable juicing. It is a good idea is to start slowly and build tolerance over time.
The PA read about vegetable juicers on the internet and after finding out how expensive the high end ones could be he settled on an Omega 4000. The PA read many reviews and am happy with my choice. It is durable and makes nice juice. There are arguments for this or that type of juicer - and you can read all about it to your heart’s content. The PA has been using this Omega juicer for three years now and it is great.
The Omega 4000 is surprising easy to wash and reuse. It takes about five or ten minutes to wash the elements by hand. The leftovers (the non-juice products) are good for mulching if you are into that kind of thing. The purchase and preparation of the vegetables takes some time, so if the patient is completely infirm they might need someone to make it for them. Otherwise juicing can be easily be incorporated into the regular day.
There is a great deal of information available on vegetable juicing. It takes a little time to learn the literature of juicing, but, in time, it becomes pretty routine. The PA read a bunch of books from the library or purchased books in used book stores or from the internet. The PA particularly remembers "The Juiceman’s Power of Juicing" and "Juicing for Life", both of which can be purchased on Amazon.
Various concoctions can be made, each with their advantages. Beautiful colors of vegetable juice can be fashioned ranging from orangish red (warms) to bright florescent green (cools) to a sewer sludge look (mixture). They all taste great. Juicing represents pure health goodness.
The Patient Advocate juices on a rotational basis with carrots, beets, cucumber, ginger, kale, dandelion, red cabbage, spinach, celery, garlic, oregano, red and green peppers, romaine lettuce, and tomatoes. Often the PA just puts a lot of things together. Sometimes the PA will just combine a few things. Carrots and beets have a higher glycemic index. Spinach and parley are high in oxalates, but the rest are generally low in oxalates - if that is a concern.
Great claims are made for juicing from various quarters, and they all sound nice. The bottom line is that it is an obvious way to get enzymes and nutrients directly into the system. Fresh vegetable juice contains many beneficial enzymes when it is consumed in the first twenty minute. It is important to wash the vegetables carefully and it is recommended to use Organic Vegetables. This of course is expensive – and someone has to lug the vegetables.
It took awhile to convince my daughter, my patient, to get involved in juicing. Now she and her boyfriend are confirmed juicers. Juicing helps protect the body from getting something worse, and it is a good means to get various items into your body. For instance, you can add garlic, ginger, flaxseed, turmeric, olive leaf extract, caprylic acid, and oregano oil, as well as many other items, directly into the juice.
The PA was really convinced on the benefit of vegetable juicing after he purchased a video by called The Joy of Nutrition. by Dale Figtree, PhD. This PA would recommend buying this DVD. It sells for cheap on the Prohealth site. Dale Figtree has an entire nutritional program of which juicing is a part. She says that she cured her lymphoma by nutritional means. Of course these stories are always fascinating.
The Patient Advocate was in Amsterdam for a week in 2006 and he found a juice bar run by what seemed to him to be a Central American Indian – at least he played the part to the hilt. The PA ordered a “greens” drink and was shortly thereafter looking frantically for a public bathroom - as the drink went right through him. So, right away, The PA learned a little about vegetable juicing. It is a good idea is to start slowly and build tolerance over time.
The PA read about vegetable juicers on the internet and after finding out how expensive the high end ones could be he settled on an Omega 4000. The PA read many reviews and am happy with my choice. It is durable and makes nice juice. There are arguments for this or that type of juicer - and you can read all about it to your heart’s content. The PA has been using this Omega juicer for three years now and it is great.
The Omega 4000 is surprising easy to wash and reuse. It takes about five or ten minutes to wash the elements by hand. The leftovers (the non-juice products) are good for mulching if you are into that kind of thing. The purchase and preparation of the vegetables takes some time, so if the patient is completely infirm they might need someone to make it for them. Otherwise juicing can be easily be incorporated into the regular day.
There is a great deal of information available on vegetable juicing. It takes a little time to learn the literature of juicing, but, in time, it becomes pretty routine. The PA read a bunch of books from the library or purchased books in used book stores or from the internet. The PA particularly remembers "The Juiceman’s Power of Juicing" and "Juicing for Life", both of which can be purchased on Amazon.
Various concoctions can be made, each with their advantages. Beautiful colors of vegetable juice can be fashioned ranging from orangish red (warms) to bright florescent green (cools) to a sewer sludge look (mixture). They all taste great. Juicing represents pure health goodness.
The Patient Advocate juices on a rotational basis with carrots, beets, cucumber, ginger, kale, dandelion, red cabbage, spinach, celery, garlic, oregano, red and green peppers, romaine lettuce, and tomatoes. Often the PA just puts a lot of things together. Sometimes the PA will just combine a few things. Carrots and beets have a higher glycemic index. Spinach and parley are high in oxalates, but the rest are generally low in oxalates - if that is a concern.
Great claims are made for juicing from various quarters, and they all sound nice. The bottom line is that it is an obvious way to get enzymes and nutrients directly into the system. Fresh vegetable juice contains many beneficial enzymes when it is consumed in the first twenty minute. It is important to wash the vegetables carefully and it is recommended to use Organic Vegetables. This of course is expensive – and someone has to lug the vegetables.
It took awhile to convince my daughter, my patient, to get involved in juicing. Now she and her boyfriend are confirmed juicers. Juicing helps protect the body from getting something worse, and it is a good means to get various items into your body. For instance, you can add garlic, ginger, flaxseed, turmeric, olive leaf extract, caprylic acid, and oregano oil, as well as many other items, directly into the juice.
The PA was really convinced on the benefit of vegetable juicing after he purchased a video by called The Joy of Nutrition. by Dale Figtree, PhD. This PA would recommend buying this DVD. It sells for cheap on the Prohealth site. Dale Figtree has an entire nutritional program of which juicing is a part. She says that she cured her lymphoma by nutritional means. Of course these stories are always fascinating.
Thursday, October 1, 2009
Viruses
Trying to figure out whether viruses are involved in my daughter’s illness is a nightmare. She came down with this neuro-immune illness following a virus. Her boyfriend also caught this virus; and, most surprisingly, he too has CFS/ME - about half speed. Dr. Enlander believes that CFS is a communicable illness, but not necessarily readily contagious.
Blood tests are done at various labs to determine antibody response to specific viruses. The usual suspects in CFS/ME are CMV, EBV, HHV 6, Parvo 19 and Coxsackie B. (The Whittemore-Peterson Institute is about to announce a novel virus previously unconnected to CFS. This virus is named XMRV. My guess is that something should be published in Science magazine this month.)
There is speculation that many viruses are present in CFS patients. Soon a virachip will be available that will indicate what viruses are in a particular person.
Many doctors and researchers for many years have tried to “read” antibody titers to determine viral cause, or activity, or reactivity. It all makes for unsatisfactory investigation (by me), as the evidence is so conflicting. The connection between viral titers (numbers) and what is actually happening in the body is sketchy. Certain CFS doctors are looking for high titers as an indication of active viral infection (or reactivation). They are trying to determine a correspondence between illness severity and elevation of titers. For instance, Dr.Susan Levine will casually look at a bunch of test pages of my daughter, and in her offhand way she will put her finger on the elevated titers to EBV VCA IgG and suggest maybe that this is meaningful. It is a good guess but it remains just that, a guess. My daughter has had readings of 1280:1 IgG EBV VCA for years and they stay the same - high and they do not fluctuate. Some people believe that consistent high IgG titers over time is indicative of an active infection.
To get his feeling about EBV titers, I spoke to Dr. A. Martin Lerner in UK a year ago. He said flat out that the IgG titers for EBV "are worthless". Instead he uses an ARUP Diasorin test for EBV VCA IgM titers. Just by chance, my daughter been doing this test for about four years; and she has never had an elevated IgM (although her IgG is consistently elevated). Often an elevated early antigen (EA) test for EBV is seen as the best indication of active involvement. My daughter has gotten slightly elevated EA EBV titers at one particular lab (Focus) but not at others. (It seems to me that Focus labs returns higher antibody results than other labs, much like Igenex gets higher lyme antibody readings than MDlabs or Labcorp. So if you are looking for higher titers...)
My conclusion of all this is simple. There is no way to determine EBV involvement other than take antivirals and see what happens.
HHV6 is even more distressing to diagnose. The HHV6 Foundation has a website with a good message board for antivirals against HHV6.
Dr Jose Montoya at Stanford, who is now working closely with Dr A. Martin Lerner, has also pursued a correlation between antibody titers and illness, particular trying to establish a certain level of titer to indicate potential success in treatment. He gives Valcyte to patients who have titers to HHV6 IgG over 640:1 and to EBV IgG over 1280:1. He sees this as the best approach. (My daughter had 640:1 to HHV6 in 2007 and then 160:1 the next. In between she started taking Isoprinosine. So far the Montoya Valcyte trials have had uncertain results. At some point a more extensive report will be issued, but it has been over a year now since his preliminary report in June 2008. All this is immensely speculative and so far no certainty lies in any direction. Lerner has the best record and documents for treatment of CFS/ME with antivirals. Anyone wanting to have direction in antiviral therapy and CFS might want to think about traveling to Dr. Lerner. Dr. Enlander also has a heightened interest in HHV6, and treatment with Valcyte.
My daughter also has elevated Coxsackie B antibodies. Coxsackie B is an enterovirus - as opposed to a herpes virus. Years ago Cox B was thought to be closely attached to CFS, but no serious correlation could be established. From what I understand, many healthy people have high titers to coxsackie B. Dr. John Chia deals mostly with enteroviruses. He uses the Coxsackie antibody tests at ARUP, an AB by neuralization test. He also does more conclusive testing with a stomach biopsy. The treatment that he uses is Oxymatrine, a Chinese herb, produced now in the U.S. as Equilibrant. Dr. Chia says that 53% of his enterovirus patients show improvement on Oxymatrine. There is a Enterovirus website that discusses this subset of CFS/ME. Dr Chia has an interview about Oxymatrine on Cort Johnson's blog.
The battle goes on whether CFS/ME is a reactivation of a virus or an immune dysfunction or an interlocking of the two.
Cheney himself has given up chasing after viruses. His approach is to deal with the symptoms of sleep and pain, and then to find the “control point” of this disease and attack that. His belief is that the control point is oxygen toxicity. He uses specific cell signaling factors to center the immune system. For viruses he uses Artesunate, a malaria drug that has broad anti-viral activity and a high tolerance rate. Much more about Cheney’s ideas can be garnered from the internet and from his websites – cheneyclinic.com and cheneyresearch.com.
Currently CFS is being sub-sectioned into various compartments for particular treatments - but this remains speculative at the moment. The best ideas seem to be to straighten out the immune system through dealing with hormonal issues, gut dysbiosis, diet, sleep habits, resting and pacing, metals toxicity, mold poisoning, mitochondrial problems and using cell signaling factors (like Nexavir), immune regulators (like Isoprinosine and LDN) - and then judiciously adding in antivirals. These are the concepts that are followed by many CFS/ME doctors.
Blood tests are done at various labs to determine antibody response to specific viruses. The usual suspects in CFS/ME are CMV, EBV, HHV 6, Parvo 19 and Coxsackie B. (The Whittemore-Peterson Institute is about to announce a novel virus previously unconnected to CFS. This virus is named XMRV. My guess is that something should be published in Science magazine this month.)
There is speculation that many viruses are present in CFS patients. Soon a virachip will be available that will indicate what viruses are in a particular person.
Many doctors and researchers for many years have tried to “read” antibody titers to determine viral cause, or activity, or reactivity. It all makes for unsatisfactory investigation (by me), as the evidence is so conflicting. The connection between viral titers (numbers) and what is actually happening in the body is sketchy. Certain CFS doctors are looking for high titers as an indication of active viral infection (or reactivation). They are trying to determine a correspondence between illness severity and elevation of titers. For instance, Dr.Susan Levine will casually look at a bunch of test pages of my daughter, and in her offhand way she will put her finger on the elevated titers to EBV VCA IgG and suggest maybe that this is meaningful. It is a good guess but it remains just that, a guess. My daughter has had readings of 1280:1 IgG EBV VCA for years and they stay the same - high and they do not fluctuate. Some people believe that consistent high IgG titers over time is indicative of an active infection.
To get his feeling about EBV titers, I spoke to Dr. A. Martin Lerner in UK a year ago. He said flat out that the IgG titers for EBV "are worthless". Instead he uses an ARUP Diasorin test for EBV VCA IgM titers. Just by chance, my daughter been doing this test for about four years; and she has never had an elevated IgM (although her IgG is consistently elevated). Often an elevated early antigen (EA) test for EBV is seen as the best indication of active involvement. My daughter has gotten slightly elevated EA EBV titers at one particular lab (Focus) but not at others. (It seems to me that Focus labs returns higher antibody results than other labs, much like Igenex gets higher lyme antibody readings than MDlabs or Labcorp. So if you are looking for higher titers...)
My conclusion of all this is simple. There is no way to determine EBV involvement other than take antivirals and see what happens.
HHV6 is even more distressing to diagnose. The HHV6 Foundation has a website with a good message board for antivirals against HHV6.
Dr Jose Montoya at Stanford, who is now working closely with Dr A. Martin Lerner, has also pursued a correlation between antibody titers and illness, particular trying to establish a certain level of titer to indicate potential success in treatment. He gives Valcyte to patients who have titers to HHV6 IgG over 640:1 and to EBV IgG over 1280:1. He sees this as the best approach. (My daughter had 640:1 to HHV6 in 2007 and then 160:1 the next. In between she started taking Isoprinosine. So far the Montoya Valcyte trials have had uncertain results. At some point a more extensive report will be issued, but it has been over a year now since his preliminary report in June 2008. All this is immensely speculative and so far no certainty lies in any direction. Lerner has the best record and documents for treatment of CFS/ME with antivirals. Anyone wanting to have direction in antiviral therapy and CFS might want to think about traveling to Dr. Lerner. Dr. Enlander also has a heightened interest in HHV6, and treatment with Valcyte.
My daughter also has elevated Coxsackie B antibodies. Coxsackie B is an enterovirus - as opposed to a herpes virus. Years ago Cox B was thought to be closely attached to CFS, but no serious correlation could be established. From what I understand, many healthy people have high titers to coxsackie B. Dr. John Chia deals mostly with enteroviruses. He uses the Coxsackie antibody tests at ARUP, an AB by neuralization test. He also does more conclusive testing with a stomach biopsy. The treatment that he uses is Oxymatrine, a Chinese herb, produced now in the U.S. as Equilibrant. Dr. Chia says that 53% of his enterovirus patients show improvement on Oxymatrine. There is a Enterovirus website that discusses this subset of CFS/ME. Dr Chia has an interview about Oxymatrine on Cort Johnson's blog.
The battle goes on whether CFS/ME is a reactivation of a virus or an immune dysfunction or an interlocking of the two.
Cheney himself has given up chasing after viruses. His approach is to deal with the symptoms of sleep and pain, and then to find the “control point” of this disease and attack that. His belief is that the control point is oxygen toxicity. He uses specific cell signaling factors to center the immune system. For viruses he uses Artesunate, a malaria drug that has broad anti-viral activity and a high tolerance rate. Much more about Cheney’s ideas can be garnered from the internet and from his websites – cheneyclinic.com and cheneyresearch.com.
Currently CFS is being sub-sectioned into various compartments for particular treatments - but this remains speculative at the moment. The best ideas seem to be to straighten out the immune system through dealing with hormonal issues, gut dysbiosis, diet, sleep habits, resting and pacing, metals toxicity, mold poisoning, mitochondrial problems and using cell signaling factors (like Nexavir), immune regulators (like Isoprinosine and LDN) - and then judiciously adding in antivirals. These are the concepts that are followed by many CFS/ME doctors.
Tuesday, September 29, 2009
Gut Dysbiosis (again)
At times stories emerge of individuals gaining betterment from one particular treatment. For instance MATN recovered from her illness with a strict and thorough change in her diet. She embraced a Stone Age diet and seriously restricted what she ate. Her testimony is quite convincing and you can read about her success on the Prohealth board. Barrowinnovations reported great improvement with treating gut dysbiosis and identifying gut pathologies through diagnostic stool samples. This was a big breakthrough for her.
While both diet and gut ecology are important elements, it is the rare individual who can get betterment through one treatment. Dr. Cheney states unequivocally that diet changes cannot cure CFS/ME. He does however believe that diet is a factor that needs to be addressed, and he has his recommendations on his new Cheney research site, available for a fee at cheneyresearch.com
Dr. Myhill also has her recommendations about food available at her website, drmyhill.co.uk. She also has a host of other recommendations on this site. Dr. Terry Wahls in Iowa , who has stabilized and reversed her own MS, has various dietary recommendations in her book Minding your Mitochondria. Dr. Wahls is careful about making generalized claims for her recommendations, stating only that these dietary changes were on benefit to her. However, her startling story makes one sit up and pay attention. Dr Wahls is trying to do some clinical trials involving her diet, but so far has been unsuccessful in getting this going.
Gut dysbiosis is an interesting problem. Doctors like de Meirleir or Bested and Logan see gut dysbiosis as being a central part of treatment. Others, like Dr. Leo Galland, have made a long time connection between chronic illness and gut health.
Gut ecology is best viewed with the matrix of contemporary Afghanistan in mind. It is a complex, difficult and longstanding struggle between competing systems or ideologies. It is the good guys and the bad guys. Tipping the balance towards the good is a difficult and lengthy endeavor. It takes hard work. Progress can be made and then backsliding can occur and the problem has to be addressed again.
Candida is a good example. My daughter has high candida antibodies. In other words she is sensitive to candida. She takes antigen drops for candida. Frontline treatment of candida involve diflucan and nystatin. These drugs are very successful in killing candida. Sometimes patients get real betterment at this point. For one sensitive to candida, the fix can be temporary and the candida can persistent. In other words it can come back.
Something additional needs to be done to keep candida in check. This most obviously involves dietary changes that starve the candida. Sugar and simple carbohydrates need to be avoided. The diet is quite strict. Often certain fruits and fruit juices need to be cut out. One can search out anti-candida diets - but they are generally what Dr. Cheney or Dr. Myhill or Dr de Meirleir propose – low to moderate protein, low carbs, high vegetable diets.
Testing for candida and other forms of gut dysbiosis can be done through a complete diagnostic stool samples – tests that are easily done out of the home. They can be ordered through Metametrix, Genovas, Redlabs, BE, and Diagnostechs. Rich van Konynenburg recommends the Diagnostechs test. Each test has something to offer. Some are easier to do than others. Follow-up tests can gauge progress. Other tests that provide reliable markers for gut dysbiosis and candida activity are the organic acids test and the amino acids test. This Patient Advocate uses Great Plains for the OAT and Doctors Data for the Amino Acids. These tests can be used to measure deficiencies and also to track progress. The PA has learned, with the help of others, principally Rich van Konynenburg, how to interpret or “read” these tests. Another useful test for tracking Hydrogen Sulfide production in the urine is available through Prohealth.
Probiotics are seen as a linchpin in gut ecology. Probiotics are the good guys and they settle in and contest with the bad guys - or at least they try to. In CFS/ME it is difficult to get the probiotics to colonize or stick in the gut. Measurements of good bacteria remain low in spite of heavy probiotic supplementation. Various things, either endemic to the illness, or unknown items, conspire against the colonization of good bacteria. The good bacteria gets swept out of the gut either the result of immune dysfunction or the cause of immune dysfunction.
Some probiotics are seen as better than others. Different doctors or researchers have different ideas about probiotics. Probiotics have become more widely studied in the past 15 years and are generally surfacing as having general and specific health benefits. Many claims of probiotic benefits are made but few are substantiated. More testing and trials of Probiotics are going on at the present time. The NYTimes had an article on Probiotics in the Science section on Tuesday September 29, 2009.
One can look at gut motility as a problem of good bacteria sticking. One can look at small intestinal bacterial overgrowth (SBIO) as a source of difficulties. Certainly one can rotate probiotics - and see if some work better than others. The New York Times article mentioned several well-tested (in specific situations) probiotics. These include lactobacillus GG or Culturelle, and Align, a bifidobacterium infantis 35624. Both are seen as potentially helpful in CFS/ME, and both are available in drugstores throughout the United States. Mutaflor, a probiotic Nissel1917, is available from Germany and is recommended by both de Meirleir and Cheney. de Meirleir and Cheney are in very close contact with their respective treatment programs and have a lot of overlap. This PA would imagine more cooperation in the near future, as both these doctors want to make some headway with this disease.
This PA would also recommend Custom Probiotics formula without d-lactate. The previously mentioned probiotics along with Custom Probiotics all are without d-lactate. Recent information leans towards using Probiotics without d-lactate. This PA recently read of a Probiotic that is being developed to inhibit Oxalates in the gut. Yakult is another probiotic viewed favorably by the CFS/ME community. Unfortunately Yakult is a milk product and has sugar in it. L. casei Shirota is seen as a very beneficial probiotic and hopefully it will emerge in another form.
There is a nice little blog entry that talks about probiotics.
This Patient Advocate has a model in his head for trying to deal with this disease. His idea is that dealing with CFS/ME is like building a table. You need to get the legs firmly attached. The table needs to be able to stand up and take some weight. The legs of the table vary in character and number, but the patient has to get all the legs firmly planted in order to move on with more sophisticated and targeted treatments. Get the table strong and you can pile things on it. In this PA’s case the legs for his table is thyroid/adrenal, resting and pacing, gut ecology, and diet. Once these situations are stabilized - which is not so easy - the immune system will strengthen, and further treatment, like live cell or anti-virals can be added. Doing it the other way around is a mistake. This approach is closely connected to Dr. Dale Guyer’s treatment of CFS/ME. It also intersects with many other practitioners' ideas.
Whether gut dysbiosis is cause or a result of CFS/ME is not known at this time. In either case most people familiar with this illness believe that it needs to be treated. Dr. Cheney has said that none of his treatment will work until the gut is straightened out. This is the general consensus, and a Patient Advocate or patient would be well serve to take note of this advice.
While both diet and gut ecology are important elements, it is the rare individual who can get betterment through one treatment. Dr. Cheney states unequivocally that diet changes cannot cure CFS/ME. He does however believe that diet is a factor that needs to be addressed, and he has his recommendations on his new Cheney research site, available for a fee at cheneyresearch.com
Dr. Myhill also has her recommendations about food available at her website, drmyhill.co.uk. She also has a host of other recommendations on this site. Dr. Terry Wahls in Iowa , who has stabilized and reversed her own MS, has various dietary recommendations in her book Minding your Mitochondria. Dr. Wahls is careful about making generalized claims for her recommendations, stating only that these dietary changes were on benefit to her. However, her startling story makes one sit up and pay attention. Dr Wahls is trying to do some clinical trials involving her diet, but so far has been unsuccessful in getting this going.
Gut dysbiosis is an interesting problem. Doctors like de Meirleir or Bested and Logan see gut dysbiosis as being a central part of treatment. Others, like Dr. Leo Galland, have made a long time connection between chronic illness and gut health.
Gut ecology is best viewed with the matrix of contemporary Afghanistan in mind. It is a complex, difficult and longstanding struggle between competing systems or ideologies. It is the good guys and the bad guys. Tipping the balance towards the good is a difficult and lengthy endeavor. It takes hard work. Progress can be made and then backsliding can occur and the problem has to be addressed again.
Candida is a good example. My daughter has high candida antibodies. In other words she is sensitive to candida. She takes antigen drops for candida. Frontline treatment of candida involve diflucan and nystatin. These drugs are very successful in killing candida. Sometimes patients get real betterment at this point. For one sensitive to candida, the fix can be temporary and the candida can persistent. In other words it can come back.
Something additional needs to be done to keep candida in check. This most obviously involves dietary changes that starve the candida. Sugar and simple carbohydrates need to be avoided. The diet is quite strict. Often certain fruits and fruit juices need to be cut out. One can search out anti-candida diets - but they are generally what Dr. Cheney or Dr. Myhill or Dr de Meirleir propose – low to moderate protein, low carbs, high vegetable diets.
Testing for candida and other forms of gut dysbiosis can be done through a complete diagnostic stool samples – tests that are easily done out of the home. They can be ordered through Metametrix, Genovas, Redlabs, BE, and Diagnostechs. Rich van Konynenburg recommends the Diagnostechs test. Each test has something to offer. Some are easier to do than others. Follow-up tests can gauge progress. Other tests that provide reliable markers for gut dysbiosis and candida activity are the organic acids test and the amino acids test. This Patient Advocate uses Great Plains for the OAT and Doctors Data for the Amino Acids. These tests can be used to measure deficiencies and also to track progress. The PA has learned, with the help of others, principally Rich van Konynenburg, how to interpret or “read” these tests. Another useful test for tracking Hydrogen Sulfide production in the urine is available through Prohealth.
Probiotics are seen as a linchpin in gut ecology. Probiotics are the good guys and they settle in and contest with the bad guys - or at least they try to. In CFS/ME it is difficult to get the probiotics to colonize or stick in the gut. Measurements of good bacteria remain low in spite of heavy probiotic supplementation. Various things, either endemic to the illness, or unknown items, conspire against the colonization of good bacteria. The good bacteria gets swept out of the gut either the result of immune dysfunction or the cause of immune dysfunction.
Some probiotics are seen as better than others. Different doctors or researchers have different ideas about probiotics. Probiotics have become more widely studied in the past 15 years and are generally surfacing as having general and specific health benefits. Many claims of probiotic benefits are made but few are substantiated. More testing and trials of Probiotics are going on at the present time. The NYTimes had an article on Probiotics in the Science section on Tuesday September 29, 2009.
One can look at gut motility as a problem of good bacteria sticking. One can look at small intestinal bacterial overgrowth (SBIO) as a source of difficulties. Certainly one can rotate probiotics - and see if some work better than others. The New York Times article mentioned several well-tested (in specific situations) probiotics. These include lactobacillus GG or Culturelle, and Align, a bifidobacterium infantis 35624. Both are seen as potentially helpful in CFS/ME, and both are available in drugstores throughout the United States. Mutaflor, a probiotic Nissel1917, is available from Germany and is recommended by both de Meirleir and Cheney. de Meirleir and Cheney are in very close contact with their respective treatment programs and have a lot of overlap. This PA would imagine more cooperation in the near future, as both these doctors want to make some headway with this disease.
This PA would also recommend Custom Probiotics formula without d-lactate. The previously mentioned probiotics along with Custom Probiotics all are without d-lactate. Recent information leans towards using Probiotics without d-lactate. This PA recently read of a Probiotic that is being developed to inhibit Oxalates in the gut. Yakult is another probiotic viewed favorably by the CFS/ME community. Unfortunately Yakult is a milk product and has sugar in it. L. casei Shirota is seen as a very beneficial probiotic and hopefully it will emerge in another form.
There is a nice little blog entry that talks about probiotics.
This Patient Advocate has a model in his head for trying to deal with this disease. His idea is that dealing with CFS/ME is like building a table. You need to get the legs firmly attached. The table needs to be able to stand up and take some weight. The legs of the table vary in character and number, but the patient has to get all the legs firmly planted in order to move on with more sophisticated and targeted treatments. Get the table strong and you can pile things on it. In this PA’s case the legs for his table is thyroid/adrenal, resting and pacing, gut ecology, and diet. Once these situations are stabilized - which is not so easy - the immune system will strengthen, and further treatment, like live cell or anti-virals can be added. Doing it the other way around is a mistake. This approach is closely connected to Dr. Dale Guyer’s treatment of CFS/ME. It also intersects with many other practitioners' ideas.
Whether gut dysbiosis is cause or a result of CFS/ME is not known at this time. In either case most people familiar with this illness believe that it needs to be treated. Dr. Cheney has said that none of his treatment will work until the gut is straightened out. This is the general consensus, and a Patient Advocate or patient would be well serve to take note of this advice.
Wednesday, September 23, 2009
Dr. Derek Enlander
Dr. Derek Enlander has a practice in New York City. His office is in midtown NY, on 69th and Fifth Avenue. Dr. Enlander has been treating CFS for many years. Originally hailing from Belfast, Ireland, Dr.Enlander got sidetracked into CFS/ME in the early 1990’s, trying to solve a fatigue problem of a childhood friend with ME. Many doctors and researchers get entangled in this CFS/ME field through chance. They either have (or have had) the disease themselves, or have tried to help a friend or relative. Many years later, Dr. Enlander is seen as one of the top CFS doctors in the world.
Dr. Enlander is a very bright, kind and thorough doctor who has a great deal of experience with CFS/ME. Before he devoted himself to the field of ME, he studied the relationship of Epstein Barr virus to cancer. He came to New York as Assistant Professor of Medicine at Columbia University, and then served as Associate Director of Nuclear Medicine at New York University (NYU). He is now in private practice with extensive professional connections in the field, especially in Israel, the UK, Ireland and Europe. Dr. Enlander serves as Physician-in-Waiting to the British Royal Family and to several members of the British government during their visits to New York.
Dr. Enlander takes a detailed history and does a full physical for new patients. He orders a complete set of tests, done through Quest or Focus labs. His evaluation of the patient is then made.
His treatment protocol revolves around a chance encounter in the 1990’s with Kutapressin. In a Texas study Kutapressin, a peptide from pig livers, was found to bring benefit to a number of CFS patients. Dr. Enlander tested the compound with a variety of additional substances and was able to increase the efficacy of Kutapressin. Enlander says that 67% of his patients show improvement on his combination weekly injections. These injections are not a cure. These combo IM injections include Hepapressin (Kutapressin is no longer produced by Schwartz Pharmacy), cynacobalamin, glutathione, Calphosan, magnesium sulfate, folic acid and trace minerals. He also uses several other products, principally Immunoprop, Immunoplus, and Electrolyte made by Immunoprop Pharmacy. Dr. Enlander also uses Low Dose Naltrexone.
Dr. Enlander is seen as a kind and compassionate doctor. In reality he is reserved and can even by seen as shy. However, once he starts speaking people listen very carefully. I have seen him gives presentations on several occasions. There is nothing flashy about his lectures, but he presents a convincing authority and delivers diagnostic information without alot of flourishes.
Dr. Enlander is heavily involved in research for ME/CFS. He works closely with various other CFS doctors and researchers, including Dr. de Meirleir and Dr. Jonathan Kerr. He is currently doing a study with de Meirleir on Nexavir suppositories. He also communicates with Dr. Jose Montoya - as Dr. Enlander has a particular interest in antiviral treatment, especially with Valcyte for HHV6. Dr. Enlander also is involved with the new ME research group in Europe. Dr. Enlander will be giving a talk at the NYCFS/ME conference on October 18, 2009 in Eatontown, NJ. Dr. Susan Levine will also be giving a presentation at this conference..
Dr. Enlander is a very bright, kind and thorough doctor who has a great deal of experience with CFS/ME. Before he devoted himself to the field of ME, he studied the relationship of Epstein Barr virus to cancer. He came to New York as Assistant Professor of Medicine at Columbia University, and then served as Associate Director of Nuclear Medicine at New York University (NYU). He is now in private practice with extensive professional connections in the field, especially in Israel, the UK, Ireland and Europe. Dr. Enlander serves as Physician-in-Waiting to the British Royal Family and to several members of the British government during their visits to New York.
Dr. Enlander takes a detailed history and does a full physical for new patients. He orders a complete set of tests, done through Quest or Focus labs. His evaluation of the patient is then made.
His treatment protocol revolves around a chance encounter in the 1990’s with Kutapressin. In a Texas study Kutapressin, a peptide from pig livers, was found to bring benefit to a number of CFS patients. Dr. Enlander tested the compound with a variety of additional substances and was able to increase the efficacy of Kutapressin. Enlander says that 67% of his patients show improvement on his combination weekly injections. These injections are not a cure. These combo IM injections include Hepapressin (Kutapressin is no longer produced by Schwartz Pharmacy), cynacobalamin, glutathione, Calphosan, magnesium sulfate, folic acid and trace minerals. He also uses several other products, principally Immunoprop, Immunoplus, and Electrolyte made by Immunoprop Pharmacy. Dr. Enlander also uses Low Dose Naltrexone.
Dr. Enlander is seen as a kind and compassionate doctor. In reality he is reserved and can even by seen as shy. However, once he starts speaking people listen very carefully. I have seen him gives presentations on several occasions. There is nothing flashy about his lectures, but he presents a convincing authority and delivers diagnostic information without alot of flourishes.
Dr. Enlander is heavily involved in research for ME/CFS. He works closely with various other CFS doctors and researchers, including Dr. de Meirleir and Dr. Jonathan Kerr. He is currently doing a study with de Meirleir on Nexavir suppositories. He also communicates with Dr. Jose Montoya - as Dr. Enlander has a particular interest in antiviral treatment, especially with Valcyte for HHV6. Dr. Enlander also is involved with the new ME research group in Europe. Dr. Enlander will be giving a talk at the NYCFS/ME conference on October 18, 2009 in Eatontown, NJ. Dr. Susan Levine will also be giving a presentation at this conference..
Thursday, September 3, 2009
Terry Wahls
The Patient Advocate will spend a great many hours on the internet noodling around, trying to find things that will help his daughter. After hours and hours of doing this, the PA will learn what threads to follow, or what supplements or drugs to research. For instance this morning the PA was reading again about Garth Nicholson and NT Factor. The PA has known about Dr. Nicholson for many years and was able to meet and talk with him in London this year. Dr Nicholson gave a fascinating lecture at the May conference. It is available on the DVD of the conference. He has a website at immed.org. In doing extensive reading on the internet about chronic illness, the PA learns many things about medicine, both alternative and mainstream. Occasionally the PA will stumble over items that have great allure - they hold out great possiblities for treatment of various illnesses- while at the same time having serious detractors. Such a drug is Dimebon. Dimebon, which was stumbled upon while researching mitochondria, is not without controversy. Perhaps you have read about it? Google alerts can be set on a word, and the alert will come up anytime a new mention of the item appears on the internet. In this way the PA follows a number of drugs. In January 2009 this PA stumbled on a radio interview with Dr. Terry Wahls. Dr. Wahls, a medical doctor in Iowa, has reversed her MS. Hers is an amazing story, and challenges fundamental concepts about illness. Dr. Wahls is a strong advocate of the connection of diet and the brain. Her website and blog lay out her ideas and experiences. Much of her information is free. She has written a number of books. Books or DVD presentations that can be purchased on her wesite; terrywahls.com. Her most recent book is Minding Your Mitochondria. Dr Wahls recently posted a study that measured glutathione in the brains of MS patients. For those of you who are interested in diet and mitochodria, this PA suggests that you check her blog: terrywahls.blogspot.com.
Sunday, August 30, 2009
Doctors
It is important for a CFS/ME patient to have a sympathetic doctor - a doctor who knows something about this disease. Often it is good to have a number of doctors. But first it is important to have one doctor who is willing to be flexible in treatments, and willing to sign requisitions for testing. Additionally, a patient might want to have a good allergist, or a doctor who knows something about gut dysbiosis - and another one who knows something about thyroid and adrenal problems. The list goes on. This Patient Advocate believes that finding and keeping a supportive doctor is difficult. Most doctors have never heard of CFS/ME, and if they have, they are disbelieving. The same holds true for lyme disease patients. It is really important to find help. This CFS/ME illness exists beyond most doctor’s learning - and beyond their experience. This PA has talked to many doctors and many of them are mute when you tell them the situation - and we know for sure that doctors are not usually at a loss for words. Finding good doctors is a major problem for the patient with CFS/ME.
There are a number of doctors who will deal with CFS patients, or who even specialize in this illness. They are willing to spend long hours with the patient. Most doctors are willing to spend ten minutes with a patient. Such a formula does not work with this illness. Instead the CFS doctor has to be more like a 19th century doctor. The CFS doctor works with symptoms, tests - and mostly with trial and error. Without a good doctor the CFS patient is at a great disadvantage.
If the patient is ambulatory, he or she can travel to a CFS doctor. In NYC, there are a number of known CFS doctors: Susan Levine, Derek Enlander, Leo Galland and others. People can say different things about each of these doctors - and they do- but each of them will wrestle with this disease – and that is admirable. In CA, there are doctors such at Hortoff, Chia, and Montoya. Cheney is in North Carolina, Shoemaker in MD, Patricia Salvato in Texas, Guyer in Indiana, Vrchota in MN, and Lerner in MI. There are others in the UK, Australia, NZ, and Belgium. This is not a complete list.
In general, these doctors are expensive. Sometimes insurance will cover costs of the physician and the tests. At other times, insurance, whether private or Medicare, will not touch these expenses. It is a running battle to get any refund. Most testing and treatment possibilities are seen as “experimental”. No one knows what causes this disease. There is no recognized pathology, no clear diagnoses and certainly no confirmed treatment. Consequently it always comes as a surprise when Medicare or private insurance will reimburse something. Their choices seem almost whimsical. There is no logic to any financial relief for this disease. Obamacare, in whatever form, will not make a dent in the problem of CFS/ME expenses. It is a difficult situation to get one’s mind around, but the patient (and the PA) are on their own here. Economics determines what tests and treatment are undertaken. CFS/ME is a very expensive disease.
The situation for a housebound CFS patient is more dire. This Patient Advocate is not aware of any doctors who will make home visits. Certainly in MN, with its managed care, home visits are off the table. It is difficult to get anyone with knowledge of this illness to come into the home. de Meirleir, based in Brussels, will make home visits in Norway and Australia. Ironically he is the best possibility to come to MN. He is interested in going where the action is. Others do not bother, and only see CFS patients who can struggle to their office. Of course, these doctors are afraid of having their licenses revoked for one reason or another. This is not an idle threat.
Various doctors offer phone consultations. These are less medical diagnostics, and more educational sessions designed to discuss possibilities. These phone consults, which are expensive, allow the patient or the PA to learn the specific options of treatment. Much of this treatment is general in nature, involving acupuncture, supplements, diet changes, resting and pacing programs, thyroid dosing or balancing gut ecology. It is like the 19th century - try this, try that. This instruction can be woven in with more specific diagnostic recommendations that will come from a doctor close at hand.
The PA, over time, has kept his eyes and ears open for doctors who might be helpful. Some doctors are more available that others. For instance recently this PA tried to contact Dr. A. Martin Lerner. The PA had heard of Dr. Lerner and his practice for a number of years. Dr. Lerner, an elderly gentleman, has the most experience in antiviral treatment for CFS. Dr. Lerner himself had CFS, and treated it with antivirals. The PA has seen Dr. Lerner give presentations in London in May 2008 and in Baltimore in June 2008. The PA wrote Dr. Lerner seeking a consultation with him at his office. Dr. Lerner replied, saying that this would not be possible. Eventually Dr. Lerner will produce a treatment DVD for other doctors and the PA will keep an eye out for this.
Other doctors will talk to the PA on the phone and in this way the PA will seek guidance - as the options are so limited. These conversations are not so much to get answers, but to confirm the direction of treatment. The PA is like a doctor’s assistant, or a fancy delivery boy, gathering information to present to his own patient’s doctor. In this fashion, the PA has bi- monthly phone consultations with one CFS specialist, phone consults or visits with his daughter’s physicians every few months, and educational phone consults with various thyroid specialists. These phone consults are helpful in setting direction for home treatment. However they are not a substitute for getting to a doctor’s office. If the patient is homebound the possibilities are limited.
In this way and others, the Patient Advocate will operate in the world between the chronically ill patient and the medical professional. The PA might talk to doctors, nurses and other medical personnel. The PA does many mundane things like ordering supplies, providing food and money, orders tests, follows up on tests, looks for interpretations of test results, looks for additional testing operations, and looks for additional monies to pay for this situation.
The PA will seek out contact with CFS doctors. In this regard the PA scours the field and identifies the more important or more knowledgeable physicians or researchers. The field of CFS is sufficiently small that the average PA will have no problem learning the ropes. This particular PA has struck up relationships with various people. The circumstances vary from situation to situation. The PA has established a telephone relation with a well-known CFS doctor. This doctor is open to phone consultation, which is very expensive. This doctor knows about the disease and various treatment modalities. He is cautious in his approach in using anti-virals. The PA has been talking to him regularly since August of 2007. The PA went to his office in June 2008 and will do so again.
This Patient Advocate travels to UK for the annual conference in London. During this trip he arranges for consultations with various CFS experts. These conversations, along with the cutting edge information in the conference itself, gives the PA a sufficient amount of actionable information in one area or another. In preparation for these visits, the PA arranges and copies the necessary test results. These must be arranged in a legible form. It is necessary to make selections based on what the PA thinks might be essential for a particular doctor to look at, in order to make some suggestions. The PA is looking to establish a relation with various doctors who have seen a great deal of this disease. The PA is looking for information and advice in various areas: viral treatments, gut dysbiosis, thyroid regulation, diet and exercise, sleep, and so forth.
So far, the Patient Advocate has been presenting the nitty-gritty of the life of a PA. The picture that he presents demonstrates that this occupation takes time – lots of time. It also takes lots of money. We have seen that the patient is incapacitated and cannot support herself in any way at all. We have seen that the patient lives in another city, a thousand miles away. All this costs money. What about food? What about supplements? Who pays for the heat? Where does the money come from to pay the doctor? It has been reported that an hour conversation with a good doctor costs $535, or a conversation with the thyroid specialist - $4.50 a minute. Who pays for this stuff? Where does them money come from? What about medicine, what about the phlebotomist? Surely insurance covers these expenses. Surely the PA and the patient don’t have to pay everything out of pocket? Who could afford such things? It is unthinkable. Certainly the government should help pay for this? No, the government does not pay a cent. No, insurance will also not pay a cent. You are on your own. Choices have to be made. These choices can have great consequence for the patient.
There are a number of doctors who will deal with CFS patients, or who even specialize in this illness. They are willing to spend long hours with the patient. Most doctors are willing to spend ten minutes with a patient. Such a formula does not work with this illness. Instead the CFS doctor has to be more like a 19th century doctor. The CFS doctor works with symptoms, tests - and mostly with trial and error. Without a good doctor the CFS patient is at a great disadvantage.
If the patient is ambulatory, he or she can travel to a CFS doctor. In NYC, there are a number of known CFS doctors: Susan Levine, Derek Enlander, Leo Galland and others. People can say different things about each of these doctors - and they do- but each of them will wrestle with this disease – and that is admirable. In CA, there are doctors such at Hortoff, Chia, and Montoya. Cheney is in North Carolina, Shoemaker in MD, Patricia Salvato in Texas, Guyer in Indiana, Vrchota in MN, and Lerner in MI. There are others in the UK, Australia, NZ, and Belgium. This is not a complete list.
In general, these doctors are expensive. Sometimes insurance will cover costs of the physician and the tests. At other times, insurance, whether private or Medicare, will not touch these expenses. It is a running battle to get any refund. Most testing and treatment possibilities are seen as “experimental”. No one knows what causes this disease. There is no recognized pathology, no clear diagnoses and certainly no confirmed treatment. Consequently it always comes as a surprise when Medicare or private insurance will reimburse something. Their choices seem almost whimsical. There is no logic to any financial relief for this disease. Obamacare, in whatever form, will not make a dent in the problem of CFS/ME expenses. It is a difficult situation to get one’s mind around, but the patient (and the PA) are on their own here. Economics determines what tests and treatment are undertaken. CFS/ME is a very expensive disease.
The situation for a housebound CFS patient is more dire. This Patient Advocate is not aware of any doctors who will make home visits. Certainly in MN, with its managed care, home visits are off the table. It is difficult to get anyone with knowledge of this illness to come into the home. de Meirleir, based in Brussels, will make home visits in Norway and Australia. Ironically he is the best possibility to come to MN. He is interested in going where the action is. Others do not bother, and only see CFS patients who can struggle to their office. Of course, these doctors are afraid of having their licenses revoked for one reason or another. This is not an idle threat.
Various doctors offer phone consultations. These are less medical diagnostics, and more educational sessions designed to discuss possibilities. These phone consults, which are expensive, allow the patient or the PA to learn the specific options of treatment. Much of this treatment is general in nature, involving acupuncture, supplements, diet changes, resting and pacing programs, thyroid dosing or balancing gut ecology. It is like the 19th century - try this, try that. This instruction can be woven in with more specific diagnostic recommendations that will come from a doctor close at hand.
The PA, over time, has kept his eyes and ears open for doctors who might be helpful. Some doctors are more available that others. For instance recently this PA tried to contact Dr. A. Martin Lerner. The PA had heard of Dr. Lerner and his practice for a number of years. Dr. Lerner, an elderly gentleman, has the most experience in antiviral treatment for CFS. Dr. Lerner himself had CFS, and treated it with antivirals. The PA has seen Dr. Lerner give presentations in London in May 2008 and in Baltimore in June 2008. The PA wrote Dr. Lerner seeking a consultation with him at his office. Dr. Lerner replied, saying that this would not be possible. Eventually Dr. Lerner will produce a treatment DVD for other doctors and the PA will keep an eye out for this.
Other doctors will talk to the PA on the phone and in this way the PA will seek guidance - as the options are so limited. These conversations are not so much to get answers, but to confirm the direction of treatment. The PA is like a doctor’s assistant, or a fancy delivery boy, gathering information to present to his own patient’s doctor. In this fashion, the PA has bi- monthly phone consultations with one CFS specialist, phone consults or visits with his daughter’s physicians every few months, and educational phone consults with various thyroid specialists. These phone consults are helpful in setting direction for home treatment. However they are not a substitute for getting to a doctor’s office. If the patient is homebound the possibilities are limited.
In this way and others, the Patient Advocate will operate in the world between the chronically ill patient and the medical professional. The PA might talk to doctors, nurses and other medical personnel. The PA does many mundane things like ordering supplies, providing food and money, orders tests, follows up on tests, looks for interpretations of test results, looks for additional testing operations, and looks for additional monies to pay for this situation.
The PA will seek out contact with CFS doctors. In this regard the PA scours the field and identifies the more important or more knowledgeable physicians or researchers. The field of CFS is sufficiently small that the average PA will have no problem learning the ropes. This particular PA has struck up relationships with various people. The circumstances vary from situation to situation. The PA has established a telephone relation with a well-known CFS doctor. This doctor is open to phone consultation, which is very expensive. This doctor knows about the disease and various treatment modalities. He is cautious in his approach in using anti-virals. The PA has been talking to him regularly since August of 2007. The PA went to his office in June 2008 and will do so again.
This Patient Advocate travels to UK for the annual conference in London. During this trip he arranges for consultations with various CFS experts. These conversations, along with the cutting edge information in the conference itself, gives the PA a sufficient amount of actionable information in one area or another. In preparation for these visits, the PA arranges and copies the necessary test results. These must be arranged in a legible form. It is necessary to make selections based on what the PA thinks might be essential for a particular doctor to look at, in order to make some suggestions. The PA is looking to establish a relation with various doctors who have seen a great deal of this disease. The PA is looking for information and advice in various areas: viral treatments, gut dysbiosis, thyroid regulation, diet and exercise, sleep, and so forth.
So far, the Patient Advocate has been presenting the nitty-gritty of the life of a PA. The picture that he presents demonstrates that this occupation takes time – lots of time. It also takes lots of money. We have seen that the patient is incapacitated and cannot support herself in any way at all. We have seen that the patient lives in another city, a thousand miles away. All this costs money. What about food? What about supplements? Who pays for the heat? Where does the money come from to pay the doctor? It has been reported that an hour conversation with a good doctor costs $535, or a conversation with the thyroid specialist - $4.50 a minute. Who pays for this stuff? Where does them money come from? What about medicine, what about the phlebotomist? Surely insurance covers these expenses. Surely the PA and the patient don’t have to pay everything out of pocket? Who could afford such things? It is unthinkable. Certainly the government should help pay for this? No, the government does not pay a cent. No, insurance will also not pay a cent. You are on your own. Choices have to be made. These choices can have great consequence for the patient.
Thursday, August 20, 2009
Disbelief
I got a call from a friend of a friend today. This person has a 26 year old girlfriend who has recently become sick. The couple was on a vacation in Tuscany when the gal got sick. Her chief complaint is migrating multiple joint pain and stiffness. She also has fatigue in the early part of the day, and light sensitivity. She has had two unspecified Lyme tests, one positive, one negative. Based on this, a doctor at a clinic started the patient on an antibiotic. Another doctor diagnosed Lupus and took the patient off the antibiotic, as antibiotics are counter-indicated in Lupus. The fellow was looking for some advice. All this was strange and mystifying to him and he did not know what to do. His friend Danny arranged for him to talk to me.
I remember when I too was in disbelief, but I dropped it pretty fast and decided to learn what I could about Lyme disease, CFS, ME and other strange diseases. I recommended to this fellow that he start reading about Lyme disease and find a good LLMD. None of these diseases are benign phenomenas -but Lyme is in a special category. You have a window of time in which to get a good clinical diagnoses and get treatment. Lyme disease can be treated by a good physician. It is necessary to go to a good physician who knows something about the disease. I suggested Dr. Daniel Cameron in Mt. Kisco, NY. There are many other in the surrounding states.
My job, under these circumstances, is to deliver a message. I realize that I cut right down to the fundamental issue and what I say comes across as pretty strong and perhaps harsh. I worry about this, about appearing "insane", but what I worry about more is the disbelief factor, which only guarantees years of deep and unabiding misery.
I had another friend this summer who got Lyme disease. His doctor put him in the hospital thinking that he had a blood clot. Hearing his symptoms, I told my friend that he had Lyme disease and to find a good doctor. A few months later he now is in contact with a good doctor, but it took time, as no one in modern life can believe the circumstances surrounding this disease and its treatment and complications.
I remember when I too was in disbelief, but I dropped it pretty fast and decided to learn what I could about Lyme disease, CFS, ME and other strange diseases. I recommended to this fellow that he start reading about Lyme disease and find a good LLMD. None of these diseases are benign phenomenas -but Lyme is in a special category. You have a window of time in which to get a good clinical diagnoses and get treatment. Lyme disease can be treated by a good physician. It is necessary to go to a good physician who knows something about the disease. I suggested Dr. Daniel Cameron in Mt. Kisco, NY. There are many other in the surrounding states.
My job, under these circumstances, is to deliver a message. I realize that I cut right down to the fundamental issue and what I say comes across as pretty strong and perhaps harsh. I worry about this, about appearing "insane", but what I worry about more is the disbelief factor, which only guarantees years of deep and unabiding misery.
I had another friend this summer who got Lyme disease. His doctor put him in the hospital thinking that he had a blood clot. Hearing his symptoms, I told my friend that he had Lyme disease and to find a good doctor. A few months later he now is in contact with a good doctor, but it took time, as no one in modern life can believe the circumstances surrounding this disease and its treatment and complications.
Wednesday, August 19, 2009
Advice to a friend
What I can say is this, and I am very clear on my idea here because my life has been altered by my daughter's situation.(I am not complaining.) I think that the chronically ill patient has to attend to their illness full time, as though it were a brain tumor or a serious heart defect. I think treating the illness has to be put number one in the life of the patient, and any other position is taken at the patient's peril. I know this from experience. This disease can get much worse and then it can be life altering. A fellow at the CFS conference in Reno this spring told me this: "CFS is not the worst of the diseases but it is the cruelest". CFS robs the patient without the patient even knowing it. The patient can never quite grasp what is happening, and stands on the edge of a precipice but does not know it. The patient feels they are half well and getting better, while mostly they are in a stasis situation sitting on the edge of a sharp and deep precipice. The most unlikely thing will send them into the abyss. It is totally impossible for the patient to see this, and to see what is coming, or to see how serious this, is and to put it number one in life. The patient soldiers on, marching along to oblivion. I had a instinct with my daughter at the very beginning that this was something dangerous, but the half speed nature of it disallows the patient to believe it. This is one of the great cruelties of the disease - that it does not announce itself in a way that is believable and does not give sufficient warning, like a brain tumor does. But the consequences can be the same. This disease has the capacity to be life altering in all cases. Not all cases go this way, but there is no way to know how messed up your brain and immune system really are.
On more thing: don't expect anything from Obama and his bureaucrats - just like you wouldn't expect anything from Bush and his bureaucrats. You are on your own here. Don't expect much support from family and friends. They too have troubled processing this information. Even well-meaning folk cannot believe this disease. As far as they are concerned the patient is removed from the game of life. The CFS/ME patient is a non-player in the game of life. This is one of the harsh realities that the patient and the Patient Advocate have to deal with.
On more thing: don't expect anything from Obama and his bureaucrats - just like you wouldn't expect anything from Bush and his bureaucrats. You are on your own here. Don't expect much support from family and friends. They too have troubled processing this information. Even well-meaning folk cannot believe this disease. As far as they are concerned the patient is removed from the game of life. The CFS/ME patient is a non-player in the game of life. This is one of the harsh realities that the patient and the Patient Advocate have to deal with.
Thyroid again
Information about treating thyroid in the CFS/ME patient can be confusing. Perhaps the PA will be told that the treatment needs to be temporary, while at the next moment he is told that it is for the lifetime of the patient. Perhaps the PA will read that the hormone therapy will lose its effectiveness over time and there will be a back-siding, while at another time he will be told that the patient's need for thyroid hormone will diminish over time. These are radically different pieces of information and yet they are both there for consideration. It is confusing isn't it? Certainly one consistent idea it that the adrenals need to be supported when doing thyroid hormone replacement. This area of adrenal support is another nightmare, as it is difficult to measure adrenal function and so many doctors do not even believe in adrenal fatigue. There is no way to know which adrenal support is doing it's job and how well. Speculation is at its highest in this area of treatment. For instance my daughter takes a flash frozen live cell product from Douglas Labs, which is supposed to support the adrenals and help them heal. It is a very expensive product and there is no measurable or felt evidence that it provides any support.
Different thyroid hormones and their combinations have different and subtle effects and need to be balanced carefully. Most people with thyroid problems and CFS use Armour Thyroid, a desiccated natural product. However there are many exceptions and some used synthetics and synthetic combinations and others use Cytomel, either in low dose or high dose, depending on the situation. Sometimes a patient can be allergic or have a sensitivity to a thyroid or adrenal medication and get an uncomfortable feeling using it. At other times a hormone might not feel like it is doing any good, and the amount need to be raised. Raising the thyroid hormone to the optimal level is another tricky business. It is a delicate balance to find the zone where the thyroid is doing the most good and yet it is not provoking additional problems, like hyper feelings. It can take some time to get to the optimal level, and feel confident that the patient is really getting the maximum benefit of the treatment. The titrating up of the hormone is a trial and error process that is not without a welter of confusions, counter-indications and misdirections. For instance there are two additionally complicating situations: thyroid hormone resistance and reverse t3 syndrome. Both can be regulated by switching from Armour thyroid to straight t3 - either partially or completely. Any change is thyroid hormone therapy is fraught with ambiguity and a sense of precariousness. Testing of free t3 and free t4 along with antibodies and ferritin levels can give a modicum of direction, but nothing in which you really have complete confidence. There are objective targets to aim at in terms of hormone levels in the blood, but that tells you very little about what is actually in the tissue. For various reasons it is often difficult to raise the free t3 into the upper half of the normal range. This can be for various reasons, and for no reason. Certain thyroid/CFS doctors will discount the tests or ignore them completely, going strictly on patient improvement. If the patient feels better, if the patient's hypothyroid symptoms are diminishing, this is good. If the patient is hyper, this is bad - like that. Some doctors say that thyroid hormone is completely safe for the patient, others say that thyroid hormone therapy can cause osteoporosis and a host of other things. The Patient Advocate has to figure this out on his own. The bottom line in thyroid replacement therapy is that the patient or the Patient Advocate has to educate themselves on the risks and benefits of the treatment and learn all the ins and outs of therapy and work closely with a doctor. This really means that the patient has to use a doctor to guide the patient's own treatment. This is not as radical as in sounds. Every successfully managed type 1 diabetic in the world knows the most about his or her situation and makes all the major medical decisions, working with a good doctor. If the patient relies completely on a doctor in these complex self-managing situations, the patient will end up in the soup.
Different thyroid hormones and their combinations have different and subtle effects and need to be balanced carefully. Most people with thyroid problems and CFS use Armour Thyroid, a desiccated natural product. However there are many exceptions and some used synthetics and synthetic combinations and others use Cytomel, either in low dose or high dose, depending on the situation. Sometimes a patient can be allergic or have a sensitivity to a thyroid or adrenal medication and get an uncomfortable feeling using it. At other times a hormone might not feel like it is doing any good, and the amount need to be raised. Raising the thyroid hormone to the optimal level is another tricky business. It is a delicate balance to find the zone where the thyroid is doing the most good and yet it is not provoking additional problems, like hyper feelings. It can take some time to get to the optimal level, and feel confident that the patient is really getting the maximum benefit of the treatment. The titrating up of the hormone is a trial and error process that is not without a welter of confusions, counter-indications and misdirections. For instance there are two additionally complicating situations: thyroid hormone resistance and reverse t3 syndrome. Both can be regulated by switching from Armour thyroid to straight t3 - either partially or completely. Any change is thyroid hormone therapy is fraught with ambiguity and a sense of precariousness. Testing of free t3 and free t4 along with antibodies and ferritin levels can give a modicum of direction, but nothing in which you really have complete confidence. There are objective targets to aim at in terms of hormone levels in the blood, but that tells you very little about what is actually in the tissue. For various reasons it is often difficult to raise the free t3 into the upper half of the normal range. This can be for various reasons, and for no reason. Certain thyroid/CFS doctors will discount the tests or ignore them completely, going strictly on patient improvement. If the patient feels better, if the patient's hypothyroid symptoms are diminishing, this is good. If the patient is hyper, this is bad - like that. Some doctors say that thyroid hormone is completely safe for the patient, others say that thyroid hormone therapy can cause osteoporosis and a host of other things. The Patient Advocate has to figure this out on his own. The bottom line in thyroid replacement therapy is that the patient or the Patient Advocate has to educate themselves on the risks and benefits of the treatment and learn all the ins and outs of therapy and work closely with a doctor. This really means that the patient has to use a doctor to guide the patient's own treatment. This is not as radical as in sounds. Every successfully managed type 1 diabetic in the world knows the most about his or her situation and makes all the major medical decisions, working with a good doctor. If the patient relies completely on a doctor in these complex self-managing situations, the patient will end up in the soup.
Monday, August 17, 2009
Gut dysbiosis
As my patient rests in her room there are a number of things that can be done for her. This does not include brain scans or sleep studies. The time for doing these things has passed. We missed our opportunity with these items, for better or worse. These tests should have been done when the patient could move around a bit. It is a lesson to be learned for others. Pay attention to this disease when you have the chance. Thinking it will go away on its own is wishful thinking. The patient has to get involved. All patients who improve from this disease get involved in their own betterment. Betterment will not come on its own, and it will not come to those who are not able to get involved. This disease is not for the faint of heart.
There are clear areas where the Patient Advocate and the housebound patient can work together. Many tests are available – blood, urine, saliva and stool samples – and can to be done in the home. In this regard we live in a quite amazing age. The problem with these tests is that they are deemed experimental and are not reimbursable in most instances - and don’t count on Obamacare to take care of this. Obamacare will pass over CFS/ME.
I have spoken elsewhere of the importance of assessing the thyroid, and regulating it, if it is determined to be necessary. It is best to work with a good doctor here. I have spoken about the importance of eating an organic diet, low carb, with modest animal protein and plenty of fresh vegetable. Drinking the right water is important. Attention has to be put on everything that the patient puts in her mouth. Don’t expect to hear much about this from a doctor. A few doctors – de Meirleir or Dr. Rae – work with a nutritionist. Many doctors are real squishy on diet and the Patient Advocate is on his own here. Fortunately there is a huge amount of information on the internet, although much of it is controversial. Sleep is another very important variable that can be dealt with in the home. It is important to find out if sleep apnea is present. Sleep apnea has a treatment.
Another very important area to look at is the gut. Many CFS patients have gut dybiosis or leaky gut. This is a situation where molecules pass through the wall and provoke an immune response. This is a situation where pathogens in the gut create havoc, producing excess d-lactate or hydrogen sulfide. It is very helpful to read Leo Galland’s article on leaky gut. http://mdheal.org/leakygut.htm Dr. Teitelbaum also is very good on the subject as is the CFS/ME doc, Dr. Kenny de Meirleir, who is seen as a strong advocate of the involvement of gut dysbiosis in CFS/ME.
The gut is an immense area containing 70% of the immune system. Supposedly if the intestines are laid out flat the surface they are as large as a football field. You can believe this or not. The intestines are a bit like modern day Iraq or Afghanistan, a place where contending forces are at work, where real battles between the forces of good and bad are taking place.
All this activity in the gut is complex and intertwined, often in ways that are not completely understood today. However much work is being done in this area and the connection between various diseases and problems in the gut is being accepted more widely. Ideas that only a few years ago were seen as being kooky are gaining a foothold in standard practice. Years ago, in a different set of health issues, this Patient Advocate read a book by Oliver Sachs called Migraine. Oliver Sachs is a truly fantastic person. This PA was surprised by the connection that was drawn between the gut and the brain in migraine disorders. At the time, it seemed like such a strange idea. The brain is heralded as a complex and important organ, but the intestines do not have the same panache, at least not in modern times. It is all so messy. It was seen as quite different in ancient times up through the nineteenth century. On a humorous notes I remember that fantastic scene in Moliere’s Imaginary Invalid, where the doctor carefully stirs his patients’ diarrhea with his finger, holds it up, and then tastes it.
Diet has an important influence on gut ecology. Everything that the patient puts into her mouth has to be scrutinized. In order to try to determine what is best for the patient, a food allergies test from Genovas can be done. This will tell what foods provoke allergic reaction in the patient - and these foods can be diminished or eliminated. Various allergy clinics deal with food allergies. My patient has been tested extensively for reactions to mold and foods a number of years ago with an allergist, Dr. George K. in Lacrosse, WI. Dr. George K is an excellent doctor, thorough and caring, among the very best imaginable.
Gut dysbiosis can be examined with various tests. Primarily among them are tests done by Genovas. These involve taking several challenge items and measuring the results through a urine test. An Immunobilan test is offered by Redlabs. This test that measures certain IgAs and IgMs. These reading indicate whether provocations exist in the blood, through leaky gut, or whether there is pathogenic activity within the gut itself. Once problems are identified they can be treated. A very simple home test for excess production of hydrogen sulfide has recently been developed. Whether this will have any bearing on treatment remains to be seen. There is some speculation that high levels of enterococcus and streptococcus produce an excess of H2S, and this in turn unleashes a cascade of symptoms. Treatments are currently being proposed for the problem, once it is identified.
The backbone of testing the gut in the CFS/ME patient is the CDSA. This test is offered by several labs, and they differ slightly one from another. Genovas test has been around for a number of years and was recently expanded to a more comprehensive test. Metametrix introduced a test a few years ago using DNA sampling and claims to get the most accurate results. The Metametrix test is called the GI Effects test and measures a host of elements. It is also a relatively patient friendly test. A test also is offered by Diagnostechs called the Expanded Digestive Health panel. This test can be procured on the internet without a doctor’s prescription. Finally there is a Microbial test available from R.E.D. labs in Belgium that directly measures streptococcus and enterococcus.
These tests look at a number of key elements of the gut: potential pathogens, good and bad bacterium, candida, and parasites. Any number of these items can be responsible for destabilizing the intestines and causing dysfunctions of the immune system. Treatments are available for a number of items. Parasites can be killed. Candida can be pushed back with an antifungal - diflucan or nystatin. The relief from candida often is temporary, as some patients, like my daughter, have a high sensitivity to candida. Candida is always a threat to come back. In my patient’s case, treatment with Dyflucan or nystatin brought no noticeable benefit. However the benefit to some can be quite dramatic, once the overgrowth of candida is killed.
In the case of Candida, diet plays a key role. The patient has to eat a diet that starves the suckers. Sugar and anything relating to sugar is the primary culprit here. The patient has to be in the mood to give up “a lot” in order to get the gut in order. Major and continuing dietary changes are necessary. Many folks do not want to make these changes, even though improvements can be seen in those who tighten up their diets.
Many CFS patients eliminate dairy, wheat, sugar, caffeine, alcohol, flour, high carbohydrates, fructose, and nuts in order to get the gut under control. Any potential aggravating source is eliminated. Others will eliminate particulars that have a specific deleterious effect on them. Dr. Myhill recommends eating a Stone Age diet.
Once gut problems are identified, they can be dealt with, either with short-term antibiotics, diet, antifungals, antiparasitics and the introduction of good bacteria, i.e., probiotics.
Probiotics.
In the gut ecology of the CFS patient, the bad guys are seen as winning. Whether this is the cause or an effect of the disease pathology, no one knows. However a number of doctors and researchers now believe that autoimmune diseases originate in the gut- and to defeat these diseases one has to start in the gut. Much of the cutting edge work in Autism involves diet, food allergies and gut ecology.
In this intestinal battle, bad bacteria gets the upper hand. This situation can be with or without overt symptoms. The patient must take step to reverse this situation, and move the gut ecology to a more harmonious balance. The primary tool in the battle, beyond those already mentioned, are Probiotics, Probiotics are good bacteria, found in yogurt and other foods. They also come in supplement form, and in a large variety of combinations. Consuming probiotics is seen as a direct way of balancing the good bacteria with the bad. Probiotics include lactobacillus and bifidobacterium, of different species and in different combinations.
Various probiotics are seen as being good. These include Culturelle, Klaire products, VSL#3, Mutaflor (shipped from Germany), Align, and a host of others. Recently there has been a heightened awareness of lactobacillus that create d-lactate. Excess d-lactate, along with excess H2S, is seen as a marker for increased symptoms. CFS patients are looking for probiotics that do not promote d-lactate.
Good bacteria has to both be introduced into the gut and also allowed to colonize there. Some probiotics just go right through the system. Various elements prohibit the colonization process from taking place and this has to be dealt with. Repeated stool testing can gauge efficacy of the administered probiotics. Probiotics are an amazing subject about which there is much to read. A great deal research is going on at the present time looking for association between particular probiotics and specific diseases, ranging from cancer to schizophrenia. http://qualitycounts.com/fplacto.html
There are clear areas where the Patient Advocate and the housebound patient can work together. Many tests are available – blood, urine, saliva and stool samples – and can to be done in the home. In this regard we live in a quite amazing age. The problem with these tests is that they are deemed experimental and are not reimbursable in most instances - and don’t count on Obamacare to take care of this. Obamacare will pass over CFS/ME.
I have spoken elsewhere of the importance of assessing the thyroid, and regulating it, if it is determined to be necessary. It is best to work with a good doctor here. I have spoken about the importance of eating an organic diet, low carb, with modest animal protein and plenty of fresh vegetable. Drinking the right water is important. Attention has to be put on everything that the patient puts in her mouth. Don’t expect to hear much about this from a doctor. A few doctors – de Meirleir or Dr. Rae – work with a nutritionist. Many doctors are real squishy on diet and the Patient Advocate is on his own here. Fortunately there is a huge amount of information on the internet, although much of it is controversial. Sleep is another very important variable that can be dealt with in the home. It is important to find out if sleep apnea is present. Sleep apnea has a treatment.
Another very important area to look at is the gut. Many CFS patients have gut dybiosis or leaky gut. This is a situation where molecules pass through the wall and provoke an immune response. This is a situation where pathogens in the gut create havoc, producing excess d-lactate or hydrogen sulfide. It is very helpful to read Leo Galland’s article on leaky gut. http://mdheal.org/leakygut.htm Dr. Teitelbaum also is very good on the subject as is the CFS/ME doc, Dr. Kenny de Meirleir, who is seen as a strong advocate of the involvement of gut dysbiosis in CFS/ME.
The gut is an immense area containing 70% of the immune system. Supposedly if the intestines are laid out flat the surface they are as large as a football field. You can believe this or not. The intestines are a bit like modern day Iraq or Afghanistan, a place where contending forces are at work, where real battles between the forces of good and bad are taking place.
All this activity in the gut is complex and intertwined, often in ways that are not completely understood today. However much work is being done in this area and the connection between various diseases and problems in the gut is being accepted more widely. Ideas that only a few years ago were seen as being kooky are gaining a foothold in standard practice. Years ago, in a different set of health issues, this Patient Advocate read a book by Oliver Sachs called Migraine. Oliver Sachs is a truly fantastic person. This PA was surprised by the connection that was drawn between the gut and the brain in migraine disorders. At the time, it seemed like such a strange idea. The brain is heralded as a complex and important organ, but the intestines do not have the same panache, at least not in modern times. It is all so messy. It was seen as quite different in ancient times up through the nineteenth century. On a humorous notes I remember that fantastic scene in Moliere’s Imaginary Invalid, where the doctor carefully stirs his patients’ diarrhea with his finger, holds it up, and then tastes it.
Diet has an important influence on gut ecology. Everything that the patient puts into her mouth has to be scrutinized. In order to try to determine what is best for the patient, a food allergies test from Genovas can be done. This will tell what foods provoke allergic reaction in the patient - and these foods can be diminished or eliminated. Various allergy clinics deal with food allergies. My patient has been tested extensively for reactions to mold and foods a number of years ago with an allergist, Dr. George K. in Lacrosse, WI. Dr. George K is an excellent doctor, thorough and caring, among the very best imaginable.
Gut dysbiosis can be examined with various tests. Primarily among them are tests done by Genovas. These involve taking several challenge items and measuring the results through a urine test. An Immunobilan test is offered by Redlabs. This test that measures certain IgAs and IgMs. These reading indicate whether provocations exist in the blood, through leaky gut, or whether there is pathogenic activity within the gut itself. Once problems are identified they can be treated. A very simple home test for excess production of hydrogen sulfide has recently been developed. Whether this will have any bearing on treatment remains to be seen. There is some speculation that high levels of enterococcus and streptococcus produce an excess of H2S, and this in turn unleashes a cascade of symptoms. Treatments are currently being proposed for the problem, once it is identified.
The backbone of testing the gut in the CFS/ME patient is the CDSA. This test is offered by several labs, and they differ slightly one from another. Genovas test has been around for a number of years and was recently expanded to a more comprehensive test. Metametrix introduced a test a few years ago using DNA sampling and claims to get the most accurate results. The Metametrix test is called the GI Effects test and measures a host of elements. It is also a relatively patient friendly test. A test also is offered by Diagnostechs called the Expanded Digestive Health panel. This test can be procured on the internet without a doctor’s prescription. Finally there is a Microbial test available from R.E.D. labs in Belgium that directly measures streptococcus and enterococcus.
These tests look at a number of key elements of the gut: potential pathogens, good and bad bacterium, candida, and parasites. Any number of these items can be responsible for destabilizing the intestines and causing dysfunctions of the immune system. Treatments are available for a number of items. Parasites can be killed. Candida can be pushed back with an antifungal - diflucan or nystatin. The relief from candida often is temporary, as some patients, like my daughter, have a high sensitivity to candida. Candida is always a threat to come back. In my patient’s case, treatment with Dyflucan or nystatin brought no noticeable benefit. However the benefit to some can be quite dramatic, once the overgrowth of candida is killed.
In the case of Candida, diet plays a key role. The patient has to eat a diet that starves the suckers. Sugar and anything relating to sugar is the primary culprit here. The patient has to be in the mood to give up “a lot” in order to get the gut in order. Major and continuing dietary changes are necessary. Many folks do not want to make these changes, even though improvements can be seen in those who tighten up their diets.
Many CFS patients eliminate dairy, wheat, sugar, caffeine, alcohol, flour, high carbohydrates, fructose, and nuts in order to get the gut under control. Any potential aggravating source is eliminated. Others will eliminate particulars that have a specific deleterious effect on them. Dr. Myhill recommends eating a Stone Age diet.
Once gut problems are identified, they can be dealt with, either with short-term antibiotics, diet, antifungals, antiparasitics and the introduction of good bacteria, i.e., probiotics.
Probiotics.
In the gut ecology of the CFS patient, the bad guys are seen as winning. Whether this is the cause or an effect of the disease pathology, no one knows. However a number of doctors and researchers now believe that autoimmune diseases originate in the gut- and to defeat these diseases one has to start in the gut. Much of the cutting edge work in Autism involves diet, food allergies and gut ecology.
In this intestinal battle, bad bacteria gets the upper hand. This situation can be with or without overt symptoms. The patient must take step to reverse this situation, and move the gut ecology to a more harmonious balance. The primary tool in the battle, beyond those already mentioned, are Probiotics, Probiotics are good bacteria, found in yogurt and other foods. They also come in supplement form, and in a large variety of combinations. Consuming probiotics is seen as a direct way of balancing the good bacteria with the bad. Probiotics include lactobacillus and bifidobacterium, of different species and in different combinations.
Various probiotics are seen as being good. These include Culturelle, Klaire products, VSL#3, Mutaflor (shipped from Germany), Align, and a host of others. Recently there has been a heightened awareness of lactobacillus that create d-lactate. Excess d-lactate, along with excess H2S, is seen as a marker for increased symptoms. CFS patients are looking for probiotics that do not promote d-lactate.
Good bacteria has to both be introduced into the gut and also allowed to colonize there. Some probiotics just go right through the system. Various elements prohibit the colonization process from taking place and this has to be dealt with. Repeated stool testing can gauge efficacy of the administered probiotics. Probiotics are an amazing subject about which there is much to read. A great deal research is going on at the present time looking for association between particular probiotics and specific diseases, ranging from cancer to schizophrenia. http://qualitycounts.com/fplacto.html
Saturday, August 15, 2009
coQ10
This Patient Advocate has been reading about co-Q-10 recently. So many of these CFS topics come in and out of focus, almost on a rotational basis. There are so many shifting elements to this disease. (Recently Dr. Paul Cheney gave the impression that taking coQ10 might be counterproductive. This was after years of using it on CFS patients.)
My daughter's coQ10 levels were low in a Biolab test in November 2008. Was the coQ low because the specimen was degraded on the long flight across the Atlantic Ocean? Is this test accurate? Do the results have any relevance? Is there a treatment? There is some evidence that supplementing with coQ10 can raise the levels in the tissue of people who are deficient in coQ10. Is my patient not taking the right kind of coQ or the right amount?
This PA gets the sense that coQ10 is important for a variety of functions, particularly mitochondrial and brain function. Dr. Myhill believes that higher coQ10 blood levels are helpful to mitochondrial function.
What is a good coQ10? The PA learns in reading that there are two types of coQ - ubiquinol and ubiqinone. Each are touted as the real deal.
Information is available online. Here is a recent article with Dr. Judy:
http://www.alternativehealthjournal.com/article/ubiquinol_and_ubiquinone_what_s_the_difference_and_why_should_we_care/2740
Dr. Stephen Sinatra promotes the use of coQ10 in combination with the carnitines, d-Ribose and magnesium.
A good place to start reading is:
http://lpi.oregonstate.edu/infocenter/othernuts/coq10/
The PA reads about the various versions of coQ and lands on two that his patient will use in an effort to raise her blood levels of co-Q. The first is a capsule ubiquinone called CoQMax CF, by Xymogen, and the second is Liquid QH™
Liposomal Ubiquinol CoQ10.
Coincidentally a study just came out in July 2009 from Dr. Maes observing that coQ in low in CFS patients: MAES M.:July, 2009. Co-enzyme Q10 deficiency in myalgic encephalomyelitis
It was helpful to this Patient Advocate to read this study and this study substantiates the idea that going further down this line could be beneficial.
Now the Patient Advocate will find out about testing for coQ10.
My daughter's coQ10 levels were low in a Biolab test in November 2008. Was the coQ low because the specimen was degraded on the long flight across the Atlantic Ocean? Is this test accurate? Do the results have any relevance? Is there a treatment? There is some evidence that supplementing with coQ10 can raise the levels in the tissue of people who are deficient in coQ10. Is my patient not taking the right kind of coQ or the right amount?
This PA gets the sense that coQ10 is important for a variety of functions, particularly mitochondrial and brain function. Dr. Myhill believes that higher coQ10 blood levels are helpful to mitochondrial function.
What is a good coQ10? The PA learns in reading that there are two types of coQ - ubiquinol and ubiqinone. Each are touted as the real deal.
Information is available online. Here is a recent article with Dr. Judy:
http://www.alternativehealthjournal.com/article/ubiquinol_and_ubiquinone_what_s_the_difference_and_why_should_we_care/2740
Dr. Stephen Sinatra promotes the use of coQ10 in combination with the carnitines, d-Ribose and magnesium.
A good place to start reading is:
http://lpi.oregonstate.edu/infocenter/othernuts/coq10/
The PA reads about the various versions of coQ and lands on two that his patient will use in an effort to raise her blood levels of co-Q. The first is a capsule ubiquinone called CoQMax CF, by Xymogen, and the second is Liquid QH™
Liposomal Ubiquinol CoQ10.
Coincidentally a study just came out in July 2009 from Dr. Maes observing that coQ in low in CFS patients: MAES M.:July, 2009. Co-enzyme Q10 deficiency in myalgic encephalomyelitis
It was helpful to this Patient Advocate to read this study and this study substantiates the idea that going further down this line could be beneficial.
Now the Patient Advocate will find out about testing for coQ10.
Typical days in PA and MN
What is the average morning of a patient advocate? Well, the PA will get up and start his day like everyone else. He will have his coffee. Rather than start on his regular day, his old life’s concerns, he will launch into the newer aspect of his personality- the Patient Advocate identity. Most likely, early in the morning he will get on the internet and noodle around for a few hours. This involves reading various sites and following up on various items, almost at random. It is not possible to miss a day of doing this. Much of the important information is accumulated over time, and the ability to realize any meaning does not necessarily come from the particulars - but from the particulars as they accumulate over time and as they build. The PA might pick up an item about garlic as a killer of pathogens one morning and following this thread out into the large field of the internet might or might not reinforce or yield some information that can be registered and recorded. Often the patient advocate will spend time writing notes or writing instructions to the patient. The PA might check his list of items and seek out appointments with doctors or copy and organize test records. Or the PA might make plans for future tests or read about the tests themselves and what benefit they might or might not bring. This kind of activity will go on for several hours in the morning and come to an end half way through the PA’s day. There is no school to which you can go to learn to be a PA. There is no test to take to determine if you have the requisite qualities to be a PA. No license, state or federal, is necessary to pursue the career as a PA. Who assesses the job efficiency of a PA? Perhaps there is a state agency that overseas the work of a PA, makes sure the proper forms are filled out, the taxes are paid?. Perhaps this same agency assesses fines in the case of a PA overstepping the proscribed limits of behavior? No, no such thing exists. You might still want to know how the job of a PA is assessed. Surely there must be someone who can judge the quality of this job – surely some committee can be formed and at least a self-assessment test filled out by the PA. No, this does not happen - but you still might here a PA in a café saying, “I feel good about myself and I think that I do a good job” But is that sufficient? You decide.
And notes of one day, among many, from Minneapolis:
A day, or part of a day
For instance yesterday I got up and went to coffee and read the paper for a few minutes. I had scheduled the phlebotomist to come slightly after 2. I had to confirm with this gal that she was coming. I had to wait to do this to make sure I didn't get a call from my daughter indicating that she herself was going to cancel. When the later morning arrived I got the drift that my daughter was going to be able to do this, as she had not called me. On the phone with the phlebotomist I had to go over the test that were on the requisition sheet. There were various questions as to which blood vials to use. Some tests, like the G6PD assay need to have a lavender top, also known as a purple top, with EDTA in it, a kind of preservative. Each test takes a different kind of vial and a different amount, say 3ml or 5ml. Earlier in the day I had gone over this on the internet, looking up the various configurations so that I got them right and so the phlebotomist got them right. About this time my phone was running out of batteries as it is near broken, so I had to head for a coffee shop so I could plug in my phone and make sure I can make and receive calls. After getting things straight with the phlebotomist I drove over to Clinic 1c at F. Hospital about ten minutes away and picked up the signed requisition from Dr. T's nurse. I had written her an email last week and they said they had it at the front desk of 1C. When I got there they had trouble finding it, but, as it was so important, I was persistent and they got ahold of it and off I went. So now I had the necessary requisition in my hand, which I was too late arriving in MN on Friday to pick up and now I had things straight with the phlebotomist and it looked as if the patient was going to be able to do this blood draw. I was scheduled to meet the phlebotomist outside of my daughter's house at shortly after two, as it is important that we not schedule these blood draws to interfere with her boyfriend's naps that take place between 12:30-2. We had a number of other tests to do at the same time and these each involve reading direction, arranging again for the correct vials - some need to be partially refrigerated and others need to be spun - like that. The forms all needs to be filled out and the billing arranged correctly and the doctor’s signatures gathered, all of which or most of which I did before. This time one test kit went to NJ and I had to call the lab to make sure about details of the requisition and the mailing and the payment. This particular test is fedexed overnight so I went down to find the FedEx central shipment place in South St Paul. I was really going there to check on another shipment to UK, which is more fractious. I previously had ordered these insulated boxes, as the sample need to go at ambient temperature and can't be frozen or heated up too much. FedEx has all sorts of rules about shipments, especially overseas with medical products and you need a triple form commercial invoice as well as the regular international waybill filled out. So I wanted to go to the source and make sure that this was going to be right, since I had gone to two other FedEx stores and gotten different stories in each one, including that they could not do these shipments at all. All this was at the end of a few months emailing and work to get this particular test done in UK and as I read my email yesterday morning early I found that the nice fellow at Biolab UK had written finally that the particular test that I wanted could not be shipped to Biolab any more but had to be shipped to Acumen. So I had to go back and change my entire invoice and run back to FedEx to make copies again and since my cell phone either was out of batteries or I was unfamiliar with the overseas calling, particularly the expense, I drove in hurry back to a friend's to make a few calls to UK. I went into her place and her dog, which had eaten a whole bunch of lamb bones two days earlier had thrown up all over the place. So I was cleaning this up as I was making several fruitless calls to UK, but finally got through to someone who told me what to do, or at least I think what to do. About this time I was gaining confidence after losing confidence and things seemed to be coming together although I did notice that the Acumen lab in Devon UK does have a P.O. box number, and I knew that FedEx does not deliver to P.O. boxes. So it was back to my daughter's house where I waited outside for the phlebotomist and she arrived right on time. This phlebotomist is a really good and helpful Christian soul. I had to go over with her again about a bunch of details as one of these tests has a special UK vial that needs to be filled and other details that I needed to get her. The blood draw was done successfully and I got my particular vials and my particular boxes and forms and I was off to FedEx. The patient sent out the other test kit supposedly and the phlebotomist took her stuff to M. Hospital lab, which usually is routine. I of course had a terrific struggle back at the central FedEx place in spite of having been there earlier in the day. This time is was a different and unhelpful woman, but I finally got the forms and vials and packing and plastic bag and instruction letter and requisition form together and packed correctly and off it went. I now know this particular routine- and I have no idea if it will really get to the lab it is heading for. At this point it was 3 and I am sorry but I have leave now. Sorry. Incidentally do not take the end of this writing episode to indicate that my day as a PA was over. It continued on, that day and the following days in MN and then back in Philly and NY.
Much of the time of the PA will be taken up with routine tasks. For instance just now the PA went to a college bookstore and purchased a binder and dividers for the test results that will be sent to Dr. de Meirleir. The PA will craft a letter, long enough to get across the essentials, short enough to be readable by de Meirleir, should he chose to read it. This is not the first time that the PA has crafted such a letter. He has done it on numerous occasions. The PA is never convinced that the doctor ever looked at the introductory letter or any of the tests. However the PA is not convinced that this is a necessary part of the equation. So the PA buys the proper folder and goes on to the office to use the college Xerox machine to copy the tests that he has chosen to send on. Fortunately for the PA he has a copier which he can use free of charge. He also has a fax machine that also is free for his use. Many faxes of tests results over many years time have come through this machine. After copying the tests, the PA continues on his bike and organizes the folder, and then the PA records his views and activities on this journal. During this entire time the PA gets the sense of having done a task and having done a task pretty well. The PA has the routine down and all that it takes to implement the routine is a little time and money. This goes on every day. The PA has his tasks every day, and the list of things to do stretches out into the future.
And notes of one day, among many, from Minneapolis:
A day, or part of a day
For instance yesterday I got up and went to coffee and read the paper for a few minutes. I had scheduled the phlebotomist to come slightly after 2. I had to confirm with this gal that she was coming. I had to wait to do this to make sure I didn't get a call from my daughter indicating that she herself was going to cancel. When the later morning arrived I got the drift that my daughter was going to be able to do this, as she had not called me. On the phone with the phlebotomist I had to go over the test that were on the requisition sheet. There were various questions as to which blood vials to use. Some tests, like the G6PD assay need to have a lavender top, also known as a purple top, with EDTA in it, a kind of preservative. Each test takes a different kind of vial and a different amount, say 3ml or 5ml. Earlier in the day I had gone over this on the internet, looking up the various configurations so that I got them right and so the phlebotomist got them right. About this time my phone was running out of batteries as it is near broken, so I had to head for a coffee shop so I could plug in my phone and make sure I can make and receive calls. After getting things straight with the phlebotomist I drove over to Clinic 1c at F. Hospital about ten minutes away and picked up the signed requisition from Dr. T's nurse. I had written her an email last week and they said they had it at the front desk of 1C. When I got there they had trouble finding it, but, as it was so important, I was persistent and they got ahold of it and off I went. So now I had the necessary requisition in my hand, which I was too late arriving in MN on Friday to pick up and now I had things straight with the phlebotomist and it looked as if the patient was going to be able to do this blood draw. I was scheduled to meet the phlebotomist outside of my daughter's house at shortly after two, as it is important that we not schedule these blood draws to interfere with her boyfriend's naps that take place between 12:30-2. We had a number of other tests to do at the same time and these each involve reading direction, arranging again for the correct vials - some need to be partially refrigerated and others need to be spun - like that. The forms all needs to be filled out and the billing arranged correctly and the doctor’s signatures gathered, all of which or most of which I did before. This time one test kit went to NJ and I had to call the lab to make sure about details of the requisition and the mailing and the payment. This particular test is fedexed overnight so I went down to find the FedEx central shipment place in South St Paul. I was really going there to check on another shipment to UK, which is more fractious. I previously had ordered these insulated boxes, as the sample need to go at ambient temperature and can't be frozen or heated up too much. FedEx has all sorts of rules about shipments, especially overseas with medical products and you need a triple form commercial invoice as well as the regular international waybill filled out. So I wanted to go to the source and make sure that this was going to be right, since I had gone to two other FedEx stores and gotten different stories in each one, including that they could not do these shipments at all. All this was at the end of a few months emailing and work to get this particular test done in UK and as I read my email yesterday morning early I found that the nice fellow at Biolab UK had written finally that the particular test that I wanted could not be shipped to Biolab any more but had to be shipped to Acumen. So I had to go back and change my entire invoice and run back to FedEx to make copies again and since my cell phone either was out of batteries or I was unfamiliar with the overseas calling, particularly the expense, I drove in hurry back to a friend's to make a few calls to UK. I went into her place and her dog, which had eaten a whole bunch of lamb bones two days earlier had thrown up all over the place. So I was cleaning this up as I was making several fruitless calls to UK, but finally got through to someone who told me what to do, or at least I think what to do. About this time I was gaining confidence after losing confidence and things seemed to be coming together although I did notice that the Acumen lab in Devon UK does have a P.O. box number, and I knew that FedEx does not deliver to P.O. boxes. So it was back to my daughter's house where I waited outside for the phlebotomist and she arrived right on time. This phlebotomist is a really good and helpful Christian soul. I had to go over with her again about a bunch of details as one of these tests has a special UK vial that needs to be filled and other details that I needed to get her. The blood draw was done successfully and I got my particular vials and my particular boxes and forms and I was off to FedEx. The patient sent out the other test kit supposedly and the phlebotomist took her stuff to M. Hospital lab, which usually is routine. I of course had a terrific struggle back at the central FedEx place in spite of having been there earlier in the day. This time is was a different and unhelpful woman, but I finally got the forms and vials and packing and plastic bag and instruction letter and requisition form together and packed correctly and off it went. I now know this particular routine- and I have no idea if it will really get to the lab it is heading for. At this point it was 3 and I am sorry but I have leave now. Sorry. Incidentally do not take the end of this writing episode to indicate that my day as a PA was over. It continued on, that day and the following days in MN and then back in Philly and NY.
Much of the time of the PA will be taken up with routine tasks. For instance just now the PA went to a college bookstore and purchased a binder and dividers for the test results that will be sent to Dr. de Meirleir. The PA will craft a letter, long enough to get across the essentials, short enough to be readable by de Meirleir, should he chose to read it. This is not the first time that the PA has crafted such a letter. He has done it on numerous occasions. The PA is never convinced that the doctor ever looked at the introductory letter or any of the tests. However the PA is not convinced that this is a necessary part of the equation. So the PA buys the proper folder and goes on to the office to use the college Xerox machine to copy the tests that he has chosen to send on. Fortunately for the PA he has a copier which he can use free of charge. He also has a fax machine that also is free for his use. Many faxes of tests results over many years time have come through this machine. After copying the tests, the PA continues on his bike and organizes the folder, and then the PA records his views and activities on this journal. During this entire time the PA gets the sense of having done a task and having done a task pretty well. The PA has the routine down and all that it takes to implement the routine is a little time and money. This goes on every day. The PA has his tasks every day, and the list of things to do stretches out into the future.
Tuesday, August 11, 2009
Testing
Testing is the bread and butter of CFS investigation. While some believe that testing is useless and trial and error is the answer, this Patient Advocate believes in testing. This PA is in line with the approach of the sponsor of beatcfsandfms.com. This PA believes that the key to unraveling the disease is through extensive and repeated testing - and then a judicious trial and error. It can probe different areas and give direction, if not for now, for later.
For instance, my daughter does “regular” testing that includes CMP, CBC, thyroid panel with antibodies, iron panel with ferritin, A1C, vitamin D, and liver panel. Additionally my patient often does Coxsackie B, SED rate, CRP and EBV antibodies. A few of these tests are sent to special labs. For instance the Cox-B and EBV antibodies are sent to ARUP in Salt Lake City to do tests recommended by Dr. John Chia and Dr. A. Martin Lerner, respectively.
The following paragraphs are taken from notes made over a period of years. They include repetitions. Much of this task of being a Patient Advocate involves repetition.
Recently my patient has repeated a few key tests Redlabs (now know as VIP labs), in Reno, NV. Redlabs is an extension of Dr. De Meirleir’s operation in Belgium, and they provide a key service for CFS patients in America. They primarily test for RnaseL Elastase, Immunobilan, and metals sensitivity (HELP or Melissa). This is the only lab that provides such testing in the US.
My patient is housebound so a phlebotomist comes into her home to draw blood. The patient and the PA go carefully over the test instructions. The package is sent overnight to Redlabs. My job is to keep after the shipment. Sending overnight blood samples is not without problems.
The Patient Advocate calls Redlabs to find out if they have received the sample in a timely fashion. It is important that the blood sample arrived within 24 hours. In this case, after leaving several unanswered messages, the PA learns that the vials had arrived and that the work on them had started. The results will be faxed to the doctor in two weeks time. The PA duly notes this and phones back in two weeks. The NK cell and Immunobilan have been sent to the doctor. The RnaseL will take a few more days and it is suggested that the PA phone back on Friday. Meanwhile the PA goes after the doctor’s office and again has to deal with a machine. The PA wonders if anyone will pick up the message and certainly the PA has no confidence that they will call him back. Often calls to an office machine go unanswered. The job of the Patient Advocate is to keep after these offices to fax the test results.
The PA must be aggressive and be willing to irritate people with polite assistance. A particular lab might identify you as a PA and try to shut you down immediately. They are used to talking to the top dog. They don’t like little dogs. However there is information that they are allowed to release. The PA has to keep after them. Leaving messages is for the birds. They will not be returned. You just have to keep calling.
Once you identify that the tests are in a particular office, and once you get to talk to a real person, then you try to get them to fax the items to a particular number. Sometimes this goes smoothly, but often it does not go smoothly. Perhaps I am in NY doing another job that is parallel to the PA job: raising money to pay for this “research” and treatment. In NY I do not have a fax machine. Perhaps this is an oversight. Perhaps I should have purchased a mobile fax machine to carry around with me. Instead I have the fax sent to a corner store. I walk down and talk to them, telling them that I am expecting a fax. Often, when I drop by later, it still has not arrived. This can be for any number of reasons, as you can imagine. At other times I am in MN. Here too I do not have a fax machine. In MN I use my office away from home, the local Kinko. Sometimes the fax shows up, at other times, no. The majority of time I am in Haverford PA and I use the fax machine at the local college. Gail H. is very helpful with informing me of an incoming fax. The other gal, while polite, has slight interest. I have formed a friendship with Gail H, that allows her to help me out. Needless to say I pay the college nothing for the use of their fax machines, thinking instead that it is a professional service provided to me for my “academic research”.
Among many other things, the Patient Advocate will follow up with various labs to find out when the tests are complete. You might ask why is this necessary? I will tell you. It is necessary in order to get to the next stage: hassling the doctor’s offices for the results. If you did not follow up in an aggressive manner, you would never, ever, get the results. And let us remember that these tests are not cheap. The recent Redlabs work is going to cost around $1200, and the chances of insurance reimbursement are zero. Both private insurance companies and Medicare are allergic to paying for CFS/ME. This is not surprising as the United States Government medical wing, the CDC, cannot come to grips with CFS/ME. To them it doesn’t exist.
This test will confirm an elevation of RnaseL, as well as equivocal NK cell function. Additionally my patient did a repeat Immunobilan test to determine IgA and IgM for gut dysbiosis and leaky gut. The tests are done to get an angle on the viral end of things
Different situations require different solutions. Oftentimes the solutions are complicated and detailed and confusing. For instance the PA might want to get a certain blood test or two done on the patient. On the surface this might seem to be a simple task. However, it is far from being simple; it is a nightmare. The patient in this case is homebound. The patient’s case in itself is precarious. The lifeline to drawing blood is a phlebotomist from a local private services. At the beginning, the phlebotomist charged us $50 for a draw. Later she increased it to $80 for special times. Now it is $80 for all times. The phlebotomist used to have a fax, but that no longer works. Instead the phlebotomist has a cell phone that she answers when she feels like it. Often the PA does not hear back from the phlebotomist for a week. The appointment with the phlebotomist is apt to be canceled by either side. Perhaps the patient does not feel up to the draw; perhaps the appointment interferes with the patient’s boyfriend’s nap; perhaps the phlebotomist herself is sick or has taken a fall. Are you beginning to get the picture? Let me draw it out further for you. The PA lives in Philadelphia. The patient lives in St. Paul MN. There is one thousand miles between these two cities. It is a three-day drive, or a three-hour plane ride. Plane tickets need to be secured by the PA so that he can be present for the blood draw. In other words, the PA is not overly excited about spending five hundred dollars and spending a number of days MN in order to have the blood draw not take place. I can hear you now asking the obvious question. Why is it necessary that the PA be present at the blood draw?
That is a good question. Usually it is not necessary. Usually the phlebotomist takes the samples to M. Hospital, where they are processed. However this current set of tests is not the routine to M. Lab. This set of tests go to Quest in New Brighton, MN and needs a delivery boy. The Patient Advocate becomes the deliver boy. On a certain Monday I meet the phlebotomist outside of the patients’ apartment. It will be sunny, raining or snowing. Who knows? After the draw the PA will scurry up to Quest Diagnostics to give the samples to Nurse L. Quest is in New Brighton, twelve minutes away. The PA has scoped out the Quest location and knows how to get there (even though he is from Philadelphia), but will need to check for highway construction. The blood has to get there in 15 minutes. Nurse L. has helped me with these tests before. Nurse L. is a great helper, one of the best. I have called Nurse L. many times, just as I did over a year ago. I remember then riding my bike down near the river in St. Paul and hearing my cell phone; I stopped my bike at the side of the road and tried to pull it out in time to get the call. It was Nurse L. returning a call, and everything was working out, the blood was on its way to CA.
This was the second or third time that these labs go to Focus Labs in CA. The first time they were sent to the wrong lab in CA and that was a useless enterprise. This PA was interested in getting results from the lab used by Dr. Montoya.
Just this last week there have been a number of calls and emails going back and forth between Nurse L. and the Patient Advocate. Nurse L. wants to make sure that everything works out. Nurse L. informs me that she needs the doctor’s requisition ahead of time, and also the specific test information so that she can fill out the forms and have everything ready to get in the overnight mail to Focus Lab in CA. Nurse L, nor anyone at Quest has ever done these tests, so this is a new one for them I faxed Dr, T and Dr. G, hoping that one of them will come through. So far I heard from Dr. G and sent that along to nurse L. Nurse L is set. Dr. T has not responded. I think she is getting less and less interested in this case. Hopefully the patient will get better - so that she can get another doctor, a doctor who is a little more responsive and human. Everyone has their problems, but Dr. T is like Dr. Gaschet. She is afraid of the sight of blood. Anyway nurse L is set now. The phlebotomist can come at the proper time. The phlebotomist knows what vials are necessary and the PA know where Quest lab, so this test has a good chance of getting to Focus Lab in CA in good shape. The preparation takes time. Information is difficult to come by and the PA must nose it out. A few people might be slow on the uptake so the PA needs to be a little bit pushy. What is the alternative? I am paying over $500 for a ticket to MN - so this needs to happen.
You might want to ask what is this test? This time we are doing Focus lab test number 2340 – Chronic Fatigue Panel III. A certain amount of research as well as phone calls determines that this is the test to do. It includes EBV EA, EBV IgG, EBV IgM, HHV6 IgM, IgG, CMV IgG, IgM, Coxsackie B, Interferon Alpha and NK cell activity. We recently did NK cell through Redlabs - so this test is a backup of that. It is like you cannot get enough information on these items. Either that - or none of it is worth anything. Which is it? One year ago we did the EBV and HHV6 tests. Focus is the lab used by Dr. Montoya - and they tend to get higher titers than other labs. With these results the PA can make comparisons, and Dr. G can make decisions about going forward with antivirals. So that is one of the tests that we are doing. Are you interested in hearing about another one? This is fascinating isn’t it? One to the problems with being a PA is that the PA cannot get enough of this stuff. I am glad that you feel the same and want to hear more. Here it is:
In a previous paragraph I have spoken about the blood work that needs to be done and the arrangements that this process takes. Scheduling the phlebotomist is pretty easy. It is important to get a good phlebotomist, as this makes a big difference. I suppose now that you are asking, what is the big deal. The person just takes blood, what is so hard about that? Well I can tell you that it makes a big difference. Phlebotomy, like many things, is a special skill. The phlebotomist needs to be able to establish a bond of trust with the patient and reassure that patient that all is going to be well. For instance we already know that taking blood out of a patient is a stressor. In this disease almost anything is a stressor. The fact that this phlebotomist has established the trust of the patient and draws blood very easily and well is worth its weight in gold. We have a terrific phlebotomist, the strongest link in the chain.
Also the PA must press on with testing and various programs. It is the nature of the disease that not many options are viable. Very few therapies bring results, and often they are not noticeable. Very few tests shed much light on the situation, although it is possible to get a slight angle on one particular aspect or another. The bottom line though is an expensive form of disappointment.
At other times, the PA must force the situation to do tests that in their very nature can bring upset with the results. Take for instance the Translocator Protein test from Acumen labs in the UK. This test on my patient yields very depressing and discouraging results. It indicates, to the degree that it can be believed, that the functioning of the mitochondria is very poor. Certainly the condition of the patient is reflected in this test. What the exact cause is or the exact treatment is, no one knows. What is clear is that something is remedially messed up. Certain parts of this negative result are more curable than others and can be measured again.
Recently we have undertaken to repeat this test. The hope is that various parameters have improved with treatment. The symptoms of the patient meanwhile have been on a slight upward tick. As with other tests, perhaps an improvement can be sensed. On the other hand, there is no guarantee of improvement in any parameter, and the picture also might be drawn the same or worse. In a way, it seems preferable to not repeat this test and just hope for the best. However, believing that the truth holds hope, the PA forces the situation, spends the additional $1000 plus $250 expedited FedEx shipment in order to get more information -in hopes of being able to draw a more perfect picture. Certainly one would want proof that basic parameters are better - SOD, CoQ, magnesium, B12 and thyroid. Spinning off these improvements along with other therapies, one would hope that time itself would aid in the healing. So the Patient Advocate has anxieties here, about doing these tests and about fielding the results. Doing these tests disturbs the life and sleep of the PA. Just the filling out of the forms and the drawing and shipment is a big problem. Imagine finally getting the report back, and trying to sift through the results. It certainly is possible to discount the entire enterprise and hope for the best, in spite of the results.
But what about doing this test, this set of mitochondrial tests in the UK. How does it happen? How can you get blood samples from here to the UK and have legible work done on them? As usual arranging for this test takes a great deal of research, as well as a great deal of communication with folks in the UK. My patient was one of the very first USA persons to do this test in the UK. My patient has a very hip PA.
The Patient Advocate will read the results of this first test, almost two years ago now. The results made for disturbed reading not only because they were difficult to understand (the idea of the mitochondria itself is incomprehensible to the PA), but also for the problems that they announced. Two years later, the PA still reads through the detailed analysis trying to make heads or tails of this essentially very bad news. And this is only the first test. The second test was done almost a year later, and was more specific and stranger in its negativity. The upshot is that the PA wonders how much damage has been done here and is any of it correctable? The PA understands that this test goes into one disturbing area of CFS, but perhaps not an essential one. The subject is disputed. Other CFS doctors emphasize other tests. Only a small fraction of CFS patients get this mitochondrial test done. The real implication of the test is unknown. However, with this in mind, the PA is looking for two things in repeating this test. The first is confirmation of the initial results. The PA knows that tests are tests and they do need to be substantiated. The second thing that the PA is looking for is improvement in a few areas, indicating that these therapies are making inroads into the pathology of the disease. On the one hand, the PA does not want to look, or the other, the PA does want to look – dismissal, fear and hope sit side by side on this one.
Most of the other test items of CFS are vague and offer the hope or possibility of getting around something. This mitochondrial test is frightening in its specificity, and in the possibility of no change or a worsening of the test results or a broadening, without any significant dent being place on the pathological entity. Still the emphasis has to be placed on the possibility that sections and subsections can be identified and dealt with.
The PA must arrange for test kits to be sent to the patient. These might be from Vitamin Diagnostics, Diagnos-techs, Viracor, Metametrix, Genovas, LabCorp, Acumen, Biolab, Redlabs Belgium or other labs. The PA must arrange for requisitions from doctor’s for tests. The PA must chase down test results. The patient can do various tests directly. Often they are recorded online. Often the situation does not work very well and the PA must make an effort to try to retrieve the test results. At times this process can take days or weeks.
The PA has to keep all variables in mind. The PA must pour over test results and think about the implications. For instance just today the PA has been examining a test result from about a month ago. The PA looked at this test result when it came in, copied the sheets and sent them to the various doctors. At times the PA might be able to get an interpretation of them, but more often the PA is on his own, and he must nose out by himself what these tests mean. Often it is clear-cut. It is obvious when a selective IgA deficiency shows up, particularly when it is not the first time. Viral titers are another thing. The quest for a viral involvement goes on and on, with contradictory interpretations. Things come and go like in an inkblot drawing. Everything is shifting, nothing is clear. For instance take the instance of Coxsackie B. What to do with this? Does my patient have coxsackie b involvement or not. Does my patient have lyme disease involvement or not? It is difficult to tell.
Recently the patient has had a series of blood tests done. These tests are both routine and specialized. The routine tests go off to various places including ARUP labs in Salt Lake City, Utah where EBV and Coxsackie B panels are done. The EBV panel is a special kit by The PA writes up the request for the physician and faxes it to her office. In time the signed requisition ends up at the patient’s home. The patient arranges for the phlebotomist and the blood is drawn. Off it goes to various labs. In time the PA will have to go after these results. Otherwise the PA will never see them. They will just disappear into a drawer. For instance it has now been two weeks since the blood has been drawn, and there is no sign of the routine part of these tests. This part of the tests takes a few days to process. Sometimes the results are mailed to the patient’s home. At other times they have to be extracted from the physician’s office. This is the way that it is done in MN.
The other set of tests are sent to Redlabs (now VIP labs) in Reno and are reported back to a different physician. The same problem presents itself. How does one get ahold of the results? Getting the tests done themselves also takes effort. Part of the problem is that it is the Patient Advocate’s idea to have these specialized tests done. Therefore it falls upon him to get the test kits, then to have the doctor sign and fax the requisition and to make sure that the blood gets to the lab in a timely fashion - and that the lab is clear on the correct tests to be done. This all takes a great deal of time and many different phone calls, as both offices, the doctor’s office and the lab office, are partially dysfunctional. Then there is the problem of having to retrieve the results from the doctor’s office. And then there is the problem of determining what, if anything, the test results might mean.
Certain things have changed since the last Translocator Protein test of one year ago. In the first place the patient is now taking a regular dose of thyroid. A year ago this was not true. In January or February 2008 my patient got on 120 mg of Armour. In the more recent Translocator Protein test we would look for an elevation of the low levels of cristae. Low levels of cristae are associated with poor thyroid function. That could be one positive step. We have another test that indicates a higher ATP over the last year. Perhaps this test also would show betterment in ATP production? What we can make of the DNA fluorescence binding, who knows or God knows? We might look for decrease in calcium at the outer Mito membrane. At the same time as beginning Armour, my patient started the methylation protocol. Already it has shown some benefit and will continue to do so. It might help regulate this high calcium. The increase in glutathione, indicated in the Vitamin Diagnostics test, also might be helpful in getting some of these substances off the Translocator Protein function. My patient now uses nickel free cookware, so maybe the nickel will come down, and also she is doing the FIR sauna. My patient also takes a detox cocktail and the methylation protocol and Yasko protocol is seen as a detox element. We will see also whether the potassium or zinc will get better also. Getting rid of the nickel will be important. So we shall see.
It turns out that the more recent test for mitochondrial function has improved. Indeed the cristae have improved, the nickel and pbbs are gone, the ATP is functioning better and other parameters are improved. The use of the FIR sauna, the avoidance of stainless steel, the Myhill energetics, the methylation supplements, all seem to have helped to bring improvement. The question is, when will the fatigue lift?
We live in a quite amazing age, one where many sophisticated tests can be done out of the home. These do not include important tests like Echo tests, or SPECT scans, or sleep studies. It is important to do these items is the patient can get to a hospital. Once the patient becomes too sick to go out, this avenue is cut off. It is an important argument to press forward when the patient is half sick and get what information is possible. It is not a great idea to sit around and wait. This disease can get worse, and often does, in spite of rumors that it does not worsen, or is not a progressive disease. Those patients who do not give this disease its proper respect will pay the consequences. You must do things when you can. If you do not do this, the patient paints themselves in a corner.
My patient also regular does tests that measure gut ecology. These can be done through Metametrix’ GI Effects test or Genova’s CDSA or Redlabs Belgium’s microbial stool analysis. Various pathogens, parasites, candida and a host of other items can be done. These can be very important tests as can saliva tests from Diagnostechs measuring cortisol or blood tests from Vitamin Diagnostics measuring methylation, ATP and NADPH. Primary home tests can be done with organic acids and amino acids from various labs. These tests provide important information on various urinary metabolites both for diagnostic work and for tracking.
An amazing little test is the Immuknow test from Viracor which measures ATP, and is used mostly for transplant patients, to monitor treatment. Dr. Ablashi told me about this test, which is used by a few CFS patients.
There are other important tests, and you can nose them out.
The Patient Advocate and the patient have an array of home tests from which to draw. Collectively these tests provide valuable information that circles around the edges of this illness, the center of which remains unknown. In approaching this kind of testing do not expect much help from either Medicare or private insurance. Occasionally they will make a mistake and give a reimbursement, but I don’t count on it. Instead I put my mind to where I can get money to pay for these tests.
For instance, my daughter does “regular” testing that includes CMP, CBC, thyroid panel with antibodies, iron panel with ferritin, A1C, vitamin D, and liver panel. Additionally my patient often does Coxsackie B, SED rate, CRP and EBV antibodies. A few of these tests are sent to special labs. For instance the Cox-B and EBV antibodies are sent to ARUP in Salt Lake City to do tests recommended by Dr. John Chia and Dr. A. Martin Lerner, respectively.
The following paragraphs are taken from notes made over a period of years. They include repetitions. Much of this task of being a Patient Advocate involves repetition.
Recently my patient has repeated a few key tests Redlabs (now know as VIP labs), in Reno, NV. Redlabs is an extension of Dr. De Meirleir’s operation in Belgium, and they provide a key service for CFS patients in America. They primarily test for RnaseL Elastase, Immunobilan, and metals sensitivity (HELP or Melissa). This is the only lab that provides such testing in the US.
My patient is housebound so a phlebotomist comes into her home to draw blood. The patient and the PA go carefully over the test instructions. The package is sent overnight to Redlabs. My job is to keep after the shipment. Sending overnight blood samples is not without problems.
The Patient Advocate calls Redlabs to find out if they have received the sample in a timely fashion. It is important that the blood sample arrived within 24 hours. In this case, after leaving several unanswered messages, the PA learns that the vials had arrived and that the work on them had started. The results will be faxed to the doctor in two weeks time. The PA duly notes this and phones back in two weeks. The NK cell and Immunobilan have been sent to the doctor. The RnaseL will take a few more days and it is suggested that the PA phone back on Friday. Meanwhile the PA goes after the doctor’s office and again has to deal with a machine. The PA wonders if anyone will pick up the message and certainly the PA has no confidence that they will call him back. Often calls to an office machine go unanswered. The job of the Patient Advocate is to keep after these offices to fax the test results.
The PA must be aggressive and be willing to irritate people with polite assistance. A particular lab might identify you as a PA and try to shut you down immediately. They are used to talking to the top dog. They don’t like little dogs. However there is information that they are allowed to release. The PA has to keep after them. Leaving messages is for the birds. They will not be returned. You just have to keep calling.
Once you identify that the tests are in a particular office, and once you get to talk to a real person, then you try to get them to fax the items to a particular number. Sometimes this goes smoothly, but often it does not go smoothly. Perhaps I am in NY doing another job that is parallel to the PA job: raising money to pay for this “research” and treatment. In NY I do not have a fax machine. Perhaps this is an oversight. Perhaps I should have purchased a mobile fax machine to carry around with me. Instead I have the fax sent to a corner store. I walk down and talk to them, telling them that I am expecting a fax. Often, when I drop by later, it still has not arrived. This can be for any number of reasons, as you can imagine. At other times I am in MN. Here too I do not have a fax machine. In MN I use my office away from home, the local Kinko. Sometimes the fax shows up, at other times, no. The majority of time I am in Haverford PA and I use the fax machine at the local college. Gail H. is very helpful with informing me of an incoming fax. The other gal, while polite, has slight interest. I have formed a friendship with Gail H, that allows her to help me out. Needless to say I pay the college nothing for the use of their fax machines, thinking instead that it is a professional service provided to me for my “academic research”.
Among many other things, the Patient Advocate will follow up with various labs to find out when the tests are complete. You might ask why is this necessary? I will tell you. It is necessary in order to get to the next stage: hassling the doctor’s offices for the results. If you did not follow up in an aggressive manner, you would never, ever, get the results. And let us remember that these tests are not cheap. The recent Redlabs work is going to cost around $1200, and the chances of insurance reimbursement are zero. Both private insurance companies and Medicare are allergic to paying for CFS/ME. This is not surprising as the United States Government medical wing, the CDC, cannot come to grips with CFS/ME. To them it doesn’t exist.
This test will confirm an elevation of RnaseL, as well as equivocal NK cell function. Additionally my patient did a repeat Immunobilan test to determine IgA and IgM for gut dysbiosis and leaky gut. The tests are done to get an angle on the viral end of things
Different situations require different solutions. Oftentimes the solutions are complicated and detailed and confusing. For instance the PA might want to get a certain blood test or two done on the patient. On the surface this might seem to be a simple task. However, it is far from being simple; it is a nightmare. The patient in this case is homebound. The patient’s case in itself is precarious. The lifeline to drawing blood is a phlebotomist from a local private services. At the beginning, the phlebotomist charged us $50 for a draw. Later she increased it to $80 for special times. Now it is $80 for all times. The phlebotomist used to have a fax, but that no longer works. Instead the phlebotomist has a cell phone that she answers when she feels like it. Often the PA does not hear back from the phlebotomist for a week. The appointment with the phlebotomist is apt to be canceled by either side. Perhaps the patient does not feel up to the draw; perhaps the appointment interferes with the patient’s boyfriend’s nap; perhaps the phlebotomist herself is sick or has taken a fall. Are you beginning to get the picture? Let me draw it out further for you. The PA lives in Philadelphia. The patient lives in St. Paul MN. There is one thousand miles between these two cities. It is a three-day drive, or a three-hour plane ride. Plane tickets need to be secured by the PA so that he can be present for the blood draw. In other words, the PA is not overly excited about spending five hundred dollars and spending a number of days MN in order to have the blood draw not take place. I can hear you now asking the obvious question. Why is it necessary that the PA be present at the blood draw?
That is a good question. Usually it is not necessary. Usually the phlebotomist takes the samples to M. Hospital, where they are processed. However this current set of tests is not the routine to M. Lab. This set of tests go to Quest in New Brighton, MN and needs a delivery boy. The Patient Advocate becomes the deliver boy. On a certain Monday I meet the phlebotomist outside of the patients’ apartment. It will be sunny, raining or snowing. Who knows? After the draw the PA will scurry up to Quest Diagnostics to give the samples to Nurse L. Quest is in New Brighton, twelve minutes away. The PA has scoped out the Quest location and knows how to get there (even though he is from Philadelphia), but will need to check for highway construction. The blood has to get there in 15 minutes. Nurse L. has helped me with these tests before. Nurse L. is a great helper, one of the best. I have called Nurse L. many times, just as I did over a year ago. I remember then riding my bike down near the river in St. Paul and hearing my cell phone; I stopped my bike at the side of the road and tried to pull it out in time to get the call. It was Nurse L. returning a call, and everything was working out, the blood was on its way to CA.
This was the second or third time that these labs go to Focus Labs in CA. The first time they were sent to the wrong lab in CA and that was a useless enterprise. This PA was interested in getting results from the lab used by Dr. Montoya.
Just this last week there have been a number of calls and emails going back and forth between Nurse L. and the Patient Advocate. Nurse L. wants to make sure that everything works out. Nurse L. informs me that she needs the doctor’s requisition ahead of time, and also the specific test information so that she can fill out the forms and have everything ready to get in the overnight mail to Focus Lab in CA. Nurse L, nor anyone at Quest has ever done these tests, so this is a new one for them I faxed Dr, T and Dr. G, hoping that one of them will come through. So far I heard from Dr. G and sent that along to nurse L. Nurse L is set. Dr. T has not responded. I think she is getting less and less interested in this case. Hopefully the patient will get better - so that she can get another doctor, a doctor who is a little more responsive and human. Everyone has their problems, but Dr. T is like Dr. Gaschet. She is afraid of the sight of blood. Anyway nurse L is set now. The phlebotomist can come at the proper time. The phlebotomist knows what vials are necessary and the PA know where Quest lab, so this test has a good chance of getting to Focus Lab in CA in good shape. The preparation takes time. Information is difficult to come by and the PA must nose it out. A few people might be slow on the uptake so the PA needs to be a little bit pushy. What is the alternative? I am paying over $500 for a ticket to MN - so this needs to happen.
You might want to ask what is this test? This time we are doing Focus lab test number 2340 – Chronic Fatigue Panel III. A certain amount of research as well as phone calls determines that this is the test to do. It includes EBV EA, EBV IgG, EBV IgM, HHV6 IgM, IgG, CMV IgG, IgM, Coxsackie B, Interferon Alpha and NK cell activity. We recently did NK cell through Redlabs - so this test is a backup of that. It is like you cannot get enough information on these items. Either that - or none of it is worth anything. Which is it? One year ago we did the EBV and HHV6 tests. Focus is the lab used by Dr. Montoya - and they tend to get higher titers than other labs. With these results the PA can make comparisons, and Dr. G can make decisions about going forward with antivirals. So that is one of the tests that we are doing. Are you interested in hearing about another one? This is fascinating isn’t it? One to the problems with being a PA is that the PA cannot get enough of this stuff. I am glad that you feel the same and want to hear more. Here it is:
In a previous paragraph I have spoken about the blood work that needs to be done and the arrangements that this process takes. Scheduling the phlebotomist is pretty easy. It is important to get a good phlebotomist, as this makes a big difference. I suppose now that you are asking, what is the big deal. The person just takes blood, what is so hard about that? Well I can tell you that it makes a big difference. Phlebotomy, like many things, is a special skill. The phlebotomist needs to be able to establish a bond of trust with the patient and reassure that patient that all is going to be well. For instance we already know that taking blood out of a patient is a stressor. In this disease almost anything is a stressor. The fact that this phlebotomist has established the trust of the patient and draws blood very easily and well is worth its weight in gold. We have a terrific phlebotomist, the strongest link in the chain.
Also the PA must press on with testing and various programs. It is the nature of the disease that not many options are viable. Very few therapies bring results, and often they are not noticeable. Very few tests shed much light on the situation, although it is possible to get a slight angle on one particular aspect or another. The bottom line though is an expensive form of disappointment.
At other times, the PA must force the situation to do tests that in their very nature can bring upset with the results. Take for instance the Translocator Protein test from Acumen labs in the UK. This test on my patient yields very depressing and discouraging results. It indicates, to the degree that it can be believed, that the functioning of the mitochondria is very poor. Certainly the condition of the patient is reflected in this test. What the exact cause is or the exact treatment is, no one knows. What is clear is that something is remedially messed up. Certain parts of this negative result are more curable than others and can be measured again.
Recently we have undertaken to repeat this test. The hope is that various parameters have improved with treatment. The symptoms of the patient meanwhile have been on a slight upward tick. As with other tests, perhaps an improvement can be sensed. On the other hand, there is no guarantee of improvement in any parameter, and the picture also might be drawn the same or worse. In a way, it seems preferable to not repeat this test and just hope for the best. However, believing that the truth holds hope, the PA forces the situation, spends the additional $1000 plus $250 expedited FedEx shipment in order to get more information -in hopes of being able to draw a more perfect picture. Certainly one would want proof that basic parameters are better - SOD, CoQ, magnesium, B12 and thyroid. Spinning off these improvements along with other therapies, one would hope that time itself would aid in the healing. So the Patient Advocate has anxieties here, about doing these tests and about fielding the results. Doing these tests disturbs the life and sleep of the PA. Just the filling out of the forms and the drawing and shipment is a big problem. Imagine finally getting the report back, and trying to sift through the results. It certainly is possible to discount the entire enterprise and hope for the best, in spite of the results.
But what about doing this test, this set of mitochondrial tests in the UK. How does it happen? How can you get blood samples from here to the UK and have legible work done on them? As usual arranging for this test takes a great deal of research, as well as a great deal of communication with folks in the UK. My patient was one of the very first USA persons to do this test in the UK. My patient has a very hip PA.
The Patient Advocate will read the results of this first test, almost two years ago now. The results made for disturbed reading not only because they were difficult to understand (the idea of the mitochondria itself is incomprehensible to the PA), but also for the problems that they announced. Two years later, the PA still reads through the detailed analysis trying to make heads or tails of this essentially very bad news. And this is only the first test. The second test was done almost a year later, and was more specific and stranger in its negativity. The upshot is that the PA wonders how much damage has been done here and is any of it correctable? The PA understands that this test goes into one disturbing area of CFS, but perhaps not an essential one. The subject is disputed. Other CFS doctors emphasize other tests. Only a small fraction of CFS patients get this mitochondrial test done. The real implication of the test is unknown. However, with this in mind, the PA is looking for two things in repeating this test. The first is confirmation of the initial results. The PA knows that tests are tests and they do need to be substantiated. The second thing that the PA is looking for is improvement in a few areas, indicating that these therapies are making inroads into the pathology of the disease. On the one hand, the PA does not want to look, or the other, the PA does want to look – dismissal, fear and hope sit side by side on this one.
Most of the other test items of CFS are vague and offer the hope or possibility of getting around something. This mitochondrial test is frightening in its specificity, and in the possibility of no change or a worsening of the test results or a broadening, without any significant dent being place on the pathological entity. Still the emphasis has to be placed on the possibility that sections and subsections can be identified and dealt with.
The PA must arrange for test kits to be sent to the patient. These might be from Vitamin Diagnostics, Diagnos-techs, Viracor, Metametrix, Genovas, LabCorp, Acumen, Biolab, Redlabs Belgium or other labs. The PA must arrange for requisitions from doctor’s for tests. The PA must chase down test results. The patient can do various tests directly. Often they are recorded online. Often the situation does not work very well and the PA must make an effort to try to retrieve the test results. At times this process can take days or weeks.
The PA has to keep all variables in mind. The PA must pour over test results and think about the implications. For instance just today the PA has been examining a test result from about a month ago. The PA looked at this test result when it came in, copied the sheets and sent them to the various doctors. At times the PA might be able to get an interpretation of them, but more often the PA is on his own, and he must nose out by himself what these tests mean. Often it is clear-cut. It is obvious when a selective IgA deficiency shows up, particularly when it is not the first time. Viral titers are another thing. The quest for a viral involvement goes on and on, with contradictory interpretations. Things come and go like in an inkblot drawing. Everything is shifting, nothing is clear. For instance take the instance of Coxsackie B. What to do with this? Does my patient have coxsackie b involvement or not. Does my patient have lyme disease involvement or not? It is difficult to tell.
Recently the patient has had a series of blood tests done. These tests are both routine and specialized. The routine tests go off to various places including ARUP labs in Salt Lake City, Utah where EBV and Coxsackie B panels are done. The EBV panel is a special kit by The PA writes up the request for the physician and faxes it to her office. In time the signed requisition ends up at the patient’s home. The patient arranges for the phlebotomist and the blood is drawn. Off it goes to various labs. In time the PA will have to go after these results. Otherwise the PA will never see them. They will just disappear into a drawer. For instance it has now been two weeks since the blood has been drawn, and there is no sign of the routine part of these tests. This part of the tests takes a few days to process. Sometimes the results are mailed to the patient’s home. At other times they have to be extracted from the physician’s office. This is the way that it is done in MN.
The other set of tests are sent to Redlabs (now VIP labs) in Reno and are reported back to a different physician. The same problem presents itself. How does one get ahold of the results? Getting the tests done themselves also takes effort. Part of the problem is that it is the Patient Advocate’s idea to have these specialized tests done. Therefore it falls upon him to get the test kits, then to have the doctor sign and fax the requisition and to make sure that the blood gets to the lab in a timely fashion - and that the lab is clear on the correct tests to be done. This all takes a great deal of time and many different phone calls, as both offices, the doctor’s office and the lab office, are partially dysfunctional. Then there is the problem of having to retrieve the results from the doctor’s office. And then there is the problem of determining what, if anything, the test results might mean.
Certain things have changed since the last Translocator Protein test of one year ago. In the first place the patient is now taking a regular dose of thyroid. A year ago this was not true. In January or February 2008 my patient got on 120 mg of Armour. In the more recent Translocator Protein test we would look for an elevation of the low levels of cristae. Low levels of cristae are associated with poor thyroid function. That could be one positive step. We have another test that indicates a higher ATP over the last year. Perhaps this test also would show betterment in ATP production? What we can make of the DNA fluorescence binding, who knows or God knows? We might look for decrease in calcium at the outer Mito membrane. At the same time as beginning Armour, my patient started the methylation protocol. Already it has shown some benefit and will continue to do so. It might help regulate this high calcium. The increase in glutathione, indicated in the Vitamin Diagnostics test, also might be helpful in getting some of these substances off the Translocator Protein function. My patient now uses nickel free cookware, so maybe the nickel will come down, and also she is doing the FIR sauna. My patient also takes a detox cocktail and the methylation protocol and Yasko protocol is seen as a detox element. We will see also whether the potassium or zinc will get better also. Getting rid of the nickel will be important. So we shall see.
It turns out that the more recent test for mitochondrial function has improved. Indeed the cristae have improved, the nickel and pbbs are gone, the ATP is functioning better and other parameters are improved. The use of the FIR sauna, the avoidance of stainless steel, the Myhill energetics, the methylation supplements, all seem to have helped to bring improvement. The question is, when will the fatigue lift?
We live in a quite amazing age, one where many sophisticated tests can be done out of the home. These do not include important tests like Echo tests, or SPECT scans, or sleep studies. It is important to do these items is the patient can get to a hospital. Once the patient becomes too sick to go out, this avenue is cut off. It is an important argument to press forward when the patient is half sick and get what information is possible. It is not a great idea to sit around and wait. This disease can get worse, and often does, in spite of rumors that it does not worsen, or is not a progressive disease. Those patients who do not give this disease its proper respect will pay the consequences. You must do things when you can. If you do not do this, the patient paints themselves in a corner.
My patient also regular does tests that measure gut ecology. These can be done through Metametrix’ GI Effects test or Genova’s CDSA or Redlabs Belgium’s microbial stool analysis. Various pathogens, parasites, candida and a host of other items can be done. These can be very important tests as can saliva tests from Diagnostechs measuring cortisol or blood tests from Vitamin Diagnostics measuring methylation, ATP and NADPH. Primary home tests can be done with organic acids and amino acids from various labs. These tests provide important information on various urinary metabolites both for diagnostic work and for tracking.
An amazing little test is the Immuknow test from Viracor which measures ATP, and is used mostly for transplant patients, to monitor treatment. Dr. Ablashi told me about this test, which is used by a few CFS patients.
There are other important tests, and you can nose them out.
The Patient Advocate and the patient have an array of home tests from which to draw. Collectively these tests provide valuable information that circles around the edges of this illness, the center of which remains unknown. In approaching this kind of testing do not expect much help from either Medicare or private insurance. Occasionally they will make a mistake and give a reimbursement, but I don’t count on it. Instead I put my mind to where I can get money to pay for these tests.
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