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."

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.

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

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.

Thursday, October 1, 2009


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 – and

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.