Focus on Dr. John Chia, Researcher

The Patient Advocate wants to write about Dr. John Chia. Dr. Chia is an infectious disease specialist who worked on EBV for many years. He got involved in CFS/ME by happenstance. His son Andrew came down with an unknown illness just as Dr. Chia was becoming interested in enteroviruses. Dr. Chia connected the dots, solved his son's illness, and reforged a connection between CFS/ME and enteroviruses.

The Patient Advocate first saw Dr. Chia in Fort Lauderdale in 2007. Subsequently the PA has seen Dr. Chia give lectures at the Invest in ME conferences in London in May of 2008 and 2009 and also in Baltimore at the HHV6 conference in June 2008. The first two lectures can be purchased on DVDs from the Invest in ME group and the Baltimore lecture in on the internet here.

Dr. Chia will give another presentation in London in May 2010.

Dr. Chia believes that enteroviruses are involved in CFS/ME. He takes stomach biopsies from his patients and controls and stains them to identify enteroviruses. These viruses included Coxsackie B (1-6) and 32 different Echoviruses. Dr. Chia finds enteroviral involvement in 82% of his CFS patients and 20% of his controls. The study can be read here.

Dr Chia does not claim originality in this study. Instead he builds on a forgoteen but establish legacy of research in the UK, particularly of John Richardson (d.2003.) Coxsackie and other enterovirus were on the front lines of CFS/ME research until they faded from the picture for a variety of reasons. Such are the ways of science, especially in CFS/ME research. Dr. Chia, with his research, has brought enterovirus back into to picture.

Dr. Chia ultimately identified enteroviral presence through stomach biopsies, which proved that these viruses continue to live in the gut ecology. This flies into the face of the idea that enteroviruses are hit and run viruses.

Dr. Chia discovered an antibody test for Coxsackie and Echoviruses that is more specific than other labs. By serendipity, a sample from Dr. Chia’s office ended up in ARUP lab in Salt Lake City - and the results came back quite positive. Upon investigation, Dr. Chia discovered that this ARUP lab does a test that is more specific than other labs. This ARUP test reports antibody levels of Coxsackie B 1-6 and 5 of the 32 Echoviruses. An elevation of 1:320 (1:32) is considered to be significant., especially for b4. The number of the ARUP tests are:

0060055 Coxsackie antibodies by neutralization
0060053 echo virus antibodies by neutralization

If a patient is unable to get a stomach biopsy, the key is to get an antibodies test at ARUP.

My patient did tests at Focus labs and ARUP at the same time. Here are the results:

October 2009, at Focus Diagnostics
b1 1:16
b2 <1:8
b3 1:16
b4 1:16
b5 1:8
b6 1:8

October 2009, at ARUP labs
b1 <1:10
b2 1:320
b3 1:80
b4 >1:640
b5 1:10
b6 <1:10

Dr. Chia would consider the elevated Coxsackie b2 and b4 from the ARUP lab to be significant. The significance of this is heightened by the fact that the b4 is sustained at 1:640 in seven tests over a four year period.

Is there enteroviral involvement here and what is the treatment?

So far, Dr. Chia has been able to prove the existence of enteroviruses in the gut of his patients. This is a surprise to the CFS/ME community as most people had no clue about this. It took Dr. Chia’s individual thinking and persistence to look in this direction. Dr. Chia is aided in his research by his son and his wife. He introduces his lecture by saying that instead of going out to dinner, he, his wife and his son go to the lab. Dr. Chia speculates that if enteroviruses are in the gut, then they could be in the heart, the thyroid, the pancreas, and the brain. Proving the existence of enterovirus in tissue is a big deal - but it does not establish that it is the cause of the CFS/ME. Further research will perhaps elucidate the involvement.

In the meantime, Dr. Chia assumes that enteroviruses are a cause of CFS/ME in a large proportion of his cases. At the moment the treatments for enteroviruses are limited. Initially Dr .Chia gave a number of patients interferon, but he has stopped doing that because of toxicity problems and relapses after treatment. In the past few years, having stopped interferon treatments, Dr. Chia is using various Chinese medicines. He first used Matrine, which was literally difficult for patients to stomach. More recently he has been giving his patients Oxymatrine. Dr. Chia says that 53% of patients show betterment on Oxymatrine and a slightly higher percentage if they have Coxsackie B2 and B4. He recommends that Oxymatrine be started slowly and titrated up to a dosage level of 4-6 tablets a day. The patient can determine whether the Oxymatrine is effective with three months of treatment. The treatment is stopped if it does not bring betterment in this time period.

Dr. Chia imported the oxymatrine from China but worried about impurities. in the last few months he is making his own in the USA, a formula made conforming to FDA regulations and considered to be safe. There are some suspicious souls who feel that Dr. Chia has invented all this enteroviral CFS in order to sell his own supplements and this, of course, is a fantastic joke. Dr. Chia is one serious scientist and doctor, who strives mightily to bring clarity to a subsection of CFS/ME. It is anyone’s guess how large this subset really is. Cort Johnson’s linchpin site has more information on Oxymartrine here. The HHV6 Foundation has a patient forum with some discussion of Oxymatrine use.

Cort Johnson’s excellent site has two in depth interviews with Dr. Chia here and here.

The strangest aspect to this situation is that Dr. Chia makes uncertain headway in this world of CFS/ME. Somehow in this vague and confusing world of diagnosis and treatment of CFS/ME his ideas are a little to specific and scientifically proven. The world of CFS prefers to clamor towards unproven claims of the magic bullet – XMRV* for instance – putting aside serious research that stares at us right in the face. For instance, Dr. Chia applied for funding from a recognized CFS/ME organization to study the effect of Oxymatrine on CFS/ME patients, but was denied funding.

A noticeable exception to a general level of indifference towards Dr. Chia is his reception in the UK, where he has been invited to give lectures for three years running. It will be worthwhile keeping an eye on his research as Dr. Chia is really onto something and does not seem to want to be interrupted in his headlong effort to solve part of this illness. The unfortunate part of this situation is that with the clear indentfication of a potential cause of CFS/ME no funding is available to develop anti-enterovial drugs. Dr. Chia says it will be ten years before such drugs will be forthcoming. This is a long time to wait.

Dr.Chia is on the board of the Enterovirus Foundation which can be found here.

*This is not to say that XMRV research is not important. It obviously is tremendously important and bears following very closely. However since October 9th, the CFS/ME community has gone haywire over the possibilities of diagnosis and treatment for XMRV. It is ironic, in this environment, that doctors and researchers are not paying more attention to the longstanding enteroviral involvement with CFS/ME. It might be worthwhile to take a step backwards and look once again at the possibility that enterovirus are heavily involved in CFS/ME, with or without XMRV.

Gut treatment using the Metametrix GI Effects test

Many doctors, including Peterson, Cheney, Guyer, Myhill and de Meirleir advocate working on the gut and trying to get it into balance. This is not an easy enterprise. De Meirleir says that it takes months to redress the grievances of a dysfunctional gut. This is a slow rebuilding process and it takes time.

Dietary changes have been seen as essential to bringing the gut into line, particularly changes that involve avoidance or elimination. Many items need to be restricted or given up, depending on the specifics of the patient. Often this will involve cutting out white flour, sugar, caffeine, soy, dairy, wheat, tobacco, and alcohol. Adding fresh organic vegetables, low carbohydrates and lean meats along with bottled water is seen as a step in the right direction Many people do not want to constrict themselves in this way and make these substitutions, as they are already giving up so much with this disease. It takes a special type of patient to do this - especially as the results are not immediately or readily apparent.

One of the chief weapons in trying to control and alter the gut is the diagnostic stool analysis (CDSA). In the US, stool tests are done by Metametrix, Genovas, and Diagnostechs. In Europe the chief test is the fecal microbial analysis at RedLabs BE. Each of these tests have their particular advantages, which the reader can explore. Dr. Guyer uses the Metametrix. Dr. Vrchota uses Genovas. Rich van Konynenburg recommends the Diagnostechs. My patient has been using the Metametrix test for the past three years.

The first set of items - Predominant Bacteria (Obligate anaerobes and Facultative anaerobes) – are an important set of markers of the health of the immune system. “They provide colonization resistance against potentially pathogenic organisms, aid in digestion and absorption, produce vitamins and SCFA’s and stimulate the GI immune system.” Dr. Guyer says that these items should be on the right of the graph. If the little dots are to the left, this indicates that the item is low, and that it needs to be raised. Unfortunately, there is nothing that can be directly done to elevate these items or to bring them into a more normal range.

Bacteroides sp. along with Bifidobacteria sp. should be highest. The information about Clostridia sp., Prevotella sp. and Mycoplasma sp. is confusing, to say the least. Prevotella is one of the three bad boys that shows up on de Meirleir’s list, along with Enterococcus and Streptococcus. Prevotella can be lowered by taking oxbile or Creon (suggested by de Meirleir). Oxbile can be supplemented by itself, or as part of a pancreatic enzyme such as GNDL digestive Enzyme.

Two items that are key to good gut ecology are Lactobacillus and Bifidobacter. These two items are often very low in CFS patients. A low number of these two is a good indicator that the bad boys are in control. The patient can attempt to raise these items with Probiotics. There are many Probiotics available on the market. Some are seen as better than others. Treatment has to be personalized, and trial and error comes into play.

VSL #3 is seen as a quite good and well-researched probiotic. It is ordered on the internet. Culturelle, available in grocery stores and pharmacies, is also well researched, and has the advantage of being D-Lactate free. D-Lactate producing Lactobacillus and Bifidobacter probiotics are seen as a problem for CFS patients. Custom Probiotics makes a D-Lactate free combination of Lacto and Bifido. Harry, who runs Custom Probiotics, seems happy to talk about the advantages of his products, which he has designed himself. Mutaflor makes a probiotic that is seen as providing great benefit. This product can be purchased in Germany and shipped to America. De Meirleir and Cheney both use this product. Recently, Dr. Alan Logan on Cort Johnson’s most valuable site, has been promoting Align, a bifidobacterial probiotic. Align has a small amount of sugar in it, and is also D-Lactate free. Dr. Guyer recommends Allergy Research’s Russian Immune for boosting the immune system.

There is continuing research into various probiotics and their relationship to particular illnesses and to health in general. For instance. there is a probiotic in development that supposedly eats oxalates, for those of you that have that particular problem.

So it would be prudent to keep reading about probiotic research and keep in mind that it might also be useful to rotate probiotics.

One recipe for making gut ecology improvement might be this:

GNDL digestive Enzyme
Custom Probiotics, D-lactate free
Culturelle GG
Mutaflor
Russian Immune
Symbiotics Colostrum
Align
Glutagenics

Opportunistic Bacteria emerge for various reasons: lowered immunity, poor diet, parasites and so forth. Among these bacteria are Klebisella sp. and Citrobacter sp. They are identified and dealt with directly with anti-microbials or herbs.

Pathogenic Bacteria come next and include four items, including helicobacter pylori.

The Yeast/Fungi section will report on Candida. Candida is reported on the intensity of its presence, with various stages being indicated. Candida seems to plague CFS/ME patients. (Some people think candida is a cause of some CFS/ME.) Candida can be dealt with in several ways. The first way is through an anti-Candida, low-glycemic index, hypoglycemic diet. Information on this diet can be found is various places on the internet. Dr. St. Amand’s recommendations are particularly valuable. High candida can also be attacked by prescription drugs Nystatin and Diflucan - but the treatments often need to be repeated. Diet needs to be dealt with in a stringent fashion, and probiotics used to increase the proportion of good bacteria.

The Metametrix test identifies parasites in the gut. These can range from Hookworm and pinworms to a host of other parasites. Specific identification allows for specific treatments. Some of the most common parasites are listed in the Metametrix interpretative guide.

Adiposity index elevation is associated increased caloric extraction from food, whatever that means.

Beneficial SCFA (short chain fatty acids) are seen as wanting to be up in the normal range. “Production of SCFA in the intestinal lumen plays an important role in the maintenance of the intestinal barrier.” Low total SCFA and low n-Butyrate are seen as not being good. “Presence of short chain fatty acids and n-butyrate are essential for the health of the colon. In general, high normal levels of these could mean that there is an optimal fiber intake and a balanced bacterial population.”
These items are signs of intestinal health if they are present in the mid to upper normal range. Butyrate can be supplemented.

Propionate invites further questions for CFS/ME patients. Dr. Alan Logan wrote this: “Writing in the journal Physiology and Behavior (2004), these researchers showed that intestinal lactic acid, both L-lactate and D-lactate, as well as another potentially brain toxic fermentation product called propionate, were all involved in the behavioral disturbances.” So the picture with propionate is confusing.

Lactoferrin is a marker for gut inflammation and need to be treated if present.

Under Immunology, Fecal sigA is low - due to stress or high - resulting from immune response. Anti-gliaden sigA elevation is associated with gluten sensitivity.

Additional tests are self-descriptive and include ph, which seems to want neither to be too low or too high.

Digestion includes Elastase 1, which should be over 500. Low elastase 1 is associated with pancreatic insufficiency. High Triglycerides indicate malabsorption, and are high digestive fibers.

The last category is Absorption.

This Metametrix test provides a great deal of information. Much is known about the gut, but much is unknown. It is beginning to dawn on doctors that the gut might have something to do with immune function and chronic illness. In this Patient Advocates estimation, certain parts of the test are more important than others, particularly since there are treatments that can bring improvement. Certainly identifying pathogens, high enterococcus, high streptococcus, high prevotella, inflammation, low good bacteria can all point towards various treatments, diet, pharmaceuticals, probiotics, and herbs, that can bring improvement to the gut ecology.

And then there is the idea about biofilms that fills the CFS forums these days. What effect biofilms have on gut ecology is another story for another day.

Comments, corrections, suggestions, additions, and/or clarifications are welcome.

Ampligen Sunk

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

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.

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

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.

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