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

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.

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.

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.

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..

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.