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.