Monday, August 17, 2009

Gut dysbiosis

As my patient rests in her room there are a number of things that can be done for her. This does not include brain scans or sleep studies. The time for doing these things has passed. We missed our opportunity with these items, for better or worse. These tests should have been done when the patient could move around a bit. It is a lesson to be learned for others. Pay attention to this disease when you have the chance. Thinking it will go away on its own is wishful thinking. The patient has to get involved. All patients who improve from this disease get involved in their own betterment. Betterment will not come on its own, and it will not come to those who are not able to get involved. This disease is not for the faint of heart.

There are clear areas where the Patient Advocate and the housebound patient can work together. Many tests are available – blood, urine, saliva and stool samples – and can to be done in the home. In this regard we live in a quite amazing age. The problem with these tests is that they are deemed experimental and are not reimbursable in most instances - and don’t count on Obamacare to take care of this. Obamacare will pass over CFS/ME.

I have spoken elsewhere of the importance of assessing the thyroid, and regulating it, if it is determined to be necessary. It is best to work with a good doctor here. I have spoken about the importance of eating an organic diet, low carb, with modest animal protein and plenty of fresh vegetable. Drinking the right water is important. Attention has to be put on everything that the patient puts in her mouth. Don’t expect to hear much about this from a doctor. A few doctors – de Meirleir or Dr. Rae – work with a nutritionist. Many doctors are real squishy on diet and the Patient Advocate is on his own here. Fortunately there is a huge amount of information on the internet, although much of it is controversial. Sleep is another very important variable that can be dealt with in the home. It is important to find out if sleep apnea is present. Sleep apnea has a treatment.

Another very important area to look at is the gut. Many CFS patients have gut dybiosis or leaky gut. This is a situation where molecules pass through the wall and provoke an immune response. This is a situation where pathogens in the gut create havoc, producing excess d-lactate or hydrogen sulfide. It is very helpful to read Leo Galland’s article on leaky gut. Dr. Teitelbaum also is very good on the subject as is the CFS/ME doc, Dr. Kenny de Meirleir, who is seen as a strong advocate of the involvement of gut dysbiosis in CFS/ME.

The gut is an immense area containing 70% of the immune system. Supposedly if the intestines are laid out flat the surface they are as large as a football field. You can believe this or not. The intestines are a bit like modern day Iraq or Afghanistan, a place where contending forces are at work, where real battles between the forces of good and bad are taking place.

All this activity in the gut is complex and intertwined, often in ways that are not completely understood today. However much work is being done in this area and the connection between various diseases and problems in the gut is being accepted more widely. Ideas that only a few years ago were seen as being kooky are gaining a foothold in standard practice. Years ago, in a different set of health issues, this Patient Advocate read a book by Oliver Sachs called Migraine. Oliver Sachs is a truly fantastic person. This PA was surprised by the connection that was drawn between the gut and the brain in migraine disorders. At the time, it seemed like such a strange idea. The brain is heralded as a complex and important organ, but the intestines do not have the same panache, at least not in modern times. It is all so messy. It was seen as quite different in ancient times up through the nineteenth century. On a humorous notes I remember that fantastic scene in Moliere’s Imaginary Invalid, where the doctor carefully stirs his patients’ diarrhea with his finger, holds it up, and then tastes it.

Diet has an important influence on gut ecology. Everything that the patient puts into her mouth has to be scrutinized. In order to try to determine what is best for the patient, a food allergies test from Genovas can be done. This will tell what foods provoke allergic reaction in the patient - and these foods can be diminished or eliminated. Various allergy clinics deal with food allergies. My patient has been tested extensively for reactions to mold and foods a number of years ago with an allergist, Dr. George K. in Lacrosse, WI. Dr. George K is an excellent doctor, thorough and caring, among the very best imaginable.

Gut dysbiosis can be examined with various tests. Primarily among them are tests done by Genovas. These involve taking several challenge items and measuring the results through a urine test. An Immunobilan test is offered by Redlabs. This test that measures certain IgAs and IgMs. These reading indicate whether provocations exist in the blood, through leaky gut, or whether there is pathogenic activity within the gut itself. Once problems are identified they can be treated. A very simple home test for excess production of hydrogen sulfide has recently been developed. Whether this will have any bearing on treatment remains to be seen. There is some speculation that high levels of enterococcus and streptococcus produce an excess of H2S, and this in turn unleashes a cascade of symptoms. Treatments are currently being proposed for the problem, once it is identified.

The backbone of testing the gut in the CFS/ME patient is the CDSA. This test is offered by several labs, and they differ slightly one from another. Genovas test has been around for a number of years and was recently expanded to a more comprehensive test. Metametrix introduced a test a few years ago using DNA sampling and claims to get the most accurate results. The Metametrix test is called the GI Effects test and measures a host of elements. It is also a relatively patient friendly test. A test also is offered by Diagnostechs called the Expanded Digestive Health panel. This test can be procured on the internet without a doctor’s prescription. Finally there is a Microbial test available from R.E.D. labs in Belgium that directly measures streptococcus and enterococcus.

These tests look at a number of key elements of the gut: potential pathogens, good and bad bacterium, candida, and parasites. Any number of these items can be responsible for destabilizing the intestines and causing dysfunctions of the immune system. Treatments are available for a number of items. Parasites can be killed. Candida can be pushed back with an antifungal - diflucan or nystatin. The relief from candida often is temporary, as some patients, like my daughter, have a high sensitivity to candida. Candida is always a threat to come back. In my patient’s case, treatment with Dyflucan or nystatin brought no noticeable benefit. However the benefit to some can be quite dramatic, once the overgrowth of candida is killed.

In the case of Candida, diet plays a key role. The patient has to eat a diet that starves the suckers. Sugar and anything relating to sugar is the primary culprit here. The patient has to be in the mood to give up “a lot” in order to get the gut in order. Major and continuing dietary changes are necessary. Many folks do not want to make these changes, even though improvements can be seen in those who tighten up their diets.

Many CFS patients eliminate dairy, wheat, sugar, caffeine, alcohol, flour, high carbohydrates, fructose, and nuts in order to get the gut under control. Any potential aggravating source is eliminated. Others will eliminate particulars that have a specific deleterious effect on them. Dr. Myhill recommends eating a Stone Age diet.

Once gut problems are identified, they can be dealt with, either with short-term antibiotics, diet, antifungals, antiparasitics and the introduction of good bacteria, i.e., probiotics.

In the gut ecology of the CFS patient, the bad guys are seen as winning. Whether this is the cause or an effect of the disease pathology, no one knows. However a number of doctors and researchers now believe that autoimmune diseases originate in the gut- and to defeat these diseases one has to start in the gut. Much of the cutting edge work in Autism involves diet, food allergies and gut ecology.

In this intestinal battle, bad bacteria gets the upper hand. This situation can be with or without overt symptoms. The patient must take step to reverse this situation, and move the gut ecology to a more harmonious balance. The primary tool in the battle, beyond those already mentioned, are Probiotics, Probiotics are good bacteria, found in yogurt and other foods. They also come in supplement form, and in a large variety of combinations. Consuming probiotics is seen as a direct way of balancing the good bacteria with the bad. Probiotics include lactobacillus and bifidobacterium, of different species and in different combinations.

Various probiotics are seen as being good. These include Culturelle, Klaire products, VSL#3, Mutaflor (shipped from Germany), Align, and a host of others. Recently there has been a heightened awareness of lactobacillus that create d-lactate. Excess d-lactate, along with excess H2S, is seen as a marker for increased symptoms. CFS patients are looking for probiotics that do not promote d-lactate.

Good bacteria has to both be introduced into the gut and also allowed to colonize there. Some probiotics just go right through the system. Various elements prohibit the colonization process from taking place and this has to be dealt with. Repeated stool testing can gauge efficacy of the administered probiotics. Probiotics are an amazing subject about which there is much to read. A great deal research is going on at the present time looking for association between particular probiotics and specific diseases, ranging from cancer to schizophrenia.

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