CFIDS, in some cases, may be referred to as CFS or ME/CFS. CFIDS has “Immune Dysfunction Syndrome” in its name–Which emphasizes the immune deficiency and chronic inflammation and cell damage from trying to battle pathogens (Viruses, Bacteria, Parasites, etc.).
Immune system dysfunctions include:
A. A shortage or dysfunction in a very important immune population called Natural Killer Cells.
Dr. Klimas and her colleagues in Floirida have quite a bit of experience in treating dysfunctional Natural Killer Cells–And they sometimes have success with different methods of addressing that deficit.
B. Low IgG levels that can be treated quite successfully with IV, IM or Subcutaneous Immune Globulin treatments at different intervals of time. .
C. There are a variety of other possible immune system abnormalities that are the subject of much research and clinical testing.
D. In fact, many patients have an immune system that is in an autoimmune state–That is, the body is attacking it’s own tissues. That is the basis of the exciting new research from Norway suggesting that reducing a specific population of immune cells (CD20 B Cells) can dramatically help some patients. That clinical study is being repeated.
Because of these dysfunctions of the immune system, patients can show abnormal levels of some or all of the following pathogens: herpes family and other viruses (e.g. EBV, CMV, HSV-1, HSV-2,e); parvvirus B19; enteroviruses, retroviruses and others, mycoplasma; coxiella burnetii (Q fever); intestinal parasites (e.g. blastocystis, giardiao, other amoebas, worms); and fungi (e.g. many molds such as aspergillus), and yeasts such as candida.
While it seems like killing these infections would be a good idea, many patients (especially those who are severely ill) have a very hard time with the inflammation that occurs from agents that help them attack their infections.
Even when attempts to kill the pathogens are tolerated, they usually work slowly. Often months are needed before improvements are noted, and patients who discontinue the treatments often relapse.
An immune system workup typically includes:
Natural Killer Cell number and function
Immunoglobulin levels: IgM, IgG, IgA
IgA, Parasites, Pathogenic Bacteria, “Dysbiosis–” or an imbalance with lower levels of “good” bacteria and high levels of “bad” bacteria in stool sample, and Mycotoxins in a urine sample of mold exposure is suspected.
Cytokines: TNF-A, Interferon Gamma, IL-10, IL-2, IL-6, etc. and T cell helper to suppressor ratio
CD47 and other specific immune cells.
Testing for chronic microbial infections can also include:
A panel from MDL, Igenex, or an equivalent lab to test for the microbes suspected and/or typically seen in the CFIDS patients over the years.
***Special Note on B Cell Hyperactivity: Anecdotal reports of at least short-term dramatic improvements in CFIDS patients in Norway with treatments of a monoclonal antibody against B cells have spurred the initiation of controlled studies.
Treatment involves 3 steps:
2. Rituximab (A monoclonal antibody against B cells)
3. Adult Stem Cell transplant.
Cost is significant ($50.000, yet this is a discounted rate for patients who apply via BGLI) It includes all aspects of the treatment including hospital admission, surgery, anesthesia, tests, and the 3 treatments.
Total treatment duration is 31-45 days of which the first 7 and last 2-3 are in hospital.
***Special note on Lyme diagnosis: Lyme is diagnosed first with a Western Blot. However, unless you had the classic rash, it can be difficult to diagnose. As a case in point, Dr. Martz was bedridden and “given up on” with with presumed ALS , and had a negative Western Blot for Lyme. It is only when he did a “stress test” for Lyme that he had positive result, treated the Lyme and reversed his disease and returned to practice. He is an advocate for screening any neurologic illness for Lyme or other chronic microbial infection.
One of the big problems with chronic microbial infections, is that they can be released from the GI tract into the body if there is the problem of a leaky gut. Furthermore, they can cause inflammation in the gut that creates a dysfunctional “gut/brain” communication that can result in “brain fog” as well as serious psychological illnesses. So it is a vital first step, after checking the above labs and a stool sample, to restore normal gut function.
As an example of how catastrophic leaky gut can be, below are pictures of A. normal gut tissue vs. B. severely damaged gut tissue vs. C. mildly damaged gut tissue.
How to Stop “Leaky Gut”
Use Prebiotics such as XOS or others and Probiotics (Take care in your use of probiotics as they can create excessive gut levels of the most common Probiotic, the Lactobacillus genus, so check Lactate levels in stool samples for a dangerously high lactate level which is toxic to brain cells.
You can use Bifidobacterium (which can have a difficult time “taking,” Propionibacterium freudenreichii which Dr Leo Galland notes has distinct metabolic effects that impact the growth, structure and physiology of the entire community of organisms in the GI tract, or a variety of different probiotic choices.
Chew your food slowly to release the enzyme pytalin that helps to digest carbohydrates, and helps release the Immunoglobulin sIgA, in the saliva, that fights microbes in the gut.
Most patients have decreased secretion of acid in response to meals: You can undergo a trial of Betaine HCL with meals or measure acid secreting function with a Heidleberg test. Appropriate stomach acid decreases with age as it is an energy intensive system.
Supplement vital amino acids 30 minutes before meals. (Especially threonine, the amino acid which is by far the most common amino acid in GI tissue) .Use butyrate and glutamine which are important GI energy sources.
Pancreatic supplements both for meal digestion and to break up “Biofilms–” which have been declared by the NIH as a major health hazard.
Gall bladder & liver flushes, intermittently. See “Detox Liver.”
Measure your load of heavy metals (DMPS challenge test) and remove them with: Cilantro with Chlorella, the chelators EDTA, DMSA, or DMPS, Seaweeds, or natural products that feed your organs for their removal. See Dr Mercola’s website as an example of one protocol.
Measure and optimize bowel transit time: In some cases, use colonics or at-home coffee enema’s to reduce toxic colon stool build-up. Increased oral intake of Magnesium and Vitamin C can increase GI transit time. “Vitality” or other herbal products can help improve GI flow. They typically contain Senna and/or Cascara and others.
Food sensitivity testing to check for “silent allergies.”
Elimination or Rotation diet to reduce food sensitivities.
Supplements, herbs and/or medicinals to help “calm” the inflamed gut. (“See “Cytokine Calming List” under Detoxification) However, if you have evidence of autoimmune disease, test for, or eliminate extra oral supplements.