CFS 201 Treatment and Treatment Model

Following up on my earlier post, CFS 101, I want to first describe the model that I have concluded is the best model using classic scientific criteria (simplest that is consistent with all known data) and then look at the two dimensions of treatment:

  • Symptom Mitigation
  • Remission

Symptom mitigation is relief of symptoms but the conditions continues. For example, taking immune-system suppressants may reduce many symptoms and may create the illusion of remission — but CFS continues. Stopping the symptom mitigation results in the symptoms returning. Think of taking antihistamine for hay-fever, they do not cure it, just take away the symptoms.

Model

CFS (and in general all post-infection malaise conditions which could include post-vaccination as well as environment exposure to mold, organic phosphates etc) results in a stable dysfunction of gut bacteria. There was a recent microbiome study where they took gut bacteria from a half dozen diseases, ran the microbiome through big data algorithms, and developed a forecasting model. This model was 90% accurate when applied to new patients coming in before a formal diagnosis. At present diagnosing by gut bacteria is unlikely to be a clinical tool for several reasons:

  • It takes weeks to do the analysis
  • Only a few conditions has been studied — and they were done largely as academic proof of concept
  • This is new science and thus takes time to be accepted by a conservative professional like MDs

Premise #1: Infections and environments can alter gut bacteria.

” On the basis of only 15 biomarkers, a highly accurate patient discrimination index is created and validated on an independent cohort. Thus microbiota-targeted biomarkers may be a powerful tool for diagnosis of different diseases.”[2014]

Corollary #1.A: The gut bacteria shift produces many of the symptoms of the disease.

  • Different bacteria causes different symptoms in CFS. Gut bacteria is inherited and equivalent to a finger print. When it gets altered, it is uniquely altered resulting in unique symptoms.

For several post-infection malaise, there have been studies on how long it has lasted since technical remission. The short version is something like 60% are back to normal within 4 weeks (leaving 40% tired),  over the next 4 weeks, half of those recover (leaving 20% tired after two months), Around 6 months, the recovery rate drops to just 30% of those still exhausted, and by 2 years, the rate is down to just 10% every year. This agrees with a mathematical modelling study that found that a stable altered microbiome can fail to recover to normal after N months — a new stable microbiome (producing a different set of chemicals being sent into the body).

Premise #2: Recovering to a healthy microbiome without intervention occurs with declining probability over time

Treatment for Remission

There is a nice full text Pub Med article that is a good starting point: Manipulating the gut microbiota to maintain health and treat disease. [2015] which covers the entire scope of options.

” Even when causality between changes in the Firmicutes/Bacteroidetesratio and lupus progression requires further validation, these results will generate new hypotheses to test dietary strategies to correct dysbiosis in this pathology, suggesting a new therapeutic approach to treat autoimmunity diseases.”[2015]

Antibiotics – Prescription

This has been part of my treatment in all three cases of CFS that I have had. How does this work? Simple — it disrupts the gut bacteria! Exactly the reason many people do not want to take antibiotics. IMHO the best protocols are those of Cecile Jadin — long term rotation of different types of antibiotics. They need to be long term to de-stablize the dysfunctional stable microbiome. The antibiotics in her protocols appears to impact the typical species associated with CFS well. Note: we are using the antibiotics not to fight an infection but to destablize the gut bacteria.

Antibiotics – Herbal

The same logic applies to herbs and spices with antibiotic characteristics. As with antibiotics, the species impacted by each is very important — which typically means slugging through PubMed articles. The ones that seem to be effective are (in order of preference) are:

  1. Tulsi
  2. Neem
  3. Olive Leaf Extract
  4. Wormwood
  5. Haritaki

The typical dosage that I have worked up to have been 6 capsules per day (in the case of home-made capsules — “00” capsules). We do not know which are friendly to which probiotics, so if you have limited budget — do not take them at the same time as probiotics (if you have deep pockets, give it a try).

As with antibiotics, you should be rotating them regularly because the name of the game is disruption!!

Probiotics

Initially I was opposed to any Lactobacillus because of a lack of positive information for many species and negative for others. Today, I am in favor of including the following strains and species:

  • Culturelle – Lactobacillus rhamnosus GG (ATCC 53103) – well documented on Wikipedia.
  • L. Reuteri — as many different strains as you can obtain (I currently use 3 different strains)
    • This species produces B12, which CFS are usually low in

The following are documented to be effective for IBS — which tends to ~ 80% co-morbid with CFS

  • Align – Bifidobacterium longum subsp. infantis 35624
  • Prescript Assist

Lastly, because E.Coli is typically very low or non-existent with CFS,

  • Mutaflor – E.Coli Nissle 1917.

On my secondary list are any Bifidobacterium-ONLY probiotics. I still avoid taking any lactobacillus acidophilus, while it has some health benefits for healthy individuals, it inhibits E.Coli (which are at unhealthy low levels with CFS) [2015]

Since our intent is to disrupt and replace with good ones, and the recommended dosage is for maintenance of a healthy individual, I have typically (after consulting with my health professional) gone up to 3x the recommended dosage.

Fecal Transplants

This has resulted in short term remission (i.e. 6-9 months, from correspondence) to permanent. There are challenges in getting it done (although there is medical literature going back almost 2000 years), for example:

“In the USA, their Food and Drug Administration has classified fecal microbiota as a drug, and by this classification physicians have to submit a time-consuming application,”  [2015]

Attack the Reserves

Good oral health is essential — and I think a little clarification is needed. Toothpaste and mouthwash impact cavities but not oral bacteria (or impacts in the wrong way!). The use of a water pic followed by rotating different oral probiotics (usually dissolved in the mouth) should be part of daily hygiene. Rinsing with EDTA or NAC dissolved in warm water (to break down biofilms) should also be considered.

“around 50% were suggestive of oral isolate, raising the possibility of oral commensals invading the gut.” [2014]

The use of biofilm busters to expose the gut bacteria to the above agents may also be needed. There are a number of biofilm busters such as EDTA and NAC. Several herbs and other supplements are also biofilm busters.

Treatment For Symptom Relief

The following is reported in the literature as reducing CFS and/or FM and/or IBS Symptoms:

On top of these are anti-inflamatories, like TNF-Alpha reductors.

Coagulation Relief

Dave Berg, Hemex Labs, found that hyper-coagulation is often involved (85%). Coagulation can act the same as biofilms, allowing reserves to be kept alive and thus keep pumping their chemicals into your system. The gotcha is that this is generally associated with an inherited coagulation defect and there are many! Each have different characteristics. Piracetam (cited above) and Turmeric(with 1% black pepper) have very similar impacts on some form of coagulation plus the added advantages for Turmeric of  being a antibacterial, antiviral, and antifungal [2014].