CFS: Challenge of tracking progress

Allergies and Microbiome – Is there a relationship?

A recent comment stated  “I had an allergic reaction to both CoQ10 (of which is listed as a “core” on this blog) and SAM-E – both of which are known to be required for the synthesis of ATP production.” I decided to do a little digging into this area.

CoQ10 – The literature

  • We know that CoQ10 levels are lower with bronchial asthma [2002], [2002] [2005] and with food intolerance and allergies [2011]
  • We also find that some bacteria can impact CoQ10 [2003] and that different bacteria produces it [2012] [2010]

SAMe (Ademetionine)- The literature

The wikipedia article is an interesting read but has no reports of allergies. PubMed searches turned up similar findings as above, including production by bacteria.

We can similarly go on to other allergies, such as peanuts which had had an exponential growth as well as autoimmune. There is much speculation as to the cause.

My own speculation is that there has been an alteration of the microbiome from changes in food and that the root cause if this microbiome shift.

Inferential evidence come from some recent work:

  • Mouth Microbes Influenced by Ethnicity “a machine-learning classifier was able to reliably identify a person’s ethnicity based on their subgingival microbes.”
  • Black children have higher incidence in same urban areas than hispanic and other races [2012] [2012]
  • Arabs and Jews in Israel have different allergy profiles [2012]

Our microbiome (including mouth) appears to have evolved with our traditional (ethnic) food and been passed along by such items as children sticking their fingers in their parent mouths.  When this healthy population is subject to a different food supply (change of diet), then the microbiome shifts because there is an abundance of food that one uses, and a decrease in the food another one needs. A good population goes bad.

How to treat? Two experiments would be interesting to see if they impact allergies, especially peanut allergies,

  • The oral probiotics:
    • Jarrow Formulas Saccharomyces Boulardii + MOS
      on Amazon (90 capsule for $18) – Saccharomyces Boulardii
    • Now Foods OralBiotic on Amazon (60 capsule for $14) – Streptococcus salivarius BLIS K12
  • Fecal transplants or the new proposed pill version

The chemicals producing the allergic reaction may well be a result of chemicals released by the microbiome when exposed to these foods or supplements.

So what does my maintenance plan looks like?

I am recovered – and prefer not to relapse back into CFS again.

Probiotics:

One week at a time, followed by 1-3 weeks off them

  • E.Coli Nissle 1917 (Mutaflor)
  • Prescript-Assist
  • Bifidobacterium infantis 35624
  • Lactobacillus Reuteri
  • Bacillus Coagulans
  • Streptococcus oralis, Streptococcus uberis, and Streptococcus rattus

Coagulation

Usually as needed, or one day each week

General

Regular parts of my diet

  • 10,000 – 20,000 IU of Vitamin D3
  • Multivitamin with minerals
  • All Rye – rye bread (Non-GMO)
  • Goat Cheese
  • 85% Dark Chocolate (190 gms)

As Needed if cognitive issues

  • ALA
  • Grape Seed Extract
  • Haritaki
  • Neem
  • Tulsi

Peanut Butter – a complex food?

During my second episode of CFS, I had a craving for peanut butter very early on. Peanut butter on Swedish Rye Crisp Bread.  Later, as I recovered and grew familiar with research; I came to the conclusion that it was my body ordering my mind for the ingredients to produce red-blood cells. Many CFS symptoms matches hypoxia (altitude sickness) symptoms. Hyperbaric oxygen does reduce symptoms in CFS patients (2013 study) and many patients mentioned that their symptoms get worst with increase in altitude. Similarly, David Bell,MD found that circulating blood mass is low in CFS patients. Lastly, Dr. Leslie Simpson found that the red blood cells are deformed with Chronic Fatigue Syndrome (1991 ).

A summary of what is in peanut butter is available here. I recall find a reference to peanut butter providing all of the nutrients needed to produce red blood cells except B12 (hence B12 supplementation, or the B12 producing bacteria should be supplemented at the save time). Unfortunately, I am not able to locate this precise reference or an equivalent. References that I did find are:

I am aware that there are concerns about peanut butter being high in arginine which encourages herpes virus (which are associated with CFS in some people). For the background and a list of foods, see this site. Also, peanut allergies is a concern (which appears to be treatable by probiotics — or make it much worst!). So, this is strictly a sharing of my experience that some may wish to consider.

Early symptoms of possible auto-immune (FM/CFS/ etc) onset

There are two onset patterns seen with most CFS: sudden and gradual onset.

  • Sudden onset is associated strongly as a post-infection retaining of an altered microbiome. The gut bacteria did not return to normal after being farmed  by the infection. A patient did recover from the infection, NOT — the organism causing the disease was eliminated, but the trauma to the gut bacteria stayed on.
  • Gradual onset lacks this ability to identify a point of time (or the point of time was sufficiently insignificant that memory of it is lost).

Yesterday I spent the afternoon talking with a very long term colleague and friend about career opportunities and paths. He is a very successful professional in the early 40’s. He has been giving 200+% to his employer for a decade. He mentioned:

  • 6 months ago becoming gluten sensitive,
  • 3 months ago: lactose intolerant
  • There is no history of either sensitivity in his family
  • He has noticed a significant drop in his energy and ability to focus for extended time
  • Lab tests have shown very low vitamin D and B-12 levels
  • He is still able to work a full days.

All of the above, are characteristics I have seen time and again in people with auto-immune conditions such as FM or CFS. Low vitamin D, low B12, cognitive issues, and food insensitivity are seen in over 80% of CFS and FM patients. Having those conditions is not diagnostic, other condition present with them. A CDC-strict CFS diagnosis or FM diagnosis require additional criteria to be satisfied.

My Speculation (I’m not a MD so I can’t diagnose)

We know that random mutation of bacteria and stress resulted in some bad bacteria becoming established. We know:

  • “Neurobehavioral factors, such as stress and depression, also influence the risk of IBD (Irritable Bowel Disease).[2013]
  • “Also, food intolerances are very frequent, but usually inconsistent among IBD patients, and therefore no general dietary recommendations can be made in these patients.”[2012]
  • “Vitamin D3 deficiency is rampant which may contribute to increased risk of many diseases including cancer, cardiovascular disease and autoimmune disorders. ” [2013] this article goes on to describe alteration of RNA due to Vitamin 1,25D and 25D.

A search of PubMed finds some 2200+ articles on stress and autoimmune.

Testing for most autoimmune conditions early is unknown — usually diagnosis is made when the condition is well established. Often symptoms are blown off by medical profession as “aging”, or in the case of women as typical of “pre-menopause, menopause or post-menopause”.

Personally, I believe that testing for Vitamin 1,25D levels is likely the best early test to indicate the auto-immune direction. Vitamin 1,25D levels appear to be independent of Vitamin D (D3, 25D) levels which is what is normally tested for.

  • “Results showed a strong positive association between these autoimmune conditions and levels of 1,25-D >110 pmol/L.” [2009]

My own experience is that 1,25-D went very high with onset and dropped down to the normal range with successful treatment.  A value near the top of the normal range should be of significant concern.

Treatment Consideration

These are suggestions for him to discussion with his medical professionals. Since the symptoms are dominantly gut associated (food intolerance) then the two probiotics associated with successful treatment of Irritable Bowel Syndrome would be an excellent starting point — two weeks on one, and then two weeks on the other.

  • Easiest to obtain: Align, in many pharmacies and on Amazon (98 capsules ~ $70 is best buy) – B. infantis 35624 ONLY; IBS effective, see my earlier post.
  • Prescript-Assiston  Amazon (90 capsules ~ $60 is best buy) – 28 species, none are Lactobacillus. IBS effective. See my earlier post.

Because of the low B-12 levels, L. Reuteri also appears to be a good choice as explained in this post. I suspect/speculate that it can be taken with the above without significant loss of effectiveness. See this post on how to take it. Sources:

  • BioGala Protestic: on Amazon (30 sticks for $27) –  Lactobacillus reuteri Protectis ONLY . From Sweden
  • Jarrow Fem-Dophilus: on Amazon (120 capsules for $52) –  Lactobacillus rhamnosus, GR-1® and Lactobacillus reuteri, RC-14 ONLY . From Denmark

Needless to say for old timers — changes of probiotics should occur on Fridays in case “die-off” happens from the battle betwen probiotics and the bad bacteria. Starting at a low dosage (sprinkling 1/2 capsule on yogurt for the first day) is also suggested to allow the war between bacteria to be more tolerable. Of course, we cannot predict if there will be a war.