Having fully recovered three times over 40 years: the first time due to misdiagnosis that resulted in appropriate treatment (before CFS or Lyme existed); the second time due to a treatment approach that claimed 75+% recovery (and 3 of the 4 of us did recover!). This last time due to an approach of what CFS may be that is likely far closer than prior models.
The question of whether I had CFS is really moot this time, SPECT scans were abnormal in the manner the chronic Lyme and CFS are; Vitamin 1,25D was sky high – seen with FM, CFS, and many autoimmune disease (and returned to normal due to treatment).
The model is simple to describe — but difficult to create a “simple” treatment plan for because the key factors are inherited (not in your DNA but in you gut bacteria DNA). CFS is a stable gut bacteria dysfunction that impacts metabolites (B12, magnesium, and possible bad stuff etc) that are produced by the gut bacteria.
Contrary to urban myth, antibiotics do not kill ALL of your gut bacteria, only selected species (depending on which antibiotics). Conventional probiotics usually contain species that will out compete or impact(by producing their own natural antibiotics) a few other species. The typical example is Lactobacillus Acidophilus reducing E.Coli populations.
Gut bacteria tests only covers a handful of species and rarely identify if the species that are there are good or bad. Auzzie studies did find a common pattern (Low E.Coli, High levels for a half dozen other species).
Treatment will often make you sicker for a while, typically 7-14 days before any improvement. Sometimes, massively sick with extremely nasty headaches.
My latest recovery illustrated to me that addressing specific species shifts (killing or supplementing) impacts subsets of symptoms. Dry eye, dry mouth disappear with E.Coli supplementation. Cognitive improvement increased greatly within 10 days by killing other species off with Neem and Tulsi at 3 gms/day.
The real problem is that each of us has about 150 species out of 1500 “good bacteria” species when we are healthy. Effectively, they are as unique as finger prints! When CFS hits, the species shift is unique (hence the unique symptoms). Even if we knew the exact species shift, treating that shift is complex. The herb haritaki kills some of the high species, but also kills some of the low species (and normal species). The same applies to all of the antibiotics and herbs.
I targeted the low species by finding the right supplemental probiotics (not easy to obtain) and searching through hundreds of antibiotics and antibiotic-like herbs to find ones that had the right profile for those species that were high but did not severely impact the low species.
My game plan was derived from:
So the problems for recovery are:
- Herx /feeling sicker for a while
- Not being able to tell if there is an improvement (forgetting how you were!) — I test myself with Wii Fit every day. When I herx, test performance drops badly then it returns to normal
- Getting the RIGHT probiotics needed (cost, and for the most critical one, having the hassle of having to import it into the US because the FDA deems it to be a drug!)
- Getting the antibiotics Or natural herbs/spices that are antibiotic like (MD issues for the first, ND issues for the second — my ND, who is a specialist for CFS, did not have that knowledge when I started).
Will I get CFS? Again, given what it is, it is possible. At the first signs of it, I do have a varied supply of supplements on hand that may stop it from becoming established….
Best to you all!