27 Apr 2018

My beliefs and maybe some controversy


I hope this does not offend anyone, as it is not intended to do so. I would just like to provoke discussion and maybe help people come to the same conclusion I have.I think that I am beginning to understand this disease CFS/ME) as a whole, but especially in my case.


Clive- I don't think there's anything controversial in what you are getting at here, although the metaphor gets a bit turgid and long for me! Basically: in CFS that clearing the infections may not clear all the disease either because the infections were part of other systemic imbalance or because the infections cause sytemic damage or imbalance that could continue after it's cleared. Looking at the cumulative research over the time I've been at this I'd say this is probably the case, but we just don't know which end is swinging the cat yet, the tail or the nose. A brief list just for a few examples:

  • There are genetic factors (APOE genes) that dispose some to Cpn infections that also are found in diseases like heart disease, Alzheimer's, and others.
  • Chronic inflammation can cause permanent tissue damage.
  • Reactive oxygen species and neurotoxicity, from porphyrins for example, could cause permanent damage in sensitive tissues like the brain (we really don't know).
  • Cortisol appears to pump up Cpn infection, suggesting that chronic stress or chronic adrenal stimulation does likewise, and may make recovery from Cpn infection more difficult.
  • Because an infection initiates a disease process, it does not necessarily follow that clearing the infection will stop it. This could be the case in some auto-immune reactions initiated by Cpn infection where, once started, are maintained by other factors.

The list goes on. This is something we all have to grapple with in terms of the reality of how little is known and understood about what we are dealing with. Most of us take this route not because this is a certain bet, but because it is the best bet we have: we know (from treatment reactions) that infection is involved and responsible for a lot of our symptoms, even if we don't know that it's the whole thing.

rethought ....

M.E./CFS 20 years, intermittent.  Wheldon Protocol - Started NAC and supplements Sept 2007. Doxy and Roxy full dose by Dec '07.  First Flagyl pulse January 2008.  Changed to Tini in December 2008.  Stopped CAP in February 2009 at pulse 16.