This is the start of a series of posts dealing with remission from CFS/IBS/FM and related autoimmune diseases. There are many approaches that have reported a 70-80% remission rate. The last 20-30% is a concern for me. My model of CFS is simple to describe but not so simple to treat 🙁
Onset is the establishment of a dysfunctional gut bacteria that is stable. This shifts the production of amino acids, minerals, etc into a state that results in re-activation of one or more pathogens (Lyme, EBV, CMV, Q-fever and about 30 other known infections). The re-activated pathogens contribute to keeping the dysfunctional gut-bacteria stable. Until both the pathogens and the gut bacteria are normalized, the CFS condition continues.
Consequences of this model are
- Often a substance will result in one set of symptoms disappearing or improving. For example, I experienced Sjorgen’s syndrome disappearing after 3 days of Mutaflor
- Often a substance will work for only 2-4 months (as studies found for NADH), this may be because it impacts one species of one family which then disappears and the space it occupied was populated with a different species
For pathogens, the following are known mechanism that they use to defend themselves from eradication:
- Resistors — about 0.01-0.5% become long term sleepers. Most antivirals and antibiotics disrupt the reproduction process. A resistor sleeps through this!
- Biofilms — often produce by bacteria but exploited by viruses. This can view as a “space dome” that acts as a barrier to anitvirals and antibiotics
- Fibrin Walls — Instead of forming a biofilm to form a space dome, it uses the body clotting mechanism to create walled off valleys inside of tissues. Overtime some of the walls will be naturally dissolved, releasing the pathogen. Antivirals and antibiotics cannot get to these safe valleys
- Mutations — Studies suggests that some pathogens increase their mutation rate when they sense members of their own species dying. In other cases there may be several mutations already in the body. All it takes is a mutation that resists or ignores the antiviral or antibiotics to keep the infection alive
The easiest way to method to determine if biofilms are being exploited by pathogens causing CFS symptoms is to do a 5 day course of EDTA or NAC (or both together). This should be done only after under medical review. The expected result would be a worsening of symptoms (herx) for those days, followed by some improvement of symptoms.
- EDTA (Check with CFS friends in case they have extra — you only need 10-15 capsules to test)
Note Some people will claim that the herx is because you are full of toxins. I have been unable to find a single study where NAC or EDTA treatment for known surplus toxins (outside of autoimmune illnesses) produced a herx. It is more probable that the herx is due to pathogens then the typical toxins.