Eleven years ago there were four of us that started treatment for CFS using a combined Jadin-Rickettsia and Berg-Coagulation protocol. Three of the four went into full remission, the fourth did not. This agrees with studies reporting a 70-85% success rate. Of the three that recovered, one had a IBS diagnosis that progressed into a Crohn’s diagnosis.
Clearly, the treatment was a “near miss”. There was some aspect that was significant but unknown. It did not always come into play for every patient — but for 25% of patients it does. These failures resulted in me keeping an eye on CFS research and treatment over the last 10 year — trying to find and understand the missing piece. I do not know the entire missing piece, but I suspect the the gut bacteria dysfunction is a significant part of it.
Both of the failures cited above have started on the correcting the gut-flora approach, with very positive results so far. One of these is very probiotic sensitive.
The Probiotics Sensitive
The individual cited above, was able to eat yogurt. She had a severe, debilitating from taking almost any probiotics. Slowly trying different single strain probiotics, we found one that worked, Lactobacillus Reuteri. Yes, she herxed from taking it but found that she had increased energy afterwards (which may be due to increase B12 production). This was an acceptable trade off — so she is continuing taking Reuteri.
How long to take Reuteri? The answer is actually very simple: “Until she no longer herxs”. Once that occurs, then it is time to see what probiotic she is able to tolerate next. It is a slow process. There is no benefit from killing off the bad bacteria if there are not good ones ready to muscle into the space generated.
She has been gluten sensitive, so 100% rye bread has been avoided — however,at some time, I would like her to try german made, 100% rye bread. Why? because it appears to be the best FOS for encouraging good bacteria. I speculate that gluten sensitivity may be also be due to gut bacteria dysfunction.