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Prevention of ME/CFS: a real story


Senior Member
Hi everybody,

I am very glad to share this story with you all, as I think this might help many “healthy” relatives of fellows with ME/CFS.

All started about two years ago, when Raquel, the mom of my girlfriend, showed me a regular blood test. She suffers from mild difficulty to find words, but other than that, she is perfectly fine health wise. It is important to note that my partner suffers from severe ME/CFS and chronic Lyme disease; also important is the fact that Raquel’s mom suffers from Alzheimer’s disease, given the fact that borrelia burgdorferi has been linked with this condition in a metaanalysis (maximum level of evidence) .

Raquel’s tests showed very high erythrocyte sedimentation rate (which she had had elevated for the last 20 years) and a high ratio 0,25-hydroxyvitamin D/1,25-dihydroxyvitamin D (both vitamins were within the normal range, although the 0,25-hydroxyvitamin D was near the lowest normal value, while the 1,25-dihydroxyvitamin D was near the highest normal value).

These abnormalities made me recommend her to had other tests done, which showed: partial block in the methylation cycle, low reduced glutathione, high oxidized glutathione, low NKs (CD56+ and CD57+), high mercury and other metals in a hair test and positive for borrelia burgdorferi by LTT (lymphocyte transformation test). After seeing these results, usual abnormalities in ME/CFS patients, we decided to go to Dr. De Meirleir in Brussels, who performed further tests on her, confirming more abnormalities, including: high ammonia (gut dysbiosis), high prostaglandine E2 (systemic chronic inflammation), high soluble CD14 (leaky gut), high inflammatory cytokines (IL-1beta, IL-6, IL-8, MIP-1beta), and a positive serology (IgGs) for Chlamydia pneumoniae and trachomatis.

Dr. De Meirleir accepted to treat her in a sort of a preventing way (I guess she could have gone down with ME/CFS, Alzheimer’s or any other related disease, at anytime, having those test results). The Doctor prescribed to Raquel a “light” treatment, which she took for a year, including: antibiotic herbs (Samento, banderol, cumanda), an intestinal anti-inflammatory (indometacine), B12 shots and two antioxidants (quercetin and turmeric).

After one year taking this treatment, she had a regular blood panel done, which was hopeful in that the sedimentation rate had gone down to half its value for the first time in 20 years (although it was still high); in addition, the vitamins D had both gone to the mid normal range. This apparently good signs have recently been confirmed by a follow-up battery of tests prescribed by Dr. De Meirleir. These new tests show lower ammonia and normal prostaglandin E2; also, all the pro-inflammatory cytokines were within the normal range, except for the IL-8. Only the soluble CD14 is still high.

Even though we still need to see if this improvement continues over time, this is actually the first time that I witness a potential prevention of what could have been an inevitable case of ME/CFS (or a related condition). I won’t get here into the debate of the possible role of the bacteria borrelia b. in ME/CFS pathogenesis. I’ll only say that Raquel’s daughter is a text book case of ME/CFS as well as a text book case of chronic Lyme disease; in this vein I also want to highlight that Doctor De Meirleir has been treating ME/CFS for more than 30 years, and that he has explained that most of his ME/CFS patients are positive for this bacterium and/or for its so called co-infections.

However, and beyond the legit debate about Lyme disease and ME/CFS, I think that Raquel’s story should give a great deal of hope for, at least a part of relatives of fellows with ME/CFS. She might have prevented a future disease; these facts seem pretty convincing to me on this regard. I really wish I had been able to do the same with my own mom, who fell sick 4 years ago (I have been sick for the last 14 years).

I really hope this is helpful,
Best wishes,