This Is MS Multiple Sclerosis Knowledge & Support Community

Hello everyone,
Im several months in the "grey" zone, i dont have definitive diagnosis but I have a lot of MS symptoms for almost 1 year - fingers numbness, tingling in arms and legs, muscle weakness, tinnitus, nystagmus... I had MRI in October 2011, there was only 1 very small lesion (up to 3mm) in atypical area for MS (my neurologist said), lumbar puncture, VEPs, EMG, EEG were clear. My lyme literate immunologist thought I might have lyme disease or CPN (despite very unclear test results). He put me on CAP in november (minocycline, azitromycine, plaquenil) and after 2 or 3 days I felt much worse, then after one month on these pills I had another relapse and the last one came few days ago. Im on CAP for 9 or 10 weeks and everything is worsening.. Last 3 days Im taking only minocycline (100+100mg per day).. I dont know what Im doing wrong, is it possible that mino is accelerating my possible MS instead of healing it? I dont know what is better choice now - keep taking minocycline or stopping it? Thanks for your suggests...

James

hmn...I started with Mino and combinations with various macrolids several month ago after I had an optic neuritis. So far there were no changes, I did't have any ms signs..my mri looked the same (after 3month and after 7 months. And I never had any other complications...no diarrhea, no real stomach pain, etc...also my CBC & Blood Chemistry is still great (after 8 month of abx).

I'm not so sure whether I should believe the CPN Story or the fact that tetracyclines/macrolids might have a protective effect.
I would be interested in the results which the researchers in Calgary might have - they already finished a 3-years mino trial...and now..what happened to the patients after they stopped taking mino?
is the ms still stable, any improvements, or...was everything like before they started the abx treatment?

When will they publish the results? Ive heard about December 2015...

I took CAP for a total of four years: one full time and three intermittent. I had very severe progressive disease but since I started treatment I have had no relapses and no progression. I was delirious for the first couple of weeks so needed my husband to make sure that I took the stuff, but after the first two weeks I found that I had regained my calm and precise spoken language and also a clear mind. I think that if someone is not so badly affected as I was it might take longer to see the difference.

Minocycline and doxycycline are both immunomodulatory so both should show some use for MS even without full CAP. They won't make your MS any worse, but if you have an infection treatable by one of these antibiotics, you might well feel worse for a while as it starts to work.

Sarah