Hi! I was diagnosed with Lyme based on a positive Western Blot test and a Sunnybrook test that was indicative on the 93 band (I think that was the band) I am on Minocycline and was wondering if others out there were also on it and if it worked for them. I seem to be getting better. There are ups and downs but I am able to move much better than anytime in the past 7 and a half years. Just wondering how long one has to be on the drug and if it really makes you better. I so long to be better all the way. also wondering how it works for others. Seems not to create too many problems for me so far.
It's great news that you are doing well on your treatment!
I don't recall anyone posting here about minocycline, but then my memory's not what it used to be, ha.
Also not familiar with the Sunnybrook test --
Sorry not to be more useful! Hope you continue to improve.
PS If you're up for some heavy reading, you might try the ilads [dot] org website, the 'about lyme' tab, and read Dr Burrascano's treatment guidelines. You could search for 'minocycline' and see what comes up. It's written for MD's and gets too heavy going for me after a certain point, but for what it's worth.
I was on mino for about 1.5 years, but in combination with other antibiotics. I was never on only mino, and it seems that many Lyme docs are using combinations as opposed to so-called "monotherapy."
Overall, I seemed to tolerate mino well. I am much improved compared to before treatment. I paused treatment earlier this summer due to life circumstances. When I resumed treatment, I seemed to have a bad reaction to mino, and I felt more sick than I had been in a long while. So I am not taking it anymore, but I only ran into that trouble after using it for well over a year.
You may notice some increased sensitivity to the sun while on mino, but it is not that bad.
By chance do you mean you had a Lyme test done at Stony Brook, and not Sunnybrook?
I was on antibiotics over a year ... it's not uncommon.
The reason is that Lyme bacteria have a VERY slow reproductive cycle, and I've read that bacteria can be killed most easily while they are dividing/reproducing. Non-Lyme bacteria reproduce very quickly, in a matter of hours per "generation", so two weeks of antibiotics has the opportunity to hit the reproducing bug many times. With Lyme, tho, it's so drawn out that the treatment must be also.
Some more traditional docs treat Lyme for ~1 month and say if you still have symptoms afterward, it's not that you're still sick, your body is just still having symptoms even tho the bugs are dead. Makes no sense to me, but that's the big argument in the medical community.
Just thanking everyone for their help and honest answers. It made me feel somewhat connected. Thank you folks. I am doing well but am going through a bit of inflammation and sluggishness this past couple of days. I am sure it will pass.
Thanks for your message, whiteshell -- glad to hear you are hanging in there. The symptoms you are having of 'inflammation and sluggishness' may be a 'herx', short for Herxheimer Reaction, named after the MD who noticed the process of feeling worse as the bacteria are dying off.
I think many of us here have experienced it -- some of us worse than others, each of us with stronger or weaker Herxes at different times. It annoys me that as many Herxes as I have had, I seem never to recognize them until they are almost over -- as they begin, I tend to think something new is going wrong. But after a day or two at the most, things get better.
You hang in there! If the maybe-Herxes get worse or are particularly bad, think about contacting your MD for a change in meds or dosages or other considerations, okay?
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