Hi everyone I am looking for some first hand accounts of Minocycline...reason being that I was feeling mostly good for quite some time with Ceftin/Biaxin/tinidazole and switched the Biaxin to Minocycline and noticed I gradually started to sink.
I'd been on Ceftin for about 9 months at only 2000mg a day and maybe the bacteria were getting used to it, but I thought Minocycline was maybe the weak link.
Any thought/experiences to share?...don't want to but more expensive macrolides if Minocycline is legit...
Thanks
Posted by JOLA (Member # 23498) on :
Hey Victoria, Just had visit w/Dr. R yesterday and he took me off ceftin/biaxin combo and switched me to mino/flagyl
Said mino does good brain penetration so hopefully will help w/brain issues I'm having.
Will pick up Monday so will post and let you know how it goes.
Posted by lyme987 (Member # 22148) on :
Hi Vicotoria,
I also just saw Dr. R on the 15th and was pulled
off minocycline. I have every lyme and every co-
infection that goes with it. I was making
pretty good progress with iv's, im shots, and
orals. I was on minocycline and mepron for babs
but when I upped my dose to three times a day
(day 24) all hell broke loose. I guess that's a
pretty good thing. It must have been hitting it
hard but I thought I head was going to explode.
My body is pretty much a tank and I can
withstand any protocol thrown at me so far.
This was a no go for me. I'm actully goin back
on iv zithro and cleocin and mepron and hope to
blast these &*#$# to the place the came from. I
hope you have more luck. By the way this is my
17th month on treatmentfor neuro lyme.
Definetly better- not
all there- but will be there one day. Here's to
better days!!!
Posted by Keebler (Member # 12673) on :
- Some do fine with mino. Others have ear trouble with it. If your ears do okay, great. But, if not, try to switch at the first sign of tinnitus or vertigo.
B-6 and NAC can help. Liver support is essential when on mino. -
Posted by minimonkey (Member # 8693) on :
Mino is doing well by me. I was in remission last year, then relapsed after 6 months off meds. I have a new LLMD, she has me on mino... and it is doing wonders.
The first few weeks was a terrible, terrible neuro herx (spacy, dizzy, lots of nerve pain, L'hermitte's sign, etc.) but... now I am doing much, much better.
Good luck and fast healing to you.
Posted by migs (Member # 16496) on :
hmm good replies. Maybe it's not a waste of time after all. Sounds like many people are using it...
I seem to remember Burascanno saying minocycline was ineffective against Lyme a years ago too but obviously other LLMDs are using it with effect.
Posted by Lauralyme (Member # 15021) on :
I'm on mino with good results so far. It does cross the blood brain barrier.
Sorry if you replied to my PM and my mailbox was full, I did clear it.
Posted by BHealthyNow (Member # 22537) on :
Couldn't take it. Had incredible vertigo.
Posted by AnnaL (Member # 18464) on :
I was on mino for about four days before Dr. R pulled me off due to extreme vertigo, balance issues, etc.
Turns out that woman are much more likely than men to have vertigo and other vestibular disturbance problems with mino. (Link.)
Anyway, mino is supposed to be very helpful if you can take it. I had to switch to doxy, which has been helpful.
Posted by B4LYME (Member # 23222) on :
Tried mino a few months ago. I got dizzy, weak, more emotional, and had a lot of tingling in my arms and eventually my tongue. I switched to doxy and don't have the same problems.
Women do seem to have more problems with this drug if you look it up. It's hard to say though if it was a drug side effect, herx or what.
Mino is supposed to have a smaller molecular structure and thought by some to cross the BBB better than doxy. It is thought to go after the lyme, erlichia, RMSF and have some effect on bart.
I don't know if that helps. How are you doing?
B4LYME
Posted by kelmo (Member # 8797) on :
Daughter has done well on mino. Really did help the brain issues.
Been on it for two years. Had to start VERY SLOWLY.
Posted by JOLA (Member # 23498) on :