I am on Doxy now and because of a strange reaction I am thinking of switching to Minocycline.
Could I hear back from those who have taken it if it causes the same intense reaction to the sun?
I am pretty much handling the sun issue, but now my skin reacts immediately to even lukewarm water.
Having a bath is my one real comfort that I always look forward to at the end of the day………a sponge bath does not cut it.
Also does anyone have any opinion or info about Minocycline having the potential to cause autoimmune issues?
That was the reason my doc did not want to put me on it and decided on Doxy instead.
Posted by Catgirl (Member # 31149) on :
I'm not sure about the sun, maybe it's a little better than doxy. Mino did give me vertigo.
Posted by Keebler (Member # 12673) on :
- Minocycyline (as are many Rx) is ototoxic / vestibular toxic and that's why many experience vertigo & tinnitus with it. I could not tolerate it but there are a few who do VERY well with it.
FIRST, be sure to read through this for the necessary ear protections to put in place and keep in place so you have a better chance:
LIVER & KIDNEY SUPPORT & and several HERXHEIMER support links, too. EAR support, too. -
Posted by Lymetoo (Member # 743) on :
How about Ceftin?
Posted by lolo (Member # 43186) on :
Lymetoo I don't know anything about Ceftin. Have you taken it?
My doc and I have talked about adding Bactrim DS
Posted by Lymetoo (Member # 743) on :
Yes, years ago. It was fine.
Posted by Nula (Member # 38409) on :
I loved Minocycline. It was the first drug I took -- together with Plaquenil. I made huge strides with both drugs until I had a relapse or babesia took over.
Mino took away my skin burning, my massive heart problems, the electric-shock-like feelings running through my body in the middle of the night, my air hunger ... (all of those symptoms, aside from the electric shocks, later returned) but Mino did amazing things for quite a while ...
Many of my symptoms are neurological, including balance issues, but Mino never caused any vertigo for me (I know it does for many, though ...).
On an intracellular level, Minocycline works better than Doxycycline. It did not cause an sun problems for me (but then, I'm not one to sunbathe as heat is making my symptoms worse).
Posted by migs (Member # 16496) on :
In my opinion, having used both extensively in combination and monotherapy, doxycycline is much more powerful against Lyme than Minocycline.
As for photosensitivity, it was very real for me with Doxy but not with Mino. Doxy made me sensitive to the sun, made me nauseous if not taken with food, and could give serious heartburn but also gave me strong die off and helped clear me up. Mino was minimally effective but had at least had no obvious side effects.
Posted by tulips (Member # 44773) on :
I didn't have extreme sensitivity to the sun with Mino and it quickly turned around my Lyme symptoms. In a very short time, I went from being mentally unstable to being completely normal with no more neurological problems. For tinnitus, I took Ginkgo which took 4 days to start working and completely cleared the ringing. I went to a thrift shop and bought some thin, long sleeved shirts to wear and wore sun hats as a preventative but I had no extreme burning sensations like you have with dozxy.
Posted by fitnesskelly (Member # 45806) on :
I take Mino. I've had more success with it than Doxy. I'm not sure why it makes me feel better when nothing else does, but that's the effect it has on me. I went badly downhill when I stopped taking it last fall. My understanding is that Mino creates a minimal damage on the gut (compared to other antibiotics...I believe all the Tetracyclines fall in that minimal damage category). That's the "good".
Here's the "bad": I did have quite a bit of vertigo the first several months on it (that has since gone away). It gives me acid reflux, so I have to take something for reflux (at a different time during the day, of course). I tan easy anyway, but I do notice that I tan just a bit easier than I used to and have developed more freckles and sun spots.
I have tinnitus anyway, so I'm not sure if the Mino increases the ringing in my ears. Also, I have not developed any autoimmune problems from it, however I am aware that it's a rare side effect.
Posted by lolo (Member # 43186) on :
Since started Doxy I wouldn't say I have been dizzy……but just a bit off balance
My coordination seems off not just with walking but stuff I do with my hands too.
It doesn't seem to be decreasing . I am wondering how long I should stay on it before switching.
I have been on it about 6wks. How long does it take the balance issue to clear. I mean if its going to.
I had tinnitus too before any ABX's but will try Tulips suggestion for Ginko.
I am treating Bart, Lyme and Babs plus CPN
Also taking Zith and Placquenil
Posted by lolo (Member # 43186) on :
I think my dominate symptoms right now are mostly Bart. With Babesia I get fu like symptoms.
Fevers, night sweats, etc. Those are gone for now.
It seems even when I am not in the sun if its really hot out my body feels weak…even when I am indoors.
May be Doxy related.
Does Doxy cause black moods? Not exactly depression just deflated, disinterested
Posted by fitnesskelly (Member # 45806) on :
Lolo, I have read that minocycline rarely causes depersonalization. I'd be willing to bet that Doxy might also cause it - sounds like what you are experiencing.
Posted by lolo (Member # 43186) on :
fitnesskelly You are totally right, thats exactly what it is!
Darn, that means switching would not get rid of that annoying symptom
Thank you so much for mentioning this cause I had forgotten about that being a symptom!!
At least now I know there is a cause, and its not me!
Just knowing that makes me feel a little better
Posted by lolo (Member # 43186) on :
My doc confirmed that Doxy and Minocycline can cause depersonalization.
She told me if it does not get better she wants me off the Doxy right away.
She normally allows me more input on whether I want to hang in there with an ABX or move on.
This time she was very insistent and said its unknown if once you get this side effect if it clears after stopping or has the potential to cause permanent change in brain chemistry….scary
Seems to be getting better but I need to keep an eye on it.
Posted by linky123 (Member # 19974) on :
We live in the south and our llmd prescribed minocycline as a matter of course in the summer months.
Posted by lolo (Member # 43186) on :
Just wanted to update my struggle with Doxy. Things are better and it also seems to be helping my brain fog quite a bit.
So I'm sticking with it for now. I make sure I don't go without shoes any more so the burn that made my feet unable to tolerate even luke warm water has gone.
I eat with it but it does seem to cause a general lack of interest in food and a sensation kind of like when you are pregnant and you
think about a certain food and it makes you queasy just thinking about it……less and less stuff is appealing to me to eat.
The depersonalization has subsided also…that was scary
I really think its helping my Bart, I just hope I can hang in long enough for it to really make a dent
Anyone know how long I would need to stay on it for it to help? Been on it almost 2 mos.
Posted by bluelyme (Member # 47170) on :