I stopped my meds, rifampin and mino due to horrible muscle pains. Its been about 2 1/2 days and I really feel pretty good. Has anyone remained off their meds just to see how they do?
I can't help but wonder if I would be bettger off them. I know a side effect of rifampin is muscle pain. So hard to know what to do. I am seeing my LLNP in a few days not sure if I should remain off them meds till I go to see her or if its too risky to be on nothing at all.
Daily pain is just to hard to function with. I have an accupuncture appt sched for Tuesday but got so much worse after the last one not sure if I should keep it or not.
Posted by pug7 (Member # 36995) on :
I finally tried going off and have been off ever since. No harm in seeing how it goes.
Posted by Ellen101 (Member # 35432) on :
pug7 how long were you in treatment? Were you having alot of pain or other symptoms while on the abx? How long have you been off ?
Posted by Marnie (Member # 773) on :
A long time ago, LLMDs thought pulsing meds was a better way to go i.e., on for awhile...off...on...off.
I'm not sure why they changed their minds about that.
If accupuncture made you feel significantly worse, why would you continue with that treatment?
Try a nice massage...a gentle one.
Posted by Keebler (Member # 12673) on :
- Ditto to Marnie's thoughts:
"If accupuncture made you feel significantly worse, why would you continue with that treatment?
Try a nice massage...a gentle one." -
Posted by Ellen101 (Member # 35432) on :
The only reason I thought about continuing with the accupuncture as I would assume I felt worse due to all the toxins moving around. Not sure. Unfortunately even the gentlest of massages had the same effect as well...
Posted by Keebler (Member # 12673) on :
- You didn't say if the acupuncturist is ILADS "educated" in that they are well read, etc. and lyme literate.
THAT really matters - a great deal.
I think - based on my experience - that you may have felt so much pain in your spine after the last acupuncture could be directly from the needles, the way they were inserted, how long in place - or if they exasperated tender and inflamed nerves.
If you keep the appt. be sure to tell them about what happened. Rather than insert a needle at the site of a pain, they can do other points that refer to that site.
Also, a good acupuncturist should be able to do acupressure instead - or mix and match. However, that involves them being with you - hands on - a bit longer to do the acupressure rather than just put in needles and go work on another patient.
Since the pain was in your lower spine, I wonder if they can pull on your legs a bit. My L.Ac. has done some kind of technique like that and it really helped. Gently, of course.
In any case, when I first started I could only tolerate needles in and out. Then for a minute - it took a long time to work up to 20 minutes sessions. But - even for shorter needle time - the time on the table resting afterward is very important.
There is an acupuncturist who posts here. I hope they will be by with some advice.
Also - be sure to plan to either go to a park and enjoy quiet nature - to your patio - or home and just rest. Do not go shopping or clean your house, etc. Sometimes we get so recharged from some appointments that we think we can do anything. But that fades fast, with fury.
Good luck. -
Posted by Catgirl (Member # 31149) on :
Keebler is right, a good acupuncturist should be able to do acupressure instead, or even press you first before putting the needle in.
I have found acupuncture to be a genuine godsend. Sure, I hate getting stuck, but the cumulative benefits are worth it. But I didn't have lots of pain in my spine though. Maybe you should just go the acupressure route?
You could always try herbs instead of abx for lyme and company. I am surprised how well they work (Byron White).
Posted by Ellen101 (Member # 35432) on :
She did not put any needles on my spine at all. While laying on the table I felt better. But on the ride home I was already beginning to not feel well.
Posted by philly78 (Member # 31069) on :
I go for acupuncture and the lady I see knows nothing about lyme.
Sometimes people do feel worse after acupuncture. Even those without lyme. It isn't that uncommon really. You will begin to feel worse on the same day you had the acupuncture but it shouldn't last very long.
If the worsened condition lasted longer than an hour or two, I would have called the place back. The way I understand it, is if the aggravation lasts longer than that, then it was not a healing reaction and more likely due to practitioner error.
Massages made my symptoms worse too Ellen but that got better the more I went.
Posted by pooldog71 (Member # 21722) on :
A lyme literate acupuncturist? That would be great but the odds are pretty slim in finding one. I was very happy that my acupuncturist was interested in learning a little about Lyme from me.
For me I sometimes felt better after treatment, but did not get any long lasting benefit.
Posted by dbpei (Member # 33574) on :
Re: whether to go back on rifampin... If I were you, I would hold off until you get to see your LLNP. Let her know how difficult this med has been for you and see if she can try something else.
Rifabutin might not affect you as badly (I did better on that) yet cover the same problem areas. Good luck!
Posted by pug7 (Member # 36995) on :
Ellen, I was on antibiotics for 6 years.It should have been much less. Every time I tried to get off, I would get horribly sick, and my LLMD told me I would have to stay on for life. I met with an integrative medicine MD who told me there is a withdrawal period when getting off long term antibiotics. The increased symptoms when I tried to get off abx were not from Lyme, but from withdrawal and my immune system adjusting. I really wish someone had told me that earlier!
Everyone is different. I did hear often, and believe, that even if you are continuing with antibiotics, a period of being off the meds may bring more bugs out and therefore make the meds more effective when you go back on (this was part of pulsing, and I may not be up on the latest).
I am not totally well, and don't expect to be, ever. But I enjoy every day. I have been much better off the antibiotics, but without a first year or so on them way back when, I would not be as functional as I am now.
Like you, I am neurologically sensitive to touch and also to movement. I have been doing Tai Chi for a year now and have made huge progress. It is gentle, under my control, flowing, and always aligned. It also is peaceful.