My LLMD told me a week and a half ago that he wanted me to go off my Rifampin (600mg/day) and stick with the Doxy to see how I do, since I've been showing some improvements.
He warned me that I might feel crappy the first week or so, but to call him if it went beyond that.
Well, I took the last Rifampin dose on Saturday, and this morning I woke up feeling like absolute hell.
My joints hurt, my vision is funny, I'm dizzy and spacy, my chest doesn't feel right, my heart is pounding, and I feel slightly feverish.
I take it that's what he meant by "feeling crappy?"
Has anyone else gone off Rifampin or another med and felt like this? Will taking Benadryl help the feeling at all?
Thanks.
Posted by jkmom (Member # 14004) on :
When my daughter went off Rifampin, she got worse than she has ever been. Her old LLMD still said not to give it to her any more or any other abx.
She never did get back on it and it took 6 weeks, at least, for her to get a little better. She has a new LLMD so we have completely changed her treatment. I am still thinking she will need to get back on it at some point, but I don't know what the LLMD thinks.
The first time I went off from Levaquin, I felt worse than I ever had before. I started it back up again and felt fine again. Later, I stopped it and still felt good.
I didn't think to try Benadryl when my daughter was like that.
Posted by daniel (Member # 22201) on :
@jkmom you mailbox is full so i write my msg here:
hey,
u wrote that you felt very bad first time u get off levaquin.. then u took it again and felt good..
i took levaquin 3 months now for bart treatment.. i had to stop is since 1 week because i injured myself while doin some exercises. since yesterday i feel so crappy.. i dont know whats the deal here.. this worse i didnt feel a long time. how did u make it with levaquin? did u take it again 1 week and then off or how??
greetz and thx for help
Posted by txgirl09 (Member # 21612) on :
Star,
I recently stopped rifampin (after taking it for 5 weeks). The first week I felt awful, and worked on detoxing. After a week, I really started feeling better. I agree with your dr to give it a week.
I was very skeptical at first to do this, but it worked out for me.
Posted by Starfall1969 (Member # 17353) on :
Thanks, txgirl.
My stomach has gone south over the past few hours, so I'm wondering if it's the meds or a bug.
Not quite as achy and stuff, but still feeling off.
My son's bday party is Saturday; not the best time to be dealing with this...
Posted by txgirl09 (Member # 21612) on :
Sure! Drink lemon water, take epsom salt baths, and really work on detoxing. It should help.
Ha, we just had my son's bday party and I felt horrible the whole time. I feel for you! Maybe you will feel better by then.
Posted by Starfall1969 (Member # 17353) on :
I've been pushing lemon water all day, and I just ate a little supper.
I'm hungry, but food just turns me off. Geez, almost like I'm pregnant (though I know I'm not).
Posted by seibertneurolyme (Member # 6416) on :
Starfall,
How long were you on the Rifampin at the 600 mg dose?
Hubby has finally managed to stay on that dose for 3 months. Then his LLMD increased the dose to 900 mg. He ran a fever for a couple of days. Then he got the results of his 2 times monthly bloodwork and several things were out of range. So he cut back the med to 600 mg and will retest bloodwork again in another week before trying the higher dose again.
It seems like anything that halfway works for bart or BLO or mycoplasma -- if he stops the med he can tell within 2 or 3 days at the most that symptoms are worsening.
Just not sure what to try next for this crazy infection. Hubby seems to be running out of antibiotic options and I have tried most of the bart herbs as well.
Please update in a few days about how you are doing and whether you go back on Rifampin or some other bart med.
Thanks,
Bea Seibert
Posted by Starfall1969 (Member # 17353) on :
Bea, I think I was on the 600mg dose for about 8 or 9 months.
Yesterday wasn't too bad, just had some weakness in my left arm.
Today I was playing some dance music and dancing around (yeah, yeah, I know, not a good idea), and now I feel like death.
I'm all shaky, arms and legs feel weak, chest is tight again, and my wrists kind of hurt.
Doesn't help, I guess, that we have a blizzard moving through right now.
Oh, I don't know if I can make it through a week or two of this...
![[Razz]](tongue.gif)