Hi All: i thought I read somewhere but can't find it again, that if you don't have red pee...it means you are not absorbing the drug effectively. I had it for the first few days... But since, it is a little darker but not red or orange. I have been taking it 2 hours after breakfast and at least an hour before lunch... Sould I put more time in there? Also, oddly, I no longer have that weird taste from the Biaxin. Does that mean I absorbing less Biaxin or more?
Also, I had a herx after 2 days, Horrible, unrelenting jaw pain that felt like mumps. Along with the usual body aches. I detoxed and felt better in 2 days... But every time I tak the rifampin (out of the pill in applesauce) I get sort of a tinge of that feeling in my jaws/glands right as I am take it... I rinse and gargle and drink a ton of water... But what is that? Is it an allergic reaction? Is it a local herx from direct contact?
And lastly, since taking rifampin my headaches have come back...mostly in the morning. Not as bad as they used to be, only had to take migraine meds one day. I used to call these sinus headaches as they happen every time the weather changes. I have not had them for a really long time. Or at least not daily but very rarely. But then again, our weather is changing a lot lately... And there is that deep drop in temps at night and warming up again in the morning. Sinus headache or Bart being targeted?
All in all, I have felt so much worse.... But i don't like this drug. It makes me racy and ravenous (can't gain more weight) and a general feeling of not being right. and I am only on half the dose right now. But if this sounds like killing going on I should just grin and bear it.
Thanks Lymeneters for weighing in.
Posted by surprise (Member # 34987) on :
Well, I understand. I recently stopped rifampin, and feel guilty about it- not sure what I have left, but Bart herbs.
Very much what you described I went through too- despite taking nystatin and many probiotics,
I got a big yeast flair- so stopped so I could go back on diflucan.
It probably was a big herx, but I agree, it's a tough drug.
By the way, I was doing full dose 1x a day in the morning- empty stomach.
Posted by Marz (Member # 3446) on :
If you can hang in there, I would.
I recently was told to quit after 5 weeks. This was my PCP who has some Lyme training.
I was disappointed because I know I was improving. Yes, it was hell at first, but my headaches started getting less intense as well as some other symptoms.
I'm going to try to phone consult with my old LLMD and see what she says, but really dread starting over with it since things have gotten worse since off of it for one week and afraid I'll experience the horrible herx all over again.
So hope you can handle it.
Sorry, don't know about the absorption question. Maybe take first thing in the morning so that nothing is in your stomach for sure?
I took the full dose just once in the am.
Posted by Marz (Member # 3446) on :
Surprise, have you considered or ever done A-Bart by Byron White?
I have an email in to a naturopath who I saw for the first time this week, to see if she could order it for me. Can't get it except through an authorized medical person.
Posted by surprise (Member # 34987) on :
Marz, I do have some A-Bart, I did it last year- also Beyond Balance for Bart,
I have Nutrimedix HH, reversatrol, clove,
so I think just stick to antibiotics for Lyme, and my ivermectin 1x a week. And Diflucan really helps me, but can't take it with rifampin.
This is my new plan, ha ha.
The thing about rifampin, too, is it is not good to start and stop- so I agree, try to hang in there if you can.
Posted by debilyn (Member # 35753) on :
I have the symptoms you're describing-- the jaw/teeth pain, the headaches, and the feeling wired or racey.
I've been on rifampin for about six weeks at the therapeutic dose. I take it an hour before my first meal.
I can't stand the way it makes me feel. I haven't slept a full night since I started it. I always feel wired, like I drank coffee or took amphetamines.
Also, I can't tell if it is helping me. The nodules on my shins are gone since the rifampin. My foot pain is diminished but not completely gone.
I can't tell if I feel so bad because I am not sleeping, because I'm herxing or what. But I know I don't like how it makes me feel.
My pee is orange-yellow after I take rifampin until about 8-9 pm.
Don't know about your other questions. I just wanted to say I'm struggling with this med too. I am also on Biaxin, so looking forward to the answer to that one.
I sure hope it gets easier soon. I really need to sleep.
Posted by canefan17 (Member # 22149) on :
I took Rifampin 1 hour before food. It absorbs best on empty tomach (I tried both, and no doubt empty tummy works)
VSL#3 Florastar
2 must haves for me on abxs ^^^
Posted by Kudzuslipper (Member # 31915) on :
Thanks Marz, Surprise, and Debilyn and Cane. So the general consensus is herx/hang in? If I took the rifampin first thing in the am? When would I be able to take my Biaxin and Amantadine? An hour later with breakfast? Or would I wait til lunch?
Debilyn, do you think our jaw/teeth thing is anxiety? Such weird symptom?
I am not feeling bad... I have felt a lot worse in the past year and a half. I just feel off. And I was feeling so awesome on Biaxin and amantidine alone (and gse)
Posted by ktkdommer (Member # 29020) on :
I made big gaines on rifampin. Felt the best ever this summer on it and others. I would hang in there.
I need to get back to taking it between meals that are timed better.
Also was taking diflucan for a bit. Makes me wonder if that is why I backslid a bit.
Posted by debilyn (Member # 35753) on :
Ks,
Yes, I think the jaw stuff is from anxiety. But is the anxiety from the rifampin, a herx, or Bart?
I guess it doesn't really matter where it comes from, but, yes, my anxiety level has skyrocketed since being on rifampin.
Hopefully, those of us taking it now will make big gains too after getting adjusted to the med.
My gut says to keep going with it, so for now going to keep on with it.
Posted by Larae30 (Member # 35220) on :
The first month or so on Rifampin was really tough for me, but it's a lot better now for sure. I wasn't sleeping hardly at all when I started it and I never really had insomnia before. I still wake up early, but sleep the whole night now. I took melatonin and some other natural sleep aids for a while and also took ambien a few nights when I just really couldn't sleep at all.
Posted by debilyn (Member # 35753) on :
Larae,
How long have you been taking rifampin?
Posted by Summer3 (Member # 35286) on :
I've been taking Rifampin for over 4 months. I take 600mg on an empty stomach early in the morning at like 3:00 a.m..
I only get red/orange urine once after that and it's at about 8 a.m. I herxed on it and then I really didn't notice anything happening after that for a few months. I wasn't really improving or getting worse.
Lately I've not been feeling well though, but I'm pretty sure it's not from Rifampin.
Posted by Kudzuslipper (Member # 31915) on :
Thank you all. I took it first thing this morning instead of at 11. Do you think I can take my other meds an hour later?
I found these two links interesting. 1rst Wikipedia.
I've been on Rifampin for almost 5 months now (woah that seems crazy).
I had a really hard time at first and now I have no idea if any of my issues are from bart or what? I have no idea.
Posted by Ellen101 (Member # 35432) on :
I could not tolerate rifampin at all. I was on it with minocycline. My pain levels were through the roof. My LLNP had me discontinue it.
Posted by amk33 (Member # 13206) on :
The same thing happened to me..red pee the first couple of days, now it's not as red, more of a tint of orange. I take it 1 hr before breakfast, and 1 hr before dinner. I was wondering about the absorption thing, too. On a grosser note, my poop is orange. Posted by Kudzuslipper (Member # 31915) on :
I think I am lucky in that I am doing it later in my treatment. Thankfully, I have not had the pain through the roof... That happened on my first combo of zythro and doxy.
So last two mornings took it 1.5-2 hours before breakfast. I also got clear capsules and am pouring the powder in a capsule instead of mixing with applesauce. Still no red pee.
But a little less buzzy as I went back to bed.
I am taking the Biaxin and amantidine 3-4 hours after. And then again before bed.
Editing to add...maybe not so lucky... Now feeling kind of freaky...racy, shaky, and weak. I am not visibly shaking but feel like I am trembling. I do not like this drug.
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