Kudzuslipper
Frequent Contributor (1K+ posts)
Member # 31915
posted
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.
Posts: 1728 | From USA | Registered: May 2011
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surprise
Frequent Contributor (1K+ posts)
Member # 34987
posted
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.
-------------------- Lyme positive PCR blood, and positive Bartonella henselae Igenex, 2011. low positive Fry biofilm test, 2012. Update 7/16- After extensive treatments, doing okay! Posts: 2518 | From USA | Registered: Nov 2011
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Marz
Frequent Contributor (1K+ posts)
Member # 3446
posted
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.
Posts: 1297 | From USA | Registered: Dec 2002
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Marz
Frequent Contributor (1K+ posts)
Member # 3446
posted
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.
Posts: 1297 | From USA | Registered: Dec 2002
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surprise
Frequent Contributor (1K+ posts)
Member # 34987
posted
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.
-------------------- Lyme positive PCR blood, and positive Bartonella henselae Igenex, 2011. low positive Fry biofilm test, 2012. Update 7/16- After extensive treatments, doing okay! Posts: 2518 | From USA | Registered: Nov 2011
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posted
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.
Posts: 331 | From West Coast | Registered: Jan 2012
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canefan17
Frequent Contributor (5K+ posts)
Member # 22149
posted
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 ^^^
Posts: 5394 | From Houston, Tx | Registered: Aug 2009
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Kudzuslipper
Frequent Contributor (1K+ posts)
Member # 31915
posted
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)
Posts: 1728 | From USA | Registered: May 2011
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ktkdommer
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Member # 29020
posted
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.
-------------------- Things are never dull. After 3 fighting Lyme, 2 are in remission. Youngest is still sick, age 22. He has new diagnosed Chiari Malformation and Ehlers Danlos Syndrome. Posts: 1366 | From Perrysburg, Ohio | Registered: Nov 2010
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posted
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.
-------------------- Treating lyme, bart and babs Posts: 506 | From NE | Registered: Dec 2011
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How long have you been taking rifampin?
Posts: 331 | From West Coast | Registered: Jan 2012
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Summer3
Frequent Contributor (1K+ posts)
Member # 35286
posted
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
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.
-------------------- Treating lyme, bart and babs Posts: 506 | From NE | Registered: Dec 2011
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Ellen101
Frequent Contributor (1K+ posts)
Member # 35432
posted
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.
Posts: 1748 | From United States | Registered: Dec 2011
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posted
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.
Posts: 418 | From NJ | Registered: Sep 2007
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Kudzuslipper
Frequent Contributor (1K+ posts)
Member # 31915
posted
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.
[ 10-14-2012, 03:28 PM: Message edited by: Kudzuslipper ]
Posts: 1728 | From USA | Registered: May 2011
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