Ok I did a search and was pretty scared to read peoples intense herx reactions to rifampin, my doc just ordered this for me, i never tested pos for bart, but i've been sick for 5 years now, and i guess he wants to give it a try. But i'm pretty scared now. I did try levaquin a couple of years back and had a huge herx and couldn't tolerate it, however always wanted to try again. Just wondering if all experiences are bad herxes? thanks
Posted by Hoosiers51 (Member # 15759) on :
I think some people can't tolerate it, and others it is just bad Herxes. I would say it is worth a try though.
If you think they are Herxes, maybe just ride through it.
I think sometimes people intuitively "know" when something is just not right vs. when it is a Herx.
I know some people say Rifampin was wonderful for them though, so you should try it!
Posted by bbinme? (Member # 4665) on :
Thanks Hoosiers, i think i just have to try, and suck it up, Damm this disease!
Posted by kylasrain (Member # 12031) on :
I start it as well next week. I tested pos. for Bart...
I start Rifampin, minocycline and plaquenil together next week.
I'm scared too:(
Posted by KauaiGoddess (Member # 11782) on :
Aloha~
you know what, Rifampin has been the BEST drug for me! I have made the most recovery with it far above any other drug...just finished some months on Levaquin which did not do much either way for me...
Rifampin herx for me was a few intense headaches (but only maybe 5, then they went away) and anxiety!
OVerall, I had improved energy almost immediately with mental clarity and better overall well being! my depression went away for the most part- except the Menstrual Blues!
Don't be scared of it....a lot of things you read are what other peoples bodies responded- we are all so individual in our make up!
I would take my 600mg on an empty stomach at 5 am and then go back to sleep (keep a cup of water by the bed, the night before)....I had no stomah issues what so ever....and Levaquin made me throw up, so I had to take it with food...and others can handle it...
I was nervous before taking rifampin too, but for no reason ...it was GREAT for me.... I am actually going back to its relative mycobutin soon!
if you need support or have more questions, feel free to pm me...
mahalos~ and hugs and smiles! Fawne
ps. I hope you can muster the strength to take it...if you can't handle you can always stop... sending you some strength and positive thoughts!
**also, when you put the pill in your mouth, set some intention with it, tell your body that this pill your giving it will help it get well...ask your body to accept it and use it to its utmost benefit!
Posted by Curiouser (Member # 14128) on :
To paraphrase and emphasize what KauaiGoddess said, how we respond to a med is highly individualized.
I didn't tolerate Levaquin at all. Couldn't keep it down longer than a half hour.
Don't have that problem at all with Rifampin. Some minor nausea the first few days (which is gone now), along with a strange taste in my mouth (that's still there).
As far as side effects go, that's not too bad.
Just started Rifampin last week. Didn't expect much since I tested negative 3 times for bart.
Much to my surprise, I had a herx from it. What's more, it was mostly a neuro herx. Well smack my butt and call me spanky! Looks like I have bart after all!
The herx was a bit intense for a few days (mostly facial nerve stuff) and I felt flu-y with it. Overall tho, it wasn't nearly as bad as I thought a bart herx would/could be.
Now that the herx is over I'm feeling a bit better in general. It's also nice to have confirmation of the clinical diagnosis.
Several people I've "talked" to have said it was their miracle drug and did them a lot of good. Maybe try to focus on that, rather than the potential downside.
Guess my point here is don't be afraid. You could be one of those who have a relatively mild herx or no herx at all and still benefit from Rifampin.
Please keep us posted. Posted by bbinme? (Member # 4665) on :
Kylarain, thanks for your response, hopefully we will be the ones who don't herx too bad and have good results with rifampin, i just gotta think positive.
Kauaigoddess, thank you for your positve reply, it's great to know that it works really well for a lot of people i've talked to, it gives me a lot of hope. And it hepls to know i'm not alone! Deanne
Curiouser, thank you too for your positive response, again i feel empowered by them! I also tested neg for bart, but wonder if i have it. Did you have a lot of neuro symptoms before taking rifampin. I have had issues with neuro symptoms in the past, but not for a awile now, like anxiety attacks, severe mood swings and lyme rage, depression, did you have these? And you said that rifampin caused a neuro herx, and because of that you knew you had bart after all, does bart die off generally cause a herx? And how do you know a neuro herx with rifampin is diagnostic of bart? Just trying to understand everything, i'm so confused about the whole thing really. Thanks for any help, Deanne Posted by disturbedme (Member # 12346) on :
I tested positive for Bart and was put on Rifampin. I really did not herx on this, but made slow improvements. It was the drug that got me up to 70%.
There's only one way to get better and it's THROUGH. You have to take the medicine if you want to get better even if it does mean herxing and feeling worse for a time.
Posted by JasonK (Member # 14071) on :
I agree with disturbed me,
I have taken Levaquin and Rifampin for some time now herxed bad at the start but take it now and very rarely have any bad experiences.
Just go thru the pain you will come out the other end better i am not fully cured but things are much better these days.
Posted by Curiouser (Member # 14128) on :
Deanne, I really don't know if bart die-off always causes a herx.
The reason I'm pretty sure it was a bart herx, as opposed to a lyme herx or flare, is because the Rifampin was the only new med I'd started.
If I'm going to herx at all on a med, it's usually in the first 4 days after starting it. Everyone's different in this regard. It just happens to be a pattern I've noticed in my own treatment.
A lot of my symptoms are neuro. I have all the emotional ones you mentioned to varying degrees.
Also have tremors, facial numbness/pain, sensory hallucinations, parasthesias, all the fun that goes along with brain fog, and a slew of other stuff.
I also have muscle cramping in my legs and shin splints. While still there, both have gotten slightly better since the herx.
I have noticed a recent increase in fatigue and depression, but then I just added Valtrex and Mepron two days ago. Those might be responsible for that.
If it makes you feel any better, I had a lot of anxiety about starting the Mepron. Started it anyway. There's no point fearing what might be. Just gotta deal with what's happening now.
A lot of this is a guessing game about what causes what. I don't have any set answers. Just a few clues that might point in the right direction as far as my own symptoms, treatment, and response are concerned.
Posted by katiegirl625 (Member # 16776) on :
I am on 300 MP of Rifampin I take before bed and I have had no horrible side effects besides the fact my body is killing me! But other then that nothing new!
Posted by METALLlC BLUE (Member # 6628) on :
Don't forget to take blood testing seriously for Liver Enzymes.
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sending you some strength and positive thoughts!![[Wink]](wink.gif)
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