Rifabutin herx

Hi everyone,

So I've been trying to recover back to baseline from what I believe is a herx to rifabutin since mid November. This latest herx is so intense and doesn't seem like it wants to go away (I've already been hospitalized once a couple weeks ago) and when I tried to slowly reintroduce it this past week, I'm back to feeling terrible again since Friday night. My symptoms haven't just worsened but I feel like how I felt when I was at my worst point at times in the beginning of my illness. Also, I sometimes get a dull stabbing pain in my right side/back which I think may be liver pain? Along with that, my bloodwork is showing some strange markers as immature WBC's are being shown in my peripheral blood (which I guess is not normal). My LLMD is telling me the immature WBCs are just evidence that my body is fighting a bacterial infection (phenomena called "left shift") although she certainly doesn't see that too often and there is a small chance it can be something else but most likely just due to the herx.

This is all alarming to me and anxiety is through the roof right now... I feel super fatigued, constantly flu-like feverish, chills, malaise, body aches, lack of appetite, chills on and off, sometimes air hunger, straight up misery. Last couple days there were so many times I was going to take myself into the ER again but somehow managed to bear through it.

Trying to make sense of it all...honestly, I was making some good progress and in switching to rifabutin to rifampin my doc told me I will herx a little bit more and then get much better...but I haven't found that to be the case so far. She told me to take a break from all my abx at the moment as she thinks my system is overtaxed.

Since my anxiety is through the roof right now in response to how terrible I'm feeling, my mind has been to many dark places and doubting a lot of my progress I have made thus far...I guess I am looking for some affirmation and hope here that I am still on track (my doctor says I still am) and that this is just only a minor setback.

I know that quite of few of you guys have done rifabutin for bart... how have your experiences been with it? How do you know when is enough?

The first time I tried rifabutin, I took it once every 3 days for about 1.5 weeks before landing in the ER and took a week break than retook it once every 3 days WITH rifampin in the days between and about 1 week after I am starting to feel very terrible again.

Is this a sign that my body cannot tolerate rifabutin? Or should I just be taking it EVEN slower?

I still believe I am going to get better and have so many people around me supporting me. This is such a tough disease to navigate and I'm glad to have all your guys' help as well. Any advice would be appreciated!

I was fortunate I guess, i did 7 months of daily rifabutin. i tolerated it well the whole time. near the end then my thyroid levels were elevating.

i am not one to herx strongly. near the end i was starting to feel "medicated", almost like the feeling of taking nyquill or cough medicine for a few days. i think it was more of an effect of the medication rather than any herx.

Dang - I guess I should be getting my vit D and thyroid tested again.

Does it resolve once you stop taking the Rifabutin?

sierraDon said...


I am not sure how quickly it resolves. I have heard people say that elevated thyroid issues resolve after rifabutin treatment, per Dr M. I am not sure about adrenal or vitamin deficiencies.

i know from my issue, my TSH dropped back to normal/optimal range after 1 week of discontinuing rifabutin. my antibodies i need to retest, those were within normal range, but not optimal range. that was while taking rifabutin, i didnt retest those yet. my FT3:RT3 ration is good. i will retest vitamin D deficiency in the new year, i have been supplementing on that.

i think in that one townshend letter article about Dr M, he describes adrenal crisis and rifabutin. xpeetax should look into that article, it sounds like what is going since it was such an acute reaction.

Thanks Sierradon. I am aware of this. I have been taking hydrocortisone and liothyronine (t3) supplements ever since I started abx back in late July along with vitamin D/K supplementation. So I'm not sure if it's adrenal crisis...unless I'm taking too small a dosage? The symptoms are very acute/flu-like symptoms as well so I'm just thinking the herx is just acting up or recently I've been thinking I may have caught a cold/flu on top of my bart...is that possible?

I'm currently on a break from all my abx for 3 days now and I still feel pretty crummy/flu-like....especially at night.. So I've been thinking that recently.. have anyone had any similar experiences?