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joee
Regular Member


Date Joined Dec 2011
Total Posts : 153
   Posted 1/2/2018 4:18 PM (GMT -7)   
I was wondering if anyone has had any experience with rifabutin.

I am not sure if what is happening is a herx or reaction to it or both.

I started with it on christmas day and took it mon/wed/fri that week. On the first day within an hour I felt flu-ish so I figured I was herxing. By that night, every inch of my body was in pain. On tuesday, my off day, I was still having symptoms of what I believe to be a herx (body pain, chills, nausea), but a new symptom, body trembling which was very severe. That evening I got a severe headache.

The headache was in my right eye, and up into my skull on the right side. Like a hot poker. The back of my head was also hurting severely.

I am also getting pain in the area of my liver, on my back and under the right ribs, which I had for years but had resolved until I started the rifabutin.

I Continued with the headache and the herxing feelings until Sunday, where I started to get some amount of relief.

Yesterday (monday), I started the meds for this protocol again including the rifabutin, and again, got all the same symptoms, including the headache and pain in eye.

I had my bloodwork done today and I have myself convinced that it will not be pretty where my liver is concerned but I will need to just wait and see. It will probably take a week to get the results back.

I know if I try and call the dr office it will take them a week to respond to me, so I was reaching out to see if anyone else gets anything like this headache.

I have been detoxing like crazy, taking ibuprofen for the head pain, and using the cocktail of meds I was given for the swelling brain but not of it is helping this headache.

I keep trying to tell myself that it is all just bart and to ride it out. A lot of my remaining symptoms were all in my head area. Nerve pain in my face, and teeth and I guess headaches too, and I also get blisters on the roof of my mouth on the first week of each protocol. My throat has been sore and I have what I have read are crimson crescents (red inflamed areas) in front of my tonsils on each side. I get pain in my teeth that moves around. I have been to the dentist and I get told teeth are great so I wait it out. I still have the tachycardia and shortness of breath but my practitioner feels I have beat babesia and this is from autonomic nerve problems, may or may not resolve with treatment.

I am hoping that if I am patient with the rifabutin that it will get all my head symptoms which seem to be flaring while on the rifabutin.

On a side note - One other lovely side effect or herx of rifabutin is anxiety and its friend insomnia. Severe anxiety, which I had beat. It was gone, but now it is back with a vengence. Lovely!!

Anyone have any opinions on this?

I have spent the last 8 days in bed (not sleeping unfortunately-just too much pain to move), ugh, I thought I was past this part as I would herx sporadically and never this severe in the last year of treatment.

So for me 2017 ended ugly and sadly, 2018 is not looking much better. Which has me bummed because for years I woke up each day and said to myself tomorrow, tomorrow you will be better. Then each new year I would tell myself, this is the year you will be well, forever the optimist. I thought the same thing this past december...2018 you will be well. Only to have this new year start off so darn ugly. Gah!! (ok so this part is just the anxiety talking and she is being really, really negative-hahah)

So sorry for the long post....opinions on if this headache is just bart herx or the rifabutin side effect or maybe just rifabutin-girl you just gotta deal with the headache till your done this protocol thing. At this point i am clueless.

sunny40
Regular Member


Date Joined Mar 2016
Total Posts : 85
   Posted 1/2/2018 4:50 PM (GMT -7)   
If you are unsure as to whether these symptoms are a herx or not, or even if they are quite bothersome, which it sounds like they are, speak to your doctor.

Those of us that have been dealing with these infections a while tend to power through severe herxes and side effects and its not always beneficial to do so.

I had a rough time with Rifabutin and had to stop after 3 weeks and this rarely happens to me with medications. It has a lot of side effects and seems to pack quite a punch.

I did fine with Rifampin. Maybe Rifampin would be a better option for you.

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 28710
   Posted 1/2/2018 8:25 PM (GMT -7)   
joee - I haven't taken rifabutin before - just Rifampin.

Have you taken Rifampin before or is this your first run at treating Bart?




I am surprised to hear that the shortness of breath and tachycardia could possibly be permanent nerve damage. (I also have some autonomic neve issues)

Keep us posted!


Sending you hugs and hoping you have better days this week.
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

Rikky1
Veteran Member


Date Joined Jun 2015
Total Posts : 2654
   Posted 1/2/2018 9:41 PM (GMT -7)   
i'm currently on rifabutin and have taken it in the past for months at a time. Dr. J in DC prefers this over rifampin since its half life is a lot longer so works in the body longer (~45 hours) and it also has superior tissue penetration so gets into more places.

the rifamycin class of drugs are very potent and have strong action against gram negative pathogens like bartonella and brucella, hits persister cells and is a strong biofilm buster so when you take this drug you are hitting things from multiple fronts.

your response to this medication sounds like herxing to me as i've heard too many stories of folks who first start this medication and get whacked hard. heck it put me in the ER when i first started it thought i was having a heart attack but it ended up being horrible nerve pain in the chest and other areas.

definitely worth sharing your experiences with your doctor they may switch you or lower the dosage/spread out the pulsing more to help you cope.

let us know what they say.

joee
Regular Member


Date Joined Dec 2011
Total Posts : 153
   Posted 1/6/2018 5:24 PM (GMT -7)   
Thank you all for your comments.

Sorry it took me so long to respond, it has been a hellish week. Honestly, I have herxed so bad and continuously for so long when all this started but this is on another level.

Girlie,
I am not sure if they were targeting bart before as I have been on the usual antibiotics, but this is the first time I have taken rifabutin.

Rikky,
I am still unsure if this is in fact a herx or a side effect. This is really insane how it hit me.

I will make a call in to my dr on monday. I am not sure if I can go on with this med. I have my concerns it is some toxic reaction. I got my blood work back late friday and it stated that my absolute lymphocytes is 200. range is 3000-9000. So that has me very concerned. Since a side effect of this drug is low lymphocytes and all my symptoms match up with that and the side effect listed as "flu-like syndrome", I will put a call in just to be sure. I took my last dose of this two week period last night and still trying to feel somewhat normal. Just feels like the worst flu I have ever had with fever and so much body pain, with weakness and dizziness. ugh. My test came back late in the day so I am sure the dr office did not have time to get the results and get to me. I hope they contact me on monday so I don't have to do the waiting for them to get back to me after I call.

I received tickets for christmas to go to a professional hockey game. The game is tomorrow, but with my lymphocytes so low, I am afraid of infection or catching something from someone out there in the public, so I may have to miss that. Oh so much fun to be a germaphobe with low lymphocytes. hahahah

Again, sorry for not responding right away to all of you who took the time to comment for me. I appreciate all of you here and your wisdom. Hopefully, I can figure out what is going on with this drug and decide if it is safe to continue or move on to some other treatment. I have 2 weeks before the next round starts and I will really try to build my immune system back up and build up my strength.

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 28710
   Posted 1/6/2018 6:09 PM (GMT -7)   
joee- I'm sorry that you're still dealing with this...It's so difficult to know - if it's a herx reaction...or if it's something to be concerned about.


What is your total WBC count? I think if the total is good...then you're alright in public, right?

If you can't take the Rifabutin, there's still the rifampin option...and it may be easier to tolerate.


How about a face mask for the hockey game? (Not that I would do that...lol) It would be a shame to have to miss it. (If you're like me...you're fed up at this point about missing events...)

Hopefully over the two weeks you will feel better again...and you will also be able to discuss this with your PA.
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

Rikky1
Veteran Member


Date Joined Jun 2015
Total Posts : 2654
   Posted 1/6/2018 8:35 PM (GMT -7)   
joee that sounds like a herx from hell to me i've heard that happening to several folks when they first started this medicine. as i said its very potent.

in any event your doctor will probably switch you out and onto something milder since this is kicking your butt so hard.

let us know how you're feeling and what are your next steps no hurry.
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