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joee
Regular Member


Date Joined Dec 2011
Total Posts : 180
   Posted 1/2/2018 6:18 PM (GMT -6)   
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 : 92
   Posted 1/2/2018 6:50 PM (GMT -6)   
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 : 33939
   Posted 1/2/2018 10:25 PM (GMT -6)   
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 : 2924
   Posted 1/2/2018 11:41 PM (GMT -6)   
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 : 180
   Posted 1/6/2018 7:24 PM (GMT -6)   
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 : 33939
   Posted 1/6/2018 8:09 PM (GMT -6)   
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 : 2924
   Posted 1/6/2018 10:35 PM (GMT -6)   
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.

HealMe123
New Member


Date Joined Feb 2018
Total Posts : 10
   Posted 2/21/2018 7:34 PM (GMT -6)   
joee - would be curious to know how you're doing now! I started rifabutin last week...having some pretty strong reactions to it...I'm hoping it's die-off and not side-effects/toxicity of the drug. I didn't bode well with Rifampin 2 years ago - my doctor said this one is generally better tolerated even though it's in the same class of antibiotics. Hope you're doing better than before!

OriolCarol
Veteran Member


Date Joined Dec 2017
Total Posts : 730
   Posted 2/22/2018 8:18 AM (GMT -6)   
I have exactlly the same issues with rifabutin...

OriolCarol
Veteran Member


Date Joined Dec 2017
Total Posts : 730
   Posted 2/22/2018 8:23 AM (GMT -6)   
In the first dose, I went straight to the emergency room, I had paresthesias all over my face, cramped in my arm, loss of strength in the legs ... I do not know if it is a herx or a toxic reaction, although honestly it seems that all we have herx because rifabutin is an antibiotic that is given to people with HIV, and I do not think it is so dangerous ...

HealMe123
New Member


Date Joined Feb 2018
Total Posts : 10
   Posted 2/22/2018 9:17 AM (GMT -6)   
OriolCarol, I am so sorry you had that experience. That must have been terrifying. I am really hoping that we are herxing and not having drug toxicity, too! Are you going to continue with it, OriolCarol?

Since starting it, I have had new symptoms arise - the pins and needles have spread from a few distinct areas to my full body (including brain!). Never had the feeling of pins and needles in my brain before - I’ve also felt way more hopeless/depressed/anxious since starting the rifabutin. Since these all seem like Bart symptoms, I’m hoping this means that Bart is dying! The fatigue and joint pain have increased dramatically, too - and the abdominal distetion....no fun!

OriolCarol
Veteran Member


Date Joined Dec 2017
Total Posts : 730
   Posted 2/22/2018 10:05 AM (GMT -6)   
You are describing exactly the same symptoms that I am having. I will continue, I want to risk...

I have severe ramps in my calve, legs... and abdominal distetion!

HealMe123
New Member


Date Joined Feb 2018
Total Posts : 10
   Posted 2/22/2018 11:44 AM (GMT -6)   
OriolCarol - yes, the abdominal distention is so bad!! I am going to continue for now, too...How long have you been taking it? Today is the 7th day for me...And are you taking anything else with it? I'm also on Dapsone.

OriolCarol
Veteran Member


Date Joined Dec 2017
Total Posts : 730
   Posted 2/22/2018 1:19 PM (GMT -6)   
Now is the 7th day om rifabutin. I feel so miserable... it's hitting me so hard. I'm taking mino with that.

HealMe123
New Member


Date Joined Feb 2018
Total Posts : 10
   Posted 2/22/2018 5:45 PM (GMT -6)   
I'm miserable too - Honestly, it helps to know that there is someone else out there on the same drug (and that started the same day!) as me - so I'm really glad you responded...even though I'm not really glad you're also struggling right now...

insomniaaa
Regular Member


Date Joined Apr 2017
Total Posts : 174
   Posted 2/22/2018 5:50 PM (GMT -6)   
Are you guys pulsing the rifabutin and the minocycline ?
What side effects are you getting from the minocycline?

HealMe123
New Member


Date Joined Feb 2018
Total Posts : 10
   Posted 2/22/2018 6:00 PM (GMT -6)   
I'm on rifabutin everyday...The dapsone is 5 days a week for me...

joee
Regular Member


Date Joined Dec 2011
Total Posts : 180
   Posted 2/22/2018 6:52 PM (GMT -6)   
Hey guys,

Just an update on the rifabutin drama.

I pulse this drug m/w/f for two weeks then two weeks off.

So I called my dr and she said it sounded like a bit of reaction to the drug and also a huge bart load that I am dealing with so it was mostly a bad herx.

She asked that the next two week treatment period that I just take it once a day as opposed to 2 times a day, m/w/f.

I did that for the first week and did much better so the next week I added the two times a day on monday and did okay, then wed and did okay so I added two on friday and herxed badly.

The next round of treatment I was to do full dosage and I did really okay, little herxes but nothing that stopped my day until the second week on friday night. The herx was just awful, with all the bad symptoms and fever along with it. It took 2 days to detox it out.

But, I am now on yet another round and doing okay.

So, for me it was mostly a huge bart load I had to deal with. There is still some herxing but nothing like I was doing.

In fact, yesterday, which was a treatment day, was the best day I have had in 9 years. I felt 100%. It
might have helped that it was 77 lovely degrees here which is just crazy for february, but my body was loving it. Today, I am a bit more run down and tired with some herxing, but I also take tindamax today, so it is usually a hard day for me.

So for me, the bart load was large and I just needed to slow down the kill to get the load down, and then get back to it. The plan worked! Yay, for successes in this nightmare, right?

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 33939
   Posted 2/22/2018 7:05 PM (GMT -6)   
joee - this is good news!

I'm glad you're feeling better and able to tolerate the full dose again.


Do you generally feel better on your off weeks...than you're 'on medication' weeks?

I'm not having that pattern.



So you never did do Rifampin - just the Rifabutin?
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

WalkingbyFaith
Veteran Member


Date Joined Aug 2017
Total Posts : 2040
   Posted 2/22/2018 7:49 PM (GMT -6)   
joee said...
Hey guys,

Just an update on the rifabutin drama.

I pulse this drug m/w/f for two weeks then two weeks off.

So I called my dr and she said it sounded like a bit of reaction to the drug and also a huge bart load that I am dealing with so it was mostly a bad herx.

She asked that the next two week treatment period that I just take it once a day as opposed to 2 times a day, m/w/f.

I did that for the first week and did much better so the next week I added the two times a day on monday and did okay, then wed and did okay so I added two on friday and herxed badly.

The next round of treatment I was to do full dosage and I did really okay, little herxes but nothing that stopped my day until the second week on friday night. The herx was just awful, with all the bad symptoms and fever along with it. It took 2 days to detox it out.

But, I am now on yet another round and doing okay.

So, for me it was mostly a huge bart load I had to deal with. There is still some herxing but nothing like I was doing.

In fact, yesterday, which was a treatment day, was the best day I have had in 9 years. I felt 100%. It
might have helped that it was 77 lovely degrees here which is just crazy for february, but my body was loving it. Today, I am a bit more run down and tired with some herxing, but I also take tindamax today, so it is usually a hard day for me.

So for me, the bart load was large and I just needed to slow down the kill to get the load down, and then get back to it. The plan worked! Yay, for successes in this nightmare, right?


Jose,

That's great news!!! I'm so happy for you.

I've been reading this post with interest, as I'm treating bartonella with herbs and have had the worst herx/flare yet over the past few weeks. I was comparing your herx symptoms to mine. Mine have been similar but not as severe. I feel like I'm getting closer to a breakthrough with the Bart. I'm hopeful at least.

joee
Regular Member


Date Joined Dec 2011
Total Posts : 180
   Posted 2/22/2018 8:42 PM (GMT -6)   
Girlie,

I have never taken rifampin. They wanted to try the rifabutin first if my insurance would pay for it, because she said it is easier on the nervous system than the rifampin (side effect). Rifabutin hits my nervous system hard as a side effect so I don't know if I could have done the rifampin anyway. Luckily the insurance didn't balk at it at all.

At this point my weeks feel the same, on or off antibiotics as long as I am not herxing while on. I do notice that as I approach the end of the off week nerve issue come back. Nerve pain in teeth and pain in feet, although I think that is bart and not necessarily nerves....not sure what causes what at this point.

Insomniaa,
I do pulse the rifabutin. 3 days a week for two weeks then time off, two weeks off, I am going into a 3 week off cycle soon. I don't get any side effects from the mino. The first time I went on it, over a year ago, I brain herxed horrifically. The dr told me that was to be expected. I had no clue so out of no where these awful brain symptoms just shocked me...had I known I could have prepared mentally. I learned to really rely on the pinella to help that. I didn't know about pinella at that time. I take mino now with minimal brain herx. At this point, just an increase in word loss, or mixing up words, trouble finding what I want to say, but very minimal now. No more being crazy upset and crying over who knows what.

Walkingbyfaith,

Things have finally started to feel that I may actually have turned a huge corner. Hang in there, In my opinion, at least for me, the rifabutin has made huge changes for me. It was rough but worth it I guess. i hope you make progress too on your protocol!

If I continue to do well and keep beating the symptoms, I should be going on maintenance treatment starting the beginning of may. Yaaayyy!! Fingers crossed. And fingers crossed for everyone here who is battling bart! May we kill this bugger deaddddd!!!!

HealMe123
New Member


Date Joined Feb 2018
Total Posts : 10
   Posted 2/23/2018 11:23 PM (GMT -6)   
Joee,
Thanks for the update!! That’s the most hopeful thing I’ve seen all week...
It is amazing to hear that you seem to have turned a corner! May I ask how many weeks it took for you to notice that rifabutin was helping you? Fingers crossed that you will be able to get on a maintenance protocol in may!

joee
Regular Member


Date Joined Dec 2011
Total Posts : 180
   Posted 2/24/2018 12:29 AM (GMT -6)   
Healme,

The first 2 weeks were dreadful. Then I had 2 weeks off. I needed the full 2 weeks to recover from the bad herxing. I started back up for another 2 weeks on a reduced dose and did okay. Then during the next 2 week break I noticed I was doing better. At the end I started some symptoms back. I'm on the next cycle now, 3rd, and had the best day this past week. Tonight not so much. Herxing big-time. But this drug I feel better after I recover from each herx. I never had that before. So I think I had a bart issue that was my biggest problem so I notice so much change as soon as I detox out a large herx. I hope that makes sense cause it really isn't so clear cut in how I feel. I still have bad days but since the first 2 weeks on then 2 weeks off I have noticed I have more better days than bad...meaning on my off weeks.

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 33939
   Posted 2/24/2018 12:57 AM (GMT -6)   
Joee - I hope you continue to improve on this protocol. You must be so happy!

- Did you treat Babesia for many months prior to this new protocol?

So far I’ve not had clear patterns - of herxing and then feeling improved.
I’m starting Babs treatment on Monday (again ) but I do think I still have Bart lingering..and the plan is for me to target Bart with Cipro in a few months but I am freaked out with that drug so I am going to ask for Rifabutin and hope they are fine with that.
Do you know if Rifabutin is harder on the liver than Rifampin ?

It seems like more drs prescribe Rifampin - I wonder if it’s because of insurance coverage?
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

joee
Regular Member


Date Joined Dec 2011
Total Posts : 180
   Posted 2/24/2018 1:50 AM (GMT -6)   
Girlie,
Yes I did treat baba. Twice. The first time with a llmd who referred me to Dr j before I finished the babs treatment. 3 months. Then I had a few months before I started again. Treated the second time about 9 months.

I'm done with babs. It's gone. Yay.

I wasn't put on cipro because I was having pain in my Achilles tendon. I had it looked at by my orthopedist who said it was at high risk for rupture. Because of that risk we didn't do the cipro...too risky with my tendon situation.

Kl said rifabutin is often not covered by insurance but she wanted to see if my insurance would pay for it cause she said it's not as hard on the nerves as side effects go. My insurance pays for everything medicine wise so I got rifabutin no problem. But...fights me tooth and nail for every drop of life saving insulin I need. Go figure.

My liver enzymes got high for awhile before I started rifabutin and started to go down after I started it. The enzymes are normal now. I thought maybe cause bart itself is hard on the liver but I don't know where I heard that and if it is even true. But I thought maybe if it is true that the rifabutin is knocking bart down.
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