Jamers
Frequent Contributor (1K+ posts)
Member # 28016
posted
So, I am very sensitive to meds and have heard lots of crazy herx stories from Rifampin. Unfortunately my doctor thinks Im crazy for starting all my meds off at half the normal lyme dose but I always do and it helps.
I got 150mg pills of Rifampin instead of 300 so i could start low. Im worried that even that dose may be too high (from what I've read) Rifampin pamphlet states that they medicine can be mixed into something instead of taken in pill form. So Im wondering if I can start off at 75 mg by opening the pill and only taking half of it.
anyone do this or have a better tolerance starting low? Thank you
-------------------- Diagnosed Pos. Lyme Nov. 17, 2010, Igx. Pos. Babesia Duncani March 2011, Igx. Clinical diagnosis for Bartonella Posts: 1127 | From North Carolina | Registered: Sep 2010
| IP: Logged |
posted
My LLMD wanted me to do 600mg at a time. I started off thst way and was miserable with dizziness and nausea.
I backed off to half a dose for about a week and then ramped up to a full dose. I had no more problems and could eventually even take it on an empty stomach like they say to.
I say if it works for you, go ahead and take half a capsule at a time in applesauce or yogurt.
Sometimes you have to do what works for you.
Posts: 303 | From Pennsylvania | Registered: Jul 2010
| IP: Logged |
posted
I would say definitely do not do it. 1) rifampin always has to be taken with some other antibiotic otherwise resistance is developing very quickly- during days 2) the same problem is with low dose, it is necessary to take full dose (at least 2x150mg) or not to take rifampin at all
some atb can be started and increased very slowly, e.g. azi, but definitely not rifa you can start with 300mg daily and then increase to 600mg like starfall did
Posts: 125 | From eu | Registered: Dec 2010
| IP: Logged |
posted
I understand you wanting to do it as I'm the same way, but I wouldn't do it. I started on Rifampin at 300mg like my doctor wanted me to and I was very surprised at how well I took it.
-------------------- Lyme918 Posts: 188 | From Massachusetts | Registered: Dec 2010
| IP: Logged |
posted
Me too, I was very scared from what I read, but reality was much more acceptable..so far after some initial discomfort it has been finally my best tolerated atb.
Posts: 125 | From eu | Registered: Dec 2010
| IP: Logged |
Jamers
Frequent Contributor (1K+ posts)
Member # 28016
posted
Thank you! I am very scared from these antibiotic horror stories also. I hope I tolerate it as well as you guys!
-------------------- Diagnosed Pos. Lyme Nov. 17, 2010, Igx. Pos. Babesia Duncani March 2011, Igx. Clinical diagnosis for Bartonella Posts: 1127 | From North Carolina | Registered: Sep 2010
| IP: Logged |
Jamers
Frequent Contributor (1K+ posts)
Member # 28016
posted
Lyme918-Did you start at 300mg a day? Or 300mg 2xday? Did you take once a day or twice?
-------------------- Diagnosed Pos. Lyme Nov. 17, 2010, Igx. Pos. Babesia Duncani March 2011, Igx. Clinical diagnosis for Bartonella Posts: 1127 | From North Carolina | Registered: Sep 2010
| IP: Logged |
posted
Hubby's LLMD had him start at 50 mg -- I split the 150 mg pills into 3 capsules. He increased his dose by 50 or 75 mg every 3 or 4 weeks. It took 8 months to get to the suggested dose of 600 mg. And then he crashed after 1 month at that dose -- had been ramping up 5 different antibiotics for the entire 8 months. Started with 1 antibiotic and addded a 2nd etc and increased doses on all gradually. The combo of meds was supposed to treat lyme, bart and babs.
Before this he had only ever been able to tolerate 1 antibiotic at a time without causing increased seizure-like spells and other severe neuro symptoms. But now he can take combos of multiple antibiotics much easier. Still starts only 1 new thing at once and usually at 1/4 or maybe 1/2 dose.
Hubby eventually ended up using 900 mg of rifampin with factive to beat bart or BLO or mycoplasma or haemobartonalla or whatever the mystery pathogen was that was seen multiple times on both F lab and Clongen bloodslides.
The bloodslides came back clean in December 2010 and his seizure-like spells and Parkinsonian tremors that he had had for the first 9 plus years of his illness are virtually gone.
After treating the bart he was able to do IV rocephin and IV zithromax will few problems. Back in 2003 when he tried IV rocephin I had to stop almost every single IV to give him IV ativan at least once.
And now we are finally going after the babesia aggressively and the big surprise was the recent positive blood test for rocky mountain spotted fever. In my opinion the bartonella or whatever it was had previously suppressed hubby's immune system so he was not running fevers so no one had even tested him for RMSF. But he has had high fevers and a rash both this spring.
Hubby had taken maybe a total of 20 rifampin pills back in 2005 I think in a period of 20 days. At that time he did not think he would ever be able to take the med. It did wake up his brain but also caused high anxiety and insomnia back then.
I personally think that the risk of developing resistance is not as great as some people think. It is more important to take the med consistently even at a low dose than to take high doses which cause one to stop taking it in my opinion.
During the 2 1/2 years hubby treated bart he stopped rifampin for several months in the middle and then was able to resume taking it at 300 mg for a couple of weeks before increasing to 600 mg.
One of the main problems with rifampin is that it interacts with lots of other meds. Make sure to take milk thistle and monitor liver enzymes.
This is not medical advice, just my opinion based on hubby's experiences.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
| IP: Logged |
posted
Jamers- I started at 300mg 2x a day. I had trouble tolerating every other medication I had been on, so naturally I was scared to start on Rifampin at that dose.
Thankfully, I tolerated it really well! I hope you're able to, as well.
-------------------- Lyme918 Posts: 188 | From Massachusetts | Registered: Dec 2010
| IP: Logged |
Jamers
Frequent Contributor (1K+ posts)
Member # 28016
posted
Bea-Thank you for a very informative post! I have difficulty taking more than one drug also. I can tolerate a med just fine and then get a side effect and have to stop. I am starting it tomorrow at 75mg I think, just to be sure Im not allergic or anything. I am only on Augmentin right now, as its all I can tolerate. I have heard of people taking Doxy or Flagyl with it so Im not worried about resistance without having a macrolide or something mixed in either.
Lyme918-I hope I have your good luck with it also!! Fingers crossed
-------------------- Diagnosed Pos. Lyme Nov. 17, 2010, Igx. Pos. Babesia Duncani March 2011, Igx. Clinical diagnosis for Bartonella Posts: 1127 | From North Carolina | Registered: Sep 2010
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[Smile]](smile.gif)
Printer-friendly view of this topic