My daughter, bitten in July and treated since then with 300mg a day of doxy has been trying to add rifabutin.
Twice she tried. Both times the arthritis in the knees went away within a couple of days, and then came back a couple of days after stopping and worse than before.
She went off the Rifabutin both times she tried it after about 6 days because the stomach pains, nausea and overall weakness were so debilitating she couldn't even get out of bed.
Any thoughts? Anybody had a similar experience with Rifampin? I know not that many people have tried Rifabutin.
Thanks.
BTW-- the doc thinks she has bart in addition to Lyme, that's why the doc wants her on rifabutin.
Posted by timaca (Member # 6911) on :
Best, Timaca
Posted by marypart (Member # 27012) on :
Thanks Timaca. I know about Carter's work and think it may be very applicable to my son's case. He was positive for Lyme... 5 bands on the IgM but also positive for C. pneumonia and Klebsiella... all known triggers for arthritis.
But my daughter looks like a clear cut Lyme case... with the bullseye last July, and the knee arthritis starting within days.. even with the doxy.
What I don't get is how the rifabutin could dampen down the arthritis in the knees within days. Maybe it has an anti=inflammatory effect? And how is it that it comes roaring back and harder after stopping it. Remember,she was only on it for less than a week each time.
It's confusing. And it's such a weird thing for me to have two kids with Lyme treated by two different doctors with different protocols..
Thanks for any comments/ideas. I know rifabutin has not been used by many.
Mary
Posted by timaca (Member # 6911) on :
Mary~ I've been on rifampin 300 mg bid and doxy 100 mg bid for the last 6 months. My IgA antibody titers for Cpn have dropped from as high as the lab measures: >=1:256 to 1:32. IgG is still as high as the lab measures, but that will take some time to drop.
I am also battling various viruses.
This info may not be of help to you, but I found it fascinating that my IgA titers have dropped substantially due to the rifampin/doxy combo.
Best, Timaca
Posted by little_olive (Member # 28063) on :
First off, YOU CANNOT STOP AND START RIFAMPIN LIKE THIS. Absolutely not, the bugs will become resistant to it and it will stop working. Just twice is enough to cause this, any more is pushing it. You cannot, cannot do this.
Bartonella causes arthritis too! It replicates every 5-7 days depending on the strain. The coming and going of her symptoms may be from that, and of course it will be worse when the bugs come out on those days. When I first started Rifampin I couldn't walk for about two weeks from the weakness. I eventually had to get on 150 twice a day instead of 300 twice a day.
Also, recent research shows that Doxycycline DOUBLES the rate at which the Lyme bacteria turn into cysts. Rifampin supposedly treats the cyst form of Lyme, so that may be another reason why the arthritis gets so bad. Maybe tell your doctor about this recent finding and he may want to add Tindamax. Rifampin has NO activity against the regular form of Lyme. None. It does treat mycoplasma and CPN. Mycoplasma pneumonia and CPN can be almost identical to Lyme, also. Myco even causes bell's palsy just like Lyme.
Hope this helps somehow. Just please do not start and stop it, all the bart drugs run a very high rate of creating resistant bacteria with improper use.
Posted by bcb1200 (Member # 25745) on :
quote:Originally posted by little_olive: Also, recent research shows that Doxycycline DOUBLES the rate at which the Lyme bacteria turn into cysts. Rifampin supposedly treats the cyst form of Lyme, so that may be another reason why the arthritis gets so bad. Maybe tell your doctor about this recent finding and he may want to add Tindamax. Rifampin has NO activity against the regular form of Lyme. None. It does treat mycoplasma and CPN. Mycoplasma pneumonia and CPN can be almost identical to Lyme, also. Myco even causes bell's palsy just like Lyme.
Not true..sorry. Rifabutin and Rifampin both have action against Borrelia per Burrascano.
Also...a urge you to use caution regarding the new research re Doxy, tindamax, etc, as it was only done in vitro...in a petri dish and we don't know the behavior in the body. Often times it is much different.
Posted by little_olive (Member # 28063) on :
Hmm. I've found sources stating the complete opposite about Rifampin and Lyme disease, that it didn't have any activity against it. If you find something stating that it DOES work please message me or post it because I'd want to know.
And yes it was only invitro. Again, she should inform her doctor about it in case he wants to read up on it and weigh the options. It makes total sense to me because after 4 months of Doxy that's what my Lyme did--turn into cysts. I felt great, not knowing that they were just hiding out.
Posted by marypart (Member # 27012) on :
Thanks for all the info.
Just to be clear, she's not "starting and stopping."
The doctor wanted her to give it a second try. It just didn't work out. She can't take something that makes her stomach ache and she was so weak she was bedridden and sick to the point it feels like chemo. But it is interesting that the arthritis went away within 3 days of being on the rifabutin, both tries. But by the fifth day she was so sick she had to go off of it both tries.
Rifabutin. NOT Rifampin.
At any rate, the plan was going to be doxy, rifabutin and tindamax. So instead she's going to try doxy, levaquin and tindamax.
Hopefully it will work.
If her problem is the cyst form of lyme, maybe the tindamax will get to it?
I'm not sure what to think about the Cpn or Mycoplasm. Would they cause knee arthritis within a week of a tick bite and bullseye? It just seems so clearly like Lyme.
Thanks for the help. Mary
Posted by migs (Member # 16496) on :
I have taken RIFABUTIN extensively. It works very well for me. At one point last year, I think I was as smart as I was pre-Lyme...recalling phone numbers and appointments was easy for a while and I was getting a lot accomplished.
I take it 150mg twice a day with food and never have an issue. I take 100 billion units of probiotic about 2 hours after my meds.
Going on and off it is fine. It if often pulsed.
Posted by little_olive (Member # 28063) on :
Oh! I'm sorry, brainfog and I misread the Rifabutin! But since they are all in the Rifamycin group, I'd still be careful about the stopping and starting. I know Rifampin is like this, but I'm unsure of Rifabutin specifically. My LLMD says that if you make it past ten days the risk should decrease.
I completely understand the feeling of being on chemo. Some say force through it, but it can be dangerous. I ended up in the hospital five days taking Rifampin with Doxy--the herx was far too severe. Again, I had to half the dose of RIfampin to 150 twice a day. I've been on it ten months and it's really, really great.
I don't think anyone is disputing that she has Lyme, but the chances of JUST getting Lyme from a tick are low--just how she got bartonella from the tick as well, she could easily get any other number of infections. I wouldn't worry with it too much though since you're treating everything with this combination of drugs. Just things to be aware of in The Lyme Fight.
Posted by bcb1200 (Member # 25745) on :
quote:Originally posted by little_olive: If you find something stating that it DOES work please message me or post it because I'd want to know.
LittleOlive: See below from Dr. B's guidelines page 16
"RIFAMPIN is a well-known antibiotic that has been in use for many decades. It is primarily used to treat tuberculosis, but also has been used in other conditions, such as prevention of meningitis in those exposed, for treating resistant Staph, etc. Potentially, rifampin may be effective in treating Bartonella, Ehrlichia, Mycoplasma, and Borrelia."
Posted by little_olive (Member # 28063) on :
It does supposedly have activity against the cyst form of Lyme, though I've never found any supporting studies, I think because they simply haven't done them? Sometimes I wonder how that became such common knowledge amongst LLMDs? It's probably out there and i just haven't seen it. But studies on the efficacy of rifampin for treating regular form of Lyme HAVE been done and found it doesn't work. That's why I'm saying these things. If anyone wants they can start by searching pubmed.
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Just things to be aware of in The Lyme Fight.