I would love to hear your experiences with rifampin or bart treatment in general. How long did it take to help your psych symptoms?
I am seeing wonderful improvement with one of my 5 year old twin boys on it...his anger and rages are melting away before my eyes. I am so very, very happy about this. He did get worse before he got better, but by about 4 to 5 weeks, we started seeing improvement. And even in the first week, his physical symptoms (muscle pains) disappeared, so at least I knew the drug was working.
With my other twin, the OCD behaviors (clapping between doing things), rough and aggressive behavior, manic and disrespectful behavior is just getting worse. His preschool teachers just mentioned his manic and disrespectful behavior today.
I am starting to be afraid to take him to his weekly sports class at the local YMCA b/c for the past 2 weeks he has been so aggressive with the other kids. And when I discipline him, he talks right back, such as, "You don't say that Mommy."
I make him sit for awhile and then he goes out there and does the same thing or something else as if he never heard a thing. It is very upsetting and challenging.
He also says very inappropriate things about killing and throwing people out of the window, etc., It is not said in an angry voice; he is not visibly angry like his brother was. He just is wired like an electrical current is constantly going through him. Sometimes I can barely get him to look at me when I talk to him.
I do think the rifampin is flaring his symptoms (at least I hope that's what's happening), but I thought after more than 6 weeks, we should start noticing some improvement. I know the psych issues take longer than the physical ones but I just want to see a little light at the end of this long tunnel.
Do you recall how long it took for you to see a turnaround, particularly with psych issues? I would love to hear anyone else's experiences.
Thanks,
tickbattler
Posted by bettyg (Member # 6147) on :
anyone? almost on page 2...
Posted by Stacyb (Member # 13084) on :
Hi Tickbattler,
My son has been on Rifampin for months now and the improvements in anger have been slow. He is also almost 12 too.
He had a positive Bart test from Clongen but both the LLMD's we see for him were not real convinced that tx for Bart would wipe out the anger that remained.
All his other symptoms that were acute such as neck stiffness, anxiety, ect.. went away with in weeks to months on a strong Lyme protocol.
Have you treated for Babs as that can be a cause of psych symptoms too?
Hope it gets better but IMO you may need to treat longer to see results. I believe the reccs are 6-9 months for Bart.
Stacy
Posted by Shosty (Member # 12232) on :
Our daughter's symptoms progressively worsened on antibiotics, to the point of psychosis. The LLMD kept telling us to continue. Finally, I took her to the PCP and asked about taking her off. She was back to her old self in 3 days.
Posted by lymie tony z (Member # 5130) on :
Wwwwellll now...shosty...took her off and she became her old self in 3 days ay?
Well now...ain't that interest'in!
First of all...TB...the child you refer to seems to have a more touret's syndromey or
autistic type of neuro-symptomology'ish kinda thingy goin on there...no?
How was it you "saw" your little one's "pain" go away?
I've always considered it a quite "invisible" type of symptom!
Anyway....I never got rid of any of my neuro symptoms with an oral "anything", ceptin maybe,
some metronidazole and that made me lethargic and even then...
I don't know that anyone would prescribe flagyl for a kid!
What's the llmd say again about his symptopms?
Is he/she a pediatrickLLMD?
Clinical DX or what?
zman
Posted by tickbattler (Member # 14873) on :
StacyB - thanks for your note. I know we have chatted in the past about rifampin. I would love to talk more but my pm box does not work any more on this site. Would you mind e-mailing me at [email protected]?
zman - yes, we see allegedly the best ped LLMD in the world (Dr. J), and he says it is OCD rather than tourettes. I'm not sure what you are talking about wrt "seeing" pain go away, but I think it is obvious (or should be obvious) to any parent when their child is feeling better.
My boy also has positive tests for babs duncani through Igenex and for bart henselae through Specialty Labs in CA.
Shosty - my son had these symptoms before treatment began and they did improve some but now on the rifampin they are getting worse. This is why I think it's flaring his symptoms.