Did your child take rifampin?

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tickbattler
Regular Member


Date Joined Jul 2007
Total Posts : 327
   Posted 3/11/2009 9:00 AM (GMT -6)   
When I asked Dr. J about a possible medication switch for my 4 year old for what I suspect is bartonella (anger issues), he mentioned that rifampin works well on bartonella in children.

I thought this was a pretty tough drug to tolerate, but would love to hear if your child took it and if there was improvement. What symptoms resolved under it?

Did he/she take it on an empty stomach?

Thanks,

tickbattler

Keeping the Faith
Regular Member


Date Joined Nov 2008
Total Posts : 77
   Posted 3/11/2009 10:15 AM (GMT -6)   

Hello,

We see Dr. J, too, for my 16 year old daughter.  Our initial visit with him was on 10/31/08 at which time he presumed that she had bartonella along with the lyme.  He did put her on rifampin along with zithromax and plaquenil.  She was on the rifampin for three weeks at which time we got the blood test results back which showed that she had two forms of babesia which he wanted to treat first.  I don't know why he didn't continue to treat the bartonella.  She tolerated the rifampin quite well.  I think that is the medicine that turns your urine a different color, so that was the only unpleasant thing we noticed.  She did take it on an empty stomach.  I don't know what it took care of, but I can tell you since we have been off of it that the rages and mood swings have come out in full force.  Also, other bartonella symptoms have intensified since being on no meds for that.

We see him again on Monday.  In the meantime, we have consulted Dr. K (recommended by Dr. J) for her inability to stand or walk.  He took her off the meds for babesia and started her on the meds for bartonella (minocycline and cipro).  These did not work at all, in fact, they seem like they ruined her stomach.  Right now she can't tolerate any pills and is starting the IV Rocephin treatment for the lyme.  The bartonella is taking a back burner for now because she can't take any orals.  However, when I go to Dr. J on Monday I am going to see what he thinks we should do to treat the bartonella.  Maybe we will be back on rifampin, who knows.  These two doctors are going to work together on her issues.

I wish you lots of luck.  You are in the best place to get your son better.  Dr. J is wonderful, and so is Dr. K if you ever need to see him.

Lisa


tickbattler
Regular Member


Date Joined Jul 2007
Total Posts : 327
   Posted 3/11/2009 11:32 AM (GMT -6)   
Hi Lisa,

Thanks for the info. Sorry to hear you are dealing with this as well with your daughter. I hope you are seeing some improvement, at least in some areas. Does she have a headache by chance? That is my son's worst symptom. It never goes away. I think he has head buzzing too, but am not sure since he's only 4 and there is the communication issue. Does your daughter have that?

Can you share a bit more about Dr. K? Is this Dr. D.K. in Washington? Where is this doctor located and what is his specialty? If you don't feel comfortable sharing here, you can e-mail me at belval@comcast.net.

I know my son has two strains of bart (Hensealea and Quintana) and really hope to try the rifampin. My husband has bart quintana and the only thing that seems to work on him is levaquin, but I would expect rifampin to work too if he tried it. My husband has backslid on doxy and omnicef, as well as on Mepron and zithromax and on ceftin. I know zith and doxy can sometimes help bart, but not in my husband's case. He has a constant headache and head buzzing as well.

I think we have made progress against my son's babesia microti, as his fatigue, stamina, strength and appetite have improved immensely. Also improved is insomnia, bed wetting, and muscle tone. But his headaches seem to have gotten worse, along with his behavior. It seems he actually feels worse than when we started treatment 10 months ago. The slightest thing sets him off and he starts kicking things and saying he doesn't feel well and just acting horrible. He no longer wants to go to preschool and he used to love it.

We are trying taking him off the artemisinin, as Dr. J said it could cause behavior issues. I just don't think that is the problem. I don't want to wait until early April at our next appt. to get a med change. If my son's behavior is not better in a few days, I may request a med change. I hope he will agree. I have been worried about him not improving for the past 6 months and I don't want to wait even one more week if the meds aren't working!!!

I do agree that Dr. J is wonderful and am very happy with him.

Thanks again for your input. Good luck to you.

tickbattler

GLbaby
Regular Member


Date Joined Aug 2006
Total Posts : 188
   Posted 3/11/2009 6:49 PM (GMT -6)   
My mother was on rifampin and had a reaction to it that shut down her kidneys. She was in the hosptial for two week recovering from acute renal failure. I, myself would stay clear of it, Just an FYI.

tickbattler
Regular Member


Date Joined Jul 2007
Total Posts : 327
   Posted 3/11/2009 7:05 PM (GMT -6)   
Thanks for the warning GLbaby...that is very scary! I will be sure to ask Dr. J about that issue.

tickbattler

MarriedtoLymeinNJ
Regular Member


Date Joined Sep 2007
Total Posts : 273
   Posted 3/14/2009 8:16 AM (GMT -6)   
both of my kids have been on and are on Rifampin. Funny how my kids thought the orange pee was a trip :)

The see Dr B in Central Jersey- who we love. he started them both very slowly. they do take it with food. Acutally DD has been off Bart meds and is on maintenance rx.

DS had a bad relapse of the Bart in Dec, restarted Rifampin. Last visit he increased his Rifampin dose and we started him on 1/2 Zhang HH capsule. I think that starting the 2 at the same time was too much b/c the moods and anger issues are back. I am not increasing his HH dose for another couple of weeks until I can see if he adjusts. if he doesn't then we'll talk to his llmd, and see where to go next.

Our ped llmd, Dr B, is very cautious with my kids- goes very slowly- gives them breaks when he thinks they needs it- so I would imagine if he didn't think Rifampin was ok for kids, he wouldn't use it.
Chris: Diagnosed Lyme, Chronic Mono
Married to Lyme in NJ aka Gary: Lyme, Bartonella
Mom to Scott: Lyme, Babesia, Bartonella
Mom to Caitlyn: Lyme, Bartonella
My Blog: http://faerywings.wordpress.com/

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