Tindamax anger - herx or side effect

[mdmom]

I should know this by now since we are 2.5 yrs into aggressive lyme & co treatment.

 

We are pulsing 'Tindamax BID this week and my daughter is angry - it's not awful, but more than I've seen in a long time. She used to have Bartonella rage. (she is my non-PANS child).

 

She seems to be nearing the end of her IV treatment for Lyme & Co (she's been on IV for 19 months) and her symptoms are mild at this point.

 

Do you think the Tindamax anger could be a herx this late in the game? Or have others noticed this as a side effect of Tindamax?

 

 

[rowingmom]

Wow. BID for a week would have sent DD for a real loop, and this was after 1.5 years of treatment of biaxin/rifampin with some other things added at times. We couldn't do more than 1/2 dose BID for 3 days. The herxes kept building and building if we didn't pulse for short intervals (3 days on, 4 off). Emotional lability was definately one of her herx symptoms (along with ticcing and bone pain).

 

Our LLMD pulsed tindamax with a couple other abx for about 4 months. Each successive herx starting each 3 day "on" period resulted in smaller and smaller herxes. When there was no more herxing DD weaned off treatment.

[Hopeny]

I have no direct experience because we decided to pulse abx instead of risking a regression with tindamax, however when it was considered with llmd it was to be weekends only. Based on a number if posts I have read of regression, I would consider stopping if you really see a decline or trying one or two days a week

[LNN]

MY DS could never handle tindamax, not even pulsing 1/2 doses on just the weekends. We tried it for 5 weeks at the peak of lyme treatment and had to stop (but saw awesome improvement afterward). We tried it once more at the end, just to see if there were any cyst forms left, and he again reacted badly. The decline wasn't worth it. He was basically symptom free. So I tend to think it had more to do with his body not being able to handle something in tindamax rather than it being lyme related. We never figured it out. We just stopped the tindamax and he went off all abx shortly after that. He is struggling with yeast right now, but other than that, no signs of any residual lyme. I'd think if the tindamax was a herx response, we would've seen a return of lyme symptoms (he's been abx free for 8 months). So I don't have any scientific input, just an anecdote that my son doesn't seem to be able to handle tindamax regardless of whether lyme is at play or not.

[rowingmom]

Unlike LLM's son we were able to continue pulsed tindamax for about 4 months.

 

My observation of progressively smaller herxes (until at the end DD wasn't reacting at all to the addition of tindamax) makes me think that, in our case anyway, what I was seeing was a herx.

 

DD has never had symptoms of lyme and all of her herx reactions to tindamax were bartonella-type symptoms (shin pain, emotional lability, raging) and ticcing.

[sf_mom]

We did have intense herx's from tindamax that included emotional liability and rage behavior that took time to calm down (several months). Our older DS was on it daily for 22 weeks and younger DD daily for over six month if not longer. Tindamax will treat or get at biofilms as well and perhaps that is adding to your DD symptoms. You can google Eva Sapi & Tindamax.... she discusses how effective Tindamax is on biofilms.

[mdmom]

Thanks for the input everyone.

 

I guess I am hoping that after all this time, what I am seeing is not a herx. DD14 is really on her way to getting back to normal - she is back to school after a 20-month absence, getting good grades, making friends (remember she is non-PANS and my neurotypical kid). But I am wondering how will I be able to tell when she is ready to end Lyme & Co tx. Our LLMD says that she needs to be symptom free on IV for 6 weeks and then switch back to orals and remain symptom-free for 3 months before pulling all meds. DD is far from symptom free and I think that perhaps some of her symptoms will be permanent, so when do you start counting the symptom-free days if some of her symptoms seem permanent? So perplexing to me.....

[rowingmom]

I am leary of discontinuing DD's bartonella treatment. She is off abx, but I won't discontinue herbals until she no longer has any symptoms or herxes with protocol changes.

 

DD12 is functioning wonderfully. Happy, little emotional lability, no ticcing, getting B's/A's in school with no help from me or accomodations from the teacher. Has friends, plays piano, dances, horse rides. Is a normal kid.

 

But bartonella is still there, lurking. I know from the little herxes produced by ramping A-Bart. By taking the weekend off supplements and then Mon/Tues showing an uptic in symptoms which resolve by Thurs/Fri.

 

http://pediatrics.aappublications.org/content/121/5/e1413.long

 

For this reason we will not be discontinuing treatment for a looooong time.

Edited November 8, 2013 by rowingmom