Treating Bart - how long?

[Hopeny]

We've been at it for six weeks. I have seen some rages come into the picture, DD now gets pretty easily set off. Her leg/foot pain is as bad as it was when she started Rifampin/Zith for Bart. Have others seen rages like this from die off and how long did they last? When should I start seeing a reduction in pain?

I should add her ASO and Myco remain high so we are trying to figure that out.

She came back + for Mold and Yeast so working on that as well. I know it's all contributory but I had hoped we would see some reduction in pain by now. And the rages are worrying me, I can handle it for now but if they get worse/more frequent I am not sure how long I can keep going with this.

[MamaOnAMission]

my child had a really bad time on with/rifampkin. herxing never stopped. she is on doryx and bactrim and herxing was bad for week or so, but calmed down. good luck to you. it is so tough on the nerves. i know. thinking of you....

[rowingmom]

We specifically treated bartonella for 1 year with rifampin/biaxin (BW herbals and homeopathic detox added to that mix) and for the last 3 months of that, added pulsed tindamax.

 

Throughout that time DD11's symptoms were still there, although mostly in the background. Shin pain would return during exertion - dancing class, or while running in gym class. Low level emotional lability and a general negative outlook remained. Rages declined (maybe 4/week), as well as fatigue and most of her motor/vocal tics (which would only flare if she caught any viral or bacterial infection). Symptoms would gradually return if either rifampin or biaxin were removed or exchanged for an herbal protocol. It took about 3 months of rifampin/biaxin before her pain/ticcing/emotional symptoms gradually started to decline to a new baseline. We began treatment in June 2011, so her worst period was during the summer. I am sure being at the cottage with friends, swimming etc. probably distracted all of us from the worst of it.

 

After a year of that our LLMD has decided to treat any protozoan/parasitic infections that may not have shown up during testing (ie babesia, toxoplasma etc.) with 3days on/4days off pulses of malarone/azithromycin/tindamax/minocycline. For the first 2 pulses she had symptom flares (expecially evident with emotional lability and motor ticcing) for the first two days of the pulse, things started to resolve by the third, and were great during the rest of the week. Now she has a little emotional lability at the beginning of the pulse but no increase in other symptoms. I can say for the first time that DD11 is HAPPY. Her executive function is very much better. She dances with very little pain and her other symptoms are 98% resolved. She even made it through a nasty cold last week with no ramping of symptoms (and that was through a pulse as well).

 

There, now that I have jinxed myself, the LLMD wants her to complete another 1.5 months of pulsing (with no reported herxing) before we begin removing abx from the protocol. I have no idea what will happen then.

Edited December 18, 2012 by rowingmom