Treating for Bartonella AGAIN and need info. on herxing?

[trintiybella]

We are back treating for the bartonella again because of severe insomnia. The bactrim and minocycline for sure help with sleep, but make symtpoms so much worse during the day, that never seem to get better. Had her on this combo for over a year in the past and herxing never seems to stop. Her main symptom during the day is severe confusion. This has always been a symptom of hers but of course it is 100 times worse with treatment. Dr. B. wants to try topomax. We need to be really careful. She can't handle lots of drugs and going up to high doses on anything. So Dr. B. said to add little bits of things. Any advice is welcome.

[PowPow]

When do you see the geneticist or NYU?

Edited August 24, 2013 by PowPow

[PowPow]

Why did you start treating bartonella again? If she has been herxing for a year, that may not be good nor desirable. I really think you need to consider a different angle, I know you are with a geneticist and neuro second opinion, right?

Admittedly, I am not biggest proponent of infections directly causing symptoms, but this really does not sound right.

If something is making someone worse for so long, I would strongly recommend dropping it.

Did a lab show a current infection, is that why you are treating again?

Edited August 24, 2013 by PowPow

[trintiybella]

We see genetistis on Sept 4th. Treated bartonella again because its the only thing that gets her to sleep a little. Our family could not go any more with out sleep, day after day...week after week. It was too much for all of us. Dr. J. said put her back on and we have Dr. B trying different psych. drugs. Hoping that NYU has some more advice and possible IVIG can be covered there.

[PowPow]

what does she do when she's not sleeping? does she pace around? does she play? Scream? Cry?does she stare off into space?

I sincerely hope you get some direction and help on Sept 4th. I am praying for you & her, trintiybella!

[trintiybella]

She bouncedoff the wall in total confusion with racing thoughts. We bought computer to help calm her. Now she stares at same show over and over. It's horrible!

[lmkmip67]

Have you tried melatonin before bed? My son has issues with sleep and it has been a lifesaver.

[tu4four]

Wow. Returning bartonella. I am wondering if we are dealing with that. We are treating with Bactrim and Azithro now as well as arteminisin (?) for babesia and some detox things. My daughter took Mepron and Cefdinir and we treated for parasites and yeast. She had a horrible month or a little more, and then for the first time in a really long time her sleep began to improve. Could sleep at night. Would wake up at 7 or 8 a.m. For the first time in years. She was not 100% but much better. Now we have been off of the mepron and cefdinir for a couple of months and she is not sleeping. It is a wild ride around here.

 

Melatonin had stopped working for us. Even in higher/lower doses. Even giving her

[tu4four]

oops. Even giving her a decent dose of an anxiety med does nothing to knock her out. Good luck.

[rowingmom]

We are back treating for the bartonella again because of severe insomnia. The bactrim and minocycline for sure help with sleep, but make symtpoms so much worse during the day, that never seem to get better. Had her on this combo for over a year in the past and herxing never seems to stop. Her main symptom during the day is severe confusion. This has always been a symptom of hers but of course it is 100 times worse with treatment. Dr. B. wants to try topomax. We need to be really careful. She can't handle lots of drugs and going up to high doses on anything. So Dr. B. said to add little bits of things. Any advice is welcome.

 

If you know bartonella is the problem, can your doctors change abx combinations to address the same infection? Perhaps the bactrim (a sulfa drug) is causing problems. Three weeks after DD11 started bactrim she had an allergic reaction to it, with hives, facial swelling etc. For the 3 weeks before the allergic reaction she had some of her worst herxing ever - we actually had to put her in a wheelchair. This was at the beginning of her treatment, however, and I had always assumed the large herx was due to the first big die-off. Just thinking about it now, perhaps her system was just incapable of handling bactrim.

 

We switched to biaxin and added rifampin, and stayed on this combo for a year before variously adding plaquinel, azith, mino, malarone and pulsed tindamax for another year - all the while using A-Bart, A-L, japanese knotweed for brain/systemic inflammation and lots and lots of probiotics. While she was on bactrim her sleep did not improve. The only thing that helped at that point was the benedryl we gave her for the allergic reaction. We kept that up for 2 weeks (I didn't want to give it up, she was sleeping so well). Melatonin eventually worked for us and we used it for 2 years. We discontinued it this summer.

Edited August 27, 2013 by rowingmom