rowingmom

I can relate every day. Our piano teacher had to quit because he had never seen a child with such a short and unpredictable fuse. Pounding her head and legs if she made a mistake. Before her treatment started she used to bolt from the classroom several times a day because she could not handle the sound and light stimuli, and could not concentrate on anything if there was any sort of distraction. Any noise would cause ear pain. She was grouchy all the time and being around her was not fun. To escape she would head to the computer or ipod, or stick her head in a book. She never read the books through though, just jumped around reading favourite parts. DD is doing fairly well at the moment. We have switched from treating lyme/bartonella with biaxin/rifampin/tindamax to lyme/babesia with azithromycin/minocycline/malarone. Although I am not sure if it is the antibiotic properties of these drugs that is doing the trick, or whether they are having some anti-inflammatory effect.

Our LLMD started DD11 on bactrim for lyme, but that caused an allergic reaction, so we moved to biaxin. This was used along with rifampin for bartonella. DD11 is now on a combo of minocycline/azithromycin/malarone for lyme/bartonella/babesia.

DD11 has lyme/bart and PANS reactions (with ticcing but little OCD) to strep/viral infections. She has positive ANA - meaning autoimmune connective tissue disorder. ANA remains positive after 1 year of treatment for lyme/bart. When she was first put on PenV for strep, all PANS symptoms cleared. When she was put on a second round for strep reoccurrance PANS symptoms cleared, but then started creeping back, even while on PenV. She was started on biaxin for lyme which helped her emotional/social behaviour, but her ticcing didn't stop until rifampin was added for bart. Both Abx are necessary for PANS/pain symptom resolution, when either is discontinued symptoms start gradually returning. She had been changed to another multiple Abx combo minocycline/azithromycin/malarone and her symptoms appear stable so far. In between her first strep infection and her Dx and treatment for lyme, she started grade 4. We were sitting down trying to do some homework when she mentioned that she had forgotten how to hold a pencil. I thought that very strange at the time, but now realize it's par for the course, although she had no trouble remembering the piano key sequences for two pages of piano music (after 2 years of lessons) and unknown to the piano teacher, could not read the music, sigh.

Oh dear, I have been supplementing CoQ10. I learn so much from you guys .

Interesting - DD11 has just started treatment for babesia sp. after having a negative Igenex result as well, but the LLMD feels that this may be the reason why bart/lyme improvements are not holding when abx are removed. Her WBC's are at the low end, and her CD57 is 18. I guess a retest for babesia should be done at some point - thanks for the heads up. DD11 has been on mino/azith for 11 days now, and started malarone on Mon. Huge raging meltdowns on Monday and Tuesday at home (she kept it together in school), but yesterday and today (so far) as good as an angel, even with some triggers, best she has been since we started treating June 2011 (there now, I'm jinxed ). Mon and Tues just seem a little early for a herx reaction.

Your DD's boyfriend's symptoms may not be caused by strep. He needs to see a doctor that understands PANS reactions. Glad to hear your DD's symptoms are resolving.

Now what am I going to do with my evening

This is interesting. Our LLMD gave us some Virapress (an extract of bovine protein/albumin/globulins) to help increase/regulate DD11's immune/autoimmune responses. From their website: "The Virapress formula is composed of naturally occurring immunomodulatory agents, classified as proteins that include the cytokines interferon, and interleukin. Virapress works by increasing the amount of these regulating agents in the body, and thus intensifying the immune systems response to trauma such as a viral outbreak. In the case of an autoimmune disorder, specific cytokines communicate to the immune system to back off from destroying healthy cells." Except for Abx, I always try these new supplements on myself first, so I tried Virapress - 2 drops/day for three days. The LLMD said to give DD11 7 drops per day, and the bottle suggests 1 ml/day. After 3 days I could barely function because of flu-like fatigue and muscle aching. The inflammation was not fun, and took quite a while to resolve (with the help of anti-inflammatories). Needless to say I have a full bottle of this stuff ($90) sitting in my fridge. I certainly won't be using it on DD11 any time soon. @Kimflow - just wondering if this may be the same type of reaction to which you are referring. I tried searching the net on low dose immunoglobulins and inflammation and had no luck. Everything I read points to low-dose IG being anti-inflammatory.

Thank you everyone for your insightful comments. I wasn't too up to speed on babesia - the links have been helpful.

Can I ask what your daughter's babesia symptoms are? I read the Wayne Anderson article several months ago and kind of dismissed it because sounded like there was a lot of lyme/bart overlap, and I was having trouble teasing one out from the other. Thanks

Thanks SFMom. If you look up lyme symptoms, you will find all of DD11's listed symptoms there as well. Dizziness, night sweats, anxiety attacks, pain at base of skull etc. The LLMD and I were going on the assumption that we were looking at lyme/bart because treating for lyme/bart seems to have resolved the problem, although DD11 is unable to hold her own when Abx are withdrawn. I do realize that having a neg result for babesia doesn't mean its not there. So, much to my chagrin, the LLMD wants to switch up abx from biaxin/rifampin/tindamax to minocycline/azithromycin/malarone to see if we get a BLO herx. So far so good with the mino/azith, but I am going to give it a few more days to get a baseline before adding malarone. As for her pick-like headaches - they seem to be in the bones of her skull, always in the same spot, half-way between the top of her right ear and the top of her head. I have changed my signature to reflect that. You guys have all the greatest suggestions! Keep them coming.

Started a new topic

Just curious - your daughter's joint pain has subsided, but what other pain is she left with? My DD11's long bone pain (shin and forearm) and ticcing did not resolve until rifampin (for bartonella coinfection) was added to biaxin. Unfortunately it keeps reimmerging when we discontinue either Abx. Biaxin alone helped with her minor OCD, anxiety attacks, night sweats. Does your daughter have any coinfections? Don't beat yourself up on the band 41 IgM - it is not lyme specific (only flagetta specific) and you could not have known.

My DD11's word repetition (repeating herself - palalalia, repeating others - echolalia) is apparently a form of verbal ticcing (she says she gets premonitory sensations). This began about the same time as her motor ticcing after a rash reaction to a bug bite in 2008. I paid it little notice (thinking it was just a quirky kid thing), and because it doesn't happen all the time her pediatric psychologist didn't see it either. I was told that she would have a dx of Tourette's if vocal ticcing went along with her motor tics for more than a year (which they did). Both her motor and vocal ticcing, as well as other PANS symptoms - decrease in handwriting ability, slight OCD, urinary frequency, emotional lability - and social regression (loss of maturity level) and aspergerish symptoms wax and wane with bacterial/viral infection as well as with changes in abx combinations. Several times during the last year and a half she appeared to be NT (no ticcing, OCD, PANS symptoms), but if she is coming down with a viral infection (or strep infection) her symptoms will reimmerge. They were expecially bad while we were pulsing tindamax this summer to try to kill the cyst form of lyme. Two weeks after discontinuing tindamax, ticcing is gone, most other symptoms have resolved. We are now in the midst of switching abx so who knows what will happen. DD11 and I do notice that if she has a fever during viral/bacterial infections most of her symptoms resolve while she is febrile, but tend to be worse on either side of the infection.

I have become consumed with educating myself about the vax and everything makes perfect sense on why we ended up with our "PANDAS/Lyme" diagnosis, which neither of those diagnosis made as much sense to me as the possibility of vaccine injury. DD10 also showed indication of vaccination injury after her 15 month MMR. Did you have a positive lyme diagnosis and did she have any co-infections? Did you end up addressing the vaccination injury with homeopathic remedies?