peglem

What I found over the years is that when a treatment began working, when healing began to take place, we started seeing SEs from medication we had been using to deal w/ symptoms. So, maybe this is a good sign?

When I found out my daughter was on a ranbaxy abx, I called the pharmacy and got them to switch manufacturer. Still is generic, but made by a different company.

Not my find- A Canadian parent posted it to our local group. Are these the same researchers that did the young adult PANDAS IVIG case studies?

Thanks, LLM! I wondered if this was something 23&me tested for.

That was my understanding, but wanted Buster's take on it.

http://www.ijhg.com/article.asp?issn=0971-6866%3Byear%3D2013%3Bvolume%3D19%3Bissue%3D2%3Bspage%3D196%3Bepage%3D201%3Baulast%3DLuleyap

Since switching Al's minocycline to a different manufacturer, we've have seen a decrease in symptoms-especially bacne. Just saying.

She is compound heterozygous for 677 and 12something something- you know which one! Hope Allie doesn't end up freaking from it- her worse is really so unbearable!

Thank you. Side effects? Did you see obvious improvements or just a decline when it was stopped? I know sometimes I don't realize that something has been helping until I stop it.

I think she was prescribed Valtrex- just a 7 day course. Not sure of particular virus-just seems to be something the abx is missing, so thought we'd give it a try if nobody has an absolute horror story with it. She gets IVIG every 3 weeks, so titers measures are unreliable. I really, really, really have to thank you for all the MTHFR info. Have seen huge improvements since treating for MTHFR. Haven't done 23&me yet, but just the MTHFR treatment has drastically reduced fight or flight episodes. In fact, I think she's in a flare right now because of OCD issues and bed wetting. There is some measure of anxiety there....but no fight or flight meltdowns/rages. I can't stop smiling!

I'd like to hear your experiences with antivirals if you feel like sharing.

Well, it was helpful to me! Thanks.

Wow, what a wonderful, precious moment!

Maybe more than strep? The congestion sounds more like mycoP.

Wow, great find! Thanks for sharing!

antibodies=titers

Pediatrician, who works closely w/ our neurologist, who also rx's abx.

Get some footage of that stuff that happens when she sleeps, since a doctor is unlikely to witness that and it should help a good neuro to see what she's doing.

Allie has a cath port as well, for IVIG every 3 weeks. Any blood draws can usually wait for her IV days and the nurses just draw the blood before they hook up the IV solution. It has been very, very handy! I was really worried about doing this initially, but am so glad that we did!

These titers can rise from exposure only, not just with infection. In fact they are supposed to rise with exposure-to prevent infection. The healthy immune system is proactive.

I love it when my kid has a fever! Its like a vacation from PANDAS. Look in to Dr.T's alternative fever response- makes sense to me.

I do not know anything about those doctors, but just wanted to say that the CamKII activity is not specific to a strep trigger. However, I think most of the abx that would be used for bartonella would also be effective against strep, so maybe you don't need to worry about strep right now.

Thank you, Nancy and Nicklemama. That's good information for sure.

Why is that? I haven't used any birth control w/ my daughter, but doctors sure are recommending a lot.

What a great doctor! My daughter's doctor has done exams outside in the private courtyard, sometimes in the hallway. Those that get it, get it.