LaurenK

How is your son doing now? Any better with Lyme treatment?

The IgM p23 completely disappeared. It did not turn into an IgG. Instead we now have a p66 IgG. Q fever is supposedly a tick born illness but a lot can cross react with it.

That is a subject of great debate! Although the verdict is still out on that, my son has had 4 ivigs and is working with a Lyme specialist as well. We have seen the most improvement (over the last 2 years) with this combined therapy. About how much symptom resolution have you been able to see?

Thx everyone. Im so lost right now.

Does IVIG still work with Lyme Co-infections??

Been reading a lot and wondering if anyone has any experience with Jernigan and his protocol??

My son came back positive for Q fever on top of everything else, but it was only IgM positive. Could this be cross reactivity?? Before we had a Igm P23 which completely disapeared with time.

Just looking for some happy stories with Lyme. Anyone out of the fog with this horrible disease?

What does this mean?? Anyone know the significance?? Thx

If your daughter was 100% functional after steroids, why settle for the quality of life she has now? Why not pursue IVIG again or steroids? Why not consider other possible avenues of treatment like brain stimulation??

Did it help PANDAS? and to what extent??

Mayzoo- did those meds help your daughter?

Does anyones child take rilutek? About how much of a decrease have you seen with it in symptoms? 50% 60%??

HOly H*** my son is so much worse after being put on biaxin by Dr. B. What does this antibiotic work against?? Thx

Maybe don't treat the infections and just find some good supplements to control inflammation and then do IVIG when necessary?? Maybe that would be easier?

Definitely not in remission. DS19 is doing much better, and I'm holding my breath (although he does keep having some fairly short-lived flairups.) DS-16 is still having a fair number of problems (resistent strep, lyme, and has high IgG to about 6 viruses, and mycoP.) So, he's chronically sick, but nowhere near as bad as prior to PEX and IVIG. When you say "much better" what do you mean? Does he still have OCD and tics? Prayers that he gets better soon.

T potter I thought your son was doing well and in remission.

If all of them can cause symptom flares, is there something that these bacteria have in common??

This may seem like a dumb question to ask but, are you sure your child has PANDAS?

How does riluzole work for your daughter?? Are PANDAS symptoms eased? We use low dose namenda with success for tics, but high dose aggravates.

How does riluzole work for your daughter?? Are PANDAS symptoms eased? We use low dose namenda with success for tics, but high dose aggravates.

Did you do a follow up IVIG in case it was just a bad batch of autoantibodies?

I think the dosage is really really important because I read that low dose is pro-inflammatory. I thought the highest dosagewas 2g/kg. I thought that was what swedo recommended?

Not sure about your question, but had you been doing high dose or low dose IVIG with Dr. B. I heard that only above 1.5 is good for autoimmmune disease?

All of these stories that I read, everyone relapses with IVIG. I feel like these infections never leave!!