Test Results in IVIG?

[cfamily]

Hi Group,

 

We finally got our CaM Kinase 181.

 

Lyme Igg/Igm was .33 now .41

CD 57 is 41

 

Our dd10 is currently unable to attend school because the ocd is severe (panic).

 

One doc thinks hd ivig as soon as possible...the lyme doc thinks that it is not necessary and we need to give it time.

 

We are worried about what kind of a success rate we will have if she is fighting lyme.

 

We are also worried about what kind of funky thing we'll see in 20 years from the ivig.

 

Again, we are confused about what steps to take next. Looking for input and opinions please.

 

Sharon

Edited January 28, 2011 by cfamily

[sf_mom]

We are not moving forward with hdIVIG at this time for our younger twins who were thought to have PANDAS but actually have congenital lyme. Our older son has had 3 hdIVIG for PANDAs last year. We have been treating for LD since last August and are seeing continued strides towards full recovery..... much further ahead in recovery than we ever imagined.

 

hdIVIG has not been indicated for Lyme in the past. There is couple of Dr.'s recently using for the PANDAS/Lyme cross over and nobody knows yet if its truly helpful.

 

I always recommend to treat the Lyme first, get their bacterial load down and if treatment should stall then maybe consider/proceed with hdIVIG. It is not something you need to rush into on the front end before giving the combo'd antibiotics a try. Some kids do get better rather rapidly while others take a little longer but you should definitely be able to see a positive trend in the first six months.

 

-Wendy

Edited January 28, 2011 by SF Mom

[LNN]

You remind me of when we were facing the yes/no decision on IVIG (and at the time, we never suspected lyme). I had gotten myself so twisted up with worry that I just wanted someone to tell me what to do. If someone had said "listen to your gut" I'd have punched them, because I had no idea what my gut was telling me. I just wanted to do the right thing and I had no idea what that was.

 

I think your decision depends on how the cost of IVIG impacts your family, the support system you have for your family, whether you have other children who might be effected if IVIG were to cause an increase in symptoms, if you have a spouse - are you in agreement on treatment....

 

I do think if you decide to do IVIG with lyme, you need to be prepared for a longer or more serious "herx" or "turning back the pages" sort of response for possibly many weeks afterward. It may not happen, but I would mentally be prepared and I would read up on detox strategies/supplements.

 

Neither lyme treatment nor IVIG are a walk in the park. Both have drawbacks. Both have benefits. In one breath, I'd be freaked about the long term time bomb IVIG might be and in the next breath, I could make myself think that maybe IVIG would give my son antibodies that might protect him down the road. There's no way to ever know.

 

I tend to agree with Wendy's view that there's no harm in giving a combo abx treatment a try first and then seeing where you're at. I'm sure having your child so debilitated makes it feel like you must do something NOW and you just want to take a nuclear bomb to whatever it is making your child sick. But I think you need to sit down with a pro/con list. After that, wake up on Monday and tell yourself "We're doing IVIG" and do that for 2-3 days. Then on Wednesday, wake up and tell yourself "we're postponing the IVIG decision until we do 3 months of abx combo for lyme" and tell yourself that for 2-3 days. Then next weekend, decide which period of time brought you more peace of mind.

 

Best of luck with this tough decision.

[amyjoy]

Have you tried using antibiotics for lyme? If the lyme is causing the neuro problems / OCD then the symptoms could possibly improve with the correct antibiotics. Makes sense to try that first.

[cfamily]

Thanks for the input.

 

Our current med schedule since january 11th, is:

 

She did also have a bycillan (sp?) shot in Dr. B's (Stevensville) office.

 

1000 aug

250 azith

125 3x per day vancocin

 

fluconozole

pearl probiotics

 

I also forgot to post that dd has low D 20 (25 hydroxy)

 

She has high MCH 30.7

MCHC 35.4

 

Can someone correct my thinking?

 

Get strep and body overproduces abnormal antibodies

 

abnormal antibodies attack basil ganglia

 

exposure to other viruses can cause same reaction

 

If she has lyme or other co infection how will the ivig reset her immune system?

 

Also, if someone could point me to a post where one of our super smart folks explains about the leading hypothesis of mimmicry, etc. I want to REREAD AGAIN!

 

I feel like i need a diagram of the body and need to learn what to do to get each part healthy (brain, gut, intestines, immune system) to really understand what is going wrong. Our PA said that having low D can cause neurological responses anxiety, etc.

 

Recently an internet trail led me to an article about super antigens and about how they have discover 40 (+-) strep family superantigens. How can we ever get our kids healthy!

 

Sorry for rambling.

Edited January 29, 2011 by cfamily