Re: any one or kids tested for primary immune disease?

[Guest guest]

Kendra,

Thanks for your reply - I know that this website really has been pushing for

better treatment and advocacy for people who suffer with these kind of

deficiency's - I wonder if you were to go back and talk with a doc that is very

knowledgeable maybe they would have something that would be less expensive

compared to 10 years ago?  It will be interesting what we find - as my other

two girls I am sure will have to go in and be tested also - I will let you know

how things go - they do have a doc list if you email them and ask them to send

you one - let me know I have a contact from that website that would love to help

you if you are interested.

I thank God that I found my llmd and things are going pretty good one year into

treatment for lyme - I have been sick really bad for 10 years but know I was ill

on and off from 9th grade and up.........years and years waisted - it's a pure

crime!!

Diane  (WI)

________________________________

From: Kendra <KCuyler@...>

; dkbmama@...

Sent: Wed, December 30, 2009 1:51:48 AM

Subject: [ ] any one or kids tested for primary immune disease?

 

Dear Diane

Thank you for providing the link. There was a good article about IGG

subclass deficiency..

I've been diagnosed (dx'd) with Low IGG Subclasses for over 10 years

and was treated with IVIG back in 1999/2000 for over a year (when I

was about 40 y.o.) w/o noticing much difference in my symptoms but

never any bad reactions either. (Wasn't dx'd with Lyme until 2006,

but had classic rash in 1986.)

I've continued to decline during the past 10 years and barely get out

of bed anymore. If I could afford the co-pay I would continue

treatment, but weekly treatment cost approx $10,000 a month and my

co-pay was about $2,000.

I would love to know if anybody else has been dx'd with low IGG

subclasses - anyone?

tia

Kendra

On Tue, Dec 29, 2009 at 9:29 AM, Diane <dkbmama (DOT) com> wrote:

> http://www.primaryimmune.org/

>

> One of my daughters is going to be tested for this tomorrow - can we get this

from having lyme disease or maybe give this to our children because we had

untreated lyme disease when pregnate with our children?  Something to look

into???  Anyone with any insight to this?

> thanks -

> Diane