IVIG: what type exactly, by whom? Re: [BorreliaMultipleInfectio

[Guest guest]

My son has been getting monthly IVIG for 2 years and I feel it is not only

(still) a safe product, but for him beneficial. I posted a link to how the

product it is processed below. I should note that even if they didn't know to

look for or screen out XMRV, it would get inactivated and removed through the

processing used on all human blood products that have the potential to be

biohazardous (i.e. even if the screen shows it is negative for viruses, they

still must treat it like the virusus may be present). Also, note that I take the

leap of logic that if they are filtering out particles as small as a virus

(allowing the even smaller immunoglobulin protein to go through) the much larger

forms of lyme will be caught up with the virus particles in the filtration.

Anyhow, here is a what the manufacturer lists for procession controls:

http://www.gamunex-c.com/html/hcp_information_manufacturing.htm

There is always the cost/benefit aspect, and I would have to say we are very

lucky in that the drug is paid for by insurance (less my 1.6$K out of pocket

max+deductiblt) and the infusion he tolerates very well, his nurses are very

skilled, they bill very reasonable, and insurance covers the procedure out of

network (60%) after my deductible. Do I see major improvements in his autism

as a result? Well not much or at least not quickly or dramatically. But I see

gradual improvements in his GI and overall health and sleep. Most importantly,

the strep titers came down and have stayed down. Prior to IVIG, although my son

never tested positive for strep infection, his siblings and I were getting strep

throat 2-3 times a year. None of us have had strep since he started treatment.

Insurance coveres the drug and administration because my son has and CVID

diagnosis. It was several months after we started IVIG that he tested IgM

igenex positive for lyme, which I now believe he got 1.5 years ago during

camping. If my hunch on the lyme timing is accurate, then perhaps the IVIG has

had the added benefit of minimizing the severity of infection/symptoms. When we

treated for lyme and bart with ABx, he didn't really " change " from the Abx

treatment. And while bart appears to be gone, lyme of course didn't go away.

I probably would have weaned him off IVIG sooner had it not been for the more

recent lyme diagnosis. But still, it is time to consider pulling it away and

see how his immune system functions without the added support--because at some

point I think there becomes diminishing returns for the support this therapy

gives.

Becky

>

> I just don't think it's worth the risks, but I don't want to upset

> anyone who is using it. We are all struggling and doing whatever we

> can. But, for me personally, I wanted to try the gentle, low-risk

> things first. Since my family responded, we didn't have to do the

> higher risk or expensive things. So, please don't let me upset anyone.

>

> Love and prayers,

>

> Heidi N

>

> FDA guidelines for IVIG state that the product should not contain

> samples which are HIV, hepatitis B, hepatitis C positive and should be

> screened and treated in a manner that destroys viruses. Given the

> raising awareness of XMRV (or MLV) is quite recent, and there have not

> been guidelines established about this newly found retrovirus or

> recommended XMRV screening. FDA has decided to indefinite deferral for

> blood and plasma donors with a diagnosis of CFS or PC, and not to use

> these blood donations for transfusion. It is not clear to me if IVIG is

> still considered a safe product, procedure. What do you all think?

>

>

http://www.fda.gov/AdvisoryCommittees/CommitteesMeetingMaterials/BloodVaccinesan\

dOtherBiologics/BloodProductsAdvisoryCommittee/ucm234884.htm

>

<http://www.fda.gov/AdvisoryCommittees/CommitteesMeetingMaterials/BloodVaccinesa\

ndOtherBiologics/BloodProductsAdvisoryCommittee/ucm234884.htm>

>

> Limin

>