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

[Guest guest]

I hate to repeat this but if this will help another child, and parent give this

some thought;

here goes. And I am not proud at all that I put my son through this, it breaks

my heart

thinking about how much he suffered.

My son had IVIG, for 2 yrs, and was given an infusion once every 3 weeks. And

no improvement at all.

**WE did not know he had lyme, or mycoplasma at the time.

Wished he had NEVER had this.

Why? Because one infusion, is made up from 20 + blood donors, and it is NOT

tested for Lyme, or XMRV.

So you could end up much worse off than when you started.

The infusion process can be a long day, if the nurse can not start an IV on your

child,

and they end up with multiple sticks in the arm. Then the side effects, and

each child is different; fever, gaging - wanting to vomit ( ususally runing the

IV too fast), diarrrhea

for days on end, tired, needing lots more sleep. This can go on for a few days

- to a week.

Also you have to know that a saline bag of fluid should be run in before and

after the IVIG fluid, so you don't run the risk of a clot in the vein. You will

then also have to do blood

tests regularly to check liver functioning.

The costs of this treatment $$$$$.

If your insurance provider does cover it, you will have to jump through whoops

to have everything to back up the need for it.

I don't know what else to mention about this, but ask if you still have

questions.

HTH's

Allie

>

> 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

>