This is topic If IVIG Boosts the Immune Syst. so well. Why can't we all use it? in forum Medical Questions at LymeNet Flash.


To visit this topic, use this URL:
https://flash.lymenet.org/ubb/ultimatebb.php/topic/1/95340

Posted by Pinelady (Member # 18524) on :
 
I won't bore you with article after article. Just one I found as very new...

We know it can work to improve outcomes in many patients after a first line treatment or as a co treatment.

Why is it not used more??? Has a drug company got a monopoly on it or what???

http://www.ncbi.nlm.nih.gov/pubmed/20500678
 
Posted by sutherngrl (Member # 16270) on :
 
I think for some of us with LD that maybe one part of our immune system is already "too" boosted and possibly needs to be calmed down.

Thjs is just an idea I have formed due to my own experience with lyme treatment.

It might work for some.
 
Posted by dmc (Member # 5102) on :
 
ya think $5000 a month expensive for Tigecy IV?

From http://www.cidpusa.org/ivig.html

"A single infusion of IVIg may cost about $3000 for a child to $10,000 for adults. For a child the cost is lower as a small IVIg dose is used. If you have insurance you will see the cost of infusion may go to 100,000. "
 
Posted by Hoosiers51 (Member # 15759) on :
 
I would love it if it was readily available, like Vit C infusions (ha, I can dream), and we could all just try it to see what happens.

If I had to guess what holds people back....it would be the hassle of getting it approved (insurance companies have strict guidelines for who can receive it and who can't), and the fact that there is uncertainty/risk, considering it's a blood product.

And maybe also the fact that it seems to help some and not others, and like IV antibiotics, it seems to be a slow road for some people, not an immediate fix.
 
Posted by IckyTicky (Member # 21466) on :
 
Who the heck can afford that! No wonder nobody can get better. My gosh..
 
Posted by Hoosiers51 (Member # 15759) on :
 
I know I talk about LDN all the time....but from my experience, it does seem to help the immune system. I do it in conjunction with antibiotics.

www.lowdosenaltrexone.org for info on why it works, prescribing info, etc. This stuff is cheap! I pay like $30 a month.
 
Posted by IckyTicky (Member # 21466) on :
 
Thanks Hooisers
 
Posted by karenl (Member # 17753) on :
 
If you read the label of IVIG I remember that bood infections are listed as a contraindication.I know this label was the reason I decided against the IVs and was gradually taking IVIG 2000 powder.
 
Posted by Pinelady (Member # 18524) on :
 
I found these article useful for those that would like to delve into the information.

http://www.iphandbook.org/handbook/ch02/p04/index_print.html

http://www.library.ca.gov/crb/96/07/BIOT_CH3.html

They explain some details as to why we can't make progress.

I now understand why the college kids have to get by on a pittance for their research.

They either have to lie and state directive as something else or anything to get funds to work.

Research has steadily declined since this started.

Soon none of them will have a right to look for anything....And we the people will be stuck in the muck.

We will get no where until we change this. By law those that already have patents are silenced.
 
Posted by peter j (Member # 11825) on :
 
I think the most important reason why it isn't used more is cost.

I've tried it, and I didn't improve much (if I got some improvement at all).

Hoosiers51, I agree LDN is cheap and often helpful.
I might have had some effect of it.

Amanda, thanks for telling about it.
 
Posted by davidx (Member # 8326) on :
 
I've been on IVIG for some time now and for me it seems to help regulate my immune system rather than boost it. My body seemed to be attacking itself and was "too boosted" (auto-immune?) and the IVIG seems to have stopped that process and has allowed my body to heal for the first time since i began treatment.

It is expensive but you need to check with your particular insurance to see what they cover and for what conditions. It should just be a section in your policy that you can read.

IVIG is basically just gamma globulins (antibodies).
 
Posted by lymetwister (Member # 19590) on :
 
And I on the other hand had a 5 day course of IVIG and it nearly killed me. It sent me into a downward spiral that would take a year to come out of.

In the end, I don't think it did me a bit of good and I would never touch the stuff again.

Gary
 
Posted by canefan17 (Member # 22149) on :
 
Doesn't Xymogen have a product similar to this?

http://www.xymogen.com/2008/formula.asp?code=000019
 
Posted by sutherngrl (Member # 16270) on :
 
What Davidx said, that his body seemed to be attacking itself. Thats the way my body felt for the whole first year of my lyme treatment, where I had absolutely no improvement.

Then for reasons that would take too long to explain, I went on very strong steroids for 3 weeks. Don't know if you can compare steroids with IVIG; but basically I feel that it slowed down the attack on my body.

After that I re-started treating for LD and for the first time it seemed like the antibiotics started to work. 8 or 9 months into the second year of treatment I started improving. Now 2 years plus 1 month in, I am beginning to really see a big change.

I guess my point is that some of us need our immune system regulated either up or down. As bad as most ppl think the steroids can be, I believe in my case they helped regulate my immune system in the right direction.

Vitamin D, when it reaches a very high level......upper normal level around 80 to 100, acts also as an immune modulator.
 


Powered by UBB.classic™ 6.7.3