Hello Foggy,I have a primary immune deficientcy--which is genetic disorder--and was known about before I contacted the borrelia in Germany
I found out about the PID when I was in my early 30's (though they started looking for it when I was quite a bit younger)-I'm just a wee bit older than that now (ha, ha, ha)
They use IVIG for moderate to severe cases of PID
Prior to contacting borrelia--I was always able to keep the immune system strong--thru a good, healthy lifestyle--alternative measures used to enhance the immune system, and thru using vaccinations( depends on which antibodies your body is not producing at normal levels) to boost b-cell maturity( My bone marrow produces enough b celluar matter--it does not "mature" appropiately) So they are not as efficient in doing their job as b-cells that mature correctly--that's a pretty simple explaination of a much more complex process.
I wanted you to know my history before hand--so that when I tell you that IVIG helps me--you will understand that I had a sub-clinical immune deficiencty prior to the fateful tick bite( nasty German tick)
Once the borrelia got "hold" of me-I never really stood a chance--since my immune response was never "normal" to begin with.
It's been hard to explain this to some LLMDs..or even other lyme patients--as they always believe it is from the Lyme--and therefore...once you get the infection under control....the immune system will "correct" it'self"
Well, I'm doing pretty well these days--and the immune system has "never corrected it'self"
Much to the "shock" of my previous LLMD
Good thing that I have the genetic testing to prove that this was aquired at birth--so they realize that they are looking at yet another type of borrelia patient--one that had an compromised immune response to begin with.
I've often wondered if there are more of us(CVID prior to B.B)--and have found a few others like myself out in LymeLand
So, yes...it helps me--and I know a "bit" about it--as I've gotten it for over 36 months' straight now.
Prior to the 36 mo. time frame--I would recieve it only as needed---usually after a bout of myco P, ect.
So, I'll tell you what I've heard about it from the Lyme perspective:
As the Hamptons' Boss (Doctor B.) stated in his protocol--if the immune system checks out as normal--it does not help really at all
Many B.B patients will suffer transcient IgG subclass deficiencties--also called Hypogammaglobulinemia--lower than normal levels of antibodies found in the blood
Many times the correct treatment of the infection will correct this situation
Sometimes it doesn't, and then testing with regard to immune status should be addressed--and the famous Doc states this.
Just using IVIG on a DX of Lyme--I was at one of the large conferences on TDB infections this spring---and the general conscensis--was that it doesn't help. (that may be just one groups' opinion)
Almost no insurance companies will cover IVIG on just a borrelia DX, either--whether you have positive testing, or not.
Now, if you are a lyme patient who presents as an MS patient--many times you can get the IVIG covered under that DX--and I have heard several lyme patients who present in this manner--feel that it helps their SX greatly
If you are to recieve IVIG on the DX of Chronic Demylenizing Polyneuropathies(CDP)--you may be able to recieve insurance coverage for this DX. And it is a well known, and excepted treatment modality for this condition--seems to work for everyone.
So far as the concerns following IVIG usage--yep, they are real--but there are not any recently known contamination problems( since late 80's,early 90's) so it's been over 15 yrs with no problems
Considering the CNN piece that I saw today about ice being contaminated with E.Coli in most restaurant ice machines that were tested--I'd say that just plain living might very well poise some of the same risks as IVIG
My IVIG comes thru CareMark--and they had me send them back a dosage that they felt may have come from the wrong supplier--there was nothing wrong with the product--and it still had to be destroyed.
One of the biggest problems is the patients' inability to withstand the side-efects of treatment--it can be a "herx" like no other.
But most of these can be resolved
But if you are immune deficient, like me--This is the way that I look at it:
I can possiably pick up something of an infectious nature from IVIG
Or,
I can just walk around with a severely deficient antibody production--and catch something that is capable of putting me "six feet under"
The choice was already made for me--I'll take my chances with IVIG.
And hope for the best.
[This message has been edited by yankee in black (edited 23 June 2005).]