One of the ‘confusers’ about immune/auto-immune diseases is that …

March 6, 2010 at 10:01 pm

they’ve got to try treatments? If it walks like a duck..etc.? IVIG can work in either 40 or 60% of those treated with it. Depends on which research you read. For me? It was kind of a no-brainer?
Why? I was ‘borderline osteo’ and steroids could do damage, and I’d a family history of Cancers. So my ‘options’ were either Plasmapherisis or IVIG. After searching the web for hours, days and months? I determined that this essentially pasteurized/processed blood product was worth a try. You have to understand tho? That it might entail a life long commitment…insurance and other resources willing. So far? So good.
For me, testing was various nerve and muscle conduction studies done over a five month period; a sleep study [?]; heaps and heaps of blood work; MRI’s and CT’s with and w/o contrast of the entire spine and a spinal workup. I managed to avoid the nerve biopsy and the skin biopsies were not an option at the time I was tested [still in ‘research phase’] . I ‘aced’ all the requirements for treatment w/o the need for biopsy. I believe there are about 10 criteria for diagnosis, and if you meet 4-6 out of the ten? You’re in. IF anything is marginal or ‘inconclusive’? Then biopsies might be needed. I would NEVER do a full seural nerve biopsy[IMHO]. Many insurance co’s no longer cover them as they leave you super-prone to infection, and if the samples are not handled super-properly? They cause damage to some nerves you mite have left, and end up not proving a thing. The skin biopsies tho? I’d try that if you feel things aren’t conclusive. BUT ONLY THEN!
As for that instance of product failure? Once you learn that the controls resulting from that instance from the FDA thru to state and pharmacies now in place are soo strict? That failure to comply can cause an infusion facility to lose their licenses? And same for the pharmacies? The stuff is strictly controlled! I have no fears there. I actually reported one of substitution of one brand for another…that can be disastrous and it was for me.
For me? IVIG seemed the least invasive and most ‘organic’ way to go.
And, yes, IVIG does seem to be scary at first? But, think of it like this…it’s as much or more controlled than blood transfusions! Those who administer it are far better trained to do it than say ER nurses. And what’s put into you is far safer thru the product and process than most drugs for sure!
Yes it [I]could be[I][/I][/I] lyme’s but, if your doc is willing to give it a try? Go for it! I wish you luck in your diagnosis and that you do give it a try, most docs will do it for say..3 months? And write down how you feel about it all, before during and after. Any reactions at all, either call the doc or the IG manufacturer. Do a web search of Brand X ‘Prescribing information’ and read all about the side effects! Be aware of what are ‘red alerts’? And what is annoying. The annoying can feel like alerts at times. After the 10th time? It’s all BORING! But necessary if it works! Good luck and ask questions away. You won’t know if you don’t ask them. – homeagain
PS YOU[B]could[B][/B][/B] have both tho? Don’t write that off? But I sure hope you don’t!