My drs aren't sure if I have ALS but I have tested positive for fl1953. My latest EMG shows significant nerve loss but isn't entirely consistant with ALS.
My neuro refuses to prescribe ivig for me. He ordered some genetic tests (probably looking for the als gene) but if that comes back positive I'll never get ivig.
Has anyone tried ivig and gotten better?
Posted by joalo (Member # 12752) on :
Up.
Posted by karenl (Member # 17753) on :
sent two pms
Posted by showmemom (Member # 34213) on :
You would probably need to see an immunologist for IVIg. They would probably need to run you Ig subclasses and CD3, CD4, CD8, CD19 and natural killer cells to see if they are within range. If your b cells and t cells are out of whack, you will not be able to fight off any infection, including Lyme.
Posted by jwall (Member # 22999) on :
So would one qualify for IVIG with low natural killer cell counts, low cd4, cd8, etc counts? An immunologist prescribes this or can an LLMD? Does IVIG help with nerve loss?
Posted by Sammi (Member # 110) on :
I believe you do need to see an immunologist and/or have thorough testing done to get IVIG prescribed.
My Lyme doctor ran some basic immune function tests. When they were abnormal, I then saw an immunologist who did much more extensive testing over a couple of months.
I was found to have an immune deficiency, and I get IVIG once a month. From what I understand, you must be deficient to be considered for IVIG. It is extremely expensive and not without risks.
Posted by Rumigirl (Member # 15091) on :
Actually, you would be better off to see a LL neuro to test you to see if you qualify for IVIG for neuropathy, which you likely would.
The protocol of small-fiber neuropathy, or CDIP (Chronic Demyelinating Inflammatory Polyneuropathy) is higher dosage and more given more frequently, which you would surely need.
There is a sort of LL neuro in your state who evaluates for this and rx's it. You would definitely have to have insurance to cover it, however, as it is insanely expensive otherwise.