minoucat
Frequent Contributor (1K+ posts)
Member # 5175
posted
Several people on Lymenet have taken/take IVIG (intravenous immunoglobulin). If you search on that term you'll find good info. Also look for posts by Oxygenbabe on this topic.
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dmc
Frequent Contributor (1K+ posts)
Member # 5102
posted
just went to a llneuro to investigate this and the new IV abx Tigecycline. Didn't get much info yet...he spent whole time on history& exam. Have to go back in few weeks.
Thanks Painted & Mino for topic. Will do search here on Minocats advice to learn before I see LLneuro again.
Posts: 2675 | From ct, usa | Registered: Jan 2004
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posted
My husband has completed three courses of IVIG (intravenous gamma globulin). He gets it for two days once a month.
The IVIG has stopped the horrible pain he was having in his legs and the muscle wasting. He is starting to build some muscle and also has some energy back.
IVIG is very expensive and you usually need a neurologist or rheumatologist to recommend it for neuropathy (there's a specific condition, don't remember off the top of my head) or myositis (which is what my husband has).
If you are talking gamma globulin injections, it will be a lower dose and, of course, correspondingly less expensive. If you can get gamma globulin injections, I would try it.
Posts: 984 | From San Diego | Registered: Nov 2006
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posted
Parisa - how much do Gamma Globulin injections cost and by whom are they administered? How often are they given?
Do you also need a neurologist's diagnosis to obtain treatment or will a LLMD's do? Are the shots as effective as the intravenous method?
My son's LLMD highly recommends he get IVGG but it is prohibitively expensive ($15,000 per month) and our insurance will not cover all of it. Simply put, we cannot afford it!
Posts: 8945 | From Illinois | Registered: May 2006
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posted
I don't know how much gamma globulin injections cost. Quite a bit less than IV gamma globulin. I believe Oxygenbabe does gamma globulin injections. Maybe she'll answer for you.
As far as IVIG, it's at least $10,000 a pop. That's why you have to go to the big gun doctors to get it authorized. Depending on what your son has symptom-wise, he'd need a neurologist, rheumatologist or immunologist to recommend.
Posts: 984 | From San Diego | Registered: Nov 2006
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I had developed CIDP Chronic Inflammatory Demyelinating Polyneuropathy as a consequence of years of untreated lyme and co infections. Much neuro degeneration continued to increase despite aggressive IV and oral abx treatment.
I had symptoms consistant w/ ALS including muscle wasting, nerve degeneration both on the peripheral level and organ systems.
The CIDP was confirmed to meet my insurance co needs with an EMG study.
I have 4 infusions of IVIG per month. It is very expensive therapy and it took me 21 months to get insurance approval.
Since starting IVIG, tremors have stopped. Muscle wasting is over, paralysis is healing, lung and GI functions are normal. Seizures are rare, and I now longer need anti-seizure meds.
Last year I was dying. This year I am healing and rehabing.
I wish everyone who would benefit from IVIG could easily obtain it.
Posts: 663 | From NH USA | Registered: Sep 2004
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