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» LymeNet Flash » Questions and Discussion » Medical Questions » IVIG infusions- any personal experiences?

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Author Topic: IVIG infusions- any personal experiences?
SashaC
LymeNet Contributor
Member # 18968

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Hello,

I made an appointment with a neurologist today, and I noticed that he has an IVIG infusion center in his office.

I have read of Lyme patients on this board that are receiving IVIG treatment.

I've googled it, but I'm still a bit unclear on what it does for Lyme.

Has anyone had any positive results from IVIG? What exactly is it supposed to do? Does it make you feel markedly better? Do I need an order from an LLMD to try it?

Would anyone mind please giving me a quick rundown of what it is and how it works? (Sorry for all the questions)

I am interested in it since I now have access to receiving infusions, and I'll try anything that may possibly make me feel better than I do now!

Many thanks [hi]

Sasha

Posts: 151 | From SW US | Registered: Feb 2009  |  IP: Logged | Report this post to a Moderator
nybasketball212
LymeNet Contributor
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Was this in Connecticut by any chance?
Posts: 306 | From NY | Registered: Sep 2010  |  IP: Logged | Report this post to a Moderator
SashaC
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Oh no, much farther away!
I'm in Texas...but we don't have Lyme down here... [Roll Eyes]

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Amanda
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A friend of mine did these treatments.

The IVIG is IV immunoglobulins. It is very expensive. You have to have low immunoglobulins in order to get this, not only due to expense, but it is hard to come by, so they reserve it for those that really need it

She said it made her feel worse (since it increases activity of your immune system). So if you go this route, request to start at a lower dose.

In the end for her, it didn't help all that much. The effect was very short lived.

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"few things are harder to put up with than the annoyance of a good example" - Mark Twain

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Neil M Martin
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I've seen tantalizing reports of IVIG curing LD. 8/19/99 to 5/10/99 I had 11 IVIG treatments: 1 gm per kilo body weight for chronic Guillain Barre syndrome (CIDP).

IG gave immediate if partial & temporary gains in strength. But full blown relapes always followed. Then I was Lyme-diagnosed and began IV antibiotics 5/17/99. IV antibiotics for lyme enabled me to gain more-steady strength and aviod crashes into deep paresis that prompted my hmo to offer ivig.

The hmo would NOT change its CIDP diagnosis, admit I had Lyme or offer IV antibiotics. I wonder if both IVIG and antibiotics, or more heavy doses of IG, would have been helpful.

Neil

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Neil

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dsiebenh
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I took this via IV weekly when I was an MS patient. At the end of the year I found out the practice was making a lot of $ off of me and it seemed to me like that was their primary concern, not my well being.

At one point the nurse said "the business manager said to treat you like gold because you are worth a lot of $ to this practice." That's when I decided to find out what the docs were putting into me.

IVIG did nothing for me but I was taking it at the same time as I was injecting interferons - so on one hand I am boosting the immune system, and on the other toning it down.

At the end of the year I quit both and began the odyssey that led me to Lyme.

As I recall that year of IVIG cost the insurer $75k. Then another $25k for the interferons.

Profit seemed to be the prime motivator of the "Alternative Medicine" practice I attended.

Posts: 252 | From NJ USA | Registered: Mar 2004  |  IP: Logged | Report this post to a Moderator
   

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