LymeNet Flash: IVIG

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»	LymeNet Flash » Questions and Discussion » Medical Questions » IVIG

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Author

Topic: IVIG

Splashi1
LymeNet Contributor
Member # 28173

posted

I have peripheral neuropathy with a lot of pain. I have seen a neurologist, locally, but she will not prescribe IVIg.

My LLMD has suggested that I see a neurologist who he knows might be more willing to be open to it, but that neurologist is 200 miles away from me and I'd be travelling into a major metropolis.

I would prefer to consult with someone in my neck of the woods, because I don't think I can handle that stressful journey at the moment.

I am in MA, so if anyone knows of a forward thinking neurologist in this neck of the woods, I'd be super grateful to hear about them.

I am also interested to know whether these are infusions you can do at home. I am assuming not, but I suppose it's possible.

I have also heard that there are side effects, but I'm assuming that the risks of them outweigh the benefits for those that undergo treatment. Can anyone tell me what the potential risks are?

I am wasn't sure where to post this, so I put it here since I also have other questions not related to "finding a doctor"

Thanks for any feedback!

Posts: 141 | From East Coast USA | Registered: Sep 2010 | IP: Logged |

Marnie
Frequent Contributor (5K+ posts)
Member # 773

posted

See this link:

http://flash.lymenet.org/ubb/ultimatebb.php/topic/1/129783

I listed (linked) the potential dangers and a POSSIBLE solution.

Also re: peripheral neuropathy...

http://umm.edu/health/medical/altmed/supplement/vitamin-h-biotin

and other "legit" links.

Google this: biotin peripheral neurophathy

Posts: 9432 | From Sunshine State | Registered: Mar 2001 | IP: Logged |

smiles132002
LymeNet Contributor
Member # 7949

posted

I just started IVIG again after being off for two years. It really helped me a lot the first time. I used Privigen (both times). I did 3 days over a saturday, sunday, monday and then the following sunday all day. The first infusion was supposed to be 5 days in a row but due to work and my long infusion time I had to break it up.

I can't go over a rate of 60. I have been feeling more tired and numbness and tingling then normal. I also have had a fever of 99 on and off since the infusion and I'm not sure if it's related. I also have been so tired, falling asleep without sleeping meds and then waking up with numb arms, but too tired to get up.

Has anyone else experience this?

Posts: 484 | From Burlingame, Ca | Registered: Sep 2005 | IP: Logged |

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