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» LymeNet Flash » Questions and Discussion » Medical Questions » small fiber neuropathy treatment recommendations?

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Author Topic: small fiber neuropathy treatment recommendations?
paleogal
LymeNet Contributor
Member # 45991

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Hello all. I was recently diagnosed with small fiber neuropathy (SFN). I underwent a battery of tests (haven't we all) to "determine" the cause.

Now, of course we know Lyme and mold and co can initiate SFN. (I had to introduce the PA to this fact with a couple of medical articles I pulled up during my appointment [dizzy] )

Long story short, I have no insurance-approved reason to have SFN. Thus, I cannot get an insurance-approved treatment for SFN, despite having evidence of having the condition. My Lyme and mold docs were hoping I could get IvIG out of this diagnosis.

So, since I can't get the *approved* treatment for a *diagnosed* condition because I don't have an insurance-approved reason to have the condition:

1. Has anyone had any luck getting IVIG for Lyme, and if so how did you do it?

2. Are there any other (herbal? supplement?) approaches to reversing the SFN damage? Is that even possible?

In reading about the effect of IVIG on SFN, I am really excited because it seems to really help POTS-like symptoms, which would be great to resolve. If no one has answers to #1 or #2, do I just give up on this entirely?

Thanks in advance [Smile]

Posts: 235 | From Southern Arizona | Registered: Jun 2015  |  IP: Logged | Report this post to a Moderator
Lymetoo
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Member # 743

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Get tested for auto-immune. I'm pretty sure they approve it for Sjogren's and others.

--------------------
--Lymetutu--
Opinions, not medical advice!

Posts: 95340 | From Texas | Registered: Feb 2001  |  IP: Logged | Report this post to a Moderator
Bartenderbonnie
Frequent Contributor (1K+ posts)
Member # 49177

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I receive IVIG monthly for the past 3 1/2 years for common variable immune disorder. But I started down the road you are on.

I had severe neuropathy from the waist down. Went paralyzed one morning in the bathroom, ended up in ER. Multiple Neuro docs. You must have had the nerve conduction tests, EMG and needle exam? Are they the most barbaric tests ever?
Electrical zaps and needle punctures to determine if it’s it painful, seriously? You are a trooper!

It’s very difficult to get IVIG treatment approved for small fiber neuropathy. Most insurances will refuse although some will consider a shorter course of treatment to access response. Only if your provider completes a peer-to-peer review with a physician at the insurance company. Good luck with that.

Here is a great link on Lymenet about IVIG and small fiber neuropathy;
https://flash.lymenet.org/scripts/ultimatebb.cgi/topic/1/57810?#000021

I pulled up at random, United Care’s coverage for IVIG treatments. Pertaining inf for you on page 27 (auto immune disease), page 28 (chronic Inflammatory demyelinating polyradiculone neuropathy CIDP), page 35 FDA approved conditions.

https://www.uhcprovider.com/content/dam/provider/docs/public/policies/comm-medical-drug/immune-globulin-ivig-scig.pdf

Here are studies showing Gamunex IVIG significantly improves CIDP in 24 weeks;
https://www.kumc.edu/Documents/neurology/1_Dr%20Barohn.pdf

By far, the best info I got for questions regarding IVIG were from the IV Living website. It covers all IV treatments. My questions mainly surrounded co-pay help on insurance but they have advocates and members that could probably help you.
http://www.igliving.com/
http://www.igliving.com/resources/connect-patient-support.html

Keep in mind, insurance companies, Medicare and Medicaid are trying to find ways to REDUCE IVIG treatments in patients
Maybe a diagnosis of CIDP might be better?

I will say since I’ve been on it, I have not had another attack of severe nerve paralysis. It does work. Good luck. Fight for it.

Posts: 2297 | From Florida | Registered: Nov 2016  |  IP: Logged | Report this post to a Moderator
   

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