I just read an article in our local paper about a man who has this rare disease. It is an auto-immune disease which attacks the nerves and can upset a person's sense of balance to the point that walking is impossible.
Has anyone heard of this? Where can I get more info and, most importantly, information on treatment for this poor man?
One possible treatment is an aggressive form of chemotherapy, which is not always effective. This gentleman doesn't want this treatment, as it will compromise his immune system (do you blame him?!!) and put himself at risk for other diseases.
Btw - there was no mention of "Lyme' in the article, just this specific disease. I wonder if he doesn't have some sort of infection.........??
Posted by 'Kete-tracker (Member # 17189) on :
How the HECK did they come up with that mouthful? 'Anti-MAG IgM Periphrial Neuropathy'. Sounds like a real mix of terms. Nope... ne-va hoid of it. :-/~
Posted by hopingandpraying (Member # 9256) on :
I'm pulling this up as I really am trying to get help for this person.
Anyone?
Posted by sheltielady (Member # 42710) on :
Recently my LLND mentioned there's a treatment for Demyelination. I am waiting for my Igenix and other blood tests. I can hardly walk with my rollator. She told me about an IV LG6. I read about it, it seems to be successful with patients.
I maybe doing that if all goes well. I told her I would go thru my PCP. The insurance hopefully will pay for it. They have spent over $80,000 on all of my other tests....
Got try something..."In the light there is no darkness "
Posted by Keebler (Member # 12673) on :
- sheltielady,
If the demyelination is caused by lyme, lyme must be thoroughly addressed and treated, along with support methods. Other methods may help but if lyme is present, it cannot be overlooked in favor of band-aide approaches.
Still, some band-aide approaches can make a very nice addition to proper lyme treatment. Just be sure ALL the bases are covered.
sheltielady,
Is your LL ND ILADS educated? Be absolutely certain they are. Otherwise, they are not really an LL ND. -
Posted by Keebler (Member # 12673) on :
- Do you have some links for IV LG6?
I did an advanced Google search but find nothing of consequence regarding this conversation. -
Posted by Keebler (Member # 12673) on :
Topic: TINNITUS: Ringing Between The Ears; Vestibular, BALANCE ISSUES, Hearing with compiled links - including HYPERACUSIS -
Posted by seibertneurolyme (Member # 6416) on :
Keebler,
Pretty sure it was a typo -- IVIG is the standard treatment for neuropathy -- but insurance will only pay if an EMG test is positive.
I have always understood that that treatment is about 50 percent successful in lyme patients with neuropathy -- but as you say they also need to treat the lyme and any other coinfections as well.
Bea Seibert
Posted by Keebler (Member # 12673) on :
- Oh, Bea . . . thanks. Yeah, familiar with IVIG. Thanks. Makes sense. -