[LizaJane]

Hi,

Many of you know me from my deep activity early on in my illness, my lizajane.org website, and my occasional posting of help and progress reports.

So, what was idiopathic peripheral neuropathy with autonomic involvement years ago is now generally considered lyme neuropathy. It only took 15 years to get there....but I did, which was the important part.

My neuropathy had originally improved when I cut back stress and devoted myself to supplement use. My overall health improved when I took one year of antibiotics for the lyme and ehrlichiosis, and herbs for bartonella.

But I still have neuropathy. My old neuro has retired, and his replacement decided at first visit that I should get a trial of IVIG. He is not a pn specialist, nor a lyme specialist, but his thinking was that anyone with pn for years and no diagnosis should get a trial of IVIG. It was absolutely no big deal to get it approved, which was a big surprise.

I have now had two full treatments, the first in hospital, and second at home, each for 5 days. My neurological exam has improved so much my neuro is very surprised, and has ordered and gotten approved 6 months of treatment. My friends and family note that I am walking at the same speed as everyone else, not asking folk to slow down for me, and I see I'm doing steps better. I can generally do two flights with no difficulty now. I also believe I've cognitively improved: a problem with "mis-speaking", saying incorrect words, seems to not be plaguing me.

On neuro exam, my reflexes are unchanged, but my strength is improved, my position sense has improved, and my gait.

I'm still taking a lot of supplements:

DHEA, acetyl L carnitine, adrenal support, Ubiquinol, lipoic acid, fish oil, Phosphatidyl choline, Vit D, and perhaps some others I'm not recalling just now.

I'll be away on vacation for a week, but I did want to get this up before I left.

IVIG: It's worth fighting for!

Best

[029anser]

very happy for you LizaJane

IVIG was a magic bullet for me as well...so far

[echoes long ago]

very happy to hear you are doing well.

[Wide-O]

Always happy to hear someone is doing well! But at the same time I am shocked at how long it took to go from "idiopathic" to "OK, it was Lyme".

How could they miss that for such a long period of time, causing you so much discomfort and distress?

[echoes long ago]

lyme diagnosis is a very contentious area of medical practice

[029anser]

lizajane

IVIG still working?

keep us updated on your progress

[Brian]

Really great news Lisa, I hope you have a nice holiday.