Hi All,

Some of you may be old-timers who know me, but I've not been on the forum in ages, so I may be a new face to most of you.

I had idiopathic sensory and autonomic neuropathy for years before I was diagnosed with Lyme, and did great with treatment. I made up the lizajane.org charts that people use to help navigate through diagnosis for neuropathy and Lyme.

Lately, I've had issues: fatigue, a finicky leg, odd stuff. But odd stuff has been my history, and nothing lasts and I generally end up doing ok.

Because of my recent odd stuff--when I get tired, my foot gets floppy--my neuro ordered some new tests, and the GAD65 came back very abnormal.

Can this not be awful news? Anybody here understand this auto-antibody enough to tell me something reassuring?

I do get IVIG, and I'm hoping that somebody whose antibodies were in the IVIG had this, and not me.

LizaJane

4554

Hi LizaJane

Glad to 'meet' you at last - I've been hanging around this place for about 18mths now and yours was one thread that gave me heaps of valuable information. A number of times I've either bumped it or shared the link with others so your legacy lives on . . . and kudos to MrsD who shared it with us in the first place.

Sorry to hear of your issues with GAD65 . . . and what a conundrum that it may be connected to the ivig therapy. Hope someone comes along soon to answer some of your questions.

For newcomers interested in LizaJane's original thread on Peripheral Neuropathy here's the link:

Neuropathy does improve

Welcome back, Liza Jane!

Just want to say thank you, I'm very grateful for your spreadsheets.

I don't have an answer to your query, but I'm sure someone will.

Hi there. That antibody is to test for autoimmune endocrine illnesses, mainly diabetes...but others as well. One involving thyroid I think. Here's a link with some info on it. I have autoimmune endocrine problems, so my doc runs this on me frequently.

GD65S - Overview: Glutamic Acid Decarboxylase (GAD65) Antibody Assay, Serum

--the GAD65 antibody has been found, unfortunately, to not be that specific a test.

Originally, clinicians were using it to test for susceptibility to Type I autoimmune diabetes, as it was an antibody with action against pancreatic islet cells. (I know I've had the test done by endocrinologists in the past with that reasoning.) But it has been found that there is a second, related islet cell antibody that is more predictive of that (IA-2) but not as commonly manifested. So, when autoimmune diabetes is suspected--and it can happen in older people, not just "juveniles"--autoantibodies to insulin are tested, as well, and of course blood sugar and insulin levels are closely monitored.

But these antibodies can be found, at somewhat lower rates (so, not as specifically), in a number of neuroendocrine disorders, from thyroditis to pernicious anemia to even sometimes Myesthenia Gravis or Lambert-Eaton syndrome or other dysautonomias. GAD 65 is generally seen at higher levels, if present at all, in patients with autoimmune encephalitis, myelitis, and stiff-man syndrome, than in people with neuroendocrine disorders.

The interpretation of all this is complex, though the Mayo Clinic site is pretty comprehensive:

GD65S - Clinical: Glutamic Acid Decarboxylase (GAD65) Antibody Assay, Serum

What were your titres?

And,yes, it is good to hear from you again, despite this.

Hi LizaJane,

I am one of the "oldies" and I do remember you.
I am glad to "see" you around, yet very sorry you are experiencing some additional challenges.

I often give the link to LizaJane.org to doctors, as well as to anyone suffering PN. I have had several doctors and PAs get back in touch and thank me for the link. I, in turn, thank you!

I do not have any info on "GAD65." I am happy to see others do have info to offer. I was signing in to do a quick search prior to a medical appointment and saw your post. Wanted to say "hi!"

Thanks so much for being You!
You have made huge contributions to this site/community.

With Love and Gratitude,
DejaVu

Hello LizaJane.
I am such a huge fan of yours. I have gotten so much useful information and inspiration from your posts. I wish I could give back to you now.
carol

Wow! It's so nice to know that people are still using the spreadsheets and reading things I wrote ages ago. Thanks for the thanks.

Glenntaj, you're still here, helping, turning complex science into something understandable. A born teacher. You've had the only explanation of the GAD which makes any sense to me. I read the Mayo piece, but could not digest it. I think I'm brain foggy. Well, I know I'm brain foggy.

So basically, I needn't get upset over this; it's not very specific, and even thought it's crazy high, (150, with normal <0.5) it doesn't mean much. I guess my neuro just didn't know what to make of the fatigue I've been experiencing, and how wobbly my legs get when I'm that tired. But I think it's a Lyme thing. Lots of people with chronic Lyme have periods of time when they're not able to walk at all. So getting floppy isn't a new disease; it's more same old same old. Lyme. The gift that keeps on giving.

Thank you all.

Hi Liza

I deal with Lyme also. Got it badly when I was a kid back in the 80's, went undiagnosed for over a year-doc finally figured it out because she was fresh out of medical school, and had just heard about Lyme (I'm in Jersey), and my parents carried me in because I woke in the middle of night unable to walk or move my legs. Scary for a 10 year old! Or anybody, obviously.

I do still deal with issues now being 36 years old, and most likely it is the reason I have a few autoimmune diseases and problems that keep popping up here and there. I've done several rounds of powerful antibiotics, but at this point, I think I'm about as "cured" as I can get. I still get weird "flares", and still take some natural stuff that is known to help.

I wish you luck-hope you continue to feel better and enjoy life. I know it can be a pain (literally and figuratively).

Glenntaj, any thoughts about the number being 150?