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Anti-ganglionic antibodies


Guest Belinda
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Guest Belinda

I didn't see any posts about this..I went and saw a neuro. actually the one that was there for my ttt

and he told me that it was just recently published in the New England Journal of Medicine about a

person that had severe POTS and was tested for these antibodies and they found them in him/her

and they did something similar to plasmaphoresis/exchange and within days the person was like 80%better

basically cured.

I know alot of you have researched things like this..and I did read the article I just wondered if any of you were tested for this?>??

I am being tested and my blood is being sent to Texas..and I am supposed to keep my fingers crossed

that I carry these antibodies.

The study is in: New England Journal of Medicine Steven Verino M.D. University of Texas

October Issue

So has anyone heard of this?

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hi belinda -

if you do a search for you'll find it discussed a few times on the board recently. the original thread is:

http://dinet.ipbhost.com/index.php?showtopic=3735&hl=plasma

myself and several others have tested negative. i only know of one person who tested positive and is receiving the treatment but she also has MG and other antibodies so there are other factors involved.

my docs actually are all in agreement that i have an autoimmune process (and thus an antibody) going on but that it just isn't one that's been pinned down yet. it's actually the only thing that dr. grubb, the docs at vandy & cleveland clinic are all in agreement with. thus even though i don't have the antibody in the article one of my docs has talked with me about still treating me as such - either with plasma exchange or with IVIG therapy; big hurdle there will be insurance payment, so he's trying to find some indicators of autoimmune response "somewhere" to help with the argument.

i know that i was sorely disappointed when my test came back negative as i fit the clinical picture pretty well.

<_< melissa

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here's traci's most recent update:

http://dinet.ipbhost.com/index.php?showtopic=4078&hl=plasma

....obviously we'd love to hear another but just thought i'd post this link in case you missed it.

i've been thinking of you & wondering how things have been going as well, traci.

<_< melissa

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Guest Belinda

Okay Thank you..I hope that me gettimg my blood drawn through University Hospitals will get it done right.

They are checking for the othere things mentioned in your post. I am sure I don't have MG but they are testing for it anyways.

Thanks again..guess I will keep my fingers crossed even though the outcome probrably in my luck will be not what I am loooking for.

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Belinda,

FYI, I was in the process of having my blood tested for anti-ganglionic antibodies, and Mayo did it wrong. They tested for Achr antibodies instead. (That test had not been requested.)

I came out positive to the Achr antibodies even though I do not have symptoms of MG. I'm pursuing that now. I have an appointment with an MG specialist in January.

So, as far as I'm concerned, the "mistake" in testing, opened up a new avenue for me.

I think it worthwhile to pursue as many causes as possible.

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Guest Belinda

I am looking through the orders now and I don't see the achr but maybe I am missing it..

Antiganglionic Antibody

EBV Panel-2nd one I have had , tested highly positive thought I recently had mono on the first one

ARTH,ESR

Anti-GM

Anti-MAG

Tsh-for the millionth time

Vitamin B-12

I sure hope this shows something I recently found out my red blood cells are high and now am going to be sent to hematologist next week. This is insane I mean I realize we need to see so many docs. but darn it

I wish one could just address evrything from POTS to Pooping toEsophagus to S>O>B>AARRRGGGGHHHH!!

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Belinda,

I think my red blood cells were high too, and I came out high on carbon dioxide in my blood but am not pursuing that because 1) I get tired of all the doctor's appointments with only a small hope of them understanding 2) I don't care about that stuff right now.

But, yes, this thing about WE are in charge of coping with the malfunctioning of different body systems and the doctors are only looking at the body part of interest to them, AAAAArgh!

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I, too, am curious as to why the docs' think you have an autoimmune response. I took my 16 year old to Dr. Grubb in Dec, along with the New England Journal article. We were ready to try plasma transfer...He said absolutely not, with her, as she did not have an autoimmune response, as some people do. He said she has what he is now categorizing as "developmental" POTS. (It came on gradually with her at puberty.) He said plasma exchange is like dialysis- takes a LOOONG time, and, it would not help her. I hope we hear updates on this soon...good luck to everybody...Joanie

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Guest Belinda
I, too, am curious as to why the docs' think you have an autoimmune response. I took my 16 year old to Dr. Grubb in Dec, along with the New England Journal article. We were ready to try plasma transfer...He said absolutely not, with her, as she did not have an autoimmune response, as some people do. He said she has what he is now categorizing as "developmental" POTS. (It came on gradually with her at puberty.) He said plasma exchange is like dialysis- takes a LOOONG time, and, it would not help her. I hope we hear updates on this soon...good luck to everybody...Joanie

Joanie- I beleive it is because I was always very athletic and healthy..and at one point I was tested for just regular mono antibodies and tested highly positive for them even though I never had mono I know many people can although mine ws unusual because I barely tested negative for the acute antibodies (like 2 pts.)

even though it was negative the doc. swore I had just recently had it.

The other thing is that I was on prednisone for a few months and as soon as I was weened off of it is when I could barely walk across a room and the orthostatic symptoms hit me oh and in this period I caught a cold and felt like death had warmed over me and I was going through some stress you could ssay I was sold my home and moved all in very short period of time and with prednisone I guess it lowers the immune system for quite some time after your weened off of it .

These are just guesses as I am just learning about all of this..I am 28 and this just started last Dec.

which in a way is hard but I know it takes lots of others years to figure out what is wrong.

Yes, I guess the plasma exchange can be tough but I at this point don't really care because if it could cure me I wqould do anything at this point..as I have two small boys.

I am just keeping my fingers crossed that I carry something that can be helped. Iwent today to get the blood drawn and boy did they have a hard time figuring out 2 of the tests he ordered. aNTI-MAG AND ANTI-GM??

i HOPE THEY DO IT RIGHT THEY ARE SENDING IT TO sTEVEN vERNINO IN tEXAS. i WILL LET YOU KNOWE WHAT HAPPENS....IF IT CAN HELP YOUR DAUGHTER I WOULD KEEP RESEARCHING IT.

tAKE CARE AND HUGS TO YOUR DAUGHTER..

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i think i've mentioned it previously, but like futurehope, my testing was also done incorrectly the first time. not sure where the breakdown was, but nonetheless. after i moved one of my new docs did it through mayo via cleveland clinic and we had the results within a week.

in terms of what/what i fit the "profile", i first want to reiterate that the NEJM study was only based on ONE person so obviously is not dealing with a large population. that said, though, my "profile" was very much that of the person in the study. actually closer to autonomic failure in many ways than POTS (i've been given a PAF diagnosis by one of my docs, still POTS by another...both specialists...doesn't change treatment though so they're agreeing to disagree). i have definitive neuropathy & an overall neuropathic "picture" of progression over a number of years. involving actual nerve damage and functional deterioration across multiple body systems including hypo/anhydrosis, gastroparesis & other GI dysmotility with severe weight loss at times, hypotension/OI, dry membranes (mouth, eyes), etc.

joanie - plasma exchange is far from a proven treatment at this point so i don't know any doc that would do it without some proof of an autoimmune response, especially in someone so young and with a fairly recent onset of symptoms (even if several years). i do NOT mean to sound as if i'm minimizing your daughter's struggles...i was there at her age so definitely understand...but just wanted to explain the technical side of things. there are a good number of people with the "developmental" type of POTS who - while maybe never able to stand in a line for 8 hours comfortably, recover to a significant degree. obviously not everyone, but a good number of teens. docs also will start to consider more experimental treatments when EVERYTHING else has been done with little success and/or with continued progression (that's where i'm at).

hope that helps,

:) melissa

p.s. future - i too have had elevated CO2 levels (all fall, amongst other things). very curious. i know you said you're not pursuing it, but did anyone give you any initial input on this?

Edited by Sunfish
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Sunfish,

No input. I go on the assumption that if the doctor doesn't pursue it or say anything, it means that he doesn't know much about it.

At one endocrinologist visit, I remember my bloodwork showed raised red blood cells, I think.

My endocrinologist (from Baltimore whom you know), did look and say something like, "very interesting, I'll have to ask one of my colleagues about it". (He may have been referring to a hematologist.) Nothing was done and he never asked anyone or told me anything.

Like I said, I'll have to be the one asking questions and pursuing answers. Many doctors do not have the time or interest. That's my take on it.

If YOU find out anything, let me know. I'll do likewise.

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Guest Belinda

Future and Sunfish...My doc. was a little concerned (pulmonoligist) that my red blood cells have been elevated along with hematocrit and hemoglobin, so this Wed. I beleive I will be going to a hematologist

to see what it all means I had further testing on the blood cells and will let you know what he has to say.

Boy, I will be really disappointed now if I don't have the antibodies. And plasma exchange is not that great??

Is it that it could be lethal or what? Don't understand?

Thanks for the input..Belinda

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Oh, no, I have never heard lethal. One Dr. told me that plasma exchange has been done safely for a very long time. I guess it is just uncomfortable (cold feeling- but sounds mild when compared to POTS symptoms) , takes a long time (many sessions) and , of course, is expensive. I think Dr. Grubb just meant that unless we had some reason to think that Lindz may have an autoimmune form of POTS (and he doesn't think that SHE does) it would NOT be something to do just to try. Sorry if I caused concern. Thanks for your responses- I wondered what would lead one to conclude that an automimmune response might be present in some and not others...Good luck, everybody! I still think this treatment sounds very exciting, if only for some. Joanie

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Hey guys..I talked to my doc. back in November about getting this test done..he was going to look into who we needed to send it to and what the procedure would be. I think he was going to look at sending it to TX or Mayo..

Belinda..do you know what the procedure was to send the bloodwork to TX? Did your doc. just contact Dr.V in Dallas?

I ask b/c I have an appt. with my doc. next week and want to get this done sooner rather than later..I'd like to go armed with info. in case he hasn't had any luck finding out who to send it to.

I did some research on plasma exchange and it's considered relatively "safe". They actually use it to treat a variety of disorders..even MS and RA..I was really surprised. I suppose it does take a long time and I'm sure it's expensive..but like you said Belinda..I'd give almost anything at this point to get some relief!

Happy New year Everyone! :P

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Guest Belinda

War Eagle as far as I know my doctor just wrote a script on Prescription Pad for the Anti-ganglionic antibodies (serum) and wrote down the address to send it to and gave instructiions that it had to be sent at room. temp.

I had it drawn at University Hosp. in Cleveland and they had to do some research on it , thye usually send them out to Mayo. but he wanted it sent to the Steven Vernino Lab in Texas.

Whether or not he called them ahead of time I am not aware he also tested for a few other things in which I am not aware of what for some I know ,some not.

I know if your doctor has read about this he will probrably call the Lab in Texas.

Goood Luck I will keep you all posted on what is going on with this.

Belinda

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  • 2 months later...

I went on Monday and saw a new specialist in order to get a second opinion. I really liked this new doctor and he just left me with hope that I will feel better again instead of this feeling of hopelessness I have after seeing my previous doctor. So anyway he had blood drawn and sent to the MAYO Clinic to be tested for this antiganglionic antibody. I'd never heard of this before and was kinda in awe.... those of you that have had the test done-- how long did it take to get results? Even if this test is negative, at least there are some proactive steps being taken.

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Dear Belinda:

I also read the article tonight and we were going to call the Texas hospital to find out. How did you get it set up? I have auto immune issues and this could be of help to me.

Who would you suggest I contact and do you have any phone numbers.

Thanks,

Stacie

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OLL,

My hematocrit (or was it hemoglobin or was it Red blood cells) was slightly high but I definitely do NOT have high iron. I've had four iron tests. Two are normal. Two are low, which the sleep doctor thinks contributes to restless leg.

I have a thought about the high RBC's? Could it be when I "force" myself to be vertical and the upper part of my body does not get the oxygen supply it needs, my body is forced to produce more RBC's to carry more oxygen to the brain? Just an idea.

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