Results of the German Cell Trend laboratory for POTS

[Pearshaped]

@andyguitar yes he said that and in fact he seemed pretty convinced that I was positive for many of the antibodies.So we were both surprised with the results.

Anyway someone here on the forum told me he/she did it and it didn‘t help.And this person spoke to people who took part in the study and it didn‘t help them either.

And since the controls were often positive for these antibodies,I wonder if Dr Edwards was right when he once said he doubted if these antibodies were pathologic.

 

[andyguitar]

ps2: i felt extreme improvement 4th day after 2g/kg IVIG so from what i read, so fast it cant lower antibodies (would take weeks at best) or recover small nerve fiber (months), but i had no orth.intolerance after 4 days, and extremely clear brain etc, so i concluded it stabilized maybe MCAS

When you had the IVIG did they give you any drugs? Like a pre-med? If they did I wonder if that is what led to the improvement. Just a thought.

 

[andyguitar]

Anyway someone here on the forum told me he/she did it and it didn‘t help.And this person spoke to people who took part in the study and it didn‘t help them either.

But just because it did'nt help them does'nt mean it would'nt help you.

 

[Pearshaped]

thats true,you never know.
but according to my doc the treatment is out of question anyway.

 

[pattismith]

And since the controls were often positive for these antibodies,I wonder if Dr Edwards was right when he once said he doubted if these antibodies were pathologic.

In some papers I read, these antibodies are discussed as possibly having some physiologic action, so their contribution to pathology is not fully elucidated.
It may be that they have a physiologic regulatory role, but can be dysregulated in some pathologies.

 

[pibee]

When you had the IVIG did they give you any drugs? Like a pre-med? If they did I wonder if that is what led to the improvement. Just a thought.

no they didnt wish something cheap as steroids or antihistamines has so powerful effect, but it doesnt

one suggestion was volume expansion but that makes no sense either because for me highly specific more psychiatric or cognitive (dyspraxia) symtpoms were gone immediately which has nothing to do with volume of blood

it could be IVIG binds circulating autoantibodies, from little googling i did but even more i think my response matched MCAS stabilization

i also developed art talent after IVIG, as funny as it sounds. Well that started already before it with thyme oil somehow changing my brain, i noticed i suddenly can draw people, my visual processing was changed.
but then it was only 1-2x time a month thing when my brain could work enough for that, and then about 6 months after IVIG i suddenly started to be able to paint 8hr a day.
I never had any talent for it, although I had big interest in art but i felt "blocked" because i had fine motor skills problems and visual processing problems ...
I have some pediatric CNS disease that responds to antibiotics and immune modulating drugs. :/

 

[sometexan84]

@sometexan84 This is one of the threads re: Cell Trend Labs in case it is helpful for you (and just disregard this tag if it is not ).

My results should be coming back soon, I'll be sure to share them.

 

[mitoMAN]

Does anyone have links to studies that indicate successfully IVIG use for these Autoantibodies?

 

[Learner1]

Does anyone have links to studies that indicate successfully IVIG use for these Autoantibodies?

"IVIg therapy in autoimmunity and related disorders: our experience with a large cohort of patients - PubMed" https://pubmed.ncbi.nlm.nih.gov/160...ed,which explains its immunomodulatory action.

"Intravenous Immunoglobulin in Autoimmune Neuromuscular Diseases | Cardiothoracic Surgery | JAMA | JAMA Network" https://jamanetwork.com/journals/jama/fullarticle/198740

"Mechanisms of action of intravenous immunoglobulin in autoimmune and inflammatory diseases - PubMed" https://pubmed.ncbi.nlm.nih.gov/12798851/

"therapeutic uses of intravenous immunoglobulins in autoimmune rheumatic diseases | Rheumatology | Oxford Academic" https://academic.oup.com/rheumatology/article/41/4/367/1788074

"Autoimmune and Chronic Inflammatory Diseases" https://www.hss.edu/newsroom_hss-st...ne-chronic-inflammatory-disease-treatment.asp

 

[mitoMAN]

Thank you learner. I was referring to the POTS specific ones - as I have the b2 and m2-AR AAbs and need to quote successfull studies or case reports for these exact AAbs to apply for IVIG insurance coverage.

 

[sometexan84]

I am surprised they don't have an option for Alpha 3 ganglionic acetylcholine receptor autoantibody (a3-AChR Ab).

This antibody is mostly tied in to Autoimmune autonomic ganglionopathy, a "rare" disease. But ME/CFS is a rare disease. It fits in quite well w/ the symptoms. And I've seen multiple people in this forum mention positive results to ganglionic receptor.

My Cell Trend results will probably come back in a few days. But I'm supposed to get my results back for these Ganglionic AB on 1/8/21 (had to convince the doc to do the NeoComplete Paraneoplastic Evaluation with Recombx® from Quest). I just would be surprised at this point (and disappointed) if they came back negative.

 

[sometexan84]

Well, my Paraneoplastic panel came back early. Negative for everything, including Alpha 3 ganglionic acetylcholine receptor autoantibody (a3-AChR Ab).

Very disappointing... but at least I know I probably don't have cancer. That is always a plus.

 

[sometexan84]

Results back.

Only a single positive...

Small Fiber Neuropathy it looks like.

 

[wigglethemouse]

Small Fiber Neuropathy it looks like.

Just FYI in case you were not aware. Several places now offer skin biopsy testing which would help confirm SFN
Therapath : https://www.therapath.com/services/small-fiber-neuropathy-testing/
Mass General Hospitals : https://neuropathycommons.org/get-tested/skin-biopsy

Thanks for posting - interesting to see Cell Trend now offering a blood test.

 

[sometexan84]

So you do this biopsy yourself?

OMG, I'm just now remembering that I had carpal tunnel syndrome

 

[wigglethemouse]

So you do this biopsy yourself?

A dermatologist would be someone capable of performing the biopsy.

 

[mitoMAN]

Results back.

Only a single positive...
View attachment 41255
Small Fiber Neuropathy it looks like.

You might want to check out ARA-290 then.