Dr Grubbs team ‘Strongly Suggests’ Autoimmunity in Dysautonomia

[Learner1]

The less‐frequent primary form of POTS (hyperadrenergic POTS) has been described as a form of β‐adrenergic receptor hypersensitivity with many of these patients experiencing true migraine headaches, including onset with photophobia and nausea.36

I have this situation, but only A1 and M4 antibodies. Do you suppose I have beta-adrenergic receptor sensitivity? I respond to beta blockers and cholinergic substances.

 

[Sushi]

I have this situation, but only A1 and M4 antibodies. Do you suppose I have beta-adrenergic receptor sensitivity? I respond to beta blockers and cholinergic substances.

Re: migraines and dysautonomia, I used to have them most every day but when I recently started Mestinon they have almost gone away. This drug should also be affecting acetylcholine.

pattismith said:

The less‐frequent primary form of POTS (hyperadrenergic POTS) has been described as a form of β‐adrenergic receptor hypersensitivity with many of these patients experiencing true migraine headaches, including onset with photophobia and nausea.36

https://www.ahajournals.org/doi/10.1161/JAHA.119.013602#jah34391-bib-0036

 

[Fogbuster]

If you've received positive results for certain auto-antibodies, will the NHS or any POTS specialists take celltrend results seriously?

 

[Learner1]

My neurologist, who specializes in dysautonomia, did. No idea if the NHS would.

 

[kangaSue]

Another paper in considering the relevance of these autoantibodies in POTS hypothesises proconvertase furin to be a biomarker for an autoimmune cause of POTS

https://www.frontiersin.org/articles/10.3389/fnins.2019.00301/full
Proconvertase Furin Is Downregulated in Postural Orthostatic Tachycardia Syndrome

Conclusion;
Proteomic profiling by proximity extension technique revealed an inflammation-specific biomarker fingerprint in POTS patients. Circulating levels of proconvertase furin are downregulated in POTS suggesting a complex and intriguing interplay between autoimmune activity and cardiovascular autonomic dysfunction.

 

[Gingergrrl]

If you've received positive results for certain auto-antibodies, will the NHS or any POTS specialists take celltrend results seriously?

My two main doctors took it seriously, in combination with my other autoantibodies, and it helped to form the larger clinical picture that everything, including POTS, was ultimately due to autoimmunity in my case. The insurance companies are another story and I do not know about the NHS.

 

[kangaSue]

Both ME/CFS and POTS have been found to involve an incidence of RAAS inactivation which may be in part due to Anti AT1R if that involves downregulation of angiotensin;
https://academic.oup.com/jes/article/3/Supplement_1/MON-LB009/5483493
https://www.sciencedirect.com/science/article/pii/S0914508716301204

 

[Learner1]

Not sure this applies to all of us. I have low aldosterone and high BP without medication. Fludrocortisone is not indicated for high BP.

Wonder how an ACE deletion affects any of this.

 

[Gingergrrl]

Anti AT1R if that involves downregulation of angiotensin

I tested as "at risk" for Anti AT1R (on Cell Trend's new panel last year) and I was 16.1 and positive was 17.0. I tested positive for their other newer POTS autoantibody, Anti ETAR, at 18.9 and positive was also 17.0... none of this surprised me or my doctor and if there is a new autoantibody, I will be positive for it

 

[kangaSue]

if there is a new autoantibody, I will be positive for it

It would be better for your health if you started collecting something more tangible, like antiques.....

 

[Gingergrrl]

It would be better for your health if you started collecting something more tangible, like antiques.....

That was very funny... and I couldn’t agree more!!!

 

[Marylib]

It's interesting that Nancy Klimas reports that 90% of her patients have POTS. In my case, I always had the orthostatic intolerance. Woozy, dizzy, poor blood flow to the brain kind of thing. But the actual tachycardia aspect got bad only about 9 years after my diagnosis. So maybe that is the autoimmune response kicking in.

I'm going to try isoprinosine again soon (got a cheap source from Poland). It was one of the things that brought me out of a crash once. It will be interesting to see what happens. And of course Dr. Chia's immune modulator Equilibrant works for some people too. The key is start low and go slow, from what I understand. Inosine never did anything for me, unfortunately.

We should all be so lucky as to take a long or permanent vacation in a perfect climate to see how much would resolve on its own. That is one of my goals, but so far I haven't been able to manage it. People who are diagnosed early have such a better chance at recovery. Bring on the biomarker for the young folks!

 

[Sing]

I had 10 out of 11 positive of the autoantibodies tested by Cell Trend in Germany. The 11th, I was « at risk » (very close to positive). However, I have not had POTS except for one very unpleasant episode years ago. Instead, my heart rate stays low and drops ever lower, often when standing or especially trying to walk at all uphill. So, I am still generally classified as having ME/CFS. Autoimmune neuropathy, CVID, SFN are other « labels ».

 

[Gingergrrl]

Instead, my heart rate stays low and drops ever lower, often when standing or especially trying to walk at all uphill.

Do you take a beta blocker or other med that might cause your heart rate to drop so low (or is it doing this on it's own)?

Autoimmune neuropathy, CVID, SFN are other « labels ».

Do you mean that these were given to you by doctors as other labels instead of ME/CFS or in addition to ME/CFS so that you now have 4-5 different diagnoses?

 

[Sing]

Do you take a beta blocker or other med that might cause your heart rate to drop so low (or is it doing this on it's own)?



Do you mean that these were given to you by doctors as other labels instead of ME/CFS or in addition to ME/CFS so that you now have 4-5 different diagnoses?

Do you take a beta blocker or other med that might cause your heart rate to drop so low (or is it doing this on it's own)?

No beta blocker or other heart rate lowering drugs


Do you mean that these were given to you by doctors as other labels instead of ME/CFS or in addition to ME/CFS so that you now have 4-5 different diagnoses?

Depends on the doctor. My neurologist and immunologist for example only use non-ME/CFS diagnoses. Another doctor uses the whole laundry list.

 

[pattismith]

Human leukocyte antigen associations in postural tachycardia syndrome.2019
Shin YW1, ...

1Department of Neurology Laboratory for Neurotherapeutics Biomedical Research Institute Seoul National University Hospital Seoul South Korea.2Department of Neurosurgery Seoul National University Hospital Seoul South Korea.3Department of Neurology Ajou University School of Medicine Suwon South Korea.4Department of Neurology Seoul National University Hospital Healthcare System Gangnam Center Seoul South Korea.

Abstract
Associations between human leukocyte antigen (HLA) and postural orthostatic tachycardia syndrome (POTS) have not been investigated. We included patients diagnosed with POTS and showing orthostatic heart rate increases ≥ 50 during orthostatic vital sign measurement or experiencing syncope/near-syncope while standing (prominent POTS; n = 17). DQB1*06:09 was present in seven (41%) patients, a significantly higher percentage than in healthy Koreans (7%; odds ratio [OR] 8.7, 95% confidence interval [CI] 3.1-24.3, corrected P = 3.2 × 10-4) and epilepsy controls (8%; OR 7.9, 95% CI 2.7-23.5, corrected P = 3.2 × 10-4). Six (35.3%) carried the A*33:03-B*58:01-C*03:02-DRB1*13:02-DQB1*06:09 haplotype.

The results signify an autoimmune etiology in prominent POTS

 

[pattismith]

I had high a1 and m4 antibodies. I am trying Rituximab on the basis of those results. From what i understand, the trials that were done did not select ME/CFS patients so specifically for autltoimmunity. I've talked with 2 doctors who believe Rituximab dies work snd has helped certain patients who had autoimmunity. Rituximab doesn't necessarily help every patormts for the on label autoimmune problems its approved for. So, it's a matter of trying it on autoimmune patients and then a little bit of luck on top of that. I've taken other drugs that don't work on everyone either...

by the way, do you know if ritux is working for your dysautonomia, and if your antibodies went down?

 

[Dakota15]

For those who know more than me, if autoimmunity is the underlying mechanism for POTS (or for a large subset), IVIG would be a possible treatment modality, no? (I know this is a broad question but just curious)

 

[kangaSue]

For those who know more than me, if autoimmunity is the underlying mechanism for POTS (or for a large subset), IVIG would be a possible treatment modality, no? (I know this is a broad question but just curious)

https://www.healthrising.org/blog/2...c-fatigue-syndrome-me-cfs-pots-success-story/
https://clinicaltrials.gov/ct2/show/NCT03919773

A combination treatment;
https://casereports.bmj.com/content/casereports/2018/bcr-2017-221405.full.pdf

 

[Learner1]

For those who know more than me, if autoimmunity is the underlying mechanism for POTS (or for a large subset), IVIG would be a possible treatment modality, no?

Yes, that is part of why I'm on IVIG. I'm also on it for autoimmune MCAS and immunodeficiency.

do you know if ritux is working for your dysautonomia, and if your antibodies went down?

Given @Gingergrrl's experience with retesting antibodies and the fact I'm still on IVIG, I'm not planning to spend the money to retest antibodies. Symptom improvement is what I'm looking for. I've been on Rituximab for 5 months, about the time I may start to see results.

I can't for sure say it's working, but since I started, I have been able to discontinue 3 MCAS meds and just take quercetin and occasional benadryl and have normal MCAS test results and though I still take a beta blocker and Huperzine A, I am able to stand for 20 minutes without being dizzy and my ability to exercise without crashing has improved - I can walk 3-5 miles slowly or lift weights for 30-40 minutes or paddle a boat slowly, with some rests.

I still crash with a minute of aerobic exercise or anything with intensity, like squats, lunges, jumping jacks, etc. and my heart rate spikes, so, the true test will be if I regain this function without my heart rate going nuts.

The plan is to continue Rituximab for 3 more treatments 3 months apart.