More Autoantibodies In Pots

[ramakentesh]

A small cohort and a few other issues but of interest:

http://www.ncbi.nlm.nih.gov/pubmed/23562385

Autoimmunoreactive IgGs against cardiac lipid raft-associated proteins in patients with postural orthostatic tachycardia syndrome.

[HopeSprings]

Wouldn't it be nice if they found the autoantibodies, a blood test for it was made available, we all test positive, and they have a medicine to cure or treat it? Am I being overly optimistic?

[sue1234]

I second that, Naomi! My first thought when reading this, and the fact that it came out of Rochester, was the teen program for POTS patients at Mayo. They more or less push them to do daily activities, and then they tell their parents to push them too. Things like this article make that program and other things we've heard from physicians look and sound so ridiculous. We've all known, as patients, all along that something "took over" our health and we could not explain it. It wasn't that we just up and decided not to exercise, or that we up and decided to put ourselves on bedrest and/or sitting in our house for months or years. We had a REAL problem that stopped us in our tracks, and they are just touching the tip of the iceberg to find it. I hope it is found soon, so that we can get some normalcy back in our lives.

This is the second article to come out from them suggesting autoantibodies to the heart. At some point, I wonder, does that give us a legitimate, insurance-approved reason to try IVIG or something else to try and clear the antibodies?

[dkd]

There is no cure for autoimmune diseases, so even if this is found to be autoimmune, at best we could take immunosupressive drugs which have problems of their own.

I have a close friend that has Crohn's and Sjogren's and has to inject herself twice per month with Humira, take a daily drug that was meant as a chemotherapy drug, and she still has problems.

I don't know, I guess I'm being pessimistic

[ramakentesh]

Don't even get me started on the 'push your kids to pretend they are well' pseudoscience. The hypocrisy of their own paper suggesting physiological mechanisms and then - without any evidence whatsoever - that 'chronicity of symptoms is the result of patient somatic hypervigilence and symptom catastrophising'.

I wonder if ms patients stopped thinking about their symptoms whether they would go away? Does neuropathy cure itself when ignored? Does aldosterone rise and cardiac mibg miraculously improve?

perhaps diabetes patients should stop their insulin and avoid thinking about their disease?

and ofcourse there is not one testable objective piece of evidence that can be measured that even supports the argument that pots has a psychogenic component other than the kids whose parents force them to pretend they are well.

[jangle]

Don't even get me started on the 'push your kids to pretend they are well' pseudoscience. The hypocrisy of their own paper suggesting physiological mechanisms and then - without any evidence whatsoever - that 'chronicity of symptoms is the result of patient somatic hypervigilence and symptom catastrophising'. I wonder if ms patients stopped thinking about their symptoms whether they would go away? Does neuropathy cure itself when ignored? Does aldosterone rise and cardiac mibg miraculously improve? perhaps diabetes patients should stop their insulin and avoid thinking about their disease? and ofcourse there is not one testable objective piece of evidence that can be measured that even supports the argument that pots has a psychogenic component other than the kids whose parents force them to pretend they are well.

The author who suggested hypervigilance and symptom catastrophising didn't know about the paper published by the other Mayo clinic group. When I was emailing him, he told me that there was only antibodies found against nerves in some POTS patients, when I showed him the study published by Mayo about autoantibodies to the heart, he got back to me saying that wasn't around at the time of his publication and he personally just had a conversation with Dr. Low who told him the role of those autoantibodies were unclear.

Anyways, this is interesting, but the only viable treatment for an ambiguous autoimmune disorder at this point would be IVIG or plasmapheresis.

Which IVIG isn't too bad, it's just expensive. Very expensive. If they have a clinical trial that pays for it, I'd be interested in joining it.

Heck, maybe I could start a clinical trial :D

[sue1234]

I wish you could, Jangle! It would be nice to not have to wait until you finish medical school to do it!

[arizona girl]

Well, plasmapheresis is expensive too! I'm on ivig approved by insurance for low immunoglobulins. My neuro Todd Levine had wanted me on it for small fiber neuropathy as skin biopsy proved that and I had proven autonomic dysfunction. When insurance didn't approve for sfn I was put on pheresis and did improve. Pheresis is hard to stay on long term, but in some ways I responded faster. IVIG or subq is easier long term but took longer to get the same results. I was on high dose ivig and we have reduced down to one day a month. I am still on a higher amount then a classic cvid patient. Oh we didn't know I had cvid until I got an infection during pheresis. Then I was approved for ivig.

I recently showed Doc Levine that study about fibro patients being found to have sfn on skin biopsy. He said I've always thought much of fibro was really a small fiber neuropathy. I asked are there any clinical trials with ivig yet? He said that there was discussion on doing it. Their practice is a research site doing trials with als and ms and other neuromuscular disease. So, if any group might do a clinical trial on this, they would be equipped to do it.

ASKING YOU ALL TO KEEP DR. TODD LEVINE, neurologist, IN YOUR PRAYERS! He is on medical leave for three months, he is having pancreatic surgery due to severe pancreatitis. It is a difficult surgery and he is such a good doctor and broad thinker. I'm praying that the healer gets healed, so he can keep helping his many very ill patients, many who are much worse then I.

Jangle, we will take what ever you can do when ever you get to the training level to do it. I wish you well as you go through the rigors of medical school with dysautonomia on board.

Maybe you could get the researchers past their own particular research theory bias, so they are open to seeing a competitors theory even if it negates their own. That is one advantage we DINET forum members have. We see so many coming here mostly due to the high heart rate, but as we see there are so many different reasons for the why/cause. I think we get to see the bigger picture here, whereas researchers have to narrow focus in order to prove a particular hypothesis.

There is a lot of just plan old common sense seen here.

[Zap]

Love the fact that these articles keep popping up. It shows that there is serious research proceeding AND that what many have believed to be true (autoimmune etiology), is in fact likely to be correct.

Obviously the treatments for such things leave something to be desired, BUT they do have to be better than having nothing at all (which is what some of us currently have).

[issie]

One other possible autoimmune thing is LDN. Not expensive and has helped some. (Although, my side effects were a little too great for it. But, may try again at a lower dose - later.)

Issie

[looneymom]

Keep the research articles and studies coming.

[Guest mattgreen]

From what I understand the mechanism by which LDN works is anti-inflammatory. So what may be great for MS sufferers is of little use to those who suffer an AI disease with no runaway inflammation.

[issie]

From what I understand the mechanism by which LDN works is anti-inflammatory. So what may be great for MS sufferers is of little use to those who suffer an AI disease with no runaway inflammation.

It is also being used for cancer and some other illnesses. More then just inflammation. Being used for a lot of things considered autoimmune in nature - lupus is also included in that. It does help pain - that is for sure - it helped my pain. But, my main focus of use was for autoimmune reasons.

Issie

[issie]

Here's one paper I pulled up on LDN ---there are many.

http://www.ldn4cancer.com/techpapers/ldn_for_disease_prevention_quality_of_life.pdf

Issie

[Katybug]

I really wish that they were running these studies on significant numbers of POTS patients and controls. I am a total believer that there is an autoimmune component to our illness. But, it's hard to make other docs believe that when the number of participants in these studies are so small. It's not like there aren't enough of us out here. I would gladly give another vile or two of blood for this cause.

[sue1234]

Exactly, Katie.

[Relax86]

Tonight I'll stop thinking I'm an amputee and maybe tomorrow I'll wake up with 2 legs again. Trying to push myself - hehe. I'm a way better amputee than I am dysautonomia patient. Honestly, how can you not constantly think about symptoms of POTs - it's every day, all day. It is nice to see new potential findings.