Autoimmunoreactive Iggs From Patients With Postural Orthostatic Tachycardia Syndrome.

[HopeSprings]

I think this is new.

http://www.ncbi.nlm.nih.gov/pubmed/23002038

[arizona girl]

Interesting to see that the research continues. When I saw Dr. Grubb, he said that mayo had already found 5, and he expected that they would continue to find them. This research is stating they found 18, many of which interact with the cardiovascular system.

I wonder if they will add them to their current autoimmune panel for pots! I've always said a diagnosis of pots, is really just pointer and a start to the process of finding what is causing it. Many conditions can cause the symptoms of pots.

This why I consider it important to pursue diagnostics for underlying cause. What information that has made it out to the general docs that may only know just a little about a pots diagnosis if any at all, is that only young women get it and they will out grow it, and the best we can do is throw some salt, water and a beta blocker at them and they will be fine. Dangerous if you have a significant underlying disease state causing your dysautonomia symptoms.

This study flys in the face of that, because if there are autoantibodies, then the cause is autoimmune and only trying to manage the symptoms will at best control symptoms and not disease process. I say at best because there is much research currently being done on autoimmune disease and no cure has yet been found. That said there are many ways to manage autoimmune disease and hopefully keep it from getting worse. Unfortunately salt, water and beta blockers do not stop autoimmunity.

[jangle]

Interesting. I'd write more, but I gtg to work.

It is new though, it says it was published sept 24

[Mytwogirlsrox]

I would be really interested in knowing if any of these study patients with pots had positive anas or sed rates or anything to indicate a possible autoimmune problems in the first place. And the population was so small in this study, I think it's great that this study was performed, but 10 people?!? That can't represent us all! What if they chose only patients with positive Ana's? Regardless, im la they are investigating pots deeper!

[HopeSprings]

I would be really interested in knowing if any of these study patients with pots had positive anas or sed rates or anything to indicate a possible autoimmune problems in the first place. And the population was so small in this study, I think it's great that this study was performed, but 10 people?!? That can't represent us all! What if they chose only patients with positive Ana's? Regardless, im la they are investigating pots deeper!

Good point! How did they select these 10 POTS people? Did they all have some distinguishing feature or were they chosen at random. If they were randomly selected and all 10 were positive for these autoantibodies (but controls were not), that seems pretty significant, but definitely a larger study should be undertaken. And even if they just identified a sub-group, that's exciting too. The problem is these studies come out and then you never hear anything about it again.

[Mytwogirlsrox]

I wish we could have some sort of open forum q&a with researchers.

[issie]

Good find Naomi.

I do think so many of my issues are autoimmune and things are really starting to show up and point their fingers with me right now. So, time will tell. Just getting doctors on board with autoimmune directions . . . . . .

Issie

[diamondcut]

So what would they have given these people in the way of treatment in this study once they discovered this? Is it IVIG etc?

[issie]

There is also plasmapherisis and there are autoimmune modulating drugs.

Issie

[jangle]

well, it is true that the population size is small, however, this is further evidence that autoimmunity is implicated with POTS, which has been my major suspicion since this past July. This study will help me IMMENSELY in securing doctors on my side to pursue the autoimmune pathway.

[diamondcut]

Im exactly the same, my GP couldnt find an Immunologist Consultant that would be interested in me as they do not have a back ground in POTS. I mean please dont state the obvious!! So i emailed some myself that i tracked down and hay presto i await for an appointment!!!! Shouldnt be this way but its what we have to do. Do many other always pick up viruses when they go to the hospital or go for bloods ? This is why i think i could possibly have problems in this area.

[issie]

Okay, for people that want to know if Dr. Goodman knows about this study . . . .we will soon find out. Since it is a Mayo study but done in MN ----hopefully, he is fully aware of it. I talked to Janie today and she is inquiring. I know I have autoimmune things going on ----big time. So, we will see if there is something to be done or more testing to pursue.

Issie

[HopeSprings]

Okay, for people that want to know if Dr. Goodman knows about this study . . . .we will soon find out. Since it is a Mayo study but done in MN ----hopefully, he is fully aware of it. I talked to Janie today and she is inquiring. I know I have autoimmune things going on ----big time. So, we will see if there is something to be done or more testing to pursue.

Issie

Would be great if you can get more info on this. Let us know if you find out anything.

[issie]

Of course, I will post whatever I find out.

Issie

[jangle]

So if the class of autoimmune antibodies are IgG, then what treatments are available? I see IVIG treatments has had some limited success, but I've been looking around the internet and am having trouble locating IgG treatments. Probably something for an immunologist to answer.

[issie]

So if the class of autoimmune antibodies are IgG, then what treatments are available? I see IVIG treatments has had some limited success, but I've been looking around the internet and am having trouble locating IgG treatments. Probably something for an immunologist to answer.

There are a lot of herbals that can modify low IGG levels. One being astragalus. If you do a search on google it will pull up some others. I also saw that Vit C has an effect on IGG.

When it's extremely low they may use IVIG, as mentioned, or plasmapheresis.

Issie

[arizona girl]

Hey Jangle, I'm on ivig and have had plasmapheresis, both of which improved my symptoms. ivig replaces the missing or defective igg, it is almost all igg. I was low in igg and igm. The pheresis removes the antibodies from the blood so they can't attack you. IVIG is easier, though pheresis worked faster. I also got an infection and anemia during pheresis. My total quant immunogloblins are now normal but I require monthly infusion to keep them that way.

There are also some disease specific igg treatments like for lupus and chrones, I think.

BTW my autonomic function has improved by 80% I'd say. It took a while to get there though and I also am treating other autoimmune diseases too.

[Guest mattgreen]

That's terrific, Arizona Girl. Really happy to hear

[Angela]

I read this on another forum,

http://peoplewithme.com/thread-1097.html

hope that was okay to post. Was just interesting what CTD was researching

[issie]

I read this on another forum,

http://peoplewithme....hread-1097.html

hope that was okay to post. Was just interesting what CTD was researching

Anglea,

As your thread noted, Mayo clinic is doing that testing here. Some have found autoimmune issues as a connection with POTS and AcHr seems to be playing a role for some. Mestinon is usually a treatment that is tried when this is an issue.

Issie

[jangle]

I purchased the full text of this article, however it didn't really give any more details than the abstract which was disappointing. I sent the abstract to my cardiologist who then told me to go to Mayo clinic.

I'm going to see what my new neurologist says, but if it does just come around back to "go to Mayo" then I'm probably going to be waiting quite a while before I get anything going on this front.

Where is my Dr. House?

[issie]

Jangle, Hope you find your Dr. House. In the mean time you are educating yourself and ruling out other issues. It may feel like you're making no headway ---but, you are. For everything that is not found wrong ---brings us closer to what IS wrong.

One thing you might take a closer look at is MCAS. Dr. Goodman is treating us "hard to figure out" cases with the protocol for that. He has added GastroCrom to our list of meds. And Allegra and Pepcid. He wants us to also add a full strength aspirin. This is my first week on it, (and it's at a lower dose then RX'd - having to build up). So, here's hoping that those of us on it will find some relief and that it works for us all. I know of 4 people this week that he RX'd this to. I will keep people posted on my response. So far, so good. I am having some side effects --but, was told I would and it should settle out in a few weeks. The full effects should be noticed by 6 weeks.

You know, I have low IGG in the subset 1, and I've had positive antibody test in two areas. This is the direction that is being taken with me. Of course, I also, already knew that I had MCAS. Was doing the H1 and H2's but, adding the GastroCrom hopefully, will be the missing link. It is supposed to help with inflammation, and allergies. I can already tell that I'm not hurting as bad. I also was able to walk on my eliptical today - without too much trouble, and when I got off - checked my bp and hr and it was near normal. Yayyyyyy!!! Amazing.

Hang In There! Docs are starting to try some other things and hopefully, we will hit on the recipe that is successful.

Issie

[jangle]

Jangle, Hope you find your Dr. House. In the mean time you are educating yourself and ruling out other issues. It may feel like you're making no headway ---but, you are. For everything that is not found wrong ---brings us closer to what IS wrong.

One thing you might take a closer look at is MCAS. Dr. Goodman is treating us "hard to figure out" cases with the protocol for that. He has added GastroCrom to our list of meds. And Allegra and Pepcid. He wants us to also add a full strength aspirin. This is my first week on it, (and it's at a lower dose then RX'd - having to build up). So, here's hoping that those of us on it will find some relief and that it works for us all. I know of 4 people this week that he RX'd this to. I will keep people posted on my response. So far, so good. I am having some side effects --but, was told I would and it should settle out in a few weeks. The full effects should be noticed by 6 weeks.

You know, I have low IGG in the subset 1, and I've had positive antibody test in two areas. This is the direction that is being taken with me. Of course, I also, already knew that I had MCAS. Was doing the H1 and H2's but, adding the GastroCrom hopefully, will be the missing link. It is supposed to help with inflammation, and allergies. I can already tell that I'm not hurting as bad. I also was able to walk on my eliptical today - without too much trouble, and when I got off - checked my bp and hr and it was near normal. Yayyyyyy!!! Amazing.

Hang In There! Docs are starting to try some other things and hopefully, we will hit on the recipe that is successful.

Issie

Issie, I read the data from this article, the way the data supplement made it seem - everyone with POTS has autoantibodies. Whether they show up on other tests or not is becoming less relevant. I myself do have a positive ANA, but I believe these auto antibodies are specific to cardiac tissue, and so are not typically targeted by conventional blood tests.

[issie]

Hummmm. If that's the case then addressing autoimmune issues should work for everyone. But, docs don't want to address even things that are showing positive. I KNOW!!! They want to wait to see if it gets worse. My thoughts are, if it's bad enough to show up on a test and it gets worse and continues to show up ----you already waited to long. So, start supporting that part of your body NOW. I have started on herbals to address this. We already have positive markers for something to do with autoimmune issues. But, that is trickey too. Cause if you have over active immune response and you increase that response - you could make yourself worse. There is a fine line between having low IGG levels and having autoantibodies in addition to autoimmune issues. They can run hand in hand. I get a magazine every month that is on autoimmune issues. There is an article about that I think it was last month or this month. It's called I.G. (name of the magazine).

By the way GastroCrom works on inflammation and has an effect on TNF.

Issie

[issie]

Jangle,

Another thought ---mast cells can affect the heart too. You know I had that mast cell attack and had the ER visit. Learned later that the issue is called Kounis Syndrome. Mast cells are throughout your body and can affect well - nearly everything. What if the issue is over stimulation of them and that is setting off the autoimmune response? Mast cell activation disorder --isn't mastocytosis - where there are too many mast cells. It is an over response of the mast cells to who knows what triggers them - causing a degranulation and a dumping of the chemicals within them --histamine is only one thing they dump - there are other things too --bradykin being one. It has a direct connection to cytokines.

Issie