Autoimmunoreactive Iggs From Patients With Postural Orthostatic Tachycardia Syndrome.

[tommykazim]

Hi Issie, I'm interested in pursuing the autoimmune theory of POTS and hoping to get tested for the various dysautonomic antibodies. You mentioned you've tested positive. With that are you and your doctors keen to try you on autoimmune therapies if you havent already? It doesnt seem like doctors get too excited about a positive auto-antibody test in POTS to then whisk us off for treatment as say they would in Myasthenia Gravis? Do you know why this is? I dont imagine the healthy population have auto-antibodies and so it should be relevant if we test positive. A conspiracy?! Do they know that when we get better we will take over the world?!

[issie]

Tommy,

Other than the GastroCrom ---with the docs it's a wait and see. I have however, started on some herbals to support myself. I was on them before I started the GastroCrom. I've known about the positive antibodies for several months now. The IGG being low has been that way for over a year now. I guess the docs think there can be some false positives. (I've not really heard of false positives ---but, plenty of false negatives.)

Ha! We already are masters in "Our" world. The world of POTS. Let us get well and then see what we can accompish. You made me laugh! I needed that. Thank You!

Issie

[jangle]

I will admit I have not looked too much into Mast Cell yet, however one fundamental flaw with that theory is that it seems that MCAS presents with fluctuating intensity. There are flares as well as remissions, and these flares seem to be provoked by environmental stimuli. For myself, my symptoms are constant, and do not seem to be exacerbated by allergenic substances. Could there be a connection between mast cells and cytokines? Certainly, but I don't believe we'd be able to get more specific than just using the word, inflammation - which isn't helpful. Inflammation is probably the key and of course the obvious question what is causing the chronic inflammation.

I'll have to read more into autoantibodies and autoimmune illness in general. I posed an interesting question to my cardiologist - if this does turn out to be important in POTS, what specialty would treat it? Immunology or Cardiology? Autoantibodies attacking the heart. That's a tough one.

In neurology, it's predominately neurologists who treat MS, despite it being an autoimmune disorder. So it will be interesting to see what college of medicine takes it up.

[issie]

Well, the docs at Mayo who are treating MCAS are immunology and allergist. They are working closely with neurology. So, it's a team approach. The immunologist/allergy doc at Mayo is the one who did the IGG, IGM and IGE testing and determined autoimmune dysfunction. They also test things like pneumonia and do challenges (if you let them --I won't do the vaccine) to see if your body will respond properly and start making antibodies and have a proper response. If not then they would proceed with Hypogammaglobulin type treatments --usually IVIG or plasmapheresis. You can ask Arizona Girl about both of these --cause she has done them.

But, where there is over abundance of antibodies and you test positive to say --Lupus. A rheumatologist - actually treats that. He/she would also treat sojourns. So, it depends on what the problem is. If it's a thyroid antibody issue - an endocrinologist treats that. What ever organ is being affected ---that type doc. would oversee the care. Even though ---obviously ----there is a whole body dysfunction ---we are still separated into body parts and that's who we have to see for whatever ails us.

Issie

[jangle]

Well, the docs at Mayo who are treating MCAS are immunology and allergist. They are working closely with neurology. So, it's a team approach. The immunologist/allergy doc at Mayo is the one who did the IGG, IGM and IGE testing and determined autoimmune dysfunction. They also test things like pneumonia and do challenges (if you let them --I won't do the vaccine) to see if your body will respond properly and start making antibodies and have a proper response. If not then they would proceed with Hypogammaglobulin type treatments --usually IVIG or plasmapheresis. You can ask Arizona Girl about both of these --cause she has done them.

But, where there is over abundance of antibodies and you test positive to say --Lupus. A rheumatologist - actually treats that. He/she would also treat sojourns. So, it depends on what the problem is. If it's a thyroid antibody issue - an endocrinologist treats that. What ever organ is being affected ---that type doc. would oversee the care. Even though ---obviously ----there is a whole body dysfunction ---we are still separated into body parts and that's who we have to see for whatever ails us.

Issie

Ya that's what I was thinking as well, I did a preliminary talk with my cardiologist's nurse, and she said that an immunologist would treat that and that the role of the cardiologist would be to oversee the structural integrity of the heart. I told her to forward the question to the cardiologist. I'll see what he says, however from his first message, he basically told me to go to mayo so I'm going to guess his answer would be not cardiologists.

[tommykazim]

Yes Issie they arent far wrong with laughter being the best medicine, more pertinent for us when no other medicine works! If only my brain fog would allow for more of that laughter! I havent either read up on this mast cell theory. In the first 5 years of my 15 year illness I did have that episodic flushing phenomenon with dermographia though no GI upset and developed hayfever too?! My orthostatic tachycardia was much more prominent then, less so now, brain fog and fatigue are now in joint first place. Do you have flushing episodes? Have you noticed any improvements since being on Gastrocom?

Re the auto-antibodies can I ask which of the panel you tested positive to?

I want an autoantibody! For the purposes of a diagnosis that would be easier to explain to people and also hopefully more potential for treatment. I worry that if its not it may be a gene mutation which sounds harder to fix! I fear it may be the latter as my mother probably has mild POTS which came about in her thirties. There is a phenomenon in genetics called anticipation where the genetic condition passed on to the next generation then manifests earlier in life (me when 20) and with more severe symptoms - me!

However in autoimmune disease, which like everything is probably genetic too, I imagine patients will have varying severity of symptoms whether due to titre of auto-antibodies or other complexities and so perhaps auto-immune can still explain me! I'm seeing an immunologist next month but here in the UK on the national health system it sure aint easy to twist arms into tests or treatment!

[issie]

Nearly all the things that are showing up with me can be shown in my genetic profile. I did the 23&me and - just about all the things that are now flagging are potentially marked by genetics. Just because you have a marker for something with genetics - doesn't mean that it will trigger with you. But, things are happening in that direction. I learned an awful lot from my genetic testing and it gave me more clues as to what is going on. I do think that possibly autoimmune issues can be genetically explained too.

To answer one of your questions --yes I have flushing and pallor and breathing issues and shortness of breath, itching and some other things. Foods, stress, emotion, arousal and other things can trigger this. I have had symptoms of POTS since I was about 8 years old and that's as far back as I can remember to track things. I think it was triggered by a polio vaccine. Of course, EDS is something you are born with. Not sure if there is a connection - but some with intestional issues - there could be a connection with that too and MCAS. I had colic really bad as a baby. There are some theories out there suggesting that Endometrosis could be mast cell related ---I had that too. Lots of things can indicate a problem with this.

As for the gastroCrom ---I've only been on it a week. We will see what happens with time. I've had things that I thought was my miracle find and about 2 weeks into it - things go wonky on me. So, really it's too soon to be jumping up and down. The jury is still out. I will keep you posted on it.

Issie

[tommykazim]

Do you think the genetics of people with POTS will become a diagnostic marker even if it produces a number of subtypes? I'm not that clued up on genetics but your linking your genetic profile to your illness is that by a particular gene coding for a particular protein which if not working causes a specific symptom? Like the gene which codes for NET?

Yes there do seem to be many associations with POTS which I'm sure one day will make sense as to why they are.

Great you have had some response to the gastrocrom and yes I too dont get too excited unless positive effects last but long may they continue! Keep us posted. Have you tried anti-histamines too? I have in the past for hayfever but did not notice any other benefit from them?

[issie]

I think that is wishful thinking - but don't think it's impossible. 23&me is comparing people's genes against each other and what they know for sure with different illnesses and figuring out if you have a specific gene that could trigger and you could possibly get this certain illness. Things like Lupus, Kidney Disease, Thyroid disorders, Heart Rhythm disturbances, diabetes, neuropathies, illness that can be connected to mast cell disorders. It also will access possible genetics for brain hormone imbalances and illness connected with imbalance with those. It will tell you if you are a slow metabolizer or fast one. If there are mutations in liver function. You can figure out if there are problems with methylation pathways. There is a whole lot that you can learn from the test. It also will tell you what genotype you are. You can learn if you have genes for things like breast cancer, prostate cancer (for guys), and even alzheimer's. It's pretty interesting. Then if you download your info into promethease --you get even more info. It will tell you different meds that will probably work better for you than others. One thing you have to keep in mind with these genetic test ------Just because you have a positive marker for a certain type of gene that may go into some sort of illness -----does NOT mean that you will have the gene triggered and you will get the problem. It just means you are more pre-disposed to having the problem.

As for your other question on anti-histamines. I have been on those for months and seemed to be getting more brain fog and couldn't figure out why. I finally figured out (with the help of someone else here) that the Claritin seemed to be causing this. It wasn't making me sleepy - but, my brain fog was worse. My doc switched me over to allegra and zantac and added the GastroCrom and when all that is on board ---then we are to add a full strength aspirin. Many people with MCAS are taking more then one antihistamine a day - some as many as 3 a day of the H1's. He has us just on one a day of the H1 and H2's for now. The allegra, makes me more tired - but, isn't affecting my brain function and I've been told that in a few weeks that tiredness will get better. I'm hoping so. Instead of taking it in the day - I moved it to night. So, we will see what time brings. I think the different H1 and H2 are working better than what I was on.

Edit ----wasn't able to take the aspirin. That made me feel awful.

Issie

[tommykazim]

thanks Issie for the info on genes. Tempted to put mine under the magnifying glass even if just to blame my parents for my wonkiness, perhaps they will be a bit more understanding if not guilty! I'm broke though so until then they're scott free!

Interesting this mast cell angle, I dont know if its part of my pathophys but hopefully it'll explain it for some and the treatment will be effective. Aspirin interestingly for me keeps migraine aura at bay?! Anyhow back to the drawing board..