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Hannah_mariet13

Immune System And Pots

11 posts in this topic

Hi, i'm new here

Well, here is my story.I was diagnosed with POTS about 3 years ago after having mono. The first year was a bad one. I also have asthma. I tried many beta blockers that seemed to either not work or give me horrible asthma problems. I finally got on a combination of meds that worked well for me. though last year i had a relapse after an infection and started having non-epileptic seizures. My parents pulled me out of school and i was home schooled the rest of that year. The rest of that year and all through the summer i did really well. This year i went back to my high school and i did well for about 6 or 7 weeks. Then i just seemed to catch infection after infection. I have not been completely infection free sense November. Of course having all these infections has made my POTS symptoms come back. Its my senior year of high school and i am trying so hard to stick it out. I miss a ton of school. What i really want to know is can POTS decrease your immune system? i went to a ENT yesterday and i get an endoscopy next week. I just wanted to know if any of you have this problem? and if the ENT doesn't find anything whats the next step? immunologist? please give me any ideas or input you have!

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Hi! Welcome to the forum. So sorry to hear you are having such a rough time of it. Having to deal with all this in your senior year of HS has to be really tough!

Personally I don't seem to have a lot of infections. But I think there are people on this forum who do have that issue and hopefully they will weigh in soon. I remember some discussion/threads related to that topic in the past on here. I do know that infections can certainly play havoc with your POTS symptoms, so can imagine that having so many one after another must be really hard on your body as it tries to deal with the POTS stuff.

An immunologist may be a good next step for you just to maybe help you figure out why you keep getting so many infections.

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Thank you for your reply. Yeah i seem to do well on my medication unless im sick, but when im sick everything gets a lot worse including my asthma problems. but usually i get better and im ok. Right now i just cant seem to stop getting sick! not even for a week! hopefully people on this forum can give me some more ideas of what could be going on.

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Sorry, I don't have an answer for you- I just wanted to say I could definitely relate with the school thing! I'm in 10th and I'm in full homebound. I hope this site helps you to find some answers! :)

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Hannah,

From all the research I have read, it seems that if you have POTS and immune issues, it is usually the immune issues causing the POTS, not the other way around. That being said, I just started seeing an Immunologist in December and we think we have found the underlying cause of my POTS. It is an immunologic problem in my case and I don't have a lot of infections, but, do have extreme levels of unexplained inflammation. We just started treating that last week and I am finding improvement in all my symptoms.

I also have a god-son who is now a high school junior, who contracted mono 3 yrs ago. He has ended up having to be home schooled at some point for the last 3 school years for just the same reason as you...he does ok at the beginning of the year and then starts getting infections and can't stay well. His mono has flared again each year as well. His docs say that it can be very difficult to keep the mono from recurring but an immunologist should be able to help you with this issue as well.

If you are anywhere near Baltimore, PM me and I can give you the name of my Immunologist...he's one of the best docs I've come across ever (and I've been to over 30 in the last 4 years because of all of this. :P )

Take care and best of luck,

Katie

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I don't know much about POTS and the immune system, but it sounds like an immunologist would be a good idea for you, or you could try an infectious disease specialist. Either should be good at helping you figure out what is going on. I hope one of your doctors finds something that will help you out!

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puppylove, in the tenth grade i had to be home bound too, but i did like the system so i tried to go back barely passing the year. My junior year i was pulled of of my school into a city school home school program after passing out and seizing on the floor in the hallway. This past summer i was doing really well, i was babysitting and taking a two mile walk everyday!! I was really hoping to enjoy my senior year at my school, but i started getting sick all the time. I have miss a TON but i am still there(sometimes) i just have to work with my teachers and my doctor sent a note to my school. I am determined to finish out my senior year at my school. There is only a little over two months left so i hope i can do it! you can pm me anytime, it sounds like were in similar situations sense we are both young and have to deal with being sick and the school system. Thank you for replying!

Katybug, That is some good advice thank you. I go to a cardiologist the specializes in dysautonomia, he diagnosed me with POTS but has never gone into what kind or why. He just said the mono caused it. I think i will try an immunologist if the ENT doesn't find anything. I just hope i can find a good one close to where i live, and i never thought about the mono recurring, i was just told it triggered my POTS. Thank you for that idea, i will certainly look into it. After all in my case every thing did start with mono. Thank you!

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Hannah, I'm sorry to hear you are getting repeated infections I'm one of those potsies that rarely picks up anything even though I'm around my little grandsons who are always catching stuff at kindergarden. Knock on wood. Maybe, it's an age thing. Perhaps I caught most of the viruses etc, when I was young. I hope they sort this out for your soon.

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Katybug,

you mentioned you had a lot of inflammation? So do I, of the skin. Can you please share with me what you meant by inflammaton?

blue

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What you will probably find in time (new research may help in this regard) is that there may be chronic autoimmune or innate immune system activation in POTS for some patients, causing pots through various mechanisms and as a consequence the immune system's balance is abnormal and in some ways it becomes deficient.

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