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Justlooking

Autoimmune POTS remission and relapse?

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I have a form of POTS that comes and goes. I got Lyme in 2004 and got POTS soon thereafter. All my ANS testing and blood work (mayo panel) comes back normal but I have a small increase in HR upon standing and dizziness although it’s quite mild compared to stories that I read here, but it’s enough to upset my life. HR went from 65 to 95....sometimes as high as 120. 

From 2004-2006 I didn’t know what I had....then the Lyme Dx came along. I recovered from my symptoms by 2007 and had a child. My Lyme insomnia came back for a few months but went away in time for me to have another child in 2009. Life was good until 2011 when I got a cold and my POTS and Lyme symptoms came back. 6 months of meds put me back in remission and then another cold in 2012 brought them back! 6 more months of meds and I was fine again.

From 2013-2108 I was fine...no Lyme or POTS symptoms....I ran, did CrossFit, jumped played and worked 50 hours a week and sat in saunas with zero symptoms. I had many colds during this time but never got a Lyme flare.

 In Jaurary 2018 I got a cold and the Lyme POTS symptoms came back! 3 months on treatment resulted in me being able to put in 20k steps out in the summer heat and return to running, mowing the grass etc but I did notice that about once a month, I’d have literally a day where my heart would beat faster standing....every month like clockwork. The next day I’d be fine and run 5 miles. This pattern continuted until September when I got another cold. 3 weeks after the cold,  and now 9 weeks later I’m back on Lyme treatment and my POTS symptoms are back at it! This time I have developed a higher resting heart rate (80 compared to 60) that doesn’t respond to beta blockers....I also get in increase in HR after eating that doesn’t respond to beta blockers! Symptoms I’ve never had before and freak me out! 

I’m beginning to think that I have some kind of autoimmune issue to all this. I’ve been reading about the newly discovered antibodies and whatnot and it kind of makes sense....but not completely.

If someone had antibodies in their blood wrecking havoc on the nervous system, how could I literally be fine and then one day a month have symptoms? (Im on continueous BC pills so It’s not hormonal) 

I understand that things can wax and wane but I would sit in hot sauna’s and do strenous exercises in 110 degree heat and humidity with zero problems. I would “cut” and drop water weight for cross fit completions....if I had some low level of antibodies present (they aren’t just going to up an go away) wouldn’t the heat and dehydration and least make me feel worse?

I just want to get off this Lyme/POTS roller coaster and figure out what is causing the flares!

Anyone else literally have zero symptoms one day and them slight symptoms another only to have them disappear the next? 

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If I remember my research correctly I remember seeing something about Lyme and coinfections being really hard to really get rid of. It might be more of your underlying is lyme's and your POTS flares because of it. Do you see a "Lyme literate doctor" ?

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I’m on my 2nd LLMD....first one was a bust.

I take Zyrtec daily year round for allergies. I dont think I have mast cell problems....I don’t have flushing episodes.

Im sick of all this crap....

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The treatment for MCAS is zyrtec and Zantac. Something about them both blocking histamine. Not sure. I won't risk trying it considering the issues I had with side effects when they had me on both prilosec and Zantac. 

Curious have you tried the xyzal yet? I used to take zyrtec but I love my Xyzal now. It is like a super concentrated zyrtec. 

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