canbravelyme
Frequent Contributor (1K+ posts)
Member # 9785
posted
Hi guys,
Hope your day is a pretty good one today
Saw a POTS specialist -- finally -- my LLMD had diagnosed me with POTS and put me on florinef and beta blockers; I think POTS specialist didn't like that which may have contributed to the following:
He said he thought I have MILD POTS -- I throw up almost every day w diarrhea; pass out, etc. I dont leave the house for days at a time, and when I do go out, it's to the car -- what the h*ll is MODERATE POTS, then????
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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Judie
Frequent Contributor (1K+ posts)
Member # 38323
posted
Isn't florinef a steroid? That can make Lyme worse.
Posts: 2839 | From California | Registered: Jul 2012
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canbravelyme
Frequent Contributor (1K+ posts)
Member # 9785
posted
Thanks, guys!
I checked out the link, and clearly I fit the "significant" category -- mild is described as people able to function w normal lives bwahahhaha what a farce. These POTS attacks have me unable to do most of the tasks of daily living.
I've had some time to digest all the POTS specialist said, and my brilliant LLMD has already got me on the meds -- all that's really left is trying to kick-start my ANS using exercise.
SO, I've decided to do some intense activity in small doses throughout the day, and I feel a little better.
Judie -- florinef is a "safe" steroid for Lyme -- TuTu could explain better than I. How are you doing? Are you out of that horrible stomach spiral? I am not super, but I'm no longer in the living hell I was last week. I'm treating candida with herbals and probiotics -- I think that's helping
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posted
Cortef is supposedly safe for Lyme. It helps the adrenals. I'm not sure about Florinef.
I tried it and it drove me insane. It made me so hungry I couldn't stand it. Could be that my POTS symptoms were not as bad as canbrave's.
Canbrave.. Do check out the possibility of mast cell disease causing your POTS.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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Summer3
Frequent Contributor (1K+ posts)
Member # 35286
posted
I have POTS and ANS damage from Lyme. I was diagnosed by an EP who does not know much about Lyme. I took Florinef and beta blockers.
Now I take midodrine alone and that helps me. Just got an implanted heart monitor too to figure out if that might be contributing to some of my unusual fainting episodes (with confusion). Most of my fainting is from BP drops.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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Judie
Frequent Contributor (1K+ posts)
Member # 38323
posted
" How are you doing? Are you out of that horrible stomach spiral?"
Thanks for asking. The doc wants me to try one drug at a time. I found one of the culprits already. It's definitely the cefdiner. One dose and I was in agony again.
Rotating a bunch in this weekend. I'll keep my fingers crossed none of the others are contributing.
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canbravelyme
Frequent Contributor (1K+ posts)
Member # 9785
posted
Gosh, Tu -- that sure sounds like me! I'll speak with my LLMD about it.
Judie -- hope you're feeling better
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