Summer3
Frequent Contributor (1K+ posts)
Member # 35286
posted
Anyone else have this from Lyme? I have no control of my bp dropping and of course it's always normal when I'm stressed at a doctor's office.
I'm on midodrine 10mg doses and my bp is still dropping randomly. Today it was 77/55. My normal is 115/70.
I've tried licorice, florinef, beta blockers, salt tablets, caffeine, fluid loading, compression, etc. Still no control so the only med I take now is midodrine. I'm not a fan of going on SSRI's or back on high doses of Florinef. I'm not taking abx so I'd have nothing to counter any "possible" immune suppression. My lymphocytes are already too low @ 16.
What should I do? I feel like crap and can faint or get close at any time with no warning.
posted
Hi Summer - I didn't have syncope...but have pots... but it was from chemical exposure... I used midodrine for several months...but seem to need it less and less when i dont take perfect care of myself... are you chemically sensitive at all? creating a clean environment and doing many vitamin/glut/ala ivs really helped...
Posts: 109 | From North East | Registered: Mar 2011
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posted
I have this for about 8 years now. I have had great success with beta blockers...but it seems you've already tried it. Increasing salt intake has also helped me tremendously.
Gatorade has saved me on many occasions.
Posts: 28 | From New Jersey | Registered: Mar 2014
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Summer3
Frequent Contributor (1K+ posts)
Member # 35286
posted
Yeah I've tried pretty much everything. Can't get control of it. I've had it about 3 years but only treated it individually a few months ago.
NMS is the same as autonomically mediated syncope. My doctor had several interchangeable names for it.
Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
quote:Originally posted by Lymetoo: What's the difference between this and Neurally Mediated Hypotension? Do you know?
I've heard of NMH in regard to Lyme.
It's the same thing; except syncope means fainting, so it applies when you actually faint, or perhaps when you almost faint.
Posts: 3771 | From around | Registered: Mar 2008
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Rumigirl
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Member # 15091
posted
Oops, answered before reading the rest of the thread.
Summer, did you not have a good response to Florinef? That is usually the most important med for this. It DOES NOT suppress your immune system, esp when you need it. So don't stay away from it for that reason. LLMD's rx it all the time when it is needed.
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Summer3
Frequent Contributor (1K+ posts)
Member # 35286
posted
I did try Florinef at 0.1. I instantly got strep and hadn't caught anything for years. I went off for a while then went back on and again after 2 days I had a 104-105 degree fever.
My EP wants me on up to 0.5 of Florinef. I can't even handle 0.1. Plus I'm not on antibiotics. Do LLMD's typically use Florinef with patients that are only on herbs? That's my main concern.
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