posted
My 16yo daughter has been tentatively diagnosed with POTS. Last year when I was trying to figure out what was wrong with her, I came across POTS and wondered if that was causing her problems. It's been in the back of mind since, but since she was diagnosed with Lyme & Co I let it go.
Yesterday at the LLND appointment the doc did a bunch of testing and is fairly certain that POTS is what is causing many of her symptoms. Her regular blood work looked great, everything within normal ranges. (cbc w/dif). But her sypmtoms are bad! Doesn't seem to fit.
Anyway, I've been reading on POTS and it seems like wtih everything else Lyme, treatment and progress is iffy, and it may take a long time.
Who here has POTS? What has worked, what hasn't? Any advice?
Thanks much!
Posts: 333 | From Lyme Here Too | Registered: Mar 2010
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sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
I had symptoms of POTS early in my illness. It has improved with lyme treatment. I still have issues with heart palps, but don't feel like I am going to pass out much anymore. My blood pressure is more normal now.
Posts: 4035 | From Mississippi | Registered: Jul 2008
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posted
My daughter has/had POTS. We tried a med to lower her blood pressure and that made things worse. We tried Florinef and that also made things worse.
During that time, she had issues standing up and feeling light-headed. Sometimes she would kind of collapse while walking or lose her balance and grab on to the wall.
When our attempts to work directly on the POTS made things so much worse, we set that aside and focused on Lyme treatment.
I am not sure how much that is affecting her now. She is better than she was when we were trying to address it.
We did take her to a cardiologist who ruled out anything he would treat and wasn't very helpful.
Posts: 984 | From US | Registered: Dec 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- My understanding that nearly everyone with lyme has POTS or the similar NMH (neurally mediated hypotension). It just goes with the terrain. Lyme CAUSES POTS and NMH. Treatment helps, of course.
Other things (such as adrenal support, etc.) that help are included in this thread: --------------
posted
Hi, Yrs. ago heard POTS &Lyme &Fibro are all linked & CFIDS. She just may have another form or co-infection. Huggggssss,If YOU Need,Kerry
Posts: 746 | From Clearwater/fl/Pinellas | Registered: Jun 2003
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beths
Frequent Contributor (1K+ posts)
Member # 18864
posted
I had horrible POTS when I first got infected with lyme, babs and bart. My LLMD didn't want to treat it; however it was really bad. I couldn't stand more than a few minutes and couldn't walk even to the mailbox.
As I treated my lyme and co's my POTS went away! I now do yoga 2x/wk and walk for 50 minutes 3 time a week.
Hang in there, treat the lyme.
Posts: 1276 | From maryland | Registered: Jan 2009
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posted
Seems like a lot of teenage girls/young women with TBD have POTS. Florinef was a godsend for us. Ask your daughter's doc to prescribe it for her. See if it helps. We saw no side effects at all, just improvement/elimination of symptoms. Docs prescribe something else that I can't think of right now, but it has a lot of side effects and from what I gather isn't nearly as effective.
-------------------- You gain strength, courage, and confidence by every experience in which you really stop to look fear in the face. You are able to say to yourself, 'I lived through this horror. I can take the next thing that comes along.'
---Eleanor Roosevelt Posts: 748 | From somewhere | Registered: May 2010
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posted
And the definitive test for POTS is a tilt-table test. If you fail you have POTS. But really, it should be able to be dx'ed easily by a doc. When you stand up, your BP drops. If you stand for a prolonged period of time (like even a few minutes) you feel you're going to pass out.
POTS was by far the easiest thing to fix.
-------------------- You gain strength, courage, and confidence by every experience in which you really stop to look fear in the face. You are able to say to yourself, 'I lived through this horror. I can take the next thing that comes along.'
---Eleanor Roosevelt Posts: 748 | From somewhere | Registered: May 2010
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MariaA
Frequent Contributor (1K+ posts)
Member # 9128
posted
I had mild POTS this winter, and when I started to address adrenal system problems for other reasons, it got a lot better.
I increased my salt intake (my blood tests, the complete metabolic panel, showed low sodium), started taking low doses of cortef (5 mg once or twice a day), drastically reduced the sugars and starch in my diet (not sure if this really helps the adrenals or not, but it seems to help my overall health drastically).
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