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Does POTS go away

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Lyme Disease
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bro123
Regular Member
Joined : May 2021
Posts : 225
Posted 6/22/2022 3:09 PM (GMT -6)
I have severe pots. I can't stand for more than a few minutes. It really hasn't improved that much over the past year although I just started treating Babesia. Does it actually go away with treatment. For those who had severe POTS, meaning that you fainted and couldn't stand, did it go away? Is it worth going to a POTS doctor? I feel like it may contradict with a lot of things im doing with Dr. J but I really need this symptom to improve. Ive been exercising hardcore but still no improvement. If I don't have those compression stockings on, I don't know how I would live my life.
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Girlie
Forum Moderator
Joined : May 2014
Posts : 46704
Posted 6/22/2022 3:24 PM (GMT -6)

bro123 said...
I have severe pots. I can't stand for more than a few minutes. It really hasn't improved that much over the past year although I just started treating Babesia. Does it actually go away with treatment. For those who had severe POTS, meaning that you fainted and couldn't stand, did it go away? Is it worth going to a POTS doctor? I feel like it may contradict with a lot of things im doing with Dr. J but I really need this symptom to improve. Ive been exercising hardcore but still no improvement. If I don't have those compression stockings on, I don't know how I would live my life.

I didn’t have severe POTS but I had moderate symptoms.
When I stood up from standing my feet would turn red - the blood was pooling.
Also my pulse would race upon standing too.

I also would sway back and forth when I was standing.

It did get better with treatment - I haven’t felt those symptoms in a long time.

I used the Eliptical for excercise.
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Lymie24
Veteran Member
Joined : Nov 2017
Posts : 546
Posted 6/22/2022 3:44 PM (GMT -6)
Did Dr. J give you specific medicine for POTS? I know there are some pharmaceuticals that can help. If you are that severe and the basic increased salt intake, compression socks, fluid intake, exercise isn't helping then you should be a candidate for further help. I'm not familiar with the specific meds that help. If Dr. J's clinic won't help I'd look elsewhere.

My POTS has improved greatly since last year with treatment.
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Girlie
Forum Moderator
Joined : May 2014
Posts : 46704
Posted 6/22/2022 3:52 PM (GMT -6)

Lymie24 said...
Did Dr. J give you specific medicine for POTS? I know there are some pharmaceuticals that can help. If you are that severe and the basic increased salt intake, compression socks, fluid intake, exercise isn't helping then you should be a candidate for further help. I'm not familiar with the specific meds that help. If Dr. J's clinic won't help I'd look elsewhere.

My POTS has improved greatly since last year with treatment.

Mine was worse prior to seeing DrJ - I was treated with a LLND for a couple years before going to dr J.
He offered me a medication (the LLND ) that I could fill but I declined it.
I think it was Midodrine
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bluelyme
Veteran Member
Joined : Nov 2015
Posts : 6039
Posted 6/22/2022 4:17 PM (GMT -6)
if u cant afford synthetic aldosterone, i used to chew licorice root to help with the low bp , and drank lots of salt water for a while .

im not sure if my mitral valve prolapse and enlarged heart had mostly to do with it (iv rocephin) or if it was a nitric oxide thing with lack of gut bacteria , i remember specifically l.planterium helping with my flat finger syndrome
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saraeli
Forum Moderator
Joined : Jan 2019
Posts : 3012
Posted 6/22/2022 6:43 PM (GMT -6)
POTS was quite bad for me. I know how deeply limiting and scary it can be. I saw a dysautonomia specialist, of which there are few. She understood the complexity of tick-borne disease and chronic illness, and she did offer me tips that helped. She suggested trying things other than meds first (2 tsp. salt per day, proper hydration, compression, recumbent exercise, vagus nerve and nervous system support). Other dysautonomia specialists seem to favor meds, and there are a few that people try, though none of them seems to have a better track record than any other, as far as I know.

I did a few things at once that resolved POTS for me. I don't know which one helped the most since I did them all simultaneously.
- Lots of salt, proper hydration (not too much or too little)
- Treating MCAS (quercetin, curcumin, low-histamine diet, trigger avoidance)
- DNRS limbic system retraining

POTS does go away for a lot of us once our systems are no longer overloaded and stressed. Do not worry that it will be permanent.
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Wisco woman
Regular Member
Joined : Oct 2017
Posts : 279
Posted 6/23/2022 4:25 AM (GMT -6)
Disulfiram got rid of my dyspnia and other dysautonamia symptoms. When I went off of the disulfiram the dyspnia slowly crept back in. The breathing has been my worst/most persistent symptoms over the years but I have had little breaks from the symptom during various treatments. For me it seems to keep coming back. The heart rate issues have gotten way better over the years so thats good at least. It can go away, we just need to find out why our bodies are doing it and then give them what they need.
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