I know that Lyme can cause POTS but can someone explain, or point me to a website that explains, exactly how it causes it? I tried Googling but couldn't find anything.
I also know that donating blood can make POTS worse - would the same apply to getting blood drawn for blood tests? I had blood drawn on 1/4 and it seems since then my heart rate has been higher and I had to have blood drawn again this morning (6 vials) and today it seems higher.
Wikipedia has some decent info as well, but their website is off line for the day.
I was recently diagnosed with POTS myself, but I am not taking any medicine to treat it... My LLMD wanted me to take Medodrine, but I am afraid to take it.. The pharmacy put a label on the bottle stating that I should "check the FDA black box warning".. So I read up on it and found things that made me nervous to try it.
Has anoyone out there taken a med for POTS that really helped without a lot of side effects?
-------------------- "The simple things can get you through the hardest times." Posts: 628 | From Connecticut | Registered: Sep 2010
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posted
yes it can...i split my blood draws up ...no more than 6 vials at a time...do one one day wait 4-5 days and then do the rest...there is a low volume of blood so that is why that happens..make sure you are very hydrated before draws...We have a great POTS group on FB called California Potsies ..it is a closed group so need to for approval..they have all the latest info and drs names of best in the countries...
Posts: 871 | From orange county, ca. | Registered: Jan 2006
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Make sure you are hydrated and getting enough salt.
Adrenal issues can cause/aggravate it, as can a host of other hormone issues.
This was one of the first symptoms I presented with years ago.......I take atenolol daily along with having made many other adjustments due to other issues that the tick stuff has caused.
-------------------- TL Posts: 365 | From OK | Registered: Jul 2007
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posted
Thanks for the info. I was just looking for an explanation why my heart racing has gotten worse again. Now I realize it started the day I got blood drawn on the 4th and I had blood drawn again today and it's worse today. Live and learn. At least I know why now.
Posts: 165 | From TN | Registered: Jul 2011
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I have another question. It seems that upping my dose of hydrocortisone is helping with the heart racing. How is low blood volume connected with the adrenals and/or low cortisol? I was on 30 mg hydrocortisone and 1 beta blocker a day and now I take 40 mg HC and 2 to 3 beta blockers.
posted
That is a great question--I would also like to know the answer.. I started taking hydrocortisone in Dec., and I think it has helped with the heart racing episodes somewhat.
All of our systems are certainly connected, and helping out the adrenals must help our body "right" itself in a way that has an impact on the autonomic nervous system.. (I'm just guessing here)... Perhaps someone else can shed some light on this.
-------------------- "The simple things can get you through the hardest times." Posts: 628 | From Connecticut | Registered: Sep 2010
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ktkdommer
Frequent Contributor (1K+ posts)
Member # 29020
posted
My youngest son has POTS. He saw one of the best docs in the US and was never tested for Lyme eventhough the doc was doing research on POTS and post Lyme disease.
My understanding is that POTS is a form of dysautonomia which is deregulation of the autonomic nervous system. This can happen when the bacteria get into the brain.
My son does not regulate heart rate, BP, body temp due to POTS. He has so many symptoms because of this. With Lyme treatment he is getting better. The doctor believes that some day this will all be regulated again. He sees lots of Lyme patients with POTS.
My son takes florinef and atenolol for POTS. He is no longer fainting or dizzy. His migraine med is also supposed to help with POTS.
Good luck!
-------------------- Things are never dull. After 3 fighting Lyme, 2 are in remission. Youngest is still sick, age 22. He has new diagnosed Chiari Malformation and Ehlers Danlos Syndrome. Posts: 1366 | From Perrysburg, Ohio | Registered: Nov 2010
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posted
If you get The stop the Thyroid madness book og go to their site it explains why HC helps with the heart palps...Has something to do with the adrenals being fixed first BEFORE any thyroid (natural only)....and Reverse T3 results...very involved but works...I am starting this in a week///
Posts: 871 | From orange county, ca. | Registered: Jan 2006
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I know that low cortisol can cause T3 to pool in the blood and that's why HC helps with heart racing. However, what I don't understand is how the low blood volume is related. If my cortisol really was too low, despite being on HC, how is that caused by low blood volume?
I am still struggling after this blood draw. I sure hope it gets easier soon.
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