posted
Have had post-exertional fatigue for over a decade which worsened last year into chronic, intermittent fatigue. Had a rotted root canal tooth removed in September and a week later felt great, back to normal! I underwent lumpectomy for breast ca and was doing well until the 3rd week of radiation therapy in December (also had a depomedrol injection for hip bursitis that month) when I crashed.
Diagnosed with Lyme last month (IgeneX) and POTS (tilt table test) last week.
I'm considering perhaps that the radiation therapy as well as the steroid injection may have activated Lyme and that the Lyme has caused POTS.
Anyone else here dealing with POTS?
Which treatment for POTS (besides treating Lyme) have you found most effective?
Posts: 116 | From USA | Registered: Jun 2016
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quote:Originally posted by foxy loxy: low dose hydrocortisone...
Interestingly, I tried low dose hydrocortisone a few years ago for my "intermittent, debilitating fatigue", and during that time I had the fewest episodes I had ever had.
The integrative doc I saw at the time was not familiar with it, however, and weaned me off of it. At the time I was doing well, so I stayed off it. I was also afraid to forget a dose or forget to bring the meds with me.
foxy loxy, are you taking low dose hydrocortisone now?
Posts: 116 | From USA | Registered: Jun 2016
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posted
POTS was a major problem for me for a while. A very low dose of propranolol kept my heart rate down nicely.
When I started Lyme treatment, my POTS got even worse. I had to triple my propranolol! It was a life-saver for me when I needed it.
Posts: 748 | From Texas | Registered: Feb 2015
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droid1226
Frequent Contributor (1K+ posts)
Member # 34930
posted
Lyme & POTS pretty much go hand in hand. It's a lot of people's first diagnosis before lyme. Try a beta blocker. Inderal was a huge help for me.
I am still on low dose hydrocortisone. My POTS, however, is fairly mild. My biggest problem was feeling like I could black out. Salt helped some, and florinef a teeny bit.
I started taking 5mg of hydrocortisone for adrenal fatigue, and I suddenly realized I didn't have trouble feeling faint anymore.
The thing that is kinda neat about hydrocortisone, it that it can give your adrenals a boost, while helping POTS.
Posts: 477 | From Pennsylvania | Registered: Nov 2015
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posted
btw. why were you afraid to skip your meds? I have skipped a day here and there and nothing happened!
Posts: 477 | From Pennsylvania | Registered: Nov 2015
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quote:Originally posted by foxy loxy: btw. why were you afraid to skip your meds? I have skipped a day here and there and nothing happened!
I was following the protocol in Dr. William McK. Jeffries book, Safe Uses of Cortisol, at replacement dose of 20 mg per day (10 in am, 5 at noon, 5 at 4 pm). Because those were replacement doses, this would require "stress" dosing for illness, stress, and missing doses (or a day's worth) could mean crashing.
I actually wore a MediAlert necklace at the time. But I still had episodes of severe, intermittent fatigue, so when my doctor weaned me off I didn't try it again.
Posts: 116 | From USA | Registered: Jun 2016
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posted
And thank you to all who replied, it is a relief to know I'm not alone. I have seen so many regular and even more integrative doctors, and yet I had to figure this one out myself. Not one alternative "fatigue" specialist I saw ever mentioned POTS or even considered it.
Posts: 116 | From USA | Registered: Jun 2016
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quote:Originally posted by garnet10: Because those were replacement doses, this would require "stress" dosing for illness, stress, and missing doses (or a day's worth) could mean crashing.
I actually wore a MediAlert necklace at the time. But I still had episodes of severe, intermittent fatigue, so when my doctor weaned me off I didn't try it again. [/QB]
- Exactly, it's on my medic alert bracelet because if I'm in an accident, I will need MORE hydrocortisone than usual or I will go into shock.
Plus, they need to know I'm taking it.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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sammy
Frequent Contributor (5K+ posts)
Member # 13952
posted
I take Adderall, it causes vasoconstriction and helps increase my typically very low blood pressure.
I didn't tolerate any traditional POTs meds but read that Vanderbilt uses Ritalin and Adderall in some cases. Thankfully my doctor was open minded and willing to try it!
I also use compression stockings and a waist trainer at times to keep fluid from building up in my lower half.
My doctor wants me to either swim or use a recumbent bike for 30 min every other day. This basically retrains the heart and blood vessels (my geneticist gave me a very complicated physiological explanation!) It also releases helpful neurotransmitters (they assist in regulating heartbeat too!).
I'm also supposed to drink more fluids. Gatorade and Powerade are preferred over plain water as the salt and such helps to rehydrate better. For many people (true for me!) plain water can run right through me without making me feel better, even if severely dehydrated!
Another thing I've done is elevate the head of my bed. Normal bed lifts didn't fit so I had to figure out my own plan... I used paving bricks! I just put one under each side of the head of my bed. This lift is supposed to help prevent the loss of body fluids over night, theoretically preventing morning dehydration.
Someone else mentioned avoid hot baths, I agree. That will make you pass out! I don't do well in hot weather or in the glaring sun either.
Avoid standing up too long also, if you must, move around, shift weight, walk around. Don't stand still, you are more likely to pass out that way!
There is lots of good info online. Just google search...
Blessings!
Posts: 5237 | From here | Registered: Nov 2007
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posted
Diagnosed with pots for years before bartonella and confections were found. Used compression stocking for a long time. However, once starting cortisol replacement, fludrocrtisone, and IV saline during lyme treatment POTS got a lot better and almost gone.
Posts: 70 | From New Jersey | Registered: Aug 2013
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bluelyme
Frequent Contributor (1K+ posts)
Member # 47170
posted
My doc recommended inhaled aldosterone from hong kong ...aint cheap so i am trying sole and licorice. ..
-------------------- Blue Posts: 1539 | From southwest | Registered: Dec 2015
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posted
sammy, I tried dextroamphetamine but I couldn't take the dry mouth--also made my breath smell!
bluelyme, I bought licorice caps because I also had 2 low documented bp's, but haven't tried it yet.
kms1990, I tried fludrocortisone years ago, but even the small dose gave me a headache. I'm wondering if I should try it again because physiologically it makes the most sense.
kms1990 is your POTS almost gone because your Lyme is better, or because of the cortisol and fludrocortisone?
Posts: 116 | From USA | Registered: Jun 2016
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posted
Garnet - POTS is going away because lyme and bartonella are being treated. My theory is my blood flow was very poor to my brain so my body responded by keeping my heart rate up. Almost always was 100 even resting and 130 or so standing. Today my rate was 80 on average. Things are getting much better.
Posts: 70 | From New Jersey | Registered: Aug 2013
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kms1990, the prospect that treating Lyme would resolve my CFS and POTS is encouraging. I hope I have similar success.
Posts: 116 | From USA | Registered: Jun 2016
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posted
Salt + plain propel water. The Propel has electrolytes without all of the sugar of Gatorade and the like and the salt helps you retain the fluids. Most with pots have incorrect levels of ADH- anti diuretic hormone and this plays a role. The Alta seltzer gold is in the same category as the propel and also helps with herxing.
-------------------- Ill since 1998 DX 2005 Posts: 93 | From tampa, fl, usa | Registered: Apr 2007
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posted
Garnet - Lyme is very important if you have it but I think it was the bartonella specifically for me which caused all my POTS / blood flow issues.
Posts: 70 | From New Jersey | Registered: Aug 2013
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posted
Garnet - also I want to say that without cortisol replacement, fludrocrtisone, and IV saline during lyme / bart treatment I don't think I would have made it through as my body would not have been able to handle the herxing ect.
Posts: 70 | From New Jersey | Registered: Aug 2013
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