Has anyone developed pots syndrome from Lyme? Any thoughts on how to cope?
Posted by TF (Member # 14183) on :
Many lyme patients also suffer with POTS. Get to a good lyme doctor and get tested and treated by him for POTS.
You may want to do a Google search for POTS and its treatment.
YOu can also search Lymenet. You will find the "search" function near the top of the screen. Use key words like "POTS" "tachycardia" etc. and search the Medical Questions forum.
This way, you will see what others have had to say on the subject and how they were treated.
So, there is a lot of good info you can mine!
Posted by SickSam (Member # 45330) on :
Yep, definitely. Propranolol helped me a ton at one point in time.
If its a severe issue and you need a specialist, there's an electrophysiologist near Dallas who specializes in POTS, and he is also Lyme-aware.
Posted by beck (Member # 43653) on :
Dysautonomia International lists Lyme Disease as a possible cause of POTS. They have a very informative website as well as a directory of doctors that treat POTS.
The Dysautonomia Information Network is also a great resource. They have an online forum. You might try posting there to find other Lyme patients that also have POTS.
As far as how to cope, for me Florinef (Fludrocortisone) has really helped decrease my symptoms. Also drinking lots of water with electrolytes and taking salt tablets has helped by increasing my blood volume. These are the salt tablets I take:
Also, some patients get weekly infusions of saline or lactated ringer's (saline with electrolytes) to help increase blood volume. Many POTS patients have hypovolemia (low blood volume) and doing things to help increase blood volume can help reduce symptoms.
Heat can exacerbate POTS symptoms because heat dilates blood vessels which causes your autonomic nervous system to have to work harder to pump blood back up and to your brain. Your heart has to pump faster (tachycardia) which causes symptoms. So avoid being outside when it is hot and don't take long hot showers or baths. Sitting during a shower can help. The last place you want to pass out is in the shower. I take my shower right before I go to bed since it makes me fatigued.
I have a bar stool in the kitchen that I can sit on while preparing dinner or washing dishes that way I am not standing for a long period of time.
I developed POTS from Lyme and my llmd put me on a very low dose of a beta blocker and it has helped tremendously. It was a key in getting me to the next level of healing.
Feel better!
Posted by bullmastiffluvr (Member # 50250) on :
update to pots symptoms! Actually I don't get tachycardia so primary care doc decided I can't have pots. I do get leg weakness, near syncope, orthostatic hypotension and have failed tilt table test. I am on my first treatment for lyme with doxycycline. Thank you for all who have given suggestions.
Posted by SickSam (Member # 45330) on :
Actually I remember reading in Dr. H's book that he had a patient that couldn't get well. They didn't have tachycardia but they had orthostatic hypotension. He gave them fludrocortisone and it was like a miracle.
So even though they didn't have tachycardia, they still had a form of POTS that responded very well to treatment. If you failed the tilt table test, I'd say it's still worth thinking about a treatment trial.