LymeNet Flash: Do you or did you have POTS

This is topic Do you or did you have POTS in forum Medical Questions at LymeNet Flash.

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Posted by runningshoe (Member # 24384) on :

Hi
If you had pots or have pots from lyme - have you gotten any better? What lyme meds helped the most (I know about the pots meds). Any recommendations would be great. thanks

Posted by beths (Member # 18864) on :

I had POTS really badly. I also had lyme, bart and babs (or still do). Treating all of them, helped it go away.

It took a while..but you too will get there. I think treating bart helped the most (bactrim/zith combo is what I used.

I never used any POTS meds...my LLMD didn't want to muddle the picture..I could barely walk 10 feet. I now exercise daily..that includes walking 3-4 miles.

Posted by abbriggs (Member # 21809) on :

That was my first diagnosis. I got POTS with my pregnancy with my daughter 3 years ago. I HAVE to take medication to control it or I can hardly function. I just saw a LLMD last week and am beginning on antibiotics now. How long have you had it?

Posted by ninjaphire (Member # 18234) on :

I have POTS.

Have you tried Tocopherol-free Tocotrienols for the POTS. Just throwing it out there.

Ceftin, Bactrim, Quina, GSE worked well for me.

Posted by mcaringella (Member # 24848) on :

What are POTS?

Posted by ninjaphire (Member # 18234) on :

POTS= Postural Orthostatic Tachycardia Syndrome

http://www.dinet.org/pots_an_overview.htm

Posted by runningshoe (Member # 24384) on :

Thanks for the feedback. I have had POTS for 3.5

years. I begged for western blots when it first

started but you know how that goes. After my

daughter got sick with lyme I found myself in an

office with a dr who understood lyme and pots and

said you better get on my appointment list. My

Igenx test was positive. So I started doxy and

levaquin. I did two months and then there was a

glitch in the system at the dr's office (too many

patients and the NP who was following my case

left). So now I am two months without treatment

and fearing that I will have to run the first mile

of the race again. I was very sick during 6 weeks

of the doxy. POTS was not controlled by usual

methods. I welcomed the break but 8 weeks on 8

weeks off doesn't make sense. So even though I

have an appt with the dr coming up, I am preparing

myself that she won't be ready to got the distance

with me so I am searching for the right dr. I live in MA but am willing to travel.

So if you had pots - did you do any IV stuff??

Thanks