Anyone on this board get their POTS to go away with Lyme treatment?
I got bit summer of 2008
Symptomatic spring 2009
Treated by LLMD from 2009 - the beginning of 2012 when it seemed like I had finally kicked Lyme and co's as well as biotoxin related issues and went off all meds.
But, it has been a slow and steady decline with a recent explosion of POTS within the last two months.
Wondering if I get back to treating Lyme if I've got a chance of getting these awful POTS issues to go away. Or, if the Dysautonomia is here to stay and/or unrelated to Lyme.
Thanks, Aimee
Posted by Maryland Mom (Member # 2043) on :
I used to have terrible problems with POTS, but the POTS resolved completely once I successfully treated the Lyme.
Posted by beths (Member # 18864) on :
Mine resolved too. I think it was babesia more than lyme
Posted by TerryK (Member # 8552) on :
Mine will probably never resolve (I've had it for decades) but it is much better than it used to be.
I'm with beths - babesia seems to be the culprit for me.
Terry
Posted by cozynana (Member # 34270) on :
Can you tell me what was the best treatment you use on babesia. I am in the very early stages of treating long term lyme (diagnosed in the past 6 mo after 3 plus decades of no diagnosis). We are starting with parasites, yeast/fungus, and hormones first. The parasite med has made the Lyme act up like it use to. I hate it. I am on the couch today and have been gradully getting worse again after treatment of the parasites. Any suggestion fighting Babesia?
Posted by Aimee (Member # 20946) on :
Thank you all for the input about the possible resolution of POTS with continued Lyme treatment. Curious if you ended up on IV abx or were successful kicking pots on orals. I did three years of oral abx and am thinking I'd like to give IV's a try at this point. I'm just done with this given the new onset of POTS which to me indicates the Lyme hasn't actually gone away.
Also wondering if your Lyme symptoms were mainly neuro Lyme to begin with - mine were, seems like an easy lead in to the POTS/Dysautonomia...
cozynana - Mepron with artemisinin is what worked best for me for Babesia. Within three months the night sweats were gone and all other symptoms associated with it.
Posted by Herbs15 (Member # 34777) on :
Doxy helped a little... But it was the Ceftin that really turned around my POTS - both were oral. My heart is still "cranky" every time i try zith and each time I up my meds... But I went from a 50 bpm jump when I was upright (plus 10 salt tablets a day) to a normal 15 ish rise and have stopped the salt tabs . I am going on IV this fall since my insurance will pay for it.
Posted by HollyM (Member # 15386) on :
I am wondering the same thing as you Aimee, I think I've mostly kicked Lyme, but my POTS flares a few times a year.
I'm always wondering if it's the lyme / bart or just my nervous system that has been damaged from neuro lyme.
I did IV about a year ago, and it didn't help my POTS, but POTS specific treatment helps better. I realize this is an unpopular idea on this board, but I think I might have POTS independent of Lyme.
If it makes you feel any better, I am constantly pulling my hair out trying to figure out what is going on with me!
Posted by annxyzz (Member # 20404) on :
ABX did not help with pots , but these herbs took it away for me : artemesia annua ( from Herb Pharm ) and Grapefruit seed extract . Also , I think ivermectin really helped ! I believe it hits babs and is used for babs in other countries.
It got worse temporarily when I started these because of herxing , but finally made its exit . The artemesia annua tincture was something another member here shared and it has helped me more than artimisinin .
Posted by VV (Member # 38828) on :
annxyzz,
how long did you take the herbs for? what was your dosage?
Posted by lax mom (Member # 38743) on :
The best of the best LLMD in NY, referred me for treatment of POTS and ANS dysfunction. It's one of his 15 differentials on the MSIDS model.
I was referred out to get norephinephrine levels checked lying and standing. I am now on a beta-blocker that is helping me.
He treats the things that Lyme has screwed up, while treating the Lyme. Ex. Testosterone levels. My husband's were 100. He treated that specifically, while treating Lyme, and now my husband's are normal.
You don't need to wait until Lyme gets healed to get some relief from the other things that are making you feel miserable.
Posted by ktkdommer (Member # 29020) on :
My sickest son with POTS, got a lot of relief from Lyme, but no such luck with POTS. Since he had onset as a teen, we are still hopeful that he will be in the percentage that outgrows POTS.
He is treating symptoms. He hates the way he sweats so bad and is embarassed by it. It isn't a nightime thing.
Posted by coffee71 (Member # 17467) on :
I have been wondering the same thing. My Lyme symptoms have been mainly neurological
I was diagnosed with POTS last December, have started medications.
But for last ten days I have gone trough flare up that made me wondering if one of Lyme&Co bugs is acting up again (I have been off abx for long time so it is very possible).
This flare up of symptoms is very similar to Babasia symptoms in my case. But it also could be a result of the POST medication dosage change that my cardiologist ordered a month ago.
Posted by Rivendell (Member # 19922) on :
Lax Mom, what medication are you taking? I was given Beta Blockers, but they made me feel worse.
(I am having trouble with my computer. I tried to send you a PM.)
anyway, I would like to know the name of the Beta Blocker and the name of the doctor that is treating you for POTS.
You can PM me. Hopefully I will get this computer problem straightened out.
We are really watching the budget, and we haven't been upgrading the computer.
![[Smile]](smile.gif)
. I am going on IV this fall since my insurance will pay for it.