LymeNet Home LymeNet Home Page LymeNet Flash Discussion LymeNet Support Group Database LymeNet Literature Library LymeNet Legal Resources LymeNet Medical & Scientific Abstract Database LymeNet Newsletter Home Page LymeNet Recommended Books LymeNet Tick Pictures Search The LymeNet Site LymeNet Links LymeNet Frequently Asked Questions About The Lyme Disease Network LymeNet Menu

LymeNet on Facebook

LymeNet on Twitter




The Lyme Disease Network receives a commission from Amazon.com for each purchase originating from this site.

When purchasing from Amazon.com, please
click here first.

Thank you.

LymeNet Flash Discussion
Dedicated to the Bachmann Family

LymeNet needs your help:
LymeNet 2020 fund drive


The Lyme Disease Network is a non-profit organization funded by individual donations.

LymeNet Flash Post New Topic  New Poll  Post A Reply
my profile | directory login | register | search | faq | forum home

  next oldest topic   next newest topic
» LymeNet Flash » Questions and Discussion » Medical Questions » Anyone resolve POTS symptoms with Lyme treatment?

 - UBBFriend: Email this page to someone!    
Author Topic: Anyone resolve POTS symptoms with Lyme treatment?
Aimee
LymeNet Contributor
Member # 20946

Icon 1 posted      Profile for Aimee     Send New Private Message       Edit/Delete Post   Reply With Quote 
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

Posts: 239 | From Virginia | Registered: Jun 2009  |  IP: Logged | Report this post to a Moderator
Maryland Mom
LymeNet Contributor
Member # 2043

Icon 1 posted      Profile for Maryland Mom     Send New Private Message       Edit/Delete Post   Reply With Quote 
I used to have terrible problems with POTS, but the POTS resolved completely once I successfully treated the Lyme.
Posts: 962 | From Charleston | Registered: Jan 2002  |  IP: Logged | Report this post to a Moderator
beths
Frequent Contributor (1K+ posts)
Member # 18864

Icon 1 posted      Profile for beths     Send New Private Message       Edit/Delete Post   Reply With Quote 
Mine resolved too. I think it was babesia more than lyme
Posts: 1276 | From maryland | Registered: Jan 2009  |  IP: Logged | Report this post to a Moderator
TerryK
Frequent Contributor (5K+ posts)
Member # 8552

Icon 1 posted      Profile for TerryK     Send New Private Message       Edit/Delete Post   Reply With Quote 
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

Posts: 6282 | From Oregon | Registered: Jan 2006  |  IP: Logged | Report this post to a Moderator
cozynana
LymeNet Contributor
Member # 34270

Icon 1 posted      Profile for cozynana     Send New Private Message       Edit/Delete Post   Reply With Quote 
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?
Posts: 620 | From Ks | Registered: Oct 2011  |  IP: Logged | Report this post to a Moderator
Aimee
LymeNet Contributor
Member # 20946

Icon 1 posted      Profile for Aimee     Send New Private Message       Edit/Delete Post   Reply With Quote 
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.

Posts: 239 | From Virginia | Registered: Jun 2009  |  IP: Logged | Report this post to a Moderator
Herbs15
Member
Member # 34777

Icon 1 posted      Profile for Herbs15     Send New Private Message       Edit/Delete Post   Reply With Quote 
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 [Smile] . I am going on IV this fall since my insurance will pay for it.

--------------------
Lyme dx 10/12/11
CD57: 22
IgM
31+, 41+, 83-93 IND
IgG
30+, 31+, 34 IND, 39+, 41++++, 58+

Posts: 34 | From Texas | Registered: Nov 2011  |  IP: Logged | Report this post to a Moderator
HollyM
Member
Member # 15386

Icon 1 posted      Profile for HollyM     Send New Private Message       Edit/Delete Post   Reply With Quote 
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!

Posts: 33 | From Chicago | Registered: May 2008  |  IP: Logged | Report this post to a Moderator
annxyzz
Frequent Contributor (1K+ posts)
Member # 20404

Icon 1 posted      Profile for annxyzz     Send New Private Message       Edit/Delete Post   Reply With Quote 
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 .

--------------------
annxyzz

Posts: 1178 | From East Texas | Registered: May 2009  |  IP: Logged | Report this post to a Moderator
VV
LymeNet Contributor
Member # 38828

Icon 1 posted      Profile for VV     Send New Private Message       Edit/Delete Post   Reply With Quote 
annxyzz,

how long did you take the herbs for?
what was your dosage?

Posts: 922 | From Philadelphia | Registered: Sep 2012  |  IP: Logged | Report this post to a Moderator
lax mom
Frequent Contributor (1K+ posts)
Member # 38743

Icon 1 posted      Profile for lax mom         Edit/Delete Post   Reply With Quote 
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.

--------------------
♥ ♥ ♥ ♥ ♥
(aperture)
http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=1;t=115161;p=0

Posts: 2519 | From USA | Registered: Aug 2012  |  IP: Logged | Report this post to a Moderator
ktkdommer
Frequent Contributor (1K+ posts)
Member # 29020

Icon 1 posted      Profile for ktkdommer     Send New Private Message       Edit/Delete Post   Reply With Quote 
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.

--------------------
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  |  IP: Logged | Report this post to a Moderator
coffee71
LymeNet Contributor
Member # 17467

Icon 1 posted      Profile for coffee71     Send New Private Message       Edit/Delete Post   Reply With Quote 
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.

Posts: 191 | From va | Registered: Sep 2008  |  IP: Logged | Report this post to a Moderator
Rivendell
Frequent Contributor (1K+ posts)
Member # 19922

Icon 1 posted      Profile for Rivendell     Send New Private Message       Edit/Delete Post   Reply With Quote 
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.

Posts: 1353 | From Midwest | Registered: Apr 2009  |  IP: Logged | Report this post to a Moderator
   

Quick Reply
Message:

HTML is not enabled.
UBB Code is enabled.

Instant Graemlins
   


Post New Topic  New Poll  Post A Reply Close Topic   Feature Topic   Move Topic   Delete Topic next oldest topic   next newest topic
 - Printer-friendly view of this topic
Hop To:


Contact Us | LymeNet home page | Privacy Statement

Powered by UBB.classic™ 6.7.3


The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:

The Lyme Disease Network of New Jersey
907 Pebble Creek Court, Pennington, NJ 08534 USA


| Flash Discussion | Support Groups | On-Line Library
Legal Resources | Medical Abstracts | Newsletter | Books
Pictures | Site Search | Links | Help/Questions
About LymeNet | Contact Us

© 1993-2020 The Lyme Disease Network of New Jersey, Inc.
All Rights Reserved.
Use of the LymeNet Site is subject to Terms and Conditions.