My father and best friend is my biggest supporter in my journey to get well.
He comes with me on ever appt. I ever have and I try to explain to him that I never had POTS until I started treating my Lyme back in January.
I did develop Tachycardia early on about 2 years ago, but it was just Tachycardia and not positional as it is now.
When I had a pos. tilt table test, I became hypotensive and had orthostatic tachycardia, but since I've been treating, my BP is always normal sitting, standing, or just laying down.
I do tire easily and have every symptom listed on POTS, but if you take away the positional stuff, everyone on here has the symptoms they talk about with pots.
When you read up on POTS, they talk about a possible cause being viral or bacterial in nature, but they don't know what that infection might be.
Appreciate your support so I can get my father on the same page as I am.
Thanks in advance,
Lymetwister
Posted by MorningSong (Member # 19989) on :
Lymetwister~
I never had POTS until after Lyme and co-infections. I believe their related.
Posted by glm1111 (Member # 16556) on :
I had SEVERE pots when I first got sick with Lyme and it was so bad I kept getting rushed to the hospital via ambulance once a week because I was passing out. It was definitely Lyme related for me.
Posted by Geneal (Member # 10375) on :
POTs and NMH are definitely tied into my Lyme and co-infections.
However, I suspect maybe.....babesia.
When I started treating babesia is when I developed POTs/NMH.
Hugs,
Geneal
Posted by Amy C (Member # 19297) on :
I started have POTs symptoms when I was a teenager. I am 34 now. So that may have been an early clue for me? Since I suspect I was born with lyme. Of course all the dr's dismissed it!
Posted by disturbedme (Member # 12346) on :
I wish I knew if I had POTS. My LLMD doesn't want me to have a tilt table test and I'd do the ANSAR testing or other testing so I could know, but insurance does not help with those and I really don't have the money right now to test for it THAT way). I think I do, but I'm not entirely sure. And since I've been on treatment it hasn't been as bad. I've had extremely low blood pressure and constant tachycardia though. I'm on Toprol to control constant tachycardia (which is not due to just standing or getting up too fast -- I have CHRONIC tachycardia no matter what I'm doing). I was also just put on Florinef for my chronicly crazy low blood pressure.
Both of which have helped SOOOO much.
But if my tachycardia is CHRONIC and doesn't just happen upon standing or moving around, does that equal no POTS?
Posted by Alv (Member # 15192) on :
I do beilive is babesia related!
Posted by BlueCheetah (Member # 18626) on :
I believe it is Babesia related as well. Mine always gets worse during a Babesia herx.
I am to have the ANSAR test done too because my cardiologist has not been able to help at all with my symptoms.
Posted by Amy C (Member # 19297) on :
I wish I knew if I had Babesia. I have terrible night sweats!
I do get air hunger but not like others describe. It's more like when I am hot or it's humid or something to do with heat.
I know I have Bart so not sure if the symptoms can overlap?
Anyone know the best test for Babs?
Posted by Alv (Member # 15192) on :
Igenex..but as I see your son has ASPERGERS ..he has lyme and BABESIOSIS and bart as well...that is what my son has
And my son has MICROTI , duncani and divergens...this is what makes him as aspergers -BABESIA
Posted by beths (Member # 18864) on :
I got bit..got POTS 3 months later, so yes I believe they are from lyme or babesia
Posted by m0joey (Member # 13494) on :
It may be related to pathogens in the heart, but it is almost certainly related to adrenals too.
Posted by lymeparfait (Member # 14268) on :
Definitely the first symptom for me and one child.
Treatment for lyme helped tremendously.
Posted by Alv (Member # 15192) on :
Mojoy my adrenals are fine but my heart is strugling only with babesia and this nis what I suffer for 20 years as babesia settled in my heart .
Still have cyst there.But since the free forms are not in blood right now my heart has not given me problem anymore...at least in my case and from going back to recall my eksperince..WHEN babs came in the whole story started with my pot problems.
Every time I take the dosages to kill it I feel that is going right there first than in my brain .
I used to pass out on top of stars , showers , bathroom ...felt several times..the ER was scared about me all the time and I used to become WHITE like no blood was running in my body.
AGAIN my adrenals are OK..have checked them in my case.This is the first thing MY ND has suported when I HAVE FULL BLOWN lyme and coinfections since 2 years ago.
Also all that numbnees and dizzenes that I have had lately was all from BABS as others were not active but I have had a very high load of babesia .3 strains and WA-1 was one of them .
Posted by karenl (Member # 17753) on :
For other who never heard the pord pots before ( I just googled, do not know if it is a good article) http://www.dinet.org/what_causes_pots.htm Posted by R62 (Member # 18531) on :
Dinet is a good site for POTS info. I had OI since I was a teenager. I am not convinced it is lyme related. It could be pathogen related, toxin related. My sister had it so bad she was bedridden for years. She never treated lyme and she is fine now. She could still have it, but ??
My tachtycardia went wild when i had my first babesia attack.. I think it was a babesia attack or herx. I was drinking alot of ginger tea at the time, so?? Chills, shakes, tachy and that was it. one night BAM then tachy ever since, though better after babesia treatment 4.5 months and ??. Not as tachy and less gray outs.
Posted by R62 (Member # 18531) on :
problems related to hypothalamus, heart (as in dilation as per cheney), blood volume related to renin & aldosterone, something about adrenals tumors and some ganglia along spine (sister had that looked into), constriction and dilation of blood vessels.. Im sure there are more theories.
Posted by Lymetoo (Member # 743) on :
The best test for babesia is from Fry Lab.. then Igenex.
Finding out if you have it is ESSENTIAL to your recovery!!
Yes, I think POTS is VERY closely connected to Lyme.