lymetwister
Frequent Contributor (1K+ posts)
Member # 19590
posted
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
Posts: 1227 | From District of Columbia | Registered: Mar 2009
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I never had POTS until after Lyme and co-infections. I believe their related.
Posts: 515 | From In His Loving Care | Registered: Apr 2009
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glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
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.
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
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
Posts: 6250 | From Louisiana | Registered: Oct 2006
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posted
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!
-------------------- My lyme disease blog: http://lymetimes3.blogspot.com/ One BIG Lyme family! I tested CDC + 10/08 My mom Igenex + 11/08 & My brother Igenex + 4/09, My 2 boys some + & IND bands, clinical diagnosis 3/09 (youngest has Aspergers too) Posts: 470 | From Painesville, Ohio | Registered: Mar 2009
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disturbedme
Frequent Contributor (1K+ posts)
Member # 12346
posted
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?
-------------------- One can never consent to creep when one feels an impulse to soar. ~ Helen Keller
My Lyme Story Posts: 2965 | From Land of Confusion (bitten in KS, moved to PA, now living in MD) | Registered: Jun 2007
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Alv
Unregistered
posted
I do beilive is babesia related!
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posted
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?
-------------------- My lyme disease blog: http://lymetimes3.blogspot.com/ One BIG Lyme family! I tested CDC + 10/08 My mom Igenex + 11/08 & My brother Igenex + 4/09, My 2 boys some + & IND bands, clinical diagnosis 3/09 (youngest has Aspergers too) Posts: 470 | From Painesville, Ohio | Registered: Mar 2009
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Alv
Unregistered
posted
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
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beths
Frequent Contributor (1K+ posts)
Member # 18864
posted
I got bit..got POTS 3 months later, so yes I believe they are from lyme or babesia
Posts: 1276 | From maryland | Registered: Jan 2009
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posted
It may be related to pathogens in the heart, but it is almost certainly related to adrenals too.
Posts: 713 | From Los Angeles | Registered: Oct 2007
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lymeparfait
Unregistered
posted
Definitely the first symptom for me and one child.
Treatment for lyme helped tremendously.
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Alv
Unregistered
posted
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 .
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karenl
Frequent Contributor (1K+ posts)
Member # 17753
posted
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.
Posts: 861 | From USA | Registered: Dec 2008
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posted
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.
Posts: 861 | From USA | Registered: Dec 2008
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cb Posts: 669 | From somewherebetweentherocks | Registered: Mar 2008
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