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  1. Anyone in here have a dx of POTS but has all their autonomic testing come back normal? My Valsalva, deep breathing and QSART all came back normal as normal can be.
  2. I’m on my 2nd LLMD....first one was a bust. I take Zyrtec daily year round for allergies. I dont think I have mast cell problems....I don’t have flushing episodes. Im sick of all this crap....
  3. I have a form of POTS that comes and goes. I got Lyme in 2004 and got POTS soon thereafter. All my ANS testing and blood work (mayo panel) comes back normal but I have a small increase in HR upon standing and dizziness although it’s quite mild compared to stories that I read here, but it’s enough to upset my life. HR went from 65 to 95....sometimes as high as 120. From 2004-2006 I didn’t know what I had....then the Lyme Dx came along. I recovered from my symptoms by 2007 and had a child. My Lyme insomnia came back for a few months but went away in time for me to have another child in 2009. Life was good until 2011 when I got a cold and my POTS and Lyme symptoms came back. 6 months of meds put me back in remission and then another cold in 2012 brought them back! 6 more months of meds and I was fine again. From 2013-2108 I was fine...no Lyme or POTS symptoms....I ran, did CrossFit, jumped played and worked 50 hours a week and sat in saunas with zero symptoms. I had many colds during this time but never got a Lyme flare. In Jaurary 2018 I got a cold and the Lyme POTS symptoms came back! 3 months on treatment resulted in me being able to put in 20k steps out in the summer heat and return to running, mowing the grass etc but I did notice that about once a month, I’d have literally a day where my heart would beat faster standing....every month like clockwork. The next day I’d be fine and run 5 miles. This pattern continuted until September when I got another cold. 3 weeks after the cold, and now 9 weeks later I’m back on Lyme treatment and my POTS symptoms are back at it! This time I have developed a higher resting heart rate (80 compared to 60) that doesn’t respond to beta blockers....I also get in increase in HR after eating that doesn’t respond to beta blockers! Symptoms I’ve never had before and freak me out! I’m beginning to think that I have some kind of autoimmune issue to all this. I’ve been reading about the newly discovered antibodies and whatnot and it kind of makes sense....but not completely. If someone had antibodies in their blood wrecking havoc on the nervous system, how could I literally be fine and then one day a month have symptoms? (Im on continueous BC pills so It’s not hormonal) I understand that things can wax and wane but I would sit in hot sauna’s and do strenous exercises in 110 degree heat and humidity with zero problems. I would “cut” and drop water weight for cross fit completions....if I had some low level of antibodies present (they aren’t just going to up an go away) wouldn’t the heat and dehydration and least make me feel worse? I just want to get off this Lyme/POTS roller coaster and figure out what is causing the flares! Anyone else literally have zero symptoms one day and them slight symptoms another only to have them disappear the next?
  4. Hi all, I have Lyme disease and I was in remission but a recent cold brought it back out! One of my worst symptoms is POTS....not horrible but it’s still no picinc. It stinks to have this back after finally being able to run again. I seem to have developed a new symptom that I never had before: my heart beats fast after eating and does not drop overnight. I have tried taking a beta blocker but it does nothing! I’m assuming it’s vagally induced? Anyone else have these problems? I’ve had ANS testing and all was normal. Just can’t figure out while a beat blocker has zero effect!
  5. Lyme is real...I have made so many improvements! Look for lyme if you just got sick literally one day from the next with no obvious stressor and your symptoms come and go and change!
  6. Does blood pooling wax and wane? I know I'm different since my nervous system is ok and I'm just dealing with cytokine issues dialating my veins, but some days I have very noticiable blood pooling in my legs and other days they look pretty much normal...I'm not doing anything different to induce these changes. POTS seemes to be a crazy disease but throw lyme in the mix and wow...
  7. Thanks for the words of encouragement! I'm just torn. I never had any problems in my other pregnancies. Sue I have lyme, babesia and bartonella along with reactivated viruses (HHV6, parvo virus and EBV) I am much better after treating the lyme but the most improvements came from treating babesia. I still have elevated cytokines...TNF and all my interlukines high. They vasodilate me and if I get a cold, virus or good old pregnant with its lovely high progeaterone levels it makes things worse. The only cure is getting rid of the infections that my body keeps trying to fight! At least my immune system is still fighting!
  8. Im currently 9 weeks pregnant with my third child. My first two pregnancies werea breeze but this one has left me dizzy 24/7. Im afraid I will loose my job...I work in sales. I have lyme and POTS like symptoms but no actual autonomic dysfunction per say...I just have a ton of cytokines causng vasodilation...or at least thats what my immunologist says. I dont take meds, except for antibiotics and florinef (lyme killed my adrenals) but my high risk OB let me try midrodrine...2.5 mgs to see if it helped me and it didnt...my blood pressure is fine 120/78 (which is slightly lower than normal, but everyones BP drops and blood flows to the baby in early pregnancy.standing sitting but I sill feel dizzy! My heart stays stable no kore than 95 standing...its just the dizziness. i dont really believe in abortion, but I feel,like if I keep going on I will break my body and be stuck like this forever...keep reading horror stories of how people are bedridden after birth, etc. My hubby is recovering from major heart surgery and I am the only means of income...and I have a great job that I cant afford to loose. Totally hoping for a miracle.
  9. I have been reading up on the internet about the most common case of POTS tends to be from some kind of nerve damage or neuropathy which causes veins not to constrict, blood to pool and y'all know the rest. My question is, how would medicine help? If nerves are damaged hoe would adding a medications like midodrine/stiumlants help stimulate veins to constrict and lessen pooling if the nerve endings don't receive the signals? Wouldn't they still stay vasodilator? Anyone know?
  10. Since I'm a Newbie maybe y'all can help me out. I'm having a hard time understanding how one can have blood pooling in the legs yet normal to high standing blood pressure? Isn't blood pressure especially the diastolic number a marker of peripheral resistance? What am I missing here? I was under the impression that blood pooling was the result of veins NOT constricting...so confused?
  11. Hello all…first time posting…long time browsing. I am a 30 years young and have chronic lyme, bartonella and babesia for the past 10 years and have some orthostatic issues as a result of these infections. My main symptom seems to be dizziness and blood pooling…despite me wearing 30-40 compression hose. I used to have horrible tachycardia all the time, laying, sitting, standing but that has improved greatly once I treated the lyme and although once in a blue moon I may get tachycardia on standing…it's not too bad maybe 100 or so up from 72 laying…again this is rare. Usually my orthostatic vitals are around 120/80 and 85-90 pulse…I am not on any POTS medications except florinef because the lyme depleted my aldosterone. My questions are I understand that vitals taken in my arm don't reflect what kind of blood flow is going to my head…I mean I know it's reduced because I pool blood. I have huge veins all over my body that I never had before…doc says it's from bartonella and that is why my laying blood pressure is lowish 108/68…I have excessive vasodilatation as long as those buggers are still making home in my veins. Anywho, why is my blood pressure normal standing? Is it because my arteries are constricting normally since they aren't affected by the bartonella, hence giving me normal readings, yet feeling dizzy because of reduced venous return and what the heck can I do about this? If I tried a vasoconstrictor drug wouldn't that increase my BP too much since it's normal anyway and I assume my arteries are constricting…I'm assuming they work on both veins and arteries and my veins seem to be the issue here. I sometimes get dizzy laying too…since my **** veins are so LARGE!! I have had autonomic testing done that all came back normal so since I have no "damage" the specialist here said its just a result of infection and will go away with it…which lyme takes forever to do away…so no treatment for me. I would like to feel better in the meantime. My hubby and I just lost a baby a few weeks ago, would have been our third and my last two pregnancies were high risk but I sailed through them…this one seemed to be more rough but I was only 10 weeks along. We would love to try again but I'd like to band aid this vein issue if at all possible before hand. Any suggestions or am I just a weird lymie lost in this world? I've had these orthostiatic issues since early lyme, they got way better with treatment and then came back when I got a really bad cold a year ago and have bounced around since then. That's when we figured out I had co infections too…what fun! Thanks all!
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