POTS Assessment

I'd appreciate hearing any advice you might have about POTS testing and treatment. I'm asking because my LLMD doesn't seem to think I need to be formally tested or have treatment, but he's basing it on a quick "in office" test that he did recently while I was wearing strong compression stockings. I'm confused, because the first time he checked for POTS, pre-lyme treatment last year, he remarked that he was sure I was having a hard time with POTS based on my heart rate (again, during a short in office check)--and I was! (And continue to). I've never had a proper tilt table test or had treatment--but I do know I have pretty bad POTS symptoms, and they really impact on my life. For example, I have to put compression socks on before I even get out of bed in the morning. Without them, I can't even get through my morning routine, due to fatigue and lightheadedness. My Immunologist asked my LLMD to refer me to a POTS specialist (I'm being checked for MCAD), but the LLMD doesn't think it's necessary. I really trust my LLMD and know he is the expert, but my worry is that POTS symptoms really affect my life and I'm concerned I could be missing the chance for interventions. My LLMD told me to just eat more salty food, drink more water, and continue with the compression garments.

Does anyone know if you can accurately test for POTS if the patient is wearing compression garments? Should I try to push for a referral and tilt table testing? Do you have any other advice or wisdom about living with and treating POTS? I'm doing my best to research it, but there aren't many books out there, and without accurate knowledge of the degree of dysfunction, I don't know which "home strategies" to employ beyond those suggested by my LLMD.

You have most of them down, tbh. Besides compression garments, increased salt, laying down as much as possible etc.. there isn't a ton we can do. I had a test done a while back and had (have it) but there isn't any particular intervention for it considering it's really just a symptom. Treat the lyme and the POTS will go with it

You don't need to be "tested" For POTS. If you are having the symptoms of which is POTS then you are experiencing POTS.

Lyme creates POTS symptoms. You have Lyme. You're experiencing POTS symptoms. There's really nothing more to it.

Lyme created POTS is inflammation. Herbs to reduce inflammation as well as properly detoxing and hydrating will help.

Celie said...
Thank you, Aerose91. I appreciate your reply. At the moment, it's looking like I possibly could have successfully (🤞) treated the Lyme (and co.), as my LLMD told me in my last visit that I may not need any further rounds of abx (I haven't ruled out herbal protocols for the future, but will do anything to avoid the abx....) My understanding is that serious POTS can be treated with meds, and my doctor nearly put me on some. This is why I'm a bit confused by what happened when he did the blood pressure / heart rate check this week. I'm ultimately just looking to check every box so I can give my body every possible chance to recuperate / fight off whatever is left of all the infections I've "collected" over the years 😂 I'd also like to be physically active again without having to spend days in bed recuperating after the slightest exertion!

Have a good long weekend!

Have you looked into co infections? You must still have something thats causing it. I have bartonella and have dysautonomia bad

Thanks you all for your replies. This is helpful information.

Aerose91, I was diagnosed with Bart and mycoplasma, in addition to high likelihood of Lyme, and was treated for all. I think Bart is my main issue, because of the symptom picture and my hx (lots of exposure while was I involved in stray cat rescue when younger). My LLMD is monitoring whether more infection treatment is needed, but at the moment we're focusing on gut health, because my body can't cope with any aggressive treatment right now. I'm starting to wonder whether tne POTS could have been there from a young age (ie pre-Lyme and co). Now that I'm starting to learn about it, I recognize that I've had symptoms since childhood (blood pressure issues, fainting, dizziness, heat intolerance). But, at the end of the day, it's clear that all that really matters is coping as best as possible with the impacts.

I appreciate all the information and feedback. Thank you all and have a great rest of the weekend!