POTS can be secondary to lots of these infections, not just bartonella, so it might be leftover damage, sorry to say. That said, when you are healthier overall, it is very likely to resolve. For me, POTS flares when I am dehydrated or have not slept enough, when I'm herxing, when I'm depleted overall from pushing myself, when the barometric pressure drops in winter, when i feel very nervous, or when I am sick from a chronic or acute infection.
I agree with skipping the beta blocker, especially if you have lower BP already and if fatigue is one of your symptoms. There are other drugs used to treat it, but they all are pretty hit-or-miss in terms of being helpful. The best remedy for me has been high salt intake (1.5 tsp of non-iodized natural salt per day) along with significant hydration (3L water per day). During flares, I find compression stockings helpful as well.
I have found a cardiologist who specializes in dysautonomia so I know it's possible, but most doctors who specialize in dysautonomia are neurologists because it's a nervous system issue fundamentally, not a cardiology issue. True specialists are few and far between, but maybe a different specialist would be more helpful for you. These infections can have so very many neurological symptoms, so focus on treatments that encourage neurological healing. I have found a few things helpful, including essential oils, acupressure points, DNRS, tapping (EFT), and vagus nerve stimulation. Herbs people use for neuro health are burbur, pinella, cinnamon, CBD, and lion's mane (a mushroom). Some also find magnesium and alpha-lipoic acid helpful. An herbal beta blocker you could try is butterbur.
A treadmill sounds risky for someone with active POTS, at least it would be for me. Have you considered recumbent exercise, floor-based yoga or pilates, or a rowing machine?
Good luck, and hang in there. POTS is so limiting and frustrating, but it's very likely to resolve as other things do. In the mean time, don't hesitate to use a wheelchair or rollator to keep yourself safe as you navigate outings and appointments.
Thanks for all the info. I’m actually very high functioning for the most part (I work, drive around for work etc) when I’m treating and I was completely symptom free last August until this January. I only missed working and driving during October after having a bad reaction to Rifampin twice (never touching it again). Do you know what other drugs are used to treat POTS besides beta blockers? What about
the essential oils - is there a specific one to find?
I have increased my salt intake but decreased my fluid intake due to being chronically low on sodium after i spent a night in the hospital 2 weeks ago for low sodium (which occurred after 4 days on Rifampin). My cardiologist says I’m part of the population that are considered sodium wasters - aka I consume as much salt as I want. My bloodwork for years has always had sodium just outside the low end of the normal range 133-135ish, normal is about
I’ve been trying to do cardio because I figure improving my cardiac output/deconditioning might be able to assist with the symptoms. I just gave my mom her rowing machine back last week because my basement is getting finished into an in-law. I can certainly try to do more floor based activities! Perhaps I’ll look into compression socks as well. I figure if I can somehow control the POTS symptoms my quality of life will be greatly improved while I finish knocking out Bart.
Where would you get DNRS and tapping(EFT) done? Not familiar with those. I have never taken Burbur or Pinella - I currently take circumin, vitamin D, methyl b12, L-arginine, NAC, glutathione, and omega 3. I do take cinnamon and ginger liquid extracts, and Also magnesium every so often.
Did you ever have a Tilt table test? I’m going next Friday - perhaps if it comes back positive they’ll refer me to a specialist.