Need Help, now have POTS.

Hi,

I joined a year ago. Was dx’d in 2014 due to a pos IgM & correlated symptoms. Treated for 6 mos aggressively and improved only to gradually have symptoms return in 2019. They’ve merely changed.

My symptoms are largely neurological with next to no joint pain. They mainly resemble Bartonella but i had a negative Galaxy and negative blood Labcorp for bartonella.

Since all of this, I’ve learned about heavy metal toxicity and how it can greatly contribute to Lyme and candida both of which I’ve suffered. I have had metal fillings since 1992 and have removed five of seven in the last year, but that is also a dicey undertaking. Ultimately, I plan on treating that but have to concentrate on the POTS, right now.

Now I’ve developed POTS and am really struggling. None of the Mycin abx’s are an option bc of my cardiac symptoms.

Though I believe it’s an inflamed Vagus that’s causing my problems. I tried Rifampin and that was working but it raised my cortisol and messed me up. So that’s out.

I’m going to try Bicillin but it seemed weak in penetrating to the vagus in the past. Fluoroquinolones are out of the question & herbs aren’t strong enough. I know, I’m a complicated case.

What are some people’s experience? I’m also on the hyper mobility spectrum. Thanks!

Post Edited (ElizKA26) : 7/2/2021 9:27:38 AM (GMT-6)

Girlie, thanks! I’ve heard of rifabutin and I remember mentioning it to my doctors. I’ll try again. How’s this different from rifampin? Does it raise cortisol? Thanks again!

Okay, thank you! I’ll ask!

I think rifabutin has less side effects on liver. It might also be stronger? You can also do bactrim for bartonella. It’s pretty strong and good against Lyme and babesia too.

I’m guessing your cortisol, is high considering the way you seem so wary to raise it. I think Leon balm tea lowers that, but it’ll also lower you blood pressure a little.

Is your blood pressure low? You can use midodrine then to raise it and eat lots of salt. Cardiologist I saw for pots said calf muscles act as second hearts so in theory strengthening them should help. Omega 3 helped my dysautonomia because it decrease inflammation in my head.

Post Edited (Bailey) : 7/2/2021 2:15:27 PM (GMT-6)

Yeah midodrine half life is 4 hours, I am sensitive to it wearing off so I take mine every 2 hours. I think sometimes you can take certain forms of Sudafed to help too. Licorice helps you retain salt so you retain more water thus raising your bp. If licorice helps you can try florineff which a prescription med that acts like strong licorice root