POTS

bro123 said...
Has anyone here had severe POTS go away on its own within a few years of treatment? Im talking not being able to stand for 2-3 minutes severe. What has helped it go away completely. Im not interested in DNRS and stuff like that.

My pots wasn’t as severe as yours, but what has had it go away was treating the infections - particularly Bartonella.

Have you treated bart yet?

Hi, Bro. Sorry this is still such a troubling issue for you.

My POTS was actually more severe than that, not able to stand up for a full minute at many points in time. I crawled to the bathroom for several months because I could not stand at all. I hear you that you're not interested in DNRS. The other things that helped me were the curcumin I was taking for MCAS (I think this quelled some of my nervous system over-reactions), ingesting 1-2 teaspoons of Himalayan salt per day, and hydrating the proper amount (I had been over-hydrating).

I also used compression garments, but I'm not sure those helped much because for some reason blood pooling in the legs never happened for me (I don't think I was ever able to be upright long enough!).

Another thing I found helpful (although this might fall into the "things like that" category) is using a pulse oximeter when in a safe environment (like sitting up in bed or a comfy chair) and trying to "breathe down" my heart rate. I'm not sure how to describe it except that I figured out a way to use deep and slow breathing (maybe impacting my vagus nerve) to decrease my heart rate. I think over time this helped, and if nothing else, it was nice psychologically to see that I could have a conscious effect on my out-of-control heart behavior. That helped to get me out of the neurological rut that made POTS keep happening, I think.

My POTS/dysautonomia specialist (Lyme-literate) said that she starts everyone on proper hydration, high salt, compression garments, and nervous system support techniques before trying the drugs, but that she does use the drugs for folks who need more help. They just can be so hit-or-miss that she likes to try the other things first. She recommended salt tablets that athletes use, so the sodium was balanced with other electrolytes, but I didn't try them.

The other dysautonomia specialist in my area (very big name in the field) uses an extensive battery of tests and diagnoses practically everyone with small fiber neuropathy, offering them IVIG. I mention this because unfortunately, as I'm sure you've noticed, there's no standard practice around this. So frustrating!

bro123 said...
Thank you everyone for the replies. I was more wondering did treating the infection resolve the pots so that other treatment for pots wasn't necessary. Im aware that there are pharm meds and salt and compressions for it. I was more interested does treating the infection cure the pots. Or will I have to treat pots for the rest of my life

I wasn't having any dysautonomia problems when I was on Disulfiram. After Disulfiram they came back worse than I had ever experienced before. My experience with DSF leads me to suspect that effective treatment does help POTS symptoms.

bro123 said...
Gotcha thanks Lyme24! Im hoping it goes away with time and treatment. How has your treatment been with Dr. J so far? Any improvements?

No improvements, I'm kind of frustrated, but, based on symptoms I've thought for awhile now that Bart and maybe persister microbes were going to be where I made progress if I ever did make progress. That treatment should start my next appointment. They want me to come to the office my next appointment. Got to figure out when I can get to DC. I've really lacked any motivation to do the tasks I'm supposed to do. After 7 years of this crap I'm just tired. I need to get some blood taken and they want to check my gallbladder with a HIDA scan. Did they have you do a hida scan?

How is your treatment going?

That's awesome progress you have made! Being close to functional is great news. Hopefully your progress keeps going in a positive direction.

What do the doctors in your family say? Hopefully they approach you with respect instead of ridicule. I'd tell them that I am more than happy to have a conversation, but if all I get is ridicule I'm walking away.

The treatment working well for you is evidence towards the chronic infection hypothesis. I have had people try to tell me that antibiotics have an anti-inflammatory element plus maybe an immune suppression element and that's why i feels like they work. Yet the times I've tried to come off anti-microbials and I've focused on the most powerful anti-inflammatory supplements my previous doctor had prescribed plus lifestyle changes I have relapsed quickly. I didn't buy their argument.

I'm curious. What sent you down the Lyme path?

Post Edited (Lymie24) : 8/30/2022 3:16:18 PM (GMT-7)

Sorry to hear your having some issues crop up Girlie. I can't complain about how far DC is compared to you lol. It's about a 10 hour drive for me. Sucks, but much cheaper than two round trip airline tickets.

Did they have you go through gallbladder stuff (HIDA scan)?

Girlie said...

Lymie24 said...
Sorry to hear your having some issues crop up Girlie. I can't complain about how far DC is compared to you lol. It's about a 10 hour drive for me. Sucks, but much cheaper than two round trip airline tickets.

Did they have you go through gallbladder stuff (HIDA scan)?

No hida scan for me.
I do recall him (initial lengthy appointment) palpating my abdomen - can’t recall if that was to determine how my gallbladder was ok?

Gotcha. Yeah I had the same physical examination. Don't think they found anything through palpitating the abdomen, but I have lots of gut symptoms. I'm guessing that drove their want for gallbladder testing.

I'm going to do the test, but I'm a little put off by how much they focus on the gallbladder. It comes off, to me, as kind of their "thing". Sometimes these trailblazing doctors want to be known as making a big leap forward in a certain aspect of a certain disease. I haven't heard any other Lyme doc focus on the gallbladder like I've seen at Jemsek clinic.

I really became skeptical once I watched one of their Q@As where Jemsek mentioned he teams with a local surgeon to take out gallbladders he suspects are diseased despite testing that comes back normal. (To be fair, I would need to watch that video again to quote him more accurately and not misrepresent what he said) This seems sooooooo shady to me. Really through me off.