Infusions For Pots

[surfgirl14]

Hey Guys. I know I haven't been on here in a while but I have been really sick in and out of the hospital. Anyways I have a question. As of right now I get 2 liters of lactated ringers over a 3 hour period twice a week for my POTS. It works to some extent but not as much as it used to. So my question is does anyone know of or do different infusion for POTS? I have heard of IVIG but am incredibally iffy on that it seems dangerous.. can you even get that at a outpatient infusion place? But anyways so yea any ideas or anyone do other infusions?

Thanks

[FarmerAmy]

Sorry you've been so sick! I'm in the same place you are. The LRs aren't really doing anything for me. I've considered trying a saline IV or maybe a Myers Cocktail, but I haven't done either of those yet. Good luck!

[Dizzysillyak]

I'd like to find something like this that worked too.

I've tried meyer's cocktails + glutathione push but it didn't do anything for my cfs or oi. I was just

as tired and still had oh and pots. Saline ivs never made any difference. I stay well hydrated tho.

The only improvement I saw from these ivs was that when I started these I had severe pain at the injection site

and down my arm if we tried to do these too quickly. By the 5th - 6th iv, I didn't have any pain

and we could do these quicker. So the time frame went from 4 hrs to 1 - 1/2 hrs. My veins were

still hard to find after all these tho. Either that or the nurse wasn't very good at finding a vein.

I've had more success with diet (wahls / paleo) and mast cell meds. I suspect my oi is from angioedema from

mast cells or food and chemical intolerances or allergies. I'm actually allergic to most things on the planet

I'm a celiac too tho so eating gluten for 50 years wasn't good for my body. Nerve damage is a possibility.

Tc .. D

[Kellysavedbygrace]

I've never tried anything but saline IV. I usually get 2 liters over a 2-3 HR period. It usually takes them 15-90 mins to get the IV going because of difficult veins and it really helps me for about 24 hrs.

I use it as a bailout when I'm crashing hard or in preparation for a big event or plane flight. I can drink till the cows come home and still not have enough blood flow. It seems the problem for me is at the cellular level so the extra two liters quick will pick me up. It takes about 4 hrs after infusion to feel full effect. Within 36 hrs it is all gone.

My primary doc has a research lab on the first floor of his building. I go there and can call the nurse as needed. It is a great setup.

[Mindy Trotter]

Have any of you looked into Lyme and POTS?

[Ryry1305]

Yes, I had lyme and think that it definitely caused my POTs. I went to ER with Tachycardia last njght and requested fluids. Seems like it did nothing. My heart has been going crazy lately.