Cmac3721

I have pots and live in the northern virginia area. I have friends but it would be cool to meet other people in the struggle. Just throwing a message in a bottle out there let me know.

lol nah nobody

Just wondering, sometimes I feel like I'm alone out here.

Thanks for all the responses guys, this has been some very helpful information I think i might try more chiropractic and accupuncture.

Does anybody on here have any other type of autonomic nervous system issues like GP, mine came simultaneously with P.O.T.S . My Gp is mild compared to most on here and has had small improvements with ativan over a 2 year period. Why ativan is helping? I'm unsure for the most part but ativan seems to have an element which promotes muscle relaxation which could in turn relax my stomach muscles.

---- My next question is has anybody on here had a diagnoses of POTS or other ANS issues associated with their GP, and if so has anybody tried a pyloroplasty with any success. Dr's also suspect my nissen has slipped but I doubt that's causing all the issues 5 years after the surgery. Any information would be greatly appreciated.

Man I'm confused if Lyme is a factor or not, I tested positive for the antibodies but negative for the western blot.

Can pots get better if your aggressive with the lyme?

OK i went to a regular infectiuos disease doctor, and the blood work was done at quest diagnostics I'm insure which lab it was sent to, but they said my disease isn't active right NOW, but I had lyme antibodies present I'm not even sure what this means or what to do about. The antibiotics made me feel a little bit beffer but I think I need more extensive action, my stomach has slowed down too and I heard lyme can cause gut palsy. I still eat ok but have def dropped weight over the years, what actions can I take and do any of these lyme litterate doctors deal with pots.

--- Somebody let me know PLEASE.

Hi I have has pots for about a year and a half now, and I just tested positive for Lyme anti bodies about 2 weeks ago, the infectious disease dr said that there is a chance that Lyme could cause or make pots worse he thinks I may have had it for awhile. Is their anybody out there that has Lyme that developed into pots, because he didn't have much treatment suggestions other then the antibiotics I already took. I feel like I'm not being aggressive enough with this and maybe if I go after Lyme more it could help my pots. Not only that but what if pots is a manifestation of late Lyme disease or something like that. I feel like I have a piece to the pots puzzle here or am I reaching?

Has to be something out there...I'm confused at this point just wish I had an appetite again.

Yeah look into it!

I just had an uper and lower scope done, and the upper part of it revealed that my nissen wrap has came loose. I don't even know if that's dangerous???? However, I don't get heartburn like I use to and I did develop POTS, which has effected my heart rate and digestion I'm wondering if this wrap could be irritating the vagus nerve, because my sypmtoms are not as severe as some people, I don't have nausea or vomitting, I don't have an appetite a lot of the time but I still can eat sometimes like a full pizza or a burger it's weird, I have lost a good amount of weight, but i seem stable around 141 (normal being 170)



--- Could this loose wrap be giving my vagus nerve some irritation instead of direct damage? What about scar tissue, I know revising the wrap is very risky considering more vagal nerve damage which is one of the big causes of pots. Or maybe I should have it done away with completely? I don't know what to do at this point....

I really hope so, my cardiovascular is mild by my gastroparesis can be tough to deal with im trying to excercise to make it better but no luck yet.

I guess I don't have hyper pots then, 1/6 blood tests showed signs of high levels, the other 5 did not seem with the 24 hour urine test.

Yeah I was already tested for regular pots which came back as mild cardio vascular wise but the gastro symptoms have been really hard on me, I was wondering if ativan could throw a diagnoses for specifically hyper-pots that it would lower the norepenphrine/ephinephrine so if I did have it. It would mask it, most doctors I talk to though say this isn't possible which doesn't make a lot of sense to me. Can ativan lower those levels?

By throw the test I mean a false negative for hyperpots because of the ativan.

By the way how much ativan were you taking, because I'm taking it now and kinda worried about dependence..

I have a big question, do you think the same thing could happen after 7 years of continual SSRI use?? Mine seemed to develop after slowly coming off lexapro?

If you're taking ativan and get tested for hyper pots would that effect the levels of Noropenphrine/epinephrine making it lower? I'm wondering if a pill like that could throw the test.

Jennifer what could of digestive issues were you experiening if you don't mind me asking?