Can you guys please help me? I literally don't know what to do. I'm not really getting answers from doctors or the internet and I'm not sure who to turn to anymore.
2.5 years ago at age 21 I had my first 'episode' and was soon diagnosed with Postural Orthostatic Tachycardia Syndrome (a form of dysautonomia). I recently I found out I had antibodies to Lyme and was never treated, so Lyme disease might be the cause of my POTS (starting treatment for it now). But I'm not sure if the symptoms I have now are from POTS or Lyme or what.
When I first got POTS, anytime I ate I went into these 'episodes', so I was scared to eat. Now it's switched, I will eat a normal meal (I'm gluten free and vegan besides eating eggs, I eat probably 1,600 calories a day), and 2hrs later my stomach tightens/convulses, I get lots of burping (even drinking water makes me burp), so much bloating that people have asked me if I was pregnant, I am SO hungry I could eat Anything in front of me, I start getting panicky, I get an irregular/racing heart rate, my body gets weak, lightheaded, tunnel vision, confused, tingly/shaky jaw and limbs, and all hell breaks loose until I take a TUMS or eat something heavy/filling (fruit won't do it!). On a really bad day I'll even wake up in the middle of the night confused, shaky, nauseous and STARVING. Mornings are worst. Walking or a deep tissue massage over my stomach Sort of helps, but it won't stop an episode. And it SUCKS when this happens while I'm at work in meetings and I need to pretend like I'm not about to faint right now. I've also gained 20lbs from this in 1.5yrs (which is NOT normal for me, I was always a skinny twig. Now I'm 5'3" at 125lbs). But never any pain thank God.
I went to the gastroenterologist recently and we did an ultrasound and an endoscopy, but they said my stomach/esophagus looks beautiful. In the past, a stool test showed bacteria in my gut was out of control and I had low bile, I had antibodies to gluten/sesame, I was CDC positive for having had Lyme through IGG markers but only had some IGM markers positive (so I question if I still have an active infection), my hormone tests show low DHEA and high cortisol (but I don't feel stressed? But I hear infections can do that), tachycardia upon standing and palpitations (aka POTS), a mild UTI, etc. My blood sugar is always perfect before, during and after episodes, I checked it regularly with my glucose monitor. -If my gut bacteria use to be out of control and I have horrible bloating, perhaps its SIBO or Candida? But I've tried supplements aimed towards killing yeast/bacteria/fungus in the gut and I see no difference. -If my bile was low, is something wrong with my gallbladder that DRs are not picking up? -Why would Tums stop the hunger if it was bacterial/yeast? If this is acid related, can that cause bloating/hunger? -If I have a gluten intolerance, does that mean I have like leaky gut? And would that cause crazy hunger/faint symptoms? -Does this have something to do with adrenal fatigue maybe? -Could I SOMEHOW be missing a glucose crash when I test every 15 minutes, making it reactive hypoglycemia? -Or could all of this just be LYME? I just don't know what to do from here or what tests I need to be taking.