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CallieAndToby22

Vitals suddenly got worse.

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So my heart rate has always been high for which I take a beta blocker and my blood pressure has always been fine until now. For the past month my blood pressure is extremely low and my heart rate still high. Taking my beta blocker has been making me sick at night which never happened before. The local people aren't accepting new patients so my PCP said UF Shands of Mayo Jax but I have no idea where to go or who to see. I've had very bad experiences at both places having ME and IC. I know Mayo Jax has dysautnomia specialists but mayo is so so so so so conservative and tend to not think outside the box. Suggestions? 

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I didn't have great results at Mayo in Jax either. I'm not aware Shands is equipped for people like us. I heard that UAB in Birmingham, Alabama has a POTS clinic, but often POTS Clinics do other dysautonomia stuff. Have you considered trying them? I live in Orlando and my docs bypassed Shands. I would certainly like to know if you get good results at Shands though. Still waiting to find out who the new doctor is going to be at MUSC's POTS Clinic in Charleston, SC. I don't think they have hired yet.

Mayo declined to put me on florinef. My subsequent doctors were stunned. I don't know their rationale other than he was concerned about my weight. I think Mayo Jax only has one guy that is good with this stuff. He is a neurologist and I can't think of his name. Brain fog is real...

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3 hours ago, KiminOrlando said:

I didn't have great results at Mayo in Jax either. I'm not aware Shands is equipped for people like us. I heard that UAB in Birmingham, Alabama has a POTS clinic, but often POTS Clinics do other dysautonomia stuff. Have you considered trying them? I live in Orlando and my docs bypassed Shands. I would certainly like to know if you get good results at Shands though. Still waiting to find out who the new doctor is going to be at MUSC's POTS Clinic in Charleston, SC. I don't think they have hired yet.

Mayo declined to put me on florinef. My subsequent doctors were stunned. I don't know their rationale other than he was concerned about my weight. I think Mayo Jax only has one guy that is good with this stuff. He is a neurologist and I can't think of his name. Brain fog is real...

2 days ago Scientist Ron Davis found a biomarker to diagnose ME/cfs and have already started testing FDA meds on cells that have been stressed with saline. 

Anyhow, my PCP called with a local doctor recommendation. And out of like 40 reviews he has a 5 star review as a cardiologist but I didn't see anyhing about dysautonomia or pots. I'm too sick to travel far. 

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That is great news! Let us know how the new doctor is. We NEED some good ones in Florida. Hopefully this new treatment will work and get fast tracked with the FDA.

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7 hours ago, KiminOrlando said:

That is great news! Let us know how the new doctor is. We NEED some good ones in Florida. Hopefully this new treatment will work and get fast tracked with the FDA.

Dr. Charles Thompson in Pensacola was so great. He had hyper POTS himself but he actually got too sick to continue practice. He was just so good.  :(  :( But we do need more like him. 

Yes it is sad the way ME/cfs has been treated. This scientist's son is extremely ill with the disease so he's working with a team with passion and urgency. 

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I'm also extra extra exhausted. I get plenty of sleep and naps and it's not restorative. Now part of that is having ME/cfs but it's just been worse lately with this bp drop. I informed my PCP that I wanted to see the local guy so just waiting. 

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How did that Dr. Pandit go? I’m looking for a doctor in south Florida myself. Going through a major crisis with my heart rate and breathing problems

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On ‎7‎/‎4‎/‎2019 at 9:07 PM, RichGotsPots said:

How did that Dr. Pandit go? I’m looking for a doctor in south Florida myself. Going through a major crisis with my heart rate and breathing problems

His advice was to drink all day long and he knew I have severe Interstitial Cystitis. 

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I saw people talking about Dr. Triviano. Have you have any experience with him? I might give him a try. He is near Tampa I think.

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