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RecipeForDisaster

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About RecipeForDisaster

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  1. Yeah, that happens a lot. This guy used to have great staff. I have several doctors with awful gatekeeper staff that don’t pass on messages and don’t let you talk with the doctors.
  2. My level is more than double the upper end of the limit. I can’t find a lot about what it actually means(other than associated with fatigue), but the doctor does a lot of research and I suspect he’s compiling data. He hasn’t gotten back to me after running a huge number of tests. My HGH is also a bit low. Just curious!
  3. Well, he’s not totally helpful but he does try. He moved and his new medical assistant is not so great....
  4. I had Moderna, finishing the course a few weeks ago, and had no issues except for one day of aches and malaise the day after the second dose. I have pretty bad hypotension and other symptoms in general.
  5. I know! I have good insurance, and she takes it, plus a lot out of pocket. I think I'd end up between a rock and a hard place with her, no matter how groundbreaking she was.
  6. She is an MD. It’s just like she doesn’t want to do that part!
  7. She’s in NY. I don’t know if she’d be that helpful without writing orders - now I need to convince another of my doctors to carry out her wishes? I don’t know if anyone else who does the immune system end of things.
  8. I found a great sounding doc here - she specializes in immune and allergy. Same kind of thing - lots of money up front, it costs money to ever talk with her office or ask a question, she won’t write orders, so many rules. I didn’t think it’d be worth the cost. Too bad, I am sure she is good.
  9. I also think that if you’re not dehydrated or hypotensive , they can’t understand why you’d need fluids, or why they’d help. I know in all of my years of training, there was never another reason taught to give fluids... it’s like giving extra potassium to someone with enough potassium, to them. I can see both sides of the coin, but man, can I ever tell you that it doesn’t matter what my vitals say if I need fluids. I always figured I’d bring some studies with me if I ever had to go to the ER (if I was alone with no one to place my IV?). The other day my BP wasn’t even that low, but
  10. I hope so too. This is kind of where I am - so far I don’t fit anywhere, but my doctors are mostly helping me anyway. A hematologist is doing a lot of it! It doesn’t matter it’s not his specialty, he can see what I need. So don’t worry about this yet...
  11. I’ve done it tons of times, and am still amazed by the effects... "hey, I’m happier than I was" "I can bend down to pick something up!"
  12. Oh yes, very much. I need 2L to make a big difference now, but it makes me feel like the old me. It’s crazy the little things we’ll discover later. For instance, my hands and feet were suddenly warm! That never happens no matter the temperature. I guess circulation helps!
  13. Unfortunately, oral salts and fluid haven’t helped my apparent blood volume issue. That’s why I’m dragging an IV pole around today, again...
  14. It wakes me partway through the night, if I can manage to go to sleep. Even on a lot of carbamazepine. I think part of this is from my CPAP mask touching me, but it fits better than any other and is loose. I haven’t found that ice helps. But as far as my tooth pain, yes, if I sleep until 6am, it is GONE at that time and gets worse as the day goes on. It used to get bad at 7pmish and has gradually moved to 8-9am! The under - tooth tenderness is much better, though. I’m positive it’s not my teeth, partly due to that, and partly because it does move (even if the worst of it is always in one secti
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