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Fussybug

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About Fussybug

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    Detroit

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  1. POTS cardio recognized possible Mitochondrial Cytopathy. Recommended consult. Mitochondria Disease-focused Neurologist diagnosed me with Mitochondria Myopathy - Carnitine Deficiency. I began with Carnitor (L-carnitine) tablets and had GI reaction. I was switched to liquid Carnitor and GI reaction resolved. I am benefiting from the Carnitor (improved burning of muscles with exertion, improved stamina). He just added acetyl-L carnintine OTC. That form helps brain function as it was explained to me.
  2. Hi Sue I am following in your footsteps. VIP is at 160. No tumor (yet). Suspected involvement in my POTS and mast cell. The whys and hows still coming together. I would love the opportunity to swap information. Will PM you as well. Thanks for posting. Amy
  3. Feeling very fortunate.

  4. I had thought of that IHB. She already has doctors spread between Portland ME and southern NJ. So trying to keep her closer to home. Resources are running low. How are you doing, BTW? Send a PM when you are up to it!
  5. Hi I have a friend that has been treated for Lyme Disease. She has been told her remaining symptoms appear to be POTS and should be properly evaluated by an autonomic neurologist. I see Beth Israel - are there any other options in the Boston area or going up toward ME that would be an option for her. She is Portland. Thank you!!!!!
  6. Great, she is very excited. It is 20 minutes from her house. Thank you again!
  7. Friend has Lyme Disease diagnosed and being treated. However, POTS is looking like a significant part of unresolved symptoms. She would like a consult with a compassionate doctor in DC area. I passed along Dr Khurana in MD already. Is there someone closer? Thank you!
  8. Checking to see if a doctor is located near Cincinnati or Indianapolis. Also any new opinions about Dr Amir Zia in Bowling Green, KY. Thank you!
  9. Flower this happening to me too. I did infusion therapy last summer. Starting back up again this week. Maybe the TX heat, dryness is too much for me I don't know. I too follow my doctors fluid intake directions perfectly. My blood volume testing is in 4 weeks. Please keep me posted on any findings. Wish you well.
  10. Swimming has been the best. I had a flare up 8 weeks ago so I am off exercise pending testing with Dr Levine at end of August. He already told I won't be returning to the pool as a primary source of exercise. But I do feel as close to normal in the water, especially if a little cool. The therapy pool at rehab made me lightheaded and like a noodle.
  11. I first noticed the blood pooling while taking 4 weeks of Levaquin in Spring 2009. I was then diagnosed with POTS in Spring 2010. Prior to 2009 I was not complaining of POTS associated symptoms. In hindsight, they existed in a mild form but the Lyme and Babesia symptoms - chills, fevers, swollen lymph nodes, sore throats, fatigue, muscle aches, etc were most pronounced. Now those are all gone, and POTS is predominant.
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