Ashelton80 Posted January 2, 2013 Report Share Posted January 2, 2013 Hey guys, just wanted to let you know that yesterday I re-started Dr. Levine's exercise protocol. I can't really say re-starting as the first go around I sort of took his recommendations and did my own thing. That probably got me to a 70% recovery at the time.I do have an appointment with my autonomic dr at Vanderbilt on the 17th and an Integrated Functional MD on the 22nd. I am also in the process of getting an appointment with Dr. Afrin, but it has taken over a month and I still don't have anything scheduled. I know for me personally, I am just tired of sitting around waiting on Dr's appointments. I have waited over 2 months for the Integrated MD appointment already. So, I thought while I was waiting that I could at least have something in the works that I know will at least help in the mean time. I am also going to try very hard to do the exercise exactly the way he has it outlined in the protocol. I have been in contact with a couple of other girls that had complete resolution of symptoms with the exercise protocol. They are both back to work full time and still work out 5 days a week. No meds, no major salt/fluid loading, just normal amounts. I DREAM of that. Wish me luck, yesterday was Day 1 and I made it on my 50 minutes bike ride without issue. I will say that I have worked out on and off for over a year, so that's probably why it wasn't too terrible. I do feel a little worse today, but I know after a few weeks I should start to see improvement. At least thats how it was the last time. I'll keep everyone updated.Happy New Year! Quote Link to comment Share on other sites More sharing options...
jkoconne Posted January 2, 2013 Report Share Posted January 2, 2013 Hi, Good luck to you! Please let me know how you do with the protocol. My neuro (pots specialist) advised agaisnt me doing it, said I would get worn out and set back. He created his own plan for me. but Ive heard great and bad things about peoples experiences. so if you're up to it, keep us posted on your progress!And im in the same boat with doc appointments! Very frustrating! Quote Link to comment Share on other sites More sharing options...
misstraci Posted January 2, 2013 Report Share Posted January 2, 2013 Good luck with it! How do you find info on the protocal you're doing? Do you have to be a patient or is it available somewhere without the consultation?Thanks, yes, please keep us posted!!! Quote Link to comment Share on other sites More sharing options...
looneymom Posted January 2, 2013 Report Share Posted January 2, 2013 How old do you need to be to participate in this program? My son is twelve but can only stand for about 30 minutes due to pain issues. Is this program online somewhere? Quote Link to comment Share on other sites More sharing options...
corina Posted January 3, 2013 Report Share Posted January 3, 2013 Good luck Ashelton! Quote Link to comment Share on other sites More sharing options...
Ashelton80 Posted January 3, 2013 Author Report Share Posted January 3, 2013 Thanks guys! Well I've already had a set back. Not due to the exercise, but I have a Urinary Tract Infection. UGHHHHH I've had it for almost 2 weeks now, but the symptoms would come and go. Well today it was bad and I decided to go in and let them check and sure enough I have bacteria and blood in my urine. That explains the horrible pain. So it wasn't mast cell after all. Really trying hard not to let this get me down today and hopefully be able to start up the exercise after a day or two of antibiotics. So frustrating!!!! Quote Link to comment Share on other sites More sharing options...
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