Jump to content


  • Content Count

  • Joined

  • Last visited

Community Reputation

0 Neutral

About taylortotmom

  • Rank
    Advanced Member
  • Birthday 01/11/1974

Contact Methods

  • Website URL
  • ICQ

Profile Information

  • Gender
  • Location
    Tallahassee, FL
  • Interests
    Full time mom to two adorable children. Diagnosed with MVP with severe dysautonomia, NCS, and tachy-brady Jan. 2003. Have a MS degree in Counseling.

Recent Profile Visitors

3,476 profile views
  1. I was on at home iv treatment for `18 months and it really helped my quality of life. I had a bag or two a day every day of lactated ringers which contain saline and a high dose of sodium. At the time, I had a port and I really loved having access to fluids as often as I needed them. However, the port became infected and I nearly died from sepsis so it is a not something to take likely. My expenses were paid by my private insurance. Hope this helps a little. Carmen
  2. Thanks everyone for all the replies. My cardio said it could help with cholesterol and metabolism. Upon researching it, I have found it is often used with patients with congestive heart failure. Since many of our sxs overlap with CHF- it would make sense for it to possibly help us. However, I was very wary about the potential for lowering BP. However, my cardio did not mention the lowering of the BP- and he definitely knows my history and issues with chronically low BP. Anyway, if I can find some I will likely try it out and let you all know Carmen
  3. Hi, everyone. My cardiologist suggested (actually he highly recommended) I start taking Co Q 10. Have any of you had experience with this- he was quite enthusiastic about it. I trust him and I have done some research myself- do any of you have firsthand experience? What specifically has it helped or not helped? Hope everyone is doing as well as you can- I have been very blessed with a mild remission over the past few months and received an excellent cardio visit/report on Friday- yay! Carmen
  4. I drink a gallon of Gatorade Rain (usually the green) a day. For some reason, the Rain is not as sweet.
  5. As you well know this disorder has no rhyme or reason. I'm sure you're not the only one that has not been helped through iv's. But let me add my two cents. I experience those sxs you describe WHENEVER I'm in an ER regardless what they do- I just cannot stop shaking (which does not help the no it's not psychomatic defense). I, personally, think that for me the shaking and getting cold pertains to the adrenaline rush I have when in the hospital- together with the fact hospitals are usually FREEZING. Another thing is what type of ivs do they give you? IV saline may not help- for me, lacta
  • Create New...