Has anyone been to the FFC's PLEASE RESPOND

Discussion in 'Fibromyalgia Main Forum' started by fmcurepls, Jul 1, 2006.

  1. fmcurepls

    fmcurepls New Member

    Has anyone been to any of the fibromyalgia and fatigue centers. Were they helpful. I have an appointment at the end of July.
    [This Message was Edited on 07/01/2006]
    [This Message was Edited on 07/01/2006]
    [This Message was Edited on 07/01/2006]
  2. fmcurepls

    fmcurepls New Member

    THANK YOU FOR RESPONDING.
  3. fmcurepls

    fmcurepls New Member

    WHAT DID THEY FIND IN YOUR LAB WORKS THAT YOUR DOCTOR'S BEFORE COULDN'T FIND. ARE YOU FEELING ANY BETTER?

    THANK YOU,

    SHARON
  4. fmcurepls

    fmcurepls New Member

    I AM GOING TO THE FFC IN ATLANTA. WHICH ONE DO YOU GO TO?
    DO YOU LIVE OUT OF THE STATE WHERE THE FCC IS LOCATED. I WILL BE AN OUT OF TOWN PATIENT SO I KNOW THE TREATMENT WILL BE MORE DIFFICULT UNLESS I CAN FIND A DOCTOR IN SOUTH FLORIDA WHO WILL GIVE ME THE IV'S, ETC.

    SHARON
  5. fmcurepls

    fmcurepls New Member

    THANK YOU SO MUCH FOR YOUR RESPONSE. I HAVE BEEN READING A LOT OF NEGATIVE THINGS. WHAT ARE YOUR SYMPTOMS AND HOW LONG HAVE YOU HAD FM? MY MAIN SYMPTOMS ARE SLEEP PROBLEMS,
    PAIN, HORRIBLE HEADACHES, DIZZINESS, FATIGUE AND DISEQUILIBRIUM. I AM WORRIED ABOUT THE EXPENSE. MY INSURANCE SHOULD REIMBURSE ME FOR THE VISITS AND THE PRESCRIPTIONS ATLEAST 70%. I HOPE SO. I HAVE TO STAY IN BED ALMOST EVERYDAY WHICH IS VERY DIFFICULT AS I HAVE TWIN BOYS THAT ARE 13 YEARS OLD. THANK GOD I HAVE A VERY COMPASSIONATE AND HELPFUL BOYFRIEND. I HOPE YOU START FEELING GREAT!!

    SHARON
  6. jbgoth

    jbgoth New Member

    I just went to the FFC in Atlanta. I live in Aventura/Miami. So, im an out of town patient too. I had a ton of blood drawn and was given two supplements. She also ordered some nystatin for me.

    Did you make an appointment yet?

    BTW, i also have lyme disease.

    Jordan
  7. JolieLuLu

    JolieLuLu New Member

    Hiya!

    I was diagnosed with CFS. I have profound fatigue and I am not able to take care of my children. I have a 22 month old who is crazy wild. I have aches and muscle pain. My brain is fried and I cry all the time. I also have a thyroid problem which was not responding to regular synthroid. I was given T3 which my endo would not prescribe. I am taking cortisol for fatigued adrenals and I learned I am severly anemic!!! A good start for me! All of these issues need to be stable before they treat the viruses and bacterias, etc. I am focused on what is at hand knowing i will be setting stage for what is to come.

    One step at a time:)
    jolie
  8. Countrymom

    Countrymom New Member

    I go to Atlanta also. Are you on lymenet? I'll look you upover there if you are.

    Would love to email

    Dani
  9. JolieLuLu

    JolieLuLu New Member

  10. IntuneJune

    IntuneJune New Member

    Jolie, checked your profile only to be greeted by such a CUTIE!!!!! He must keep you busy!

    As I was reading this thread, I was a little concerned with your following statement. "DO NOT LISTEN to all of the negative garbage and petty things people rant about. People will bitch about the color of their money after they won the lottery! "

    This board is wonderful because we can openly discuss our problems and experiences freely. There are many ligitimate negative experiences posted about the FFCs There are many positive experiences. All readers should have access to both. Consider this board an informal Better Business Bureau for CFS/FMS where the consumer can start to gather information about future purchases.

    And in the case of the FFCs, this is one major expensive purchase. And is seems, one center may be operating well, another may be having major administrative problems which could affect patient care.

    I would counter your post and say "buyer beware, educate yourself, evaluate ALL information posted."

    We appreciate your input, Jolie.

    Fondly, June

  11. Hootie1

    Hootie1 New Member

    I also go there- let's keep in touch as far as the progress.

    I have been going since March 06. I completed all of my tests (including the infectious panel- which were the most important for me) at the end of April. I started on all of the supplements (slowly!!) to include valtrex. I finally got up to the proper dose the first week in June. Felt sick every time I increased the dose. I am taking 4500 mg of valtrex right now for 2 viral infections and plan to start the antibiotics in late July for mycoplasma and c. Pneumoniae. I also have candida, but will work on that last.
  12. pawprints

    pawprints New Member

    HI:

    I am also in South Florida and go to the FFC. I choose the Ft. Worth one for a variety of reasons. Hopefully, I will be able to stay there. Just found out the doctor is leaving, so I may have to switch to Atlanta.

    I wish I lived closer so I could get the IVs but other than that being out of town has been ok. Glad to know others from my same area who are being treated by the FFC.

    I enjoy reading your posts, but it would be easier without all capitals.

    I also have Lyme disease.

    Pawprints
  13. fmcurepls

    fmcurepls New Member

    I live in Weston and am going to the center at the end of July. What did you think about the center? I know they take a lot of blood. What did you think about Dr. Bullington? How long have you been sick? I have been sick for about 7 years. Good luck and I hope that you start feeling better very soon.

    Sharon
  14. jbgoth

    jbgoth New Member

    Yes, i am on lymenet. I am jbgoth on there too, so, you can send me a private message anytime. I dont think we are allowed to give our e-mails on this board.

    Paw:

    I decided i didnt want to try an IV treatment, BECAUSE, i am out of town. I figured what difference would it make since i couldnt get them all the time.

    Do you get all your prescriptions from your doctor in Texas? I am not sure how to handle that. Also, if you need more blood work, do you just go to Quest labs and get it done there? I forgot to ask my doctor.

    I am supposed to have my phone consult in 4 weeks to go over my blood work, but, i am considering flying back up there so i can get some of my questions answered. I was kinda rushed out of there when my time was up.

    Thanks,

    Jordan

    PS: Someone on lymenet wants to start a support group in South Florida. I am in Aventura. I know 2 other ladies who have lyme disease. I have had lunch with them a couple of times. I dont really have any info yet, but, i thought i would let you know.
    [This Message was Edited on 07/02/2006]
  15. fmcurepls

    fmcurepls New Member

    How long have you been going to the FFC? Are you feeling any better? Do you have to go back and forth? Does your insurance reimburse you for out of network prescriptions that are from a compounding pharmacy?

    Good luck,

    Sharon
  16. pawprints

    pawprints New Member

    Yes, the doctor in Texas takes care of all my prescriptions. If I were able I would go back in person if you feel you were rushed.

    I just go to Quest and give them the lab requisition and have had no problems getting the blood drawn locally.

    The FFC said they would open one in Florida this year but I have my doubts at this point.

    I can't remember your other questions...brain fog. Hope I answered everything.

    Pawprints
  17. fmcurepls

    fmcurepls New Member

    I wanted to know if you were feeling better and how long you have been going? Thank you for the rest of your response. Have a great day.

    Sharon
  18. pawprints

    pawprints New Member

    I have been going awhile, but had some reactions and other stress in my life when I started. So at this point I am not feeling better, but then I have had to go very slowly on the program. I am not a good person to judge by but that does not concern me yet. However, I feel hopeful and like I am in good hands at the moment.

    Best of luck to you.
  19. dutie

    dutie New Member

    at the Philly FFC. I do not even really know that I have fibro anymore. I just added the Corvalen powder to my regimen about 6 weeks ago and it made the last bit of achiness and fatigue melt away. I owe soooooo much to the FFC. I have spent a fortune, but I totally have my life back. It was worth every penny!!!! Best of luck to all of you!
    Dawn
  20. fmcurepls

    fmcurepls New Member

    Did insurance reimburse you for a lot of it? How long did it take you to start feeling better? I live out of the state and am going to the Atlanta center this month. Did you feel a lot worse before you started feeling better? I am sooooo happy for you. Keep feeling great!!

    Sharon
    [This Message was Edited on 07/08/2006]