my FFC Pittsburgh visit

Discussion in 'Fibromyalgia Main Forum' started by pinkstar, Sep 19, 2005.

  1. pinkstar

    pinkstar New Member

    well.. it was interesting to say the least.. i had 40 something vials drawn.. it wasn't as bad as i thought it would be.. the doctor and staff were very nice + helpful.. they explained things to me without talking downt o me, just talking TO me.. they explained that i have hypothoiroidism + quite possibly am overloaded with yeast.. which is the same as mold + it is probably coming from my school, since i got so sick only after coming here.. things have always been not quite right, but with my family history i am hypersensitive to like everything.. so they started me on mystantin for the yeast + lunesta for sleep.. though i am waiting til this weekend to try it so i dont mess up my finals.. i have 7 bottles of herbal supplements to help my body reset itself.. all in all, 25 pills a day + a burn cream cause touching the inside of a hot oven is BAD lol!
    the IV hurt me like crazy.. my poor mom n stepdad came from NJ [a 7 hour trip] to be with me + the IV was taking forever cause it hurt, so i had them crank it up and i just dealt with the pain so it would be over quicker for me and for them.. but today i feel so much more.. alive like.. like i see clearer.. less BLECH like usual.. lots of different feelings.. i didn't sleep THAT well, but i only took the valerian supplement... so yea.. we shall see.. i have hope though...

    it was a bit pricey.. total came to $763! but i financed it + my insurance might reimburse me for some of it.. but i cannot put a price on being healthy at my age [20].. if i get better i have the rest of my life to pay it all off.. one day at a time though!

    for the first time in a LONG time, i woke up to go to school on time.. and i don't feel as bogged down... so i am pleased with the outcome.. my mom is even going to make an appt witht he FFC in scranton, CT!!! so we are all thrilled.. maybe not out wallets, but like i said.. priceless. i will update periodically how things are going and what i get back from my 2nd appmt... so look for it on october 6th! :]
  2. Rosiebud

    Rosiebud New Member

    positive outcome for you pinkstar.

    I wish they had FFC clinics in UK.

    Good luck with your regime.

    Rosie
  3. rileyearl

    rileyearl New Member

    I'm so glad you feel a little better! Just in time for finals. The burn cream cracked me up! I'm really glad the doctors they use are so approachable. The MD I've seen was in family practice before, so knows all kinds of things besides her intensive training for this gig.

    I'm just a couple of weeks ahead of you in FFC treatment in Seattle. I go back tomorrow for my second visit. Am really looking forward to seeing the blood results. I only had 37 vials drawn. The stuff she gave me for sleep was all herbal and called Rest and Restore. You can take up to 8 of the capsules, but I gave up at 6. The taste was so bad to me that I woke up from it! So, sleep is about the same 2 hours at a time no matter what I take. My energy from the vitamins and cytomel (t3 thyroid) is much better than before. The pain is about the same or maybe just a tiny bit better. Some days I only have to take 1 vicodin.

    Thanks so much for the update! BTW I posted your Spoons story so more people could read it. It was a big seller. I hope you don't mind that I posted it. I said it was from your post. Take care and good luck with finals!

    Francie
  4. ckahele

    ckahele New Member

    i go back for my 4th appt tomorrow.
    can't wait to hear what's the word.

    i gave up working on my thyroid issues cause i couldn't afford the meds. but now since he took me off the famvir i'll try it again.

    it would be great if it worked and i could take some of this weight off.
    cyndy

  5. pumpkinpatch

    pumpkinpatch New Member

    I'm still on the 37.5 mcg. T3. Too chicken to go up to my 50 mcg. in fear of a reaction.

    I was on the antibiotics herx from h... and had to cut back

    Don't want to totally overload my body and have to use my own intuition here. Slow but sure in my case.

    Cindy
  6. pinkstar

    pinkstar New Member

    yea it was from some site... not my words.. don't want to take credit where it is not due.. not sure who DID write it though... must have been a VERY intelligent woman... :]
  7. pinkstar

    pinkstar New Member

    i had FOUR warm bags on my arm... 3 on my arm, 1 on my hand.. and i still was in a lot of pain! i told them to just crank it up n i could take it so i could get out of there faster.. but oh man.. i woke up ON TIME today.. and its hours later + im not dead tired! i'm tired, but regular tired.. like i CAN stay awake [to catch up on my finals that are like due tomorrow lol].. hoorah for energy!!!!
  8. pinkstar

    pinkstar New Member

    he is waiting until the blood tests come back on the 6th of october before treating me for thyroid issues... i am however on the mystantin because yeast is a definite... so we shall see..
    -Lauryn
  9. dakotasweett

    dakotasweett New Member

    I have an appointment at the Pittsburgh FFC in mid October and was starting to wonder if it will be worth all the money I will have to spend (I'm still in school too). I am so glad you had a good experience and hope I will too.

    Thanks again,
    Vanessa
  10. hidlyn

    hidlyn New Member

    What is an FFC clinic (I'm originally from the Pittsburgh area but now live in Maryland) and what was in the IV. Was the needle painful or the IV medication?

    I really hope that you found help. If you have I might try it out too.

    Thanks for sharing.

    Heidi
  11. pumpkinpatch

    pumpkinpatch New Member

    My first set of labs showed
    low progesterone
    low estrogen
    low DHEA
    low pregnenolone
    low T3
    high Reverse T3
    IND lymes (apparently slightly positive)

    Good Readings
    B12
    Growth Hormone
    Liver Function

    My next blood tests were for Thyroid (rechecking), candida, EBV, chlamydia and other ones. Will receive those results this week.

    This just gives you an idea of what they are looking for.
    They are very thorough searching for all your trouble areas and treating according to what they find.


    Cindy
  12. pinkstar

    pinkstar New Member

    the IV itself hurt... the needle wasn't so bad.. but i am hypersensitive to anything entering me through IVs, and this was very painful...

    fibroandfatigue.com FFC = fibro and fatigue center.. :]