feedback on FFC - Philadelphia

Discussion in 'Fibromyalgia Main Forum' started by Jessa34, Sep 22, 2005.

  1. Jessa34

    Jessa34 New Member

    Hi-
    If anyone is going there and has had a positive experience there can you let me know? I've been thinking of seeing if I can go there since it's the closest and just wonder what the doctors/staff are like, how you are treated, I guess any information would be helpful.
    Thanks a lot.

    Jess
  2. Frecker777

    Frecker777 New Member

    Hi Jess,
    I am currently seeing the doctors at the FFC in King of Prussia (right outside Philly). Both staff and doctor are great. I haven’t had much improvement yet, but I am so ultra sensitive—I can’t even tolerate tiny pieces of compound pharmacy grade thyroid meds. I have jumped around in terms of treatment—tried valtrex and now diflucan—will certainly keep trying till something works.
    -Carrie
  3. crillee

    crillee New Member

    Thanks Carrie! Do you think you could keep us posted on your experiences? I just moved from Philly to Lancaster and am interested in going there also!
    Oh and do you have fibro or CFS?


    Thanks!!
  4. Frecker777

    Frecker777 New Member

    Hi again,
    I have CFS, not fibro. I will certainly keep yall abreast (just like using that word) of my experiences.

    After my first visit where I had 35 vials (yes 35!!) of blood drawn, the second appt focused on deciphering results and planning treatment. I showed up high in antibodies for EBV and Candida, and marginally low in various hormones. To be honest though, none of my hormone levels were actually “out of range”, just on the low side. So after some initial setbacks, the doc and I decided to try for the big guns first in hopes of calming down my immune system so I can tolerate more drugs, supplements, foods, etc. I just started Diflucan about 3 days ago and am getting re-tested for lyme next week. I had previously had a positive IgM western blot, but no treatment. Anyway, what I like best about the center is their understanding—when I go in and say I could only take a quarter of some pill and I still felt like shi*--they get it.

    Anyway, would love to hear others experiences from this particular center.
    -Carrie
  5. Aberlaine

    Aberlaine Member

    I was the one who asked about the Philly FFC in another post. I'll be visiting a friend there and was wondering if it would be worth it if I got an appointment.

    It sounds like you have to go back for several appointments, which I couldn't do since I live in Upstate New York. Sounds like they do a wonderful job of testing and diagnosing. I'm pretty sure I have CFIDS, but haven't bothered to have it diagnosed. There are no doctors in my area that are knowledgeable about CFIDS (or even believe it exists).

    So I guess I'll just keep on keepin' on. Luckily, I'm retired and don't have any high demands or stress in my life.
  6. MKlady

    MKlady New Member

    The FFC has a long-distance program that several people are taking advantage of. I believe it's one or two in-office visits and then the rest by phone. It's an option for anyone who lives more than two or three hours away by car. Ask them!
  7. bren45

    bren45 New Member

    Hi Jess,
    My husband and I both go there(I have Fibro,Hubby CF)
    It has been a very positive experience for us. The staff is excellent. My fatigue is almost gone. I think the fatigue that I do have is from being so out of shape from inactivity for so long. Still have some muscle pain, but no where near what it was. It has taken me about 5 months to get to this point. My hubby has been going for 2 months and does feel some improvement. It takes time to get better. No quick fixes with these DD's. So, yes I recommend the FFC.
    Take care, Brenda
  8. butterfly83

    butterfly83 New Member

    Bumping for more info! I live in MD but i've been curious about this center. I could make the drive if it would be worthwhile.
  9. sickasadog

    sickasadog New Member

    My friend went to the FFC in King of Prussia. She was very happy overall, but she had to push for a lyme test and it came out positive. They are wonderful with CFS/FM but not too much experience with lyme, in her opinion. She is now going to a LLMD (lyme literate md), who confirmed the Lyme and said it is at the root of her CFS. So, overall excellent place, excellent staff, etc etc, but she was not happy with the way the lyme was handled- they did not make a big deal about it and don't have too much experience treating it.

    SD
  10. kimj1215

    kimj1215 New Member

    My husband has been going to the FFC in King of Prussia since it opened in February. His progress has been very slow. I attend every appointment with him and can say that Dr. Nurse-Bey and the other staff members are truly wonderful. My husband is a difficult patient to begin with and the pain from the FM makes him even more difficult. They have been nothing but kind and supportive over the last 7 months. The only issue I have with them is pain management. They truly don't want to prescribe enough medicine to keep him comfortable. But then again, that's their philosophy, treat the underlying conditions so that they don't have to treat the pain. Good luck if you go. There are many on this board who have made significant progress at these centers.

    Kim