NC2004...how did your appt at the Detroit FFC go?

Discussion in 'Fibromyalgia Main Forum' started by toronto133, Nov 17, 2005.

  1. toronto133

    toronto133 New Member

    Hello,

    How did your return appointment go at the Detroit FFC go?
    I hope you are now working with a treatment plan.

    I have been trying to reach them.

    Regards,

    Denise
  2. nc2004

    nc2004 New Member

    Sorry it took me so long to respond, but our high-speed cable has been down for a couple of days.

    My blood results came in. I gues I am one of the lucky ones--I don't have the real tough ones.

    I have Cytomegalovirus, EBV and a staph infection, hypercoagulation, as well as all my hormones screwed up. Here is what I will be taking:

    T3/T4
    Estradiol/Estiol
    Testosterone
    Cortisol
    DHEA
    Pregnenolone
    Progesterone

    Minocycline
    Valtrex

    Cardio-B
    Gamma Grow
    Vascuzyme

    Energy Extract
    Fibro Freedom
    Foundation Pak
    Rest and Restore

    All and all, it could have been alot worse. We'll see what happens in a few months!

    Pam
  3. toronto133

    toronto133 New Member

    Well, as you said I guess it could have been worse. You must have worried going into your appointment.

    A couple of more questions for you if you don't mind.....

    Are you taking anything specifically for the hypercoagulation? and do you have some reservations taking the hormones, or are some of them for a short duration only? Did you feel comfortable generally with your treatment plan? Sorry to be a pest with all the questions. I realize that many others have posted their experiences here, but I am trying to get a feel for the Detroit FFC.

    Thanks Pam and I hope you do well with your treatments.

    Denise

  4. nc2004

    nc2004 New Member

    Don't worry about the questions--ask any you want. I sure have used others' experiences on the boards to guide me.

    For hypercoagulation they gave me the supplement, Vascuzyme. The doctor said that it usually does the trick and that he hasn't had anyone have to go to Heparin injections.

    On the hormones, they are bio-identical, so from what I have read they are fairly safe. The doctor at the Detroit FFC is a (retired?) ob/gyn, so we discussed his opinion of the sex hormones, especially estradial/estriol. He feels they are perfectly safe and that they have protective properties for uterine and breast cancer, unlike the synthetic hormones (that I took during menopause!). I guess if I knowingly took the synthetics before that have known bad side effects, I might as well try these!

    I feel reasonably comfortable with my treatment plan. I realize that they take an agressive approach and one that may not be seen as "mainstream" medicine, but "mainstream" medicine doesn't have any solutions. It was a difficult decision to go this way, but my husband (who has his PhD in chemistry and is a big skeptic about drugs) and I are ok with the plan so far. You do have to be comfortable with lots of supplements and drugs. I will be taking 44 pills and 2 creams per day.

    In regards to Doctor Sidhwa--I didn't feel any "warm and fuzzy" with him. The second appointment I was more impressed with him, but he is not top on my list of beside manner stars. Besides, the treatment plans and testing I think are standard protocol for all the FFC's. The nurse Kim is fantastic.

    Hope this helps. If you have any more questions, please ask. Wishing you the best with your treatment path.

    Pam

  5. toronto133

    toronto133 New Member

    Thank you Pam for sharing your experience. Because the FFC's are operating out of the mainstream ...it impresses me and I sense that a few years down the road this may be generally accepted treatment for FMS. I couldn't even begin to explain to my GP here what the treatment methodology is at the FFC!

    I am trying to make myself as well informed as possible so I know what risks I am taking during treatment. The vascuzyme for hypercoagulation sounds interesting.

    Thank you again for your thoughts and I hope you have good success with your treatment. Please keep me posted on your progress.

    I have an appt scheduled in Atlanta but may change to Detroit since the flight schedules mean that I have to stay 2 nights there (and I have a 4 and 7 year old).

    Regards,

    Denise




  6. nc2004

    nc2004 New Member

    I wish you the best. I will be sure to let you know how things go for me. Pam
  7. toronto133

    toronto133 New Member

    I made an appointment at the Detroit FFC for next Monday. The patient coordinator Dorothy was really helpful suggesting that many of tests can be done in Canada and the results faxed back to them.

    Thanks again for your help and I hope you have started off well on your treatment.

    Regards,

    Denise
  8. pumpkinpatch

    pumpkinpatch New Member

    Look luck at your Detroit appointment. Are you able to drive to the clinic?

    Hopefully your doctor can order some of the bloodwork, it will save you some money.

    Wish they had these clinics in Canada.

    Cindy
  9. toronto133

    toronto133 New Member

    Yes, I will drive since I think that will be easier/faster than the plane and renting a car in Detroit.

    I am also glad that you are starting to see improvement with your treatment. Where do you have to go for follow-up testing?

    Take care,

    Denise

  10. shanwill

    shanwill Member

    Hi there,
    I too am a fellow suffer (CFS for me - 3 yrs) and I live just outside Windsor, ON. I was just starting to look into the Detroit FFC and a Doctor in Toronto called Alison Bested. Have you heard/seen her? She specializes in CFS/FM.

    I was tempted to go through her first - she's canadian - money etc etc. But then I wondered if this American one is better and worth the money?

    I am just soooooooooo sick and tired of being sick and tired! So am desperate to just sort this out.

    Can you tell me of your experiences pls.

    Thanks and hoping your improving.
    Shannon
  11. deliarose

    deliarose New Member

    Can I ask what dose of Vacuzyme you are taking?
    Thanks
    Delia
  12. toronto133

    toronto133 New Member

    My experience with the Detroit doctor was not so great but I had a letter from the center saying that he is now gone. I have not seen his replacement, the letter says she is a D.O.

    I do not know Dr. Bested but I believe there may be others on the board who have gone to her. The FFC route is fairly expensive - especially the lab work. I would be prepared for about 5,000 US.

    Wish that I could be of more help. There are some people who have gotten good care in Canada but I wasn't able to work the system successfully myself!

    You may want to do some research on Lyme Disease and if your symptoms match, get a Western Blot test. I am now going to an infectious disease specialist who treats Lyme.

    Take care.

    Denise
  13. shanwill

    shanwill Member

    Let me know how it goes.
    I'm going to try for Canada first and see how I go. Fingers crossed.....
    Good luck,
    Shannon