About to give up FFC

Discussion in 'Fibromyalgia Main Forum' started by namow, Oct 2, 2006.

  1. namow

    namow New Member

    I am really frustrated with FFC, doctors come and go and on top of all when I go seems like the doctor doesn't even know what I'm taking or how long I have been in treatment, that really bothers me. So much money and they don't even take the time to read your chart in advance and know who is in the room.
    Also, I'm feeling a lot worse, it has been almost 5 months and now I have pain in places I never did before this treatment.
    This is not mentioning the amount of $$$$$$$ that I'm spending, it really is way to expensive!!!
    I have been patient because of the famous "get worse before getting better" but this is ridiculous.
    CAN YOU TELL I"M ABOUT TO SCREAAAAAAAAAM????
  2. Mikie

    Mikie Moderator

    I really had high hopes for these clinics in the beginning. Thank you for posting even thought I can tell how horribly frustrated this is for you. We need feedback, positive and negative, before deciding to invest so much money into treatments.

    I hope and pray you get to feeling better.

    Love, Mikie
  3. namow

    namow New Member

    for your reply, it is nice to know that people do care here.
    It is a huge investment to go to FFC and I don't think they give you the attention that you deserve.
  4. rockgor

    rockgor Well-Known Member

    on this board 14 months. Most of the posts I've seen about FFCs have reported negative experiences.

    I used to wonder why Kaiser bothered to keep records. I almost never saw a doctor more than twice and it was obvious none of them had looked at the file before they saw you. FCC sounds the same.
  5. mollystwin

    mollystwin New Member

    I'm sorry you are having a bad experience! I have also spent a lot of money at FFC and sometimes I get frustrated!

    My doctor is great though. She and the rest of the staff remember everybody's name on site, even our spouses names! She also comes into the IV room to chat with us even on days when we don't have appointments with her.

    I guess everyone's experience at FFC is different. I'm hanging in at least until the end of the year. Then we will see. I have infections I need to get rid of and then hopefully I will be better.
  6. Empower

    Empower New Member

    I know. I cancelled my first appt with them

    Didn't trust them and Lord knows we don't have money to throw away
  7. namow

    namow New Member

    All of you are great! thank you so much!
    I am having a very hard day!
  8. rinaldo

    rinaldo New Member

    Hi, i have been going to the ffc in pgh since feb06. Ive been on a compounding med for the tyroid.
    Now my family doctor did blood work and was very upset with the results . He told me not to take it for 8 wks and then go in an get thyroid and live tests........Dont know what ti do

  9. kellyann

    kellyann New Member

    I have spent a fortune there, taken a ton of supplements, antivirals, antibiotics,etc...And I feel a whole lot worse than I did last year before I started going there. I am on the verge of liver faiure from all the drugs. My lymph system went haywire. My lymph nodes under my arms swelled to the size of tennis balls. I kid you not!

    I don't know what to do. I think they gave me way to much meds at one time. I think it could have been a near leathal dose. I felt so horrible. I am now giving my body a break, not taking anything but pain meds and hormones. I am on compounded thyroid medicine and compounded medicine called cortisol for adrenal gland disfunction.

    I am not taking all those supplements either. I can't believe that it is healthy to take all that stuff. I tend to think all that could be toxic to ones system if it isn't supposed to be there. It always makes me feel real sick to my stomach when I do take it. Who wants to take handfulls of huge pills that they have no idea what it is? Not me.

    I don't know what to do as I have Lyme disease. There are not many doctors who know how to treat it corectly. I am starting to wonder about the FFC.

    Take Care!
    Kellyann
  10. namow

    namow New Member

    Are we being guinea pigs at FFC or just a money making machine?
  11. kbak

    kbak Member

    I can't say I have a lot of good to say abour FFC except that they did do extensive bloodwork that did Dx what I had.

    I would have never gotten that kind of bloodwork done anywhere else. For that alone I'm glad I went. After that I did my own research on my illnesses and have been heading up my own treatment.

    FCC's protocol is a kind of let's try this and then try that kind of treatment. What they do works for some but I don't think it's works for the majority.

    Everyone has different viruses and usually multiple viruses which are very difficult to treat for FFC or anyone else.

    I think people get so frustrated because they say the majority of people get much better in about a yr. That may be true for those who don't have a multiple virus problem, but not true for those who are fighting a complex illness.

    I think we have to be realistic. There is no magic pill. WE have to take charge of our illness with a doctor's help. For me diet has played a huge role in how I feel. Exercising in the pool has been a big help.

    Wearing ear plus at night has increased my quality of sleep tremendously. I only started doing that. I hate the feel of ear plugs so I just never did it. I finally decided followed the advice of another sufferer and use ear plugs and black out my bedroom windows.

    I would have never thought in a million yrs. this would have made such a profound difference! I still hate the ear plugs but I'm getting so much more sleep. Whoda thought.

    I want to treat this illness with as few drugs as possible. Multiple drugs I feel for me, cause multiple problem's. I want to treat this as natural as possible. The supplements as a whole do add up buck wise. But I don't think there is any cheap way to treat this.

    I think the biggest key to doing better is sleeping better. No easy thing! That's why I'm so amazed that stupid old ear plugs have done the trick for me.

    This is a life long challenge. The information I have gotten here has made all the difference on how I'm doing today, and it's free! It just taking a lot of time reading and researching.

    I wish better days for everyone!

    kbak

  12. NyroFan

    NyroFan New Member

    namow:

    I have been on the board quite some time now and from what I have read about the FFCs leads me to believe i would not even try it.

    I suppose i am better off with the rheumatologist.

    nyrofan
  13. florenceb

    florenceb New Member

    You probably already know that the FFC in Cleveland closed. It did not last very long. I give it a big thumbs down.

    I don't have CFIDS or FM.... But I have complained of unrelenting fatigue for years to many drs.

    It took a dozen or so drs but I was finally diagnosed with Hashimoto's Autoimmune Disease. I noticed that your bio listed that you have that also.

    If u take synthetic meds like synthroid or levoxyl for Hashi's...I suggest u look into Armour thyroid.

    Stop the thyroid madness is an excellent source of info..I joined a natural thyroid group on yahoo and it probably saved my life; only now I am still fatigued- bedridden...maybe from taxing my adrenals for yrs cuz no dr tested my thyroid antibodies.

    Gotta stop now; no strength.. You can read my post history to learn more...Hope to get back to u soon. Florence
  14. cmc123

    cmc123 New Member

    namow, I am sorry for your bad experience at the FFC. It is beginning to sound like a lot of us are having the same kind of things happen and it doesn't matter which center we go to.

    I was really frustrated with the dr. I saw & talked with. I only had 3 appt. and I purchased the out of town package. I won't even be using my last appt. that I've already pd for!

    Like several here have mentioned I don't feel he looked my file over enough or got to know me. He couldn't remember anything about me or get anything right when talking to me with the file sitting right in front of him. Within one phone conversation I would have to keep reminding him "no, I don't think I'm supposed to mix these 2 drugs" or "I'm already on that med and it's not helping" or "I can't take that one, remember it's on the list of things I'm allergic to!" It just went on & on, until I was seriously afraid he might do some harm to me if he put me on some weird one & I'd have an allergic reaction.

    We stressed to him that I have lots of allergies & have ended up hospitalized & close to being trached before because of an herb and he said he would go slow. Yet, each time I ended up with 8-10 new supplements. When I started having symptoms he would say they couldn't possibly be causing them. On one of our phone consults he went over what scripts he wanted me to start & would send. Instead I got a $96 bottle of something along with the other $500 worth of supplements, because he changed his mind after we got off the phone. He wouldn't remember from one consult to the next what he had put me on.

    It bothers me with the insurance asspect of it too. I feel like they are taking advantage of us. They know we are desparate for help & understanding and will do almost anything to get it. I had my eyes opened when I read their job descriptions and what some of their goals for the office were to be!

    We all know our bodies, we having fibro are usually sensitive to things. It's just not right to have all kinds of stuff thrown at us to do to our bodies all at once. It's going to shake our world!!

    Someone else mentioned about their liver enzymes being way out of wack. I hadn't even connected the dots on that one. Mine were last time too, and that was when I had been taking all that stuff for about 6 weeks. Will be interesting to see what they are the end of the month.....hmmmm.....
    sorry this has turned into a novel....guess I needed to get some of this off my chest. People at church & friends have been asking me about it & didn't it help & when do I go back etc. and I just feel dooped and don't know what to say. All I know is the whole experience has made me feel like giving up on trying anything else ever!

    Just one more thing...maybe I should have ran when this happened, but I was too excited to just be there :( We had the appt. drove 8 hours (one way) and had to spend 2 nights away from home for me to be able to manage that kind of trip down & back.....only to wait 3 hours to see him and then my appt was rushed and cut short because he had to go to a closing on a piece of property that morning. Yah, I should have ran then.
    Connie

    [This Message was Edited on 10/03/2006]
    [This Message was Edited on 10/03/2006]
  15. forfink

    forfink New Member

    Have been watching this thread over the week to see what people have been saying.

    I can relate to your frustration and I can offer a suggestion, you can make up your own mind if you feel this is for you.

    I have been going to Dr. Joeseph Bolin in Plano (75 & Park) he is an internist and DO, for about 3 years. He is in his early 30's is well versed on many medications that we all take and he just keeps trying with me until we find the right combination. He has about 50 FM patients. I seem to be over-reactive to many meds, so I'm not a quick fix person.

    I get Magnesium , gamaglobin, kutapression, and B12 shots which help a little. I like that he is compassionate and will take the time with you. Most of us just need a doctor that we feel listens and does't think we are nuts!

    All patients react differently to EVERY medication, that's what makes feeling better so hard to obtain. He and I were just talking about this concept today.
    Hope you find a doctor.... Best to You!
    [This Message was Edited on 10/06/2006]
  16. namow

    namow New Member

    I really appreciate all of your answers, it is amazing how many of us are having the same experience!

    I am getting extremely sick taking all the stuff they have me on and having pain where I never had it before...that doesn't sound good does it?

    Also I wonder about a place that is advertising on radio and lately I have seen it advertised on a newspaper as a place for people with hormonal imbalances and other things, not just a fibromyalgia place, this is weird to me, does that mean they are getting desperate for whomever they can get and are looking for help like us?

    I'm sorry if I sound bitter but I am in complete frustration with this place.
    [This Message was Edited on 10/06/2006]
  17. PVLady

    PVLady New Member

    You always need to follow your instinct. I tried the FFC here in Torrance and I can't comply with the supplements. I have chronic gastritis and cannot tolerate much.

    I tried one supplement and was very nauseated for 5 hours. It is not working for me.

    Yes, I spent alot of money but I knew what I was getting into. I am just so desperate sometimes and looking for miracles.

    I am happy with the bio identical hormones they gave me. The progesterone is especially helping.

    I am still going to see another infectious disease specialist in January close to my home. I will never give up looking for the miracle but for now, I can't do the regime at FFC.

    Don't feel bad if it does not work for you. You never know before you try it.
    [This Message was Edited on 10/06/2006]
  18. deb20003

    deb20003 New Member

    I have a dumb question, (I'm really new), but what is FFC?

    Deb
  19. yesnettv

    yesnettv New Member

    Overall my experience has been good. But I went in there very educated, and I saw the NP rather than an MD to save bucks.

    I was pretty close to crawling under the bed and staying there when I went in Dec. 2005. Within 3-4 months I was 50-60% better with supplements and bioidentical hormones. Initially, my internist doubted much of what they recommended for me, but "we" decided to give it a try since it would not kill me.

    We got the blood tests back and the FFC was shocked that every single hormone was critically (almost dead) low. I was flabbergasted at the look 9on my internist's face when he reviewed my labs, and then he asked if I had been able to drive to the appointment. Yes! of most concern were my natural killer cells which hardly existed.

    Fast forward then to now: I still have pain, but some of that is orthopedic. I have enough energy that I could work an 8 hour day with a few breaks. I can think and remember. What is most important to me is that my normal 4 docs are now up to speed on the rationaole behind the treatment and have read and now approve of it.

    Soon I am transitioning back to my internist since he feels capable of maintaining me.

    A word about docs and insurance: The great ones don't take it any more. They let you submit the bill for reimbursement like olden times. If they agree to take your insurance, they must agree with the carrier to treat you how the carrier wants rather than how he would prefer to treat you.

    So, you are being treated by an insurance clerk rather than an MD. None of my docs (including orthopedic surgeon) accept insurance for anything but surgery and hospital care and they leave it up to you and your family to fight your carrier. They want to do the best for you.

    Medicine has changed!
    Fayski
  20. mollystwin

    mollystwin New Member

    It sounds like you are one of the lucky ones who responded well to FFC treatment. Thanks for posting your experience.

    It's true that many good drs do not take insurance. They are tired of fighting with them to get payment and don't like to be told how to treat their patients.