After Spending Over 10,000 at the FFC...

Discussion in 'Fibromyalgia Main Forum' started by srobins, Apr 5, 2006.

  1. srobins

    srobins New Member

    My bloodwork is still not good! Everything that I was treated for is still way off as far as my levels go! I have been going there for over a year now. The doctor said I have a very complicated and severe case so I'm not sure if they will be able to fix me. Here were my results:

    Cardio CRP - 12.5

    Chlamydia Pneumoniae IGG - Greater than 1.32. Was treated for this as well. Still high.

    Epstein Barr Virus IGG - 5.93 - 4 x higher than normal (same as last time)

    EBV Nuclear Antigen - 5.00 - 4 x higher than normal (same as last time)

    Herpes Virus 6 - 20 - High. I wasn't tested for this the last time. The doc says a titer of 20 or higher indicates recent infection or reactivation with HHV6.

    Reverse T3 - Very low - 31. I've been on thryoid medicine for a year for this and it is still low!

    T-4, Free - 0.4 Low

    TSH, 0.2 Low

    Estradiol - 56. Low

    I feel as though I will never get better.

    [This Message was Edited on 04/05/2006]
  2. shanwill

    shanwill Member

    it's soooo frustrating isn't it. we hope and try all sorts of avenues to get well, and when it doesn't happen you feel so helpless and uncertain what to do next.
    i can relate.
    unfortuantely i don't have any ideas for you on what to do next. but instead support to hang in there. even with this awful dd there is still things we can do.....focus more on those.

    kind thoughts to you,
    shannon
  3. futurehope

    futurehope New Member

    That is an awful lot of $$$$. How long has the FCC been treating you??

    If it has been for a very long time, maybe you should consider taking the long-timeres advice here on how they are feeling so much better.

    There are a few here, you probably know who they are.

    That is my opinion.

    Love and prayers,
    Brenda

  4. hopeful4

    hopeful4 New Member

    I hear your discouragement and frustration about your health condition. Try not to let the words "complicated" and "severe", while serious words, not deter you from your quest for recovery.

    Sometimes it's one step forward, two steps back. That also goes for our attitude, the way we think about our illness. I know, for sure, I've been there, and recently!

    What does your doctor say about your prognosis? I feel that most of the doctors at the FFCs are problem-solvers, who dig deep for answers, and don't write us off. Have you asked if your doctor has consulted with the other FFC docs? I have heard that they have weekly conferences and case consultations with one another. Perhaps this would help.

    In no way do I make light of your feelings and experience. At the same time, I would like to share with you an experience that has changed me. I had breast cancer, it's been 3 years now, and I'm a survivor, one day at a time.

    Much of what I learned through that experience has helped me to deal with CFIDS/FM/Lyme Disease. When I got the B.C. diagnosis, I was numb, scared, freaked out. My life flashed before me, and the uncertainty of my future.

    In order to cope and survive, I dealt with it by educating myself as much as possible, finding support from family and friends, and LETTING GO OF WHAT I COULD NOT CONTROL, WHILE DOING EVERYTHING I POSSIBLY COULD THAT WAS WITHIN MY POWER TO DO.

    Hope I'm not preaching here, don't mean to be.

    Here are some of the things that I incorporated into my life. (Remember, I had CFIDS/FM and undiagnosed chronic lyme disease when I was hit with a breast cancer diagnosis. Also, disabled, unable to work.)

    Daily walks, even if small
    Yoga, qigong (mainly right at home using tapes)
    Visualization, meditation, relaxation (again, using tapes, usually just before bed or daily naps)
    Healthy foods (including vegetable juicing) and proper supplements
    Reading uplifting books
    Avoiding negative people and situations
    Reiki - I learned Reiki and how to treat myself. Became a Reiki level 2 practitioner.
    Listening to uplifting and calming music.
    Praying for self and others.

    Do I get off the path? Yes! Am I every derailed? Oh, yeah! Do I wake up each day and give it another try? Trying to, each and every day.

    Wishing you the very best, and praying that you find the right path meant just for you in your recovery.
    Hopeful4
  5. srobins

    srobins New Member

    Thank you for the information! Yes, I do try to do a lot of the things you mentioned. I have tons and tons of inspirational/motivational books that I read daily - I used to be a Sales Director for Mary Kay so it was my job to be "positive and uplifting" to others.

    I have been ill with CFIDS/FM for a very long time - 16 years, and I do get discouraged sometimes but still believe that someday there will be a cure.
  6. auntyemnga

    auntyemnga New Member

    I don't know if you're ready to look into other options AND I don't know how close you live to NYC but I would like to recommend Dr. Savely Yurkovsky, M.D to you. He is located in Chappaqua, NY. He developed Quantum Field Control Therapy.

    I am including some background on him that was supplied by my doctor.

    FCT® is the result of years of research by Savely Yurkovsky, M.D. He started to develop it because of his frustration with conventional medicine. Modern medicine is able to control the symptoms of most health problems, but not reverse them. Over time, most patients seeing conventional doctors develop more medical problems requiring more and more pills often with side effects. He wanted to find a way to truly heal patients so that over time they would have fewer medical problems and need less or no medications.

    He first tried herbs and vitamins, but the results were inconsistent. He turned to other sciences, including Nobel prize winning physics, toxicology, and alternative medicine to look for better answers. He discovered a large amount of international research linking toxins, especially mercury, to medical problems. He checked his own patients and found that nearly 100% of them were toxic with mercury and other poisons. The more mercury they had, the sicker they were. When he gave treatments to remove mercury, their medical problems gradually disappeared. He found the same results in virtually all medical problems whether it was chronic pain, diabetes, fatigue, arthritis, or fibromyalgia. He concluded that mercury and other toxins were the root cause of most disease.

    He found that vitamins, herbs, and chelation were not powerful enough to remove all of the toxins from the body. Using knowledge from physics and homeopathy, he developed a more powerful method to remove toxins. Homeopathy is a 200-year-old science that uses supplements containing energy signals to communicate with the body. They don’t contain any physical substances at all. Homeopathy is not popular in the U.S., but it is used by hundreds of thousands of doctors around the world. Keep in mind that the homeopathy used in FCT® is far more advanced than that used by other homeopaths.

    He also realized that conventional blood, stool, urine, and hair tests were not accurate enough in detecting mercury and other toxins. He developed a more accurate test using knowledge from physics and Bioresonance Testing (BRT). BRT is a diagnostic technique used by tens of thousands of practitioners in the U.S. over the past 30 years and in other parts of the world for nearly 2000 years. It is based on the idea that the body unconsciously knows what problems it has. BRT enables a practitioner to access that information in the same way that a car mechanic checks the diagnostic computer of a car.

    Many patients around the world, including medical doctors, seek Dr. Yurkovsky’s care as a “last resort” because he is able to help most people who could not be helped by conventional or alternative medical care.

    My doctor sought out Dr. Yurkovsky last summer for treatment and recommends him very highly.

    Do a google search on Savely Yurkovsky, M.D. Click on the 1st result. His phone number is at the bottom of the page.

    If you want to read more about Field Control Therapy you can go to drdaveou dot com.

    Just a suggestion,
    Auntyem

    PS: You can do a search on here for Field Control Therapy and read about what I've been doing.
  7. NyroFan

    NyroFan New Member

    srobins:
    You certainly have tried to get things 'fixed'. Sometimes it seems we are throwing good money after bad, but I do believe in trying everything within reason.

    I do not know what all of your blood work means, but evidently it is 'off'.

    I hope you get to the bottom of it all and you level out your labs. Do not let it get you down.

    n.f.
  8. heathnicole

    heathnicole New Member

    Srobins-
    I am so sorry to hear that you aren't doing well. Where are you located at? Which FFC are you going to. I hear some are better than others. I am 23 and have been sick since I was 18 and I a desperately tryingt o find a good dco. I want to go to a clinic like that but I am scared of something like that happening to me too :)
    Any info you could give would be great
    Your in my thoughts for peace, love , joy and a recovery.
    HEather
  9. srobins

    srobins New Member

    Thank you for your kind words, and everyone else, too! I truly believe that the FFC where I am going is very good and they are doing and trying everything they can to get me well. So I don't blame them - I know from what doctors have told me that my case is very complex and a lot of what my problems are my own fault. I did a lot of things to myself such as starving myself, working extremely long hours and not taking days off, I could go on and on.

    I am very grateful for the FFC and still recommend them because in the entire 16 years that I have been sick, they are the only ones who have truly researched and have been doing everything they can to help me. I just think it is my body, not them. It is discouraging though because I want to be well so bad. I go to the FFC in Philadelphia. There are many, many people who are doing well and having great success with the FFC that I go to. I talk to them everytime I'm there.
    [This Message was Edited on 04/05/2006]
  10. spiritsky

    spiritsky Member

    Just so you know, Your reverse T3 is supposed to be low. Didn't they check your "Free T3" , that's the one that should be higher after taking Thyroid hormones...
  11. srobins

    srobins New Member

    Yes, the reverse T3 is to be lower, but the range is 90 - 350. Mine is 31.
  12. laf5307

    laf5307 New Member

    Hi there, I feel your economic pain as well as your physical pain! Been treating FM for 10 years, last 12 mo. with FFC in Cleveland and I am worse than when I started. My C. pnuemonae titer after 10 mo. of treatment is still 1:2400! I am very frustrated as well as poor!! I have been advised to seek out a infectious disease specialist by a medical doctor, have you ever tried one? I don't know if there is anything they can do for chronic infections like ours but I think I am going to try. Good luck, one day at a time, I will pray for you!
  13. Jasmine

    Jasmine New Member

    Srobins,
    I'm sorry to hear that FFC has not helped you much. Right now I'm doing reverse therapy and I have noticed minor improvements in my CFS/FM of 22 years. I'm hoping to improve through reverse therapy.

    Love, Jasmine
  14. sop28

    sop28 New Member

    I was also seen by ffc and was just looking at the labs. Antibodies will show up for EBV IgG if you have ever been in contact with the virus, it doesn't meen that you currently have it. Some of the testing that they do makes it look like you have something that you actually don't. Personally I am fed up with doctors. They all think that they know everything, or at least act like they do.

    Sorry for the negativity,
    T
  15. acesk

    acesk New Member

    FCC didn't help me at all even after a year. Doctor told me they help about 40% of their patients. It was an expensive and discouraging year.

    Sue in Florida
  16. bioman85

    bioman85 New Member

    But remember that you didn't follow all of their instructions on which medicines to take? You can hardly expect to get better if you don't follow their advice.
  17. heathnicole

    heathnicole New Member

    Ahh So much conflicting advice . .I am looking for the BEST hollistic clinic/Doc

    IF THE FCC isn't so great does anyone have any ideas?
    At this point I will go anywhere.
    I am 23 and pratically bedridden.
    I have CFS, FIBRO, and hashimotos( thyroid )
    Thanks in advance for any help
    blessings for everyone
    heather
  18. morningsonshine

    morningsonshine New Member

    Have they checked you for lymes?
    That could be keeping you from improving.
    And what about treating the fibins in blood,
    to thin blood, the herapin shots?

    I don't know if i got all that right.

    Keep looking, Stormyskye, has a post on alot of stuff
    we can do our self.

    Look up some of her post.

    Their just dosen't seem to be a cure all for everyone,
    i know some have had excellant results with the FFC.
  19. heathnicole

    heathnicole New Member

    I was tested but not through was is suppose to be accuate.
    I have the name of a good company but it is suppose to be like $400. All I have had done for lyme is the standard western blot.
    I am going to keep searching.
    I am goign to try to find out more specifically about the Atlanta one- because that would be the one i am considering going to.
    Thanks so much:)
  20. essie444

    essie444 New Member

    What is the FFc and where is it in Philly? Thanks