Can you recommend FFC clinic?

Discussion in 'Fibromyalgia Main Forum' started by ecoughlan, May 24, 2006.

  1. ecoughlan

    ecoughlan New Member

    Hi there,

    I am new to this message board and badly need your advice.
    I am 30, have had worsening CFS for 5 years and live in Ireland.
    I have got nowhere with doctors/consultants here in Ireland, there aren’t any CFS specialists and I haven’t heard of any with successful treatment programs in England/Europe, so I am now thinking of traveling to the US for treatment as a last hope.

    On immunesupport.com and this message board I have read about the FFCs and am thinking of making an appointment. I just wanted to ask your advice as to which doctor and clinic I should go to?
    I had planned on making an appointment with Kent Holtorf in Torrence, LA, as he was the founding doctor and sounded very knowlegable in immunesupport.com interviews...Just wondering has anyone on the board been to him and how they have found him?

    My main symptoms are constant exhaustion, recurrent low-grade fevers, chronic sore throat and swollen glands in neck, brain fog. I have no pain.

    I would be very grateful for your opinion, as I don’t have much information to go on and as my health insurance won’t cover me in the US, it is going to be very expensive.

    Thanks 4 your help,

    ecoughlan
  2. ANNXYZ

    ANNXYZ New Member

    Dr Juglion at the Cleveland Ohio FFC . Holtorf is probably knowledgeable and competent .

    Another infectious disease doc who treats lots of CFIDS patients , and who was also sick at one time with CFIDS , is Dr Martin Lerner in Detroit , MI .

    Dr Patricia Salvato in Houston is an infectious disease
    doc who also treatd CFIDS patients from around the world.

    Whoever you choose , should test you for lyme . The best test for lyme is Igenex . Many CFIDS patients ( not all )
    are finding they actually have lyme. I have lyme and had never considered the possibility of it .

    You are in a pickle for sure . I hope others here will share their opinions as you do not want to waste your money .

    Some of the FFC docs are better than others . Holtorf is probably a good choice .

    Personally , I would probably see Dr Lerner or Dr Salvato , as they are infectious disease doctors . Most of the FFC docs are general practice docs .

    Please keep in mind that these are simply my personal opinions and impressions .

    You could put a post here asking members if they have seen
    Holtorf personally , or Salvato or Lerner . If you keep the post up , I think you will eventually get responses .

    God bless you and lead you to improvement !
  3. ecoughlan

    ecoughlan New Member

    Tks so much for your advice, it is greatly appreciated - I am in a right pickle!!!

    Thanks for alerting me to Dr Juglion in the Cleveland FFC, at a glance there does seem to be a lot of positive reports on him.
    (The only reason I was going with Dr Holtorf is that being the FFCs founder, I thought he might be more knowledgable than the others and he was the only one I'd heard of.)

    I will also think about Dr Lerner and Dr Salvato as you suggested. As far as I'm aware we do not have Infectious disease docs here in Ireland, so I had not considered them.
    The reason I was considering the FFCs is that I know they do thorough testing and thought they could treat all the different aspects to CFS, including Lyme if I tested positive for it.
    (A doctor who diagnosises Lyme by looking at a slide of your blood under a high resolution microscope, told me he saw borrelia like bacteria in my blood, but I am waiting for the results of a test done by an Immunologist to confirm it, as I was dubious of the microscope test..)

    I have to go out now, but I will try your suggestion of asking the members if they have seen any of the above doctors personally.

    Tks so much 4 ur help,
    God bless,

    E
  4. jane32

    jane32 New Member

    I can realate to your symtpoms..I have the chronic low grade fevers too. The only thing I no longer get is the sore throats..I have been going to the FFC for 8 months. I am slightly better but not nearly in remission. If you ahve the money then I would take the trip here but I think they can do a long distance program. Honestly, the best help for me has been from this board and trying different things out on my own. I go to the Philly FFC and have had CFS for 15 months. If you can find a dr. that is willing to perscribe everything is Dr. Teilbaum's book then I think that is personally your best bet. He has an online program and it is very similiar to the FFC.
  5. rockgor

    rockgor Well-Known Member

    for FFC clinic discussions.

    The topic has come up several times. Some people reported good results. I think more people reported no results or only slight improvement.

    Everybody said they were expensive. Minimum of $5,000.

    Good luck and Erin go brah! Me great-great grandfather come from the Old Sod.
  6. borntired

    borntired New Member

    If you are able to fly to Boston, a new FFC center has openend about 25 miles northwest in Waltham MA. There are hotels there.
    http://www.fibroandfatigue.com/center_locations.php

    But before you go through the exhaustion of travelling and the expense of it do a little more research. I think there is a FMS support group in Belfast. I'm sure they have some in the England. Check it out. You might be disappointed if you came here and really didn't get the relief you need.

    Your symptoms sound exactly like CFS. Check the Center for Disease Control for their description of Chronic Fatigue. Print it out and hand it to your doctor. CDC will give you the blood panels your doctor has to take in order to narrow down the CFS. www.cdc.gov/ncidod/diseases/cfs/
    blood test info. http://www.cdc.gov/ncidod/diseases/cfs/about/definition/screening.htm

    Have you had blood test that show you might have EBV or CMV at a higher rate than normal.

    You have brilliant physicians in Ireland, educate them with this website, fibrohugs website and the Fibro and Fatigue website.

    At this point, you can achieve periodic relief but until they figure out what causes this we will have to bear with it.
    When I was diagnosed w/this I was told to take an Antidepressant and meditate. There are still not many doctors here that give much credence to this DD.

    God Bless you and take care.
    Keep us up to date on your situation.

    Borntired
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  7. hopeful4

    hopeful4 New Member

    After 5 yrs. of illness an no improvement, I started at the Cleveland FFC with Dr. Juguilon. I was very impressed with the time and care taken. She was highly recommended.

    The most important thing at the time, was the extensive testing done, and the identification of underlying infections, hormone levels, and immune system dysfunction. The FFC doctors seem to be trained in understanding the nuances and subtleties of these tests, not given by most MDs.

    I started treatment, and did not do well on the hormones, which is something I do hear often. The only one I'm still on is a bio-identical thyroid medication, and that's helping.

    I did well on a particular IV therapy they had, but it has since been discontinued. I tried a different one, which did not help.

    I was given lots of vitamins and supplements. Some helped, some not. I also was able to find comparable substitutes for less cost online, and that is now where I buy them.

    When an FFC opened closer to home, I switched, this was 8 months into treatment. I was far worse at this time than when I began.

    The new Dr. suspected Lyme Disease, and I was re-tested for it, and positive. So then the "real" treatment began. Discovering that I had chronic Lyme Disease explained a lot, including that I had not improved in those 8 months.

    Now I'm almost 6 months into Lyme treatment. When you have a long-standing infection of this nature, it wreaks severe havoc on your body, mind and spirit. Treatment will not be a breeze. Recovery will not be "instant gratification."

    So far, I'm very confident in my current Dr. Not all of the FFC doctors have an equal amount of expertise or skill.

    The FFC main office has a toll-free phone number you can call (not sure if you can from Europe) and discuss all of your questions and concerns before making an appointment. They will also inform you of the costs, and their "out-of-town" package.

    I wish you the best in gathering your info, and making a choice right for you.

    Take care,
    Hopeful4
  8. kalina

    kalina New Member

    I saw Dr Salvato for a while several years ago. I think she is a wonderful doctor, but I had problems regarding time and distance. She was on my insurance plan so her visits required only a small co-pay, but because she was on contract she could see me for just 15 minutes at each follow-up. I don't think CFS can be successfully managed that way.

    Since I had to make a 10-hour round trip to Houston and stay in a hotel room overnight to see her, I was frustrated with the short amount of time she spent with me. I'm not sure what her policy is these days if you go outside of insurance, but I would want to make sure you get more than 15 minutes before you set up an appointment!

    I have seen Dr Holtorf speak at an FFC seminar, but I've never been his patient. Just remember If you do decide to see him make sure you go to Torrance, CA, and not Louisiana. ;-)

    Kalina
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