CFS patient in Ireland needs ur help

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?
    I am looking for a doctor who will do detailed testing and will be fairly accommodating, as I will probably only travel out for one or two office visits and then try and do follow-up appointments from home by phone.
    Some members have referred to the FFCs approach as being ‘very aggressive’, can I ask what you mean by this?

    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. shanwill

    shanwill Member

    hi there,
    i've read other posts who have found help in england - not sure where though sorry.

    going to the US will be VERY expensive! and no guarentee. a good book to get which runs the same type of program as the FFC is 'from fatigued to fantastic' by jacob teiltabaum...(not sure of spelling)

    i live in canada and after seeing all the posts of the good and bad and the indifferent on the FFC i'm not sure it's worth all the money. you're looking at about $6000 US plus your flights.

    if i was you i'd do some searches on england - maybe put a post asking for where docs are they're that are specialists with CFS.

    good luck,
    shan
  3. auntyemnga

    auntyemnga New Member

    If you are open to alternative therapies, there is a doctor in Galway, Ireland. His name is Simon Rees. He uses FCT, Homeopathy, Naturopathy, Tui Na Traditional Chinese Medicine, Tibetan Pulsing Acupressure. His website is gentlehealer dot co dot uk/helpyourselftohealth/.

    I am currently seeing a doctor in Georgia, USA that uses FCT. He is having wonderful success with most of his patients. It just depends on how toxic a person is. Unfortunately, I'm at the top of that list : )

    If you would like to see what FCT is about you can go to drdaveou dot com and click on Field Control Therapy. You can also look up my posts on this board about Field Control Therapy at the top of this page. I'll also bump it up to the top of the list.

    My doctor and Simon are moderators for their forum group. My doctor went to Ireland in March for a conference.

    Good luck,
    Auntyem[This Message was Edited on 05/24/2006]
  4. zerped

    zerped New Member

    Welcome!(any relation to Mary Coughlin, the singer?)

    A resource I found very helpful that would be available to you in any large city in the U.K. has been accupuncture, Chinese herbs, chiropractic, etc. None of them created thetreatment plan I'm on now, but ALL of them knew of other things to try. the recommendations I've received on diet, stress, herbs and "pacing" strategies have been a REALLY big help.

    And by joining our merry band, you're now hooked up with possibly the best asset you have. I have received information on legal matters, treatment and general health that I never would have gotten from the "qualified" medical professionals. Very few of us are doctors, so be aware, etc. etc., but no matter what you need to know, SOME of us have been there before. Again, we are glad to have you in our weird little family!
  5. ecoughlan

    ecoughlan New Member

    O gosh, you are probably right, but at the moment I'm telling myself that if I can just get myself to a good doctor in the US, I will be sorted!!
  6. auntyemnga

    auntyemnga New Member

    I understand that you want to go to the best and that is why you're looking at the FFC. I wanted to go to the best also and ended up at the Atlanta FFC.

    However, the doctor I mentioned in my previous post, Simon Rees, treats your overall body. Not just CFS or FM. Field Control Therapy helps a lot of different diseases/conditions. My doctor's website lists everything that can be helped with Field Control Therapy.

    I went to the Atlanta FFC for 4 months. I thought they were the answer to my prayers. However, they messed up my hormones something bad. Their treatment gave me a breast cancer scare and as a 2 time breast cancer survivor, I did not feel it was in my best interest to continue treatment there. I met a person and have read posts here that they did get better. On the flip side, there are posts on here from people who weren't better after a year of going to the FFC and they have spent over $10,000.

    I just don't want you to go to the expense of flying over to the US and going to the FFC if Simon could help you.

    I probably spent $4,000 in the 4 months at the FFC (including IV's, supplements and appts). It was also a 58 mile trip (one way) for me which cost me $20 in gas.

    Going to my current doctor who uses Field Control Therapy I've spent approx. $640. That includes the office visit, remedies and $100 fee for writing a letter to my disability insurance co. He's also just 3 miles from my home. I think I've hit the jackpot!!

    Of course, treatment is a personal decision and what may work for 1 person might not work for the next person.

    Maybe you could call him for a consulation and then decide what you feel is best.

    My doctor has a FM patient that he has been seeing since September. She is now able to go shopping without pain and without fatigue. Hearing her story made me realize there is a light at the end of the tunnel.

    I wish you health and happiness as you seek out treatment.

    Good luck,
    Auntyem
  7. Marta608

    Marta608 Member

    I don't think anyone addressed your question as to the meaning "very aggressive" treatment. Jacob Teitlebaum's regimen is an example in my opinion. He does an analysis, then socks it to you, all the meds, supplements at once, many of them. This would worry me because, if you reacted badly to one, how would you know which one to eliminate? More about this at www.endfatigue.com. He also has a questionaire you can complete and, for a sum of money, a computer analysis of your questionaire will be done. There is a simpler one and an indepth one. Of course the latter is more expensive. You might try that before coming here.

    You must make your own decision, of course, but if I were you I'd save my money until people here in the US actually got cured by someone. Right now we're all lab rats. Squeak.

    Marta
  8. deliarose

    deliarose New Member

    Some of the Brits on the board speak very highly of Dr. Sarah Myhill in Wales.

    I'm not clear if she's a regular doc or an alternative. I think she's a conventional doc who also uses alternative treatments.

    Do a search under her name, you'll see what others have posted.

    I entirely sympathise with your dilemma. I am a Brit living in the US, and while I don't know much about the Irish medical establishment, I do know that the Brits seem to be very backwards in their approach to CFS/FM.

    That being said, you have to understand that medicine is a business this side of the Atlantic, and clinics such as the FFC and CFS experts can make a lot of money treating CFS patients, regardless of whether those patients get better or not.

    It's not a pay-by-results service.

    I'm not saying these docs or clinics are not bona fide, or that they're not helping people.

    But the feedback seems to be mixed. It's a judgement call.

    I have had CFS for 13 years. I THINK, think, I've had some success in the past couple of months by taking large doses of Vit D, probiotics, a sleep med (trazodone) and an electrolyte drink called Recuperation.

    Check out the FWIW protocol if you're interested in more on that particular protocol.

    It's probably not what you want to hear, but I just wonder if there isn't a cheaper way for you to stabilise your condition while you think about whether the FFC is your best option?

    I think the bottom line is you should realise that the FFC is not a slam-dunk.

    regards
    Delia
  9. mrdad

    mrdad New Member


    Hello ecoughlan!
    I assume, my being Irish and French (Britanny) that we are "celtic brothers". Although I'm 4th Gen, American,I did not escape my genetic Northern European connection. My CFS was preceded with Hemachromatosis, and iron-overlaod condition prevalent among many Northern Europeans espec. Irish and other Celts.
    I suggest that you get tested for this genetic disorder as it has very similar symptoms as CFS and can be much more serious untreated. Organ failure etc. Please be tested as it most often goes undetected and misdiagnosed.
    Best of luck, Hope you feel better soon!!
  10. deliarose

    deliarose New Member

    and realised my advice wasn't terribly good.
    I guess what it comes down to is this: What are your options?

    Have u checked out any UK CFS boards? Maybe you could find the names of some European experts/docs there.

    I know Dr Basant K. Puri at the Hammersmith Hsptl in London specialises in CFS. Don't know much about his treatments or track record though.

    Do bear in mind that most US patients of the FFC centers get the testing paid for by their insurance companies, so their out of pocket expenses are limited to the cost of supplements and treatments.

    Coincidentally, one of the women on one of the Yahoo boards I am on just started at the Denver FFC.
    She has had CFS and finally bit the bullet and decided to go with the FFC.
    She's pretty savvy so I'm interested to see what her experience is.

    So far, they have her on Meyer's cocktails, Heparin and something else I forget now.

    She refuses to buy her supplements thru them. Just collects the prescription and then finds the cheapest source on the web.

    All the best
    Delia
  11. ANNXYZ

    ANNXYZ New Member

    in my health . There are people posting here CONSTANTLY that after ten years ( like me ) of being ill, they find they have LYME DISEASE . Unless it gets treated ,
    then the hope for good health is elusive and we will keep wasting money on supplements that can never kill
    the bacteria making us terribly sick.

    I have been to two FFC's and I give them credit for
    helping me get diagnosed with lyme via the Igenex Labs
    test . It is the most relaible .

    I have very mixed feelings about the FFC , and think some of the doctors ( who cost a fortune ) are weak .

    Personally , before I spent $$$$$$ at FFC , I would get the IGENEX test anywhere I could to rule out lyme .
  12. cobie

    cobie New Member

    Hi. Dr Sarah Myhill has a good website from Wales .. You can email from her web site a 150 page book on cfs to get yourself started. cheers Cobie