what to do now? Canada

Discussion in 'Fibromyalgia Main Forum' started by joanie19595, Jun 6, 2006.

  1. joanie19595

    joanie19595 Member

    CFS for 14 years , Newfoundland , Canada
    No specialists here. Family doctor doesn't understand this illness. Am severely fatigued this year , no break , heavy head, no food seems to interest me although I am a good eater and used to look forward to food. 47 yrs. old , Perimenopause?
    Am on zoloft, Idarac [pain], xanax for sleep, q10 enzyme, garlic, 5htp. Don't know where to go from here, am too tired and sick to live. Don't feel overly depressed. Should be lol.
    Would travel if I could find a specialist in Canada. Do anyone know of the treatment Dr. Alison Bested of Toronto offers?
    Any response would be wonderful. Please respond.
  2. tonakay

    tonakay New Member

    and can't help you but here's a bump back to page one...... good luck!!!!

  3. joanie19595

    joanie19595 Member

  4. Pianowoman

    Pianowoman New Member

    First of all, I have heard that there are people in Nova Scotia that treat this so I would do some research around that. Maybe some of the other Maritimers will chime in. There have been some threads about this recently.

    I have been seeing Dr Bested in Toronto for 4 years. She really knows her stuff. I had extensive testing initially and I get tested approx. once a year. There are some tests that she doesn't do routinely as they are not covered and very expensive. She will do them if you choose.

    There is a Naturopath in the office as well and they work together. Some of my treatments, diet, supplements etc. are recommended by the ND and some by Dr Bested. Some of the treatments I have had include, detoxing for high mercury levels, thyroid supplements, Myers cocktail IV, B12 shots, Transfer factor, many supplements and diet changes.

    She also teaches an 8 week course on managing your illness.This includes things like meditation and pacing yourself which she stresses very strongly.

    I'm not sure what the waiting period is for her. I think that currently, one has to start with the Naturopath for a few appts. and she starts you on the program and then you see Dr Bested. She has a huge patient load and tries to manage it this way, at least for now.

    She has just written a book which you can order on amazon. I think it will be very helpful, especially for Candian patients.

    This is long but I hope helpful. Good Luck

  5. shanel06

    shanel06 New Member

    Dr. Bested's waiting period isn't as bad as I thought it would be. My doctor called in the referal in mid June, and my appointment (with the naturopath) is scheduled for August 18th.

    That's better than the waiting period for a rhematologist here (called in January of this year, appointment is late October). Heck, even my appointment with a surgeon took proportionately longer I'd say considering I'm in pain until I have an appt with him - called in referal in mid June, appointment late July LOL

    I'm not sure how I"ll swing the naturopath fees to be honest, but after 18 years with this DD, and since I am starting to lose hope - I'll do whatever I can just to regain some hope. But believe me, I understand the problem with costs. This is not only a frustrating DD - it's a costly one !

    Shannon L.
  6. Pianowoman

    Pianowoman New Member

    I'm so glad you were able to get a fairly quick appt.I think they know what they are doing, although it does take a little time. It is just so reassuring to talk to people who take you seriously. Let us know how it goes.

  7. lucky

    lucky New Member

    I am curious and interested if Dr. Bested helped anybody that they started feeling better.

    I am in the same boat as some of you are and have CFS for almost 20 yrs. and after seeing a well known CFS doctor who was of no help at all, I am slowly losing hope of ever feeling better. I had so much hope that the CFS doctor would be of help, but he was not even very professional in that he promised things or told me that I needed medication for my heart and when I phoned him about it he said that he never mentioned this. He certainly took my money, I had all types of tests for brain and heart and some of them clearly showed that things were not right. There was never any suggestion of what I could do about it. The last thing he wanted me to do is see a neuropsychologist who wanted $2.000 for a one day test. I am happy that I did not make an appointment because I am interested how to cope with my fatigue and immunological and neurological problems first and not what I might forget in 5 yrs. time due to a minor athrophy which showed up on one MRI. In the end he blamed my CFS on the athrophy which we all get when we are getting a little older. Of all the doctors I have seen so far, he was the least helpful and with all his credentials my time, money and energy was wasted. I still cannot believe it.

    Therefore, I am very reluctant to see anybody who prides themselves as the expert on CFS/FM after this letdown.

    May be some of you have any good advice or know a good doctor who knows how to treat people with CFS/FM.

    Thank you and take care, Lucky

    [This Message was Edited on 07/05/2006]
  8. Pianowoman

    Pianowoman New Member

    Dr Bested has helped many people including me. It is not an easy road but she really knows her stuff. She is a very caring and compassionate doctor.

    You might want to read her new book to help you decide if she is what you want. The book is called Hope and Help for Chronic Fatigue Syndrome and Fibromyalgia. There are 2 or 3 chapters by a Naturopath and a chapter by a disability lawyer. It is newly published and available on Amazon and probably other sites.

    [This Message was Edited on 07/11/2006]
  9. springrose22

    springrose22 New Member

    After reading these posts, I would go and see her. Rheumatologists are useless. Marie
  10. lucky

    lucky New Member

    for your replies. However, I am very reluctant to see Dr. Bested because for once I do not agree that you have to spend $300.00 on the naturalpath before you even see her. It is not the money but the principal. I have seen so many doctors over the years and also was treated among others by a CFS doctor who had the disease himself who mentioned also that her kind of treatment would not be for me. By the way, I have more CFS than FMS and know that only certain medications will help my quality of life. However, I also had a mini stroke last October and was taken off some of the meds which really helped me. On top of the meds I also use herbal and vitamin pills, but am not a firm believer that they are the answer to my health problems.

    Certainly I will give it another thought, and I am sure that Dr. Bested is an excellent doctor.

    Best wishes, Lucky
  11. maps

    maps New Member

    When I was first diagnosed I tried water arobics and met two other people with cfs. They gave me a list of dr's to see including Dr Bested who they were both seeing.

    The waiting list was too long for me so I chose another dr. Ispoke to one of the women six months later and she told me that she was so much better and would be looking for work soon.

    So I do kmow of one person cured by dr Bested. My dr told me about her book which I will get just to see if she has more to offer than mine, although I know they both work together.

  12. krysa

    krysa New Member

    in the Environmental Health Clinic at Sunnybrook & Women's Hospital in Toronto.I was trying to get there 3 years ago but... You need to fill out the questionnaire they will send you and you need your physician referral. My doctor refused to give me referral so I couldn't go. I was told then that dr. Bested would do all the necessary tests and then send me with the result and recomendations to another doctor.
    You can ask about that when you will call dr. Bested office or you can call Environmental Health Clinic. I have phone number but I am not sure if I can post it. I am not sure if dr. Bested still does that. Last time I spoke to them was in February 2003.

  13. lucky

    lucky New Member

    I wonder if you could give me the name of the CFS doctor you are seeing. As far as I know you can mention the name, I have seen it many times here before.

    I am so reluctant to see a new doctor, since my last episode with this well known CFS doctor/researcher turned out to be a disaster. It costs me a lot of money and he was the least helpful of doctors I have seen over the years.

    Thanks for your reply. Best wishes, Lucky
  14. lucky

    lucky New Member

    for your advice. I visited the Environmental Health Clinic already about 9/10 yrs. ago and other than another diagnosis of CFS, I did not get any help there either. I was tested by Dr. Lynn Marshall at the time and the results of these tests were mailed to my family doctor. So, I don't know what to think anymore. With all the recommendations and doctors I have seen, I am getting sicker instead of better. There is no end in sight after almost 20 yrs. I am not giving up quite yet and might try to make an appointment with Dr. Bested. Are the visits covered by OHIP by any chance?

    I am amazed that your doctor did not want to give you a referral to the Environmental Health Clinic. Hard to understand.

    Best wishes, Lucky
  15. Pianowoman

    Pianowoman New Member

    The ME Association has a doctor referral service. They have a list of CFS friendly doctors that members have given them. I know of one person who got a good referral and one who wan't happy but it might be worth try. They have a web site www.meao-cfs.on.ca

  16. lucky

    lucky New Member

    I checked the meao-cfs.on.ca website but could not find a referral list of doctors. Do you remember any names?
    Thank you for your advice, Lucky
  17. Pianowoman

    Pianowoman New Member

    I think you have to phone them to get the names. Not sure why but....

    Good Luck
  18. lucky

    lucky New Member

    for your reply. I will try to phone tomorrow and will go from there.

    Take care, Lucky
    [This Message was Edited on 07/13/2006]

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