pianowoman

Discussion in 'Fibromyalgia Main Forum' started by roge, Mar 17, 2007.

  1. roge

    roge Member

    Hi ,

    Believe you see Dr. Bested in Toronto. I am in Ottawa and am close to seeing a specialist in USA (maybe Dr. Levine) but I have considered seeing Dr. Bested as I know she specializes in CFS and FM.

    Obviously I would prefer Dr. B over USA as closer and cheaper as OHIP would fund this but I wonder how detailed a work up she does, ie. I want detailed bloodwork re: infectious and detailed immune testing, have you done this and if not, do you think she would? Maybe she has same problem as my Infectious Disease dr. in Ottawa as he says he cant even order some tests (ie. chlymadia pnemonia - a bacteria) as the Onatario Public Lab wont allow it - I dont think he is lying to me although a possibility, do you think you could ask Dr. B at your next visit if she is able to test for this and mycoplasma and say HHV6 and if she can can do more detailed tests for my immune system, ie. Lymphocyte sub pop analysis which is a further break down of this type of white blood cell as mine are low. wonder if she can order a test to see how many NK cells I/we have and their activity? She is a hematologist and that is the dr. for WBC issues.

    Overall, how do like Dr. B in terms of

    A. compassion
    B. help with disability
    C. knowledge
    D. willingness and ability to investigate the cause with detailed testing
    E. treatment

    Thanks so much.

    Peace
  2. roge

    roge Member

  3. coolma

    coolma New Member

    Dr. Bested is the leading person to see for CFS. She is tops in this, bar none. I know many people who have seen her. I saw her for FM. She is most thorough, pleasant, does more bloodwork than any doctor I know and has a thorough program. Just be prepared to wait awhile in her office!
    Please tell anyone they don't need to go to the U.S. She is the top hemotologist in North America. We are blessed to have her in Canada.
    Good luck! Please pass the word.
  4. Pianowoman

    Pianowoman New Member

    Dr Bested does a very comprehensive panel of blood tests including several viruses. I have been tested for EBV, CMV, HHV6. She tested the immune system, including NK cells ,thyroid. some nutritional things as well as the ususl stuff, I can't remember it all right now. There are some tests that connot be done in Canada, that is true. You can get some PCR testing done here but it is not covered and I'm told it is quite expensive.

    From what I have seen, over the years, her knowledge is excellent. She spends time at conferences and networks with the international specialists. Everything I have mentioned from this board, she seems to know about! You may know that she has recently written a book called Hope and Help for Chronic Fatigue Syndrome and Fibromyalgia.

    She is a passionate advocate for her patients and does a lot of speaking and appearing on local media to raise awareness. She also teaches at the U of T Medical school.
    I have found her to be very caring and compassionate.

    Even though she has not used some of the new therapies that are talked about here, she has agree to follow me as I try them. If it makes sense to her, she's open to them. She would make sure that you had adequate pain and sleep meds and anything else you needed.

    Her clinic is Integrative and she works with a Naturopath. That really makes our treatments more comprehensive. I believe that if you are referred. you would see Dr Beaulne ND first and she is not covered by OHIP so you would need to be aware of that. They run education and support groups out of the office, as well as a more advanced CBT group for those interested. They have a web site www.thedoctors.ca

    You can get IV treatments there such as Meyers Cocktail, Gluathione, some Chelation treatments.

    This is long, sorry, but over all, I have been more than pleased that I have a Doctor who truly understands my illness and works hard to help me recover.

    Kathy
  5. roge

    roge Member

    thanks so much to you both!

    Certainly sounds like Dr. bested is the dr. to see in canada. I read she only takes canadian patients cause she is so busy.

    I called and left a message a few days ago asking if I could see her just for testing as I already have a naturopath in ottawa. Sounds like there could be a 6 mth waiting list which i am not prepared to wait. ya looks like she would be able to order some more of the detailed testing I want..ie. NK, HHV6, ect. but like you say, there will be definitely some she wont be able to and her hands will be tied like my Infectious disease dr. here with respect to the Public Labs. I dont know who the Public labs think they are but I would love to get a piece of whoever is making these decisions that certain blood work is not allowed.

    By the way, PCR testing can be done in Canada, well my ID dr. here said he will have to battle hard to get it as I was IGG positive to parvo b19 and so ordered a PCR now...

    who knows my ID dr. here is getting better each visit (told me at my 3rd visit that he believes in CFS and FM and knows people with it and maybe even has a few patients) and that he believes me and is taking me seriously, so this is good, so who knows maybe next visit he will agree to do some more detailed immune testing and HHV6. I am not going to hold my breath though and why I need a contigency plan of going to USA or at least ordering the blood work I want from USA labs.

    Peace

  6. Pianowoman

    Pianowoman New Member

    Good luck with your testing. I hope that you can get what you need with your Doctor. I would be interested in how things work out so I hope you can let us know.

    Kathy
  7. shanel06

    shanel06 New Member

    Just wanted to speak up here about Dr. Bested.

    I've had this DD for.. 18 years or so now, and seen numerous doctors and various specialists. When I first read about Dr. Bested, and heard about her from other patients (including some doctors who were her patients) - I hesitated. First, I'm not a fan of new doctors period :) And secondly, anyone as good as people were claiming couldn't possibly be compassionate, or willing to listen to their patients. And I am someone who very actively participates in my medical care - to an extent that alot of doctors don't like it.

    After running out of options, I first saw Dr. Bested last year. First I went through Tracy Beauline. I was highly sceptical of that step as I'd been to see naturopaths several times without any truly noticeable result. My first comment is that Tracy Beauline was a God send - I take quite a few supplements on her direction, and I notice remarkable improvement with them alone. Truly remarkable.

    As for Dr. Bested ? She is a pleasant surprise. Extremely thorough, very receptive, willing to listen to my questions and frustrations. I think she has tested me more than almost every other doctor I've been to in the past 18 years combined.

    Most of the test she's done have been covered by OHIP. Some have not been, but thus far haven't been expensive. I have had blood tests sent to the U.S. in years past - and I will happily do that again if she suggests it. Yes, it can grow to be expensive. But after this many years of struggling with this DD - if you told me to stand on my head in the middle of Hwy 401 buck naked I think I'd give it a try.

    I haven't heard back about all my test results. I just wanted to say - she is worth the wait. I know the idea of a 6 month wait seems excrutiating, but trust me, with this DD it's worth it. I've waited longer to get into see some specialists in the past, and they weren't worth the wait - nor were they as compassionate, knowledgeable, nor did they seem to give a dang like Dr. Bested does.

    But either way, I hope you find some help in getting the tests you want. Wherever you can find it :)

    Shannon L.
  8. roge

    roge Member

    Thanks a lot for all those who weighed in on dr. bested. there is no doubt in my mind she is the best in canada and is a great doctor.

    However, I heard back from the clinic and I must say i am disappointed in the protocol here as in I must see the naturopath first for 3 visits to be able to see Dr. bested. and that I must still the naturopath on a continuing basis alternating with my visits with Dr. bested.

    This is totally impractical and just not possible for out of town patients. I am not going to drive 4 hours 2x/mth to see the naturopath and her. This is rediculous and I am even more frustrated with the canadian medical system. I simply want to see Dr. Bested for 2-3 visits to discuss destailed testing and what she can order here and covered by OHIP and what she would suggest for testing in the USA labs, yet it would appear this is not possible.

    I believe a team approach with her and naturopath is good as I have my team here which includes a naturopath but to insist that I have to see that specific naturopath 3x first before I can even see an OHIP funded doctor is rediculous. They should make an excpetion for patients who live at least 3 hours out side of Toronto as I do.

    Peace