Help! Torontonians - please recommend a good Dr!

Discussion in 'Fibromyalgia Main Forum' started by givebliss, Jun 3, 2003.

  1. givebliss

    givebliss New Member

    I know there's a good doctor list on the site, but I'm running out of the time and energy it takes to check each one out .. I need to know if anyone has actually been HELPED by any of these doctors, or other doctors in Toronto, Ontario. I've had CF for over 20 years and am afraid I may have to go on disability if I don't get help soon... I'm just getting worse.

    I appreciate any info my wonderful fellow Torontonians can offer! Thank you! Bliss Out.
  2. Jen F

    Jen F New Member

    here makes finding a good doctor rather difficult, let alone one who understands and supports Chronic Fatigue Syndrome.

    Many from my CFS support network see Dr. ? [brain fog}, oh yeah, Dr. Bested in Scarborough, but she is not currently taking new patients.

    Dr. Kerr near Yonge & St. Clair is a GP with a special interest in CFS/FM/MCS. Dr. Kerr likes to take a natural approach and is well versed in many alternatives. However, i get the impression she hates paperwork and is also very time conscious, often doing 3 things at once during your appointment. Since I frequently need forms filled out, she is not always the best choice for me. When I first went to her about 6 yrs ago, I had tests done that cost over $400 [fortunately I got that covered by my employee plan at the time]. She may still require those tests of every patient and they are not covered by OHIP.

    Dr. Philip Stuart near Don Mills and Lawrence knows about CFS, or at least the kind his wife had [However, she was able to somehow raise children and then later climb Mt. Kilimanjaro with him...so I don't know how severe it was/is, except that, according to him, her children thought that all mommies went to bed at 7 pm until they got older and found out that wasn't normal.] But at least since Dr. Stuart is a specialist [in infectious diseases] he was able to diagnose me and fill out my forms and I am very grateful. He is rather busy now with the whole SARS thing, and isn't always open to new ideas.

    Please keep my comments about any doctors to yourself [and those of us with CFS.] I just think I should let you know the positives and neg's with each, cause as you surely know, when choosing which doc is what you need, you must consider their personality and egos type also, right?

    Some CFSers go to Dr. Shirkey, but I think Dr. Shirkey is also sick. In fact, I believe I was just told he is off for a few months right now.

    There are a few other doctors who specialize in CFS, but I don't remember their names right now. You could phone the M.E. Hotline and ask for recommendations. I believe their phone number is in the phone book, actually maybe I have it handy. 416-222-8820 is the number on the latest brochure from ME Ontario, don't know if that is the 'Hotline" number, but says for info...

    Good luck!

    And hey, if you know a good therapist knowledgeable about CFS covered by OHIP, or low cost to those on ODSP, located near Duff & Eg. please let me know!!

    Thanks.
  3. Jen F

    Jen F New Member

    Website addy is www.meap-cfs.on.ca
  4. givebliss

    givebliss New Member

    Thanks for the site name and number .. I'll try those! It's funny .. Dr. Kerr was my Dr. a hundred years ago .. she was the one who first diagnosed my Candida, when everyone else said nothing was wrong with me. For that, I'll be forever grateful! But quite a few years ago she said was no longer going to work as a GP, as she wanted to focus on nutrition only.

    Of course anything said on this site I would keep confidential, and would hope that others would as well.

    Believe me, if I find any help, anywhere, I'll be sure to let all the wonderful people at this site know!

    Nice to have a friend in TO! How old are you and how long have you had CF?

    Bliss Out.
  5. Jen F

    Jen F New Member

    Hey Bliss, nice to meet ya.

    I not only have CF, I have CFS :)

    I like to distinguish between the two, since there are many causes of Chronic Fatigue, but not every one with chronic fatigue has Chronic Fatigue Syndrome. I feel it's important to distinguish that since so many people will say "Well, I'm tired all the time too!" Tell me you haven't heard that, eh??

    It's lucky I bumped into you as I so rarely come to this board these days. I actually came today cause I have a cervical disk problem with lots of inflammation, and have just been told about a product called Wobenzyme or something like that. Want to see what Pro Health has to say about that.

    Have you heard of it?

    I was born 34 years ago, but am not as mature as some people in their 30's probably because I don't have kids. And I look very young, so I've been thinking about not giving my age out anymore. Not that 34 is old. Just I like the thought of 'over 26' better.

    I have been off work for about 5 years now and been struggling with CFS for longer.

    My sitn hasn't been helped by lack of adequate support, constant stressful events, family deaths, low income and a 2yr fight for ODSP benefits.

    I think people who are diagnosed early, get adequate amounts of rest, excellent nutrition [an anticandida diet with lots of colorful veggies], and low stress stand a much better chance of regaining good quality of life.

    How long ago were you born?

    what area do you live in?

    Do you live on your own?

    what's up with this crappy weather??? :)

    I cannot wait til we have consistent 20 degree days! I have trouble keeping warm and my functioning goes up in that temp. It would be awful if we go straight from this to the over 30 temps!!

    Nice to meet another Torontonian!

    We must tell the Americans we do not all have SARS!!! :)

  6. givebliss

    givebliss New Member

    You're right Jen, we must tell our American friends that we are Sars-free! And West Nile/Mad Cow free too! God, is it the end of the world, or what? All that, along with the weather from another planet (I have NEVER seen weather like this), AND CFS makes me wanna take bets on what will kill me first! I can't function in extreme heat or cold, and I've no aircon in my house or car, so I'm dreading the really hot/humid days to come.

    I thought CF was just an abbrev. for CFS or CFIDS, but I see whatcha mean. Sorry about your discs .. I've never heard of the wobie product.

    I'm really sorry to hear that you're having to fight to get ODSP. Did the last company you worked for not have disability benefits? Mine does, but I'm not sure I'd qualify, having lived with this for so long. I'm finding it really hard to continue working, and some days feel I can't continue 1 more day.

    I'm 38 and have had CF since I was 16, though I didn't know what the hell it was until recently. I thought all the depression and fatigue was due to the Candidiasis, but it ain't. Unfortunately, I've no support either, from friends or family. Do you have any depression, and are you on any meds?

    I'm divorced with a 13 yr old son .. live east of the Beach area. The great thing about kids is that, as they get older, they become more of an asset than a liability, strictly in terms of energy. Mine is a wonderful help to me, although I'm very careful to keep it to a minimum so he doesn't begin to feel like the parent!

    Bliss Out.
  7. lucky

    lucky New Member

    I was reading your message with interest, Jen, and have to agree with you that it is very hard to find a CFS-doctor in Toronto.
    I have been seeing Dr. Sherkey, but the last time when I saw him, he was too ill himself which was over one year ago. However, the few times that I did see him, he was really into the treatments of Dr. Jay Goldstein in California (I believe he just retired) who was doing a lot of research on CFS connecting it with chemical imbalances in our brain. Dr. Sherkey introduced me to Ritalin at that time which has been extremely helpful in having a little bit more quality of life. Right now he is not well again and will be back in his office by July.
    I live in Port Credit and luckily have a family doctor who has educated himself to understand this illness which is of some help. However, as you both know, the doctors today are pressed for time, so you have to do a lot of your own research before a visit.
    Jen, who is your main healthcare provider? I also have been ill for more than 20 yrs., but am not a great one for alternative treatments, since I had no luck with them.
    I believe there should be more pressure on our government, if they recognize CFS/FMS as an illness, to be providing us with doctors who treat these illnesses. But our bueorocrats are not even writing back when addressing this problem.
    If anybody else in Toronto or around Toronto, reads these messages and knows of a good doctor treating CFS, I also would love to hear from them.
    Take care and all the best, Lucky
  8. Shirl

    Shirl New Member

    You were talking about? I found this article on the 'Home' page by him. Maybe it might help all of you........ You can go to the 'Home' or 'Library' links and look up more of his articles if you like.

    Sorry, I am not a Canadian, but you sure live in a beautiful country!

    Shalom, Shirl
    ____________________________________________________________

    Jay A. Goldstein, M.D.’s Unique Treatment Protocol for Chronic Fatigue Syndrome & Fibromyalgia
    ImmuneSupport.com

    03-03-2003

    By John W. Addington
    Editor's note: As of April 2003, Dr. Goldstein has retired from medical practice.

    "Miracles are happening in the lives of Chronic Fatigue Syndrome (CFS) and fibromyalgia (FM) patients every day, thanks to Dr. Goldstein." That's how Katie Courmel, writer and CFS patient, sums up the benefits to Dr. Jay Goldstein's unique CFS/FM treatment protocol.

    Dr. Jay A. Goldstein is director of the Chronic Fatigue Syndrome Institute of Orange, California. His background as a medical doctor is in psychiatry and family practice, but for a number of years now, he has specialized in the care of CFS and related disorders. Dr. Goldstein has lectured and written extensively on this topic, including his latest book, Betrayal of the Brain. To help explain Dr. Goldstein's approach in layman's terms, Katie Courmel has written the book, A Companion Volume to Dr. Jay A. Goldstein's Betrayal of the Brain.

    CFS and FM as Neurosomatic Disorders
    Dr. Goldstein's CFS/FM protocol revolves around his understanding of these ailments as neurosomatic disorders. In helping to define such disorders, Dr. Goldstein says patients afflicted "do not feel, think, or function properly because the brain does not handle information properly." According to his research, Dr. Goldstein believes brain circuitry and transmittal of data for proper bodily function and health have become altered in conditions like CFS. Further, Dr. Goldstein comments "how the brain, the immune system, and the hormonal system simultaneously regulate the function of each other…is usually 'out of whack' in various ways in patients with neurosomatic disorders."

    Dr. Goldstein believes that neurotransmitters, chemical substances that act as information messengers in the brain, are abnormally low in this condition. Norepinephrine and dopamine are two such neurotransmitters lacking in CFS patients. When these are decreased, the brain has difficulty assessing relevance of the numerous messages it constantly receives. Because of this, mentally challenging situations such as taking a test or sensory stimulating situations such as a shopping at a mall can be overwhelming.

    Another cause of this easily distractible state is elevated levels of substance P. Substance P is a chemical that transmits pain messages. Overproduction of substance P results in increased sensations of pain. Dr. Goldstein believes elevated amounts of this pain messenger found in CFS and FM are interrelated with their hypervigilant state, and can contribute to anxiety and panic attacks.

    Cause of Neurosomatic Disorders
    Dr. Goldstein enumerates four factors as influential in the onset of neurosomatic disorders. To begin with, persons can have varying degrees of genetic susceptibility to this kind of ailment. A second contributing factor is if during childhood one is made to feel unsafe for intervals of time. Such developmental problems can increase substance P and cause hormone levels to deviate. A third influence could be viral infection in the brain that alters proper neurotransmission. Dr. Goldstein describes the fourth factor as a potential outcome of the first three: "impaired flexibility of the brain…to deal with changing internal and external circumstances."

    Despite all this talk about altered mental states, Dr. Goldstein does not believe that CFS is purely psychiatric in origin as some imply with the phrase "it’s all in their heads." Dr. Goldstein explains it this way, "The ludicrous and overly restrictive term 'psychosomatic' should be discarded into the rubbish bins of history. It states that apparently [unexplainable] symptoms must be a result of mysterious ‘unconscious’ conflicts which cannot be measured or even proven to exist."

    Diagnosis
    "Receptor profiling" is a method of diagnosis used by Dr. Goldstein to determine which of the brain's biochemical pathways are not functioning properly. This involves administering a series of drugs to the patient, one at a time. Each of these drugs is known to target specific brain pathways. Thus a patient responding to a particular drug indicates the brain pathway likely to be contributing to that particular patient's symptoms. Once that is known, various drugs that can normalize the faulty pathway are tried.

    Katie Courmel lets patients know what to expect during their first appointment with Dr. Goldstein. "If you visit Dr. Goldstein's office, you may spend as much as two or three hours of your first day in an initial consultation with the doctor. This involves a detailed reading of your entire case history, with questions and answers interjected. During this period, Dr. Goldstein will begin his drug treatment protocol, starting with those drugs that have the most fast-acting profile. He may try naphazoline 110 eye drops, which may take effect within seconds. He may also try nitroglycerine under your tongue, which may act within minutes. You will then take a series of tablets or capsules that are longer-acting, taking effect within 30 to 45 minutes."

    "Throughout this process, Dr. Goldstein will frequently ask how you are feeling. If you suffer from pain, he will check the sensitivity of a few select FM 'tender points' to help assess the effectiveness of a drug. If you suffer primarily from fatigue and find a drug that revives you, Dr. Goldstein may have you run up and down stairs to see if the drug really works. If cognitive disorders are a main complaint, you might read and discuss a magazine article after the administration of a drug that makes your head feel clearer."

    Once this diagnostic process is complete, Dr. Goldstein will be able to tailor a treatment regimen specific for each patient.

    Treatment Plan
    Dr. Goldstein's primarily treats through the use of various combinations of medications. He explains his care this way, "The goal of therapy is to induce the brain to secrete the appropriate amounts of chemical neurotransmitters so that information to be processed will be selected appropriately. I have devised a decision tree which helps me to rapidly discover in most cases which brain chemicals and receptors might be dysregulated. This process usually takes about an hour at the initial visit.

    I use medications which target one particular receptor and administer them in nasal sprays and eye drops. They attach to receptors on nerves in the head and may cause a patient to feel better, or sometimes worse, within seconds. I then may use other rapidly acting medications which affect the same, or related, receptors. My goal is that the patient feels completely normal. He/she remains in the office trying selected medications in succession until all symptoms resolve. This result requires an average of three office visits, but may occur in two seconds or two years."

    There are several medications that have proven to be very useful for patients who have been bedridden for a year or longer. Dr. Goldstein calls these his "resurrection cocktail." A main component of this "cocktail" is ketamine administered intravenously or through a gel. Other components provided intravenously are ascorbate, lidocaine, and thyrotropin-releasing hormone. Nimotop and Neurontin, both administered orally, are also included in the list of medications most likely to aid CFS patients.

    Most of Dr. Goldstein's CFS patients benefit from his therapy. Courmel says that 50% of patients feel dramatically better after the first day. Another 25% feel better the next day and eventually a further 20% substantially improve. That leaves 5% of patients that Dr. Goldstein is not able to help much.

    Natural Treatments
    While Dr. Goldstein's primary focus is on drug therapy, there are natural treatments and remedies he recommends for CFS as well. These include Acetyl-L-Carnitine, Vitamin B-12, DHEA, Ginkgo Biloba, Ginseng Saponins, Gotu Kola, Honey Bee Venom, Kava Kava, and St. John's Wort (Hypericum). The two he finds to work best are Kava Kava and St. John's Wort. Source Materials:
    Courmel, A Companion Volume to Dr. Jay A. Goldstein's Betrayal of the Brain. (1996)

    Galvin, Receptor Profiling as a Guide to Treatment www.drjgoldstein.com/articles/receptors.html

    Goldstein, Betrayal of the Brain (1996)

    Goldstein, My Current Approach to Neurosomatic Disorders, www.drjgoldstein.com/articles/neurosomatic.html

    Goldstein, The Pathophysiology and Treatment of Chronic Fatigue Syndrome and Other Neurosomatic Disorders: Cognitive Therapy in a Pill Alasbimn Journal, 2(7) (April 2000)











    [This Message was Edited on 06/03/2003]
  9. lucky

    lucky New Member

    Yes, this is the doctor I was talking about, Dr. Jay Goldstein. I have been interested for a long time in his research and from many other researchers I also believe that our damaged brain is the main problem for having CFS. My family doctor shares his opinion that a virus is or was the reason for our chemical imbalances. The doctor in Toronto who I saw (who has CFS himself) follows Dr. Goldstein's protocol and has studied and been in constant contact with Dr. Goldstein because he knows that this is the only reason for his own illness. He was the one who following Dr. G's protocol tried with different meds to activate or better stimulate brain cells (which of course, is trial and error). When you go on Dr. Goldstein's website again, you'll also will read what type of meds he is using to just do that.
    This Toronto doctor was the one who found that in my case the Ritilin was of great benefit. I am still on it, however, I believe it needs some updating.
    Were you aware of Dr. Goldstein and his research? If a virus has been the culprit and damaged the hypothalamus etc. everything is out of balance, from the immune system to hormones, to pain, etc. etc.
    Nice hearing from you, Shirley and hope you are not overheating at 30C., you can send some of the heat down here, it was quite cool today.
    Sincerely, Lucky

  10. Jen F

    Jen F New Member

    "Torontonians without SARS! 06/03/03 01:45 PM

    You're right Jen, we must tell our American friends that we are Sars-free! And West Nile/Mad Cow free too!"

    LOL!

    "God, is it the end of the world, or what? All that, along with the weather from another planet (I have NEVER seen weather like this), AND CFS makes me wanna take bets on what will kill me first!"

    I HEAR YA!!

    "I can't function in extreme heat or cold,"

    Me neither these days...

    "and I've no aircon in my house or car, so I'm dreading the really hot/humid days to come."

    Yup...time to move to Victoria, I think. Didn't rain as much as people think when I was there, nor when I lived a summer in Vancouver.

    "I'm really sorry to hear that you're having to fight to get ODSP."
    HAD fight. Finally won benefits, but all the legal arrangements and the paperwork, and the stress of not knowing what would happen to me and having to get by on welfare and food banks for several months did not help...especially not with the Harris cutbacks to welfare.

    I'm surviving financially now, but the damage has been done.

    " Did the last company you worked for not have disability benefits?"

    Yes, but my employment was terminated after I returned from some time off sick, with no specific reason given. I received not so great legal advice and so didn't fight the termination. I figured I just needed some rest anyways, and wasn't happy at my job, so maybe for the best. But, my health continued to deteriorate and I could work less and less so never took another full time job.

    I regret not knowing when to stop working -- I pushed myself for far too long and let everything else in my life fall apart, just so I could make it to work. Studies have indicated that people who get diagnosed earlier with CFS and stop working and get the rest and treatment they need have significantly higher rates of recovery than people who continued working for some time after developing severe fatigue and other problems.

    I should have applied and qualified for disability benefits. It's almost always a fight for benefits with this invisible illness, but I might as well have fought the insurance co [if necessary], as fight the gov't for dis bens.

    As they say, hindsight is 20/20

    "I'm 38 and have had CF since I was 16, though I didn't know what the hell it was until recently."

    Oh my goodness!

    "Unfortunately, I've no support either, from friends or family. "

    OH, man....Its so hard...

    I was so happy when I found my first CFS support group. Finally people who could relate to what i was experiencing. Finding this site about 1 1/2 yrs ago was also quite exciting.

    "Do you have any depression, and are you on any meds?"
    OH YEAH...

    In fact just transitioning from Celexa to a St. John's wort product.

    "live east of the Beach area."

    aww....not close to me...

    So good to read that your son helps you!! That's excellent. He must be a caring and kind young man.

    "Jen, who is your main healthcare provider?"

    When I moved to my previous location, I went to "Joe Blow" MD, who was the first mD I found close to me taking patients. I realized I had CFS and also that he was not educated on that nor likely to give me a diagnosis. So, i researched it myself and went to see Dr. Kerr for help. But she does not want patients as a GP, only to help us with our CFS, so I went without a proper GP for quite some time.

    Then I got a GP at a walk-in clinic, recommended by the lawyer that helped me with my dis claim. One day last year, I called to make an appt and was told that doctor no longer worked there. I was given no forwarding info and it seems she is taking an extended period of time off. Why? I don't know. So, i saw whatever doc at the clinic and lately have stuck with one who has certain attitudes/beliefs about CFS that don't jive with me. But, he means well, I think.

    I would see Bested if she weren't so far from me and if she was taking new p's!

    " I also have been ill for more than 20 yrs.,"

    That's awful!!

    "I believe there should be more pressure on our government, if they recognize CFS/FMS as an illness, to be providing us with doctors who treat these illnesses."

    Absolutely!! And I am very concerned with how many health proffessionals in To still seem to think that CFS is a psych illness. That attitude, in my opinion, is preventing more research into physical causes.

    Okay, my arm is killin me. Time to quit.

    Nice to see both of you on this site!

    J.

  11. lucky

    lucky New Member

    I have a suggestion, after reading your last e-mail. The Environmental Health Clinic at Women's College Hospital in Toronto, if they do nothing else, they will give you the appropriate tests and give you a proper diagnosis of your illness and also get in touch with your family physician for further treatments. In your case, this would be a big help to at least find out where to turn to.
    And may be they also have referrals to other doctors who are on their board.
    I was one of their first patients, however, after the initial tests and another diagnosis they were of no further help to me. However, they have good and knowledgeable doctors there which was great at the time when I went.
    Hope, it helps a little and good luck, Lucky
  12. Jen F

    Jen F New Member

    That's kind of you.

    Yes, I may use the services of WCH Environmental Health Clinic sometime. But, I have, by now, had the appropriate tests and I do have a diagnosis.

    I find that right now I go to different doctors for different needs, recognizing what each medical professional has to give and what their limitations are also.

    But, I do wish I had an excellent GP that had an office close by and was an expert in CFS.

    I got caught in the rain today without a brellie! How bout you?
  13. lucky

    lucky New Member

    I just read your message and was just working on a letter to our member of parliament complaining about the care we are getting with this illness.
    This I find is the most frustrating part, although I am not complaining since I have a family physician who really tries to help. But, it is not enough in the sense that with all the many things which are wrong, the time is not enough to get into all the details at times.
    If our government recognizes CFS/FMS I believe there should also be an obligation to at least refer us to doctors who are specially trained for these illnesses or at least who are updated on them. All the Canadians I have met on this site all have the same complaint.
    But....the good news is, that because of so many new disability claims and paying out all the money, big companies are waking up to the fact how costly this illness has become and hopefully will put some pressure on.
    What a beautiful spring we have, cold and rainy. We had better weather in January in Hilton Head when we spent the winter there, hard to believe. I did not venture out too far today, and the umbrella did a good job getting me from the car into the Mall.
    Will continue to work on my e-mail to the MPP - has to be done.
    Take care, Lucky

    P.S. I just remember, if you look at the Ontario Medical Association Website I believe, there you will find out according where you live what doctor is taking new patients. But, make sure they understand CFS, otherwise it is a waste of time.
    I just interviewed a new doctor around where I live and she was rather keen to get rid of me because of my many health problems and told me so in other words. I just was curious what another doctor had to offer, and am happy to go back to my old one, he at least knows what I am talking about.

  14. MarieTourond

    MarieTourond New Member

    Hi there all you Torontonians. I too am looking for a good dr, but to treat FM. My dr is just a general practioner, but she knows a lot about it and send me to specialists.
    I live in Scarborough.
    I would like to find a good Pain management dr here in Scarborough the specializes in FM.
    Anyone know of any??? Would be grateful for any help I can be given.
    With my FM, I have a lot of CFS symptoms.
    Hugs Lee