I contacted them via email asking them what kind of successes they had and was told simply that "ME/CFS is not cureable".
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My visits with Dr. Byron Hyde
- Thread starter Gamboa
- Start date
I contacted them via email asking them what kind of successes they had and was told simply that "ME/CFS is not cureable".
shannah
Senior Member
- Messages
- 1,429
I wonder if he'll be rethinking this watching the Rituxan trials.
Hi Dufresne,
I'm not expecting too much in the way of treatment. I think we'll have to wait a bit longer for any news on that front. I'm really just hoping to ensure that I haven't been misdiagnosed and have some easily treatable disease. Or worse, that I have some fatal disease that has been over-looked!
I also can't sit back and do nothing waiting for research to happen and find a cure for us. I feel that I need to actively investigate what is wrong with me in order to feel that there is something actually happening. Dr. Hyde is taking very good notes, in fact filling in a detailed chart that he prepares on each patient, so hopefully that can come in useful at some later date. Another researcher one day might need a clearly defined group of patients with CFS from Canada and Dr. Hyde will be able to produce such a group.
I'm feeling quite awful right now so must go. My next appointment with Dr. Hyde, #3, is this Wednesday. I'll let you all know how that goes.
Gamboa
Dufresne
almost there...
- Messages
- 1,039
- Location
- Laurentians, Quebec
Hi Gamboa,
Sounds like he's the right guy for you. I don't regret seeing him at all. It's great to have someone knowledgeable to help you navigate the canadian system. This he does very well. I had thousands of dollars of tests conducted: an MRI, ultrasounds, 24 hr holter, stress test/doppler, sleep analysis, etc. Everything covered. When I went in for the blood draw they took 35 tubes from me! -a personal record.
Hope you find something. Keep us posted.
Dufresne
- Messages
- 50
Hi Gamboa,
I've recently moved to the Cornwall area and have been interested in Dr Hyde for the past 9 yrs of this illness. I've just read your posting and am very curious about what you both will find and hopeful of what help you may get in dealing with this illness. I've seen Dr bested over the years, but have had no success of actual improvement. I, like you, feel that we have to try and be on top of the research. My husbands job had us living in Miami last year and I got to see Dr Klimas clinic and that was fantastic. I got some clear answers on my condition but unfortunately had to move back to Canada before more could be done with her. Now I am back in the no real help from doctors game and debating if Hyde and his expenses are worth it? I would like to follow your experience.
Good luck, Shannon
I've recently moved to the Cornwall area and have been interested in Dr Hyde for the past 9 yrs of this illness. I've just read your posting and am very curious about what you both will find and hopeful of what help you may get in dealing with this illness. I've seen Dr bested over the years, but have had no success of actual improvement. I, like you, feel that we have to try and be on top of the research. My husbands job had us living in Miami last year and I got to see Dr Klimas clinic and that was fantastic. I got some clear answers on my condition but unfortunately had to move back to Canada before more could be done with her. Now I am back in the no real help from doctors game and debating if Hyde and his expenses are worth it? I would like to follow your experience.
Good luck, Shannon
Boule de feu
Senior Member
- Messages
- 1,118
- Location
- Ottawa, Canada
Gamboa,
When you feel up to it, let us know how it went.
When you feel up to it, let us know how it went.
I just had my 3rd visit with Dr. Hyde last Wednesday and so far I am pleased with what he has done so far regarding getting tests done and ruling out other illnesses that could simulate CFS. So far, since my first visit March 26, I have had the following tests done:
24 Holter monitor
Cardiopulmonary Stress Test
Full body Bone Scan
Lots of X-rays ( lots of arthritis in neck and lumbar region)
Echocardiogram ( borderline mitral valve prolapse found)
EEG (no results yet)
Blood Work: lots: so far 2 batches done; regular stuff, lots of rheumatoid things (due to my aches and pains), blood clotting stuff, and infectious disease stuff---all results have come back and I don't have any rheumatoid-like illnesses or infectious diseases. My EBV results were all positive which is typical for us cfs'ers; possible ongoing infective state. He tests for all sorts of crazy stuff such as Legionnaires, Dengue, Lyme, West Nile, Syphilis, lead, aluminum, zinc, fibrin D-dimer,C-peptide, HLA B27, different autoimmune tests, citrullinated peptide AB, cystatin C, factor X11 etc...
I am booked for the following tests later this month:
Stress Echocardiogram ( to further investigate mitral valve)
2 day Cardiopulmonary Stress Test at Cornell University in Ithaca New York ( to investigate post exertional malaise). It is not done in Canada yet.
MRI of brain and spine.
Pelvic, abdominal and thyroid Ultrasound
He retrieved a past stomach biopsy I had done to rule out H pylori and Celiac and is sending it to California (free of charge) to have it examined for Enterovirus. I forget the name of the doc there who is doing this.
The costs so far: $3000 : fee for Dr. Hyde for 18 months.
$1000 : fee for Cornell University
$35 : for 1 of the blood tests.
Everything else is covered by OHIP for us lucky Ontario residents. I can't imagine the cost for people who have to pay for all the above tests. For any of you reading this who don't live in Ontario I have no idea how Dr Hyde does things. I'll ask next time I see him.
Regarding the Cornell Test: this is new for Dr. Hyde. He has arranged for 3 of his patients to have this done and he is going with us to observe and learn what is involved. It is being done by Dr. Betsy Keller who is now researching CFS and PEM. She gave a talk at the CFS conference here in Ottawa last September. She is following the Pacific Fatigue Labs protocol and has found that people with CFS have measurable PEM. It proves beyond a doubt that there is a physiological reason behind PEM and it is not that cfs'ers are lazy and don't like to exercise. When I saw her speak last September I knew I wanted to do this so when Dr. Hyde asked if I would be interested to go down with him I was very eager, regardless of the cost. I have this done May 10th and 11th. He is also going to be speaking at Cornell while there.
Regarding the actual visits with Dr. Hyde: His office is in his home in a lovely neighbourhood in Ottawa. I thoroughly enjoy seeing him although you have to have patience. He readily admits he is one of the slowest doctors around. My first 2 visits were each 4 hours long and the 3rd visit, 2 hours long. He is a fascinating man and has many stories to tell so you have to be careful about asking him questions since it might involve a lengthy, albeit interesting , story. His office assistant Melena is wonderful as is his wife and previous office help.They all appear to thoroughly enjoy what they are doing and each other. I bring a magazine in with me so when he is looking things up in the computer, filling in my results or phoning to book appointments etc. I relax and read while drinking tea and eating cake that he has served. He has a dog that comes in and out to check things out. It is a perfect mix of a professional medical office and a home of a friend.
As to what I am getting out of this? So far, getting lots of diseases ruled out, more than just the common things that can cause chronic fatigue. I have gotten a huge amount done in the first month and he says this will be at least a 6 month journey, possibly more. If he comes the conclusion that I truly have real ME then at least I'll not wonder any more if I have something else. Plus when there is some treatment for it I will be ready for it and can perhaps participate in any trials. Dr. Hyde will have a list of patients to supply any drug company or researcher who is looking for "true" ME patients.
Hope this answers a lot of your questions. Fire way if you have any more. Once I am back from Ithaca I'll start a new thread reporting on the experience. I see that J. Spotilla (might have name a bit wrong) has a blog about this. She (he?) went this month.
Gamboa
24 Holter monitor
Cardiopulmonary Stress Test
Full body Bone Scan
Lots of X-rays ( lots of arthritis in neck and lumbar region)
Echocardiogram ( borderline mitral valve prolapse found)
EEG (no results yet)
Blood Work: lots: so far 2 batches done; regular stuff, lots of rheumatoid things (due to my aches and pains), blood clotting stuff, and infectious disease stuff---all results have come back and I don't have any rheumatoid-like illnesses or infectious diseases. My EBV results were all positive which is typical for us cfs'ers; possible ongoing infective state. He tests for all sorts of crazy stuff such as Legionnaires, Dengue, Lyme, West Nile, Syphilis, lead, aluminum, zinc, fibrin D-dimer,C-peptide, HLA B27, different autoimmune tests, citrullinated peptide AB, cystatin C, factor X11 etc...
I am booked for the following tests later this month:
Stress Echocardiogram ( to further investigate mitral valve)
2 day Cardiopulmonary Stress Test at Cornell University in Ithaca New York ( to investigate post exertional malaise). It is not done in Canada yet.
MRI of brain and spine.
Pelvic, abdominal and thyroid Ultrasound
He retrieved a past stomach biopsy I had done to rule out H pylori and Celiac and is sending it to California (free of charge) to have it examined for Enterovirus. I forget the name of the doc there who is doing this.
The costs so far: $3000 : fee for Dr. Hyde for 18 months.
$1000 : fee for Cornell University
$35 : for 1 of the blood tests.
Everything else is covered by OHIP for us lucky Ontario residents. I can't imagine the cost for people who have to pay for all the above tests. For any of you reading this who don't live in Ontario I have no idea how Dr Hyde does things. I'll ask next time I see him.
Regarding the Cornell Test: this is new for Dr. Hyde. He has arranged for 3 of his patients to have this done and he is going with us to observe and learn what is involved. It is being done by Dr. Betsy Keller who is now researching CFS and PEM. She gave a talk at the CFS conference here in Ottawa last September. She is following the Pacific Fatigue Labs protocol and has found that people with CFS have measurable PEM. It proves beyond a doubt that there is a physiological reason behind PEM and it is not that cfs'ers are lazy and don't like to exercise. When I saw her speak last September I knew I wanted to do this so when Dr. Hyde asked if I would be interested to go down with him I was very eager, regardless of the cost. I have this done May 10th and 11th. He is also going to be speaking at Cornell while there.
Regarding the actual visits with Dr. Hyde: His office is in his home in a lovely neighbourhood in Ottawa. I thoroughly enjoy seeing him although you have to have patience. He readily admits he is one of the slowest doctors around. My first 2 visits were each 4 hours long and the 3rd visit, 2 hours long. He is a fascinating man and has many stories to tell so you have to be careful about asking him questions since it might involve a lengthy, albeit interesting , story. His office assistant Melena is wonderful as is his wife and previous office help.They all appear to thoroughly enjoy what they are doing and each other. I bring a magazine in with me so when he is looking things up in the computer, filling in my results or phoning to book appointments etc. I relax and read while drinking tea and eating cake that he has served. He has a dog that comes in and out to check things out. It is a perfect mix of a professional medical office and a home of a friend.
As to what I am getting out of this? So far, getting lots of diseases ruled out, more than just the common things that can cause chronic fatigue. I have gotten a huge amount done in the first month and he says this will be at least a 6 month journey, possibly more. If he comes the conclusion that I truly have real ME then at least I'll not wonder any more if I have something else. Plus when there is some treatment for it I will be ready for it and can perhaps participate in any trials. Dr. Hyde will have a list of patients to supply any drug company or researcher who is looking for "true" ME patients.
Hope this answers a lot of your questions. Fire way if you have any more. Once I am back from Ithaca I'll start a new thread reporting on the experience. I see that J. Spotilla (might have name a bit wrong) has a blog about this. She (he?) went this month.
Gamboa
- Messages
- 6
- Location
- Toronto, ON
Thank you to those that have posted information about Dr. Hyde. I am very interested in bringing my husband to see Dr. Hyde.
I was wondering if there were any others out there that have been to see him and what the overall diagnoses was? I am simply wondering how helpful you believe the testing and diagnoses was and if you believe the $3000 was well spent. Thank you kindly.
I was wondering if there were any others out there that have been to see him and what the overall diagnoses was? I am simply wondering how helpful you believe the testing and diagnoses was and if you believe the $3000 was well spent. Thank you kindly.
Hi Lisa,
I have had only 3 visits with Dr. Hyde so far and we are, according to him, just at the beginning. He expects to see me for the next year, at least, in which he hopes to identify every abnormality I have. Whether I have what he believes is real ME or not will most likely take quite a while and a lot more tests.
Regarding the $3000: this covers many visits with Dr. Hyde, potentially for the next 12 to 18 months. It works out to be cheaper per hour than going to a naturopath, chiropractor etc. It is also easy for me to visit him since I live in the same city as him. I might not be so keen if I had to travel for every visit.
Gamboa
I must make a correction to my post of April 28 (not sure how to edit it with this new format). Dr. Betsy Keller works at Ithaca College in Ithaca, not at Cornell University (both are in Ithaca).
For my testing Dr. Maureen Hanson from Cornell University was present. She is a molecular biologist who is (or was) working on XMRV in CFS patients. I'm not sure what she is working on now but blood was taken from me before and after each day of testing so some of it might be going to her.
There were a few other observers for my first day of testing but I'm not sure who they were. I was too busy trying to ride a bike while hooked up to electrodes and breathing through a snorkel!
Gamboa
For my testing Dr. Maureen Hanson from Cornell University was present. She is a molecular biologist who is (or was) working on XMRV in CFS patients. I'm not sure what she is working on now but blood was taken from me before and after each day of testing so some of it might be going to her.
There were a few other observers for my first day of testing but I'm not sure who they were. I was too busy trying to ride a bike while hooked up to electrodes and breathing through a snorkel!
Gamboa
- Messages
- 3
I had 2 of the series of 3 hepatitis b vaccines in 1994. I ended up in the hospital after the first vaccine, doc said it definitely wasnt from the vaccine, if he would have just called the lab where i had it, or the drug company, smith-kline beecham, or checked the physicians desk reference he would have realized that i was having a bad reaction to the vaccine. my whole left side went numb, lost vision in left eye, slurred speech, i was put in the hospital, they checked for stroke and ms, both negative. I did have a very high anti ana level, vascultis, and guilliane barre syndrome, menstrual cycle stopped. 2nd vaccine, anaphlyaxis, and a host of other problems, doctors in my small town of Lancaster PA, closed ranks because they knew that the first vaccine should have been a malpractice suit, and the 2nd vaccine malpractice with my dr and the nurse who gave me the 2nd shot, since she asked if i had been sick the month since my 1st vaccine, i told her yes, but she gave me the vaccine anyway. Long story short, couldnt find a doctor that would say it was from the vaccine except the doctor whos office i got it at. spent 3 years in bed, had to learn to read, write, speak sentences, etc again, had to have a complete hysterectomy due to the interference of the vaccine with my menstrual cycle, was on prednisone and antibiotics for years, put on 150 lbs, got cushings syndrome from the prednisone and also diabetes. My lawyer finally found doctor hyde through another doctor in boston, in the meantime i had to move to california to live by the ocean and its temperate climate to help my lungs which were greatly affected by the guilliane barre and then the asthma that i got from the vaccine. Doc Hyde was in Australia giving a lecture, when he was flying back to Ottawa, he stopped over in california and came to my house to see me, was there for a few hours, then said i will never be able to work again, had me get a spect scan at UCLA and PET scan at UC Irvine. Had to fly up to Berkeley to be tested by a Neuropsychologist, and my son and i flew to montreal for tests at hotel dieu, then on to ottawa to see dr hyde and another doctor. I found him to be nice at times and other times very impatient, he loved to talk about himself, he was his favorite person. On to court. My lawyer and doctor hyde decided to go for the Vaccine Injury Program started in 1986 by the US government, pushed upon them by the pharmaceutical companies, because they said they wouldnt make anymore vaccines because of lawsuits, so they told the government to set up this supposed unbiased vip (Vaccine Injury Program), to help folks with injuries do to vaccines, that is a bunch of bunk, they were also on the side of the pharmaceutical companies. My lawyer and Dr Hyde could have gone the malpractice route and product liability route, but they knew, unbeknownst to me, that even if we lost the case with the VIP, they would still get paid. So 12 hours of testifying, then listening to Dr Hyde talk about himself, we left Washington DC, i was in tears and had to spend the week in bed, because of being there so long. I get sick all of the time since the vaccine. Turns out I lost the VIP case, but oddly enough a few months later, a check came in the mail from the VIP, for 200,000 made out to me. I called my lawyer and he said that was for him and Dr Hyde, so im disabled for life, the two of them take the guaranteed money road for them, 60.000. US dollars went to Dr Hyde and 140,000. US went to my lawyer, and here i sit on Social Security Disability making less than 1000.00 a month. So fair warning to everyone who thinks that Dr Hyde is a saint, he isnt, he may have started doing research with good intentions, but then turned to the money side of things, at us injured folks cost. Would I recommend him, not on yours or my life! PS sorry about the typing errors, i still have a hard time doing things with the severe brain damage i have from the vaccine. I wish you all that are suffering the best and look for another doctor who isnt in it just for the money!
Wow!
That's terrible. I hate to admit this but I am beginning to see the light and my good feelings about Dr. H. are beginning to fade. I am almost too scared to put this into writing in case he sues me but I can see that he is not all he appears to be. I was actually warned privately about him when I started this thread but now feel perhaps I should let it be known that there are past patients who are not pleased with him. I am, however, in contact with someone who is presently seeing him who thinks he is great and has helped them a lot. So some people love him, some hate him. I'm in between.
I agree that one of his favorite topics is himself. He also admits that he is eccentric and different than other people, which is certainly true. He is also a bit of a story teller and I think fabricates a lot of things. I can see how his reputation in Ottawa as a "quack" has come about and I don't admit to many people in the medical community in which I used to work that I see him. I also have noticed that the doctors he referred me to are all his age and all his friends. I have not been referred to an infectious disease physician, despite having reactivated EBV, and I now suspect it is because he has no friends in that field in Ottawa.
He is also not affiliated with any research facility or university and is not up on current research.
I haven't updated my visit reports for a while. I'll do that soon. I think I am at the end of seeing Dr. Hyde. I cancelled my last visit with him in November since I didn't feel there was anything more to discuss at the time and wasn't in the mood to sit and watch him type and make phone calls for an hour.
I don't regret seeing Dr. H. since he has ruled out a lot of things and uncovered some other issues not relevant to my CFS ( such as gallstones) and I have enjoyed for the most part my time spent with him.
Gamboa
That's terrible. I hate to admit this but I am beginning to see the light and my good feelings about Dr. H. are beginning to fade. I am almost too scared to put this into writing in case he sues me but I can see that he is not all he appears to be. I was actually warned privately about him when I started this thread but now feel perhaps I should let it be known that there are past patients who are not pleased with him. I am, however, in contact with someone who is presently seeing him who thinks he is great and has helped them a lot. So some people love him, some hate him. I'm in between.
I agree that one of his favorite topics is himself. He also admits that he is eccentric and different than other people, which is certainly true. He is also a bit of a story teller and I think fabricates a lot of things. I can see how his reputation in Ottawa as a "quack" has come about and I don't admit to many people in the medical community in which I used to work that I see him. I also have noticed that the doctors he referred me to are all his age and all his friends. I have not been referred to an infectious disease physician, despite having reactivated EBV, and I now suspect it is because he has no friends in that field in Ottawa.
He is also not affiliated with any research facility or university and is not up on current research.
I haven't updated my visit reports for a while. I'll do that soon. I think I am at the end of seeing Dr. Hyde. I cancelled my last visit with him in November since I didn't feel there was anything more to discuss at the time and wasn't in the mood to sit and watch him type and make phone calls for an hour.
I don't regret seeing Dr. H. since he has ruled out a lot of things and uncovered some other issues not relevant to my CFS ( such as gallstones) and I have enjoyed for the most part my time spent with him.
Gamboa
Daffodil
Senior Member
- Messages
- 5,875
does dr. hyde ever treat the disease or just help people get tests and disability??
Testing only. And primarily testing looking for a misdiagnosis.
I don't want to post any details about Dr. Hyde here, but the synopsis I've gathered from people is that he is great if you may not have ME and want every test conventional medicine has to offer that might find the real problem. ...Not worth the money if you actually have ME.
I don't want to post any details about Dr. Hyde here, but the synopsis I've gathered from people is that he is great if you may not have ME and want every test conventional medicine has to offer that might find the real problem. ...Not worth the money if you actually have ME.
That's really bizarre that he doesn't treat ME. Jodi Bassett (sp) has raved for years that he's the 'only' expert worth considering, but as Charlie says above, it seems like all he does is rule out everything else, and from what others have written it does indeed sound like he's not up to speed on the newer findings and research.
And Nancy's story should be read by everyone on this forum -- very sorry to hear what you went through Nancy, but so glad you posted about it, to warn others.
And Nancy's story should be read by everyone on this forum -- very sorry to hear what you went through Nancy, but so glad you posted about it, to warn others.
Exactly!
He is ONLY ruling out other illnesses. This is a good thing, of course, if you feel you haven't had a good work-up by your own doctors or if you are like me and really want to make absolutely sure nothing was missed. I also happen to live in Ottawa so it was easy and cheaper for me to visit Dr. Hyde. It would have been a different story if I had had to travel and/or if I had had to pay for all the testing done. As I live in Ontario, it was all covered by the Ontario provincial health plan, OHIP. I feel a bit bad for using up tax payers dollars on tests that were most likely unnecessary but at least now I have peace of mind knowing I don't have some rare, undiagnosed illness.Or worse, some common, treatable illness that was missed.
Regarding treatment, Dr. Hyde offers nothing....and I really do mean nothing. He is against medications and doesn't really like that I am now on Klonazapam despite the fact that I think it is helping me. He doesn't know much about nutritional things such as gluten sensitivity and food problems. When I mentioned I had tested positive ( by my GP!) for anti-gliaden antibodies and was now not eating gluten he shrugged it off as nothing and still offered me cake. Regarding Rich Vanks protocols etc. he was also in the dark. I have found that I know more about what is going on with new research into immunology, genetics and biochemical defects than he does (thanks to PR).
I'm sorry to have to report this after being so thrilled at the start of my visits. My next steps will be 23andme and a trip to Miami to see Dr. Klimas.
Gamboa
I was gonna say 'that takes the cake', but seriously, that is just sheer ignorance, and almost medical malpractice.
Sheesh.
SOC
Senior Member
- Messages
- 7,849
I think Dr Klimas is not taking new patients at this time, but you can still get an appt with someone else in her office -- Dr Rey, probably. I've heard new appts are now being scheduled for April/May, so you might want to call them ASAP to get an appt not too far out.
It's always good to know that you don't have something treatable that was missed by your GP. At least you can now focus on treating the ME/CFS. I'll be interested to hear if the Neuro-Immune Institute (Dr Klimas' group) turn up any common infections (in PWME) that Dr Hyde didn't (or didn't consider important), such as herpesviruses, parvo, coxsackie, etc.
Good luck!
"now not eating gluten ... he shrugged it off as nothing and still offered me cake"
Gamboa, I'm sorry but that's hilarious !!!
Thanks for posting - I needed a good laugh and you just made my day! so funny !! ..... but sad.
I will be cancelling my consultation visit with him since so much has been ruled out already. It would have been nice for him to test me for viruses through OHIP billing but that's too expensive a route to go when that's about all he's got left to check out. Unfortunately my GP won't order any blood tests for viruses etc. nor does she know anything about ME/CFS. She figures I have POTS and doesn't understand I'd still like to know if its been caused by or related to EBV (coldsores ruled my life from childhood to adulthood).
Gamboa, I'm sorry but that's hilarious !!!
Thanks for posting - I needed a good laugh and you just made my day! so funny !! ..... but sad.
I will be cancelling my consultation visit with him since so much has been ruled out already. It would have been nice for him to test me for viruses through OHIP billing but that's too expensive a route to go when that's about all he's got left to check out. Unfortunately my GP won't order any blood tests for viruses etc. nor does she know anything about ME/CFS. She figures I have POTS and doesn't understand I'd still like to know if its been caused by or related to EBV (coldsores ruled my life from childhood to adulthood).