Comments on: Why Lyme disease can be so hard to diagnose and treat

By: Jennifer Diana Kravis

Jennifer Diana Kravis — Fri, 10 Jun 2016 16:04:00 +0000

thank you Sunnybrook for communicating more up to date information that we usually see on Lyme Disease. I suffered 6 years before being properly diagnosed and treated, and suffer permanent disability. My 12 year old daughter also has Lyme, as well as my niece and my dog. Disease carrying ticks are spreading very quickly.

By: Paul Taylor

Paul Taylor — Fri, 03 Jun 2016 18:20:00 +0000

In reply to Kathy Harris.

I am sorry I can’t provide you with exact answers to your question. As I am sure you are aware, there is a great deal of debate about how best to diagnose and treat this condition. I would be misleading you if i left the impression that I know better than others. So, overall, I attempted to explain what is being done to settle these issues in Canada. And, hopefully, the federal framework on Lyme disease with provide the clarity you are seeking. A report is expected to be delivered to Parliament within a year. In regards to Sunnybrook – Sunnybrook provides specialized care for a number of different medical conditions – but Lyme disease isn’t one of them. You may want to talk to your primary health care provider for guidance.

By: Kathy Harris

Kathy Harris — Thu, 02 Jun 2016 21:00:00 +0000

Thank you for this timely article on Lyme Disease. However I don’t think the original question was adequately addressed. That is – What should a person do who
1) HAS been positively diagnosed with Lyme Disease and who
2) HAS received antibiotic treatment – the treatment protocol of a few weeks as deemed appropriate by the CDC –
when symptoms re-emerge or never completely go away???

How can we be sure that 2-3 weeks of antibiotic treatment effectively eradicates Lyme?
Are there accessible tests for other tick borne coinfections which might accompany Lyme here in Canada and may be causing these longer-lasting symptoms?
Is there an infectious diseases doctor at Sunnybrook who is accepting referrals from patients who have been diagnosed with Lyme here in Ontario?
Looking forward to hearing your answers.
Thanks Paul!

By: Cycle For Lyme

Cycle For Lyme — Wed, 01 Jun 2016 10:48:00 +0000

I was bitten by a tick in July of 1989 while in Lawrence, Massachusetts, for less than 24 hours. I was ignored and denied medical help by Ontario doctors for 19 years. It was not until 2008 that a Practitioner of Traditional Chinese Medicine, not an Ontario doctor, figured out it was Lyme. The Ministry of Health and Long-Term Care, the office Ontario Premier Kathleen Wynne, and the College of Physicians and Surgeons of Ontario are all responsible for the fact that Lyme disease continues to be downplayed and ignored by so many Ontario doctors today. When presented with overwhelming evidence 7 years ago, had former Health Minister, Deb Matthews, done her job, thousands of Ontarians would not be chronically ill today. Too many Ontario doctors continue to bury their heads in the sand in order to prevent any disciplinary action from the College of Physicians and Surgeons. We suffer and die as a result an ignorant College. In 2016, the problem with Lyme disease continues to go straight to the office of Premier Kathleen Wynne.

By: Brianne Henry

Brianne Henry — Tue, 31 May 2016 23:41:00 +0000

In reply to Beverly McKee.

I’ve only heard positive stories of support, compassion and recovery from Dr. Krop. He should be applauded for his willingness to advocate for patients and for following the Hippocratic oath. It is despicable what he had to endure from the medical establishment and sad he is only one of many who are no longer practicing due to archaic, close-minded mentality.

It will be very interesting to see how things change in this country (and globally) with respect to education, testing, diagnosis and treatment. It can’t come soon enough.

By: Beverly McKee

Beverly McKee — Tue, 31 May 2016 06:21:00 +0000

I remember so many years ago when I was a patient, along with my daughters, of Dr. Jozef Krop in Mississauga–for years. The health I have today I can thank him for. He was diagnosing through USA testing and treating lymes disease with intravenous antibiotics. I was in the back room of his office receiving a different treatment but would listen to the lymes patients and what they had been through until they found Dr. Krop. This doctor was exceptional in medicine and with his patients. He wrote a book on lymes disease. Last year I loaned it to a girlfriend who has been suffering for years from chronic lymes disease. I watched as the College of Physicians and Surgeons would sue him over and over for unacceptable practices. So many of us had been 10-15 years with specialists with no results until we were introduced to Dr. Krop. Now I see ‘lymes disease’ education everywhere. Once again, the College of Physicians were wrong and were relentless, going after this man for his medical license. Finally Dr. Krop gave up his MD designation–a great loss to our country. All that mattered to Dr. Krop was that his patients continued to get well. It was sad to watch what that poor man experienced from some of his peers and the College while his patients supported him and other professionals supported him. Kudos to Dr. Krop for being a champion of change for so many years.

By: Dona Ashcroft

Dona Ashcroft — Mon, 30 May 2016 23:15:00 +0000

I also want to thank you for this article – from another “lymie” who went 5 years without diagnosis or treatment. After 5 years of being too sick to work, I was able to return after just over 1 year of treatment with abx (in the U.S.). Thanks again for writing this – we need hope that things are changing, and this is definitely hope worthy!

By: chikita

chikita — Mon, 30 May 2016 20:07:00 +0000

Thank you for the well written article. As someone who has been ill for the better part of almost 3 decades. Diagnosed with 23 illnesses, seen over 60 doctors with more than 55 symptoms…i only found out last year that I have ‘chronic’ lyme disease. My GP missed the telltale large EM rash on my legs which was dismissed as black fly bites in the 1980s as i believe many of us were. I have been diagnosed with everything from radiculopathy, to Bells palsy, Guillain Barre, pneumonia, thyroid cancer, relapsing paralysis , every form of arthritis you can have and now Lyme….I am eternally grateful to a wonderful Dr. at your hospital for picking up on this!!! It IS easy to catch, HARD to diagnose and NOT easy to treat….especially 3 decades later. More doctors need to be trained and trained properly, and the testing needs to be updated with the many strains of Borrelia and updated to include bands that have been removed for undisclosed reasons.

By: Kcurrier

Kcurrier — Mon, 30 May 2016 19:33:00 +0000

Thank you for a thoughtful and comprehensive article on the state of Lyme disease in Canada. The Federal conference inclusive of Lyme patients was a step in the right direction. Hopefully Canada will continue to appeal to international experts who are much farther ahead in terms of research, testing and more importantly…. that there is much more that we need to know to handle this epidemic in a timely and dignified way in Canada. Most notably.. Nobel prize for medicine..Dr Montagnier, from France, Dr. Zhang with John Hopkins and Dr. Eva Sapi from the University of New Haven all present more comprehensive views of persistent infections, immune dysregulation and the variety of coinfections commonly transmitted through to ticks that affect testing and treatment. I truly hope Sunnybrook does not follow the lead of the Complex Chronic Disease Clinic in British Columbia. It is a disgrace to the needs of Lyme patients and has been nothing more than a Public Relations tactic following the forced release of the BC Health Authority Schmidt report. Patients deserve more comprehensive testing, treatments and financial support as they navigate this terrible disease. Paul Taylor is commended for continuing the respectful and needed dialogue on Lyme disease in Canada.

By: Sunnybrook

Sunnybrook — Mon, 30 May 2016 17:43:00 +0000

In reply to Sharitor. Thanks for reading! We're sending you our well-wishes :)