Researcher John Scott responds to The Nature of Things CBC TV episode on Lyme disease
xxxxxxxxxx
xxxxx, Ontario
Sue Dando
Executive Producer
Science and Natural History Unit
CBC-TV Documentary
Canadian Broadcasting Corporation
P.O. Box 500, Station A
Toronto, Ontario M5W 1E6
15 October 2013
Dear Ms. Dando:
Re: The Nature of Things with Dr. David Suzuki
Ticked-off: The Mystery of Lyme Disease, 10 October 2013
Although your program on ticks and Lyme disease covered both sides of the chronic Lyme disease debate, it left the viewing audience in a flurry of confusion. What are viewers going to believe, and who are they going to believe. Many statements made by professional interviewees were a cascade of dogmatic myths and misguided speculations. With the exception of Drs. Barthold, Donta, Foley, Harris, Murakami, and Patrick, the medical/scientific information was slanted, warped, or flawed. In the end, the program leaves viewers in a quandary. Unfortunately, patients with persistent Lyme disease lose in the fight to get diagnosed and treated.
Comments like: “ticks will soon occupy the neighbourhoods where people live,” and “full-scale invasion,” and “Lyme disease is growing at an alarming rate,” are pure sensationalism.
As well, the programme was full of unscientific and faulty information. For example, Dr. Virginie Millien, McGill University, stated that the winters were too cold for the ticks [blacklegged ticks, Ixodes scapularis] to overwinter. In reality, in the fall, I. scapularis, which have antifreeze-like compounds in their bodies, descend into the moist, leaf litter and humus layer on the forest floor, and are cozy under an insulating blanket of snow. Climate change is not a factor in overwinter survival. Researchers (Millien, Ogden, Leighton) overlooked the fact that deer mice, Peromyscus maniculatus, which act as reservoir-competent host for the Lyme disease spirochete, Borrelia burgdorferi, are indigenous across Canada. Therefore, why would any zoologist study the movement of the white-footed mouse, Peromycus leucopus, when we already have deer mice that are competent reservoirs for B. burgdorferi? It makes no practical sense.
Contrary to what was stated by the commenter, ticks do not get B. burgdorferi from squirrels because they are not a reservoir-competent host.
One segment of the video mentioned that ticks collected from songbirds at the McGill Bird Observatory were sent for testing of B. burgdorferi. And yet, no credits were given as to where they were sent for testing, nor did it provide where the relevant results (Scott et al. 2012) were published. This is my research, and it was overlooked. Songbirds widely disperse Lyme disease vector ticks, and people do not have to go to an endemic area to contract Lyme disease (Scott et al. 2012). Migratory songbirds have been bringing Lyme vector ticks into to Canada for millennia. The border has been meaningless to passerine migrants.
The commenter mentioned that in 2002 tick populations started to increase in various provinces. This statement is false. Previously, Dr. Satyendra Banerjee found 20 endemic areas in British Columbia in 1993, and they were officially announced on 14 July 1993 (Banerjee et al. 1994).
Your program made a fervent effort to examine both sides of the debate on chronic Lyme disease; however, it completely overlooked our research on ticks and Lyme disease. To date, we have published 14 peer-reviewed scientific articles. The last article (Scott et al. 2012), which I have enclosed, was cited by BioMedLib, as the most cited in its domain (ticks, Lyme disease, mammalian, avian, hosts, Borrelia burgdorferi) for one full year after publication. I am wondering why our bird-tick-Borrelia research was overlooked.
Tick drags (right on the ground), which were shown several times during the program, are a poor way to collect blacklegged ticks. For immatures (larvae, nymphs), live-trapping is the best method, whereas flagging (brushing low-level vegetation) is superior for adults; note scientific literature. Importantly, the people doing the dragging were inadequately dressed for the job. What happens when a stick tears or pokes a hole in a sock while dragging? Socks have a great tendency to come down unless they are taped up.
Dr. Nick Ogden and Patrick Leighton vouched warmer climate is increasing the number of ticks [blacklegged ticks]. Any research to this effect is inconclusive. In fact, the blacklegged ticks were barely studied before 2002, so how could anyone know whether there has been an increase, or whether they were just ignored and overlooked by Canadian federal and provincial researchers who did not want to draw attention to the problem. I remember in 1992 that one federal researcher told me that he would not know what to do if the blacklegged ticks crossed the border! Actually, they were first documented in Canada at Bracebridge, Ontario in 1904.
Dr. Robbin Lindsay can’t believe the change in the increase of tick populations in Canada. He stated that songbirds bring 50-175 ticks into Canada annually, but says that he has no idea what is causing the increase of ticks and Lyme disease in Canada. Admittedly, he has been studying ticks since 1989, so he should have an explanation. Perhaps he spent too much time at Long Point, and ignored the rest of Canada.
Dr. Gary Wormser states that chronic Lyme disease does not exist. Having him on the video was a great disservice to Lyme disease patients. Each patient must be assessed clinically on an individual basis. Now, more and more patients will have to go stateside for diagnosis and treatment. I have a list of 300 peer-reviewed scientific/medical articles showing the persistence of B. burgdorferi after standard (2-4 weeks) treatment with antibiotics. Dr. Wormser’s comments are highly flawed and, in fact, they are lies—all to cover up his conflict of interests and personal biases. Frankly, he has no regard for patients of this insidious, debilitating disease. His statement: “my heart goes out to them [patients]” is a despicable joke!
Overall, your program was overloaded by too much information from government officials. Frankly, they don’t care about the plight of patients. I quote Upton Sinclair:
“It is difficult to get a man to understand something when his salary depends on him not knowing it.”
Your program overlooked one very important point: B. burgdorferi has pleomorphic forms. These diverse forms explain why patients have persistent Lyme disease. In addition, the dormant cysts and motile spirochetes form biofilm colonies that are even more difficult to treat. Additionally, B. burgdorferi sequesters and hides in immune-privileged sites; namely, ligaments, tendons, brain, eyes, and bone. These sites are very hard to penetrate with current antibiotics, especially in older patients. As Lyme disease progresses in the body, the immune system modulates and, over time, is suppressed, and fewer antibodies are produced. This downward pattern of the immunological response has been charted in dogs with Lyme disease.
Dr. Robbin Lindsay mentioned that the current serology test in Canada is the best that we have. This is not true. Dr. Eva Sapi, University of Connecticut, and Advanced Laboratory Services, in Pennsylvania, provide evidence that culture of B. burgdorferi from blood is superior. At Advanced Laboratory Services, B. burgdorferi can be cultured from the blood of immuno-compromised Lyme disease patients, which normally exhibit seronegativity. Serology test kits, which are manufactured in the U.S.A., do not reflect the wide diversity of B. burgdorferi genotypes across North America. Worldwide, there are over 100 genotypes of B. burgdorferi, and only 1-3 are currently represented in 2-tiered Canadian serology tests. Songbirds can bring diverse B. burgdorferi variants to Canadian from as far south as the northern part of South America. Furthermore, people have global travel, and acquire these variants. Also, variant strains could be brought into Canada by songbirds during northward spring migration, or by mammalian hosts, including travellers. Notably, researchers (Clark et al. 2013) in Florida provided evidence of B. andersonii and B. americana in Lyme disease patients. These Borrelia genotypes are pathogenic, and not detected by the 2-tier serology test. Dr. Lindsay completely overlooked what is happening south of the border when it comes to Lyme disease serology testing, and the importance of recognizing these diverse B. burgdorferi genotypes in assessing Lyme infections.
One thing is certain: the medical profession in Canada is woefully ignorant about Lyme disease. When Lyme disease is mentioned to them, they promptly withdraw, are mute, and move on to another topic. Fortunately, your video makes this point.
The comments that an increase in tick numbers is “spurred on by climate change” is strictly bias; this point is clearly unfounded. As well, the statement that 80% of the population will live near an endemic area by 2020, is pure speculation—unfounded hype, and unsubstantiated by scientific proof. Not only are these points myopic, they are only a hypothesis.
In conclusion, your show creates awareness of Lyme disease across Canada, but leaves the audience in a state of confusion asking what is valid, and who is correct. The 1-hour program is slanted far too much towards government spokespeople, and does not get to the heart of how patients are going to get diagnosed and treated in Canada. The audience is left hanging.
Yours truly,
John D. Scott, M.Sc.
Research Scientist
Xc: Dr. David Suzuki
Enclosures: Article: Scott et al. 2012; Submission Release
A fine erudite critique. I live in the States and did not see the program. I was aware of it, and was hoping it would be well done for the benefit of victims of tick-borne illnesses, and the researchers and medical practitioners who serve humankind through science. At least Canadians got more on this terrible scourge than Americans did from15 minutes on a daytime talk show (Katie).
Thank you sir for all you do re: Lyme & co’s research!
Just wanted to let you know how much I … and I am sure … the rest of the Lyme community appreciate your point of view and honesty and the fact that you have taken the time for this.
I had actually been going over some of the concerns you mentioned in your letter here with a friend & had said how great it would be if someone in our country in the science field was able to stress reality on the subject … Hopefully, things will come together for proper testing & treatment here in Canada & the likes of Wormser will have some major consequences for all the lies and cover-ups that have caused so much pain in so many aspects. Thank you again and all the best !!
Although I do believe John Scott’s statements are true and should have recognized his research! Also these shows continually put guys like Wormser on who are to us in the Lyme world very obviously corrupt! The general public don’t understand what this guy has done to destroy people’s lives! He spews nothing but lies to save his own ass from his previous bias research in the past!
I also think that none of these shows tell the whole picture. They only focus on the very worst of the cases and totally forget about the people who are still sort of still functioning but having a very difficult time with their health issues due to Lyme Disease!
After saying by his and punching all the holes in this show I think it is still one of the best efforts that Canadian Media has put forth yet! Anyone who is navigating through this Lyme disease mess would agree! We know how long a typical appointment at A Lyme literate doctor can take each time! So doing a show and covering everything in an hour or less would be quite impossible! This topic would easily take several shows to tell the whole story.
Great job expert the obvious so maybe next show lets dig a little deeper and leave guys like Wormser out of this discussion lets have a truly different take next time!
Keith Poullos
GTA Lyme disease support group
Excellent response John. They may predict that by 2020 eighty percent of the north east will encounter ticks carrying lyme disease. I for one was bit in 1971 in Cape Breton, Nova Scotia and only diagnosed in February 2010. Four decades later and trying to blame it on global warming and warmer winters. What a joke. I would think that Nova Scotia for one is a province that is already overridden with it.
We are brought up to respect our elders. Those that are educated in the field of medicine under the oath ( Do No Harm) It seems that the media is as afraid to let the legal aspects of how the medical association and their peers, bind the hands of the very physicians that could very well help the thousands and thousands of people grossly suffering from this insidious disease.
It can only be , in the end, a matter of finances……
Our medical association must lift the protocol for diagnosing and treatment guidelines of lyme disease. Keeping in mind that Dr.Ernie Murakami ( the doctor that means it) ( Do No Harm) Saw a need and would not stop until…………………………………………………………….
Because of this man’s selflessness, many who had lyme or were misdiagnosed and treated improperly were treated and are back into the communities. I would challenge any of the scientific specialist to try to convince this man that there is no such thing.
I would have loved for there to be more air time for the ones that have been there and done something about it , than those that say, Nay( with no substantial evidence to back it up.
Lyme disease is growing and is being misdiagnosed. The medical association would rather send a lyme patient home to suffer quietly and just disappear, than stand tall and allow proven treatment to be given….Afterall, if these specialists have done their homework, they already know how destructive this disease is and are probably hopeful that if they wait long enough…most will not be able to voice their opinion…..six states in the U.S. have court orders demanding that the physicians NOT BE HARRASSED while treating lyme patients…IWhy does it take a court order ??????????? Who’s gaining from this secrecy?
I completely agree with this article. I had some of the same thoughts watching the documentary. I’m a Lyme sufferer and thought; wow, even I’m confused at who to believe!
Excellent, and Thank you John. When I had the audacity to make a few less than complimentary comments about the government bias I saw in Ticked Off, I was birated by more than one reply regarding what an great documentary it was. My opinion, when you cosy up to the government in order to get an interview, you get what is poltically correct, not what is the truth. Although getting the word out about Lyme will always be a terrific benefit, Ticked Off is a perfect example of what the government wants the public to hear – not what the public needs to know. The fact is, our governments, federal, provincial, and local have been dropping the ball with respect to Lyme and the thousands of Canadians that have been suffering its debilitating effects for decades.
Thank you John.
You Are really helping hundreds of thousands of people across the World….I can not say much more than that as I have Neuroborreliosis and my brain is very taxed…thank you .
I saw a clip of this show online before it aired and was hoping it would be balanced, fortunately or unfortuantely it was a beautiful evening at home so I was busy working outdoors and missed the show…John’s comments left me with no desire to watch it later…
Ironically the day I was diagnosed with Lyme clinically (EM and attached tick ~ July 2012), CBC had a radio noon phone-in discussing Chronic Lyme. The stories and emotions of the people who called in was overwhelming… and to top it off they were being shut out by the health care system. I believe that is the story Canadians need to hear.
I had urged everyone in my community here in the Ottawa Valley to watch the show because, since I started providing support to my Late-Lyme-stage daughter, I have had dozens of people tell me they were bit by a Lyme-tick. I am beginning to believe that it is an epidemic in this area. The general response from those who have been suffering through piece-meal treatment here in Eastern Ontario was that the show was inadequate, as Mr. Scott articulates so well. We need a new documentary that is thoroughly researched and based on science, not speculation.
The show tried to cover too much, yet covered not enough. Stretched too thin. Borrelia is a very complex disease both physiologically, and politically.
Patients lose their functioning lives, yet cannot be treated by their doctors. Why? Politics, egos, falsified and repressed research.
Money. Money for patents, money for vaccines. Money. Follow the money and find the pot of rotting, steaming corruption that has left patients suffering and doctors either ignorant or, if not ignorant, terrified.
It was a shock to see worms er on the show. Most viewers who have Lyme must have done what I did; shout out in dismay and with contemp for the man as he uttered outright lies.
I lived with this disease and co-infections for 26 years! It was infernal “at times”. I share the horror stories of most LD patients. I will spare the details but I am under continuous Lyme disease and co-infections protocols for the last 6 years. I am getting better. Getting to the deeply hidden bacteria is like peeling an onion in many many ways. I am very lucky to know what hit me, to be treated, to have the resources to get the appropriate ILADS treatment. I have been reading on the disease and co-infections for the last 8 years. I guess, I know now, more than all arrogant local infectious Drs that still denying and ridiculing all Lyme disease patients. What you say sir is right on the dot! What we need is to tear down the stubborn unscientific blockage of IDSA. We also Should publicly expose Health Canada, that is going through the motion only keeping stance with a proactive inertia.
And organised public funded research going to ILADS, now is a must, on protocols and how they works for us; a very complex matter .
That for we have a feeling, for most, we are more or less our own guinea-pigs .
Dr. Horowitz said it well last week at the International Lyme Conference. This movement is going to be huge!
http://www.youtube.com/watch?v=f5tFUh-tAt4#t=146
I was bit by a deer tick 3 years ago. Didn’t realize that what to look for and months later, I developed a small red mark on my leg, day 2 the red mark got a little larger (no pain or itching but warm to the touch) went to the doctor and was advised to take an antihistamine. This is after I told him I thought it could be from a tick. I didn’t get the antihistamine as it was not itchy. That night I woke up and could move my neck, went to the bathroom and to my horror saw silver fish bugs crawling all over our bathroom floor, went to call for my husband and realized that my jaw was locked up. Got him out of bed and into the bathroom and there were no sign of silver fish bugs (hallucinating) Once I got into the light, I had the EM rash on my leg. I could barely talk, head cocked sideways and off to the hospital we went.
The hospital is Kingston General (Kingston, ON) and a lot of doctors in training there due to Queens University. Once the Dr seen the rash, he asked me if he could show some doctors in training as this was a classic case of Lyme Disease. They then took my blood, gave me a prescription for antibiotics and sent me on my way.
I went to work the next day although could barely keep my eyes open. After the 4 weeks of antibiotics, I started to feel somewhat better. Didn’t go back for follow up bloodwork.
Here is where everything starts to fall apart:
****1 year after I slowly started developing depression (although I didn’t recognize that till almost a year after that. It was a slow progression till it came to the point just before last Christmas that I was crying non stop or angry at the world. Anyone who knows me, knows that I have always prided myself on my positivity and was a true believer that I could overcome anything.
****Shortly after my sad feelings started, I got severe pain in my elbow. That lasted for about 6 months then that stopped and my 1 knee started. I have always been active and work out 3 – 4 days per week. This would move from 1 knee to the other. The pain finally got so severe I went to the doctor. Was treated for my depression and MRI, xrays for my knees. That came back with nothing.
*****Sent for bloodwork and it came back that rheumatoids were high. A serology test came back negative for Lyme.
*****Sent to a Rheumatologist who laughed when I mentioned Lyme Disease since I was treated with antibiotics.
I am sooooo frustrated and in pain daily. Sometimes my knees even give out. The occasional days I may get some relief but can no longer exercise at all. I am on Effexor for the depression. Dr’s just want to blow you off when you mention that you honestly feel this is from the Lyme Disease. I never had a back pain, leg pain, I never even got headaches before I had this dam Lyme Disease.
I am begging someone to give me the name of a Doctor who will listen and try to help me as I can’t live the rest of my life like this. I am willing to go to the US if thats what I have to do. I just want all this dealt with so I can go back to being me.
My email address is trabar6@hotmail.com and would be so open to anyones suggestions.
I am beginning to think my CFS and aches and pain are caused by Lyme disease. I need a doctor who is specialist in this to help me heal. Been ill since the 70’s. Please help with a reputable doctor. Thanks.