“Lyme : quand la maladie nous mord”, a Lyme disease documentary

In the first half of 2016, director Charles Domingue and I conducted many interviews with those afflicted by Lyme disease in Quebec, some of the doctors who treat them, scientists, as well as the very doctors who claim to be unaware of the inadequate treatment of the illness in Canada, and who deny the gravity of the more advanced forms of the disease and their devastating effects on the body. The following documentary is the result of our work (available only in French at the moment).


Unscientific persistent Lyme disease denialism, right here in Montréal

Following the terribly inaccurate opinion piece written about Lyme disease last weekend in the Montreal Gazette (on which I commented harshly), Jim Wilson of CanLyme wrote a rebuttal piece and asked for it to be printed. This is the response he got from The Gazette:

“(…) We do not plan to publish your oped piece.

While we strive for balance on our oped page on most issues, this is not
true concerning issues where the weight of scientific opinion is strongly
on one side. (…)”

winIt turns out the editorial page editor is sadly one who mistakes “scientific opinion” with “outdated totally unscientific (so pseudoscientific?) ramblings served to you by a shill with a medical degree”. This is exactly what is so dangerous about this situation: attention-seeking MDs come out and say outrageous false things and yet many see them as the side of “science”, and patients say the real things but are seen as nothing but “anecdotes” and our personal experience and knowledge isn’t valued at a penny (and you know, we’re all just unaware mysteriously sick people placebo-ing the hell out of our lives and stuff…). The facts are that patients have actually researched and read all the recent and relevant science (we want to get well!), we’ve shared our experience with dozens if not hundreds of other patients, those in the Lyme community agree on most points and we know far more on the matter than most conventional doctors, who have been programmed to just repeat the official medical lines and pass them off as their own educated opinion in such circumstances.

This is the world we live in, the fight and the struggle are very real…

Here is Jim Wilson’s excellent text, it’s worth a read.

Regarding the July 11th issue of the Montreal Gazette titled, “Lyme disease is very real, but it’s no epidemic” by Dr. Christopher Labos.  Some of the content is troubling and may cause your readers to lower their guard.

There is no evidence that 2 to 4 weeks of antibiotics is a cure for Lyme disease as indicated. In fact, several animal model studies support the opposite.  Lyme disease can persist as an active infection, even beyond 3 months of antibiotics.

The term Post Lyme Disease Syndrome is only a hypothesis. Why?  No one to date has been able to establish when it becomes “Post” Lyme Disease.

Dr. Labos indicates that because the infection cannot be found in the blood, it somehow indicates a lack of infection. In reality, it has been known for years that the organism disseminates quickly and easily out of the blood into other tissue.

Lyme Disease bacteria are showing up in the brain tissue of dementia patients in significant percentages along with other spirochaetal bacteria.  Lyme Disease is a spiral shaped bacteria called Borrelia, a spirochaete, and is a cousin of syphilis.  Lyme Disease is a borreliosis, caused by many genotypes of the bacteria, not only that which the too narrow Canadian tests detect.

Older clinical trials, which were referred to in Dr. Labos’ article, have long since been debated and shown to have serious design and methodology problems.  They should not be used to support any health care policy as they do not meet the quality requirements for strength of evidence. 

In testimony to federal government committees last year, Public Health Agency of Canada executives acknowledged that cases were seriously “under-diagnosed” in Canada, not “over-diagnosed” as Dr. Labos stated. Those senior executives are on record stating the 682 cases that were confirmed in 2013 are likely under-reported three fold, and that in 4.5 years from now we will have between 10 and 20 thousand cases per year. The United States, in 2013, upped their estimate from 30,000 to 300,000 cases per year, mostly in states that border Canada. Lyme Disease is pandemic and Canadians must arm themselves with knowledge of prevention.

Our ticks in Canada, especially in Quebec, come in on migratory birds such as your friendly robins, wrens finches, and sparrows in the tens of millions per season from the very highly endemic states below us.  Ticks carrying Lyme Disease are becoming established in regions throughout Canada randomly.

Tens of thousands of people have benefited from longer-term antibiotics.  Simply because mainstream medicine to date has refused to fund transparent clinical trials in collaboration with patient’s medical experts, it does not mean those tens of thousands of people’s stories are simply anecdotal. A few hundred people with a similar story could be anecdotal, tens of thousands of people are no longer anecdotal and aggressive study is required.  Taxpayers deserve better in Canada on the Lyme Disease research file.

The Canadian Lyme Disease Foundation through its Venture Grants program is funding research in Canada.  We are working in conjunction with the G. Magnotta Foundation for Vector Borne Diseases to establish a research program using today’s most sophisticated science and technology to study human tissue to identify Lyme Disease and other diseases in all forms of human tissue.

Knowledge leads to prevention, and we all have the right to make ‘informed consent’ decisions with our doctor derived from accurate information. A negative Canadian test for Lyme absolutely cannot confirm you do not have Lyme Disease and you may not be cured with 4 weeks of antibiotics. Lyme Disease remains a clinical diagnosis based upon symptoms and history.”

Fear of exercise and ME

Concerning this article: ME: fear of exercise exacerbates chronic fatigue syndrome, say researchers (and many others like it that have come out this week with titles such as “‘Fear of exercise’ is biggest barrier to chronic fatigue syndrome recovery” and “Key to warding off chronic fatigue syndrome identified”, which are straight up lies)

It’s incredible how disconnected medical research and its media reporting can be from the reality of sufferers. I was told 12 years ago that I have some sort of chronic fatigue (called myalgic encephalomyelitis now, ME, or ME/CFS for chronic fatigue syndrome), and I know now that my Lyme infections are at the root of it all. Many ME sufferers do not yet know why they are ill, but that does not make their illness any less real or completely debilitating (and it is very likely caused by some bacteria, viruses, parasites, gut issues, environmental and chemical sensitivities, etc., etc.). I follow many people who suffer from ME on social media and I see the pain that this kind of irresponsible reporting causes. It also encourages even less understanding and compassion from doctors and society towards those who already suffer so much physical and mental strain from their illness. This is the first paragraph of the article:

“People suffering from ME should get out of bed and exercise if they want to alleviate their condition, a major study by King’s College has found.”

Are you fucking serious? If you’ve followed me here for a while, I do hope that my story allows you to see and understand how offensive, hurtful and simply ridiculous that statement is. Appropriate exercise is very important and should be encouraged, of course, but ME is no joke and when you can’t, you CAN’T. It is maddening to be a slave to your ill body like that and fear of exercise has nothing to do with not being able to get out of bed.

It should be no surprise, I guess, that “when asked whether the illness was purely psychological, Professor Chalder (of Kings College) said: “I think everything is in the brain. Some people are going to say that, but we know that beliefs are incredibly powerful as are behaviours irrespective of the nature of the illness”.”

I agree beliefs are a huge part of the healing process, but would you approach a cancer patient and tell him that his fear of nutrition is the biggest obstacle in the fight to reduce his malignant tumour, when his body just doesn’t tolerate any food intake? I spent over 10 years working on my beliefs, behaviours, and on trying my best to exercise despite my very painful and exhausted body, and if I attempt to see any sort of correlation there, it’s that all my efforts have actually been inversely proportional to me getting better… but then I know that’s not how life or science works.