Can’t say that it was easy. I’ve never been much of one for television exposure, especially now that I look like a beanstalk! Since I have been bedridden for 3 years now, I haven’t been able to stand in front of a full-length mirror and take it all in. Given how I looked on W5, I can’t say that I have been missing very much 😉

To be honest, I have mixed feelings about the show. I am sure that part of my reaction is coloured by the strong emotions which welled up in me as the full reality of my condition broke through the protective wall that I had gradually built up in order to cope with the disappointments, treatment failures, lack of a supervising lyme-literate doctor, and the slow progress with alternative methods.

Following is a slightly modified version of an email I sent to CTV to provide feedback on the show.

To CTV — Thank you for shedding some light on my case of lyme disease. Multiply my case times 10,000 and one probably gets the number of Canadians infected anew each year. The problem with lyme disease is that once one gets ill, one spends all of the time and energy scrambling to find a doctor, a cause, a positive test, a treatment, a cure, not to mention the need for cash to finance all of these “non-sanctioned” endeavours. Any “extra” time and energy is spent fighting doctors, insurance companies, public health policies, governments. There is nothing left over for mounting a P.R. campaign. The result is that myriads of people with lyme disease are too sick to properly advocate for themselves and publicize the risk far and wide. This coupled with extremely weak public health and medical prevention, recognition and treatment, means that Canadians are ripe for the picking (or biting…).

Having said all of this, CTV W5 has begun with the first step. I urge W5 (and CTV in general) to dig even deeper. There are many tens of thousands of Canadians who are experiencing a wide range of lyme symptoms. Many do not know what is going on, and their doctors are not usually much help. I got a facebook email today from a man who saw the W5 show, and searched for me on facebook. He sent a desperate plea for help. He heard his symptoms described during the show. So far, no one has been able to identify what is wrong with him, nor help him. Although I didn’t mention it during the interviews with Paula Todd, there are others in my extended family who are ill with lyme disease… And many other friends, acquaintances and friends of friends are waging the same war. We don’t show up in the statistics and we feel powerless to advocate for ourselves – every attempt to do so is blocked by political indifference, medical indifference, media confusion about an extremely complex and multi-system illness, etc…

So… digging deeper would mean news shows on specific topics such as

1. Testing (why have they abandoned our two-tier testing regimen in Europe where lyme is generally dealt with swiftly and competently? what is the true evidence for and against the two-tier system? how would the statistics be affected if we moved to a more enlightened and honest test for lyme disease?)
2. PHAC (public health agency of Canada) and their role in lyme policies across the nation
3. How provincial health ministries are dropping the ball and what needs to be done to pick it up and run with it.
4. More stories from Canadians. Some are as sick as I am (or worse), but MANY look OK on the outside, but are barely functional and often not able to work.
5. Doctors – afraid to diagnose, treat, even mention lyme disease to a patient. And some get extremely angry when lyme is mentioned, as if the greatest medical quackery that has ever existed is being proposed by the patient.
6. Colleges of Physicians and Surgeons – they are enforcing an orthodoxy that doesn’t make sense, that has been proven wrong, that is harming Canadians, and results in the few doctors who do try to help being persecuted, harassed and even facing suspension and license removal.
7. Insurance Companies. Right now there is an open season on Canadians with lyme disease. Insurance companies use the uncertainties and controversies (as well as Canada’s adoption of IDSA-style guidelines which do not recognize chronic lyme disease) to deny claims to continue with life insurance, get necessary medical equipment through extended health policies, deny claims for Long Term Disability, etc…). I myself am having significant trouble getting a hospital bed (I have been bedridden for over 3 years), my life insurer tried to terminate my life insurance policy due to my lyme diagnosis and long term disability status, and my LTD insurer tried to paint me as a psychiatric case to force me back to work even when I was clearly unable to.
8. Tick surveillance – Canada generally has passive surveillance for lyme-infected ticks. There is no PROACTIVE scientific method for identifying densities of lyme-infected tick populations. As a result, public health agencies and health ministries have only a general idea where the risks are currently highest. And what about other disease-carrying vectors? Current research is indicating that ticks may not be the only carrier of lyme borrelia and other major co-infections.
9. ?

There is so much more here. Thank you so much for a good beginning. CTV…Please don’t stop there.