Canadian Lyme Letters Campaign

There are presently several initiatives ongoing in Canada with regard to Lyme disease. One of these is a Lyme Letters Campaign – http://lymehope.weebly.com/lyme-letters-canada.html.

In response to this campaign, I prepared a letter to the federal Minister of Health and copied it to our provincial Minister of Health.

It went as follows:

“Dear Minister Philpott,

Re: Tick Borne Diseases in Canada

I am writing you today with the hope you read this letter, as well as others you may receive on this topic, in its entirety. The prevalence and increase in tick borne diseases is a national issue as they are affecting thousands of Canadians from coast to coast. This issue deserves your review and attention as our medical system is failing us.

I am a 55 year old, married mother of two teenagers. I had a successful 20 year career in Municipal Government. I left the workforce in 2000 after the birth of my first child with the intent to return to the workforce once my children were out of elementary school; however, I have been unable to return to work due to ill health. In 2011, after many years and much suffering, I was clinically diagnosed with tick borne diseases.

My story is similar to many others. I had numerous health issues over a number of years which were never adequately diagnosed. Numerous times I was told that I was just getting older and to get use to the changes. My female GP, who I was going to since I was about 19, looked at each symptom individually. I would occasionally be sent to specialists to try to find out what was going on with the majority of tests coming back negative and with no clear diagnosis. At no time did my GP, or any of the specialists, say that all my symptoms could be the result of one illness. This is a common thread among those that suffer with tick borne illnesses.

We have an issue in Canada that will only continue to grow and impact the health and well-being of numerous Canadians and will also impact the financial stability of the country. Our neighbours to the south are seeing a dramatic rise in the number of people who have been diagnosed and it is suspected that the numbers diagnosed, as is probably the case here in Canada as well, are a small percentage of those who are actually infected. Disease carrying ticks have been spreading from the US northward throughout Canada at a swift rate, yet doctors, health officials, and residents remain uneducated and ill-informed of the potential threat and the possible symptoms.

Those that are affected recognize that health care is a provincial matter; however, more needs to be done federally on this issue. Universities should be mandated to include tick borne diseases as part of their medical training; testing labs need to be properly regulated so that the testing is accurate and timely; treatments need to be developed that adequately treat until cured; the Colleges of Physicians and Surgeons need to be held accountable for their members; and those that are suffering need hope and assistance to protect them from the insurers who won’t cover their disabilities, from Doctors who won’t treat, and from the financial distress as they seek relief and cure from afar.

Considerable research is required on tick borne diseases and this research should be spearheaded federally rather than each province having to do their own with limited research dollars. We should be working together as a country to ensure that our medical practitioners are knowledgeable, that a quick and proper diagnosis can be made at all stages of Lyme and other tick borne diseases, and that prompt and adequate treatment can be received.

In many instances, the various provincial Colleges of Physicians and Surgeons are hindering the clinical diagnosis of tick borne diseases by doctors. Health Canada has advised that Lyme is supposed to be a clinical diagnosis but most, if not all, Infectious Disease doctors in Canada, and many, if not all, Colleges of Physicians and Surgeons, require that a diagnosis be science-based, relying on the faulty ELISA/Western Blot testing for a definitive diagnosis. Science is lagging on this issue and the current testing and methodology of diagnosis is resulting in mis-diagnosis or in many cases, no diagnosis.

As an example, when my ELISA came back negative, my GP told me that if I believed I had Lyme or another tick borne disease, I would have to go to a reputable place in the US, like the Mayo Clinic, and if I was diagnosed there then, and only then, would she be able to treat me. Without a positive ELISA, she indicated that her license would be in jeopardy if she treated me, even though Health Canada clearly advises that this diagnosis should be clinical.

After my ELISA came back negative, I took the initiative to undertake my own research. I found a national organization – CanLyme – who directed me to a local doctor who was dealing with Lyme in my province of Nova Scotia. The doctor was the only doctor in Nova Scotia that had taken an interest in Lyme. I was clinically diagnosed by him in 2011 and was able to receive treatment until he closed his practice in 2013. The closure was as a direct result of being investigated and harassed by the N.S. College of Physicians and Surgeons. My diagnosis was based upon a comprehensive diagnostic form that reviewed all my symptoms (48 at that time). Up until that point, none of the doctors that I had been seeing over the years looked at all my symptoms at once, rather each looked at an individual symptom based on their speciality.

There are many people in this country dealing with tick borne diseases that are struggling to identify what is affecting them! They do not know where to turn and their doctors are simply advising them that it’s ‘all in their head’ or that each of their symptoms have a different cause (age, sex – peri-menopause/menopause, weight, thyroid, etc.) and prescribe to alleviate symptoms rather than identify the root cause and treat accordingly.

There are many people dealing with tick borne diseases that are paying out of pocket for holistic, homeopathic, or out of country treatment. This cost can be considerable if the bacteria is not caught and treated early it can end up affecting all systems. Some people could also be susceptible to fraudulent treatment as a result of desperation to seek relief/cure.

There are other factors that are of concern. It is considerably harder to eradicate tick borne diseases the longer that one has been infected as the bacteria affects multiple organs and symptoms, yet some practitioners believe that the treatment is the same whether you were bitten on the day treatment started or whether you were bitten days, months, or even years before. In addition, ticks can carry multiple types of bacteria and infections, not all of which respond to the same treatment or present with the same symptoms.

I was fortunate to have been able to attend the Federal Framework on Lyme Disease Conference in Ottawa. I, like many that attended, had high hopes that this discussion would result in changes in how Lyme and tick borne diseases are treated in this country. We were asked our opinions on things that could change immediately and things that could occur over the long haul. To date, I do not believe anything has materially changed as a result of this conference, even though a considerable number of good suggestions were given by many in attendance.

While those of us dealing with tick borne diseases wait for improvements to be made, more and more people are becoming ill. The cost to this country will continue to climb as a result of people being sent to specialists, given numerous tests and follow-ups, all while their health deteriorates to a point where they can’t attend school, can’t work, can’t take care of their families, and can’t take care of themselves.

People are losing their homes! They are losing their families! They are losing their minds! Some are even losing their lives!

Minister Philpott, health care may be a provincial responsibility; however, this is a Canada-wide issue and the federal government needs to take a leadership role, similar to that which occurs for many health issues affecting our country. While we appreciate Health Canada’s acknowledgement that Lyme and other tick borne diseases should be a clinical diagnosis, this message is not reaching the medical practitioners and is counter to what the Provinces are dictating to those on the ground. As the Minister of Health I, and all those that are affected, ask you to be a leader in this issue, meet with those knowledgeable and, more importantly, current on tick borne diseases, meet with those that are affected and the associations that have developed as a result of frustration by those affected, meet with your provincial counterparts, and deal with this issue before it reaches pandemic proportions.

I have considerable information on this matter and would be pleased to meet with you or your designate to discuss this at your earliest possible convenience.

I, and the thousands of Canadians affected, thank you for your time and look forward to your leadership on this matter.”

We need as many letters to the Minister as possible. A draft of the Federal Framework on Lyme came out on March 7th. It is useless! It basically just reiterates what needs to be looked at further. There is no action plan and no definitive changes are acknowledged. Although the draft is open for comments until March 8th, it is not felt, by those in the Lyme community, that much change will result.

All Canadians, whether personally dealing with Lyme, or not, need to seriously look at this issue and consider being involved in the various Lyme initiatives as it has been said that by 2020, 80% of Canadians will be living in Lyme endemic areas. It’s time for action! It’s time for change! It’s time to be VOCAL!

 

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