The following guest blog is by Vanessa Colleran of True North AIP. Vanessa is a Canadian healing herself of Lyme Disease & two diagnosed autoimmune diseases, using the Autoimmune Protocol. She is also a certified Primal Blueprint Expert through Mark Sission of Mark's Daily Apple & is studying through the Canadian School of Natural Nutrition to become a Registered Holistic Nutritionist. You can find Vanessa here:
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In my previous post, Chronic Lyme Disease and the Autoimmune Protocol – Part One, I mentioned that Lyme is a controversial disease, especially in Canada, which often leaves more questions than answers. But why is Lyme Disease, especially Chronic Lyme, so controversial in Canada? And why are so many people going undiagnosed and untreated in a country whose health care system is supposed to one of the best in the world?
Here are some of the facts:
- Lyme Disease was first found in 1977 Old Lyme, Connecticut when a group of parents noticed arthritis like symptoms in their children and brought this to the attention of health officials.
- A majority of Lyme cases ended up being found in a number of eastern states in the U.S., but it wasn’t believed to be prevalent in many areas of Canada at the time (although Canada’s Public Health Agency didn’t start requiring the disease to be reported until 2009).
- People suspecting they had Lyme Disease in Canada were told it was impossible as the ticks that carry the disease weren’t endemic to many areas. In addition, there was a growing concern among doctors over misdiagnoses of this largely unknown disease and of course, the overuse of antibiotics (Lyme’s primary recommended treatment).
- Such things as a patients travel history weren’t regularly considered nor the possibility of the ticks themselves being able to travel and spread the disease.
- Reforestation and suburban expansion have helped to spread the disease opening up new habitats and allowing for deer and rodents that are carrying the infected ticks to move.
- Black legged ticks carrying the bacteria Borrelia burgdorferi and its common co infections such as Bartonella and/or Babesia, travel not only on the backs of deer and rodents, but also by some 3 million land birds and songbirds that migrate to Canada each year.
- Climate change is making things worse. Canadian authorities in 2014, admitted that Lyme Disease, the most common vector-borne disease in the U.S., is indeed an ‘emerging’ threat in Canada. The U.S. Environmental Protection Agency also added Lyme Disease to its list of “climate change indicators” – which is meant to help the public ascertain the documented effects of climate change.
This is where we stand today: Canada’s Public Health Authority now recognizes endemic populations of ticks that could carry the disease in six provinces in Canada: British Columbia, Manitoba, Ontario, Quebec, New Brunswick and Nova Scotia. Although Jim Wilson, president of the Canadian Lyme Disease Foundation (Can Lyme), believes that Lyme Disease is indeed present in most of Canada.
- There hasn’t been a reliable test used that directly tests for the presence of Borrelia burgdorferi, the bacteria responsible for the causing Lyme disease.
- What has been used as a screen in Canada, is a two tiered testing protocol (ELISA and Western Blot) the first of which has a bad track record of false negatives. This is due in part because it tests instead for someone’s immune response to the bacteria, something that might not be strong enough to register, especially in the beginning stages of the disease.
- The ELISA test used in Canada doesn’t screen for two specific bacterial proteins, bands 31 and 34, which are two of the most reliable markers for the disease. So if you test negative on the first of this two tiered testing protocol with this ELISA test (which 50% - 75% of patients will), you aren’t allowed to proceed to get tested with the Western Blot, the second of the two tests, which can be moderately more reliable.
- There are doctors aware of Lyme disease, that believe in its existence and that know about this flawed testing protocol. But unfortunately because of these negative test results, they can’t get permission to actually treat their patients.
- Health Canada admitted to the low reliability of these tests and has stated so on their website: “The currently available Lyme disease test kits have been found to have limitations of sensitivity and specificity, particularly when used on patients with acute infection, which is usually easily treated with antibiotics. Even when the conventional two-tiered testing approach is used, the sensitivity and specificity of the combined test results can be less than optimal. In a comprehensive study of 280 serum samples from well-characterized Lyme disease patients, the sensitivity of the two-tiered approach was as low as 38% . . . ”
The Canadian Health Care system needs to admit that a negative test result does not necessarily mean you don’t have Lyme, especially when these particular tests are in use. For instance, in Virginia in 2013, legislation was enacted that any patient in the state testing negative for Lyme must be informed that a negative test result does not mean that they don’t have the disease. Also until the system in Canada starts including a patient’s history and symptoms as reliable indicators to the possibility of this disease, patients that are indeed infected with Lyme will continue to test negative and not be treated.
- The signs and symptoms can be very non-specific and found in a multitude of other conditions. Given the fact that testing is so faulty and that many doctors do not believe that Lyme is endemic in many regions, a person could be misdiagnosed with something else.
- Conventional wisdom states that Lyme is always accompanied by the presence of a bulls eye rash. Many Lyme advocacy groups, as well as Lyme literate doctors, dispute this though, referencing evidence that a rash isn’t always present in the first stages (or any stage) of the disease. According the Can Lyme website, only 30% of Lyme patients actually report a rash and only 9% describe it as being the classic bull’s eye rash.
- You can easily not know you’ve been bitten by a tick – less than 50% of people do. The adult black-legged ticks are about the size of a sesame seed and the nymphs are the size of a poppy seed, so they can easily go undetected.
- The following website lists some of the symptoms you may find if you have Lyme Disease: http://canlyme.com/lyme-basics/symptoms/
Again, what isn’t emphasized by doctor's is the importance of a history, as well as symptoms that a patient may have to indicate Lyme. Following are the four areas that you should consider to determine whether you might have Lyme Disease, according to Dr. Marty Ross of Treat Lyme and Associative Diseases.
- Your risk of transmission
- Symptoms consistent with a diagnosis and not explained by another illness
- Physical exam findings
- Supportive testing
The Cases in Canada
Compare the following:
Reported Cases / Year
69 in 2004-2006 10,000 in 1991
128 in 2009 27,000 in 2013
310 in 2014 *300,000 in 2014
- *The CDC realized that they had been grossly underestimating this disease and adjusted their numbers to more than 10 times their initial estimation of 30,000 - up to 300,000 in May of 2014. This doesn’t include the patients that were treated without testing because they did have the tell tale bulls eye rash, so actual numbers would be much higher.
- At a legislative hearing in Cananda in May of 2014, an infectious disease specialist stated that this disease will affect more than 10,000 Canadians by the year 2020.
- Though according to Jim Wilson of Can Lyme, we are most likely already at 10,000 cases annually. When you compare the numbers above, it certainly seems more than likely.
- Early detection and treatment is critical and if caught early, the disease can often be treated effectively with a two-three week course of antibiotics.
- If left untreated, Lyme Disease can progress to affect neurological and motor functions and many patients can end up with a misdiagnose (MS, Parkinson’s and ALS as some examples). It can also spread to the joints, the nervous system, and even the heart. But with Chronic Lyme there is such a long list of nonspecific symptoms that it is a very hard disease to diagnose. There also is additional controversy whether prolonged antibiotic treatment for chronic Lyme is effective or even safe.
- The Canadian government as well as with the Infectious Disease Society of America (IDSA) set the treatment guidelines. These guidelines currently state that Lyme Disease can be effectively treated with no more that four weeks of antibiotics, which is hotly disputed by patients and Lyme literate doctors who recognize that long term (sometimes several years worth) of antibiotics are necessary in some chronic cases.
- If you are a Canadian doctor you run the risk of being disciplined and having your medical licenses revoked if you were to prescribe such a treatment that extends beyond the four week protocol. This ends up forcing patients seeking treatment to go south of the border at their own expense.
If you are lucky enough to live in a province like British Columbia such as myself however, naturopaths now can prescribe antibiotics and will offer you a treatment plan without the additional expense of having to travel to the United States to get it.
The Canadian Plan
- There may be a bit of hope. Elizabeth May, a political leader has proposed a national action plan against Lyme disease this year. It has passed through the House of Commons and has been referred to the Senate. She states that Canada has been in denial for so long now about the existence of Lyme, that lawsuits are piling up and misdiagnosis is more common that not. Canadians are suffering not getting the help they need and are beginning to insist on a change to the system.
It’s people, patients like you or me, that are demanding this change. And it can’t happen soon enough.
Link to references: