Not Lyme disease – then what?


To the Editor:

We have been told by the health care system that Lyme disease is hard to catch and easy to treat. In Canada they follow the outdated IDSA Infectious Disease Society of America guideline (guideline are just guidelines, they are not etched in stone) that have not changed since 2006; much in the world has changed since then, science has progressed and we know much more about new species, new modes of transmission, etc., since 2006. There is also ILADS International Lyme and Associated Diseases Society that has a totally different take on Lyme, recognizes that Lyme can be chronic with no cure, only remission. There is a need for more research, better testing and treatment that will actually make a difference. In the mean time, there are too many people being swept under the rug and left to suffer.

How many people have been labelled with a health condition with no definitive cause? In science there is always a cause and effect, but in medicine, if the reason is unknown it is referred to as an idiopathic condition or more recently called a MUS (medically unexplained symptoms) or MUPS (medically unexplained pain symptoms). In many cases, the symptoms are treated/controlled rather than knowing what is at the root of the problem and many are being told the problem is psychosomatic.

There are many conditions that Lyme could be the root cause; it is important to check out all possibilities. Lyme testing in Canada is poor and tests outside of Canada are not accepted by the medical system here. There is no test that is one hundred percent accurate. Lyme is a clinical diagnosis but how many doctors are actually trained to make a clinical diagnosis?

I know of many people who have told various things over time that they have such things as Chronic Fatigue then Fibromyalgia or Crohns and the list goes on — COPD, heart, asthma, MS, nerve damage, acid reflux, fibroid tumors, thyroid cysts, pulmonary lung cysts etc., when in truth the problem is unknown. The sad truth of it is that many doctors will not even consider Lyme, or consider it too late when damage to the body is done.

There are two blood tests for Lyme — the Elisa and the more sensitive Western blot test. If the Elisa test is negative you cannot get a Western blot test. In many cases if the test is positive people have reported that they have been told by their doctors that it is a false positive and look no further. Both doctors and patients need to realize that a negative test does not mean you do not have Lyme. The body must initiate an immune response in order for there to be a positive test. Before the body has had time to do this, the test will be negative and some of the sickest people will never show a positive test because their immune systems are too weak from their illness. If testing is done in the USA or Germany where they are testing other strains of the bacterium, the results are not accepted in Canada.

It is past time when vector-borne diseases and diseases we get from animals — zoonoses — are on the radar for medical doctors; veterinarians already know about them. It is time for the various medical communities to get together and collaborate on this growing problem.

The number of pets getting bitten and contracting Lyme has escalated over the years as has the number of people being bitten and infected. The difference is dogs get treated, humans do not.

The Lyme battles continue. Education is key!

Brenda Sterling-Goodwin

New Glasgow

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