Knowledge is power when it comes to identifying Lyme disease

Opinion

To the Editor:

It is unfortunate that knowledge regarding Lyme and co-infections is controversial at this time. There are still health care professionals who say ‘no Lyme here’ or will tell you they do not believe in it. There is little knowledge of Lyme and the co-infections ticks can carry. The ones who suffer are the patients and their families as they struggle to get a diagnosis and treatment.

It was once thought that Lyme was a rare and isolated disease. This is not so; Lyme is a growing pandemic that has been ignored. There are numbers published on how many cases there are but many Lyme disease advocates, researchers and Lyme-knowledgeable doctors consider this number to be too low. There is NO reliable blood test for Lyme disease at this time. A negative Lyme disease test does not mean you don’t have it. The Lyme blood test is testing for Lyme antibodies in your system. If Lyme is suppressing your immune system enough then you will not be producing the antibodies…guess what? You get a negative test and are told you do not have Lyme. The only testing accepted in Canada is testing done in Canada. The test is known to have limited accuracy. Reported in Nova Scotia in 2019 there were 830 confirmed or probable cases of Lyme, up from the 454 in 2018. The number of cases will continue to grow. This number could be multiplied by 10 which would likely be a more accurate reflection of the actual number of people sick and suffering.

The majority of Lyme-knowledgeable doctors will tell you Lyme disease is a clinical diagnosis, based off of symptoms and history and not a laboratory diagnosis based off test results. If you find a tick that has bitten you, SAVE IT. You can send the tick for testing or wait to see if you start to show any symptoms then you can mail the tick for testing (https://www.lloydticklab.ca/tick-testing.html). I have had people tell me it was the best money they had spent for having peace of mind.

Ticks can be very small, smaller than a poppy seed and unfortunately many people do not know they have been bitten. The tick saliva contains a numbing agent that makes the bite painless and thus unnoticed. Ticks also secrete a cement-like substance to help them remain attached. Ticks will naturally fall off after feeding is complete unless accidentally knocked off or removed. It is important to learn the proper tick removal technique. Many people do not react to having been bitten, no itching or redness.

Lyme disease manifests itself differently in everybody. How Lyme affects someone depends on the individual, the amount of time that has passed before treatment was started as well as a thousand other variables. This is what makes Lyme so hard to diagnose and so hard to treat, there is no one-size-fits-all presentation or treatment.

Treatment with antibiotics if you catch the disease early is a solid treatment option. Treatment must be long enough to eradicate the bacteria which has a 28-day life cycle. Once you get into late stage Lyme the treatment is most controversial with the antibiotic versus non-antibiotic treatment plan. It is important to support the body first, many use herbal supplements and natural treatments with their healing and well being journey. Proper antibiotic treatment is still needed to help remove the bacteria so the healing can begin. There is no quick fix at this point.

It is important to find a doctor who is knowledgeable regarding vector-borne diseases. Most people end up travelling out of country at their own expense seeking help which can take months to years.

Most people with Lyme are first diagnosed/labelled with some other condition. Lyme affects every organ/system in the body and presents itself differently in every patient and it is almost ALWAYS misdiagnosed at first. Many people are sick with no known cause of what is causing their health problems.

It is not just Lyme that is of concern but the co-infections as they are the rule, not the exception. Most infected ticks also carry other common co-infections; the testing for these other infections is unreliable and expensive, which means it can be incredibly hard to nail down an exact cocktail of what are invading your body. Which obviously makes figuring out what treatment is appropriate just as tricky.

The guidelines followed in Canada are from the Infectious Disease Society of America (IDSA) while there are other choices, the International Lyme and Associated Diseases Society (ILADS) for one. These are guidelines as every case is different. It is unfortunate that more often than not patients are all put in the same box ignoring how each case is different.

Treating vector-borne disease, ie Lyme, can be very expensive. It is past time for people to have proper and adequate treatment in Canada. Training health care professionals is a good first step as is setting up a clinic that deals with these diseases.

People are working hard to gain knowledge to keep themselves safe. It is now time for doctors to do the same.

Education is key!

Brenda Sterling-Goodwin

New Glasgow