https://www.thechronicleherald.ca/opinion/opinion-how-many-cases-of-lyme-disease-are-we-missing-327404/

OPINION: How many cases of Lyme disease are we missing?

 Black-legged, or deer ticks are not the only kind of tick that can transmit disease, dog ticks like the one shown here and have been found to carry a number of things, writes Donna Lugar. - 123RF
Black-legged, or deer ticks are not the only kind of tick that can transmit disease, dog ticks like the one shown here and have been found to carry a number of things, writes Donna Lugar. – 123RF

DONNA LUGAR

I participated in a “Tick Talk” in Bedford with Lisa Ali Learning of AtlanTick on June 25. One takeaway from that meeting, for me anyway, is that we are not doing enough to ensure Nova Scotians are adequately aware of the risks associated with tick bites. One family, new to the country, had never even heard of ticks before one recently attached to their child.

Although there has been a steady increase in awareness initiatives over the past few years, we need to continue to do more to reduce the number of new cases of Lyme and tick-borne diseases. One way to do this is through more “in your face” awareness, such as signage, print media and radio/TV alerts. Nova Scotians need to reach out to all three levels of government to request that more is done.

Nova Scotians need to know that any tick that bites them could potentially transmit an illness. Black-legged (deer) ticks are not the only kind of tick that can transmit disease, and Lyme is not the only thing we need to worry about. Dog (wood) ticks have been found to carry a number of things, and Lone Star ticks have been found sporadically within the province. As well, migratory birds could be dropping other types of ticks within the province that we haven’t even discovered yet. Any tick that bites a human could potentially be carrying disease — sometimes multiple illnesses.

Symptoms can vary from person to person, with some not showing any outward, visible signs, so medical professionals need to listen to their patients and start to put two and two together.

Please learn what preventative measures to take and how to properly remove attached ticks. This document, which I prepared, provides a lot of information, including how to remove a tick, what to do to prevent tick bites, as well as outlining a number of potential co-infections.

We also need to do more to ensure that those bitten receive a quick diagnosis and appropriate treatment. It’s time our doctors learn that, according to the Canadian Adverse Reaction Newsletter, Volume 22, Issue 4, October, 2012, there are at least three possible reasons for a false negative ELISA/Western Blot.

  • The fact that the test is performed too early (which most are aware of)
  • It could be a different strain of the Borrelia bacteria not picked up by the test (we also have Borrelia miyamotoi in the province, which can cause a Lyme-like illness and doesn’t generally present with a rash)
  • Antibiotic use. If you were put on antibiotics for something between the bite and the test, or only received a one-day prophylactic treatment upon the bite, you could always test false-negative.

According to Conquering Lyme Disease, a book by doctors at the Columbia University Medical Center, “false negative rates on the ELISA have been reported as high as 67 per cent in early Lyme disease and 21 per cent in early neurologic Lyme disease.” The potential for people to not form enough antibodies to be picked up by the test is also possible.

If your test is negative, it doesn’t mean you do not have Lyme!

There is a proviso in Guidance for Primary Care and Emergency Medicine Providers in the Management of Lyme Disease in Nova Scotia that states, on page five, No: 3, under IDEG Recommends: “Patients presenting with a non-specific febrile illness, but no EM–like rash, AND a recent, clear exposure in an area at moderate or higher risk for Lyme disease (https://novascotia.ca/dhw/CDPC/lyme.asp) should be tested and monitored for other symptoms suggestive of Lyme disease. Repeat testing in 4-6 weeks is suggested if there are still concerns that the patient has Lyme disease.” I have only heard from a few people who received repeat testing and that was usually at their own insistence.

Also very important to note is that Lyme is supposed to be a clinical diagnosis, with testing supplementary. Unfortunately, doctors may recognize the better-known bull’s-eye rash, but that is only seen in 20-30 per cent of cases (if that). Other types of erythema migrans rashes are more common. About 20 per cent do not get any rash (Borrelia miyamotoi, perhaps?), while many that do don’t see it because it is tucked away somewhere not easily visible, just like the ticks like to be.

Symptoms can vary from person to person, with some not showing any outward, visible signs (such as an erythema migrans rash, Bell’s palsy, or swollen, hot knees), so medical professionals need to listen to their patients and start to put two and two together. That includes changes in mental health, new digestive issues, new sensitivities to scents, sounds, light and food, migrating pain, more frequent headaches, changes to heartbeats, and so much more that can be suggestive of Lyme and tick-borne diseases.

Rather than immediately dismissing Lyme and tick-borne diseases, as many doctors are still doing to this day, they need to realize that this issue is not rare, hard to get or easy to treat.

In other words, it is very hard to get a diagnosis if you do not see the tick, get the bull’s eye rash version of the erythema migrans rash, and/or test positive on both the ELISA and confirmatory Western Blot.

How many are we missing?

Donna Lugar is Nova Scotia representative of the Canadian Lyme Disease Foundation and founder of the N.S. Lyme Support Group. She lives in Bedford.