There is a considerable amount of misinformation about Lyme and Tick-borne diseases but there are a few things that I hear about frequently. I thought I would try to clear some of the issues up, as much as possible.
Although the bull’s-eye rash is a telltale sign of Lyme, many do not realize that this particular rash is only one of a variety of erythema migrans (EM) rashes possible. In actuality, only a small percentage of people will get this particular manifestation.
An EM rash may (approx. 20%, or more, do not get any rash) show up three to 30 days after a bite. The rash generally expands slowly over days and can spread to 30 centimetres across. It’s typically not itchy or painful but might feel warm to the touch. An Erythema migrans rash is one of the hallmarks of Lyme disease. (Mayo Clinic)
The EM and bull’s-eye rashes are frequently used interchangeably as if they mean the exact same thing resulting in many people (doctors and the public) thinking that they do not have Lyme because their rash is different, or they didn’t have one.
To add to the equation, those with darker skin may not see the rash, leaving even more people without the benefit of the “hallmark” of Lyme disease.
ELISA/Western Blot Lyme tests:
I frequently hear that if a Lyme test comes back negative, people are told by their doctors that they do not have Lyme. According to a Canadian Adverse Reaction Newsletter (Volume 2 – Issue 4), published by the Government of Canada in October 2012 (and verified to be accurate as of May, 2019), the Lyme disease test kits have sensitivity and specificity limitations and should not be the primary basis for making diagnostic or treatment decisions – https://www.canada.ca/en/health-canada/services/drugs-health-products/medeffect-canada/health-product-infowatch/canadian-adverse-reaction-newsletter-volume-22-issue-4-october-2012.html#a1.
The Newsletter goes on to state that there are at least three reasons for a false-negative: (a) a slow antibody response early in the course of the disease, (b) genetic diversity of Borrelia burgdoferi and (c) treatment with antibiotics.
In the book “Conquering Lyme Disease”, by doctors at Columbia University Medical Centre, other reasons for a possible false-negative are noted.
In other words, just because your test is negative does not mean you do not have Lyme or a Lyme-like illness.
The confirmed/probable case numbers used in Nova Scotia, and Canada, are thought of as being fairly low and therefore many are not overly concerned about the possibility of contracting Lyme or Tick-borne diseases. However, research has recently been undertaken on what the true numbers may be in this country. Of course, as is the case in all things Lyme, there is conflicting information. However, both research documents do agree that there are more annual cases than the confirmed/probable case numbers would suggest.
The first research published – https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6315539/ suggested that only 1 in 10 cases are reported. After this research was published, another document was prepared in response that suggested that although the “precise degree of under-reporting is unknown”, it is not as high as the first research document would suggest – https://bmcpublichealth.biomedcentral.com/articles/10.1186/s12889-019-7219-x.
From my own personal experience, I know that many cases are not included in the confirmed/probable case numbers, mine included, because many people are clinically diagnosed but may have had more subjective clinical evidence rather than objective clinical evidence. With my over 40 symptoms, except for an erythema migrans rash (at least I didn’t see one), swollen knees or other visible, easily confirmed symptoms, my doctor still clinically diagnosed me with Tick-borne diseases. I had a multitude of symptoms, affecting numerous systems, and lived and traveled in a highly endemic area. That is the way Lyme and Tick-borne diseases is supposed to be diagnosed.
Whether the true annual numbers are three times higher, 10 times higher, or more, there are enough cases that those in known endemic areas, and elsewhere, should undertake regular preventative measures and consider Lyme and Tick-borne diseases when health issues arise that are not easily diagnosable. Even then there is a risk of a misdiagnosis as many symptoms overlap and if you have a number of symptoms that do not fit under your particular diagnosis, or you have been diagnosed with a number of auto-immune illnesses, consider the possibility of a Tick-borne disease, or two.
Educate yourself as many health care professionals are lacking in this regard.