Lyme Disease: A Patient’s Perspective

On September 2019, Dr. Tom Shackleton made a presentation on Lyme Disease: View from the Chairside: The Implications of Lyme Disease on Dental Treatment. 

Ms. Margot A. Hayes watched the presentation and submitted the following opinion based on her personal experience as a Lyme disease sufferer herself. You will also find below, Dr. Tom Shackleton's response to her letter. 

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CDA Oasis Team

More to Lyme Disease than Meets the Eye

It is very commendable that Dentists are being educated on the topic of Lyme Disease, one of the fastest growing infectious diseases in the world today. According to the CDC, there are approximately 300,000 new cases every year, in the US alone. This disease, much like AIDS in the 1980’s, is very controversial and desperately needs further study. As a Lyme Disease sufferer myself, I strive to educate people regarding the latest research and would like to address a few key points from the recent ‘View from the Chairside’ educational video.

1- Not everyone who contracts Lyme Disease gets the erythema migrans rash, which appears sometimes in the shape of a bullseye. In fact, some studies show that as few as 9% of Lyme sufferers had the stereotypical bullseye shape, while approximately 50% had diffuse homogenous red plaques.1. Others had no apparent rash at all.

2. The minimum transmission time of the Borrelia pathogen still needs to be determined. Data indicates; however, that ticks do not need to feed as long as 36 hours to transmit disease, as previously thought. Lyme Disease spirochetes can be transmitted very often in less than 24 hours and in some cases, less than 16 hours.2. Because the spirochetes have been found in the salivary glands of ticks, it may be determined in the future that transmission time is much quicker.

3- Unfortunately, diagnosis is not straightforward in many cases. According to the CDC, Lyme Disease is primarily a clinical diagnosis based on symptoms, physical findings and possibility of exposure.3. Lab serology may be used to support the diagnosis. The constellation of complicated & migratory symptoms are sometimes difficult to recognize as they mimic other diseases such as MS, ALS, Parkinson’s, dementia, etc.

According to a recent peer reviewed study by Dr. Ralph Hawkins and Dr. Vett Lloyd, it is estimated that approximately 90% of cases are going undiagnosed in Canada.4. More conservatively, a recent article by the Public Health Association of Canada, speculates that as many as 66% of cases are going undiagnosed in our country.5. Also, serology tests are not as accurate as needed. Even the ELISA C6 serology test product insert states; that negative test results should not rule out Lyme Disease.6.

4- Unfortunately, Lyme Disease is not as easy to treat as once thought. 2-3 weeks of doxycycline is not always enough to eradicate the disease and alleviate symptoms. The many reasons for this include; the long life cycle of Borrelia, bacteria persistence and, like syphilis, Borrelia can also be present in a resistant cystic form.7. 8. 9.

5- Post Treatment Lyme Disease Syndrome (PTLDS), sometimes known as chronic Lyme Disease, is a very real medical condition. According to a study performed by John Hopkins University, patients with PTLDS had a myriad of symptoms including: fatigue, musculoskeletal pain, insomnia and depression. They also expressed an increased need for physician education on this condition, including how to identify symptoms and manage patient care.10.From my personal experience, there have been no secondary advantages, such as gaining attention, as mentioned in the video. Most sufferers find Lyme an extremely lonely and isolating disease, as your professional and social circles often become virtually non-existent.

6- Lyme disease is further complicated because it is extremely rare for a person bitten by a tick to have only been infected by one pathogen. Ticks transmit many types of bacteria and viruses including Babesia and Bartonella, which if not caught early can cause a myriad of symptoms that
are difficult to treat, as well as immune suppression.11.

7- As a dentist, any treatment or intervention that may challenge the immune system of a Lyme Disease sufferer needs to be considered carefully, much as you would any immunocompromised patient. Also, due to their weakened state, Lyme sufferers often have increased reactions to chemicals and heavy metals.

In conclusion, because Lyme pathogens can often reside in the mouth, dentists have an important role in preliminary identification of Lyme disease. Recognizing clinical manifestations including dental pain, neck stiffness, facial palsy, pulpitis and headaches, existing without dental
pathology, is key to the health of your patient.12.

Dr. Shackleton's response to Ms. Hayes' Letter

Dear Ms. Hayes:

Thank you for your interest in my Lyme disease presentation on CDA Oasis and your contribution to this very important discussion. While significant progress has been made with regard to diagnosis and treatment of Lyme disease and Post Treatment Lyme Disease Syndrome (PTLDS), much more work lies ahead, as you pointed out in your letter. This is a topic that should be appreciated by all Canadian Dentists.

Ongoing conversations like this on CDA Oasis, continued science-based research and increased public awareness will hopefully result in fewer sufferers of Lyme disease and PTLDS. Thank you for your efforts as an advocate for those who have no voice and wish you increased success as you continue to educate others about Lyme disease and its consequences.

Regards,

Tom Shackleton DDS, MS
Diplomate, American Board of Orofacial Pain
Fellow, American Academy of Orofacial Pain