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Lyme Disease — and the Associated Issues with Diagnosis (or no Diagnosis) — Part I

Lyme Disease — and the Associated Issues with Diagnosis (or no Diagnosis) — Part I

 By Don Willis, RPF, Near North Chapter

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The bacteria Borrelia burgdorferi is carried by the blacklegged deer tick and can cause Lyme disease in humans. Lyme disease is not easy to diagnose, and the health-care community is struggling to learn more about diagnosis and treatment. Physicians are either aware of the disease or not — and hopefully have the basic understanding of the need for immediate treatment when informed about someone being bitten by a blacklegged deer tick.

 

Lyme disease should not go untreated, otherwise the symptoms will continue to get worse and can potentially be life-threatening. Transmission of the disease does not always occur with an adult tick bite. Not all adult deer ticks carry the disease. On average, it’s believed that about 20–30% of adult ticks are infected by the bacteria that cause Lyme disease. The nymph or younger tick stages carry a higher percentage of the infection, which has been documented at 60–80% (but again this is not always the case based on the environment and various other factors). Remember this is a complicated disease, and there is no pattern.

In February 2016, the Mayo Clinic in Rochester, Minnesota, identified a new tick-borne bacterial species called Borrelia mayonii (Reader’s Digest, June 2016). As science adjusts to more accurately identify the “Borrelia sp.” and its DNA markers, there is hope that a more accurate diagnosis will occur in the future.

My personal experience with what I believe to be Lyme disease has resulted in my efforts to understand this affliction even more. I must clearly state that despite having gone through numerous medical tests, I have never been positively diagnosed with having Lyme disease. However, in December 2010, I had an “episodic event” that nearly ended my life (while on vacation). Luckily, I was close to a hospital and was able to recover well enough to be discharged. When I returned home, another event occurred, and I was hospitalized for two weeks. I was discharged when my health conditions stabilized, but the medical staff still had no clue about what caused my health issues.

The problem with the bacteria Borrelia is that it can be a great imitator and hides extremely well in the body. Thus, it can evade detection by masquerading as another disease or health issue. One aspect of Lyme disease that is clearly understood is that every human will likely have different health reactions to the disease. To date, I have not met one person who has had my identical symptoms.

We do know that when a tick bites you an exchange of blood and fluid occurs. Researchers do not agree on how long this exchange takes — the range is 8 to 24 hours. A tick will emit a cocktail of bacteria into your bloodstream. This cocktail of bacteria is what causes the different symptoms in each of us.

All of us have unique immune systems. Our diets may be different. Each one of us varies in our health, age, activities and work load. So too can the symptoms of Lyme disease vary. That’s why it is so important for people with suspected cases of Lyme disease to document symptoms and reactions that they experience on an hourly or daily basis. This is an absolute!

One of the key factors to helping manage this disease and getting a diagnosis is documenting your daily health and occurrences. Start a daily journal and record everything. Types of symptom: fevers, not sleeping, odd occurrences in body reactions, food you ate and noticed reactions, how people treat you, what people say about your appearances, physical abilities that are becoming limiting in function, medication you have taken, changes in speech patterns, et cetera. When you are dealing with an unconfirmed case of Lyme disease, your symptoms will change day to day. Having the journal allowed me to discuss with my doctor and other health practitioners exactly what was happening with my health in detail. With the disease, your memory recall will not be the best, so the journal allows you the ability to remember. Especially in the early phases of the disease, you will eat certain foods or combination of foods and then have reactions within a few hours. This needs to be documented.

In addition to writing your own health journal, educational information about Lyme disease is growing in availability. There now are many Lyme groups found locally, regionally, provincially and internationally — they all provide insight and direction for dealing with Lyme disease. It will take time to absorb and clearly understand all of this information. Be patient when reading, especially if you have the disease. Your level of understanding and comprehension will be slower.

My intention in writing this article for the OWA is to share my personal experience with Lyme disease over the course of 4+ years. Hopefully, this information will help those who have similar health issues (perhaps with an unknown cause). I am not a physician, and by no means should my information be used as your treatment plan. This is my personal account — to provide direction on how to get treatment — and advice on working closely with your physician.

When accessing the various Lyme disease websites, most will present a “Lyme Disease Checklist.” This checklist is critical when working with your treating physician. Make sure you obtain a copy and maintain it regularly. This list will be explained further in other articles. It will be used for your diagnosis and also for managing your post-diagnosis treatment. The following checklist is the one that I worked with exclusively, but other versions are also available. Checklist or for more information visit https://canlyme.com/

In Part II of this series, I’ll share the battery of tests that followed after my episodic moment and further explain the steps it took to find a final solution to achieve treatment status. Like the disease, the path to receive the proper treatment is very complicated, but you must be your own advocate, and persistence is a must.

If you have questions for Don Willis, please contact him at This email address is being protected from spambots. You need JavaScript enabled to view it..

lifecycle diagram 2   Tick size comparison on finger web

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