It Took Me 10 Years To Diagnose My Lyme Disease. Here's What I Wish I'd Known

It Took Me 10 Years To Diagnose My Lyme Disease. Here's What I Wish I'd Known Hero Image
Photo: Lukas Korynta

Like most people, I never gave Lyme disease a thought. However, after getting extensive tick bites (six to be exact) while on a medical service trip in Central America during the Summer of 2005, my life forever changed. When I returned to the states, I was not well. Basically, I felt like I had the flu. And that was my only symptom. I was concerned about Lyme, but the tests were all negative. So the doctors dismissed me as being rundown with a lingering flu. Well, long story short, that was a BIG mistake. I did have Lyme, but it took me over 10 years to find this out. And because of this, my immune system basically shut down, and this led to a severe case of chronic fatigue over time. In January 2013, I ended up fully bedridden. Lyme was finally uncovered as an underlying cause, but because of the long delay in getting diagnosed (and treated), I found myself in a hole that took me over four years to crawl my way out of. This was because I didn't just have Lyme at that point. I had so much more. Here's what I wish I had known about Lyme:

1. In the first 3 to 30 days after a tick bite(s), the primary symptoms of Lyme disease are flu-like symptoms.

This means fever, chills, headache, fatigue, muscle and joint aches, swollen lymph nodes, and a rash. However, up to 30 percent of those infected never display a rash. I never had a rash! I only had the flu-like symptoms.

2. According to the CDC, Lyme disease should be diagnosed based on symptoms, physical findings, and exposure to ticks.

Well, for some reason, the initial doctors I sought help from in 2005 didn't seem to care that I displayed the early signs of Lyme (such as fever, chills, and fatigue) and reported heavy exposure to ticks with extensive bites. All they seemed to care about was that my lab tests for Lyme were negative, which ended up being a big mistake!

3. Lab tests for Lyme disease are falsely negative in up to 40 percent of patients.

Therefore, it I was not surprising that no one could confirm a diagnosis for me based purely on numbers. It wasn't until 2015 (by using alternative methods for diagnosing) that my Lyme disease was actually uncovered.

4. There are several reasons why a test for Lyme may be falsely negative.

Reasons include being infected with a strain the test cannot measure, having a suppressed immune system, or having the test done too soon after exposure. Well, I did have a very suppressed immune system. You can read my prior story on hypothyroidism to learn more. And the tick bites I did sustain were from out of the country, which I was later told can make diagnosing even more challenging. And my initial lab test was drawn within days of infection, so this, too, was problematic.

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5. If Lyme disease is not treated early, endless complications can arise.

This is because the spirochetes (or Lyme bacteria) can spread anywhere and everywhere in the body. Weeks, months, or years later, symptoms can appear that affect the nervous system and brain, muscles and joints, heart and circulation, digestion, reproductive system, and skin. And yes, my whole body did shut down with time. I endured severe hypotension, burning joints, severe brain fog, digestive impairments (I could handle only a handful of foods), and more. But for me, this was all overshadowed by the severe and debilitating fatigue.

6. There's an important connection between fatigue and Lyme.

With chronic Lyme (i.e., Lyme that is left untreated) the predominant symptoms are fatigue (79 percent), joint pain (70 percent), muscle pain (69 percent), sleep problems (66 percent), brain fog (66 percent), depression (62 percent), neuropathy (61 percent), headaches (50 percent), and heart problems (31 percent). The strong fatigue component explains why many patients diagnosed with chronic fatigue actually have Lyme. And yes, fatigue, was my chief complaint once I crashed.

7. Treatment of chronic Lyme with antibiotics is often unsuccessful.

This is partly because of drug-resistant biofilms, which protect the infection from getting eradicated from antibiotics or the immune system. I am very familiar with the challenges of biofilm. Although my overseeing physician had me on biofilm breakers, it wasn't until I started using light therapy that I started to make significant headway.

8. If you are ever bitten by a tick, Lyme disease is just one of many possible outcomes.

Basically, ticks are carriers of endless infections, which is why those with Lyme often have at least one co-infection. The most common co-infections are babesia (32 percent), bartonella (28 percent), ehrlichia (15 percent), mycoplasma (15 percent), Rocky Mountain spotted fever (6 percent), anaplasma (5 percent), and tularemia (1 percent). Mycoplasma (specifically mycoplasma pneumonia) was actually my most significant problem (according to my physician). Mycoplasma pneumonia can present itself without any respiratory symptoms, which is why major skills are needed to detect this infection when only extrapulmonary manifestations are present.

9. Undiagnosed and untreated Lyme will cause a lot of harm over time.

I should know—it happened to me. But eventually I was able to get myself back on track.

Get inspiration on Lyme disease recovery (and to treat it naturally!), and read Rachel's story here.


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