Diagnosing Lyme Disease, why is it challenging? Photo shows white flowers growing in a forest.
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A few weeks ago, I was at the opticians for an eye exam and I was asked about my health history. I always find this a little challenging as I don’t like talking about my Lyme Disease diagnosis. Mostly because I still find it upsetting to think about (given that I became so sick).

But, on this occasion, I felt it was important to mention. When I told the optician that my Lyme Disease had gone undiagnosed for many years she was shocked.

Her response went something along the lines of, “but isn’t Lyme Disease diagnosed with a simple blood test?!

Given that I didn’t have much time, I just awkwardly responded with a weird nod and grimace. I didn’t have it in me to delve into what’s actually quite a complicated topic.

However, I thought it might be interesting to write about here as I think it’s a common misconception  that Lyme Disease is easy to diagnose. Unfortunately, that’s not always the case.

Here are a few reasons why diagnosing Lyme Disease can be challenging.

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The Symptoms Are Non-Specific

Firstly, the symptoms of Lyme Disease tend to be quite vague. There is a reason that Lyme Disease is called the great imitator. It can present very similarly to other illnesses, such as Fibromyalgia, ME/CFS, Lupus, arthritis and MS.

Unfortunately, it’s not uncommon for people to be misdiagnosed with other conditions because their doctor didn’t think to consider Lyme Disease as a possibility. Especially considering many people do not recall a tick bite.

This even happened to me. When my health declined in 2014, my symptoms were put down to a worsening of my Fibromyalgia (which I was diagnosed with in 2013). It was another two years until I found out I had Lyme Disease.

Symptoms of Lyme Disease include:

  • Fatigue
  • Muscle pain
  • Migrating joint pain
  • Flu-like symptoms
  • Dizziness/ feeling off-balance
  • Tingling, pins and needles and sensory disturbances
  • Muscle twitching
  • Vision changes, such as blurred vision and eye floaters
  • Disturbed sleep
  • Noise, sound and touch sensitivities/intolerances
  • Tinnitus
  • Brain fog and cognitive problems
  • Headaches
  • Stiffness, particularly in the neck
  • Heart irregularities, such as palpitations
  • Chest pain
  • Gut dysfunction
  • Shortness of breath
  • Bells’ Palsy

As you can see, Lyme Disease can cause a wide range of non-specific symptoms and not everyone will present the same. Symptoms can also change and get progressively worse with time.

Not Everyone Presents with the Classic Bull’s Eye Rash

Most people associate Lyme Disease with the Erythema migrans (EM) rash (which is diagnostic of a Lyme infection). This often appears as a bull’s eye shape and increases in size.

However, the EM rash  doesn’t always present as you may imagine and it is reported that 1 in 3 people do not get the rash at all (and it’s believed that in reality this figure may actually be higher).

The absence of an EM rash, therefore, does not rule out Lyme Disease.

Lyme Disease Testing Is Unreliable

Even if your doctor thinks to test for Lyme, a negative test doesn’t necessarily rule out the presence of an infection. Unfortunately, many people are told they don’t have Lyme because of a negative test (even when they actually do have the infection).

But why is testing so unreliable?

Commonly used Lyme Disease tests, such as the ELISA and Western Blot, look for antibodies to Borrelia, the bacteria that causes Lyme Disease.

This is problematic because Borrelia is a stealth microbe. It does not stay in the blood for long and, instead, penetrates deep into the tissues of the body. The bacteria can even live inside cells where it is safe from the immune system.

Borrelia Can Evade The Immune System

Borrelia is a clever microbe and has the ability to deploy a number of strategies to evade the body’s immune system. One such strategy is changing it’s outer surface proteins to trick the immune system and go undetected.

Further to that, Borrelia can even change it’s form completely (going from a spirochete to cyst form) making it hard to detect and resistant to antibiotic therapy.

The bacteria can also hide within biofilms. Biofilms are colonies of microbes that stick together and form a slimy barrier for protection (called an extracellular polymeric substance).

Once Borrelia gains the upper hand in the body, immune function becomes compromised.

Diagnosing Lyme Disease Can Therefore Be Difficult

All of the above may mean that your immune system does not produce sufficient antibodies to test positive.  Additionally, the longer you are sick, the more unlikely it is that you will test positive even if you are infected. 

The reality is that testing has limited value and looking at the picture as a whole– patient history, exposure risk and symptoms– is more important.

Further Reading

Unlocking Lyme

If you would like to learn more about Lyme Disease (and tick-borne illnesses*), I would highly recommend the book  Unlocking Lyme by Dr Bill Rawls.

It’s very comprehensive– but easy to understand– and discusses the myths and truths about Lyme Disease, plus practical solutions for regaining your health. You can read my review of the book here.

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* It’s Not Just Lyme

One final point I’d like to make (that is often overlooked) is that ticks carry a whole host of microbes that can make us sick. Borrelia— or Lyme Disease– is just one possibility.

Maybe you don’t have Lyme (and, therefore, test negative), but you could have Mycoplasma, Babesia, Bartonella, Erhlicia, Chlamydia, Anaplasma or Rickettsia. These are commonly thought of as coinfections to Lyme Disease but can cause illness in their own right.

All of this is discussed in further detail in the book Unlocking Lyme.

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Hello, I'm Donna. I was diagnosed with Fibromyalgia in 2013 and started this blog shortly after. After my health declined significantly the following year, I decided to become my own advocate and searched for answers. It took two years but, in 2016, I finally discovered I had Lyme Disease. On February Stars, I share my personal journey back to better health; discussing what has helped me and the mistakes I've made along the way. I also cover topics on self-improvement, managing symptoms and living life to the fullest with chronic illness.

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