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June 3, 2022What to know about hearing loss and Lyme disease
Did you know that hearing loss and Lyme disease can be linked? Most people think of Lyme disease as something you get when you get bit by a tick, and that can be treated and cured short term. However, it can consist of much more than that, especially if it goes undiagnosed and untreated for long periods.
In honor of Lyme Disease Awareness Month this May, we review things you should know about hearing loss and Lyme disease.
What Is Lyme Disease?
Before delving into hearing loss and Lyme disease, we ask the question: what actually is Lyme disease? You’ve probably heard of Lyme disease described as the disease that can come from tick bites. In short, MedLinePlus defines Lyme disease as the following: “Lyme disease is a bacterial infection you get from the bite of an infected tick. At first, Lyme disease usually causes symptoms such as a rash, fever, headache, and fatigue. But if it is not treated early, the infection can spread to your joints, heart, and nervous system.”
Lyme disease is known as an infectious inflammatory disease.
Lyme disease is known as an infectious inflammatory disease. However, the harm caused by the bacteria of one tiny little insect is often underestimated. Indicated in the above definition, we know that Lyme disease can affect many organs and systems in the body. One those systems is the auditory system – the sensory system for the sense of hearing.
Hearing Loss and Lyme Disease
There isn’t one way hearing loss can be affected by Lyme disease. It’s different for everyone and rather complex. It also depends on the stage of Lyme disease one might have. On the other hand, some Lyme patients may not even develop hearing loss at all. However, it’s all too common not to address.
One study in the Journal of Otology and Neurotology by Bertholon (2013), indicates that looking at Lyme in stages can help us better understand hearing loss associated with the disease. For instance, in the early disseminated stage of disease (also known as Stage 2), a common type of hearing loss is sudden unilateral sensorineural hearing loss. In late-stage Lyme disease (Stage 3), the common type of hearing loss seen is progressive bilateral sensorineural hearing loss.
Read more: What is sensorineural hearing loss?
However, this is not to say that these are the only types of hearing loss that can be associated with Lyme disease. In my personal experience, which I will detail more below, I have Lyme disease with multiple co-infections. While my hearing loss is presumably progressive and bilateral, it’s not sensorineural as I was born with a conductive hearing loss at birth.
Read more: How does conductive hearing loss affect the brain?
In simpler, terms, Charlotte Eye Ear Nose and Throat Associates, P.A. states that Lyme disease, “If left untreated, can cause even more severe damage to your body, including your auditory system. This can include hearing loss, hyperacusis, and tinnitus (ringing in the ears). An estimated 48 percent of patients with late-stage Lyme diseases may develop hearing problems.”
Why the link between hearing loss and Lyme disease is important to understand
Although hearing loss is all too common in individuals with Lyme disease, it’s still not widely recognized. It can be so easy to feel overtaken by the other host of debilitating symptoms that Lyme can cause. These symptoms include crippling pain and fatigue, brain fog (cognitive impairment), neurological symptoms, mobility challenges, and much more. As a result, hearing loss can become secondary or overlooked.
Hearing loss in general can feel overwhelming, especially when it comes to medical settings, communication, and so forth. When a medical condition can be a contributing factor in your hearing loss, it can become even more overwhelming. Trying to grasp all of the different information that comes with a Lyme diagnosis or treatment plan in general is a lot to take in and process. With hearing loss, processing that information will be much harder. It can lead you to feel as though you’re missing out on critical information about your health and condition.
Read more: Healthcare providers and accessible communication
Therefore, it’s crucial for doctors and patients to understand the implications that Lyme has on hearing loss. This way adjustments can be made whether it’s interpreters, clear communication, hearing assistive technology, etc. This way patients have equal access to the care they need and can focus on their condition at hand.
“…it’s crucial for doctors and patients to understand the implications that Lyme has on hearing loss.”
My Experience with Hearing Loss and Lyme disease
I was born with a severe bilateral conductive hearing loss at birth. But my hearing loss has had periods of progression throughout different points in my life, including recently when I dropped 10dBls in a year’s time at my last annual hearing test in August 2021.
My doctors and I always thought this was just a normal part of being born with hearing loss and to be expected. Until about a year ago, I neglected to recognize it as a potential symptom of a larger medical issue.
Then a rheumatologist mentioned that hearing loss could be associated with autoimmune disease. I was not found to have an autoimmune disease at the time after four years of many believing so. But this new recognition made me more conscious of the importance of making all doctors aware of the drop in my hearing loss. I became so identified with my hearing loss from a young age that it never felt medical to me. It just felt like a part of me.
“At the time of my recent drop in hearing loss, I was not diagnosed with Lyme. My host of symptoms were a mystery to over 40 doctors and specialists.”
At the time of my recent drop in hearing loss, I was not diagnosed with Lyme. My host of symptoms were a mystery to over 40 doctors and specialists. I had and still have symptoms ranging from chronic fatigue, brain fog, dizziness, neck pain, whole body pain, occasional mobility struggles, cognitive decline, sinus issues, anemia, you name it… There was no name for it other than suspected autoimmune disease that kept us hitting walls. Then it was iron infusions to fix the anemia, among other things.
However, after biting the bullet and paying out of pocket for Lyme testing not covered by insurance, we finally discovered I had Lyme and co-infections. Around that time, we also discovered that I was diagnosed with two genetic disorders (which I’ll save for another article). However, dots started to align. The genetic disorders likely contributed to why I was born with hearing loss. My entire life, we thought it was only because I was born premature. Since the Lyme and co-infections weren’t caught early on, this could be why I experienced drops of hearing more recently.
All of this to say, sometimes it’s the most unexpected things that can impact hearing loss. However, through awareness, advocacy, and research, we can shine a light on the importance of acknowledging the role it plays in the life of those with medical conditions. It is also important to have a stronger understanding of specific conditions associated with hearing loss. Equally important is providing the means of communication necessary for patients to have full and equal access to their complex medical information.
What To Do If You Suspect Lyme Disease
If you suspect you could have Lyme disease, consult your doctor. You don’t have to have to have the common bulls-eye rash associated with Lyme to have the disease. It can also occur and manifest years after being bit by a tick, even if you don’t recall that you have been. It took me seven years of debilitating mystery symptoms to get a diagnosis.
Symptoms can include but are not limited to fatigue, fever, hearing loss, muscle and joint pain, cognitive decline/distortion, gastrointestinal symptoms, neurological symptoms, and others. A full list of symptoms can be found at The National Institute of Allergy and Infectious Diseases and Lyme Disease Association Inc.
And for those struggling with this debilitating disease, whether you’re struggling to get a diagnosis or manage the overbearing symptoms, nothing is impossible if you believe. Never give up the good fight for your health!
