Archive for the ‘Hearing Loss’ Category

Lyme & Sensory Overload

Lyme disease can result in sensory overloading, causing patients to develop a sensitivity to both light and sound.

A few years ago, some new friends invited me for a night out at what I thought was going to be a quiet restaurant. When I got to the establishment, though, I discovered it was a club with strobe lights and loud music. Wanting to be polite, I sat down at a table with the group and tried to make conversation. I lasted about five minutes before I needed to excuse myself.

Before I got sick with the tick-borne illnesses Lyme disease, babesiosis, ehrlichiosis, and possible bartonella, I enjoyed nights out at clubs. I danced the night away to loud music. I never even noticed lighting. Now, the neurological effects of my illnesses cause sensory overload, with particular sensitivity to light and sound. Bright flashing lights, fast-moving images on a screen, or even fluorescent lighting in a store can make me want to turn away and close my eyes. Loud noises ranging from music to an action-packed movie make me quickly cover my ears or turn down the volume.

Doctors Explain the Science Behind These Lyme Symptoms

As Brian A. Fallon, MD and Jennifer Sotsky, MD explain in their book Conquering Lyme Disease: Science Bridges the Great Divide, “Lyme disease can affect the sensorium early and severely, and such effects, in some cases, persist beyond recovery from other symptoms.”[i] The disease can affect the sensorium via the infection itself and systemic immune effects, changes in neurotransmitter balance, and altered neural pathways, all impacting sensory processing. For some patients, this might mean sensitivity to extreme lights or sounds that can cause a flare of other neurological symptoms. Just a few minutes of overload can bring on a sense of my head feeling “full,” brain fog, or twitching and burning extremities. Drs. Fallon and Sotsky note, “Exposure to light may lead to headaches, eye pain, or even panic attacks. It can be very helpful to recognize that the feeling of extreme anxiety in certain settings is related to sensory issues rather than coming out of the blue or in reaction to interpersonal tension.”

For other patients, the sensitivity may come from more subtle light or sound exposure, things that other people might not notice but that can send the Lyme patient’s nervous system into overdrive. I know one patient who felt like she was listening to loud music if someone merely whispered on the other side of the room. Repetitive noises, like a ticking clock, can be especially grating. “Most of us take for granted that our senses provide us with a more or less accurate representation of the external world,” write Drs. Fallon and Sotsky. “But when colors appear suddenly too intensely bright, or normal ambient sounds, rather than being soothing, grate against us like a rasp on metal or fingernails on a blackboard, then there is a brutal awakening to the fact that we are, in our very essential being, at the mercy of our sensory apparatus.”

What Lyme Patients Can Do to Control These Symptoms

Because sensory overload may or may not improve with treatment as other symptoms do, patients need to learn to control external factors that can set this symptom off. For example, I have realized that I can handle watching a movie in the theater as long as I don’t sit too close to the screen, and as long I as wait in the lobby during previews, which tend to be particularly loud and flashy. I’ve gotten rid of ticking clocks from my home. I’ve turned off the “zoom” feature on my phone, so it doesn’t look like the apps are flying at me when I open the screen.

Making these lifestyle adjustments can be frustrating, especially if you’re someone who previously enjoyed big shows and now cannot. For me, the modifications are worth it to avoid neurological symptom flares. And while my sensory overload has not gone away, it has improved over time. When I was acutely ill, I couldn’t even watch a movie on a small screen at home. Loud voices were too much for me. My tolerance has improved, and now I can handle acoustic concerts and stores with fluorescent lights. And I don’t need a club scene to enjoy a night out with friends. I just need their company, which is more fun anyway when I don’t have to shout over loud music to talk to them

To read more GLA blogs, click here.

The above material is provided for information purposes only. The material (a) is not nor should be considered, or used as a substitute for, medical advice, diagnosis, or treatment, nor (b) does it necessarily represent endorsement by or an official position of Global Lyme Alliance, Inc. or any of its directors, officers, advisors or volunteers. Advice on the testing, treatment or care of an individual patient should be obtained through consultation with a physician who has examined that patient or is familiar with that patient’s medical history. 

[i] Fallon, Brian A., MD and Sotsky, Jennifer, MD. Conquering Lyme Disease: Science Bridges the Great Divide. New York: Columbia University Press, 2018 (315).


Jennifer Crystal

Opinions expressed by contributors are their own. Jennifer Crystal is a writer and educator in Boston. Her work has appeared in local and national publications including Harvard Health Publishing and The Boston Globe. As a GLA columnist for over six years, her work on has received mention in publications such as The New Yorker,, CQ Researcher, and Jennifer is a patient advocate who has dealt with chronic illness, including Lyme and other tick-borne infections. Her memoir about her medical journey is forthcoming. Contact her via email below.


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Lyme Disease Triggers Vertigo & Hearing Loss

Lyme disease triggers vertigo and hearing loss

woman with lyme disease and vertigo sitting and holding head

Vertigo (spinning sensation or feeling off balance) and hearing loss have been reported in several studies as symptoms of Lyme disease. One study found 4 out of 27 patients with neurologic Lyme disease experienced hearing loss.¹ Vertigo was reported in 5 out of 8 Lyme disease patients (62.5%) by Selmani et al.² Additionally, investigators suggest that vertigo can be the predominant symptom in patients with confirmed Lyme disease — its symptoms resembling neuronitis vestibularis in the acute stage.³

A recently published study by Sowula and colleagues provides further evidence that Lyme disease can trigger vertigo and hearing loss. In their article “Vertigo as one of the symptoms of Lyme disease,” the authors examine the frequency of vertigo symptoms and potential labyrinth damage in patients with diagnosed Lyme disease.4

The study included 38 patients (ages 20 to 77) with Lyme disease, who were hospitalized at University Hospital in Krakow, Poland, between 2018 and 2019, due to vertigo or dizziness.

“One alleged group of diseases which can trigger vertigo involves infectious diseases of the nervous system,” the authors explain.

“Many pathogens are said to be in part responsible for inflammation; among them are spirochetes of Borrelia [the causative agent of Lyme disease] as well as other pathogens transmitted by ticks.”

The study found:

  • 76% of the Lyme disease patients reported vertigo (54% of them were woman compared to 22% of men);
  • Hearing loss and tinnitus were symptoms which frequently accompanied vertigo;
  • 1 in 3 patients experienced sensorineural hearing loss (SNHL), which was bilateral in 2 individuals and presented as sudden deafness in 2 other individuals. The hearing loss was significant for high frequency hearing loss but not low frequency hearing loss;
  • Tinnitus was reported in 3 out of 5 of the Lyme disease patients, the majority of whom experienced high frequency tinnitus.

“Increasingly, tick-borne illnesses [such as Lyme disease] are a potential cause of neurological symptoms reported by patients, including hearing loss, tinnitus, ataxia and vertigo.”

The authors conclude:

“It [vertigo] is frequently connected with labyrinth damage and hearing-organ impairment, which suggests that in the course of this disease the inner ear or nerve VIII is dysfunctional … Antibiotic therapy is effective in reducing otoneurological symptoms.”4

  1. Logigian EL, Kaplan RF, Steere AC. Chronic neurologic manifestations of Lyme disease. N Engl J Med. Nov 22 1990;323(21):1438-44. doi:10.1056/NEJM199011223232102
  2. Selmani, Z.; Pyykkö, I. Cochlear and vestibular functional study in patients with sudden deafness an Lyme disease. IJOHNS 2014,3, 46–50.
  3. Ishizaki, H.; Pyykkö, I.; Nozue, M. Neuroborreliosis in the etiology of vestibular neuronitis. Acta Otolaryngol Suppl. 1993, 503,
  4. Sowula K, Szaleniec J, Dworak M, et al. Vertigo as One of the Symptoms of Lyme Disease. J Clin Med. Jun 25 2021;10(13)doi:10.3390/jcm10132814


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Lyme & Sudden Hearing Loss



An article by Sowula and colleagues, published in the Journal of Clinical Medicine, describes nine patients with Lyme disease who had sudden sensorineural hearing loss (SSNHL), also referred to as sudden deafness.[1]

The study aimed to assess the prevalence of this type of sudden onset hearing loss, particularly among Lyme disease patients. The authors explain, “Sudden sensorineural hearing loss (SSNHL) is defined as sensorineural hearing loss of 30 dB or more over at least three adjacent audiometric frequencies occurring within a 72-h period of time.”

This type of sudden onset hearing loss can be caused by a viral infection, vascular insufficiency, autoimmune disorder, neoplasm, stroke and irradiation. 

Treatment is directed towards the cause with standard therapy typically involving corticosteroid, vasodilators, and ionotropic agents, the authors write. Unfortunately, the cause is unknown in 90% of the cases.

The study looked at 86 patients who were hospitalized, between 2017 and 2018, due to sudden sensorineural hearing loss. As part of their evaluation for sudden onset hearing loss, patients were tested for Lyme disease.

Out of 86 patients, 9 tested positive for Lyme disease. Other studies, however, indicate that up to 21% of patients with sudden sensorineural hearing loss test positive for Lyme disease, the authors write.

Hearing loss patients with Lyme disease

On average, the 9 patients were around 47 years old, with an age range between 30 and 70. None of the Lyme disease patients responded to intravenous corticosteroids, microcirculatory drugs, or ionotropic drugs.

Seven of the nine patients with sudden onset sensorineural hearing loss were treated with oral doxycycline or intravenous ceftriaxone.  

Four patients were treated with doxycycline. Hearing improved by 10dB for one of the patients.

Complete hearing recovery with IV ceftriaxone

The remaining 3 patients, who were treated with intravenous ceftriaxone, had complete improvement in their hearing loss.  

“Those three patients reported a complete recovery of hearing (PTA shows respectively 15.20 dB HL for low frequency and 28.35 dB HL for high frequency),” the authors write.

“Infections caused by Borrelia burgdorferi may contribute to the development of inflammatory and angiopathic lesions, which are a possible cause of [sudden sensorineural hearing loss].”

Unfortunately, 2 patients were left with high-frequency tinnitus. “In these patients, tinnitus was present from the beginning of the disease,” the authors write.

The group of 9 Lyme disease patients “was treated with antibiotics and experienced partial or complete regression of their deafness,” the authors conclude. “This may suggest a relationship between [sudden sensorineural hearing loss] and Lyme disease.”

“The longer the duration of the infection, the greater the likelihood of permanent and irreversible changes in the vessels of the cochlea or auditory nerve,” the authors caution.

  1. Sowula K, Szaleniec J, Stolcman K, Ceranowicz P, Kocon S, Tomik J. Association between Sudden Sensorineural Hearing Loss and Lyme Disease. J Clin Med. Mar 8 2021;10(5)doi:10.3390/jcm10051130


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Lyme Disease Patient With Permanent Tinnitus & Hearing Loss  Podcast here



Hello, and welcome to another Inside Lyme Podcast. I am your host Dr. Daniel Cameron. I find that the best way to get to know Lyme disease is through reviewing actual cases. In this episode, I’ll be discussing a case involving a 46-year-old man with Lyme disease who developed permanent tinnitus and hearing loss.

Jozefowicz-Korczynska and colleagues first described this case in the journal Frontiers in Neurology in 2019.

A 46-year-old male farmer was hospitalized with a “sudden onset of tinnitus and hearing loss in the left ear, dizziness, severe balance instability, and gait ataxia,” the authors write.  (Gait ataxia consists of lack of voluntary coordination of muscle movements.)

Doctors initially suspected vestibular schwannoma, which is a benign tumor of the 8th nerve (also referred to as an acoustic nerve) that affects hearing and balance. But diagnostic testing was normal.

However, a Western blot test and spinal tap revealed the patient was positive for Lyme disease. He was treated with a 3-week course of oral doxycycline, but his dizziness and gait problems persisted.

The patient did not receive any additional oral or intravenous antibiotics. Instead, he was referred to a Balance Disorders Unit for vestibular evaluation.

“Upon his examination, the patient presented with severe gait disturbance and imbalance,” the authors write.

Audiology tests indicated the man had mild to moderate sensory-neural hearing loss in both ears.

He underwent vestibular rehabilitation therapy for 10 consecutive days which significantly improved his balance. But his hearing loss and tinnitus remained.

“Unfortunately, the antibiotic therapy was not successful in decreasing hearing loss or tinnitus, suggesting permanent damage to the hearing nerve and cochlea,” write the authors.

Another study by Logigian et al. from Tufts University of Medicine found that 4 out of 27 patients with chronic neurologic Lyme disease presented with hearing loss and tinnitus.2

Meanwhile, a study in Poland revealed that 162 out of 216 patients with tick-borne diseases had otolaryngological (ear, nose, throat) symptoms.

“The most common complaint was tinnitus (76.5%) accompanied by vertigo and dizziness (53.7%), headache (39%), and unilateral sensorineural hearing loss (16.7%).”3

The following questions are discussed in this episode:

  1. Initially, doctors suspected vestibular schwannoma. Can you explain this condition and why it was considered as a possible diagnosis?
  2. The patient was tested for Lyme disease. His symptoms were not typical for Lyme, so why was testing ordered?
  3. Would more than a three-week course of doxycycline have helped resolve the man’s tinnitus and hearing loss?
  4. How common is hearing loss, vertigo, tinnitus, and gait impairment in Lyme disease?
  5. What are other causes of tinnitus and hearing loss?
  6. Why was the patient referred to a balance disorder unit and was his treatment successful?
  7. There have been several cases of hearing loss reported in the literature. Can you discuss the Tufts University and Poland studies featured in one of your blogs?
    Thanks for listening to another Inside Lyme Podcast. You can read more about these cases in my show notes and on my website As always, it is your likes, comments, reviews, and shares that help spread the word about Lyme disease. Until next time on Inside Lyme.

Please remember that the advice given is general and not intended as specific advice as to any particular patient. If you require specific advice, then please seek that advice from an experienced professional.

Inside Lyme Podcast Series

This Inside Lyme case series will be discussed on my Facebook and made available on podcast and YouTube.  As always, it is your likes, comments, and shares that help spread the word about this series and our work. If you can, please leave a review on iTunes or wherever else you get your podcasts.

  1. Jozefowicz-Korczynska M, Zamyslowska-Szmytke E, Piekarska A, Rosiak O. Vertigo and Severe Balance Instability as Symptoms of Lyme Disease-Literature Review and Case Report. Front Neurol. 2019 Nov 12;10:1172.
  2. Logigian EL, Kaplan RF, Steere AC. Chronic neurologic manifestations of Lyme disease. N Engl J Med. 1990;323(21):1438-1444.
  3. Sowula K, Skladzien J, Szaleniec J, Gawlik J. Otolaryngological symptoms in patients treated for tick-borne diseases. Otolaryngol Pol. 2018;72(1):30-34.


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Lyme & Hearing Loss  by David Michael Conner

Audiologist: “There’s a huge connection” between Lyme disease and profound hearing loss.


Tracy Murphy, Au.D., a member of the American Academy of Audiology Board of Directors

In September, I was contacted by a representative of the American Academy of Audiology, who wrote that the AAA “is working on educating the public of the many factors that can contribute to hearing loss and the seriousness of that loss.” The message recounted the story of Teresa Jennings, who was diagnosed with Lyme disease in 2011. “As if chronic fatigue and other Lyme symptoms were not enough, within a year and a half after her diagnosis, her hearing in both ears began to severely decline.” Her story continues:

“Jennings started treatment at a clinic in Washington, D.C. where she traveled from Illinois every three months for medical care. When her hearing first began to decline, she saw several audiologists for hearing aids but the cost was not affordable so she went to a large, national big-box discount store and purchased hearing aids.

“After wearing the hearing aids but struggling to hear sufficiently, Jennings finally decided to again see an audiologist in 2015 and she found one in Highland Park, Ill. She is the executive director of the Barrington Park District in Barrington, Ill., where she has been since 1992. Her hearing loss was having a serious impact on her work and her confidence. She was also starting to experience depression. The Highland Park audiologist was willing to work with Jennings on a payment plan. Because her Lyme medical expenses were so high and she’d met her deductible, her insurance covered some of the cost. With this financial assistance and flexibility, Jennings purchased hearing aids and suddenly realized the tremendous difference—she could actually hear! She took out a loan to pay off the balance.”

Tracy Murphy, AuD, is an Illinois-based clinical audiologist who works with North Shore Audio-Vestibular Lab and a member of the American Academy of Audiology Board of Directors. Murphy is the audiologist who treated Jennings.

Murphy referred Jennings to an ear, nose and throat (ENT) specialist, who ordered an MRI to rule out a brain tumor or other brain-based cause of hearing loss. “Since the hearing loss was so rapid, which is unusual, we just wanted to rule out other causes,” Murphy explained in an email. “The MRI was negative and it was determined that Jennings had neurological Lyme.”

“Many Lyme patients lose their hearing from the disease,” Murphy said. “Teresa’s hearing loss was severe to profound.”

I spoke with Murphy by phone in September to discuss her knowledge of Lyme-related hearing loss.

“There’s a huge connection,” Murphy said. “And one thing we say in our practice is, ‘if we’ve seen one patient with Lyme disease, then we’ve seen one patient with Lyme disease.’ There is no template to the disease. Especially if it goes untreated for a long period of time, there’s no way to know how it’s going to affect somebody,” Murphy said.

I explained my personal experience, beginning with moderate fluctuating hearing loss in my left ear shortly after I was treated for Lyme disease at age 19, and its progression to profound, total loss of hearing, often accompanied by loud tinnitus and ultimately by vertigo attacks and a diagnosis of Meniere’s disease.

“Some research shows or suggests an association between susceptibility for autoimmune issues in reaction to Lyme disease. I don’t know how hard and fast that stands, but it is something that’s talked about. So there’s that question. As far as hearing loss, it could be anything. It could be asymmetric—in your case, it was on one ear, it was unilateral. It can fluctuate. Vertigo can certainly be a symptom. It can affect every system in your body, not just hearing loss. It’s really a frightening disease from a global standpoint in terms of what it can do to your body. And the deer population growing, I think it’s becoming much more prevalent. Did you have that bull’s eye target, that red rash, when you were diagnosed with Lyme disease?”

“I did,” I told her. “I’m 39 years old now. When I was first diagnosed, I was 19. I don’t actually have much of a memory about it, but my mother tells me that I had ‘a really bad flu.’ She took me to the doctor, and the doctor called her into the exam room and said, ‘I want you to look at this rash on his back. That’s Lyme disease.’ So that stuck out in her mind because she thought it sounded so exotic. So I was kind of quote-unquote fortunate in that I did have a rash and so the first diagnosis was easy and definite.”

Since I was diagnosed with Meniere’s disease—a progressive, irreversible hearing disorder—and then recovered my hearing and experienced no further vertigo episodes following antibiotic treatment for Lyme disease, I wondered whether audiologist pay attention to non-hearing-related symptoms that co-occur among their patients.

“Yeah,” she said emphatically. “An audiologist has a huge responsibility to draw that information out. Part of how we approach hearing loss is as a symptom of something else going on. My personal opinion is that people are too often diagnosed with something like Meniere’s disease or Meniere’s syndrome when that really probably isn’t the case, but I think it’s easy for physicians to want to find an answer and lump patients into a category so they can treat them. There’s a responsibility on the patient no matter what specialist they’re seeing to be an advocate for themselves and report the symptoms they’re having, but every healthcare professional including an audiologist has a huge responsibility to take a very thorough case history and put those pieces together. Because when you’ve got flu, malaise, headache, fever—you may not have the rash—audiologists are aware of Lyme disease and have a responsibility to refer elsewhere, especially with the hearing loss. And not just with Lyme disease. With any pathology that is found.”

What about, I asked her, a patient like me who had a wide array of other health problems? I have always been anxious filling out medical intake forms because I know through experience that many doctors react to seeing so many unrelated boxes checked—neurological problems, anxiety and depression, rashes, allergies, etc.—by assuming that their patient is a hypochondriac. I’ve been asked by more than one doctor, for example, why I wrote down neurological symptoms on my intake form when I was not at a neurologist’s office. “Because,” I told these doctors, “your forms specifically ask for this information and I don’t like to lie.” I’ve also been asked by a neurologist why I mentioned joint pain and rashes, when that’s not his specialty. Same answer. “Because you told me to tell you all of the life-affecting symptoms I have had in the past few years, and those have affected my life. If you only want the neurological ones, that’s fine, but you didn’t specify that and I thought the others might be relevant.”

So I asked Murphy: When you see tons of boxes checked on an intake form, do you sometimes see this as a “trouble” patient or a potential hypochondriac?

“Hmm,” she said. “That’s a really good question.”

I was a little afraid of what might follow, but it sounded like it was going to be forthright.

“I guess,” she said, in 24 years of practice, I’ve never witnessed a patient that I believed was a hypochondriac. Your symptoms are your reality, and part of my job as an audiologist when you come to me and you have this list of symptoms is to figure out why you’re feeling the way you are and to get you to the people who can help figure it out. In the case of Lyme disease, what I find unfortunate is that there’s a blood test that can help diagnose it. And I’m not a treating physician, I’m not an MD, but I would think that for a physician lab work would be the first thing to do.* I think Lyme is often overlooked or easily dismissed. And your story is a perfect example. You need to be your own advocate. I’m sure you have your medical history documented pretty thoroughly in terms of when symptoms started and all of that. Nobody can argue with the fluctuating hearing loss. Nobody can argue with all of these neurologic symptoms, and these are the patients I love to work with because I want to help find an answer to what’s going on. So you can be persistent, and if any provider doesn’t seem to be hearing what you’re saying, then you need to see a different provider.

An Important Sidebar About Lyme Disease Blood Tests

As discussed in this article, the American Academy of Pediatrics recommends not ordering Lyme disease blood tests for patients who have been bitten by ticks known to cause Lyme disease unless they display facial (Bell’s) palsy. In this Healio article that followed the aforementioned one, Eugene Shapiro, an infectious disease specialist and Healio editorial board member, supported the AAP’s recommendation, stating that Lyme disease blood tests “done early generally will not yield positive results.” Shapiro is one of seven infectious disease specialists involved in a recent federal antitrust lawsuit filed on behalf of 28 patients who claim, according to the legal publication Courthouse News, that “health insurers are denying coverage with bogus guidelines established by their paid consultants, who falsely say the disease can always be cured with a month of antibiotics. The suit specifically alleges that Shapiro and others “were paid large sums of money by the Insurance Defendants in consulting fees, in expert witness fees, and to review, and deny, insurance coverage claims related to Lyme disease.” This allegation echoes a 2014 act of Canadian parliament that claims “the current guidelines in Canada are based on those in the United States and are so restrictive as to severely limit the diagnosis of acute Lyme disease and deny the existence of continuing infection, thus abandoning sick people with a treatable illness.”

The Lyme Disease Association further alleges that Shapiro is “on the payroll of major insurance companies to formulate Lyme disease policy,” and that “His employer, Yale University, invented the OspA vaccine technology in use by SmithKline Beecham and looks to it as a significant revenue source. In the December 2000 issue of Elle magazine, Shapiro called Lyme disease a magnet for hypochondriacs, say, ‘People would rather say, ‘I think I have Lyme disease’ than ‘I’m getting old and tired.’” In contrast to the 2000 quote, Shaprio told Healio that “I don’t think the vast majority, if any, of these patients are faking [their symptoms].”

Shapiro is a co-author of the Infectious Diseases Society of America’s clinical practice guidelines for Lyme disease, anaplasmosis, and babesiosis, which are currently endorsed by the U.S. Centers for Disease Control and Prevention despite having been removed from the federal National Guidelines Clearinghouse last year for failing to comply with federal regulations, which require that guidelines be reviewed against current science at least every five years. The IDSA guidelines were last reviewed in 2006, following an antitrust investigation into the guidelines by the Attorney General of Connecticut, which found violations including “significant procedural deficiencies related to the IDSA’s development of its 2006 Guidelines’, and found that the panel and the IDSA failed to ensure that the guideline development comported with due process, as required by antitrust law when persons (or their association) involved in standard setting have an economic interest in the outcome,” according to Antitrust Healthcare Chronicle. The IDSA guidelines remain unlisted from the National Guidelines Clearinghouse as they continue to undergo review. Clinical practice guidelines for tickborne illnesses from the International Lyme and Associated Diseases Society (ILADS) are the only guidelines accepted into the federal National Guidelines Clearinghouse for the treatment of Lyme disease at this time; however, the CDC does not acknowledge these, preferring the outdated 2006 IDSA guidelines.

End of Tangent

Since Murphy mentioned blood tests, I asked whether she was aware of the two-tiered Lyme disease blood tests’ notorious shortcomings. Varying studies have shown the sensitivity of the two-tiered testing process recommended by the CDC to be between 18% and 67% sensitive—meaning that many patients who live with Lyme disease will receive false negative test results. Virginia and Maryland, states profoundly affected by Lyme disease, have passed laws requiring physicians to inform patients about the insensitivity of the blood tests as a result of advocacy by the National Capital Area Lyme Disease Association, or NatCapLyme.

“That I did not know,” Murphy said. “In my job, I would refer you to have a physician order it.”

I asked Murphy how commonly she sees Lyme disease patients in Illinois. “I don’t see it that often in practice,” she said. “We don’t see it as extensively as in some other parts of the U.S. But we have a handful of patients that we’ve treated.” I had recently met someone who lives in a part of the country where Lyme disease is not thought to be common, and she was told by multiple doctors that she can’t have Lyme disease because, the doctors said, “we don’t have it here.” She thought she may have acquired it during travel. “Oh,” Murphy said. “It’s everywhere.”

Just a few days ago, on November 19, the CDC issued a report cautioning healthcare professionals and the public that despite CDC surveillance maps that suggest Lyme disease primarily affects the United States east coast and Great Lakes region, “clinical suspicion of Lyme disease in a patient should be based on local experience rather than incidence cutoffs used for surveillance purposes,” because Lyme disease has begun to “emerge in neighboring states.” In other worse, Lyme disease may be contracted even in areas where it is thought to be uncommon. The Bay Area Lyme Foundation has discussed how the CDC’s problematic geography-dependent case definition makes life difficult for Lyme disease patients and the doctors who treat them in states such as California. Author Amy Tan (The Joy Luck Club) has been outspoken about her experiences with Lyme disease, including that “the doctor said it was impossible for me to get Lyme in California.”

Since my hearing loss came and went for years before becoming generally poor with fluctuating-volume tinnitus, I wondered whether hearing loss can be related to seasonal allergies in any way, or whether it might come and go with seasons for any other reason.

“That’s a hard question to answer,” Murphy said. “I’ll answer it the best I can.”

“There are people who have hearing loss that fluctuates, but they don’t have their hearing tested seasonally to see if it fluctuates seasonally or not. So if someone says that they have fluctuating hearing loss, I want to see it documented that it’s fluctuating. So that’s a tough one. There are things seasonally that can affect one’s perception of one’s hearing, such as allergies that causes a clogged sense of hearing. That’s usually a qualitative change in hearing and not necessarily a quantitative change in hearing, which is again why I want to see the test results.”

“But,” Murphy said, “there’s a large group of people who can have fluctuating hearing loss. And whether it fluctuates on a seasonal basis or a monthly basis, my suspicion when I hear that—and you might find this interesting—is that it typically comes from some sort of an autoimmune process. And I find that link between autoimmune susceptibility and hearing loss interesting as well. And the link between autoimmune and Lyme disease, hearing loss associated with Lyme disease can fluctuate. It can also fluctuate with Meniere’s disease, and so I can see why they wanted to put you into that category. But that’s why that thorough history going back as far as you can can be critical. I don’t often see hearing loss where it’s a sensory neuro-hearing loss seasonally with someone unless it’s someone who has documented fluctuating hearing loss that changes with barometric pressure. But that would fluctuate anytime there was a change in barometric pressure and not just spring.”

I told Murphy that her suggestion of an autoimmune connection was particularly interesting. I was diagnosed with mast cell activation syndrome/disorder (MCAS/MCAD), which can be associated with Lyme disease. Treatment with a combination of H1 and H2 antihistamines has had a profound positive net effect on many of my symptoms. Doctors such as Elena Frid, a neurologist and neurophysiologist who treats Lyme patients, believe that autoimmune illness often is a major component of Lyme disease.

Autoimmune disease as a component of hearing loss “is being introduced” to the audiology field “in terms of what research is being done,” Murphy said. “Audiologists are diagnosticians for the most part, and we work on the rehabilitation of patients. But in terms of medical treatments and studies involved in what can help or hinder improvement—we might be involved in the testing to see if it’s improved. I can’t answer how much is going on in terms of Lyme disease specifically. We were just at a regional conference in Chicago and one of the ENTs that I work with presented some case studies and specifically highlighted Lyme disease and its effects on hearing. And we are making audiologists aware of that as an issue, and it does have to be ongoing and pervasive.”

Murphy wasn’t aware of much of the controversy surrounding Lyme disease, which in many cases lead doctors to dismiss patients who have been treated for Lyme disease and then never recover. These patients are determined to have “post-treatment Lyme disease syndrome,” which according to the CDC occurs after the infection has been eradicated for unknown reasons. Among recommendations for patients, the CDC recommends that patients “talk with a counselor who can help you find ways of managing your life during this difficult time.” As a result of this sort of language, many healthcare providers infer that these patients may be hypochondriacs, may be attention seeking, or may be mentally ill and in need of psychiatric interventions. Lyme disease specialists, on the other hand, cite hundreds of studies documenting Lyme disease-causing bacteria that persist in laboratory settings following antibiotic treatment, and believe that many patients require longer-term and different antibiotics to fully cure their infections, and call for increased federal research into the nature of Lyme disease and how to treat it.

Murphy said that Lyme patients who are not physically ill “hasn’t been my experience…but that underscores my comments at the beginning of this conversation. If you’ve treated one patient with Lyme, you’ve treated one patient with Lyme. It is not a cookie-cutter disease in terms of symptoms, in terms of how it affects one’s life, in terms of how pervasive the sequalae of that disease will be for an individual. Ideally, you’re going to take your antibiotics and it’s going to go away before that later-stage diagnosis when it’s going to have those neurologic symptoms, cardiac symptoms, pain and all of that. But you can’t cookie-cut any diagnosis because one thing I’ve learned is no two patients are the same, including how they respond to treatment. I can take that down to a hearing loss level. Someone who has age-related hearing loss is going to respond very differently.”

In my case, I was diagnosed with Meniere’s disease and told by an ear, nose and throat specialist that my hearing loss was progressive, potentially to the point of total deafness, and likely irreversible. The hearing in my left ear has been almost totally restored following antibiotic treatment for Lyme, and I haven’t had a single vertigo attack since then. Hearing loss was among the least severe and therefore among the least of my health-related concerns when I was being ravaged by Lyme disease symptoms.

Murphy underscored the importance of not neglecting auditory health, however. “There are correlations,” she said,” between hearing loss and early onset dementia.”

Whether or not you have any tickborne illness, if you have significant hearing loss or balance control problems, visit the American Academy of Audiology website at and click “find an audiologist.”