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.”
“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 audiology.org and click “find an audiologist.”
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