In the following months, I developed many new symptoms, including intrusive tinnitus, which caused a constant whooshing sound in my deaf ear, varying between the sound of a jet engine and meat simmering in a frying pan. My tinnitus was so loud that I often struggled to hear conversations, even in a quiet room. The sound of chewing my own food was so loud to me that it deafened conversations. Some sounds, such as shutting a cupboard or running a faucet, seemed so intrusive that I needed to block my ears. Yet I could still hear nothing out of my left ear. Another frightening symptom I had at the time was that it felt as though my brain was vibrating and being squeezed. Sometimes the head pressure was so intense, I wondered if I might have a brain tumor or a stroke. For many days, it felt like my head was too heavy for my shoulders, making me feel like one of those bobble head dolls. As a result, I was exhausted most days just from trying to keep my head up. I also remember having strange bug crawling sensations on my face and all over my skull. I felt like I was losing my mind. I was working in a hospital as a clinical social worker at the time and my nervous system seemed to go into overdrive while I did my best to sort out sounds challenged by multiple conversations and background noises. I remember getting into my car at the end of my workday and bursting into tears from mental exhaustion. Months went by and I tried my best to adapt to these new symptoms. My ENT (ear, nose and throat doctor) eventually did further testing which showed that I had lost 50% of vestibular nerve functioning on the same side as my hearing loss. This might have explained why I often felt as though I was walking on a boat over the previous months. He diagnosed me with Atypical Meniere’s Disease, an autoimmune illness with symptoms of hearing loss, vertigo, and tinnitus. I joined an online Meniere’s Disease support group and noticed that most others in the group did not have the strange symptoms that I experienced. One of the members eventually asked me if I had ever been tested for Lyme disease and recommended, I see a Lyme specialist in the Boston area that he had seen – as some of our symptoms overlapped. He explained to me that the standard testing for Lyme Disease is less than 50% accurate and that many Lyme specialists understand this and have ways of diagnosing with additional testing and looking at various symptoms and histories of patients. I made an appointment to see a lyme specialist (called a LLMD or Lyme Literate MD) and I tested positive for Lyme disease with the tests this doctor ordered. My new LLMD told me that with treatment, she could not guarantee that my hearing would return, but she strongly felt that over time, many of my odd neurological symptoms would improve. She warned me that I might feel worse before I felt better, and she was right. Lyme disease is caused by spirochetes that invade the body much like the bacteria that cause syphilis. If not treated early, Lyme disease can affect any body organ, including the brain and nervous system, muscles, joints and the heart. When treated with antibiotics, there often is something called a herxheimer reaction caused by the killing of the spirochetes that causes a toxin to be flushed out of your system, creating unpleasant symptoms. I did experience many unpleasant symptoms while on antibiotics, but over time I started to notice some improvement. It took years of oral and intravenous antibiotics for this to happen, unfortunately. This could have been avoided if we had a better system of detecting Lyme disease at early onset with mainstream doctors. The Lyme doctor took a detailed history, looking at my exposure to ticks. I had been an avid gardener and remembered a few untreated tick bites through the years. I recalled having a strange rash about 7 years before, followed by summer flu with a mild relapsing fever that waxed and waned for several weeks. At the time, I saw my doctor, who tested me for Lyme disease, which was negative, so I was never treated with antibiotics. She thought it was just a virus that would clear on its own. Soon after that fever, I developed sleep problems and migrating joint pain, which lasted for years. My doctor attributed these symptoms to perimenopause and osteoarthritis. It is interesting to note that my joint pain did clear up after I was treated with antibiotics for Lyme disease. My neurological symptoms (head vibrating, odd sensations, etc.) took longer to improve and although they did not all go away, many of them are more tolerable and less noticeable today than they were in those earlier years. I still have good days and bad days, which are unpredictable. I learned that there is a strong political divide in the medical community about the existence and treatment of chronic Lyme disease. Some of those doctors who sit on the panel of the IDSA (Infectious Disease Society of America) who determine guidelines for diagnosing and treating Lyme disease have conflicts of interest with various pharmaceutical and vaccine companies. This is one of the many reasons that the guidelines have not been changed through the years despite science that supports revising them. Following years of aggressive treatment with oral and intravenous antibiotics, I have since been trying to support my immune system with antimicrobial herbs and many expensive, alternative treatments that are not all approved by the FDA. I have learned to live with many odd neurological symptoms that are invisible to others and my hearing unfortunately did not return. The emotional and financial toll on Lyme patients and their families is severe. The IDSA needs to revise their guidelines for diagnosing and properly treating Lyme disease so others will not have to go through this nightmare. I no longer garden the way I used to or hike in the woods. I cannot go to a concert or play the piano without wearing ear plugs. I try to avoid crowded and noisy settings. However, I will never give up and I will continue to fight for improved standards of care for those stricken with this cruel disease. I hope you will join me in this fight. Debbie Magnus |
