This article is part of Health's new series, Misdiagnosed, featuring stories from real women who have had their medical symptoms dismissed or wrongly diagnosed.
November 2, 2016, was a beautiful fall day in New England, and it was the perfect opportunity to take my 5-year-old son and his friend on a nature walk in the woods surrounding our yard in Massachusetts. The walk was short-lived. My son's friend stumbled over a tree root, which prompted us to turn back to our home. But our time outside was long enough to pose an unexpected risk.
The following evening, my husband found a tick attached to my back. He removed the tick as carefully as possible and applied antibiotic ointment. What I knew then about Lyme disease told me that I would develop a bulls-eye rash or flu-like symptoms if the tick actually transmitted the illness to me. Neither of these signs appeared, so I assumed I was fine. That flawed assumption drastically changed my life.
Assaulted by symptoms
Seven weeks later after the new year, I started noticing frightening changes in my health. In a work meeting one day (I'm a kitchen and bath designer), I was suddenly overcome by shortness of breath and crushing chest pain. I visited my primary care physician. After a normal EKG and chest X-ray, I was diagnosed with heartburn and given a prescription for heartburn meds. I had endured heartburn with my two pregnancies, and it felt nothing like this. The drugs provided no relief, yet all of my bloodwork was normal, so my doctor then deemed it a virus that would soon pass. It did not.
A few days later, while remembering the tick from November, my mother recommended that I ask for a Lyme disease test. My blood was drawn, and two days later, it came back negative. I had no reason to doubt my doctor or the test results. With Lyme ruled out, I moved on to determine what was happening to my body.
Searching for a diagnosis
The next few months brought an onslaught of additional symptoms and medical appointments with various specialists. First, a rheumatologist told me that the chest pain I was experiencing was costochondritis, or inflammation of the cartilage of the rib cage.
A spine specialist did X-rays and MRIs of my spine, as my neck had become increasingly stiff with very limited mobility, along with nonstop cracking and popping. A neurologist concluded that I had carpal tunnel syndrome, which would explain the onset of increasing numbness and tingling in my hands. But why was I having these issues I when hadn't done any of the repetitive wrist motions known to cause carpal tunnel inflammation?
Because I continued to struggle with shortness of breath, a pulmonologist assessed my lungs. Those tests came back normal. Once again, I was told that most likely costochondritis was the cause of my breathing issues. How desperately I wanted all of these pains to go away, yet the diagnoses seemed almost like guesses, and the symptoms were not fading.
Managing all of these random symptoms was incredibly frustrating. Each visit with my PCP about a new symptom got me nowhere. At one point, she even told me I should try meditation. I was shocked! I had been her patient for over a decade and was perfectly healthy the entire time save for a bout of mastitis while breastfeeding. Now I had all of these symptoms and she was suggesting that they were psychosomatic. I was beginning to feel hopeless. How could I have gone from being 100% healthy to having all of these issues?
By the time May rolled around, I was navigating all of the existing symptoms and dealing with a new one: TMJ. My jaw throbbed nonstop. I was given a referral for physical therapy, and after an extensive initial intake by a highly regarded PT, his feedback was startling. The stiffness of my neck, coupled with my lack of strength and overall pain level, led him to say, “In all my years of experience, for me to see someone in your condition, you were either in a head-on collision, or bitten by a tick."
I explained that I had been bitten by a tick, but that my tests were negative. He encouraged me to ask for additional testing.
Could it be Lyme?
As soon as I left his office, I began researching Lyme tests, specifically their accuracy—or lack thereof. Moreover, I read many articles stating that a Lyme diagnosis should be a clinical one, certainly not based solely upon a blood test.
I returned to my primary care doctor, requesting to see her in-office infectious disease specialist. My husband came with me to the appointment, also desperate to find an answer. When the specialist entered the room, I explained that I had been very unwell and believed it was related to a tick bite. He looked me up and down and replied, "You don’t look unwell." My husband and I were both shocked but pushed for another Lyme test. Once again it was negative.
In June, six months after the start of my symptoms, things went from bad to worse. The entire right side of my face went numb. It felt like I had gotten a Novocain injection. If I touched the skin, it felt strange. I also began having random episodes of leg numbness, which was causing me to stumble. This happened while at Target with both my sons one day. I sat down in the middle of the aisle until I could stand, then clung to the shopping cart so that I could get the kids to the checkout and back to the car. This was a turning point for me. An accurate and meaningful diagnosis was now imperative.
Closing in on a correct diagnosis
My mother insisted that I see the chief of infectious disease in a prominent Boston hospital. On July 13, 2017, roughly seven months after this all started, we met with him, and he agreed that something unexpected was wrong. He felt that it could even be the start of multiple sclerosis or another autoimmune disease. He said he wanted to draw blood and run as many tests as he could think of for many different infections, autoimmune markers, and signs of inflammation.
He also said he was going to run a different type of Lyme test, called a Lyme C6 Peptide, one his experience dictated was more reliable than the ones I’d had already.
A week later, he called with the results: Everything was negative or normal, except the Lyme test, it was positive. I was thrilled at first, as he said a three-week course of the antibiotic doxycycline would cure me. He called in the prescription and I started it the next day.
I had no idea what to expect from treatment. I soon learned that with tick-borne infections, your symptoms become much worse during treatment: When you take antibiotics, an enormous number of infectious organisms die off, which causes an inflammatory response in your body. At the end of the course of doxy, my pain was much worse than it had been, and my facial numbness had turned into full-blown trigeminal neuralgia (chronic, searing pain due to inflammation of a cranial nerve). I couldn’t chew food or even speak comfortably because my facial and dental nerves were so inflamed. Then, all of my body pain worsened.
I went back to the infectious disease doctor in Boston at the end of the doxycycline course and reported my state to him. He offered me painkillers. He said I was cured and that all this arose from damage done by the infection, and that with time, it might improve. I was shocked. There was no way I could live this way. He insisted there was nothing else he could do for me. I was sicker than before and now in a desperate state.
With further reading and research, I learned about the huge controversy surrounding Lyme disease, and whether it exists in a chronic state. The CDC believes short-term antibiotic therapy is sufficient for treating Lyme, regardless of the amount of time a person went untreated. Alternatively, ILADS, the International Lyme and Associated Diseases Society, advocates for long-term treatment of tick-borne diseases—recognizing that persistent symptoms after a short course of antibiotics are not a sign of permanent damage, but ongoing infection.
Effective treatment for Lyme
This was all so confusing, and I wasn’t sure what to do or who could help me. My children and family were growing increasingly alarmed, as I could no longer hide the extent of my illness. The trigeminal neuralgia made eating impossible, and I soon lost 20 pounds on my already thin frame.
I found a local doctor who knew a lot about Lyme. She insisted we should do further testing and sent my blood to the Igenex lab in California, and to Armin Labs in Germany, both highly regarded for their accuracy in Lyme testing. All of my results were positive for Lyme. In October, my mother’s hairdresser connected us with one of her clients who had told of a similar Lyme experience. She said she had seen a Lyme-literate doctor, and with long-term, correctly targeted antibiotic therapy, she was now in remission and symptom-free.
In November, we met with that physician, Jeanne Hubbuch, MD. She went through all of my test results with me for an hour and a half and then looked at me and said "You’re fixable." She explained that the treatment process takes time, often years, and focuses on killing off the infectious organisms while also supporting the body on its path to healing.
Dr. Hubbuch immediately started me on daily injections of antibiotics as well as oral antibiotics. Once again, the introduction of each antimicrobial made symptoms grow worse, but then each symptom slowly started to fade away. I am now 18 months into treatment and have made significant gains. My trigeminal neuralgia is completely gone, as are some other symptoms.
How to protect yourself
Ticks are nature’s dirty needles—carrying countless different bacteria, viruses, and fungi. Getting a bulls-eye rash is like winning the lottery; many people do not develop it, and worse, some do not even notice the tick bite. This makes diagnosis even more complicated. Dr. Hubbuch recommends removing an attached tick and sending it for tick testing to determine which pathogens it is carrying. That way, you know what to treat should symptoms appear.
I had no idea that Lyme symptoms can be so varied and diverse. It is for this reason that Lyme is known as the “great imitator,” mimicking symptoms of diseases such as fibromyalgia, multiple sclerosis, and lupus, to name a few.
If you or someone you know has seemingly unrelated symptoms affecting a wide range of bodily processes, ask for a Lyme test, bearing in mind that a negative test does not mean you do not have Lyme. “This is when you need to see someone very well trained in differentiating what could be tick-borne illness from the myriad other things that can cause similar symptoms,” explains Dr. Hubbuch.
Moving forward
Lyme disease is often considered to be an invisible illness, but to myself and those close to me, this disease has been heartbreakingly tangible. Untreated Lyme has stolen two and a half years from me so far. My goal is to reach remission and live a symptom-free life. I now find comfort in taking the proper precautions to protect myself and my family. I’ll still roll in the grass with my kids and go for nature walks, but beforehand, we’ll apply bug spray, and afterward we’ll do head-to-toe tick checks. With tick-borne disease, prevention truly is the cure.
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