Thanks to the medical records of my deceased dermatologist, I now know that I got the disease on the day I was born.
“He wrote in August of 1997 that he did not see tick, but that he had a red bull’s-eye rash on his chest.”
“I had no idea about the diseases of ticks or the symptoms of the disease. My dermatologist didn’t mention anything about the rash despite noting it. He gave me a shot of a medicine and sent me away.”
I was 67 years old when I learned I had the disease. I had been suffering from a long list of symptoms for 12 years, most of which I had attributed to aging.
Many doctors are not trained to recognize the different symptoms of the disease, which can mimic other illnesses. Many people with undiagnosed Lyme go to doctors and get conflicting answers.
Organizations like ILADS (the International Lyme and Associated Diseases Society) can help you locate a Lyme-aware healthcare professional in your area.
“My first piece of advice to anyone who has any symptoms of Lyme disease: Find a Lyme-aware doctor.”
Lyme disease is caused by the bite of a black-legged tick infected with Borrelia burgdorferi bacteria. The main host for these ticks is the white-footed mouse, a rodent native to North America. As they grow, the ticks are often picked up by other animals, especially deer.
There are at least 48 states with cases of the disease.
When ticks attach to your skin, they can transmit diseases like Lyme. The tick can transmit the disease through saliva. The diverse symptoms are due to the spread of thebacteria in the bloodstream.
Borrelia burgdorferi are spiral-shaped bacteria known as spirochetes. Spirochetes are clever; they can “hide” from your immune system, making them particularly difficult to fight off. The bacteria can also hide during treatment and persist even after an initial course of antibiotics.
My skin ailments began as unexplained. I have had scurvy since I was an infant and my skin is sensitive to insect bites and other irritants.
The red bumps on my limbs and trunk kept me up at night. The condition called PLEVA is associated with infections like the one in the picture.
I have developed a skin condition on my face. There were red marks on my arms and legs. I would get huge, ugly bruise on my arms and legs when I brushed up against something.
Parapsoriasis is a condition that can be a sign of T-cell lymphoma. The oncologist proposed UVB light treatments for me. I found a used UVB light machine that I could use at home.
I developed a number of joint and muscle problems. I developed a foot problem in my heels. I was referred to physical therapy by a foot doctor who gave me a foot boot to wear at night.
My knees became sore and I had a problem with my hips. An orthopedist recommended physical therapy and shots for the bones.
I had terrible pains up and down my shins, but the orthopedist told me there was nothing to worry about.
I developed arthritis in my hands. I lost bone in my thumbs and some of my fingers. The doctor told me that arthritis in the hands was normal at my age.
My feet and toes had problems. My shoes became uncomfortable. I began wearing specialty shoes.
“The cognitive symptoms bothered me the most. I had trouble remembering things. I couldn’t remember what I went to buy at the big box store.”
I had to plan out the route when I went to a store or doctor. I had periods of depression as well.
“I couldn’t figure out what was happening.”
I felt as though I was in the Yiddish song “A Miller’s Tears” — where the lyrics (translated) are: “The wheels keep turning, the years keep going, and I get old, and gray, and exhausted.”
I posted it on my desktop because I liked listening to it and I thought it described me.
“The breakthrough came when my husband’s doctor mentioned that he might have had a case of Lyme. He did not see a tick bite, but he did walk daily in a farm area where deer were free to roam.”
His symptoms were fatigue, knee pain, light sensitivity, and irritability. He found an excellent doctor in our area with the help of ILADS.
My husband concluded that I probably had the disease. I saw the doctor and began treatment after reading over the research material.
Later, a test by the specialty laboratory in California, IGeneX, proved positive for Lyme.
The initial diagnosis was based on the combination of symptoms I had, despite the earlier test that came back negative. The test for the antibodies to the disease is called the ELISA.
In my opinion, the ELISA test is often unreliable. Although this is the test recommended by the CDC, it emphasizes specificity, according to ILADS, at the expense of sensitivity.
The IGeneX test is a more reliable measure of Lyme infection, but even then, as ILADS notes, “… laboratory results can support the diagnosis but cannot, in isolation, make or rule out the diagnosis of Lyme disease.”
The doctor started treatment with the antibiotics clarithromycin and flagyl in August.
I recommend keeping a Lyme log. I used it to document symptoms.
The doctor used one regimen of antibiotics and another regimen after stopping it.
She prescribed antibiotics in stages. I took a lot of drugs.
“MSM and vitamins B12 and D were included in the treatment. I also took herbal remedies made with cat’s claw and banderol, which have antibacterial properties.”
“The ugly bruise faded and didn’t return, for example, for some of my symptoms. Other symptoms, like fatigue, joint and limb pain, and hand stiffness, continued on.”
After 6 months of treatment, my husband was much improved after his initial infections. It would take years before I could stop the antibiotics.
I used a cane for balance.
I feel lucky. I responded well to the antibiotics after my diagnosis. I had Medicare insurance that covered prescriptions, physical therapy, and testing, at the time of my diagnosis.
“When I first got on the exercise bike at physical therapy, I could barely push the pedals around.”
Physical therapy helped greatly.
It seemed impossible to exercise because of the pains and aches. I used to walk a lot, but I barely did it anymore.
I used a rebounder as part of the recovery process, and it was a small trampoline that I jiggled on. I moved to a jogging motion on the rebounder. I liked it because I could watch a film or read a book while moving.
“I saw an ad for a 30-minute women’s circuit of resistance training that works every muscle group. I began to regain some muscle after using it.”
I found a good doctor in Massachusetts who continued to treat me with antibiotics until 2019. I was lucky to find a doctor who was involved with the research on the disease.
I was still a little fuzzy when I moved from Virginia to Massachusetts, and I lacked confidence in my ability to complete tasks. It put a lot of stress on my husband.
I continued physical therapy here and became significantly stronger. When I first got on the exercise bike at physical therapy, I could barely push the pedals around. Very slowly I worked my way up to 15 minutes and more.
I think I’m now free of Lyme, but I still have remnants of the damage. My fingers are crooked, I wear hand splints to stabilize my thumbs, and my grip and dexterity are weak. I still have constant tinnitus (sometimes very bad), and my left leg gives me problems, but I’ve definitely improved. Antibiotics work miracles!
I wonder how I could have lived for 12 years with no explanation. What was I thinking? Was I oblivious?
I was a writer and editor and I was a busy person.
My mom lived with us for a year before I was diagnosed with the disease. I wanted to be there for her, cook, and visit her daily in the hospital, so I took her to medical appointments and visited her daily.
“I didn’t want her to worry about me. My own health seemed to be more important than my own.”
The doctors I consulted for different symptoms were not clued up.
“Why did my experienced dermatologist not mention the tick and the bull’s eye rash when he asked about it? His carelessness seems to be inexcusable.”
I am amazed that I made it through the day. My symptoms make me sound like a sick old lady.
I am certain that without antibiotics, I would be in a wheelchair. Who knows what my mental state would have been.
It was frustrating to hear from doctors who questioned the existence of chronic Lyme. Doctors who advise 20 days of antibiotics and you will be fine. People who tell people that they have a mental health problem.
The medical profession has a lot of ignorant people. My own saga has given me a deep skepticism about modern medicine. Doctors are not people. They make mistakes and have prejudices.
If you have any Lyme symptoms, make sure you get competent treatment and don’t settle for a physician who minimizes your concerns.
New treatments for long-term Lyme are available, and research is improving. It is easier to becomeliterate about the disease now that there are films and autobiographical accounts.
You have to becomeliterate to get well.
“You have to be able to advocate for yourself and not be intimidated by someone with an advanced degree. If I find out that a primary care physician or a specialist I have been referred to is playing down the illness, I won’t go back to them.”
“I don’t want others to go through the same experience I did, because I know I’m repeating myself.”
- Find a Lyme-literate doctor.
- Become Lyme literate, watch the Lyme films, and follow the Lyme advocacy groups.
- “Keep a record of how you feel, your medication, and your doctor’s visits.”
- “Don’t accept a diagnosis that says your symptoms are just age or in your head, and trust your own judgement. It is your life at stake.”
Someone with a disease wrote an essay. It has not been examined by a doctor.
Marjorie Hecht is a long time magazine editor and writer. She has a variety of interests, including being a reporter at the United Nations and covering politics in Washington, D.C.