Shona Curley, with daughter Sophia Delmon, is coping with Lyme disease.
My story of getting and coping with late-stage Lyme disease—one of the fastest spreading, most debilitating, and least understood diseases in the nation.
In summer 2013, I got a tiny tick bite. The nymph (baby) tick was a western black legged tick, the size of a poppy seed. The more common dog ticks are much larger, and don’t carry Lyme disease—but I didn’t know about this distinction at the time.
The nymph tick lodged itself in my belly while I was reading a book, sitting on a patio in the sun on a little piece of property that my husband and I call our “Gypsy Camp” outside of Healdsburg. I absentmindedly ran my hand over my stomach, and felt the tick’s little tiny legs poking out. It hadn’t been on me long—it wasn’t at all engorged. From previous tick bites on my kids and our dog, I knew that if a tick has been drinking your blood, it swells up like an evil grape.
I pulled the tick out with a pair of tweezers, and called my medical provider, Kaiser.
“No need to save the tick,” the advice nurse told me over the phone. “It’s not our policy to test ticks for bacteria. Besides, a tick needs to be on you for over half an hour to transmit Lyme disease, and it is unlikely you would get Lyme disease from a nymph. Just call us if you develop a bull’s-eye rash.”
I had heard of this common skin reaction to a Lyme-infected tick bite; a red, circular rash that looks like a Target logo surrounding the bite, which will be red and raised as well.
Great! I thought to myself. I threw the interloper into the bushes. A rash never appeared.
I never dreamed this bite would devastate my health for the next five years and counting.
Over the next two years, my health slowly deteriorated. I caught more and more flus and colds. I chalked this up to the stress of raising two young kids and running my own Pilates studio full time. I took Sudafed and echinacea and kept going. But by early 2015, it was obvious something was wrong. I had persistent symptoms: ringing in my ears, dizziness, insomnia, an upset stomach. I stopped drinking lattes. I gave up bourbon. I stopped running and took up restorative yoga instead. But the symptoms steadily worsened.
By fall 2015, I was back at Kaiser, and I was scared. I remember starting to cry in the doctor’s office as I described how I felt. The doctor had no idea what was going on. I told her about my tick bite, and she tested me for antibodies to Lyme disease. The test came back negative. So, we struck Lyme from the list of possibilities. She ordered a battery of new tests, each for conditions more life threatening than the last. By the end of all of them, we had no information, and I just felt sicker. The doctor gave me a prescription for sleep medicine.
By summer 2016, I was so sick that I took a leave of absence from work. Making this choice was very hard for me, but my body left me with no other option. No doctor, naturopath, or acupuncturist had any idea what to do with me, and I saw quite a few. For no apparent reason, I was falling apart. I had a fever all the time, and my lungs were constantly congested. I was unbearably anxious. I wondered if I was dying.
During my leave of absence, I voraciously consumed information on diet and herbs to restore the gut and immune system. I lay in bed while my kids were in school, alternately sleeping and learning. I cut out all sugars, including dairy, fruit, and grains; made my own bone broth; and foraged for wild herbs—brewing them in the kitchen like a modern witch. It helped. After three months, my lungs were fine, my fever was gone, and I was able to go back to teaching Pilates part time, despite other lingering symptoms.
Over the next year, I functioned, but I wasn’t well. I developed noise sensitivity. My anxiety worsened. Fatigue and insomnia were constant problems. I kept searching for answers—combing the web, reading books, listening to “biohacker” podcasts, trying new doctors.
Partly by luck, and partly by following this trail of breadcrumbs, I found what is known as a Lyme literate medical doctor, or LLMD for short. LLMDs are certified physicians or naturopaths who specialize in treating patients with Lyme disease. But like the other acupuncturists and naturopaths I saw, treatment with this LLMD for Lyme disease was not covered by my insurance.
I told my LLMD, Dr. Mischa Grieder, at San Francisco Preventive Medical Group, about my baby tick bite and my negative test results through Kaiser. “Nymph ticks are actually quite likely to transmit Lyme disease,” he told me. “It can take less than an hour for the bacteria to infect you. Many people never get a bull’s-eye rash, and most people test negative for antibodies with the conventional medical test.”
Holy moly, I thought. So, every single piece of information I got from Kaiser was wrong.
We ran a $600 test (through IGeneX, a Palo Alto lab) that I paid for, and it came back positive. I finally had an answer, after two years of searching.
That was August 2017.
I now know almost too much about chronic neurological Lyme disease—my diagnosis. I know there is no cure. I know that treatment is expensive and long term. I know how hard it is to get to “remission” and that remission is not guaranteed to last.
I now have friends with Lyme disease who help me when I have a flare-up and feel terrified of facing the rest of my life with this disease. I have an amazing Lyme community online where we share information and tools to help ourselves through the days, months, and years. This community is a beautiful, affirming system of support for people whom modern medicine treats with at best ignorance, and at worst disdain.
I am sharing my story to help us all.
Like many people diagnosed with a mysterious chronic condition, I became an amateur expert about my diagnosis. I read books by LLMDs and herbalists, I combed the web for different treatment strategies, and I listened to podcasts interviewing the nation’s most prominent LLMDs and people working to heal their own infections. I subscribed to blogs posted by www.LymeDisease.org and www.BayAreaLyme.org—two nonprofits that regularly post updated information about all aspects of Lyme disease. All this information gave me power. It helped me feel I had some control over what was happening to me. I learned what Lyme disease is, the politics surrounding treatment, and all the various ways people are fighting Lyme.
Lyme first gained attention in the 1970s, when an epidemic of arthritis, mainly in children, spread throughout rural communities around Lyme, Conn. Thanks to the persistence of two determined moms who didn’t accept the diagnosis of arthritis at face value, researchers at Yale University discovered a previously unknown kind of spirochete in the tissues of the sick kids. Spirochetes are spiral-shaped bacteria, like microscopic coils. The disease caused by this spirochete was named Lyme after the town.
Though the incidence of Lyme disease is currently spreading quickly in the United States, Stephen Harrod Buhner, a well-known herbalist working with Lyme patients, writes in his book Healing Lyme that Lyme spirochetes have been on Earth much longer than humans and are found all over the world.
Technically, the Lyme spirochete is Borrelia burgdorferi. Lyme disease is passed to humans from deer tick bites: the western black legged tick on the West Coast and the eastern black legged tick on the East Coast. Deer ticks are found nationwide and mostly live in grass, wood piles, leaf litter, and on old, damp stonewalls. They carry many different strains of harmful bacteria, which they acquire through feeding on rodents. They also feed on birds, who help them travel and colonize new territories.
Borrelia burgdorferi is considered a “stealth pathogen,” which rarely kills its host. Instead, it works to disable its host’s immune system and settle in for a good long lunch.
According to my doctor and other LLMDs, if your immune system is hardy when a tick bites, you may fight off the bacteria and never develop Lyme disease. If, however, you are under stress (say, raising young kids and running a business) or your immune system is otherwise compromised, Lyme has an opening.
Once Lyme takes root in your body, chronic symptoms result, and the bacteria become very hard to kill. Stealth pathogens hide throughout the body, enclosing themselves in biofilms—protective layers that are nearly impenetrable to attack.
Another complication of Lyme disease is the common incidence of co-infections. Ticks don’t just carry one variety of harmful organism; in fact, they can carry multiple strains, some bacterial, some parasitic. According to www.LymeDisease.org, which advocates nationally for Lyme patients, more than 50 percent of Lyme patients have one co-infection, and 30 percent of patients carry two or more. The most common co-infections are babesia, a blood parasite, and the bacteria bartonella, erlichia, and anaplasma. I have both borrelia and babesia. These co-infections cause their own array of miserable symptoms and require their own treatments.
Right after a Lyme-infected tick bite, some people develop a bull’s-eye rash: a red ring around a raised bite. Sometimes the rash is accompanied by fever or flu-like symptoms. If a patient gets to a doctor at this point, a short course of oral antibiotics will be prescribed—and may work. However, many people—like me—never develop the rash or the flu.
Chronic Lyme is known as “the great imitator,” because it causes an assortment of symptoms. According to www.LymeDisease.org and the Bay Area Lyme Foundation, based in Portola Valley, the most common symptoms are chronic fatigue, fibromyalgia, and the feeling of a flu that won’t go away. Headaches and neck pain are frequent, as is arthritic pain in the joints. For some, the nerves are affected, causing numbness, loss of sensation, or nerve pain throughout the body.
When Lyme affects the brain, it’s known as neurological Lyme disease (which I have). According to my doctor and other LLMDs, people with neuro Lyme experience short-term memory problems, brain fog, confusion, and psychiatric disorders.
Lyme can affect the gut, causing irritable bowel symptoms and nausea. Hormones get thrown off balance. Almost everyone experiences sleep disturbances. Many people have heart palpitations, pain, or increased heart rate.
LLMDs agree that each person’s symptoms can be different, especially considering co-infections, and for treatment to be effective, it must be tailored to the patient. Dr. Bill Rawls, a physician who himself struggled with Lyme for 10 years, writes extensively about this on his blog at www.RawlsMD.com, as do www.LymeDisease.org and Stephen Harrod Buhner, who offers herbal protocols for each co-infection. I take his herbs for babesia as well as borrelia.
According to the Centers for Disease Control, whose estimates are considered conservative, 427,000 Americans contracted Lyme disease in 2017. This number is calculated by multiplying the number of reported cases by a factor of 10, because the CDC understands that Lyme is under diagnosed and therefore underreported. Even taking this into consideration, more Lyme cases were reported last year than any other year in history. The number is likely increasing due to climate change (ticks live longer in warmer weather).
There were more Lyme cases in 2017 than the number of new breast cancer patients and AIDS infections combined, according to Bay Area Lyme Foundation. But despite these alarming statistics, very little money is being spent on research. For example, Bay Area Lyme Foundation reports $57,960 is spent on research annually per AIDS patient, compared to $133 per Lyme patient.
One of the main reasons Lyme is so underreported is that you must meet narrow guidelines in order to receive a CDC-approved diagnosis. You must first test positive for antibodies through a test called EIA, or enzyme immunoassay. This is the test Kaiser gave me, which came out negative. If you test positive, you will be given a second test, called the Western Blot. The Western Blot measures antibody levels with more detail than the EIA. According to CDC rules, after testing positive to both these tests, you can be treated with a two-to-three-week course of oral antibiotics. This treatment, proven effective for Lyme in its early stages, is covered by insurance.
But according to Bay Area Lyme Foundation, this method of testing misses 60 percent of cases of Lyme. Dr. Darin Ingels, an LLMD, Lyme survivor, and author of The Lyme Solution, writes that these testing standards were established in the mid-1990s prior to our more nuanced understanding of Lyme today. In his book, Ingels discusses science’s more recent discoveries: There are more than 100 species of borrelia in the United States. But the CDC test only looks for borrelia burgdorferi. Ingels also writes that the EIA test is just not particularly sensitive. The Western Blot is much more so, but not offered unless your EIA results are positive. Even so, Ingels writes that his patients have had varied responses to the Western Blot test, even the same patient over the course of treatment. Their response depends on the state of their immune system. This is another reason the tests fail to detect Lyme—someone with a compromised immune system will not mount a robust immune response to invading bacteria.
To complicate all this, sometimes, according to many LLMDs, including my own doctor, even if you do test positive and receive treatment, the short course of oral antibiotics may not work. The CDC agrees that borrelia is treated with most success early in an infection. Antibiotic treatment will also fail to eliminate parasitic co-infections.
What happens if borrelia is not detectable in standard tests, or if antibiotic treatment fails, and a patient develops chronic symptoms? According to its website, the CDC debates whether late-stage Lyme disease is actually Lyme disease at all. With the approved tests, evidence for a borrelia infection can be impossible to find in patients complaining of long-term symptoms. Regardless, the CDC doesn’t approve long-term antibiotic treatment, citing studies that failed to prove adequate results, as well as concerns about side effects.
Effective testing and most treatments for chronic Lyme are not covered by most insurance policies. According to Dr. Darin Ingels and other LLMDs, the lab IGeneX offers a much more reliable (but not infallible) and much more expensive test for Lyme. IGeneX also just came out with a revised Western Blot test, more sensitive than the original. But to get these tests, you must visit a private LLMD specialist.
LLMDs also offer clinical diagnoses, which Dr. Darin Ingels and Dr. Richard Horowitz agree is the best way to diagnose Lyme disease, because of the multiple microbes possible in any infection. This means ruling out other possible diagnoses and checking a long list of symptoms that indicate a Lyme infection. If you answer in the affirmative to enough of the questions, a Lyme diagnosis can be assumed regardless of lab tests.
Dr. Richard Horowitz, one of the best-known LLMDs in the nation, has published his own questionnaire and considers it more effective than any lab test on the market. You can find the questionnaire in his book, Why Can’t I Get Better, or online.
Standard treatment options for Lyme in an LLMD’s office include weekly, long-term IV antibiotic treatments, anti-parasitic treatments, detoxification treatments, blood ozone treatments, IV nutritional support, supplements, and herbs.
These treatments can be helpful and may lead to remission. But none is short term, and none is cheap. The typical LLMD charges $500 to $900 an hour for a doctor’s visit. Testing for Lyme and co-infections usually costs about $500 to $700 per test. One IV antibiotic treatment is usually over $100. Supplement bottles typically cost about $50 each; some are much more. Most chronic Lyme patients will need to take about 20 different supplements daily, ongoing, and will require medical treatment for years. How many of us can afford this?
People with chronic Lyme have high rates of suicide. When the disease is active, life can feel like it’s not worth living. The reason to keep fighting is the hope of eventual improvement and possibly remission. But if someone can’t afford treatment, this hope can wane.
With the number of infected Americans so high and rising, why is the Center for Disease Control so slow to mandate covered treatment for chronic Lyme disease? Why are we spending so little money on research to find treatments that work, and a cure? Why are most doctors still so misinformed about Lyme disease? Some answers lie in the difficulty and expense of treatment, while others are elusive.
Dr. Rawls writes in his book Unlocking Lyme that doctors are caught between a rock and a hard place when faced with a patient complaining of multiple chronic symptoms. He writes that when the lab tests for borrelia appear negative, there aren’t many treatments available through conventional medicine for the myriad symptoms of Lyme disease.
My Kaiser doctor had no idea that the standard test is so ineffective at diagnosing Lyme, and she wasn’t about to listen to me questioning it.
Dr. Rawls writes about how frustrating this problem is for doctors and opines that conventional medicine, while excellent at treating acute conditions, has a long way to go in terms of understanding and treating chronic illness.
Because of a lack of FDA approval of herbal treatments, doctors can’t prescribe them. The one treatment they could possibly prescribe for Lyme would be long-term IV antibiotic therapy. However, because the CDC doesn’t approve this treatment, insurance companies don’t typically cover it. It’s controversial even within the world of LLMDs.
Lyme may also affect women differently than men. According to a study by Dr. John Aucott of Johns Hopkins University, men are more likely to test positive for Lyme with the conventional, two-tier test for Lyme disease. This means men are more likely to receive early treatment for Lyme, when it might actually work, whereas women are more likely to develop long-term symptoms unrecognized as Lyme disease by conventional medicine.
Does this discrepancy contribute to our country’s less-than-robust effort to understand and treat chronic Lyme? Film director and Lyme patient Sini Anderson is working on a documentary, So Sick, which explores chronic Lyme disease as a feminist issue. She writes that about 80 percent of people struggling to recover from chronic Lyme disease are women. She also writes that women’s immune systems are different from men’s, largely due to differences in hormones. This means drugs may work differently for men than women. But test subjects in drug trials historically have often been mostly male. This can lead to treatment protocols that work more effectively for men. Sini’s documentary examines all of this through multiple interviews with women facing chronic Lyme disease.
As #MeToo has shown us, we have a long way to go before women are treated as true equals. And this extends to the realm of medicine. Every woman I know with Lyme was shown the door by her conventional doctor with a pill for a psychiatric disorder. I distinctly remember one of my doctors smirking as he remarked, “I think you’ll be surprised how much better you feel when you take this,” and handing me a Xanax. One friend of mine was told she would feel much better if she just got pregnant and had a baby to focus on, instead of herself.
More funding and research is desperately needed, both to understand chronic Lyme generally and women’s health specifically as it relates to Lyme. As patients and as their friends and family, we need to demand change, just as the AIDS community did in the 1980s. Women are accurate reporters of our own physical experience, and the medical community should listen. All people with chronic Lyme disease deserve better care.
If you have Lyme, or you know someone affected, write letters and tell your story. Write the hospital and complain if you are treated badly. Take a friend to your doctor’s appointment as your advocate. Write your senator and ask for more funding for Lyme disease research and research into women’s health as it relates to tick borne illness. As more people, including doctors, demand better treatment and insurance coverage for chronic Lyme disease, policy will shift.
According to the Bay Area Lyme Foundation, the western black legged tick can be found in all but two California counties. There are warning signs posted along Highway 1 in Sonoma County and in the San Bruno hills. As far back as 1993, a friend of mine was infected in Pinole. Given that ticks travel on birds, it is safe to assume that Lyme is near you.
The best way to avoid Lyme is not to get bitten by a tick. Clear dead leaves and grasses away from places where you spend time. Don’t sit on old, damp stonewalls, piles of wood, or stumps. Wear protective clothing, such as pants tucked into socks (fashion forward!) if you go hiking. White clothing will show ticks well. Repellant works, even natural repellant with essential oils. Spray your pant legs. Spray your kids.
Check your body and your kids for ticks after spending time outdoors. Ticks like warm spots: behind or inside the ears, along the hairline, in the belly button, under elastic bands, between the toes. If you find a western black legged tick, gently pull it out with tweezers, and save it in a zip lock bag. Go to www.TestMyTick.com or to BayAreaLyme.org, and order a test kit. Send your tick to a lab to find out if it is harboring bacteria. If the tick was infected, you need a good doctor ASAP. To choose an LLMD in your area, go to www.ILADS.org. They will send you a list of certified doctors close to you. It’ll be costly, but worth it.
If you get diagnosed with Lyme, consider joining one of the many Facebook groups offering advice and support. You can also find many Lymies on Instagram willing to share their experiences and offer advice. Treatment is a long and winding road, and it is invaluable to have support along the way.
I am now a little over a year into Lyme treatment, which includes vitamin supplements, Stephen Harrod Buhner’s herbal protocols for borrelia and babesia, weekly IV antibiotic therapy (it has been 10 months, and I am just starting to slow these down), herbs to assist with detoxification and the breakup of biofilms, IV glutathione to assist with detoxification, and ozone IV drips to improve immune response. My diet consists of vegetables, meat, and nuts. (Never again will I doubt someone’s gluten intolerance!) I feel much better, though I am not in remission yet. I teach at my studio half time and take naps every afternoon before my kids come home.
For me, Lyme has become a spiritual discipline. I practice accepting the disease and its uncertainty and moving forward moment by moment, day by day. I use meditation and visualization daily to keep my nervous system calm and my body open to healing. I choose to believe that I have Lyme for a reason—whether or not that is actually true. I can learn from this illness, and I can help others with their healing.
One year ago, I launched a website, www.RedKiteMeditations.com. It contains an album of meditations for people with chronic Lyme, called The Cells’ Breath. (Also on iTunes.) I blog on the site, offering meditation tools and Pilates-based exercises for people with Lyme-related pain, anxiety, and insomnia. The site has linked me to the wider Lyme community, which is an amazing source of strength and encouragement.
Most days, I feel inspired to be a part of this community: from our unconditional support for each other and from our demand for respect from the medical community, better research, and a cure. Most days, I feel lucky to be as well as I am and to have access to treatment. But the day that the CDC announces a cure for chronic Lyme disease covered by insurance is the day I will truly celebrate.
Until then, I’ll keep writing letters and sharing my story.