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- Photo by Pat Mazzera
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.
This report was originally published by our sister publication, The East Bay Monthly.