Make yourself ‘Lyme-literate’



By Emily Bracale

A man walks into a bar – no, wait, this is no joke. A man walks into a clinic with an embedded, engorged tick, a tender, one-inch red rash forming around it. He is not offered treatment because the tick was attached less than 24 hours.

He doesn’t want to argue, is afraid antibiotics would mess with his gut anyway and goes home. This is the beginning of many people’s story of how “early stage” Lyme became chronic.

People share such stories with me daily, seeking advice. I know how it feels to be severely cognitively impaired and physically disabled from Lyme disease. That, plus eight years studying, writing, designing and teaching curriculum about it, while networking with thousands of patients and medical professionals, makes me somewhat of a “Lyme-literate” citizen.

It isn’t a fun hobby, but I continue to do it because my heart calls me to it.

Thankfully, there are some Lyme-literate doctors, nurses and healers, but most patients’ first encounter will be with someone who is uninformed or misinformed. The medical establishment’s stance on Lyme is full of conflicts and complexity. My goal here is for people to advocate for themselves.

“Safe” attachment time is a myth.

There are fewer cases of disease when ticks have been attached less than 24 hours; however, when Lyme and other yucky things are in the tick’s salivary glands, transmission can happen fast. There are confirmed cases of Lyme after attachment for less than 15 minutes.

A tick does not need to become engorged to transmit diseases. Ticks of any age and sex can transmit diseases. (Mail them to U Mass Amherst for testing; this will relieve you of concern, or show you what diseases you’ve been exposed to; 50 percent of deer ticks in Maine carry Lyme.)

Many patients don’t remember a tick bite; you can get Lyme other ways. Maine has the highest per capita rate of Lyme in the U.S. Hancock Country has the third highest rate in Maine. Using the CDC’s rate estimates, the risk of contracting Lyme during your lifetime is greater than 50 percent for every Mainer.

Lyme bacteria, Borrelia burgdorferi, is the same kind of bacteria as syphilis. It has the same list of symptoms, including being a cause of blindness, heart failure and dementia. A pathologist found evidence of Lyme bacteria in 1,000 out of 1,000 Alzheimer’s patients’ brains. Would you take a chance at contracting or under-treating syphilis?

Lyme bacteria take a long time to duplicate, suggesting the need for longer treatment than genetically simpler and faster duplicating bacteria like strep. While it is true that antibiotics mess up your gut biome, and they are not the only viable treatment, not treating or under-treating an acute case of Lyme can lead to a more complicated treatment down the road.

Sometimes I fantasize about moving away to a safer place, starting over anonymous, having no association with Lyme. But Lyme is global. It meets the National Institute of Health’s eight criteria for a pandemic.

Besides, I love Mount Desert Island. I moved here for college, the national park and my love of plein air painting.

I know MDI is one of the most beautiful places in the world. That’s why millions of visitors come here for vacation. They, too, deserve to be better informed.

Back when I was traveling, guidebooks warned where there was malaria. This didn’t make me avoid those countries. It just educated me to take precautions such as mosquito netting and bug spray. Nevertheless, my companion contracted malaria in an area we weren’t expecting it. Fatigue, anemia, severe headaches, high fevers, drenching sweats and teeth-rattling chills waxed and waned as the blood parasites went through their cycles. We came home for intensive treatment.

Now visitors to Maine can contract malaria’s cousin, babesia, from ticks in our woods and yards. Babesia can cause all these symptoms plus “air hunger,” a feeling that you can’t get enough breath.

Getting more than one disease from a tick bite is the norm. This is important to know because some “co-infections” will not respond to the same treatment as Lyme or show up on a Lyme blood test.

A blood test in the first 4-6 weeks can be negative because the body takes that long to produce specific antibodies. The common tests are less than 50 percent accurate. They were never intended to be the gateway to getting treatment; they were designed for strict CDC surveillance criteria. The most accurate antibody bands were removed from the tests during vaccine development so as not to create false positives in a theoretically vaccinated populace. The vaccines failed, but the blood tests remain lame.

They also won’t register an emerging strain of Lyme, Borrelia miyamotoi. Doctors and nurses in the system have been discouraged from using labs that do provide more accurate tests, such as iGeneX and iSpot – which actually shows if you have a current infection, not just whether you have been exposed to Lyme sometime in the past.

If you have a bull’s-eye rash, erythema migrans, that means you have Lyme. But it’s not the most common rash. It’s just an easy sound-bite to remember, so people keep repeating it. The hallmark rash of Lyme is actually a red, expanding rash. It may be more oval than circular. It may or may not itch. It may occur only 7 percent of the time in children. “According to the 2016 Lyme Legislative Report by the Maine CDC, an EM rash was present in only 51 percent of CDC positive cases … Therefore, we cannot rely on seeing the rash as necessary for the diagnosis of Lyme disease.” (MaineLyme)

Last year, Maine was the last state in New England to pass a law protecting doctors who treat Lyme. It is legal for physicians to treat you for Lyme based on a clinical diagnosis. People that feel they are not being taken seriously, such as the man I mentioned in the opening paragraph, have legitimate reasons to file a complaint with the Maine Medical Licensing Board and Maine Medical Association.

When you hear about “Tick Talks” and Lyme conferences in the news, please understand these free events are not just for Lymies to huddle with their tribe. They are for everyone, organized by survivors who asked “Why didn’t anybody tell me how to avoid this, or how serious this could become?!”

We learned the hard way. Now, we educate others by inviting experienced doctors, scientists and leaders in the field to present a wealth of information and current research about methods of prevention, treatment and support. Anyone working within the health care system would do well to respect and value peers who take the initiative to attend these conferences and network with experienced Lyme-literate health care practitioners.

Learn more about Lyme, co-infections, prevention, symptoms and support groups near you at MaineLyme.org.

Emily Bracale is a Lyme-disease awareness advocate and a resident of Bar Harbor.

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