By Emily Bracale
I’ve got Lyme disease again, from a poppyseed-sized tick in the short grass in my gated yard on Ledgelawn Avenue in Bar Harbor.
Back when the definition for Lyme disease was established by the Infectious Disease Society of America, it was described as hard to get and easy to treat, and was not considered to become chronic. Well, if that ever was true, it certainly isn’t now. Last year, Maine had more than four times the number of cases needed to call Lyme an epidemic. There are confirmed cases in every state. It’s endemic in 89 countries. Lyme has become a global epidemic.
Every day, I field messages from people desperately seeking help regarding symptoms, tick bites and treatment. I donate hours daily to educate and support others.
Last fall on Mount Desert Island, 50 percent of ticks tested positive for Lyme. Transmission through a tick bite can happen within minutes, though risk increases as attached ticks suck a little blood and spit a little saliva for hours. Tick saliva numbs your skin and tells your immune system not to worry. A “messy” tick removal can heighten your risk of getting whatever disease it may be carrying. Several tick-borne diseases are on the rise in Maine. Anaplasmosis can cause a sudden low white blood count and be fatal within weeks. Babesiosis, a cousin of malaria, can cause “air hunger,” anemia and night sweats. To learn more about tick-borne diseases in Maine and prevention tips, visit MaineLyme.org. Attend their free “Tick Talks.”
Everyone knows deer and mice are vectors, but dogs, cats, squirrels, migratory geese, songbirds and other animals can also carry Lyme-infected ticks. Mosquitos and fleas can spread Lyme. Lyme has been found in semen and vaginal fluids. It can cross the placenta causing miscarriage or illness in the baby. Or it may lie dormant.
Lyme bacteria, Borrelia burgdorferi, is a master of disguise. As a spiral-shaped bacteria, called a spirochete, it can corkscrew out of your blood stream within minutes of entering, burrow into tissues, leading to symptoms in any organ, like its relative, syphilis. It can hide inside your own immune cells, traveling undetected through your body like a wolf in sheep’s clothing. Individual spirochetes can join into colonies called “biofilms,” like “gated communities” protecting the bacteria from attack and making treatment long and difficult. Lyme biofilms have been found in autopsies of many human tissues and organs, including brains of Alzheimer’s patients.
Acute infection typically includes fever, achy joints and muscles, roving nerve pains and fatigue. If you get a “bull’s eye” rash, the Center for Disease Control says that’s Lyme, no need for a blood test to verify. But only 17 percent of adults get that rash, only 10 percent of children get it; more common is an evenly red, spreading rash. There may be no rash. There are more than 100 strains of Lyme in the United States. Guess how many the usual blood tests look for? One!
Routine tests are only 45 percent sensitive. Over half the people who really have Lyme will get a false negative. You’ll likely test negative if you’ve recently taken a prophylactic dose of doxycycline (which delays antibody production) for a tick bite, or if you were on steroids for that arthritis which was actually Lyme in your joints, or if you’ve been ill for months and all your antibodies are on active duty, attached to Lyme bacteria, not lounging around in your blood.
Read 19 reasons for false negatives at www.anapsid.org. For more accurate tests, patients can contact an independent lab such as IGeneX at igenex.com.
If untreated or insufficiently treated, typical symptoms include fatigue, inflammation, sensitivity to sound and light, nerve pain and numbness, sleep and digestive disorders, hormone disruption, anxiety and depression, and heart issues. People can die from Lyme carditis. Lyme in the brain can cause cognitive and psychological problems; I know from experience. The Social Security Disability examiner noted I was “severely cognitively impaired” five years ago, especially with short-term memory and difficulty speaking fluently. Called “The Great Imitator,” Lyme can be misdiagnosed as Alzheimer’s, Arthritis, Chronic Fatigue, Fibromyalgia, Bi-polar, Lupus, Crohn’s disease, Autism and more. In the documentary “Under Our Skin,” Dr. Dietrich Klinghart says, “We never had in the last five years a single MS patient, a single ALS patient, a single Parkinson’s patient who did not test positive for Borrelia burgdorferi. Not a single one.”
When sufficiently treated, many recovered!
Healing may take months, even years. An overwhelmed immune system may enable other latent infections, such as candida, to bloom. Identification and treatment of co-infections also needs to be addressed. Healing requires patient involvement, self-advocacy and an integrated approach to treatment.
I’m currently taking antibiotics, herbal antibiotics and homeopathic remedies, and getting acupuncture, chiropractic, craniosacral therapy and energy healing. Though healing requires more than antibiotics, the savvy use of them is a fundamental part of most people’s successful treatment. To find a “Lyme literate” doctor who understands the multifaceted approach to treatment many people need, I have to refer people off-island, down the coast and out of state.
MDI needs a “Lyme literate” physician!
A weeklong intensive training is available through the International Lyme and Associated Diseases Educational Foundation. I’ll offer a $1,500 scholarship to the first “qualified medical professional” on MDI who signs up.
While we wait, people, print and share “The ABC’s of Lyme Disease,” “The LymeR Primer” and “Psychiatric Lyme Disease” at lymediseaseassociation.org and ILADS.org.
Attend Lyme Awareness conferences. Visit cangetbetter.com. Read “Out of the Woods: Healing Lyme-Body, Mind & Spirit.” Listen to LymeLightRadio podcasts to hear inspiring stories of healing and cutting edge research. Healers, I teach a half day course, “The Energetics of Lyme: a Positive Response.” Contact me at [email protected].
Emily Bracale is the author of “In the Lyme-Light II: Portraits of Illness and Healing.” She lives in Bar Harbor.