Lyme Disease: A Stealthy and Controversial Illness

women and man hiking

A long backpacking trip into the wilderness or an enthusiastic game of frisbee golf can both end the same way: Lyme disease. In the spring and summer months, ticks are out, hiding in tall grass and brushy overgrowth.  A tiny, black-legged tick may seem like a small inconvenience, like an ant that finds its way to a summer picnic. The bacteria that many of these ticks carry, however, can trigger a disease that, if left untreated, can affect you for the rest of your life. Learn the risks of Lyme disease and what treatment can get rid of this persistent sickness.

What is Lyme disease?

Lyme disease is a tick-borne illness, the most common tick-borne illness in the U.S. with around 476,000 cases every year. It begins with a tick bite but can progress to a life-changing condition. Some black-legged ticks carry the bacteria, usually Borrelia burgdorferi, that causes Lyme disease. Most doctors agree that early diagnosis and treatment is critical to preventing long-term effects.

Lyme disease can travel to several different systems of the body, moving from the skin to the nervous system, joints, and heart. It often begins with a rash that may be accompanied by a fever, muscle aches, and headaches. Some people develop facial palsy, a droop on one side of their face, when the disease progresses to the nervous system. Others experience shooting pain, numbness, and tingling, another sign that the disease has made its way to the nervous system. Lyme can cause debilitating fatigue, impair cognition, and disturb sleep. Once it has spread beyond the skin, it can disperse to many parts of the body and show up in a range of symptoms.

Checking for Ticks

Most people may associate ticks with long hikes in the woods or a camping trip, and they check for ticks after their weekend away. While this is a common place to encounter ticks, you may find ticks in your own backyard, especially if you live in a state in the northeast, Midwest, Oregon or Washington. It’s a good idea to thoroughly check for ticks after any time spent outside near tall grass, leaves, or wooded areas. To check for a tick, follow these steps:

  1. Wear light-colored clothes to make spotting ticks easier.
  2. Shower or remove all clothing.
  3. Use a mirror to help check difficult-to-see areas.
  4. Begin with your head and work your way to your toes.
  5. Feel your scalp thoroughly, as ticks love to hide in hair.
  6. Check thoroughly behind your ears, in your armpits, between your legs, behind your knees, and in between your toes.

If you do discover a tick, carefully remove the tick using a tweezer. Be sure to clean the skin around the tick bite as well as the tweezers and your hands. Schedule a doctor’s appointment as soon as possible. Either have your doctor send the tick to be tested for bacteria or send it away yourself. Use tickreport.com.

States with highest incidence of Lyme disease

About 95% of Lyme disease cases occur in 14 states: Connecticut, Delaware, Maine, Maryland, Massachusetts, Minnesota, New Hampshire, New Jersey, New York, Pennsylvania, Rhode Island, Vermont, Virginia, and Wisconsin. Source:  Icahn School of Medicine at Mount Sinai

Diagnosis and Treatment

If you find an attached tick, you should contact a doctor immediately. Prevention and early treatment of infection leads to the most successful outcomes. Doctor Laurie Radovsky has been treating Lyme disease for over fifteen years. On her website, she stresses the importance of immediate action after a tick bite, saying seeing a doctor and asking for a preventative treatment of antibiotics is a must. Beginning preventive or early treatment can be the difference between a short-lived case of Lyme disease and a case of Lyme that lasts for years.

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Radovsky expressed frustration over many doctors’ complacent attitudes toward tick bites, saying that even if the tick had been attached for less than three days and the patient has no rash, the bite should be taken seriously. She advises a course of antibiotics, saying “This is a case where I think antibiotics are underutilized.” Radovsky’s recommendation matches that of the International Lyme and Associated Diseases Society (ILADS), of which she is a member.

At Lymecore Botanicals, owner and co-founder Doctor Myriah Hinchey also calls for immediate action after a tick bite. Lymecore has their own formula of treatments titled ASAB (As Soon As Bitten) and ASAB 2. Hinchey said that because Acute Lyme disease is much easier to treat than Chronic/Persistent Lyme, she takes every tick bite seriously.

It is difficult to test for the bacteria that causes Lyme disease. It can hijack the immune system, preventing the body from creating the antibodies. Lyme can also hide in tissue and organs and escape detection by the immune system. “Testing is kind of like creating a wanted poster. And if the object that you’re looking for is constantly changing what it looks like, you can’t create a wanted poster for that,” says Radovsky.

The CDC’s current testing is 30 years old. And it tests, not for the bacteria that causes Lyme, but for the antibodies that most people produce in response to the bacteria. This is problematic for Radovsky, who says the test is so outdated that has never been updated after the Lyme vaccine was dropped. Current testing can lead to false positives if patients still have antibodies in their system, and it can return false negatives if the patients did not create enough antibodies to register on the test.

Early Lyme Disease

Lyme disease progresses through several phases, beginning with the skin in the early stage and progressing to other systems of the body. Many people develop a rash, a solid pink or red area on their skin (not necessarily a bulls-eye rash). This distinctive rash is enough for doctors to diagnose Lyme disease even if a patient is unaware of a tick bite. Not everyone develops a rash, though.  Anywhere from 20-73 percent of people never develop a rash from Lyme disease. Testing, however, will not be accurate at this point in the illness. Current tests do not check for the bacteria, but only for the antibodies, the immune response to the bacteria. This response takes time to develop and show up on a test.

Early Disseminated Lyme Disease

Lyme disease also has other symptoms, like a headache, muscle and joint pain, and a fever, sometimes called “summer flu” symptoms. At this point, the disease has traveled to other systems and may need a more stringent treatment plan. Radovsky treats her patients until they feel better and keeps them on antibiotics for another two weeks after symptoms go away. Radovsky recognizes the dangers of extended antibiotic use, and works to counterbalance the effects of antibiotics with diet and lifestyle changes, but she strongly feels that Lyme should be treated with a “high level of suspicion and a low threshold for treatment.”

Late Disseminated Lyme Disease

As Lyme disease progresses, either because it was never treated or because treatment did not eradicate the bacteria, it can show up in different systems of the body. It can lead to arthritis, heart arrhythmias, nerve damage, and cognitive difficulties.

Chronic/Persistent Lyme disease is difficult to diagnose and difficult to treat. “Lyme disease has been called the ‘great imitator.’” It can infect many different tissues and organs and “mimic” all sorts of conditions including chronic fatigue syndrome, fibromyalgia, and depression, according to the International Lyme and Associated Diseases Education Foundation (IDLADEF).

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Symptoms can include fatigue, brain fog, difficulty with recalling words, trouble sleeping, headaches, joint and muscle pain, numbness and tingling, depression, anxiety, and more. I spoke with a patient with Chronic/Persistent Lyme disease and her symptoms ranged from overwhelming fatigue and brain fog to mental health symptoms. She said she had to cut back to three days of work a week, and then for the rest of the time, “I would be in my apartment on my couch.” The only exercise she could manage was a 10-minute walk.

According to a recent study, about 40 percent of patients that are diagnosed with Lyme have symptoms that show the disease is already in the Late Disseminated stage. Most have been to more than four doctors, traveled more than 50 miles to get treatment, and dealt with symptoms for at least 6 months. The patient with whom I spoke, searched for about 2 years before finally being diagnosed. She saw more than 10 doctors and had to drive over 100 miles to get the care she needed.

Patients with Chronic or Persistent Lyme may need extended courses of antibiotics paired with herbs and other lifestyle changes to fight the disease, while healing the body. Both Radovsky and Hinchey find herbs to effectively attack Lyme and restore their patients’ health. Each case is different, and each approach must match what the patient needs. The patient with whom I spoke was on four antibiotics with a whole set of herbs, probiotics, antifungals, an exercise plan, and a strict diet. She had to overhaul life completely, but within about 3 weeks she felt significantly better. It took her about two years to get herself back to about 70 percent capacity, but the treatment she finally found was completely life changing.

Lyme Disease: Rife with Controversy

Unfortunately, Lyme disease is also the center of a divide among health-care practitioners. From the moment you discover a tick attached to you, doctors disagree on Lyme disease. The Centers for Disease Control and Prevention (CDC) and the International Lyme Disease and Associated Diseases Society (ILADS) stand on opposite sides of the Lyme disease, divided on everything from how to respond to a tick bite, to the existence of Chronic/Persistent Lyme disease. Staunch positions on diagnosis and treatment can separate colleagues, leaving patients without proper treatment and struggling to find care. “When it was first discovered, it was thought to be easy to diagnose and easy to treat,” says Radovsky. That mindset has taken root and has not shifted among the conventional medical community.

Doctors’ Point of View

For doctors like Radovsky, who devote their careers to treating Lyme, this divide is detrimental to patients and doctors. “It’s heartbreaking,” said Radovsky when discussing patients who have spent months to decades looking for answers to their condition, paying thousands of dollars because the healthcare system will not cover their medical expenses.

Radovvsky wandered into the Lyme disease field in what she calls a “serendipitous” way, becoming interested in Lyme while studying chronic fatigue syndrome and fibromyalgia for her fellowship from the Bush Foundation. She discovered that Lyme disease was often the underlying cause of these conditions, and when she treated patients for Lyme disease, their conditions improved. Now, she has her own practice, committing her time to treating Acute and Chronic/Persistent Lyme.  Colleagues have parted ways with her, siding with conventional medical practices for Lyme. And she can no longer accept insurance, doing her best to keep costs low, so that her patients can still access the crucial care they’ve been searching for.

Hinchey had Lyme disease herself and after years on antibiotics, happened upon Stephen Buhner’s herbal treatment plan that eventually spearheaded her to found her company, Lyme Botanicals, developed to ensure consistent access and high-quality herbal treatments for Lyme and other tick-borne illnesses. As a naturopathic doctor, she always starts with the least invasive and least harmful approach. And after years of treating Lyme, she found that most patients were symptom free and able to wean off their treatment faster on a strictly herbal protocol than those on an antibiotic and herbal or just antibiotic treatment. She calls her methods one of the most controversial treatments for one of the most controversial diseases. Yet, if it helps her patients, she is committed to the power of herbs to heal Lyme.

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Patients’ Perspectives

Patients with Lyme disease are often caught in the middle of this controversy and the political landscape of the condition. Diagnosis is difficult unless they know of a tick bite and have the distinctive rash. It’s difficult to find a doctor who can treat Lyme successfully, who is “Lyme-literate,” the patient I interviewed said.

She also talked about the cost of treatment. Testing for Lyme cost her more than a thousand dollars. Now, she says she spends more on her treatment than on her mortgage. Because most doctors who treat Lyme find themselves outside of the conventional medicine circle, they are unable to take insurance.

Few people can afford to pursue treatment. Others find the cognitive and mental toll of the illness hampers their efforts to find healing. Many must educate themselves on Lyme, research doctors who can treat them, and all this can be too much for patients suffering from the cognitve impairment of Lyme disease.

When I asked this patient what she wished she would have known about Lyme, she said, “I wish I had known to get treated right away.” Doctors Radovsky and Hinchey also emphasize early treatment. Even the CDC recognizes the importance of getting ahead of Lyme disease. With tick season in full swing, keep this in mind. The experts and those who suffer from Lyme disease urge you to take a tick bite seriously.

Genetics and Lyme Disease

If you get a tick bite, your chance of developing Lyme or developing persistent symptoms depends on your genes. Research from Helmholtz Centre for Infection identified a gene variant in patients with Lyme disease, further opening the door of understanding to Lyme disease, especially Chronic or Persistent Lyme disease. Those with this gene variant do not create the same number of antibodies to fight Borrelia, the bacteria that causes Lyme. Overall, these people’s inflammatory or immune response to Borrelia is less than those without the gene. To read the full news release from Helmholtz Centre for Infection Research click here.

References

Comparison of Lyme Disease in the United States and Europe

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8314816/

Lyme Disease: What the Neuroradiologist Needs to Know

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6975358/

What We Know and Don’t Know About Lyme Disease

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8813852/

SUMMARY OF ILADS’ RECOMMENDATIONS

https://www.ilads.org/research-literature/controversies-challenges/

ILADEF FAQ on Lyme

https://iladef.org/education/lyme-disease-faq/

ILADS Controversies & Challenges in Treating Lyme and Other Tick-borne Diseases

https://www.ilads.org/research-literature/controversies-challenges/

Chronic Lyme Disease

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4477530/

Evidence assessments and guideline recommendations in Lyme disease: the clinical management of known tick bites, erythema migrans rashes and persistent disease

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4196523/

Access to Care in Lyme Disease: Clinician Barriers to Providing Care

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9601439/

Chronic Lyme Disease: An Evidence-Based Definition by the ILADS Working Group

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6963229/

Late Disseminated Lyme Disease

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5840488/

Superior efficacy of combination antibiotic therapy versus monotherapy in a mouse model of Lyme disease

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10703379/

Controversies in Persistent (Chronic) Lyme Disease

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5102277/

drradovsky.com/wp-content/uploads/2019/06/Treatment-of-Tick-Bites-and-Acute-Lyme.pdf                                                                 

  https://www.cdc.gov/lyme/treatment/erythema-migrans-rash.html

CDC – Neurological Lyme Disease

https://www.cdc.gov/lyme/hcp/clinical-care/neurologic-lyme-disease.html?CDC_AAref_Val=https://www.cdc.gov/lyme/treatment/NeurologicLyme.html

CDC – Lyme carditis

https://www.cdc.gov/lyme/treatment/lymecarditis.html

CDC – Lyme arthritis

https://www.cdc.gov/lyme/treatment/LymeArthritis.html

Author
Priscilla Lundquist

Priscilla Lundquist, a member of the Innovision editorial team, graduated from the University of Minnesota with a journalism degree, and after teaching English for a number of years, now spends her time writing about women’s health, ageing, healthy eating, and staying active.

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