The Facts and Uncertainties of Lyme Disease

Outdoor activities, such as hiking and camping, are fun activities for family and friends, but everyone should be cautious of bug bites, no matter how insignificant they seem at first glance. Unbeknownst to many are the dangers involved with leaving a tick bite untended and untreated.

One potential outcome is Lyme disease, a bacterial infection normally contracted from the bite of an infected black-legged tick, better known as the deer tick. The bacterium carried is called Borrelia burgdorferi and Borrelia mayonii, both of which are mostly found in the United States, whereas similar-acting bacteria—Borrelia afzelii and Borrelia garinii—are often found in Europe.

How Lyme disease affects the body

"Lyme disease can present in three stages," said Odelia Lewis, M.D., a board-certified family physician. "Stage one is an early localized disease—that is, in week one to week four after the bite. Stage two is an early disseminated infection and that's month one to month four. And stage three is called late persistent, and that can be anytime, from months to years."

Each stage presents unique symptoms. Stage one usually manifests as headaches, stiff neck, fever, chills, muscle and joint pain, swollen lymph nodes, and a bull's-eye or target rash that can appear on multiple parts of the body where the tick bites originally occurred. During stage two, the symptoms can be pain and numbness in the body, weakness in arms or legs, conjunctivitis, poor memory and concentration, facial paralysis or joint pain, usually in the knees.

Lewis noted that in stage three, patients may experience "severe fatigue, severe headaches and migraines, memory issues or problems concentrating, numbness in arms, legs, hands, or feet, arthritis in joints, dizziness, and irregular heartbeats."

'Over the course of my three years of being sick, I experienced dozens of symptoms.'

Jesse, a singer/songwriter from Brooklyn, New York, dealt with long-term illness after contracting Lyme disease.

"Over the course of my three years of being sick, I experienced dozens of symptoms," he said. "My main [symptoms] were fatigue. That's the closest word [I] have for it, but it was so much worse than just being tired. It was awful. [I also experienced] brain fog, and a constant crawling sensation under my skin. I dealt with digestive issues, headaches, rashes, sensitivity to cold temperatures, bright lights and loud noises, and I also experienced air hunger."

Air hunger is when you develop a sensation in which you have to breathe deeply, a constant feeling of breathlessness.

"I was in the best shape of my life," Jesse added. "But after walking up a flight of stairs I couldn't catch my breath, which was very scary. There were also night sweats, heart palpitations, intense psychiatric symptoms, including mood swings, depression and anxiety. Also, insomnia, short-term memory loss, ringing in my ears, dizziness and nausea."

Diagnosis of Lyme disease

A confirmed diagnosis of Lyme disease is completed using lab tests that identify antibodies. Because of this, test results are often more reliable weeks after infection.

The two recognized tests are the enzyme-linked immunosorbent assay test (ELISA) and the Western blot test. The ELISA test is most popular and detects antibodies to Borrelia burgdorferi present after infection. However, it can render false positives so it requires another confirmation test.

The Western blot test is usually done to confirm diagnosis after a positive ELISA test, and detects antibodies to several proteins of Borrelia burgdorferi.

In some instances, early-stage infections will show negative results, but the medical provider may proceed with a positive diagnosis based on the distinctive rash associated with the disease. In addition, if the patient lives or recently visited an area known to be infested with ticks that frequently transmit Lyme disease, this could also sway a doctor toward a positive diagnosis.

There is concern about the variance of results for some Lyme tests on the market. Jesse noted he had "a steady decline over months where I went to 15 different doctors and every single one told me I was completely fine. I was finally diagnosed primarily based on my symptoms. We later used a diagnostic test from Igenex. I also tested positive for Babesia, a very common co-infection that is complicated and difficult to treat, just like Lyme is."

Treatment options

"Lyme disease can be treated with oral antibiotics," Lewis said. "The length of the antibiotic course is dependent on the severity of symptoms. Neurologic and cardiac complications usually require IV antibiotics."

Early-stage treatment for Lyme disease includes oral antibiotics like doxycycline, for adults and children older than 8, and amoxicillin or cefuroxime for adults, younger children, and pregnant or breastfeeding women. Treatment courses are usually 14 to 21 days, but some studies show courses of 10 to 14 days are equally effective.

Intravenous (IV) antibiotics are introduced if a patient develops neurological symptoms. The recommended treatment course is 14 to 28 days, with the intention of completely eliminating the infection. However, symptom recovery may take time. Side effects of IV antibiotics vary but can include mild to severe diarrhea, or colonization or infection with other antibiotic-resistant organisms unrelated to Lyme disease. A lower white blood cell count is also possible.

"I started on oral doxycycline and several vitamins and supplements," Jesse said. "I took the oral doxycycline for six months before switching to IV azithromycin. At one point, I was taking over 80 vitamins, supplements, tinctures and herbs a day. All with the hope of rebuilding my immune system. In the end, I was fortunate to be offered a combination of chelation (a heavy metal detox IV) and ozone, which completely saved me."

The uncertainties of Lyme disease

The literature and treatment options for Lyme disease span from conventional medical practices to naturopathic treatments. The fluidity in the diagnosis and the uncertainty about what the patient's body will respond to fuels the narrative. However, dedicated research is currently underway with regard to how this condition should be treated.

Something every long-term sufferer of Lyme disease will tell you is how debilitating the condition can be. If you think you or a loved one could have come into contact with one of these deer ticks, start looking for target-shaped rashes and book an appointment with your doctor as soon as possible.