The controversy surrounding chronic Lyme disease in the medical community

Health

BROOKLYN, N.Y. (NewsNation Now) — A 17-year-old girl and her doctor continue to battle her chronic Lyme disease from a tick bite years prior and controversy in the medical community.

In 2015, Julia Bruzzese was an active, outgoing 11-year-old, but in May of that year, her health took a turn for the worse.

“From then on, it was hospital to hospital, undiagnosed, misdiagnosed,” said Julia. “Nobody knew what was wrong with me.”

For several weeks Julia had fevers, vision problems and body aches. She told NewsNation she couldn’t even speak. Her father thought she could have Lyme disease, but he explained initial tests at hospitals said otherwise.

“I was told that it can’t be Lyme because she’s tested negative to Lyme. So I believed them. I kept Googling all these symptoms that Julia had,” her father Enrico Bruzzese said.

Enrico said doctors took his daughter’s blood, but couldn’t find any antibodies for Lyme. Despite the results, he still believed she had the illness.

For a year, her symptoms got worse. She couldn’t go to school and her dad quit his job to care for her at home.

“I think we all thought I was dying,” Julia said. “I couldn’t feel my whole body. I had high fevers, losing my hair.”

“I’m fighting to get Julia’s life back, you know I am losing terribly. It’s not just the medical society I’m fighting, I’m fighting the Department of Education, I’m fighting the pharmacies,” said Enrico Bruzzese.  

His insurance at the time would not cover treatments because Julia tested negative for Lyme disease, but she held onto hope.

By chance, she was able to meet the Pope in 2015 for a blessing. That meeting caused her story to go national.

Courtesy: Bruzzese family

“I went there that day hoping for a miracle. I kept saying he’s going to make me walk. I know he’s just going to give me a miracle,” explained Julia.

Now in 2020, she is still unable to walk. But she told NewsNation her miracle came in a different form.

“After meeting the Pope, a doctor reached out, another Lyme disease specialist offered to treat me for free,” said Julia.

Dr. Richard Horowitz still treats her.

“The primary controversy is about testing diagnostics and persistence,” Horowitz said. “Those are probably the two biggest controversies that we face. The problem is that the tests are not reliable. They rely on antibody tests. There are many different strains of the bacteria which are not picked up by just one test.”

He told NewsNation that new tests are better at diagnosing the disease, but controversy still surrounds persistence of the disease.

He believes the disease can linger on for decades in some cases.

“There are these forums of Lyme disease called persisters in biofilms. And this has come out in the last 7 or 8 years and for me, this has been a turning point where I’ve now developed treatments that are very effective,” said Dr. Horowitz.

The majority of Lyme disease cases in the United States happen in the Northeast, according to the Centers for Disease Control and Prevention.

Each year, approximately 30,000 cases of Lyme disease are reported to CDC by state health departments. But the testing methods are not all the same. The CDC estimates other methods suggest that about 300,000 people may get Lyme disease each year in the United States.

Very little scientific data that reveals a definite answer on how chronic the condition can be and if someone with no antibodies for Lyme could have it.

The condition was first studied in the U.S. in the 1970s. David Royston was one of the first patients. However, unlike Julia his condition was mild.

“I discovered what was a red circle on my inner thigh and it stayed there for 2 or 3 days. I didn’t know it was a bite,” David Royston said. “There was no particular pain associated with it, other than when I had physical activity particularly skiing or basketball, softball which I played my left knee would swell up.”

Dr. Allen Steere was one of the original doctors to discover and study Lyme disease. Through his research, he was able to identify symptoms.

“And it can spread widely at that point and a person in whom that’s happening may feel pretty sick. So there could be symptoms at that time like fever, headache, neck stiffness, muscle, pain and achiness,” Dr. Steere said.

Recent data from the CDC shows early symptoms of Lyme disease is an Erythema migrans (EM) rash:

  • Occurs in approximately 70 to 80 percent of infected persons
  • Begins at the site of a tick bite after a delay of 3 to 30 days (average is about 7 days)
  • Expands gradually over several days reaching up to 12 inches or more (30 cm) across
  • May feel warm to the touch but is rarely itchy or painful
  • Sometimes clears as it enlarges, resulting in a target or “bull’s-eye” appearance
  • May appear on any area of the body
  • Does not always appear as a “classic” erythema migrans rash

According to the CDC, later symptoms include:

  • Severe headaches and neck stiffness
  • Additional EM rashes on other areas of the body
  • Facial palsy (loss of muscle tone or droop on one or both sides of the face)
  • Arthritis with severe joint pain and swelling, particularly the knees and other large joints.
  • Intermittent pain in tendons, muscles, joints, and bones
  • Heart palpitations or an irregular heartbeat (Lyme carditis)
  • Episodes of dizziness or shortness of breath
  • Inflammation of the brain and spinal cord
  • Nerve pain
  • Shooting pains, numbness, or tingling in the hands or feet

“In involvement of the heart, there have been fatal cases. So these can be serious manifestations,” said Dr. Steere.

Although Dr. Steere agrees the symptoms of Lyme disease can be severe, he said scientific evidence does not lead him to believe in a chronic Lyme disease condition.

“A wide range of illnesses in which the cause is not clear or in which the symptoms are medically unexplained are now sometimes called chronic Lyme disease, even when testing does not support that conclusion. There is a whole industry (including certain physicians) that has grown up to support this diagnosis,” explained Dr. Steere.

For Julia, her main desire is to see more research that could reveal the wide scope of this disease, who it effects and for how long

“There just needs to be a change. There needs to be more awareness about Lyme disease,” said Julia.

Dr. Horowitz told NewsNation that he has created a possible treatment plan for Chronic Lyme disease and proof that it exists. He is working to get it published in a medical journal soon.

Lyme disease is an infection caused by the bacterium Borrelia burgdorferi. In the majority of cases, it is successfully treated with oral antibiotics. In some patients, symptoms, such as fatigue, pain and joint and muscle aches, persist even after treatment, a condition termed “Post Treatment Lyme Disease Syndrome (PTLDS)”.

The term “chronic Lyme disease” (CLD) has been used to describe people with different illnesses. While the term is sometimes used to describe illness in patients with Lyme disease, it has also been used to describe symptoms in people who have no clinical or diagnostic evidence of a current or past infection with B. burgdorferi. Because of the confusion in how the term CLD is employed, and the lack of a clearly defined clinical definition, many experts in this field do not support its use.

National Institute of Allergy and Infectious Diseases

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