Unpacking “Chronic” Lyme Disease


In an editorial piece published in the New England Journal of Medicine, Dr. Michael T. Melia, M.D., and Paul G. Auwaerter, M.D., note that up to 20% of patients with Lyme disease experience long-lasting symptoms of:

fatigue, musculoskeletal pains, disrupted sleep, and lack of customary mental functions.

But the concept of chronic Lyme disease is actually fairly controversial in the medical community. Despite the acknowledgement that persistent symptoms occur, doctors disagree about the causes, treatments, and even name of the condition. Can it be called “chronic,” or does that not fit the bill?

Lyme Disease

Commonly caused by Borrelia burgdorferi, a bacteria, Lyme disease is a tick-borne illness that impacts around 30,000 Americans each year. On the west coast, Lyme disease is spread by the western blacklegged tick. In the northeastern, mid-Atlantic, and north-central areas, the illness is spread by deer ticks. Generally, the ticks that spread Lyme disease are not yet in adulthood, but rather in a younger nymph stage.

The controversy surrounding Lyme disease appears even when discussing transmission timelines. While some doctors argue that a tick only has to bite a person for 24 hours to transmit Borrelia burgdorferi, others state that a tick must stay attached for at least 36 to 48 hours.

Patients may experience varied symptoms, the first of which appear within 3-30 days following transmission. These include:

  • Fever
  • Chills
  • Fatigue
  • Muscle and joint pain
  • Headaches
  • Swollen lymph nodes
  • A distinctive circular rash around the tick bite (erythema migrans)

In the days and months following the bite, particularly without treatment, symptoms progress to:

  • Rashes in other areas of the body
  • Severe headaches
  • Neck stiffness
  • Facial paralysis in one or both sides of the face
  • Abnormal heartbeat
  • Joint, muscle, tendon, and bone pain
  • Joint, brain, and spinal cord inflammation
  • Arthritis
  • Difficulty breathing / shortness of breath
  • Nerve pain
  • Muscle numbness

To reach a diagnosis, medical providers use antibody tests. Ultimately, this determines whether or not your body has antibodies to fight Lyme disease, which suggests infection.

Learn more about Lyme disease here.

Condition Complexities

Sometimes, despite treatment, symptoms of Lyme disease continue for an undetermined amount of time. For those with diagnosed Lyme disease, who used antibiotic treatment but still have symptoms within 6 or more months, the CDC refers to this as post-treatment Lyme disease syndrome (PTLDS).

However, others believe that the cause of the illness itself isn’t fully treated. For this reason, the International Lyme and Associated Diseases Society (ILADS) uses “chronic Lyme” to describe these cases. But here, the CDC and ILADS seem to butt heads. Because antibodies would be present in the blood regardless, there is no way to tell whether someone had Lyme disease (and is still having a reaction), or still actively has a bacterial infection. One potential theory is that patients are experiencing a continued immune response, despite the actual infection being over.

Another disagreement comes in the form of treatment options: are long-term antibiotics a good choice, or is there simply no treatment? Said Dr. Auwaerter:

“There’s just not any evidence to back [long-term antibiotics] sufficiently to treat my patients that way.”

According to the National Institute of Allergy and Infectious Diseases (NIAID), Dr. Auwaerter’s conclusions are correct. Prior studies have shown that neither intravenous nor oral antibiotics are effective in treating patients with chronic Lyme. Additionally, long-term antibiotic usage is linked to numerous health problems. However, ILADS notes that patients should be treated again with antibiotics if their symptoms are reducing quality of life.

Finally, some other doctors say that mixing homeopathy and antibiotics can be the solution to chronic Lyme. One such option? Ozone therapy, in which blood is combined with ozone before being put back into the body. At this time, there is no research on the efficacy of ozone therapy.

Diagnosing Chronic Lyme Disease

Is Lyme disease over-diagnosed or under-diagnosed? ILADS states that it is under-diagnosed. In fact, the group claims that doctors may mistakenly diagnose Lyme for chronic fatigue syndrome (ME/CFS). But, says Dr. Auwaerter, many patients are actually over-diagnosed with Lyme disease. He cites a study from Open Forum Infectious Diseases which notes that, out of 1,261 patients in one study, 72% (908 patients) didn’t have Lyme disease at all. Further, 80% (1,009 patients) had already been treated when they pursued additional help.

This brings up a real issue that many in the rare disease community know: feeling unheard. Typically, for patients with rare diseases or conditions, it takes years and innumerable doctors to finally receive a diagnosis. For those struggling with chronic Lyme disease, or at least what they believe it to be, they feel scared, frustrated, and unheard. Some may feel like doctors don’t believe what they’re actually going through.

As a result, Dr. Auwaerter urges patients to stay connected – and educated – during their push for a diagnosis. He advocates for more deeply exploring potential conditions with a doctor or internist; visiting a rheumatologist for pain; seeing a neurologist if experiencing migraines or headaches; and using infectious-disease doctors for blood tests. If a patient receives a negative Lyme test after chronic symptoms, they do not have Lyme disease.

But most of all, doctors advocate for only debating between themselves – never publicly. After all, we can argue the complexities all day, but the most important part? Improving patient lives.

Read the source article in PopSugar.

Jessica Lynn

Jessica Lynn

Jessica Lynn has an educational background in writing and marketing. She firmly believes in the power of writing in amplifying voices, and looks forward to doing so for the rare disease community.

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