Lyme disease treatment costs reach $1.3 billion


BALTIMORE — Lyme disease, transmitted by a bite from a tick infected by the Borrelia burgdorferi bacteria, had long been considered easy to treat, usually requiring a single doctor’s visit and a few weeks of antibiotics for most people.

But new research from the Johns Hopkins Bloomberg School of Public Health suggests that a prolonged illness associated with the disease in some patients is more widespread and serious than previously understood.

With an estimated 240,000 to 440,000 new cases of the tick-borne illness diagnosed every year, the researchers found that Lyme disease costs the U.S. health care system between $712 million and $1.3 billion a year — or nearly $3,000 per patient on average — in return doctor visits and testing, likely to investigate the cause of some patients’ lingering symptoms of fatigue, musculoskeletal pain and memory problems.

These visits come after patients have finished their original course of antibiotics. Some doctors call those persistent symptoms post-treatment Lyme disease syndrome; others call it chronic Lyme disease. Still others attribute the complaints of fatigue, headaches and memory problems to the hum of daily life, the aches and pains that come with aging.


Controversial topic

At the core of the controversy is whether PTLDS can be a severe and chronic condition that requires more than reassurance and symptomatic therapy. While a blood test can confirm Lyme disease, there is no definitive test for PTLDS and there are no approved or proven treatments.

It’s a controversial topic in medicine, the Johns Hopkins researchers say. A report on the findings was published online Feb. 4 by the journal PLOS ONE. Study author Emily Adrion and her colleagues looked at medical claims data from approximately 47 million people enrolled in a wide range of commercial health insurance plans in the United States between 2006 and 2010. The researchers ended up analyzing 52,795 cases of Lyme disease patients under the age of 65 who had been treated with antibiotics within 30 days of a Lyme disease test order and/or Lyme disease diagnosis.

The data were compared to nearly 264,000 other similar people with no evidence of Lyme disease exposure.




The researchers found that, on average, people with Lyme disease cost the system $2,968 more than matched controls. They had 87 percent more visits to the doctor and 71 percent more visits to the emergency room within the year following diagnosis. Those with Lyme disease were nearly five times more likely to have any PTLDS-related diagnosis — fatigue, nerve pain, joint pain, cognitive troubles — within that year and were 5.5 times more likely to have a diagnosis of debility and excessive fatigue.

Among those with Lyme disease, having one or more PTLDS-related diagnosis was associated with $3,798 more in health care costs as compared to those with no post-treatment symptoms.




Lyme disease is named after the town in Connecticut where it was first recognized in 1975. It now hits its peak in June and July and is found from Maine to Virginia along the East Coast of the United States.

The tick causes a skin reaction that resembles a bulls-eye or spider bite. If left untreated, Lyme disease may lead to neurologic and rheumatic symptoms weeks or months later.

Treatment with the antibiotic doxycycline is associated with a more rapid resolution of early signs of infection and prevention of the majority of later symptoms, the researchers say. Still, some patients report symptoms lasting for weeks, months or years beyond completion of the original antibiotic regimen.

There is no approved therapy for these patients and the magnitude of the problem in the U.S. population has never been systematically studied. The Centers for Disease Control and Prevention estimates 10 to 20 percent of those treated for Lyme disease with the recommended two-to-four week course of antibiotics continue to have symptoms.

But, in the new study, the researchers found that more than 63 percent of those treated for Lyme disease had at least one PTLDS-related diagnosis — a rate 36 percentage points higher than those who did not have Lyme disease.

The study’s lead author John Aucott, MD, an assistant professor of rheumatology at the Johns Hopkins University School of Medicine, says it does no good to keep debating the existence of long-term problems related to Lyme disease while people are suffering a debilitating illness. And he says that increasing awareness of potential complications is crucial to avoid misdiagnosis and unnecessary medical testing.


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  1. The south( including Florida) remains in the dark ages as to being aware of Lyme disease being very present here. Thus——-cases are not being diagnosed early and very often resulting in misdiagnoses and patients not receiving appropriate medication and often winding winding up with “chronic” Lyme.

  2. Many of the tick borne pathogens within that tick can produce chronic infections. No one can dispute that Mycoplasmas, Chlamydias, Coxiella burnetti or Brucella can be chronic infections and they are all part and parcel of the myriad of pathogens injected from a tick. We have not even scratched the surface of the plethora of bacteria, viruses, protozoans and other parasites within so called lyme patients. Time to do some DNA sequencing and once and for all come up with a game plan to effectively treat all these infectious agents. One young man suffered for years until DNA sequencing showed that he had Leptospirosis. There are very ill people being mistreated by the medical community.

    • Having been bitten in 1964 in southern Nova Scotia, and again in 2002 in NE PA,
      I can attest to the long term and multiple effects of chronic Lyme, with all its cycles and mysteries. I.E. How come I had fatigue so often, plus early aching joints in my early 30s, and so many other symptoms it’s hard to recall them all? The 2nd bite and its now familiar SXs got my LLD doc and me to understand this longstanding set of problems, including cancer in my late 50s. And the fatigue goes on, even after 6 years of antibiotics to deal with BB, Erlichia, Babesia and Bartonella. My own costs continue for the many supplements needed to somewhat offset the chronicity. I’m all for DNA and much more rigor put into research that goes somewhere.

  3. Borrelia compromises the immune system and seems to facilitate the entry into the cell for other bacteria. Rickettsias seem to be one of the culprits here. Rickettsias are one of three causes of Waldentrom’s Macrogloubulinemia and there are other cancers caused by these pathogens. Also time to fess up and tell the truth about that as well.

    Very interesting article that talks about immune compromisation of both cellular and humoral immunity and the auto antibodies that they found in lyme patients. People near me have autoantibodies to mitochondria and anti parietal cells of stomach, which produces intrinsic factor necessary for absorption of B 12. … Also interesting is that anti parietal cell antibodies and Hashi are mentioned elsewhere. Anti parietal cell antibodies are also discussed vis a vis infection with H. pylori. Atrophic gastritis and lyme too. Daughter has anti parietal abs and I have Hughes Sydrome or APS and beta 2 glycoprotein 1 abs. High risk of PE and DVT.

    • what area of research or medicine do you work in, Dolores? Your replies sound erudite.And eerily similar to articles posted on some Dr’s website.


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