Estimation of cumulative number of post-treatment Lyme disease cases in the US, 2016 and 2020
- Allison DeLongEmail authorView ORCID ID profile,
- Mayla Hsu and
- Harriet Kotsoris
BMC Public Health201919:352
Published: 24 April 2019
Lyme disease (LD) is an infectious multi-system illness caused by the bacterial genus Borrelia and spread by bites of infected ticks. Although most patients are successfully treated by timely antibiotic therapy, it is broadly accepted that a sizeable number of patients experience treatment failure and continue to suffer long-term, debilitating symptoms, including pain, fatigue, cognitive dysfunction and other symptoms. This is known as post-treatment LD (PTLD), for which diagnosis is not standardized and treatment remains controversial. The prevalence and societal burden of PTLD is unknown.
In an effort to help characterize the LD landscape, we estimated the number of PTLD cases in the US in 2016 and 2020 using Monte-Carlo simulation techniques, publically-available demographic datasets, uncertainty in the inputs and realistic assumptions about incidence and treatment failure rates.
Depending on the input assumptions, PTLD prevalence estimates for 2016 ranged from 69,011 persons (95% CI 51,796 to 89,312) to 1,523,869 (CI 1,268,634 to 1,809,416). Prevalence in 2020 is predicted to be higher than 2016, and may be as high as 1,944,189 (CI 1,619,988 to 2,304,147) cases.
The cumulative prevalence of PLTD in the United States is estimated to be high and continues to increase. These findings will be of interest to epidemiologists and health economists studying disease burden in the US and elsewhere, and justify funding to study PTLD diagnosis and treatment.
Again, this study uses the falsely skewed subgroup of 10-20% that have been diagnosed and treated early being called post Lyme treatment disease (PLTD). It does not include the 30-40% of us who are diagnosed and treated late. Much work needs to be done with this group. Virtually no research has been done to date on patients diagnosed and treated late. When you add the two groups, a whopping 60% go on to have symptoms. Research dollars should be commiserate with the amount of people affected and in this case, it’s HUGE.
“The Syndrome post-treatment of Lyme disease (PTLDS), which is nothing more than the ‘chronic symptoms’ of the disease, is being used perversely to cover the reality of this disease, avoid coverage by health insurance, and tell patients: ‘you have nothing, go to a psychologist’ … when their blood and brain are sailing in a sea of Borrelias.” Dr. Lapenta