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Estimation of cumulative number of chronic Lyme disease cases in the US, 2016 and 2020

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Posted 4/27/2019 8:06 PM (GMT 0)
Methods
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.

Results
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.

Conclusions
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.

Estimation of cumulative number of post-treatment Lyme disease cases in the US, 2016 and 2020
Allison DeLong, Mayla Hsu and Harriet Kotsoris
BMC Public Health 2019 19:352
https://doi.org/10.1186/s12889-019-6681-9 © The Author(s). 2019
Received: 27 July 2018 Accepted: 19 March 2019 Published: 24 April 2019

Press:
https://bit.ly/2gnd6io
https://bit.ly/2xprevu
Posted 4/27/2019 9:24 PM (GMT 0)
I estimate the numbers are higher, if you look at all variables involved of all the tickborne infections (bartonella, RMSF, babesia, ehrlichia, borrelia, etc) i would expect it to be higher, since alot of those infections are not even tracked.
Posted 4/27/2019 9:30 PM (GMT 0)
It’s really alarming. I have spend over $5,000 treating, I’m so worried it will happen again! Is there anything to do to keep our bodies strong?
Posted 4/27/2019 11:07 PM (GMT 0)
I’ve spent at least $25,000 on appts and treatments (travel included) but by far the biggest financial loss has been the lack of income for past 5 years.
It’s criminal
Posted 4/27/2019 11:09 PM (GMT 0)

HeartsinPain said...
It’s really alarming. I have spend over $5,000 treating, I’m so worried it will happen again! Is there anything to do to keep our bodies strong?

The obvious : eat well, get good sleep, exercise, minimize stress and
then act quickly if you do relapse...
Posted 4/28/2019 12:08 AM (GMT 0)
That’s unbelievable Girlie, I’m so sorry you’ve had to spend some much on trying to get well. The $5,000 was most of my life’s savings, I have around $500 left which will be gone at my next LLMD appointment. I’m only working two days a week right now so I completely understand the loss of income. I hope both of us get to see the light at the end of the tunnel soon.
Posted 4/28/2019 2:04 AM (GMT 0)
This is assuming the estimates of cases are correct, and that only 10-20% have persistent symptoms. Those figures could easily double.
Posted 4/28/2019 5:27 AM (GMT 0)

1000Daisies said...
You don't want to know how much it costs to treat four in a family, which two are extremely difficult/challenging cases to treat and have failed many many many treatments in both mainstream/allopathic and alternative treatments.

You just don't want to know.

sad


Sorry Daisies - that’s got to be a challenge - in soooo many ways.


Oh and we didn’t have the $25 g so we’ll be working until we’re 70 years old I guess - IF I do get back to work
Posted 4/28/2019 3:07 PM (GMT 0)
the first year of diagnosis/treatment over $30K...year two has been significantly less.

the 10-20% statistic is complete BS, that number has no statistical merit. its more like 40-60%
Posted 5/1/2019 3:33 PM (GMT 0)

acarined said...
This is assuming the estimates of cases are correct, and that only 10-20% have persistent symptoms. Those figures could easily double.

The real number is probably quintuple or more than their estimates. I suspect they are only counting cases on the east coast and maybe the Great Lakes region. And they are probably only counting those that had bulls-eye and were treated early. We all know how many of us do not get bulls-eye and have "Late Lyme" or "untreated Lyme"...
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