Lyme Disease is Under Reported, Under Treated and Under Funded.
It is widely believed that Lyme disease is under reported. The CDC estimates there are 300,000 new Lyme cases every year, ten times the annual reported cases. An article by the Bay Area Lyme Foundation sates that 2019 saw 400,000 new cases.
This doesn't include all the misdiagnosed and undiagnosed cases every year. And considering that
Lyme Disease is actually present in all 50 US States, but 96% of the cases reported to the CDC are from only 13 states from the Northeast and Upper Midwest.
An article titled Misdiagnosis of Lyme disease problematic has a number of interesting statistics:
"Of 6,104 patients who responded to a 2015 survey, 61% said it took more than two years to receive a correct diagnosis. Only 21% reported being correctly diagnosed within six months of the onset of symptoms, the report showed. Almost half of respondents said their Lyme tests were delayed or denied because their physicians said the disease was not in their area."
If many doctors don't even test for Lyme disease because they don't believe it's present in their area, and misdiagnosis can lead more than half of those with Lyme disease on a wild goose chase, it's not a stretch to think that many more people have Lyme than even the 400,000 known cases every year.
Eugene Shapiro, MD said in an article about Lyme's incidence rate that "Another striking number is that there were 3.4 million assays done for Lyme disease at six major national laboratories, clearly an underestimate of the number of tests done nationwide."
3.4 million tests done for Lyme at only six of our major laboratories. How many tests are run throughout all our laboratories every year? Now, he claims that Lyme disease is being over tested for. But considering how poor the tests are and how long people wait to get a proper diagnosis, perhaps it's not being over tested. And knowing how notoriously inconclusive Lyme Disease tests are, how many cases are there really?
My suspicion is that the numbers are staggeringly larger than we even realize. For instance, according to Bay Area Lyme our current diagnostic plans miss up to 60% of acute cases. Just think how many cases we are missing in the end.
Now I promised you Covid-19 comparison and you shall have it.
As of today, October 7th, the US has 7.7 million reported cases of Covid-19 and 215,849 thousand deaths. I'm not in any way trying to say that this isn't horrible, but I'm trying to highlight the numbers for you. In an article by John Hopkins it said that "researchers found that more than 63 percent of those treated for Lyme disease had at least one PTLDS-related diagnosis." More than half of the people with Lyme show evidence of having Post Treatment Lyme Disease. So if we have 400,000 new Lyme cases every year that's roughly 200,000 people every year who get Lyme and aren't getting better.
Imagine if all the Covid-19 deaths we have seen this year were sudden and chronic illnesses instead. We've all been following the devastating numbers of Covid-19 this year, but Lyme is never talked about. People who suffer from Lyme struggle to even get a diagnosis or recognition that they are suffering.
Like Covid-19, Lyme is not very well understood. We don't have a great understanding of how it works, how to cure it. If roughly half of the people who come down with Lyme end up with Chronic Lyme, we clearly aren't doing a good enough job treating it.
Phyllis Mervine, the Founder and President of LymeDisease.org had this to say about Lyme "Like COVID-19 patients, people with Lyme need treatments now. Clinical trials are expensive and take too long, and our last one was 20 years ago. Also, Lyme disease research receives less federal funding than leprosy, which has 200 cases per year."
Covid-19 has shaken us and demanded prompt action which is completely warranted for the 215.8k deaths already, but Lyme disease gets no press, no funding and no support with roughly the same number of people, 200,000 people, becoming chronically ill every year. Leprosy gets more funding for 200 cases a year than a disease that causes roughly 200,000 people every year to deal with chronic illness. That's just absurd.
In an article about post-treatment Lyme "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." This is a cumulative number of cases, but it's still a staggering number. Nearly 2 million people in the US may have Chronic Lyme and not many doctors even believe it exists, let alone know how to treat it.
I think it's time that we start recognizing the incredible numbers and cost of Lyme Disease. We can't let "medical politics" keep ignoring Lyme Disease and pretending that Chronic Lyme isn't a thing. We must keep fighting for awareness and recognition and our health.
Reference materials:
https://www.lymedisease.org/mervine-comments-tbdwg-2/
https://www.smithsonianmag.com/smart-news/lyme-disease-is-ten-times-more-common-than-we-thought-1895064/#:~:text=Each%20year%2C%20more%20than%2030%2C000,than%20the%20yearly%20reported%20number.
https://www.health.harvard.edu/blog/lyme-disease-10-times-more-common-than-thought-201308206621
https://www.bayarealyme.org/about-lyme/lyme-disease-facts-statistics/
https://www.nurse.com/blog/2015/07/01/misdiagnosis-of-lyme-disease-problematic/
https://www.worldometers.info/coronavirus/country/us/
https://covid.cdc.gov/covid-data-tracker/#cases_casesinlast7days
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6480773/
https://www.hopkinsmedicine.org/news/newsroom/news-releases/study-shows-evidence-of-severe-and-lingering-symptoms-in-some-after-treatment-for-lyme-disease
https://www.jhsph.edu/news/news-releases/2015/lyme-disease-costs-more-than-one-billion-dollars-per-year-to-treat-study-finds.html
For Other Posts about Lyme Disease see the following:
How to Find the Right Doctor for Lyme Disease
How can you be Certain you have LYME DISEASE?
Lyme Disease a List of Symptoms
Lyme Disease the Great Masquerader of Diseases
I Feel Like I'm Playing Lyme Roulette
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