Let's Put Lyme Disease in Perspective with Covid-19

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:

So, I have Lyme Disease

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

How Did I Get Lyme Disease?

Memory Struggles with Lyme

I Feel Like I'm Playing Lyme Roulette

Hope Writer Challenge - Reach

An enormous Italian Renaissance style sunset over my house for the #hopewriterlife, writing challenge for @hopewriters about Reach.

Reimagine 2020 with an Idea of Writing Reach and Change

Italian Renaissance Style Sunset over San Diego

The moment I begin to reimagine this year I start by imagining it without cornonavirus.  My very next thoughts are of comparison, reflecting on the deep differences we see between now and the years we've known of late.  So, for me to reimagine this year with the themes of writing and reach in mind I must compare my present with the recent past.

Writing for me has always been something I must do on occasion when I can't sleep.  My mind runs mad with stories or turns of phrase that demand to be recorded.  Sometimes writing is how I process my world and thoughts, and it's the only thing that keeps me from falling to bits.  All of this is to say that writing had been a deeply internal process for me and reaching any sort of audience with my writing has been a rather new thought.

Only in this last year I stated to notice that there is a part of me that wants to be seen and heard with my writing.  And as much as it scares me to bare pieces of my soul to the world thus, there has been a nagging thought that it is selfish of me to keep these pretty turns of phrase and hopeful midnight musings to myself.

I don't exactly have grand dreams of reaching an audience for myself.  There's a large part of me that's still frightened to be seen.  But when I think of the purpose of my writing, especially now, I think it is my purpose, my duty, to offer help with words in any way I can.

In these strange times I've been writing again, for a data center company of all places; offering hope that people and communities can and will take care of one another in these days of doubt and fear.  In this unlikely place, I have found the opportunity to bring messages of the way that our infrastructure connects us, instead of focusing on our distance.

That is not to say that I don't feel fear and doubt myself.  I too have been overwhelmed. I have had my share of anxious nights.  I have cried for myself and those around me, feeling our losses and our hardships keenly.  I simply choose, whenever I feel such emotions, to seek out stories that acknowledge pain and still uplift.

I have in my search found hope in the strangest places.  I have found large companies using their considerable Reach to send messages of hope, connection and perseverance.  I have seen neighbors help one another, offering the help and services they can.  I have seen people donating food and masks and supplies where they can.  I have seen people writing letters to friends and holding video chats to check in with one another.  I have been invited to free painting classes and seen many strangers advertise free counseling and tutoring during this time.  We are all offering what we can.

And it may not be seen as a lot by the eyes of the outside world, but together when we all offer what we can to anyone we can help, we all make the difference.  My reach my not be large.  The five masks I helped make may not be enough.  And the words I can offer may not be groundbreaking.  But together, that is where we have magic.

For the reach of one person is small, but with many hands and more helpers we can reach so much further. If I can help one person who can then help two more, together we can make all the difference. Doing our bit is all we can do. Even as we may feel isolated and alone, even as we feel powerless, if we find one way to help someone else shoulder the burden of this time we are doing our bit. And together we can change the world. 

Together our reach is infinite and we are unstoppable.

I wrote this on May 12th and I think it's more true than ever.  As I reread it this week knowing what turmoil we are in trying to address the blatant racism and tragedy we have all seen it only rings more true.  Individually we may be small, and our reach unimportant.  But together, with all of us doing one small thing, we can make the world a better place.  Together our reach is infinite and we are truly unstoppable.