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

When a Glass Heart Shatters

In September I asked this question and I meant everything that follows.  I'm posting it now because I think a lot of people go through life shatterings and feel alone and don't know what to do about it.  So, here is what I lived through:

What do you do with your life when your heart has been shattered into thousands of jagged pieces of broken glass?  All of them crumbled into a glittering heap of broken dreams that were once shiny and new, now lying flat on their faces in the road tarnished by dirt and no longer reflecting hope.

Some people have advised gathering all these jagged pieces of your heart together, picking them up and continuing down the same path you were on before.  I've looked at all their sharp edges and balked.  Gathering them up will only cut up my hands.

There is no mending of broken glass.  It's broken, it can't be put back together, picking up the fragments is dangerous to the safety of the rest of me.  I don't need to bleed from other places while I try hopelessly to salvage broken portions of my heart.

Over the last few years, I've sort of put a fence around my heart.  Caution tape and orange plastic fences around the scene of the accident.  Head on collision, lots of broken glass all in a heap.  Every so often on weekends, I stop by to marvel at the wreckage.  Even less often I come prepared with gloves and tweezers and I stoop down close to the pile.  I'll gather up two pieces of glass and glue them together and then leave them off to the side.  Maybe one day they'll function again, but I don't hold my breath.  There is one chunk of my heart still functioning and I've left it in there for examination by experts at the scene.

When these experts are on shift they do detective work and try to figure out where things went wrong and I more or less give the whole thing a really wide berth.  I don't walk the same path anymore.  I don't do the same things.  I've essentially left my heart in it's crumbled little pile and carried on with the one chunk I have left.

What's the point of picking up the pieces?  The world isn't what we want it to be.  It's not our bloody oyster.  It's the way it is.  Cold, impersonal, brutal and real.  It doesn't care if your heart gets involved in a twenty car pile up on the freeway, or is beaten with a bat, or gets thrown against a wall at the end of a relationship.  Whether you've lost someone, lost a dream, lost a whole life, lost all hope, it makes no difference.  The world is just the way it is and stumbling around brokenly carrying bloody handfuls of shattered glass isn't going to change that.

No, you can't just go on.  You'll never be the same.  Even if you miraculously managed to piece together your heart and glue it together with a billion uneven fractures into a whole heart you wouldn't be the same.  Even if you gathered every tiny sliver of glass up and not a single piece was left lying in the street you wouldn't be the same.  You would always have the scars, the fractures that were just a little bit weaker, the chance you could shatter again more easily, and the memory.  Even if you melted all of your glass fragments down and reformed them again you would remember that once they laid shattered in a heap, alone, broken, hopeless in a gutter.  And you would feel more fragile for it.

So knowing this, knowing all of this and looking at the sad pile of broken glass on the ground that used to belong to me, what do I do?  Solitude is calling to me but it offers no respite.  It calls in the way that solitude calls to a wounded animal.  It wants me to slink off to a solitary place and hope for a peaceful death.  My wounds, however, are not fatal.  They are of the marring variety, the sort that almost make you wish you'd died but leave you unmercifully in a state of sadly altered life.

Never.

The word that caused this shattering with a single blow.  It's finality gripping and crushing and harsh.

So where do you go from here?  Part of my life has ended violently, shattered and gone.  I see it lying there hopelessly fractured.  How can there be a forward now?  My cat nature tells me that I cannot go either forward or back.  That leaves me left and right.  But both options seem hopeless when faced with the jagged remains of what used to be a heart and the dreams that are gone forever.

Maybe I will lie here, curled up near the scene of the crime and wait for an answer on what comes next.  I hope God is listening because he is also involved in this wreck.  But I have lost hope that he will answer.

So, what do I do? 

If you want to know what I did with my life and my heart in the months that followed, the continuation post: Mending a Heart of Glass, will be posted soon.

On the Beauty of Showers

Sometimes a person just needs a shower.  Maybe you need a nice long shower because your family can get on your nerves but they can't follow you in the shower.  Or maybe it's because warm water just makes everything better.  Or maybe it's really just that you feel antsy because you really desperately need to feel clean.

Whatever, the reason, sometimes you just need a shower.  It refreshes you, cleans you and somehow freshens your mind and attitude.  Sometimes, after a long day of gardening, being slobbered on by dogs and arguing with your family you just need to hop in the shower and clean yourself off and start all over.

It's remarkable how many ailments can be cured by a shower.

• Headaches - cured
• That crawly feeling you get if you saw a spider too close to you but can't see it anymore - cured
• Dry eyes- cured
• The feeling of being encased in slime after a particularly slobbery dog kiss - cured
• Dry cough - cured (well at least temporarily) 
• The "my hands will never be the same again" because I've been gardening all day feeling - cured
• If you have a cold and your head is stuffed up - temporary cure
• The "ugh I'm disgusting I can't go anywhere" feeling induced by dirt and dirty hair - cured
• Exhaustion - cured (at least long enough to make and consume dinner before slowly melting into bed)
• "I just got a haircut" itchiness - cured
• Early morning "I hate the world because it's too early" syndrome - almost cured (and that's saying something)
• Exercising is the worst thing ever I'll never do it again feeling - cured (again impressive)
• The sand and salt from my beach trip is weighing me down feeling - cured
• Feeling too cold - cured
• Muscle soreness - cured
• The feeling of being encrusted with a sparkly skin disease a.k.a. glitter - cured
• The "I'm too old for this ****" feeling - cured

Ok, so they aren't really a list of ailments.  But look at how many feelings that masquerade as ailments can be cured by a simple shower.  Really, showers might be the best. 

Ok, lauding of showers complete.  I'm going to go take one and cure my malaise.  

The Heart is the Final Frontier

Be Brave Timid Explorer

Space may seem like the final frontier but the truth is that this distinction lies a bit closer to home than we may want to admit.  However you choose to define frontier, I believe the word aptly characterizes the heart.

Frontier can be defined as:
1. the far-flung limits of knowledge
2. a region of sparse habitation, or
3. a border between countries

I assert, dear reader, that the heart is more mysterious to an individual than any number of complex mathematical equations and questions of science.  A person with a PhD in theoretical Physics will understand things that even the mention of would make my poor brain ache.  And yet, even such a lofty scientific mind could still be utterly baffled by the heart.  Their own heart could betray their rational mind and seem as foreign and bewilderingly complex as any intellectual discipline ever could.  I suggest to you, dear reader, that the heart is the final frontier.

1. the far-flung limits of knowledge
The heart is at the far-flung reaches of our understanding.  No matter how knowledgeable you or I happen to be in a particular field of study, we can still be caught unawares by our hearts.  I don't know about you, but I have often been confused and frustrated by my heart.  There have even been a rare few moments in my life where the realisation of what my heart wants has made my breath catch in my throat.  But the worst of all, are those days I feel lost and restless because I cannot even tell what it is my heart wants; knowing only that it desperately seeks something.  Something I can't quite grasp.

2. a region of sparse habitation
And it's not like there are any road maps in there because the second definition is also true.  The heart is sparsely populated.  It's just you and that crazy desire for whatever it is your heart has decided you need.  There are no friendly locals to point you in the right direction.  You and your heart just have to wander around in your solitary desert til you figure it out on your own.  And trust me, the longer you are lost, the more your heart thinks it's dying.  It certainly feels like an inhospitable desert place in a broken or lost heart.

3. a border between countries
Let's face it, the heart is the border between two completely separate countries.  It is the border between rational and irrational thought.  It is an individual's private frontier.  The battle between head and heart is not new to many people, and yet, it is still as violent and hotly contested as it ever was. Perhaps the real struggle of adulthood is deciding which battles to fight.  It is a lucky individual indeed that has a very quiet border at the edges of the heart's kingdom and the crossroads of reason.  Maybe it is only my experience in life, but it is very rarely that my heart desires things that my rational side can agree with.  More unfortunately, my heart very often wants what it absolutely cannot have.

And why is that?

Why does my heart seem to only want those things it cannot have?  No, want is the wrong word.  It is too tepid.  Yearn is more like it.  Why do I desperately yearn for opportunities and realities that cannot and never will be mine?  Why can the heart not accept it's own fate and calm down for just a few minutes in it's restless beating and longing for the things that cannot be?  My heart and head are almost always at war with each other.  Perhaps it is true of all of us.

Courage of the Heart?
In the end, you almost have to admire the heart.  I mean, it has a single mindedness to it's longing that is almost courageous.  Well, it could be called courageous in other people at least.  Maybe you could call it courageous in yourself if it wasn't making you so miserable.  A body could almost learn to resent their heart some days, what with all the sleepless nights spent tossing and turning, pondering the things that might have been, or could still be; the way that miracles could still bring about that one thing you long for so desperately.

Bleary-eyed, coffee-filled doses of morning reality could understandably reduce even the most rational person to hateful thoughts toward their softer side.  If only they were colder hearted, less of a dreamer, more rational, they silently chastise themselves over sips of piping wakefulness...  If only they were these things, they sigh with resignation, they might sleep better, feel less weary and less plagued by life.  If they weren't so irrational they might feel less at war with themselves on the border between desire and reality; less lost in the wilderness of emotional turmoil.  If only they could turn the heart off or around and care about something practical and achievable.

But Nooo!

The Heart Wants What the Heart Wants
The heart wants what the heart wants.  Everyone will tell you this.  They quote Emily Dickinson as if it explains everything away.  But they forget the rest of the line.  "The heart wants what the heart wants, or else it does not care."  The hearts wants, or else...  If the heart doesn't get what it wants it throws a perpetual tantrum to make you miserable because no matter how you wish it otherwise, you just can't care about things your heart doesn't want.  And, if you remember, the heart is at the far-flung limits of our knowledge and it's sparsely populated.  So, you're alone in there with your heart throwing a tantrum that you have absolutely no idea how to stop.  You just get to sit in your barren desert of a heart, all alone, until it finally loses the energy to throw such a monumental tantrum.  This, depending on the tragedy or misfortune, could take days, or even years.  Years of feeling more alone and isolated and desolate than you can even imagine. (That is, more desolate than your rational side would think possible, when it finally has control.)
 
Follow Your Heart?
People will quote this line to you; "The heart wants what the heart wants" they say.  They will do so in a flippant matter like this single quote explains everything.  Well, of course you're miserable the heart wants what it wants.  It will pass.  Or they sometimes manage to imply that you should follow your heart.  But neither of these sentiments are of comfort.  Why does the heart want what it wants?  Why can't it want something that it already has, or something that it could have?  Why must it long for those things it cannot have?  You cannot simply follow your heart when the object of your heart's desire is, in actual fact, impossible.  You may want to sit on the edge of the moon and breathe freely, but it doesn't mean you can.  You may wish for one more hour with a loved one, but no one can turn back time.  You may wish for eight arms, or a new personality, but you cannot snap your fingers and be a different person.  And, no, your misery does not get better by simply acknowledging that the heart wants what it wants, or that it cannot have it.  You already know these things.  Misery doesn't come from your lack of knowledge.  Misery comes because your heart is simply incapable of caring about daily life or anything beyond the one impossible desire it is yearns for.  So, you sit and wallow in your state of uncaring for anything else, because the heart doesn't compromise.  It wants what it wants OR ELSE.

Emily Dickinson knew this.  But those people who quote the first part of her line nearly always forget the second and darker truth.  Emily, they frequently forget, was a woman much beset by grief.  She knew intimately the depths of a heart's pain.  She watched many loved ones and friends die in her lifetime and she struggled with deep depression.  Her line is not a flippant statement that sometimes your heart is unhappy but you'll get over it soon it enough.  There is no "soon enough" for some pain.

Your heart does not simply let the head win or stop wanting impossible thing in exactly two weeks time.  You cannot sit your heart down and lecture it saying "Enough is enough", or "Come, now let's be rational.  Things aren't going to change.  Let's make the best it".  No.  Your heart won't listen.  It doesn't care.  No amount of reasoning with yourself and your heart makes the pain go away.  No amount of reasoning helps your heart to care about anything else when it sees no hope and no future of happiness.  The heart cannot be appeased by mundane trivialities.  The pain settles in for a long and merciless winter hibernation; the sort of winter that perhaps there is no waking up from.

Heartbreak, heartsick, heavy heart, heartache.  Why do you think there are so many words that have to do with temper tantrums of the heart?  And this doesn't even include the wealth of words to describe the emotions including anguish, sorrow, and misery.  Everyone deals with grief and heartbreak at some point in their lives.  Sadly, as the heart is at the limits of our understanding, nobody has figured out a way of making these times any easier.  The heart has a great capacity for joy and love and caring, but if it doesn't get it's way you may have a long road of apathy and anguish ahead of you.

Don't Follow Your Heart
A lot of soul searching, or heart searching if you will, has led me to the conclusion that I do not even know my own heart.  It has layers of wishes and desires, some of them obvious and others latent, hidden even from my own awareness.  I think that the best way to be at peace in life is to somehow reach a balance whereby your heart concedes that current circumstances are not permanent and that hope for future happiness is always a possibility no matter how bleak the day may be.  Letting the heart live in the moment and focus only on despair is too dangerous.  Hope can be a tricky ally, but it is far better than the heartache of despair.  I am not an expert on these things and I still get caught unaware by the sudden tantrums of my heart's desires and apathy... but I am trying.  Trying to understand.  Trying to work towards hope.  Trying to lead my heart out of darkness, but never follow it there.

My advice?  Don't follow your heart.  It doesn't know what it's doing.  Prepare yourself for battle on the frontier between your heart and your head and remember that you will be going in alone, dropped behind enemy lines with no intelligence or maps.  All you will have is your wits and your desire to survive whatever storm your heart is experiencing at the moment by sheer determination and perseverance.  It won't be easy.  But don't give up.

The Heart is a mysterious creature and despite the fact that nobody has figured out how to neutralize it, you probably wouldn't want to live life without it anyway.  No matter how dark today may be.  Chin up, have courage.  If you cannot manage to care about anything in the world today just remember that you are not alone.  We have all been lost in the depths of our heart's despair at some point or another.  If you're lost there now, just allow yourself to be sorrowful.  Tomorrow you can work on finding just one thing in the world that is not bad.  Perhaps the sunlight through a flower, or a best friend's company.  Tomorrow you can slowly try to remind your heart that the world hasn't ended.  Today, you're allowed to just be sad as long as you don't give up altogether.

So, farewell, dear reader, and be brave in your explorations into the final frontier, the Heart.