Lyme Disease: Stories From the Front Lines of An Epidemic – Anonymous

This person insists upon not being named here. Prefers that I not even use any gender pronouns. This person has perhaps legitimate concerns about how posting any part of their story might impact their treatment and life at this juncture. So here is their story in their own words.


On October 31st, Halloween, of 2010, after eighteen years of living with Lyme, I decided quite consciously to make an end to myself. On November 1st of 2010, I died on the operating table. And was reborn four odd minutes later into a life that was even worse.

In 1992, I was an athlete, a gymnast and mixed martial artist who was working my way through my premed course work by working in the Appalachian mountains as a trail guide and a Search and Rescue First Responder.

I helped to find people who were lost, rescued people who had drunk or smoked a bit too much before going off into the woods, aided the unfortunate, the unlucky, and the simply stupid. My days and nights were very very busy and were almost exactly halved by studies and outdoor time.

In the state where I was working, there were two things that would conspire to my contracting Lyme.

The first was that the state is a “for hire” state where your employment can be terminated at any time and for any reason. The employers do not have to tell you why you are fired or even tell you in person.

The second was that Lyme Disease does not officially exist there.

So when I was bitten by ticks, which was often and often, I followed my employer’s medical safety policies – the real ones not the one’s posted in HR – and simply removed the ticks and said nothing.

And when I got sick after being bitten, as a premed student in a Lyme ignorant/denied area, I simply got treated for the Rocky Mountain Spotted Fever I obviously did have, and never even thought about it again. Why would I? The AMA, my premed teachers, my doctor mentor, and the CDC all teach that there is no Lyme in NC, the rare case of Lyme short-lived, and that the antibiotics I took for the Rocky Mountain Spotted Fever should have killed any possible Lyme off.

But then I began to develop neurological problems…memory loss, anomic aphasia, speech hesitancies, and inability to string together a sentence with a cogent coherency. Hearing loss. Vision problems.

And I was a by then a professional writer. One who could no longer read, write, or listen to an audio book. One that could not hold a plot line from chapter to chapter while trying to read even a Youth novel much less write for adults as I once did.

I could not write a sentence, much less a chapter. I lost my ability to describe what I saw, and then I lost the ability to see it.

And then I was diagnosed with Lyme Disease.

At first, I was relieved. This was not cancer, or a brain tumor, or early onset Alzheimers. Not CJD or some other severe neurological problem.

It was a bacteria and bacteria could be cured with antibiotics.

I was going to be back to normal soon and writing again and well on my way to being the next John Updike, John Irving, or Lewis Lapham.

I was so very relieved.

And then I started to get my first taste of what the Lyme world is really about.

Money, denial of care, politics, doctors who told patients that they were insane, doctors who would wave research papers at you and who would look over the books and articles I brought them (including Tabor’s Medical Dictionary – an AMA Bible that includes chronic Lyme!) and tell me that my disease did not exist. Worsening health, further decline, new symptoms. And more being bounced around like a pachinko ball from one doctor to one specialist to one psychiatrist to another doctor.

When I finally did find a Lyme Literate Medical Doctor, he explained to me how I was living in one of the worst possible states for Lyme Disease treatment. He told me his care options were very limited and that mine were thus circumscribed. He admitted that he could only offer me the lowest tier of treatments and explained that the really effective ones were illegal in my area of the country. He then added two other pieces of bad news….

that he charged twelve dollars a minute and that he did not – could not, dared not – take insurance or any government insurances. And that the treatment he had to offer was not effective against late stage neuro Lyme like mine.

My only options were to travel out of state to see an even more expensive LLMD or to accept a lower level of care that would keep me alive but would not allow me to actually live in any meaningful sense of the word.

I submitted myself to his care.

And got really and truly sick.

My body could not tolerate the oral antibiotics or most of the herbs. I threw up, evacuated my bowels, and even sweated toxins in great quantities. I quit sleeping altogether. There was blood in my urine and stools. I could not ever really think because the herxheimer die off effect left me feverish and weak all of the time.

But the intravenous medicines were not available to me so I had to persevere with the orals.

I received no supportive care whatever. I never heard about probiotics or detoxing or dietary changes from my diet. He never ran more than the initial tests. I did not know he was supposed to. And it was only two years later that I found out that this particular LLMD – although vetted and on the ILADS list of approved Lyme doctor also had a reputation for sleazy dealing, improper care and had been censured twice for endangering the lives of some of his non-Lyme patients by overprescribing dangerous pain or psychotropic drugs. It was only later that I heard he had killed one. Accidentally, yes, but dead is dead.

At that point, I swore off of doctors and plunged headlong into the deepest and darkest pits of despair you can imagine. I had no friends, had lost family, had lost my fiancee, had no income and no hope of receiving care as I could not afford it, nor afford to travel to even seek it.

I became a hermit. No, a curmudgeon of the worst sort. I attacked everyone near me and used what words I had left as weapons to drive people away.

And then in September of 2010, I began to quietly dispose of all of my material possessions. I gave things to strangers, I took stuff to Goodwills, I simply bagged my books and CDs and threw them away. I burned all my papers and all of my government documentation. I emptied my bank accounts and gave the money to panhandlers, churches, fundraisers.

I remember one day, I went to a booth for some charity I don’t even remember at some outdoor function and bought six tee shirts with the money in my wallet. When the woman told me where my money would go, I told her to go screw herself, I did not care what she did with the money, whether she used it for her cause or wiped her butt with it – but not that politely. And then I threw the tee shirts in the nearest trash can and did not bother to see if she would fish them out again.

Around the first of October, I bought a gun. It was a .22 caliber, bolt action, single shot rifle. I told the lady behind the gun counter that I was going deer hunting in November and also that I wanted a really simple gun that I could use to shoot the vermin around my very fictitious farm.

She was very helpful. Sold me their simplest model, and a scope, and some shells. She even gave me the paperwork for the local Hunter’s Safety Certification course and maps of the local legal hunting areas. I took these things and the scope, did the background check, and then picked the gun up later.

And on October 31st, with a rather macabre joy at the idea of how my tombstone would read, I took out the gun, cleaned it, loaded it, and then devised a way to fire it while the muzzle was against my chest – I had a horror even then of disfiguring my face, I wanted my family to have the option of an open casket – and pulled the trigger.

I must have flinched then because my aim was off. The bullet entered my chest about three inches from my left nipple and toward the edge of my body. Instead of puncturing my heart it punctured my left lung before tumbling around inside my chest a bit and coming to rest against the muscled outer wall of the plethora space my lung lived in.

A neighbor who heard the shot, and turned out to be a cop or fireman or something came over to my house and forced the door. He kept me alive until the paramedics arrived and they kept me alive by means of CPR and a chest tube until I got to the hospital.

I actually, literally died at the hospital, was revived, was flown to the nearest local major trauma center, and would eventually wake up under guard four hundred miles from home and in the worst pain of my life.

Lyme is a hideous horrible painful and debilitating disease but it does lack one thing a bullet wound has in force. Immediacy. Lyme kills at its leisure and devours you in small chunks, a bullet wound kills you quickly and if it does not, then it nonetheless makes it’s presence absolutely and immediately known.

Your life is not better after the bullet. You still have Lyme disease. You still have the brain damage. You still cannot focus or think or write. But now you also are a mental patient. You have to do the physical therapy. You have to deal with the social workers. The counseling. The group sessions. The psychotropic medications.

Lyme drove me to suicide, but even suicide was not an escape. At least not for me.

And you want to hear the really twisted part, the really scary thing?

I’m still not being treated for Lyme disease.

Not even in a slipshod fashion.

My LLMD refused to see me anymore after my “misadventure”. And every other doctor I see believes that I have some sort of severe mental illness that includes this delusion about Lyme epidemics and Lyme genocide. They have grounds for saying I am crazy now. Sane people do not shoot themselves with guns, after all.

So now I am actually even worse off and I have even fewer options to go along with my far greater pains.

And that’s my story.

You know what? Sometimes I think that maybe, just maybe, I’m not alive. Maybe the bullet killed me. Maybe this is Hell.

I dare you to prove to me it is not.

And all this shit started with one tick. One among many. One chance bite on a busy day when I still thought life was good and that doctors cared for people and that my government would never allow things like this to happen.

It all started in carefree ignorance, and it ended in ignoble defeat.

What would I say to the hypothetical reader, you ask?

Be angry. Be educated. Be careful.

And good freaking luck.


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