Bloody Lymey

A Blog About Living with Lyme Disease

Can Lyme Disease Kill You ? Part II

In my site stats, I’m seeing that this question is repeated over and over and over again and how it’s resulting in my blog being found by search engines.

The last time I wrote about lyme deaths, I mentioned that I found articles citing suicide as the number one cause of death.

I have done more reading and it is rare that lyme disease is listed on a death certificate as the cause of death. Some argue that this alone means it doesn’t kill anyone. In fact, many subscribe to this, looking no further.

In fact, if you google this question, many sites will simply say it’s “rarely if ever fatal.” Or “there is only one documented case of a human death from lyme disease.” Or “it probably won’t kill anyone.”

Other camps argue that people die from “pulmonary failure” but that the autopsying physician doesn’t list lyme disease as the cause of the condition. Some die from neurological complications and these complications are cited on death certificates as causes of death. However, these people were as healthy as can be until ticks bit them.

Lyme disease can complicate pregnancy (and if you’re reading this and you’re pregnant, then don’t worry too much. Make sure you have a great physician and specialist and keep doing what they say). We could get into a lengthy debate about when life begins and whether or not a miscarried fetus is in actuality a life, but … let’s pretend the grieving mother-to-be and mourning father-to-be and saddened grandparents-to-be are listening. To them, it’s a loss. It’s a loss of a life. It’s a loss of potential. It’s a death.

Meningitis is a symptom of lyme disease – and I’ve had it! In fact, my specialist thinks it may be what helped reduce my ADD symptoms over the past few years. Meningitis does kill people.

There are many ways to die from lyme disease. Many. However, no one looks beyond the “heart attack” or the “neurological issues” or the “respiratory failure.” Especially since many physicians won’t concede that lyme exists and fewer will concede how dangerous it is.

For a poignant list of people who have died of tick-borne illnesses, look at this site:

It contains a lot of medical jargon, but it makes a great point. I think what I like about it IS the medical jargon. Initially I thought its cool and clinical tone undermined the “memorial” aspect. In addition, I thought the absence of names and photos seemed to steal from the “human face” one-two punch that might have been thrown in the face of all the doubters. But the cool and clinical tone …. it makes you want to take it seriously. Its verbiage communicates medical knowledge of the disease, some level of expertise. The nameless people listed in this catalog of mortality are patients and treated as such. This is more of a reason to take this website seriously.

Toward the bottom, there are lots of fatality citations in animals – including dogs, cats and livestock. No one is invincible.

You may also notice in this site how widespread tick-borne illnesses are (and let’s think beyond lyme disease because there are many different infections and co-infections). There are deaths cited everywhere from Brazil to Thailand to the Sahara. A Japanese tourist brought home an American souvenir: lyme disease. Perhaps it was too exotic of an illness for the medical community in Japan? Perhaps it found her weakness and went for the jugular. The website says it took four years for her demise.

That’s the other problem with lyme disease as a cause of death. It impacts everyone SO differently and it seems to find the fast track to destroying people. If you’re vulnerable in the heart, it will go for you there. If your nervous system is just a smidgeon compromised, it will take up roots there. When someone dies from these complications, the doctor probably shrugs and said “there was a family history of heart disease” or “he had a neurologist for years prior to having lyme disease …. he was going to die from this anyway.”

Speaking from experience, I can say that if you don’t literally die from it, you die from it. You don’t die physically, but in no longer living, you die. Laying on a couch half asleep for hours on end isn’t living. Keeping your feet elevated for a couple of hours because you finally HAD to go to the grocery store isn’t living. Being unable to pick up the house properly and living in clutter is not living. Being unable to make plans to do anything at all – even having a coffee with a friend – is not living.

If you’re not living, you’re not necessarily a casualty. But you feel like one.


Can Lyme Disease Kill You?

I remember a stunningly sunny July day in 2008. I limped and gimped from the parking garage to where I worked at the time. I saw two men I knew and they asked why I was walking funny. Newly diagnosed with lyme disease, I told them. At the time, I felt like “I GOT this.”

I was on antibiotics and had an appointment with a specialist. It was “just a bacterial infection,” went my attitude. Let’s not take this lightly: I knew it was a BAD bacterial infection. But some antibiotics? Some rest? I GOT this.

I remember one of the guys saying, “can you die from that?” With mouth agape, I stood there foolishly and stared at him. The older gentleman, Larry, with folded arms closed his eyes and nodded slowly.

Google agreed.

Some people die from alcoholism, but causes of death are listed as suicide, heart disease, cirrhosis …. and lyme disease is not at all dissimilar.

The number one cause of death for lyme patients IS suicide.

So … did I ever feel suicidal? No. But I definitely “get” how someone could. You do this slow-dance for years and it gets better and then worse and then marginally better and it plateaus. Some are never diagnosed and it NEVER gets better. Their quality of life diminishes. They can’t live. They just can’t. So what are the options? I get it. Unfortunately, I GET it.

I remember fearing that something would happen to me – an accident or an illness – and my survival would be contingent on how hard I was willing or able to work, how good my mental fitness was, how positive my attitude was. I knew that if something like that happened, I’d die. I didn’t have “it” anymore.

They say a human being can survive for 72 hours without water, 2 weeks without food, and a few moments without hope.

I try to find my hope anywhere and everywhere I can. I think of young people with cancer who are spending their last days in a nursing home. I think of people in the throes of addiction with no way out. I think of people on oxygen who can’t breathe. I thank God I’m not in their shoes. My shoes aren’t too comfortable, but they’ll do.

I hang on to the hope that a better day will come. I have had enough better days to know I haven’t seen the last of them. When things are very bad, I try to cling to anything that feels good whether it’s a hot bath, that warm fuzzy feeling a person gets when they’re drifting off to sleep, a hug, my son’s laugh, or a sip of cool fizzy soda. There’s always something, some indication of something better – even if it’s only a slight improvement over the moment before.

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