The Mighty Logo

When Your Life Is on Hold With Lyme Disease

The most helpful emails in health
Browse our free newsletters

May was Lyme Disease Awareness Month, and I’ve been thinking hard about what I’d like to say, or do, to acknowledge its existence this year. The fact that I’m even aware of Lyme Disease Awareness Month is something of a milestone. Last year, I was unaware that May was Lyme Disease Awareness Month, or that there was even such a thing, and I certainly didn’t know how much said disease would come to mean to me. Last year I was sick, but I didn’t know with what.

Since January of 2019, I have been through extensive testing and seen a multitude of specialists in an attempt to figure out what is wrong with me. I finally ended up with the diagnosis of Lyme disease. I have since spent the last nine months on a steady stream of heavy-duty antibiotics as treatment for late-stage Lyme disease, which my doctor believes I have had for at least three years.

And I am sick, like super sick, because the treatment reaction, called a Herxheimer reaction (“herxing”) by Lyme patients, is real and ugly and unrelenting and no fun at all.

The drugs take a tremendous toll on my system, and to combat that toll and try to manage the multitude of symptoms I have, I also take a mixture of prescription medications, vitamins, probiotics and supplements totaling about 30 pills a day to keep my body functioning through this process.

Lyme disease is an infection caused by the bacteria Borrelia burgdorferi, which is typically transmitted to humans from a black-legged or deer tick. Ticks live in the grass in forests and at the edge of forests. They pick up the bacteria from rodents and other animals as they feed on them and afterward pass it along to the humans they feed on.

Lyme disease is not a fatal disease, though if left untreated, it can have long-term effects on the joints, heart and nervous system of an infected person. It is a disease with three stages corresponding with the degree of infection. Stage 1 occurs just after infection when a person typically feels like they have the flu and the infection has not spread through the body. This is the easiest to cure. Stage 2 happens a few weeks to several months after infection, and new symptoms start to appear, such as localized pain, fatigue and headaches. Stage 3, also known as late-stage, chronic or neurological Lyme disease, occurs when the infection has been left untreated for several months or years. Patients can develop several physical and neurological symptoms.

I am 22 years old, and my Lyme disease has caused me to put my university dreams on hold and stop working at a job I love because I was too sick to function and do either of them with any degree of efficiency or satisfaction. I can’t read a textbook, and my short-term memory is limited to three seconds unless I write things down. I sleep more hours than I am awake, yet I’m forever tired. My depleted immune system has largely confined me to my house, except for the multitude of medical appointments I have to attend. My joints ache deep down where there is no way to find relief, and some days my brain is so foggy I can’t think clearly enough to find the words I need to complete sentences or even just form internal thoughts. I’m nauseous and dizzy, and some days I’m hot and some days I’m cold — like my body can’t make up its mind. My head pounds, and my ears never stop ringing. I have no physical strength or endurance, and “working out” is walking up the stairs to the kitchen for a glass of water. My muscles spasm and my nerves burn, and everything aches all of the time and this has become my new normal. This is what I have lived with for more than three years.

And yet, I can’t tell you exactly when I was bitten by a tick, and I never saw the “classic” bullseye rash which is the supposed gold-standard symptom doctors look for. I don’t remember exactly when my symptoms started, just that gradually I started to feel sicker and sicker until I arrived where I am today. I live in an area where ticks are in the grass and in the shrubs, and we vacation in areas where ticks are found. They are in my backyard, down the street and in the forest behind my house. I’ve found them on my dog, on members of my family, crawling on my carpet and on my bed covers, but I’ve never actually found one on me.

Because I can’t prove I was bitten by a tick, there are members of my medical “army” who refuse to accept my diagnosis. Every appointment includes time spent arguing if the current treatment regime is warranted or not, if it is doing more harm than good, and if Lyme disease even exists in Canada. Some doctors hold the position that there is no Lyme disease in Canada, that I don’t have Lyme, and there is no reason for the treatment. They tell me there is no way for me to have Lyme disease because I never found a tick bite and I never saw the popular rash. They tell me because the unreliable Canadian blood test is negative, there is no way I have the disease, even though all of the symptoms line up. According to them, it’s much more likely that I have either six separate conditions, from fibromyalgia to chronic fatigue syndrome, that magically appeared and started at the same time or it is all in my head.

And these doctors aren’t alone. A good part of the Canadian medical establishment wants to tell me that Lyme disease and the ticks that carry Borrelia burgdorferi do not exist where I live. One only has to look at the Ontario Lyme Disease Map put out by Public Health Ontario to see the big yellow dot on the city of London (where I live) — indicating a high chance of coming into contact with infective black-legged ticks.

It is not all in my head; I’ve had two different shrinks tell me that. This leaves me with two remaining options, of which only one makes sense — that Lyme disease exists, and I have it.

So, what to do about it?

I would like to use my experience to warn others about the risks — to educate them about Lyme disease and how to protect themselves from it. The information is available, but people don’t know they should be looking for it, so most people don’t. I wouldn’t wish this disease on my worst enemy. To prevent it from spreading, we need to talk about it in the hopes that more people will be aware of the danger and be smarter and safer. If people are aware the areas they frequent also have ticks known to carry Lyme disease, and this information was put in places they could easily access, would they be more likely to take precautions that protect themselves?

These precautions are very simple — wearing light-colored clothing that covers wrists and ankles, using insect repellant, avoiding areas of long grass and the edges of forests, and checking themselves and pets after walking in grassy and forested areas. If they were aware of how bad it can be if they don’t, of what life looks like if Lyme disease goes untreated, would that make them take notice? Health regions need to put signs in areas known to have high tick populations, and they need to undertake public awareness campaigns so the public becomes aware of the risks.

My one voice isn’t likely to bring about big changes, but if enough people raise the issue, maybe we can start making changes to our health care system and to the curriculum in medical schools. Lyme disease is the most common vector-borne infectious disease in the United States and yet, most doctors (and people) don’t know anything about it. And Canadian doctors are working off old information — the idea that Lyme disease doesn’t exist in Canada.

However, because ticks are spreading further and further North each year on migratory birds and overwintering in our changing climate, that is no longer true. If doctors and medical professionals were educated about the regional prevalence of ticks and Lyme disease, they may be more likely to diagnose it or look for it when a patient presents with a strange grouping of symptoms. It is a silent disease that is making its way across our continent and our globe and taking us out before we even realize what has happened.  Most people with Lyme disease don’t notice the tick and only 30-80 percent of people develop the stereotypical bullseye rash, and in Canada, the blood test for Lyme disease is very unreliable. Often people who have Lyme disease come back with a negative result. Doctors have to be willing to look beyond these three things to diagnose someone with Lyme disease clinically — by looking at the unique grouping of symptoms. If you don’t fit within the strict parameters that have been set out by the Canadian Medical Association or Health Canada, most doctors are unwilling to help.

Lyme disease is often known as “the great imitator” because it mimics a multitude of other illnesses and diseases and hides in the body — getting worse at times of high stress and low immunity. Patients often go through months or years of testing for various other illnesses before reaching a diagnosis of Lyme disease and often will collect a long list of other diagnoses in the process. Personally, I went through months of tests and scans trying to figure out what was wrong before exploring the diagnosis of Lyme disease with my doctor. At one point, I was told I potentially had a brain tumor, but when doctors couldn’t find one, they passed me off to a new set of specialists to see if they could figure out what was going on with me. This is a common experience amongst Lyme patients.

Lyme disease is not something that can always be cured by a quick two-week round of antibiotics. Sometimes, it requires much longer treatments than the standard two to four weeks government-approved course of treatment. It is a disease that is greatly varied and each individual case is unique to the person — based on a person’s symptoms, their own health outside of the Lyme disease and how long they had Lyme disease before starting treatment. Lyme disease does not fit into a nice square box. It should not be treated like it does.

I was not cured with a two-to-four-week round of antibiotics. I wasn’t even cured with eight, or 16. And now it’s been eight months; I’m still not cured, and I don’t know how long it will be until I am or until my Lyme disease goes into remission. I don’t know how long it will be until I can return to my life as it was — back to school to finish my degree, back to the job I love and back to doing things I enjoy. I’m sick of being sick, but right now, for the foreseeable future, all I will be is sick, because of a little bug that probably looked like a freckle who thought I’d make a good snack.

If you want more information, check out these sources.

Originally published: June 17, 2021
Want more of The Mighty?
You can find even more stories on our Home page. There, you’ll also find thoughts and questions by our community.
Take Me Home