Invisible illness: My battle with Lyme disease

What you need to know to prevent it from happening to you

When I was diagnosed with Lyme disease in early March, I immediately knew I wanted to be as vocal about the disease as possible. Many would prefer to battle a disease privately, but I wanted to go public to raise awareness of Lyme and its consequences. As I learned more about Lyme disease, I knew I had made the right decision. This is a disease that gets little-to-no recognition from the Center for Disease Control (CDC). I am making it my goal to educate as many people as possible. Allow me to share my journey – and some facts I learned along the way – with you:

I began to notice changes in my body and brain in late November of 2015. I ran in the annual Turkey Trot with my family on Thanksgiving morning and finished the five-kilometer run feeling exhausted. I took a three-hour nap later that day, something that was very unlike me. I have never been a “napper” and have always been able to survive (and thrive) on seven to eight hours of sleep. I dismissed this as a fluke and went back to school that weekend.

When I returned to school, I started to notice problems with my brain function. My professors would say something, and I would go to write it down but would only get three words in before my brain went completely blank. I would later learn this is called “brain fog.” I would have to ask the person sitting next to me to repeat what the professor had said. I noticed persistent problems with concentration and lost the ability to study during finals week. I remember barely being able to read a flashcard. Consequently, I failed four final exams. I beat myself up over this, confused as to why I had done so poorly.

By January, my memory loss had become substantially worse. The memory issues were (and continue to be) especially evident when I am using my phone or my computer. I will open a new tab on my computer and completely forget why I opened it, or I will open a new text message on my phone and forget who I am texting. This has probably occurred 50 times over the past three months, and it has already happened twice in the process of writing this article. In late January, I forgot the name of a girl that I have known since freshmen year, a girl that I am good friends with. I recall sitting in Phelps, being only able to utter a “Hey…” making it totally obvious that I had blanked on her name. I had to ask the person sitting next to me to remind me of her name. Moments like these are vivid in my mind because they were signals to me at the time that something was seriously wrong.

In mid-February, I remember going out for a run around Centennial Park. I started running and could not even run to Centennial Park. Anyone who knows the (two block) distance between Durfee Hall and the park knows how pathetic that sounds. I managed to run around the park once and walked to Lemonjello’s to get a much-needed coffee. I remember calling my mother in Lemonjello’s, completely exhausted, barely able to keep my eyes open, and telling her, “Mom, something is not right with me. I ran two blocks and I feel like I am going to fall asleep standing up.” That phone call marked the start of my search for answers.

I remember watching my friends juggle a full class load, a job and several social activities while fitting in time to work on a group project and get to the gym. How I envied them! I would think to myself, “there is no way I could do that.” I felt so frustrated; why couldn’t I keep up with them? I was 20 years old, living some of the best years of my life and I barely had the energy to get out of bed in the morning. And I was exhausted by 2 p.m. in the afternoon.

For the next few weeks, I visited four doctors throughout Michigan in hopes of determining the cause of my illness. The first three doctors were baffled and ordered a plethora of tests, hoping for a medical explanation. All tests came back normal, and my first two Lyme tests came back negative. I later learned that this initial Lyme test (the only Lyme test covered by insurance) is only 60 percent accurate. My doctors, not knowing the inaccuracy of the test, ruled out Lyme and moved on to other options. I was told by three doctors that these symptoms were indicative of depression and anxiety. I was questioned repeatedly about depression and anxiety, to the point of feeling insulted. This was not psychological, and I was not making these symptoms up, I was truly feeling this way. Determined to find a legitimate diagnosis, I visited the office of Dr. Teresa BirkmeierFredal who runs the Restorative Medicine Center in Rochester Hills, Michigan. Dr. Birkmeier specializes in treating chronic pain and chronic disease with an approach that incorporates both western medicine and holistic therapies. I was finally diagnosed with Lyme disease, which was a real relief for me. This may seem surprising (who would be relieved to have a disease?), but it proved to me that I was truly experiencing these symptoms that were very real and they had a name and diagnosis. I was immediately put on a treatment plan, which I have responded well to.

The week of my diagnosis, I lost the ability to drive, read and watch TV. I did not have the mental stamina or adequate concentration to feel comfortable behind the wheel of a car. I could not focus enough to read a page of a book and frequently got the feeling of “sensory overload” when watching TV. I just could not keep up.

My darkest days were spent at home after starting treatment. I was confined to my bedroom in my home in Northville, Michigan, where I spent much of my time in bed (up to 18 hours per day) and spent many nights wide awake because of severe insomnia. I slowly began to feel better, and my health improved rapidly in those first two weeks. I rallied and was able to return to school for two days before spring break, and I was able to travel to Washington, D.C. with Markets & Morality, an economics student group that I am a part of.

Since starting treatment, many of my symptoms have disappeared while many are still apparent everyday. I still have days when I cannot think, when I cannot get out of bed and when I cannot do everything I hope to do, but the good news is that those days are getting fewer and farther between. I have gone from needing 15 hours of sleep to needing 10. I have regained the ability to drive short distances, but still lack the mental stamina to drive for more than about 20 minutes.

In addition to my antibiotic and probiotic treatment, I am on an anti-inflammatory diet because Lyme spirochetes (bacteria) thrive on inflammation. I visit the chiropractor once a week, and I take time out of each day to rest and clear my mind. I am also considering Cryotherapy and oxygen therapy treatments to boost my energy, reduce inflammation and strengthen my immune system.

Throughout the last four months, I have experienced a wide range of symptoms that span the entire length and depth of my body. The most damaging effects have been on my brain and central nervous system. Aside from frequent Post Diagnosis head pressure and headaches, I have struggled with short-term memory loss, concentration, word retrieval and information processing. It frequently takes me a minute to process and understand a joke or a professor’s comment in class because I have to focus solely on that individual to process information immediately. Word retrieval has also been challenging; at times over the last four months, I have lost the ability to form proper sentences, unable to pull words from my brain and put them in order. These changes in my brain function have been the most difficult to deal with emotionally. No one wants to feel mentally slow.

The Lyme disease bacteria has also attacked my central nervous system. My limbs, hands and feet frequently twitch, vibrate and fall asleep with no warning. I suffer muscle spasms in my arms and thighs and burning sensations in my hands.

Lyme disease is frequently referred to as the “invisible illness” because the majority of the symptoms are internal, undetectable from the outside. I have not lost my hair, and I am not confined to a wheelchair. To any person who sees me, I don’t look sick. Other than my fatigue, mood irritability and chronic cough, my symptoms are invisible. Yet, inside I feel so ill. I am growing very tired of being told, “Well, you look great!” I find it insulting because I often struggle to push myself out of bed in the morning.

My health has improved drastically since my diagnosis, but I am still far from “normal.” My last “normal” day was in mid-November. I don’t really remember what it is like to not feel some type of ache or pain, some type of confusion or weakness. I am on track to be 90 percent healed in 3-4 months, according to my doctors. There are still days when I don’t feel like my body belongs to me. It is a bizarre feeling to not be in control of your body. Lyme disease has hijacked my independence and my freedom. I am reliant on the sporadic pattern of my health to determine what I am able to get done each day.

I am focused now on getting back to the person I used to be; the easy-going, ambitious, hardworking, social college student who thrived on being busy. The more you threw at me, the better I functioned. I loved working, I loved to be busy and I felt most alive when I was doing it all. However, my priorities are different now. I am laser-focused on making a full recovery, but my journey does not stop there. Lyme disease is a disease that has been sidelined by western medicine. Doctors doubt its existence, institutions deny funding and meanwhile millions of Americans are suffering in silence. Steps must be taken to ensure the full recovery of the millions suffering from this chronic illness, and I intend to do whatever I can to make that happen.

The Tick Bite

I have no memory of being bitten by a tick. This is another common misconception with Lyme disease: You’ll remember a tick bite. In fact, 50 percent of people infected do not remember being bitten. I was bitten in the spring months when ticks are breeding. Nymph ticks (baby ticks) are difficult to see and feel and feed in the spring and summer months. Nymph ticks can be as small as the head of a piece of pencil lead.

The ‘Bulls-Eye Rash’

I believe I was bitten by a tick in Holland State Park in April of 2015 when I was camping with a few friends. We were in a wooded area, and we slept in hammocks. I have a vivid memory of me lying in my hammock looking up at the trees thinking, “I hope nothing falls on me!” Oh, the irony. A week later, I developed a small, quarter-sized rash behind my right knee. It had a solid center and a ring around the outside. The bulls-eye. It did not itch or hurt, so I dismissed it. It disappeared after about a month. When I fell ill and began to investigate Lyme disease, I remembered the rash, and it matched the infamous “bulls-eye” pattern.

The “bulls-eye” rash is not a guarantee, however. The CDC estimates vary widely depending on geography. In Maine, 43 percent of Lyme cases have the Erythema Migrans rash (and only 9 percent have the bulls-eye pattern) while in other states that statistic can be as high as 87 percent.

The Future

Thanks in part to the public advocacy of Yolanda Hadid and Avril Lavigne, Lyme disease is receiving much-needed public support and recognition. However, there is a long road ahead. The National Institute of Health (NIH) and the Center for Disease Control (CDC) have remained stagnant on funding research, pursuing accurate testing and educating doctors on a disease that is growing rapidly.

In fact, in February of this year, Lyme disease met the National Institute of Health’s eight characteristics of an international pandemic. It is the fastest growing infectious disease in the United States with the CDC estimating 300,000 new cases each year. That is more than HIV and Breast Cancer combined. Yet, there remains no definitive diagnostic testing, vaccine or cure.

If you wish to learn more about Lyme disease, please visit www.lymedisease.org