I didn’t notice the life-changing bite until the final day of the vacation. My friends and I had gone to a local water park and it wasn’t until I felt the sting from the chlorine that I looked down at my thigh and noticed a small scab. I figured it was a spider bite and continued having fun. After a few hours, we left the water park and started to head home.
I remember feeling nauseas, sore, and extremely tired. I brushed it off as effects from the active week we all had.
The details leading up to urgent care are a bit foggy for me. I had a temperature of 103, and I couldn’t walk on my own. I was feeling immense pain throughout my body. I was confused, couldn’t form sentences and was extremely lethargic. I remember my younger brother, Ryan, calling my parents and they advised him to take me to Urgent Care.
The doctor asked if he could look at the bite, and when I showed him, I noticed there was a “bulls-eye” ring around the bite, which I hadn’t noticed before. It was so large it covered about half of my thigh. He asked if he could photograph it and I said that was fine. He then called the nurse into the room and she told me they were going to remove the scab, which they did. She showed me the piece of the tick that was attached to the scab, and explained to me how they bury their heads inside the victim when they bite (in order to feed). They told me they were sending the scab and a blood sample to their labs. The doctor gave us a brief description of what Lyme Disease is and wrote me a prescription for Doxycycline, which was an antibiotic that he wanted me to take for 30 days (he made sure to put emphasis on the importance of taking the antibiotic). I didn’t ask many questions, as all I could think about was going home to rest.
Growing up, I was always stubborn about medication. It would take far more than just a headache for me to resort to taking something like a Tylenol for relief. With that said, I’ll be honest, I only took about a week and a half worth of my Doxycycline prescription, not the full 30 days. The antibiotics made me feel like I had the flu. I felt they were making me worse and not better. Ultimately, I underestimated the consequences of skipping the remaining doses.
The problem with symptoms from Lyme disease is that they vary from day to day. I was very active growing up, I played sports and was always “on the go.” I was a straight “A” student in high school with aspirations and dreams. I still have aspirations and goals, they’re just extremely different now.
One of the most annoying symptoms I have is the constant feeling of the “common cold”. This particular feeling is one that I experience every day. My body’s new “normal temperature” has changed from the usual 98.6, to 97.1 on a day-to-day basis and my blood pressure is always low (about 95/65). I battle with symptoms of meningitis daily (I.e. constant headaches, pain and stiffness in my neck, fevers, etc.) and I also have many co-infections (the beginning stages of MS, fibromyalgia, babesiosis, etc.).
I’ve lost most of my memories from large chunks of time before I was infected, and I have terrible short-term memory retention. I battle constant chronic fatigue; no matter how many hours of sleep I get per night, I’m always exhausted.
I’m constantly nauseous, have vertigo, suffer from increased anxiety and have a terribly short attention span. I used to be extremely social and loved hanging out with friends and family. Now, the thought of that alone gives me anxiety. I’ve become reclusive and prefer to be home now rather than in a social setting. While this was a drastic change, at first, I’m okay with it now. Home is where I’m happy. Part of me thinks that is because when I’m at home, I’m in control of my surroundings.
Some days, my neurological symptoms are the ones that are more dominant. When this is the case, I can experience issues with forming sentences or recalling words that I’ve used on a daily basis. I’m also extremely sensitive to light and sound. Loud and spontaneous noises give me anxiety to the point where I need to remove myself from the setting.
I would say that my nerve damage is probably the worst symptom I deal with on a daily basis. It’s severe and I experience it all over my body. That pain (also my first symptom) was giving me this “my body is going to implode” feeling, in the beginning. It’s so severe that if I were to brush up against someone, I would shudder in pain. Or, for instance, if I were to scratch my hand (even a scratch so tiny, a normal person wouldn’t notice) I would experience pain equivalent to what one would experience if they were stabbed or had their hand sliced open. The disease has particularly impacted my mouth, causing my teeth to be pushed from my gums. It’s disgusting, but it’s true.
About 4 years ago, I went to the doctor for a sinus infection and the doctor gave me some antibiotics to treat the infection. I couldn’t fathom the experience I was about to have as a result of this medication. I remember being horrified, watching my skin actually break open and begin to blister after experiencing what we, in the Lyme community, call a Herx-heimer affect.The bacteria/spirochetes in my blood decided to “fight back” against the abx and caused this reaction. I actually filmed it occurring because I knew that if I were to explain to someone what happened, it would sound so outrageous that they may not believe me (though I wouldn’t blame them).
This past fall up until now has been the worst for my arthritis. The arthritic pain I experience, particularly in my hands, has taken over my life. It affects my normal, day to day activities. I can barely use a pen/pencil and opening caps or lids of any sort is a daunting and sometimes impossible task.
As for recent symptoms, my newest is facial palsy. The left lower part of my face is almost completely numb. I notice it the most at night, when my face will begin to tingle and then I’ll lose feeling.
I was in the emergency room this past week because I had such horrible abdominal pain (worse than my 18 hours of medicine-free child labor) that I couldn’t walk, move or talk. I was terrified. After what felt like an endless amount of tests and X-rays, the doctors are still unsure of what caused it. I was given some medication for pain (Motrin, because I refuse to take narcotics unless the circumstances are dire), and I left. I’m terrified of hospitals, only because if I contract a cold or flu virus, I’m down for weeks instead of a few days like a normal person. When I get sick, I’m sick for weeks to months. This fear, coupled with the fact that I am admittedly stubborn, is why I will only go to the hospital if I absolutely have no other choice.
With this disease, I’ve become a great actor. I’m very good at smiling and pretending I’m fine, while inside, my body and spirit are at war with one another. It took 3.5 years for me to finally admit to my friends and family that I have chronic Lyme disease (excluding my immediate family, because they’ve always known). I didn’t want to be perceived as weak or disabled because of the disease; I didn’t want the “poor you” attention. It took me almost 4 years to get myself to acknowledge and accept that this is my new “norm.”
I’ve been told one day, most likely, I’ll be in a wheel chair and will have to live the rest of my life that way. I absolutely refuse to accept that, and I’m going to fight back with every fiber of my being. Not even necessarily for me, but for my daughter.
***my pregnancy & temporary remission***
Before I became pregnant, I was stuck in this dark, ominous place inside of my head. I was depressed and annoyed, and I couldn’t fully come to terms with the fact that the rest of my life would be different. I didn’t want to. I was stuck in this detrimental “poor me” phase that I couldn’t seem to get out of.
When I became pregnant I found that my Lyme “symptoms” began to subside. My doctors explained to me that they’ve learned that persons infected with the disease often go into remission while they are pregnant. For this period of time, I finally remembered again what it was like to feel “normal.”
It wasn’t even 30 minutes after my daughter was born that the Lyme returned, and this time, it was with a vengeance. I didn’t want to be the “disabled mom”. I wanted to provide my daughter in a way that allowed me to fulfill both her wants and her needs. This determination is what gave me the strength to fight back against this disease in any way that I could.
Because I cannot afford the standard medical “treatment,” I spent about a year and a half researching different methods of treatment that fall outside of “standard” medicine. One measure I took was giving up meat and dairy products. To date, my daughter and I are both vegetarians and we will remain this way. Making the necessary lifestyle changes was hard at first, but since having done so, I am a lot healthier. I have a better overall feeling and increased pain relief.
My primary care doctor runs my blood work constantly (almost monthly) to determine any deficiencies I may have. We’ve worked together and made a plan of all the vitamins and supplements I will start taking in order to regain my “normal” life. Although I still have arthritis and nerve damage, I feel far better than I did 3 years ago. My daughter, Mirabella (means divine beauty), is my strength, my joy, my everything.
***the medical community & treatment***
There’s a constant battle in regards to the legality of treating patients for chronic Lyme disease. LLMD’s all over the country are monopolizing within the medical field by simply acknowledging the chronic form of this disease. Some doctors have lost their license to practice, even after having shown concrete proof of successful treatment and remission. Some physicians who started out as family doctors for patients, have to watch those healthy individuals they’ve known their whole life go through a devastating change after being infected with Lyme. They watch the steady regression in that person’s health even after they have completed the course of antibiotics, which is the form of treatment recommended by the CDC. I believe that it is in that moment, when these physicians see the continued deterioration in their patient’s health, that they make the choice to stray from the CDC and to treat their patients in a way that they feel would be successful. In the Lyme community, these doctors are few and far between and we (I speak for all of us) view them as our… Saviors, honestly..
There are only two Lyme literate medical doctors (LLMD) in Michigan. And, because chronic Lyme disease isn’t a “chronic” disease in the eyes of the Center for Disease Control (CDC), it’s extremely expensive to see these physicians and be treated by them because it’s not covered by insurance. My visits to one of these doctors costs me $400. Because of this, I’ve only been able to go one time. Treatment alone costs upwards of tens of thousands of dollars, and that’s if the treatment is completely successful, without any complications. Because of Lyme, I no longer have an immune system to fight and ward off colds or other diseases. I’m terrified of getting a pic-line placed in my body, to undergo one month’s worth of treatment, only for complications to ensue and ultimately cause more problems than I began with.
It took me almost two years and countless doctor visits to find ONE physician (excluding the LLMD’s) that believes the disease exists in chronic form. At the time I had no visible signs of illness on the outside, yet inside I felt as though my body was imploding. One doctor told me he believed I was making everything up, another said I was just reaching out for attention. I was devastated. They made me feel as though I was crazy. So much so, that I almost started to believe it myself.