8 years ago this week, I thought I was finally about to be where I wanted to be in life. I was a busy working Mom with 3 children who had been struggling to go back to college and get my Teaching Degree for several years. I was student teaching and was a few short weeks away from from finally realizing my dream and graduating. I didn’t see the deep cliff I was about to fall over instead.
Student Teaching was proving exhausting, but had been going well all fall. I could finally see the light at the end of a very long tunnel. Then suddenly, in the beginning of December I became incredibly ill. First, while teaching, my muscles and bones all began to hurt, and my limbs felt heavy. I felt feverish and nauseous. I was a serious and dedicated student, and I was concerned because you are not allowed to miss student teaching, for any reason. I made it through the day, and went home. I’m sure I went to bed early that night, but I don’t remember. I woke up the next day with all the same symptoms, but, you aren’t allowed to miss student teaching. So I dragged myself to work. I was only at school a short time, before the other teachers, concerned by how sick i was, sent me home. I went home, emailed my Supervisor at school to explain my illness and collapsed in my bed. I developed shaking chills and soaking sweats, and a fever. a splintering headache unlike an I ever felt, and I’d had migraines for years. I could barely drag myself from my bed to the bathroom right next door. Nausea never left even when my stomach was empty. Every muscle I had hurt, and so did my bones.
This was all terrifying as I had never been so sick in all of my life. I also don’t like being helpless, and was concerned about the teaching I was missing and how that would affect my graduation. I was also home alone with my 3 kids, as my husband was out of town for work. Luckily, my kids were 14, 11, and 8. They could fix themselves food. Get themselves out for the bus to school etc. I remember my 8 year old trying to take care of me, bringing me water, heating up “corn bags” in the microwave to keep me warm. She was incredibly sweet and helpful as I couldn’t even crawl to the bathroom from my room.
When these symptoms did not subside in a few days, my mom wanted to take me to the doctor. However, my Doctor had recently left his practice to become a hospitalist and I hadn’t found a new one yet. So, we went to urgent care. There, they did not know what was wrong with me. I knew I had several tick bites, but they weren’t concerned about them. They said it might be a virus, took some blood, and told me to go back home to bed. Perhaps it would clear up, or they would find something in the bloodwork. They called the next day and wanted to know how quickly I could get to an Emergency Room. Quite honestly, this phone call was terrifying. They said my white blood cell count was dangerously high, and were concerned the hour I said I needed to get to the ER was too long. My Mother drove really really fast that day. But miraculously, we got to the ER without any crashes. But, at the ER, they didn’t seem too concerned by the white count, and seemed to think that the Urgent Care had over reacted. They did more blood work. They heard me describe all the symptoms I’ve listed above. I knew I had had several tick bites. I was concerned it was the tick bites making me ill. They said that was definetly not it. My husband got back to town and met us at the ER. ER doctors, seemed to ignore most of my symptoms. They latched onto my high white cells, and my mention of lower back pain (which I included with all the other pains I described) and my nausea. I actually even remember the physician scoffing at me as if I was some sort of idiot, saying I simply had a kidney infection. I was prescribed antibiotics and strong anti nausea meds and sent on my way. Again, this was based on a high white count only, and lower back pain, which was just one of many pains I was suffering. no dipstick urine testing was positive for anything.
I went home and took my antibiotics and anti nauseas and rested. I don’t remember many details, but at some point, I was able to drag myself back to school, and back to Student Teaching. My Supervisor at school and my classroom teacher were able to find a way for me to make up the time I had missed while so sick so I could still finish student teaching and graduate. I got slightly better. But the symptoms stayed. The pain the nausea, the all over muscle and bone pain, the shattering headache, the fever. The symptoms eased a bit, but they didn’t go away.
Social media, which can help me with my memories since the bugs started eating them, shows me that on December 10, 2011, 8 years ago today, I posted about how sick I was. “finally a little better today after being horribly sick and in bed for a week. That was insane! I wonder if we’ll ever catch up on all the Christmas stuff I missed.” friends asked about what was wrong and I replied with “I’ve never been so sick before, I thought I was gonna die. It feels really good to be even a little bit better” and ” It turned out to be a kidney infection of all things but I had no symptoms of that. I had a raging fever, couldn’t eat or keep down water, achy muscles and joints, etc.”
The next day I posted that “Ugh…I had to break down and start taking Zofran again for the nausea. I REALLY dislike this medicine. I guess I better go and keep my hallucinations to myself ”
What I knew then was that I wasn’t getting better, and I was very ill. I also knew I had been getting many tick bites since moving to my new home a bit over a year before. But Doctor’s didn’t care.
Now, I know what happened. And I can’t believe I went misdiagnosed. Hindsight allows me to see the symptoms and the tick borne illnesses I now know I have. The Hudson Valley of New York is one of the epicenters of tick born illness. I reported multiple tick bites during the last year and a half before my illness, including several in the last few weeks. (as in dozens and dozens of them in the year and half I had lived here). I had so many symptoms of tick born illness, but did not get a diagnosis of any, or treatment for any while they waited for testing.
Let’s look at some of these symptoms and diseases.
According to the CDC symptoms of early (acute) Lyme can include: EM (Erythema migrans) rash, and flu like symptoms including malaise, headache, fever myalgia, arthralgia. I had every single one except the rash (only about 20-40% of people contract an EM rash. I would later). Every other symptom I had.
Symptoms of Anaplasmosis include: fever, chills, rigors, severe headache, malaise, myalgia, gastrointestinal symptoms (nausea, vomiting, diarrhea, anorexia) and for less than 10% a rash. I had all of these except the rash. (I had to look up rigors lol, yes, I had those too.)
Symptoms of babesia can include: fever, chills, sweats, malasie, fatigue, myalgia, arthralgia, headache, gastrointestinal symptoms like anorexia and nausea (less commonly abdominal pain and vomiting), and dark urine. I had every single one of those.
Symptoms of Rocky Mountain Spotted Fever include: high fever, severe headache, malaise, myalgia, edema around eyes and on backs of hands, gastrointestinal symptoms (nausea, vomiting, anorexia). I had all of them except for the edema, and I may have even had that too, I do not recall.
How were all of these diagnoses missed? How did I get diagnosed with a kidney infection and told I couldn’t have a tick born illness?
At the time, I didn’t realize that patients should always ask for copies of all bloodwork and keep those records organized and accessible if suffering from chronic or mysterious illness. I do not have any idea how high my white cell count was when the Urgent Care told me to rush to the hospital. I’ve asked them to mail a copy of the tests, but their records may not go back that far. I also don’t have copies of the blood counts or tests the hospital did that day. But they did send out a lyme western blot, an ana, a rheumatoid factor, and an ehrlichia test to labcorp. I do have these results, showing a high Rheumatoid factor, and only IGG band 41 on my western blot, but this is common as it takes a body time to develop antibodies once infected, and this is an antibody test. Funny, the only coinfection that is commonly found in my area that I don’t have, is ehrlichia. And that is the only one they tested for.
I took my medicine, my symptoms reduced just enough that I could keep trying to live my life. My fever persisted but wasn’t as high, the vomittng was controlled by the zofran though the anorexia and nausea remained constant. The pain weakness and extreme fatigue remained constant. I miraculously finished student teaching, and I graduated with my Bachelor’s Degree in Early Childhood Education at the end of December, 2011 Magna Cum Laude from Suny New Paltz. (I frustratingly missed Summa Cum Laude by 1 100th of a point)I thought I had finally realized my dreams. But it turned out I was too sick to actually realize them at all.
There’s lots more to come, but this is how it all began 8 years ago this week. Had I been properly diagnosed as I should have been, I could have been treated properly, and been well in a few weeks. Instead, I was left to get sicker and sicker while all of the tick born illnesses ravaged deeper and deeper into my tissues.