If you want a detailed timeline leading up to diagnosis, you can read this post. Otherwise, jump to My Story Here >
Early Memories of Possible Tick Bite
1980 – This is the only time I recall having a bulls-eye rash. At the time, my parents said it was a spider bite. But I remember it well because it was a large red raised area, with another thinner circle outside and looks just like the photos of the EM rash that you can find online.
1980’s – I did notice significant difficulty in my energy levels as compared to before. I went through a period of tremendous pain in my legs, which was considered “growing pains”. I also developed a weird, burning in my shoulder blade area, which was so painful that my mom took me to the doctor.
The First Signs of Spread to Organs
1988 – I developed a heart condition after having my wisdom teeth removed. I was diagnosed with tachycardia, which was treated with tenormin/atenolol. The cardiologist discovered Mitral Valve Prolapse as well. I was never the same after having my wisdom teeth pulled. Exercise was difficult for me. I experienced many instances of what felt like exercise-induced asthma. I couldn't do any activities without my heart medication. During the years following I had numerous echocardiograms, EKG’s & holter or event monitors. One cardiologist discovered that my heart rate only increased when I was active and my blood pressure would drop at the same time.
Hindsight is 20/20: The slow decline
June 2011 - I experienced an intense and immediate feeling like I could not breathe. My husband called 911. I was rushed to ER with what they thought was allergic reaction or heart attack. The only thing they found was that I had low potassium, but everything else was normal.
Early 2012 – I began having weird heart issues. I noticed them when I would sing (We lead music at my church). One Sunday morning while sining, my heart rate shot up to about 150 bpm and I felt like my throat was closing and I couldn’t breathe. I had to leave the stage.
This kept happening, but I stopped drinking coffee to help. I then began to notice that I was having trouble swallowing and when I would bend over or turn my head to side, it was difficult to breathe.
May 2012 – One day I woke up and I felt like I had a flu with no fever. I had extreme fatigue and could barely function. I had an intensely achy back in the kidney area. I could not do anything for weeks, but lay on couch. I had kidney issues with constantly having to pee, which would swing completely over to not being able to pee.
Slowly, I improved over a period of about four weeks, but never gained 100% of where I was functioning before May. I would say I was about 70% with coffee.
Summer 2012 – I noticed that my mood was changing. Looking back, I realized that I was becoming more withdrawn and irritated by things that normally would not irritate me.
August 2012 – I had another episode of heart pain and shortness of breath. I went to the ER thinking I was having a heart attack. My heart tests were normal, but they kept me for 3 days for more tests and observation. Again, they found low potassium. They sent me home with anxiety medication, which I never took.
The Flu of 2013: It only takes a spark to get a fire going
February 20, 2013 – woke up feeling like I was sick. Low-grade fever of 99.5 for two days. Very Low energy.
February 22, 2013 – Fever spiked to 102. Sinuses extremely congested with intense eye pain, facial pain, and ear pain.
February 23, 2013 – Went to walk-in-clinic and was prescribed amoxicillin, 500mg 3 x’s a day for 10 days.
February 25, 2013 – I woke up in the middle of the night in an extreme panic. I had completely lost my sense of smell and sinuses were completely dried out. They still felt painful like they were blocked, but nothing was coming out. I felt out of it, had extreme diarrhea and totally lost appetite. I Had difficulty swallowing and felt like I was having breathing difficulties. I was pulling on my neck constantly to try and get more air into my lungs.
February 29th, 2013 – Visited my then (she was fired) Primary Care Physician because amoxicillin seemed to be making me worse, not better. She prescribed Zithromax for 5 days. She gave me an inhaler for shortness of breath (which didn’t help). The longer I was on the Z-pack, the worse I felt. My head felt like it was in a vice.
Late Feb and Early March: Began experiencing extreme joint pain all over, and weird sensations up my back in the shoulder area. I had been gluten-free since 2006 with no joint pain during this time, but the joint pain returned regardless of gluten-free diet. I had very large, swollen Lymph nodes in my neck. I began feeling extremely withdrawn and not myself at all. I had extremely high anxiety and a dark fear. I also developed an extreme head pressure. It was so intense and made me feel "out of it" all of the time.
March 11, 2013 - Visited Primary Care Physician, I was highly anxious because I felt so ill. I told her I felt like I had Mono. I also had extreme head pressure and a general “out of it” feeling. She didn’t do anything, but tell me that practically everyone has had mono at some point and refused to test me. I began taking Sudafed. I was experiencing rapid weight loss. I had lost 20 pounds in less than a month.
March 23, 2013 – I bent over to pick up a toy and had an instant and sharp head pain, headache. I stood up and everything went white. Almost like there was a thick cloud all around me. I couldn’t see much, but it cleared in a few minutes. I stopped taking the Sudafed.
March 29, 2013 –I fell asleep at 11:30PM and woke up at 3am. I had been very lethargic for a week prior as I kept falling asleep everywhere; in church, visiting my parents, at home during the day, in the car. I could not stay awake. That night, I had a nightmare and it made me unable to go back to sleep right away. The house was hot. I opened a window. It was snowing outside. A quiet and beautiful snow. I sat there in front of the window feeling helpless. I walked around and turned down the heat. I laid back down at 4AM. [I have NEVER in my life had problems sleeping, falling asleep or staying asleep before this moment]
When All Hell Broke Loose
Every time I would begin to drift of to sleep, I would have what I thought was a strong seizure-type jerk. It was a jerking of the head. It kept happening all night just as I would begin to transition into sleep. I did not sleep at all.
The next night, I took two benadryl thinking that would make me sleep. I was very tired, I went to bed and it began happening again. I was up all night and at 4 am, I woke my husband telling him something was very wrong.
March 31, 2013 (Easter Sunday) – I went to the ER in our small town. The arrogant (this is a nice way to label this man) doctor ran basic blood tests, but he also ran drug tests due to the way I described how I felt. I told him that I felt like I wasn't in my body. I was exhausted and so so sick. ALL blood work was normal. He did not order any head scans or other tests, even though I told him that I had such extreme head pressure and I felt like something was "very wrong". I was also extremely thirsty. I felt like I couldn't drink enough water. I was drinking about twelve glasses of water per day and I could not quench this thirst. They gave me an IV at the hospital, but the tests for dehydration came back normal and they pulled the IV.
At the ER, my body was jerking and every time I would be drifting off to sleep, I felt as if I were dying. This doctor prescribed 5 days of Ambien to help me sleep and told me to see my PCP. He said, "I see this every day. You are stressed and need to reset your sleep. I KNOW what I am talking about." He criticized me for questioning his knowledge and authority. He made me feel so helpless. I was afraid because I KNEW that something was terribly wrong.
April 1, 2013 – I went to my (now fired) PCP and told her that Ambien was not working and something was really wrong with me. I could only sleep two hours on the Ambien before waking up. I was exhausted, but wide-awake. She said that Ambien doesn’t always work and prescribed Ambien CR and Ativan for anxiety. I complained about mono again and gastrointestinal issues. So she did the logical thing, she ordered heart tests and told me to see a psychiatrist. Not only was she not helpful, she became increasingly aggressive, angry and hurtful. I was so afraid to visit her office alone because she would attack me.
As a side note: We had a good relationship for 10 years. I had been her patient while I was a professor at the college where her children attended. I had rarely been sick and she knew this, but as I found out later, my experience prior to diagnosis was quite common.