In November 2009, a friend asked me to tell her my 12 year pre-diagnostic story. Although I had told parts of it to a lot of people, I had never told my entire story to one person. It wasn’t that I didn’t want to share, but it just didn’t seem that important to tell everything to everybody. Even in this story, there are probably bits and pieces that have been left out because I’ve forgotten pieces along the way. Due to the length of my history, I broke it up into parts so you can read bits at a time if you aren’t able to read the entire story in it’s entirety.
I spent 12 years fighting for a diagnosis. I had no idea what was wrong with me. It all started off in 1995 right before I left for college. I had a tick bite. Then shortly after also had some vaccinations and I now speculate that those vaccinations also played apart in my severe illness considering that 10 years later I got worse after receiving another vaccination (Tetanus). I was seemingly fine until I got to college. First morning of classes I sat up in my bed forgetting where I was.
Keep in mind that this feel seemingly normal to me because I had been in the same bed for the previous 18 years. However, I now surmise that the momentarily lapse was the beginning of a multitude of problems. I forgot where I was so I forgot that I was in a bunk bed. I sat up and knocked my head pretty good. There was blood and a pretty good contusion, but doctors said that I was fine. I didn’t even realize either the blood or the contusion was there until I got to class and this guy told me that I had blood running down my face. I don’t know which was scarier … that I had blood on my face or that I didn’t FEEL the blood running down my face to know that it was there prior to being told that there was blood there. I was just grateful that I didn’t have a concussion.
It wasn’t long after that I began to have these episodes. Some episodes were quick and benign while others were more obvious. Due to my childhood epilepsy and conk on the noggin, I went to a neurologist who confirmed that I was indeed having seizure activity. Even after beginning medication, my seizures grew progressively worse. It got to the point where I needed to go to UNC hospitals for a week of testing. I’ve never felt so alone because those doctors were actually suggesting that I was making it all up. That they were strictly for attention and possibly due to stress. They said they didn’t know how, but the tests at the hospital by my university were all wrong and that the new tests didn’t show any seizure activity. I was told to discontinue all my anti-convulsants and “live” with the episodes. Then, I was mandated to therapy before I could return to school.
I continued to have these episodes from 1995 until at least 2001. In addition to these episodes, I’d have moments where I’d completely lose track of time. I’d “wake up” in class and not know how I had gotten there. I also began having these spells. I would wake up in the middle of the night with sweats. Immediately, nausea would hit. Shortly after I would be in the bathroom vomiting. This would happen at least three times a week. The sweats would be so bad that I would have to change the sheets on my bed and the mattress would be soaked. I could barely get to the bathroom in time.
Sometimes the Resident Assistant would find me passed out on the bathroom floor lying in my own vomit after a seizure. I became a recluse because I never knew when these moments would come. I just lived with them. No doctor would help me. They suggested that I was Pregnant (if I was, It would be a miracle by God for one and for two the longest pregnancy ~ two years plus .. I think not) or had an Eating Disorder or just an Anxiety Disorder, but no one would even do simple blood work to rule out any illness or infection.
When I started dating and eventually married Robert, he convinced me to see a doctor about the cold sweat/vomiting/diarrhea part of the episodes. I saw a nurse practitioner (NP) that seemed understanding. She did all these blood tests and one suggested that I might have a Thyroid problem. I was relieved and scared at the same time. Then, a second test came back and my Thyroid was deemed normal. She suggested that it was all in my head too and sent me on my way with antidepressants and anti-anxiety medications. I was devastated by her drastic change of opinion. I decided to take them anyways because I was desperate for help. At this point, they did help some because I was a wreck just living with the symptoms. But, they didn’t help even in the slightest with my physical symptoms. However before I even had seen the NP, the seizures had gone away. I was thankful for just the slightest reprieve.
Sometime in 2003/2004 time frame, I felt a lump in my breast. I was in for the scare of my life when the ultrasound tech scanned my breast. After taking longer than I thought it would to find the lump, she said, “Oh wow. Hold on let me go get the Doctor.” He came in and asked her for a few more scans. I immediately ran back to my NP who sent me to a surgeon that specialist in breast lesions. Once the surgeon saw my scans, she suggested a biopsy which would include cutting out the entire lump. I also talked to her about my birth mark which was a heart shaped mole on my right leg. Since I was being put under for one surgery, we both decided that it would be beneficial to go ahead and remove the mole at the same time for biopsy. It had grown in size over the last few years and the color had changed slightly. What if I had cancer and that was causing the episodes? I was terrified, but hopeful for answers.
Well both things came back clear. Praise God for small miracles. However after the surgery, I started feeling worse. My nausea/cold sweat episodes were worse than ever. About twice a month I’d wake up with severe cramping. Also, I would have episodes of severe vertigo and dizziness. I went to the ER several times because I felt the world moving around me. I could barely walk from the bed to the bathroom without having to crawl because of the extreme dizziness. The doctors would listen to my symptoms, give me an IV of Ativan and send me on my way without running a single test. One night (I think it was in 06, but the dates are really running together now), I woke in tremendous pain.
I refused to wake up my husband because I felt I had woken him up too many times in the previous few weeks. I just went to the couch and doubled over in pain. I tried everything from heat to food to going to the bathroom. Eventually, I wound up waking my husband and we went to the ER. I was insistant that it was probably gas, but upon several scans of my belly they discovered that my gallbladder was infected and had gall stones. I wasn’t even given time to think twice. In less time than it took to get the scans, I was headed back for surgery to remove my gallbladder.
I was thrilled and hopefully that all my GI problems would go away. I thought my troubles were over. If I knew then what I know now, I would know that surgery was just the beginning of my troubles. A few weeks after that surgery, I was bit by another tick. I didn’t realize it at the time because it was hidden. I kept having this itch. However, my body itched all the time so I figured that was it until I finally decided to look. There it was. A huge blood sucking tick attached to the back of my knee. I went to my neighbor’s house to get it removed because it was in such an awkward place that I knew I would never be able to remove it safely. After it was gone, I thought nothing of it. While some symptoms got better after surgery, some of them got worse. I began to have joint pain and extreme fatigue. Then it happened, I got the flu. I thought, “Are you kidding me? … Surgery, Tick Bites and the FLU? Come on now. This is ridiculous.”
I went to the Urgent Care with my flu like symptoms and for some reason mentioned my tick bite. They immediately said I had Lyme Disease. They were kind and compassionate and sent me home with two weeks of Doxycyline. They informed me that sometimes Lyme tests come back negative that quickly after the bite, but that they were positive I was Lyme infected. If I didn’t feel better at the end of the antibiotics, I should come back immediately. I was surprised that not only did they give a blood test, but they gave me treatment! I had no idea how surprising this would actually turn out to be.
Each day on the antibiotic I felt better. Many symptoms went away, even some things I had lived with for a decade. Within a week of finishing the antibiotics, I felt immediately worse. The flu was back. ARE YOU KIDDING ME I thought. I went back to the Urgent Care and they said that sometimes strains of Lyme Disease are particularly tough and that they would give me the 2nd round of antibiotics. They sent me home with 2 weeks of Amoxicillian.
About the same amount of time upon finishing the antibiotics, I felt the same thing. Extreme fatigue was the worst. I would fall asleep sitting at stop lights. It was horrible. I started having tingling in my legs and arms, muscle weakness, extreme dizziness, cold sweats, joint pain and the symptoms just go on and on. I went to my regular doctor and told her all of this. She sent me home with four weeks of antibiotics and said that if I did have something bacterial (she said that I also had a terrible ear infection) that it would clear up with that. It was during these four weeks of antibiotics that I walked right into a glass door. *gasp* I was horrified. Some points I felt worse and at some points I felt better. At the end of the four weeks I finally felt better, but two weeks later the symptoms came back.
I was shocked. During this whole time, she also started me on some anti-inflammatories to help my joint pain. Only one gave me a tiny bit of a reprieve ~ Celebrex. She had given me a sample of the drug and it helped slightly so she wrote a prescription (at this point I had wasted tons of money on prescriptions so she wanted to see if it would work first). Then it happened. Insurance DENIED the prescription and it was way too expensive to pay out right. I spent two hours on the phone with the insurance company to tell them how much this particular drug had helped. They said I needed to try FIVE more anti-inflammatories before they would approve the Celebrex.
Each of these other meds caused me extreme G.I problems. Celebrex was the only one that didn’t have me running to the bathroom. Finally, the insurance company approved the medication. But since I was only getting worse and based on my previous history, my doctor’s office suggested that I might have something else. I was sent to a Rheumatologist to be tested for lots of things (one of them was RA Arthritis and the other was Lupus, I don’t know what else can’t remember). All those tests came back normal. The thing that cracks us up to this very day is the answer that the Rheumy gave us after we told her that my joint pain went away while I was on antibiotics. She told us “that shouldn’t happen.” She sent me home with Neurontin to help with my severe headaches and joint pain. At this point, muscle weakness was pretty severe. I couldn’t even open up a jar of baby food or squeeze the bye bye buggy (large stroller) to make it work. I was falling asleep at work and was having trouble staying awake while driving.
My regular doc became alarmed at the muscle weakness and sent me for an MRI of the brain. Then she suggested that I probably had MS and sent me to the neurologist. The Neurologist that read the initial MRI and forwarded me to another Neurologist saw a suspicious area on my scan. He wrote that it appeared that I had some sort of lesion, but he couldn’t be sure what it was so he forwarded me to another Neurologist. That Neurologist suggested that the lesion was merely from old damage such as a bump on the head or old seizure activity.
Then he suggested that I was still having seizure activity. So he had me undergo several painful tests all of which came back negative. On the first appointment with the Neuro, he increased the Neurontin to help ease my headaches even further and suggested that if I were having seizures that the Neurontin would ease those as well. However, my EEG “proved” that I had normal activity. After seeing him for approximately three times with no improvement, my husband and I began to research on the internet.
At this point, I felt that they were treating the symptoms, but not the “disease.” I honestly thought that if I kept going at that rate that there would be an autopsy to find out cause of death. I told Rob that I wanted him to sue every doctor after autopsy. So we started doing research on Lyme Disease. Since it was the only thing I “definitely” had (though eventually all the tests came back negative), we researched it to death against my doctor’s advice and realized that there were specialists in Lyme Disease that might help.
My husband emailed the NC Lyme Disease Foundation president and received an email with two recommendations. One of the two had been in the news in North Carolina and we were wary of whether to go see him even though we knew he was probably the better of the two. However, we knew that the 2nd physician didn’t just have Lyme blinders on. He specialized in other weird things (ala Dr. House) and I decided to send him a letter of my whole story (which is pretty much what I’ve told you today). He called me personally and offered hope. However, I had been given hope before. So while I was hopeful, I wasn’t going to go into the appointment full of naivete . We scheduled an appointment for the end of February beginning of March of 2007.
When I went to his office that morning, the doctor listened to me for over an hour. Up until this point, I had seen any physician at any appointment for the most 15 minutes. Most appointments with physicians prior to this were less than 5 minutes. One was even under one minute. Not this appointment. This one lasted over an hour. He asked my husband and me numerous questions. We answered. I’ll never forget the words out of his mouth, “Jennifer, I know what you have and I can help. You have Lyme Disease. It is written all over your forehead. I will tell you why all of your test results have been wrong and we can work on a plan together to fix you.” I’ll never forget how I felt when I stumbled out of his office for the first time. I felt hope. For the first time since 1995, I knew that someone cared and listened. He put all the pieces of this convoluted puzzle together.
I’ve been seeing him now ever since. I finally got that positive Lyme Disease test in 2009. I didn’t need the physical proof, but it was nice to see it on black and white that LD was indeed one of the problems. As much as I’ve endured the last 18 years, I hope that it helps someone in a small way. I rarely tell my full story because it brings back so many painful memories. I put this out here .. all of it today … because I hope it helps someone. Friend or Stranger.