As the lyme disease was first settling in, I experienced depersonalization and EXTREME fatigue. I was told I was depressed and that I needed medication. I have been depressed before and I knew this was something bigger, but trying to convince a doctor that isn't easy. Out of desperation, I tried the medication and not only did it INCREASE my symptoms it also caused me to feel as though I was going completely insane and I was very close to hallucinating. I was told I needed to try another medication. When that medication didn't work, I went to another doctor. That doctor told me I was bipolar and needed to see a specialist who would teach me how to LIVE with my symptoms. Insurance didn't cover this specialist and I ended up with MORE doctor bills. She didn't tell me anything I didn't know already and I ended up more frustrated because the bills were piling up. At that point I gave up on doctors. I turned to acupuncturists and for the first time in months, I felt like someone was finally listening to me. Acupuncturists were my first saving grace where I saw glimpses of "normal." I then sought out counselors - but only those that wouldn't try and throw medication at me, but instead truly listened. I attended support groups for people with anxiety.
My symptoms started changing. I had anxiety, panic attacks, sensitivity to smells, sensitivity to light and was now experiencing extreme physical symptoms. I was lactating (I don't have any children), I had major foot pain at all times of the day (some people with lymes only experience morning foot pain)and I was starting to have circulation issues. It started off fairly mild but increased quickly. My hands and feet started turning blue. I had a hard time standing for long periods, but I also had a hard time sitting for long periods. I had shooting nerve pain and twitches. I had pain behind my eyes and started experiencing migraines for the first time in my life. I had many floaters in my eyes and had a difficult time focusing on anything. My vision was blurry. I had attacks where I couldn't breath correctly which was not related to panic, but would put me into a panic attack due to the awful experience of not being able to catch a breath. This symptom alone brought me to the point of ER visits. However, I didn't have any faith in the medical system and I went purely to sit in the ER room in case I past out or stopped breathing entirely.
My next trip to the doctor (the 4th doctor I had seen) - a ND - wanted to do blood work. I hadn't had my blood drawn since the first few weeks that the lyme was settling in. My blood work showed that I had high platelets and the ND was pretty concerned. I had bi-weekly blood draws for over six weeks. We were waiting to see if my platelet count would drop - it didn't and it still hasn't. That doctor - along with two others that she consulted, suggested that I get a bone marrow test as this was showing that I might have cancer of some sort. I was scared to death of having a bone marrow test and wasn't convinced I had cancer.
The doctor I was seeing at that point was doing her apprenticeship and was brand new- but working under many experienced doctors. She ended up sending me out on referrals because she felt she didn't have the time I required. In retrospect, it's probably good that she did this. Otherwise my diagnosis could have drag on for several more months.
Conversations were starting to be had about the possibility of it being MS. I was so scared, but was pretty much convinced that is what I had. I was having a difficult time walking more than a block or two due to joint pain and fatigue. My hands weren't functioning like they should have been. I was twitching all the time. It felt like I had pins and needles all over my body.
Before going in for tests, my fiance and I went camping. He was sound asleep in our tent, while I was wide awake like the many months before, wondering what the hell was wrong with me. All of a sudden, it was like a light bulb went off in my head. It was clear as day to me that I had Lymes Disease. It was the only thing that made sense to me. I jumped on my iphone and started searching symptoms....I had them all! So many things said that many people were often mistaken for having MS before being properly diagnosed. I wish I could say that was the start of my recovery, but I had months to go before getting a proper diagnosis.
