11/21/10- Lyme or not?

First of all, I am not depressed. I know how incredibly lucky I am. I have a very supportive family who I know loves me and would do anything for me. The same thing goes for my boyfriend and my good friends. Yet I have days, moments, etc where I feel like it’s just too hard to go on. I sound like a crazy person. Is it the lyme talking? Is it even lyme? I remember the first time my neck started hurting. It was the fall/winter time of my freshman year. I had gone to Pittsburgh for the day to do some class assignment with a couple of friends, and on the drive home the right side of my neck started hurting incredibly badly. It was around the time my school had a couple of meningitis cases, and I joked that I could possibly have caught it.

I remember being at work and the neck pain coming back. This time it would radiate to the sinus area of my right side. The pain would be severe, and I would attempt to ignore it, blaming it on sinus troubles.

These pains only continued to get worse. It’s funny how a lot of random symptoms can happen to someone, and you never get the bright idea to connect any of them. I lived my sophomore and junior year getting these pains every time it rained, or after I drank, or sometimes just because. My mom thought they sounded like migraines so off to the neurologist I went. He gave me some sort of dissolving migraine preventing tablet and lortab. The lortabs seemed to take the edge off, and the tablets seemed to calm them down. I just figured I was someone who occasionally got migraines, no biggie. I slept a crazy amount those two years. Some days I didn’t want to get out of bed. I had also been experiencing a bad break up so I chalked everything up to that. The neck pain continued, sometimes with a migraine, sometimes not. But it was getting worse. I can’t remember the exact order of everything, but I know I moved home and began nursing school. I continued to get these frequent migraines so my neurologist started me on daily pills to try to stop them. Beta-blockers made me depressed. Topamax make me forget everything and feel kind of crazy. There are other medications that I can’t even remember the names of. I decided physical therapy could be the next answer. I hated taking all of these pills and their yucky side effects! Physical therapy did help, but I was still getting these unbearable migraines. And I had other weird, random pains. My hips would ache. Something always seemed to hurt and I felt like I was in a fog at times. Did I need glasses? Was it the stress of nursing school? Was I just crazy?

Next was the herbalist. She gave me a lot of pills and told me to go to a ‘specific chiropractor.’ I had been to one before and always felt a lot worse after. This one was supposed to be different. He said he could help. He said he could fix me. After a few weeks of devoting my time to these herbs and getting my neck cracked, I was feeling worse. No more chiropractors. I do think the herbs helped my immune system. But nothing was taking the pain away.

Back to the neurologist and physical therapy. Then to an osteopath. He thought something was wrong with my joints or something in my neck and I needed something called prolotherapy. Basically, big scary needles into my neck to help scar tissue develop.  But I had started losing hope. He also felt I needed hormone therapy. I was 23- how could I possibly need hormones?? (looking back, Lyme does screw with  many of our hormones!)

Before I decided to get the big needles in my neck, my boyfriend took me to see his father, a TMJ specialist. Along with this neck pain, I had jaw and shoulder pain. My jaw always cracked, no big deal right? Well maybe this is why everything hurt! If the jaw is off, the neck gets thrown off, then the shoulder is messed up, then the hip. Is this my answer? After months of treatment and braces, I still hurt. I was getting worse. Wtf? Ok on to a new doctor. This doctor really listened to me as I described the neck and shoulder and jaw pain, the hip and random areas of my body aching. She wrote everything down. She said she had a similar story and it all came down to one thing- Lyme disease. I had over 12 little vials of blood drawn. The results came back- positive? She said they were positive, but also said a lot of other doctors would say they weren’t. Okay, how the heck am I supposed to take that?? Do I or don’t I? Then came my own personal research phase. I think I do have it! Or do I? It seems the second I become comfortable with this diagnosis, something comes into the mix and I question it. Why isn’t there more definitive research? There really seems to be a big gaping whole in the medical world regarding Lymes disease. The whole thing drives me crazy. Now I am on effexor and neurontin and attempting to ‘boost’ my immune system before I start hard-core antibiotics. I still get the migraines, but now I have a new kind of head ache. I literally feel like my head is being squeezed and my sinuses and shoulders and well, basically whole head just hurts! Makes me incredibly nauseous. All of it just makes me want to give up. And then I feel guilty for saying it because I know how much worse it can be. I could have cancer, or MS, or some other scary problem. Someone could have died.

If it is lyme, why the heck did someone not discover it sooner? If it isn’t lyme, then what the hell is wrong with me? It’s scary, frustrating, annoying. I hate feeling like so exhausted all of the time and not wanting to do anything. I know it’s frustrating for my friends and boyfriend as well. Heck, most of the time I wouldn’t want to hang out with me, so why would anyone else? I am a brand new nurse and I had to quit my job. Night shift was ruining me. I would come home hurting in every part of my body. I was almost getting used to the pain. How am I supposed to work now? Do I need a second opinion? I hate all of this. Yuck.