I’ve had Lyme Disease since I was eighteen years of age. I went undiagnosed until 2007. That is fifteen years of being undiagnosed! I now have Chronic Lyme Disease and I am totally disabled because of this disease and I am 36 years old. I am a mother of three and married to a wonderful man. (He knew I was sick when he married me.) We live in Wabasha, Minnesota. For those of you who do not know where Wabasha is, it is about two hours south of the Twin Cities. (Wabasha is also known for the movies "Grumpy Old Men" and "Grumpier Old Men.")
Most people know me as @MNTwilightMom on Twitter.
The Month of May was Lyme Awareness Month. "Paint May Green." This month is important to so many Lyme sufferers out there. This is how we speak about our illness. We don’t speak out to gain attention or gain sympathy because we don’t want that. Honestly, we don’t want your sympathy; we want to share our stories with you. We want to teach you how to be safe outside. Lyme Disease is REAL! This Disease DOES EXIST. It affects thousands of lives everyday.
We the people who suffer from Lyme Disease love the month of May, because this is the month that we can scream and shout, share the “good” with the “bad.” This is our time!
My story started back in 2002 when I woke up one morning and I could not move. I had such pain radiating through my body that I could not move off my bed. I realized within a few minutes that I could not feel my left leg; it tingled all the way down to my toes as if it were asleep. This was very strange. I went to sleep the night before just fine without pain. Why did I wake up this way? What the heck happened while I was sleeping? The only good thing about this whole situation is that this day was my day off. I managed to crawl out of bed and slither my way to the bathtub and run some very hot water, thinking that this might help. Somehow, I managed to get myself into the tub and lie in the hot water until I could at least feel my leg again. I could not even tell you how long that was.
I ended up calling my family doctor to see if I could get in to see him, because this was not normal. I couldn't explain to the nurse what was happening. I was able to get in to see him and all the normal tests were done: X-rays, MRI, CT-Scan, blood work, and the normal look over, push, poke, does this hurt, tell me what happened, stretch this way, and stretch that way. I figured something would show up, but everything came back normal. I sat there and cried. My doctor did believe me that I was in pain, so he gave me pills to help with the pain and inflammation. Great, but it did not help; I was back in his office within a week.
This went on for the next four years, seeing other doctors and specialists, being sent by specialists to other specialists, being sent to hospital after hospital. I live in Minnesota, so I even went to some of the "best hospitals" in the world. I traveled across state lines and saw their specialists and they sent me to their specialists. I can guarantee that I saw 200+ doctors in four years.
I was told many things by many doctors. Many specialists said I had the following: MS, lupus, Lou Gehrig's Disease, cancer of the liver and lungs, kidney failure, possible tumor in my brain, Bi-Poplar, CFS, fibromyalgia, CRPS, dementia, early stages of Alzheimer’s, restless leg syndrome, rheumatoid arthritis, and my list goes on. I never knew if I was dying or living.
On top of being told I had all these diseases or disorders, I was also told by a variety of doctors and specialists that I was, "faking it," "wanting attention," "trying to get sympathy because I was a single mom with two kids," "wanting to use our welfare system, like all the other dead beats." I was even told, "You're just fine, go out and find a man, get married and live life." But this one is my favorite. “You’re a very pretty woman, STOP feeling sorry for yourself, go out, exercise, go out with your girlfriends, drink, be happy, because NOTHING IS WRONG WITH YOU!"
I was at a certain hospital waiting for hours to see a "specialist," (he was supposed to the best in the world) and my appointment was at 8:00. I finally got in around 12:00 pm to see him. When I walked into his office, he looked at me, looked at my chart and said, "You are fine, your tests are fine, stop faking, you're healthy as a horse! You look great. I wish I looked as great as you, so leave my office so I can see some people who are really sick and really need my help, because you are NOT one of them!" He got up from his chair, opened up his office door and left me sitting there by myself. His nurse came in and said, "Ok you are done now, you must leave!" (This happened at our famous #1 hospital in MN.) It cost me $12.00 to park there and this is what I got for my whole day there....NOTHING!
After that wonderful visit, I became depressed and started to doubt myself. I stopped seeing doctors and specialists for about one year. I thought, "Maybe I was imagining all these symptoms, all my pain, maybe I'm making myself sick!" But within that year, I became worse. My pain never went away, my symptoms never went away, and I became very sick.
Than one day it hit me. I realized that I needed to find someone, somebody to believe me, and I needed to find someone fast or I was going to die. I thought and felt like I was going to die. What would happen to my kids? Where would they go? If not for me, then I have to do it for my kids. So once again, my journey started to find that miracle doctor who would listen to me and hear me. That is all I wanted. Was that too much to ask?
As it is said, "A miracle will happen when you least expect it!" I happened to be watching a television show that evening. It was "Mystery Diagnosis." Having watched it in the past, I knew what it was about, but this one was a new show. This show saved my life and opened doors for me--it was on Lyme Disease. They had a story about a young girl who could have been me! I started to cry (I hardly cry at TV shows). This young girl had everything I had. It was as if I stood at a looking glass and saw myself through it, but it was on TV.
I live in Minnesota, and ticks are everywhere. How dumb can I be? Is it really that easy? Why hadn't all those "DUCS" (doctors and specialists) thought about Lyme disease? They are not much better than me, for not thinking of doing a Lyme test. I cried through that whole story; it was a turning point for me! A door opened up and said, "Walk in, this is your time."
I called my doctor the very next morning, but I could not get in until the end of the week. That whole week I was the happiest I had been in four years, thinking, "This is going to be easy. Go in, get the blood test done, get the results back, get medication and I’m cured."
Boy was I fooled! When I went in to my appointment and told my doctor what I saw on TV and what I wanted him to test me for, he basically laughed right in my face. I could not believe it. One minute I am on Cloud Nine; the next I am right back were I started. After about 30 minutes of being in his office and refusing to leave until he performed the Lyme test, he agreed to do it. But to my disbelief, it came back negative. I was in total shock. I didn't understand. How could that be? I had all the symptoms and signs of having Lyme disease. How can this one simple blood test come back NEGATIVE? My doctor looked at me and said, "I told you it was a waste of time!” I walked out of his office and cried all the way home.
I called his nurse back and asked for a repeat test; my doctor would not do another one for another two weeks. I was so angry I hung up the phone and cried. I was just shattered. I had thought that this was my answer to everything. I ended up having eight Lyme Disease tests done and they all came back NEGATIVE.
That’s when I started my own battle. My battle against doctors and specialists. If they are not going to help, I’m going to help myself. The hell with them!
That was the day I started my own search for an LLMD (Lyme Literate Medical Doctor) and my own Lyme Disease database. I wanted to know everything about this disease. So, when I went back for another blood test, I had all my ducks in order and I had facts in hand. I was going to be prepared this time and I was not going to take any crap from anybody. Especially from a doctor or a specialist who thought he knew more than I did. I didn't care how long he went to school for, or how much he thought he knew. It didn't matter, because I was going to have proof that I had this disease and he was going to listen. I wasn’t going to leave anyone’s office until he did what I wanted.
Well, let's just say that all my research, papers in hand, documented proof that I showed these DUCS, and check-off list of symptoms did not un-nerve them or affect their decision at all. I still couldn’t find a DUC who would test me again for Lyme disease or even believe I had it. These DUCS were stubborn ones and I was getting nowhere with them. I fought so hard for so many years that my skin was getting tougher. I was learning how to fight harder and I wasn’t fighting nice, anymore. If I didn’t succeed with one DUC I went to another and another. I did this for about another six months until I found an Angel.
About two months after seeing that last DUC, I ran into an old neighbor who told me about a doctor that she works for who is a "DO" (Doctor of Osteopathic Medicine). She told me to give him a try; he does treat a couple Lyme patients, and maybe he can help me. He is really good, she stated. After all this time, I had my doubts about all DUCS but, hell, what did I have to lose? Nothing.
I made an appointment to go see this DUC and my first appointment was three hours long, WOW! I was impressed…so far. He took notes, listened, and even took my research papers that I brought in with me on Lyme disease. It explained why I knew I had Lyme disease; by this time I knew I had Chronic Lyme Disease. It had been four and a half years since my first symptoms appeared, and I was on no medications except pain meds.
By this time, it was about the middle of April, 2007. I re-married in October of 2005, to a great guy who married me regardless of my unknown illness. (Even though we both knew what I had.) I have two children; he has one, so together we have three. We moved, bought a house and I was finally on the right path with the right doctor (he is not a DUC, he is my Angel!) and hopefully we could start getting the answers to what we already knew.
My new doctor tested me for Lyme disease in June of 2007 and sent the lab tests to IGeneX. They came back POSITIVE. They were so positive that the doctor had never seen such high numbers on a Lyme Test. I know that doesn't sound good, but I was so happy, I cried. I don’t mean a soft cry--I cried hard. Not that the test was positive, but that my fight was over. I'd been fighting for four and a half years, and my five-year mark was coming up for a diagnosis. Doctors and specialists telling me I'm crazy, me thinking I'm crazy, family members thinking I'm just making things up, others looking at me and thinking, "What's wrong with her, she looks fine. She doesn't look sick!"
I am sick! I may look fine, but I am NOT. And it’s NOT IN MY HEAD!
They started treatment in August of 2007 with a Pic-Line, but that only lasted until November because of blood clots, and then they inserted a port within the right side of my chest.
I have been on five different kinds of IV medications because my body has built up immunity to the medications and they stopped working. I have to be on a nausea medication because the IV medication makes me so sick that I cannot keep food down. I do IV meds five days a week for two and a half hours a week.
Within the last three months, I have noticed my hair is falling out; I have had cysts removed from both of my eyes twice now. Lyme Disease has been gracious enough to affect my body in all ways possible--my speech, train of thought, remembering, standing, walking, working inside or outside the home, normal day-to-day duties (housework), and these are just a few.
My LLMD thought I might have a Co-Infection, maybe two, and the test came back positive. This just means that I get sick more easily and my immune system is completely shot. Lyme disease has turned into Full Chronic Lyme Disease with Neuro Lyme Disease. This means I now have slight brain damage that affects certain areas of my brain. Last winter I needed a cane to help me walk because I couldn’t walk by myself. Thirty-five years old and walking with a cane. That killed me when I had to use it for the first time; I cried the entire time.
My disability finally went through this February. I had to hire an attorney last fall to help me fight. I could not take my case any farther without one. When I went to court for my final hearing to hear if the judge decided for me or against me, the judge said this is the worst case of Lyme Disease he has ever seen in his six years of doing disability cases. He hopes that soon there's a cure, or our doctors wake up and realize this disease is real and affecting our young and old people. He apologized for the suffering I had to endure and the fight I had to go through just to get diagnosed. He said, "That shouldn't happen in the 20th Century with today's medicine and research!" Inside I was jumping up and down.
Update: As of today, May 2, 2010 I am on no medications. My body rejected the last medications I was on because of an illness I had about a month ago. My doctor and I are working to come up with a new medication plan for me. I’ve been without Lyme Disease medication for about a month now and it’s been a long road. My mornings are rough and my nights are rougher. The pain varies with the weather, on how cold or how warm it is. I go in to see my doctor every month for checkups and every six months to have my lungs and kidneys checked, and have MRI’s and a CT-Scan done to make sure everything is still in working order.
Remember, do not ever give up!
Carisa Gorak, Minnesota