Today I saw a specialist in Lyme disease, Dr. Christine Green. She confirmed the diagnosis of Lyme disease through clinical observations and test results. I have a positive Western Blot test and a positive result for the tick carrying parasite Babesia. Dr. Green actually told me that she has never seen such high numbers on the Babesia test. We spent most of the appointment time going over my medical history. It felt strange to recall my symptoms from seven years ago. I remember exactly how my body felt when I first became sick. It is strange to think that it was seven years ago. These past seven years, in which I have struggled to regain my health, seem like they have flown by and yet, at the same time, I feel like I have been sick for decades. I spent one hour and a half with Dr. Green and I still ran out of time to recall all of my symptoms. My blood sugar dropped toward the end of the appointment and I had a hard time remembering everything that I wanted to ask her. In the middle of my story, Dr. Green talked about how I have Lyme disease. I had to stop her and ask her if she was sure. At this point, I wasn't sure what I had. All of a sudden my appointment was over. I had so many more questions. I managed to slip in a few before she left the room. She told me that in her opinion I never had Chronic Fatigue Syndrome.
I am completely shocked by the idea that I have been diagnosed with CFS for seven years and now it turns out that I don't even have it-I have Lyme disease instead. I know that I should be excited to finally get a diagnosis that is more precise but I am so confused. Should I believe Dr. Green? I have had so many specialists tell me that I have the disease that is their specialty. I am trying to get used to the idea that I have been misdiagnosed for seven years. What am I supposed to think about the idea that I have been taking thirteen prescription drugs for CFS for years? Did I not need them? Were they ever helpful? I need another appointment with Dr. Green so that I can ask her my questions!
Tuesday, March 29, 2005
Monday, March 28, 2005
Excited to see Specialist
Tomorrow I have an appointment with a Lyme disease specialist. I am excited to meet with her and see what she has to say. I want to know how certain she is that I truly have Lyme disease. I know that the laboratory tests for the disease are not completely reliable and that I do not have joint pain or psychiatric symptoms. I have tons of questions for her. Hopefully, my seven year medical history of this debilitating illness will facilitate the diagnosis. I hope that I can remember all of the important details of the last seven years. Maybe one detail of a symptom I experience will solve the puzzle. Also, I want to know if I have Lyme disease and Chronic Fatigue Syndrome or if I have just one of the diseases. These illnesses are very confusing for the patient to understand.
Saturday, March 26, 2005
Die-off Reaction or Just Tired?
I have been taking the antibiotic Zithromax for a week now. For the first few days, I did not notice any change in my health. Three days into treatment, I developed a bad headache that lasted for 48 hours. I assume that the Lyme bacteria are starting to die and that I am actually experiencing a "die off" reaction. The bacteria are releasing toxins into my body as they die. I am also starting to feel more fatigued. I woke up today feeling awful. My fatigue is so severe that I feel uncomfortable and I can barely get out of bed. I hope that I am experiencing a "die off" reaction because that would mean that the bacteria are starting to die. My fear is that I have been too busy and pushed my body too hard over the last week and that is the cause of my increased fatigue. Hopefully, time will demonstrate for me which scenario I am experiencing.
Saturday, March 19, 2005
Starting Treatment for Lyme
Today I started the drug protocol for Lyme disease. My doctor consulted a Lyme disease specialist who advised him to prescribe 600 mg of Zithromax, an antibiotic, a day for me. My doctor says that I may have to take antibiotics for over a year. I am nervous about being on them for an extended period of time. Long term use is controversial because of the possibility of fungal growth and other harmful effects on the body. I feel optimistic that this antibiotic is going to help me. I have to ignore the part of my mind that tells me that I could be harming my body by taking the antibiotic. I have to reprogram my brain into thinking that if I have Lyme bacteria in my body, then, of course, an antibiotic will be good for me.
Tuesday, March 15, 2005
Celebrating Lyme Disease
Today, I called my fiancé and my parents to tell them my great news: I have Lyme disease!
During the last seven years, I have received many different explanations for my misbehaving body (otherwise known as my symptoms). As of yesterday, I believed that I had Chronic Fatigue Syndrome which was caused by a malfunction in my hypothalamus in my brain. At least, that was the theory that made the most sense to me out of all of the theories that have been presented to me. I will write more about the theories that can be applied to Chronic Fatigue in later posts.
I have been sick with a mysterious and debilitating illness for seven years now. It struck me five days before my 21st birthday. Over these years I have learned about the cycle of hope that people go through when they learn that their incurable illness may not be the cause of their symptoms and that actually, they may have a different illness, which has a higher cure rate. At one point I was told that I only had Adrenal Insufficiency. My prognosis was that I would make a full recovery in 6 months. To someone who suffers from a chronic illness, this news is wonderful. I experienced the feelings of excitement and hope that I would soon be 100% healthy. Unfortunately, that day has still not come. My doctors have never found an easy answer for my health problems. I never actually had a disease that could be cured. Luckily, I found an amazing doctor in Maryland who has devoted his life to treating patients with Chronic Fatigue Syndrome (CFS). With his help, I have partially recovered from CFS.
You are probably wondering why I consider having Lyme disease to be a good thing. I am actually excited about my diagnosis because for the first time in years my doctors have actually found a specific cause of my symptoms. A test actually exists for Lyme disease! My fellow CFS suffers know how frustrating it is to have an illness that has no test. For once, my doctors know exactly what bacteria have invaded my body. Usually, they operate on educated guesses as to what is happening inside my body. Even though my experiences over the last seven years have taught me to remain cautious about my potential to be cured, I am still hopeful. There is a chance that I actually do not have CFS, but rather Chronic Lyme Disease. The reason I am so excited about this possibility is that Lyme disease is more treatable than CFS. The treatment is to kill the Lyme bacteria with antibiotics. I have the potential to feel much better after many months of antibiotic treatment.
How does having Lyme disease relate to my CFS? Do I still have CFS and the endocrine dysfunction? These are all questions that I need answers to.
To celebrate my potential to finally get better, my fiancé and I went out to dinner. We laughed the whole time about how we were celebrating the fact that I have a disease. Those of you who suffer from CFS and Fibromyalga will understand exactly what I mean! Just the simple concept of knowing what disease I have and how to treat it is thrilling.
I told one of my best friends tonight about my new diagnosis of Lyme disease. I could hear the excitement in her voice. She understands the hope and the potential that this diagnosis could bring me. My friends have been my lifeline during these past seven years. Talking to my friend tonight left me with a huge smile=) I feel hopeful that treating Lyme disease will help me!
During the last seven years, I have received many different explanations for my misbehaving body (otherwise known as my symptoms). As of yesterday, I believed that I had Chronic Fatigue Syndrome which was caused by a malfunction in my hypothalamus in my brain. At least, that was the theory that made the most sense to me out of all of the theories that have been presented to me. I will write more about the theories that can be applied to Chronic Fatigue in later posts.
I have been sick with a mysterious and debilitating illness for seven years now. It struck me five days before my 21st birthday. Over these years I have learned about the cycle of hope that people go through when they learn that their incurable illness may not be the cause of their symptoms and that actually, they may have a different illness, which has a higher cure rate. At one point I was told that I only had Adrenal Insufficiency. My prognosis was that I would make a full recovery in 6 months. To someone who suffers from a chronic illness, this news is wonderful. I experienced the feelings of excitement and hope that I would soon be 100% healthy. Unfortunately, that day has still not come. My doctors have never found an easy answer for my health problems. I never actually had a disease that could be cured. Luckily, I found an amazing doctor in Maryland who has devoted his life to treating patients with Chronic Fatigue Syndrome (CFS). With his help, I have partially recovered from CFS.
You are probably wondering why I consider having Lyme disease to be a good thing. I am actually excited about my diagnosis because for the first time in years my doctors have actually found a specific cause of my symptoms. A test actually exists for Lyme disease! My fellow CFS suffers know how frustrating it is to have an illness that has no test. For once, my doctors know exactly what bacteria have invaded my body. Usually, they operate on educated guesses as to what is happening inside my body. Even though my experiences over the last seven years have taught me to remain cautious about my potential to be cured, I am still hopeful. There is a chance that I actually do not have CFS, but rather Chronic Lyme Disease. The reason I am so excited about this possibility is that Lyme disease is more treatable than CFS. The treatment is to kill the Lyme bacteria with antibiotics. I have the potential to feel much better after many months of antibiotic treatment.
How does having Lyme disease relate to my CFS? Do I still have CFS and the endocrine dysfunction? These are all questions that I need answers to.
To celebrate my potential to finally get better, my fiancé and I went out to dinner. We laughed the whole time about how we were celebrating the fact that I have a disease. Those of you who suffer from CFS and Fibromyalga will understand exactly what I mean! Just the simple concept of knowing what disease I have and how to treat it is thrilling.
I told one of my best friends tonight about my new diagnosis of Lyme disease. I could hear the excitement in her voice. She understands the hope and the potential that this diagnosis could bring me. My friends have been my lifeline during these past seven years. Talking to my friend tonight left me with a huge smile=) I feel hopeful that treating Lyme disease will help me!
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