Lyme More Prevelant

I keep hearing of more and more people who have been diagnosed with Lyme disease. Just this month, I heard of two more people who have been diagnosed with Lyme or who have symptoms indicative of Lyme. One of them is a childhood friend. He contacted me a few weeks ago regarding his symptoms and his possible diagnosis of Lyme. He has all of the classic symptoms. I have been trying to help him get the reliable lab tests that he needs to get in order to get a proper diagnosis. Even though he has all of the symptoms, his western blot test came back negative. This disease is so confusing because it is extremely hard to diagnose. Apparently, the diagnosis has to be primarily a clinical one, but blood tests are also considered in the final decision. Does my friend not have Lyme disease because his blood work came back negative even though he has all of the clinical symptoms and the risk factors for tick exposure? I know that some doctors will tell him that he is fine and that there is nothing wrong with him. He needs to find a Lyme literate doctor. I mentioned to him that I can set him up with a Lyme specialist in the Bay Area. The bottom line is that he is suffering right now. I hope that he can obtain a diagnosis of some type soon. The other person with Lyme disease that I heard about is actually the son of one of my Mom's friends. It breaks my heart to hear about all these children contracting the disease. This young man is in junior high and he has been sick for three years already. He is currently being treated with IV antibiotics but he remains extremely ill. It seems to me that every time I mention that I have Lyme disease to someone new, that they, in turn, tell me that they know someone who has it. Just the other day, I was talking to the woman who we adopted our kittens from and she has a friend in Oregon with Lyme. The rate at which the disease spreads is surprising and yet, the experts claim that it is still very rare on the West Coast. There is a disconnection between the reality of the prevalence of the disease and the official statistics on it. All I know is that the number of people with Lyme disease continues to grow.

Feeling Better=)

I can tell that my medicine protocol is finally working!! My doctor has me taking Biaxin and Tindamax. I take the Tindamax on a three week on and three week off schedule. After these last three weeks of taking Tindamax, I instantly noticed that I had more energy and I could think more clearly. For the last three weeks, I have been driving my car almost every day. Driving takes a lot of concentration and energy for me so I know that I am feeling better when driving is not a struggle. I have been able to help out by running errands for my family. I have even been able to socialize with my friends more, which makes me truly happy. One night, I had so much energy during dinner with a friend that I actually talked to her for two and a half hours without becoming exhausted and looking at my watch. As a result, I missed my train home but I didn't mind because it means that I am making progress. I am excited and optimistic that the Lyme meds are finally helping me!!

Pulling My Weight

David and I got married on October 1, 2005=) Lately, I have been feeling guilty that I cannot share the household work with him to the extent that I would like to. Mentally I am happy to help out more. Right now I am pushing myself as it is to be a more active member of our "team." I am taking on the organization of our personal lives. It is a huge endeavor for me because I have so little energy and therefore so little productive time in a day. For the last couple of months, I feel like all I do is paperwork. I know that is not true but it is taking up all of my energy and I still feel like I am not pulling my weight. It is hard to be married and to feel guilty that I cannot do more to help my husband. I am struggling right now. I become defensive if he even sort of suggests that I could have done more because I really want to do more but I am trapped in a body that cannot do more! For the record, my husband is a wonderful, supportive man. He handles my illness with grace. I know that it is normal for him to feel frustrated that he does not have a fully functioning wife. Sometimes he feels as if he has to do everything for us. I do not like that he feels that way but I know that it is beyond my control. I can only do what I can do. I push myself and I try as hard as I can. I cannot wait to feel better and be able to do more for us!!!

Staying the Course of Treatment

For the last three weeks, I have been taking the antibiotic Biaxin and the antiparasitic drug Tindamax. The Biaxin is for the Lyme bacteria and the Tindamax is for the blood parasite, babesia, which I also acquired from the tick. I feel physically so much worse while I am on the drugs. Part of me wants to stop all my treatment and try to live as normal a life as I can with the energy that I do have. I will not let myself give up on my treatment. I have a possibility to get better and I will not pass that up. In the meantime, I have to endure the suffering that the drugs cause in my body. I never know whether the worsening of my fatigue, my headaches, and my diminished ability to think clearly is a result of the side effects of the two drugs or whether it is actually caused by the toxins being released as the drugs kill the parasite and the bacteria. This reaction is called a die-off reaction, or a herxheimer. The bottom line is that I have to get worse before I can get better. My question is: how long will I feel worse for? Will it be for a few months or a few years? I am learning to live with the uncertainty. I am trying to power through the intense symptoms. In a way, I feel like I am sacrificing today for a better tomorrow. I hope that the future will be better.

Struggle at Cold Play Conert

As a Christmas present, my husband bought us tickets to see Cold Play perform at the HP Pavilion in San Jose, California. For those of you who are not familiar with the venue, it is a huge indoor arena. I was so excited for the concert because I love experiences. I have only been to two concerts in the last eight years because music usually bothers my body. It is often too stimulating. When I say that it bothers my body, I really mean my body, not solely my ears. The night that we left for the concert, I felt optimistic that my health had improved enough for me to be able to withstand the volume of a concert. I was wrong. Cold Play came on stage and the volume of their music overwhelmed me. I could not believe that it was really that loud. I could feel the vibration of the sound in my chest. My whole body felt the music. Ear plugs did not help. I started to sweat and to feel the urge to run out of the arena. My husband had treated me to great seats. Well, he meant for them to be great seats because we were really close to the band but, for me, they were miserable. We were too close and the sound was too loud. I tried to withstand the vibrations. My body was feeling awful. It is a hard sensation to describe. It is extremely uncomfortable. My body feels like it is being attacked and my fight or flight response is triggered. I pushed myself to try to stay in our seats since my husband had paid a lot of money for them. I only lasted for about four songs. We decided to see if I could handle the volume if we sat in the furthest possible seats from the stage. Since the concert was sold out, we climbed to the top of the back of the arena. We sat on the stairs for a few songs. I tried so hard to stay. I kept thinking that if I could just make it through half of the concert, then it would be reasonable to leave. We decided to trade our seats with someone who was sitting in our new section. We just wanted to have seats so that we would be more comfortable. Our plan worked out well because two women were thrilled to be given two tickets to much closer seats. After we had been sitting in our seats for a few minutes, I realized that I might be able to stay through the whole concert. I was still overwhelmed by the noise. I still felt the vibrations pounding in my chest but I no longer had the urge to flee. Had my body become more accustomed to the noise level? I’m not sure what happened. I started to enjoy the music. It was still loud but my body had calmed down. For the last 45 minutes of the concert, I really had a great time. It is frustrating to respond to noise levels in ways that other people do not. I wanted to yell out at everyone and ask them how they could just sit there calmly. Weren’t their chests vibrating out of their body also? Even though this concert experience was stressful on my body, it helped me realize that I am getting better. A few years ago, I would never have been able to stay through even one song.

In the ER

Three days ago I became horribly sick. I went to see a good friend play the violin in a concert. By the time she started playing, I felt a little bit nauseated. I tried to brush the feeling aside because it seemed so strange to me because I had been feeling fine during the day.
I ended up having vomiting and diarrhea at the same time for the whole night. Anyone who has experienced both of these problems at the same time can relate to how miserable it makes you feel. I ended up having to go to the ER because I was too weak to sit up, my heart was racing, and I was starting to faint. I also have Adrenal Insufficiency so when I loose too many fluids, my blood pressure drops to a dangerously low level. I have to have IV cortisol to keep me from going into shock. I was too weak to walk down the three flights of stairs from my apartment to the car. I tried to walk and I only made it halfway down. My fiancé had to call an ambulance. I ended up spending six hours in the ER. The doctors gave me the choice to be admitted to the hospital or to go home. I choose to go home. I know that I should have stayed in the hospital but I just had to get out of there! I am so happy to be home. Hopefully, I will not have to go back to the ER. It is miserable to have stomach problems in the hospital when you constantly have to go to the bathroom, but you are hooked up to an IV that is attached to the wall. It just doesn't work. I am still experiencing diarrhea and nausea. My doctors are trying to figure out if I am having a serve herx reaction, a reaction to the Mepron and Zithromax medications, or if there is another cause of my stomach problems. I just want to feel better.
My mom wrote an email to my Lyme Support group friends explaining my situation. I received many supportive emails and phone calls. They have all been wonderful. It feels good to know that other people have gone through what I am dealing with right now. They did make it through. They did get better. I am hanging onto the hope that these symptoms are a herx reaction and that soon I will feel even better than I did a few days ago. Maybe I just have to go through this suffering to get better.

Fainting

Two days ago I went to the doctor to have more blood work done for my Lyme disease doctor. It was a fasting blood test so I had not eaten yet that morning. The nurse could not draw blood from my veins. He eventually had to try a vein near my wrist. He finally found a vein but the needle hurt so badly. I have never experienced that much pain from just puncturing my veins. Right after the pain, I felt myself start to faint. I told the nurse and he told me to take a deep breath. That did not help because I was blacking out. I couldn't see him. I know my body. He should have listened to me instead of dismissing me. I have problems with my autonomic nervous system and with my adrenal glands so I have fainted many times. The next thing that happened was that I was dreaming. The dreams were coming faster and faster. I do not remember what they were about. The next thing I knew I came to with my head in my lap and I could see six pairs of feet surrounding the chair. Apparently, I had been unconscious for a few minutes. The head nurse was talking to me and she told me that I had to keep talking to her and to keep my eyes open. It was so hard for me to stay awake and to talk. I felt awful and extremely weak. For the next hour, I lay in a reclining chair. I kept feeling as if I was going to faint again. I haven't fainted like that in a few years. I went home and felt awful for the rest of the day. It is frustrating to have that happen and then to have to "pay" for it for a few days. I am still not feeling back to what is "normal" for me. The ridiculous part of this story is that I am not scared of needles or of having my blood drawn. I think that the stress of the pain on my system before I had eaten or taken my adrenal medicine caused the fainting reaction. Now eveyone is going to think that I am afraid of needles. I hope that I do not faint again for a long time because when I wake up from it, I feel awful. I was so weak that it was really hard to talk for about 1 hour. What is going on right now? First I hurt my back and now I fainted. I just want to feel better.

Found a Support Group

Yesterday I attended a Lyme disease support group. I was surprised to find 25 people in attendance. All of the CFS support groups that I have been too are very small. My experience last night was positive, but also intense. I have a serious illness. Lyme disease has caused widespread pain in many families. Some people in the group are worse than I am and some people are better than I am. Usually I know more medical information than most people but this group put me to shame. I realized that I have a lot more to learn. I want to know which bands are positive for Lyme on my western blot test. I want to have a SPEC scan of my brain to check for lesions. I learned so much from the other group members. They even mentioned that Lyme disease is sexually transmitted and that most women pass it on to their children if they are not treated during their pregnancy. By the time that I left the meeting, my head was swimming with new information and new questions. I finally feel that other people understand what I go through every day. They have the same symptoms! It is amazing! There were actually two other members who had also been diagnosed with CFS for at least seven years and who now have been told that they actually have Lyme disease. Slowly I am accepting that I do not have CFS and that I truly do have Lyme disease. Meeting people who have the same symptoms that I do is actually encouraging to me. One woman showed us her PIC line in her arm. I really hope that I do not need IV antibiotics because I don't want to have a needle in my veins for months. Overall, attending the support group was a great experience. I recommend that everyone who suffers from a health condition find an appropriate support group.

Die-off Side Effects

I woke up a couple of days ago feeling awful. I am not sure if I have been pushing myself to do too much or if I am feeling the effects of the Lyme bacteria dying inside my body. When the bacteria die, they release toxins. The toxins can make us sick. The most prominent symptom that I am experiencing is fatigue. I also had a temperature of 100 yesterday. The book that I am reading about Lyme disease, "Coping with Lyme Disease" by Denise Lang, states that fever can be a symptom of the release of toxins. I have also noticed a marked increase in my klutziness. My cereal bowl flew out of my hand the other day. It was so ridiculous that I started laughing uncontrollably. Sometimes my fiance will witness me drop an object in a strange way and all we can do is laugh. This increase in my symptoms must be a die-off reaction but there is no way for me to know for sure. I hope that it is a die-off reaction that I am experiencing because that would mean that the antibiotics and the antiparasite medication that I am taking are doing their job=)

Back Injury-Good Move

Maybe injuring my back was a blessing. Since I can barley move, I have been forced to stay on the couch all day. I have been reading everything I can get my hands on about Lyme disease. I am getting used to the idea that I probably never had CFS and that I have had Lyme disease for seven years. Lyme disease is more treatable than CFS but it is also a more serious disease. I read in the doctor's office and in my own research that I can pass it on to my child. Wow, that information is scary. I am used to the idea that CFS patients have healthy babies. It is a very good thing that I now know that I have Lyme because I am planning on trying to have a baby in the next few years. I need to learn more about Lyme and pregnancy. Some of the literature says that women with Lyme can never breastfeed because the Lyme bacteria pass into breast milk.
The more I learn about Lyme disease, the more I am accepting that I have it. I have so many of the weird symptoms like sensitivity to sound, sensitivity to light, clumsiness to the point of dropping things, and worsening of my symptoms during my menstrual period.

Fell Down

The morning after my doctor's appointment, I fell in my apartment and hurt my back. I was putting together a chair to use to sit outside in the sun in and read about Lyme disease. I went to sit in it and it was not assembled correctly so I hit the hard would floor with my back. For a few minutes, I was unable to move at all. I tried to sit up but I couldn't. I was really scared that I had broken a small bone in my back since my bones are weak. I called my finance and my mom. They both drove home to help me. I managed to get up eventually and crawl to my bed. I lay on my bed for over an hour waiting for them to get here.
After spending the afternoon in urgent care, I learned that I did not have any broken bones, but that I had sprained my back. I feel ridiculous. I found out that I had Lyme disease and now I have injured myself. I feel like I am a disaster because I am always struggling with my health. If it isn't one thing, it's another. I am in a lot of pain. Back injuries are terrible. I can barley walk. I have to waddle around with my butt sticking out=) I feel relieved to know that it should heal on it's own over time. I just hope that the pain gets better soon.

Lyme Disease, Not CFS

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!

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.

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.

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.

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!