Erika's Outlook

It's a Girl!

2010-11-12T15:04:00.000-08:00

We found out today that our baby is a baby girl! My husband and I went in for my 20-week ultrasound to check the anatomy of the baby and to determine the sex of the baby. At a previous ultrasound at only 13 weeks, the ultrasound technician told me that the baby was probably a boy. We have been thinking about the baby growing inside me as a "he" these past seven weeks. We were ready to have a little boy. When the ultrasound technician today said, "well, it looks like a girl," we were shocked. We both said, "excuse me what did you say?" We are just as excited to have a girl but we are definitely surprised. Since this is our first baby, it doesn't really matter to us what gender it is. I will have to get used to calling her a "she" from now on. I have always wanted a girl so I am thrilled because now I don't have to wonder if I will ever have a girl because we are starting with a girl. I don't think that I will ever forget this big surprise!

I'm Pregnant!

2010-11-11T14:40:00.000-08:00

I am five months pregnant! I have been excited to share my news with those of you who read my blog for a few months now but I had some complications so I wanted to wait until they resolved. I had a hematoma of blood in my uterus, which made my pregnancy very risky. My doctor put me on restricted movement. I didn’t have to stay in bed but I could not lift anything more than a couple of pounds and I could not walk more than two to three blocks. I had bleeding on and off for ten weeks but I am happy to report that the extra blood has been reabsorbed and everything looks good with the baby=) My husband and I definitely experienced some nerve wracking moments when we did not know if our baby was going to survive but as of right now our baby appears healthy! I have made it to the halfway point in my pregnancy-20 weeks down and 20 weeks to go. The due date is March 27, 2011. We are thrilled!

Health First, It worked!

2009-08-06T16:58:00.000-07:00

In early June, I made the commitment to myself to spend the summer trying every single suggestion that a doctor gave to me. I want to get better. It isn't that I haven't wanted to get better in the past but right now I am willing to feel worse, or herx, and miss out on social events if it means that I can make some progress. Sometimes I stop taking a drug for a week before an event, like a wedding, so that I will not experience any die off reactions, or herxing as we call it, and therefore I will feel better and be able to attend the event. I try to balance my treatment with my quality of life. When you have been sick for 11 years, it changes how you view taking breaks from the treatment. I have been forced to figure out how to have a life, or as much of one as I can, while being sick. If I could just power through all of these drugs and treatments and get better, I would do that in a heartbeat. The problem is that with Lyme disease the treatments can be just as bad as the disease. I definitely feel worse when I take antibiotics and parasite medications. Sometimes I have to take a break and feel well enough to see my friends for a weekend. For this summer, I decided to take all of the medications, supplements, and suggestions that my doctor's prescribed no matter what I might miss because of feeling worse.
It is now mid-August and I am happy to report that after following all of my doctor's suggestions, I have more energy. I am thrilled but also kind of shocked. For years I have taken so many drugs and they only help me about 10%. For the past 8 to 10 weeks, I took high doses of Alinia and Malarone drugs for my Babesia infections. The first week on the drugs, I herxed so badly that I spent a week on the couch due to fatigue. Eventually, I could tolerate more and more of the drugs. I also hunted down every supplement that all three of my main doctor's recommended. I ended up calling some strange telephone numbers in different states to hunt down supplements. One woman on the other end of the phone asked me if I wanted the supplement for my garden. I had to tell her that I was supposed to ingest it. After taking so many supplements, medications, and herbs a day that my stomach constantly felt overly full, I decided to practice yoga, sit in hot tubs to raise my temperature to kill the bugs, and exercise (as much as I could). I even changed my diet. I made the yoga and exercise a high priority so that no social engagement would ever come before them. I felt empowered that I was finally using all of my resources to try to get better. I had no idea if it would work because of my slow progress in the past but it did!!! I have more energy now. I am not cured but I am more functional. I can do multiple things in each day. I still can't work or finish college but I am out of the house and exercising! The big question is: what is helping me? Is it a combination of medications, changing my diet, and doing yoga? I tried so many different ideas at once that it is hard to tell. My next task is to figure out what is finally helping me.

Help for Hypoglycemia-Finally!

2009-07-26T16:43:00.000-07:00

After three years of searching for help for my hypoglycemia, I finally found a partial answer. I have been taking the type II diabetes drug Januvia for three months. I take 100 mg with breakfast (the diabetes dose is 300mg) and it helps keep my blood sugar more stable throughout the day. I am thrilled to have found something that helps but it only takes the edge off of the hypoglycemia. I still have to eat a lot of fat and protein every 2-3 hours. I continue to experience the shaking, the sweating, and the mental confusion symptoms between every snack/meal. My hypoglycemia problem clearly is not solved but my symptoms are less severe than they were before I started Januvia and I have stopped gaining weight. I estimate that I am 20% better. I have actually lost six pounds since I started it. I only take 1-2 glucose tabs a day as opposed to 10 to keep me from fainting when it drops quickly. I am relieved to find a drug that helps. I am not crazy. For a few months, I tried the other type II diabetes drugs, Metformin and Byetta. Both of those drugs caused my blood sugar to plummet. My hypoglycemia was worse on the drugs than it was before I tried them. One occasion I was headed to the ER because my vision narrowed and I was too weak to walk and then I suddenly thought to try a glucose tab and it worked. My symptoms vanished and we went back home. My question is why does Januvia help me when Byetta and Metformin made me worse? My doctor is not completely sure why Januvia helps my blood sugar from going as low but he told me that Januvia might even out the pancreas’s release of insulin. I want to understand all of the details about why Januvia helps me so that I can understand what is wrong with my body in the first place. Unfortunately, Januvia is a new drug that we know little about. Does anyone out there know why Januvia helps me when Metformin makes me worse? I am excited to have found a drug that helps. Hopefully, I will loose more weight and my hypoglycemia will continue to improve. I take my hypoglycemia symptoms day by day and I assume that if I can learn more about how Januvia works, then I will eventually solve this hypoglycemia puzzle.

Unfortunately No Tumor (yes, you read it right)

2009-05-07T22:05:00.000-07:00

In the past few months since I wrote my last blog entry, I have continued to struggle with my hypoglycemia. When I described the worsening of my symptoms to my endocrinologist, he assumed that I must have a rare tumor called an insulinoma and he ordered a CT scan of my abdomen. I felt as if a medical professional was finally taking my symptoms seriously. Of course I started researching insulinoma online. An insulinoma is a small tumor, usually on the pancreas, that secretes it's own insulin. The secretion of insulin causes blood glucose to fall. Most of the stories of people with insulinomas sounded just like me. The other patients had gained thirty or more pounds in the last year and a half and they were eating constantly. The treatment for an insulinoma is to surgically remove the tumor. Usually the patient will be cured after the surgery and the hypoglycemia will not return.
I actually started hoping for a tumor. How insane is that? My hypoglycemic symptoms are so miserable that I would rather have part of my pancreas removed than have to live with them. I underwent an abdominal CT scan and an MRI of my pancreas but neither of the tests showed anything. The results were negative and I didn't have any tumors. I was kind of relieved that I didn't have to have major surgery but I was back at square one! I feel like I move in circles with my health. I usually end up at a point on the circle where the doctor says that he has no idea what is going on in my body. I have actually been told that I am a patient who is in a black box in which the doctor's cannot see into. They tell me that I clearly have serious blood sugar issues, but that one or many of about 100 different reactions or operations in the body could be malfunctioning. Why am I the only patient that my doctor has not been able to help in 23 years of teaching at Stanford Medical Center?
I refuse to give up on finding an answer for my hypoglycemia symptoms. I am just not sure where to go from here.

Loss of Brain Function with Hypoglycemia

2009-01-19T14:16:00.000-08:00

Since November, my hypoglycemic symptoms have continued to worsen. The hypoglycemia is now causing me more acute problems than the Lyme disease causes. During the course of an average day for me, I experience nausea, shakiness, sweating, hunger, and the inability to think clearly every two hours and sometimes even more frequently. The symptom that has become the most prominent is my rapid loss of cognitive function when my blood sugar drops. One minute I will start to feel slightly shaky and hungry and five minutes later, I cannot comprehend what is on a menu. My husband has had to read a menu and decide what to order for me. As my blood glucose levels drops, my brain doesn't have enough glucose to function properly. It is a terrible and bizarre feeling. When I start to feel like I need to eat, I only have five minutes or less before my brain stops functioning. I have to concentrate extremely hard just to make a sandwich. I realize that this symptom is more unusual than the sweating and the shakiness that most of my friends experience when they have hypoglycemia. On Thanksgiving Day, I did not eat enough protein with my lunch and my blood sugar plummeted. While we were sitting at the table for our holiday meal, I could not think straight. My husband says that I said some strange things during the meal. I remember feeling weak, spacey, and faint (and this was after snacks and glucose tablets). I just wanted to lie down but I had to keep eating because I knew that only food would make me feel better. I don't remember what we talked about during Thanksgiving dinner. I know that I sat at the table and I ate two plates of food but that is all that I remember. After the food was digested and it had raised my blood sugar level, my brain function returned to normal. Not only is my cognitive function getting worse with the hypoglycemia, but also I have to consume more quantities of food before the symptoms disappear. Why did I have to eat multiple snacks and two plates of Thanksgiving food for my symptoms to abate? A recent example of this brain function issue is when my Mom started asking me some basic questions while I was hypoglycemic and I could not answer her and I could not process her talking to me. It was too much for my brain. I felt terrible at the time and I just wanted her to stop talking. Ten minutes and one sandwich later, I had recovered. I keep telling my endocrinologists (yes, I have more than one) about these symptoms but they tell me that they do not know how to help me. I am the rare patient that they do not know what to do for. I am sick and tired of being the rare and “special” patient. I just want to find a cure for one of my problems. If my hypoglycemia could get better or resolve, then I could concentrate on treating more of my Lyme symptoms.

Hypoglycemia worse? Really?

2009-01-04T13:26:00.000-08:00

A few months ago, I wrote a blog entry about my hypoglycemia symptoms. I thought that they had reached the apex and that they could not get any worse and yet, they are worse! Most nights I cannot sleep through the night without getting up to eat. When I wake up, I don't wake up hungry but I wake up feeling shaky and faint. I keep glucose tablets by my bed so that I can pop one in my mouth and it will keep me from fainting so that I can walk to the kitchen to find some real food. The strange part is that I always eat a large bedtime snack that is full of fat and protein. That snack used to ensure that I could sleep through the night. Now, it seems that no amount of healthy food can keep my blood sugar in a steady range. What is going on? This lifestyle is insane. I am completely controlled by food. Sometimes I don't even have an appetite but I have symptoms and the only way to make them go away is to eat. I can actually be found eating a protein bar in bed these days. I just want to sleep but I have to eat and grabbing a bar by my bedside table is the fastest path back to sleep.
For a few weeks, I kept a food journal and I counted calories. I am eating approximately 3,000 calories a day. Some days I try to eat less, because I have gained 35 pounds in the last 2 years, but the decrease in food intake just makes my symptoms occur more often throughout the day. I reach for a cheeseburger and I feel like I am eating to survive (and yet I am packing on the pounds). I know that if I eat a meal or a snack with a large amount of fat and protein that I might ensure an extra 30 minutes before my symptoms come roaring back. I am currently seeing another endocrinologist. So far, all of my doctors tell me that they do not know why my hypoglycemia is so severe. I hope that one of them finds an explanation and a way to help me SOON!

Obama's Win Causes Fatigue

2008-11-05T21:44:00.000-08:00

Today is the day after Barack Obama won the presidential election. All day yesterday I was excited. I was excited to participate by voting for him and I was thrilled to watch him win. I am happy for our country right now. I have never had such high hopes for a political figure. As a history buff and as an American, I was overwhelmed by the progress that our country has made by electing an African-American president. The event was truly historic. I didn't anticipate how emotional the evening would feel to me. I watched the election coverage last night for six hours. I went to bed happy and I woke up feeling like I had been hit by a train. My fatigue was overwhelming today. I was happy that Barack won but I physically felt awful. Today was a good example of how I can be emotionally and intellectually excited, happy, and relaxed and yet I can feel physically miserable because of the crushing fatigue. I think that I woke up feeling worse today because of all of the excitement that I experienced yesterday. My body does not know the difference between good stress and bad stress. Yesterday was a more stimulating day for me. My body probably put out different amounts of hormones, including adrenaline throughout the day. I can't believe that I feel the same crash into fatigue the day after I have a fight with my husband AND the day after my candidate wins an election. It doesn't matter if I am emotionally happy or sad, my body reacts the same.
During the last ten years of being sick, I have had some people, obviously people who didn't really know me, tell me that something happy would cheer me up and therefore make me feel better. My fatigue is not based on happiness or sadness. I am actually an extremely upbeat and happy person. I feel fortunate to still feel happy after all of the challenges that I have gone through and the ones that I still face every day. I used to feel happy automatically but some days I have to choose to be happy. It is my way of not letting my disease control me. The causes of my fatigue are complex and include adrenal insufficiency, hypothyroidism, and neurological Lyme infection. I am not depressed and my energy level does not correlate with my mood. I can have a day where I am emotionally down and yet my fatigue is better or I can have a day, like today, where I am emotionally thrilled but physically fatigued to the point that I cannot get off the couch for the majority of the day. I think that the fact that wonderful events can cause fatigue that is just as bad as the fatigue that I experience after horrible events points to the idea that maybe my fatigue is related to stress hormone levels. My body might perceive a good even as stressful. It just doesn't understand the concept of good stress!!! I hope that my doctors can help me get to a point where good stress no longer causes such extreme fatigue.

Want a Career

2008-10-12T21:29:00.000-07:00

I am so frustrated that I am 31 years old and I do not have a career. I have not worked since I was a swim coach at age 20. This is not the plan that I had for my life. By now, I was supposed to be a doctor or a psychologist. I would have volunteered in third world countries as a professional. My colleagues would have respected me, etc. I can go on and on about what I would have done if I had not become ill. I used to dream about all of the possibilities in my future when I got well. When is that day ever coming? Will I actually get better? Throughout the years I have had to keep readjusting my goals and my expectations. I have gone from wondering what I want to do to wondering what I CAN do. I still have the same ambitions and desires but it is devastating to physically collapse from every work or education endeavor. I have tried to finish my undergraduate degree three times since I became ill and had to leave Whitman College. Each time I try, I end up back in bed with crushing fatigue. I make myself worse by trying to reach my goals. The biggest goal I have is to get better but at some point, I need to think about my goals outside of my health. Lyme disease is not who I am it is just what I have to deal with every minute of every day.
Since I first got sick in 1998, I have been convinced that I would become well enough to become a doctor, a physician’s assistant, a psychologist, a medical social worker, and recently, I decided that nursing would be the perfect combination of all of my interests. While I was on IV antibiotics at the infusion center, my fatigue improved to the point that I could actually see myself becoming well enough to go to nursing school. I felt so fulfilled that I would have a career. Now, a few months later, I am still no closer to going to nursing school. I think that I was being overly optimistic that I would be well enough to go through nursing school. Now, I have to put the dream of going into medicine on hold. Will I ever reach it? The scary answer is that realistically I don't know if I will ever be well enough. I am angry because I know that I would be a great nurse and yet I cannot be one. What am I supposed to do? What if all I can do is run a few errands on a good day? I used to value myself based on my accomplishments. Now, I don't have any accomplishments besides getting out of bed every morning despite feeling horrible, and tackling my day with a smile and a positive attitude (which is a feat in itself when you have this disease). My true accomplishment is fighting this disease everyday year after year. I have the right goals and the right attitude but I physically cannot work. I hope to have a career someday that represents my personality. I don't know when that someday will be but I am waiting. I refuse to give up on my goals.

These years of being sick have taught me not to judge myself, or anyone else, based on their accomplishments but, rather, on their character.

Kicked out of Infusion Center

2008-09-09T23:35:00.000-07:00

Today I got permanently kicked out of the infusion center. I never thought that I would speak those words. My doctor called me into his office to tell me that the head oncologist at the infusion center reviewed my medical records that stated that I was being treated for Lyme disease and he decided that he did not want me to be treated for Lyme disease in his infusion center. The oncologist also stated that he did not approve of IV antibiotics for Lyme disease. Because he did not agree with my treatment, he stopped it. He is an oncologist, not a Lyme specialist. How does he have the right to decide what treatment is best for me. He has not met me. He has not consulted my Lyme doctor. I would have thought that he would at least want to find out if the treatment is helping me. No, instead he just cut me off. I hate that he had the power to change the course of my treatment and therefore of my daily suffering. The financial cost of doing IV antibiotics at home is tremendous. I never thought that a doctor would deny me my treatment. I always thought that the insurance company would be the one to stop it. What has happened to our medical system that we let a cancer doctor decide whether or not a Lyme disease patient needs IV antibiotics? The oncologist might have known that Lyme disease and its treatment is controversial and therefore he did not want anyone getting treated for it at his infusion center. It seems like politics were more important to him than investigating my case. I have the wrong disease! I don't want to be involved in a controversy over the existence of my disease and of its treatment. I just want to feel better. Other patients with other diseases don't have to fight against doctors just to get the treatment they need. I am in shock that I can never go back to the infusion center again. I am angry with the oncologist and yet, at the same time, I am thankful that I received 9 months of treatment. I should be able to get all of the months of treatment that I need but with this crazy illness, I have to be thankful that I even had some treatment.
I was so close to making it through an entire year of IV antibiotics. They cut me off just 2 months before I would have hit the one-year Mark.
Friends are asking me what I am going to do now in regards to my treatment. The truth is I DON'T KNOW. The IV drugs that have been helping me may not be an option now.

Pregnancy and Me

2008-06-16T13:14:00.000-07:00

For three years now, my husband and I have wanted to have a baby. I can probably get pregnant BUT I can transfer Lyme disease and the coinfections, Bartonella and Babesia, to the baby. The idea of making my baby sick is terrifying. Also, the Lyme and the coinfections can cause problems with the pregnancy. I keep going through months and months to years and years of treatment so that I can lesson the load of bacteria and parasites in my body by the time I try to get pregnant. I want to have the best possible situation for the baby and for me but I don't want to wait many more years. I can protect the growing baby from Lyme disease if I take a pregnancy safe antibiotic throughout the whole pregnancy. The problem with Babesia and Bartonella is that the drugs that kill them are not safe for pregnancy. If I still have the coinfections when I get pregnant, my baby would be unprotected from them. I have been treating Babesia on and off for three years now. My serum levels are almost negative. The bad news is that I recently tested positive for Bartonella. Now, I need to put off getting pregnant and treat Bartonella with IV Levaquin. Sometimes it feels like I will never be done with these treatments and that I will never be given the okay to have a baby. Both of my doctors always tell me that I need about four more months of treatment. Those four months turn into four more months and the time keeps going by.

Horrible Fatigue in Palm Springs

2008-06-02T15:23:00.000-07:00

Four days after my possible line infection scare, I flew to Palm Springs with my family. I am sitting in our condo looking out at the golf course right now. I have been going to the infusion center every week from Monday through Friday since November and it is now June and I finally have a week off. I have been looking forward to this week off for months. I was supposed to be feeling better! Now, my fatigue is worse than it has been in a year. What is going on? It turned out that my line was not infected and that I did have a cold but I am over it now. Did the Vancomyacin somehow set me back? Is it something else that is making me feel terrible? I was hoping to be able to play tennis for the first time in 10 years and now all I can do is lay around. I feel miserable. I don't even know if I can go out to dinner with my family tonight. I am scared that I have relapsed.

Infected Central Line?

2008-05-29T12:40:00.000-07:00

While I was at my routine checkup with my Lyme disease doctor today, she expressed concern that my mediport might be infected. If it is infected, I am at risk for sepsis, or a full body infection. She suspects that it is infected because I have symptoms of an acute infection in addition to night sweats. I know my body and I really think that I just have the bad cold that is going around. Wouldn't I feel terrible if my central line was infected? Wouldn't I have redness or some indication of infection around the site of the mediport? I do trust my doctor so I have to take the precautionary steps in case my line is infected. She prescribed the IV antibiotic Vancomyacin so I am currently at the infusion center watching it drip into my veins. I hope that it doesn't make me feel awful! I have heard that this antibiotic can cause negative reactions also. I am scared that the Vanco will kill more of the Lyme and do it too quickly and I will have a herx reaction. I will keep my fingers crossed that my line is not infected and that the Vanco does not make my symptoms worse.

Hypoglycemia and Insulin Resistance

2008-05-05T16:30:00.000-07:00

I suffer from hypoglycemia, or low blood sugar. I should call it severe hypoglycemia because of the extent to which it controls my life. The symptoms of low blood sugar that I experience are shakiness, sweating, headaches, inability to think or concentrate, and fatigue. I first experienced these symptoms when I become ill in 1998. They have progressed over the years into a huge problem. I remember that the summer after I got married, they became noticeably worse. Around the time that my husband and I were moving into our first house, I had to drive with a soda in the car so that I could keep my blood sugar high enough to be able to concentrate on driving. I have always eaten a healthy mixture of fat and protein and I eat every 3 hours. I thought that my diet helped control my hypoglycemia but when we moved into our house in 2006, I could no longer control it by eating protein and fat. I started to rely on glucose tablets to bring my blood sugar back up quickly. Glucose tablets only help for about 20 minutes and then I have to eat something with protein in it. All of a sudden, I found myself eating a small meal every 2 hours. Two and a half years later I am still getting worse. I have been to numerous doctors and none of them have been able to help me control it. I have tried many diabetes medications that were supposed to help but they all made me worse. What is going on?
The reason that I am writing about hypoglycemia today is that I am experiencing a particularly bad day with my blood sugar. I don't know whether to laugh or to cry. I eat so often it is insane. I have gained 20 pounds in the last year. When I was in Hawaii last spring with my girlfriends, one of them asked me if I was pregnant because I was hungry all the time. When I go to a dinner party, I am hungry for another meal before we have even left the party. I can eat dinner at 8pm and be ready for another dinner by 10:30pm. The worst part is that the only thing that I can do to alleviate my symptoms is to eat. My symptoms come on because my blood sugar drops quickly. I can be fine one minute and seven minutes later I am hungry, shaking, and I cannot think. On occasion, my husband has even had to read a menu to me because my blood sugar is so low that I cannot concentrate enough to read. The symptoms make me feel awful and I seek food to make them go away. I have even had doctors tell me to eat red meat every two hours. That just doesn't seem like a good long-term solution to me. Recently, I found out that chronic hypoglycemia leads to insulin resistance, which leads to diabetes! Am I heading toward diabetes? I really don't need another serious chronic illness!! I have been officially diagnosed with Insulin resistance. The strange part is that insulin resistance is usually a result of being overweight. I was thin for years and now the hypoglycemia and insulin resistance has caused me to need to eat more and as a consequence I have gained weight. My nutritionist tells me that if I loose weight, the insulin resistance will get better. How am I supposed to loose weight when I constantly have to eat to bring my blood sugar back up? Do you see how this is an insane vicious cycle? Today I ate breakfast, two hours later I ate a healthy lunch, and an hour and a half after lunch I had all of my hypoglycemic symptoms back and I had to eat again. Now it has been an hour since the post lunch snack and my symptoms are coming back again. What is going on? My doctors think that it has a lot to do with Lyme disease but they don't know exactly what is causing my body to make too much insulin which drives the sugar lower and then causes me to have to eat again. I better say goodbye for now because my hands are starting to shake and it is hard to type. I have to go eat now. . . again!!!!

More Energy!!!!

2008-04-01T23:53:00.000-07:00

Over the last month of IV Zithromax treatment and IV Rocephin treatment, my energy has improved!!! Fatigue is my biggest challenge and I judge most of how I am feeling by my level of fatigue. Fatigue is not even the right word to describe how I feel. A doctor had to explain to me that the only word that the medical community has for the terrible uncomfortable feeling that I live with every day is fatigue. For the first year that I was sick, I knew that there was something terribly wrong with my body. I felt so weak that I could barely walk to the bathroom. The worst part of the symptom is that even when I lie in bed or on the couch, I still feel terrible. Rest does not necessarily help. It is hard to relax and rest when I feel so miserable. The way that I explain the feeling to other people is that it feels like a cross between the part of a hangover that makes you feel awful and having the flu. The fatigue is unique to this illness for me. I never experienced this weakness before I became ill. It is strange to think that a lot of people have never felt like I feel and therefore it is hard to explain how debilitating it is to live with. The devastating aspect is that it never seems to go away. I always have fatigue but my current drugs have been helping me to feel less of it. I am getting better!!! It feels so good to be able to say out loud that I actually do feel better.

My level of fatigue is directly correlated with my ability to participate in life. My fatigue symptoms dictate my behavior. My behavior ranges from staying in bed and literally being too weak to talk all the way to being able to ski or work on my computer for a few hours. During these past 10 years, I have had this whole range of levels of fatigue and it is hard for friends to understand how they can see me out to dinner one night and then I cannot go do something the next night. What people don't see is that I lay in bed and on the couch all day the day that I go out for the evening and then I have to recover from the exertion of spending the evening out. Sometimes it only takes me a day to recover and other times it can take me a week. It sounds crazy but it is very true!!!!!!! Just because you see me out, does not mean that my life is back to normal. I do have more energy but I am still far from being able to work, which I desperately want to do. Sometimes I feel slightly crazy for doing what I do with so little energy. I flew to Europe when I could barely walk through the airport-I am not suggesting trying that. After I arrived, I spent a few scary and miserable days recovering in my hotel room.

I know that my energy has increased because I drive my car almost every day, I enjoy talking to strangers for the first time in years, I read while I am at the infusion center instead of sleeping or watching DVDs, I am entertaining the idea of a career in nursing, and I am much less interested in watching TV. I find it boring but I still do it to distract myself while I rest. Last week, I even felt bored for the first time in ten years!!! I embraced the feeling of boredom. It isn't that I don't have plenty of tasks to accomplish and list items to cross off, but I felt as if I wanted to learn and to do something new that day. When I am just trying to cope and get through the day, then I cannot think about learning new skills or ideas. It is almost as if I have a few different personalities based on my energy level. I feel my healthy personality shinning through. I have always been the same person with the same attitude but now I am able to let people see it through my interactions. From my voice to my smile, I feel the energy=) I am thankful for these "good" days!

Live from the Infusion Center. . .Hope

2008-03-12T17:03:00.001-07:00

Right now I am sitting at the infusion center while my IV Zithromax drips into me. I was reading a book on hope and how it relates to our health. I have so many questions about hope. What determines who holds onto hope during a challenging illness and who looses hope? Do we all start with the same amount of hope? Maybe the extent to which we have hope stems from our personality more than from our experiences. It could be the other way around. Some patients suffer horrible life threatening illness and have tremendous hope that they will get better and other people only have relatively minor illnesses and they seem to have no hope. People always ask me how I am able to stay positive after suffering and feeling awful for 10 years. It is a hard question to answer. Maybe the idea that I will never give up helps me have hope. I just cannot imagine having to deal with this illness and not being optimistic and hopeful. If I had a bad attitude, I would still have to deal with the same physical problems, only I would be more mentally miserable. Maybe other factors play a role, such as having a supportive family. I have an amazing group of family and friends who support me. Maybe that helps me stay more positive and hold onto hope that my future will be better. I will get better. I choose to have hope. A few days ago while I was here, I overheard an MS patient say that God was torturing her everyday and that maybe it would be better if she died and went to heaven. Listening to her made me so sad. IT sounded like she had given up and that she was truly suffering physically and emotionally. The cancer patient next to her tried to cheer her up by telling her how she copes with her limitations and daily challenges. Sitting across from both of them, I could see how each woman had chosen, whether consciously or unconsciously, what level of hope to possess. Hope is related to optimism. I think that optimistic people probably have more hope than pessimistic people do. I do not mean to imply that having unrealistic hope and blind optimism is always for the best. I think that we have to be realistic about our health situations. We cannot just hope that cancer will go away and ignore medical advice. I cannot just hope that I will be able to go to a job tomorrow. I have tried to will myself to get better and will myself to do what I want to do and it does not work. I usually end up fainting. My body dictates what I can do but I cannot help but wonder if having hope in our minds, helps our body function optimally and therefore gives us the best chance of getting well. I wish that all of us who are suffering can find hope and that the hope can help us reach a better quality of life.

Packing for the Weekend

2008-02-29T13:05:00.000-08:00

I am leaving today for Portland, OR for a weekend trip. My husband and I are going to visit my college girlfriends. It is amazing that I can be 80% sure that I will feel well enough to get on the plane. For many years, I had to cancel trips the day that I was supposed to leave because I was too weak to travel. I can tell that my energy is improving because I actually make it to most of the places that I plan on visiting. The frustrating part of traveling with a chronic illness is that I have to bring all of my prescription drugs and supplements with me. That idea probably sounds like no big deal but when you take 14 prescription drugs, some of which are shots and IVs, the act of packing turns into an ordeal. I am only going away for two nights but I have been organizing my drugs for over two days now. I have to make sure that they have all been refilled so that I do not run out of them over the weekend. I have to pack them with the original prescriptions so that they do not get taken away from me at airport security. I can't believe how many hours it takes me just to pack all of my drugs. I am jealous that my husband can pack for our weekend trip in 15 minutes. I have been making lists about what I will need for this trip for over a week. I forgot to mention that I have to go to the store to buy more protein bars and glucose tablets just to ensure that I do not collapse due to hypoglycemia on the trip. The act of packing becomes more like the act of organizing in my head. Once I get all of my drugs organized, I feel like the extra work was completely worth it. I am just thankful to feel well enough to travel. I just wish that my life could be easier.

A Good Day

2008-02-21T23:47:00.000-08:00

I just realized that I rarely write a post when I have a good day. If I have an outstanding day, I write. If I have a challenging day, I write. If I experience a situation that gets me fired up, I write. From now on, I would like to share with all of you my small triumphs. With Lyme disease, we have to cherish the times when a drug helps or when we feel good for a few hours. Today, I felt a burst of energy in the afternoon. It felt great!! I was able to read while I was at the infusion center and then a friend surprised me by stopping by my house. I couldn't believe it when I looked at the clock and I realized that one hour and forty minutes had flown by while we were talking. Usually after twenty minutes, I am exhausted. I constantly have to manage how I am feeling and if I am expending too much energy etc. Today, I just simply enjoyed talking to my friend. I had enough energy to forget that I am sick. I love it when that happens. After my friend left, instead of lying down to rest, I cooked dinner. I can't believe it. The IV Rocephin and IV Zithromax must be helping me. I feel so thankful to know that the drugs that I am taking are helping me. For two years, I took multiple oral antibiotics and I could never definitively tell if they were making me better. I love that I can state that I know that my drugs are helping my body heal and therefore I have more energy. This illness is so confusing on so many different levels that it is a blessing when there is a direct link between an action that we take and an outcome that we experience. I am taking IV antibiotics and they are helping me feel better. It is that simple. I don't know how I will feel tomorrow, but today was a good day.

Sick with a "normal" illness

2008-02-13T23:34:00.000-08:00

Currently, I am sick with a "normal illness," the flu. I have not been this sick with a flu-like illness since I was 11 years old. I now realize why infants and older people are at risk of dying from the flu. What I have right now is a nasty illness. Part of me feels like I don't deserve to have the flu because I have to deal with not feeling well every day of my life anyway. No one deserves to catch the flu but for people with chronic illnesses, it just creates more suffering. The other part of me is so glad that I have something normal that other people can understand. When I tell people that I have the flu, they respond empathetically right away. They can relate to me and to my illness. Most people have had the flu at some point in their life. It is so strange for me to receive such understanding about the flu when what I deal with every day with Lyme disease is just as challenging. All of a sudden, I am part of the regular population and people respond appropriately. They don't challenge the integrity of my claim that I have the flu. It is refreshing to be able to say in one sentence why I can't come to an appointment and to have an immediate understanding. When I state that I am sick from Lyme disease, I always know that I will have to either provide all of the information about Lyme or I will have to argue the case that Lyme even exists. For those of you who are reading this post and do not have Lyme disease, imagine that you have the flu and you go into a doctor for help because you are feeling horrible and the doctor tells you that the flu doesn't exist. That is exactly how it feels to be a Lyme patient.

I Skied Today!!!!

2008-02-05T20:11:00.000-08:00

I am in Lake Tahoe with my husband right now. We are here for a week. Since we arrived, we have spent most of the time sitting by the fire and relaxing. Well, I have been relaxing while my husband has been working. We came up here to have a change of scenery and to ski. Skiing represents health and hope for me. For the first 6 years of my illness, I could not even imagine skiing. Just thinking about putting on all of the gear was exhausting. That would have been all that I could have done during those years. In 2003, as my health improved, I skied in Zermatt, Switzerland. The act of skiing for a few days in a row was affirmation that I was claiming my life back. It thrilled me to be doing something athletic and fun again. Skiing feels like the opposite of sitting on the couch to me. Unfortunately, I relapsed in 2004 and I have not skied since until TODAY!!! We skied at Alpine Meadows in North Lake Tahoe. At first, I was so out of breath that I had to stop often. I had to stop about four times down each run to catch my breath and to let my leg muscles recover. I didn't care though. I just couldn't believe that I was on the slopes again. At one point, I just had to sit down on the slope and rest. By the end of the day, I completed 10 runs. I am exhausted and extremely out of shape but I did it. I skied! Now, I can barely move my legs so I can only imagine what I will feel like tomorrow. I know that I will spend tomorrow feeling crummy and resting on the couch but the success I had today will be worth giving up tomorrow for.

Port Surgery

2007-11-29T16:49:00.000-08:00

I survived surgery!!! I had surgery to insert my mediport on November 26. I was extremely nervous about being put out because my last experience with sedatives was a disaster. This surgery was a breeze-well, almost a breeze. I fainted during the IV insertion which is so embarrassing. I don't know what happened. Once in a while I have a vasovagal response and I faint. After I recovered from fainting, the rest of the day seemed easy. When I woke up from the anesthetic, I did not feel nauseated. I just felt sleepy. An hour after waking up, I was able to go home. It was a strange day because by dinner time I actually felt better than average. I had surgery that morning and yet I was sitting up at the table eating dinner with my husband and my parents. I actually answered my phone! I had the energy to do things that I cannot always get done on an average day. I wonder if my energy boost was caused by something in the anesthetic, by the hydrocortisone that I was given in my veins during the surgery, or by my FIRST dose of the IV antibiotic Rocephin. I pray that it was a direct result of the antibiotic and that I will have a lot more energy to look forward to as start down my journey on this strong medication. I will keep you posted!

Fighting for Treatment

2007-10-09T20:28:00.000-07:00

Today I was actually nervous before my appointment with one of my favorite doctors. I had not seen him for a year and a half. He tried to help me for years when I thought that I had Chronic Fatigue Syndrome. What I love about him is that he relies on scientific studies and yet he is also willing to try unconventional drugs and treatments just to see if they help me. If they do not cause harm, then he seems to have the attitude of why not try it. I was nervous today because I had a big question to ask him: Would he prescribe Rocephin, the IV antibiotic, for me to have infused at his medical clinic? I knew that he might not agree that I needed Rocephin. I also knew that the much bigger question would be whether or not he believed that I have Chronic Lyme Disease. He is a rare doctor who follows the infectious disease guidelines and yet thinks for himself. I did not know what direction the appointment would go in. We ended up having a good conversation about my health. He still believes that I truly have Chronic Fatigue Syndrome and not Lyme disease. It is so hard for us to have to persuade and convince the doctors of what is actually wrong with us. It is maddening. As I sat there and he told me that my positive serology for Lyme did not mean anything to him, I started to sweat. Why should I have to defend what is wrong with my body? I just want to get better. I don't care what the doctors call my disease but I want them to help me regain my life. I tried to remain calm and I also subtly shared with him my knowledge about why I did not agree with him. I am proud of myself for making a case for Chronic Lyme and yet focusing on my treatment from his perspective. I hope that he learned something from me. I will be happy if it makes him question what the infectious disease doctors claim. At the end of the appointment, he did agree to try and prescribe the antibiotic for me under the premise that it will help the infections that I have due to Chronic Fatigue Syndrome. Even though I know that I need the drug for Lyme disease, I will not argue over the rational behind prescribing it. I just know that I need it to get better. I felt like I should have been thrilled by his cooperativeness but I just felt numb. I know that even know he is trying to help me, there is a good chance that the insurance company will still refuse to pay for my treatment. They have denied me IV infusion therapy at home because they claim that it is not medically necessary for Lyme disease. I am desperately trying to find Rocephin at a price that is less than $1000 a week. My attempt to circumvent the insurance company's rules and try to get the clinic to give me the antibiotics as a procedure is my way of being creative. This disease causes us to have to fight on so many levels. We have to fight to prove that there is actually something wrong with us, then we have to fight the doctors who say that Chronic Lyme does not exist, and finally, we have to fight the insurance companies who refuse to pay for our treatment since supposedly our disease does not exist and therefore they have no obligation to pay for our treatment. Do you all see how insane this is? We, the debilitated patients, have to do all of the work to fight for our treatment. My appointment today really highlighted how we have to argue, persuade, and fight just to be given access to appropriate treatments.

Bow Ties and Surgeons

2007-09-05T23:57:00.000-07:00

Today I met with a surgeon to decide which kind catheter to insert into my body so that I will be able to receive IV antibiotics daily. The surgeon, a gentle man wearing a bow tie and crocks on his feet that proudly displayed his alma mater, carefully described my different options. As he talked about one of the options that would involve tubing sticking out from my shoulder, I felt uncomfortable and I just wanted him to stop talking about that option. I don't want a weird tube sticking out of my shoulder for a year or more. I would rather have to endure a needle stick every day than have tubing coming out of me. The mental discomfort of having weird tubing attached to my body far out weighs the physical pain of piercing my skin to access the line every day. Maybe I surprised him when I told him that I do not mind the needle but I have become accustomed to needles and pain ever since I started my bicillin shots. With about ten percent of the surgeons help and ninety percent of my fellow Lyme patients help, I choose a mediport. I will have to have surgery to have it installed into my chest but I believe that it will be the best option for me. I absolutely love to swim and I will be able to swim with the port. I feel confident in my decision to go with the port. Now that I have finally come this far along with my treatment decisions, I am ready to have the surgery. I am tired of talking about it and I am ready to get it over with and to move on to flooding my body with antibiotics.

2nd Opinion Lyme specialist

2007-01-24T22:53:00.000-08:00

Today I told my story. Today I recounted nine years of doctor's appointments, nine years of medical tests, and nine years of different diagnoses. I did it in extreme detail to the best of my ability. I started my health history timeline with the tick bite when I was five years old. My mom sat with me and the two of us tried to remember all of my childhood illnesses. We told this new lyme doctor my history. By telling him my history, I told him my disappointments. I did it with vernacular including words such as the Mayo Clinic, Spec scans, and adrenal insufficiency. Every word that I uttered was a medical word. Mostly, I talked about my symptoms and their possible causes. This new doctor was good. I do not usually state such simple ideas as "good" and bad" but I truly liked him and I trust the advice that he gave me as to how to proceed with my treatment for Babesiosis and Lyme disease. I know that I should have felt like the appointment was productive. I left feeling numb. Somehow the act of putting nine years of pain and suffering onto 3 pieces of paper is upsetting. Has it really been nine years since I collapsed? I have tried multiple therapies and I have sought the advice of multiple specialists. The cycle of hope and disappointment was apparent to me as I reiterated my story today. How do I know if this new doctor will give me hope as I try his treatment options only to disappoint me in a few months or a few years from now when his protocol fails? The truth is that I do not know. I still have hope. Hope keeps me going. I want to get better. I do not know exactly why I still have hope but I am thankful that I do. Maybe the experience of being human innately makes us want to be hopeful. If we don't have hope, we cannot keep living.

scan results uncovered emotional pain

2006-11-15T22:54:00.000-08:00

Today I found out the results of my SPEC scan of my brain that I had done at California Pacific Medical Center in San Francisco, California. I had a routine appointment with my local Lyme literate physician in which I learned about the results of the brain scan. The results of the scan concluded that I do have abnormal blood flow to certain parts of my brain that is consistent with what the radiologist sees in Lyme disease. I also have a low blood flow to another part of my brain that is not normally seen in Lyme disease. The lack of profusion, or blood flow, to certain parts of my brain implies that the Lyme infection is actually in my brain. I have encephalitis or inflammation of the brain. It is also spreading within my brain because it has moved to a new area. This information disturbs me. On the one hand, I expected my brain scan to be positive because of the memory and disorientation problems that I have been experiencing. On the other hand, I thought that the results might be negative because for most of these past 8 years I have not had that many symptoms of brain dysfunction. I had considered myself lucky until recently when I started driving to the wrong destinations. After I found out that I do have an abnormal scan of my brain, I felt sad. The realization hit me that this disease has actually impaired my brain. What does that really mean? Am I not as smart as I used to be? My identity is tied to my intelligence. People have praised me my whole life for my ability to achieve. Will I be able to reverse the problems with treatment? At the current moment, I can hardly remember how to drive to familiar places or what words to use when I am trying to talk. Just writing this blog entry is incredibly challenging for me. I can't think of the words to write. Words that make no sense pop into my head.
Somehow having scientific proof that the Lyme is in my brain makes the reality more real. I can no longer tell myself that my brain is probably fine. I now know that it is not fine. This illness cannot take away my mind. It has taken so much from my physical body, but I will fight with all my strength to restore my mind. Sometimes I actually doubt my thinking process. It is as if I don’t trust my own brain. I will endure whatever side effects of whatever powerful drug that I have to take to give myself a chance to reverse the damage that it has done to my brain. My doctor told me that eventually she will have to put me on an IV antibiotic because only IVs and intramuscular injections can cross into the brain to fight the infection. It is extremely painful to know that my mental capabilities are now limited by this infection. Without Lyme disease, I am so capable. If only I can rid my body of this awful disease, then the possibilities for me will be endless. I will be free.

Writing

2006-07-12T14:44:00.000-07:00

I have been seriously considering trying to make a living as a writer. I have a desire to write. It is a craft that I enjoy and that usually does not take too much energy for me. For the last year, I have been sharing with my friends my interest in writing. The problem has been that I am not sure what to write about. I started writing a book about my experience with Lyme disease. I worked on it for about 2 months but then I decided that I do not need to recount my numerous disappointing doctors’ appointments and my endless suffering as I searched for a diagnosis. Most people tell me that it must be therapeutic for me to write about my experiences. It is helpful but I am ready to move forward in my life as opposed to looking backward constantly. I am over it.

The whole idea of writing came about because I was thinking about what I can do. It is so frustrating to have an illness that limits my energy and therefore my choices. Ideally, I would like to finish college and then go on to get a PhD in Psychology. I barely have the energy to take one class at a time though. If I start on that plan, it will take me 15 years to reach my goal and in the meantime, I will not be contributing financially to my family. I am struggling with my idealistic way of seeing life. I do believe that it is possible to find a profession that I am passionate about and that I can make money at. I argue this point constantly. I have always believed that I would either study medicine or psychology. Then I would go on to be a successful doctor or psychologist. In either scenario, I would be a professional doing some skill that I liked, that I was good at, that brought money into my family, and that was respected. Now, I feel like I have to find what I can do as opposed to what I want to do. Helping other people takes a lot of energy. I can barely take care of myself right now. There is a disconnection between my personality and my body. My body is not cooperating with what my heart and mind want to do. The question that I have is, should I give up on these dreams of doing something ideal for me and settle for doing something, something that I can do. Today, I can write. I don't need any additional classes. Maybe it is like having a skill. Is writing my skill? I had a professor a few years ago tell me that he had no doubt that I would be a professional writer someday. Writing as a career had never occurred to me but I like the idea of it. When I write something that I like, I feel a rush of excitement. It immediately puts me in a good mood. Now, I have to figure out what genre of writing to pursue and how to actually get published.

Feeling Passionate about Lyme

2006-05-28T00:36:00.000-07:00

During this past week, I have made a lot of decisions. I want to pursue learning all about Lyme disease. I want to understand why the doctor's disagree about what the standard of treatment should be and why the CDC and the Infectious Disease societies underestimate the numbers of people who have the disease. Why do these organizations believe that four to six weeks of antibiotics will cure a patient of late stage Lyme? What are their motivations for steadfastly maintaining their positions? What kinds of politics are involved? I do not understand why Lyme disease has to be so controversial. People are suffering! Smart, educated people are rendered helpless and disabled by this disease. We could be contributing to society and now we can barely take care of ourselves!! Many of us cannot even work. Sometimes my big event of the day is taking a shower! I don't know what I would live on if I did not have the incredibly supportive and generous family that I do. It hurts me that I am 29 years old and I have not had a "real" job. I became ill when I was in college. I have not been able to finish college or to work for the last 8 years. I want to contribute to society and to contribute financially to my family. I cannot even begin to pay for my own healthcare costs. I feel passionately that the world needs to know more about Lyme disease. I am going to do my part by learning everything that I can. I hope that I will be able to make a difference in other people's lives through education all about the disease.

Opportunity to Work or to Relapse?

2006-04-30T23:41:00.000-07:00

One morning last week, I stood in my parent's kitchen and listened to a woman leave a message for my mother. She called for a referral for a wedding coordinator in our area who could plan her entire wedding. As I listened to her talk on the machine, I had an idea. What if I helped her plan her wedding? Could I really do that? I had just planned mine. I had been through all the steps from ordering the flowers to picking out the invitations. I knew that my idea was kind of crazy considering my limited energy. A sense of excitement pulsed through my body-I could actually earn money to contribute to our house that we are trying to make livable. The cost of living is so high in the Bay Area that it is hard to live on one salary and own a house that needs a lot of work. I really wanted to help out. I called the bride back and I explained to her that I was not a professional wedding planner, but that since I had recently planned my own wedding, that I could help her. She was thrilled. We connected on the phone and we set up an appointment to pick out her invitations the next day. It is hard to describe how I felt. Finally, I felt that I might have enough energy to earn some money. I spent 4 hours researching invitations for her. In the end, she and I decided to go see the woman who I ordered my invitations from at a local stationary store. I printed my research, put myself together, look a leap of faith that my energy would hold up for this project, and I went outside to meet Kathy. We successfully ordered her wedding invitations. I know that I was helpful. Kathy and I genuinely liked each other and she asked me to think about how much of her wedding I could plan and that she would come back the next day to talk about our plan and my payment. I loved the feeling that I was doing something to help my family and yet, I was also doing something that was just mine. I struggle with not being able to identify with a profession or as a student. My mind is so capable but my body holds me back. After returning from helping Kathy with her invitations, I was so exhausted I had to lie on the couch for a few hours and do nothing. Here I was-back in the same situation. It seems like I am always struggling between what my body is telling me and what my mind wants to do. My body told me that I had done too much. My hands were sweating and I could not get them to stop. I have learned that this symptom is a sign that I am pushing myself and that I better back off. My mind told me that I didn't want to back off. I was so excited to be contributing financially to my family. I cannot work and therefore I cannot even pay for my own medical care. Any little amount that I can earn will help us. I knew that we needed the money but I did not want to risk relapsing and spending months on the couch and in bed again. AHAH. I did not know what decision to make. My husband was so proud of me and of what I was trying to accomplish. I knew that my body probably couldn't hold up for the whole project and yet I wanted to take it all on so badly. I wanted to prove that I am competent at different tasks. For two days, I was so torn between saying no to the job and saying yes to 100% of the job. I know that those opposing options make no sense. For me, both decisions would have made sense. In the end, I woke up two days later feeling awful. I had a pounding headache and all I could do was lie on the couch. I had to call Kathy to cancel our appointment for later that day. I did not reach her but I left her a voicemail. Half an hour later, I listened to my voicemail. I was shocked! Kathy had called to tell me that she and her fiancé were calling off the wedding and she didn't need me after all. I felt so relieved!! The decision had been made for me. I was not going to do the job because the job ceased to exist. My heart goes out to Kathy. She must be going through a hard adjustment period right now but I was happy to get that message because it meant that I could take care of myself, like I knew that I needed to, and I would also not be disappointing my husband or myself by backing out of the job. Unfortunately, I think that trying to work was a good experience for me but it taught me that I am not ready to do part time work yet. And the struggle goes on. . .

Alicia's Story-Cancer

2006-04-19T14:29:00.000-07:00

This is a response that I wrote to a book that I read in January. I have decided to share my thoughts with you.

During the first three years that I was sick, I sometimes wished that I had cancer. No doctor could give me a definite answer as to what was wrong with me, as to what had stolen the life I knew from me. Each time I anticipated meeting a new doctor, usually a new specialist, my optimism and my hope would increase. One of these Stanford or Harvard educated doctors must be capable of solving my case. That thought is what all of my friends would tell me. I was blessed. I lived four miles from Stanford University Medical Center. Stanford would diagnose me and cure me. No one could fathom the idea that what was wrong with me was too difficult for the Stanford doctors to figure out or that Stanford did not specialize in ambiguous mutisystem illnesses.
I wished that I had cancer because then something would be forced to happen. Either I would fight the cancer, and survive or I would die. In that scenario, I never wanted to die. I always assumed that I would fight like hell and beat cancer. After the cancer would have been gone, I would have been able to go back to my life. I would have been cured. My energy would have returned. My parent’s friends would respect that I had something wrong with me. Everyone knows the name Caner. They know that it is serious. I know that some people questioned whether or not I was truly sick. To them I looked like a normal twenty something woman. Knowing that someone doubted my illness felt like a personal attack on my character. If they truly knew me, they would know how much I was suffering and how enthusiastic I am about life. There isn’t any part of me that sort of enjoys lying on the couch in front of the TV. I have had to adapt and accept that it is part of my life. Yes, there are TV shows that I now enjoy, but I would rather be out contributing to the community, working to help support my family, taking classes, talking to my friends, and most of all working on a project that will help others. I would also love to exercise again. People complain about having to get up early and go to the gym. I would give so much to be able to get up and swim a master’s workout in the morning. I miss the way it feels to physically push myself beyond my comfort zone.

I should talk more about why I mentioned the idea of cancer. I realize now that my desire to be diagnosed with cancer and then beat it was naïve and ridiculous. I didn’t know that much about the suffering and fear of death that cancer patients endure. I was just so frustrated with my own situation and my own suffering that I wanted it to have a name that would validate my experience in other people’s eyes. If I had cancer, then people would actually understand that I was sick.

After reading, Alicia’s Story, the story of a twenty-three year old woman battling metasatic cancer, I feel guilty for wishing that I had cancer. She is facing the very real possibility that she will die. I have a hard time understanding how some people can have diseases more serious than Lyme disease, like diabetes, and yet they have energy to live their lives and I am robbed of my energy and therefore I am robbed of large parts of my life. In eight years, I have not been able to finish college or to have a job. I recently married a wonderful man. I am scared that I will not have the energy to care for the baby that we want to have. I do find comfort in knowing that it is possible for me to live a long life. I might be physically miserable but I will still be here fighting. Hopefully, I will improve dramatically with antibiotic and antiparasitic treatment and I will no longer feel miserable. It angers me that my ability to help others and to help my family has been taken away from me. I refuse to believe that I will not improve. I have to get better. I will get better. I have too much to offer this world to not get better.
While reading Alicia’s book, I also realized that she and I have shared many of the same medical experiences even though she has cancer and I have Lyme disease. I could relate to the multiple MRI’s, PET scans, CT scans, and x-rays. She and I both had some of them with IVs in us for contrast die and some of them without. It is so confining inside those machines. I think that I developed claustrophobia since I started having to go into tiny spaces, such as the MRI machines. The hard part of the tests is that the experience of being inside the machine by ourselves produces the feeling of loneliness and anxiety. The aloneness comes from the fear of what the radiologist might find as he/she reads the results. It feels to me more like isolation than it does like anxiety because I am in there all alone, lying completely still, waiting. Will it be good news or terrible news? Will my life change as soon as they roll me out of this machine? Also, there is a strange element of how routinely the procedures are carried out by the medical staff. I understand that the technicians carry out their daily work duties but, for us, it is the quiet moment before our life might change.

I need to go rest now. I hope that some of you can relate to some of the emotions that I have experienced. I think that they are universal for people experiencing serious illnesses.

Smart Lyme Sufferers

2006-04-12T15:52:00.000-07:00

Last night I attended my regular Lyme disease support group. I am so impressed with how intelligent and proactive everyone is in the group. I have always been a seeker of information. I enjoy learning about how our bodies function and the disease process. For Christmas a few years ago, I actually asked for a medical school endocrinology textbook. A family friend gave it to me and I read it for hours. I majored in biology at Whitman College for two years so I learned enough about biology to help me read scholarly articles and understand some medical science. I always felt that I was one of the only patients in other support groups for different diseases that I was wrongly diagnosed with who wanted to know what was really going on in my body. Most people just wanted to be cured. Lyme patients seem to be different. They are all like me. They all desire to know what exactly is happening to their bodies and what they can do to get better. Our discussions are very stimulating. I feel fortunate to have found this wonderful group.

Herxing

2006-04-07T10:37:00.000-07:00

I was so excited to finally be feeling somewhat better! Now, I am back on Tindamax and Biaxin. I have been continually taking the Biaxin for two months now but I am taking Tindamax on a three week pulsing schedule. I started taking Tindamax again nine days ago. I am feeling the herxing effects. I am so much more fatigued than I was just ten days ago. It is hard for me to leave the house this week. My brain feels so foggy. I hope that my blog entries actually make sense. I woke up in the middle of the night last night feeling strange-I actually felt extremely hung over, and yet, I have not had any alcohol in weeks. I got up to eat because I figured that my blood sugar was low. After I got back into bed, I broke into an uncomfortable sweat. I felt so hot. I had to take all my pajamas off. At least I could see the humor in the situation. As the day as progressed, I have been alternating between freezing and overheating. I hope that these symptoms mean that the Babesia are dying and releasing their toxins in me. I just have to stay focused on the fact that this drug is helping me overall. I have to endure feeling worse before I can feel better.

Lyme More Prevelant

2006-03-29T16:33:00.000-08:00

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=)

2006-03-25T16:13:00.000-08:00

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

2006-03-05T22:54:00.000-08:00

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

2006-03-05T22:34:00.000-08:00

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

2006-02-13T14:57:00.000-08:00

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

2005-04-25T16:12:00.000-07:00

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

2005-04-16T17:57:00.000-07:00

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

2005-04-13T14:32:00.000-07:00

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

2005-04-08T14:39:00.000-07:00

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

2005-04-06T21:10:00.000-07:00

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

2005-04-03T10:57:00.000-07:00

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

2005-03-29T18:49:00.000-08:00

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

2005-03-28T14:58:00.000-08:00

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?

2005-03-26T17:20:00.000-08:00

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

2005-03-19T22:05:00.000-08:00

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

2005-03-15T21:48:00.000-08:00

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!