Loss of Brain Function with Hypoglycemia

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?

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

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

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

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

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

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.