Health First, It worked!

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!

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)

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

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.