Dear Dr. Archer,
This is a story of my suffering with Lyme Disease for nearly thirty years. My life started out well. I had a loving family, grew up in a great neighborhood in Washington, D.C. We had everything -- the best schools, cars and friends. Initially, I was making honor roll, except for that C in handwriting.
In tenth grade, something happened. I could no longer concentrate and fatigued easily. When I took the SAT, I scored over 1400, placing me in the top 5 or 10 percent of the country. I was in the fifteenth best public high school in the country.
A dozen of my classmates went to Harvard, and one is Cabinet Secretary for President Obama. That was my pinnacle. My grades crashed my last three years and ended with a GPA of 3.0.
I attended North Carolina State University, which was not terribly difficult at first, but I started having difficulties as time went on. I could not focus and fatigue issues became overwhelming.
After a few years, I went to Duke University Medical Center. A doctor I saw performed an examination and concluded I was "lazy and unmotivated." He prescribed two anti-depressants, making me feel dead inside. At this point, my academic career was in deep trouble, getting Cs and Ds. I barely graduated after seven years of abysmal performance.
I returned home after college and worked with the Federal Government. Concentration and fatigue were still major problems, impacting my performance. I was also experiencing severe pain and sweating. I ended not being able to keep up with my work and resigned rather than be fired. That has been my pattern of most jobs: work about a year and resign before being fired.
I saw another doctor, supposedly the best, and my hopes were high. He performed a physical, and in his report he suggested I begin working out since I was slightly overweight. This was odd, since I worked out four days a week and played basketball. I concluded he either didn't listen to me or care. He made no effort to help me, and suggested no avenues of treatment. I was heartbroken.
That became the dynamic for the next twenty years of my life. Bouncing from one entry-level sales job to another, lasting about a year, quitting before I'm fired. The pain was starting to escalate and become unbearable at times. Like millions of superheated triangles flowing through my blood stream, the joint pains were a problem, as well.
At one time all five of the disks in my lower back became fused. My chiropractor said it was the worse he had ever seen. I was accused of being negative or having a bad attitude when it was difficult to make it to work.
I saw 27 doctors, with the majority wanting to fill me with medications. None made any effort to find the problem. They didn't listen and didn't care. That was obvious in their behavior. Each was more incompetent than the last. Far and away the most incompetent were the endocrinologists, followed by the neurologist. The total of the incompetence cost me over $200,000 over almost 30 years, not to mention the 30 best years of my life.
After 25 years of seeing incompetent doctors, I decided to see a naturalpathic doctor. He determined that almost all of my hormone levels were on the low end of the range. They should have been in the upper third of the range for a healthy person.
This doctor treated me with bio-identical hormones to bring the levels to a more normal range. After two years, we had done it. All tests were at an acceptable level. Unfortunately, I did not feel better.
This went on two more years, and despite perfect levels, I felt like I was dying. My doctor could not understand, and then he suggested I get tested for Lyme Disease. I did, and tested very positive. My doctor said it was the worse he had ever seen.
I was stunned; my symptoms were textbook. How could all of the other doctors have missed this? I was relieved and angry. This was in December, 2009. I began an intensive course of antibiotics and was cured by March, 2010. I also lost 45 pounds, going from 220 pounds to 176 pounds.
The hardest part of dealing with this has been the psychological aspect. That speaks plenty, considering how painful this disease is. It is considered as painful as recovering from quadruple bypass heart surgery. I suffered continuously for 30 years. Because of this disease, I never really had a relationship with my now deceased father, my mother, sister, her children or with my extended family.
Everyone had high expectations for me, but I never came anywhere near meeting them. Doctors said I was lazy, and of course they believed them. It lead to continuous tension in our house and feelings of failure on my part. I could not understand why I was lagging in so many things.
I couldn't keep a job, had few friends and just wanted to be left alone in my room. It was devastating to me, and I worry about my mental health, as I am not currently working and feel more alone than ever. I worry about money and my future.
I found it ironic that the only doctor who made an effort cured me. The first 27 doctors were almost narcissistic in their conclusions that I was suffering from depression. They gave me drugs, none of which addressed the issue.
I found out there's a group of doctors called the Infectious Disease Society of America, (IDSA), who have declared that chronic Lyme Disease does not exist. This means insurance will not cover it and conventional doctors will not treat it. It is cruel that IDSA has gone to such lengths to suppress treatment.
It's as if this groups wants me to lay in bed as one organ after another fails until I drift off into a coma. It's so bad that the Connecticut Attorney General has sued them for anti-trust violations. They admitted it and then cheated on the agreement.
Since cured, I spend my days alone in my apartment, worrying about how to get a job after losing my last one due to illness. I am alone, afraid and angry. I did everything right, seeking help from allegedly the best doctors in America.
I honestly believe they want me to be sick so they can fill me with prescription drugs that don't work. If I could I would ask them why they think I have no worth and what gives them the right to take everything from me.
I have no hot water, very few clothes, and a car with no air conditioning. The car is the only thing I have worth over $100. I might never take another vacation, get married or have a family. The conventional doctors failed me, and I think it was to increase their own incomes.
I cannot express the anger I have at the IDSA and conventional doctors. Every day I have to tell myself not to be angry or afraid, as I am being consumed by these emotions. I can never get back what I lost. Please help me.
All I really want out of this is optimism, and I do not have much of that now. I have left so much out. I cannot adequately express the frustration and feelings of being cheated by every doctor I saw, except one.
I am so very sorry for the hardship you have endured during your lifetime. Lyme Disease is called the Great New Imitator, because it can have a hundred different symptoms, depending on the individual.
Most doctors are not trained to diagnose Lyme Disease and will not treat someone for that disease unless the person has a recollection of a tick bite. To further complicate matters, the test given at hospitals and commercial labs are quite unreliable.
Lyme is more or less a political disease that has many doctors disagreeing over treatment methods. The IDSA does not consider Lyme easy to get and considers the infection difficult to kill. However, they believe that if a person is still symptomatic after a short course of antibiotics, that the patient has what they call Post Lyme Syndrome. They refuse to call it Chronic Lyme Disease, and they will not treat it any further. These theories, of course, have been proven untrue to Lyme patients themselves.
The effects of suffering from this disease can strike entire families, much like in your case. When married, there is a higher incidence of divorce, family dysfunction and domestic violence. Tempers flare, as there is an abundance of anger. This, Sean, is exactly what you experienced and are still experiencing to this day.
For the benefit of yourself, you need to get beyond your anger. We both want you to get optimistic, but this will be a road you must travel.
So you can heal fully, the first thing you must do is to stop looking back. What has happened, happened. It's sad and terrible, yes, but there is nothing that can be done about that now. Look forward to what can be. You now have your health, so let's begin with TODAY.
Anger is an understandable reaction, but it's time to let go. No matter how bad we think we have it, someone has it worse. Focus on what you have NOW, not what you don't have. The optimist enjoys health and lifestyle benefits, and are happier overall.
You now have your health, so give thanks and express gratitude! You are now healthy and no matter how many years were lost you still have many years ahead, so start here and now to rebuild your life.
When something good happens in your life, stop and give yourself credit for making it happen. Think of your strengths, Sean. You have proven from your letter that you are loaded with strengths- first of all you are obviously a very good writer.
The key to optimism is to maximize your successes and minimize your failures. Remember that this disease was not diagnosed for 30 years, and that had nothing to do with you. As you said, you did everything right. It is what it is, and so move forward from here.
Remember that failures are learning experiences, and can be the sole factor towards your future successes. You're a winner, Sean, a survivor. I truly wish you a long, successful future.
Oh, and one more thing, Sean. There are many, many good women looking for good, strong men like yourself. I don't believe you will have anything to worry about there. Just keep that attitude positive, and get your sense of humor back. That will go a long, long way.