I can’t really tell you my story without first starting with my sister’s story. We are identical twins, and we both have Lyme disease. My sister began having symptoms of Lyme disease just after she gave birth to her second child. This was the beginning of her nine year struggle to find a cause and treatment for her illness. Over the years it got progressively worse for her until she was spending the majority of her time in bed and in terrible pain. She had no idea what was wrong with her.
During this time she saw countless doctors who gave her no relief. No one knew what was wrong with her. She was told she was depressed, she was a stressed out mother, she needed anti-depressants, she needed psychiatric help. No one believed she was sick. She was ridiculed and humiliated by the medical community. Even her family could not truly understand, including me. Although I was sensitive to her pain and had no doubt she was ill, I could not have possibly really understood the extent of her pain at that time because I was not yet ill.
After nine years of illness, going from doctor to doctor, and endless hours of internet research my sister made an appointment with a new doctor; a rheumatologist. But this time things went a little differently from all the previous doctor’s visits. Unfortunately, this rheumatologist could not help her either, but he was the first doctor that really and honestly tried. He listened to her and believed her. He actually tested her for everything he could think of, but came up with nothing. He finally told her he thought maybe she had Chronic Fatigue Syndrome. He then referred her to the doctor that probably saved my sister’s life. This new doctor specialized in Chronic Fatigue Syndrome and Fibromyalgia. Because the symptoms for Chronic Fatigue Syndrome and Lyme disease can be nearly identical, this new doctor naturally ended up with a lot of patients who actually had Lyme disease. This new doctor listened to my sister. She tested my sister for numerous immune disorders, including Lyme disease. Her Lyme disease test (Lab Corp’s Western Blot) came back negative, but this doctor recognized my sister’s symptoms. These were symptoms she had seen many times before. This new doctor prescribed antibiotics to treat the Chronic Fatigue Syndrome, as well as ATP and Glutathione injections to boost her immune system. She very slowly began to get better. Today she still struggles with the symptoms of Lyme disease due to being misdiagnosed for so many years, but she is in a better place than where she started.
My story began about 10 years ago when I had a major surgery. I believe this is when I first started having the symptoms of Lyme disease. They say that Lyme disease can be dormant in your body for many years, and then a physical or emotionally traumatic event can activate the disease. This is what I think happened to me due to the surgery. My symptoms progressed very gradually. If fact, it was so gradual that I did not really recognize or pay attention to it for the first several years. I thought I was just getting older and my job was too physical. I have had terrible and sometimes debilitating allergies my whole life and blamed many of my symptoms on that. I made excuses. Looking back now, I eventually ended up in very severe pain most of the time. I had gone to doctors at times over those years complaining of various symptoms. I even went to my allergist with severe shortness of breath which I attributed to my allergies. He told me it was anxiety and I should go see a psychiatrist. I now know that this was a symptom of a common co-infection with Lyme disease (I was treated for this co-infection years later and this symptom completely resolved). The tipping point was when I started having difficulty walking through the grocery store long enough to get everything I needed. I would then go home and literally curl up in a ball in excruciating pain. By this time I could no longer deny the very obvious signs of my illness. I knew something was seriously wrong. I had never really spoken to my family about my pain before. I just chose to ignore it. But once the pain got to a point that I could no longer ignore, I finally told my sister about all my symptoms. She immediately recognized my symptoms as being identical to the symptoms she was experiencing with her Chronic Fatigue Syndrome, which had yet to be diagnosed definitively as Lyme disease. She urged me to make an appointment with her doctor who had by now been treating my sister with antibiotics for about one year.
To be honest, I did not want to go see her doctor at first. It just could not be possible that I had the same illness she had. I had also seen everything she had been through over the past 10 years, so I guess I did not want to admit to myself that I might be heading down that same road. I finally made an appointment and I was tested for everything under the sun, including Lyme disease. My Lab Corp Western Blot came back positive for active Lyme disease.
My Lyme disease diagnosis was a shock to me, but it was also a revelation for my sister. She had suspected over the years that she could have Lyme disease and now there was no doubt. The test for Lyme disease regularly comes back with false negatives, so many people are missed when diagnosed using only this testing method. If you do not have a doctor who really understands this complicated disease, they will not look at the full clinical picture to make a diagnosis. My sister was later tested through a different lab and she was positive. My sister and I lived in East Texas as children. We spent our days playing in wooded tick infested areas and we were always together. We were also both regularly and continually bitten by ticks during this time in our childhood. We both now believe we were infected as children.
I have been treated for Lyme disease since 2010 but I am still struggling with the symptoms of this disease. I have done a lot of research on my own because there are very few Lyme specialists in my area of the country. I have tried different combinations of antibiotics and also received antibiotics via I.V. for eight months. This has improved many of my symptoms, but I am still not well. I quit treatment for a couple of years and many of my symptoms began to slowly return. I am now on treatment again and must travel out of state to see a Lyme specialist.
Oddly enough, I feel very fortunate. If it were not for my sister’s nine year search for a cause to her illness, I would probably still not have a diagnosis of Lyme disease. My sister recognized my symptoms and immediately sent me to the most Lyme literate doctor in our city. If not for that, I don’t know where I would be. Knowing what I know now, it is very probable that I would have never even been tested for Lyme disease if not for this doctor. I have learned a lot about Lyme disease over the years. I have learned that the IDSA’s guidelines for the treatment of Lyme disease are seriously flawed. Because the CDC adheres to these guidelines, insurance companies regularly deny coverage to treat this disease. This has also prevented physicians from getting education that is so desperately needed, especially in Texas. I have learned that we need better testing. But until we have an accurate test, physicians need to be educated on how to diagnose Lyme disease through clinical observation and detailed patient histories, as well as all available diagnostic testing. I have learned that Lyme literate doctors in Texas are afraid to treat patients in Texas for fear of losing their license to practice. My greatest hope is that we can educate the public, doctors, and researchers regarding the prevalence of Lyme disease throughout the country. It is endemic everywhere, not just on the East Coast. My sister and I contracted Lyme disease in Texas and I have met many other patients who were also undoubtedly infected in our state.