This is the story of Ed.
I started having balance issues in 2012. I complained to my PCP about it and he said that as we get older the muscles in our body that are used for balance don’t work as well as they used to. My balance steadily became worse and I began to fall. It was like someone was pulling my shoulders from behind me. Also, I would start backing up at work while trying to stand still. A coworker with a registered nurse in the family said that this was due to stress. One time I fell at home and thought that I had cracked a rib. It was then that my PCP referred me to a neurologist. I went to that doctor one time. I stopped going when he started talking about Parkinson’s Disease. Besides, I had convinced myself that my balance was getting better and that it was all due to stress. Sometime later my coworkers said that they could tell when it was me walking down the hallway because one of my feet dragged the floor a little. By then I had done enough research on Parkinson’s Disease to know that balance and gait disturbances were symptoms of the disease. I sought out a movement disorder neurologist. On my first appointment he diagnosed me with Parkinsonism. I had recently undergone epic levels of stress and asked him if this could all be stress related. He replied that stress can mess you up whether it is Parkinson’s or not. He wasn’t interested in hearing what stress levels I had. He did some neurological exams with me and I think I passed all of them. I am not sure because he never gave me any feedback. At the time, I had significant marital problems and moved in with my father. My father passed away while I was living with him and suddenly found myself homeless because my brother and I had decided to sell my father’s house. I figured this would be temporary and my wife and I would reconcile. The neurologist prescribed Azilect for Parkinson’s disease and said that it would take a full eight weeks for the medicine to take effect. Within the first week there was a noticeable improvement and I began to accept the idea that I had Parkinson’s Disease. Then around week six or seven my balance and gait became worse than it ever was before. I was literally bouncing off of walls. I stopped taking the medicine and at my week eight appointment with the neurologist I told him that I stopped taking the Azilect because it wasn’t working. He became belligerent and said, “Look, Parkinson’s disease is a degenerative disease and if you stop taking the medicine you will die much earlier.” It was clear to me that this doctor was a quack. Because I wasn’t fully convinced that I had PD, I sent him an email basically telling him that he was a quack and he wrote a letter to me banning me from the clinic where he works. I have several medals and such from the army but I am especially proud of that letter. My father was a registered nurse and one thing he taught me was that doctors are not mistake proof. I had done enough research on PD to know that this disease had one of the highest misdiagnosis rates.
So, I went to another neurologist at another clinic to get a second opinion. This doctor was much more experienced than the first doctor. The first doctor was probably in his early 40’s. He ran the same neurological exam on me that the first doctor did. The doctor said, “I don’t think you have the right symptoms for PD.” He made me walk up and down the hallway and said, “You’re marching!” He said that he had to put some sort of diagnosis on the record so he diagnosed me with an abnormal gait. I relentlessly researched my symptoms and saw on some website that patients with Lyme disease can have a neurogenic bladder. The website went on to say that a person with a Lyme neurogenic bladder can be fine while sitting still but any movement including standing up will trigger the need to go to the bathroom. This described exactly what I was experiencing. That was the very first time I suspected Lyme disease. I emailed my neurologist and he said that Lyme would be a concern if I was ever in the Northeastern part of the country. So I dropped it. The doctor also ordered an MRI of my neck after I complained about pain. I had read that if nerves are pinched in the neck area, this could cause neurogenic bladder as well as balance/gait problems. The MRI showed that I had “severe” arthritis in my neck. I asked the doctor if this could be the cause of my balance/gait problems and he said that it explains some of it but not all of it.
I was having a bad day one day at work after the visits to both neurologists. I was bouncing off of walls again but I convinced myself that it was all due to stress. A coworker asked if they found out what was causing my problems. I said no. Then the coworker, who knew I had served in the Gulf War in 1991, sent me an email. He had done a google search for Gulf War and Balance problems. One article caught my eye stating that veterans diagnosed with Gulf War Illness were far more likely to have significant balance problems. Up until then I thought Gulf War Illness was just a group of people desperate for attention. How wrong I was. I immediately researched how to file a claim with the Department of Veterans Affairs. I filed my Gulf War Illness claim in December 2014.
In the meantime I continued to research my symptoms including a new one. My eyes were burning like fire and tearing up. I also became sensitive to light. I came across a website that discussed Lyme Disease and symptoms. After seeing that website there was absolutely no doubt in my mind that I had Lyme Disease. There were so many symptoms that I was experiencing that I thought were completely unrelated such as: Eczema on my hands, (I was the only one in my family to ever get this.), night sweats, heart palpitations, alcohol intolerance, brain fog, muscle twitching, photosensitivity, severe muscle weakness, slurred speech, stuttering/stammering and of course balance and gait problems. There were many more symptoms that I had that are not included here for brevity. Also on this website I came across an article by Dr. John Bleiweiss titled “When to Suspect Lyme” that entire article could have been written about me and my symptoms. There were two things that really caught my eye in this article. In the very first paragraph he states that, “While deer ticks and LD have a well-known affiliation, other potential vectors can carry the spirochete that causes LD (Borrelia burgdorferi; Bb). These include, the lone star tick, fleas, the biting flies (e.g. green-headed fly) (and mosquitoes?). It was at that moment when I read those words that I knew that I had gotten the disease in Iraq back in 1991. One day while our company was preparing a corps sized ammunition supply point for demolition, I accidentally swallowed a large green fly. I knew it was green because it had been pestering me for quite a while. The very next day I had classic flu-like symptoms. I had achy joints, fever, chills etc. I was so sick that I barely got up from my cot the entire day. Then in the second to last paragraph Dr. Bleiweiss states, “Lyme (and Brucella) should be included in the differential diagnosis of Desert Storm Syndrome, with which LD shares many features.” This was the first time that I thought that Gulf War Illness could actually be Lyme disease.
I began searching Lyme disease for treatments, doctors, chronic cases and Gulf War Illness etc. I found through my research that Lyme disease can remain undetected for years and even decades. I also found out that STRESS can trigger the symptoms of Lyme disease. It became clear to me that I’ve had Lyme disease for many years and little stressful events along the way made my symptoms worse for example: I left the Army in 1999. Career changes are certainly stressful events. My fatigue became downright embarrassing. I was falling asleep during meetings at my new job. I never seemed to get a restful night’s sleep. My handwriting became worse but I chalked that up to nobody doing any handwriting anymore since the computer took over. Several years later when my mother passed away my fatigue became worse. It wasn’t until my father passed away and I basically became homeless that the flood gates were opened.
I contacted the Texas Lyme Disease Association and asked if it was possible to have Lyme disease for over 20 years and not know it. The response was yes it is. The TXLDA also referred me to the doctor that saved my life. I have been treated for Lyme Disease since June 2015 and it has been a long hard road with ups and downs but overall, I know that this doctor has saved my life.
If anybody would like more detail on my story including dealing with the VA, please contact me at firstname.lastname@example.org
P.S. The VA denied my claim for Gulf War Illness as well as my follow up claim for Lyme disease. They are both under appeal at this time.