Middlesex County, MA
Current health: “60-75% improved, currently on antibiotics, herbals, and chelating toxic metals”
“With chronic Lyme disease, you will find out what you are made of….” –Alan B.
“I woke up in Westford, MA in August of 2008 and it felt like someone had broken into the house in the middle of the night and beat me with a baseball bat. All the previous mornings of my 43 years were near perfect. But on this day, I had a stinging sensation throughout my spine and couldn’t move. I knew something was drastically wrong.
“I had severe joint pain and stiffness in my elbows, neck, knees, and ankles. My wrists felt like they had been snapped in two. My vision was blurry. I had no mental clarity; my brain was fogged up like I had two cases of beer the night before. I was absolutely wiped out with fatigue. I had a slight fever. Fortunately, my wife had not left for work yet for, if she had, I would have been home alone with no ability to move and the paralysis could have established itself. After I was helped out of bed and onto my feet, I was hunched over like a 95-year-old man and could barely walk. Slowly, step-by-step, I got myself to my car and drove to the emergency room. I had a hard time breathing. There was a slight haze to everything I saw. I remember the senior citizens waiting to get their blood drawn and the look on their faces when they saw me. The doctor drew 17 vials of blood and sent me home. He called a couple days after and — much to my chagrin — told me that everything ‘looked good.’ After asking what the doctor thought I had, he said it was likely a ‘viral-type phenomenon’ (this diagnosis coming from the chief of Rheumatology at a well-known Boston area hospital). Those 17 vials of blood were the first of many drawn in the ensuing years.
“I worked with someone whose wife had Lyme disease back in the early 1990s and was told that she was ‘miserable’ and that her life was basically over. I always figured if I got bit I would see the red bullseye and get myself to a doctor. In my case, there was never a bullseye or any other indication of a tick bite. In fact, I had NEVER taken a tick off of my body in my life. I have to assume that I was exposed/bitten working in my yard — I used to handle firewood and clear brush from a parcel of land across the street from our house. But then again, it could have happened almost anywhere.
“That initial onset of symptoms seemed to go away in two-three weeks but I knew that something was still wrong. I didn’t feel normal, but I couldn’t put my finger on it. 2009 came and went and I could tell even more so that something was wrong because my balance was off, my ears were ringing, and I had a really hard time getting out of bed each morning. My arthritis was increasingly bad … to the point where I subscribed to Arthritis Today magazine. My stomach was like a volcano and I had pains in my abdomen. My brain function was getting worse. I was shivering any time the temperature was less than 60 degrees. I saw a handful of doctors in the ‘regular’ medical community for all of these problems. None of them could find anything inherently wrong, but amazingly many of them prescribed medications for unsubstantiated reasons. It became very time consuming and frustrating, and all the while I was getting sicker and sicker.
“In 2010 and 2011, I was having a hard time reading — the words would all come off the page at me. I couldn’t sleep. I couldn’t remember things and I got lost going to places that I had been to many times before. By the time 2013 rolled around, I had seen over 20 doctors and holistic medical professionals all over New England and had hundreds of vials of blood drawn. By the end of 2013, when I finally got a diagnosis of Lyme disease, I had over $50,000 of out-of-pocket, non-reimbursable money spent on Lyme. As I write this in 2016, that number is now close to $75,000. Many of the professionals I saw were very nice and seasoned at their specialty … but that’s it. To this day, I am amazed at the disconnect between chronic Lyme disease and the mainstream medical community. NONE of the medical people I saw could advise me on where to turn. I found that deplorable, disheartening and unacceptable.
“Chronic Lyme has affected every part of my life. It caused a perfectly happy marriage to fail because my wife was tired of me being ‘sick all the time.’ It impeded promotions and job opportunities at work. For me, the biggest part of my illness has always been my brain function or lack thereof. The days of the week all seem to be the same, the seasons all seem to be the same. I have to constantly remind myself of what year it is. I never could tell what time it was.
“It is unlikely that I will ever walk in the woods again. My friends, family and co-workers don’t understand why I can’t do certain things – but they are learning. Some people have suggested ‘you’ll have good days and bad days,’ meaning ‘like any other illness.’ The last thing I want to do is compare illnesses. Because chronic Lyme is essentially a moving target, you have some of its problems all the time. They might temporarily subside – but they always return. Sometimes they are severe when they come back. Each day seems to be different and it is hard to believe there was a time in my life when I didn’t have this condition — a time when I could eat whatever I wanted, drink whatever I wanted, do whatever I wanted and when I was almost always assured a good night’s sleep. People laugh when I tell them this – but the one thing you can do fairly well with chronic Lyme is watch TV.
“Fortunately, I interfaced with someone who had been successfully treated by a well-known infectious disease specialist on Cape Cod. So after I got diagnosed, I went to see him. I believe my recovery gained the most by the treatment that this doctor gave me. I am still being treated and I am hopeful (like everyone else affected) that there will be a breakthrough medicine that will bail us all out.
“I have learned many things about myself and this disease as it has manifested. I no longer sweat the small stuff. I think about the thousands of other people who are living this nightmare. We are all in the same boat. While my story may seem unfortunate and bad to me, I know that are many people out there that have had it worse than I have. Some are paralyzed and some have died because of Lyme. It seems to me when I talk about Lyme in virtually any setting, there is always someone who knows someone or has a relative or co-worker who is battling this illness. My heart breaks every time I hear of a kid that has Lyme.
“The real glory is being knocked to your knees and then coming back. I believe at some point, we will all be liberated from this nightmare. “