It could never happen to me, the picture of health and never in the hospital. At 6’2” and 190 Lbs., I had lots of exercise including hiking, biking, skiing, surfing, and traveling. My diet that was moderate with fish and meats balanced with fruits and vegetables. I ran my own company and lived in Palm Beach County Florida.
In the summer of 2006, my doctors at the VA (I’m a veteran) insisted on giving me statins to lower my cholesterol. Within 3 months my life went downhill seemingly overnight. I went from riding my bike 80 miles a week and walking five miles on the beach to a virtual coach potato. Unknown to me and to my VA doctors and private doctors, Lyme Disease had set in. Symptoms included sore muscles and joints and extreme fatigue. This wasn’t simply “sleepy” tired; this was bone tired, and at times it was even difficult to sit up straight. As if someone had drained most of my blood. It is both physical and mental fatigue.
It was not clear when I was infected. The bull’s eye never appeared. Very mild Lyme symptoms have been with me for many years. Could the statins have lowered my resistance to the bacteria and allowed them to take over? It is still a mystery.
To make things worse as far as a diagnosis, the symptoms would subside for 30 to 45 days then come back strong again. In 2007 I went to Maine for a week and hiked, went to fairs, and traveled the country side. Later that month I was a couch potato for over a month, not able to much more than cook, eat and rest.
Untreated for five years, the Lyme began to affect my nervous system. My speech, thought patterns, concentration, and memory were impacted. It caused joint pains, ringing in the ears, burning feet, and atrial fibrillation--two trips to the hospital. It became an extreme effort to go to the store, work on the computer, maintain friendships, or deal with any stress. A simple act of going to the store required resting in the store after the walk from the parking lot, resting on the cart during the shopping and resting at home for several hours after the trip. Working was limited as the mental disorientation made it difficult.
During times when my symptoms were strong, most of my time was spent lying down, not sleeping, but resting. This allowed the body to regain some of its strength and energy. During these periods the reality set in as to how much of my life I had lost. I became isolated from most of the world and lost contact with so many friends. They just didn’t understand how complex and comprehensive the illness is and how difficult it is to fight. It overtakes the whole of you. As of mid-2011, there are still many skeptics among family and friends and I try not to talk about my illness. It is a handicap that is not recognized as such. I wanted to get one of those handicap cards to hang from the mirror in my car but that would be admitting it’s permanent.
Physical and mental fatigue associated with muscle soreness and joint pain were the first symptoms. Confusion, lack of concentration, and the inability to deal with stress came later. Most of my family and friends thought it was a mental disorder. The fluctuating periods of mild symptoms and strong symptoms led family to believe that it was a bipolar problem. At the insistence of family and a family doctor, I went on anti-depressants for eight months with no impact. They either believed I’m nuts or just couldn’t accept it; either way they were of little comfort.
Dealing with the pain, mental and physical fatigue, and all the other symptoms was very difficult. The mental pain from the fatigue and the loss of your life’s activities has to be the hardest to deal with. Going through those issues alone while your whole world thinks you are insane is the most extreme situation a person can endure. If there was an easy way out, like a Dr. Kevorkian living next door, I may have considered that option.
The VA did lots of tests to determine the cause including a Lyme test which had a negative outcome. I requested a more precise Lyme test but the VA doctor in charge of infectious disease refused to go further. I fared no better with my private physicians. With few documented cases of Lyme in Florida, most doctors are not Lyme literate.
Finally, in November 2009 I met a person at a business seminar who had similar issues and he told me it may be Lyme. I'm from Florida and there are few Lyme literate doctors here and few people who know about it. I researched the disease and found a doctor in Maryland who has been treating me since January 2010 with antibiotics and supplements. The strategy is low dosage to begin and high dosage later. The symptoms got worse but now I have more good days than bad. Some of the bad days are the worst I ever had but at least there is a light at the end of the tunnel.
Jim Strahan, Florida