Sep 10, 2016

Lyme disease: Misunderstood and misdiagnosed

By: Bert Lehman

(Disclaimer: The article that follows is an actual account of what I went through battling Lyme disease. As I found out, it’s a disease that is often misdiagnosed, and certainly misunderstood. Controversy in the medical community surrounds the disease, everything from the testing for Lyme disease to the treatment of it. Some in the medical community may dispute my story, but it’s actually what I suffered and endured. What I went through, I wouldn’t wish on my worst enemy. I will mention no names of doctors or medical facilities in the article because the article isn’t intended to blame any person or facility. Rather, the article is intended to bring light to Lyme disease and help those who have a variety of symptoms that they can’t get an answer as to why they have those symptoms.)

July 27, 2008, is a day I will never forget.

I was driving to the stock car races in Shawano when I had a numbing sensation, but not completely numb, in my left arm. It concerned me a little but I tried to put it out of my mind. The numb feeling returned the next day and lasted longer. Then it was back the following day, lasting almost all day.

Because my father died of a heart attack at the age of 66, I became concerned and called the clinic to make an appointment to see a doctor. Because of my symptoms and my family history, I was told to go to the emergency room. I did, and everything checked out fine. I was told to set up a follow-up appointment with my family doctor.

The day after visiting the ER, the numb-type feeling remained in my left arm, but now also moved to my left leg. I had my follow-up appointment with a doctor the next day, played volleyball with my friends and then stayed after and had a couple beers. I woke up in the middle of the night freezing.

The following day I felt horrible and tired. Once again the numb-type feeling was in my left arm and leg, but now it was also in my right ankle and foot. But I had a four-day weekend racing trip planned — one of my favorite vacations I take each year. Things got progressively worse. By late afternoon on the first day of the trip I felt lightheaded and nauseous, as well as my legs feeling wobbly.

The next day I stayed in bed until 4:30 p.m., and when I did get up to walk around, my leg muscles felt weak, tight and wobbly. It also felt like my equilibrium was off. That’s the way I felt the rest of the trip. When I got home it was 78 degrees in my house, but I felt extremely cold and wrapped myself in a blanket.

By now, fatigue, extreme tiredness, a “fog feeling” and weak muscles were an everyday occurrence for me. Then on Aug. 5, I noticed my hands had become “shaky.” I knew this was a new symptom because I make custom die-cast race cars and my hands were always steady before.

With the tiredness, fatigue, weak muscles, tremors, and now headaches and joint discomfort, I convinced my doctor to treat me for Lyme disease, even though my test had come back negative. Over the next eight days there was no improvement, in fact it seemed like the symptoms got worse and lower back pain was added to the symptom list I was experiencing. On Aug. 14, I felt the best I had felt in two weeks, but still had the wide variety of symptoms.

After another doctor appointment on Aug. 20, my doctor told me I should have been feeling better if it was Lyme disease so he told me to stop taking the antibiotics. I still felt horrible and I had continued symptoms and new symptoms almost daily. The numb-type feelings were in different parts of my body, as well as tingling feelings in my fingers and toes. I started having shooting pains in the rib cage area, extreme lower back pain and I began experiencing ringing in my ears. At this point I couldn’t even walk a quarter of a mile without my leg muscles tightening up so bad I couldn’t continue. With no answers from my doctor and all my tests coming back normal, there was nothing more my doctor could do for me so he referred me to a physiatrist.

The physiatrist thought my brain wasn’t communicating properly with my muscles so he put me on a medication that was supposed to help with that. I’m not sure if the medication helped me or not. I still felt horrible, but I was able to function. Looking back, it may have just been me getting used to living with the pain and discomfort.  

I had a follow-up appointment with the physiatrist and he stated all my tests came back normal and there was nothing wrong with me. I tried to ask him questions as to why I was still feeling all these symptoms and he reiterated there was nothing wrong with me. He told me to do more walking.

Still feeling horrible every day, I started doing more walking. My leg muscles still didn’t handle it well, but I was able to walk every day. The only problem was, the more I walked, the worse my back hurt. It also caused me to feel discomfort in my calves and hips.

I had a slight reprieve in mid-October, as I felt the best I had since July of that year. It didn’t last long, though, as all the symptoms came back. I also began experiencing muscle twitches in my legs and my joints began to hurt more. I also began experiencing floaters in my eyes and my eyesight became a little blurry. During this whole time, I also had problems sleeping, as I would wake up several times during the night.

In late-October, I saw a neurologist and had a battery of tests done, and once again, all tests came back normal.

By November, I felt horrible every day with all of the above symptoms I have described. My day consisted of going to work and struggling to get through my work day — luckily I didn’t have a labor intensive job. I’d go home at night, do nothing, and was usually in bed by 9 p.m. Not exactly the type of days a normal 37-year-old should be experiencing. I also did a lot of research online during this whole ordeal.

I learned that Lyme disease is often misdiagnosed and the test results are often inaccurate. I also learned that there are disagreements in the medical community as to the proper way to treat Lyme disease. The more research I did, the more Lyme disease made sense as to what I was suffering from.

I also learned about “Lyme-literate” doctors, doctors who know a lot about Lyme disease and are willing to treat it long term. At the Lyme Disease Association, Inc. website (www.lymediseaseassociation.org), you can search for “Lyme-literate” doctors in your area.

Once again I convinced my doctor to treat me for Lyme disease. After starting the antibiotics I actually felt worse. Later I would find out that it is normal to feel worse before you feel better. After 30 days of antibiotics I wasn’t feeling great, but I was feeling better. Through my research, I learned that the longer Lyme disease goes untreated, the longer it needs to be treated and the longer it takes to get rid of it. When I asked my doctor to treat me longer, he told me the treatment for Lyme disease is 21 days of antibiotics and he wouldn’t treat me any longer for Lyme.

By this time everything I was dealing with was taking a toll on me emotionally, causing a lot of anxiety and depression. With no answers available and no more tests to do, my doctor diagnosed me with depression. I readily admit I had all the symptoms of depression, but I didn’t think that was the ultimate cause of everything. Despite that, I relented and went on an anti-depressant. I also started seeing a therapist at this time to help deal with the emotional toll I was going through.

The anti-depressant seemed to cause my anxiety to get worse so we tried a different anti-depressant. That one made me feel even worse. I stopped taking the anti-depressants.

I requested my doctor refer me to an infectious disease specialist, which he agreed to do. Two medical organizations with infectious disease departments refused to see me because I had tested negative for Lyme disease. It was at this point I sought a second opinion.

I found a “Lyme-literate” doctor and made an appointment with him for mid-December. During my visit he gave me a sheet of paper containing a Lyme disease symptom list. I checked probably around 75 percent of the symptoms on the list. This doctor immediately put me on antibiotics again. Over the next three months I saw this doctor and he treated me with antibiotics the whole time.

Months earlier I had set up an appointment with a rheumatologist. That appointment took place in February 2009, and he ordered more tests, which all came back normal. Ultimately his diagnosis was that there was nothing wrong with me, that it was all in my head.

The end of March 2009 I saw a different “Lyme-literate” doctor who I had read good reviews about. I actually made the appointment in October of 2008, but the soonest I could get in was March 2009. Once again I was given the Lyme disease symptom list and told to put a mark by the symptoms I had. Once again, I probably marked 75 percent of the symptoms.

Based on that, he immediately put me on triple antibiotic therapy. That’s right, I was taking three different antibiotics each day. The minimum treatment was also 90 days because he said the lifespan of the Lyme spirochetes is 90 days. I also had blood work sent to a lab in California, one of the most respected labs in the nation for testing for Lyme disease, and the test came back positive.

I would see this doctor every two months and each time I had to fill out the symptom sheet, and with each visit I was able to see the progress I was making. Eventually I was taken off one of the antibiotics and then another. But I stayed on the last antibiotic until July 2010. So in all, I was on oral antibiotics for a little over a year-and-a-half.

Looking back, I’m guessing I contracted Lyme disease in May or June of 2008. In May of that year, on two separate occasions, I walked in wooded areas and tall grass areas. Then in June I walked through a state park. I never found a Lyme bulls-eye rash on me, but according to Joseph J. Burrascano Jr., M.D., whose Diagnostic Hints and Treatment Guidelines for Lyme and Other Tick Borne Illnesses form a standard of care for many physicians in the field, only one-third to one-half of those infected with Lyme get the rash.

It was then in late-June 2008, several weeks before I began experiencing the numb-type feelings, that I started having headaches every day. It was also in early-July of that year that it felt like I had the flu, experiencing headaches, back ache, stiff neck and just feeling tired.

In June 2010, Burrascano Jr., M.D. spoke at St. Norbert College. I attended this event and was amazed by how many people were there who went through or were currently going through the same experience I went through. At this event, Burrascano Jr., M.D., asked the crowd if they knew what the leading cause of death is related to Lyme disease patients. When he said “suicide,” it didn’t shock me. I can’t say I ever seriously considered suicide, but there were times when I wished I wasn’t alive anymore because I didn’t want to deal with the Lyme disease symptoms anymore.

Two years later, after finally getting what I believe was proper treatment for Lyme disease and going through physical therapy, I finally had my life back. I was treated for Lyme disease one more time, but that was several years ago. Now, eight years later, I am living my life. I am glad that I didn’t accept my first diagnosis and kept searching for answers.