Letter to the Editor: Concerns About Lyme Disease Awareness by Jennifer Achterberg

With May being Lyme Disease Awareness Month, I wanted to shed light on a topic of which many may not be aware. My concern is not the contraction of the disease itself (we live in Wisconsin, we know our risk is high) but on the level of support that is provided for those who do contract the disease. When it comes to Lyme disease, there is a lack of understanding not just from the public, but from medical professionals as well.

It is a harsh accusation to say that those who work in health care are ignorant about Lyme disease. However, through my journey over the last couple of months, I have found this to be true. I was finally, diagnosed with Lyme disease this past January after months of various doctor visits. My struggle with the health care system started in October when I made my first doctor’s appointment for vague symptoms including fatigue, abdominal weight gain, constipation and some minor muscle pain.

After a variety of tests, there was no definitive answer as to what was the problem. Well, the symptoms persisted and they eventually brought some friends with them. These symptoms included irregular heartbeats, pins and needle sensations, as well as numbness throughout my body, brain fog, mood swings, and a feeling of restricted breathing (air hunger). At this point, I was scared to death. I had never experienced anything on this level before, and I felt as if any day could be my last.

I continued to put my trust in doctors, but because I was getting no results from my current doctor, I decided to switch providers. I figured a second opinion could not hurt. It was with this provider that I was finally tested for Lyme disease. However, the journey would not stop there because the test results were “negative”. (It turns out the blood tests for Lyme are horribly inaccurate.) Through this provider I was sent to several specialists including a cardiologist, a rheumatologist and a neurologist. All would come back empty handed. I was tested for everything under the sun; I could not believe that in the year 2016, science could not explain what was happening to me.

This was the all-time low in my life. I went from running eight miles a day to barely being able to walk at times. I was feeling worse and worse and no one could tell me why. I told my general physician, who had sent me to the specialists, that I was not feeling better and none of his people had provided me with any information. I told him I wanted to be recommended to Mayo Clinic in Rochester, Minnesota. I received a call from his nurse saying that he had no further direction for me to go so he was going to recommend me. I was very excited. I thought this is it, I am going to get a diagnosis and I will be feeling better soon. I was wrong.

I spent four days in Rochester. I was retested for a variety of ailments in addition to being tested for new ones. One of the many tests was for Lyme, but it was only done because I had asked to be retested. I had been online constantly, trying to self-diagnose. I had read that many people suffered with Lyme even after countless blood tests “proved” that they didn’t have Lyme. At one point, I asked one of my Mayo doctors if all my symptoms could be related to Lyme. His response was: “As you probably already know we don’t believe in chronic Lyme.” A few days later, I drove back to Wisconsin without a diagnosis.

I was determined to get my health back, so I continued to seek out sources who might help me. My journey to healing began when I heard about a LLMD (Lyme Literate Medical Doctor). He asked me why I was in his office. In a desperate voice, I said, “You are my last hope. I have been tested for everything.” After listening to my array of symptoms, he said he had no doubt I had Lyme disease.

I have been on a variety of treatments since my Lyme diagnosis and I am on the slow path to recovery. I am not 100% myself yet, but I am doing much better. Still, I am deeply disturbed by this journey. I cannot believe that it took this long and this much of my own research, to diagnose a disease that is so common in the area that I live. Yet, I am one of the lucky ones; many Lyme sufferers are either misdiagnosed or undiagnosed for years! The number of people suffering with this disease is astounding. The CDC recognizes 300,000 diagnosed in the US every year. Wisconsin, Minnesota, and ten states along the eastern border make up the vast majority of that number.  I encourage people to be their own advocate when it comes to their health. If your health deteriorates with no explanation, do not take a lack of diagnosis for an answer. I am not saying that doctors do not want to help their patients, but there is a lack of knowledge of this disease. If you feel you have Lyme do not passively wait for a diagnosis; seek out a LLMD.

In loving memory of Dr. John Hoffmann.