Author shares his story of the dangers of undiagnosed, untreated Lyme disease

By MARC MERULLO
Guest Columnist

Monday, March 19, 2012 —Many people spend a great deal of time outdoors. Parents take their children out for walks to the local park or around the neighborhood. A next door neighbor might be out cleaning the yard, the mailman delivering mail, the Federal Express truck making stops at various houses and businesses. Unfortunately, anyone who is outdoors doing anything could potentially become a Lyme disease victim, since the ticks that spread this can be anywhere.

MARC MERULLO

I discovered this for myself, since I have spent a part of everyday outdoors. From 10 years old through to the present, I was not only outdoors for entertainment purposes, but it was part of my job and part of my responsibilities around the house, since I maintained the yard for my parents by raking leaves, shoveling snow, or sweeping the driveway. And then I got bitten.

Likewise, whatever you are doing in your life, whether working at a job or business, being with your family, you will spend some time outdoors—from cutting the grass, shoveling the snow, and keeping up the yard to spending some time hiking. Wherever you are, you might be the potential victim of a tick and not even know it, because you might not even feel the bite. But soon you will start experiencing the first signs you have been infected by a tick with Lyme disease.

For example, one day you wake up with some minor symptoms, such as a sore neck or elbow. Maybe you have just a slight fever. But since everybody has something minor wrong with them from time to time right, you might think to yourself: “Am I going to waste time and go to the doctor about this sore elbow? No, it must be just wear and tear.” So you don’t go.

But even if you do decide to visit the doctor, he or she may find nothing seriously wrong, since everybody reacts to things differently. So maybe the doctor concludes that you are just experiencing wear and tear or age.

So you start thinking nothing is wrong and go about your business as usual. But as time moves on, you start to experience more symptoms, which could be many things ­ a sore back, legs, neck; maybe you have a fever or sore throat. But even if you now go to the doctor, he or she could still think these are symptoms of just about anything.

In my situation, I noticed a strange onset of symptoms beginning in 2005 that were gradual at first, so I ignored them. But then I began to experience more and more symptoms that led me to my first doctor’s visit in many years. At first, I had an inflamed throat that was so bad I could not swallow, which the doctor diagnosed as possible flu. So he gave me some medicine to treat it and it did go away.

However, throughout 2005 I noticed a lot more inflammation on various joints, so the doctor gave me X-rays and MRIs, and he diagnosed me with possible wear and tear, but nothing was broken. So while it’s a good idea to make an appointment for a physical when you first feel something is wrong, it can be good when the physical comes back indicating nothing is wrong, but instead the Lyme bug could be lurking within ready to strike when you least expect it.

But despite my all clear diagnosis, as symptoms continued, I became more and more concerned, though the doctor told me everything from “Don’t worry about it” to “It could be stress, because you’re working too much.” Then, I began going to health food stores looking for herbs which can treat various conditions. Some gave relief while others did nothing at all. After three more years of doctor visits and tests at some big hospitals in my area, they didn’t do me a lot of good. since every X-ray, blood test, and MRI all came out normal.

As a result, I still was not diagnosed with Lyme disease until 2008 as a result of a client who is a dentist. I had come into work one day with an inflamed leg that was so big I could not walk. So when I bossed arrived, I went to the hospital, where they diagnosed me with a condition of a cellulitis infection, gave me an antibiotic, and sent me on my way.

The problem was that this was not the correct diagnosis. After I phoned my place of employment to tell them about my hospital visit, the client and my boss instructed me to check for Lyme disease. Though my doctor was reluctant to do the test, telling me, “It is most likely not Lyme disease,” I insisted on them testing me and they did. Then, I returned home, and a few days later, on Monday, the doctor told me the test had come back positive.

That was only the beginning of my ordeal, because Lyme requires many months or years of treatment, and the doctor was only willing to give me three weeks because my insurance only covered that amount of treatment. Also, doctor told me it was acute Lyme disease, when in fact I had a chronic case, because it had been undiagnosed and therefore was untreated for several years.

As time went on, I did more and more research on the disease and concluded that many people are misdiagnosed that have Lyme disease, such as being diagnosed that they have ALS, lupus, fibromyalgia, chronic fatigue syndrome, possible attention deficit disorder, or other maladies. As a result of such misdiagnoses, people have been read their last rites, have lost jobs, had their families broken up, submitted disability claims, and have even declared bankruptcy.

In short, a person can experience everything going downhill, because a Lyme test was not performed in time to stop the progress of the disease at its initial acute stage. The only way to prevent this terrible fate is to know about and ask for a Lyme test, if you experience any strange symptoms. According to medical researchers, Lyme disease can resemble well over 100 different diseases and invade the central nervous system within a short time.

So how does this disease get started? It is a bacterial illness that comes from a deer tick, which are active 35 degrees Fahrenheit or higher and are in low lying areas. It is also important to seek out a doctor who knows about Lyme disease, if you believe you have Lyme and the infections that come along with it. A knowledgeable doctor should explain the difference between acute and chronic Lyme in your situation.

A big problem in diagnosing the disease is that most people never recall getting bitten by a tick and the blood work for Lyme may show a false negative. The two tests for Lyme are the Elisa and the Western blot. In addition Lyme can be diagnosed through a spinal tap and brain MRI. It is best to ask for these additional tests if the Elisa or Western blot should turn up negative. While these tests may be expensive, if you suspect you might have Lyme disease, it is best to take these tests to avoid what could happen if the disease becomes chronic. You want to catch it in the early stages, when you can easily treat it.

For further information or questions or where to find a Lyme literate doctor, please e-mail Marc Merullo at marcmerullo@gmail.com or marcmerullo@yahoo.com or call (617)308-4642.

Editor’s note: Marc Merullo is the author of a book  that will be published next year about his experience with Lyme disease, “Don’t Let the Lyme Bugs Bite.”