2006-02-09 / Letters to the Editor

Silent pandemic

People need to wake up and become more aware of the very serious nature of Lyme disease. Two of us in my family were diagnosed with Lyme two years ago and are still working to eradicate it. It was only by chance that it was diagnosed, as the doctors we see are totally clued in and ahead of most when it comes to Lyme diagnosis. I was like most when they suggested a Lyme titer test. I said, “Why Lyme? We live in town. We don’t spend time in the woods, and we have never seen the red circular rash from a tick bite.” One doctor referred to Jamestown as a “hotbed” for Lyme disease and given our symptoms, they were going to at least rule that one out. Lucky for us! I am not an expert in the study of Lyme disease but here is the scenario in laymen terms:

First of all, Lyme is not just a deer problem. Lyme ticks are also carried by mice, migrating birds, chipmunks, cats, dogs, lizards, rabbits, horses, and cows. Lyme knows no boundaries and has been found in almost every state in this country as well as many foreign countries. Lyme is a wicked form of bacteria, a spirochete, that morphs into other forms. It hides in the body, burrows into cells and silently attacks other organs and tissues. The bacteria, Borrelia burgdorferi, go into hiding and reappear and reproduce every four weeks or so, much like a parasite. This bacterial behavior cannot be treated with a mere 10 days of antibiotics, rather it is a case-by-case scenario and can take up to a year or more of antibiotic treatment. Lyme has been referred to as the “great imitator” as the symptoms can so easily be misdiagnosed as: juvenile arthritis, rheumatoid aArthritis, reactive arthritis, infectious arthritis, osteoarthritis, fibromyalgia, Raynaud’s syndrome, chronic fatigue syndrome, interstitial cystis, gastroesophageal reflux disease, Fifth disease, multiple sclerosis, scleroderma, lupus, early ALS, early Alzheimer’s disease, Crohn’s disease, Ménière’s syndrome, Sjogren’s syndrome, irritable bowel syndrome, colitis, prostatitis, psychiatric disorders (bipolar, depression, etc.), encephalitis, sleep disorders, thyroid disease and various other illnesses. From what I have learned over the last two years, not all Lyme tests are accurate and not all laboratories routinely test and report on all of the bands that tell the Lyme story. The result is also not a clear “yes” or “no.” The ELSA test is not reliable (only 65 percent sensitivity.) Our doctors were adamant that an IgG Western Blot test was done and analyzed by Stony Brook laboratories. The Western Blot is a more reliable test that looks at all the patient’s antibodies and basically tells a story. Certain bands that the body is reacting to as well as how many will give an indication of how long a patient has had the disease and how severe it is. It is also important to see a doctor that is able to properly translate the lab results.

After antibiotic treatment, another test should be run — the CD-57 test analyzed by LabCorp. This test is great because it looks at the CD-57, which is the natural killer T-cells that have been linked to fighting the Borrelia burgdorferi bacteria. A normal reading can be anywhere from 60 to 300, but anything lower than 60 means that the patient is still fighting the bacteria.

It is my personal opinion, that it should be standard procedure to have these blood tests run as part of a yearly check up. If Lyme disease is allowed to go undetected, not only can it be very costly, but more important, it can be fatal. I am not convinced that the source of many current illnesses including cancer and heart disease didn’t originate from Lyme disease gone undetected.

It is my hope to bring more awareness to the severity and magnitude of this problem and to hopefully help someone else get diagnosed early so they don’t have to go through what we have had to endure.

Strongly suggested reading:

“Coping with Lyme Disease: A practical Guide to Dealing with Diagnosis and Treatment” by Denise Lang, Kenneth Liegner, M.D.

K.B. Ferguson

Jamestown

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