LETTER: How Lyme Affected One Young Resident

Editor's Note: The following letter is from a Basking Ridge mother who said she has a cause — "to spread awareness about Lyme disease which affects so many people here in our area, especially our town." She submitted this piece to Patch to notify readers that during this Sunday's Super Bowl game there will be a Jumbotron exhibit to educate the public about the signs and symptoms of Lyme, which she said is often misunderstood and misdiagnosed.

To the Editor:

What started one fall as flu-like symptoms ended up being the beginning of a long journey through a medical nightmare. My child, an avid athlete who could run relentlessly and lived for sports was confronted with perhaps the biggest challenge of his life — convincing others that he was very sick and needed help.  It would eventually rob him of energy, enthusiasm and confidence as we all fought to remain positive amidst all the many disappointments that were yet to come. 

I felt compelled to write this article for all those who continue to suffer or know someone who is suffering from unexplained illnesses, particularly Lyme disease, and want to believe there is light at the end of the tunnel. If this story is able to educate the public to pursue decisions regarding recovery, create awareness to prompt vigilance in the future, get people to trust their instincts and that of their loved ones and finally, provide hope for a cure, then this will have been of value.

At 13 years old, after struggling with flu-like symptoms and sore throats for several months the journey began. My son consistently suffered through a multitude of symptoms which randomly displayed themselves over three years and included repeated sore throats, swollen glands, fevers, joint and muscle pains, confusion, difficulty with concentration, mood swings, irritability, anxiety, tremors, headaches, motion sickness, lightheadedness, fatigue, loss of stamina, insomnia, sweats, heartburn, stomach pain, and many others too numerous to mention. 

These symptoms prompted many highs and lows which resulted in many absences from school and the inability at times to remain actively engaged in sports.  As our search for a cure began, my son endured multiple tests of every nature which always resulted in the same conclusion — that there was no scientific evidence or indication that he had any identified illness known to man.  By the time we finally reached a diagnosis, we had visited over fifteen doctors in every medical discipline imaginable. Still, the conclusion was always that he was no different from any other teenage boy and was most likely suffering from chronic fatigue, irritable bowel syndrome or most likely depression.

The question always remained — why would a boy who actively engages in life and enjoys being with friends not want to go to school and take part in sports and social events? The answer was finally found — Lyme disease was, and is, the culprit. Lyme disease is one of the most misunderstood and controversial illnesses of our time. Difficult to test accurately, tens of thousands of people go undiagnosed—or misdiagnosed. Many of those untreated will suffer chronic debilitating illness. Some unknowingly will pass the disease on to their unborn children.Many will lose their livelihoods, and still others, their lives.

Lyme disease, which is epidemic in this area, is difficult if not impossible to detect at times since the Lyme spirochetes are very good at altering their structure from moment to moment in order to remain elusive. Those who visually display the tell tale bulls-eye rash are fortunate to gain a prompt diagnosis, but for most the Lyme quickly becomes virtually undetectable as it wreaks havoc within its chosen host. Some weeks and months may be better than others which has everyone questioning the validity of any diagnosis. 

Depending upon scientific evidence only delays the chance of treating the disease early on, since in the case of Lyme clear indicators just aren’t going to be there. Therefore a positive diagnosis many times is based on specialty tests which standard insurance companies rarely endorse as well as clinical observation. Seeking a path to recovery, patients experience frustration with the constant expectation that someone, somewhere can put an end to their suffering and misery. Imagine knowing you are sick for such a long time and in this hi-tech world no one can help you — much less believe you. 

My son’s Lyme peaked several years into our journey when after a successful soccer season with his high school team, he declined to try out for basketball stating that his body could not handle it because he still felt sick. On Christmas Day, he woke up shaking and panicked — begging to be taken to the hospital where he would be safe and someone could finally find out what was wrong with him.  After further specialized blood tests specifically for Lyme, a conclusive diagnosis by a Lyme specialist was finally made. Prior to this, he had been diagnosed twice and was given oral antibiotics. Now he was placed on intravenous treatment for two months during which time he completed his schooling at home where he was able to keep pace with his class.

Several weeks into the treatment, he began to believe that he was actually getting better and after the eight weeks of treatment, for the first time in years, he finally felt hopeful that he would soon get his life back. The ongoing support of friends and family during these difficult years kept my son’s spirit alive even when his health continued to fail him.

In hindsight, had I been more educated and aware, the indicators were all right there from the beginning: Misinterpreted high Lyme counts, relapses after several rounds of antibiotics and the myriad of continued clinical symptoms.  Looking back, I am amazed at how many days my son actually got up and went to school and continued to compete all this time with Lyme invading his body.  Perhaps the hardest lesson, which we learned early on, is that with Lyme you are basically on your own as a parent and child team, left to find answers to your many questions even when others doubt you.

After being assaulted by antibiotics and with his immune system depleted my son is experiencing renewed health. He has learned that proper nutrition and lifestyle changes will ward off future invaders and hopefully prevent any potential relapse. Fast food, soda, ice cream and other junk food is a thing of the past and has been replaced with healthier alternatives. He now understands that maintaining a healthy immune system is critical to overcoming future intruders. Regular testing and careful vigilance ensure any relapse is quickly detected and treated. 

For my family, this long medical nightmare ended only when together we uncovered every obstacle and were able to solve the mystery. We made a promise together, early on, that no matter how long it took and at any cost we would find a cure for my son. You must always be an advocate for your child and believe them when they say they are ill and all indications point to chronic illness. My motto is to “go with your gut,” since you know your child better than anyone else. Yes, it may be true that all teenagers get tired at times but prolonged complex symptoms must be monitored and addressed. During our many doctor’s visits we were saddened by the crippling effect Lyme had on many of the patients we encountered. Many were in wheelchairs and too sick to even sit up. Still others had been diagnosed with other auto-immune conditions. It was amazing to see the positive results after proper treatment and witness people getting their lives back and the miracle of recovery.

As we were cleaning out backpacks at the end of the school year I found a paper that my son wrote for school and wanted to share a quote. “Every time I felt like giving up hope I always looked on the bright side of things. On the occasional times that I felt partially good I always lived my life to the fullest. Even though I knew I would go back to my haven on the coach or my bed my spirits remained high.”  I consider us one of the lucky families who have a reason to hope and can share this hope with others.

 Education and awareness are the keys to eradication. Over 35,000 cases of Lyme have already been reported in New Jersey and this statistic will grow to include another 3000-plus cases or more per year. These only include documented and confirmed cases, not the growing population of undiagnosed cases.Take the time to educate yourselves and others you know on the symptoms of Lyme. As Lyme reaches epidemic proportions someone you know and love may be affected somewhere along the way. 

Please help spread knowledge and hope to others by reviewing and sharing the links below.

The Lyme Disease Association (LDA) is an organization with national focus which is dedicated to Lyme disease education, prevention, and raising research dollars. If you fear you or a loved one has Lyme disease visit the Lyme Disease Association website at www.lymediseaseassociation.org where you can view a checklist of symptoms to help in identifying the underlying factors affecting your health.  This will assist physicians in attempting to provide a diagnosis.

To obtain current information on Lyme disease visit the website for The Lyme and Tick-borne Diseases Research Center at Columbia University Medical Center at www.columbia-lyme.org. This center was recently established as the first academic research center in the country to focus on chronic Lyme disease.  Recognizing that a growing number of patients experience ongoing Lyme symptoms and diagnostic tests often do not provide definitive information regarding the presence or absence of infection, the mission of this center has a particular focus on identifying better diagnostic assays, better treatments, and a better understanding of the persistence of Lyme symptoms.

UNDER OUR SKIN is a powerful and often terrifying look not only at the science of Lyme, but also the personal stories of those whose lives have been affected and nearly destroyed.  It highlights patients who once led active lives but are now debilitated by Lyme and uncovers a hidden world that will astound viewers.   Portions of Under Our Skin can be viewed on You Tube at http://www.youtube.com/user/openeyepictures.

Marian Janes,

Basking Ridge