Sharing Lyme disease lessons with others

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tick up close

This has been a year of reflection for me, and in counting my blessings, I am reminded gratitude grows if it is tended with sincere acknowledgment. This past summer and well into the fall, with all the factors right for an enormous proliferation of ticks, has found us sharing our Lyme disease knowledge gleaned over many years whether we wanted it or not.

Medical trails

We never set out to blaze medical trails, but as our son suffered, I frantically searched for answers that seemed impossible to find. This happened in the years prior to easy Internet access, and Ohio was believed to be free of tick-borne disease.

In the summer of 1998 and the years to follow, answers were few and far between. To those who have read my column for a number of years, you will recall my son, battling to reclaim his health that derailed when he was 11 years old, was finally diagnosed with Lyme Disease.

Specialists

It took trips to so many specialists over three nightmarish years of watching our son suffer, his health deteriorating in horrid ways, repeatedly being told ticks in Ohio did not carry this disease, finally ending up with a diagnosis after flying to a specialist in New Jersey.

Three agonizingly long years after his known tick bite, we were grateful beyond words to have a diagnosis and treatment. He responded so well to antibiotic I.V. treatment that it left very little doubt that we were on the right path. What we did not know then was it would remain a long, tough fight. He had gone so long without diagnosis or treatment that much damage had been done, and one round of antibiotics was not nearly enough.

Symptoms return

When the I.V. treatment ended, all of his symptoms began returning. Facts learned the hard way, we are more than willing to share with others who find themselves on this challenging path. Rarely does a month go by without requests from total strangers, seeking answers for a mysteriously sick family member.

What I find the most discouraging is that to this day there remains many misconceptions about this bacterial disease.

Mistaken diagnosis

Long ago, our young pediatrician examined our pale, sick son who was suffering extreme chest, stomach and joint pain and said, “I’m not sure I even believe in Lyme Disease,” and suggested daily jogging as the answer for this boy who could not even bend over to tie his own shoes.

This doctor mistakenly called it a “virus” rather than the bacterial disease clearly identified by science back in the early 1970s, though it has been in existence far back in time. One of the worst things about this disease is that the spirochete is able to set up shop in a healthy body, and with enough time left untreated, is able to burrow deep in to tissue, even able to bore in to bone, so that a tiny tube of blood drawn from the patient for testing is often unable to find bacteria in a simple test. And each afflicted person may exhibit different symptoms than the next.

Tested too soon

Our mistake as concerned parents was to request a Lyme test the moment we found the fully-engorged tick on our son. It was too soon for any reactive markers to show up in his blood. So, not only was it a wasted test, but it also caused us, mistakenly, to assume this meant our son was not infected. It still seems that the many doctors we took him to should have known better, but they did not.

So, all these years later, we are grateful to the nurse practitioner who took his chart home and studied it, insisting we take him to specialists in New Jersey. It was there that doctors finally diagnosed and began I.V. treatment of our son. We continued to battle on every front, including financial and educational, in a very long and complicated road back to marginal health.

Immunologist

It was not until an immunologist ran very specific tests which proved our son’s immune system was no longer producing antigens required for vital health that we finally had knowledge of the full scope of his battlefield. While living a successful life — he owns a lovely all-brick home with his wife of two years, a great job that suits him in every way — Cort must take weekly treatments. Ongoing treatment. This requires six needles placed in his belly, pumping gamma globulin

Ongoing treatment

This requires six needles placed in his belly, pumping gamma globulin in to his system, a process that takes about two hours from start to finish. This will be required, weekly, for the rest of his life, but he says it is worth it to feel as good as he does.

At age 29, he values good days of strength, clarity and energy beyond all measurement. He does his part by eating healthy, drinking plenty of water, and working out. So, as others find their way to us for support and information, we wish to spare those we can the grueling battle, the nightmare of not knowing, the search for the right doctor. There were some mighty dark days and sleepless nights as new and horrid symptoms overtook our vibrant son and we could do nothing but look on helplessly.

Helping others

Our son once said, “It makes it feel less senseless if I can help even one person.”

Just a few weeks ago, we helped yet another family find the right doctor for their two daughters, both ill after tick bites while enjoying a family camping trip. For that reason, this disease is sometimes called the affliction of the innocent.

Here’s hoping for happiness and health in the new year!

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Judith Sutherland, born and raised on an Ohio family dairy farm, now lives on a 70-acre farm not far from the area where her father’s family settled in the 1850s. Appreciating the tranquility of rural life, Sutherland enjoys sharing a view of her world through writing. Other interests include teaching, reading, training dogs and raising puppies. She and her husband have two children, a son and a daughter, in college.

4 COMMENTS

  1. Judith – thank you for sharing. I am also in Ohio. 22year old son sick for 5 years with Lyme. Can’t quite recover. Just started ldn now. Interested in the name of Ur immunologist.

  2. Both our sons 24 and 19 have Lyme …. 24 year old diagnosed by a clinic….in sept 2013. The 19 year old an engorged tick head embedded in his upper arm in 2010… Any info you can share would be greatly appreciated…. Both are quite incapacitated

    MANY THAnKS
    Patricia

  3. Judith,
    What is the proper way to test for lymes disease, my husband may have it. I know most drs have no clue. I thought I would email you to see what the most accurate test is and where he can get it done. We are in Ashtabula county, Ohio.

    Blessings and Thanks,
    Amanda

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