My Boys' Lyme Stories

In their younger years, rural, wooded Scotland, CT

Peter, Joel (with Ginger), Tim and Ben

I hardly know where to begin, my boys have had Lyme disease so many times!

JOEL
When Joel was 17, he had acute Lyme disease that began as a small bull's eye rash on one of his upper thighs. We sought treatment right away and he had an apparent total recovery.

A little over a year later, after months of mild complaints of being tired and slightly achy, Joel was re-evaluated for Lyme disease. His liver enzymes were abnormal but he was negative for hepatitis. Was all this from Lyme disease? I don't think we can be sure, but he's well now and his liver enzymes returned to normal following re-treatment for Lyme disease. He stopped complaining about the aches, though his neck seems prone to cracking at times.

Joel spends a lot of time outdoors and checks himself regularly for ticks! He uses insect repellent too. He's in great health and as active as ever.

BEN
Ben started complaining of an achy shoulder and jaw about a year after I was diagnosed with Lyme disease. This was not linked to a specific tick bite and no rash was found although he had had tick bites in the past.

He also complained of some cognitive difficulties such as word finding difficulty, reading, and trouble with math. The Western blot test for Lyme revealed that he had had Lyme disease for some time. He was begun on aggressive antibiotic treatment and continued for 5 or 6 months until he was assymptomatic for several weeks.

Then three years later, on vacation, Ben had a sudden acute bout of severe TMJ (trans-mandibular jaw pain) remeniscent of earlier days but far worse. He could not even open his mouth to eat. At that time, he sported a slight small rash at the site of a known recent tick bite. He was put back on antibiotics for several weeks and has apparently fully recovered.

Ben is doing great; no recurrance of symptoms or re-infection.

TIM
Tim always seemed to marching to a different drum beat than his brothers. He seemed to focus on the most obscure things and be totally oblivious to his surroundings at times, yet at other times, the slightest repetitious noise would be so annoying to him. He was sociable and interactive most of the time but always seemed to be in a fog. Having had some exposure to autism and mental retardation, I felt Tim did not fall into either of those categories with his peculiarisms. The doctor didn't seem to think there was any problem either. But by the time he was seven years old, I knew something wasn't right. He was overstressed by the same kind of school work his two older brothers had encountered at his age, to the point he actually verbalized, "I wish I were dead!" He had too many emotional outbursts compared to his brothers, even his younger brother!

This scared me into seeking consultation with local school specialists and a pediatric neurologist. He was found to have an above average IQ but an extremely slow processing speed. He was also less coordinated physically than his peers and lacked muscle tone. As  homeschooling parent, I chose to modify his curriculum to accomodate his learning style. As I succumbed to the effects of chronic untreated Lyme disease, I eventually was convicted that Tim needed to be thoroughly evaluated for Lyme disease. I wondered if he could have gotten it congenitally as he never exhibited acute illness.

Tim also had a high tolerance for pain. The few vague aches and pains, headaches, and joint problems he mentioned over the last couple years could be from undiagnosed, untreated Lyme disease.

About a year after I got off antibiotics, I brought Tim to a pediatric Lyme specialist for evaluation as his problems persisted. Although routine tests (Elisa, Western Blot) for Lyme disease were negative, a blood culture for Lyme disease not available yet to the general public showed he had live spirochetal infection. Other tests showed he had ehrlichiosis and babesiosis as well. His symptoms seemed indicative of neonatal infection. Yet my other children did not manifest this way.

Years later, I remembered that Tim, as a newborn, had consumed donated breast milk from two friends while I was hospitalized for a kidney stone. One of those women tried to commit suicide within a year or a year and a half of his birth for no apparent reason. I had lost touch with her due to a move. I have often wondered if she had Lyme disease and these other tick-borne diseases which no one else in the family has had.  

A cognitive evaluation by a neuropsychologist also revealed similar findings to the tests done several years before. The findings included a diagnosis of Aspbergers Syndrome, a mild form of autism, and slow processing speed that kept  Tim from meeting his potential in various subject areas.

So in Tim's case, we were dealing with two different but intertwined medical problems. The antibiotic treatment has helped incredibly regarding lifting the brain fog, alleviating vague pain and decreasing and almost completely curtailing emotional outbursts. We continued his treatment in hope of increasing his processing speed as much as possible. If only we could upgrade his brain like we do our computers!

Tim finished his treatment for Lyme disease after just over 2 years.

Tim was doing great with no complaints at all. We had him re-evaluated for Aspbergers Syndrome and were told although he has some characteristics of Aspbergers, he does not fit the profile overall. He just has a personality deviation from the average kid and he's "wired" differently as far as how he processes things in his brain. I think that runs in the family on my side!

PETER
Peter is a very active boy. With a few hours of sleep every night, we find his "batteries" are fully charged without fail by the next morning. However, when he was about eight years old, a tick was found on his scalp, and 1 1/2 weeks after the bite, he developed a bull's eye rash near his right armpit. (Click for picture). He got the classic fever, headache and malaise. Aggressive antibiotic treatment was begun and within a week he was back to playing baseball though he tired more easily for a couple more weeks.

Phew... Not the end of his story, though...

One year later, Peter had a tick at the base of his neck. I removed the tick but noticed a very pale, hard to see pink rash spread upward underneath his hair. He also was not feeling well-- headache, malaise, slight fever. We got him on antibiotics right away, but after six weeks (normal aggressive treatment for early, acute Lyme disease,) his fatigue persisted. We continued antibiotic treatment a couple more months, and Peter seems to have fully recovered.

Peter's doing great too! He has been off antibiotics for 1 1/2 years with no re-occurance of Lyme symptoms. He spends a lot of time outdoors like Joel. He's found a few ticks crawling on him, but none of them have bitten him, thank the Lord!

A year or so after Peter's recovery, our family relocated from a heavily wooded area to an open field, but there's still plenty of ticks around. We've also converted our in & out cats to indoor cats despite their longing to go out on the prowl.

We made it a whole year without any new cases of Lyme disease in our immediate family! Only Tim remained on antibiotics for Lyme at present. Then came the fall... Peter got 3 tick bites playing in a friend's wooded yard. A few short weeks later, malaise and forgetfulness set in. But it went away. Then it came back 3 or 4 weeks later, and went away. By the 3rd occurance, I realized he was likely re-infected. He tested positive for Lyme disease again and was re-treated for about 2 years due to persisting symptoms. Afterwards, he was completely assymptomatic and remains so to this day.

GINGER
I suppose some of you are wondering how Ginger is... She's is our chocolate labrador whom we've had for years. Well, long before any of us had been diagnosed with Lyme disease, she had acute Lyme disease herself. She suffered malaise, a limp that came and went, lack of appetite and had a depressed look about her. We immediately suspected Lyme disease. She was treated with amoxycillin and recovered quickly. She also had the canine variety of Lyme vaccine. It doesn't always work that well. Yet despite numerous tick bites since, she has never exhibited recurring Lyme disease. She's a tough, frolicky old pup, and aside from a funny gait due to a car incident in 1989, she hardly showed her age of thirteen!

We had to put Ginger down as her age finally caught up with her. We miss her dearly.

Nancy B.

Email Nancy: mailto:nancy[AT]lymesupport.com

"Never give up. Never surrender." (Galaxy Quest)

The information presented in these pages is for resource and educational purposes only. Nothing herein is intended to be medical advice. Only your physician can give medical advice!
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