My Boys' Lyme Stories
I hardly know where to begin, my boys have had Lyme disease so many times!
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.
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.
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.
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.
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.
Email Nancy: mailto:nancy[AT]lymesupport.com
"Never give up. Never surrender." (Galaxy Quest)
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