'My Son & I Have Lyme Disease': One Mom Shares Her Struggle

Summer has moms on high alert for tick bites on kids, and for good reason: These nasty insects can cause all sorts of illnesses including Lyme disease. Only what's it like to actually come down with this much-dreaded ailment? To find out, we talked to Kathleen O’Rourke, 49, co-founder of Bay Area Lyme Foundation, whose 15-year-old son, Louis, came down with the disease four years earlier -- a discovery which led her to realize that she also had the condition herself. Here is their story:

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How did your son come down with Lyme disease?
In November of 2009, an hour or two after playing outside with our new puppy, Louis was watching TV and noticed something itched on his stomach. He scratched, felt something, and took a look. Then I heard his screams: "Mom, get it off, get it off!" I ran in and immediately pulled it out -- only I did it all wrong because I didn’t know that there was a right way to pull out a tick.

How did Louis's symptoms progress from there?
Days later, Louis appeared to have the flu. It was going around, so I never thought about it being something other than the flu. As it turns out, flu symptoms are similar to early stage symptoms of Lyme disease. The flu appeared to pass, but by February, he was having neurological problems in his feet. He complained that they were really heavy, and he was struggling with intense fatigue. His pediatrician dutifully went through the list of maladies matching Louis’s symptoms, but he couldn’t figure out what was wrong. I asked about Lyme disease because of the tick bite. The pediatrician told us there is no Lyme disease in California so that couldn’t be it. He also said there was no target or bull's eye rash; plus, the tick hadn’t been on him long enough. I went home relieved that at least this scary illness wasn’t on our list of possibilities.

So you were thrown off course ... how'd you get back to suspecting Lyme disease?
As soon as we got home, Louis came down with yet another strange symptom, so I went online and started researching Lyme disease. And there it was: The new symptom was another one common to Lyme disease and, to me, the Lyme profile was becoming ever more evident. What do you do when your doctor not only doesn't agree with you, but refuses to entertain a viable possibility matching the reported symptoms and circumstances of a serious disease? I was befuddled. The only thing I could do in the moment was pray for help.

How did you finally get a diagnosis?
Within a day or two I unexpectedly ran into a friend in a store parking lot. She was a nurse who had helped a mutual friend suffering from Lyme disease. She gave me the name of a Lyme literate doctor (LLD). By the time the time she could see my son, sometime in May of 2010, I and an office nurse had to carry Louis into the examination room. He was like a person in a sort of suspended state; his general misery was so great, his personality had simply disappeared. Through a thorough clinical evaluation and supporting blood work, this LLD confirmed Louis’s Lyme disease diagnosis. In fact, not only did he test positive for Lyme, but the bite of one tick had given him three additional infections. He also had Erhlychia, Babesia, and Bartonella.

What treatment did Louis receive?
The LLD prescribed an intensive course of antibiotics and other drugs. It took about eight months before his symptoms began to turn a corner. My son’s personality returned, and he continued to gradually climb out of the terrible illness bit by little bit. After a year and a half of treatment, he appeared to be cleared from illness. Yet last summer, Louis contracted Lyme disease again. We actually think he was re-infected on a camping trip. How that is even mathematically possible is a conundrum. However, there is much we don’t know about Lyme disease. There is some precedence for attraction of bugs to certain people or people with certain illnesses. It is all hearsay because of the lack of research. This disease is complicated and severely underfunded. The CDC has readjusted its previous estimate of 30,000 new cases per year to 300,000 cases per year. This is a huge emerging infectious disease and really demands our attention.

So how did you find out you had Lyme disease as well?
In the course of researching Louis’s condition, I realized that all the mysterious maladies I had been suffering for the previous four years also indicated a possible presence of Lyme disease in me too. However, my case had been a more low level chronic presentation. My symptoms were dizziness, intense fatigue -- couldn't make it through the day sometimes without a nap -- heart palpitations, nerve pain in the feet and hands, fuzzy vision that comes and goes, sore and painful joints, intensely sore soles of feet, and cognitive impacts such as impairment of word recall and attention deficit. I just can't listen to a story or instructions and get it all. At times I felt like I was walking at a lean to the left down a hall or like I was tipsy. So after Louis’s treatment program was stabilized, I got myself into the LLD for an evaluation as well. In the end, both of us tested positive. I was on antibiotics for four years, off for a year, but appear to be relapsing now and so am back on them. The doctor says it is not unusual for longer term cases to have a series of relapses on their way out of this disease, or at least I hope will be my way out of it.

What message would you like to share with other moms?
Arm yourself with information. I didn’t know anything about tick avoidance or Lyme disease, and that is why we got so sick. It is critical to be safe in the outdoors by staying on the trails and not in deep underbrush. Also wear light clothing, bug spray, and do tick checks. If you do get a tick, remove it by using a tick remover placed at the absolute closest point of the skin and lift it off. Finally, if flu symptoms develop, I also encourage all moms who suspect their children have Lyme disease to seek a doctor familiar with Lyme disease for a diagnosis. Children can present with perplexing psychological and attention deficit-like symptoms, and symptoms can vary greatly from individual to individual. It is important that people know the blood tests for Lyme miss about 60 percent of the people who have the disease. This is why a clinical intake with a Lyme Literate Doctor is paramount for a correct diagnosis. The blood work is backup.


Have your kids had Lyme disease?


Image via Kathleen O’Rourke

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