Sue & Her Sons

March 4, 2015

 

 

In March 2002, my life neatly divided into Before and After. On March 2, I enjoyed a typically busy Saturday including a vigorous exercise class at the Y, grocery shopping, and hosting a dinner party for friends in the evening. I woke up the next morning feeling terrible, with a severe sore throat, aching all over, and completely exhausted. I thought I’d caught a virus. I had no idea my life had changed dramatically overnight, and I was now in the After.

 

My “flu” never went away. After three weeks of lying on the couch, I dragged myself to my doctor, but all my tests came back normal. That was the start of more than a year of visiting dozens of doctors and having hundreds of blood tests, all coming back “normal.” Some days I felt better, but if I tried to resume my normal life, I was soon back on the couch again with sore throat, flu-like aches, and total exhaustion.

 

Finally, more than a year after getting sick, I found a new primary care doctor who recognized immediately what was wrong with me. She told me I had Chronic Fatigue Syndrome, which sounded like something made-up to me (outside the U.S., it is known as Myalgic Encephalomylitis or ME). I looked it up online and was surprised to find a CDC page on CFS, which was indeed real. I found two books on ME/CFS in the library, and sobbed as I read them: for the first time in a year I recognized my own ordeal in someone else’s words. I discovered that ME/CFS was actually an immune system disorder that often left its victims housebound or bedridden.

 

I did my best to cope with the realization that I was now chronically ill, and I tried some treatments with the help of my new doctor. Then, the unthinkable happened: our two sons also developed ME/CFS, which is known to have both genetic and infectious roots. Our older son, who was 10 years old, had symptoms eerily identical to my own. Our younger son, only 6, had different symptoms, including chest and back pain and frequent headaches, as well as the exhaustion and telltale exercise intolerance of ME/CFS, but we soon learned that those were common symptoms in younger kids.

 

Now, there were three of us sick in the family, with only my husband left to care for us. Those were dark times. Eventually, things began to improve, slowly. We took my oldest son to a pediatric ME/CFS specialist and learned more about our illness and treatments that would help both boys. As for me, I relentlessly scoured the latest research, constantly looking for new treatments and taking study abstracts into my doctor. Nothing helped a lot, but several treatments helped a little and those added up over time. Little by little, we found our “new normal.”

 

We discovered that treating Orthostatic Intolerance (OI), a condition that is an integral part of ME/CFS where the blood pressure plummets and the heart rate soars whenever upright, brought dramatic improvement to both boys. With medication, plus lots of salt and extra fluids, both of our sons were eventually able to return to school full-time. With the treatment, our youngest son – whose ME/CFS was always milder – was almost symptom-free and even able to play sports again.

 

In 7th grade, after about a year of doing well on the OI treatments, our older son suddenly developed new symptoms, including acute knee pain, nausea, and headaches. We suspected Lyme disease and a blood test confirmed it, so his pediatrician treated him with 4 weeks’ of antibiotics. His new, acute symptoms improved, but he was still more fatigued than usual; he didn’t seem to return to his previous baseline, where he’d been doing so well. Very gradually, over the next few years, his condition worsened. For a long time we assumed it was his ME/CFS, but treatments for that didn’t seem to help much.

 

Finally, when he was in 10th grade, we figured it out. He had developed some very strange symptoms: stretch mark-like lines across his back and burning pain in the soles of his feet, especially when he was active. The pediatrician told us the marks were stretch marks, though that didn’t make any sense to us, and had no answer to the foot pain. I came across a discussion of Lyme co-infections in an online parents’ group and realized these were both classic signs of bartonella, another common tick-borne infection. The light bulb went on!

 

We took our son to a Lyme specialist who was able to confirm that he did indeed have bartonella, as well as Lyme and babesia, another tick-borne infection. It was likely these infections had been in his body since that bout of Lyme in 7th grade – back then, no one had even suggested he get tested for other tick infections, so they had never been treated.

 

Five years have now passed since the diagnosis of his three tick infections, and those years have been filled with struggles and challenges. With the infections present for so long, they have proven hard to treat. At first, he showed no response to any treatments. Then, about 18 months into the process, he got much, much worse (in what is known as a herx reaction). After several years on antibiotics, he had to stop them because they had had negative effects on his body, with mitochondrial problems and severe yeast overgrowth. He is now on an all-herbal protocol that is working well, though he still has to proceed very slowly and gradually to prevent getting worse.

 

He missed 90 days of school his senior year of high school but still managed to graduate on time, with help from home tutors. New treatments tried that following summer led to enough improvement that he could start college in the fall with his friends, living on campus (about 20 minutes away from home). He is now in his third year of college, living in an apartment with three friends. He is only able to take 3 classes a semester due to exhaustion, brain fog, and other symptoms, but he is managing – and enjoying – college and making the best of things. His brother is fully recovered now (after 10 years) and no longer needs medication.

 

It’s now been almost 13 years of living in the After for me. Although my life is still defined by limitations and piles of pills every day, I’ve discovered some surprising positive side effects. Illness has forced us to slow down, and spend more time together as a family.  Our sons have developed a wonderful sense of empathy because they know what it is like to deal with challenges. They are both incredibly kind – to family members and peers as well as strangers.  We have also been able to help other people, including families like ours, through my blog, Facebook groups I started, and a local support network we formed. Odd as it may sound, we have all become more positive after living through such trials. We have learned to find joy in small moments and to be grateful for what we have.

 

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