|Our family in 2016, on vacation & visiting family in South Dakota|
In 2002, I was living a happy and healthy life. I had left my fast-paced career in Environmental Management Consulting two years earlier, to slow our lives down and enjoy our kids more. I was home with my two young sons, thoroughly enjoying my time with them and working a bit on the side to launch a new career in freelance writing. My life was low-stress, and I loved my new-found freedom and the extra time with my family.
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 were normal and he had no idea what was wrong. 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 with a 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 Encephalomyelitis or ME). I looked it up online and was surprised to discover a CDC page on CFS, which was indeed real. I found two books on ME/CFS in the library, and I sobbed as I read them: for the first time in a year, I recognized my own ordeal in someone else’s words. My symptoms fit perfectly. I learned that ME/CFS was 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. I had no idea how fortunate I was at the time, but she was one of very few doctors who not only recognized and understood ME/CFS but also knew the basics of how to treat it. She suggested we begin by correcting sleep dysfunction, telling me that improving my sleep would improve all my other symptoms. She was right, though it was still a struggle for me to adjust to this new life of limits and resting.
Then, two years after I got sick, the unthinkable happened: our two sons also developed ME/CFS, which is known to have both genetic andinfectious roots and is common among multiple family members. 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 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 for all of us. Eventually, things began to improve, slowly, with a relentless quest for effective treatments. 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 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 for OI, plus lots of salt and extra fluids, both of our sons were eventually able to return to school full-time. With that 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 (fortunately, as blood tests only catch about 60% of Lyme cases), 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 return to his previous baseline, where he’d been doing so well since the OI treatment. Very gradually, over the next few years, his condition worsened significantly. For a long time, we assumed it was his ME/CFS, but additional 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 she had no explanation for 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 (LLMD) who was able to confirm that he did indeed have bartonella, as well as Lyme disease and babesia, another tick-borne infection. It was likely these infections had been in his body since that bout of Lyme more than three years earlier – back then, no one had even suggested other tick infections, so they had never been treated, and you can’t get rid of Lyme if other tick infections are present and untreated.
Seven 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 school accommodations and 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 sixth and final year of college, living in an apartment with a friend. He is only able to take 3 classes a semester due to his illnesses, but he is managing – and enjoying – college and making the best of things. He has improved enough that he is able to work part-time as a waiter, joined the sailing club, and has an active social life - a far cry from being almost bed-ridden in high school! His brother fully recovered after 10 years of mild illness, no longer needs medication, and is in college full-time, working, and able to play sports.
It’s now been almost 16 years of living in the After for me. Although my life is still defined by limitations and piles of pills every day, I have also improved enough, with multiple treatments, that I can function fairly well (though with a daily nap every afternoon) and even exercise a bit - carefully. I've kept this blog going for over eleven years and am finally growing my career as a freelance writer. My husband and I love to travel with our camper, at our own pace.
We’ve discovered some surprising positive side effects to a life with chronic illness. We were forced to slow down, so we spent more time together as a family. Our sons 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.
I hope you will find plenty of helpful information here on my blog. I'm working on a more detailed How To Get Started page, but in the meantime, my blog post on Effective Treatments for ME/CFS is a good place to start and provides information on the treatments that have most helped my sons and I over the years.
I run two groups on Facebook - we confirm membership for both through messaging, so after you click Join, please watch for pop-up questions and messages and reply promptly:
Parents of Kids and Teens with ME/CFS and Related Illnesses (open to parents of sick kids/teens/young adults only)
Teens with ME/CFS and Related Illnesses (open to young people between 11 and mid-20's)
(NOTE: "related illnesses" in this case generally includes fibromyalgia, Lyme disease & other tick infections, Ehlers-Danlos Syndrome, POTS, and other similar or co-morbid conditions)
For everyone else, I also recommend the group Myalgic Encephalomyelitis Global on Facebook.
And if you enjoy reading, I also write a book blog!
So, that's our story - what's yours?
I welcome comments here and on all blog posts and will reply promptly.