Wednesday, March 02, 2022

It's My 20-Year Illiversary

On March 2, 2002, I woke up feeling awful, exhausted and aching all over, with the worst sore throat I'd ever had, and my life forever split into Before and After. Today, it's been a full 20 years of living in the After and adjusting to life with chronic illness. A lot has happened since then, with lots of ups and downs, though thanks to many effective treatments, I am in much better shape and able to do more now than I was 15-20 years ago. You can read a more story-like summary of our years of illness at the Our Story tab, but here's a detailed summary.

March 2, 2002

Abrupt onset (like 75-80% of patients) of ME/CFS, with flu-like symptoms. Unsure what the initial trigger was, but it could have been my allergy shots, since I had just recently reached the maintenance level. Symptoms came and went in seemingly random patterns (it took a long time to finally see the exertion-crash pattern). 

March 2003

Diagnosis! After a year of getting hundreds of lab tests and seeing dozens of doctors (all of whom said, "I have no idea what's wrong with you"), I went to see our new primary care physician for the first time. She was close to our house, was a woman, and was accepting new patients; otherwise, we chose her somewhat randomly! I showed her my 3-ring binder full of lab results and symptom graphs and pointed out the mysterious ups and downs. 

She said, "I'm pretty sure you have Chronic Fatigue Syndrome. I have a few other patients with it. Would you like to try some treatments?" That sounded like something made-up to me, so I did a little more research, found a CDC website about it, and read a couple of books where I recognized my "mystery illness" for the first time in their pages. 

I went back to her, and she started trying treatments, telling me the first priority was to correct my sleep dysfunction because good quality sleep would improve everything. She was right, of course!

Yes, I know how incredibly lucky I was to find her!!


July 2004

While on vacation, my husband and our younger son both got a virus, including a cough that lasted for 6 weeks (with current knowledge, possibly a SARS-type virus?). After that, both of our sons started showing signs of ME/CFS (though we didn't want to believe it) - fatigue, recurring sore throats, and worst of all, crashes after exercise. The older son (who hadn't caught the virus but had been exposed) had more severe symptoms.


December 2004

Our older son and I went to western NY state (near my hometown of Rochester) to see Dr. David Bell, a renowned ME/CFS specialist (now retired) and the top pediatric ME/CFS expert in the world at the time. He officially diagnosed our son with ME/CFS (then known often as CFIDS) and confirmed my diagnosis.

Dr. Bell also did an OI standing test of my son in the office. I had read about Orthostatic Intolerance (OI) but didn't think we had it because we never felt dizzy or fainted. Boy, was I wrong! I was stunned by how sick my son got from less than 10 minutes of standing in the doctor's office, as his heart rate went sky-high and his blood pressure plummeted. Dr. Bell explained that I would react the same way but might be too sick to get the two of us home that night!

May 2005

Dr. Bell had introduced us to Dr. Peter Rowe at Johns Hopkins, who specialized in OI, especially in kids with ME/CFS. He couldn't take on any new patients (even back then!) but talked to me by phone and e-mail and spent two hours on the phone with our pediatrician, teaching her all about OI and how to treat it. Our son began taking Florinef (fludrocortisone), which helps the body hold onto more fluids and salt to overcome the low blood volume in ME/CFS. Once he got up to an effective dose (0.2 mg for him at that time), it was like someone had flipped a switch, and he came back to life! By spring 2006, he was back at school full-time, had resumed extracurriculars, like band, and was playing soccer again.



Both my son and I continued seeing our primary care doctors, consulting with Dr. Bell and Dr. Rowe, and started seeing Dr. Susan Levine, ME/CFS specialist in NYC. Through all of those doctors, we both corrected sleep dysfunction, treated immune dysfunction and underlying infections, and treated OI (low-dose beta blockers helped a lot). Both of us improved significantly.


Spring 2007

Our older son got Lyme disease for the second time. The first time, before ME/CFS, he had been treated and had fully recovered, with no symptoms for over a year, until ME/CFS hit. This time, standard treatment (a month of antibiotics) helped with some new, acute symptoms but his worsened fatigue and other symptoms continued.

That spring, we finally got our younger son officially diagnosed. His symptoms were always milder, and we'd talked to Dr. Bell about him, but since he was only 6 when the boys first got ME/CFS and was still able to function semi-normally, he advised us to wait to diagnose him, saying sometimes younger kids with mild symptoms recover. But by March of 3rd grade, he had missed 35 days of school already, and his principal called us to find out why. With everything she'd learned from Dr. Bell and Dr. Rowe, our own pediatrician ran all the tests to rule out other things and diagnosed him. She also immediately began treating him with Florinef, and he was soon back to living a pretty normal life, other than crashing when exposed to a virus or after extreme exertion. He stayed on Florinef and generally missed 20-30 days of school a year (and had accommodations plans, like his brother), until age 16, when he did indeed recover fully.

August 2008

Sudden onset of knee pain and nausea told me that I, too, had Lyme disease, though my screening tests kept coming back negative. After much arguing (and some tears on my part), my primary care doctor agreed to try a course of doxycycline. My symptoms immediately cleared up, back to my "normal" ME/CFS baseline, and she was convinced! After a few months of treatment, when the symptoms still came back after stopping antibiotics, she said we were beyond her expertise, and we found a Lyme specialist in a neighboring state, who tested me for co-infections (none) and kept treating my Lyme with a varied treatment approach that worked well.


Despite the treatments that had initially helped, our son got gradually worse over a three-year period. He had some odd symptoms his pediatrician couldn't identify, but with the help of a parents' group online, I finally realized his weird rashes were from bartonella, another tick infection. I took him to my Lyme specialist, who discovered he still had Lyme, plus bartonella and babesia, all probably from that initial 2007 bite. More on tick infections, which are common among those with ME/CFS and fibro).


My Lyme symptoms kept returning, and I kept treating for a period of time then stopping, in a never-ending cycle! In 2019, I started seeing the new Lyme specialist our son was seeing (we loved our old one, but this one was closer to home). She suggested some new approaches that helped.

May 2019-present

After finishing college (an arduous process, even with accommodations), our son hit bottom medically. He was very ill, almost homebound and had some new symptoms, including anxiety and severe GI symptoms. He had lost 40 pounds and was vomiting every day and nauseous all the time. That's when he started seeing the new Lyme specialist, along with her partner, a functional medicine specialist. Between the two of them (and lots of testing and new treatments), our son has gradually improved and is doing quite well now. He was able to work 30 hours a week last summer and is now looking for a full-time job, which feels like a miracle!

March 2020-November 2021

Yes, that was the start of the pandemic, but for me, it was also the start of a 22-month-long relapse with no obvious cause. I suspected my Lyme again and went back to the new Lyme specialist, who helped me to once again get my Lyme under control with some new treatments. She also found and treated hypothyroidism. The Lyme flaring up and the worsened immune dysfunction of ME/CFS triggered old viruses to reactivate again, so I went back on antivirals. And, kind of by accident, I discovered that a higher dose of inosine (a super-cheap and over-the-counter immune modulator) on my high-dose weeks also helped. I think all of these factors helped, and by December 2021, I was back to my previous "normal" ME/CFS baseline (keeping up all those treatments).

January 2022-present

Finally feeling pretty good again, I got COVID on January 5 from my father-in-law's nursing home! I am mostly recovered, though energy and stamina are still lower than normal for me. I am slowly getting back (I hope) to my baseline.

Whew, that was supposed to be a quick summary! Nothing with these illnesses is simple, of course. But, that's our story, so far.

How long have you been ill?

Which diagnoses do you have?

What treatments have most helped?

Let me know in the comments below.

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