Health Rising’s recent series of recovery stories have presented some of the more unusual pathways (unusual protocol, mitochondrial drug, nebulized hydrogen peroxide) people with ME/CFS have used to recover.
- Up from the Ashes: James’s Severe ME/CFS Recovery/Recovering Story – CIRS-based treatment approach
- A Rapamycin Resurgence: An MD Moves the Needle on his ME/CFS – Rapamycin
- Jason’s Eclectic Mix of Treatments Returns Him to Near Normal Health After 16 Years with ME/CFS
Lucie’s recovery story brings its own different slant: when after years of searching Lucie happened on the right blend of treatments for her – they turned out to be astounding simple (and inexpensive as well.)
It should be noted that Lucie had “relatively mild” ME/CFS that didn’t require a complex protocol, or an unusual drug – it simply required that she fit the right fit of treatments. (It should also be noted that perhaps only in ME/CFS could an illness that dramatically limited a person’s ability to work, made any type of exercise impossible, produced a boatload of disturbing symptoms, and reduced a person’s social life to almost nothing be described as “relatively mild”.)
Here is Lucie’s story – in her own words.
I probably became ill in 2011 but having a very busy life, I thought it was just that I was overdoing it. And aging. I was all of 52.
So, instead of taking my bike back and forth to the regular meetings of the not-for-profit organization for homeless women for which I had been the treasurer for many, many years, I started taking a Bixi from the wonderful bike-to-rent system in Montreal. I would take a bike downhill and take the subway to come back home, uphill. I was also losing my legendary patience and becoming very irritable during the 3-hour long meetings. Finally, I couldn’t do it anymore. Heartbroken, I resigned from my chair. To this day, this still breaks my heart.
Also, often, I would take a Bixi for a ride with my dog, Romeo. I would pedal – he would run. The monthly statement of my Bixi usage showed me something I had not grasped: from my usual 15-minute rides, I was down to 5, 3, 2 minutes rides at a time. “You are getting old, look at your workload, it’s too hot, it’s too cold, this is normal”, I was told. I knew, though, that this fatigue was of a different nature.
Of course, things went downhill, including my weight which had been extremely stable in the past. My GP ordered the general round of tests. I obeyed diligently. First, a stress test; the cardiologist said I was doing very well, above normal even. It was actually a great pleasure to run until exhaustion on that device. A few days later, I experienced my first massive PEM. It lasted almost a month. At the time I did not have the words to name it. Between episodes of brain fog, I was able to work. I am a chartered professional accountant running a small office. Luckily, my office is up a flight of stairs from my home.
With two or three hour-lunch breaks, often with a bath to warm me up (my hydrotherapy, I would call it), I was able to maintain somewhat of a presence at work. If I had had to commute, I would not have been able to do it. During those long lunch breaks, I would very often meditate, listening to various recorded relaxation segments. I would fall asleep for an hour or two.
Eventually, I would wake up and be well enough to put in a good 2 hours of quality work. In September 2013, I wrote to a good number of clients that I would not be able to prepare their income tax returns for the next year. A woman, who was numerically challenged and therefore always brought a disorganized file, and who was also without many financial resources, answered back: she thanked me for all the years I had accompanied her through becoming self-employed, moving, getting married, and taking care of a sick brother. Almost a love letter. Without ME, I would not have known that I had had such an important role in her life.
MDs Provide No Help
Like a lot of patients, I started my solitary ME/CFS internet journey and soon discovered a community and its gurus: Cort Johnson, Ron Davis Ph.D., Jose Montoya MD, Nancy Klimas MD, Lucinda Bateman MD, Ellie Stein MD, and eventually Alain Moreau Ph.D. from Montreal where I live, who now leads the ME/CFS Collaborative Research Center at the CHU Sainte-Justine/ Université de Montréal. I was grateful that my knowledge of English is pretty good. Boy, did I read. And printed numerous complicated articles, which I organized into binders to which I would often return. And read, and read.
I was never prone to infections, but my blood work was now showing a high ESR: 52. My GP sent me to see a rheumatologist right away and numerous tests and extensive interviews were performed. The morning when I was to get the results, I waited in this overcrowded hospital, under neon lights on an uncomfortable chair for a long time. Most ME sufferers know how debilitating these conditions are.
When I finally met with the doctor, I was exhausted. She explained that there was nothing wrong with me. I burst out crying. She then told me I was probably suffering from depression. I said that I had suggested this hypothesis to my GP and my long-time psychologist, and they did not think so. This specialist in rheumatology, who barely knew me, then told me that I was very intelligent, and I had probably been able to camouflage my depression. Never had a compliment to my intelligence hurt so much!
A few years later, after the 2015 Institute of Medicine report, ”Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome“, was published, I photocopied the introduction and the table of contents of the report and left it at her office, with a note letting her know that I was hoping nobody else would have to go through the same difficult situation with her again. Of course, I never used the referral to a psychiatrist that she gave me. I might frame it one day.
Meanwhile, a worried client of mine asked if I was willing to speak with her friend who was a physician in the States. Yes, of course. I sent her all my test results. She questioned, then suggested some other tests, and concluded that there was nothing else she could recommend to get to the bottom of this. I later learned she was an oncologist. She knew what she was looking for… I appreciated her kindness in all this, even though the results were inconclusive. It is not the destination that is important; it is the journey. Easy to say, harder to experience.
ME/CFS Experts Provide Help
In June of 2014, Dr. Montoya‘s advice was the first that I followed: DO NOT OVER-EXHAUST YOURSELF. He wrote that in capital letters (at a time when capital letters were not used as an insult in a tweet). I stopped everything as much as possible and started all over from zero. I would do only what I had the energy for. No more pushing, no more effort. Completely counter intuitive. Luckily, I could count, and still do count, on the wonderful partner I have, both at home and in the office, to support me.
Peter Rowe MD taught me a new concept: orthostatic intolerance. Under his virtual supervision, I drank 2.5 liters of water a day and added salt everywhere. I got up in the middle of the night with insomnia and listened to my body: if it wanted a lot of salted butter on a piece of toast, I obeyed.
In July, I went to a meeting of the AQEM our local ME association, where I met an ex-nurse-in-chief who explained that she needed to sit down to brush her teeth and just got a $10,000 electric wheelchair. I was horrified. The participants looked at each other, nodding with understanding when I explained that I needed to wear my sunglasses in the too-bright room.
They told me that this disease brings you a new identity. I was silently shocked, not ready to face that reality. Not me. Luckily though, through this association, I was able to get the name of a neurologist with whom I was able to get a diagnosis. Yep. Myalgic encephalomyelitis. Unfortunately, this doctor was just about to retire and informed me he would not be available for follow-ups. Sigh.
Slowly, I regained strength. Bruce Campbell’s story of recovery through pacing inspired me to walk my Romeo in the very near and beautiful Lafontaine Park, one bench at a time. I would lie down on a bench and walk a little more to the next bench. With maturity and ill health, I had stopped worrying about what people would think. Benching had a new meaning.
I asked my GP for a tilt table test. She referred me to the same cardiologist who had supervised the stress test that had caused the massive PEM. I explained to him, to the best of my limited but fast-growing knowledge, that something was wrong with my blood pressure. Dysautonomia, a self-diagnosis I established much later. I could see in his eyes that he was really listening, evaluating my condition: what I was saying made sense. He referred me to a neurologist, specializing in this type of evaluation.
On the day of the appointment, after only 8 minutes in the tilted position, I knew the test would be the proverbial proof in the pudding: I suddenly felt very weak, and 8 minutes was the average time I could stand in line in a store. I asked to be put back in the horizontal position. No. The test had to last 20 minutes to be valid. Hippocratic Oath down the drain: do no harm…
I laid there for another 12 minutes feeling the impact on my body, or more precisely, on my system. Once the test was over, the verdict came: there is nothing wrong with you. I sat in the corridor crying my heart out from the torture and despair… Passersby must have thought I had just been diagnosed with an awful neurological disease. Nope. Nothing was wrong with me.
The low blood volume theories, though, began to make sense. I learned to go places with my blanket, my pillow, and my jug of salted water. I attended numerous parties lying down in living rooms and restaurants. I laid down in the architect’s office, in the lawyer’s office, at break times when I had to attend day-long income tax classes twice a year.
I also tried different compression outfits; finally, I discovered that I need compression on my belly and my thighs. (A recent paper suggested that thigh and abdomen compression helps while lower leg compression isn’t as effective.) Especially in hot weather. Vasodilatation – wide open blood vessels that were allowing blood to collect – it was called. The theories around the vagus nerve and its ramifications were also becoming familiar and made sense. Breathing exercises while lying down on the floor, and my dog between my legs, were probably stimulating my vagus nerve, reactivating the rest and digest functions of the parasympathetic system.
I realized I was now living my mother’s life. I think that she experienced PEM and crashes and developed her own pacing method: she would prepare my favorite dish of chicken tetrazzini a week ahead of my coming home from college. On the first day, she would cook the chicken, the next, cut it into pieces, then cook the pasta, and on the final day, prepare the mushrooms and the sauce. She would assemble the whole thing the day the dish would be served. It took me a long time, and ME, to become aware of the strategic planning behind the smile.
Was my mother hit by ME after giving birth to me? As my older brother summarized it, “after you were born, family life became boring”. Or was it the kidney tuberculosis that she was finally diagnosed with a few years later? Or did the ME install itself after the tuberculosis was cured? I accept, most days, to never have the answers to these questions.
Understanding the aerobic/anaerobic threshold helped me adapt to my daily tasks; everything in moderation. Like the 102-year-old man I had taken care of as a summer job would explain the secret of his longevity: a little bit of everything. I realized that gardening was an activity that I could do for hours.
In the fall of 2018, the numerous readings of patients’ experiences in Cort’s Health Rising “Wonderland” made me realize that when the pain would appear, it was the first symptom of an episode that would bring along with it brain fog, a drop in blood pressure, and general unwellness.
- Lucie first knew something was wrong when she had to quit her bike riding. Visits to her MD and a cardiologist were unrevealing and she was told – at the age of 52 – that she was probably just getting older. Her rheumatologist told her that she was depressed. To her astonishment (she felt horrible during it), a tilt table test was normal. (Since it doesn’t measure blood flows to the brain, it probably missed that).
- After a couple of months, she was down to 2 hours of work a day, had trouble walking, and told many of her clients (she’s an accountant) that she could no longer see them.
- ME/CFS doctors and websites, though, began to provide help. Dr. Montoya’s admonition to “NOT OVER-EXHAUST YOURSELF” brought pacing to the fore. Dr. Rowe’s advice on orthostatic intolerance (salt and salt water (2.5 liters/day) to improve blood volume), compression wraps on her thighs and abdomen, and breathing exercises provided some relief as well.
- Her major recovery began, however, when trying to reduce her pain, she decided to take 1,200 mg of Motrin/ibuprofen daily. Also, to take care of allergies and sleep, she took 25 mg of Benadryl every night, per Nancy Klima’s advice. (She later found out that the anti-inflammatories also increase water retention, reduce blood vessel constriction and improve blood volume.)
- A month later, the results were just spectacular. For the first time in 7 years, she experienced some vitality, stamina, and endurance. She was able to slowly increase her activity levels. Within 6 months, she’d regained 10 lbs and felt like her old self.
- Worried about the side effects of Motrin, her doctor added a medication that protects the stomach (pantoprazole) and prescribed 250 mg of Naproxen morning and night instead of Motrin so that she only had to take the medication twice a day.
- After four years on her anti-inflammatory and saltwater protocol, she dropped – at her physician’s urging – the anti-inflammatories – and continued on a reduced (1.5 litre/day) saltwater protocol. A month later, she remains in normal health.
I had religiously been drinking 2.5 liters of water a day with lots of salt, and wearing a compression wrap, and they had helped. I decided to keep a regular amount of anti-inflammatories in my body to keep the pain at bay, and hopefully, the rest of the curse. I started on 1,200 mg of Motrin/ibuprofen daily. Also, to take care of allergies and sleep, I took 25 mg of Benadryl every night, per Nancy Klima’s advice.
After a month, the result was just spectacular. I had vitality. Stamina. Endurance. Even though I could see that I had to work to regain strength, I now had “gasoline in my tank” and I could activate myself. I went from having to lie down a lot to being able to walk a little more, more often and for longer distances. And again.
I shared my joy with my GP. Cold shower. She was very worried that the prolonged use of anti-inflammatories could have a dangerous impact on my stomach. She reluctantly agreed to let me continue but in conjunction with a medication that protects the stomach (pantoprazole). She ordered more blood tests and prescribed 250 mg of Naproxen morning and night instead of Motrin so that I only had to take the medication twice a day instead of many times a day. Any small improvement was welcome.
I gained 10 pounds in 6 months. And felt very good. Back to my old new self. Since the pain was never such a big problem, I asked my pharmacist what were the other effects of Naproxen: water and salt retention!!! (NSAIDS also reduce blood vessel constriction.) I believe that it is how I got myself out of the metabolism trap. I drowned the damn thing. Apparently, humans came from the sea. Water and salt. Could it be that simple? Probably not, but it’s a nice fantasy.
I dared to think I was healed. April 2019, tax season was over, and I had worked 19 days in a row. As a treat, my partner and I rented a nice hotel downtown and went to hear Michelle Obama at the huge Bell Center where another 14,998 people had had the same idea. After five minutes in the crowd, the noise and the lights, my body had shrunk, my steps were reduced, my BP was falling, my heart was racing, and anxiety was rising. Once I was able to sit down and put my feet up, I soon recognized the slow recovery process with which I am so familiar.
It has been more than four years now of a very good quality of life. I can work six days a week again if need be. My body tells me if I forget a dose: the pain comes back and if I do not have access to my medication, it does not take long for the curse to come back. I still drink a lot of salted water but not the whole 2.5 liters every day. Probably a minimum of 1.5 liters a day.
Knowing that a crash might be hiding somewhere in the future, I keep a Post-it near my computer screen, a copy of a graffiti I saw in Montreal. Where somebody had written “no hope”, someone else had added a K and a W to transform it to “KnoW hope”.
Epilogue: Recently, my GP implored me to stop the Naproxen. She is worried about long terms effects. “We’ll find something else.“ (Really?) I agreed to try. It has been a month and … I am fine! Even had COVID in that month and … I am fine! I am still drinking salted water, pacing myself, and, mostly, am very grateful.
- More Recovery Stories from Health Rising
- Health Rising’s Orthostatic Intolerance Resource Section contains treatment options, diagnostic help, and more recovery stories.