It took Lucie years, but she finally chanced on a simple and inexpensive solution to her ME/CFS. Four years later, she remains well.
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.
It Begins…
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!
The “Redefining an Illness” report can be downloaded free as a PDF.
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 is ME/CFS’s foremost authority on orthostatic intolerance.
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.
The Gist
- 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.
Recovery
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.
Thank you Lucie. Everything about your story resonates with me. I got M. E when I was 30, I am now 50, and your story was like reading my story. I am off to read more and try your treatment methods. Thankfully I have an incredible GP here in New Zealand. Please could you tell me how much salt to add to a litre of water? Thank you for giving me hope – Melissa
In his document on orthostatic intolerance Peter Rowe recommends increasing salt intake but does not include recommending drinking salt water. While it worked for Lucie some have warned against it. This is what Dr. Rowe wrote in 2017 about increasing salt intake to increase blood volume.
Oral Rehydration solution – since Rowe wrote that oral rehydration solution based on the WHO formula has been found to be more effective than saline.
WHO organization formulated oral rehydration solutions contain the same proportions of potassium and sodium and the same concentration of glucose as blood so that it’s absorbed directly from the stomach into circulation.chronic-fatigue-syndrome/”>Oral rehydration solution as effective as saline
Dr. Cheney also used this homebrew which does include making your own salt water with his patients for years:
Why do you think some say drinking salted water is bad? Seems easier and cheaper than buying tablets or rehydration solution (and how is it different?) Thanks!
I know it’s been used by many but I read a warning against it and while Rowe does recommend taking in a lot more salt he does not recommend salting water in his document. I believe it’s harder on the kidneys.
Dr. Cheney, on the other hand, provided a prescription to make your own salt water (which includes the right amount of potassium) which he used for his ME/CFS patients for years. (He also recommended hydralyte or Gookinaid.)
The WHO-based oral rehydration solutions have the same proportions of potassium, sodium and glucose as the blood so they’re absorbed directly from the stomach into circulation; i.e. more efficient and effective and pretty cost-effective – see the blood volume link in the blog for all of these.
Do folks think Spanx would work for abdominal and thigh compression or do you need something designed for medical purposes? (It’s so easy to waste a lot of money chasing solutions that I’m always hoping to use something I already have!) Either way—not super comfortable/rest-conducive….
I don’t know. I would think so – but others would probably know better.
I use elastic waist binders I buy on Amazon (like for post partum training)
Yes, Dr Rowe mentions Spanx as an option. He has other suggestions too. Any of his lectures on YouTube will have this information.
Hi Cort – the link to the oral rehydration post doesn’t seem to be working – it says “no results found.” Could you re-post? Thanks very much
Fixed and here it is as well – https://www.healthrising.org/blog/2020/09/15/saline-ors-oral-rehydration-pots-chronic-fatigue-syndrome/
Hi Cort, so does Lucie have ME or OH? – Alison
hi Cort, a question about salt and sodium and the oral hydratation. i can not remember when it started but i have nowhigh bloodpressure so i avoid salt and oral hydratation. do not know, to ill, if in oral hydratation and wich one is no salt and if sodium is same as salt. thank you!
A reply to Sarah B – I think wearing Spanx is an inspired idea re abdomen/upper thigh compression. Give it a try – what is there to lose.
I think hydration is vital. But the anti inflammatories and anti histamibnes have to be there.
When I first took black seed oil, my dysautonomia disappeared. It was a miracle!!! I could walk again…this was independent of hydration. Piriton has really helped stabilised my cardio system and increasing water and electrolytes has let me mildly excercise.
In my opinion it needs to be all three.
But the black seed oil is not viable long term unless you wanna clog your arteries so we need thymoquinone isolated and given to us.
Could lactose [in the form of lactulose, which I have to take anyway] be used instead of glucose ?
Hi. You seem to have very similar experience and symptoms. I have done alot of what you have done but may be not as extreme as you! I have not used the compression aids. Can you advise me on what you used (abdomen and thighs)
Thanks
Lisa
I wish it could be that easy. My kids have been on ibuprofen dosing that high without any helpful effect.
Everyone’s attention seems to go to the meds…
Lucie mentions how she satisfied her cravings [the butter on toast]
Rowe mentions salting to taste/craving too
We are biological beings. Our cravings are telling us something. Society teaches us to ignore them [because sugar/salt/fats/calories are evil, etc].
If your body is in a state that it is not capable of making sufficient energy, depriving it of nutrition and the ‘materials’ to make energy… the opposite approach seems more helpful.
i can’t go near glucose.
Hi Melissa, just wondering where in NZ you are…I could do with a GP who’d be supportive & helpful regarding CFS. I’ve had referrals for depression (condition always exacerbated by feeling so drained!) but have had next to no assistance for the chronic fatigue. I sit their talking about how drained I am (almost) all of the time, the tears come because I feel soooo awful and I get a sympathetic look and “let’s renew your meds then….see you in 3 months”
Thanks for sharing!
I find this very interesting because ibuprofen, Ativan, electrolytes, and extra rest are my flare kit survival. The ibuprofen and Ativan decrease the severity and length of my flares! Unfortunately my doctors don’t want me taking these medications daily, because of potential long term risks. I agree with them, but it sucks!
Ibuprofen can also help with excessive prostaglandins caused by MCAS and inflammation. Another potential reason it helps.
I have ME/CFS, hEDS, POTS, MCAS, Idiopathic Small Fiber Neuropathy, Cardiac Preload Failure (iCPET confirmed), and endometriosis. I became sick in my 20s.
I take ibuprofen at night to help sleep but I’m worried that ibuprofen during the day will make me feel better and I’ll be more active as a result (so hard to make myself rest if I’m not wrecked) and this increase my PEM, ie feel worse because of the increased activity. Do you have this problem?
Sarah, about spanx:
When I got diagnosed with vasovagalsyncope (after living with fibro and me/cfs for over 6+ years), I went to our biggest, cleanest thrift store, & bought a handful of very snug lycra workout leggings. This helped. Next I went to a couple of discount retailers, and tried some very snug, firm spanx type garments. These stores – I checked ahead of time- actually accept returns of these garments, with a receipt. So I experimented with a few different kinds and returned those that didn’t help or were too uncomfortable. The really high-waisted ones worked best. Next I went to a _ supermarket_ that had a good selection of the lowest priced elastic bandages I could find. Bought a 4’ wide & a 6’ wide, and wear either one of them sort of at the waist, with or without the spanxish thingies, depending on how I’m doing on a given day. If I’m ever in an accident and an emergency crew has to find out what all these layers are under my sweats, I hope they understand…
My daughter has no problem sleeping, but when she takes Ativan she feels more rested and energised the next day.
My daughter has no trouble sleeping but when she takes Ativan she feels more rested and energised the next day
I also use Ativan from times to times, with Ron Davis’son in mind, M.Dafoe. I read that he uses Ativan when he needs to emerge from his awful state. I always thought that Ativan was for anxiety only. But now I suspect it helps with the “wired” with the famous “tired but wired”.
It has many properties Lucie. I think they’re doing a deep dive on it at present. It seems to be an immune modulator too
Lucie, thank you so, so, much for presenting your inspiring yet realistic story! This is powerful. Even with the given that no one thing works for everyone. Like many of us I’m shifting from no hope to know hope.
Eds is so part of the baseline if this illness. I hope the understanding if tissue type comes to the fire at sone point
i wonder about herbal forms of pain relief/anti-inflammatory and allergy supplements. long term use of motrin scares me.
Have you tried different fruits?
http://raypeat.com/articles/articles/sugar-issues.shtml
Galactose used to be called ‘brain sugar’. You can read about galactosemia to get an idea what the lack of galactose can do to a person.
[Re: your glucose comment further above. No reply button there]
How can you tolerate ibuprofen with MCAS? I cannot tolerate a child’s dose of it or most other medications especially ibuprofen and Benadryl is a no go
Interesting story. Very unrelatable though for me on the severe end with far more complications than that. I’ve done extra salt, WHO formula etc for most of my 22 years. Helps slightly but still housebound and laying down 22+ hours a day. I’d give anything to only be dealing with more mild mecfs.
One thing I thought reading this also, is that ibuprofen at that level will absolutely destroy the gut in a short time. I met several people in the gastro wards who were in their early to mid 20’s getting daily blood transfusions from such severe GI bleeds from too much of it too frequently (probably similar to what she listed here). Incredibly scary thing, it really breaks down the intestinal walls.
I use celebrex infrequently, which really helps and has apparently tremendously less of this effect on the gut.
Hi Chris,
I thought a lot before deciding to have Cort publish my story. Especially because of people like you who are so sick. I did not want to add to the difficult situations many people live by “bragging” about my getting better. But, at the same time, my health improved because I followed the advices of very knowledgeable people who are working to understand this terrible disease. I really hope your turn will come soon.
Hi Lucie. Not trying to diminish your story at all, I know people are all different levels and none of it is acceptable. I actually like seeing when people improve from various things they do 🙂 I just honestly wish I was dealing with something much simpler or less severe than I am, so that I could figure a way out of it too. Thanks but not putting too much hope on it as it’s already been 22 years for me. Been up and down, nearly died a few times, had to save my own life on various occasions, but no answers that help enough to get a life back of any type unfortunately. Happy for you though.
I used anti inflammatory drugs for years because of a knee injury. They destroyed my gut lining. I now avoid them like the plague.
Btw, there have been some studies that seem to show nsaids actually inhibit the possible inner repair of joint and meniscus injuries. So, _another_ reason I’m avoiding them. Besides, they didn’t help my general pain and didn’t seem to prevent flares.
I learned that about NSAID’s and limited my intake, now I don’t take them anymore as I found they exacerbate my fatigue.
Yes, I truly believe we need to work on better entry systems in to the body than the stomach for our meds.
Also ibuprofen is , like you say, a dangerous drug
One of the best days I ever had however , was when I was younger and a girlfriend gave me some left over powerful painkillers from a hospital op she’s had.
I had no idea.
The rest of the day was spent in bliss, no dysautonomia, no fight or flight, just normality. Felt like a kid.
I’d love to know what’s going on in that situation.
I didn’t crash or anything after. In fact I drove to London and partied the whole weekend. ( These were the days when my m.e. was very very mild and I didn’t understand it).
But that feeling of no pain, confidence, love, being at ease with oneself, no dysautonomia, that was all because of a bloody pill!!! Wish the mechanisms could be understood
Hey Oliver, I have found two such days of bliss over the past 11 years, but both times I was on pain relieve, alcohol and sitting in the sun. I remember those days well.
I dont know why I cried so much in this story with a happy ending. Probably in recognition of what it was like to have ‘mild’ ME, all the lying down one has to do during daily life, and cooking a meal in several steps – the things which we try to hide from others so we dont get all the false labels thrown at us by ‘friends’. Fortunately no one ever suggested I do an exercise test as my wonderful doctor never really understood the exertional side of it fully – but I wold have refused the test anyway as they dont know what to measure unless they are looking for ME. I too am hesitantly well now after years of letting go of any vestige of urgency in my whole being, helped also by LDN and an armful of supplements, of which I can never work out what is actually necessary. They give me heaps of energy anyway and I just have to be careful how I interpret that energy – not run with it too much. Thanks so much for sharing your story.
that’s good to hear that you are feeling well. you probably cried because we have to stuff our feelings about our lives/illness most of the time. from “friends” etc. i rejected an exercise test from a cardiologist. they don’t like when we do that. i read that some of us get permanently worse after that test and they already told me i didn’t have a heart conditions that 3 surgeons were able to hear with their stethoscopes before surgery. the doctor retired 3 weeks later. i was so excited about trying ldn but i ran to the computer to google side effects and there was ocd for high doses. i took a tiny dose and that side effect scared the hell out of me. was certainly not going to help fatigue.
I am having terrible trouble sleeping, despite being on medication for this. Any suggestions.
Thank you for sharing your story, Lucie – appreciate your sense of humour through all this! Congrats on your recovery!
I was wondering if you could share which compression wraps you found helpful. The stockings are so uncomfortable.
Thanks!
I recently watched a webinar from the Workwell Foundation. They shared a case study where the woman wore Spanx down to mid thigh for compression.
Thanks, Patrice!
Waiting – re. Compression recommendations… please take a look at my reply to Sarah B. Also, there are specific items designed to be waist compression “garments.” They vary in price and appearance. I actually just found one at Goodwill, still in original packaging, clean, unused, but I haven’t tried it yet. I tried one from Walmart but it was too uncomfortable.
Thanks, ElizabethKay!
Whoops, a typo about using elastic bandages around the waist. I found that the 4 _inch_ wide kind works best for me, and the 6 _inch_ wide kind also works but is 2nd choice. Length… if it’ll wrap around your torso, at or slightly below your waist, and go around a few times, it seems to be good enough. I suspect that if we ever get able to do strength training, then building strong core muscle around the abdomen, glutes and thighs would be ideal.
I mostly use ordinary underwear that go high on my waist,almost to my breast, and down to me knees. I love to wear skirts in summer but without my long underwear the vasodilatation makes me overly tired. Just a little tightness does the job. Sorry guys… because probably most of you will not want to wear a skirt!
Thanks, Lucie!
I could probably spend the rest of my life trying first one and then another ‘thing that worked for someone.’ And not find one that ‘worked’ for me.
This is not the way to go at a major disease, though I am happy for those whose recovery turns out to have – or appear to have – a simple solution.
My hope is reserved for medical research, now being poured (okay, dribbled) into long-covid studies which MIGHT result in some knowledge that helps ME/CFS people, too.
The other method requires that you win the lottery – and I haven’t been that lucky at the lottery, either.
Meanwhile, I write fiction with an ME/CFS main character – because that I actually have some control over. Trying everything in creation is a far worse use of my time.
Alicia, you make a good point. Can’t chase all the options. Just as long as you dont stop believing that healing is possible. Some things can change unexpectedly.
Good luck on finding the winning lottery numbers and i hope your novel is a raging success and made into a movie!!!!
That’s quite true, but I’m afraid you’d be waiting another 30 years for any breakthrough from mainstream medicine. For what I have seen, long COVID research so far has been just repeat of what’s been done with ME for the past 30 years.
Big thumbs up for making a good use of your down time. That’s what I’ve been striving for too. Good luck with your fiction!
That’s very kind of you; the first two in my mainstream trilogy with an ME/CFS main character (of three) have received beautiful reviews – but we haven’t taken off yet. Starting the third one – but I’m abysmally slow (the ME/CFS, y’know), so it’ll probably take a few more years (the first two books together took me twenty-two, so what’s a few more?).
As for a movie? Hmmm. There are a whole bunch of PIECES of movies being made IN the books, but I’m not sure a novel with significant amounts of internal monologue isn’t best left as a book.
Forgot to say: I KNOW healing IS possible, and I trust research BECAUSE the cohort of sick people – which is increasing all the time because people keep thinking the pandemic is over and don’t wear their masks and get sick over and over and risk long covid with each new infection – is HUGE, and the economic impact of those sick people is now, finally, bigger than the cost of research.
And the disbelief from MOST of the medical profession is disappearing – that large a number of sick people having the same or similar symptoms, WORLDWIDE by collusion, and in places where there IS no safety net to provide them with healthcare or FOOD, is now impossible. Anyone who says long covid doesn’t exist just needs to be shaken gently to show where the money trail reaches them. As the psycho-babble people in the UK should find out eventually. It would be like saying the victims died of nothing at all.
So research will do what it does best, keep poking at things they’re now told to believe exist, and they WILL find treatments and cures, as for AIDS and other diseases.
I have no doubt – except to wonder if it will apply to the long-time sick like me, or whether there is a window after which you can do palliative care for the post-viral crowd, but not real treatment which gets us back to work, and no cure. If that window is a couple of years, they better get moving to find something that WILL work – the pandemic started three years ago.
Now I can better understand how gentle swimming in salt water has always made me feel so much better! With pandemic haven’t made it to sea in a few years.
Hi Carla,
Wondering if a good strong salty bath may have some effect….or salt water pool?
(Most people get irritated but i love the scratchy feel of dried salt on my skin!!!!)
I thought “salt” swimming pools were filled with chlorinated water produced by hydrolysis of salt rather than adding chlorine directly?? That’s what happens with our friend’s “salt “ pool. ( But near the ocean there are some real salt water pools which use sea water. )And I can’t take much chlorinated water!
My skin is very dry, partly genetically and partly from the CFS so soaking in a tub is only a rare pleasure . I would imagine that soaking in warm water could be very relaxing which certainly can help CFS.
Would you consider adding a few of handfuls of Epsom salts and a handful or two of baking soda to a warm bath, and soaking? My (now retired) doctor recommended this. She also said that the skin needs more than 20 minutes to start taking in the salts… so … 45 minutes of hanging out in the bath or more? This can help, especially on a regular basis. I did it daily for a while. We even rigged up a trick to add warm water to keep the temperature warm. Meanwhile I found that if the bath is really hot, this advice backfires (Geez, should’ve known this ahead of time!). As you can guess, a warm soak calls for being really careful getting out of that bath — play it extra safe and be ready to immediately lie down. After that, get up gradually. Of course.
Thank you for suggestion.
there is also overheating therapy. when i feel virusy i take a long epsom bath and i feel so much better.
I was a very average sports girl in everything except for artistic swimming. I can’t explain but it seems like some basic physics, something with being surrounded by a force stronger than just air, that gives me the extra pressure.
Are you in Montreal Lucie?
Carla, yes I live in Montreal
Lucie’s sense of humor and lovely manner are a pleasure to read. I was struck by her mention of her mother’s tuberculosis. I too had TB which is now dormant, and seems the likeliest initial disruptor to my immune system. I contracted it while living in Iran. I wonder how many other ME patients have a history of TB or other weird diseases from 3rd world countries? I became ill with ME in 1985 – lived on the west slope of the Sierra in California.
I had a bad reaction to BCG vaccine (local reaction at needle site) at age 20.
Had positive TB test for years – and attributed it to being vaccinated. But then a Dr told me after 10 years this is not possible and I must have a latent infection. I always wondered if there is any relevance to my immune system issues
To Julie and others who kindly replied to my comment about TB…The connection makes sense in my case, and my doctor agrees, but that doesn’t really lead anywhere since treating the TB at this point is impossible and downright dangerous, many ‘treatments’ suggested for ME are immune suppressing drugs that cannot be taken by someone with latent TB. All I can do it day to day care like everyone else.
I couldn’t have the tb vaccine in school because of positive skin test (England
, was 15 and not well travelled) never even considered it as a trigger. My me/cfd came after hodgkins lymphoma which can also be triggered by… Epstein Barr virus
I know someone in the UK who had it from his Mom he was early 30s, and they treated him aggressively with antibiotics he is fully well now. He never had ME/CFS
Dear Jane, Thank you for mentioning the connection to TB. I have been diagnosed with bronchiectasis which is similar to TB and it is the cross I carry, especially when I was so sick with Covid for 16 months, praying to die every day. Doctors have never helped me, but this site has been so helpful and uplifting. I did’t connect all the dehydration to ME/CFS, and my doctors are clueless and don’t care. I would so love to see any king of doctor who might help. Thank you for mentioning your connection to TB. ANd yes, my biologist husband traveled all around the planet to obscure places with pathogens all over the place.
Susan, where are you, Canada,U.S., … or other? Where have you looked to find a Dr. to help you? I wish we could all find medical professionals who would work with us, as to Covid, lung, & ME/CFS issues. But for now, maybe someone who visits this blog could help you find someone.
In the process of figuring out this disease I got tested for latent TB and it is not in my system. I also explained my mother’s kidney tuberculosis to a specialist, another one, and he was sure that it was Addison’s disease. Another dead-end.
I am curious about the Benadryl at night. I have avoided using it regularly (as have my doctors) due to concerns about it worsening my cognitive issues. But when I have taken it in the past it has helped me sleep better than just about anything else.
Try trazodone. I took Benadryl for many years. It gave me RLS and the anticholinergic effects were bad as well I was up to 75 mg at night. I knew that I had to stop. I took trazodone decades ago for depression and I remembered how drowsy it made me. 150 mg 20 minutes before bed was the amount it took for me. At this low dose as a bonus it has a mild antidepressant effect.
Hi Roberta, I don’t know that 150 mg can be considered a low dose. Trazadone – 50 mg – was added to my sleep regime as it helps the body stay asleep. Zopiclone puts the body to sleep, but many people wake up at around 3-4am. Trazadone stopped the midnight wakes. I also take Progesteron which was added about five years ago and further helped me sleep. Apparently you also have to take Estrogen to balance out the Progesteron, but I have no chance of urterine and little chance for breast cancer, so my ND and I decided to try it. I can finally sleep after @ 10 years of living a sleep-deprived nightmare. Please note I am not recommending this combination, you must first see a ND who knows a lot about fatigue related illnesses and it so happened that my ND did (Victoria based).
Therapeutic dose of Trazodone for depression is 300+mg. I have tried 75-150mg. My optimum dosage is 150mg. Just keep away from the anticholinergics medicine like diphenhydramine as long term use will affect your cognitive abilities. Some people much worse than others.
I get the 150mg trazodone at Walmart for $10 for 90 days. The tablets are tri-scored so you can select the appropriate dosage for you. Having CFS/ME high quality consistent sleep is a very high priority for me.
It’s been pointed out to me that it can also be a analog for Viagra for some people.
I am always on the hunt for new ways to treat my chronic fatigue
Same here! I wonder… does, and why does, benedryl seem to affect cognitive issues for some of us but not others? Is anybody out there taking benedryl yet you have few or no signs of “benedryl brain drain”?
I’ve started experimenting with a 1/3, 1/2, or 1/4 dose of benedryl at night… also experimenting taking such a fractional dose combined with melatonin and 0.125 g clonazepam. It’s high time to keep a log of this because as they say: the proof is in the pu… ahem, the tracking.
DEar Elizabeth, Thank you for kindly inquiring where I live. I am in a suburb of Portland, Oregon, and after a life of being a teacher, I now live upon social security and have zero money for hunting around for a doctors or paying them. So I’m dealing with rock bottom quality of health care, trying to pretend it is adequate when it is not. I am financially trapped with high rent costs and very little income, no family close by for 2500 miles, etc. So, each day is a challenge with this rapacious sense of drowning inside and all the pain. But I was raised in an optimistic family and I just try to remember their irrepressible humor and laughter when I’m in the worst of it, which is every single day. Many blessings to you for writing me back. Susan
Dear Suzan,
So sorry to read about your difficult situation. At least, in our ME community, we all believe each other and do not have to hide the level of despair it often brings. I hope you find some comfort knowing you are not alone.
benadryl never made me sleep and made me feel very strange.
Interesting and intriguing. And frustrating. It seems clear that none of the options we learn of ever work for everyone.
Love everything about this post! I completely relate to the content.
I started wearing compression tights and hopping in and out of the spa about 5 times a day when I experienced my first episode. I couldn’t get warm and lost so much weight and body tone.
Interestingly I fluked increasing my salt intake because I was trying to resolve constant muscle cramps. My grandfather (a physician), used to add salt to potato chips! He was constantly complaining of leg cramps.
I’m one of the lucky ones, who now lives quite well with ME/CFS, but also know that hip pain is the first sign of a flare. I avoid standing in a queue and always look for ways to elevate my feet if I have to go out to any event.
And – don’t get me started on visiting hot climates. I just thought it was my Scottish heritage. I much prefer to be in colder climates, where I can layer up. The heat always makes me feel worse.
(Cort Johnson – love your work in sharing content for us all).
I live in a warm/hot climate and have nearly all of my life. Everyone (but me) just loves it, but I find it oppressive and debilitating. Looking back, the first time I had problems with hydration was at summer camp. I fell out of my bed after having ‘spins’ during the night. Salt tablets for the rest of the week.
Yeah, anti-inflammation therapy may help for mild cases by lowering the floor of the envelope. My guess is that lowing the floor a little won’t make much difference for moderate to severe cases because their ceiling is so low due to hyper-sensitivity to exertion/inflammation. Perhaps other patients who tried it could chime in and let us know.
TK, I don’t understand what floor and ceiling refer to. Nor the envelope.
Lucie, it’s a reference to “energy envelope”. The ceiling in my analogy is the PEM threshold. The floor is the base inflammation. You add exercise-induced inflammation on the top of it, and you end up hitting the ceiling. What I said was that, if you lower the base inflammation with naproxen, you could have more room before hitting the ceiling, therefore have more energy.
(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”.)
Well, yeah. That describes me.
(No exclamation point because I have CFS)
TK, your comment summed it perfectly. Thanks.
This article tonight was very helpful and encouraging. Thank you so much, Cort. You have changed and improved the destiny of every one of us.
I have certainly found ibuprofen very helpful at times. Not surprising since This is an inflammatory illness.
Curcumin, too.
thats exactly what is
raging cytokines,,,,consistent and persistant inflammation.
Dear Susan,
I assume this is the same Susan Miller who wrote the earlier post.
I am grateful that this site has made such a difference. And am grateful that you did not die of Covid. But sorry for all those many months when you wanted to.
I am so sorry about all you are going through.
I know well how it feels, in my case being all alone, about 90% bed bound, living on Social Security. In my case, my family has passed away except for a brother whose wife just passed away & he is a single Dad now but has cancer. Luckily I have a married neighbor, who goes to my church, who I pay very little, who is my savior … helping me 6 days a week, cheering me up.
I will — as Quakers say –“hold you in the Light.”
Please just ignore the P.S. of this email …. it is a natural inclination to want to help, but usually a total stranger’s ideas are not appropriate at all, have already been thought of if they are, and/or, are not possible b/c of other contextual info not shared. No need to write me back to say this.
My love to you, Susan,
Alden Lancaster
P.S. I assume you have a ME/CFS association to turn to for cost-savings ideas and doctors that DO listen & help, & friendship, etc.
And that you know about the Facebook group for the 25% most ill ME/CFS folks … which gives warm, caring feedback.
I wonder if your family situation is different from mine? Whether returning 2500 miles away to optimistic family members might help? I am sure you have thought of this, and moving — for someone with ME/CFS — feels overwhelmingly impossible. But if any family member cares & could come out to help you survive by doing this … & the other family members could help you in the other needed ways — e.g., to live with them initially, find a stable group household (for company) or less high rent apartment, find a GP who knows ME/CFs, etc. … and there is a chance you could receive financial help (I realize none of this usually at all likely), … but if it were … would it be worth at least asking?
.
What a great story of hope!
Might I ask for your symptoms, did you ever experience shortness of breath during PEM?
Or what were your PEM symptoms?
Thanks a lot
I don’t recall shortness of breath during PEM . But certainly walking too fast, meaning faster than very slow, I get out of breath quickly. I then adjust my pace immediately to not experience any shortness of breath, because it is a sign that I am over my threshold.
Thanks a lot for your answer. I have long covid and my main symptom is getting out of breath and then my heart rate goes up (not ridicously much) when it increases to much. Sometimes I get chest pains. I get a PEM crash if I push through.
I dont get any increase in symptoms while standing so I dont think POTS is applicable for me. I ll guess I ll have to search further.
@Lucie,
i am concerned about the word Recovery. a googled definition of recovery said:
“a return to a normal state of health, mind, or strength.”
My concern is that you have not been ‘cured’ in a return to ‘normal.’
This disease still affects you, though you have found ways that improved your health. I think it is important for patients, as well as healthy readers, to realize you have not found a cure for even yourself. That you still have ME. ME hasn’t left. But instead you are ‘managing’ ME.
sincerely, sunie
For Sunie: Recovery is the title used by Cort for all the stories presented on Health Rising. I live with ME, I have the marvellous chance to be able to manage it and I expect it to be my companion until I die.
Lucie,
i too find that breathing increases when I am doing too much. The Workwell Foundation cite it as a first symptom of PEM in their Resources.https://workwellfoundation.org/wp-content/uploads/2020/03/WW-PEM-Timecourse.pdf
If I were wearing a heart rate monitor at the time, I’m sure I would see a correlation between them.
I’m interested to hear that you are so much better but are still being careful with staying underneath your threshold. May you continue to improve.
Many congratulations on your improvement and on sharing all this with Cort and ourselves. This certainly gives me encouragement. Blessings!
Hi Suella, I wish that before undergoing extensive/expensive investigations, our MD’s would lend the patients a heart rate monitor, for education. Same way as they provide a Doppler device, a blood pressure device, etc. for a few days. I have often contemplated buying “something” (Fitbit, Oura ring , whatever) but financial considerations combined with limited knowledge to how actually use the information it could provide, has stopped me many times. Like the little wheels on a bike – useful for a child to learn- may be let go at some point, I think we can be trained to recognize the symptoms of over-doing it without having to constantly rely on a device. Of course, I am only an anecdote in our ME/CSF constellation.
Hi Melissa, I prepare 2.5 liters of water with 15ml of salt. Very happy that you recognized yourself in my story. And I in yours, even though I don’t have the details!
Lucie,
You are so right. Learning to listen to our bodies with both our intuition and other devices is vital to prevent us accidentally making the same push/crash mistake over and over again. There are inexpensive devices out there, not designed for ME/CFS patients, but do the job never the less.
I learned my pacing with Bruce Campbell and Dr. Charles Lapp’s websire http://www.cfsselfhelp.org. on it they have a Free Pacing tutorial.http://www.cfsselfhelp.org/pacing-tutorial, as well as group classes introductory and ongoing classes. in the Free Library of hundreds of articles there are at least two in particular which you might find useful. These are written by fellow patients on the CFSelfHelp course or Bruce Campbell himself who used these techniques to recover encough to return to hiking 17 miles. Cort will have mentioned him more than once in his wonderful blog.
Th heart rate monitor I purchased was $40 some little time ago. It was a basic sports model by Polar with a chest strap and wrist monitor. It was very helpful to show me when my pulse rate was elevated above my resting heart rate. Two articles that have helped me to understand and use a monitor accurately for ME/CFS are:
https://workwellfoundation.org/wp-content/uploads/2021/03/HRM-Factsheet.pdf
https://phoenixrising.me/myalgic-encephalomyelitis-chronic-fatigue-syndrome/the-consult-part-ii-of-the-heart-rate-based-exerciseactivity-management-video-series-with-dr-klimas-on-me-cfs-community-com/
Thanks Suella, A lot of reading in perspective! Even though I already read Bruce Campbell’s story, I will read it again. There is so much information to absorb, digest and then use properly!
Lucie, happy to talk more should you be interested. Cort has my email address. I won’t be at all offended should I have given you more than enough links. Thanks so much for sharing.
Hi Lucie, I grew up in the Montreal area NDG. Do you mix the salt into your water bottle daily the 15ml. What type of salt are you using table or Celtic sea salt.
I avoid Pink salt I heard it is loaded with lead & also has amounts of radiation. thanks, I am glad you are feeling better now
Hi Aidan,
Yes, I prepare my “cocktail” daily. I find it is important to see what is left at lunch time… pacing the drinking is an art ! If by one o’clock I did not yet drink a third of my jug, I know I might not make it for that specific day. I use regular table salt.
The danger in publishing a story like this is that some patients will try this protocol because Benadryl and Motrin or Advil are over-the-counter medications and easily accessible.
I came close to having a stroke or losing my vision (which still may happen) when allergists used very tiny doses of two antihistamines, Tagamet and Singulair to test for mast cell disorder. These medications triggered narrow angle glaucoma which an ophthalmologist tried to resolve with laser surgery. Unfortunately, something in these processes caused the artery behind my eye to rupture and attach to the vein behind my eye. This medical emergency resulted in a four hour brain operation where the radio-neurologist separated the artery and vein with platinum coils.
I had double vision in my left eye for two months and now I am left with glaucoma (a leading cause of blindness) and the possibility the artery rupture can recur.
On to Advil. I discovered on my own that a single Advil tablet could greatly improve my sleep. I took this med for a year or more until I noticed my right kidney was hurting. Advil and Motrin can cause serious kidney problems in high or at prolonged lower doses.
I have had four bouts of extreme kidney pain and vomiting since January. I won’t know what this means until my next blood tests come back.
All medications can have positive and/or negative effects in some people depending on their genetics, metabolism and ability to detoxify (which is impaired in many ME/CFS patients.
Betty, I am so sorry about your eye problems. These problems are big, scary and life changing, and shame on the meds and treatments.
It seems amazing that eye problems are not very commonly linked to our me-cfs-OI issues. Or are they?
I have eye problems too, slightly different and probably due to slightly different triggers. (Hypotension, low hydration at times, hypoglycemia, and maybe clonazepam.) Are there ways to get personalized, helpful information as to one’s genetics, metabolism, and detox abilities that will help with the risky kidney and medication problems?
And I’m so sorry about your kidney problems.Again, as you’ve unfortunately had to find out, it’s serious. Btw in traditional Chinese medicine there is a close association between the eyes and the kidneys for some reason.
After my scary eye problems, I wrote to Dr. Paul Cheney who replied that a number of the first people affected by ME/CFS (or whatever this is) in the Incline Village outbreak had high eye pressure. The problem, as I see it, is that ME/CFS research is so fragmented and so focused on PEM alone, that other important clues to what this may be are missed; i.e. the missing fingerprints and crimson crescents that Dr. Cheney observed. On the susceptibility issue, one of the tests Dr. Cheney ran showed that I had low glutathione levels that could affect how my body could process other exposures to medications and chemicals.
I think a simple self-test for chemical susceptibility could be: have you become sensitive to perfumes and colognes (or other chemicals) since you got sick? Have you become alcohol intolerant?
I run a national birth defect research project that investigates these issues related to why some exposures cause birth defects in some babies and not others. http://www.birthdefects.org
i was on enormous doses of ibuprofen for endometriosis before it was over the counter. luckily i was able to make it go away somehow and don’t have much pain. this is important for people to know. then there are some meds that are hard on the liver. i felt the results of that.
Hi Donna, I am sorry to hear about your terrible problems with endometriosis. You are right about other pain meds. Acetaminophen can have serious effects on the liver.
Lucie’s account could have been written by me…..except when it came to the part where she saw specialists. That’s unaffordable for many, including me. I see stories like this often here; the physician who healed himself actually got to see colleagues in various specialities. I live on disability now, having also fallen ill at age 52; after having been rollerblading a few days before my first episode/flare of M.E. I happened upon a GP who was informally considered the town’s expert on fibro/M.E.. I did not mention during our first appointment that I knew what I had (self-diagnosed, like so many), and after an hour long appt, she said, with the disclaimer that I would need some further examination and tests, that she believed I had M.E.. Bingo! I told her I knew I did! I was very fortunate to find her after just four years of suffering. Many go decades without an answer.
In addition, I suddenly lost my ability to do my acount management work. Lost most powers of concentration and focus. I loved my work; it was satisfying and paid well. Like many, I’ve had to resort to food banks and other forms of assistance. Many of us have no in-home help, physically or monetarily. I prefer living alone, but it now is hard on one low income. I still do welcome challenges, but my mind can do a lot more than my body.
I haven’t been drinking a salt solution but may try it. I do have bouts of OI, but no tachycardia. Anxiety can be through the roof at times, and I do sometimes wear my sunglasses in brightly iighted rooms. Lucie is more sociable than I, but I do miss going to events and being able to tolerate a couple hours in a venue or a smaller group.
Very glad for Lucie, but I am certain her answers wouldn’t work for everyone.
I live in Canada. I did not pay one penny to consult so many specialists. I realize my chance.
Hi Lucie,
I realized you are in Canada. I have many friends there; Toronto, and in NS and BC…..all need to see a variety of specialists and are on long waiting lists, months or sometimes years long. I’m sorry I assumed you were seeing private pay providers. I’m just glad you are doing better.
I always enjoy hearing about others’ healing journeys and this one describes fairly well my first 25 years with dysautonomia (o.k.a. POTS). Though I continue to keep a high salt/electrolyte regimen, the first time I actually saw improvement of my POTS symptoms was when I began using ivermectin earlier this year. However, my ears perked-up when I read the healing testimony from the nutritionist, Mary Ruddick (https://www.enableyourhealing.com/). She had a quite severe case of dyautonomia for 12 years and is now symptom-free after practicing her protocol. Past of that protocol was treating and healing her gut by using the GAPS diet developed by Dr. Steven Gundry. This amazing diet is well researched and effective in treating a variety of inflammatory gut conditions including autoimmune disorders, like dysautonomia. Just a month ago I began to slowly remove the high lectin food from diet, which Dr. Gundry recommends and I must say I have seen improvement in my skin and constitution beginning after only one week. It’s a challenging diet removing high lectin foods since they are the mainstay of the American diet (corn, wheat, soy etc.) and Ms. Ruddick says it took a full year for her to be healed and become ambulatory again. But in my case it shouldn’t take so long since I had already achieved a partial remission. I only wish I discovered this diet 30 years ago..
My symptoms also drastically improved by removing most lectins. I have nearly eliminated my “awful” days of debilitation. I also follow the Wahls protocol, for autoimmune diseases. I highly recommend trying this diet (by Dr Wahls) but tweaking it to eliminate additional foods discussed by Gundry that are included in the Wahls diet (seeds and all nightshades for example). The Wahls protocol is designed to boost your mitochondria.
Gluten-free is a ruse, and you really have to get rid of all lectins, which is corn and all grains that substitute for wheat.
I resisted doing an elimination diet for decades, and wish I had seriously limited my diet earlier. I was a vegetarian literally killing myself with a “healthy” legume based diet.
FWIW, it has been published that colostrum neutralizes the destructive effects of NSAIDS on the GI tract.
Thanks for highlighting that MD’s are pretty much useless! And I am so, so sorry in this day and age people with CFS are being told “you are just depressed…”
Here’s a trick I learned from a hospital social worker. If you want to try a new treatment plan, say, increasing your thyroid replacement meds, tell your (ignorant) MD, “I was on a higher dose many years and did very well…”
Telling a doctor that you already tried a treatment/RX that you wish to try, is the magic doorway to getting an MD to do what you want. They feel off the hook legally. And they don’t think it is the patient’s idea, which bruises the fragile Doctor-is-God ego.
Of course, make sure there are no contraindications with adding new meds, but since checking this is easily done on a cell phone using a database, your Doctor will do this automatically since it doesn’t require any intelligence or problem solving skills.
Just an aside for Ativan users, do not take benzodiazepine drugs for any extended period of time. So many doctors improperly prescribe this highly addictive medication! It is ONLY for very temporary use. Physical dependence can happen in just weeks.
A great memoir on their lifelong damage to mental and physical health was published recently, Blood Orange Night, by Melissa Bond
Just wanted to say that orthostatic intolerance doesn’t always show up in BP and HR responses during a tilt table test.
https://www.brighamhealthonamission.org/2019/06/03/expanded-autonomic-testing-helps-to-pinpoint-causes-of-orthostatic-intolerance/
Dr Peter Novak in the US has done a lot of good research in this area in recent years.
Any autonomic specialist worth their salt (no pun intended) should be aware that a normal TTT does not rule out autonomic dysfunction in the form of OI.
Yes, indeed!
https://www.healthrising.org/blog/2021/12/26/brain-blood-flows-long-covid-me-cfs-pots/
”The often-cited advice that people should drink eight glasses of water a day may be too high, scientists have said.
Research now suggests that two litres of liquid a day, or eight 250ml glasses, is often more than is needed by people who live in temperate climates.
The authors of the study estimate that many adults need to drink only about 1.5 to 1.8 litres a day, about six or seven glasses. The new estimate takes into account that about half our total daily intake of water comes from food(…)
https://www.thetimes.co.uk/article/25ecc6a4-6c22-11ed-8143-e644f9e96fa0?shareToken=c70c6de940579a275c9f83d37f2f889d&utm_source=pocket_saves
”A high salt diet will alter this sodium balance, causing the kidneys to have reduced function and remove less water resulting in higher blood pressure. This puts strain on the kidneys and can lead to kidney disease(…)
https://www.actiononsalt.org.uk/salthealth/salt-and-the-kidneys/#:~:text=A%20high%20salt%20diet%20will,can%20lead%20to%20kidney%20disease.
Everyone’s attention seems to go to the meds…
Lucie mentions how she satisfied her cravings [the butter on toast]
Rowe mentions salting to taste/craving too
We are biological beings. Our cravings are telling us something. Society teaches us to ignore them [because sugar/salt/fats/calories are evil, etc].
If your body is in a state that it is not capable of making sufficient energy, depriving it of nutrition and the ‘materials’ to make energy is alittle nutty.
Providing your body with sufficient food and nutrients = one of the pillars of recovery.
It might entail for one to investigate what this truly means.
GAPS (Gut and Psychology Syndrome) by Dr. Natasha Campbell-McBride, MD
based on the SCD developed and tested and improved in the 20th Century
Quoting research on a general populations concerning salt and water intake is not helpful to people with ME/CFS or various forms of OI. Dr. Nancy Klimas reports that these populations are dealing with non-normal dehydration which runs these patients consistently low on body fluids. Cort has published sound information from the WHO concerning rehydration salts and why a balance of minerals and the proper form of sugar to transport these minerals will be the most effective method to address dehydration. A symptom of dehydration is constantly dry lips.
I often joke about my five o’clock medication: a beer and a bowl,of chips! I think the ratio salt:sugar is perfect for me! Or for ME ? 🙂
Lucie, you say you took Benadryl as a sleep aid. How much would you say that improved sleep quality contributed to your recovery?
Hi, I now take 12.5 mg every night. I also suffer from mild allergies and would have to take other kind of anti-histaminics anyway. Dr Nancy Klimas explained something about 1st generation of anti-histaminic (Benadryl) versus 2nd generation (Reactin, etc). Some nights I wake up a few times, and some I sleep right through. Not sure how much influence the Benadryl has, because I never do without!
Dr. Jacob Teitelbaum told me to salt my water years ago, and when tested my salt levels were still low so now I use sea salt on everything. I never drink enough water and this story from Lucie will encourage me to drink more .
I wanted to mention something to see if others have had the same. After the vaccine I developed MCAS and severe food allergies to everything except vegetables , seeds, and macadamia nuts and some apples. I had to be on H1 and H2 meds, for me what worked to stop the histamine reactions was : 50 mg of hydroxyzine and 1 pepsid at dinner. I noticed an IMMEDIATE increase in stamina. I don’t like being on the meds, but I can now walk my dog ten times as far as before. Granted, the most I can do is 1/4 mile with lots of stops at benches at the park, but before it was 30 steps, so it seems incredible to me. If I do that much, the next day I am pretty wiped out BUT, the following day I am back at it. So there is something about the antihistamines that is helping. There is one study I found where they tested it on Long Covid patients after other patients discovered it after taking them for other reasons, like I did. Hope they do a study on ME patients also, just one more thing for people to try…
What was the alternative to Naproxen that she apparently switched to and tolerated?
Hi Laura, there was no alternative to Naproxen. First I had used Motrin and then switched to Naproxen and stayed on it for about four years.
Merci Lucie de partager! It’s always refreshing to hear positive experiences. Since reading your story, I started reading many books and watching many YouTube on the subject of dehydration. I am a 52 year-old female from NB, Canada. Adding salt and electrolytes, has helped me immensely. I have a very similar story with MECFS, PoTS, hypertension, connective tissues issues (pain), etc. and use a very similar protocol to manage (plus Ativan, LDN.) At the end of the day, I feel salt and dehydration has had an impact in the early stages of my illness. Personally, I treat my illness as if I’m having a chronic heat stroke. I had Covid in July 2022, took ibuprofen (a vasoconstrictor), anti-histamines, alot of salty water and electrolytes and recovered quite well. Let me share with you education I found fascinating:
-YouTube Barbara O’Neill titled SALT AND WATER.
-Books “The Salt Fix” by Dr. James DiNicolantonio, “Your body’s many cry for water’ and “You’re not sick, you’re thirsty” by Dr. Fereydoon Batmanghelidj.
Thank you and Cort for the uplifting story.
Merci Manon, you gave me a brand new list of things to read ! Chronic heat stroke: interesting concept, I will get myself educated on that concept.
I also strongly recommend the you tube by the Bateman Horne center « managing OI » by Dr Yellmann.
Hi is anyone trying traditional Chinese acupuncture or electro acupuncture ? It follows a diagnostic formula to look at what is out of balance in the body and just wondered if anyone had tried it for your conditions?
Bonjour Lucie, je suis Stéphane et je suis atteint du syndrome . je suis également de Montréal serait il possible de vous parler quelques minutes svp ? merci beaucoup.
Bonjour Stéphane,
J’ai demandé à Cort et j’attends sa réponse.
Bonjour Lucie. merci .
voici mon couriel si c’est plus facile pour vous.
stephanedeslauriers@hotmail.com
Bonjour Lucie. merci .
voici mon couriel si c’est plus facile pour vous.
stephanedeslauriers@hotmail.com
Merci beaucoup Lucie,
voici mon adresse couriel si jamais.
stephanedeslauriers@hotmail.com
Wanted to also mention they use salt water increase at times to look for spinal fluid leaks on testing images, so if someone is helped by salt water increases the likeliness is they are leaking from spinal areas. So something to think about & some need surgery to fix the damage as patches do not always do the trick
Thank u ! Thank u! Some place to start, these are things I can control! I got all that in my medicine cabinet! Oh could it be so simple!?!
Hi Candy,
Since I wrote my story, my energy diminished and i have had to try something new: Midodrine has been extremely helpful.
Thank you Lucie for sharing your improvement experience and 3/11/24 update is very helpful. Ebb and flow is hard to manage, recognize, and acknowledge.
For me, 800mg of ibuprofen anti-inflammatory in each dose helps my energy enormously. My main issues are that, as well as the danger to my stomach, it makes my dry eyes much worse. I usually only take 2 x 800mg in one day and then only every other day because of the dry eyes issue. I haven’t discussed this with my doctor yet, but will do so soon.
I have been avoiding excessive salt because my kidneys aren’t doing as well as they used to (I am almost 63) but my issue with being upright is more about muscle fatigue rather than OI. I sometimes use bicarbonate of soda, thinking it may help my muscles if I have been active, but now I have read this, maybe it is the sodium in the bicarb that’s making me feel a bit better!