Geoff’s Narrations
The Blog
The GIST
Who says long duration patients can’t recover?
Health Rising’s recent Recovery/Recovering Series continues with – you guessed it – something entirely different. From Efthymio’s artificial intelligence aided recovery story, to vaccine, drug (rapamycin), neuroplasticity + alternative health, cerebral spinal fluid patch, mast cell + recoveries – it goes on and on – the theme has been the many different ways people can recover from these illnesses. Indeed, Flo’s story is different in several ways – the length of her illness (almost 40 years) and the way she finally ended it.
Flo’s ME/CFS story started with a moldy house, and 37 years later, it ended with a full recovery. Over that time, she experienced many health setbacks and challenges, and when her recovery happened, it came with a surprise. Who could have predicted that a mold-triggered illness journey that included stage 2 cancer of the bladder, severe back problems, a bout with a nasty intracellular pathogen would have ended with a complete recovery? Flo chronicled her health journey in her memoir, “There’s a Leak in My Boat: The Challenges and Gifts of My Journey Through Chronic Illness“.
THE GIST
- Check out Geoff’s narration of the GIST at the top of the blog
- From Efthymio’s artificial intelligence aided recovery story, to vaccine, drug (rapamycin), neuroplasticity + alternative health, cerebral spinal fluid patch, mast cell + recoveries – it goes on and on – the theme has been the many different ways people can recover from these illnesses. Indeed, Flo’s story is different in several ways – the length of her illness (almost 40 years) and the way she finally ended it.
- Flo chronicled her health journey in a remarkable book, “There’s a Leak in My Boat: The Challenges and Gifts of My Journey Through Chronic Illness“.
- In truth, Flo’s health was troubled from the beginning. Battles with an abusive father, frequent and often long lasting infections, and migraines marked her childhood. A difficult pregnancy and a more difficult post-pregnancy that included undiagnosed post-partum depression (PPD) worsened her migraines. A serious low back injury and hip bursitis added more hits.
- Wanting to lose some weight, she joined a gym, blew her back out the first day, and was out of work for a month. Then one of those weird but life-changing events occurred: she tested positive for tuberculosis and was put on a strong tuberculosis drug that sent her health and life into a tailspin. (She did not actually have TB).
- Then she finally had a success: a year-long course of craniosacral therapy (CST) in 2002 left her migraines mostly in the past and gave her hope for healing her other ailments. “Craniosacral therapy”, she said, “threw me a life preserver!”
- Her experiences with “Heart Centered Therapy” helped calm her nervous system down and allowed her to reconcile her feelings regarding her abusive father. Plasma rich platelet (PRP) injections helped with her back pain, yet her health still continued to decline.
- Suspecting an infection was involved, her naturopath tried the “nuclear option” – hydrogen peroxide IVs – and they worked! Flo reported, “The difference in my level of pain and energy was nothing short of miraculous. I was overjoyed and excited about the future…and getting stronger and more fit as the weeks and months went by.”
- She and her husband even went on a cruise, but by the end of the cruise, she was back to square one – and with her veins shot – she couldn’t tolerate any more IVs.
- Finding evidence of a chlamydia pneumoniae infection, she went on a course of antibiotics which slowly but surely worsened her health. She wrote that the “pain, anxiety, and sleeplessness were brutal”. Now she had trouble tolerating lights, sounds, sometimes couldn’t handle watching the TV, had trouble reading and following conversations, and was regularly experiencing vertigo. She wrote it felt like she “had a lightning storm in my pressurized head”.
- Next came a diagnosis that made sense to her – mold illness. The rigid Shoemaker regimen her doctors prescribed, though, weakened her further. Finally, she felt she was done – with everything. She wasn’t going to commit suicide, but she was calm and ready to exit when the time came – and it looked like it was coming.
- Her daughter’s pregnancy, though, proved to be a remarkable gift. The budding appearance of her first grandchild changed things and ultimately led to her recovery. Now she had something to look forward to. She remarked, “Nothing in my life had changed one iota, except my attitude and belief that it was worth going on. And that would lead me to a series of steps and choices that not only helped me heal my brain but also a mountain of baggage and trauma that I’d carried all my life.”
- She sought out a meditation/mindfulness class and achieved some peace there. Next came the breakthrough that changed her health and her life – the Emotional Freedom Technique (EFT) – which involves tapping on Chinese meridian points.
- When asked by the instructor to tap while examining if some core beliefs she had were true – she had a breakthrough as she experienced “feelings of immense gratitude” and felt “a huge whoosh of energy” fill her body. With the heavy weight of the limiting belief gone, she felt exhilarated and happy.
- It took much more work over time, but by using something called Conscious EFT, Flo slowly deactivated her sympathetic nervous system (fight/flight) and activated her parasympathetic nervous system (rest and digest). In turn, that bulked up her immune system, allowing it to take care of the pathogens that had wreaked havoc on her.
- It had been a long journey, indeed, with a surprising ending. Flo reported that, “Although I still have some back and joint issues, I am a happy woman with passion and purpose and SO grateful for the quality of life that has been good since 2019 — even through COVID.”
In truth, Flo’s health had been an issue since birth. Looking back, one can see a storm gathering that ultimately resulted in a complete breakdown of her health (chronic fatigue syndrome (ME/CFS)). Plagued by a variety of frequent and long-lasting infections (throat, sinus, kidney, and bladder) as a child and adult, and migraines, and battling an abusive and violent father, she got loaded up early with a basketful of “adverse childhood events” that have been shown to increase the prevalence of many chronic illnesses. With her sister coming down with fibromyalgia and depression, she was probably genetically not in great shape either. (Her sister died at an early age.)
A difficult pregnancy and a more difficult post-pregnancy that included undiagnosed post-partum depression (PPD) worsened her migraines. A serious low back injury and hip bursitis added more hits. Typically, Flo turned her pregnancy experience into something useful and became a lactation practitioner.
Eying her sister’s poor experience with drugs and her FM, she turned to naturopathic medicine early. On the relationship side, a successful experience with Worldwide Marriage Encounter not only turned her marriage around but led her and her husband to become leaders in that community.
Flo’s memoir chronicles her attempts to recover.
Still, her health issues continued to mount. Wanting to lose some weight, she joined a gym, blew her back out the first day, and was out of work for a month. Then one of those weird but life-changing events occurred: she tested positive for tuberculosis. Even though her chest x-rays were clear and there was only a low likelihood that she actually had TB, she was working with pregnant mothers and that called for a course of a strong drug called Isoniazid. The drug sent her health into a tailspin and she had to take a leave of absence. She wrote:
“I could no longer work, think, listen well, or even follow a conversation. I had vertigo and brain fog, light and sound sensitivity, lost my hand-eye coordination and my balance, and hurt all over my body — so very little restorative sleep.”
Despite quitting the drug after six weeks, the damage was done. A six-month leave of absence didn’t help and she left her job. (It turned out that the doctor’s office had not checked to see if her prior TB test was positive. Because it was, her clear chest x-ray indicated she wasn’t infectious and there was no need to take the drug.)
Then she finally had a success: a year-long course of craniosacral therapy (CST) in 2002 left her migraines mostly in the past and gave her hope for healing her other ailments – and ultimately led her to become a certified CST practitioner in 2006. (CST loosens up the fascial layers that have become “glued” together, thus allowing the cerebral spinal fluid that feeds and cleanses the brain to flow). Flo reported:
“Cranial sacral therapy was the first real success that helped me think change for the better was possible….Craniosacral therapy threw me a life preserver!” Flo noted that Dr. Upledger found that “gentle pressure over time was more effective than stronger pressure because it doesn’t activate the nervous system’s tendency to resist…It simply feels safer on an unconscious level, so the body allows it.”
What an interesting idea given the hypersensitive nervous systems found in these diseases. Next came a successfully resolved but stressful bout with bladder cancer. Her experiences with Heart Centered Therapy (HCT) helped her calm her nervous system down and even produced a spiritual experience. Her stormy relationship with her long-dead sociopathic father changed when she considered the difficulties he’d experienced early in life had warped and traumatized him, and she experienced some compassion for him. Ultimately, she was able to uncover a sense of his deeply buried but “essential goodness”.
The heart-centered work led to multiple “Healing From the Core” courses. Despite all her emotional and spiritual efforts, and years of chiropractic/massage/physiotherapy work, her health continued to fail. Increasing back pain led her to give up her craniosacral therapy practice, her mobility plummeted, and her already poor sleep deteriorated.
A cortisone injection worked temporarily, but more importantly, led to a pain specialist (physiatrist) who used PRP (platelet-rich plasma therapy) which, while it did not remove her pain, helped significantly. Her continuing pain problems, though, led her to see 2 geneticists. She wrote:
“I had 12 homozygous “bad” alleles in the methylation cycle alone (which could account for the too low amounts of any of the “feel good” neurotransmitters), an MTHFR problem (so uber-sensitive to drugs, supplements, etc.), and the HLA gene that predisposes you to celiac disease”.
A long series of hydrogen peroxide treatments left Flo full of energy
The genetic results suggested she was light on “feel-good” neurotransmitters like dopamine and explained why she had such problems with detoxification. She cleaned up her diet (no wheat or gluten), ate organic food as much as possible, removed toxic elements from her house, etc.
Despite all her work and the many supplements she was taking, her progress remained slow, suggesting to her naturopath that an infection was involved, and which introduced a new therapy – hydrogen peroxide IVs. Twenty-four IV peroxide treatments over 4 months left her over the moon – her energy was back! She wrote:
“The difference in my level of pain and energy was nothing short of miraculous. I was overjoyed and excited about the future…and getting stronger and more fit as the weeks and months went by”.
She and her husband took a Pacific cruise from Vancouver to Sydney, Australia to celebrate. While dancing, she experienced a heavy pain in her chest. It mostly went away – but not completely – and she was advised to get a stress test and angiogram, both of which were negative. (She now wonders if the unusual exertion caused her chest muscles to push back causing pain – the cure was rest and a slower ramp-up of exertion.)
Upon returning home, though, she caught the flu, her pain and sleep worsened, and soon she was back to square one! Plus, with her veins shot – a long-term problem – she couldn’t get the H202 IVs anymore. A blood test diagnosed her with Chlamydiae pneumonia – an intracellular infection – which, her doctor explained to her, was “VERY difficult to eradicate”. More IV therapy was called for, but with her veins no longer useful, she made the difficult decision, after much thought, to go on multiple antibiotics and was on them for five months.
Her fears came true: slowly but surely, she deteriorated. A trip to Australia for her son’s wedding left her feverish and sick – and on another course of antibiotics. Coming home, the “pain, anxiety, and sleeplessness were brutal”. Now new neurological symptoms showed up. She had trouble tolerating lights, sounds, sometimes couldn’t handle watching the TV, had trouble reading and following conversations, and was regularly experiencing vertigo. She wrote it felt like she “had a lightning storm in my pressurized head”. Her world shrank: volunteering was out and her friends dropped away.
Flo’s new diagnosis rang true to her. She now believes her illness began after mold exposure in a former dwelling.
Her naturopath had a new diagnosis – one she felt in her bones was true – a mold illness that probably started decades earlier in the house where she first started getting ill.
With the diagnosis came years of treatment which would invariably go like this. Her ND/MD would prescribe treatments (Shoemaker protocol) which her brain/body “would respond to by going off the rails” and deteriorating until she “didn’t know her ass from her elbow”, at which point her husband would suggest that she cut back.
At one point, she was so cognitively impaired that her family wanted her to be tested for Alzheimer’s. Her practitioners never understood how sensitive her system was or the need to “start low and go slow”. Not surprisingly, over time she lost trust in them. It was the worst period of her life. She later wrote:
“I wasted years and lots of money being too loyal to therapists who were less than effective. I know now to ask more questions…and keep re-evaluating as I go. I thought it wasn’t ‘nice’ to question these experts”.
Still, a year later, she and her husband headed out to Japan for their son’s wedding! She survived a difficult trip, but coming home – she was done – with everything. She wasn’t going to commit suicide, but she was calm and ready to exit when the time came – and it looked like it was coming. She began taking care of her affairs and took a class on writing your autobiography so her kids would know more about her when she was gone.
Just as Flo hit bottom for what she thought was surely the last time, something almost remarkable yet simple and commonplace changed her life. She found a reason to go on.
Renewal
“I had already made my peace with God and family members, praying for death, when one son said they were expecting a baby (my first and only grandchild). The news gave me just enough of a jolt to ask God to help me, because I had no more ideas.”
Her daughter in law’s pregnancy proved to be a remarkable gift. The budding appearance of her first grandchild changed things and ultimately led to her recovery. Now she had something to look forward to. She remarked:
“Nothing in my life had changed one iota, except my attitude and belief that it was worth going on. And that would lead me to a series of steps and choices that not only helped me heal my brain but also a mountain of baggage and trauma that I’d carried all my life.”
Neuroplasticity
“A special Mindfulness and Meditation course just for people with chronic illness was advertised. I took it and realized that a few minutes of peace and calm WAS possible, as was neuroplasticity of the brain — even at my advanced age!”
Sick but reinvigorated by the idea of being with her first grandchild, Flo sought out new possibilities. She’d tried meditation twice before, and hated it both times, but when a course on mindfulness meditation and meditation based on John Kabat Zinn’s “Full Catastrophe Living” approach for the chronically ill opened up, she gave it a shot. A panic attack 30 minutes after the start of the class sent her out the door, but she came back. This time, the meditation – particularly the guided meditation – worked. Instead of feeling horrible, she felt peaceful and calm, plus the group sharing eased her sense of isolation.
Not that it was easy. The leader explained that our brains are addicted to worrying and fear but that by steady practice – she compared it to using a machete to hack a new path through the brush – she could start changing the neural pathways in the brain.
Flo wrote that, in retrospect, it was clear to her that her illnesses were “caused or exacerbated by the state of my nervous system”. The leader stated that, over time, the old well-worn, and oddly comfortable (because it’s so familiar) but unhealthy pathway starts to recede, and a new pathway becomes “the one of choice”.
Flo reported that she learned to pay attention to who she was being and what she was doing at any given moment, and focus on the present moment. She recognized that most of her attention “had been wrapped up in angst and bad feelings about the past or crippling worry about the future”. Instead of being focused on what had gone wrong, or what might go wrong, she worked on becoming more accepting of her current situation. She also recognized that the mold exposure “hijacked” her brain and robbed her of her ability to follow through on her intentions.
Not that she had achieved some Zen state – far from it! She had glimpses, though, of a calmer and more grounded person, which gave her hope, and that was all she needed: she’d demonstrated many times her ability to “go a long way on a little hope” 🙂
Tapping (Emotional Freedom Technique – EFT)
EFT involves tapping on Chinese meridian points
Then came the real turnaround. While attending a tapping/EFT Summit (the tappingsolution.com), she tapped on Chinese Meridian endpoints for 2 hours/day for 10 days – and felt calmer than after meditating. Her main goal was to reduce pain. By the 10th day, her pain had not changed a bit but she had! She felt peaceful despite the pain. Then the instructor asked the group to ask themselves these questions:
- “Is there any belief I have that is getting in the way of releasing some of this pain?”
- “Is that belief really true in THIS moment, or is it an old one that may have been true for me at one time?”
Up from her subconscious bubbled a belief she recognized as a core one. After her many years of illness, it made sense. It was:
- “There is not enough love in the world to heal everything that is wrong with me.”
After recognition came the questioning…
- “Was it really true? Today, in this moment – was it true?”
As she tapped, it became clear that it wasn’t true – that she actually experienced love all around her – she experienced “feelings of immense gratitude” and felt “a huge whoosh of energy” fill her body. With the heavy weight of the limiting belief gone, she felt exhilarated and happy – and went home and did a major house cleaning (!).
Not surprisingly, she took more extended classes. They weren’t easy and she experienced some major breakdowns, but she continued to notice positive changes. Her brain fog and vertigo were lifting bit by bit, her mobility was improving, her pain was finally starting to decrease and she dropped her cane and her anti-inflammatories.
Still, she had a long way to go. Next, she enrolled in a 10-month intensive course, the completion of which would certify her as a practitioner. Her book demonstrates what a comprehensive and complex course it was, but she succeeded. She writes:
“I slowly transformed my nervous system to spend more and more time in the ventral vagus parasympathetic state, and less and less in the high sympathetic or frozen dorsal states. As that is going on, the whole body can heal and work better because it is no longer in a chronic inflammatory state. Body, mind and spirit work together and influence each other. I uncovered limiting beliefs (instilled by attachment issues/old traumas) I never knew I had, and changed them to more empowering ones that reflected the real truth of who I was. I could think and behave differently and be open to new possibilities, because my history no longer decided my present or future, and because I was feeling better all the time.”
“Although I still have some back and joint issues, I am a happy woman with passion and purpose and SO grateful for the quality of life that has been good since 2019 — even through COVID. At nearly 70, I have taught workshops, coach 1 or 2 people at a time to help them reach their health goals, and am starting to work on my second book!”
It was a remarkable journey indeed. While Flo used a technique (Conscious EFT) that Dan Neuffer didn’t mention in our recent series of interviews, in some ways Flo’s turn to health was similar. Her ability to slowly turn down the stress response over time – allowing her rest and digest response to kick in – left her feeling energetic and healthy. Her temporary but clear success with the hydrogen peroxide treatments indicated that pathogens/toxins truly did play a major role in her illness. Rebalancing her stress response system – a major immune regulator – appears to have rebalanced her immune system, enabling it to take care of the pathogens that plagued her.
Flo’s Suggested Resources
- For inspiration and plenty of helpful info wrapped in storytelling, you can read my book “There’s A Leak In My Boat! The Challenges and Gifts Of My Journey Through Chronic Illness” ( https://www.flolevia.com/). There are a ton of Resources at the back.
- For the best EFT programs that literally transformed my life, go to neftti.com. There is a free 5 part series, as well as the courses themselves.
- thetappingsolution.com is a great resource if you can’t afford to take courses. I got their books (Nick and Jessica Ortner) at the library.
Other Books:
- To understand polyvagal theory — any book by Deb Dana. My favorite is “Anchored: How To Befriend Your Nervous System Using Polyvagal Theory” (Sounds like a hard read, but isn’t).
- “The Sovereign Health Solution: Heal the Psycho-Energetic Root Causes Of Chronic Illness” by Dr. Eva Detko.
- “Thriving Through Uncertainty” by Tama Kieves
Please Support Health Rising and Keep the Information Flowing
Amazing! But believable. You hear more and more about the importance of the vagus nerve. And the flight/fight and freeze modes and how to get out of them.
Yep, the common marker in pretty much all the recovery stories happening now, and there are thousands, is Nervous System Regulation, incorporating PolyVagal theory and getting out of Sympathetic Dominance or Dorsal shutdown and back into the healthy ventral Vagal state, AND trauma healing work, which is a big part of the dysregulation! Neuroplasticity is amazing!
Agree 1000%…seems to be the pathway out of chronic illness…
I wish you would focus on the proper science, instead of giving air time to people selling their story of recovery and a book!!
🙂 Well – we do focus on the science – and there is a lot of it – too much to cover adequately actually, but if all we did was focus on the science there would be no recovery stories!
Amen to that!
Love that you provide us with all the latest science, and a variety of recovery stories Cort.
Health Rising has helped me to heal and I honestly would still be so unwell if it wasn’t for you.
I have always gravitated towards stories of recovery as my optimistic nature tells me ‘if they can do it, then maybe I can too!” and that has driven me for over a decade now.
thank you for your testimony 🙂 What did you do to heal it? 🙏
Totally agree. it is thanks to this forum and Cort that I discovered LDN, and that my life has been remarkably stable for a year now! Thanks again !!
Fully agree. Instead of looking at scientific details, it are these succes stories that may give us the insight what is/are the underlying problems and how they can be solved. This says a scientist with over 30 years of experience.
Right!
For those who argue that something isn’t proven, or is “woo-woo”, or the person is just out to make a buck (amazing how often that comes up) doesn’t a scientific approach require taking in every bit of data possible?
Science is about trying to explain the reality. This story (and the others) is reality at the level one wants to see it: with the patient and, here, coming to a cure. Just as useful as endeavors that do not work out.
Well said!! The Recovery Stories NEED to be shared, to give people hope that it IS happening and that it IS possible!! The ME/CFS healing and recovery community is huge now and there are so many recovery stories it’s undeniable! It makes no sense to me that people within the CFS community are SO against the possibility of recovery outside of pharmaceutical drugs, if that’s where they think “recovery” will come, that they resort to personal abuse, defamation, gaslighting and trying to shut down the voices of all these people, who have all been so ill, and are now well and recovered and living wonderful full lives!! It should be shared, it should be part of the ME/CFS commentary, it should be part of ME/CFS Awareness Day/Month etc! The narrative needs to be changed, Recovery IS possible, that 5% statistic is absolute rubbish!
I’m so happy to read all these things you wrote 🙏 Where can I find other testimonies of remissions?
I agree that these stories give many of us hope and should be shared and even studied, and I hope the 5% stat is understated.
But I also want to point out that with an estimated 2+million of us in the US alone, 5% is 100,000 people. You could spend the rest of your life reading 100k recovery stories and you’d still only be at 5%. Sure I’ve seen a lot of stories but… it is entirely possible that stat is correct.
Now, I do not take that as doom and gloom, but accept it as the likely reality, while also doing everything I can manage to give myself the best possible chance to be one of those thousands. Part of that for me is keeping tuned in to recovery stories, so I can see what worked for them and if there’s anything I might try. ‘Acceptance with a fighting spirit’ as Bruce Campbell put it (I think it was him).
My best to all of you
“Acceptance with a fighting spirit” – nice!
I think it’s great — really important — to read recovery stories, to give us hope thay recovery is still possible, even after 20+ years of FM/CFS plus assorted other chronic health issues. And especially to learn what helped others (like craniosacral therapy, EFT, polyvagal theory) that might also help us. So thank you and please go on featuring them.
It’s such a shame that people like you are happy to ignore & abuse all the people who are recovering, & there are thousands, just because their recovery has not been brought on by pharmaceutical drugs and “proper science” !! Recovery is recovery, all these stories need to be shared to give people hope, it IS possible, it IS happening, even for people with severe me/CFS who have been ill for decades! The sharing of these stories should be encouraged, supported and considered by the wider ME/CFS community instead of belittling and abusing/gaslighting those who have recovered! If you want to wait around for “proper science” to find you a drug protocol of some sort for recovery, then you do that, great, good luck, but don’t take your frustrations out on those of us who choose healing & recovery instead and are part of the enormous positive hopeful healing & recovery focused ME/CFS community!
Who knew we just had to tap our wrists to free ourselves from having to tube-fed!
This site is becoming grifter-central, which is a shame. How does it work, cort — you give them a platform, flood the comments with fake testimonials and you receive some percentage of the sales?
I take it that this angry comment is because you just CAN”T believe that something like this can work for someone. I understand that – it seems really remarkable to me too. Given this utter disbelief your only recourse is to believe that anyone involved in it is a grifter.
The problem is Jonathan that these kinds of recovery stories can now be found on many websites and Facebook sites. They are showing up every week. I don’t imagine that they represent but a small fraction of ME/CFS/FM patients but at this point they probably outnumber other ME/CFS recovery stories by a factor of at least 10:1.
The argument that if something doesn’t work for someone who’s being tube fed forget it just doesn’t fly for me. For one, virtually nothing works well for people who are being tube fed and for two – what about the vast majority of patients who are not being tubefed? Because someone is improving who is better off should they be ignored?
And no – Health Rising makes no money off the sales of her book or any EFT programs. I imagine the sales the Flo derives from the book won’t come close to recompensing the time she put into writing it.
If you can muster the willingness to look at the book instead of tearing it apart apriori I think you’ll find its lovely and compassionate story that clearly took a lot of effort. Even if you don’t believe in it you can grant that she’s not some kind of grifter.
Health Rising is simply committed to bringing the full range of treatment possibilities to the ME/CFS/FM and long COVID communities. That’s why these stories pop up from time to time. In truth, the recovery stories on Health Rising are heavily oriented away from the mind/body sphere. Health Rising is probably the only place you can find other types of recovery stories now.
The science for ME forum sounds like it might deliver what you’re seeking to be honest.
As a CFS/ME veteran of close to four decades – once you notice (again and again) the mindset and sense of identity that keeps people entrenched …well.. you can’t unsee it. Peace.
There are actually many years of good research studies that support how EFT-tapping improves both emotional and physical health conditions.
Thank you Flo for telling your story! My story mirrors yours in many, many ways. Craniosacral, breathwork, therapy, focus on building my immune system through regular labwork and targeted supplementation, cognitive behavioral therapy, massage, chiropractory and acupuncture have all contributed to my healing story. I love how you tied it to the reason to live of a grandchild. What a wonderful inspiration. Thanks for your courage in writing the book and sharing your story. It helps me continue my long journey
I really envy people like you as I would love to have the energy to pursue half of those things. I barely have energy to read this blog. Glad that you’ve found some things that have helped you.
Best wishes Mary for your journey. I fervently wish that you may you find some successes and healing modalities that work for you. You are not alone.
Thank you kindly Jayne. I know there are many of us on this journey. Even though nothing I have tried over the years has worked for me – I still do have hope that we will discover something that helps. The likes of Cort Johnson are an absolute light in a dark tunnel for me. I hope he knows just how much his kindness and effort are greatly appreciated by many. x
Oh goodness yes, Cort is a light in a dark tunnel. The courage to read this newsletter was a real turning point for me. Thanks Cort for your dedication and inspiration!
EFT might be something to try Mary! You can do it at home, it requires very little energy – It sounds like its a nice thing to try particularly for those who are more impaired.
She recommends the Tapping Solution by Nick Ortner. I just got it on Kindle.
https://www.amazon.com/Tapping-Solution-Nick-Ortner-ebook/dp/B009L5BWG6/ref=sr_1_1?crid=3CIROPL0CVYHU&dib=eyJ2IjoiMSJ9.aHA6FJ5vR–fYS6UjmXIR_-JkjxJ-zagy4ToMpJOq_Pht-Os1_559olUMF9D87jTvBv9QXOxdeFaoZ7XTZcnAl2wpUhKIu3FF41OCCsFcU7E2s-7K6bDldXuLWXdH6vodMz69SGWgfbkOKmQyl2TaFArdZtqm7i-bl4wa39S5Jq8clQnGDKNawrm0rqyKIvN96j5QQcoVk0Yhnnz4GgGjFUNCIbWzXXRb3UhABmpuGU.amwGwTqg0etcmNVjLrRJCOieYcvo6mfy0tXPMnGLkNI&dib_tag=se&keywords=the+tapping+solution&qid=1715089976&sprefix=the+tapping+%2Caps%2C229&sr=8-1
Hi Cort,
I do hope you are doing as well as you can and many thanks for your response. I will definitely look into the EFT. Can’t hurt to do so. Just briefly – I have spent close to $10,000 on so called cures and therapies. i.e. 60 bucks a month for PROTANDIM for 6 months that did nothing – 60 bucks a month for ENERGY from Oriental Botanicals from Australia that did nothing.- Just to name 2 of the pills that seemed promising.
Along with accupressure/accupuncture/reiki/healing/every type of massage. All to no avail. I have just tried LOW DOSE NALTREXONE which helped with the pain of my fibro but rendered me so fatigued I will have to come off it.
Thanks, Cort, for your kindness and care to people who really do appreciate having your unwavering help and support. x
Quick suggestion for ldn: I had to reduce my dose to 0.3mg every three days before I could get rid of the brain fog (I’m a writer – brain fog kept me from writing). Look up dosing indications, and be aware some of us need a MUCH SMALLER quantity, and it still works for pain. The ‘recommended’ doses, even for common things, can be 150 times larger, and daily. Individuals vary (a lot).
Olá! Poderia me falar o nome do medicamento? Eu sinto a mesma coisa! Quero falar para o meu médico sobre…
Thanks for that info, Alica. That was most helpful.
There are usually copies on Better World Books for about 5 bucks, in fact it’s about that on their website today – a sale for Nick’s birthday.
I’ve followed the Ortners and they do have some amazing stories but my problem with it is what to say. They do have limited free sessions on various topics where they talk you through it or an app for about50 bucks a year….
My problem as well.
I’m a formerly hard-charging adventure writer who was laid out in bed for a year with Long Covid that perfectly mirrored ME/CFS. After trying everything, seeing every doctor, taking countless drugs, medications, vitamins, etc., I took Neuffer’s course, ANS Rewire. It helped and I started exploring the ideas behind it while continuing to research new modalities and mindsets, determined to make the best of whatever health was available to me. After ANS and starting daily breathwork practice to help re-regulate my autonomic function, my physical capabilities grew over the following six months but I still struggled with getting back to work on a long-overdue book project with a looming deadline. Trying to work brought on vicious headaches.
That’s when I re-discovered EFT (I’d tried it years ago and liked it but fell out of practice). I’ve now been doing it every day for 9 months and it would be the first thing I would recommend to anyone struggling with these types of illnesses. I’m now working hard on my book daily, cycling into the mountains, backcountry skiing, and generally feel great (with slight hiccups at times which I can now control with EFT and other techniques I’ve picked up).
I’ve found no better practice for calming my sympathetic nervous system and engaging the parasympathetic, which, for me, has been the key to healing.
I have to say, Aaron, that your comment kind of provides instant validation for EFT for me.
For those who don’t know, Aaron is an ADVENTURE – with a capital A – outdoor, travel writer and photographer. He’s pioneered first descents in the Andes, pedaled across the Serengeti, worked as a skiing carnivore tracker in Northern Montana, lived with his wife and two young boys in a remote homestead cabin, climbed 6000 meter peaks, one year he pulled the kids from school and decamped for a year to the wilder corners of Central America…
Aaron and the grizzly bear – https://petapixel.com/2023/07/26/photographer-shows-how-fast-grizzly-bears-attack-in-heart-stopping-video/
He got absolutely creamed by long COVID and now EFT is working. Enough said! 🙂
Enough said….? I guess you can retire now Cort having found the cure.
:). What I meant is that if it helps Aaron it’s worth a try! Not that its the cure!
Remember the beginning of the blog:
” From Efthymio’s artificial intelligence aided recovery story, to vaccine, drug (rapamycin), neuroplasticity + alternative health, cerebral spinal fluid patch, mast cell + recoveries – it goes on and on – the theme has been the many different ways people can recover from these illnesses.”
We have 70 recovery stories on Health Rising and the really amazing – and a bit daunting thing – is how many of them are different. Different strokes for different folks – so no, I don’t mean to imply at all that this is “the cure”.
In fact, we have a very different (non mind/body) recovery story coming up shortly.
Aaron could give us ideas about what you said along with the tapping? Would you say you’re healthy and hiking in the mountains and such? I just bought a “masterclass” on the Tapping Solution website and listened to all 4 units and found in not at all useful for me, but have enjoyed the clips on their website.
Heard Peter Attia say, when he was in therapy to get over his anger and being so hard on himself, that each time that happened he’d have to send an audio to his therapist saying what he would say to a friend who made the same mistake . He thought there is no way this is going to work, but after 9 months, and sending his reply as if talking to a friend 4 or 5 times a day, his anger/rage at himself is gone. He says what a great example of neuroplasticity which he was doubting.
Peter is so honest :). It was enlightening hearing how such a successful person could still be so, so, hard on himself.
He changed the conversation in his head. That’s really something 🙂
You’re so right Cort. Have you read the last chapter of his book? He lays it all out and is so vulnerable. What an amazing and brilliant man. Esther Perel was one of his therapists and she’s great too. He told her he didn’t think he’d ever forgive himself for not coming home after his wife saved their baby. She said that’s ok, it’ll keep you humble. He seemed very satisfied with that answer.
thank you for your testimony. I will be happy to ask you a lot of questions, can we talk?
I loved reading this story as it has many similarities to my own.
Jon Kabat-Zinn’s Full Catastrophe Living was one of the first books I read on holistic health and it allowed me to start considering the psychological and behavioural aspects of my fibromyalgia. I went on to partake in the MBSR (Mindfulness Based Stress Reduction) course he developed, and I trained to be a teacher. Many years of meditation practice and vipassana retreats helped me immensely, and although I don’t meditate these days, the benefits of mindfulness are embedded into my daily life. This process got me in touch with the felt senses within my body and I began to receive clear messages from it that guided my healing.
I also used crania sacral therapy for a couple of years, and rewired my nervous system out of ‘sympathetic dominance’, (as my doctor diagnosed it), into a parasympathetic dominance using Somatic Experiencing therapy. A much better way to live and an essential step in healing.
I did extensive therapy to deal with emotional trauma and find peace with the perceived injustices and neglect that I had experienced throughout life. Accepting that my parents did the best with what they knew, and that they carry their own traumas and issues was part of the process.
I’ve worked extensively with doctors and my naturopath to diagnose and treat underlying infections, food sensitivities and nutrient deficiencies. A round of antibiotics of Helicobactor Pylori was a massive game changer. I’ve removed as many toxins from my environment as reasonably possible and optimise my diet to be low inflammatory and high in nutrition.
Genetic testing highlighted nutrient deficiencies I am predisposed to (vitamin A, D, choline and CoQ10) as well as slow methylation of catecholamines and tryptamines – which makes so much sense given my lived experiences.
I also got to a point where I was ready, and hoping to die. I thought I had tried every available option and I was worse than ever. Life was too difficult with full blown fibro. But then my niece was born and I found a renewed sense of life. I committed to learning more, trying more and spending all the money I had available in order to get better.
Thankfully it worked and I’m now 80% better. Still have a bunch of symptoms that impact my life but I continue to work with my medical team to figure out and optimise those.
I’ve been meaning to get into EFT – I have The Tapping Solution sitting on my bedside table waiting to be read. This gives me more incentive to do that.
Thanks for shoring this story. Hope it inspires many.
Isn’t this in line with Dan Neuffer’s observation. If the fight-flight system normalizes and you start to feel calmer again, that can be the start of healing. What I find remarkable is that she was TB positive but received no treatment.
It is known that TB can also take hold in organs and the body. It’s not always pneumonia. I knew somebody who had the same problems like ME/CFS and it turned out to be TBC. It was treated and has completely healed.
It does fit in with Dan’s idea – and others actually. The fact that she had a positive TB test earlier and yet her lungs were clean meant that she was not infectious – but she did do the treatment – which walloped her – and sent her health into a tailspin – made her stop working, etc.
Hi Cort, many things do not excist in Belgium or i can not go because bedridden. And to read a book in english (of wich i would not undersand the most, even if i could read it), while it is so hard to read a little piece in english on a better moment. i do not know how… Also living alone for excample with mold), i can not move to a better house. bedridden is stuck… wich i could do things…
Hi Konjin!
Here’s a YouTube video of Ortner. Maybe give it a shot! (You never know….look at Flo – she was at her worst and then EFT happened. Even if it helped you just 10 or 20 percent – that would be a big step forward.
https://www.youtube.com/watch?v=TnbRcO43CD8
i shurely wil try Cort. thanks! i wonder what ETF is because i do not know it here where i live. has ETF a full name?
Konijn, it is Emotional Freedom Tapping. While it sounds so simple, tapping gently on alternating sides of the body seems to help open the mind to new thought patterns. The video will show how, there are various places on the body to do the tapping.
thanks Elizabeth! i watched yesterday wich was allredy hard. and the tapping is even harder with my muscles. luckilly it is short but even then…
i even watched it with my earplugs in to dampen the noise, was not tolerable otherwise
“I wasted years and lots of money being too loyal to therapists who were less than effective. I know now to ask more questions…and keep re-evaluating as I go. I thought it wasn’t ‘nice’ to question these experts”.
A lot of doctors don’t want to be questioned. I was recently fired by a naturopath I’d seen for 4 1/2 years for asking questions, doing my own research, and thinking for myself, all of which she interpreted as me being a “difficult” patient who acts “like you don’t believe me.”
She wasn’t very effective, but at least she was willing to prescribe anything I was interested in trying. Now I don’t have anyone.
All of this tracks with my experience. The breakthrough for me and my migraines and chronic pain was the Alexander Technique, which shares a lot in common with cranio-sacral therapy, except it is a bit broader and addresses other parts of the body and other fascia more. But still, the main focus is the Vagus nerve. That and an intense course of meditation were some of the things that have helped me the most. I also take medicines that improve my bloodflow, and supplements of both adaptogens and vitamins that I’m otherwise deficient in. And I avoid inflammatory foods with histamine or other irritants in them. My recovery has been extraordinary and I often think about how lucky I am to have discovered these principles before 40 years had passed.
The experience of living in a body that wasn’t seriously inflamed was a revelation, and each of these practices contributed to my learning it. If you never get out of pain, if your inflammation never goes down, it’s a vicious cycle and your body remains sensitized to every new stressor that it encounters. If you manage to break the cycle, though, by activating the parasympathetic nervous system and deactivating fight-or-flight, the body can build resilience. It’s truly life-changing. Congratulations Flo on your successful recovery! I’m in training to teach the Alexander Technique now too, hoping I can bring the same lightness and ease of being to other people with our same illnesses. Good on you for passing on your breakthroughs, too! It’s a noble goal.
Time for a cynical remark.
40 years sick MECFS, and EFT was the defining factor that cured Flo?
Maybe the factor was luck? (or pregnancy or a multitude of factors)
– as we really still don’t know the origins of MECFS
– ánd if all ME patients have equal conditions
Our human brains want to understand why things happen so we will ascribe events that happened before/during a major change in our lives to a certain factor.
I would call it Magical Thinking in case proper science and clinical assessment isn’t there to back up a certain claim.
This also how religion has surged (How do we understand unexplainable events our minds can not grasp)
Btw: I have tried EFT, and many other ANS and body-mind therapies
And Don’t be discouraged trying these therapies, it might work for you.
My Apologies, sometimes I cannot withhold my (non-humble) opinion. Hope I didn’t offend anyone on my assessment religion.
🙂
She was in late 60’s I believe – so pregnancy was out. EFT was a surprise to me but the fact that she had done so much after the hydrogen peroxide IV’s indicated that she did have serious infection problems – yet EFT worked. That’s really something!
And yes, the sheer variety of recovery stories shows how heterogeneous ME/CFS is.
Aha interesting.
For me, the remarkable part of the story is that a moderate MECFS-patient can recover after 40 years.
– so there are cases where it’s possible!
Personally I don’t believe her recovery can be appointed purely to EFT if she had classic ME – PEM inducing
(BTW this narrative also does not help ME-community as ‘the cure’ ETF is already there).
What seems more plausible IMHO is that a complex amount of factors created a ‘PEM-Immuno-Mitochondrial’-Homeostasis. EFT (or any other brain-body) can be a football become fruitful, feeding ground to help remission. Less stress and coping with your traumas helps in any recovery.
But I Think biopsycho Models only play a (stretched) maximum of 5-10% in ME CFS vs Biomedical
– similar to other, auto immune illnesses like MS, Diabetis, SLE, Sjogren, etc
And personally EFT actually gave me PEM (but at least I tried)
Negative correlation with my symptoms
Anyway my main message = Correlation is not causation
Cort…what is the reason that hydrogen peroxide would be injected? I would never have the courage for that treatment! (however I use it to rinse my mouth out!)
It’s used by some alternative health practitioners to clear out toxins and pathogens. After everything failed with one doctor he had me do it as a last ditch effort which he said usually succeeded – but alas, it failed.
It’s also used as nasal irrigation at times apparently quite successful. We have a blog on it
One thing I really noticed is that EFT was not all easy for Flo – in fact she had some negative reactions and even some breakdowns in the process. But must have felt deeply it was good for her, and so kept at it.
My impression as well – that persistence was key.
I never know what to make of these stories, or how to apply them.
For example when she had her breakthrough in realizing that “all the love in the world was not going to cure her”. Why would one think of love as a cure for anything?? That is such an odd thought to have…and how is that relevant to healing from an illness?
Most of these stories describe people who feel that they have some kind of deep, emotional “limiting belief”, or past trauma, and then work their way through it and heal.
What about those of us who haven’t had any trauma (not everyone has had a traumatic experience in life, prior to getting sick), or who have no particular limiting beliefs??
While heart-warming, I find these stories frustrating. I don’t know how to use or apply the knowledge. I’ve had no trauma, and I don’t really have limiting beliefs.
I had a good and happy life, until one day I suddenly got sick. I don’t ascribe my illness (or its perpetuation) to lack of love, or to any kind of emotional trauma.
A simpler form of EFT than what’s described in this blog has been in my toolbox for regulation of emotions since a couple of years. It works for downregulating the nervous system, as evidenced by hearty yawning.
I learned it from free online sources (a website i think, and short Youtube videos).
Comment neuroplasticiteit opent mogelijkheid tot herstel. Het zenuwstelsel in herstelstand brengen is de ingang voor herstel. Dat is ook mijn ervaring. Ik herken me in dit verhaal.
Geen quick fix, maar het is mogelijk.
Translation from Google “neuroplasticity opens up possibility of recovery. Putting the nervous system into recovery mode is the entry point for recovery. That is also my experience. I recognize myself in this story.
Not a quick fix, but it is possible”
“Goed om te horen Claudy – veel succes met je verbetering – en bedankt voor het delen!”
Good to hear Claudy – good luck with your improvement – and thanks for sharing!.
Comment neuroplasticiteit opent mogelijkheid tot herstel.
Google translation “Neuroplasticity opens up the possibility of recovery.”