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Geoff’s Narrations

The Blog

The GIST

 

FloLevia

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 patchmast 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 patchmast 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.

Leak in my Boat

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”. 

Hydrogen peroxide IV's

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.)

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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.

Mold

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)

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

Other Books:

 

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