A Story With Hope
“Just over a year ago, I could not leave my house without a wheelchair. I spent most of my day on a couch or a bed, lying or sitting down. I avoided light, sounds, gatherings.” Christine
I attended the Accelerating Research on ME/CFS Conference at the National Institute of Health (NIH) in April 2019. I am a Nurse Practitioner (NP) who worked for many years in a setting where I often sent my patients to the NIH to participate in particular studies. I was not at the Accelerating Research on ME/CFS conference in my capacity as an NP, but rather as someone who has lived with ME/CFS since 2004.
I have my own story of hope, and I decided to share it here because I met so many people at the conference who, upon hearing a bit of my story, pulled out a paper to jot down the name of the method which I credit with my recovery. If this account can be helpful to even a subset of people who live with ME/CFS, then it will be worthwhile.
Just over a year ago, I could not leave my house without a wheelchair. I spent most of my day on a couch or a bed, lying or sitting down. I avoided light, sounds, gatherings.
My journey to that point is a complicated story. The change in my health status started in 2004, when I was hospitalized on a neurology unit with difficulty walking, extreme fatigue, strange sensations in parts of the right side of my body, and vertigo. I was discharged after a few days of studies, with the evaluation to continue as an outpatient.
The work-up continued for weeks, including further MRIs, an electroencephalogram, a sleep-deprived electroencephalogram, an electronystagmography (ENG), and lab tests ordered by specialists in Infectious Disease, Rheumatology, and ENT. The only abnormal result was the ENG, which pointed to central nervous system pathology, though all MRIs of the brain and spine were normal. I spent 8 weeks on sick leave, puzzled, extremely concerned, and frustrated that I could not regain my energy.
Finally, I was given a diagnosis of vestibular neuronitis of viral origin, though the virus was not identified. I was suspicious that it might have been West Nile Virus, which was endemic in my neighborhood. The diagnosis felt pretty nebulous and not completely satisfying. A colleague at the clinic where I worked later told me that she had suspected I had a brain tumor when she heard about my symptoms. My neurologist was contemplating a diagnosis of multiple sclerosis.
Fortunately, after my 8 week leave, I recovered sufficiently to gradually return to work part-time – though I always said I was never the same after that. I needed more sleep and water, a schedule with a mid-week break, and to avoid heat, standing, and excessive exertion.
I had been a generally healthy 43-year-old when my symptoms began, though I had taken many rounds of antibiotics and anti-parasitic medicines during the 9 years I lived and worked in Central America from 1985-94. In 1992 I also was diagnosed with Erythema nodosum, a skin condition where red painful lumps would periodically appear on my shins. This condition is sometimes an indication of underlying infection, though, as in my case, the cause is often not identified.
After 2004, I would relapse in 2005, 2007, 2011, 2013, and 2014, spending weeks off work. The trigger for the relapse was usually some form of physical exertion. I had always enjoyed running and still kept this up with less frequent, shorter runs, except during relapses, and never in the four hottest months of the year where I live.
My doctor, my family and my community would all wonder about the “mysterious illness” that would periodically resurface and take me down. I returned to my neurologist for further testing, and revisited rheumatology and cardiology, ENT and Infectious Disease for multiple work ups over the years.
Then in 2011, I started to have significant gastroenterology issues (diverticulitis, Irritable Bowel Syndrome) and ended up with major complications, leading to heavy antibiotic use, and repeated Clostridium difficile (C. difficile) infections that would not respond to high-powered antibiotics.
In April 2014, I hit my head in my kitchen and was diagnosed with a concussion. All of the symptoms that had started in 2004 immediately returned: the unusual gait in my right lower leg that was always present with an episode, the changed sensation in my right lower leg and the right side of my face, profound fatigue and the need to avoid exertion. After weeks of rest, my symptoms gradually resolved and I cautiously and very gradually re-entered my workplace.
In the summer of 2014, I had a repeat episode of diverticulitis and C. difficile infection. Concerned about needing to repeat rounds of high-powered antibiotics without complete resolutions of the symptoms, I researched fecal microbiota transplants (FMT).
After finding a gastroenterologist who would perform the procedure, I had an FMT in September 2014, which cured my C. difficile infection. Interestingly, however, my level of energy also dramatically improved, and I felt energetic again. My family commented on how I seemed to be coming back to my pre-2004 self.
A Major Decline Begins
In late August, 2015, though, while running on a relatively cool day, I suddenly had to stop, and then could hardly walk. I stumbled home feeling nauseous and disoriented. Another work-up began: cardiology, neurology, emergency room visits, a lumbar puncture, and repeat MRIs of the brain and spine. Since nothing significant had appeared in the past (beyond low white blood cells, no fever with infections, overly brisk deep tendon reflexes, and the abnormal ENG test), I figured it would just result in another 6-8 weeks off work.
This time, however, my health and level of functioning continued to decline, in spite of normal labs and imaging results. When I felt like I was improving, I would take a walk around the block and then try to extend the walk the next day.
On one of these occasions, I suddenly felt like I could no longer move my legs, and electric sensations started climbing up my legs to my lower spine, then to my waist. I somehow managed to get home, and then I trembled in bed, on a hot day, incoherent and barely able to move. Apparently I was experiencing post-exertional malaise, though all of us who have lived through it know it merits a different term.
This last episode convinced me I was facing something more serious. I resigned from my job in December 2015 so I could focus on recovery. I was given the diagnosis of ME/CFS in March 2016, when both my primary care physician (PCP) and I recognized that I met the criteria. I had this diagnosis confirmed in October 2017 by an esteemed ME/CFS specialist who was a panelist at the April 2019 NIH conference.
By then I was in a wheelchair, which I finally requested in early 2017, so I could attend my father’s funeral. I could hardly leave the house. My world had become very small and unpredictable, as I found I needed to shield myself from stimuli and exertion.
I would say to my spouse that I felt “activated,” and he could often recognize the process in me. Even my PCP would say, “It’s happening again, isn’t it?” The onset of my symptoms felt like a switch had been turned on in me that I could not control.
What To Do?
Along the way, I tried many methods and many medicines for recovery. My PCP, whom I greatly respected, told me in March 2016 to find a specialist, since the condition was outside her realm of expertise. She also made the comment that she did not think that we would find a treatment for this in my lifetime. My thinking: I only have this lifetime, and I have 2 daughters. So I set out on my own quest, when energy permitted.
In the first episode in 2004 when I was diagnosed with vestibular neuronitis of viral origin, the neurologist prescribed low-dose Clonazepam. He knew I was an NP, and that while that class of medicine is typically prescribed for anxiety, he was prescribing it instead “to cool down your whole nervous system.”
It seemed to be helpful. I would use the medication in very low dose twice a day for the periods of my “relapse” and then wean off it again. In late 2015, my PCP suggested staying on it, which I did for three years. In 2004, I also decided to visit an acupuncturist, since Western medicine was not offering me any other suggestions for recovery. I found it helpful, so would make an appointment periodically.
After my second round of diverticulitis in 2012, given all my gut symptoms, I started reading about different diet approaches and was particularly struck by the book Breaking the Vicious Cycle, by Elaine Gottschall, who recommended the Specific Carbohydrate Diet. I followed the diet for almost a year and then was able to expand my food choices. The diet pretty much eliminated my abdominal pain, which was helpful in avoiding the stress of wondering if I was headed toward another episode of diverticulitis. However, I had trouble sustaining my normal weight, and so added in other foods.
- Christine, a registered nurse, first became ill in 2004 as the result, doctors thought, of a mysterious virus.
- Over the next 15 years, she relapsed and recovered five times but did not recover from the last relapse which came out of the blue in 2014.
- Besides the possible viral infection she also experienced a C .difficile infection and concussion, and was diagnosed with HHV-6 reactivation and irritable bowel syndrome.
- She was diagnosed with ME/CFS by her primary physician in 2016 and by an ME/CFS expert in 2017.
- Before she began the DNRS program she’d become wheelchair bound and was hypersensitive to light and noises.
I went gluten- and dairy-free, which I pretty much maintain to this day. I tried a more extreme elimination diet, which was not particularly helpful. I take a probiotic and saccharomyces boulardii, a yeast recommended by my gastroenterologist given my C. Difficile history.
I also read the book The Wahls Protocol, by Terry Wahls, in pursuit of other potential remedies, since multiple sclerosis was in my differential. Her focus on feeding our bodies with quality foods high in nutrients and good fats, and avoiding toxins, processed foods, sugar was something I chose to adapt.
As it happened, after my own fecal microbiota transplant, I became very interested in the microbiome and attended a conference on the topic in Barcelona in early 2015. The link between the brain and the gut felt so pertinent to me. When my gut was in distress, it impacted my cognitive and emotional state of being and my level of energy significantly. Unfortunately, I was too weak to attend the follow-up conference in Miami in 2016.
I visited an osteopath and received craniosacral therapy, which I found helpful, if not curative, though it was expensive and far from my home. Looking back, the osteopath’s advice to increase the time spent in the rest and recover mode of the parasympathetic nervous system makes even more sense.
She recommended oil of oregano for management of candida in my gastrointestinal tract, visible on my tongue. This slower method of killing it off was easier for my body to tolerate than Fluconazole. My acupuncturist is also a Qi Gong master and showed me a few helpful moves to incorporate into my day. I also started listening to a short Yoga Nidra tape, a form of guided meditation, on most days after lunch. I meditated for 30 minutes a day on most days.
When I saw the ME/CFS specialist in Oct 2017, I tested positive for Human Herpes Virus 6, and was initially prescribed the antiviral Valgancyclovir (Valcyte). However, after an unexpected trip to the ER for chest pain, my white blood cell was again low and declining. I was not a candidate for Valcyte. I opted to take Acyclovir for 5 months from January until July 2018.
I also started low-dose Naltrexone (LDN) in December 2017, which I continued to take through December 2018, and soon added methylfolate and glutathione nasal spray for a few months in 2018. An earlier SSRI (anti-depressant) trial over 8 weeks was not helpful, as it disrupted my sleep no matter what time of day I took it. I tried many other supplements as well as tapping, body brushing. I experienced small gains with many of these remedies, but it did not feel like I was restoring my health as I wanted.
In 2016, while visiting the Health Rising website, I read about the upcoming Cortene trials that treated ME/CFS as a limbic system disorder. I had not thought a lot about this approach to the illness, but found it intriguing. However, I knew it was unlikely that I would be accepted into the trial, and I also felt extremely cautious about the idea of taking a new medicine, leery of the possible side effects.
Then, having heard some of my story, a colleague of my husband’s suggested I read Wired for Healing, by Annie Hopper. I had read so many books that I did not immediately request it.
A little later, however, I heard a video series on brain injuries where Annie Hopper was interviewed, and once again her approach caught my attention. Her name then came up in a third setting with a friend who had used the method to overcome extreme sound sensitivity, so I decided to learn more about the method.
I visited Annie Hopper’s website to order her book, and also decided to order the DVD series where she teaches her method, the Dynamic Neural Retraining System (DNRS).
Rewiring My Brain
Here my story begins to change. Within a week of beginning the DNRS method in March 2018, I felt a significant shift in my body — not huge, but enough to tell me that I was on to something, and that I would stay the course.
The DNRS regards ME/CFS as a brain injury, specifically to the limbic system, and uses a method of neurorehabilitation as treatment. Foundational to this method is the science of neuroplasticity – the findings that our brains have the innate ability to change and are vulnerable to being altered by the environment, in good or bad ways.
Now, I pause.
I know that because the treatment involves neurorehabilitation, some will say that “it is all in your head.” I have come to agree that the condition begins in my head, where my brain resides, just as a stroke is in your head, or a brain tumor is in your head, and no one denies the severity of that or the fact that it is a physical finding.
I believe that in ME/CFS, the injury is real and physical, even if science has not yet found the tools to identify it. In the movie Unrest, I so appreciated the story of how multiple sclerosis was for many years known as “hysterical paralysis” before imaging could identify the damage to the myelin sheaths. The same will eventually happen with ME/CFS, which is why studies and research are so crucial. But since we only have one lifetime, those of us alive and suffering need more immediate solutions or methods that can improve quality of life, and even provide recovery.
In 2015 when a new setback with concerning symptoms sent me back to the ER, I was told to see a neurologist. Since my original specialist was not available, I obtained an appointment with a neurologist newer to the institution whose specialty was multiple sclerosis. By that time, I had also spoken to a family friend who is a neurologist and who insisted that I needed a lumbar puncture.
I saw the new neurologist on a day when I was able to leave the house and tried to convey the urgency and severity of my symptoms. She reluctantly performed the lumbar puncture. Later, my PCP allowed me to read the note she received from the neurologist, which essentially suggested that the problem was psychogenic – essentially “all in my head.” I felt like I had been punched in the stomach when I read this: it sucked the air out of me. “Do not go back to that neurologist,” said my PCP. So, I mean “in my head” in a very different way.
I recall the NIH ME/CFS conference where I heard specialists speaking of ME/CFS as “brain-centered,” “autonomic dysfunction,” and “immune-mediated brain dysfunction.” The DNRS method treats the illness as a dysfunction in the limbic system, a very primitive part of the brain. The dysfunction leaves that part of the brain susceptible to an involuntary trauma pattern in the neurocircuitry, particularly an overactivated fight-or-flight response of the sympathetic nervous system, which overreacts to stimuli and exertion (Hopper, 2014).
(From Dr. Jay Goldstein MD, to Andrew Miller PHD, to Lucinda Bateman MD, and Mary Ackerley MD, and most recently, Angus MacKay, many researchers and doctors have proposed that the limbic system – which links together the endocrine and autonomic nervous systems – plays a significant role in ME /CFS. Cort)
In ME/CFS, case reports suggest that the insults that can cause the injury are varied: a virus, a bacteria, mold or a chemical toxin, or physical or psychological trauma. In my case, the insults were multiple and cumulative over time: they include a virus, a concussion, and gut microflora disruption.
The fight-or-flight response is a reaction that our bodies use for life’s emergencies, and produces a particular set of neurotransmitters. However, if the switch is overactivated and a person becomes “stuck” in this state, the neurotransmitters like cortisol and adrenaline are overproduced and contribute to exhaustion, inflammation and damage to different body systems.
By learning how to block this inappropriate pathway to the fight-or-flight response and rewire the brain away from this injury, my body was able to gradually return to a state of equilibrium. The DNRS method was powerful in teaching me how to reinterpret what was going on in my brain, and then to block negative pathways and rewire my brain, so that I learned to change my body’s response to triggers and gradually restore my wellbeing.
- Craniosacral therapy, Clonazepam (initially), and, in particular, a fecal transplant, helped.
- Annie Hopper’s Dynamic Neural Retraining System was the key, though, to her success.
- Her program was slow but steady. A year after starting the program, Christine was able to successfully run again. Eighteen months later she reported that she travelling freely, taking hour-long walks without incident and rarely needs to use the program anymore.
- She stated: “I credit the Dynamic Neural Retraining System with the huge shift in my body that allowed me to reclaim my life. In my autonomic dysfunction, it directed my responses away from the overactive sympathetic nervous system ( fight-or-flight) that had created a state of chronic inflammation, and it boosted the parasympathetic nervous system. (rest and digest) allowing for rest and restoration. A wonderful part of the method was that I was in control, so it felt very empowering.”
- She recommended the Wired for Healing, book by Annie Hopper, and the Dynamic Neural Retraining System. Check out doctors who recommend the DNRS here.
- Her advice – “Surround yourself with people who believe in you. Keep hope alive.”
I implemented the program in my home in late March 2018. It requires dedicated attention, and at the beginning, I did the training lying down.
My recovery has been gradual. Within a week of starting the training, I left home without the wheelchair for some brief outings. I gradually was able to tolerate noise in restaurants that in the past felt unbearable. I was soon able to walk outside again, and to go up and down the stairs in my house.
A year later, in March 2019, I took a run. Symptoms fell away as I rewired my brain to respond differently to stimuli and exertion. I found myself celebrating triumphs: “I walked around the block!”; “I drove to my daughter’s track meet, watched it and drove home!”; “I went to a loud restaurant and enjoyed a meal!” All of this had been unthinkable in the previous year.
In consultation with my doctors, over the year of implementing the training, I gradually stopped the 5 prescription medications I had been taking — Acyclovir after 5 months, Clonazepam weaned over 6 months after 3 years, low-dose naltrexone weaned after almost a year taking it, glutathione and methylfolate, after taken for a few months.
I no longer take any prescription medication, though I continue to take magnesium glycinate, vitamin D, metamucil, probiotics, and senna as needed. I understand that it is possible that all the medications I took along the way altered my physical chemistry to allow my body to then respond differently to exertion. But I am also convinced that without the DNRS method, my brain would still be stuck in a pattern of overreaction.
I have been so incredibly fortunate to have the unwavering support of my spouse and two daughters, and a wonderful community of friends and family around me. They all celebrate my return to fully participating in life, after years of needing to shield myself from most stimuli and exertion. For this, I am so thankful, and I tell my story to offer hope to others.
(Christine’s Jan 2020 Update: I don’t feel like I have unusual limitations any more. I travel as I want to, including a 10-day trip with a 2-day workshop for health care providers in November. At the end of the trip, I took the metro home from the airport and walked the mile to my home with my luggage on my back. Then I just kept going. I think recovery now feels like the right word. Amazing!!! I am still so grateful.)
(Cort’s DNRS update – I started the DNRS approximately 4 months ago. The program was going pretty well – I was feeling some moderate increases in energy and wellbeing – until I let travel and family activities, and most recently the donation drive, get in the way and didn’t keep up with it. (Dr. Ackerley said the main problem her patients have with the program is keeping up with it. I can attest to that.) I will re-begin the program again shortly.)
- Have a recovery / recovering story? Don’t hide your light under a bushel! Please use the contact form to share your story (using your real name or a pseudonym) and spread the news. Recovery stories provide hope and new options….
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