My Recovery Journey

Let me begin by saying that the following is not an endorsement of any program or protocol, but is a summary of my illness and recovery journey. I can only speak of my own experiences and that is what I have attempted to do here in the hopes of helping someone else who might be suffering. I write about the books Discover Hope and CFS Unravelled written by Dan Neuffer because they were pivotal in my decision to try a recovery program. The information included here about the ANS Rewire program is strictly meant as part of a recap of my personal experience. I am not affiliated with the program in any way and receive no compensation for its mention here or anywhere else. In full disclosure I have also been a guest on the related podcast, "Wisdom From The Other Side Of Recovery from Fibromyalgia, ME, CFS, POTS & MCS" by Dan Neuffer and received no compensation for that either. The following is in no way intended as medical advice. It is simply my goal to share my recovery and my healing skills with as many people as possible. 

Where does a recovery story really begin? It seems like it should easily trace back to the first attempt at treatment or therapy for an illness, but when the cause is unknown this process is muddied and convoluted and takes the form of hit and miss.

 

I was unwell for two decades before I was even diagnosed with CFS and Fibromyalgia. Some other diagnoses came before then too, which led to treatments, procedures and surgeries. Over the many decades that I was sick I saw so many doctors. At one point I had counted 22 specialists. Each new provider wanted to start at the beginning or near there, and followed their own thread mostly unaware of the entire quilt of my illness. There were so many labs, images, etc. and I took my share of pills, fluids, and injections. Some abnormalities lent themselves to focused treatments, and then there were the many "alternative" or complimentary therapies, herbs, diet modifications, supplements, hormones, and more. A few of these things helped sometimes, and then would stop helping, and may have even started helping on a second try some time later. Some made me much worse.

 

It wasn't until I was finally diagnosed with Lyme disease some 20 years after a tick bite that a treatment protocol actually made a significant impact on my health. The tick bite was several years after I was already very sick, so it added another square to my already colorful quilt. A neurosurgeon finally clinically diagnosed me. Since the original standard lab test for Lyme was negative, and Lyme had been ruled out as part of the diagnostic criteria for CFS years before, no one even considered it again until she listened. I was prescribed a specific collection of herbs from the Byron White protocol for heavy metal detox followed by certain ones for Lyme. It was a very slow process with extremely low doses that required close scrutiny and dose management based on symptoms.

 

Simultaneously I was leaning on weekly myofascial massage, acupuncture, chiropractic care, physical therapy, yoga, Tai chi, and Reiki. I had been gluten, dairy and mostly sugar and alcohol free. Then my husband and I began a whole food plant-based diet. I did guided meditation several times a week and listened to many different spiritual leaders. Modifications to sleep hygiene were not really helpful in restoring the deep sleep I needed, and I still had many digestive issues, migraines, chronic pain, blackouts, loss of language, disorientation, ​weakness, photosensitivity, post exertional malaise (PEM), brain fog, memory and cognition issues, fatigue, symptoms of orthostatic intolerance, and more.    

 

The herbal protocol took three years, but I went from a functional level of 40% to 60%. That might seem pitifful to some, but at that level of functionality a 20% increase is significant. The timing was such that I spent the next three years caring for my aging parents, supporting my mom through treatments for stage IV ovarian cancer, and my dad through recovery following a stroke, and eventually supporting them each through their ends of life. This would have been impossible for me without the gains from that treatment protocol.

 

The week my mother died my husband's work forced him to move from New Mexico to Arizona. We bought a house in Phoenix but didn't tell my Dad, who I was still caring for while he lived in his house. My husband moved without me, but it didn't take long to realize that I was too ill to maintain our house and my dad's while still caring for him. We sold our NM house and moved my dad in with us in Arizona in the Spring of 2017, two years after I had completed the herbal Lyme protocol. 

It was several months later that I received a request on my Facebook advocacy group page from a former patient who wanted me to share a link to the paperback version of his book, CFS Unravelled. Since my Facebook page had a focus on evidence based-information, I told him I'd have to read the book and make a decision. I went to the corresponding website and read the free downloadable book “Discover Hope” and was very intrigued. It was sensible, well written and filled with hope. I watched a few recovery videos. Before this  I had knowledge of only a couple of high profile patients who had recovered from ME/CFS/FM, and in fact I staunchly supported the belief that this only occurred in a very small number of patients. Now this belief was shattering before my eyes because there were hundreds of people online who had done just that, and I suspect many, many more who also recovered but were unwilling or disinterested in reentering the world of the chronically ill to make the announcement only to be doubted, harassed, ridiculed, and ignored.

 

I read the CFS Unravelled book, which went into depth describing how the autonomic nervous system works, how it affects the various systems of the body, and I saw clearly that all of my symptoms could be explained by a dysfunction in this part of the nervous system. For the first time something explained my illness experience, and remember, I was an advocate. I was up to date on all the latest research, I attended government meetings about the illness, made testimonial videos to the committee to the CDC, and participated in working groups who wrote papers on this illness. The idea of recovery was foreign to me, but reading the theory that correcting autonomic nervous system dysfunction would lead to recovery changed my mind. I had studied the nervous system while getting my degree in psychology, had many professors who taught neuroscience and I understood neuroplasticity of the brain. CFS Unravelled bridged my knowledge to the potential for recovery of the illness from which I had suffered and suddenly everything made sense. I enrolled in ANS Rewire in early 2018, which cost no more than I had spent on supplements in any given year over the course of my illness. I entered into this process believing that I was somehow unique compared to other patients, that my illness presented differently. I felt extremely skeptical, and hoped that perhaps I might see some improvement. 

Call it coincidence or kismet, but I had an appointment with my neurologist the same week that I highlighted a sentence in the book where it is recommended to find a naturopath to guide the recovery process. My neurologist mentioned in passing that they had a doctor of naturopathic medicine on staff! I told him my history, outlined my plan and gave him the name of the book and recovery program. He not only read CFS Unravelled, but he also contacted Dan Neuffer, the developer of the program and author of the book, and had a conversation with him about me and my case. He was super supportive, and in fact he is the most compassionate holistic provider I've ever had on my team. It really felt like the universe was rolling out the red carpet for me! 

I had some concern about whether I had the energy to even do such a program. How could I possibly add anything "extra" to my already exhausting day? As I was soon to learn, this program is multifaceted and comprehensive, and I was determined to get as much out of it as I could, so knowing that it is self-paced was helpful.  With my limited abilities I knew that I also had the option to watch in smaller sessions if necessary, and go back and review anything if needed. 

 

I made the decision to watch a recovery video each day and to behave as though I was at a recovery facility. This meant that rather than giving up the idea of doing a recovery program because I may have limited energy, it was smarter to temporarily delegate other responsibilities while I focused on regaining my full health. Afterall, I had just cared for my mother while she was sick with cancer, and no one expected her to cook, clean or do housework throughout her chemo, so why should I expect that of myself when I was actually more limited than she was even on her worse days?

 

For the duration of the program everything I said, did and ate had a focus on recovery, but as the program and meditation taught me, I did this with self-compassion. I ramped up meditation to 45 minutes of mindfulness and loving kindness meditation. I shifted my online time to focus on content that supported my recovery. I learned other ways to meditate through the use of visualizations, mantras, focus, etc. I continued with movement meditation, gentle yoga or tai chi or short walks. It's important to note that I was not militant, but rather I adopted a focused intent to do the best I could and make the best decisions for my recovery. Of course, this didn't always happen, and there was a learning curve. The sleep module was helpful for me as was the pain management tool. I modified how I practiced some of the tools that were included in the program to personalize them, but maintained the original framework.

 

Having a guided video session each day gave me confidence and hope. I felt like I was proactively involved in improving my health, while before I was focusing my energies on things that now seemed to keep me mired in illness. Reading comments on the ANS Rewire program interface from other patients who were either recovered or were in the program helped me to better understand my own process, and made me feel less alone. Each session had a summary, so I would review those to make sure I understood and retained the material before moving on. I took a few notes and made some audio recordings and short videos throughout the process.

 It wasn't until after my recovery that I learned that others have tried different recovery programs and although I never tried any of those others, I now have a clearer understanding of how they work. The ANS Rewire program is not simply a brain retraining program. It is much more than that.  It is built on the premise that this is a physiological illness, not of psychological origin, and it offers several modules that address various practical ways to rewire the ANS in order to find homeostasis. It takes you step by step in a methodical fashion through the modules, with suggestions for practical applications between sessions. The program includes a tool for measuring progress, and you can return to any module at any time, and take the time you need to complete the program. 

My naturopath made some changes to my hormones (thyroid, estrogen and progesterone) and as I progressed through the ANS Rewire program and practiced everything each day, I began to feel improvement. At first, I noticed my sleep felt more rejuvenating. I woke up feeling refreshed several days in a row. That was new! Then I began to notice that I had more clarity, and didn't really feel like I needed to nap or lie on the couch as much during the day. My gut was healing, and my energy was increasing. I pushed myself a bit more than I should have at times, but I began to notice that the consquences were reduced in intensity and duration - a sign of recovery for me. I began to shift my thoughts. I realized how many coping mechanisms I had put in place to protect myself that were actually perpetuating the illness at the brain level. This is where the rewiring was imperative, and learning to do this properly was important. I added some animal protein back into my diet, and gradually reintroduced gluten and dairy and tolerated both just fine. The recovery process caused me to really examine how I was using my energy, what triggers me, what I was thinking, eating, doing, how I was standing, sitting, speaking, relating to others and to myself. I had no idea who I would be after recovery, but I was no longer afraid of who I would be without illness, I reviewed my patterns and beliefs and made many changes in how I approach life and others in general.

 

Post-recovery I am not the person I was before I became sick. I'm certainly not the person I was while I was sick, but I have emerged into someone who grew from the seed of who I was at the core, to a refined new self. Committing to this program and to recovery is probably one of the most challenging things I’ve done, and one I’m proud of having done. I could easily have dismissed it with excuses for why it couldn’t work for me, but it was the right time for me and so I latched on with trust and it paid off in spades.  I am so grateful that I read that book and did that recovery program five years ago.  I’m forever grateful to the universe for revealing this recovery journey, grateful that I made the decision to read the books, watch the recovery videos here, and do the ANS Rewire program, and to Dan for stepping in my path.