Basic Stuff

• Name: Leslie Fellows
• Country: United States
• State: California
• City: Santa Cruz
• Gender: Female
• Age: 62
• Education: Four Year Degree
• Primary Illness: ME/CFS
• Diagnosis:
  • Chronic Fatigue Syndrome (ME/CFS)
  • Fibromyalgia (FM)
  • Postural Orthostatic Tachcycardia Syndrome (POTS)
  • Irritable bowel syndrome
  • Small intestinal bowel overgrowth
  • Hashimotos, IS, PFD, dysautonomia, peripheral neuropathy, Ankylosing Spondylitis, stenosis
• Year Illness Began: 2014

Functioning Interrupted

Most Impactful Loss

For me, the most impactful loss is thinking of all the potential things that may never be. Career, friends, family, relationships, travel, adventure... what might have been had I not gotten sick.

My Story

I started getting sick 10 years ago. Before that I was an active and energetic person attending an Ivy League all-women’s college and pursuing a career in the arts. I have always been driven and career focused. From 2000-2010, I was a UC art gallery manager/installer, a very physical job. During that time, I was taking wine classes and after 3 years, I tested and was certified as a Wine Specialist. In 2011, I felt I’d won the lottery when my uncle developed a winery in Uruguay and brought me on board. I traveled all over working hard to sell our wine in the US and beyond. It was a joy and honor introducing people to Uruguayan wines. A dream-come-true job and so exciting.

In 2013-14, I began feeling tired and sick all the time. It started with what appeared to be dozens of UTIs/kidney infections for which I was given at least a dozen rounds and shots of antibiotics. Eventually, I was diagnosed with interstitial cystitis followed in short order by visceral hypersensitivity, gut permeability, gastric motility disorder, SIBO, IBS, PFD, neuropathy, myopathy, fibromyalgia. I kept pushing through it, which I only later found out was the wrong thing to do. I saw many doctors and was prescribed numerous medications. Unfortunately, I just got sicker and sicker and become almost totally housebound, unable to travel for work or do my job.

In 2015, I was referred to a neurologist at Stanford. He found dysregulation of my autonomic nervous system and referred me to the Stanford Chronic Fatigue Clinic. In 2016, I was diagnosed with ME/CFS. I cried with joy that day as many of us do when we finally receive an answer. My treatment plan letter stated: “The patient will limit activities including walking, lifting, bending and similar physical exertion and follow our anti-viral and anti-inflammatory protocol. We anticipate a minimum of 12 months of treatment before she is stable.”

My medical bills that year totaled over $100K. In 2017, my insurance would no longer cover out of network ME treatment at Stanford, so I switched to Kaiser hoping they would extend it. I opted for an infectious disease PCP who I thought would have some ME/CFS knowledge and allow me to continue my Stanford treatment. Instead, she referred me to a psychologist for CBT (Cognitive Behavior Therapy) and recommended GET (Graded Exercise Therapy).

Kaiser subsequently denied my appeal to continue my Stanford ME treatment. I fought all the way up the chain to the state Department of Managed Health Care, an exhausting process. The denial letter stated “Kaiser has qualified Specialists to provide care in Plan.” At that time, there were no ME/CFS specialists at Kaiser. Currently, I believe they have 2 physical therapists but no other specialists that I know of. I do have good care at Kaiser for all my various co-morbid conditions including fibromyalgia, ankylosing spondylitis, cervical stenosis, gastritis, chronic SIBO/IBS, autonomic neuropathy/dysautonomia/POTS, chronic pain, MGD/dry eye syndrome, Hashimotos, etc.

Alongside western medicine, I have done numerous alternative modalities, including naturopathic treatments (Genova testing, cleanses, supplements), sleep hygiene, colonics, visceral mobilization, craniosacral therapy, electromagnetic therapy, energy work, chronic pain classes, EMF remediation, Dynamic Neural Retraining System (DNRS), Rolfing, NAET, acupuncture, chiropractics, myofascial release therapy, lymphatic drainage massage, Ayurvedic therapies including cleanses and PanchaKarma treatments, essential oils, CBD, 5 FMTs, and others. I worked extensively with a functional medicine doctor who I credit with getting me from high-moderate to ‘mild’ ME via 18 months of neurotransmitter/metabolic/mitochondrial/ hormonal/microbiome supplement treatments. A big part of this was resetting my HPA axis which was severely dysregulated. Additionally, the five at-home FMTs I did last year greatly helped with my various gut issues along with following the FODMAP diet. For pain, I see a CNS-based chiropractor, use an infrared heating pad, stretch and do light yoga. All of this has been an enormous out of pocket expense but very worthwhile in achieving a more functional level. I still have to pace all activities carefully and cannot overdo without crashing. But the crashes aren’t as bad or long-lasting now.

Gone are the days of seeing friends, going out, traveling, wine tasting/judging, visiting our family winery. But I have found acceptance and am able to enjoy a simple life with the love and support of nearby family members and my young cat, who takes a lot of energy!