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Geoff’s Narrations

The GIST

The Blog

 

Thanks to Jen X for providing her remarkable story. Jen’s story likely fits a subset of ME/CFS patients but may be particularly significant given her family history of ME/CFS and ME/CFS-like illnesses.  Cort

THE GIST

  • In 2006 at age 28, while traveling in Guatemala, a sudden, severe flu-like infection triggered a severely debilitating case of ME/CFS in Jen. Her life as she knew it was over: working, school, playing in bands, dancing, hiking, camping, and her social life abruptly disappeared.
  • Over the past 18 years, she’s experienced all the horrors of severe ME: treatment-resistant infections, frequent drops in blood pressure, paralyzing weakness, vertigo, dizziness, and severe head and neck pain. At one point, her nausea became so bad that her excessive vomiting caused her esophagus to tear and bleed. She often lacked the strength to sit upright or stand, and was often too weak to eat, speak, or move. An infectious disease workup revealed recent infections from multiple pathogens.
  • During her worst episodes, she experienced what she described as “internal shakes”, an invisible high-frequency vibration, which she said felt like the energetic bonds that held her molecules together were about to break.
  • With her father dying from gastrointestinal complications possibly stemming from ME, her brother dying at the age of 45 from immune failure caused by ME, his only child dying as a baby from immune failure, and her son with a primary B cell immunodeficiency, her ME appears to have a strong genetic component.
  • She also has an inherited connective tissue disease, craniocervical instability, and brain stem compression – which, in her case, appears to be a separate condition from ME.
  • Over the next 18 years, she spent 90% of her time in bed, consulted with many ME/CFS and other specialists, underwent hundreds of tests, and exhausted every treatment possibility she could think of (see blog) to get well, to no avail.
  • An extensive immunology workup done during a small clinical trial of hyperbaric oxygen revealed, however, alarmingly high levels of cytokines in over half of her interleukin pathways. Finally, she had a target – an ongoing cytokine storm.
  • Nothing she threw at her cytokine levels, though (biologics, antivirals, immunomodulators, steroids and other treatments) touched them until she turned to Rinvoq, a potent JAK1 inhibitor that had been introduced in 2019.
  • At first, Rinvoq (15 mg daily) left her feeling even worse. After two months on the drug, her dangerously low white blood cells caused her to stop the medication. To her surprise, for the first time most of her cytokine levels returned to normal, but she felt no better.
  • In March, 2024, a few weeks after stopping Rinvoq, though – with her white blood cells returning to normal – the switch that flipped in 2006 flipped back again. Her post-exertional malaise, dysautonomia/POTS, profound weakness, and paralyzing exhaustion all disappeared (!). Her 18 years of severe ME was over.
  • She can now hike with no PEM, walk, travel by plane, cook, clean, stand for long periods of time, shower often, take her kids to the grocery store, socialize, garden, and play the piano. An allergic reaction to the sun also disappeared.
  • Eight months later, her cytokine levels continued to normalize, indicating that her 2-month bout with Rinvoq is continuing to provide further benefits. While she still has a connective tissue disorder, her ME is gone. She said she feels like she’s been raised from the dead.
  • To encourage further research into Rinvoq and JAK1 inhibitors in ME, Jen plans to publish a comprehensive case study soon.
  • A blog exploring Rinvoq and JAK inhibitors is coming up.

My History

In 2006 at age 28, while traveling in Guatemala, a sudden, severe flu-like infection brought me a life altering and incapacitating affliction – myalgic encephalomyelitis (ME) – a complex, multi-system illness characterized by profound fatigue, post-exertional malaise, and various neurological and immunological abnormalities. It is often triggered by a pathogen.

I clearly remember the very moment my insides seemed to melt, the lights flickered out, and I collapsed at an outdoor market. From that moment on, I was deathly ill, experiencing numerous treatment-resistant infections, frequent drops in blood pressure, paralyzing weakness, and razor blade-like pain and vertigo when I attempted to eat. I had head and neck pain so severe that it left me wondering how I was not in a state of shock or coma. The nausea became so bad that eventually my esophagus tore and bled from excessive vomiting.

Pathogens

Tests indicated that Jen X had been infected with multiple pathogens.

I was profoundly weak and dizzy, suffering from “spells” that felt like a lightbulb flickering on and off in my body, leaving me trapped and motionless wherever I fell and cutting me off entirely from any sense of aliveness. On most days, I lacked the strength to sit upright or stand, often too weak to eat, speak, or move at all. My body had shut down. Even on my strongest days, I could manage to shower while sitting in a plastic chair, but lifting my arms to wash my hair was beyond my capabilities.

Months later, an infectious disease workup revealed recent infections from multiple pathogens – details I will elaborate on in my forthcoming case study. My life as I knew it ended. School, work, my ability to generate income, playing in bands, dancing, hiking, camping, and my social life abruptly disappeared. On the brink of death, I spent the next several years confined to the same bed, staring out the same window, watching the seasons change while enduring relentless, torturous symptoms that ravaged every system of my body. Though feeding tubes and PICC lines were strongly recommended, and it was acknowledged that I was gravely ill and beyond the scope of current medical understanding, I was ultimately left to navigate the search for answers on my own.

I am now 46 and have spent over 18 years in a state of moribund illness and misery, with 90% of that time bedbound. The most incapacitating symptoms (the full list is far too extensive) have been POTS/dysautonomia, profound weakness, paralyzing near-death level exhaustion (described as metabolic paralysis), and utterly debilitating post-exertional malaise. This “weakness” transcends mere physical fatigue, it manifests as cellular-level frailty, as if my blood is water, my heart struggles for even a single ATP to sustain its next beat, and I don’t have the strength to even open my eyes. People in the ME community call the most severe cases “a conscious coma” and “a living death”.

Many treatments tried

Many treatments were tried – to no avail.

During my worst episodes, I experienced what I can only describe as “internal shakes”, an invisible high-frequency vibration, which felt like even the energetic bonds that held my molecules together were so weak they were about to break. I imagined myself melting like liquid into the forest floor.

Over the years, I sought help from nearly every medical specialty, exhausting countless treatments. I tried a vast array of pharmaceuticals including antivirals, immunomodulators, biologics, anti-parasitics, antirheumatics, antibiotics, antihistamines, steroids, hormones, antiemetics, stimulants, anticonvulsants, and more. In addition, I tried homeopathy, naturopathy, traditional Chinese medicine, acupuncture, chiropractics, herbology, detox cleanses, shamanic ceremonies, ecclesiastical blessings, psychedelics, Rife machine, hyperbaric oxygen therapy, several diets, and on an on. In my quest for answers, I underwent hundreds of tests: blood draws, biopsies, full exome sequencing, MRIs, CTs, ultrasounds, IV treatments, procedures under anesthesia, the list is pages long. Additionally, I have inherited connective tissue disease, craniocervical instability, and congenital retroflexed odontoid with brain stem compression, compounding the complexity of my condition.

Notable Family History

genetic mutation

A strong family history suggests a genetic weakness is present.

My family’s medical history reveals a stark genetic component. My father suffered from the same debilitating illness, ultimately becoming bedbound and dying at age 54 due to gastrointestinal complications likely stemming from ME or one of its major comorbidities, such as connective tissue disorder. My brother endured 17 years of illness before dying at age 45 from immune failure caused by ME. ME/CFS is explicitly noted on his death certificate as the root cause of his passing. Tragically, his only child died as a baby from immune failure, and our sister died as a baby due to complications of spina bifida. My own son has primary B cell immunodeficiency.

What Led Me to This Medicine

Since the onset of this illness, I had been relentlessly searching for answers, experimenting with treatments, and consulting with top researchers and physicians around the country, all of whom were still searching for the answers themselves. I participated in numerous studies and trials, but nothing brought relief. In 2020, I joined a small research initiative testing hyperbaric oxygen therapy as a treatment for ME. During this trial, a research scientist conducted an extensive immunology workup, exploring tests beyond standard practice. A cytokine multiplex 18-panel test revealed alarmingly high levels of cytokines in over half of my interleukin pathways. Finally, I had something new to pursue.

Cytokine storm

Jen X had been suffering from a cytokine storm for 18 years. Now she finally had a target.

I began monitoring my cytokine levels while trialing various medications. Despite trying numerous biologics, antivirals, immunomodulators, steroids, and other treatments, each panel consistently showed the same elevated cytokines. Nothing was touching them. I was trapped in a never-ending cytokine storm. After a year-long trial of an injected biologic and an extended course of prednisone both failed, I decided to pursue a more potent option: Rinvoq, a JAK1 inhibitor that had only recently come to my attention, and hadn’t even been available until 2019, more than a decade after I became ill.

The Treatment

I gave my body a break from meds for a few months, and then in December 2023, I began taking Rinvoq at a dosage of 15mg daily. I felt awful, worse than my baseline. I kept antivirals on hand (famciclovir) in case I saw signs of viral reactivation. After two months of complete misery without any sign of improvement, a CBC showed my white blood cell count had dropped to dangerously low levels, leading me to discontinue the medication. To my surprise, the follow-up cytokine panel showed that most of my elevated cytokines had returned to normal levels – the first time I had witnessed such a change in four years of tracking. Even so, I didn’t feel any better.

Remission

Key to illness

After many tries Jen X found the key to her illness.

A few weeks after I stopped taking Rinvoq, once my body had time to recover from the side effects and my white blood cell levels returned to normal, I felt an undeniable shift, the crushing weight of ME was lifted. The switch that had been flipped in January 2006 that sent my body to the depths of hell was flipped back in March 2024. I was alive again; it felt like a miracle. The most debilitating of my symptoms – PEM/PENE, POTS/dysautonomia, profound weakness, and paralyzing exhaustion – disappeared.

For the first time in over 18 years, they were just gone, and eight months later they have not returned. Recent panels show my cytokine levels have continued to normalize many months after stopping Rinvoq, suggesting long-term benefits from the treatment. My body had a cytokine storm raging for years and a JAK1 inhibitor ended it when nothing else could. It fixed something. I am in remission. Rinvoq made my body work the way it worked before I got sick, which is to say I still have significant connective tissue disease symptoms (EDS) that I’ve had lifelong, but the ME is gone. This is important to differentiate because ME and CTDs are sometimes seen as one and the same. I feel like I have been raised from the dead.

Case Study

I plan to publish a case study in the near future that will go into much greater detail of pre-remission lab values, and symptoms going back to the initial onset, and post-remission lab values including cytokines, NK cells, viral and other pathogen titers, B cells, T cells, and immunoglobulins. I hope this study will encourage further research on JAK1 inhibitors for the treatment of post-infectious illnesses ME and Long Covid. If I had stopped at one month, would I have had the same benefit? Would a larger dose for a shorter time do the same thing for me? Clinical trials would help sort this out.

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Pre-Rinvoq Function Level

90% bedbound, only able to shower about once a week with major payback, could not cook, clean, sit upright, have conversations, run errands, grocery shop, participate in holidays, sit at a dinner table, talk on the phone, or get to doctor appointments most of the time. I have memories of collapsing on the kitchen floor while feeding my baby children in their high chairs and being stuck on the floor below them while they peered down at me, I felt so helpless. When waking in the morning, I felt poisoned, fluish, paralyzingly weak with extreme nausea for hours. Trying to get up would often result in a collapse and I would spend sometimes up to 30 minutes trying to gather the strength to get off the floor and onto a couch or bed while trying not to vomit. I had a very low quality of life, well below poverty level income, and not nearly enough help.

Post-Rinvoq Function Level

I can hike with no PEM, walk, travel by plane, cook, clean, stand for long periods of time, shower often, take my kids to the grocery store, socialize, garden, and play the piano. My 14 year old said, “You’re almost like a normal person now.” When I developed ME, I also suddenly became allergic to the sun, a rare condition called solar urticaria. If sunlight touched me anywhere between my collarbone and hips, I broke out in large itchy hives all over my torso. I had an epipen because of its severity. After taking Rinvoq, it’s gone, I am cured of the sun allergy.

Hope

I really thought there was no chance for me. My family members had died young, I had been sick for so many years and had tried so many things. No one had the answer. I was fighting with my entire being to stay alive, but I had given up hope that anything would ever come along in my lifetime that would make me better. It’s still hard to believe, my kids say I seem alive again, I don’t live in my bed anymore, and my voice is stronger. They said the fact that I took them to the grocery store was evidence I was better; I had not been able to do that most of their lives. Friends, family, and physicians have all seen it without me telling them first. They have noticed immediately the change in me and they say they feel like they are meeting a different person. I look different, sound different, and have my life force back. This is the real me that has been buried underground for nearly two decades, finally free. I hope this med can do the same thing for others with post-infectious chronic conditions.

Jen X

  • A blog on Rinvoq and other JAK/STAT inhibitors is coming up

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RECOVERY Piggie

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All recovery stories are remarkable, but Jen’s ability to go from severely disabled to recovered because of one drug really stood out. Her story also demonstrates how different Health Rising’s approach to recovery is.

Look around the web and you’ll see a lot of neuroplasticity recovery stories – and good for them (Health Rising has them as well) – but not much else. Most of HR’s recovery stories, on the other hand, are biologically driven. This isn’t by design – these are simply the recovery/recovering stories that get sent to us or I come across on the blog.

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