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The GIST
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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.
Tests indicated that Jen X had been infected with multiple pathogens.
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 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
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.
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
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.
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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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.
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Wow! That is so great to read. You really put the hard work in to put ME into remission, Jen!
Amazing. It is so brave to stay on a drug that made you feel worse…
Interesting you got sick in Guatemala, a relevant subset of patients seem to get sick abroad. Thinking of Whitney Dafoe. I got sick in Nicaragua (two times! Dengue and zika)
Jen, if you read this comment by any chance, I would love to ask a very personal question. Did you have your kids after you became sick? I know you likely wont read this and if you do might not be comfortable answering. I totally understand. It is just something that I am still considering and I would love to know if you were able to have Kids while being so severely affected.
Thank you for your inspiring Story ❤️
And thank you Cort for bringing us the story
It would be really interesting to see if getting ill in another country – particularly a country with lots of pathogens we don’t usually see – is associated with a more severe illness…
It really would be. Maybe we have to group sars cov 2 as such as well?
Makes me think of Roger King too (author of Love and Fatigue in America) who traveled many countries during his career.
My fatigue/ME/CFS symptoms were severely exasperated after a trip to the hinterlands of Nepal (Mustang) after catching a ‘cold.’. Since I also have Ehlers-Danlos, which also has associated fatigue, I’m not sure how to parse out my symptoms.
Before the trip, I also had a live polio vaccine (this was a very primitive place and so I got all kinds of vaccinations). This live vaccine was later discontinued because it could morph into a type of polio years later–although my immunologist doesn’t think this is the case with me even though I have bouts of mild ataxia while walking.
I had, in the beginning, many similar symptoms as Jen, which lasted for about 14 months. Slowly, gradually I regained strength, but have never returned to my normal (EDS influenced low energy) state.
I do wonder if Jen’s ‘inherited connective tissue disease” could be Ehlers-Danlos? It would be helpful for me to know.
Mine started from a serious virus I caught on holiday in Spain – nowhere fancy, no jungles – just the Costa Del sol. Before I went on holiday I was working out five times a week and playing semi professional football and hiking on weekends while using a bicycle as my transport. Super fit guy. Then I caught the virus and because that knocked me out so much I fell asleep in the midday sun and think I got sunstroke as well. Spent the next two weeks hallucinating and feverish. I didn’t feel well for another six weeks but then realised I could no longer work out or play sports and it was downhill ever since, slowly getting worse each passing year!
My road to ME definitely started after I got sick in Belize. I’m an archaeologist and was living in the remote jungle on and off for years and had both drug resistant giardia and malaria during that time. What I don’t know is if it was the infections themselves or the multiple, months long rounds of antibiotics that I took that triggered my slow decline (beginning with rashes and new allergies, then fatigue and shaking after catching oral Herpes at my son’s preschool, and eventual disablement/becoming bed bound from Long Covid with full PEM, brain fog, etc).
I went down with the virus that began my me/cfs journey in Acapulco Mexico in 1994. The passengers boarded the cruise ship I was working on at the time 3 days late. I was a cabin steward. They were ill and a third of the ship then went down with this mystery virus. I’d worked there 10 years and never experienced anything like it. I often wonder if anyone else on that cruise didn’t recover either.
I became sick after taking a patient dying from HIV/AIDS to his small village in Myanmar.
Within 2 weeks I had severe double vision and weakness especially on my right side. No pathogens were found. I continued to decline but slowly. Within 2 years I was in a wheelchair. Since then I got increasingly worse. I’ve been bedbound then able to walk 15 minutes. Up and down. I also get the internal vibrations like right now. I never realized it may be a symptom. I never feel alone in my illness with health rising. Thanks from the bottom of my heart.
🙂
I too often wonder if I can still consider having children. It seems that lots of people with ME/CFS do, and I wonder how they are able to manage. It would make for an interesting discussion. Does anyone know of any resources?
I think there is an older post here @ healthrising about a conference (maybe at Bateman Horne?) where women with ME and their partners are talking about the decision to have children.
I would honestly advise against reading to many opinions from reddit or different forums, they tend to not be very balanced but very negative. And a lot of quite ableist posts about how people with ilnesses should in general never have kids…
I had a child before I had ME at least not the bed bound kind. After 42 hour vacuum assist delivery I started coming down with ME symptoms that quickly became severe including unberable sound and light senitivity.really In spite of that I looked after the new born all by myself without help as husband worked 2 jobs. I ended up completly bed bound. My daughter suffered alot because I could no longer look after her and my parents raised her for at least 5 years. She only came home on weekends as I could not handle any noise or visitors so we could not hire a nanny. It broke my heart that I could not look after her. Never got to take her to shcool, see any of her performances or take her shopping or even watch a tv show with her due to sensory symptoms. I feel she also has emotional wounds due to the situation. So in my opinion I don’t think if fair to bring child into this word if your situation is like mine. If your ME gets worse think of the effect that would have on the baby. It is hard breaking and alot of guilt for the mother. If I didn’t have a child I don’t think I ever be this sick and I woudn’t hurt another human being who wanted to be home with mommy so bad but I couldn’t bear her being home due to illenss. It is very hard for me to talk about this.
OMG that’s a horror story and my heart goes out to you. I have three kids and struggled after the third. I could barely get up the stairs. Somehow I improved for ten years then boom very sick again.
I am so glad you were able to have the 10 years with your children while you improved. I am also thinking if someone id severe or becomes severe after childbirth. If their spouse or parents (caretakers) pass away 1st than some children feel obligated to be the caregivers and they never get to marry or have kids on their own as they are stuck working and loooking after a sick parent. I met a couple of people like this and I felt so sorry for the. Ofcourse some kids will not care. but still I feel with ME that is severe is better not to have kids.
I agree with you. One of my parents had ME/CFS, like his own mother. He just hoped his spouse would take care of the kids, on top of having a job and taking care of the house. That did not work out well. My sibling and I had neglectful, toxic parents, who then expected both their ME/CFS adult children to take care of them during old age…
I probably would not have been so ill if at 15, there was someone who cooked for me, when I was unable to stand up long enough, who would do my laundry, who would take me to the doctor… Instead I was gaslighted because I could not do enough chores, go to school using public transports, etc.
Bone-crushing exhaustion and pain make people emotionally unavailable. Young children need parents who are emotionally there to develop secure attachment, not only to their own parents, but also to any other person they’ll meet in their life. Children just do not understand extreme fatigue, sensitivity to noise/light. It is naive to believe they’ll “get it”.
ME/CFS patients are unable to explain what this disease is to another adult, so how can they expect a child -with fewer cognitive abilities- to understand? Children will just adapt by constantly walking on eggshells to detect a ‘good’ or ‘bad’ day (aka. their brain will always be on high alert to detect clues for what they can and cannot do), to deal with neglect, with parentification, etc. I know because I observe my sibling’s children doing that once their mother has developed ME/CFS.
This is the perfect recipe for childhood C-PTSD… on top of passing the defective genes. ACE (adverse childhood experiences) are associated with an increased risk of diseases in life.
I once read the story of some people with EDS who wanted children. I find that mind-boggling to knowingly bring into the world children who will have a high chance of developing such cruel disease.
I did not have children because I realised that it was a bad idea for them, who would not have a happy childhood with a ill person like me, and for me, who would have extra workload and worries. And this, even before the hereditary aspect of the issue. My sibling and I are at least the 4th generation with this illness. My sibling had her children before developing ME/CFS. She told me many times she regretted having had children even though she loves them.
I also remember the story of a young woman with ME/CFS who decided to have a baby. She was talking of her struggling. Except feeding, there was only two options for that kid every day: a bath OR a 15-minute stroll, because the mother could not do more… This is so sad.
There was also a anecdotal comment I read online (20 years ago?) from a OB-Gyn, who was saying that each of his ME/CFS patients who gave birth had a child with issues, like autism, etc. It was not a study or anything, just something that he observed during his career. I asked the question to De Meirleir at that time, and he said that too. So obviously, there was something. KDM’s daughter and mother have ME/CFS.
Jen — thank you for sharing your story in so much detail, wishing you all the best!!
Congrats, Jen fascinating story,
Would be interested in knowing a bit more about your cytokine storm.
So you had a consistent very high cytokine panel.
What strikes me is that normally a cytokine storm comes with fever, high heart rate, etc.
– How was your cytokine panel different from a typical cytokine storm ?
– specifically interest in your TGFB values
– and do you think it could be linked to T-cell/Nk-cell exhaustion there is no real high fever reaction ?
– or were you feverish all the time?
After the initial insult where I did have a very high fever, I stopped being able to produce fevers altogether. Even when I had Covid (4 times) I was very sick but no fever. Yes there is a lot more to delve into with cytokines, nk cells, T cells, immunoglobulins and genetics, I will elaborate more on the changes I saw in these labs in more detail in the upcoming case study.
I’m looking forward to your detailed case study (how will you share the link?)
– there is a specific value to it when you have these detailed blood panels
Lack of high fever reaction (versus the flu-ish feeling) seems typical for a subgroup. IMO specially, the long-term more severe.
I also never get it.
PS if you want to discuss more in detail, I just opened a thread on Phoenix Rising. There are some people trialing – and I myself have taken 4 months of Filgotinib
Do you have a link to the thread on Phoenix Rising?
Here
https://forums.phoenixrising.me/threads/remission-from-rinvoq-jak-stat-inhibitor.92818/#post-2469513
And here can read more Experiences
https://forums.phoenixrising.me/threads/filgotinib-jak1-inhibitor-future-of-cfs-me-treatment.54175/page-5#post-2469511
Curious if you ever had IVIG as part of your long list of treatments? I’m trying to figure out if my failure to get results from it means “don’t waste time with more immune treatments”, or if something like Rinvoq acts differently and may be worth the energy to revisit.
Great point about not being able to get fevers! During the early years of my illness while bedbound my doctor told me the day I start getting sick again (normal colds, flu’s, fevers, etc), I would know I’m getting better.
For years I couldn’t catch what everyone else in the household would get because my immune system was kicked up in high gear.
After moving into a clean environment and allowing my immune system to calm down, I started getting sick again, fevers included!
So, I think taking into consideration the state our immune systems are in at any given time might be important.
Hi Jen, thank you for sharing all that. I stopped being able to mount a fever response after getting sick with ME/CFS. Now, over a decade later, the ability to mount fever occasionally has returned but I can’t sustain it for long. It mounts and dies down within an hour, it feels, no matter how significant or prolonged the illness it. It’s hard to get infections diagnosed when you don’t have the fever.
Hi Jen thanks for your contribution and happy for your recovery.
May I ask when is this blog is coming out?
“ A blog on Rinvoq and other JAK/STAT inhibitors is coming up”
Also where would I find Thai case study:
“multiple pathogens – details I will elaborate on in my forthcoming case study.”
As you know many of us are stuck in the tick borne illness space thinking we must kill with abx, anti malarials, etc until kingdom come with no improvement.
Many of us stuck in this space would believe a Jak stat inhibitor would cause our pathogens to run amuck. It’s fair to realize that this frame of mind is conditioning from being sick for so long and this unshakable belief that it must be a pathogen at the root of all this just kicking us in the but daily. I to once thought like this, and although a part of me still does I can see the other side of the coin and appreciate why a jak stat inhibitor may work. I will even be so brave to say that we are all under the same umbrella, me/cfs, tick born illness, post viral syndrome, long covid, fibro etc, mold illness etc etc but we all lie on different parts of the spectrum. It all comes down to a dysfunctional immune system. The causative pathogen maybe be different and cause the initial insult but the kink in the immune to trigger such an illness is universal to all? Maybe?
Fantastic. Jen you did an amazing job sleuthing and trying to find what could possibly help your (our) illness. I’m hoping that the researchers and clinicians who read this will be able to use your story to help get clinical trials started.
Thank you Jen for sharing your fantastic and inspiring story—what an incredible saga and what amazing determination and focus you managed to hold through all those years of suffering! You made my day with hope, and hope that is not only based on your experience but on lab values that confirm it. Brava!
I look forward to your case study and where it will lead patients and the clinical and research community.
Fantastic!! Congratulations!! She may never know if it was the oxygen therapy or the drug or combination that worked, people have recovered with the oxygen I’ve read. Thrilled for her!! Xxoo
Thank you! The oxygen therapy was done about three years before taking Rinvoq. While hyperbaric oxygen gave me a very subtle boost for about 24 hours after a treatment, it did not fundamentally change my state of health like Rinvoq did.
Jen X – Congratulations on your recovery. I deal with EDS too (as may ME/CFS people do). In your post you seem to hint that you are still dealing with EDS issues. I wanted to throw out the recommendation to look at the Cusack Protocol, which a woman created that has fixed her, her family’s, and many other people’s EDS issues. I was beginning to start the protocol when I got sick from Covid, so haven’t given it a try yet but there are enough anecdotal success stories that it seems like it’s not BS. It really seems to help a lot of people with their connective tissue issues. There is a great facebook group, Ehlers Danlos Syndrome and the Cusack Protocol, that has all the information
Heck, looks like it can kill you dead, Rinvoq, not on my radar.ill stick with the ldn hourly.
Yep it’s a hard core drug that comes with serious risks including death. I was at a point where my quality of life was so poor I was willing to take the risk.
Yeah big risk, but very happy for you,,I believe I will get there eventually, I have a decent life now using low dose naltrexone unconventionally, 6mls every hour, I’m doing crystal therapy, and will be getting in the ocean too this summer, it allows me to do stuff like that, cook, clean, stand all day if I like, take short walks. Stay Well X
You take Naltrexone. Not low dose naltrexone. 100mg is NOT Low Dose Naltrexone. 🙂
It’s still low dose, each dose is low, it’s just more regular. Does it matter, it works!
Yes it does matter. You are taking 100mgs a day. Not the 3-6mg a day as prescribed for LDN. I’m glad it works. I hope you are getting tested regularly for signs of liver disease.
Yes I am Thanks for yr concern, 2 yrs in and liver is perfect, Take care.
I have mentioned it as naltrexone and ldn because it is both.
The reason doctors prescribed ldn like that is because they think it is the endorphin stage that is beneficial as it has been with other illnesses, when for cfs it is the preceding stage, when opiod receptors are blocked and calcium ion channels are opened, gligal cells are protected and cykotines are calmed. One day it will change, when enough people are getting same results hopefully. My goal is at this time to significantly reduce all stress to try to put ebv into remission which is the cause of my cfs.
Are you taking any anti-viral herbs/supplements for EBV? From Sciencedirect.comResveratrol inhibits Epstein Barr Virus lytic cycle, Luteolin inhibits Epstein-Barr virus lytic reactivation. I have a few other lists from Lyme community, many of which I have taken and still take when I suspect the EBV or TBD are rearing their nasty heads again. I’m praying you are right and the higher doses of Naltrexone will flip the switch for a lot of people! It’s certainly safer than Rinvoq! Glad you are watching your liver #s. Documenting all of this is really important for others in the future. 🙂
And depending on how much yr taking that proceeding stage is only about 1hr to 2 hrs. 1 for me.
Silly auto correct not proceeding PRECEDING
I understand yr concern, and I would caution severe patients to just jump into the protocol, that’s why caffiene with it Is helpful at first, I always say to people to proceed with caution and that I take no responsibility for others choices when they recieve my abstract. It’s taken me 2 yes to get here, and it’s always changing, evolving, I’m doing it 2 hrly now, but sometimes at 1hr.
You do the same thing I do, left out the “not”. 😉 “I would caution severe patients to just jump into the protocol”. I’m glad this is helping you feel better but sorry that it isn’t something that is a cure or more long lasting. I hope maybe the Rinvoq protocol (or something else) can be refined and will be a true “cure” soon! Happy Holidays!
Edit, to NOT just jump into the protocol, I went from once a day to twice to 3 times over a I period of time. Yes Happy holidays to you too, I cant do supps due to MCAS
I am very interested in your protocol. I thought LDN worked by temporarily blocking the opioid receptors which will stimulate your own opioids. But if you are doing it several times a day, I would think the effect would wear off. How long has it been working for you?
Hi Sarah, that’s how it works for some other illnesses, for cfs /ME it’s totally different, in the blockade stage the calcium ion channels are opened and then cells , organs etc recieve calcium, a body cannot function without it, we need sodium, magnesium, potassium and Calcium for muscles to work, and these channels are closed with cfs, google some of Griffith uni work, I just took it further, by chance and experiment and much investigation I worked it out, email if you want my protocol i presented at the ME conference in Australia. vgray1221@gmail.com
Yes reading things like that can put people off. Very rare though. And dose depends on how severely ill a patient is. Desperation is a powerful thing when weighing up risks.
Good to be aware that lots of drugs can kill. And lots of very common drugs we take and think nothing of have just as frightening side effects. Nearly all drug inserts (the printed paper that’s inside the box) will list horrifying possible side effects.
ibuprofen, lamotrigine, naproxen, penicillin, and anticonvulsants can cause ‘Stevens-Jonhson syndrome’ that’s a side effect that can kill too. rare too though
The main issue with a JAK STAT inhibitor is an increased risk of infection. So if you get an infection you stop taking it and our bodies soon should be able to fight it. If not, there’s plenty of medications for infection.
JAK STAT inhibitors tend to deplete neutrophils which fight fungi and bacteria. Which are usually treatable infections. The key is to keep an eye on your bloods to make sure the depletion doesn’t drop into a danger zone. It’s not as big an issue when you read the numbers, as very few people have severe adverse outcomes. And often those that do, didn’t go to the doctor in time to treat an infection.
Also practice good hygiene on JAK STAT inhibitors
I live with 2 dogs and yet I was on 2 times the standard dose of Baricitinib, then 3 times, then in the last week I was on 5 times the dose. I was also on 10mg of prednisone. Yet no infections. (Note I had checked the max toxicity dose testing of Baricitinib on humans)
Unfortunately I didn’t improve (I only did it for a month though). but I proved you can take very, very high doses of the drug without increased side effects.
My neutrophil levers were lower than the normal range but still well above the danger zone.
Interestingly, initially I was unable to tolerate Baricitinib because of drug hypersensitivity that many ME/CFS patients have. However I found that if I took between 7.5mg and 10mg of prednisone that made drug hypersensitivity completely vanish. It’s given me new hope that I’ll be able to tolerate future treatments for short periods,
To many of us who are stuck waiting very sick while hardly any drug research is happening, in a state of existence that is a hell hole between life and death, (The disease is nicknamed ’The Living Death’ for good reason). Many of us see our lives as dead already. Meaning the drug insert risks don’t concern us as much. We take precautions of course.
But sometimes you have to break a fingernail to get the job done. lol
Next time I’ll take a high dose of Rinvoq for longer, but is very expensive
Believe me I am very sick without naltrexone every hour, cannot move at all, I know desperation very well! Good Luck.
I’m sorry to hear that. It is an awful disease.
Question on naltrexone, can I please ask what dose do you take every hour. I take morning and night but not much effect. But a more frequent dose like your doing maybe worth a try for us that haven’t had much success.
Thank you
Hey Bob, never worked for me until I upped the anti, about 5 mls every 1 to 2 hrs, it’s not perfect but it’s a better life with it, always proceed with caution, email me for my abstract vgray1221@gmail.com if u like.
Hi are you saying you take ldn hourly? Ca n you explain and how much ? I take it once a day before bed.
Leonie, you can take ldn more than once a day. Vanessa does it. I do it. I have read of others, too. This is something new, this protocol. I have posted comments on this blog before about it. There is a long exchange on Cort’s post here:
https://www.healthrising.org/blog/2024/11/14/exhausted_immune-t-cells-chronic-fatigue-syndrome/
when I answered Fay. Search for Ann1
I would post it again if you want me to. Just ask. The new protocol is based on research out of Australia. No clinical trials yet. I take ldn four times a day.
Ann1. Vanessa does not take LDN she takes Naltrexone. Low dose is usually 4.5mg/ day at the most. Vanessa is taking 100mg/ day in divided doses. Pleas eget you terminology correct. You are misleading people who think they can take LDN and get the same results as 100mg Naltrexone. And the side effects, etc need to be looked at and Drs need to know what you are taking as well! I’m not saying it doesn’t work. I’m saying you need to be careful suggesting people do something that could make them worse if they don’t understand what they are doing.
T Allen,
Low Dose Naltrexone is defined differently by different organizations. I have been taking 6mg every night for years. Read my long comment on the other blog post. I’m now taking A LOW DOSE of naltrexone (6mg) four times a day and finding relief.
Do a search for yourself and see if you can find others who are doing the same. Naltrexone tablets come in 50mg and 100mg. This is a prescription drug, prescribed by a physician. People with addictions take 50mg or 100mg every night. Long term.
This blog is filled with people who are doing something off-label or out of sequence or otherwise non-ordinary. 600mg of thiamine? We don’t criticize others for what they try. Desperation drives innovation.
Save your criticism for something else.
Vanessa is taking 100mg a day! Read what I said again, carefully. I am warning people to not take high levels of Naltrexone without knowing what they are doing. “Low Dose” sounds safe and it is if taken at prescribed levels. But if you take mulitle doses of LDN equaling 50-100mg a day, you need to be aware of side effects and make sure your DR knows! And re: thiamine? LOL! B vitamins are water soluble and taking too much just gives you expensive pee as compared to taking too much of ADE & K, the fat soluble vitamins, which can be toxic. And I DID warn about potential side effects of taking way too much thiamine. Please continue to be responsible in making recommendations to other people online who do not do research or understand what they read and just do what others say. Their lives are literally in your hands.
Hi Leonie, I now use 5 to 6 mls every 1 to 2 hrs, if you want my abstract, email me vgray1221@gmail.com
Vanessa does not take low dose Naltrexone. She’s taking 100mg a day divided over several hours. Be very careful about what you read about treatments, even on this website. I’m not saying it doesn’t work, obviously it helps her which is great. But she needs to stop misleading people about taking LDN because she isn’t.
No one is misleading anyone. I think you need to calm down.
I actually think the serious side effects of taking 50-100 mg per day of this drug is something people should know about. https://www.drugs.com/naltrexone.html
Common naltrexone side effects
Common side effects of naltrexone may include nausea, vomiting, loss of appetite, joint pain, muscle cramps, headache, dizziness, drowsiness, sleep problems (insomnia), tooth pain or cold symptoms such as stuffy nose, sneezing, sore throat, feeling, anxious or nervous.
Serious naltrexone side effects
Signs of an allergic reaction: hives, difficulty breathing, swelling of your face, lips, tongue, or throat.
Using opioid medicine while you are receiving this medicine could stimulate opioid withdrawal symptoms. Common withdrawal symptoms are craving for opioids, sweating, yawning, fever, stomach pain, vomiting, diarrhea, watery eyes, runny or stuffy nose, tingling, goose bumps, body aches, shaking, muscle twitching, trouble sleeping, feeling anxious, depressed, fearful, restless or uneasy.
Naltrexone may cause other serious side effects. Call your doctor at once if you have:
• weak or shallow breathing;
• cough that does not go away;
• new or worsening cough, wheezing, trouble breathing;
• severe nausea, vomiting, or diarrhea;
• severe pain, swelling, blistering, skin changes, a dark scab, or a hard lump where the medicine was injected;
• liver problems – stomach pain (upper right side), dark urine, tiredness, vomiting, loss of appetite, clay-colored stools, jaundice (yellowing of the skin or eyes); or
• symptoms of depression – unusual mood or behavior changes, loss of interest in things you once enjoyed, crying, new sleep problems, thoughts about hurting yourself.
This is not a complete list of side effects, and others may occur. Call your doctor for medical advice about side effects.
Why did you single me out for side effects? Why didn’t you go after the author of this post? Why didn’t you go after B Rob who posted above? Rinvoq side effects from drugs.com:
“Important warnings: This medicine can cause some serious health issues
Oral route (tablet, extended release)
Serious Infections. Patients treated with upadacitinib are at increased risk for developing serious infections that may lead to hospitalization or death.
Most patients who developed these infections were taking concomitant immunosuppressants such as methotrexate or corticosteroids.
If a serious infection develops, interrupt upadacitinib until the infection is controlled.
Reported infections include:Active tuberculosis, which may present with pulmonary or extrapulmonary disease.
Patients should be tested for latent tuberculosis before upadacitinib use and during therapy.
Treatment for latent infection should be considered prior to upadacitinib use.Invasive fungal infections, including cryptococcosis and pneumocystosis.Bacterial, viral, including herpes zoster, and other infections due to opportunistic pathogensThe risks and benefits of treatment with upadacitinib should be carefully considered prior to initiating therapy in patients with chronic or recurrent infection.Patients should be closely monitored for the development of signs and symptoms of infection during and after treatment with upadacitinib, including the possible development of tuberculosis in patients who tested negative for latent tuberculosis infection prior to initiating therapy.Mortality. In a large, randomized, postmarketing safety study in rheumatoid arthritis (RA) patients 50 years of age and older with at least one cardiovascular risk factor comparing another Janus kinase (JAK) inhibitor to tumor necrosis factor (TNF) blockers, a higher rate of all-cause mortality, including sudden cardiovascular death, was observed with the JAK inhibitor.Malignancies. Lymphoma and other malignancies have been observed in patients treated with upadacitinib.
In RA patients treated with another JAK inhibitor, a higher rate of malignancies (excluding non-melanoma skin cancer (NMSC)) was observed when compared with TNF blockers.
Patients who are current or past smokers are at additional increased risk.Major Adverse Cardiovascular Events. In RA patients 50 years of age and older with at least one cardiovascular risk factor treated with another JAK inhibitor, a higher rate of major adverse cardiovascular events (MACE) (defined as cardiovascular death, myocardial infarction, and stroke), was observed when compared with TNF blockers.
Patients who are current or past smokers are at additional increased risk.
Discontinue upadacitinib in patients that have experienced a myocardial infarction or stroke.Thrombosis. Thrombosis, including deep venous thrombosis, pulmonary embolism, and arterial thrombosis have occurred in patients treated with JAK inhibitors used to treat inflammatory conditions.
Many of these adverse events were serious and some resulted in death.
In RA patients 50 years of age and older with at least one cardiovascular risk factor treated with another JAK inhibitor, a higher rate of thrombosis was observed when compared with TNF blockers.
Avoid upadacitinib in patients at risk.
Patients with symptoms of thrombosis should discontinue upadacitinib and be promptly evaluated.
More common side effects
body aches or pain
chills
cough
ear congestion
fever
headache
itching, pain, redness, swelling, tenderness, warmth on the skin
loss of voice
runny or stuffy nose
sneezing
sore throat
unusual tiredness or weakness
Less common side effects
black, tarry stools
burning or stinging of the skin
chest tightness
difficulty swallowing
dizziness
fast heartbeat
hives, itching, skin rash
large, hive-like swelling on the face, eyelids, lips, tongue, throat, hands, legs, feet, or sex organs
lower back or side pain
painful blisters on the trunk of the body
painful cold sores or blisters on the lips, nose, eyes, or genitals
painful or difficult urination
pale skin
puffiness or swelling of the eyelids or around the eyes, face, lips, or tongue
ulcers, sores, or white spots in the mouth or tongue
unusual bleeding or bruising
Rare side effects
coughing or spitting up blood
difficulty with breathing
heartburn
indigestion
muscle aches
nausea
night sweats
pale skin
persistent non-healing sore
pink growth
reddish patch or irritated area
severe stomach pain, cramping, or burning
shiny bump
sudden high fever or low-grade fever for months
trouble breathing
vomiting of material that looks like coffee grounds, severe and continuing
white, yellow or waxy scar-like area
More common side effects
blemishes on the skin
pimples
Less common side effects
burning, itching, and pain in hairy areas, pus at the root of hair
difficulty in moving
muscle cramps, pains, or stiffness ”
B Rob posted above that he took baricitinib at FIVE TIMES the recommended dose. Why didn’t you go after him? Side effects of baricitinib from drug.com:
“Important warnings: This medicine can cause some serious health issues
Oral route (tablet)
Serious Infections. Patients treated with baricitinib are at risk for developing serious infections that may lead to hospitalization or death.
Most patients with rheumatoid arthritis who developed these infections were taking concomitant immunosuppressants such as methotrexate or corticosteroids.If a serious infection develops, interrupt baricitinib until the infection is controlled.Reported infections include:Active tuberculosis, which may present with pulmonary or extrapulmonary disease.
Baricitinib should not be given to patients with active tuberculosis.
Patients, except those with COVID-19, should be tested for latent tuberculosis before initiating baricitinib and during therapy.
If positive, start treatment for latent infection prior to baricitinib use.Invasive fungal infections, including candidiasis and pneumocystosis.
Patients with invasive fungal infections may present with disseminated, rather than localized, disease.Bacterial, viral, and other infections due to opportunistic pathogens.The risks and benefits of treatment with baricitinib should be carefully considered prior to initiating therapy in patients with chronic or recurrent infection.Patients should be closely monitored for the development of signs and symptoms of infection during and after treatment with baricitinib including the possible development of tuberculosis in patients who tested negative for latent tuberculosis infection prior to initiating therapyMortality. In a large, randomized, postmarketing safety study in rheumatoid arthritis (RA) patients 50 years of age and older with at least one cardiovascular risk factor comparing another Janus kinase (JAK) inhibitor to tumor necrosis factor (TNF) blockers, a higher rate of all-cause mortality, including sudden cardiovascular death ,was observed with the JAK inhibitorMalignancies Lymphoma and other malignancies have been observed in patients treated with baricitinib.
In RA patients treated with another JAK inhibitor, a higher rate of malignancies (excluding non-melanoma skin cancer (NMSC)) was observed when compared with TNF blockers.
Patients who are current or past smokers are at additional increased risk.Major Adverse Cardiovascular Events. In RA patients 50 years of age and older with at least one cardiovascular risk factor treated with another JAK inhibitor, a higher rate of major adverse cardiovascular events (MACE) (defined as cardiovascular death, myocardial infarction, and stroke) was observed when compared with TNF blockers.
Patients who are current or past smokers are at additional increased risk.
Discontinue baricitinib in patients that have experienced a myocardial infarction or stroke.Thrombosis. Thrombosis, including deep venous thrombosis and pulmonary embolism, has been observed at an increased incidence in patients treated with baricitinib compared to placebo.
In addition, there were cases of arterial thrombosis.
Many of these adverse events were serious and some resulted in death.
In RA patients 50 years of age and older with at least one cardiovascular risk factor treated with another JAK inhibitor, a higher rate of thrombosis was observed when compared with TNF blockers.
Avoid baricitinib in patients at risk.
Patients with symptoms of thrombosis should discontinue baricitinib and be promptly evaluated.
Serious side effects of baricitinib
Along with its needed effects, baricitinib may cause some unwanted effects. Although not all of these side effects may occur, if they do occur they may need medical attention.
Check with your doctor immediately if any of the following side effects occur while taking baricitinib:
More common side effects
body aches or pain
chest tightness
chills
cough
difficulty in breathing
ear congestion
fever
headache
hoarseness
loss of voice
muscle aches
pain or tenderness around the eyes and cheekbones
runny or stuffy nose
sneezing
sore throat
trouble in swallowing
unusual tiredness or weakness
Less common side effects
black, tarry stools
bladder pain
blemishes on the skin
bloody or cloudy urine
burning, itching, and pain in hairy areas, pus at the root of the hair
chest pain or tightness
cough producing mucus
difficult, burning, or painful urination
frequent urge to urinate
itching of the vagina or outside genitals
lower back or side pain
pain, redness, or swelling in the arm or leg
pain during sexual intercourse
pains in the chest, groin, or legs, especially calves of the legs
pale skin
pimples
severe headaches of sudden onset
stomach pain
sudden loss of coordination
sudden onset of slurred speech
sudden vision changes
thick, white curd-like vaginal discharge without odor or with mild odor
trouble breathing
unusual bleeding or bruising
Rare side effects
anxiety
burning or stinging of the skin
coughing or spitting up blood
dizziness or lightheadedness
increased weight
night sweats
painful blisters on the trunk of body
painful cold sores or blisters on the lips, nose, eyes, or genitals
sudden high fever or low-grade fever for months”
This blog is filled with people who have tried novel treatments, novel doses, novel dosing schedules, and not once did you play doctor and say, “But that’s not the standard regimen!!!” These people are being prescribed these medications by physicians, so therefore they are being monitored by definition. Your criticism is misplaced.
Thank you, I do hear your point . My advice to others is if you have a mild or liveable form of this disease, not to take as big a risks. Those people should wait for more proof and information on effectiveness and safety. Because they still have some quality of life worth protecting.
Yes I too have read all the safety data on the meds, and the toxicity dosing trials before starting any drug.
The idea of a JAK STAT inhibitor for an ME/CFS patient is short term course. Most the side effects and complications for the use of this class of drugs is for long term use in Rheumatoid arthritis patients.
So we can scrub a lot of those scary side effects away. The key is to keep an eye on the short term possibly complications.
I’m on deaths door anyway. My life is over. I have ‘The Living Death’ so if I kark it, I don’t care. As what’s live fie. Not even my siblings or friends seem to care, as they never visit, so I never see them, and they never call. Some texting
instead. But I have to limit how many texts I can write. Typing is paced rests between segments (as I’ve done in this comment)
Anyway if you get side effects depending on what they are you either reduce the dose or stop.
I also track my bloods, liver kidney function, lipids, full blood count, especially neutrophil count, etc, etc. it’s all free where I live, the phlebotomist even comes to my house at no charge, so I get the works when trying a new med. the end of that 30 days the neutrophils had dropped like expected, but were still well above the danger zone.
Here’s the irony though, it was advice from doctors to do Graded Exercise Therapy that severely worsened my condition. (And later a flu vaccine worsened if further) so there is no advice on ME/CFS that I’ll take from a medical professional again, it was their appalling advice that permanently turned mild liveable ME/CFS into severe and unliveable.
We know the severe end of this disease is worse than most other severe diseases. So because of terrible medical advice, I now have no life, no family, no friends, no future. I live in a caravan that’s disintegrating in a disgusting mess.
I suffer daily with near unbearable sickly symptoms.
Unsurprisingly I sometimes consider leaving this world, but you know what keeps me here… HOPE that the next medication might work. So I’ll take the risk. My body, my choice. No one has any better ideas that work. So drastic times call for drastic measures.
And the good thing about people like us who try different drugs is one day we might just strike gold and start a recovery revolution. Or If I kark it, well I won’t know will I. So I won’t care lol
B Rob
I understand. Best of luck to you. I hope this one is the one. Is there anything any of us can do for you?
I try almost everything I hear about. Some work, some don’t. I keep the ones that work and stop the ones that don’t. With naltrexone four times a day and the rest of my weird supplements, I can stand, I can walk, I can go outside and walk the dog. I’m grateful for this. I don’t really care if they fry my liver, or my kidneys, or whatever because I’ll go out standing, rather than lying in bed in a dark room scared to death of side effects. I’m 76. I’m not afraid any more.
I spent my working life a slave to modern medicine – I taught nursing students in the U.S. and Canadian universities. I taught them to live and work in the medical paradigm. No more.
Please tell us how your experiment goes, ok? If you can. I’ll be thinking of you.
The dose per hour is 6mg . She’s just not waiting hours of waisted time with no naltrexone in her system. She’s topping it up before it fades. That low dose taken regularly, because she knows what I know, naltrexone is in the body for a short period of time. Around 4 to 5 hours is the half life of it.
So no harm in getting another dose at the time it’s at half life. 6 mg is on the high end of LDN, the frequency is more. Still in my book it’s low dosing. but it’s taken a lot more frequently, making it a daily standard dose spread over a day:. . Taking the whole pill in one hit, now that’s standard dosing, and again still leaves the body in around 4 to 5 hours hours
To conclude Vanessa is maintaining a moderate dose via lots of low does
Verdict it’s low but way higher than most others and I’m willing to give it a crack. Maybe 4 hourly, at 4 mg.
… because to get the job done you have to break a fingernail
Good luck! Let us know how it goes and please keep an eye on your liver function #s. Keeping a journal so you know exactly what you took and when will be critical in helping you figure out the optimum dosing and timing as well as convincing Drs this works (or doesn’t) in the long term. Thanks!
Se my post to Ann1 on side effects. Be careful!
Fascinating story! Congratulations on your remission, Jen.
And thank you so much for sharing it – I hope it will be helpful information to Health Rising’s researcher audience – to get to the bottom someday of which subset of ME patients could be responders like you.
I’m looking forward to reading your upcoming case study & having it be part of the medical literature.
Thank you Jen for sharing your story of hope! (And Cory as always!)
Is there anyway you could share a list of the 18 cytokines that were tested please? It could be very helpful..
It increasingly amazes and saddens me that all patients with ME/post-viral illness, Fibromyalgia, and Long Covid are not immediately offered such a detailed cytokine panel in the clinical setting as Jen was offered in the research setting. These tests clearly exist and are considered valid enough to be used for researching new medications/treatments, and given that regular blood panels and inflammatory markers are normal (or even low) for most of us, I just don’t understand this basic gap in diagnostics on the ground in the real world clinical setting.
Instead patients get years of gaslighting from most doctors and told “all” your blood tests are normal, it’s insane really that it’s not standard and accessible now.
For myself the only cytokine tests I’ve had access to are the Incelldx long Covid panel, which did turn out to be very useful as my rheumatologist was familiar with the sCD40l which is often seen elevated in autoimmune diseases like lupus and sjogren’s disease, and has been a useful part of the puzzle for me (along with a few other abnormalities), but if I had not paid to have this tested privately, and if I had not stumbled across it, it would never have been offered to me by rheumatology or any other specialism for that matter, even though they know it can be elevated in these post viral autoimmune illnesses. How many people with post-viral illness unknowingly have elevated sCD40l or other elevated cytokines but are potentially even gaslighting themselves!
Keep up the great work Cory and thanks for sharing your story Jen, I hope you can catch up on all the living you’ve missed out on!
Debbie exactly! The gap between research and clinical practice has been causing all of us harm and it’s why it took 15 years to even get the panel done in the first place. No doctor I saw ever suggested it. My dear brother used to say before he died “we die with normal bloodwork”, and that’s because it’s the wrong bloodwork!
EXACTLY…that’s why I keep wondering what has been really going on all these years with the medical system…
Was the medical system set up this way to keep people sick?
Who are these people that sit in these high positions and make all these blood panels and decisions
I’m starting to wonder if the actual results of blood work is being fudged as well
Somebody needs to be investigating all of this!
In this country, if it wasn’t for A fellow name Jim Wilson, that started Canlyme🇨🇦, we’d all still be left in the dark and lied to about the prevalence of lyme disease here in Canada.
Jim recently passed.What a CRUSADER for the lyme community!
I’m living proof the system is against us, not for us
I was about to post but you said all I wanted to say Debbie. I went to Stanford having heard it was so good for CFS and only got some interleukin and antibody levels and sent home with an anti viral which did no good. This was 11 years ago maybe it’s better now but what a disappointment then. Hopefully one day there will be ME centers full of curious research scientists!
So happy you got your life back Jen and thanks for sharing your story. Even though you were in various studies seems a lot of what you did was your own research and trial and error, and even finding, enrolling and participating in the trials and studies is a lot. Kudos to you and thank goodness that doc was part of the hyperbaric study.
I’m wondering if anyone has compiled a list of diagnostics which will likely not be offered but which can be sought so that no stone is left unturned. Likewise a list of drugs and why they theoretically should be tried. It would make a helpful guide and a balance to the media/physician repeated “poorly understood” trope.
There is a list of diagnostic tests available here:
https://drive.google.com/file/d/1Yu79EYxQIwNVER5tErp7LH7KY8pI8S_e/view
This comes from the excellent U.S. ME/CFS Clinical Coalition that Klimas, Bateman and other top doctors are part of. They have more resources for diagnosis and treatment on their website at: https://mecfscliniciancoalition.org/resources/
You’re a star, thank you.
Thank you for sharing your story Jen. Very inspiring.
I wish you every good blessing for your future.
Thank you also to Cort for all you do and the hope you bring us
I have 1 son who has had ME/CFS for 10 years. He is currently moderate functioning so can work at a computer job but is constantly fatigued and has other ME symptoms. Nifedipine has helped him for last 5 years.
Other son has Ulcerative colitis and NO ME/CFS. This son failed all therapeutics to treat his UC until RINVOQ arrived. But unfortunately, the standard 30mgs dose did not help him. He is now on 60mgs Rinvoq and has remission for the first time in 3 years. (we have to pay for it off script here in Aust because of the increased dosage). Just wondering whether both boys might have similar genetics and whether Rinvoq might help the boy with ME/CFS? It has been a miracle drug for UC patients but still in experimental stages re dosage. Would be interesting to see what other conditions RINVOQ has helped.
Hi. What aspects of ME CFS does nifedipine helped with your son?
Hi Anish. I read an article by Susan Parker (2014) Nimodipine Use in ME/CFS patients about 5 years ago and my son started taking nimodipine / also known as nifedipine.
After starting the meds he noticed some initial swelling in his ankles and then significant improvement in his ME symptoms – sleep (he is still always tired but now can sleep through the night and when he wakes he feels like he has had some sleep); less fibromyalgia / body pain; less sensitivity to light (but if he is in the sun all day he will still get a migraine); he has basically gone from 50% functioning to 90% functioning providing he stays within his energy zones. He can no longer play state basketball and run along the beach but he can hold down a job and socialise a few nights a week. A few times, because of the improvement, he reduced the nifedipine but the symptoms returned within a week. So there is clearly some correlation for him. Good luck
Nimodipine and nifedipine are different drugs. Please clarify which one your son is taking
I have a sister that was on another JAK 1 Inhibitor ( Zeljanz) for RA. Dr Wes Ely at Vanderbilt is running a trial of Baricitinib another JAK 1 Inhibitor for
Long Covid (as Cort has reported).
For years I have felt that JAKs could be used for ME/CFS but we don’t carry the approved diagnoses for these drugs.
I am so happy Rinvoq gave you back your life and function Jen!!! Like the others have mentioned above, no one has run any cytokines labs or ever considered sending me to an immunologist despite my requests for a referral. I admire your persistence Jen and your self advocacy!!!
It seems ME/CFS is a huge battle but the biggest battle often is with the ignorance and lack of diagnostic skills in the healthcare system.
Jen, your sibling had spina bifida and you have brainstem compression. I had Chiari ( another neural tube defect) and the overcrowding caused my vertebral artery to chronically compress my brain stem. It interferes with BP , HR and Respiratory issues at the Nucleus of Solitary Tract. It seems the more complex the problems the more we are dismissed.
Anyway, I look forward to reading your case study!!
Where did you get your cytokine panel? What’s it called?
Can someone tell me what dose she took?
Jen, this is such a wonderful story. What a miracle! I hope this works for others, too. I also have EDS and MCAS and I would like to see your story repeated in other circumstances. Hopefully we can get more information soon.
Thank you, Cort, for finding all the recovery stories that you have presented to us. We’re all so different, it’s amazing that people run across something that works. More, please!
Thanks! A really interesting recovery story is coming up. 🙂
This is great news!
The big question that it arises is; “What is the specific mechanism of action of the drug that brings about beneficial effect?”
I therefore posed the following questions to Chat GPT:
You said:
Would the JAK1 inhibitor, Rinvoq, be an effective medication in order to reduce elevated circulating Fibronectin levels in the blood plasma of Myalgic Encephalitis patients?
If so, what is the beneficial mechanism of action?
ChatGPT said:
The question of whether Rinvoq (upadacitinib), a Janus kinase 1 (JAK1) inhibitor, could effectively reduce elevated circulating fibronectin levels in the blood plasma of Myalgic Encephalomyelitis (ME) patients is both intriguing and complex. While there is limited direct evidence specific to ME and fibronectin levels, the potential mechanisms through which Rinvoq might exert beneficial effects can be reasoned from its known pharmacology.
Fibronectin in ME and its Regulation
Fibronectin is an extracellular matrix protein involved in cell adhesion, wound healing, and immune response regulation. Elevated fibronectin levels are associated with chronic inflammation and fibrotic processes.
In ME, chronic inflammation, immune dysregulation, and potential fibrotic pathways may contribute to abnormal fibronectin dynamics, although research in this area remains exploratory.
Fibronectin production is driven by pro-inflammatory cytokines such as interleukin-6 (IL-6) and tumor necrosis factor-alpha (TNF-α), as well as downstream signaling through the JAK-STAT pathway.
Mechanism of Rinvoq (Upadacitinib)
Rinvoq selectively inhibits JAK1, a kinase that mediates signaling for multiple pro-inflammatory cytokines, including:
IL-6
Interferons (IFN-α/β/γ)
IL-2, IL-12, and IL-23, among others.
By inhibiting JAK1, Rinvoq reduces downstream activation of the STAT transcription factors, leading to:
Suppression of cytokine-driven inflammation.
Decreased production of pro-inflammatory and fibrotic mediators (e.g., IL-6, TNF-α).
Potential Impact on Fibronectin Levels
Reduction of Pro-Inflammatory Cytokines: JAK1 inhibition can decrease IL-6 and TNF-α levels, which are key drivers of fibronectin expression. By dampening these cytokines, Rinvoq could theoretically reduce fibronectin synthesis in the liver or other tissues.
Inhibition of Fibrotic Signaling: Chronic immune activation often leads to tissue remodeling and fibrosis. By interfering with JAK1-mediated pathways, Rinvoq might indirectly modulate fibronectin deposition or release into the bloodstream.
Dampening Systemic Inflammation: Elevated fibronectin levels in chronic inflammatory states may be a consequence of systemic immune activation. Rinvoq’s role in suppressing inflammation may indirectly normalize fibronectin levels.
Relevance to ME
Chronic immune activation: ME is thought to involve chronic low-grade inflammation and immune dysregulation, making therapies like JAK inhibitors conceptually appealing.
Cytokine-driven pathways: If elevated fibronectin levels in ME are a result of cytokine signaling (e.g., IL-6 or interferons), JAK1 inhibition could reduce both inflammation and fibronectin production.
Evidence gap: There is no direct clinical evidence or trials evaluating Rinvoq in ME or its specific impact on fibronectin levels. However, the mechanism suggests potential benefits if fibronectin elevation is linked to cytokine-driven inflammation.
Limitations
Non-specific targeting: Fibronectin levels may also be influenced by other non-cytokine pathways, such as mechanical stress, oxidative stress, or vascular abnormalities, which JAK1 inhibition might not address.
Lack of direct evidence: While Rinvoq is approved for autoimmune diseases like rheumatoid arthritis, its effects on ME-related pathways, including fibronectin dynamics, remain unproven.
Potential side effects:
JAK inhibitors carry risks of immunosuppression, thrombosis, and lipid abnormalities, which could be particularly problematic in ME patients with autonomic or cardiovascular issues.
Conclusion.
While Rinvoq’s mechanism of action suggests it might reduce elevated fibronectin levels in ME patients by suppressing cytokine-driven inflammation, direct evidence is lacking. Its effectiveness would depend on whether elevated fibronectin in ME is primarily mediated by inflammatory cytokines within the JAK-STAT signaling cascade. Further research, including clinical trials, would be needed to confirm this hypothesis and evaluate the safety and efficacy of Rinvoq in the context of ME.
Great question and great answer!
Cytokines have been studied in ME before but cytokines are usually normal in most ME patients I am afraid.
Er, nope. Lipkin did a v large study about a decade ago showing the opposite
And another interesting question is whether Rinvoq might close the Itaconate Shunt that was hypothesized by Dr. Rob Phair.
Susan,
We are following Jen’s case closely as well as the case of a less severe ME patient who has experienced an even longer remission after a short course of filgotinib.
Dear Robert,
You are probably aware of this, but
https://www.cell.com/cell-metabolism/fulltext/S1550-4131(22)00046-8
JAK1 was directly modified by itaconate derivatives at multiple residues, including cysteines 715, 816, 943, and 1130. Itaconate and OI also inhibited JAK1 kinase activity
Hi! Congratulations on healing from your ME. I achieved remission in may after SGB injections, HBOT and LSD, but I have been sick for ten years and I’m struggling with increasing activity without triggering trauma responses. I no longer have any pots or PEM or brain fog, but I’m still autistic and have adhd, and ptsd from the experience. I would love to get in touch with you. I have never been able to find someone who has recovered after a long time and who can relate to the ongoing emotional difficulties after such a long period of inactivity.
Jo,
I wonder what HBOTand SGB injections stands for?
It stands for stellate ganglion block and hyperbaric oxygen therapy
An amazing recovery story! Not the first time we’ve heard of Jak Stat inhibitors leading to remission.
In case you’re reading this, Jen, how severe was/is your CCI?
Which cytokines were part of the panel?
Thanks!
Very interesting read. What a remarkably difficult and challenging journey. I want to mention that Yale LISTEN Study participants, in a Zoom Cafe with Wes Ely at Vanderbilt as guest, learned that Wes, on an AI expedition to solve LongCovid, got an answer from AI that Olumiant (barcitinib), a Jak 1/2 inhibitor was a potential treatment. My understanding is that trials are underway. Wes, author of “Every Deep Drawn Breath”, is a remarkable and caring doctor and human being, and I bet he would be very interested in your story. He gave his then email to the group as: wes.ely@vumc.org
Jen, since you mentioned EDS and immune deficiency in your family, do you also have mast cell disease? I have been diagnosed with HSD/hEDS and clonal mast cell disease, along with Lyme, long COVID, autoimmune disease and ME. 20 years of my life has gone down the drain since I first had EBV/mono as a teen, with everything brushed off as just fibromyalgia and depression before getting correctly diagnosed post-COVID. I truly believe it comes down to mast cells, and that is the underlying reason why hypermobile patients seem more vulnerable to chronic illness including ME, because we are also more prone to mast cell disease. It would give me so much hope to learn that you also have mast cell disease, because then I could almost believe that Rinvoq might cure me, too.
Hi Jen, congratulations and thank you for highlighting your story. I didn’t see it mentioned so I assume you haven’t gotten one done but wanted to ask anyway if you had a 2 day CPET done? I’d be curious to know your Vo2max and how poorly your oxygen uptake was in mitochondria which can be shown via this test. Also wondering if you felt the “toxic” or “poisoned” body feeling all over as well frequently? Ty
I am recovered yet again from ME/CFS but I do get the internal shakes that this woman has. They started suddenly last year and it is either an ME/CFS symptom or something else. It is not parkinsons as I had a brain scan which was completely normal. Does anyone else get internal tremors/shakes?
Very many pwme get internal shakes. I read it a lot… especially after exertion.
Isn’t that Ron Davis theory too? That this disease is a problem of the immune system that should be corrected with JAK-STAT inhibitors?
I am also eager to know which pathogens had Jen since the theory of ME being caused by chronic infections is predominant as well and shared by many. Are they bacteria, fungus, viruses or all of them?
I just hope these finding are not overlooked by the medical community and clinical trials are scheduled soon.
Wow such an inspirational story! So happy You found something that is really helping you! A lot of your story reminds me Of my story. I am 45 and had ME/CFS, POTS, major GI issues as well as autoimmune health issues. I got really sick in college and for 24 years suffered so much and tried almost all the treatments you mentioned and more and went from doctor to doctor and was mostly bedridden. I finally found out I had large amounts of mold/enviornmetal illness way too many toxins in my system and also a colon issue that required surgery. I had tried so many things and everything either didn’t help, helped for a very short time or made Me
Much worse especially IVIG. Detoxing with sauna and lots and lots of Hyperberic and having a colon surgery and addressing my gut microbiome has made a HUGE difference! My autoimmune issues are unfortunately still present but after 24 years my pots is gone as is the profound exhaustion and heavy eye feeling of ME/CFS. I used to need a cane to walk and could barely function and now it’s still
Shocking to no longer deal with this. I wish I knew about this
Mold illness and enviornmetal
Toxins 24 years ago! Please look into this!!!!
Great news JenX! I’m so happy for you! Hopefully this will work for others as well and break the hold of this horrible disease on so many people in the future. I can’t wait to read your case study. I’m so sorry to hear about the genetic component within your family. That must be terrifying. Please continue your contributions to finding a cure by getting some in-depth genetic testing done. I’m sure one of the ME/CFS organizations would pay to get it done for you through a university or other research group but if not maybe Cord could set up a separate fund. Even though it’s unlikely there is one specific gene triggering this in all of us, there is so much we can learn from just one more piece of the puzzle. Have a wonderful holiday season! Blessings.
Heartfelt congratulations to Jen on her recovery. It sounds like a very particular pattern, and as you say, research is going to be needed to decide whether it has wider application.
One word of caution: I thought I had completely recovered from ME with little or no symptoms for many years, only to find that there still was a ceiling to how much exertion my body could stand. When I tried to swim more than 1 km a day, I had a terrible crash Followed by gradual deterioration and now, after eight years, I am housebound.
So I really would Counsel anyone, no matter how convincing their recovery looks, to proceed with caution!
Congratulations Jen X! I’m so glad you found remission! That’s amazing!
Thank you for sharing your story with such detail that so many of us can relate. I am part of the MEAction writing group called “Pillow Writers,” and I find your thorough descriptions of symptoms to be very detailed and remarkable. Your story would be highly appropriate and useful as an educational tool for medical personnel, and we are working on such a project. If you might be interested in collaborating (500 words), we would absolutely appreciate sharing your story. Please reach out if interested. 🙂
Hi, Jen. A hearty congrats on your tremendous recovery! Question: Approximately when do you think your case study will be finished and accessible and will you (or someone) be promoting it to platforms read by researchers and clinicians? Also, just confirming that you received off-label Rinvaq from a researcher not a clinician.
We saw the off-broadway production of Cher last week and I remembered that she nearly died of pneumonia associated with ME/CFS. I did some research and found that she had remission after having stem cell treatment in Germany. But, a few years later the symptoms came back. I have no idea how she is being treated today, but with her resources there are probably treatments we don’t have access to.
Dr. Paul Cheney also took a number of patients to Panama for stem cell transplants. They also had remissions for a year or two, but then symptoms came back.
In the case cited in this blog the author has had an eight month remission of symptoms. In my opinion, not enough to risk such a toxic drug.
What is the rationale for stem cell transplants? I think Dr Cheney made a lot of money out of his ME/CFS patients.
Hi Martin, A stem cell transplant replaces damaged or destroyed stem cells or bone marrow with healthy ones. The goal of a stem cell transplant is to restore blood-forming stem cells so they can grow into healthy blood cells.
We have a friend who is going to Colombia in a few months for a stem cell transplant for Long Covid. This will cost $18,000, but she has been so sick since she got Covid in 2020, she is desperate for any help.
My point was that as expensive as they are, stem cell transplants don’t seem to offer lasting recovery.
Yes, Dr. Cheney was expensive, but under his care I was able to function, run a national nonprofit organization, travel, bake, paint, play limited golf and live a reasonable life as long as I paced.
At one point, his cell signaling factors put me into a remission that allowed me to play 18 holes of golf one day and go to Disney the next day.
The treatment I am on today was recommended by Dr. Cheney shortly before he passed away.
But, unfortunately, my health cascaded after I got Covid twice in one year.
And finally, I know of no other ME/CFS doctor who has been so honored by his patients that they maintain a Facebook dedicated to him and his treatments.
Hi Betty
Thanks for your story. How is stem cells supposed to work on ME then according to Dr Cheney?As far as I know, my red blood cells are fine. And what is cell signalling factors? I am from the UK not US so I don’t know much about these treatments. I couldn’t afford 18k dollars anyway.
Hi Martin, I am no expert on stem cells, but this link has some of their uses:
https://www.google.com/search?q=how+do+stem+cells+function+in+healing&rlz=1C1RXQR_enUS1120US1120&oq=how+do+stem+cells+function+in+healing&gs_lcrp=EgZjaHJvbWUyCQgAEEUYORiABDINCAEQABiGAxiABBiKBTINCAIQABiGAxiABBiKBTINCAMQABiGAxiABBiKBTINCAQQABiGAxiABBiKBTIKCAUQABiiBBiJBTIKCAYQABiABBiiBNIBCTE2MDk5ajBqN6gCALACAA&sourceid=chrome&ie=UTF-8
Cell signaling factors were small bottles of gels, one for heart, one for brain and the other a type of stem cells. The stem cell gel is very powerful and I only use it when I am feeling really bad as it will knock me out the next day, but after that I feel better.
These treatments were pioneered in Germany and Dr. Cheney adopted them and actually made the products. His family holds a patent for them and you can purchase 3 bottles for around $700 from the family. They last about three months, so the cost isn’t too prohibitive.
I honestly don’t understand how these work and they don’t help everyone, but I was one of the lucky ones. They are no cure, however.
This article definitely speaks to me: the high interleukins, low lymphocytes, sun allergies, sudden onset with high fever, EDS, my only sibling and I are the 4th generation with that illness (at least).
I actually re-checked a blood test of 2018. It says,
“IL-8 ELISA IL-8 serum level: 451 (normal range: 0.00 – 15.00 pg/ml)
IL-8S IL-8 serum: 248 (normal range: 0.00 – 15.00 pg/mL)”
something is clearly wrong. I also had weak-positive toxoplasmosis for years until we stopped testing it…
I’m delighted for this patient. It must feel surreal to no longer feel ill. It’s been 38 years, and I no longer remember how it is to feel well, no pain, no bone-crushing fatigue, the freedom to just take a shower without thinking about the after-effects…
Yes, to dovetail Angel’s comment above, isn’t a lot of Ron Davis’ work focused on JAK Stat inhibitors?
Which specific cytokine multiplex 18-panel test was used?