Our Stories

I had unusual health issues my whole life, but always had good general health until covid in 2020. I had unusual symptoms during the acute infection (just tachycardia and diarrhea) so couldn't get a test at the ER. I knew I was in big trouble a few months after infection. I had arthritis so bad in my hands and feet I was in tears every morning. My heart rate began shooting up to 200 in the shower and dropping into the 30s during the day.

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After getting covid, I lost 75 lbs and had terrible proximal muscle wasting and diarrhea. I had to quit my job due to brain fog and fighting constant nausea, migraines, and orthostatic issues so severe I had trouble sitting in a chair. My health and coordination gradually worsened to the point where I was considering using a wheelchair in 2022. I've had one severe relapse since getting covid that occurred after a surgery.... I was bedridden for days and unable to eat. I've managed to prevent any more severe crashes, but live in fear of them.

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I've gone from going 2-3K steps a day to 5-6K steps a day. Sleep, focus, and stamina are all much improved in Phase 1. I've been really impressed by the willingness of the group to share information and tips, and information from other participants has really helped me out as well.

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I started being able to sleep--real, actual, restful sleep! I'm not sure I can adequately describe how miserable nights became after getting covid, or how huge it is to be able to sleep again. Many longhaulers complain of a constant "fight or flight" feeling and adrenaline dumps at night when cortisol drops. After just a few weeks on the protocol, I started regularly getting 2-3 more hours of sleep per night--and feeling refreshed on waking. That constant feeling of being on a knife edge started to ease.  

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I'd love to be able to take care of my pets, house and yard the same way I used to. It sounds so basic...but it's everything.

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You must do your part as a patient to address diet, sleep, time outside, and mindfulness. Enlist help from relatives and friends. Be brutally honest with doctors, your family, and yourself about your available capacity.

Keep copies of all your labs, imaging, and doctor's notes in a portable file box, and bring those records with to your appointments. If a doctor won't believe you about things like your low blood pressure readings, take pictures. Buy your own labs if necessary, and consider privately paying pay for expert help. You can learn a lot from other patients and from Google, but you'll need a medical person on your side willing to work with you on medications and quality of life. Chronic patients need that one provider--and if you don't have them yet, you need to keep looking.

Don't sit around waiting for doctor's offices to call you back--call them. Be pushy. If something is abnormal about your labs or imaging, ask about it. If your insurance company is playing games with you, call the state insurance commission and file a complaint.

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The 13th time a horse fell on me was, in fact, unlucky. Unlike the prior 12 times, it was purely accidental: she slipped, we both went down. Unlike the prior 12 times, I was knocked out. While I didn't recognize what was going on at the time, I noted exercise intolerance, metabolic change, and memory issues within the next year.

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It is likely that many things had set the stage. Likely mosquito borne  illness as a teen, a leptospirosis infection, so many tick bites, & so many prior concussions. My 2008 concussion, however, represents a distinct change. I had somewhat coincidentally left my live in barn job to return to school in 2009. While I kept riding & teaching during, this was still a massive decrease in physical strain. Despite the stress & long hours, the change likely delayed the progression of symptoms. By 2018, however, those symptoms had become unmanageable. I was training horses, teaching riding lessons & dog training part time, & pursuing my PhD in history of science. Due to progressing symptoms that baffled my doctors, I slowly folded my business & have since had to pause my studies.

I was a phase 1.5 participant, due to a severe sinus infection. When I posted about my prescription, Tess very generously sent me a box of supplies. Between what she sent & what I had or could get, I was able to follow about 75% of the pilot protocol. I did experience remission events– my experience in the timing of symptom cycling led to the ongoing discussion of glutamate uptake & metabolism being central to antibiotic-mediated remission events.It has been almost a year since that treatment, which did also lead to sustained gains in function. This has been my most stable year in over a decade. Some is likely due to my phase 1.5 participation, & some due to prep for the protocol; most, however, has been due to the community. The shared knowledge and shared support has been immense.

I was initially interested in RemissionBiome because I saw many similarities to a protocol I had put together for myself the previous fall, which had led to a full if temporary remission. Because of the similarities and exploring the potential mechanisms, I expected some success. I did not expect the extremes of the experience. The sunsets that week are still clear in my mind.

May 8, 2023, 8:53 am: the moment I was certain how I felt was not a coincidence, and not an average good day. https://twitter.com/KatBoniface/status/1655601740010618880

Finishing my dissertation! Every once in a while I get to talk to someone about my research, or painstakingly write two or three sentences, and remember how much I LOVED to write.

I wouldn't trust it enough to reopen my business, but would want to go ride with friends. Maybe take our border collie mix to the new indoor agility park that opened near by, and definitely spend more time in our yard, gardening or playing with the dogs. I'd go back to trying to get the dogs and cats to work together in training sessions (fun for all of us, but requires exponentially more energy than one on one). I have a museum exhibit to develop on early Hollywood, at the intersection of SciTech and animal history– I can't just hand it off either, as it also uses family records. So it's just in limbo, waiting, despite having a venue and collaborators ready and waiting for a real proposal.

Right now the vast majority of my energy goes to my job (teaching college writing). I've had to make a lot of adaptations to my teaching style– sitting more, needing to carefully plan when I can express excitement for student ideas and progress, changes to how I handle daily assignments. It would be lovely to be able to be able to bring more excitement in again, and almost unimaginable to be able to join back in with department reading groups and discussions; I have some fabulous colleagues, and love being able to talk through unique situations, new techniques, and just refining our ability to help students develop.

I might even travel again, at least locally. I could trying skiing, which my wife loves. We could go camping. Cook for friends (I can manage to cook for myself a couple times a week, for which I'm grateful: this is much better than last year). Volunteer again. Visit family more.

Your symptoms are real and objectively measurable.

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I caught covid before lockdown in the UK in March 2020. My main symptom was a horrendous cough and chest pain. Few weeks later I had numerous symptoms, my worst being lungs and chest pain. 2 weeks after my infection I went for a run and nearly collapsed due to pain. It took 2 years to be referred to a longcovid clinic. I’ve only ever had very standard bloods and testing. Whilst ill with longcovid I rarely discussed it. I’ve had my diagnosis/symptoms questioned by friends because I was still working and walking. There’s stigma around covid causing health issues, they’d rather only blame the vaccine. I got my second covid vaccine in May 2021 and started experiencing severe joint pain. I had my booster in December 2021. From April 2022 I have progressed to severe ME/CFS and am bedbound.

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My health has only gotten worse since my vaccinations. I have deteriorated since then and never improved.

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Since starting RemissionBiome I have learned that there is a lot more to medicine than anyone realises. I have only had standard blood testing through the NHS but I now know there is a lot that can be done outside of this to bio-hack your way potentially back to health. It’s exciting. Due to my severity I have been on the protocol for numerous months now and appreciate the time it’s going to take to make sure I have everything in place before starting acute phase. I appreciate all the help I have had so far.

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N/A as I am still in the first phase.

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If I was fully healed I think I would just  enjoy not feeling like my body is shutting down and dying. I can’t imagine what it feels like to be in full health as it’s been so long. I’d also see my nanna who I haven’t seen for 2 years.

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Be patient. It’s a slow process to get everything in place.

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ME/CFS derailed my life’s journey in 1992 at age 25 from working as a scientist to the turbulent track of disability applications, doctor appointments, and medical tests, all while having so little energy that going to the bathroom or making a simple meal was more exhausting than marathons look to be. I was sick on and off before 1992. I took longer to recover from infections than other people until one day I didn’t recover at all.

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I had periods of higher functioning and times of actually feeling not sick, but I have not experienced the kind of improvement that would make working possible again even for a short while. I talk about the two weeks this medicine gave me that I felt great, or the 3 weeks that one did, but none were sustainable. Effort, stress, metabolic deficiencies, and/or too much upright time could crash me. New infections did crash me.

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The knowledge of what is in the protocol and what it is generally for helped me understand my previous symptoms better so I could treat them better. I don't tolerate all of the items and I am only in stage 1, and yet I have had a steadying effect and small baseline increase from the items I can take.

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I had a grateful, hopeful, loud science related “Eureka” moment before I applied to be in the project when some protocol items were just being discussed on X (formerly Twitter) and I was following along on my own. Successes with just a couple of the items was enough to see I was on a new right track.

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First, it would be the most personal stuff: better quality and fun family time, traveling with spontaneity, dancing with my partner, having a hot fudge sundae with a brownie chaser on my birthday; then it would be expanding my role in helping others find what helps them.

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Meet as many awesome people similarly afflicted who can tell you what mistakes they made so you don't spend energy or money making the same ones. Make new mistakes! This process is still trial and error. Embrace all the clues, especially about the things that make you sicker. Finding strength to survive in the numbers. You'll benefit from having friends who understand.

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I had just spent 9 months recovering from a neck injury. I went on a trip to reconnect with myself and look toward the journey ahead, but instead I came down with mononucleosis. I've been dealing with this ever since.

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I've experienced several long periods of remission or near remission, followed by coming back to illness.

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I've had several periods of symptom remission for days or weeks at a time. I've loved the structure and the community aspect, and grown much more confident in how I approach my health since starting. I used to find the world of treatments overwhelming, now I'm eager to try them.

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I could tell about a month in something was going in the right direction.

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Getting back to living life fully. I want to dance and create and build a family and help my community. I want to spread joy and use the strength of character that my experience has given me to make a difference in the world.

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Mindset is everything. You have to come to terms that you are now on a path that is far different from your expectations, and the greatest suffering you will face is if you cling tightly to those expectations. While life will feel much smaller when you're ill, you may find that once you shed expectations, it will not be as small as you fear, and it may offer interesting and unexpected life paths to go down in terms of personal development. Illness will break you down and expose the core parts of you to yourself. Embrace who you become in this process, treat it like a rebirth and an opportunity to rediscover the next version of you.

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My ME falls under 'gradual onset'. In High School and perhaps MS I already had unrefreshing sleep, digestive chaos, and hints of dysautonomia as well as odd reactions to exercise. Earlier back, signs of hypermobility were present. In college, cognitive symptoms ramped up (added to IBS, failed attempts at exercising, etc) but these were all attributed by specialists to Depression, and I believed them. I could still dance then, but not in a regular, consecutive way.

After college and my sister’s death I turned to the most stress-free lifestyle possible (living in Puerto Vallarta, trying alternative treatments). Most doctors said my symptoms were due to grief, but I knew they preceded the loss and weren't responding to therapy, diet, etc. More than not improving, they were getting worse.

In ‘15 I got a diagnosis of CFS in California. By then I couldn't ride a bike or swim without obvious payback, but I worked in a museum. I got a referral to see an ME specialist, but was on the waiting list when my visa ran out.

A teaching job in Mexico City was too intense so I switched to freelance work. In early ‘17 I could still walk to a café and sit up at my computer for hours, but I spaced out visits to the market, laundry, etc.

Late ‘17/early ‘18 POTS surfaced. My life has become smaller since then. At first I was able to work a bit, do a bit of walking. Now walking more than a few minutes gives me PEM and I've had to stop working. I spend much of my time lying down. I can read and sometimes write but not for long stretches of time. I can leave my house once or twice a week.

At first I approached the protocol as a sprint. Then I realized, as I learned more about complex chronic illness through this community, that personalization and safety are key, and that I needed to consider this a longer-term project both for my wellbeing and for the quality of the protocol research. I'm still very excited about the antibiotic moment, a possible rise in baseline, and gathering data that will serve as a guide not only for my personal path but for ME research, but these days I think of RB as an amazing healing quest. Through the expertise and generosity of this community I've learned about data measuring, biometrics, genetics, MCAS, and many other relevant topics that translate into personal and broader actions. I feel very grateful to be part of this group of renegades.

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I'm still in stage 1, but I definitely notice a cognitive difference with certain protocol supplements and can identify negative reactions (to food, to supplements, etc) in my body much better.

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Dancing is always the first thing to come to mind. Slow-dancing with my partner, 80s pop dancing with my mom, salsa dancing with my friends, joy dancing among acquaintances and strangers. I'd go back to tango and flamenco. I'd try modern dance again. And writing for hours in coffeeshops. And walking and drawing around many cities and in many forests. And applying to work in a museum! And traveling to meet my friends' kids. And taking care of all my niblings. If I got better, I'd also return to the dream of raising a child.  

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I would say to take it at their own pace! There's an enormous wealth of knowledge in the group and the many paths to explore (considering mold, learning about glutamate) can feel overwhelming, but ultimately we can only do what the day and body allows, and this is a community of people who understand that. I go back to the basics of the protocol if I feel too ramified (click on Bearable, order the one pending supplement) and know that I can learn more about plasmalogens and quercetin later on. Every time I've leaned in for support (informational, logistical, emotional) in this group, I've found great understanding and care.  

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Since childhood, I seemed to catch every flu or cold that went around. I also had severe constipation that lead to hospitalization in grades 4 and 6 respectively.

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My health fluctuates. Since grade 4, I never recovered.Some years I functioned normally with mild symptoms while others I was quite sick. After receiving general anesthetic, I became mainly bedbound for months, slowly improving through rest. Upon starting University in 2021, the exertion created a push-crash cycle. Each crash led to a lower baseline until I no longer tolerated food and was hospitalized for tube feeding for 5 weeks. I was discharged with suspected CFS and told to gradually increase physical activity. That summer I was mainly housebound, received a formal diagnosis, and started pacing strictly. In fall, I caught COVID and became 90% bedbound. My symptoms trended in a downward progression and I got a peg-j tube, though I am still recovering from the excursion.

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Remission Biome has been a wonderful source of information and support. The testing identifies issues that have clear steps to address and the leadership team provides personalized support and expert guidance.

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N/A

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I’d love to return to university, play the bassoon again, and spend time in community. To visit with friends in person and not have to weigh or struggle so much with the minute  things would be lovely

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Please prioritize pacing. Supportive community is also invaluable as it provides a network for you to lean on for advice or provide assistance when you need while also providing an opportunity for you to support others as your energy allows. Taking care of yourself is important beyond the medical or essentials. Whether that’s energy for something that brings you joy or comfort items, it may feel frivolous or wasteful but its helpful for coping.

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In 1996, while living and working in Indonesia, I came down with Typhoid Fever. After treating it 3 times over 4 months, many symptoms just never seemed to go away. Especially disabling exhaustion that would come out of nowhere. I remember trying to research this on the early internet and finally gave up. My doctor didn't know how to help.

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I never made the connection to the time after Typhoid and decades of poor health that seemed to cycle between good times and bad times. I reported classic symptoms of ME/CFS to my doctors but no one ever made the connection. Instead I was told to just exercise, reduce stress, and take some pills to help with disabling migraines and poor sleep. I beat myself up assuming it was all my fault since no matter what I did I didn't improve. After finally going outside of my insurance based medicine I was diagnosed with ME/CFS, 23 years later. When I got COVID in 2020 it triggered entirely new and worsened symptoms and I've been on a rollercoaster of different baselines ever since. I did find my way to the ME/CFS & Long COVID patient community and that has been my lifeline to improving my care.

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I've learned so much about my own health and conditions! Made new friends! Feel so supported and feel like I have access to resources I wish I had had decades ago. I have had mostly very good responses to all the protocol items I've tried so far and have made huge improvements in my gut health and haven't even finished the protocol yet.

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I knew I was right where I need to be when I was trying to desperately decide if I was going to switch insurance during the open enrollment period so that I could maybe improve my access to clinicians with more experience, I realized that it wasn't urgent, especially given how challenging finding trained clinicians is. That the support I have had from our community is helping me reach for a higher baseline with wisdom and expertise that is a foundational part of my treatment journey. I'll find the right doctors in due time, and I'll be bringing the best resources with me.

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I want to know what it's like to not feel brain fog all the time and have my super fast brain functioning at the level I had before COVID. I would love to spend more time on having a fulfilling life, instead of saving my own life and managing my own care which are so time and resource consuming.

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This is a step-by-step journey. You're in the right place. The patient community holds the wisdom and love. It's important to know that some patients with ME/CFS are responders, some are non-responders, some are reactive. We don't know exactly why, but it means not all things work the same for all people and we have lots of work to do to figure this out so that everyone has a chance at some form of remission or partial recovery. Those of us that get higher baselines sooner can help those that need more or different support.

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I have had health issues my adult life possibly triggered by chicken pox in childhood and EBV in early adulthood. I worked part time in college. Upon graduation, I began my professional career with a premier accounting firm while also receiving my accounting license and certification. Next, I transitioned to a less demanding accounting position, but my health problems escalated. No diagnosis for being constantly tired, unrefreshed sleep, occasional unexplained hive breakouts, cold/heat intolerance, and persistence of the common cold. Each cold turned into a sinus infection. I continued to travel, grow and do the things I loved. Catching a cold became a regular occurrence; it then led to bronchitis or pneumonia. Regular bouts of rest and remaining bed bound became more frequent.

My ME/CFS health evolved throughout the years from mild to moderate to severe to moderate to severe, and now to moderate. I had phases where I felt better, but they were inconsistent. And although I love to plan activities for myself and others, that aspect of my personality has diminished. Simply enjoying a dinner out became insurmountable. Heading out the door, my energy level would drop dramatically and force me to cancel. An amusing coping aid I developed to measure my daily severity was based on whether or not I was watching reality tv series. The worst I felt, the more time I spent watching them. I’ve had multiple relapses through the years, and recently added Long Covid to my health complications. I had a minor relapse recently, but fortunately came out of it while on the protocol.

Since starting the protocol I have been met with support, scientific knowledge and kindness. The Renegade Research and Remission Biome groups share experiences and science that is relevant and timely. There is so much overlap with ME/CFS and Long Covid. The information is both longstanding, tried and true, as well as cutting edge. I’ve found that each type has its place in my journey. I have experienced health improvements in energy, endurance, and elimination of or reduced symptoms.

I realized the protocol was working for me when I felt a bit tired after mild exertion from daily life activities, rested and felt able to continue with those daily life activities without causing PEM.

If I were fully healed, I’d be more excited to have adventures with family and friends outside of my house, travel with my family, spend more time in nature, and give back to those who are still suffering.

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Never give up. Try to be patient and kind with yourself.This journey is not a straight line. Look for the good in each small, seemingly insignificant step on the journey. It can be hard to stay positive, and that’s okay. Discoveries and breakthroughs are being made every day.This is true more now than in the last 25+ years of my illness. I have more hope than at an any other point in my life.

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