I think that the microbiome is going to be where the action is [in ME/CFS]. Dr. Ian Lipkin – Leader of the Gut Microbiome Project for ME/CFS.
The third part of Health Rising’s recent gut series takes the gut issues in ME/CFS from the complex statistical analyses we’ve seen in the studies to the very concrete. Research is, of course, invaluable, but it’s slow and takes years to get to the treatment stage and when it does, it usually does so in a very conservative way – trialing one drug or treatment approach at a time.
Enter two intrepid ME/CFS entrepreneurs: under a doctor’s supervision, Dr. Tess Falor and Dr. Tamara Romanuk will undergo a complete multi-stage gut reset in an attempt to regain their health. Bolstered by recent gut findings that suggest they’re on the right track, they’ve even managed to get funding to support their efforts and will communicate their results to the patient population, doctors and scientists in real time. This is patient-science at its very best. (Thanks to Natalia for her blog illuminating their efforts.)
HR’s Recent Gut Series
Dr. Tess Falor
Before she became ill, Tess helped design NASA missions.
Dr. Tess Falor was born to be an astronaut. The Michigan native had just turned 21 when she moved to California to start an internship at NASA’s Jet Propulsion Laboratory. “I knew this was what I was meant to do with my life. I was valedictorian of my high school and had a full scholarship to study Aerospace Engineering at the University of Michigan.” For Tess, on the cusp of her career, the NASA internship was a culmination of years of hard work and the next logical step towards a career in space.
But shortly after moving to Pasadena, she started having allergic skin reactions and experiencing bouts of exhaustion and fatigue. She explained:
“At the time, I was diagnosed with Valley Fever, a fungal infection you can get from breathing in spores from the soil. Whatever it was, it hit me like a tonne of bricks.” Over the next four years, her health went on a downward spiral, reaching a low point when she became mostly bedbound. It was a living hell. “I didn’t know anything about ME/CFS and spent all my energy going to different doctors, none of whom could help.”
In early 2009, she took a prevpac of two antibiotics (Amoxicillin and Clarithromycin) and a proton pump inhibitor (Lansoprazole) to treat H. pylori. Two days later, something incredible happened. She reported:
“I woke up and felt like I wasn’t in my body. It was disorienting, because my chronic pain had vanished. I thought I’d died because my body felt so light, like I was floating. My brain started working again; colors were brighter, food smelt better and I had this profound sense of gratitude for being alive.”
What Tess was experiencing turned out to be a sudden and complete remission of her severe ME/CFS. For two days, all symptoms disappeared and when the remission faded, her baseline had permanently improved. From there, she was able to bio-hack her way back to stable health, where she remained for over a decade. Over time, she earned her doctorate in Earth and Planetary Science from UC Berkeley, worked as a postdoc studying Space Physics, and helped design NASA missions as an aerospace systems engineer.
Years later, when her health deteriorated a second time, Tess joined Twitter to connect with the patient community. It was there she crossed paths with Tamara who was tweeting about her own brief remission event. Fascinated to see another person echoing her experience, Tess reached out.
Dr. Tamara Romanuk
A bout of dengue fever caught while doing fieldwork in Jamaica precipitated Tamara’s descent into severe ME/CFS.
In 2016, Dr. Tamara Romanuk had just been granted tenure at Dalhousie University in Nova Scotia when she became too sick to continue working as a Professor in their Biology Department.
“Like many of us, stopping work was one of the hardest decisions of my life and a direct reflection of how severe my cognitive issues had become. I was supervising Ph.D. students at the time, and leaving them was devastating.”
Tamara’s descent into severe ME/CFS started with a two-year bout of Dengue Fever while doing fieldwork in Jamaica. She recovered to a mild state, but additional viral hits to her immune system over the next decade eventually left her bedridden.
As they compared stories over Twitter, Tamara explained she’d taken antibiotics to treat a mouth abscess and experienced a fleeting remission as a result.
“For me, it lasted only four hours, but it was like a switch had been flipped. I went from being bedbound in a darkened room, to running around outside making angel shapes in the grass. Like Tess, colors looked brighter and I felt this overwhelming sense of gratitude towards the world. I could viscerally feel it come on and then fade away.”
As with Tess, this brief remission event shifted Tamara’s baseline from severe to moderate. She was stable and continuing to improve until recently, when the Covid vaccine sent her backwards again.
The Remission Biome Project
Bolstered by finding one another, Tess and Tamara created the Remission Biome research project to explore how modifying the microbiome could shift patient baselines in ME/CFS and Long Covid. This month, they plan to recreate their remission events while monitoring their biochemistry to track changes.
As with everything they’ve done so far, they’ll tweet the results of the experiment in real time, using social media to deliver information to the chronic illness community. By publishing their results in an academic journal, they’ll be joining a cohort of patient scientists who, tired of the medical establishment’s lack of action on post-infectious diseases, are taking matters into their own hands.
The Experiment
The goal – a clean and healthy gut – and a restoration of health.
Their experiment starts with four weeks of microbiome prep where Tess and Tamara will take prebiotics, probiotics, and a butyrate supplement. After this, they commence two months of antibiotics, (all antibiotics have been carefully selected for their anti-inflammatory properties.) They start with a three-day course of Amoxiclav and a one-month course of Doxycycline taken concurrently, followed by an additional month of Minocycline. Their goal is to shock their system into replicating the metabolic event that helped them earlier.
While on antibiotics, they’ll supplement exogenous ketones (to mimic the state of ketosis they were both in the last time they experienced a remission), as well as anti-neuroinflammatory molecules like b-caryophyllene and plasmalogens. After their course of Amoxiclav is complete, their focus shifts to repopulating their biomes with a range of probiotics, including an Akkermansia strain and Nella, a new product derived from the microbiome of elite athletes.
During their experiment, the team will track and record changes to their biochemistry using everything from Biomesight kits to Organic Acids tests and ProdromeScan blood testing, which measures hundreds of biomarkers related to neurodegeneration. To ensure their safety, an MD will closely monitor their progress. “Our protocol has been informed by our own research combined with the advice of experts,” says Tamara. “The last thing we want is to further damage ourselves by taking antibiotics, so we consulted gut experts Ken Lassesen, Simon Spichak, and David Esteban on how to protect and repopulate our microbiomes during the experiment.”
The team received input from over twenty other ME/CFS experts, and late last year, Tess had the opportunity to meet Robert Phair and discuss his IDO metabolic trap hypothesis. “I had all my notes spread out on the table and he told me how cool it is to see patients doing work like this. That’s something I love about this project. The ME/CFS community, even world-class researchers, supported us from day one. It’s exciting to be doing this together as a team.”
Support
Tamara and Tess struck out on their own and, under the care of doctors, and in collaboration with gut experts, are conducting an in-depth gut restoration mini-trial on themselves. Not only will we get real-time reports on their symptoms, but sophisticated tests will also reveal how this approach affects the physiology of their gut and other systems. They are true pioneers.
Investors believe Remission Biome is worth backing, too. In January, the scientific investment fund Balvi announced a $24,000 grant to the Remission Biome team. This game-changing money has enabled the team to take their research to the next level. The patient-scientists have a number of hypotheses as to why antibiotics produced their original remission events, but their main goal with this first experiment is to attempt to reproduce the shift. If they can successfully replicate it, they’ll begin working to better understand the mechanism of action and unpick how these remission events shift the body’s baseline to better health.
While patient-led research is sure to attract criticism from the conservative medical community, forty years of non-existent funding and an almost complete lack of interest in ME/CFS has left patients at a boiling point. With their strong scientific backgrounds – they have over fifty peer-reviewed papers published between them – Tamara and Tess are well-equipped to run a robust mini-trial. One that could tease out potential areas of interest for full-time researchers to study more deeply. Ideally, they’d love to design a simple microbiome protocol that patients with ME/CFS and other post-infectious diseases could use, with the support of their healthcare providers, to improve their baselines.
“The ME/CFS community are the original disruptors and innovators because it’s always been up to us to find ways to improve our quality of life. Remission Biome follows in the footsteps of giants, like the many people on Phoenix Rising, who learn as much as they can about this disease, share information generously and trust their intuition when it tells them to pay attention to their body’s behavior. The patient community has supported us from day one and we’re very excited to give back by contributing to the knowledge base on ME/CFS.” Tess and Tamara
Follow Tess and Tamara on Twitter and visit their website for more.
Fascinating! wish them best of luck!
I am so thrilled that we have scientists like this on board. Dr. David Systrom is onto something big that relates to the micro-biom. He found that ALL of the ME/CFS patients that he examined had low right atrial heart pressures. Thirty years ago they did not think that the parasympathetic nervous system (Vagus nerve is part of the parasympathetic nervous system.) had any role in regulating blood flow. Systrome placed his ME/CFS patients at The Brigham and Womens’ Clinic on Pyridostigmine for one year hoping to stimulate their parasympathetic nervous systems. He found that they ALL had better systemic oxygen extraction. Thus, their fatigue, post-exercise crashes, Fibro-fog all improved. More blood pooling in the big veins was getting to the right atrium. He guesses that whatever is causing the small fiber neuropathy, is also damaging the Vagus nerve (gut disbiosis ?), and the rest of the parasympathetic nervous system in ME/CFS patients. We’re tired and wired, because our parasympathetic nervous system is not properly regulating our sympathetic nervous system. The gut microflora maybe contributing to a “metabolic trap”. He is pushing forward with new Pyridostigmine trials.
Relating back to the previous blogs.
I wish the NIH had funded Dr. Younger’s LDN trial. He wanted to removed the inactive enantiomer (mirror image) from Low Dose Naltrexone, and treat patients’ neuro-inflammation with the active 50%. It is a fantastic idea!
Dr. Alan Pocinki (Maryland), Dr. Susan Levine (NYC), and Dr. Jacob Teitelbaum (Hawaii) all use Vit B12 in their Chronic Fatigue treatment protocols. Dr. Pocinki feels that it is critical in fatigue treatment.
I think this is the right way because the brain also regulates the bloodflow and oxygen in the gut. That is the cause -in my opniom of dysbiosis. It’s a 2 way street 🙂 In the gut bacteria produces serotonine, GABA and CCK very important for our well-being. So, there we have our loop!
Thanks! We haven’t talked to Dr. Systrom yet. Sounds like we should do that.
We’re including vagus stimulation as part of our protocol.
@Gijs,
It could all start with “leaky gut”. Toxins entering the blood through a leaky gut damage the blood brain barrier. The Hypothalamus – Pituitary – Adrenal axis is then damaged. Lucinda Bateman often says, “All of the symptoms of ME/CFS can be explained by looking at the Pituitary and Adrenals.” This first occurred to her when she began to wonder why so many of her female patients with ME/CFS often went into remission when pregnant. Top that off with most ME/CFS males having low testosterone levels, and you have a theory. The leaky guy is not discovered until symptoms are much worse. Circling back to Dr. Systrom’s data, the inadequate blood flow to the right atrium, could be due to inadequate amounts of Vasopressin (Anti-diuretic Hormone) coming from the Hypothalamus.
Some substances I’ve researched with potential to calm microglial cells overactivity, inflammation, glutamate exitotoxicity..
Tianeptine, low dose lithium-orotate?, gabapentenoids, agmatine sulfate, LDN, LDA. Cannabinoids.
Ive come across others but these stick out.
..Also methylene blue via suppression of harmful NO compounds.
Can you tell me more about methylene blue. My doctor wants to try it.
I guess the approach with fasting and plant-based diet is related as it does also affect the guy biome, and while I’ve experienced some improvement it’s not been anything rapid like these examples. Really hope they find something reusable for us.
How do I go about getting my doctor to do this? Or is there a specific doctor I can go to .. thank you,
Fantastic project that in many ways promotes the bioterrain theory of disease. The ancient Chinese medical model, which is still valid, states that all health begins and ends with gut (entire tract, from sinuses/teeth to the end) health. Western science is catching on quickly.
Sukie Baxter and some other sources (books, studies) show some simple trauma-freeze releasing exercises on her YT videos; these may assist those who would like some input on the somatic experiencing side of allegedly all physically created illness. “The body keeps the score” say the somatic psychologists of current and even epigenetically re-experienced ancestral trauma: There are intricately interwoven connections among what the body perceives as threats, safety, inner and outer environments. Mood boosts from these exercises can only improve overall immune responses over time, barring hidden chronic environmental exposures from water, food, air, mold mycotoxins/Sick Building Syndrome/CIRS.
This is so exciting! Best of luck! Do we know if they tested positive for SIBO?
I went into brief remission twice during antibiotic therapy. The first time was augmentin for a sinus infection. I was in 100% remission, but it only lasted a few days. A huge tease!
The 2nd time was while on Xifaxan for SIBO. I felt close to remission while on it. I’m no longer in remission, but it did improve several symptoms for me (it’s been 6 months).
Hi Rachel,
Tess here. We’re actually testing for SIBO next Monday!
I’m excited to hear another antibiotics remission story. We’ve found many people who had this happen and are collecting stories. Augmentin (Amoxiclav) seems to be the most common in the stories we’ve collected.
If you wouldn’t mind sharing more information, can you please email me? RemissionBiome@gmail.com
Question – how about the downside of antibiotics? I was on them for acne, I think their use was a key reason why I suffered from IBS for several years.
I highly recommend to read the book Super Gut from dr. Davis. His approach is to repopulate the gut with some well researched keystone bacterial strains. In order to be the most effective, he make yogurts from these probiotics and provide the recepies in the book. It’s not just effective agsinst SIBO, but as you might expect against various diseases caused by SIBO and dysbiosis.
Check out Esther’s amazing return to health following her gut reset effort
“I’s impossible to describe the awe I (and my husband) feel as I am able to do things I haven’t been able to do for so many years.”
https://www.healthrising.org/blog/2014/06/06/gut-brain-esthers-chronic-fatigue-syndrome-xifaxin-story/
Thanks for posting my story here, Cort. I believe I may be the first patient to raise the microbiome issue, use Xifaxan and then go into remission. In any case, my Gilroy CA gastroenterologist, Dr. Kevin Stuart, initiated the use of Xifaxan (I had had a stomach flu in addition to ongoing ME/CFS and Dr. Kogelnick followed me after hearing about my remission so he must have records as well. I’d love to participate in this trial now if that is in anyway possible? Anyone know if I can join the current study? As a senior patient, soon to be 76 and with ME/CFS for 37 years starting in 1986, it would be wonderful to see if treating the microbiome could help improve quality of life for those of us who are facing death with no hope of any improvement beforehand. We would all love a chance at a little life before making our departures. I am still under treatment for gastro-intestinal issues even now, currently using Xifaxan and Colestipol most recently. What a pleasure it would be to have the opportunity to make a contribution!
Wow!
We’re connecting with Esther via email. 🙂
Cort, we know that ME/CFS patients are low in butyrate producing bacteria. How do they intend to get butyrate supplements through the stomach acid. Akkermansia populations are also low in ME/CFS patients. Akkermansia is critical in preventing “leaky gut”. It is found in cranberries and pomegranate. But, ME/CFS patients have been unable to raise their Akkermansia levels by eating either fruit for lengthy periods. Years!
Fasting increases Akkermansia levels. Akkermansia by Pendulum supplement is also out there which is said to have an acid-resistant enteric coating.
Hi Rich,
As I remember from the butyrate blog some people think butyrate can get through the stomach acid ok. If you can handle fermented they would be a good option, though, and foods or compounds with short chain fatty acids could help as well, if I remember correctly.
Cort, I spent all evening studying your butyrate piece. (Geez, you spent a hunk of time on that!) Yes, “micro-encapsulated” butyrate appears to get beyond the ultra-low pH of the human stomach. ME/CFS patients are low in all of the known bacterial strains that break down fiber to butyrate. Thus, the interest in fecal transplants. Yes, these two brave women should add “micro encapsulated butyrate” to their protocol. Fantastic summation of the research Cort. Thank you!
Rachel, they may be onto something. Over the decades, I also found that post antibiotic treatment, for sinus issues, I also felt better for a few weeks. Even my Baseline remained at a much higher level for several months to a few years. This year, after many years of remission, something triggered a relapse. I can’t quite identify it but I’m going back to the antifungal diet I was on in 1986. Although I lost 30 lb in a month and looked like a ghost, I went into complete remission for at least a year until stress hit me hard. What I did find though was that by resting and removing most foods from my diet- particularly sugar, I would rebound very quickly.
Keeping my fingers crossed that we are finally seeing some movement towards a treatment for ME.
Hi Danielle,
Can you please email us? RemissionBiome@gmail.com
We would love to add your story to our collection. We aren’t the only ones who have felt significantly better after antibiotics!
-Tess
I used Probiotics starting with E Coli, then a combination of Bifidobacterium breve, Lactobacillus rhamnosus, Bifidobacterium bifidum, Bifidobacterium infantis, Bifidobacterium longum and finally Saccharomyces Boulardii in my son’s recovery.
Great to hear. How complete is your son’s recovery?
Check out Carol’s probiotic recovery story. She threw caution to the wind and gulped down a large number of them – and it worked. (Note that probiotics can affect some people negatively.)
https://www.healthrising.org/blog/2016/01/07/probiotics-cure-my-chronic-fatigue-syndrome/
Hi Cort, I’m very aware I have not yet written up his recovery in the format you sent me, so I apologise for that. His recovery is complete. He has bad days like a normal person would, where he feels tired and gets a headache and he knows not to stand for longer than 20 minutes but he takes an aspirin and feels better, exercises and recovers from colds quickly. No PEM! I have to emphasise that probiotics were only part of our protocol and other things that made a difference before and after that were the Covid vaccine, mould protocol, B1 mega doses, B12/9, Curcumin, methylphenidate and Mickel therapy. But we basically did everything we could and are fortunate that I had the time to do my own research and financial resources to dedicate to his recovery and pay for lots of different medical and fatigue practitioners. I promise I will get to it soon!
Thanks Christobel and a hearty congratulations! No PEM -that is really something.
I had this happen to me too! When I took Amoxclav twice a day for 2 weeks for a bacterial sinusitis. It was like coming out of a dark tunnel for 8 weeks and thinking I was well! Then suddenly, it got so much worse, and I was the sickest I had ever been. Shortly thereafter I was disgnosed with SIBO and treated the old fashioned way with both Rifaxamin and Neomycin. Both helped a little. I remain intrigued about taking statins to rebalance archea in some way. I wonder if this venture includes anything about this.
I want to join these warriors!
Marti, Can you please email RemissionBiome@gmail.com if you don’t mind sharing more of your story with us? Experiences that are different than ours (decreased baseline vs increased) might give us even more information that cases that are the same.
Doxycycline and minocycline are interesting choices for many reasons. They seem to have potent anti inflammatory properties and cross the BBB. They also appear to help the extra cellular matrix function correctly, so it’s being studied in Ehlers Danlos Syndrome. I know two EDS/POTS/MCAS patients who went into remission after a long course of doxycycline.
Exactly! The hEDS research is super applicable for us as I am hEDS and Tess is HSD. We also went with Doxy and Mino as they affect microglial activation.
do you think, can the positive effect of doxycycline occur only due to the anti-inflammatory effect, and based on this, can submicrobial doses (which are effective in periodontitis and rosacea) help?
Do a google scholar search on Doxycycline and Minocycline and microglia. There is more going on than just anti-inflammatory action.
This boggles my mind (in a good way). We have a teenage daughter whose health has taken a dramatic turn. She suffers from hEDS, MCAS, POTS, severe gastroparesis, and chronic fatigue. Most of her symptoms developed steadily during puberty and after a Lyme infection and encephalitis. I’ve asked her doctors about doxycycline and erythromycin for hEDS and GP, but have been shot down. I would do anything to help this kid have a better life. Your research gives me hope. Very best of luck to you both!
Isn’t it ridiculous that it’s just antibiotics you are asking for, that they could have potential dramatically life-altering effects, and that the idiots of your doctors don’t want to prescribe them, give them a try?
What they are doing is a crime.
Tamara here (from RemissionBiome.org)….we are so excited to have the Health Rising available for people to read! Thank you Natalia for a great write-up.
Please follow us on twitter at @chydorina and @ales_frost and @remissionbiome. We are also on facebook and instagram but dont post quite as much on those channels.
We do have a youtube channel: https://www.youtube.com/@remissionbiome and our first podcast can be found there.
Our Phase 2 gofundme is also underway which will bring the ‘project to the people’ and provide kits and protocols. Please consider supporting us: https://www.gofundme.com/f/Remissionbiome
We have an amazing team sponsoring @remissionbiome but are always on the lookout for new tests to try, medical devices, and services. If you know of a potential sponsor please get in touch.
Finally, bookmark remissionbiome.org and get in touch directly if you have questions – we will respond (twitter DM) contact is best.
but will a lower dose be enough? for example 50 mg, in this dose they have an anti-inflammatory effect and an effect that inhibits matrix proteases? Do you consider their antibiotic action to be a key player in this and therefore necessary “antibacterial dosage” starting at 100 mg and more?
For the Doxy and Minocycline, we’re more interested in the anti-inflammatory effects, particularly on the microglia.
I see they’re supplementing with Butyrate.
I’m too ill to do in-depth research myself.
Keep seeing mixed messages on whether or not currently available Butyrate supplements are absorbed/of value.
Cort- maybe you or someone well versed could do an article on this?
The Remission Biome team clearly thinks there’s value. Maybe they could explain why they think that and chose the product they did (TrixButyrin-X).
Appreciate any help!
Here’s a thread that Tamara created about butyrate: https://twitter.com/chydorina/status/1623753574273650688?s=20
Tributyrin-X is recommended by https://thegutclub.org/
May I know what dosages you will be using? Does the dosage of 50 mg, which is proven to relieve inflammation in rosacea and periodontitis, work?
We actually did a big article on enhancing butyrate actually but we did not have TrixButyrin-X on the list. I will put it on there :).
From fermented foods to diet to prebiotics, probiotics and supplements, and even drugs like metformin there are a surprising number of ways to enhance butyrate levels.
https://www.healthrising.org/blog/2021/11/24/butyrate-chronic-fatigue-syndrome-long-covid-bacteria/
I experienced a short-lived dramatic improvement of symptoms, including an improvement of gastrointestinal symptoms, after taking a short course of antibiotics some years ago. I can’t remember which antibiotic it was or even why I was taking it, but I’ve always remembered the sudden feeling of overall improvement.
Hi Dan,
Can you please email us? RemissionBiome@gmail.com
We would love to add your story to our collection. We aren’t the only ones!
-Tess
The only time I experienced a remission feeling was once in the early ME years, during a bout of norovirus with severe diarrhea. It was short lived, and I still had norovirus, but I felt like a well person who was sick vs a person with ME.
Now, what will give me a positive “bump” for a few days is a dose of fluconazole, but it doesn’t last if I take it daily.
No course of antibiotics for SIBO or other issues never resulted in a remission.
Gosh, how interesting. I also felt heaps better ME wise when I developed microscopic colitis. To try and calm the constant diarrhoea, I went on the gaps diet, not really getting out of stage 1 for weeks. I felt a clarity I hadn’t felt for years.
Hi Birdie. Interesting. I took 2 weeks prescription Itraconazole to treat eczema, and for two weeks-one month I doubled my daily steps, without increasing CFS disease effects. I talked to my internist about it, but he did not make any link. I wonder whether taking fungicides in a similar scientific study would be helpful.
I wonder if it is worth trying Akkermansia and Nella without the antibiotics first? They are pretty expensive on Amazon. I know there are particular bacteria missing from ME/CFS microbiomes, but are there bad actors present in too high amounts too in ME/CFS? Is that why the antibiotics work? I’m looking forward to hearing about their results.
I have done both, Akkermansia (from Pendulum) and Nella separately. No differences noted but I was not doing testing or microbiome sampling.
Fitbiomics is currently working on a Veillonella probiotic – which is VERY interesting.
https://cfsremission.com/2019/07/14/a-short-me-cfs-mcs-remission-with-microbiome-samples/
I’m a little wary of Nella. Their current product is just 3 fairly common Lactobacillus strains, and all of their testing (and results) is not very scientific (no double blind studies etc – so very susceptible to placebo effect). A lot of comments on the product page with people saying “no benefit” and various delivery issues.
The Veillonella strain is very interesting, but reading between the lines they are having a lot of trouble developing an effective probiotic with it (as with numerous strains of gut bacteria, they can’t survive easily outside of the gut biome).
I had a full GI Map done last year and had a lot of dysbiosis (lots of bad species like strep etc), no akkermansia and various indicators of leaky gut (which goes hand-in-hand with the akkermansia result as it forms a bioprotective layer on the gut wall). After seeing a gastroenterologist I am now in line for a Fecal Microbiota Transplant. He basically said that once the gut biome gets to a certain state (like mine), it’s almost impossible for it to recover as some species are either extinct or wholly suppressed by others, and the best/fastest way to recovering is a full biome replacement from a healthy gut. In the meantime I’ve just started taking akkermansia to try and get a head start on repairing my gut wall (along with collagen supplements). I’m not expecting to feel that much better as I’m still full of strep and (according to the gastro) every time I eat they are dumping toxins straight into my bloodstream.
They have had a lot of success with FMT, and when you think about it, it makes sense. The gut biome is a complex mix of 500+ bacteria species (thousands of sub-species), many with functions not readily understood presently. If some are killed off, how do you know which ones (as most aren’t tested for) and how can you repopulate if they are gone? It explains why some people get a temporary reprieve from taking a specific antibiotic for something else, as it’s probably knocking back some dysbiotic species, but without other species to keep it in check it eventually makes a come back.
The FMT procedure (for anyone interested) is:
– 2 weeks of special antibiotics and antifungals to primarily kill off the “bad” species etc (there is collateral damage to good species, but that’s not that important with this procedure).
– Full “flush” the night before the operation.
– First transplant (from 3 different healthy/screened donors) by colonoscopy to ensure it gets as far up in the gut as possible.
– 9 subsequent days of specially prepared enemas (I do these myself apparently. Can’t say I’m looking forward to it, but right now I’d walk through fire to get well again).
I’m booked in for the end of March. I’ll report back on these forums afterward. Fingers crossed.
Good luck! I would be doing FMT if it was available to me.
We will do a blog post on why we are using different probiotics and the points in the protocol where they will be introduced. Stay tuned: remissionbiome.org
Hi Tamara. Have either of you done the test from vibrant. Omequant complete?
My practitioner had me order it to sho which probiotic would be best. I don’t understand it all yet but can let u know
Example. Due to s cerrevasie on labs I won’t take s bouldardi
I am so intrigued by this! I am convinced my long COVID and now ME/CFS are from gut dysbiosis. Two years ago, my infectious disease doctor put me on cromolyn sodium for MCAS. Within a day of starting it, I was throwing up all day and ended up in the ER. Apparently it was a pretty rare reaction, but the interesting thing is that for the next several days, with my guts emptied out, my fatigue was greatly lifted. It obviously didn’t last.
Then last summer, my FMD put me on what he called the “Brogna protocol,” named for Italian researcher Carlo Brogna who found COVID particles inside normally healthy gut cells. He put me on Amoxicillin and Xifaxan for a few weeks, as well as tributyrin. No change to my fatigue, but my BMs normalized for the first time since I got COVID in March 2020. The normal BMs didn’t last though once I was done with the antibiotics.
Last September I had an atypical chest infection. I was given clarithromycin. I felt dreadful on it. It took me about a month to feel I could get back to sorting out all the neglected stuff on my desk, etc. I thought I had improved but by December I was aware of feeling dreadful, and I am still very weary and now sleeping up to 10 hours a night instead of my usual 7-8 hours. I’m not sure if I have simply gone downhill after the infection, or if it’s a result of something else, like new medication/supplements. I’m afraid I am showing the opposite from your pattern. However, I wish you well. I look forward to hearing the results.
This is such awesome news!! I improved on a series of antibiotics but it was short lived and not replicable. I have recently started a gut healing protocol based on a book called “the immunity code”, (Joel Green) and it includes HMO oligosaccharides and apple peel powder to increase the akkermansia. I did the 30 day reset and my gut is much improved. For those of us with ME/CFS though, I know there are other steps to take and your protocol makes so much sense. Im going to try butyrate supplement now.
I’m afraid of doxycycline and minocycline, they raise my intracranial pressure.
I wish you the best in your healing journey and will follow your progress!!!
I’m f
3 comments—
1- A relative had recent Covid infxn, said after recovery that it’s the best he’s felt in years! He has no remarkable health history other than sleep apnea.
2- What about low-dose doxy (40mg extended release or 20mg twice daily) for LC or ME/CFS treatment or maintenance? Not sure if anyone has tried that but it’s a sub-antimicrobial dose, much safer long-term if needed.
3- Has anyone talked about fecal transplants for these conditions to reset the intestinal microbiome?
Lisa, yes fecal transplant for me/cfs is being studied in the UK, funded by the charity Invest in ME Research. The study is led by Simon Carding of the Quadram Institute.
Cort also wrote an article on FMT here in 2021: “ Fecal Transplants – Do They Work? An IBS / Chronic Fatigue Syndrome (ME/CFS) Perspective.”
Thanks for this info!
I know of a few people who had remission of their me/cfs symptoms when sick with Covid or another virus. My only guess is that there is some alteration of the immune system taking place. Perhaps even a brief distraction of the immune system? They weren’t on antibiotics in this case.
Hey you guys should really get in contact with the owner of this website https://cfsremission.com/, he’s been doing a lot of self research with microbiome and CFS
We’ve been in touch with him and have based some of our protocol on his suggestions. He also analyzed Tamara’s 2019 remission microbiome samples:
https://cfsremission.com/2019/07/14/a-short-me-cfs-mcs-remission-with-microbiome-samples/
Very exciting patient science + biohacking! I’m seeing elements of virtually every promising theory in your hypothesis diagram. From the hard science of Naviaux and Phair, to even ketogenesis as per Myhill’s protocol.
No antibiotic story, personally. My 9 month remission (a decade ago) was off the back of uncovering my histamine and dietary (IgG mediated) intolerances (to dairy, yeast, egg). After that faded, it had moved my symptoms around from ambiguous fatigue weakness/inattention without any PEM (even after sport), to much improved cognition and no daily crashes, but more typical physical ME/CFS presentation.
My non-24 sleep went from 24.8h cycles to 25.6h, too, after a temporary fix for that also failed (I was later suspicious of tryptophan supplementation).
I spent that remission year intensely pursuing nutritional therapy/testing and it was fascinating and validating to later see my e.g. depleted serum amino acid levels echoed in the first metabolomics studies on our disease.
I had high butyrate in stool, though. And also ran a couple of uBiome samples (sad to see them fold, as you’ve mentioned): initially saw only elevated verrucomicrobia (unusual) which disappeared in a follow-up. That showed high (93%) biodiversity (if a true insight), even before a half-arsed gut protocol +Symprove. So it would seem counter-intuitive to potentially damage that..?
Years before this, I’d had a revelation when first trying 5-HTP, from hypomanic energy for a couple of days. Raised dopamine too, perhaps? As SSRIs never did anything for my decade gradual undiagnosed onset. I could never replicate that, which is apparently normal (?). But the mechanism for that kind of one-time effect seems bizarre…
During remission, tyrosine gave another one-off boost (I think). But the closest to your feelings of brighter colours and such, was my first time trying taurine (despite it being my only amino testing (very) high): 1 day of crystal clear cognition, great mood and music sounded *so good* and emotive. Again, never repeated and didn’t seem to have any lasting effect.
Hi. This sounds very interesting. I’m wondering about the choice of antibiotics though, as one is a penicillin. I’m supposedly allergic to penicillin from a rash in childhood, but I believe it’s quite a common allergy? I presume that there would be an alternative?
Hayley
This is so exciting! A couple of thoughts:
Some PwME experience remissions not triggered by antibiotics. Learning regarding remission mechanisms from this research may indicate how/why other remission triggers have acted. After 7 years with ME my partner Elle had a remission, including the ‘brighter colours’ experience, which literally & visibly began in the hour after she began high-dose B1, and lasted 5 months. It faded away following her second Covid jab.
Sadly, it seems to be quite usual that PwME who’ve experienced remissions aren’t able to reproduce them – the trigger doesn’t work a second time (Elle has stopped & re-started B1 a couple of times, she believes it helps her cognitively but the remission experience doesn’t repeat).
Good luck to the researchers – finding a way to trigger remissions would be mind-blowing!
Very interesting story. Thanks for sharing. To me, it raises the question of what it means to relapse. For example, if your partner experienced an inflammatory reaction to the second jab that led to vascular damage, the resulting vascular hyperpermeability may be an additional layer of pathology that indepedently causes ME symptoms. So I wonder if perhaps B1 is still doing what it always did, but that’s now not enough to feel a lot better due to the vascular damage? My daughter likewise benefitted substantially from high-dose thimaine, but after a massive inflammatory event some months later, I believe she experienced vascular damage that has taken a very long time to heal. She is still on high-dose thiamine, and we think still benefitting from it, but until the vascular damage has healed, the effects of that damage will overshadow everything else. My daughter is starting to see substantial improvement, but it has taken several years . . .
I hope these brave women do not come out “worse for the wear” from all of those antibiotics. Some GI Doc’s feel that the colon’s microbial population can take up to two years to recover from a single course of antibiotics. They’ll be in my thoughts and prayers.
When I had the norovirus in 2019, my body’s reaction to it very quickly cleared out my gut. The next morning I woke up feeling like the ME had gone! Despite having to get to the hospital for an x-ray (due to fainting and breaking my shoulder in the night) and spending ages waiting there in isolation, all of which would normally have set off PEM, I continued to feel well for about ten days afterwards. The ME symptoms came back but my baseline stayed higher. After that I was able to use my mobility scooter without getting PEM and I still do!
This is so exciting! A couple of thoughts:
Some PwME experience remissions not triggered by antibiotics. Learning regarding remission mechanisms from this research may indicate how/why other remission triggers have acted. After 7 years with ME my partner Elle had a remission, including the ‘brighter colours’ experience, which literally & visibly began in the hour after she began high-dose B1, and lasted 5 months. It faded away following her second Covid jab.
Sadly, it seems to be quite usual that PwME who’ve experienced remissions aren’t able to reproduce them – the trigger doesn’t work a second time (Elle has stopped & re-started B1 a couple of times, she believes it helps her cognitively but the remission experience doesn’t repeat).
Good luck to the researchers – finding a way to trigger remissions would be mind-blowing!
Thinking about my post above, I wonder if they might consider including a third person in the research – someone who has had at least one remission previously (so their ME is susceptible to a remission trigger), but who hasn’t had a remission triggered by antibiotics (so the ‘trigger doesn’t reproduce the effect’ issue isn’t in play)? Just a thought.
Good idea. We’re actually working on bringing in more participants for a second phase of the experiment.
It’s definitely interesting to look at other triggers of spontaneous remission. We have come across some from colonoscopy prep.
Tess,
Longhauler here who experienced exactly something of a remission with colonoscopy prep. It’s the fasting piece. Couldn’t fasting produce some of the same effects as antibiotic treatment? Subsequent to colonoscopy I’ve noticed I always feel better when fasting. Especially longer fasts. Right now I’m doing weekly 48-72 hour fasts. Other Longhaulers have similar experiences to fasting or sometimes even just a Carnivore or Ketogenic Diet:
https://www.facebook.com/groups/recoverfromlongcovid
I’m also in the midst of a gut-rebuilding program with Functional Medicine at Cleveland Clinic that looks something like your experiment minus the antibiotic component. In addition to favorably altering the microbiome, fasting can produce favorably effects from autophagy if there is viral persistence. I believe it also boosts Akkermansia by itself. It also triggers Ketosis if I’m not mistaken. And it also may help with nerve regeneration, and many Longhaulers including myself have predominantly neurological symptoms from Long Covid and especially vaccine-induced Long Covid:
https://www.nature.com/articles/s41392-022-01186-6
I’m becoming a big believer in the Bacteriophage theory of ME/CFS/Long Covid. Especially the more I read from people like Carlo Brogna, Amy Proal, Leo Galland and others.
https://www.mdpi.com/2076-393X/10/5/708
I had a very bad exacerbation, lasting months, that started during a colonoscopy prep and seemed to have no other cause.
Separately, I had marked temporary improvements on two occasions after taking cephalexin.
In late 2018 Elle also had an amazing response to colonoscopy prep. We called it a gut re-set at the time. She’d lost weight slowly but continuously for around 2 years despite eating well over 2000 calories a day. Then in Summer 2018 she had a really bad stomach bug, after which she could keep down virtually nothing but plain rice and cashew nuts(!) Her BMI at lowest was 15.8 which is seriously underweight. In December 2018 she had a colonoscopy, following which it became immediately & remarkably much easier to expand the range of foods she was able to eat; over the following 6 months she put on weight for the first time in over 2 years. 6 months later her BMI was 18.7 (within normal range), where it has remained ever since. The colonoscopy was supposed to be an investigation (which, of course, confirmed there was nothing wrong!) – but unquestionably worked as one of the most effective treatments she’s ever had for any aspect of her ME, by somehow re-setting her gut.
What kind of B1? benfotiamine Or thiamine or other. And what’s the daily dose?
We started B1 after reading Jeffrey Lubell’s blog on HR: https://www.healthrising.org/blog/2021/06/02/fibromyalgia-chronic-fatigue-syndrome-benefit-high-dose-thiamine/
She began Thiamine Mononitrate on a low dose of 100mg / day. We decided on that kind of B1 simply because we could get it in a 100mg dose. Elle starts everything at very low levels as we’ve found new supplements often cause her issues but are better tolerated after a while. We expected to build to a higher dose (as taken by most of Jeffrey Lubell’s participants) and maybe to move to a different type of B1 as time went on, but that wasn’t needed as Elle’s remission response was obvious within an hour of taking the first dose. I wrote about it after 23 days in the comments section of the blog post I’ve linked above.
I read a blog a few years ago about a young man who suffered with chronic fatigue syndrome. His GP put him on a 3 month course of antibiotics and this he said, totally cured him of cfs. I don’t recall the source of the blog now.
Since 1990, our organization I has worked with Gulf War veterans. Nearly one third of the veterans who served in the first Gulf War have Gulf War Syndrome with symptoms almost identical to ME/CFS.
GW veterans have also had elevations to the same herpes family viruses as found in patients with ME/CFS.
https://pubmed.ncbi.nlm.nih.gov/28303641/
In the early 2000’s some veterans had symptom remissions with long term antibiotic treatment, doxycycline in most cases. It was hypothesized that mycoplasma might be the cause of GW illness.
The national veterans groups pressured congress to fund a large study on antibiotics in GW veterans.
The study did not find any lasting effects of antibiotic treatment.
https://pubmed.ncbi.nlm.nih.gov/15262663/
Not from antibiotics but a stomach infection(noro virus) completely eliminated my CFS Symptoms for 2 days.
This happened in 2020 and I caught CFS from. dengue virus in 2017
This is just an excellent project – I wish you both the best success!
And who better to venture into the dark unknowns of PWMEs’ microbiomes than someone who designed NASA missions!
Does theme from Star Trek pop into anyone else’s mind? Boldly we go where no man has gone before 🙂
Yes! 😄
It’s really interesting to see more detail about what Tess and Tamara are doing and learn more about them, as individuals. I’ve been following them for a while now, on Twitter. I had previously forgotten but I had a brief improvement in my symptoms, back in early 2010, whilst taking the triple therapy for H.pylori. (I did say to Tess). I had an idea that my gut was out of balance and I’ve spent over ten years trying to sort it out and deal with the extensive food intolerances I’ve had.
I’ve been drawn to the work of people like Jarred Younger, Robert Naviaux, Robert Phair, Amy Proal and Michael VanElzakker. I’ve also been influenced by many of the functional medicine practitioners. I’ve managed to make a lot of progress, particularly over the last 6 months/year and something has definitely changed within me. I’m still figuring out what I can do and what I can eat, without triggering an adverse reaction. I’m looking forward to seeing how this experiment goes.
I’m not sure if I see why this article deserves to chew up the precious limited space on this blog.
– A 2-person study?
– On the microbiome, which is both “buzzy,” and the ME/CFS community has been aware of and experimenting on for decades?
– Is this supposed to serve as a model for “patient-driven research”? Haven’t we been reading about p/w/CFS doing this–often in conjunction with specialists–for decades?
– Now, if at the end there are positive and definitive, results, maybe then we should see a write-up. But even then, is there no reason to wait until it is replicated on even a slightly larger group?
Not trying to be negative, but just perplexed. I do wish the subjects and their doctors and donors the best possible results.
I’m one of the two people doing the self-experiment. We think it’s interesting and unique, because of the amount of testing we’ll be doing during the experiment and that we’re taking a multi-intervention approach based on possible hypotheses. This type of study is not going to be done in a traditional research setting and would be difficult/impossible to do with a large N. We’re each collecting over 50 samples throughout the experiment! That doesn’t even count regular at home testing with devices, daily symptom tracking, etc. https://remissionbiome.org/planned-protocol/
Another unique aspect that would be difficult to do during a traditional study is that we will be able to sample right away, at home, if we have a remission event. We’ll be able to catch any short-term changes.
Regarding the microbiome being “buzzy”, we focus on that because we think it could be a large part of the puzzle, but our project is actually really trying to kick the whole system into a different state, not just the microbiome. We’re also going after inflammation, microglial activation, etc. https://remissionbiome.org/hypotheses/
For patients already self-experiment and doing this with specialists: yes. Tamara and I have been “biohacking” since we got sick, doing self-experiments, but this is different. Our biohacking never brought about a remission event like we both experienced. As far as I know, nobody is doing as much testing on a short time scale like this to catch a unique remission event that could give us clues to the pathophysiology of ME/CFS. If anyone knows otherwise, I would love to talk anyone doing complex experiments like this!
As far as sharing now, rather than waiting, many people are enjoying following along with the process. They don’t want to just wait for results. They are giving us input and helping to shape the project. https://twitter.com/remissionbiome
Anyway, thanks for bringing up these issues. I’m sure other people have wondered the same thing.
1. Yes! That is where it starts n=1 to 1 to N (see https://twitter.com/eperlste). This pilot study is Phase 1 and in a few months we are moving into Phase 2.
2. Both of us are also science PhDs and MECFS patients.
3. Tamara was involved in microbiome research since 2007 (right when it started).
4. Both of us had the exact same short-term ‘remission’ experience and since we discovered each other we have found dozens of others who have reported not just feeling better on antibiotics but a complete ‘off’ switch of symptoms for a period of time. This is pretty remarkable.
5. Tamara and Tess worked independently for years on their models and theories of MECFS and the theory behind the simple intervention ties into the work of Davis, Phair, and Naviaux (among others). We are now working with Phair and others and have multiple experts from glial to gut associated with the project.
6. We actually have a theoretical model and are testing it. Systems biology/thinking is an area of interest for both of us – I was a food web ecologist and Tess did systems work in astrophysics.
I could go on …
Thanks for asking…why us is a great question!
Two amazing women !! I was an NP. Had mild ME/CFS, got better, had a covid booster, got ME/CFS again. Now have off-the-map levels of EBV,CMV. Do you have reactivated viruses?
The buzzy microbiome: Tamara published the first study on human food webs with grad student Marina Ritchie back in 2011.
https://dalspace.library.dal.ca/bitstream/handle/10222/14415/Ritchie_Marina_MSc_BIOL_December_2011.pdf
We also published on probiotics. https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0034938
Unfortunately my research in this area was cut short by MECFS.
As a model for patient-driven research I cannot imagine a better one than n=1 to 1 to N. Plus, we are not testing someone else’s hypothesis. This is patient-led research – not simply specialist supervised biohacking.
Why write it up now? I think there are many reasons.
First, HOPE. We had a short term remission from a very safe treatment that permanently increased our baselines and we know of others with the same experience. Its worth trying, especially if you get an infection and are being prescribed antibiotics. Why not ask for AmoxClav and give the protocol a shot.
Second, To collect cases studies of people who have experienced a similar event we need to get the word out there. Every case is important for our database and helps inform theory and practice.
Third, Funding. I am on a disability pension and could not afford to pay for any of the testing from my own pocket. To get the type of funding needed for Phase 2 – we needed to have a pilot Phase 1.
Once again, I could go on but I think you get the idea. All great questions and I am so happy to address them. Thanks!!
Traditional medicine has done very little for ME or FM. The doctors seem to follow routinized protocols that only address symptoms. These conditions need some people with new ideas and those that can think outside the box.
It would be nice to have a bigger trial but I honestly doubt we’ll see anything like that until we get small studies like this done. I just don’t see this type of complexity in the average treatment trial which usually tests one thing at a time. This effort includes a gut wipeout using various substances and then replenishment using various substances. While we’d all like to see bigger trials I think small trials like this are just going to be crucial to getting those trials underway. We have to start somewhere!
I may be wrong but I don’t remember any patient-driven research efforts this complex that has gotten so far as to get the funding needed to do the kind of extensive testing done. I think the results are going to be fascinating. Let’s hope it works for them and for us.
Wild to read this because Im a Biomed Sciences PhD student and with the recent publication releases, and my own experience- have just started a similar protocol of my own!
I experienced a few months of remission in 2019 and have been trying to replicate this for awhile. Same thing I experienced with colors becoming more vivid and food tasting better among other improvements that occurred for the first time in my life. Notably, I wasnt using antibiotics during this time. And I was meditating daily first thing in the morning outside for 30+ minutes, which is difficult to do now (I moved from the place I was living at, at this time, and I relapsed). Based on recent research and what checks out for me, my new n=1 experiment is trying this combination:
– eliminating/reducing LCFA in foods (evoo, coconut, dairy, supplements in oils, bacon/beef/sausage, egg yolks, etc were the big ones for me)
– supplementing with MCT oil
– butyrate-increasing probiotics (Glucose Control from Pendulum, two other probiotics with multiple strains- will try these one at a time to gauge for individual improvement with tracking different strains)
– very low carb/keto diet (no dairy, increasing fiber with vegetables/leafy greens/psyllum husks, high protein w/chicken, fish, turkey, egg whites- similar to Whals protocol)
– ordered the Apollo Neuro bracelet to see if this helps me reset my nervous system (to replicate the meditation).
-supplementing with curcumin, vit c, bcomplex
So far the biggest thing that is helping that Ive started already is eliminating/reducing LCFAs from my diet. Waiting yet for a few orders to arrive but Im HOPEFUL too!
Best of luck to Tess and Tamara with your experiment! Look forward to seeing your results.
Thanks for sharing your interesting protocol Michelle, and good luck! 🙂
This was the 2019 analysis and report from Ken Lassesen at cfsremission.org
https://cfsremission.com/2019/07/14/a-short-me-cfs-mcs-remission-with-microbiome-samples/
I had sampled my microbiome a few weeks prior to the ‘event’ and had a kit on hand so I sampled the day after the ‘event’
Some interesting results re: tryptophan metabolites, lactate consumers etc.
Worth a read.
Thanks to Ken Lassesen at cfsremission.org and microbiomeprescription.org for all he does for our community as well!
There are a whole bunch of people doing fecal transplants in the Facebook group
Hi. I’m quite prepared to be told this is a silly comment. I have little knowledge and only my own experience.
But I feel as if I’ve woken up on another planet. After 11 years of severe, bedridden ME, there are symptoms now which were never mentioned years ago. I have no pain, other than hideous migraine and myoclonus jerk occasionally in my legs. I also have no gut issues at all. Neither are compulsory biomarkers for ME.
I don’t even know what microbiome means and now everyone is talking about it. Are they saying gut health can cause poor balance, post exertional malaise, blurry vision, chest fatugue etc? I don’t have the “bandwidth” to read much so I’m sure I’m missing a lot.
I’m really not trying to be controversial. I appreciate any efforts in any direction by anybody so thank you. But what about control groups, placebo effect….
Studies show that changes in the gut microbiome – the millions of bacteria in the gut – which need not produce symptoms by the way – can be associated with neuroinflammation of the brain. That sounds crazy but it’s true. Inflammation in the gut can translate to inflammation in the brain and vice versa apparently. In the middle of all this is the vagus nerve which is tweaked in ME/CFS and transmits signals between the brain and the gut.
Time will tell – I get tired of saying that again and again – what role the gut plays in this disease – but the gut-brain connection is being vigorously explored in neurological diseases like multiple sclerosis, Alzheimer’s and Parkinsons’ – and, of course, ME/CFS. For me, I wonder if some sort of dysfunctional gut soup might be sparking or helping to trigger a variety of diseases.
Lastly, if Ian Lipkin thinks the gut may be in play in ME/CFS – who am I to say otherwise. 🙂
Thank you Cort. Interesting; I didn’t realise how strong the link 🙂
Cort, I agree. Dr. Lipkin is brilliant. I am glad he is “in the fight”. (You too!) I still do not understand the physiology behind the results of the study involving the mouse population, where they severed the vagus nerve. It seems that the results are backwards. Glad you are back!
The vagus nerve clearly has more tricks up its sleeve than we know. 🙂 Thanks!
You don’t have to have obvious gut issues to have even severe gut dysbiosis. I had none either – but my tests showed SEVERE abnormalities and inflammation. That’s the weird thing
Thanks Daff. I have had my upper GI, midriff and colon all scanned and scoped this year. No problems whatever. The problem turns out to be gynae. Not linked to ME.
Good luck on this amazing journey! Just flagging that I’m interested in the properties of doxycycline in reducing vascular hyperpermeability, which seems to be at the route of many ME symptoms. See https://pubmed.ncbi.nlm.nih.gov/18606869/ and https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8967830/
Jeff, vascular hyperpermiability would also explain Dr. Systrom’s results. Low right atrial pressure from the veins returning deoxygenated blood. All of his test patients ME/CFS symptoms improved when placed on Pyridostigmine for a year. I would bet that leaving more acetylcholine in the synapse at the ganglion does more than vasoconstrict the veins. Acetylcholine probably also reduces leakage when it vasoconstricts the smooth muscle tissue in the veins.
This is from Dave – who’s comment got mangled in the comment machinery 🙂
“Wow! I can relate! I am 37 years CFS/Fibro and have tried so many things – to no avail. Only one treatment regimen ever provided me with (an approx 10 day) complete (plus) remission; A 3 med combo regimen for H. Pylori (even though I had tested negative for it), prescribed (as a test) by my Doc. It consisted of 1 week of prep with bismuth (from pepto-bismol), with minocycline (or tetracycline?) plus Biaxin (clarithromycin) then added to the bismuth for 2 more weeks (of all 3).
During wk 1 of the abx, I almost gave it up as I experienced even worse than usual fatigue. Then, to my surprise, during the second week of the abx I had a complete remission of all symptoms. I felt better than I had ever remembered feeling in my life! (Words cannot explain). I thought I had finally been cured, but after I stopped the triple regimen, my previous symptoms slowly returned.
Note that in response to previous research summarized by Cort on possible viral causes of CFS/Fibro, I checked the internet to find that Bismuth, Minocycline (or Tetracycline) and Clarithromycin all (also) have anti-viral properties, which might explain the viral link (as viruses are part of the microbiome as well).
I am so looking forward to the results of this test/study! Since nothing else even came close to this amazing level of remission that I experienced, I know that there must be some “there” there!
Kudos and best of luck to these Researchers!
Thanks, Dave – we recently changed the way the comments work – altho it seems to be working well, that may have had something to do with it.
Thanks for your nice words and thanks again to Natalia for her wonderfully written blog 🙂
Off topic but interesting potential treatment for long covid and maybe ME/CFS:
https://www.businesswire.com/news/home/20230216005717/en/New-Data-Links-Modulation-of-Key-Immune-Related-Proteins-to-Improvement-of-Specific-Symptoms-in-Long-COVID
I’m an 80 year old psychiatrist just about to retire from treating PTSD for 50 years. I got CFS in 2006 following a surgical complication and I’ve had it ever since with increasing illness. Prior to that I developed fibromyalgia in 1998 following pneumonia, a 20 pound weight loss and a months treatment with erythromycin. The fibromyalgia is gone, and sadly morphed into CFS. I’ve been on various supplements for nutrition, developed pellagra from CFS. I am disabled frequently on a daily basis with sinus tachycardia. It occurred to me to try beet supplement because it dilates blood vessels. Much to my relief in an adequate dosage it prevent the sinus tachycardia and therefore, my suddenly feeling fatigued, weak, depressed and sleepy. I donor have POTS. I also began taking GutMagnific to help My beleaguered Microbiome. The gut Magnific to help regular rise, my bowel movements, and when I increased it to four capsules a day, my very long term depression that originally was caused by contaminated L-tryptophan damaging my brain. For a few weeks I went into complete remission. I was happy and back to my pre-depression state for about two weeks , but it didn’t affect my CFS. I got CDiff for the first time at the same time. I developed a surgical complication. I had attempted treatment for two years with various antibiotics with no benefit. I then found out about FMTs, and got one of those from a friend and got immediate relief. I then got multiple FMTs over the course of two years from a location in the Bahamas, but with no benefit.
Another experiment I’ve done is sleeping in an oxygen tent with the oxygen set up to four or five. Unfortunately, even one night in the tent, cause a sinus infection for another reason. The sinus infections were treated with azithromycin, and with each sinus infection I noticed for the first couple of days after starting the Zithro my energy and mood improved, but then settled back down to its usual CFS state, but the additional oxygen for the day after I started, it gave me increased energy and mood. I couldn’t continue it each time because of the sinus infections caused by the dry air blowing on my sinuses. I too have looked at butyrate as a very important part of this illness , I will begin to do my own experimentation with a butyrate supplement and also with safe formulation of the bifidobacteria being used in the research. GutMagnific is patented and also approved by the FDA and I will continue that also and the beet powder also. I have given GutMagnific 25 or six friends of mine who have various G.I. complaints. In my experience it has treated.CIBO, irritable bowel syndrome, and bowel irregularity. It also treats, eczema and psoriasis, and is a treatment for treatment refractory CDiff.
I just finished the excellent book, The Invisible Kingdom, and the author also found relief with doxycycline. As all bodies react differently, I was on 2.5 months of antibiotics for a resistant UTI, which ramped up CFS/ME symptoms, caused a dangerous reaction, and left me with a chronic yeast infection months later, undoubtedly from antibiotic use. I took a specialized probiotic and still do, but I have been reactive to antibiotics. For that reason, I wish the study of the two brave women would begin with expanding gut bacteria first, for those of us who cannot risk antibiotics.
And, I forgot to mention, I ended up with Interstitial Cystitis after my 8 months crash and 2.5 months of antibiotics. It’s an autoimmune inflammatory condition, extremely reactive to a large number of foods that cause painful inflammation. All my symptoms point to gut dysbiosis, despite my boringly pure diet, which is why I’m even more hopeful about any study that focuses specifically on expanding a healthy gut microbiome. Sorry, but with all the elements to the planned study by the two patients, I wonder how they will be able to separate what the most effective treatment is, especially since some of those treatments may have a delayed reaction or benefit.
Sorry that you had such a negative response to the antibiotics. What type did you take?
For your question about separating what gives benefit, our #1 goal for this experiment is just to see if we can recreate a remission event. If we can, I bet it will increase the interest in studying this phenomenon. Also, we can use the results from the huge number of tests we’re doing to narrow down hypotheses for what might have happened, which could inform what interventions were more likely to have caused the remission.
Tests: https://remissionbiome.org/planned-protocol/
Hypotheses:
https://remissionbiome.org/hypotheses/
The answer to your question is that this is just the first study of this phenomenon that can give us clues for future studies.
We’re actually taking 3 probiotics + butyrate right now, before we take the antibiotics in mid-March. Here’s more info: https://remissionbiome.org/planned-protocol/
Hopefully we will be able to tease out the mechanisms that caused antibiotics to work so well for us and that will shed light on why they affect other people differently.
Great that this effort involves two people with such a good scientific pedigree, I hadn’t realised that when I heard of them before. And a real indication of the value of their work that they have been able to secure some funding towards it. Thanks for all your work guys (and to Cort, as always, for keeping us in the loop)!
I really want to try butyrate supplementation, but I found studies that report that it can activate viruses like EBV. Perhaps, I didn’t understand this correctly. I hope that any clinicians or scientists who may read these comments may clarify this.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6330347/
“EBV reactivation can also be triggered by phorbol ester 12-0-tetradecanoyl phorbol-13-acetate (TPA), sodium butyrate or calcium ionophores (Kenney, 2007; Murata, 2014).”
This is exciting! I thank you for this and wish you all the best. I will be following closely and look forward to your discoveries and possible protocols to get our lives back! Thank you thank you thank you!
I agree with the biome/fatigue link, and I have been engaging in gut decontamination in patients for years, mostly with botanical antibiotics, with incredible results. Good luck on your journey! I have also published a book on Long COVID, which has a lot in common with CFS, in case you are interested in learning more about what has worked for my patients.
The Long COVID Solution, by Dr. Carla Kuon. I hope it helps you and others who suffer.
yea
The only antibiotic i know which helped in ME/CFS is azithromycin.
Most antibiotic makes the dysbiose much worse.
https://pubmed.ncbi.nlm.nih.gov/16911783/
Brilliant!
I have been taking antibiotics with short term remissions for nearly 20 years, but the Bacteria causing this have caused resistance to 8 antibiotics so far.
I was diagnosed with ME, CFS and Fibromyalgia then later D-lactic acidosis (but I have just read an article from the Journal of Nutrition, Evaschuk, Naylor and Zello, that states that there are a number of organic acids that can cause the same symptoms in Overgrowth; Formate, Succinate, Endotoxins etc.).
I had often wondered if I was in fact treating my immune system; I had the most success with Metronidazole using it for 15 years, before it failed; but had put this down to antibiotic resistance.
All I know is that I was diagnosed with Bacterial Overgrowth 3 times prior to D-lactic acidosis and my symptoms go into remission temporarily before slow increase to being very unwell.
But it is possible/probable that I also have low Bacterial Species especially after using multiple antibiotics that may be implicated in abnormal microbiome.
I am in a hopeless loop moving towards total resistance and now getting new symptoms that may be autoimmune.
The NHS in the UK are making it impossible for me and will not perform a Faecal Assay to determine which Bacteria are causing the Overgrowth or for Low Species. They have made it impossible for me to have a D-lactic Assay and even used an Assay performed 18 hours after my symptoms had stopped to say that they could find no evidence of D-lactic acidosis. I was in the Hospital all day, the previous day, with symptoms including speech difficulty due to muscle weakness and but they would not perform the Assay; thankfully I had videoed myself.
I believe that they are covering up any evidence of my illness.
They are not allowing me any further investigations or to go to a Fibromyalgia Hospital, where I was first diagnosed; I had asked to see a Rheumatologist due to a number of new problems that may be autoimmune.
Wait. You used metronidazole for 15 years?
Was that all regular or breaks in between?
There’s a series of blog posts of people improving their symptoms using the microbiome here: https://cfsremission.com/treatment/analysis-posts-on-long-covid-and-me-cfs/
The science and method is described here:
http://blog.microbiomeprescription.com/research-as-a-service-raas/suggestion-validation-methodology/ai-generated-diet-suggestion-for-medical-conditions/
I was diagnosed with fibro 20 years ago. Despite learning better management strategies over the years the underlying disease state got progressively worse, particularly my stress tolerance (had too many nervous breakdowns to keep count), depression and energy. Two years ago, at my worst, I filed for disability.
Six months ago I started working with a new naturopath. We did some GI testing which showed low levels of secretory IgA, very high steatocrit (indicating fat malabsorption) and opportunistic bacteria alongside very low lactobacillus and bifidobacterium species. I also had very low tissue mineral levels.
We started supplementing with probiotics, digestive enzymes, taurine, minerals and tyrosine for my mood. Within weeks I was feeling better. Within months I was pushing myself incrementally at the gym and increasing my anaerobic tolerance. My depression and lack of motivation vanished. Now, 8 months later I sleep less, have good clean energy everyday, require very little daytime rest and have only had 1 bout of PEM after a multi-hour walk. For the first time I can remember I have isolated acute pain (in my knee) which is not triggering a full body pain flare for weeks. Last week I returned to the gym after a 2 months break and had zero after effects. Not even the typical lactic acid soreness the following day which really blew my mind.
I still feel sensitive to some inflammatory responses and so I continue to implement a plethora of healthy lifestyle strategies including a low-carb, low-inflammation diet (I am reactive hypoglycaemic and very allergic to nightshades).
My mantra for the past 6 months has been ‘all roads lead to leaky gut’. My current hypothesis is that my 20+ years of deteriorating health was triggered by a H.Pylori infection that I got in my teens but that wasn’t diagnosed and treated until 4 years ago. The long term impacts of this infection were maldigestion, malabsorption, nutrient deficiencies, weakened immunity, chronic infections, intestinal permeability and probably a leaky blood brain barrier. (On top of all that for a good decade I lived a high excitement/stress life, drank way too much alcohol, smoked cigarettes, regularly stayed up all night partying, was addicted to sugar and had genetic vitamin D and A deficiencies!)
I have spent the past decade fully dedicated to healing and like many have spent tens of thousands of dollars trying to get well. It is with great relief that I feel as good as I do right now. If my hypothesis is correct then I hope that tending to my gut health and microbiome will result in long term remission. However, I know that relapse is possible so I won’t declare myself fully recovered until I’ve got through a year or two symptoms free and have dealt with external stressors.
Note:
I got covid twice last year (unvaccinated). I felt fantastic after the first round (suspected Delta from which I got very ill in the inflammation stage) but after the second infection (suspected Omicron) I was much slower to recover and had a worsening of my orthostatic intolerance as well as tachycardia for many weeks. My naturopaths was quite surprised I got through them both given my underlying state of health but I did go hard on both infections with the FLCCC protocol.
I also worry about the use of antibiotics. Individuals are not becoming immune…it doesn’t wok like that, the whole human race is. Amoxycillin is already next to useless.
Is it planned that they will be needed more than once to hlp ME? This will surely ontribute to wholesale antibiotic immunity.And when that happens, a viral pandemic will seem like a picnic. Bacterial infection pandemics will wipe out half the planet like bubonic plague did.
I worry that individuals will follow suit en masse before anything is tested and proven.
I think you want to use low doses.
This is key.
I am confused: how will you know what is having what effect?
Since you are trying so much more than just the antibiotic. Or that it is the combination of a few of the things, etc. Wouldn’t you want to reduce your variables?
Also,
Why not just do a low-dose course of one anti-biotic for however long your body shows you to?
And then try another and see how you respond etc?
The anti-biotic alone might do what is needed.
Good questions.
Our number one goal with this study is just to prove that we can recreate a sudden remission event and we will measure as much as possible to try to tease out what might have happened.
We’re doing a ton of tests: https://remissionbiome.org/planned-protocol/
Like you mentioned, the strategy here is different than what people normally do (isolating variables), because we do think it might take multiple interventions at the same time.
If that’s the case, you can imagine that if we tried one intervention at a time and not get a remission, we could come out thinking that nothing had worked and not having any data from testing to start narrowing down hypotheses.
Another key is that we plan to have other studies in the future where we’ll have fewer variables, but they will be based on what we learn from this first experiment.
There you go! Combination therapies are going to be critical I think. So does Amy Proal and Tim Heinrich (Proal blog after this one)
I’m long COVID/autoimmune) how do I join this group
I have a question: what makes the gut relaxing? Serotonine? Are there any patiënts who have a tight or hard feeling after a meal around the gut which give you the feeling you can not breathe? anyone?
Toxic liver, fatty liver, gallstones, lack of the right digestive enzymes, wrong gut flora, backed up gut, food allergies, lack of enough magnesium, gmo and refined factory foods, hiatal hernia, imbalanced eating, lack of the right exercises that assist gut function: Any combo of these modern distressors could be causing bloating and a stuck feeling. These can be fixed with the care of a good naturopathic or Chinese doctor. Then research from there.
Hi can you comment on which plasmalogens are used in this study and which probiotics are taken afterwards?
My train has left the station but I understood most of what I read. I’m 81 years old and came down with CFS when I was 32 and I’ve struggled all my life with this ugly disease. It
has stolen my life. I’ve had remissions but then had serious flare ups. I’m now 81 in bed
with with a major flare up that has lasted many months. I know it’s too late for me but even if no one reads this, it makes me feel better. As you know this is a “lonely” illness.
I will continue to read about all your difficult progress and I wish you the very best with your health and research. I believe I caught this at Incline Village, Nevada after a vacation there in 1984/85. Thank you for letting me vent. My very best to you all.
Very sincerely yours,
Kathleen Riley
I admire your bravery!
I don’t want to imagine what it’s like to have to endure this illness for so long 😔❤️
It worked for me! Nothing else did.
So why did the 2 girls split up? Radio silence? They both think they are experts and one of them offers crazy advice like injecting yourself with peptides …. Im glad i never donated to these women just to watch them travel the world with what seems to be remission or a very mild form of ME…..
Next time- donate to OMF. Or actual “experts”