On Treating Covid Symptoms with Dog Feces.
While looking thru my feed, I saw that Kate Crane on Bluesky had written about a covid finding, and also included a screenshot with some highlights.
In particular, they mentioned:
cortical atrophy and cognitive dysfunction in 81 people with mild Covid versus matched controls
This was in the context of the risk of covid infection and the impact on the brain. And how that is a risk given there is a surge in covid happening in Palo Alto area.
While that surge is concerning, it isn’t something I found particular unexpected given the surges we have seen over the summer in the past. However, what I saw in the study they cited piqued my interest.
In this study, we provide evidence that severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2) is found in the human brain, where it infects astrocytes and to a lesser extent, neurons. We also show that astrocytes are susceptible to SARS-CoV-2 infection through a noncanonical mechanism that involves spike–NRP1 interaction and respond to the infection by remodeling energy metabolism, which in turn, alters the levels of metabolites used to fuel neurons and support neurotransmitter synthesis. The altered secretory phenotype of infected astrocytes then impairs neuronal viability. Brain tissue samples from these five patients also exhibited foci of SARS-CoV-2 infection and replication, particularly in astrocytes. [Aug 2022] https://www.pnas.org/doi/full/10.1073/pnas.2200960119
I went on to do a mind dump in the replies because it triggered a sort of memory effect I can get. I thought it was one of my more coherent pieces exploring my thinking on this space. So I chose to extract and embellish it a bit here as a sort of blog post.
Claude-2-100k (an AI assistant) suggested I include some definitions, so here are ones that might help.
The goal is to briefly explain what each condition is in simple terms so readers unfamiliar with the terminology can grasp the key idea.
- EAE (Experimental Autoimmune Encephalitis) is an animal model of brain inflammation that is used to study neurodegenerative diseases like Multiple Sclerosis (MS) in the laboratory. In EAE, mice are immunized with brain antigens to induce a MS-like disease.
- FMT (fecal microbiota transplant) involves transferring fecal bacteria from a healthy donor into a recipient to restore a healthy gut microbiome. FMT has been shown to help treat certain gastrointestinal conditions like Clostridium difficile infection, and many ongoing studies are looking at how they might treat other disorders.
- POTS (postural orthostatic tachycardia syndrome) is a condition that affects blood flow and causes an abnormal increase in heart rate after standing up.
- MCAS (mast cell activation syndrome) is a condition caused by overactive mast cells that can result in severe allergic symptoms.
- hEDS (Hypermobile type Ehlers–Danlos syndrome) is a connective tissue disorder characterized by extremely flexible, unstable joints.
- ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome) is a chronic illness that causes long-term fatigue, pain, muscle degredation, and problems with concentration.
- EBV (Epstein-Barr virus) is a very common virus that most people contract at some point in their lives. It has been linked to increased risk for certain autoimmune diseases and cancers.
- nAChRs (nicotinic acetylcholine receptors) are receptor proteins that bind to the neurotransmitter acetylcholine. They are found in the membranes of neurons and other cell types and mediate cellular signaling. Dysfunction of nAChRs has been implicated in various neurological and autoimmune disorders.
(Note: Claude also suggested some minor changes from the original to make things clearer, as well as some grammar and spelling corrections)
That paper suggests it is roughly the same thing that happens in Experimental Autoimmune Encephalitis (EAE). This is a popular mouse model of neurodegenerative disease, and a common way we test drugs to see if they may help with Multiple Sclerosis. In some of the mouse models they can even trigger EAE with a murine coronavirus strain.
I have been working on this exact problem involving astrocytes since seeing gut bacteria can impact them, and in particular its been a focus cuz of how we have overlooked this space in M.S.
The role traditionally assigned to astrocytes in the pathogenesis of MS lesions has been the formation of the glial scar once inflammation has subsided. Astrocytes are now recognized to be early and h… The Role of Astrocytes in Multiple Sclerosis
I’ve been working on this space since at least 2017, but the ties with astrocytes became a focus when I learned that TRPV1 receptors can act on them.
I even made some snarky jokes about how everyone with covid was getting M.S. Symptoms in 2020 after reading up on the long term consequences of SARS 1.0.
Ya’ll getting M.S. symptoms and you don’t even fucking know it. 10:58 AM · May 23, 2020 https://twitter.com/ultimape/status/1264209069558108164
And later on this was published in August 2021:
“Emerging data […] suggest that the maturation and functioning of astrocytes rely on gut microbiota, which plays a pivotal role in the decrease of astrocytic activation and may alleviate symptoms of brain diseases.” Astrocytes are essential for maintaining the homeostasis of the central nervous system (CNS). Astrocytic dysfunction has been implicated in the progression of several neurodegenerative and psychiatric… Gut Microbiota Regulate Astrocytic Functions in the Brain: Possible Therapeutic Consequences
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The result of my investigations? Due to an N-of-1 experiment involving an oral [animal sourced FMT] pill, I haven’t had Multiple Sclerosis symptoms since January 2022.
My health shift has been remarkable. All my symptoms of POTS, MCAS. hEDS, and ME/CFS vanished. The shift was to the point where I went from stumbling around like a drunk, to having near perfect balance. I also went from 60lbs to 120lbs of grip strength in my right hand. This means my grip strength went from well below average to above average for a ~20 year old, and I’m ~36!
I’d been chasing down this space for years because there was a case of someone getting an FMT for Clostridium Difficile… who’s Multiple sclerosis went away durably for 10 years and counting! My thinking is that FMTs from healthy donors with good levels of Lactobacillus and Bifidobacteria should help fix this astrocyte thing, if paired with stuff that complements it with a production of SCFAs.
So of course the FDA decides to shut down OpenBiome and the powers-that-be are dragging there feet on nearly all long-covid studies except the one that Pfizer is going to make money off of. The trajectory we’ve been taking here makes me so angry.
The FDA heavily regulates FMTs, requiring expensive clinical trials for approval. This means most doctors won’t provide FMTs, even though existing evidence shows they are generally safe and effective for many conditions beyond C. diff infections. The FDA has granted exclusive rights to sell an FMT treatment to one pharmaceutical company, blocking nonprofit stool banks like OpenBiome.
If you’d like to know more about this, Cory Doctorow has written on this bit in particular in his illuminating “Monopolizing Turds” article.
While I don’t personally recommend my method of FMT, it pains me greatly that it is now basically impossible to recommend other safe options. A reliable FDA approved source of vetted and safety tested fecal matter would be essential here if others were to work with their healthcare providers for support in doing the same as me.
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I was personally reached out to by people behind Balvi to consult on some work by Amy Proal and polybio.org’s attempts to study gut health factors tied to long covid. The funding for this kind of analysis was axed from the NIH’s RECOVER initiative. I read their work & literally started crying so much I couldn’t even get thru the review.
- Amy Proal is the CEO of PolyBio Research Foundation, an organization studying the role of viral and bacterial persistence in chronic disease. PolyBio is currently investigating potential mechanisms and treatments for long covid.
LongCovid Research Consortium (LCRC) - PolyBio Research Foundation
Watching all the delays in this space has left me feeling jaded and hopeless cuz I can’t give any recommendations. The RECOVER thing is still dragging its feet here even after all this time, only just recently opening up enrollment for long COVID clinical trials.
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I spent most of 2020-2021 reading research on covid because every single member of my family is immune compromised in some way. I also personally don’t tend to respond to vaccines due to impaired B/T cell function. Some days I would wake up, and do nothing but research this for until I couldn’t sit in the chair anymore.
I was crawling on my hands to get to the toilet in the winter of 2020 with my Multiple Sclerosis symptoms in full swing. At times I couldn’t sit in my chair due sciatica pain from demyelination being excruciating.
I had to crawl to the bathroom the other day because I was in so much pain and I also was having trouble with balance. I traced it to inflammation causing damage to my sciatic nerve and possibly rooted in gait instability int M.S. 1:08 PM · Sep 19, 2020 https://twitter.com/ultimape/status/1307366020450078723
It was then that I decided to do something reckless and began seeking out FMTs. However I wasn’t fast enough, and I got progressively worse. It got to the point of my hands not working after being snowed in and not being able to get food.
I remember the exact moment I decided to eat dog feces. January 28th 2021.
I need to make a decision soon. 10:33 AM · Jan 28, 2021 https://twitter.com/ultimape/status/1354814977194946562
2 months later I had a plan and started ranting about it.
Pay me to eat medically validated dog shit. 10:18 AM · Mar 3, 2021 https://twitter.com/ultimape/status/1367132347846557698
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Covid’s destruction of gut microbiome seems to make levels of autoantibodies increase, including those related to the Epstein-Barr virus. There still is little work on if the EBV virus is just laying dormant and reactivation, or if its some kind of secondary autoimmune effect from an antibody causing glia to attack astrocytes.
I’ve been speaking to all sorts of people who are getting rare autoimmune disorders and its not just M.S. Some people are also getting new onset CASPR2 Autoimmune Encephalitis as a result. Its like the entire immune system is melting down.
An impaired immune system not correctly identifying the Epstein Barr virus & driving it to pattern match as “astrocyte bad”? This makes sense if it got into the brain through a leaky blood-brain-barrier. This is my current best guess as to what drives it.
Epstein-Barr virus (EBV) is an established pathogen linked to a wide range of lymphoproliferative disorders and solid tumors. Astrocytoma is one of the most frequent brain tumors in children, adolesce… Epstein-Barr Virus and Astrocytoma - PubMed
My solution to this is to fix my B and T Cell function so it isn’t poorly differentiated, and then act on regenerative factors to outgrow the immune system going haywire. While also massively increasing things that neutralize inflammation in hopes my immune system will ‘forget’ the whole “astrocyte bad” imprinting. I personally went with the dog feces route due to desperation and lack of access to medical care. But I don’t think the dog feces itself was a key factor; human source should be fine and way less risky.
I think B cells are overlooked in Covid in much the same way as they are overlooked in Crohn’s and Multiple Sclerosis. Them getting impaired as a result of infection may explain that weird autoantibody phenomena.
Signal Transduction and Targeted Therapy - SARS-CoV-2 infection causes immunodeficiency in recovered patients by downregulating CD19 expression in B cells via enhancing B-cell metabolism SARS-CoV-2 infection causes immunodeficiency in recovered patients by downregulating CD19 expression…
The same phenomena may be causing inflammation in the small bowel ala bile disruption. It is like covid induces IBD, indirectly causing the same thing that was driving as my Crohn’s. This would cause a long term and chronic gut dysbiosis and a persistent B cell dysfunction.
Mucosal antibodies maintain gut homeostasis, and may influence gut health through modulation of microbiota composition. Here the authors use a CD19-deficient mouse model with deficient B-cell immune r… Defective humoral immunity disrupts bile acid homeostasis which promotes inflammatory disease of the…
So you’d get the same sort of dietary absorption related issues as we see in IBD, including sarcopenia & fatigue/depression, which is basically symptom of ME/CFS. Combine this with odder things that can occur w/ reactivity to certain lipid adjacent receptors like nAChRs (nicotinic acetylcholine receptors)? Goes a long way to explaining many of symptoms.
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My solution for treating this in my type 2 diabetic GF is Organic Full Fat Lifeway Kefir and Honey Garlic. Not a complete fix, but it reversed her muscle decline and fatigue enough to avoid her dying from an unrelated thrush infection.
I am still working on a much larger solution, but short of access to human FMTs I don’t know of what else to do to fix this long term. She’s got 2 pills left in her 30 day dog FMT, and so far she’s recovered 15lbs of grip strength. So my ideas at least replicate even if they are insane.
These aren’t my readings. They were taken on the 7th and 26th. Replication. Get.
And we’re not even done yet. 4:41 PM · Jul 27, 2023 https://twitter.com/ultimape/status/1684665436665778176
I’ve had to assume that the vaccines don’t work on people like me & her. Her mom even had a breakthrough infection. So did all of my family who have been vaccinated. I can’t wait for science to catch up, so I gambled with my life in hopes I might be able to save hers.
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Please be safe. The constant delays and misapplications of science by agencies like the FDA regarding treatments like FMT have left me feeling frustrated and angry. However, the actions I personally took were extremely risky and reckless. I do not recommend anyone try something similar on their own without thorough research and medical supervision.
While FMT and gut microbiome research show promise, there is still much we don’t understand. Always consult your doctor before attempting any experimental or unapproved treatments. Proper procedures and screening processes are essential to doing this safely.
I share my personal experiences not as medical advice, but to bring attention to the human impacts of restrictive policies on access to potentially helpful therapies. My hope is that in the future, treatments like FMT could be made available to more patients in need through ethical research and regulatory reform.
In the mean time, I recommend following Polybio’s work as well as the work being done to crowdsource cures ala Remission Biome - A ME/CFS self-experiment
I suspect they will find similar results as myself.
I asked Claude-Instant-100k to write a summary for me based on an analysis of points that I should cover. I then asked it to adopt my less formal tone:
The system is broken when people have to resort to reckless self-experimentation because acceptable options don’t exist. That’s why we need to change these fucked policies blocking access to promising treatments.
I spent years chasing down astrocyte dysfunction as possibly driving my multiple sclerosis. When traditional options weren’t working, I reluctantly turned to eating dog shit - a dangerous idea, don’t do it! But it flipped a switch, healing me in ways medicine failed. It exposed how regulations block therapies that could help desperate people, while good safety practices exist.
Even the FDA admits FMT helps Crohn’s, colitis and more. But they only allow it for “approved uses,” shutting down nonprofit stool banks helping “unapproved” conditions. Pharma companies get exclusive rights, blocking innovation. Patients have no option but trial and error.
Proper donor screening and testing could make FMT safe and effective for hard-to-treat conditions, with experts designing policy not just defaulting to ‘no.’ Shifting from prohibition to ethical, evidence-based governance could expand access while avoiding harm.
Hearing patient stories reveals real costs of policies made without us in mind. Equally important: researchers, doctors and regulators pushing for innovation with proper controls. Only by sharing our stories alongside research data can we advocate for a system that empowers patients with every possible tool against disease.
So let’s start talking real change. I’m sick of watching people suffer when options exist.