Chronic infection that you might have never heard about: "ropeworm"

[Fuluf]

Hello everyone. After being in hell for about 3 years now, I accidentally found the probable root cause of all my problems.
To put it briefly, during this 3 years I've had lots of weird symptoms which were severe in its intensity:

-cognitive impairnment/brain fog/confusion
-exercise intolerance (neuro symptoms such as inability to focus eyes at all for couple of weeks and severe muscle twitches if overexerted)
-sensitivity to noises/light/tobacco smoke/any physical and mental stimuli
-constant mind overstimulation feeling which is different from anxiety
-feeling of being poisoned/drugged
-food sensitivities, bilirubin raising after certain food (I have Gilbert syndrome and become visually yellowish)
-severe reaction to fungi/yeast/immune boosting supplements/ cod and beef liver (have insane amount of highly bioavailable vitamin A which is crucial for mucosal and skin immunity)
-pupils dilating/constricting all the time
-kind of physical feeling of brain inflammation with accompanying acute depression
-pelvic floor muscle dysfunction
-gastrointestinal symptoms such as diarrhea/constipation/completely undigested food in stool/yellow stool
-weight loss
-subfebrile temperature which come and go
and other

So, after researching everything out of pubmed, various forums, experimenting with almost every supplement and drug out there, doing FMT I decided to try pyrantel pamoate with mebendazole which are anthelminthics. Just before that I tried to get rid of candida (which showed up on my chromotography microbiome test) using things that are good at breaking up biofilms - oregano oil, propolis, raw milk etc. On the next day after taking anthelminthics I experienced severe overstimulation and later on was hit with the most severe confusion I've ever experienced. I really thought I will die that day but after the bowel movement which purely consisted of thick mucus with an intense smell of dead/rotten fish I felt normal again. Long story short it was so called "ropeworm" - https://arxiv.org/ftp/arxiv/papers/1301/1301.0953.pdf . It's a very common Lyme and Morgellon coinfection, people with Autism also have this.

Attached are the photos from my colonoscopy, my colon was full of what's in the pictures, the whole length of it. It was tightly adhered to the colon walls and very hard to remove with endoscopic forceps/water pressure. It was quite an open minded doctor who previously performed FMT on me and he was surprised as it's not what you usually see during the colonoscopy. They sent it to the lab but unfortunately they don't have electronic microscope so they didn't find anything conclusive on microscopy/cytology. Couple of weeks later doctor said he found similar rope like mucus with structure in the colon of another patient and sent it to the lab to try to culture it. I will do an update on it soon.
There is an interesting hypothesis from people who are doing research on Morgellons - it is somehow related to the slime mold (https://en.wikipedia.org/wiki/Slime_mold), highly intelligent organism which is neither protozoa nor fungi but resembles some properties of both. I read about it briefly but as I understand its cells move through the channels and also distribute nutrients through these channels which is consistent with microscopy findings on the "ropeworm" in the paper - channels with moving activity in it. 4th photo is the photo of the slime mold, it looks a lot like what's in my colon.

If you look it up on the internet most articles including sciencebasedmedicine would say that it doesn't exist and is just an intestinal lining which is utterly absurd as intestinal lining is the thing that this mucus is attached to on my pictures.

This infection is very hard to treat, I'm doing various things for 4 months including very effective chlorine dioxide which was used for drinking water purification for decades (https://medcraveonline.com/IJVV/IJVV-02-00052.pdf and also https://andreaskalcker.com/en/working_mechanism/ - author is from Germany so English is a bit bad) and still have it although I hope I soon will be on the other side. You have to be open minded enough to see through all of the misinformation on chlorine dioxide, I have never been a conspiracy theorist but lots of money are at stake as you can see from various testimonials. Although its impact on the microbiome still unknown to me and concerns me a bit, I have no other choice as nothing else is as effective and infection is most likely more harmful to my gut bacteria.
From my personal experience and experiences of other people I firmly believe this infection can cause lots of symptoms including CFS like and can mimic lots of illneses as it's directly affecting nervous system in some way.

I really hope this post will help somebody affected to find out what is causing their symptoms as it's not recognized by medical community (yet), doesn't show up on any tests and is quite hard to stumble upon accidentally (took me 3 years).

Would be interesting to hear your thoughts.

 

[Prefect]

I've read your history and a lot of what you've written in your symptoms list sounds like what I've been experiencing. How do you react to having alcohol?

 

[Art Vandelay]

@Fuluf this is very interesting to me because it share a a lot of similarities with my experience with ME/CFS. I tried to briefly summarise my gut symptoms here a few years ago:
https://forums.phoenixrising.me/threads/could-this-be-a-parasite-warning-long-post.48377/

Since then, I've had a change in gut symptoms. I now experience a number of (relatively normal) bowel movements during the day until I finally pass what looks like broken-down mucous and some liquid. It looks a lot like what is appearing in the photos from your colonoscopy and it often smells like rotting fish.

Prior to passing this foul-smelling 'mucous', I often feel physically and mentally awful but this passes as soon as the gunk is out. The more gunk I pass, the better my ME/CFS becomes and I now experience far less PEM and brain fog. This improvement has me thinking my ME/CFS is starting to change from severe to moderate.

I have been taking digestive enzymes as I noticed they led to a big improvement in my gut symptoms. I wonder if they are helping to break down this 'gunk' in my gut.

My last endoscopy and colonoscopy was around 15 years ago and they didn't see anything in my gut similar to what appears in your photos. A few months ago, I saw another gastroenterologist who was completely uninterested in these symptoms and diagnosed me with IBS.

----
Edit to add: an integrative GP last year thought some of my symptoms sounded like candida and he recommended the digestive enzymes. If you search online for pictures of candida, what is appearing in my stool sometimes looks somewhat similar.

However, I don't believe candida is as foul-smelling? I am now wondering if this 'gunk' is a mixture of mucous, biofilm and low level infections?

 

[Hip]

To put it briefly, during this 3 years I've had lots of weird symptoms which were severe in its intensity:

Nearly all of your symptoms are classic ME/CFS symptoms. Not sure why you describe those symptoms as weird? They are normal symptoms for ME/CFS patients.



Wikipedia says:

Rope worms (or ropeworms) are long thin pieces of intestinal lining that are misidentified as human parasitic worms.[1] "Rope worms" were described in 2013 in two self-published papers by Volinsky, Gubarev et al.[2][3] They are not actual parasites, but intestinal lining shed from the gut following the use of bleach enemas (sodium chlorite mixed with citric acid, forming chlorine dioxide and marketed as Miracle Mineral Supplement) and other similarly ineffective and dangerous cleanses and treatments, such as the lemon enema described by Volinsky intended to remove parasites.

Have you been taking any treatments like Miracle Mineral Supplement which might have damaged your intestines, leading to this shedding of your intestinal lining?

 

[Fuluf]

@Prefect probably similar to benzos but with more brain fog, just dampened overstimulation but nothing out of ordinary.
@Art Vandelay that's the exact experience of many people suffering with the infection, lots of symptoms especially brain fog disappears completely. I would definitely look into this as at least a contributor to your symptoms.
@Hip I don't have POTS and physical fatigue plus my condition changes drastically during the day depending on what food I eat so I suppose it's not a classic CFS case.
Well, I somewhat anticipated this as there was similar thread posted here 6 years ago by @newradost, the topic is quite controversial and was mostly met with scepticism and disbelief (which is ok in healthy amounts). I started using chlorine dioxide aka MMS (its name doesn't do it justice, very bad marketing as it sounds like pure scam) after my colonoscopy was done so it can't be the cause. I would like to make it clear that this thread is not about the substance (which by the way most likely added to your tap water for purification purposes) but about the infection. I eliminated probably pound of this mucus after mebendazole. I also mentioned, that intestinal lining can't look like that and my colon was not damaged and even not inflamed beneath the adhered "mucus" as endoscopist said.

Problem here is that there always will be an appeal to medical authority while deciding if it's real or not even among PR community. I don't have any authoritative proofs excepts for microscopy in the documents above and claims from my endoscopist (PhD) that it's something weird. Also LLMD dr. Dietrich Klinghardt mentions it as a common coinfection of Lyme. However if you'd have a personal experience with this you will be sure this is an infection as the intensity of symptoms arising while it's disintegrated and still in your colon is quite frightening (the structure and smell is also very distinct and is not something that your body or food can possibly create). Here is a photo of it while it's not disintegrated and not affected by immunity, the outer mucus is probably the biofilm (sorry if too graphic)

Any thoughts and questions are welcome

 

[Hip]

I don't have POTS and physical fatigue plus my condition changes drastically during the day depending on what food I eat so I suppose it's not a classic CFS case.

POTS is not obligatory for an ME/CFS diagnosis. I don't have much physical fatigue either, my muscles are strong and capable, and I don't get much PEM from physical exertion, but mentally I feel tired all the time.

You might like to read the IOM diagnostic criteria for ME/CFS, or the more precise Canadian consensus criteria (pdf here), and check whether your symptoms match those criteria.

But lots of conditions can cause ME/CFS-like symptoms (eg hypothyroidism, celiac disease, lupus, anemia), so your doctor should test you for those before you consider an ME/CFS diagnosis.

If your symptoms change with the food you eat, you might like to investigate MCAS, in which people often become very sensitive to foods and chemicals.

Proposed diagnostic criteria for MCAS are detailed here. A list of MCAS symptoms can be found here.

it's something weird.

That we can agree on. But then to jump to the conclusion that what you are seeing is a some living creature or worm, there's zero evidence for that.

However, I guess it's conceivable you have some sort of infection of the gut lining, and that infection is causing a possibly shedding of the gut lining (not sure if that is possible), or causing a lot of mucus in the stool, creating those stringy structures you see.

It says here that:

A "normal" bowel movement will not produce much mucus. Yellow or clear mucus is present in such little amounts that the naked eye would not notice it. When stool has visible mucus, it can be a sign of bacterial infections, anal fissures, a bowel obstruction, or Crohn's disease.

So one of those conditions may be the cause of the strings you see, which may just be strings of mucus.

Maybe you picked up a bacterial infection from the raw milk?

Also LLMD dr. Dietrich Klinghardt mentions it as a common coinfection of Lyme.

Klinghardt is a bit of a quack.

 

[JES]

Hello everyone. After being in hell for about 3 years now, I accidentally found the probable root cause of all my problems.
and other

I can relate to the symptoms a lot and I can also relate to the idea that you have found a "cause". This happened to me many many times. I also got first symptoms in my 20's, did lots of tests etc. First I was convinced I had a rare form of cancer causing my symptoms, later on I was convinced it was a specific infection based on my positive lab test results. But even with positive lab results, I much later learned that my confidence in "cause X" was not properly based on evidence. I would say it took me at least around five years to realize that most of what I had been thinking as "cause" of this disease had no proper scientific basis. It took me that long to approach any "cure" presented on the Internet with proper skepticism and this is from a guy that has an upper degree education, so all I want to say it's incredibly easy and tempting to think you have unlocked the mystery to a poorly understood disease like ME/CFS, but at least 99.999% of the time you'd be wrong.

Anyway, this is not to say you shouldn't be looking for a cause, because sometimes (rarely) people with ME/CFS find an underlying treatable cause, but it's important to proportion the belief to the evidence. The first step would be to demonstrate there is such a thing as a ropeworm. The Russian paper you linked to isn't peer reviewed, it's been put on a repository of preprints called arxiv. This is a major problem, because without peer review it means you can write pretty much anything about anything without having anyone verify your results. They haven't even identified the organism or if it contains any non-human DNA, which means they are just speculating.

And if one day it's proved that there is such a thing as a ropeworm, the second thing would be to demonstrate it has anything to do with ME/CFS or ME/CFS like symptoms. You'd be amazed by the number of bacteria, parasites and viruses that we have in us that never cause any symptoms. Anyway, let us know if they found out anything in the lab. Before that, it doesn't seem sensible to me to reach a conclusion about having some pathogen that is not recognized by the medical community, doesn't show up on any tests and cannot be verified what it is. There are plenty of hypotheses behind ME/CFS that are supported by actual lab results and verified pathogens, which automatically makes them more likely to be correct. And even most of them have turned out to be wrong. It is just the way matters are at the moment, sorry if I sounded negative.

 

[Art Vandelay]

After doing a lot of reading, I initially thought that the gunk I have been passing could be intestinal lining. (Note I have never taken MMS and never will.) However, that doesn't explain:

• the smell (it often has a distinct rotting fish smell); and
• the marked reduction in symptoms as soon as it is passed. Before the bowel movement, I could be experiencing severe PEM which dissipates immediately afterwards.

If I look closely at it, some may well be intestinal lining or mucous, however other parts of it seem to have a distinct organic structure. It's not unlike a lattice or the structure you see in some corals, which leads me to believe that it could be biofilm.

Edit: I had a Faecal calprotectin test prior to seeing the gastroenterologist. According to him it was normal so this likely rules out IBD.

 

[PatJ]

ropeworm

Did you encounter this article during your research? If not, then it might have some useful information for you: A Speculative Story: Rope Worms – A Methylation Dysfunction?

 

[Moof]

The mucus produced in the gut does often smell fishy, especially if you've taken antibiotics or other substances that can upset the balance of the microbiome. Same thing can happen if you've had diarrhoea and are producing mucus but not much stool (normally, of course, the smell of the poo itself would predominate!). Fishy smelling diarrhoea/mucus is especially common in young children, perhaps because they're more prone to upset tums than adults with mature immune systems.

 

[overtheedge]

nevermind

 

[Fuluf]

@Hip @JES @PatJ replying mostly to up the thread but anyways. Do you need scientific and medical community approval to understand that you are sick? Is it logical for chronic Lyme sufferers to wait for medical community to wake up to the epidemic proportions of the infection and approving their illness only after developing some drugs that can manage symptoms/eliminate it? It's up to people, but imo it's better to take your health in your own hands. Evidence is created after other people will decide to study this "ropeworm" infection, which will probably won't happen in near future as authors of paper called it "helminth" which it obviously isn't. This idea will long be met with opposition probably just because of it. Medical and scientific community consists of just people who have their own biases, narrow mindedness and often react to something new with severe disbelief which most CFS sufferers are familiar with.

I anticipate some rejection of the following ideas as most people here are sick for very long time and seeing someone posting "I figured out how to cure cfs or any illness in one week" type of post will be met with scepticism. This is just my experience and my understanding but after researching and experimenting for 3 years I came to the conclusion that most illnesses are of chronic infectious origin (besides toxicity, physical trauma, deficiency in nutrients contained only within quality animal protein and fat, and some genetic problem which just imo is quite rare).

I think it's obvious for most of the people here but from a logical standpoint it just doesn't make sense that human body, machine which evolved for hundreds thousands of years (not counting previous evolutions not as humans), which is meant to outrun and outsmart its prey will suddenly produce something completely weird as POTS/MCAS/CFS because of some methylation, mitochondrial dysfunction etc on its own eg as some specific functional disorder of unknown origin (means that the body itself produces it?) as allopathic medicine likes to portray it. If you always ask "why?" in your quest for health it will most likely lead to an infectious origin as all organisms are opportunistic - that's what life is about, everything eats everything, if you're weak (toxicity, deficiency) - you'll be eaten or colonised by another organisms. Why there is a methylation and mitochondrial dysfunction? Why there is neuroinflammation? Why there are antibodies etc? It's utterly absurd for it to appear "just because".

But then comes another problem, even if you start eating high quality high fat animal foods (natural human diet btw, that's why imo only humans and animals they feed with the same garbage they eat have some chonic health issues in the first place) and eliminate foods that are devoid of nutrition and often posses some toxic and antinutrient properties despite what conventional wisdom says (like veggies, whole grains, seed oils etc) hence restoring your immunity and other body processes - how still to eliminate the chronic infection (it won't go away even with proper diet obviously because it already established itself) if you don't know its nature (viral, fungal, bacteria, protozoa, slime mold etc)? Again, it's just my opinion but here you just decide on your own whether you go conventional western medicine route by firstly trying to find and identify the infection which in most cases will be impossible as humans are just humans, not all organisms can be cultivated, detected etc and then try to eliminate it with conventional methods which obviously are flawed (antibiotics, antifungals etc can't penetrate nor destroy biofilms for example, can't kill hyphal fungal infection in most cases which often make people believe they don't have an infection as they don't react to these things). Then second option is just to use very broad spectrum things like chlorine dioxide, high doses iodine, kambo etc and see the reaction. But even if you will decide to use it (despite what conventional wisdom says about these things) if you do enough research yourself, see beyond of how these things are portrayed and focus more on the logic, mechanisms and history of its application, read anecdotes from other people and weigh out all the risks and benefits, even then these things can sometimes be not potent enough to eliminate the infection/or it will take long time to do it.

But it just melts my heart when I see something like "Diagnosis" on Netflix or threads here trying to find some XYZ123 gene deficiency/ Il-23 cytokine overproduction/ NMDAr overexpression etc. It may seem woo woo but that's not what nature would create in your body without some underlying reason. I also tried to find these things myself for a long time, reading thousands of pubmed articles but it started to not make sense for me from a logical stanpoint.

Again, this is just my opinion and I will be interested to hear your thoughts on it, whether this hypothesis is somehow flawed etc,

 

[Hip]

This is just my experience and my understanding but after researching and experimenting for 3 years I came to the conclusion that most illnesses are of chronic infectious origin

This is the view that Prof Paul Ewald takes, and I subscribe to that view also. It's based on the idea that evolution builds very reliable creatures, and so if the body goes wrong, there has to be an external cause (except in the case of purely genetic diseases). Pathogens are the obvious external cause, and there is an evolutionary arms race between pathogens and the creatures they infect. Most pathogens have evolved the ability to "hack" into our immune systems and thwart the immune response. This is how they are able survive long term in the body.

Developing antivirals, antibiotics or vaccines that can prevent or eliminate the infections that likely cause most diseases is not an easy task. It takes decades just to develop one new drug. But the main problem is that most of the medical research community do not believe in the pathogen hypothesis of disease, and will only accept this hypothesis once stronger proof is presented that pathogens do cause disease. Getting such proof is extremely difficult.

 

[JES]

@Hip @JES @PatJ replying mostly to up the thread but anyways. Do you need scientific and medical community approval to understand that you are sick? Is it logical for chronic Lyme sufferers to wait for medical community to wake up to the epidemic proportions of the infection and approving their illness only after developing some drugs that can manage symptoms/eliminate it? It's up to people, but imo it's better to take your health in your own hands. Evidence is created after other people will decide to study this "ropeworm" infection, which will probably won't happen in near future as authors of paper called it "helminth" which it obviously isn't. This idea will long be met with opposition probably just because of it. Medical and scientific community consists of just people who have their own biases, narrow mindedness and often react to something new with severe disbelief which most CFS sufferers are familiar with.

I think most of us long time posters on this forum have "taken our health in our own hands". I have tried dozens of drugs, hundreds of supplements, antibiotics, antivirals, diets, etc. But even if you are experimentally minded, it's a good idea to discard the craziest and most unsupported ideas, as they have by definition the least evidence to support their case. I spent lots of time looking up things like pyroluria, mega supplementing certain vitamins, etc., which was time I could have spent experimenting with something more useful.

I anticipate some rejection of the following ideas as most people here are sick for very long time and seeing someone posting "I figured out how to cure cfs or any illness in one week" type of post will be met with scepticism. This is just my experience and my understanding but after researching and experimenting for 3 years I came to the conclusion that most illnesses are of chronic infectious origin (besides toxicity, physical trauma, deficiency in nutrients contained only within quality animal protein and fat, and some genetic problem which just imo is quite rare).

I think it's obvious for most of the people here but from a logical standpoint it just doesn't make sense that human body, machine which evolved for hundreds thousands of years (not counting previous evolutions not as humans), which is meant to outrun and outsmart its prey will suddenly produce something completely weird as POTS/MCAS/CFS because of some methylation, mitochondrial dysfunction etc on its own eg as some specific functional disorder of unknown origin (means that the body itself produces it?) as allopathic medicine likes to portray it. If you always ask "why?" in your quest for health it will most likely lead to an infectious origin as all organisms are opportunistic - that's what life is about, everything eats everything, if you're weak (toxicity, deficiency) - you'll be eaten or colonised by another organisms. Why there is a methylation and mitochondrial dysfunction? Why there is neuroinflammation? Why there are antibodies etc? It's utterly absurd for it to appear "just because".

But then comes another problem, even if you start eating high quality high fat animal foods (natural human diet btw, that's why imo only humans and animals they feed with the same garbage they eat have some chonic health issues in the first place) and eliminate foods that are devoid of nutrition and often posses some toxic and antinutrient properties despite what conventional wisdom says (like veggies, whole grains, seed oils etc) hence restoring your immunity and other body processes - how still to eliminate the chronic infection (it won't go away even with proper diet obviously because it already established itself) if you don't know its nature (viral, fungal, bacteria, protozoa, slime mold etc)? Again, it's just my opinion but here you just decide on your own whether you go conventional western medicine route by firstly trying to find and identify the infection which in most cases will be impossible as humans are just humans, not all organisms can be cultivated, detected etc and then try to eliminate it with conventional methods which obviously are flawed (antibiotics, antifungals etc can't penetrate nor destroy biofilms for example, can't kill hyphal fungal infection in most cases which often make people believe they don't have an infection as they don't react to these things). Then second option is just to use very broad spectrum things like chlorine dioxide, high doses iodine, kambo etc and see the reaction. But even if you will decide to use it (despite what conventional wisdom says about these things) if you do enough research yourself, see beyond of how these things are portrayed and focus more on the logic, mechanisms and history of its application, read anecdotes from other people and weigh out all the risks and benefits, even then these things can sometimes be not potent enough to eliminate the infection/or it will take long time to do it.

But it just melts my heart when I see something like "Diagnosis" on Netflix or threads here trying to find some XYZ123 gene deficiency/ Il-23 cytokine overproduction/ NMDAr overexpression etc. It may seem woo woo but that's not what nature would create in your body without some underlying reason. I also tried to find these things myself for a long time, reading thousands of pubmed articles but it started to not make sense for me from a logical stanpoint.

Again, this is just my opinion and I will be interested to hear your thoughts on it, whether this hypothesis is somehow flawed etc,

I agree with most of this. Regarding evolution, it is true we are evolved to outsmart and survive, but the primary goal that determines our success evolutionarily is maximizing the ability to reproduce. From evolutionary standpoint, it only makes a difference to survive to reproductive age, past reproductive age, it makes no difference. So diseases like Alzheimer's might well partly boil down to the fact that evolution never meant us to live for as long as we now are living.

Regarding genetics, we have some evidence that genes are also one part of the puzzle in ME/CFS. Ron Davis recently reported (source) about results of testing for IDO2 gene mutations and it turned out that from 66 of 66 ME/CFS patients tested so far all have damaging mutations in this gene. Now more confusingly, 75% of the whole population has defects as well in this gene. But anyway, from a random sample, 66 out of 66 is extremely unlikely to be a chance finding, so it almost certainly implies IDO2 is somehow involved in ME/CFS.

 

[Fuluf]

Here I am again with quite a depressing update.

After my last message, in this 2 month period I tried lots of stuff including broad spectrum things, top down FMT from a supposedly very healthy donor etc. I'm still very sick, mostly homebound, doesn't digest food at all+this mucus, react to every food I eat, the term brain fog doesn't even describe the mind bending poisoned feeling of tripping on a combo of some potent drugs and mud. Every food I eat feels like going directly into the bloodstream, my brain physically feels inflamed. The worst of it, I can't see any direction where I can go in terms of dealing with the symptoms/eliminating the infection (recently started LDN but don't have high expectations). During my 3 year struggle I often read PR, how people here are bed/homebound and it seemed like different world to me - I didn't even have a thought I can be in the same position as I thought I'm too young and dealing mostly with "mental" issues and food sensitivities. Wow, never felt so trapped.

I'm also still sure this thing described above is indeed a real chronic infection, which colonizes mucosal surfaces and probably even tissues beyond gastrointestinal tract (as it's a cellular organism). I can't believe it's still not widely known at least in "alternative" health communities. On the other hand it's understandable as it seems there not much info on it in the internet besides ridiculing from medical authority or people claiming it's a helminth. This thing literally has DNA of Cymoninus Notabilus seed bug. I also came to the conclusion that my symptoms are so severe because the infection is being recognized by the immune system which it can't eliminate and the inflammation produced just adds up to the symptoms of the infection iteself. I suppose that's common mechanism in CFS/ME with other infections. There was short period of time last year when I felt 80% better after FMT and it was the first time my high lymphocytes/ low neutrophils percentage ratio changed to completely normal.

I read through @outdamnspot and @Fogbuster history and it seems like there is a high chance you may be dealing with the same issue. Especially outdamnspot as feeling better from junk food, reacting to liver, feeling wired/adrenaline while not eating/zero carb seems too familiar to me. Also as I understand brain symptoms are the most severe and problematic for you. It will be interesting to hear about your bloodwork, any lymphocytes/neutrophils ratios deviated from normal (percentage or absolute count)? Any sinus issues/pressure/vision problems? Do you have any experience with Ginkgo biloba, Ashwagandha, Saccharomyces Boulardii (or any yeast), how do you react to it? Any changes in wellbeing after the sunset? Have you tried coffee enemas, anything being passed after that? Would appreciate your feedback.

@Art Vandelay and @Prefect have you dived deeper into the issue since your messages, any updates? Do you have any experience with coffee enemas? As usually after them people discover the whole thing. Would be nice if someone else, at least one person on PR will recognize it as a real issue for it to be further researched together. I never seen so many motivated/sceintific oriented/knowledgeable people in one place anywhere else.

Would also appreciate any feedback on this as I'm completely out of ideas even on how to further navigate the whole thing.

 

[Art Vandelay]

@Art Vandelay and @Prefect have you dived deeper into the issue since your messages, any updates?

Unfortunately I ruptured my Achillies tendon so I haven't had a chance to see my doctor again or do much research.

I am still finding that I am making improvements taking digestive enzymes. The doctor who recommended them said that the Betaine HCL in them makes the gut more hostile to pathogens.

In addition, I believe the pepsin in them has improved my SIBO a lot (I no longer have stools that smell strongly of ammonia for example and I feel much less ''poisoned"). Apparently pancreatic enzymes usually keep the small intestine free of bacteria, so it fits that taking extra enzymes could help with SIBO.

My hunch is that the "poisoned" feeling in ME/CFS is caused by leaky gut (eg, endotoxins leaking from the gut into the bloodstream). My PEM has reduced and I am much less brain fogged too.

 

[Fuluf]

If anyone is interested, here is a full video from my colonoscopy (warning if you are squeamish)

 

[BlueShade]

@Fuluf
Well, from your endoscopy it seems that those things are easily coming off using plain water, so what about simply trying colon irrigation to get rid of them?

Thanks for sharing this very valuable video with us!

 

[Fuluf]

@Fuluf
Well, from your endoscopy it seems that those things are easily coming off using plain water, so what about simply trying colon irrigation to get rid of them?

Thanks for sharing this very valuable video with us!

Main problem here is that it grows back with phenomenal rates, unfortunately. Even after completely eliminating it from the colon either by plain water enemas or some treatment protocols it regrows very rapidly, it was seen again on the following colonoscopy. One has to be on the continuous treatment protocol quite for some time in order to eliminate all the spores(?) and infection itself, if it's even possible at all. In my case inflammatory reaction to the infection which arises when trying various treatments (and foods) is just preventing me from any progress and makes me feel awful.

 

[BlueShade]

Main problem here is that it grows back with phenomenal rates, unfortunately. Even after completely eliminating it from the colon either by plain water enemas or some treatment protocols it regrows very rapidly, it was seen again on the following colonoscopy. One has to be on the continuous treatment protocol quite for some time in order to eliminate all the spores(?) and infection itself, if it's even possible at all. In my case inflammatory reaction to the infection which arises when trying various treatments (and foods) is just preventing me from any progress and makes me feel awful.

OK that is of course very valuable information in case this was a correct observation, since till now the idea of ropes "growing" back (and how fast it happens) was a mere speculation. Do you happen to have the other video as well? And could you tell me how far apart the two colonoscopies were?

However, what do you think of the possibility of those things being created elsewhere and that they are then sticking to the colon, so the new ones did not really grow back that quickly? Maybe the are being leeched off in the small intestines since the food still contains liquids and they stick to the colon as it reabsorbs the liquid from the "processed food"?

You seem to have a very cooperative und open-minded doctor by the way