My current understanding of PATM and where it leads us

[dontgiveuphope]

I’ve been doing a lot of reading on so many research papers on various diseases and trying hard to see patterns or correlate them. It’s really difficult but it seems there are patterns. I’ve tried to summarize it below.

If you look at the different digestive conditions and gut autoimmune diseases, such as IBD, IBS, Coeliac disease, gluten sensitivity etc., they are related in a way because it’s happening in the gut (small & large intestine). I would guess TMAU2 and PATM seems to fall in somewhere. Here’s why I think so.

Coffee is considered a good nutrition for the liver but coffee is known to irritate the gut. Doctors recommend people with bad livers to drink a lot of coffee. It’s not known specifically why, but some people think it has something to do with a number of proteins that coffee contains. These proteins seem to irritate the gut lining, in other wordings, it’s bad for the gut especially genetic susceptible people. As we know coffee is really bad for PATM. So here we have coffee which is good/helps heal the liver but bad for the gut…and also makes PATM worse? I think this should indicate something because most of the things good for the gut are also good for the liver, things bad for the liver is also bad for the gut, but not coffee. Coffee seems to narrow PATM to the gut itself as the source.

Coeliac disease (CD) is an autoimmune disease where small intestine lining of predisposed individuals is inflamed by a group of proteins called gluten. Researcher’s say that it takes at least 6 months for children and 2 years for adults of CD to go on an absolute gluten free diet to cure themselves. But they may get it back once they’re on a gluten diet because of the genetic susceptibility. Most CD individuals try but still cannot heal their injured small intestine and live their whole life with the disorder. Some say it’s because it’s hard to be really 100% gluten free because any small amount can set you back to the beginning, and there are other sources that can irritate the gut, not just gluten. For instance, almost all foods have pesticides. These chemicals harm the gut of susceptible individual nonstop and not allowing it to heal. Even the water has chlorine. Most drinks have compounds that irritate the already injured gut. Alcohol and medications can keep the gut forever injured.

Researchers on CD say children heals faster than adults and with all that being said, it’s probably reasonable why newer and younger PATM members report being treated with things such as RESTORE, Brown Rice Protein Power & saccharomyces boulardii, Nigella sativa seeds, veggie diet, vitamin D etc. I think age has something to do with it especially if you’re still growing up because the healing and growth process is faster during youth, but the most important thing is probably the level of damage or severity in the gut. Young people whom have just acquired it only have a mild and small part of their gut affected, but much older people may have continued to worsened their condition over time.

So if you’re PATM has just started, chances are, if you follow a strict lifestyle change i.e. eat only vegetarian diet, absolutely no gluten, no alcohol, coffee or any irritants or toxic substances, then you have a greater chance of getting rid of the problem very quickly, something like 2 years. The strict lifestyle change has to be strict or you’ll keep going back. If you take things that rejuvenates the gut like RESTORE, probiotic known to increase tight-junctions similar to the three strains I mentioned earlier, good source of amino-acid powder, Larazotide, Vitamin D etc. then it will heal even faster.

I think people like me whom have had it for very long time is really in a bad shape. The amount of lifestyle change and time that I have to go through strictly to cure this thing, is probably at least 5-7 years. If I do get healed, I really can’t go back to my old lifestyle because of the genetic risks. It means I have to follow the strictest died and most importantly, the good supplements that heals the gut several times faster. Btw, there are a number of proteins known to heal the gut quickly and I think this is why the Jarrow protein & amino-acid power works well. There’s a synthetic 8-amino-acid peptide being studied now that heals the gut of CD patients. It’s a protein that shuts the openings on gut lining(leakygut). I’ve been trying to get it, so I can dose it together with RESTORE and a couple of probiotic strains of my choice but I can’t. Anyone can get it through their doctor.

I think somewhere in our small intestine, there’s really a serious leakygut issue, which allows undigested/partial digested food and microbial toxins to seep through into the bloodstream. These normal gut toxins which should have been removed via feces, instead end up oozing out of sweat glands and exhaled out of the lungs from small blood vessels.

I have found that vitamin D3 is used on many digestive problems and gut autoimmune diseases including leaky gut. It plays an important role in healing inflamed gut and also helps the immunity. Perhaps it might explain why @Ray2502 had both low IgA and vitamin D. Vitamin D3 has hardly any role in the liver and sometimes toxic to the liver.

I haven’t left out info on any product with antibiotic/antifungal properties because it’s known quite extensively. Products like metronidazole, oregano oil, black seed oil, charcoal etc.… these products just lower microbes and sequential lower toxins produced so they do their part in alleviating PATM but they don’t heal tight-junctions and overall leakygut.

If the actually gut lesion and gut permeability is caused by a specific bacterium, then the latest antibiotics which is not out yet publically will surely cure it in the future, but I doubt this is the case. Why? Because TMAU2 patients have been put on harsh rounds of antibiotics and the condition returned straight afterwards.

Currently I think the only difference between TMAU2 and PATM is where on the gut is happening, added with bacterial species and how severe it is. I think PATM are caused by minor lesions further up the small intestine near the duodenum. TMAU2 would be further down the small intestine near the ilium upper portion of the large intestine. It would explain why they have sometimes faecal smell, rubber, TMA(fishy) because feces are beginning to smell at this point. I also think it is possible to have both TMAU2 and PATM which would be categorized by have all symptoms of both conditions. Such a patient would have gut problems throughout the small intestine.

I think the key difference between all these diseases is where the problem is on the gut and the consequences that follows through.

I think PATM and TMAU2 patients will increase in numbers exponentially over the decades as more and more people are exposed to more harmful gut irritants and toxic substances.

[dontgiveuphope]

If any of you come across Larazotide (larazotide acetate), please let me know. I don’t think it’s out yet but I’ve been waiting for it. Different companies have started investing in finding compounds to relieve/cure gluten sensitive gut and leakygut so I wouldn’t be surprised if alternative medications are available right now without me knowing. If you guys come across one let me know.

[Hailstormer]

Great post. Your on top of this weird sickness.

[isuffertoo]

Well said

[ray2502]

Hello dontgiveuphope,

What about the defective FM03 enzyme located in the liver? This has been diagnosed in a lab environment by scientists to cause TMA2.

I live in a city of more than 8 million people and I have yet to meet a single human with my symptoms.
If antibiotics are so toxic, why is there not many people that are sick like we are? My friends at work take all sorts of antibiotics for a common cold which I would never do.
If we took a round of antibiotics and irritated our guts even more, why would it improve and not worsen? How come they can't detect these toxins in our blood if they are so prevalent? I would think that they would stick oHello dontgiveuphope,ut like a sore thumb during a blood analysis.

We just have so many questions and very little definitive answers.

[dontgiveuphope]

Hi ray2502, good hear from you.

“What about the defective FM03 enzyme located in the liver? This has been diagnosed in a lab environment by scientists to cause TMA2.”

You’re right, I’d exclude TMAU2 with defective gene if they exist.
Btw, can you send me that paper please?

“I live in a city of more than 8 million people and I have yet to meet a single human with my symptoms.”

I know, PATM is rare. There was a time I thought I was the only one after traveling the world and not meeting one person like me.

“If antibiotics are so toxic, why is there not many people that are sick like we are? My friends at work take all sorts of antibiotics for a common cold which I would never do.”

Toxicity level depends on the type of antibiotics. They warn us about it. It’s on the label sometimes. For instance, doctors will ask about your liver condition before giving metronidazole or albendazole. Why not so many PATMers? Genetic susceptibility as I’ve explained plays a major role. We all eat gluten but some will get sick and almost die from it. We all eat food but some people are prone genetically to diabetes. Their pancreases fail easily. Also, the long usage doesn’t really matter, it’s the amount at a given time – what we call overdose. For instance, you can take creatine for life using the normal dose but you can triple the dose and your kidneys or liver would fail within 2-5 years. Take cocaine sparingly and you’d survive but if you take all 2 months’ dose on one go, your organ systems will fail.

We’ve concentrated on antibiotics but it’s not the only toxic substance out there. Some medications for other things contain irritants as well. Most recreational drugs are toxic.

“If we took a round of antibiotics and irritated our guts even more, why would it improve and not worsen?”

I was referring to the actual airborne toxins because that’s agent that makes people allergic, not our gut. As I’ve explained, antibiotics kill off microbes in your gut, good and bad. Many of those microbes are the producers of these toxins. It’s these toxins that get through the damaged gut lining into the bloodstream and get airborne through sweat and breath. Once microbes die, toxin production stops temporarily until antibiotics wears off after 6-12 hours and microbes grow back. During that time drug also negatively affects our already inflamed gut lining cells – making it worse, so when more toxins are produced, theoretically gut permeability has gotten worse therefore the rate of diffusion across the gut increases allowing more toxins to concentrate in your blood. Antibiotic means anti-life. They are designed to kills living cells. While it cannot always kill all kind of cells, it was meant to kill cells… therefore most antibiotics will have a negative effect on vulnerable cells… like ours.
A slap wouldn’t do that much to us adults because we’re healthy and strong but it can easily kill an new born.

“How come they can't detect these toxins in our blood if they are so prevalent? I would think that they would stick oHello dontgiveuphope,ut like a sore thumb during a blood analysis.”

That’s another one-million-dollar question? If it was that easy we wouldn’t be here. You can’t detect all microbial toxins or compounds. Forget toxins for a moment because it complicates things. Just call it microbial compounds. Each microbial species produces lots of compounds, but nobody has been able to count and identify all the gut microbial species then how on earth could they know all the compounds from all these unknown species? When doctors look for a toxin, they are looking for a specific toxin that has been documented. They know the compound and molecular formula for it. They know what it does. Just as we can’t scan for an unknown computer virus. We have to wait for the antivirus company to work day and night to identify the new species and send us the definition file, the criterion of identifying the sore thumb as you would call it. Once we update, our antivirus program can pick it up the hidden virus.

Again forget toxin, just use compound to cover them all whatever it is. No one has been looking for this unknown compound because there’s a whole list of things to cover before that. They wouldn’t look for it if they haven’t believed us. MeBO is the only people trailing this problem right now. If I remember correctly, the researcher said, there are so many metabolites, they might not look at them all because it’s just too costly, so there goes our luck diminished…lol.

To analyze all the compounds in urine & blood sample, they’d have to send them to different companies that contain large machines such as the GC-MS, LC-MS, NMR, HPLC etc. These molecular analyses are very costly. Each method doesn’t necessary show all compounds so you have to combined a variety of technologies and techniques to get them totally and accumulate all that data into one.

Here’s another thing, there’s no straight forward way to tell which compound is causing the problem once we have it. For instance, you can find heaps of allergic compounds in those sample analysis i.e. histamine, hormones etc. you name it. They’ll have to use things like concentration levels and ratio to determine which one or more are likely causing PATM.

[dontgiveuphope]

“defective gene”,  sorry I meant “defective FMO3 enzyme”

[dontgiveuphope]

All antibiotics/antifungal, regardless if it’s natural or artificial are slightly toxic and some are really toxic to human cells. This is because they are intended to kill cells, that’s their purpose. While they kill microbial cells faster and more specifically, it will still harm other human cells to some extent. So injured human cells/tissue are sensitive to any toxicity.

This is the same dilemma that cancer treatment protocols go through. Every cancer drug kills cancer cells but also human cells along the way. The trick is to find a treatment that harm human cells less and that the body can heal it faster than damages caused by the drug or radiation.

So while we take antibiotics/antibacterial supplements/medications to lower PATM because it kills the bacteria responsible for all the toxins, it will actually harm our gut and promotes PATM in the long run. It’s just a matter of how fast the healing process of the body work and aided from other supplements taken.

I noticed this effect when I was trying out many strong antibiotics in the past but I couldn’t really understand it. Every time I succeed on 2 or 3 antibiotics (natural or artificial, didn’t matter), PATM ceases to exist and I’m happy, but as soon as the cycles stop, PATM returns really really bad but I expect it would bounce back to what I was used to but it never did. It seems to get a little worse every time I’ve completed some kind of antibiotics/antimicrobial substances.

It seems the best way is to try and heal the gut and only use antibiotics when intending to attend a crowded event. There are some antibacterial substances with very low toxicity such as charcoal is probably OK, so if you know an antibiotic/antibacterial and have researched it to be not so toxic then use that. But my guess is, it’s best to just avoid it if you can, to allow for faster healing.

I remember during a lab first year and probably most of you at uni have done it, we tested many natural antimicrobial substances and among the available was lavender oil/leaf, oregano oil and tea tree oil. I chose of all of the above. I think the strain used was E.coli because it’s a favorite model organism. I am not sure but it was the same strain for all the entire biology course students. One strain makes it easy for marking. Anyway, when we came back, the following week to check our petri dish, many had a single hole in the middle on one of their 12 dishes. I happened to pick tea tree oil so I had a hole on mine too. The agar was completely clean of bacteria. It just killed everything including the petri dish…hahaha. For those of you who don’t know, this is how we do in vitro tests and compare antimicrobials efficiency in labs. You can have several agar plates like this with all kind of tested drugs against various strains of microbes i.e. fungus, bacteria etc. The drug/substance is in the middle (white); the cleared space surrounding the drug is bacteria free. The bigger the cleared area the better antibiotic efficacy of the substance.
http://www.scielo.br/img/revistas/bjm/v38n4/ar18_fig04.jpg

By the way, the glass melted hole looked like it was burned by acid from the alien movie. Actually we found out that the plates were plastic and not glass. Our professor reminded us that some antibacterial/antibiotics medication will kill host (human) cells too so it’s something we have to consider.

Therefore, the harm to host cells must be limited when choosing antimicrobials but because our inflamed gut is too sensitive, I think it’s better to just avoid it for the long run healing process.

[Smellyorus]

Great post. Sort of a culmination of months of your research. Really appreciate your dedication to solving this thing. And the ending is spot on. This will become a major issue in the future and thus, may be solved in our lifetime if it transitions from extremely rare to not so rare.

One thing I have never understood is why meat is such a big offender for PATM? No leaky gut, GAPS, autoimmune-paleo, gluten free, or Candida diet excludes meat. Why do you think meat causes so many problems for us, but not for other gut condition sufferers?

[dontgiveuphope]

Thanks @Smellyorus and I appreciate your reply. Yes, I’ve spent so much time reading a lot of the relevant academic papers and believe it or not, there has been a lot of researches in many relevant areas but no scientist has been able to amalgamate these ideas for the purpose of tackling our condition, and I think it has a lot to do with the rarity of our condition, apart from the strangeness.

This is just how it is in the real world. Any disease that doesn’t give a promising career to scientists, no one will come our way. But we are not the only condition with this lack of support. Nearly all of the rare ones suffer just like us.

Most meat such as beef, chicken, turkey are from commercial livestock. These are fed with grains (wheat, corn and others). All their food is full of traces of pesticides and chemicals during production. That’s why it’s hard for us to escape. Organic meat is preferred but I can understand why it’s really hard to find because it’s expensive. Some people think this is why most digestive and gut autoimmune diseases such as celiac disease is hard to heal.

People with celiac disease and gluten sensitivity are warned not to eat meat, eggs or drink milk, dairy products fed on grains, which is most of them. It was only recently some farms went back to grass because they notice gluten intolerance has grown…so there’s a market for both non-gluten food and medications.

The reason why the gluten market has grown over the years is because common people are aware that these proteins (gluten) actual harm the gut directly, regardless if you’re genetically susceptible or not. It works slowly over time. Some symptoms of gut problems can show up for someone who’s not genetic at risk during old age, so some people prefer to just avoid it altogether. There’s actually a lot of stuff that can harm the gut lining but most people heal faster than the actual harm done.

These days prawns and shrimps are farmed too in many countries, except for wild ones harvested from the ocean which are pretty rare, but farmed prawns are fed with fishmeal which is still good. This is one reason one prawns and shrimps are good.

Also, animal fats are not so nice to an already injured and inflamed gut. When the gut is inflamed like that, any slightly harsh substance like wine, beer and slightly toxin drinks/food will sustain or worsen its bad condition. It’s like the skin of a new born baby. Almost anything can ruin it, unless it matures.