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Saliva or mucus transplant?

suevu

Senior Member
Messages
170
Since in many of us, the zone zero is in your neck/throat/nose (all that ENT area), even teeh, Root Canals etc... Its very clea rthat a very corrupt microbiome is behind this.

FMT offer a pretty good result for many of us.

But going even further, what do you think of trying saliva transplants from extremely healthy donors to bring inflammation down?

Discard your boyfriends/girlfriends/spouses, they will most likely be the people with the most similar microbiome to yours, but consider external donors.

What do you think? Im thinking of heavly load of microbes via saliva, even using nasal sprays with healthy saliva which is very rich in human microbes, with trillions of them, I think it can help bring inflammation or autoimmune conditions down. Probably taking lots of bottles for some time, not just doing it one day.

Let me know what you think please.
 

Wishful

Senior Member
Messages
5,749
Location
Alberta
Its very clea rthat a very corrupt microbiome is behind this.

It's not clear to me. I'm not saying that it's impossible, just that it doesn't fit what I've observed with my ME. I really don't believe that a microbiome transplant--gut or mouth or anywhere else--is likely to cure ME.

One piece of my counterevidence: the first few times I took iodine or T2, I experienced temporary full remission, starting within hours, and lasting for hours, then quickly returning to the ME state. That doesn't fit my understanding of microbiome changes and effects on the rest of the body.

Prednisone took several days before abruptly switching me to the remission state, but I don't see prednisone as a strong microbiome modifier. Cumin worked the same as prednisone; I think it's very unlikely that both of those could have the same effect on the microbiome. Modifying some cellular function seems more likely.


If you really want to experiment with diverse oral microbiomes, you could visit a pet store and kiss lots of animals...before being thrown out, of course. :lol:
 

suevu

Senior Member
Messages
170
It's not clear to me. I'm not saying that it's impossible, just that it doesn't fit what I've observed with my ME. I really don't believe that a microbiome transplant--gut or mouth or anywhere else--is likely to cure ME.

One piece of my counterevidence: the first few times I took iodine or T2, I experienced temporary full remission, starting within hours, and lasting for hours, then quickly returning to the ME state. That doesn't fit my understanding of microbiome changes and effects on the rest of the body.

Prednisone took several days before abruptly switching me to the remission state, but I don't see prednisone as a strong microbiome modifier. Cumin worked the same as prednisone; I think it's very unlikely that both of those could have the same effect on the microbiome. Modifying some cellular function seems more likely.


If you really want to experiment with diverse oral microbiomes, you could visit a pet store and kiss lots of animals...before being thrown out, of course. :lol:

Well, as some of the few individuals who has gone from severe to mild by doing proper FMTs from proper donors and knowing many other severe patients (some in this board) who experienced the same as me I have to disagree with you :)

This a very complex field, the drugs you took actually were substitutes for microbial activity, Prednisone is a well known immune modultator that is actually used when there is a wrong microbial activity and can be replaced with the right microbe modificator.

I'm not saying it's easy, of course is not, there are soo many actors involved in this behind our neuro inflammation, but I'm just proposing something that maybe someone has already tried? :)
 
Messages
11
Let's all go and french kiss a granny. lol

This smacks of desperation to me and it will not fix anything. It certainly will not solve CFS. Any bacteria would need to be something extraordinary to defeat the biofilm protected pathogens that cause CFS.

I will also not eat shit. FMT has been warned against by Doctors in my country. Desperation again IMO.
 

suevu

Senior Member
Messages
170
FMT has been warned against by Doctors in my country. Desperation again IMO.

Doctors? LOL please... The same who say ME CFS doesn't exist or if they do don't have a clue? Come on.. This is a serious board man.
 

suevu

Senior Member
Messages
170
This isn't that crazy of an idea. A family, and many others as the result of their story, cured their chronic sinusitis with the probiotic L. Sakei. They now sell a nasal probiotic spray. See here: https://lactobacto.com/our-story/

Interesting, my crazy idea is using donor saliva to swallow, or nasal spraying it as deep as possible. There is little risk, and nothing to lose. Now I have to find a suitable donor.

There are also reported cases where recurrent ear infections go away using earwax from healthy donors.
 

Wishful

Senior Member
Messages
5,749
Location
Alberta
Well, as some of the few individuals who has gone from severe to mild by doing proper FMTs from proper donors and knowing many other severe patients (some in this board) who experienced the same as me I have to disagree with you :)

The fact that they went from severe to mild, to me suggests that they're treating something (dysbiosis) that makes their ME worse. ME seems to make some of us more sensitive to minor abnormalities that would go unnoticed in healthy people. The individuals you mention might have had dysbiosis without noticeable symptoms before developing ME. Alternatively, they might have had mild ME if they hadn't had dysbiosis. FMTs might be an effective treatment for reducing ME severity in some people, but that doesn't mean that ME is caused by dysbiosis. Mild ME is still ME, so they weren't cured.

Some individuals might have more severe ME due to heavy metal poisoning, or some form of immune disorder. Treating those factors might reduce the ME severity too, but wouldn't be proof that ME is caused by those issues.
 

suevu

Senior Member
Messages
170
The fact that they went from severe to mild, to me suggests that they're treating something (dysbiosis) that makes their ME worse. ME seems to make some of us more sensitive to minor abnormalities that would go unnoticed in healthy people. The individuals you mention might have had dysbiosis without noticeable symptoms before developing ME. Alternatively, they might have had mild ME if they hadn't had dysbiosis. FMTs might be an effective treatment for reducing ME severity in some people, but that doesn't mean that ME is caused by dysbiosis. Mild ME is still ME, so they weren't cured.

Some individuals might have more severe ME due to heavy metal poisoning, or some form of immune disorder. Treating those factors might reduce the ME severity too, but wouldn't be proof that ME is caused by those issues.


It all comes down to microbes, ALL.

I wish I undesrtood the mechanisms underlying and how to solve it. I mean, you can break your leg by jumping off a cliff but you won't be able to fix your leg by climbing the cliff back. In this case a microbe can cause a severe damage but I'm not sure if removing this microbe and reintroducing a nice healthy community of microbes will restore the damage.

All diseases are related to microbes, without any exception including genetical ones, (microbes make those gene express themselves), ME is no excepction, most of us actually had the onset after an infection or series of them.

I recommend you reading "Missing Microbes", it will change your mind. Even autistic chidren seem to improve or even close to recover by introducing good microbes from healthy donors, it's now proven, we are no excepcion, but our disease is so complex that some peopel respond very badly to healthy microbe transfer. I have seen some ME CFS patient ending in hospital 10 days after an FMT... its a rare case, but it is real.
 

Wishful

Senior Member
Messages
5,749
Location
Alberta
All diseases are related to microbes, without any exception including genetical ones,

Cancers form and grow without microbes involved. Irradiate a germ-free animal and I'm pretty sure that it will develop cancer. Prion diseases are another example of non-microbial diseases. Deficiency diseases are another example. Toxins are another. I'm sure there are lots more types of diseases that don't involve microbes.
 

suevu

Senior Member
Messages
170
Cancers form and grow without microbes involved. Irradiate a germ-free animal and I'm pretty sure that it will develop cancer. Prion diseases are another example of non-microbial diseases. Deficiency diseases are another example. Toxins are another. I'm sure there are lots more types of diseases that don't involve microbes.

I think you should inform yourself a little bit more about cancer and the microbiome, actually mirobes play a huge role, even papilomavirus is a well known pathogen to cause cervix and many other cancers. Also in pancreatic cancer certain types of bacteria have been identified as main triggers, combined with genetical factors, same applies for liver and colon cancer, even H Pylori is well known to be the main cause of stomach cancer...

Deficiencies by the lack nutrients or any kind of self induced harm not eating properly shouldn't count as diseases.

Toxins are caused also by microbes or plants.

But in general, all diseases, probably with very few excepcions I have never heard of are caused by microbes. From all known STDs to all known infections, COVID, virus, flus, or even schizophrenia or depression are now known to be strongly associated to certain microbes.

Even most of us have developed ME after an infection. For me its very clear, i wish I knew the mechanism to reverse the damage, in crohn disease that also involves microbes, healthy microbiome transplants help put the disease into remission, my theory is just like healthy stool reverses damage in the gut, could healthy saliva or mouth/nose/throat fluids help recover damage in these parts as well?

Does anyone have any idea on this?
 

Wishful

Senior Member
Messages
5,749
Location
Alberta
I think you should inform yourself a little bit more about cancer and the microbiome, actually mirobes play a huge role,

I didn't say that no cancers were caused by microbes. What I said was that there are many non-microbial causes for cancer too, which refutes your claim that microbes are the cause of ALL disease.

Nutritional deficiency needn't be self induced. Some people have defects (both microbial and non-microbial) that prevent proper absorption of nutrients, or other defects that prevent them from being utilized properly, or cause them to be removed rapidly. I'm sure that the people who suffer from those problems consider it to be a 'disease'. Likewise, some people have defects that prevent the normal removal of substances, allowing them to build up to toxic levels.

Is atherosclerosis caused only by microbes? A quick check didn't find any link to microbes. Even if some microbes can increase the chances of developing the disease, it certainly doesn't seem to be caused only by the action of microbes.

Microbes do cause many diseases directly. They can be a factor in developing many other diseases. That doesn't mean that ALL diseases are caused by microbes. It also doesn't meant that all diseases can be treated/cured by removing or adding microbes.

I accept that some PWME could experience some benefit from microbiome modification. I expect that most wouldn't experience significant benefits. I think it's unlikely--but not impossible--for someone to be cured of ME via microbiome alteration. I think a lot more might harm themselves significantly by experimenting with microbiome transplants.
 

JES

Senior Member
Messages
1,322
I recommend you reading "Missing Microbes", it will change your mind. Even autistic chidren seem to improve or even close to recover by introducing good microbes from healthy donors, it's now proven, we are no excepcion, but our disease is so complex that some peopel respond very badly to healthy microbe transfer. I have seen some ME CFS patient ending in hospital 10 days after an FMT... its a rare case, but it is real.

FMT's are a promising emerging treatment, but the problem with FMT's is that according to everything I have seen, they are not a one time fix, people report they need to repeat the procedure at regular intervals to stay in remission. If microbes were the cause of the disease, why is the microbiome nearly every time reverting back to the old one soon after receiving an FMT? This suggests the root cause is elsewhere, even though microbes no doubt have an impact. If there was something like an FMT that you could administer safely at regular intervals, that would be a promising treatment. I believe Ron Davis is looking into gut metabolites, maybe they'll figure out something more practical than FMT's with a similar effect.
 

suevu

Senior Member
Messages
170
FMT's are a promising emerging treatment, but the problem with FMT's is that according to everything I have seen, they are not a one time fix, people report they need to repeat the procedure at regular intervals to stay in remission. If microbes were the cause of the disease, why is the microbiome nearly every time reverting back to the old one soon after receiving an FMT? This suggests the root cause is elsewhere, even though microbes no doubt have an impact. If there was something like an FMT that you could administer safely at regular intervals, that would be a promising treatment. I believe Ron Davis is looking into gut metabolites, maybe they'll figure out something more practical than FMT's with a similar effect.
Well, I still mantain all my gains from FMT, however the more I do I don't seem to notice more improvements.

I think it can help to some extent, thats why I'm now considering upper tract transplants, proper microbes from the oral/nasal cavity since the origin of my disease is there.
 

knackers323

Senior Member
Messages
1,625
Let's all go and french kiss a granny. lol

This smacks of desperation to me and it will not fix anything. It certainly will not solve CFS. Any bacteria would need to be something extraordinary to defeat the biofilm protected pathogens that cause CFS.

I will also not eat shit. FMT has been warned against by Doctors in my country. Desperation again IMO.

@Not_ME what are the protected microbes that cause cfs you mention please?
 
Messages
11
@Not_ME what are the protected microbes that cause cfs you mention please?
That is just it, they can be very highly variable. If you look at this forum for posts by people who have been actually cured which are very few of the people who have big improvements following treatment(s). The ones to look for are the ones who resolved things following antibiotic treatment. Those were the luck ones, lucky that antibiotics worked and did not promote resistance. It is not always bacteria.

I would not use antibiotics or any antimicrobial because it will in most cases create resistance against the causative micro-organism if the biofilm is not eliminated to prevent them developing resistance. The underlying cause of CFS/Fibro is always bacteria, yeast or fungi which are protected by a biofilm when they attack one location. There are other things of note but I will not go into those on a forum. No heads up to researchers because all of them have failed to notice simple things which could very easily be tested for.

This is my theory BTW which I am certain is correct. The reason why I have not cured my CFS is that I have been hit by so much stuff over the last 4+ years that I have not been able to get it done. I have some items that I believe will help such as a Genie vortex mixer and high power ultrasonic cleaner with various stands and large test tubes.
I have well over 5 large biofilms which contribute to my CFS all of which increase my digestive permeability and all must be eliminated in one go before I will consume the antimicrobial(s) that I have waiting for them.

That requires some work because the Quorum Sensing Inhibitors that I have are essential oils, one of which has successfully helped me remove the biofilm protecting what I believe is a gram negative bacteril infection. To remove all the biofilms the essential oils need to prevented from coalescing so that they are spread across a large area. Then enzymes can be used to break down the biofilm(s). Then use as many different Efflux pump Inhibitors as possible at them, Reserpine is the prime one ABC efflux but to make sure as many as possible. I do have a large list and I do have many of them. Then throw every antimicrobial at them that I have. I am attempting to make some Colloidal Silver which has failed against them but did destroy part of one of the biofilms. Gram negative bacteria can become resistant to silver ions by reducing them. Pomegranate can stop that and I do have some of that both juice and extract.
 
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ljimbo423

Senior Member
Messages
4,705
Location
United States, New Hampshire
FMT's are a promising emerging treatment, but the problem with FMT's is that according to everything I have seen, they are not a one time fix, people report they need to repeat the procedure at regular intervals to stay in remission. If microbes were the cause of the disease, why is the microbiome nearly every time reverting back to the old one soon after receiving an FMT?

One reason could be because those doing the FMT don't know what bacteria they are putting into patients. Nor do they know what bacteria in the patients need to be removed and/or replaced. FMT is in it's infancy and so much more information is needed before they can be used more successfully.

This quote is from a study that Thomas Borody did. He cultured 13 gut bacteria then transplanted them into ME/CFS patients gut. After a 15-20 year follow-up, 58% of the patients were still in complete remission!

In my view, the only explanation for these results, is that dysbiosis or altered gut bacteria caused there ME/CFS and the gut treatment (bacteriotherapy) resolved it.

All underwent initial transcolonoscopic infusion of 13 non-pathogenic enteric bacteria. 52/60 patients undertook an additional rectal infusion a day later and 3/60 undertook an additional 2 rectal infusions.

Results: 35/60 patients who underwent initial bacteriotherapy responded to treatment. 10/15 patients who failed this course were offered a secondary transcolonoscopic infusion followed by a rectal infusion or an oral course of cultured bacteria.

Of these 7/10 responded, giving a total of 42/60 (70%) patients who responded to treatment. Contact was achieved with 12 patients after 15-20 year follow-up. Complete resolution of symptoms was maintained in seven of the twelve patients and 5/12 did not experience recurrence for approximately 1.5-3 years post bacteriotherapy.

Conclusion: Bacteriotherapy achieves initial success rate of 70% in CFS and a 58% sustained response. Given that manipulation of the colonic microbiota improved CFS symptoms, bacteriotherapy for CFS warrants further investigation and may provide further insight into a possible etiology of CFS.

Source

So if the right bacteriotherapy or FMT is done, in the right way, you can have complete remission from ME/CFS for at least 15-20 years. The more that is learned about these treatments (FMT and bacteriotherapy), the more successful and long lasting they will be in ME/CFS.
 
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Wishful

Senior Member
Messages
5,749
Location
Alberta
One reason could be because those doing the FMT don't know what bacteria they are putting into patients. Nor do they know what bacteria in the patients need to be removed and/or replaced.

It could also be that there are other factors determining how successful a bacteria will be in an individuals gut. Maybe villi length or microstructure is critical for bacterial success; maybe amino acid absorption rate in the small intestine; lots of other possibilities. All guts are not identical, and they are not as simple as plastic tubing. Furthermore, the gut contents and microbiome are not homogenous: there might be territories with different conditions and populations, and a simple suppository or injection might not get the right microbes in the right place to be self-sustaining. As you say, FMT is in its infancy.
 

suevu

Senior Member
Messages
170
One reason could be because those doing the FMT don't know what bacteria they are putting into patients. Nor do they know what bacteria in the patients need to be removed and/or replaced. FMT is in it's infancy and so much more information is needed before they can be used more successfully.

This quote is from a study that Thomas Borody did. He cultured 13 gut bacteria then transplanted them into ME/CFS patients gut. After a 15-20 year follow-up, 58% of the patients were still in complete remission!

In my view, the only explanation for these results, is that dysbiosis or altered gut bacteria caused there ME/CFS and the gut treatment (bacteriotherapy) resolved it.



Source

So if the right bacteriotherapy or FMT is done, in the right way, you can have complete remission from ME/CFS for at least 15-20 years. The more that is learned about these treatments (FMT and bacteriotherapy), the more successful and long lasting they will be in ME/CFS.

We can't be waiting forever for science to understand the microbiome, it will take decades or centuries at this pace. If I were severe I would just jump into FMT, si the best thinkg you can do by far, and using a very good donor.