• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

The Undetectable Infection

Elph68

Senior Member
Messages
598
I read on here a lot of people doing FMT at home .... I reckon kefir is safer and 'theoretically' just as good/better than FMT ....
 

MeSci

ME/CFS since 1995; activity level 6?
Messages
8,231
Location
Cornwall, UK
Hi MeSci,

You may have already seen this

http://cdd.com.au/pdf/publications/All Publications/2013 - The GI microbiome and its role in CFS - ACNEM paper.pdf

But the CDD has actually 'cured' CFS patients by using FMT ....

The CDD in Sydney developed FMT .....

Thanks - hadn't seen that particular paper, but as my blog shows, gut dysbiosis is at the root of my own theories - by which I mean my theories based on scientific papers and my own observations.

I take different approaches to correcting the presumed dysbiosis. I think that relapse is likely if people over-exert or consume the wrong diet again, as these affect the microbiome. So maybe addressing the microbiome in one way or another can produce remission but not recovery.
 

Seven7

Seven
Messages
3,444
Location
USA
I have been bying Kefir In USA and discovered that the Kefir here is not real kefir so you have to make it yourself from grains. Something to do with the laws you end up with a product more like yogurt than the real beneficial kefir.

I did kefir water and it was easy to do.


I am in the same conclusion about the gut flora but I have been going in circles because if you add bacteria sometimes you can make the problem worse. So how I can make sure to add the right type, I did reasearch on the testing compnaies for flora and they all got horrible reviewes where the same sample was sent to different labs and got all different results. So I am kind of stuck, I do I add or FMT without making the problem worse???
 

MeSci

ME/CFS since 1995; activity level 6?
Messages
8,231
Location
Cornwall, UK
I have been bying Kefir In USA and discovered that the Kefir here is not real kefir so you have to make it yourself from grains. Something to do with the laws you end up with a product more like yogurt than the real beneficial kefir.

I did kefir water and it was easy to do.


I am in the same conclusion about the gut flora but I have been going in circles because if you add bacteria sometimes you can make the problem worse. So how I can make sure to add the right type, I did reasearch on the testing compnaies for flora and they all got horrible reviewes where the same sample was sent to different labs and got all different results. So I am kind of stuck, I do I add or FMT without making the problem worse???

Maybe best to ask in a more active general thread on gut flora, for example this one on prebiotics vs. probiotics.
 
Messages
82
just to reply about elph68 and his/her no carb diet. I can tell you that just about every infectious disease does better on a no carb diet. Ive been on tons of websites as ive been sick for yrs. and can tell you that the people that do best are the people on a no carb diet. Could it be that the inflammation caused by SIBO has damaged the gut mucosal lining and we are basically starving as the nutrients cannot get through a lining of inflammation....cool the fire with no carbs so the gut can heal????
 

MeSci

ME/CFS since 1995; activity level 6?
Messages
8,231
Location
Cornwall, UK
just to reply about elph68 and his/her no carb diet. I can tell you that just about every infectious disease does better on a no carb diet. Ive been on tons of websites as ive been sick for yrs. and can tell you that the people that do best are the people on a no carb diet. Could it be that the inflammation caused by SIBO has damaged the gut mucosal lining and we are basically starving as the nutrients cannot get through a lining of inflammation....cool the fire with no carbs so the gut can heal????

I agree with low-carb but no no-carb. The gut flora need some carbs.
 
Messages
82
one thing im just not too sure about with this undetectable infection theory.....how is it that some people, in the early stages, completely pull out of this?
I too was one of these people that had a complete reversal only to fall back and never recover. like everyone else here im just throwing things around here so if it sounds like im jumping around ....im trying not to.
could it be that our immune system is so powerfull that it tries to move the infection or just years of built up gunk, out of the body but sometimes fails to completely get rid of it so instead the immune system jammbs up? Could this explain why some people are slowly getting better after years of diet an detox...because the initial immune clearing did not completely happen so the immune system is grinding and waiting for the host to stop eating the wrong foods and get back to detoxing.

could it be that a persons immune system gets out of balance, either from infection or antibiotics given earlier (like me for acne as a teenager) and bugs get picked up and jamb up the immune system even further with gunk so the immune system will not be able to clear things so instead of clearing things it picks up viruses etc. along the way so to speak. Then the immune system says to itself....."self"..."ive had enough of being clogged up so im going to try clearing out all this gunk that no doctor can detect because its just gunk"....gunk like some of the gunk people see when they do a liver cleanse.
I was lucky enough to have had an immunologist many years ago that was so very smart. I was one of the early pioneers that got this illness way back when we were all called crazy...so crazy that i had to hide under a rock until now. He was so dedicated to his patients...he was the first doctor in the world to give a peanut allergic child a peanut and later turn that reaction off with a drug. He was so dedicated to us. My last visit with him was at his age of 89 at his home because earlier in his career the other docs pushed him out because of his age and his way of treating patients with diet.
Anyway...sorry i got off track....this doctor was so dedicated that he would share other patients tel. numbers with each other etc. ...we would all meet at his home as well. So i found out there was an ex patient of my docs that had gotten well. I found this recovered guy. This man was lucky in that he was a big farmer that had the funds to build an enviro house as to stop his reactions. After he was able to stop his reactions in this retrofitted home, he also grew a garden as many of the foods he ate from a regular grocery store were laden with chemicals which he believed kept him from getting well. One day, after seeing a quack type doctor that gave him herbs and phyillium hulls (a plain form of metemucil) to detox, he realized he had to take a bowel movement...he did and when he did he stated the whole house wreaked of a terrible smell and when he looked in the toilet bowl after his bowel movement, it looked like a black piece of tar and smelled like one too. After this bowel movement ....he was cured. He stated to me that it was just like someone turned a lightbulb on and his immune system took off. Interesting because when i first became ill with this my bedroom smelled like tar and to this day when i rub my finger along the groove just above me chin, i also smell that smell on my finger. HAPPY EASTER EVERYONE AND GOD BLESS
 

Seven7

Seven
Messages
3,444
Location
USA
@Elph68 I am courious on your line of thinking, Sorry I follow this very closely and I wonder why FMT instead of identifying the infection that got into the Lymph (via culture of tissue) or both. Even if you cure your gut, doesn't the lymph infection needs to be addressed?

What I understood from another of your threads is that you think the bacteria (good overgrown kind) made it to the lymph system and is trapped there. So if you do not address that, how is FMT will help overall???
 

Elph68

Senior Member
Messages
598
@Elph68 I am courious on your line of thinking, Sorry I follow this very closely and I wonder why FMT instead of identifying the infection that got into the Lymph (via culture of tissue) or both. Even if you cure your gut, doesn't the lymph infection needs to be addressed?

What I understood from another of your threads is that you think the bacteria (good overgrown kind) made it to the lymph system and is trapped there. So if you do not address that, how is FMT will help overall???
You are right in what you say but in a lot of cases I don't believe it is just one bug causing the dilemma.

The reason why FMT works is because they use some really powerful antibiotics at the CDD such as vancomycin, gentamicin, with double and triple therapy .... I was on 4 antibiotics at once with the first round of treatment .... So the FMT program at the CDD also clears out the lymphatic system if they use the right combo and then the lost bowel flora is replaced with a flood of new bacteria.

Everybody seems to be looking for that one link .... It is all in your head said the psycho babblers, now they say it is all in the gut .... What seems to be overlooked is that it is a complete systematic overgrowth not just in the gut, but from the gut, lymphatic translocation takes place. If it is all about the gut, then why doesn't everybody with CFS have IBS?

So getting back to your question ... If you have an overgrowth of a certain type of bacteria that is constantly interacting with your immune system in the gut, flooding it with other types of bacteria should theoretically reduce the number of bad bacteria in your system and therefore reduce the immune system interaction and reduce the level of toxins these bacteria produce. Therefore reducing symptoms .... Discussions I have had with researchers here in Australia claim that this will result in up to 70% recovery if you follow a low sugar diet and take supplements..... This approach is also the focus of Griffin University in Queensland ..... Put more bacteria in the gut to crowd out the bad guys ....

The thing that it seems everybody is missing .... Biofilms .....

Those of you who have this really bad, I believe have the colonic equivalent of tartar found on teeth ....
 
Messages
82
yup i have a serious case and i believe i have biofilms. There are bowel transplants now that transplant with viruses instead of bacteria as they believe virus transplants work better with biofilms. Sadly ...the only place to get a virus transplant is Russia and a tiny country called Gorgia..not to be confussed with the USA state of Gorgia

interestingly...people with lyme also have the bugs stored in their lymph. I believe the lymphatic system is a storing centre until the body deals with the bugs...that is why we are all shifted to the th2 side from the th1 side of the immune system. Even folks that have their lyme treated are not well yet because the bacteria good and bad gets killed off.

Does not matter what infection...it all leads to a jambing of the immune system over to the th2 side. The immune system just keeps grinding and grinding
 

Elph68

Senior Member
Messages
598
yup i have a serious case and i believe i have biofilms. There are bowel transplants now that transplant with viruses instead of bacteria as they believe virus transplants work better with biofilms. Sadly ...the only place to get a virus transplant is Russia and a tiny country called Gorgia..not to be confussed with the USA state of Gorgia

interestingly...people with lyme also have the bugs stored in their lymph. I believe the lymphatic system is a storing centre until the body deals with the bugs...that is why we are all shifted to the th2 side from the th1 side of the immune system. Even folks that have their lyme treated are not well yet because the bacteria good and bad gets killed off.

Does not matter what infection...it all leads to a jambing of the immune system over to the th2 side. The immune system just keeps grinding and grinding
Hi Roonie,

You are referring to phage therapy and the viruses kill the bacteria, not replace them. I have been in discussions with a clinic in Tblis for nearly 2 years and we have worked out a treatment plan. The only thing with phage therapy is you need to know exactly what the bacteria are that you want killed off .... I have figured that out with all my family BUT, if you don't have access to a lab like bioscreen, you have no idea what phages to use as they are bacteria strain specific ... a phage that kills streptococcus pyogenes, probably won't kill streptococcus mitis ....

You then still need to replace the void that killing off the bacteria causes ..... That is where FMT can then come in ....

I have mentioned phage therapy throughout this thread and I believe it offers the best way to deal with this, BUT the treatment is highly experimental and I wouldn't even consider promoting it until I have done it first ....
 
Messages
82
yes ...sorry, phage therapy. It was on David Suzuki's Nature of Things program up here in Canada...very interesting program. A lady was on the program that was allergic and could not eat anything barely ...she did her own bowel transplant from her husband's poo and is fine now. Not sure if she had an infection but the show did state that others did. It will be interesting to see where all this new technology leads us. I have a friend that is a gastro specialist that just keeps saying to me....just stay on your diet. I happen to know he is one smart cookie with high regard here in both our community and throughout the medical field as well...so i stay on my diet...ok...i cheat too. Am i cured...far from it. I look morbid in the mirror. Trying mms soon as ive had a little success in the past..had to take a break from it.
 

MeSci

ME/CFS since 1995; activity level 6?
Messages
8,231
Location
Cornwall, UK
Everybody seems to be looking for that one link .... It is all in your head said the psycho babblers, now they say it is all in the gut .... What seems to be overlooked is that it is a complete systematic overgrowth not just in the gut, but from the gut, lymphatic translocation takes place. If it is all about the gut, then why doesn't everybody with CFS have IBS?

Gut dysfunctions don't always present with gut symptoms. Coeliac disease is an example of a dysfunction which does not always produce gut symptoms.

There is a range of scientists with different theories about ME and many of us are interested in many of these. Some just relate to different pieces of the jigsaw puzzle. As I think you know, it appears to be a very complex illness, with different systems interacting. Is there a chain of causation or would it be more usefully viewed as a web? Probably the latter, but perhaps there is some element of a chain as well: predisposition(s), trigger(s), perpetuating factor(s).
 

gregh286

Senior Member
Messages
976
Location
Londonderry, Northern Ireland.
You are right in what you say but in a lot of cases I don't believe it is just one bug causing the dilemma.

The reason why FMT works is because they use some really powerful antibiotics at the CDD such as vancomycin, gentamicin, with double and triple therapy .... I was on 4 antibiotics at once with the first round of treatment .... So the FMT program at the CDD also clears out the lymphatic system if they use the right combo and then the lost bowel flora is replaced with a flood of new bacteria.

Everybody seems to be looking for that one link .... It is all in your head said the psycho babblers, now they say it is all in the gut .... What seems to be overlooked is that it is a complete systematic overgrowth not just in the gut, but from the gut, lymphatic translocation takes place. If it is all about the gut, then why doesn't everybody with CFS have IBS?

So getting back to your question ... If you have an overgrowth of a certain type of bacteria that is constantly interacting with your immune system in the gut, flooding it with other types of bacteria should theoretically reduce the number of bad bacteria in your system and therefore reduce the immune system interaction and reduce the level of toxins these bacteria produce. Therefore reducing symptoms .... Discussions I have had with researchers here in Australia claim that this will result in up to 70% recovery if you follow a low sugar diet and take supplements..... This approach is also the focus of Griffin University in Queensland ..... Put more bacteria in the gut to crowd out the bad guys ....

The thing that it seems everybody is missing .... Biofilms .....

Those of you who have this really bad, I believe have the colonic equivalent of tartar found on teeth ....

Totally with elp on this one. Reason being, although i have no gut issues, i get reactions from gut products, its not always consistent but noticeable. I had triple ABX therapy one time, cured for 3 months.
Switched to nystatin, got relief, then it comes back. Now, mastic gum seems to suppress whatever bacteria and/or biofilms that causes the toxins.
Our immune system is identifying certain bacteria as pathogenic,
Ciprofloxacin i found is good abx for strep maintenance.
 
Messages
82
all i can tell you is i am one of the people that had a complete reversal of this in the early stages.....i had problems with chem. sensativities for yrs. along with other issues. Things kept getting worse..then the tipping point for me was when i did my hardwood floors with a chemical. i closed all the windows due to a dust storm outside....the chemical buildup in the home tipped me over the edge and my immune system went into over stimulation...slept in a tent...bla bla bla....THEN.... when i was still trying to sleep in the backyard and still hold my job down, i herniated a disc....the nuerologist put me in hospital for 10 days bedrest...this is when i stopped eating for 5 days....i stopped eating because my immunologist told me to sort my diet out a few days prior.....it was when i began to eat again that my immune system started to function normally again...so i got up out of the hospital bed with no back pain whatsoever and left.....i got home and said to my wife that i was cured of whatever was causing this...i had bounce in my step .....i was cheery...i felt awesome...well....after a week of feeling this way ...i slowly began to feel the effects of this creeping back into my life....after 1 week my skin began to bleed in spots....i could, with my finger , wipe blood from these spots....a week later all of those bleeding spots turned into moles...yes that fast and all at once, all over my trunk, arms etc. I even still have a spot on my back that is still red and never turned brown. When all of this happened so fast i was able to feel what happened in my body....it felt as if my contents of my guts leaked into my lymph system and plugged the lymph system...to this day i have lumps under my skin all over....and things have stayed this way for years now....just all jambed up.

interestingly these brown spots change from lighter to darker from time to time. I recently flew to palm springs CA and they changed dramatically lighter...then when i arrived back home in Canada, they got darker for a short period of time and now back to they way they normally are. If you know people with lyme they will tell you they feel different when they change locations on earth...heck i feel different just leaving my home. When i slept in my tent due to the floor finish, i would enter the home and a total body rash would appear all over my trunk etc. , when left the home the rash would leave....to me it looks like a heat rash of some sort. Do i have lyme...i dont know....i cant get any help...its like ive been blacklisted by doctors here and they get upset with me??????

I believe the chemicals in that floor finish is what triggered the onset of this. There is word in the natropathic area that these nasty chemicals can damage the thyroid and other endocrine systems. The chemicals in the floor finish were Benzene and toluene (spelling?)...they cause cancer and are no longer in use in Canada.

So because all of this happened to me so fast i am able to say that without a doubt whatever was building up for years finally the immune system wanted to clear it out and made a last ditched effort to do so....my immune system tried and lost the fight and is now exhausted...oh it still tries but its so weak now that i have to balance everything out. Ive tried that same fasting a couple times and can say now for people like us that fasting is dangerous...at least for me. I am now just trying to cope with a diet.
Could all of this just be toxic build up and that is why nothing ever shows on tests???Or...are we all living with superbugs due to abx overuse. I was, as a teenager given huge bottles of tetracycline for, my mother tells me, over a year straight that never did take my acne away. Later, i took my shirt off and the sun took my acne away in a few days. Could it be that we are all victims of abx overuse?
I will now just add that on many days i feel close to death.
 
Last edited:

xks201

Senior Member
Messages
740
any d or l lactate producing bacteria probably should be avoided as high dose probiotics as they interconvert in the body