It's all in the Gut. Why we get ME/CFS

[leela]

Please go read the articles I posted links to here. I think this is a big piece of our puzzle:
http://forums.phoenixrising.me/show...l-linked-to-GMO-pathogens&p=182458#post182458

 

[lansbergen]

I think, at least in my case, that the problem in the gut was not microbes but neurotransmission. If the gut's getting the wrong instructions and giving the wrong feedback then it's little wonder that microbial colonies go feral.

The link with antibiotics might just be that the gut is unable to restore normal flora afterwards due to a dysfunctional feedback mechanism.

Good of you to see the nervesystem connection.

 

[redo]

I am thinking that one issue we would have to deal with, is that - if - it's in the gut. We have no way of knowing if it's the small intestienes, large, or perhaps other parts of the gut. Yes, in Borody's trials they improved with large intestine transplants. But that was fatigue and brain fog. I think that the thing behind all of this, would be that the body isn't able to control the gut no more, so it's not just one of the intestines. I think we might have to reach both, depending on which symptoms we have.

 

[lizw118]

Hi, Richard.

I think the neurotransmitter-related issues are a big part of what's wrong in the gut in ME/CFS. The ones responsible for controlling gut motility are acetylcholine and serotonin. In many cases of CFS, it appears that both are in short supply as a result of the partial block in the methylation cycle, which lowers choline synthesis, and the coupled dysfunction of the folate metabolism and the biopterin cycle. Tetrahydrobiopterin is needed in the synthesis of serotonin from tryptophan.

My current view is that the methylation cycle and the gut have to be brought up together in many cases of ME/CFS, because there are so many interactions between them, and problems with one hold the other down.

Best regards,

Rich

Would taking an ssri help those of us who are low in serotonin? Would it help the gut function better?
Liz

 

[richvank]

Would taking an ssri help those of us who are low in serotonin? Would it help the gut function better?
Liz

Hi, Liz.

SSRIs haven't worked out very well for PWMEs/PWCs. On the average effectiveness ratings at the CureTogether site, they are ranked near the bottom, just above drinking alcohol and graded exercise therapy, which are at the very bottom: http://curetogether.com/chronic-fatigue-syndrome/treatments/

In my opinion, it's better to fix the basic problem in the metabolism that is causing the low serotonin as well as the other neurotransmitter-related problems. You guessed it!--I'm talking about lifting the partial methylation cycle block, which is linked to the folate metabolism, which in turn is linked to the biopterin cycle. Tetrahydrobiopterin is necessary for the synthesis of serotonin and several other neurotransmitters. Methylation is needed for the synthesis of acetylcholine and for other aspects of the metabolism of the neurotransmitters. In order to straighten out the entire neurotransmitter mess in ME/CFS, the methylation cycle block needs to be lifted.

Best regards,

Rich

 

[lizw118]

Hi, Liz.

SSRIs haven't worked out very well for PWMEs/PWCs. On the average effectiveness ratings at the CureTogether site, they are ranked near the bottom, just above drinking alcohol and graded exercise therapy, which are at the very bottom: http://curetogether.com/chronic-fatigue-syndrome/treatments/

In my opinion, it's better to fix the basic problem in the metabolism that is causing the low serotonin as well as the other neurotransmitter-related problems. You guessed it!--I'm talking about lifting the partial methylation cycle block, which is linked to the folate metabolism, which in turn is linked to the biopterin cycle. Tetrahydrobiopterin is necessary for the synthesis of serotonin and several other neurotransmitters. Methylation is needed for the synthesis of acetylcholine and for other aspects of the metabolism of the neurotransmitters. In order to straighten out the entire neurotransmitter mess in ME/CFS, the methylation cycle block needs to be lifted.

Best regards,

Rich

It's surprising that ssri's worked so poorly for CFS. I took them at some point and had a decent reaction for depression and fatigue. Still, I do think lifting the p.m.b. would be the ultimate fix. I am definitely working on that, although my protocol seems to be less effective than in the beginning, and I am not sure why that is. Fixing the gut the old fashioned way with diet seems to be the only thing I can do.
Thanks
Liz

 

[redo]

Autism is interesting to me because I've got many clearly autistic symptoms after I got ill. And adult onset autism interests me because of that.

http://www.neurotransmitter.net/autismclostridia.html
Children with autism had 9 species of Clostridium not found in controls, whereas controls yielded only 3 species not found in children with autism. In all, there were 25 different clostridial species found. In gastric and duodenal specimens, the most striking finding was total absence of non-spore-forming anaerobes and microaerophilic bacteria from control children and significant numbers of such bacteria from children with autism. These studies demonstrate significant alterations in the upper and lower intestinal flora of children with late-onset autism and may provide insights into the nature of this disorder.

Fascinating.

If these results hold true, then it's either the thing behind autism causing the gut to get out of balace, and it's just a symptom of autism. Or the gut out of balance is what's causing late onset autism. I've seen clostridia strains mentioned several times before with regards to autism.

 

[redo]

"S. boulardii has been shown to be non-pathogenic, non-systemic (it remains in the gastrointestinal tract rather than spreading elsewhere in the body), and grows at the unusually high temperature of 37C."
Hmmm. This is a description of a probiotic used in on of the fecal transplant studies. Interesting to see that it's mentionedcspecifically that this strain does not enter the bloodstream (or spread to elsewhere in the body)

 

[Glynis Steele]

Hi Redo,

I think S Boulardii can translocate, but it is usually seen when administered to critically ill patients.

Abstract
Saccharomyces boulardii (Sb) is a particular strain of Saccharomyces cerevisiae (Sc). This viable yeast is used in intensive care adult patients, delivered in packets of 500 mg, for preventing diarrhea associated with antibiotics or enteral feeding at a regimen of 1-2 g/day. Between June 1996 and October 1998, seven cases of fungemia with Sb occurred in a 12-bed intensive care unit (ICU). All the patients concerned were severely ill patients, mechanically ventilated, treated by broad spectrum antibiotics with central venous catheter and were pretreated with Sb, except for one patient. In this study, Sb was identified by specific mycologic methods and confirmed the genomic identity between isolates of blood culture and yeasts from the treatment packets, contrary to a few other reports concerning Saccharomyces species published in international literature. The hypothesis discussed for explaining these cases of Sb fungemia are: (1) an intestinal translocation of Sb administered at a high dosage in severely ill patients, (2) a contamination of the central venous catheter, especially in the patient not pretreated with Sb and (3) a massive colonization of critically ill patients by the yeast as has been reported for Candida species. We note that cases of fungemia with Sc and Sb have become more and more frequent in the international literature during the last 10 years and we do not recommend administering Sb treatment in critically ill patients.

http://www.springerlink.com/content/djrq3k2bgkgu4qvw/

Glynis

 

[redo]

Yes, I think you're right. My point was that I found it usefull to know that they specifically needed to say that that strain didn't translocalte (implied, other strains might very well translocate).

So. If we've got a unidentified pathogen causing CFS in the gut, it wouldn't be unliky, given that it is a "gut pathogen", that it would enter the blood stream.

 

[Waverunner]

Of all probiotics I ever took S. boulardii was the worst. I don't know why but there is so much we don't know yet. However I still think that the cause of CFS highly correlates with an impaired intestinal system.

 

[MonkeyMan]

If we've got a unidentified pathogen causing CFS in the gut, it wouldn't be unliky, given that it is a "gut pathogen", that it would enter the blood stream.

I've been battling CFS for almost 27 years, and am convinced the root of the problem is a gut pathogen. My problems all started when I was taking broad-spectrum antibiotics for acne, leading to intestinal candidiasis, which I was able to overcome thanks to the Yeast Connection by William Crook. Although candidiasis is no longer a problem for me, I am still tired and brain-fogged after every meal I eat. (I feel relatively normal until I eat something (anything at all), and then I start to feel progressively more lethargic, brain-fogged, and tired. The symptoms peak a few hours after my meal and then begin to recede).

And if I eat and then go to sleep, I feel AWFUL when I wake up, especially if I eat hard-to-digest foods (such as foods high in fiber). What clearly appears to be happening is that some kind of organism in my gut is feasting on the undigested food particles and releasing toxins in the process. If I'm awake while digesting my food, this still happens, but to a much lesser degree.

I suspect the pathogen is either an enterovirus (like Dr Chia suggests) or some kind of bacteria.

Drew

 

[Sushi]

I've been battling CFS for almost 27 years, and am convinced the root of the problem is a gut pathogen.

I suspect the pathogen is either an enterovirus (like Dr Chia suggests) or some kind of bacteria.

Drew

Hi Drew,

I am just finishing my first round of ABX for the specific anaerobic bacterial infection KDM found in my gut (at high levels) and I definitely feel better for it. After this one, I have 2 more rounds of ABX followed by VSL-3 for the rest of the month.

Best wishes,
Sushi

 

[MonkeyMan]

Hi Drew,

I am just finishing my first round of ABX for the specific anaerobic bacterial infection KDM found in my gut (at high levels) and I definitely feel better for it. After this one, I have 2 more rounds of ABX followed by VSL-3 for the rest of the month.

Hi Sushi

That is very interesting, and I'm glad to hear you're feeling better! I remember a couple of years ago my dentist put me on an antibiotic for a week or so, when I had a root canal procedure. I remember feeling better too! However, since all my problems started when I was taking tetracycline 27 years ago, I'm terrified of taking ABX for more than a short amount of time. Perhaps it's safe if you then take the probiotics, though? I wish I could see KDM ... I have enormous respect for him but his office is a wee bit too far to travel (I'm in the US). I see you're in Albuquerque .. did you fly to Holland to see him?

Cheers,
Drew

 

[Sushi]

Hi Sushi

I'm terrified of taking ABX for more than a short amount of time. Perhaps it's safe if you then take the probiotics, though? I wish I could see KDM ... I have enormous respect for him but his office is a wee bit too far to travel (I'm in the US). I see you're in Albuquerque .. did you fly to Holland to see him?

Cheers,
Drew

Hi Drew,

I am not taking broad spectrum ABX, but one's that target a specific anaerobic infection and release in the needed place. KDM tries to match the probiotic he gives with your gut profile. He is also giving me prescription pancreatic enzymes and some other supplements.

Yes, I flew from Albuquerque to Brussels to see him. I saw him twice before returning to the States in order to have done some months of treatment before seeing him again. I stayed with another patient in Spain.

I was definitely a very hard trip! But I am glad I did it as KDM implements the latest research as soon as possible (and safe!) into his practice and is in touch with all the "main players--" both as a researcher and clinician.

European doctor's fees are much lower than the States, and the labs are a bit cheaper too. The big test was the energy to do it. I booked a wheelchair for the flights. It was hard, but was doable for someone who can "go out" a couple of times a week."

Getting all the elements of the protocol into place is another big job. Hey, sick people shouldn't have to do this!

Best wishes,
Sushi

 

[MonkeyMan]

Yes, I flew from Albuquerque to Brussels to see him.

That's amazing, Sushi!! I am very impressed with your willingness to fly half-way around the world to see him.

Thank you for your thoughtful posts; they've given me a lot to think about. What was the name of the test that KDM ran on your gut? I'm wondering if I can get that done here.

Cheers,
Drew

 

[Sushi]

That's amazing, Sushi!! I am very impressed with your willingness to fly half-way around the world to see him.

Thank you for your thoughtful posts; they've given me a lot to think about. What was the name of the test that KDM ran on your gut? I'm wondering if I can get that done here.
Cheers,
Drew

KDM tests your gut in many, many ways and tailors the tests he gives to your medical history. Everything from anaerobic stool tests (which he orders for most--not available in the US as far as I know), to stomach biopsies in some. I must have had about 6 tests that measured some form of gut status, and many of them were complex, so I can't really say that he prescribed one or two tests.

He decides on the tests from years of experience in treating ME/CFS patients and looking at your previous tests, your symptoms etc.

Wish I could be more helpful! You can order the anaerobic stool test from RedLabs in Brussels if you are willing to pay the FedEX--but you would need a doctor who could read it well.

Best wishes,
Sushi

 

[lizw118]

KDM tests your gut in many, many ways and tailors the tests he gives to your medical history. Everything from anaerobic stool tests (which he orders for most--not available in the US as far as I know), to stomach biopsies in some. I must have had about 6 tests that measured some form of gut status, and many of them were complex, so I can't really say that he prescribed one or two tests.

He decides on the tests from years of experience in treating ME/CFS patients and looking at your previous tests, your symptoms etc.

Wish I could be more helpful! You can order the anaerobic stool test from RedLabs in Brussels if you are willing to pay the FedEX--but you would need a doctor who could read it well.

Best wishes,
Sushi

Hey Sushi
I am so glad the protocol is helping! What types of symptoms do you notice that are getting better? I wish you continued healing!
Liz

 

[Sushi]

Hey Sushi
I am so glad the protocol is helping! What types of symptoms do you notice that are getting better? I wish you continued healing!
Liz

More stamina is probably the biggest thing. If I need to, I can function all day doing stuff for a week at a time. Just did that, so I'll need a day "living on my bed" i.e. laptop there, papers there, meals there -- but still doing things. But I usually recover in a day. I can do a fairly intense pilates class without PEM if I "go easy" the next day. Stuff like that.

I got a cold/fever for a few days--a triumph for me. I sleep as long as I need to and (after a long process of waking up!) usually feel OK.

I have about one day a week where I feel GcMAF "side-effects"--they vary, lately it is achy legs. But the side-effects have diminished and KDM lowered the dose to half a vial to get the right balance.

Everyone seems to need to "hit" the dose that is right for them.

It is slow progress but noticeable. But if the theory is true, that our "symptoms" are not coming so much from XMRV but from all the co-infections that have become chronic, it is going to take time (even after XMRV is "turned off") to get rid of infections, normalize the gut and the immune system and all the rest of the biochemistry that has been screwed up.

So, I am OK with slow!

Best,
Sushi

 

[redo]

I've been battling CFS for almost 27 years, and am convinced the root of the problem is a gut pathogen. My problems all started when I was taking broad-spectrum antibiotics for acne, leading to intestinal candidiasis, which I was able to overcome thanks to the Yeast Connection by William Crook. Although candidiasis is no longer a problem for me, I am still tired and brain-fogged after every meal I eat. (I feel relatively normal until I eat something (anything at all), and then I start to feel progressively more lethargic, brain-fogged, and tired. The symptoms peak a few hours after my meal and then begin to recede).

And if I eat and then go to sleep, I feel AWFUL when I wake up, especially if I eat hard-to-digest foods (such as foods high in fiber). What clearly appears to be happening is that some kind of organism in my gut is feasting on the undigested food particles and releasing toxins in the process. If I'm awake while digesting my food, this still happens, but to a much lesser degree.

I suspect the pathogen is either an enterovirus (like Dr Chia suggests) or some kind of bacteria.

Drew

The last time I took tetracyclines (doxycycline to be specific), I got worse too, rapidly. I think the fact that you've got worse from a particular antibiotic is a good clue, and I think that also strongly indicate that what gives the symptoms is a living microbe, instead of a virus. I think the enterovirus (or perhaps xmrv, or other) is what causes us to not be able to control the gut as we should, so when otherwise harmless "stressors" come, such as acne abx, it might end in total havoc. I think that's because of overgrowth of unwanted microbes. If I were to give you a patient to patient advice, I would say get back to that dentist, and hear if he remembers what abx he/she gave you. Get back on that for a couple of months, and see what happens.

I also think you seem like a good candidate for a fecal transplant, although that's pretty experimental still.