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Gut idea?

ljimbo423

Senior Member
Messages
4,705
Location
United States, New Hampshire
Thanks for posting this article. There are many research papers that show viral infections, like influenza cause significant gut dysbiosis.

So I just read this about the flu virus and why we feel so sick and have gut symptoms with it. Really interesting. Could this immune stuff be why our guts are messed up?

My feeling is, these viral infections that so often trigger ME/CFS, cause dysbiosis and increase intestinal permeability (leaky gut) and this is what causes ME/CFS. Several leading ME/CFS researchers do also-

This is what Derya Unutmaz, who is a leading ME/CFS researcher, says about the cause of ME/CFS-

Putting the patient back together

Unutmaz hypothesizes that ME/CFS is caused by a change in a patient’s microbiome after an infection. Our microbiome consists of our microbes—trillions of bacteria, viruses, and fungi that are living in and on our bodies.

A misbalance in our microbes can change the makeup of our entire microbiome, which triggers an inflammatory response and causes the immune system to perceive that there is still a danger in our bodieseven when an infection is long gone.
Source

This is what Dr Neil McGregor, another leading ME/CFS researcher says about the guts role in this illness.

Early last year, he did a talk on his research that's now on YouTube. He talked about how big a role gut barrier dysfunction plays in ME/CFS, quote- "This barrier dysfunction appears to be a major precipitater of what else is going on" in ME/CFS.

Meaning the gut barrier dysfunction comes first. He also says that, quote- "Gut barrier dysfunction appears to be a major component in the maintenance of this sort of issue" meaning (ME/CFS).

Source

This is what ME/CFS researcher Chris Armstrong posted here at Phoenix Rising-

Bacteremia means lipopolysaccharides and bacterial toxins from the gut are getting into the bloodstream-

Well we all experience a bacteremia when we exercise. The type of bacteria that enter your bloodstream are usually quite controllable by your immune system but if your gut is further compromised they may release more bacteria into your blood or more pathogenic species or your immune system may already be depleted. This is the concept for the chronic sepsis or SIRS and this is what I think may be behind PEM.
Source
 
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ljimbo423

Senior Member
Messages
4,705
Location
United States, New Hampshire
So how to fix it @ljimbo423 ? Any ideas

It's not easy in my experience. Although I have more than doubled my energy and PEM window by treating my gut.

I've been treating my gut for almost 3 years. I get flu-like flares when I take higher doses of antibiotic herbs like oil of oregano etc. This, I feel, is my main obstacle to recovery.

I need to take probably 2-3 times the dosage I'm taking to beat this dysbiosis and leaky gut but I can't tolerate that high of a dose. I wish I had an easy simple answer for you but I don't.

I'm thinking about pulsing pharmaceutical antibiotics with the herbs I'm taking to speed things up but that could to more damage. Although, that is what Ken Lassesen from cfsremission.com did to recover.

What I have done was to take Rifaximin, 2 courses, with a low carb diet and antibiotic herbs. That just isn't enough to beat this dysbiosis and the well established biofilms these inflammatory bacteria often live in.

Do you tolerate antibiotic herbs, like oil of oregano etc, well?
 

Rufous McKinney

Senior Member
Messages
13,171
It's not easy in my experience. Although I have more than doubled my energy and PEM window by treating my gut

Flash back 55 years- one is a child, doubled over in the back seat of the car, severe IBS symptoms and your 7.

Of course we didn't call it that. "Colitis attack"....it was called ...

****

Work on gut is- the primary activity for years. Its working Ok one day, horribly the next. Yada Yada.

****

8 weeks after the severe Stomach Flu- my digestive system is slightly improving.....and the chinese herbs for IBS-d are again helping....

The fact that conditions can revert in 24 hours or less- continues to baffle me.
 

EddieB

Senior Member
Messages
604
Location
Northern southern California
I feel like I've exhausted everything.... I get respite by using a supplement, and then everytime it stops working...
We’re in the same rut. At least somethings have worked for you, if even temporarily. Nothing helps me. I’m trying lactoferrin right now, but as usual, feel much worse. And I can’t tell if it’s the “worse before better” or just plain wrong.

The fact that conditions can revert in 24 hours or less- continues to baffle me.
Exactly. What is the variable?

I wish I had better answers to offer. As with myself, all there is to go on is the trials and experiences of others, doctors are of little help. Do you feel that your illness may have started with a virus that became chronic? For me, that’s a yes. If so, that would explain why our systems cannot balance and heal, even when we do all the “right stuff”. If there is anything to this enterovirus theory, then maybe that’s what we have.

I should get some answers next week as to whether or not I can get this special blood testing for enterovirus done. More on that later. Hang in there, we’ll get thru....
 

JES

Senior Member
Messages
1,318
I feel like I've exhausted everything.... I get respite by using a supplement, and then everytime it stops working...

Yep, same here. I recently decided to retrial LDN and had a nice response to a higher dosage, so I thought I maybe just took it in the wrong regime. However, now it looks like the effect is diminishing after a couple of weeks.

It's quite a demoralizing thing to go through the same process of finding something that truly seems to work (not just placebo) and later you end up in the same hole just dug yourself out of. Based on this response alone (if we ignore all other evidence), it would seem most intuitive to me that there's a faulty signal originating e.g. from the brain or immune system that goes on to shut down metabolism, mitochondria and driving all body functions to the wrong direction. When you give this faulty system a "jolt" through a medication or supplement (doesn't have to be any pathogen targeted treatment), the system sometimes temporarily gets reset back to more normal, but eventually falls back to ill state.
 

EddieB

Senior Member
Messages
604
Location
Northern southern California
When you give this faulty system a "jolt" through a medication or supplement,
I think it can get weirder that that...

About 9 years ago, one of my tonsils got huge, the other stayed perfectly normal. They took both out, and it was probably the worst thing I’d ever been through. But as everything healed, I noticed I felt better than I’d been in years. Fatigue, PEM, stomach problems, almost gone. Doctors said I “probably had a deep rooted infection” (something I’d been previously told was not possible). It was too good to be true. Then, about 4 months later, everything started coming back, and within 6 months I was right back where I started, just with no tonsils.

I think that anything that has the ability to “shake the box” can reset the system. This make it very confusing to know what helps and what doesn’t.

One of the main theories I’m chewing on, is this ability our bodies have to divert or “hide” iron from circulation during times of illness. If this system were to go bonkers, and block iron from reaching our cells for extended periods, we’d feel like crap. Then when a medicine or some other influence triggers a reset, the iron is released, until the cycle starts over again. ME/CFS sure sound like anemia at first glance. And because we have plenty of iron stashed away, blood tests might just look normal. For example, I have high ferritin (storage) but low normal serum. But whether or not that iron is getting to where it’s supposed to is unknown. Curious to know what others think of this.
 
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ebethc

Senior Member
Messages
1,901
@Hopeful1976

adding on to what @ljimbo423 said...

there's no shortage of variations on low carb / keto diets, but I think the SCD guidelines are a good place to start if you're overwhelmed or need specific information.... http://www.breakingtheviciouscycle.info/legal/listing/

I also take Betaine HCL to help digest meat (I found that i need meat b/c if I'm not getting energy from carbs I def need the aminos in meat)...It's made a HUGE diff for me, and low carb didn't work until I found a way to help digest meat.. Unfortunately, you only find these little tweaks via trial and error, but they make all the difference.. I like Thorne Betaine HCL w Pepsin, and the Biotics one, too.

I do carb cycling which is adding slightly higher carbs 1-2 days a week. Mostly 20-50g carbs per day, then 75-100g carbs per day 1-2 days per week w adequate protein and monounsaturated fats (usually olive oil)..

enzymes help a lot of ppl, too... I like bromelain and also formulas (wobenzyme, vascuzyme, and bio-zyme by integrative therapeutics)... fyi, these are expensive except for bromelain, and, 2nd, I have a lot of joint/muscle pain/sinus pain, so these enzymes help w those issues... You may not need the enzymes... Also, lemon juice in water helps enzymatically, too, as does zinc. Lemon & zinc are cheap.

for healing leaky gut, a lot of formulas are expensive BUT you can buy Throat Coat tea which is cheaper by comparison and has good ingredients for healing leaky gut (slippery elm, licorice, marshmallow)
 
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Rufous McKinney

Senior Member
Messages
13,171
f there is anything to this enterovirus theory, then maybe that’s what we have.

It will be great if you can get those tests and figure out if entervirus is involved. I've never been tested for that one......Are biopsies involved? It seems that a concern is these virus are not longer circulating in the blood..but parked somewhere where they are't being detected.

"have Chronic Eppstein Barr..." or something..has been the excuse for decades here.

But 2 years ago I had a series of severe intestinal "flu"s.....and seem to have gotten FAR worse over that course in time..so I"m really curious bout that one as well.

And couldn't we have had exposure to both critters?
 

EddieB

Senior Member
Messages
604
Location
Northern southern California
It will be great if you can get those tests and figure out if entervirus is involved.

My gastro knows Dr Chia, and said he would do the biopsy. I figured I’d start with the blood test first and go from there. I have no idea if this is going to go anywhere, or if I’ll get my case reviewed by Dr Chia. Will require some divine intervention...
 
Messages
51
This is what Dr Neil McGregor, another leading ME/CFS researcher says about the guts role in this illness.

Early last year, he did a talk on his research that's now on YouTube. He talked about how big a role gut barrier dysfunction plays in ME/CFS, quote- "This barrier dysfunction appears to be a major precipitater of what else is going on" in ME/CFS.

Thanks for mentioning the research that Dr Neil McGregor has been doing. I remember reading about the work that he was doing, together with other researchers in the 1990s. (I was diagnosed in 1994, and tried to read all that I could about this baffling illness).

So, he has been involved in this area for a very long time and I feel that he is really close to solving what causes ME/CFS. At the end of the talk he says that his research needs money to fund more studies, and this is unfortunately not surprising.
 

Hopeful1976

Senior Member
Messages
345
I want to heal my gut barrier but I can't take l glutamine - makes me very gittery.. is there anything else that works well?

Thanks to everyone that has commented too. You are all amazing. I can't wait until we are all healed, we deserve it more than anyone I know!
 

Hopeful1976

Senior Member
Messages
345
It's not easy in my experience. Although I have more than doubled my energy and PEM window by treating my gut.

I've been treating my gut for almost 3 years. I get flu-like flares when I take higher doses of antibiotic herbs like oil of oregano etc. This, I feel, is my main obstacle to recovery.

I need to take probably 2-3 times the dosage I'm taking to beat this dysbiosis and leaky gut but I can't tolerate that high of a dose. I wish I had an easy simple answer for you but I don't.

I'm thinking about pulsing pharmaceutical antibiotics with the herbs I'm taking to speed things up but that could to more damage. Although, that is what Ken Lassesen from cfsremission.com did to recover.

What I have done was to take Rifaximin, 2 courses, with a low carb diet and antibiotic herbs. That just isn't enough to beat this dysbiosis and the well established biofilms these inflammatory bacteria often live in.

Do you tolerate antibiotic herbs, like oil of oregano etc, well?
@ljimbo423 thanks for your info - I can take oregano, its something that always helps, but like you, I can't take higher doses, else I feel flu like and sooo exhausted. Im also worried to take it long term in case I damage myself??
 

knackers323

Senior Member
Messages
1,625
I myself get improvement from diet but if dysbiosis and gut barrier function were the sole cause of our symptoms, fasting or an elemental diet, possibly with the addition of antibiotics should quickly test the theory shouldn’t it?
 

ljimbo423

Senior Member
Messages
4,705
Location
United States, New Hampshire
I can take oregano, its something that always helps, but like you, I can't take higher doses, else I feel flu like and sooo exhausted. Im also worried to take it long term in case I damage myself??

I really don't know about the long term effects of oil of oregano. I've seen research that says it's not a problem and some that says it can be. Rotating herbs would probably be best.