Fixing Leaky Gut Helps ME/CFS, and Sometimes Achieves Full Remission

[PeterPositive]

Peter,

I am not expert enough to give a 'super authoritative' answer but a couple of obvious things spring to mind. First even in healthy people a sudden massive increase in fibre can cause severe abdominal pain - any change should be gradual. Second many products with Gluten also contain a lot of vitamin B1 - it might be worth supplementing that for a month to see what happens.

Leo

Hi, Leo
switching to a non gluten diet can be dramatic and I did not do it gradually, which easily explains the problems.

As regards B1, good point. Didn't know about the connection with gluten products. In any case my B complex has quite a lot of active B1 (25mg) and it's sublingual so I should be covered.

cheers

 

[MeSci]

Hi, Leo
switching to a non gluten diet can be dramatic and I did not do it gradually, which easily explains the problems.

As regards B1, good point. Didn't know about the connection with gluten products. In any case my B complex has quite a lot of active B1 (25mg) and it's sublingual so I should be covered.

cheers

Some people are sensitive to buckwheat. I seemed to react to it, so cut it out. Some people don't seem to tolerate some other things that may be used to substitute for grain, such as legumes. I try not to have too much of those. So maybe if you don't improve (or get worse) you could search for info on things that you have increased or substituted so see if it is common to be sensitive to them.

 

[end]

Very interesting thread. I am slowly reading through the whole discussion one bit at a time.
Currently I am dealing with major digestive issues, even though the "Comprehensive Stool Analysis / Parasitology" lab from Great Plains didn't report major disasters.

The main issues from the test are:
- moderately imbalanced flora (no dysbiotic flora though, which is weird given that I am pretty gassy )
- very low sIgA = 11.2 (range: 50-204 mg/dL)
- Lots of Blastocystis hominis

All other inflammatory markers etc are all in range, so it seems I am dealing with Blasto an possibly some SIBO, even though I haven't done a test for that.

Blastocystis seems a bad beast to treat As far as I can see there's only S.Boulardii among non-drug treatments, but unfortunately I have pretty bad reactions even to low doses of any kind of yeast, including Boulardii and Cervisiae...

I am now trying to help the gut with GSE, Zinc Carnosine and Glutamine and maybe retry Boulardii when I get some improvements.
Oral glutathione seems also to be helpful, against all expectations and what I've read around here. Go figure.

Questions:
About ZInc Carnosine, I've read it can possibly lower stomach acid... which would be a problem for me, since I already have low HCL. Do you have any experience with this effect? What is a safe dosage?
Since Zinc may deplete copper I'd like to avoid causing other harm. (Which makes me wonder why they don't add a tiny bit of copper to zinc supps to avoid this sort of issues)

Colostrum: being a derivate of dairy does it contain lactose? That's another no-no for me even in minute doses

Thanks

Peter, if you have severe Blasto chances are you have Leaky Gut Syndrome which tends to make you react to ANY substance ingested(Dr Natasha Campbell-McBride GAPS)hence the reason for "rotation diets" some use. There are also some(Dr Kevin Cahill)who believe parasites do not invade by them selves "parasites bring friends"

Like you my sIgA is near non-existant in stool and saliva. Very low sIgA is often linked to Leaky Gut Syndrome so like I have done multiple times testing with the lactulose/mannitol or Intestinal Permeability(indicated severe IP in myself)test might be worthwhile

A note on fiber Dr Leo Galland in his book "The Four Pillars Of Healing" has said cellulose is the most effective/tolerated fiber to use in relation to intestinal permeability. With personal experience I can more then agree with his Observations. He has helped formulate several intestinal permeability products which some include cellulose for Nutricology he is also considered the world's leader in intestinal permeability and related illness

There are of course conflicting views and what I have learnt from this forum is that what works in one patient does NOT always work in another

Good luck

 

[PeterPositive]

Peter, if you have severe Blasto chances are you have Leaky Gut Syndrome which tends to make you react to ANY substance ingested(Dr Natasha Campbell-McBride GAPS)hence the reason for "rotation diets" some use. There are also some(Dr Kevin Cahill)who believe parasites do not invade by them selves "parasites bring friends"

Yeah, I have no doubt that my poor intestine is pretty leaky... sometimes it feels like it has pretty big holes in it

Years ago I was having lots of difficulties taking oral magnesium in any form ( I tried 10 at least ) with dosages higher than 100mg (which isn't much). It would cause lots of irritation, like putting salt on a bleeding wound.

I then was suggested to try foot baths and they worked a little bit better but, to my horror, I would often times get a salty taste in my mouth after soaking for more than 6-7 minutes! I have no idea how that happens but it also happened when I was taking a stroll on the beach soaking my feet in the salty sea water.
My doc suggested that it might be due to a leaky gut. I guess it's more colander gut!

 

[manna]

so im guessing then that leaky gut is basically a loss of the mucous membrane that coats the whole interior of the gut and that nowt can pass through that without being acted on by the beneficial microbes?

 

[PeterPositive]

so im guessing then that leaky gut is basically a loss of the mucous membrane that coats the whole interior of the gut and that nowt can pass through that without being acted on by the beneficial microbes?

Yes, that's how I get it. Also the intestinal walls aren't no longer working well as a barrier against possibly harmful substances. For example it seems that certain peptides from the breakdown of gluten and casein can get into the bloodstream and trigger auto-immune reactions, etc...

 

[manna]

Yes, that's how I get it. Also the intestinal walls aren't no longer working well as a barrier against possibly harmful substances. For example it seems that certain peptides from the breakdown of gluten and casein can get into the bloodstream and trigger auto-immune reactions, etc...

yes i was actually going to mention whole proteins entering the system due to loss of membrane covering. whole proteins entering the spinal fluid, which is "decanted" from the blood i believe, is potentially one of the causes of neuro-inflammation. also, it seems, any poorly digested starches will also degrade to acids which enter they system through the leaky gut promoting further loss of health. vicious cycle once you're locked in as potentially most things you eat will add to the problem.
---
i always recommend the "hay" food combining diet. no concentrated starches with concentrated proteins. all foods are allowed in this diet so you have to tailor it. i think diet is key for me.

 

[MeSci]

so im guessing then that leaky gut is basically a loss of the mucous membrane that coats the whole interior of the gut and that nowt can pass through that without being acted on by the beneficial microbes?

The first posting in this thread defines leaky gut and provides a good background. The holes are microscopic.

 

[end]

The first posting in this thread defines leaky gut and provides a good background. The holes are microscopic.

Very true @Hip does a great job in his opening post describing IP

I would encourage re-reading the beginning of this thread

A point worth mentioning is that the "carrier proteins" with-in the GUT lining are also damaged with IP which often results in mineral malabsorption. At the same time like previously eluded to, there is an increased absorption of "toxins" along with the decreased absorption of nutrients sets the stage for a cascade of negative effects

Holistically speaking "Deficiency and Toxicity" has been implicated in many serious degenerative conditions

Although not very detailed at all this photo does help visualise the GUT lining

 

[end]

yes i was actually going to mention whole proteins entering the system due to loss of membrane covering. whole proteins entering the spinal fluid, which is "decanted" from the blood i believe, is potentially one of the causes of neuro-inflammation. also, it seems, any poorly digested starches will also degrade to acids which enter they system through the leaky gut promoting further loss of health. vicious cycle once you're locked in as potentially most things you eat will add to the problem.
---
i always recommend the "hay" food combining diet. no concentrated starches with concentrated proteins. all foods are allowed in this diet so you have to tailor it. i think diet is key for me.

Dr Natasha Campbell-McBride does a wonderful job at explaining exactly why starches and other foods are detrimental to the GUT in her book "Gut And Phycology Syndrome" highly recommend reading

I have always found "food combining" helpful also

 

[Gingergrrl]

Great thread and I will soon be doing the Leaky Gut test with my ND. I suspect that it may be part of my problem b/c I have major stomach/digestive issues. Thanks for all the info.

 

[Adlyfrost]

@Adlyfrost

I could not agree more on multiple points. I have come to the same basic conclusion, as my CFS mainly having a viral and/or intestinal viral infection trigger and/or cause.

I think it's also interesting that you haven't been on the forum since late last year - may indicate your feeling better

@end : Yes, I have been feeling better- not without occasional set-backs, but with tremendous improvement! I stand by everything I have said in this forum- esp. with the chicken broth and nystatin. I am writing a mini-book about the protocol that is healing me and helping me manage, at least until there is an anti-viral drug to eradicate this thing once and for all. I will let you know when I have it published on Amazon. Good luck to everyone here and God bless!

 

[Gingergrrl]

It turns out that I do have leaky gut (who knew?) and my husband and ND feel that this is a major piece of the CFS puzzle. They said that 80% of our immunity comes from our gut so if bad things are leaking out, it could be making us sick. At first I thought this was silly and unrelated b/c my problems are viral, mitochondria/energy not working, and cardiac/tachycardia/POTS related. I felt my stomach issues were minor in comparison.

However, now I wonder if the viruses leak out of your gut into the bloodstream and affect other organs. I am now doing multiple stomach treatments with my ND and this thread has further enforced that I am on the right track. Thank you for the info.

@end or @Adlyfrost , can you explain what you meant about chicken broth and nystatin? I am confused (and intrigued!)

 

[end]

@Gingergrrl43

There's info here on putting a bone broth together - http://forums.phoenixrising.me/index.php?threads/bone-broths.27821/#post-425186

There's info regarding GAPS like previously mentioned and the connection with our GUT and our physiology here - http://www.doctor-natasha.com

McBrides book "Gut And Phycology Syndrome" like previously mentioned is a recommended read

Gut And Physiology Syndrome is also currently being written

Nilstatin is an antifungal which has been helpful for a lot of people. Each practitioner/patient has there own method and/or theories regarding yeast and Gut ecology and/or treatments

 

[Adlyfrost]

It turns out that I do have leaky gut (who knew?) and my husband and ND feel that this is a major piece of the CFS puzzle. They said that 80% of our immunity comes from our gut so if bad things are leaking out, it could be making us sick. At first I thought this was silly and unrelated b/c my problems are viral, mitochondria/energy not working, and cardiac/tachycardia/POTS related. I felt my stomach issues were minor in comparison.

However, now I wonder if the viruses leak out of your gut into the bloodstream and affect other organs. I am now doing multiple stomach treatments with my ND and this thread has further enforced that I am on the right track. Thank you for the info.

@end or @Adlyfrost , can you explain what you meant about chicken broth and nystatin? I am confused (and intrigued!)

@Gingergrrl43 : I have found drinking chicken broth on empty stomach gets rid of the virus when it is hanging around in the mild chronic stages but it only works for me when I completely avoid sugar, most solid food, or any fruits and veggies with natural sugar. It takes 1-2weeks to see results for me, and must be kept up daily indefinitely.

The broth is simple- get a whole cooked chicken, put it in a pot with water and a little onions and celery for flavor, boil and after 2 hours start drinking. Simmer for a total of about 7 hours (doesn't have to be at once) or until the meat tastes like cardboard and the cartilage is liquified- drink throughout cooking and add water when needed. (You can add spices of course too).

The nystatin I discovered when I decided to make my geographic tongue an indicator of gut health. For example, if my tongue was covered in white gunk with red inflamed lines beneath, I figured my gut may look similar. Nystatin in conjunction with broth greatly helped but it took months to get my tongue to clear up before I could go off nystatin.

I may have to start Nystatin again because I am very susceptible to yeast in the gut- which impairs the body's ability to fight the enterovirus(es), and yeast can cause CFS in its own right.

I try to take the broth daily. If I skip 2 days the nausea starts coming back, I get panic attacks at night- after a week the malaise and flu-like symptoms come back. For me chicken broth is my lifeblood. However when I had the virus in more acute stages with fever and symptoms where I was bed-ridden, I could feel the chicken broth doing very little. At that point I probably needed antivirals but in absence of a doctor took immune modulators which stimulated an autoimmune response and caused other problems. It took months to get out of bed.

I hope I never go back to that again. So far the chicken broth and nystatin seem to be the best preventatives (as long as I also do not eat much solid or any sweet food). Also antiviral supplements like oregano oil and vitamin C.

 

[Gingergrrl]

@Gingergrrl43 : I have found drinking chicken broth on empty stomach gets rid of the virus when it is hanging around in the mild chronic stages but it only works for me when I completely avoid sugar, most solid food, or any fruits and veggies with natural sugar. It takes 1-2weeks to see results for me, and must be kept up daily indefinitely.

The broth is simple- get a whole cooked chicken, put it in a pot with water and a little onions and celery for flavor, boil and after 2 hours start drinking. Simmer for a total of about 7 hours (doesn't have to be at once) or until the meat tastes like cardboard and the cartilage is liquified- drink throughout cooking and add water when needed. (You can add spices of course too).

The nystatin I discovered when I decided to make my geographic tongue an indicator of gut health. For example, if my tongue was covered in white gunk with red inflamed lines beneath, I figured my gut may look similar. Nystatin in conjunction with broth greatly helped but it took months to get my tongue to clear up before I could go off nystatin.

I may have to start Nystatin again because I am very susceptible to yeast in the gut- which impairs the body's ability to fight the enterovirus(es), and yeast can cause CFS in its own right.

I try to take the broth daily. If I skip 2 days the nausea starts coming back, I get panic attacks at night- after a week the malaise and flu-like symptoms come back. For me chicken broth is my lifeblood. However when I had the virus in more acute stages with fever and symptoms where I was bed-ridden, I could feel the chicken broth doing very little. At that point I probably needed antivirals but in absence of a doctor took immune modulators which stimulated an autoimmune response and caused other problems. It took months to get out of bed.

I hope I never go back to that again. So far the chicken broth and nystatin seem to be the best preventatives (as long as I also do not eat much solid or any sweet food). Also antiviral supplements like oregano oil and vitamin C.

@Adlyfrost Thanks for all the info and my husband cooks bone broth from grass fed beef which sounds similar to what you do with the chicken broth.

 

[Adlyfrost]

Most recent gut-mopping regimen: Along with chicken broth first thing every morning, I do this nightly gut-mopping that I concocted that really helps insomnia.

5 grams psylium fiber
*tsp fennel powder
*tsp ginger "
*tsp triphala "
3/4 tsp coral calcium (to prevent acid reflux)
1-2 TBSP flax oil
tsp vindanga, aka, embelia ribes (availble at banyan botanicals)
optional: 1/2 teaspoon bentonite

Mix with water and drink right away.

*availbale cheap at indian grocer

Yes it tastes bad and yes it is dehydrating, esp with bentonite. Must take full 16 oz liquid after drinking mixture, with another glass of water by nigh stand. And yes it is constipating sometimes, but I am constipated without it too. Gentle laxative might be necessary in morning. Magnesium and multimins 1/2 hour before help too. But it is worth it!!!

I think this is a turning point!!! Starting to really feel better. The broth and anti-vitals helped heal me of the "can't get out of bed" viral symptoms. Now getting my life back is the real challenge- mitochondria support, hormone support and ALWAYS gut issues. Getting that energy to thrive, and not just exist!

One thing this mixture is helping with is morning cortisol- able to pull myself out of bed in the morning. It is still difficult, but I am making progress.

 

[Mij]

I cook a whole grass fed chicken in my slow cooker for 5.5hrs on low setting once a week. I also add a stick of celery(natural sodium). I drink this with a nice amont of sea salt in the morning. I think it might help with OI or low blood pressure symptoms too.

 

[Mij]

Hey @Adlyfrost Do you know for sure if you have low cortisol in the morning? Or could it be a form of OI that you're experiencing with the "can't get out of bed, viral symptoms"? I get this too and my cortisol is fine in the morning. Love the broth in the morning. Glad you're making progress!

 

[Adlyfrost]

No I do not. Never actually been tested for morning cortisol. BP always on low side but don't think the root of my exhaustion in morning. I wake up with nausea most mornings, like I am on the verge of getting the flu, until I medicate with herbal anti-virals.

I notice that when I get a good night's rest and a literal mopping up of my intestines, my body is not in such a fight mode in the morning, and I do not have the 'hit by a truck' feeling as bad. Getting that good night's rest is so difficult though!!!! Most sleep is unrefreshing, even if it is deep. PWME seem to be stuck in a vicious cycle. So many describe the same thing:

1. wake up exhausted, achey and have sleepiness/malaise all day
2. must rest all day- literally no energy and /or flu symptoms (if you push through it you get really sick)
3. feel a little bit better at night
4. finally get a little energy around sunset, then exhausted again
5. can't sleep until late- feel tired but at the same time mentally/physically revved up at night (even with no TV or mental stimulation)
6. unrestful revved up sleep, or deep sleep that is unrefreshing
7. wake-up tired again (or sleep through 10 back-up alarms)

How to fix this cycle, hmmm.... Let's say the cycle starts with low morning cortisol, for the sake of argument. I am convinced that low morning cortisol is the body's rational response to infection:

If I were my body and fighting constant infection, would I want a morning hormone waking me up and repressing my immune system? Of course not! And that is what coritsol does- slightly depresses immune response, decreases inflammation and gets you going, out of bed. Of course if you have a viral infection your body would not want to do this. It would want a full immune response and to let the body rest during the day.

Perhaps low BP is the result of feedback inhibition of other hormones- a chain reaction of low thyroid and other hormones not set into motion on account of the low cortisol? Not smart enough to understand it- just vague speculation. But I do notice when I treat the gut/viral symptoms I start to make a dent in this horrible cycle!!! And I want so badly to get off this miserable train!!!!!

As I said, I don't know how the low BP ties in but I really think it is a symptomatic by- product of body's response to viral infection and/or incomplete detoxification. However, I do licorice tea with my chicken broth EVERY morning first thing too, and that gives me a big Th1 boost not to mention raising my BP.