How do we know that everyone doesn't have sibo and leaky gut?

[lizw118]

Sometimes I wonder if we gave tests to the healthy people we know, if they would come up positive for sibo. Does anyone know if there have been any tests with control subjects about CFS and gut issues?
Liz

 

[Athene]

Hi,

As far as leaky gut goes, they have definitely done controls and found that CFS and autistic people have leaky gut and healthy controls don't. They measure the presence of substances in the urine.

This organisations was spun off from the University of Sunderland, which did the research
http://www.espa-research.org.uk//

The same research was done independently in Norway but I don't know the links for that. I do know the Norwegian team published a book... anyone know the title?

As far as sibo goes, they have also done research and controls have very little bacteria in the small intestine. There is lots of research on this, it is well established and in lots of research. Most of it done in Germany.

 

[anne_likes_red]

Studies have been done in Australia too. Dr Henry Butt did some studies at Newcastle University (he works, or worked with, Dr de Meirleir a few years back.

It wouldn't surprise me if studies have been done in Japan too.

...If I find any online I'll edit this with links )

 

[ukxmrv]

When the test kit from Dr Demeirlier came out some people with ME bought one for family members. They reported that some non-ME people close to them had worse scores than they did. Just anecdotal evidence of course.

They could be sharing bugs or similar. It may be that the non ME people will go on to develop something else or that the leaky gut problems causes specific things to the PWME and not the others.

Really don't know. I didn't have any stomach issues when I developed ME. These didn't start until well into the disease. Some of the so-called cures for leaky gut just made it worse (but not from Dr DeMeirleir so I don't mean any disrespect to him).

Concentrating on clearing up that ones I have now have done little to improve my functioning. May be a subgroup sort of thing.

XMRV+

 

[lizw118]

When the test kit from Dr Demeirlier came out some people with ME bought one for family members. They reported that some non-ME people close to them had worse scores than they did. Just anecdotal evidence of course.

They could be sharing bugs or similar. It may be that the non ME people will go on to develop something else or that the leaky gut problems causes specific things to the PWME and not the others.

Really don't know. I didn't have any stomach issues when I developed ME. These didn't start until well into the disease. Some of the so-called cures for leaky gut just made it worse (but not from Dr DeMeirleir so I don't mean any disrespect to him).

Concentrating on clearing up that ones I have now have done little to improve my functioning. May be a subgroup sort of thing.

XMRV+

Yeah, this is what I wonder. If I tested my sister, would she have the same bacteria stuff in her small intestine? If so, why am I so much worse than she is? The funny thing is my sister has some of the same symptoms as mine, like POTS, etc, but just not nearly as bad. My mother also has the same weird cortisol patterns (low diurnal). I don't understand why some of us are so much worse. My troubles did start with some type of bug-virus or bacterial, whatever. Maybe that is the main thing
Thanks for responding everyone!
Liz

 

[CBS]

Regarding SIBO, hydrogen and methane levels clearly distinguish those with SIBO from those without it.

Without treatment, (using a hydrogen breath test) my hydrogen and methane levels are quite elevated, even before the lactulose is administered, even higher after the lactulose. After 14 days on Xifaxin, my hydrogen and methane levels are zero both before and after lactolose.

I suspect that a lot of CFS patients have SIBO. Here is what Dr. Chia has to say about enteroviruses IBS and SIBO (http://www.evmedresearch.com/education/faq.php):

The viruses in respiratory secretions are swallowed into the stomach, and then travel down the intestinal tract where more infections will occur. We have shown the presence of viruses in the stomach, small bowel and colon of ME/CFS patients. The symptoms of IBS (upper and lower GI tract) occur when the immune system react to the viruses growing in the intestinal cells. When the quantity of virus decreases in the cells, the patient would feel better. We have demonstrated the virus protein in the muscle layers of the small intestines and colon, which may be responsible for the motility problem and explain your gastrointestinal symptoms. Bacterial overgrowth is secondary to the above process, and is not likely the root of the problem.

The Xifaxan is treating the secondary issue, not the root cause (poor motility) but it is by far the most effective way that I have found to manage this very frustrating and painful symptom.

 

[Cloud]

I believe that Chia is correct that EV's are at the core of this problem (at least for me) and that the bacterial dysbiosis is secondary to that. I believe it's the immune response to the embedded EV infection that is causing the GI symptoms, and the leaky gut. From there it affects the CNS and further disrupts the immune system.

When I was on heavy antiviral treatment in 2009, my GI system worked like I was 19 years old. Being off that Tx a little over a year now....my GI function is till pretty good but slowly returning to the previous condition.

 

[drex13]

This makes sense. The viruses leading to SIBO part. Unfortunately, Xifaxan and I have a mutual dislike for each other. Worst 6 days of my life, couldn't finish it.

 

[insearchof]

[QUOTE
When I was on heavy antiviral treatment in 2009, my GI system worked like I was 19 years old. Being off that Tx a little over a year now....my GI function is till pretty good but slowly returning to the previous condition.[/QUOTE]

Hi Cloud

Where you under the care of Dr Chia and his protocol?

 

[redo]

Hi,

As far as leaky gut goes, they have definitely done controls and found that CFS and autistic people have leaky gut and healthy controls don't. They measure the presence of substances in the urine.

This organisations was spun off from the University of Sunderland, which did the research
http://www.espa-research.org.uk//

The same research was done independently in Norway but I don't know the links for that. I do know the Norwegian team published a book... anyone know the title?

As far as sibo goes, they have also done research and controls have very little bacteria in the small intestine. There is lots of research on this, it is well established and in lots of research. Most of it done in Germany.

Please do post links to sources if you can find it. I really think we're onto something here. I haven't heard of many who have "swapped the content" of the gut, but judging from the reports that are out there it seems promising.

 

[athomeinRwanda]

I spent a couple of years believing that I didn't have any stomach issues when I developed ME - after testing, I now realize I was most likely mistaken. I'd just become so used to my symptoms over many years that I took them for granted. I've written about my recent success with a strict leaky gut healing diet here:
http://nickyreiss.blogspot.com/2011/04/more-notes-on-healing-ive-now-been-on.html

 

[RustyJ]

Hi Nicky. I am glad you are doing much better. Re your diet, where are you getting your info from?

 

[globalpilot]

Hi Cloud,
Just wondering how bad your previous digestion was ? I have very poor digestion and am just starting to consider enteroviruses.

Regards,
Global Pilot

I believe that Chia is correct that EV's are at the core of this problem (at least for me) and that the bacterial dysbiosis is secondary to that. I believe it's the immune response to the embedded EV infection that is causing the GI symptoms, and the leaky gut. From there it affects the CNS and further disrupts the immune system.

When I was on heavy antiviral treatment in 2009, my GI system worked like I was 19 years old. Being off that Tx a little over a year now....my GI function is till pretty good but slowly returning to the previous condition.

 

[ukxmrv]

Nicky, were bloating and gas the main stomach problem when you say that you didn't think that you had any?

How do you tell your ME symptoms from the ones of ceolic disease?

(p.s. your diet looks very similar to some of the exclusion diets I was on in the late '80s)

 

[athomeinRwanda]

Hi Rusty,

Good question!

I put together the diet myself, based on my test results and various sources of information. I read widely.

I tested positive for fructose malabsorption. Information on a fructose-free diet came from the www.shepherdworks.com.au website (see FODMAP diet), and a handout from my doctors office.

My sister tested positive for celiac, Im still waiting for my results, but am now 100% gluten free. For the time-being Im not taking any probiotics or supplements Ill be seeing a dietician for advice after I have additional test results, and have an idea of whats needed.

Other sources and influences include:

Information from a friend whos being treated by Dr Kenny de Meirleir

This thread on the forum:
http://phoenixrising.me/forums/showthread.php?1346-what-you-need-to-do-and-why


The Treating ME: the Basics from Jodi Bassetts website www.hfme.org

http://www.scdiet.org/1about/index.html

http://www.scdiet.org/1about/scdwhatis.html

http://www.zipworld.com.au/~ataraxy/Salicylates_list.html

http://www.huffingtonpost.com/dr-mark-hyman/yeast-infection-symptoms_b_657354.html

http://www.leakygut.co.uk/Treatments for leaky gut.htm

http://www.ei-resource.org/treatment-options/treatment-information/gluten-free-and-casein-free-diet/

http://shepherdworks.com.au/disease-information/low-fodmap-diet

 

[athomeinRwanda]

Hi uk,

Yes - bloating, gas (I mean, everyone gets gas, don't they?!), acid-reflux - but my symptoms were variable and inconsistent, and could sometimes disappear for months.

Many ME symptoms are similar to those of coeliac disease, without detailed testing I'm not sure that they can be easily distinguished. I think it's going to take time to really know. I read somewhere that it can even take a couple of years to totally recover from coeliac after stopping all gluten. So time and testing the right things will give answers. Getting the hang of being really 100% gluten free may take a bit of time too - so much hidden gluten everywhere.

Sounds like this sort of diet didn't help you?

One thing's for certain - we are all different, and there's no one thing that will be a magic cure for all.

 

[RustyJ]

Thanks Nicky. I will have to do a bit of reading.

One thing, you went off other grains, other than gluten grains that is, and for some people there may not be a need to do this. ME/CFS people often have sulphite and glutamite intolerances in addition to gluten which may not be that obvious. So a grain carbo problem, may be wrongly blamed on the grain, rather than the additive. Simply by avoiding these in flours etc may be helpful - although you would have to go organic, which is expensive.

 

[MARGARITA COLOMBO]

Hi, I just read about your stric diet in your blog, I am doing kind of the same about all the exclusiones but also taking probiotics, an antifungal homeopathic medicine, as well as some ayurvedic herbs and condiments. How did your diet go for you? It takes a strong will to follow it since the food options are restricted and eating out is almost impossible, also because I eat mostly organic food. Was the offort worth it? how is your gut and your health now?
Thank you so much!