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

[anniekim]

If gut problems are central to M.E/CFs, would treatment mean following restricted diets for the rest our lives, or just whilst we heal the gut? I ask because I'm hopeless at restricted diets and the thought of having to follow them for years is demoralising....

 

[ukme]

Maybe it is the gut, but I sure don't have the typical symptoms one would expect from gut problems. Although I generally eat well, I can tolerate almost anything. I rarely have gas, bloating, stomach pain, or anything normally related to gut problems. I can eat hot peppers, dairy etc., you name it. I don't take many medications but my gut has tolerated all of them. Almost nothing has changed about my digestive system since I got ill. Its everything else that doesn't work.

That's what I said to myself about my daughter before we went to see KDM. Amazingly, all the tests proved otherwise. Strep, clostridium, numerous food intolerances and a severely ('top 10% of patients') leaky gut. Who knew?

 

[Sushi]

If gut problems are central to M.E/CFs, would treatment mean following restricted diets for the rest our lives, or just whilst we heal the gut? I ask because I'm hopeless at restricted diets and the thought of having to follow them for years is demoralising....

Annie, unfortunately, most of us come to the conclusion after years that we have to change our diets. It is hard, but once you commit to it, you get used to it.

For certain treatments you might have to be on quite a strict diet for a while and later ease up. I have resigned myself that I will likely have to stay on a non-dairy, non-sugar, non gluten diet for the rest of my life. But I don't miss foods much anymore really--I found that I paid too much for eating things that didn't suit me.

Sad, but true for many of us.

Sushi

 

[Mya Symons]

I just watched a youtube video kinda related to this. Please watch if you haven't. I think someone posted this on another thread. It is very interesting. <iframe title="YouTube video player" width="640" height="390" src="http://www.youtube.com/embed/Vn3hwgnfaW0" frameborder="0" allowfullscreen></iframe>

I'm still having problems with a mysteriously inflammed sigmoid colon. I had a roter rooter test (colonoscopy) and it is not ulcerative colitis and Khron's disease usually doesn't affect the sigmoid colon. I'm getting really tired of diarrhea!!

 

[knackers323]

hi ukme, did the treatment for what KDM found have any effect on your daughters condition?

 

[ukxmrv]

I've not found diets useful AnnieKim,

Patients will probably stick to them if they have some good benefits. If not they will give up (as I largely have). There are so many treatments to try and things go in and out of fashion.

Kept the things that were useful out of all the diets that I tried and discarded the rest. Also I notice that stomach symptoms can be different year to year so things that worked in the 80's may no long work now in my case.

XMRV+

 

[SaraM]

ukme,
I am eager to know what antibiotic drug KDM prescribed for Strep infection.Thanks.

 

[ukme]

ukme,
I am eager to know what antibiotic drug KDM prescribed for Strep infection.Thanks.

She took erythromycin and vancocin (not together!) I'm afraid I don't know what one was specifically for the strep , there was strep, staph and clostridium overgrowths.

 

[ukme]

hi ukme, did the treatment for what KDM found have any effect on your daughters condition?

Yes I would say she improved from where she was at when she started the treatment 70-75% to 85-90%. I would love to say what has caused this, ie the fancy probiotic, the abx, the diet or a combination of everything but I have no idea, although the diet must have helped. However I have been in this long enough to recognise that her recovery is a very fragile thing. We go back to see him next week and I am hoping for repeat tests so we can see where the improvements have been. I am particularly anxious to get the CD14 redone, which came out extremely high last time.
Hope that helps x

 

[redo]

I've been feeling aweful lately, so I haven't been able to reply in the threads I've created. I hope I'll get better soon, and get more active. Anyhow, here's some happy news. A person with MS got the treatment for the microbes in the gut (faecal transplatation). http://www.freakonomics.com/2011/03/04/freakonomics-radio-the-power-of-poop/

And, I stumbled across this one. It says pretty much of the same as I wrote in the first post:
A active infection (e.g. a retrovirus) leads to a active unbalance in the gut flora, which leads to a active dysregualtion of the immune system, which gets us symptomatic (of course simplified, but that's the short story).

http://www.lapislight.com/wp/2010/08/06/changes-in-gut-flora-can-turn-on-autoimmune-genes/

"these findings link host genotype and viral infection with a response to chemical challenge, resulting in Crohns-like symptoms, a virusplussusceptibility gene interaction. However, the story gets even more complicated, because this interaction was shown to depend not only on the host inflammatory cytokines TNF-? and interferon-?, but also on the gut microbiome"

Different syndrome, but much of the same mechanisms discussed.

 

[SaveMe]

I'd really like to hear what you guys think of this:

- Might it be that most of the CFS symptoms come from unwanted microbes in the gut?

Sounds far fetched? Here's how I think it may be:
We all (healthy and sick people) have different types of microbes in the gut. And when some of those microbes get the chance to overgrow, the person get's ill. That's the case when someone get's c. difficile. The body can handle the disease in some cases, in others it can't.

The body is in a constant struggle trying to get wanted microbes to outnumber the unwanted ones. If the unwanted microbes get to grow, and really establish themselves, it can seem like an impossible task for the body to clear that out by itself.

Here's what a microbes in the gut sample could look like:

As you can see, we have much of some, and few of others. And if that balance shifts. I guess we can really be in trouble.

What happens if the unwanted ones, some specific unwanted ones can outgrow the wanted ones?

- We can get severe problems with the breakdown of dopamin and noradrenaline. What this means, is that if we try to concentrate mentally for some minutes, we will get really high levels of those substances, which in turn would make us feel really ill.

- There is a large possibility that we could get uncomfortable socializing. Just like the mice who got the wrong microbes in the gut, we may also feel uncomfortable in new situations.

- We could get lots of memory problems, vision problems, problems with a overactive immune system and other things because the body (meaning immune system) is constantly fighting this pathogenically high levels of the unwanted microbes.

Now. How does all of this match with XMRV?
Well, it's not hard to imagine that a immune suppressive virus could make it a lot harder for the body to get the microbes in the gut under control.

How does this match with psychological stress (making CFS worse)?
Stress may defiantly alter the body's (meaning immune system's) ability to keep the unwanted microbes in the gut under control. This could also be the case for vaccines.

How does this match with HHV-6, EBV, and other infections?
Everything which effects the immune system makes it harder for the body to keep this under control. And stuff like HHV-6, EBV and others can give symptoms on their own.

High levels of clostridia bacteria have also been linked to autism. It may be that a major reason for autism is that something (such as a virus) messes with the body's ability to keep unwanted gut microbes at bay, and when the unwanted ones grow, and get the upper hand, they change how the brain developes (in early child stage)/or causes ongoing autism symptoms because it's active for the rest of their lives as well.


So, what if it's all (or mostly, is a more appropriate word) in the gut?

Results from Australia show that CFS (and MS, parkinson and RA) gets a whole lot better, when they just replace the gut bacteria...

Please be the devils advocate. Please try to think of things which might disprove my hypothesis. Tell me what I've overlooked, or why I might be wrong.

Thanks!

Redo, i think your onto something. I hear of people who took strong antibiotics (cipro and levaquin) who later develop CFS/ME. Are you an M.D by any chance?

 

[redo]

www.zippy-health.com/fecal-transplant-revolting-procedure-that-cures-severe-diarrhea/

I am not a MD.

I really think we're onto something with the gut-brain connection. It just fit's too well. I am still feeling awful, so I'll write more later.

 

[redo]

People Fall Into Three Categories Of Gut Microbiota

It is still unclear whether people /can/ change from one group to another during their lives.

www.medicalnewstoday.com/articles/223110.php

 

[mellster]

Hey Redo - I think the likelyhood that the gut plays an important role is extremly high. Mine did not start before the gut started going bad following a viral infection. And while everybody tells you it's good to be thin and not eat too much my personal experience is that I feel stronger the more I eat - if I can. I think that malabsorption/inflammation caused by the intruders/bad gut flora makes you weak. I also think you don't have to experience gut issues, for a while mine were very subtle and barely noticeable after the initial gastritis was gone. But who knows - interesting thread.

 

[Sushi]

Hey Redo - I think the likelyhood that the gut plays an important role is extremly high... I also think you don't have to experience gut issues, for a while mine were very subtle and barely noticeable after the initial gastritis was gone. But who knows - interesting thread.

Hi Mellster,

I am a patient of Dr. De Meirleir and as you may know, he does extensive gut testing--even biopsies on some patients. I didn't have gut symptoms but the tests I just got back showed 2 infections--one very intense--and no measurable "good" bacteria, despite taking probiotics every day.

Also, I was positive on the H2S urine test, indicating gut problems, and was very high on CD14, indicating (among other things) dysbiosis.

As a great deal of our immune system is in the gut, these problems can't be ignored. De Meirleir puts together individual protocols to deal with what tests reveal.

Sushi

 

[redo]

mellster.
Here's a sentance I find striking about HIV:
"The gut-associated lymphoid tissue (GALT) is the largest lymphoid organ infected by human immunodeficiency virus type 1 (HIV-1). It serves as a viral reservoir and host-pathogen interface in infection"

I have been feeling awful lately. Numbness close to paralyzation in the feet have been one of the symptoms. As well as a havoc in my body in general. Hair loss, vision getting poorer rapidly. Brain foggier. I've been taking VSL#3 lately. I doubt VSL#3 is the reason for this worseing. But it might be.

What I did yesterday was to begin on ciprobay and bifidobacterium (some other gut bacteria). And within the day I began improving. Or, should I say, the worsening began rolling back.

I really do have a hard time finding other reasons for such a quick improvement than effects on gut bacteria. I mean; if ciprobay were to work on an infection in - let's say the brain. It would first have to be taken up into the plasma. It would have to reach a high plasma concentration (takes at least a day of taking pills I guess). And then it would have to reach the microbes, and do so for as long as one division (at least). Antibiotics work when the bacteria multiply... So, I am having a hard time imagining that it is that. If someone knows anythung else it might be, then please do post. All suggestions are very welcome.

Reaching the gut is done instantly when taking abx. So improvement within the day is more likely. But then again, how is it with other gut infections. How quickly do people improve when getting abx for ulcers, for c. difficile or crohn's? Latter isn't proved to be a gut infection, but it's often treated with abx.

It might be the bifidobacterium which have caused the improvement as well.
"supplementing with Lactobacillus- and Bifidobacterium-containing yogurt (AB-yogurt) was shown to improve the rates of eradication of H. pylori in humans."
that points even more in the direction of the gut.

 

[redo]

Anyhow, here's some happy news. A person with MS got the treatment for the microbes in the gut (faecal transplatation). http://www.freakonomics.com/2011/03/04/freakonomics-radio-the-power-of-poop/

Lately I've been thinking what if we're dealing with a pathogen which may enter both the gut, and cause auto immunity there, but also enter the blood and cause havoc there as well...

The last week I've been losing sensation in my feet, and it's crawling slowly upwards to my calves. What scares me is the development. What if it doesn't stop.

When I see which results fecal transplants gave in the case report above, it makes me want to give it a shot. Nothing to lose. It's just hard to find a doctor willing to help.

 

[globalpilot]

Glynis,
I have had my lactic acid in urine tested through Great Plains lab. Would this rule out d-lacticacidosis ? I'm confused about the difference between lactate and d-lactate.

Regards, GP

Hi Re-do,

I'm not sure if you have read all the stuff on d-lactic acid producing bacteria, so I have put together a few links below, which you might find of interest.

firstly, I just wanted to tell you about a study taking place in Australia regarding d-lactic acid in CFS,. This study is furthering research done by a team that found d-lactic acid producing bacteria in higher amounts in the stools of CFS patients, than in healthy controls. Here is a link to the original study.

http://www.cfids-cab.org/rc/Sheedy.pdf

The new study will measure d-lactate in stool, urine and blood samples of CFS patients, and compared to samples of healthy controls, to see whether CFS patients have a higher level of d-lactic acid. Here is their application, together with brief discussion.

http://sacfs.asn.au/download/Lactic%...pplication.pdf

As part of this study a questionnaire was given to the CFS patients, regarding lactic acid symptoms, you can find this here:

http://www.sacfs.asn.au/download/Lac...stionnaire.pdf

I wanted to also point out that research has also been carried out into lactate levels in the brain fluid of CFS patients, and was found to be higher. D-lactic acid crosses the bbb, and causes neurological changes that are said to be strikingly similar to CFS symptoms. Here is an abstract of a recent study.

Increased ventricular lactate in chronic fatigue syndrome measured by 1H MRS imaging at 3.0 T. II: comparison with major depressive disorder.
Murrough JW, Mao X, Collins KA, Kelly C, Andrade G, Nestadt P, Levine SM, Mathew SJ, Shungu DC.

Department of Psychiatry, Mount Sinai School of Medicine, New York, NY, USA.

Abstract
Chronic fatigue syndrome (CFS), a complex illness characterized by fatigue, impaired concentration, and musculoskeletal pain, is often misdiagnosed as a psychiatric illness due to the overlap of its symptoms with mood and anxiety disorders. Using proton magnetic resonance spectroscopic imaging ((1)H MRSI), we previously measured levels of the major brain metabolites in CFS, in generalized anxiety disorder (GAD), and in healthy control subjects, and found significantly higher levels of ventricular cerebrospinal fluid (CSF) lactate in CFS compared to the other two groups. In the present study, we sought to assess the specificity of this observation for CFS by comparing ventricular lactate levels in a new cohort of 17 CFS subjects with those in 19 healthy volunteers and in 21 subjects with major depressive disorder (MDD), which, like GAD, is a neuropsychiatric disorder that has significant symptom overlap with CFS. Ventricular CSF lactate was significantly elevated in CFS compared to healthy volunteers, replicating the major result of our previous study. Ventricular lactate measures in MDD did not differ from those in either CFS or healthy volunteers. We found a significant correlation between ventricular CSF lactate and severity of mental fatigue that was specific to the CFS group. In an exploratory analysis, we did not find evidence for altered levels of the amino acid neurotransmitters, gamma-aminobutyric acid (GABA) and glutamate + glutamine ('Glx'), in CFS compared to MDD or healthy controls. Future (1)H MRS studies with larger sample sizes and well-characterized populations will be necessary to further clarify the sensitivity and specificity of neurometabolic abnormalities in CFS and MDD.


Dr. Dikoma Shungu "will build on a preliminary study showing that brain fluid of CFS patients contains significantly elevated levels of lactic acid, or lactate, a substance important in metabolism." "If this study is successful, brain lactate levels could provide an objective diagnostic biomarker for CFS and evidence of a metabolic problem in these patients."


D-lactic acidosis is a condition that is almost exclusively taught to gastroenterologist's, however they only see it in patients with a shortened bowel, as these patients cannot fully digest carbohydrates due to surgery or disease of the small intestine. It is caused by d-lactic acid producing bacteria fermenting carbohydrates, which changes the pH of the bowel, favouring acid loving bacteria at the expense of other gut bacteria. D-lactic acidosis can present without a change in the anion gap, making it invisible in blood tests, unless specifically testing for. See below:

"There are two major ways acidosis is defined from routine laboratory data. First, organic acids may be added to the body so quickly that both the H and the anion are retained; this results in metabolic acidosis and an elevated value for the plasma anion gap. Second, metabolic acidosis may be present without a rise in the plasma anion gap. In this latter setting, either the D-lactate anion was retained in the lumen of the GI tract (with the H being absorbed or titrated by bicarbonate in the lumen of the GI tract), or it was excreted in the urine, but in either case, the cation lost with it was Na and/or K ion (not a H or NH4 ion). This latter type of metabolic acidosis is akin to the over-production of hippuric acid in glue sniffers. Since D-lactate anions are reabsorbed by the kidney much less readily than is L-lactate, as time progresses, the anion gap may decline without resulting in a rise in the plasma bicarbonate concentration-that is, D-Iactate is excreted as its Na or K salt (Fig. 6). Hence there are a number of mechanisms that may contribute to the presentation whereby the rise in the plasma anion gap might not match the fall in the plasma bicarbonate concentration. Not only might this lead to a diagnostic problem, it has implications for therapy because, once the organic anions are excreted as their Na or salts, these anions are no longer available for metabolism to regenerate bicarbonate, and the patient might have developed a deficit of Na and/or K4."

Path labs are not able to test for d-lactic acid, as they do not have the d-lactate assy kit required and would have to ship a test in, however I believe d-lactic acid can also be screened for in urine tests.

On a CFS discussion group I found the post below, from a lady saying she had tested for high levels of d-lactate, but this testing was not done through a GI, and I am presuming that the significance was lost on their doctors. Normal levels of d-lactate are between 0.0-0.25 in healthy individuals, and her levels were around 2.4mmol/L, which is the level that neurological changes occur in short bowel patients suffering from dla. They should have been urgently referred to a GI, for formal testing, treatment and monitoring of their d-lactic levels, until the levels returned to normal. It is seen as a serious condition. Treatment is antibiotics, sodium bicarbonate, either orally or IV and a low carb diet, in cases where there is a recurrence of d-lactic. It can be a case of trial and error, before the correct antibiotics are found, depending on the resistance of the bacterial overgrowth.

http://www.endfatigue.com/forums/viewtopic.php?f=17&t=1271


Here are some papers regarding d-lactic acidosis, however they are all in patients with a shortened bowel. The first one has a good graph of symptoms, which are very similar to some CFS symptoms. I would imagine that in a short bowel patient, their symptoms would be very severe, more so than in CFS.

http://hkjpaed.org/details.asp?id=577&show=1234

This paper talks of the possibility that d-lactic acidosis may occur in a human with a complete bowel, when they were investigating d-lactic acidosis in a calf model. "The mechanism is likely similar to that documented for D-lactic acidosis in SBS in humans except the etiology of the malabsorption is viral infection induced villous atrophy rather than surgical removal of the small intestine."

It goes on to say

"There is a possibility, although it has not been described, that a similar scenario could occur in diarrheic monogastrics, including humans"

http://jn.nutrition.org/content/135/7/1619.full

This one talks about d-lactate having a circadian rythm, so afternoon testing might show it up. Typically, patients would have normal serum lactate, but high urinary lactate, in an afternoon test, the high urine test would suggest d-lactate.

http://www.clinchem.org/cgi/reprint/41/1/107.pdf

The main symptoms of d-lactic acidosis are severe lethargy, changes in gait and co-ordination, slurred speech, or difficulty in speaking, blurred vision, headaches, blunted judgement, abusive or aggressive behaviour, irritability, inability to concentrate, the feeling of being drunk in the absence of alcohol, hyperventilation, craving carbohydrates, nausea and nystagmus.

Sorry about the long post, hope it does not tire you out too much

Glynis x

 

[Glynis Steele]

Hi GP,

From what I can gather, d-lactate needs to be specifically tested for, however if your total urinary lactate is high, this would warrant further investigation for d-lactate. D-lactate in urine and blood has a cirdaian rhythm, and builds up during the day, after each meal, so to test for high lactate, a late afternoon, or early evening test is best, if this were high, then d-lactate should be suspected. Morning lactate testing would not necessarily be a good way of investigating d-lactate.

Hope this helps,

Glynis x

 

[globalpilot]

Thanks for the fast response! My urinary lactate levels (measured twice) were both normal. Would that rule out d-lacticacidosis ? if not, do you knwo where I could get this tested ?

GP

Hi GP,

From what I can gather, d-lactate needs to be specifically tested for, however if your total urinary lactate is high, this would warrant further investigation for d-lactate. D-lactate in urine and blood has a cirdaian rhythm, and builds up during the day, after each meal, so to test for high lactate, a late afternoon, or early evening test is best, if this were high, then d-lactate should be suspected. Morning lactate testing would not necessarily be a good way of investigating d-lactate.

Hope this helps,

Glynis x