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Open-label pilot for treatment targeting gut dysbiosis in MECFS...

Murph

:)
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1,794

  • Open-label pilot for treatment targeting gut dysbiosis in myalgic encephalomyelitis/chronic fatigue syndrome: neuropsychological symptoms and sex comparisons.
    Wallis A1, Ball M2, Butt H3, Lewis DP4, McKechnie S5, Paull P3, Jaa-Kwee A5, Bruck D2.
    Author information
    Abstract

    BACKGROUND:
    Preliminary evidence suggests that the enteric microbiota may play a role in the expression of neurological symptoms in myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). Overlapping symptoms with the acute presentation of D-lactic acidosis has prompted the use of antibiotic treatment to target the overgrowth of species within the Streptococcus genus found in commensal enteric microbiota as a possible treatment for neurological symptoms in ME/CFS.

    METHODS:
    An open-label, repeated measures design was used to examine treatment efficacy and enable sex comparisons. Participants included 44 adult ME/CFS patients (27 females) from one specialist medical clinic with Streptococcus viable counts above 3.00 × 105 cfu/g (wet weight of faeces) and with a count greater than 5% of the total count of aerobic microorganisms. The 4-week treatment protocol included alternate weeks of Erythromycin (400 mg of erythromycin as ethyl succinate salt) twice daily and probiotic (D-lactate free multistrain probiotic, 5 × 1010 cfu twice daily). 2 × 2 repeated measures ANOVAs were used to assess sex-time interactions and effects across pre- and post-intervention for microbial, lactate and clinical outcomes. Ancillary non-parametric correlations were conducted to examine interactions between change in microbiota and clinical outcomes.

    RESULTS:
    Large treatment effects were observed for the intention-to-treat sample with a reduction in Streptococcus viable count and improvement on several clinical outcomes including total symptoms, some sleep (less awakenings, greater efficiency and quality) and cognitive symptoms (attention, processing speed, cognitive flexibility, story memory and verbal fluency). Mood, fatigue and urine D:L lactate ratio remained similar across time. Ancillary results infer that shifts in microbiota were associated with more of the variance in clinical changes for males compared with females.

    CONCLUSIONS:
    Results support the notion that specific microorganisms interact with some ME/CFS symptoms and offer promise for the therapeutic potential of targeting gut dysbiosis in this population. Streptococcus spp. are not the primary or sole producers of D-lactate. Further investigation of lactate concentrations are needed to elucidate any role of D-lactate in this population. Concurrent microbial shifts that may be associated with clinical improvement (i.e., increased Bacteroides and Bifidobacterium or decreased Clostridium in males) invite enquiry into alternative strategies for individualised treatment. Trial Registration Australian and New Zealand Clinical Trial Registry (ACTRN12614001077651) 9th October 2014. https://www.anzctr.org.au/Trial/Registration/TrialReview.aspx?id=366933&isReview=true.

    KEYWORDS:
    Antibiotic; Chronic fatigue syndrome; Clinical outcomes; Gut dysbiosis; Microbiota-gut-brain; Myalgic encephalomyelitis; Neuropsychological symptoms; Open-label pilot; Probiotic; Sex comparisons; Streptococcus; Treatment

    PMID:
    29409505
    DOI:
    10.1186/s12967-018-1392-z
 

andyguitar

Moderator
Messages
6,581
Location
South east England
Thanks for posting that research @Murph. I would take the conclusions with a pinch of salt though as the drugs used may be having an unknown effect that is reducing symptoms. But that said there is some evidence that probiotics are helpful to some but bad for others. From my limited knowledge of the subject I would put my money on the neurotransmitters some bacteria produce as being the main factor in helping or harming patients. I wonder if @Vicki Cole has tried herbs to treat her gut problems.
 

justy

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5,524
Location
U.K
KDM has been treating his patients for gut dysbiosis (if found) for some time. I think the results are mixed. My anecdotal evidence shows that more of his male than female patients make good recoveries.
 

Hopeful1976

Senior Member
Messages
345
Thanks for posting that research @Murph. I would take the conclusions with a pinch of salt though as the drugs used may be having an unknown effect that is reducing symptoms. But that said there is some evidence that probiotics are helpful to some but bad for others. From my limited knowledge of the subject I would put my money on the neurotransmitters some bacteria produce as being the main factor in helping or harming patients. I wonder if @Vicki Cole has tried herbs to treat her gut problems.
Hi. I have tried everything. And yes, they do offer relief but only ever temporarily... now, I wait until it's really bad and then I do 2 or 3 days of no carbs plus oregano oil. It settle's it somewhat. I can't do anymore than 3 days as I get very weak and so dizzy without carbs. And also, if I took oregano long term, I would develop a tolerance as I have with other things in the past.

You know when you just know it's the gut causing most symptoms!

About a year or so ago, when I first tried v little carbohydrate's with 50mg oregano oil 3x a day, I had a major relief in symptoms - I felt normal for any 3 days - it was amazing! Like most of us, I haven't been able to replicate it exactly but i do still get relief. It never lasts though.
 

Learner1

Senior Member
Messages
6,305
Location
Pacific Northwest
Hmmm.... wonder what else was living in their microbiomes. Was it identical between patients? Doubtful. Killing off too much strep sounds like a good idea, but what else is being killed, too?

Also, patients symptoms improved, but the treatment didn't cure them.

Though I believe that its difficult to get well without having a diverse microbiome with lots of happy bacteria and little to no unhappy bacteria, fungi, parasites, and viruses, there's more to it.

Various bacteria in our microbiomes convert various nutrients into bochemicals needed by our bodies' systems, like B12, serotonin, etc. If we lack those bacteria, and therefore those biochemicals, it's a problem. Candida and parasites can impact the ability for the body to absorb the nutrients/biochemicals, too.

And then the right amounts of those biochemical need to do their jobs in the body. Naviaux's metabolomics studies found a lot if biochemical abnormalities, so its silly to think our compromised biochemistry would be fixed in a few weeks to cure ME/CFS.

Some bacteria tend to hang out with certain others and some bacteria are hostile to others. Its a dynamic environment that changes over time.

Some people are tying to manipulate the microbiome using various probiotics, insoluble fiber, antifungals, antibiotics, and fecal transplants but we are a long way from knowing exactly what we're doing, as no one knows what the ideal microbiome is.

I'm still very skeptical of using antibiotics for the gut. The risk is too great for unintended kill off if strains you do want, and you end up with reduced diversity, not good.

The strategy of feeding the strains one needs, along with the food/insoluble fiber they like to eat, while eating a varied organic diet with a wide variety of vegetables is a good one.

As an involuntary N=1 experiment, I've had my microbiome impacted from chemotherapy and antibiotics, but after the chemo, my doctor found I had one of the best stool tests he'd seen after I'd used the above strategy to restore my gut flora, then had my gut blasted by 2 antibiotics for a chronic infection, which was a lot harder to gain diversity back, as well as bifidobacteria, escherichia, and several lactobacillus strains. My ME/CFS symptoms were worst when I had the great gut diversity, but were a lot better when I was still working to get the bifidobacteria back.

Gut health is definitely a foundation for getting better, and worth working on. A lot of us are put on antibiotics without careful thought of the possible unintended consequences or a plan to mitigate them.
 
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bertiedog

Senior Member
Messages
1,736
Location
South East England, UK
There is a huge drive here in the UK for doctors not to prescribe antibiotics unless they are absolutely essential.

Antibiotics have wiped out most of my beneficial bacteria according to my last American Gut stool test. I have just done a UBiome one and I am hoping to see an improvement as I have been working on providing the bacteria lots of fibre and taking targeted probiotics.

My immune system has improved this winter but still a way to go. My energy has been a lot better at times but will soon slip back if I overdo things or catch a virus.

Pam
 

Bob

Senior Member
Messages
16,455
Location
England (south coast)
This paper has got a helpful and interesting description of the nature of ME and it's symptoms and complications. Is anyone familiar with the authors? I don't recognise them. The lead author works in the psychology department at Victoria University, Melbourne. .
 
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andyguitar

Moderator
Messages
6,581
Location
South east England
I have to agree with much of what @Learner1 says. It's a big risk to take anti bios on the off chance they will work. @Vicki Cole is in a good position to get back to much better health if she has identified something- oregano oil- that works. I doubt that using it in moderation in the long term would lead to tolerance. In any event there are many herbs that could help that come from the same family as oregano. They taste good to and are cheap.
 

andyguitar

Moderator
Messages
6,581
Location
South east England
@Vicki Cole are you there? Just had a thought. Oregano oil is also a powerful anti-spasmodic so it is possible that your symptoms are relieved by that action of it and bad bugs is not the problem. Have you ever considered, or had any advice about IBS? Some carbs can make that a lot worse and the symptoms can be very varied.
 

Learner1

Senior Member
Messages
6,305
Location
Pacific Northwest
Oregano oil is an antibiotic, proven to kill several strains of bacteria. Its wise to know what you're trying to kill (and what you actually don't want killed) before randomly using an antibiotic substance of any kind, no matter how natural.
 

Hopeful1976

Senior Member
Messages
345
@Vicki Cole are you there? Just had a thought. Oregano oil is also a powerful anti-spasmodic so it is possible that your symptoms are relieved by that action of it and bad bugs is not the problem. Have you ever considered, or had any advice about IBS? Some carbs can make that a lot worse and the symptoms can be very varied.
I see what you are saying - but it is not just ibs type symptoms I get - I have typical d lactic acidosis type which I find more distressing. This makes me think that it's a bacteria issue.
 

Hopeful1976

Senior Member
Messages
345
I ahr
Oregano oil is an antibiotic, proven to kill several strains of bacteria. Its wise to know what you're trying to kill (and what you actually don't want killed) before randomly using an antibiotic substance of any kind, no matter how natural.
I agree @Learner. The trouble is in the UK the Dr's don't want to listen to an idea that the gut is in dysbiosis. They will not test, which leaves us havin to self finance. Unfortunately I have very little in the way of funds. I've had to experiment in sheer desperation :( Like many of us no doubt :(
 

Learner1

Senior Member
Messages
6,305
Location
Pacific Northwest
In the US, we have to self-finance stool tests and gut treatments, too.

ETA: Note that this is in addition to health insurance premiums of as much as $15,000 annually or more, then deductibles of $2500 to $10,000 before anything is covered, then they only pay on things they don't deem "experimental" (e.g., stool tests) or that are FDA approved drugs. Anything else, we pay for ourselves.
 
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bertiedog

Senior Member
Messages
1,736
Location
South East England, UK
@Vicki Cole Just a thought, have you tried Biocare's Oregano Complex? You can order this online and it contains small amounts of other helpful herbal oils which might help you.

The recommended dose is 3 capsules a day but I find that just 2 capsules seem to get at yeasts in my gut more than Flucanazole without the side effects. I also have pathogenic bacteria and think it would work on these too.

Pam
 

Hopeful1976

Senior Member
Messages
345
@Vicki Cole Just a thought, have you tried Biocare's Oregano Complex? You can order this online and it contains small amounts of other helpful herbal oils which might help you.

The recommended dose is 3 capsules a day but I find that just 2 capsules seem to get at yeasts in my gut more than Flucanazole without the side effects. I also have pathogenic bacteria and think it would work on these too.

Pam
I'll have a look thanks! I tend to use higher nature oregano oil 50mg. It really is amazing stuff but I only use it for 3 days at a go.