ME/CFS for 18 years, recently diagnosed with D-Lactic acidosis as cause of symptoms and illness.

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I want to thank @Avenger for starting this thread. I have learned so much. Thank you for taking the time to provide so much info. I knew very little about SIBO and nothing about D-Lactic acidosis before reading here, and I have learned things that I think have real potential to help me.

I have mostly read the early posts so far, and one of the resources you mentioned was Dr. Sarah Myhill. She has a great website, and I just ordered her book on CFS.

I would like to get some input on testing from anyone who cares to offer. Any thoughts on how useful people have found fecal testing to be? I mean, did the test results actually change your course of action? Any suggestions for online ordering of tests without a prescription from a doctor? I am going through a phase where I am fed up with doctors, plus fears of COVID exposure. I am aware of Doctor’s Data tests available through Holistic Health, but was hoping there might be other sources where one could order a test online and get professional interpretation of the results. I’m in the US. Thanks for any input.
 
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Thank you @sometexan84 for your reply. The link you provided for the ASO test didn’t work for me, but I did check out the Walk-In Lab website, and see that they provide the Doctor’s Data CSA test for $75 less than Holistic Health does, plus several other fecal analysis tests.

The anti-streptolysin test you recommended looks like a blood test. This would mean going to a lab for the blood draw, and I am too nervous about COVID exposure right now.

About 10 years ago I did have an anti-streptolysin test as part of some blood work. It was normal (116 IU/ml, range 0-200). Prior to that test I had a positive result for streptozyme. This was through my GP, and he sent me to a specialist (Rheumatologist) who ran some more blood work, including the ASO, and was not concerned about the positive streptozyme. Any thoughts on whether these results point toward something? I had chronic strep throat as a kid, if that is of any significance.

I am obviously not very educated on this subject, but what I am wondering is whether a fecal test (like Doctor’s Data) has high potential to reveal something specific. Especially if I now suspect (with my limited knowledge) that SIBO and D-lactic acid may be issues for me. Or if I am better off just trying protocols for those conditions to see if I get results?
I had a fecal test about 12 years ago, through a doctor, and I remember the results being very vague and it just felt like a waste of money. The only recommendation was to take the probiotics that he sold in his office. Probably loaded with lactobacillus acidophilus and other undesirables.

If I were going to do Doctor’s Data testing, through the Walk-In Lab, it looks like I probably should do both of these tests to be thorough.
Comprehensive Stool Analysis plus Parasitology x3 (CDSA/P) for $394
status of beneficial and imbalanced commensal bacteria, pathogenic bacteria, yeast/fungus and parasites
GI Pathogen Profile, multiplex PCR for $407
… tests for 22 Viruses, parasites, and bacteria … to test for the presence of viral infections or to differentiate between possible diarrheagenic strains of E. coli

Walk-In Lab sure has good prices, compared to other sources for Doctor’s Data tests. Have people had good experiences with them? Thanks again for taking the time to respond.
 

sometexan84

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The anti-streptolysin test you recommended looks like a blood test. This would mean going to a lab for the blood draw, and I am too nervous about COVID exposure right now.
Yea, it's a blood test. I've ordered from WalkinLab a bunch of times. Great for ordering labs for Quest and LabCorp w/out a doctor involved. Especially good if you are impatient like me.

Sometimes there are good discounts too, and discounts for ordering multiple labs at once. I just wish they had more labs to choose from. I don't recall seeing Walkinlab mentioned here, but surely some on the forum have used it.

So, I guess I'll elaborate on my experience - It's super convenient and fast. Usually, I can order a lab, and go to Quest an hour later, and Quest will already have my lab info there ready to go.

AND, the lab results usually appear on your WalkinLab profile before they even appear on the Quest or LabCorp patient portals. Also kind of useful is their FAX to physician thing, where you can easily fax the lab results to your doc.

WOW! I just logged in to my WIL portal, and noticed (2) things...

1) Points for Referrals! PLEASE use my referral code when/if you register - 3DE0FC

2) Reward Points. I didn't know I had this. Apparently, I already have enough for an $80 gift card, which I shall be redeeming now! :thumbsup:

I have never used the Test Kits, so I can't speak to those.

positive streptozyme. Any thoughts on whether these results point toward something?
Sorry, I don't know much about streptozyme

But, from fxmedicine, here are (3) to watch out for....
"A more recent investigation into the intestinal microbial balance of individuals with CFS found that there was a significant overgrowth of homofermentative D-lactic acid producing bacteria, Enterococcus faecalis and Streptococcus sanguinis, in combination with E. coli numbers significantly lower than that of healthy individuals."

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sometexan84

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Also, you should read this 2018 article regarding Probiotics and D-Lactic Acidosis:

‘Brain fogginess’ and D-lactic acidosis: probiotics are not the cause

It is regrettable that one poorly controlled paper can lead to such negative backlash on the probiotic field. Respectable media outlets including Newsweek, Science Daily, Psychology Today, the Daily Mail, MSN.com, and others blindly reported the results of this study without critical analysis of the paper. These stories advance the opinion that probiotics are potentially harmful and should be sold only as drugs. This flies in the face of many scientific studies that document safety compounded with safe, worldwide consumption for decades of probiotic foods and supplements.
I take probiotics and believe they have helped in my overall treatment. Especially regarding the bacterial and viral infections in my gut.
 
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Thank you @sometexan84 for all the info you provided. That looks like some interesting reading on d-lactate and CFS. And, I need to keep an open mind and read the other article with a different perspective.

I’m so glad to know about Walk-in lab. I will save a lot of money using them instead of Holistic Health if I decide to do some fecal testing. And it is good to know, for in the future, that I could order blood draw tests through them for Quest or LabCorp. If I do order those fecal tests I will definitely use your referral code to get you some more points.
 

Avenger

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I want to thank @Avenger for starting this thread. I have learned so much. Thank you for taking the time to provide so much info. I knew very little about SIBO and nothing about D-Lactic acidosis before reading here, and I have learned things that I think have real potential to help me.

I have mostly read the early posts so far, and one of the resources you mentioned was Dr. Sarah Myhill. She has a great website, and I just ordered her book on CFS.

I would like to get some input on testing from anyone who cares to offer. Any thoughts on how useful people have found fecal testing to be? I mean, did the test results actually change your course of action? Any suggestions for online ordering of tests without a prescription from a doctor? I am going through a phase where I am fed up with doctors, plus fears of COVID exposure. I am aware of Doctor’s Data tests available through Holistic Health, but was hoping there might be other sources where one could order a test online and get professional interpretation of the results. I’m in the US. Thanks for any input.

Hi Cnew2this,
Doctors are just not trained and none of these Gastrointestinal issues should not be left to Holistic Medicine alone, these Gut issues can be serious, life changing and even life threatening.
I believe that a number of deaths have occurred not only directly from these Gut issues, but also from people who become desperate for the symptoms to stop and I was close to suicide on a number of occasions when the symptoms became unrelenting. Merryn Crofts had classic Gastrointestinal symptoms, but her death was recorded as ME.

Although Death is supposedly very rare; ''ME/CFS is rarely recorded on death certificates. In England and Wales, between 2001 and 2016, 88 death certificates stated that the death was either partly or fully caused by myalgic encephalomyelitis/chronic fatigue syndrome, which is less than six deaths per year.15 Oct 2019''

I do not have all the information by any means, just a pointer and much will come down to personal experiment; and what may work for one with ME/CFS may not work for another, because the causes of Bacterial Overgrowth (and reduced diversity of other necessary Gut Bacteria) may be very different for each of us, but we need to work together. I am still trying to fully reverse my own illness permanently (so that I can use all Carbohydratres), and have experimented with prokinetics including Naltrexone and Resolor (for motility), antibiotics, natural antibacterials, different diets including FODMAP and highly reduced Carbohydrates, Probiotics and Prebiotics and even charcoal to reduce neurotoxins when ill.

*I still have to trial Saccharomyces boulardii that are know to mediate the protective effects of normal healthy Gut Bacteria.

Antibiotics such as Metronidazole, the Carbohydrate and Simple Sugar diet has been the most successful for me, but this can leave you without much of the necessary minerals, vitamins and nutreant's to feed good bacteria long term. It is highly complex and you are blindfolded because you have no way of measuring the changes except how you feel and there is both delay fluctuations in changes good and bad within the Gut and it is easily possible to misunderstand.

I am trying for a full reversal and that means that some of the experiments will fail and my own illness is likely to worsen with continued use of antibiotics and FMT is likely to be the best source of Probiotics, but there may also be other benefits of FMT that are barely understood (possibly beneficial phage and immune responses if the transplant thrives).

The hardest part is finding the driving source of your Bacterial Overgrowth and you need a competent Gastroenterologist to work with who understands that illness can be caused through different forms of Bacterial Overgrowth's. But they are thin on the ground within the NHS although C.Diff which is just anther form of Bacterial Overgrowth is well understood, can be identified and treated. I really find it hard to believe that the NHS is not looking to identify other forms of Overgrowth as a source of ill health.

Concerning Microbiome tests, I have read that the same samples analyzed by different companies have come back with different results and may not be accurate for a number of reasons including fecal fluctuations in the microbiome. But Birmingham Children's Hospital have used Fecal Analysis to identify, quantify and treat D-Lactic acidosis and it is also used to identify C.Diff. If you are going to use a Microbiome test, then you should wait until you have definite symptoms, and do a 3 day investigation with a reputable company. It may provide the information you need; but there are also Organic Acids tests that can identify specific species in Overgrowth due to the overproduction of organic acids.

I think that it may be many decades or even longer before the human microbiome is fully understood or easily treatable. We are only on the threshold of exploration and the trillions of symbiotic bacteria have not been fully mapped, DNA/RNA recorded, inter-relationships, signalling and immune policing or the full extent of the complexity or production of things like neurotransmitters, specific chemicals and affects on hormones, may still be fully beyond our understanding a long way into the future. It is likely that interactions with Bacteria have shaped us into what we are and certainly influence the early development of our brains and development of children. It is even possible that modern living (use of multiple chemicals including Antibiotics, Fluoride etc.) is causing us to devolve and that ME/CFS is a side effect that may continue to affect more and more people and may affect our development as a species. Simple things that we use such as artificial milk substitutes, without breast milk may badly affect children's immune systems and bacterial composition (this is seen in the early weening of piglets that are given blanket antibiotics due to Gut infections because they are unable to rely on the mothers immune system). Science has made too many 'advances' without proper understanding of the underlying issues, but it is the combination of so many changes that may cause us to devolve. Just one species of Bacteria produces 95% of one of our many neurotransmitter's, Seratonin.

But there are shortcuts and ways around that should help including FMT, Antibiotics, natural antibacterials, including knowledge about abnormal fermentation in both Gut and Small Intestine and Dr. Myhill is one of the most gifted Doctors. Fecal Transplant and even development of Probiotic Bacteria taken from a Superdonor's may hold promise, but the cause of the problems that led to Bacterial Overgrowth in the first place needs to be investigated for FMT to remain balanced. There are a number of other sites such as Cort Johnson's 'Health Rising' where many are participating in investigations and experiments to try to reverse Bacterial Overgrowth and reset the microbiome through different protocols including FMT.

The big problem is that this is all most likely due to multiple environmental issues, that we have created; and if we continue using multiple chemicals, antibiotics pesticides and even many medications (much of which ends up in the watercourses and back into rivers and oceans and back again with increasing toxicity to ourselves). Although paradoxically antibiotics can select for Bacterial Overgrowths but can also be used to control Overgrowth as in C.Diff, they are not the best method, much like cracking walnuts with a sledgehammer. Chemicals and antibiotics used in farming, Fluoride used in water to kill bacteria that cause tooth decay also affect the microbiome and this is only the tip of the iceberg, with new dangers that we have created coming to light every day (PCB's used in electronics have been found affecting killer wales causing infertility and cancer in humans).


Paul.
 
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@Avenger (Paul) – Some good info and things to think about. You really nailed the frustration that I have experienced in the past, and still do, with trying to improve my gut health: “It is highly complex and you are blindfolded because you have no way of measuring the changes except how you feel …”. And, I completely agree that getting to the bottom of what caused the overgrowth in the first place is critical, and whether it was due to the individual’s habits or something in their environment. I don’t think any experts have those answers and a lot of research is needed in that area.

I believe (hope) that because of your thread I am headed in a good direction before having become extremely ill. I have educated myself somewhat (with a long way to go) about gut health, and how complex it is. I feel like I was steered in the wrong direction previously by doctors. After reading your thread I started doing research on SIBO and d-lactic acid. I don’t know for sure that this is my specific problem, but it could at least be a strong component. I found this guy’s website and bought his book and am on his protocol now: John Herron, The Gut Health Protocol. He at least is a believer in the significance of SIBO and how the wrong probiotics can screw one’s gut up even more. So I am going to give this a try for a few months and if I don’t get results will then seek out a good Gastroenterologist.

Thanks again for starting this thread, because it really helped me. I admire your perseverance and hope you continue to make progress toward improving your health.
 

Avenger

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Hi again Cnew2this,
I was told to take Symprove Probiotic by an NHS Consultant for D-Lactic illness. I realized that it contained D-Lactic producing species, but went ahead because I have to work with these consultants even if they do not have a full understanding. I became much worse over the past 3 months and am about to try Symbioflor 2, that SamB kindly sent me to try.


SamB and myself have very similar symptoms and illness and have both been experimenting and trialing a number of different Probiotics along with myself including Myarisan, Bifidobacterium breve, Rhamnosus (a favorite of Dr. Myhill) and resolor for motility. I have also tried all of these with varying success, but even after a period of prolonged reversal, symptoms have returned when I returned continuously to Carbohydrate diet. In my case, no one has been able to identify the cause of my overgrowth or the bacterial species.

Symprove may well help some people who have non-D-Lactic overgrowths, but the best Probiotic will always be FMT from a healthy person and it may take a number off attempts to get it to remain. They have a Superdonor who provides FM at Birmingham Q.E. Hospital and I wonder if he may have something special such as phage virus that act positively?

The most important thing is that we do not fully understand the complex interactions and relationships of the trillions of bacteria and cannot list or sequence the DNA of particular genus within a species. By the time this has been performed and fully understood many years into the future, our 'normal' microbiome's may have altered substantially and further devolved. Mapping and comparing racial and specific food dependent microbiome's could be urgent for us as a species.

It is possible that some of these probiotics have the potential to make things even worse, but without the input of properly trained Gastroenterologist's there is nowhere else to turn. The good thing is that so many on these forums are providing helpful information and a number of protocols that have reversed similar conditions successfully for a few of us.
 

Jwarrior77

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Are metronidazole and rifaximin the two best antibiotics to try to treat this? Are there any other antibiotics that could help? What are the best herbals? Berberine or Oregano Oil?
 

Jwarrior77

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@Avenger and others.

I finally got a doctor to write a script for the Mayo Clinic D-lactate urine test but I don't know if I should put myself through eating a bunch of carbs that could kill me by putting me in acidosis. I was on the carnivore diet and taking herbals for three months and it basically saved my life. But I eventually had to go off of it because complications arose. For the past couple months I've been getting progressively worse after having to eat carbohydrates. Right at the moment I've basically been only eating meat and drinking apple juice to get my sugar in. Simple sugars seem to not aggravate the condition as much as it gets absorbed quickly enough that my gut doesn't ferment it. But I still get issues with it that are significant.

Should I go through with the test? I want to eat enough to show the d lactate being excreted in the urine but not too much that it could do significant damage. I'm very fragile at the moment. Whenever I eat carbs I get severe neuro/cognitive issues, autonomic issues, acidosis, fatigue, and go into a coma like state among other symptoms. Each time I get worse and worse to the point that if I do it one more time I fear it may kill me. If I go through with it I feel like I'm going to have to be hospitalized to correct the acidosis and correct my gut issues. But I have little faith in the doctors as they are incompetent with issues like this and I've been in acidosis at the ER so many times without them investigating or doing anything. I'm very under weight and don't know what diet I should go on. My stomach, gut and gallbladder all work at like 5%. To the person wondering about CCI/AAI I'm 95% convinced this is caused by vagus nerve damage and brainstem dysfunction or at least in my case. It all controls how your stomach, gallbladder, liver, pancreas, and gut works. I believe the vagus also modulates the gut bacteria and microbiome. Any damage or dysfunction can cause many issues related to those organs. I developed ME/CFS after forceful chiropractic manipulations along with getting sick. I have upper cervical ligament damage and lower cervical instability confirmed by Digital motion X-Ray, CT, and MRI. I've been diagnosed with CCI, AAI, and subaxial instability by Dr. Gilete.

Anyways I'm running out of options on what to do here. I think I might have to try antibiotics just to do something because I'm running out of ideas. Don't know what antibiotics would be the best. Also going on an elemental diet I think.
 
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@Avenger and others.
Anyways I'm running out of options on what to do here. I think I might have to try antibiotics just to do something because I'm running out of ideas. Don't know what antibiotics would be the best. Also going on an elemental diet I think.
I'm in an almost identical boat here. I'm attempting to get the d-lactate test, even though going through it will be a repeat of the past decade of ptsd. I'm also currently having my microbiome sequenced via thryve and hopefully that can provide some insight.

@Jwarrior77 personally I would like to know to prove to people I know that there's a measurable difference in my reaction to carbohydrates than others' have for at least the past 10 years. I'm confident that this can be overcome by fixing gut motiility and modulating microbiome.
 

Jwarrior77

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I'm curious, have you guys ever checked your blood sugar when having episodes? Mines consistently been on the higher side.
 
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I'm curious, have you guys ever checked your blood sugar when having episodes? Mines consistently been on the higher side.
Yes, when investigating hormonal issues with an endo diabetes was a main suspect as it runs in the family. I had a meter and did several pricks of my finger during daily crashes. My blood sugar was always within range, ruling out that as a cause of the fatigue.

It could make sense depending on your diet as this happens in reaction to fermenting carbohydrates.
 

Avenger

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Are metronidazole and rifaximin the two best antibiotics to try to treat this? Are there any other antibiotics that could help? What are the best herbals? Berberine or Oregano Oil?

Hi, Jwarrior,
sorry I have not been on the site for a while, but Metronidazole was the best Antibiotic for me. I have tried Oregano, but cant be sure of its efficacy, because I still fell ill although it may have helped it was not as decisive as using Metronidazole which stopped often dangerous symptoms quickly until I eventually failed to respond due to resistance. I am now using Vancomycin. Antibiotics are not the best method of controlling Bacterial Overgrowth, because they can further affect the balance within the Microbiome (even reduce necessary symbiotic species causing other problems), but it will tell you a great deal if you respond to Metronidazole and depending upon how unwell you are may give back some quality of life; but ideally should be done through a Gastroenterologist after Bacterial Overgrowth has been diagnosed; but I have talked to others with ME/CFS who cannot get this investigated through the NHS, due to the lack of training and understanding of most Doctors, many of whom have been trained to believe that ME/CFS is a psychological disorder which will limit further patient investigations (Psychologists use claims of Gut problems lasting as long as 2 years as perceptual issues; and can diagnose Somatization disorder from symptoms such as abdominal Pain, which happened to me).

Some Antibiotics can select for, and cause Bacterial Overgrowth as well as eradicate (eg C.Diff can be caused by some antibiotics and eradicated by others). There are no absolutes because so little is known about the Microbiome and interrelationships between different Bacteria, Immune Policing and Host and for me Antibiotic use is like using a sledgehammer to crack a walnut, but (perhaps one day we will be able to target specific Bacteria through Phages). C.Diff is just another form of Bacterial Overgrowth and I believe that there may be a number of other possible combinations causing the abnormal production of Orgainic Acids that ammount to fluctuating levels of poisoning from Neurotoxins for at least a subset of ME/CFS.

There are a number of ways to stop the symptoms, but finding the cause is the most important (eg. Motility issues due to another underlying problem and a number of Medications can cause or contribute to Bacterial Overgrowth); but I have used Anbtibiotics, Probiotics (with Prebiotic Inulin Fructo Oligosacharides 'FOS'), Diet and Motility aids including Naltrexone and Resolor and I am trying for FMT.

I use Probiotics between Antibiotic courses, but they only work as long as they are taken because the majority do not remain in the Gut. Symbioflor 2 may remain longer (Ecoli variants used for IBS was also used in the past for other 'functional gastrointesinal disorders'; https://www.hindawi.com/journals/ijb/2016/3535621/ ).

Reports are often contentious because understanding is still in its infancy, but a number of artilcles state that Probiotics can cause D-Lactic acidosis and that non D-Lactic producing Probiotics can stop D-Lactic symptoms;
https://www.google.com/search?q=Pro...2i29i30l3.29261j0j15&sourceid=chrome&ie=UTF-8

Case Reports;
Apr-Jun 2013;98(2):110-3. doi: 10.9738/CC169.
A stand-alone synbiotic treatment for the prevention of D-lactic acidosis in short bowel syndrome
Kazuhiro Takahashi 1, Hideo Terashima, Keisuke Kohno, Nobuhiro Ohkohchi
Affiliations expand

Abstract
Synbiotics are combinations of probiotics and prebiotics that have recently been used in the context of various gastrointestinal diseases, including infectious enteritis, inflammatory bowel disease, and bowel obstruction. We encountered a patient with recurrent D-lactic acidosis who was treated successfully for long periods using synbiotics. The patient was diagnosed as having short bowel syndrome and had recurrent episodes of neurologic dysfunction due to D-lactic acidosis. In addition to fasting, the patient had been treated with antibiotics to eliminate D-lactate-producing bacteria. After the failure of antibiotic treatment, a stand-alone synbiotic treatment was started, specifically Bifidobacterium breve Yakult and Lactobacillus casei Shirota as probiotics, and galacto-oligosaccharide as a prebiotic. Serum D-lactate levels declined, and the patient has been recurrence-free for 3 years without dietary restriction. Synbiotics allowed the reduction in colonic absorption of D-lactate by both prevention of D-lactate-producing bacterial overgrowth and stimulation of intestinal motility, leading to remission of D-lactate acidosis.
Similar articles

Tinidazole from the same family as Metronidazole also works well, but I have sadly gained resistance to both. Rifaximin should be an ideal antibiotic, but did not work as well as Metronidazole for me. I have used a number of Broad Spectrum Antibiotics, whereas those limited to the Gut are more ideal if they work for you because they should limit resistance and damage to other areas where Natural Bacteria Proliferate, not just in the Gut. But there are other alternatives to antibiotics. D-Lactic overgrowth means that due to Bacterial Overgrowth that you can no longer metabolize certain Carbohydrates and Sugars, so you can use other methods to stop fermentation;

You could also try a FODMAP diet that includes Complex Carbohydrates that will not ferment in the Small Intestine or even try a Carbohydrate Exclusion Diet (No Carbs or Sugars to see if your symptoms stop or reduce after 4 days). I still get low level symptoms using the FODMAP diet, and you are still vulnerable to certain Carbohydrates (Bread, Pasta, Pizza, Simple Sugars etc....) if you cannot find the correct foods, but it has helped although I have found the diet is extremely difficult to adhere to especially when family members invite you round to meals that consist of Carbs and Sugars and hunger often overides good sense when there is nothing else available.

I have found that a number of Broad Spectrum Antibiotics also work for me including Oxytetracycline and Co-Amoxiclav, but all Antibiotics may also cause further damage to the Gut, which could theoretically reduce other species and allow for further Overgrowth. But for many years, Metronidazole worked well for me, but it only had a temporary effect of roughly 5 to 12 weeks before my symptoms returned. This may be because it was not taken for long enough to completely eradicate the Overgrowth to begin with because I was only prescribed for 5 to 7 days.

Antibiotics would ideally be used prior to FMT, and there are a number of protocols for doing this with multiple antibiotics to clear the Gut of unwanted Bacteria that you can find on Curt Johnson's site Healthrising, based on other reports and experiments. FMT is probably the best Probiotic of all, because the Bacteria and other components may remain in the Gut long term, resetting the Gut to within balance if the underlying issues have been addressed.

Rifaximin may well work for you and is an better Antibiotic because it remains only in the Gut. I have also had success with some Probiotics, which have given me a temporary reprieve. I have to say that you need to keep a diary and log all symptoms and log against what Antibiotics or Probiotics that you use (but remember there can be a 3 or 4 day delay in Gut changes). Nothing is simple and I have to say at this point that I had tried Symprove once again just to be sure; and I have gone into remission (I started by doubling the dosage, meaning that the Bacteria concerned may be sensitive to higher dosages and there is no guarantee of quality for many Probiotics that may not meet the quantity or quality necessary).

We are literally pioneering our way through this and finding a good treatment may be different for each of us with possibly different forms of Bacterial Overgrowth affecting us. There are dangers with Antibiotics and Probiotics and I should be giving you advice to contact your Doctor before trying any, but most Doctors remain untrained and are ignorant of these issues! But you should find one that you feel comfortable enough to discuss these issues with if that is possible. Perhaps this will change in time. A number of medications are also known to cause or contribute to Overgrowths eg. proton pump inhibitors such as (and many people take these due to Helico-Bacter which affects approx. 50% of the population).

It all comes down to experimental choices, trial and error and there will always be some risk taking, even with Probiotics or other medications; but I had been close to suicide due to the level of illness at times before diagnosis in 2017. I had serious symptoms similar to Merryn Crofts (who died in Hospital while being given food that would have contained Carbohydrates and Sugars directly into her stomach). Choices also depend upon the severity of illness, so I have no regrets taking Metonidazole over a prolonged period because I was put in a position that there was no other choice. I had only used Antibiotics when my symptoms were severe and often had months of fluctuating life changing symptoms that would slowly increase to severe again.

Remember that you still need to find the underlying cause of your Bacterial Overgrowth, which can be caused from multiple underlying problems including Diabetes. Merryn Crofts was believed to have developed Ehlers-Danlos syndrome, which can be related to GI symptoms. Gut motility changes alone can cause Overgrowth. Ehlers-Danlos syndromes are Collagen related genetic disorders;

''Evidence suggests a link between connective tissue disorders such as the Ehlers-Danlos syndromes (EDS) and digestive system (gastrointestinal, GI) symptoms. Patients with EDS can come to the doctor with hernias, out of place organs, and prolapse, as well as functional problems such as changes in the speed of the digestive system (gut motility). Patients with hypermobile EDS (hEDS) show GI symptoms related to the gut and often meet the criteria for disorders such as indigestion and irritable bowel syndrome.''

Hope this helps and is not too daunting.

I hope that you all have a good Christmas.


Paul.
 
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@Jwarrior77 overall it seems there is a strong overlap between SIBO/IBS and just general large intestine dysbiosis. I didn't make the gut connection until the IBS symptoms became muuch stronger and then I still thought it was just SIBO, not realising this may have been the root cause of long term fatigue and cognitive fatigue.

  1. It will be difficult to get a mainstream GI to do thorough investigation of the D-Lactic issue as it's still emerging science and likely we don't know the full picture on the organic acids impact, gut and brain interplay.
  2. You can likely get antibiotics based on the SIBO test/diagnosis. These may provide temporary relief but I don't think they are a good long-term solution as you will have to rotate them to maintain effectiveness and continue damaging your friendly bacteria... I'm not even sure I would advise them if you can avoid it, it's tough to replace friendly bacteria.
  3. Low-fodmap keto may provide relief however this diet is not great long term, you don't want to remain in ketosis forever.
  4. Proiotics can provide relief. My thryveinside report suggested I have no lacctobaccillus or bifidobacterium. Some of these proiotics help ubt you have to e careful to research strains that do not produce d-lactic acid. Strains that have helped me include l rhamonosus gg & s boulardii. How taking boulardii long-term affects gut health will be tough to tell.
  5. FMT. Experimental with no known efficacy. Outside of expensive clinics, this is a diy method. I'm also opting for this route as it may provide longer term relief.
Good luck, and let us know your thoughts!
 

Avenger

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@Avenger and others.

I finally got a doctor to write a script for the Mayo Clinic D-lactate urine test but I don't know if I should put myself through eating a bunch of carbs that could kill me by putting me in acidosis. I was on the carnivore diet and taking herbals for three months and it basically saved my life. But I eventually had to go off of it because complications arose. For the past couple months I've been getting progressively worse after having to eat carbohydrates. Right at the moment I've basically been only eating meat and drinking apple juice to get my sugar in. Simple sugars seem to not aggravate the condition as much as it gets absorbed quickly enough that my gut doesn't ferment it. But I still get issues with it that are significant.

Should I go through with the test? I want to eat enough to show the d lactate being excreted in the urine but not too much that it could do significant damage. I'm very fragile at the moment. Whenever I eat carbs I get severe neuro/cognitive issues, autonomic issues, acidosis, fatigue, and go into a coma like state among other symptoms. Each time I get worse and worse to the point that if I do it one more time I fear it may kill me. If I go through with it I feel like I'm going to have to be hospitalized to correct the acidosis and correct my gut issues. But I have little faith in the doctors as they are incompetent with issues like this and I've been in acidosis at the ER so many times without them investigating or doing anything. I'm very under weight and don't know what diet I should go on. My stomach, gut and gallbladder all work at like 5%. To the person wondering about CCI/AAI I'm 95% convinced this is caused by vagus nerve damage and brainstem dysfunction or at least in my case. It all controls how your stomach, gallbladder, liver, pancreas, and gut works. I believe the vagus also modulates the gut bacteria and microbiome. Any damage or dysfunction can cause many issues related to those organs. I developed ME/CFS after forceful chiropractic manipulations along with getting sick. I have upper cervical ligament damage and lower cervical instability confirmed by Digital motion X-Ray, CT, and MRI. I've been diagnosed with CCI, AAI, and subaxial instability by Dr. Gilete.

Anyways I'm running out of options on what to do here. I think I might have to try antibiotics just to do something because I'm running out of ideas. Don't know what antibiotics would be the best. Also going on an elemental diet I think.
The Gut Virome; missing link between Gut Bacteria and host immunity;


I am interested in what is common to ME/CFS, Long-Covid, and even Aids;

All three are related to Viral/Bacterial changes affecting the Gut leading to abnormal Microbiome and overlapping Gastrointestinal symptoms due to the necessity of the Virus to proliferate using two modes within Gut Bacteria that can advantaged host Bacteria through Phage activity; at the expense of the Symbiotic Microbiome.

I have had a theory (evolving) for some years that may relate Long-Covid and Symptoms of ME/CFS (even Aids) to the Viral Lysogenic cycle, where Host Bacteria may be advantaged by the Virus, in ability to destroy other bacteria not protected, enabling Dysbiosis or Overgrowth; because many ME patients relate their symptoms starting with E.B. Viral infections; and statistics show that a high percentage of ME develop Gastrointestinal symptoms including IBS and SIBO which are related to the production of Organic Neurotoxins that have a great deal in common with overlapping symptoms of ME/CFS and D-Lactic acidosis as demonstrated by Sheedy et al. Viral infections may facilitate ill health through Bacterial Overgrowth and Dysbiosis.

The ME Association can give a history of ME outbreaks associated with Viral infections; but the relationship of Viral Phages and infections with the Mictobiome that has barely been studied, understood or taken into consideration. There are more Viral Phages in the Gut than Bacteria, some that take part in regulating the Microbiome, but it is likely to be far vastly more complex than this, because even less of the Virome has been mapped than the Microbiome; and the complex relationships with the immune system policing, signalling, control of balance and destroying unwanted bacteria within this symbiosis of embedded Phage etc. has barely been understood.

Some Phages are necessary to the Microbiome and have existed as long as bacteria, both evolving from the first cellular life while bacteria have become more complex, Virus have become simpler, but both continue to interact especially in the Microbiome that has evolved over millions of years and I believe that the misunderstandings of Science are contributing to devolving these fragile ecosystems (devolving both complex internal and external ecosystems) that are leading to ill health; and ME may have been one of the first but overlooked clues.


The gut virome: the ‘missing link’ between gut bacteria and host immunity?
Indrani Mukhopadhya, Jonathan P. Segal, [...], and Georgina L. Hold

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6435874/

General Description;
''Eukaryotic viruses have an important impact on human health, ranging from mild, self-limited acute or chronic infections to those with serious or fatal consequences. Prokaryotic viruses can also influence human health by affecting the structure and function of bacterial communities that make up the human microbiome.


DNA and RNA viruses that collectively make up the intestinal virome outnumber bacterial cells by as much as 10:1, and include eukaryotic viruses which infect eukaryotic cells, endogenous retroviruses, bacterial viruses (i.e. bacteriophages) and archaeal viruses that infect archaea.

These virus-driven phenotypic changes can be beneficial to the host or increase the risk of disease.6
Currently, it is estimated that less than 1% of the virome has been sequenced, leaving the bulk of the virome yet to be characterized.8 ''

Hunter P. The secret garden’s gardeners: research increasingly appreciates the crucial role of gut viruses for human health and disease. EMBO Rep 2013; 14: 683–685. [PMC free article][PubMed] [Google Scholar]

Sequencing of eukaryotic viral communities in faecal samples from children has identified Picobirnaviridae, Adenoviridae, Anelloviridae and Astroviridae family members, and species such as bocaviruses, enteroviruses, rotaviruses and sapoviruses.12 In addition, disease-associated viruses such as herpesviruses, polyomaviruses, anelloviruses, adenoviruses, papillomaviruses, polyomaviruses, hepatitis B virus, hepatitis C virus and human immunodeficiency virus (HIV) are also present in the intestinal viromes of some individuals, indicating that the gastrointestinal (GI) tract contains viruses capable of infecting host cells. As the majority of humans remain asymptomatic it has been proposed that these pathogenic viruses (pathobionts) have become part of the metagenome of normal individuals, with the majority rarely causing disease and remaining dormant within the host.

I also had Glandular Fever at the point that my illness started; although there are a host of other causes of Bacterial Overgrowth including other underlying conditions such as Diabetes; I also had a lot of contact with Pesticides and dis-regulation of the microbiome may be multi factorial. But the above article indicates that Bacteria can be advantaged by some Phages that allow them to proliferate by destroying other Bacteria that are not protected by Phages thus altering the balance of the Microbiome (this on top of the huge amount of drugs and chemicals including Antibiotics that we take for granted, pass through and threaten the Microbiome; it is a wonder that more humans do not develop ME/CFS).

My theory relates to the drive or necessity of the virus to reproduce within Gut Bacteria, where the immune system may eventually deal with the Virus itself that has proliferated through the Lysing form of reproduction, but in Lysogenic cycle may have an advantage, where the drive of the Virus to reproduce through cloning or hijacking Bacteria may go undetected by the immune system if the Bacterial Hosts within the Gut are naturally found within this environment; that then go into overgrowth due to Viral drive or advantaged latency causing fluctuating abnormal organic acid production and symptoms of Bacterial Overgrowth which then act not as Symbiosis, but as a hidden infection (hidden because only the Organic Metabolites enter the bloodstream and spinal fluid to cause Flu like and Neurological symptoms; whereas no temperature is generated as in a normal infection, so that Doctors are unable to understand).


I had also been taking high doses of Non-Steroidals that inhibit COX 1&2 Prostaglandins and immune response for a number of years prior to the onset of illness and possibly during the period of E.B. infection. Non-Steroidal's may benefit those with overactive response to a Virus, but may be detrimental to those who have only mild symptoms by reducing immune response.

This is an ongoing discussion that can only advantage us as a species through so many minds working together to solve these complex issues; but it may be many decades before the Microbiome/Virome is fully understood and we only have primative tools such as Antibiotics and Probiotics that could possibly make things worse I still believe that FMT can shortcut decades of research by providing balanced microbiome and possibly even endow beneficial Phages.


I am looking forward to a time when a Superdonor's Microbiome can be grown to provide the best Probiotics, which would mean that even with underlying issues, you could replace or replenish your microbiome on a regular basis to live a healthier life.
 
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Thank you so much Paul for your information. I'm taking all this back to my gp to see if I can be referred. I've tried for 2 days with no carb but i feel so weak because of it... I'm at a loss and I know I need professional assistance. Thanks again for your help and time, Vicki
Recent discovery concerning Probiotics;

Hi Hopeful1976,
sorry, I should have replied some time ago. Things have changed for me with a recent discovery, but there may be no perfect one size fits all for everyone; You may be better off using a FODMAP diet, that utilizes Carbohydrates that do not ferment in the small intestine; avoiding Carbohydrates such as Bread, Pasta and Sugars etc. which rapidly cause me gastrointestinal symptoms such as reflux, bloating and discomfort and food not digesting properly or emptying from my stomach normally.

But recently I have found a way to use Probiotics to stop my symptoms, purely by chance; that has shown me that it may about quantify. It has also shown me that FMT may be my best hope, because FMT will continue to thrive whereas most Probiotics are only active for a period of time before they exit the Gut and have to be continually refreshed.

I have experimented with a number of different Probiotics and have had some success and also failures, where my symptoms have appeared to go into remission only to return suddenly and I had recently blamed a Symprove trial on worsening my symptoms, when I became very unwell while taking the prescribed dosage; but things are not always that simple and the issues with Bacterial Overgrowth including D-Lactic acidosis are extremely complex and not always what they seem.

I had thought that the D-Lactic producing bacteria in Symprove had caused my symptoms due to increased Overgrowth and I was due to see a consultant concerning FMT; I decided to show the consultant how bad my symptoms could become using Symprove and increased the dosage (doubled) for a few days prior to my appointment. I am not in a good position because I have been using Antibiotics to temporarily abate my symptoms when they occur and have gained increasing resistance; FMT is probably my best option. It is very hard without any Carbohydrates and I have used the FODMAP diet with reduced symptoms, but not total cure and it is difficult to steer clear of the worst Carbohydrates all of the time if there is nothing else available, and Antibiotics are the only way to stop a bad exacerbation quickly.


I was hoping to be able to demonstrate my symptoms and expecting the consultant to perform investigations including a Fecal Assay, but my appointment was cancelled due to Covid; and unexpectedly instead of becoming more unwell, I went into remission. I had doubled my dosage and soon after added other Probiotics and decided to add these also to increase both quantity and variety (all Probiotics that had been used for D-Lactic acidosis and Bacterial Overgrowth including Rhasmosus and Bifidobacterium breve). Remission has continued for at least 6 to 8 weeks, with symptoms only returning when I reduce the dosage, but it has been very expensive. I also added Symbioflor 2 (Escherichia Coli) which can reputedly remain in the Gut and encourage the growth of beneficial symbiotic species within the Gut.

During the period that I maintained a high dosage of a variety of Probiotics my symptoms went into remission and I was able to consume Carbohydrates and Sugars that would formerly have cause me to become very unwell. But it is also difficult to discern the best quality from the best sources.

Experimenting during this period I again lowered the dosage back to the prescribed dosage of Symprove only and my symptoms again returned; so I increased the dosage again resulting in remission.

It may be that some species such as Rhasmosus, Bifidobacterium breve and Escherichia Coli moderate, or encourage growth of beneficial species that stop fermentation and overgrowth, but the benefits of all but Escherichia coli may end soon after you stop taking them. This is an ongoing experiment and I have taken some risks in going back to a normal diet to test the Probiotics, but it has been worthwhile.

I had to conclude that my remission may be dosage dependent, but I need more time to be certain. The bad news is that I am running into debt. due to paying for a number of things including Private Doctors and Probiotics and have had no help from the NHS, who have told me that there is no proof of efficacy for Probiotics despite them being used for D-Lactic aciosis. I explained the severity of my symptoms to my local CCG but with no help or sympathy; they were resolute that I could not be prescribed Probiotics.

I also have a friend on this site who has very similar Gastrointestinal symptoms, but who reacts badly to Probiotics.

But I am looking forward to a time when we can obtain complex strains of naturally grown Probiotics from a Superdonor, one who is possibly endowed with beneficial phage virus that may also contribute to encouraging the growth of Gut Bacteria towards healthy Symbiosis. This would mean that even with underlying issues we could just replenish a healthy Gut.