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.