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

Avenger

Senior Member
Messages
323
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

Hi, you do need to make sure that you do not have a condition such as Glycogen storage disease where Carbs are necessary and check with a Doctor. You could make a private appointment with Dr. Sarah Myhill. But if you suspect Bacterial Overgrowth you must ask for the appropriate tests. Go to Pals or Advocacy to help with a difficult Doctor.

But a diet without carbs and sugars should derive the necessary energy unless you have other underlying health issues? There is still a wide range of food that you can eat on a Stone Age Diet. I no longer miss Carbs as i used to.

You could also speak to a Dietitian, but you need to be assessed by a Gastroenterologist for Bacterial Overgrowth.

Paul.
 

ryan31337

Senior Member
Messages
664
Location
South East, England
I've tried for 2 days with no carb but i feel so weak because of it...

This is quite normal if you do it cold turkey. The weakness left me struggling to lift my hands to my head to wash hair when I went through it.

I'm not sure going cold turkey on carbs is the best idea unless you aim for ketosis by adding lots of fat into your diet. If you do this and achieve ketosis you'll feel an awful lot better after a few days.

If just aiming for a low carb, moderate fat diet I would try a more gradual reduction.

Ryan
 

Avenger

Senior Member
Messages
323
Hi, Ryan is correct, once you cut out carbs you can eat additional fat for energy (I eat a lot of Cheese and some Meat Fats). But you do need help from a professional and your doctor does not sound as if he is either interested or able. You need to be referred to a Gastroenterologist with your Gut symptoms to determine if the cause is Bacterial Ovegrowth.

If you are Diabetic and taking insulin you will need help with your diet because lowering Carbs can lead to hypoglycemia.

I suffered with Hypoglycemia due to Bacterial Overgrowth which just disappeared after starting the low Carb diet. All of my Gut problems (18 years) stopped after using the low Carb Diet including bloating, pain and problems with emptying my stomach (it was abnormally slow overnight leading to choking on regurgitated food).

If you have Bacterial Overgrowth you will need to lower Carbs/sugars as much as as possible. For D-La with neurological symptoms it can take 64 hours to stop the symptoms which include weakness and fatigue. You will then derive energy from Protein, Vegetables, Small amounts of low sugar fruits and Fats which do not produce D-Lactic acid.

There are many instances of D-La patients failing the Diet and becoming very unwell.

But you do need to be referred to a Gastroenterologist who specializes in Bacterial Overgrowth (one possibility would be Dr. Ray Shidrawi at the Homerton Hospital through the NHS or Private. It may be worth paying £200 to see him privately and then go through the NHS).

You do need professional help from a Gastroenteologist with your symptoms.

Paul
 

ryan31337

Senior Member
Messages
664
Location
South East, England
Hi Paul,

I think your advice is spot on, I've found (to my detriment) over the years that putting oneself on exclusion diets and the like before professional investigation makes finding the underlying cause almost impossible.

The only thing I would caution is assigning ALL of the blame on bacterial overgrowth. I'm not doubting that bacterial overgrowth causes many, many symptoms, but I think for most of us the overgrowth is a secondary result to some other primary pathology which needs to be identified for long-term improvement.

Its tricky to establish which is the horse and which is the jockey, especially when they overlap and contribute to each other, but in my case I'm fairly certain GI dysmotility as part of wider autonomic dysfunction is the root cause of my overgrowth. Cutting the carbs certainly helped calm the bacterial activity but I believe the major benefit came from the effects of low carb, high fat on abnormal gastric emptying. You might find this lecture interesting:

Ryan
 

Avenger

Senior Member
Messages
323
High Ryan,
I think your advice also is spot on.

Bacterial Overgrowth is always secondary to another problem, even motility (although having Bacterial Overgrowth can cause dysmotility through production of gasses which slow motility, setting up a negative spiral).

I have included 3 Report Abstracts including one from Boots which gives a general explanation. The last two reports are the most important and can be found in full online. The second states that Bacterial Overgrowth is more prominent than previously thought (Dr. Luke White also states that D-La is more prevalent than previously understood). The third Report gives a list of other health problems that are related or may cause Bacterial Overgrowth and states that Bac. O. is a poor prognosis of health and is likely to involve underlying health problems as you have pointed out.

Bacterial Overgrowth does not always cause Diarrhoea, it can also cause Constipation when more than one overgrowth are involved (Bacteria that live off Hydrogen producing Bacteria may produce Methane and Constipation so please do not exclude yourself if you do not suffer Diarrheoa).

Digestive health centre (Boots)

What is small intestinal bacterial overgrowth (SIBO)?

The small bowel, also known as the small intestine, is part of thedigestive system that connects the stomach with the large bowel (colon). The main purpose of the small intestine is to digest and absorb food into the body. The small bowel is divided into three parts: the duodenum (which food from the stomach empties into), the jejunum and the ileum (which empties undigested food into the large intestine or colon).

The entire gastrointestinal tract, including the small intestine, normally contains bacteria. The number of bacteria is greatest in the colon but much lower in the small intestine. Also, the types of bacteria within the small intestine are different to the types of bacteria within the colon. Small intestinal bacterial overgrowth (SIBO) refers to a condition in which abnormally large numbers of bacteria are present in the small intestine, while the types of bacteria found in the small intestine are more like the bacteria found in the colon.

Small intestinal bacterial overgrowth (SIBO) is also known as small bowel bacterial overgrowth syndrome (SBBOS).

What causes small intestinal bacterial overgrowth?
The gastrointestinal tract is a continuous muscular tube which digesting food travels along on its way to the colon. Normally, the coordinated action of the muscles of the stomach and small intestine propels the food from the stomach, through the small intestine and into the colon.

This muscular action also sweeps bacteria out of the small intestine and limits the numbers of bacteria in the small intestine. However, when a condition interferes with the normal activity in the small intestine, this can result in SIBO, by allowing bacteria to stay longer and multiply in the small intestine. The lack of normal muscular activity also may allow bacteria to spread backwards from the colon and into the small intestine.

Many conditions are associated with SIBO. A few are common:

  • Neurological and muscular diseases can alter the normal activity of the intestinal muscles. Diabetes mellitus damages the nerves that control the intestinal muscles. Scleroderma damages the intestinal muscles directly. In both cases, abnormal muscular activity in the small intestine allows SIBO to develop.
  • Partial or intermittent obstruction of the small intestine can interfere with the transport of food and bacteria through the small intestine and can result in SIBO. Causes of obstruction leading to SIBO include adhesions - or scarring - from previous surgery and Crohn's disease.
  • Diverticuli (small pouches) of the small intestine which allow bacteria to multiply inside diverticuli.
What are small intestinal bacteria overgrowth symptoms?
The symptoms of SIBO include:

When the overgrowth is severe and prolonged, the bacteria may interfere with the digestion and the absorption of food, so that deficiencies of vitamins and minerals may develop. Patients may also lose weight. Patients with SIBO sometimes also report symptoms that are unrelated to the gastrointestinal tract, such as body aches or fatigue. The symptoms of SIBO tend to be chronic (long-term). A typical patient with SIBO can experience symptoms that fluctuate in intensity over months, years or even decades, before a diagnosis is made.

Small Intestinal Bacterial Overgrowth
A Comprehensive Review
Andrew C. Dukowicz, MD, Brian E. Lacy, PhD, MD,
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and Gary M. Levine, MD
Author information ► Copyright and License information ►

This article has been cited by other articles in PMC.

Go to:
Abstract
Small intestinal bacterial overgrowth (SIBO), defined as excessive bacteria in the small intestine, remains a poorly understood disease. Initially thought to occur in only a small number of patients, it is now apparent that this disorder is more prevalent than previously thought. Patients with SIBO vary in presentation, from being only mildly symptomatic to suffering from chronic diarrhea, weight loss, and malabsorption. A number of diagnostic tests are currently available, although the optimal treatment regimen remains elusive. Recently there has been renewed interest in SIBO and its putative association with irritable bowel syndrome. In this comprehensive review, we will discuss the epidemiology, pathogenesis, clinical manifestations, diagnosis, and treatment of SIBO.

Keywords: Bacterial overgrowth, small intestinal bacterial overgrowth, diarrhea, bloating, motility disorders, antibiotics
Small intestinal bacterial overgrowth (SIBO) is defined as the presence of excessive bacteria in the small intestine. SIBO is frequently implicated as the cause of chronic diarrhea and malabsorption. Patients with SIBO may also suffer from unintentional weight loss, nutritional deficiencies, and osteoporosis. A common misconception is that SIBO affects only a limited number of patients, such as those with an anatomic abnormality of the upper gastrointestinal (GI) tract or those with a motility disorder. However, SIBO may be more prevalent than previously thought. This apparent increase in prevalence may have occurred, in part, because readily available diagnostic tests have improved our ability to diagnose SIBO. This comprehensive review will discuss the epidemiology and pathophysiology of SIBO; review common clinical presentations, diagnostic tests, and their limitations; and discuss currently available treatment options.

Small intestinal bacterial overgrowth syndrome
Jan Bures, Jiri Cyrany, Darina Kohoutova, Miroslav Förstl, Stanislav Rejchrt, Jaroslav Kvetina, Viktor Vorisek, and Marcela Kopacova
Author information ► Article notes ► Copyright and License information ►
This article has been cited by other articles in PMC.

Go to:
Abstract
Human intestinal microbiota create a complex polymicrobial ecology. This is characterised by its high population density, wide diversity and complexity of interaction. Any dysbalance of this complex intestinal microbiome, both qualitative and quantitative, might have serious health consequence for a macro-organism, including small intestinal bacterial overgrowth syndrome (SIBO). SIBO is defined as an increase in the number and/or alteration in the type of bacteria in the upper gastrointestinal tract. There are several endogenous defence mechanisms for preventing bacterial overgrowth: gastric acid secretion, intestinal motility, intact ileo-caecal valve, immunoglobulins within intestinal secretion and bacteriostatic properties of pancreatic and biliary secretion. Aetiology of SIBO is usually complex, associated with disorders of protective antibacterial mechanisms (e.g. achlorhydria, pancreatic exocrine insufficiency, immunodeficiency syndromes), anatomical abnormalities (e.g. small intestinal obstruction, diverticula, fistulae, surgical blind loop, previous ileo-caecal resections) and/or motility disorders (e.g. scleroderma, autonomic neuropathy in diabetes mellitus, post-radiation enteropathy, small intestinal pseudo-obstruction). In some patients more than one factor may be involved. Symptoms related to SIBO are bloating, diarrhoea, malabsorption, weight loss and malnutrition. The gold standard for diagnosing SIBO is still microbial investigation of jejunal aspirates. Non-invasive hydrogen and methane breath tests are most commonly used for the diagnosis of SIBO using glucose or lactulose. Therapy for SIBO must be complex, addressing all causes, symptoms and complications, and fully individualised. It should include treatment of the underlying disease, nutritional support and cyclical gastro-intestinal selective antibiotics. Prognosis is usually serious, determined mostly by the underlying disease that led to SIBO.

Keywords: Bacterial overgrowth, Breath test, Hydrogen, Methane, Small intestine
Go to:
INTRODUCTION

Hope this is helpful to all trying to understand how Bacterial Overgrowth and D-La fit with CFS/ME symptoms (for those affected).

Paul.
 

Avenger

Senior Member
Messages
323
Hi, it can take 64 hours or more on 0% to stop symptoms of Bacterial Overgrowth and D-La with an exclusion diet. If you have severe symptoms of Bacterial Overgrowth or D-La Antibiotics may have to be used until the diet can stop the symptoms. Sometimes they have to be used once a month cyclically (non absorbable antibiotics that remain in the Gut).

But Diet alone can stop both D-La and B.Overgrowth. Do discuss with your Doctor first. Show the Doctor some of the report abstracts that correlate to your symptoms (that is what i did) and ask for a second opinion from a Consultant Gastroenterologist.

The aim of 4 to 6 weeks is to be absolutely sure. You must be sure that you can undergo a 0% Carb/Sugar diet and that it is not detrimental to another underlying condition such as Glycogen Storage Disease or Diabetes etc. You could have another problem and just happen to be in remission, so a longer period will help determine Bacterial Overgrowth. If all of your Gut problems, bloating, fatigue, hypoglycemia, pain weakness and other problems stop with the diet you can go back to your Doctor and ask for a Gastroenterologist or have Hydrogen Methane breath tests done by a Gastro before starting the diet.

If you have bad Gut symptoms it is probably worth making a private appointment with a Gastroenterologist who specializes in Bacterial Overgrowth. I guessed that I had D-La because I had both bad Gut problems and D-La neurological symptoms and made a private appointment with a D-La Consultant out of county, because i was getting no where at my local hospital. Doctors are just not trained (Dr. Myhill specialises in these problems and diet for CFS/ME is a similar exclusion diet. She is probably the most intelligent Doctor that I have ever met).

Go to Dr. Myhill's website for further reading on Bacterial Overgrowth, D-La and diet. Just reducing Carbs or getting them as low as possible will help, but if you have D-La you will need to aim for 0% for the trial to eliminate the production of D-La. The Diet is essentially a 'Stone Age Diet' and optimal healthy diet for most ME/CFS.

But you must discuss dietary changes with your Doctor in case of any other underlying issues, even if unssuportive.

Paul
 

cigana

Senior Member
Messages
1,095
Location
UK
I think all of this depends on the type of bacterial overgrowth. For example, Pimentel, who focuses on hydrogen-sulfide and methane producing bacteria, doesn't really see a huge benefit from a low-carb diet for SIBO, but 14 days elemental diet works to remove about 80% of the overgrowth.
Antibiotics have to be very specific to the problem bacteria.
 
Last edited:

Avenger

Senior Member
Messages
323
Hi, yes there may be a number of types of Bacterial Overgrowth producing different toxins. Hydrogen and Methane and D-La producing Bacteria may also produce a number of other toxins according to Sheedy (2017). I am guessing that there may also be different forms of ME/CFS some may have milder forms and others more serious. D-La is just one form of SIBO.

My own belief is that any form of Overgrowth is an infection and acts as an infection producing toxins that make it very difficult to live. I have not read Pimintel (thank you) but if 10% of Bacteria are left, would the overgrowth not just come back due to the underlying problem causing it?

Antibiotics may also cause Bacterial Overgrowth through selection and resistance and be a possible contributing factor or reason for SIBO variations. Antibiotic treatment for Bacterial Overgrowth can also lead to Resistance. It is extremely complex and there are many conflicting opinions. There is little or no full understanding.

Treatment is not the same for everyone due to different underlying causations of SIBO. But Diet or Antibiotics may be necessary for life with D-La. I have tried just about everything except fecal transplant. I have been unable to eradicate the problem.

I had to investigate my own symptoms and I am still experimenting. I was extremely lucky to get a diagnosis and was close to suicide because I could no longer control the symptoms with antibiotics cyclically.

I was offered only cyclical antibiotics by the first Gastroenterologist who i saw, but became resistant and was not responding to antibiotics. Some may have permanent remission, but others many have to continue taking cyclical antibiotics for life. It is most important to gain a diagnosis and understanding of the underlying cause (mine has not yet been found).

I had to research my own problems and can not imagine how others could exist with such traumatic symptoms or pain.

Without the diet I would be very unwell with often serious neurological symptoms and pain. All of the Gastrointestinal problems including hypoglycemia have also stopped. It is important for any CFS/ME to have Gastro Symptoms fully investigated and most Doctors just do not understand the serious implications of SIBO.

Paul.
 

nanonug

Senior Member
Messages
1,709
Location
Virginia, USA
Treatment is not the same for everyone due to different underlying causations of SIBO. But Diet or Antibiotics may be necessary for life with D-La. I have tried just about everything except fecal transplant. I have been unable to eradicate the problem.

Fecal transplant won't do anything for SIBO. As you say, right now, a low residue diet or antibiotics are the only thing that help. According to Pimentel, SIBO is caused by an auto-immune disease in the small intestine. Last time I checked, he was developing a medication to treat the problem. He also developed a blood test called IBSDetex to diagnose the problem.
 

Avenger

Senior Member
Messages
323
Hi, Fecal Transplants work but only temporarily for a number of months before Overgrowth recurs, so there has to be one or more underlying cause if symptoms abate only to return. Finding the underlying cause is the most important aspect. I am looking at Pimintel now.

I have also been found to have mild Hypogammaglobulinaemia IgM. I noticed a number of immune abnormalities in my records and asked for further tests. SIBO is also known to cause autoimmune disorders due to damage to the mucosal lining and Bacteria entering the Blood Stream...... Could this be a self perpetuating form of negative feedback?

The most interesting question is why the Overgrowth occurs in the first place and cannot be controlled by the immune system policing symbiotic bacteria. I have so many questions. What occurs to tip the balance? Some antibiotics such as Metronidazole affect the immune system and reduce immune activity and inflammation. We overuse so many antibiotics in agriculture and medicine.....

This research by Pimintel is really interesting and hopefully may result in a cure. At least competent research has started.

Paul
 

Avenger

Senior Member
Messages
323
Hi, It is a possible explanation, but as yet a hypothesis. It is well known that Autoimmune Disease is related to SIBO. I think that they have a way more to go and await a cure, but the direction seems to be very encouraging.

I do not think that it will be long before there is a full explanation for a number of Bacterial Overgrowth related illness and a cure for D-La. The race is on....
 

cigana

Senior Member
Messages
1,095
Location
UK
I have not read Pimintel (thank you) but if 10% of Bacteria are left, would the overgrowth not just come back due to the underlying problem causing it?
Yes, it virtually always does just come back, and the reasons for that are what Pimentel now focusses on (see this for some of his latest thinking). Main underlying cause seems to be lack of cleaning waves (probably related to lack of vagus nerve stimulation). Getting it down to 10% can give you remission, and using prokinetics extends the time before the next relapse.
(This is all relevant to IBS caused by BO, not sure it applies to those diagnosed with D-La...)
 

Avenger

Senior Member
Messages
323
Yes, it virtually always does just come back, and the reasons for that are what Pimentel now focusses on (see this for some of his latest thinking). Main underlying cause seems to be lack of cleaning waves (probably related to lack of vagus nerve stimulation). Getting it down to 10% can give you remission, and using prokinetics extends the time before the next relapse.
(This is all relevant to IBS caused by BO, not sure it applies to those diagnosed with D-La...)

Hi, this fits. I developed motility problems from the point of falling ill in 1999! (I was also later diagnosed with Autonomic Dysfunction). I have long realized that the gasses produced by Bact. Overgrowth can decrease motility especially Methane which piggybacks or lives off Hydrogen producing Bacteria.

I have already asked my Doctor for motility tests but they are only happy to continue my treatment using antibiotics and Exclusion Diet. I do not think that Doctors has been trained to understand these problems and finding the underlying causation is most important. I was hoping to try autonomic drugs to increase motility to see if I can stop the negative cycle. It has been DIY all the way since falling ill and I have had to ask for my own tests and referrals and fortunately guessed correctly. But I am not satisfied with Treatment, I want a cure and experimenting with everything from pre and specific probiotics and Enzymes to help digestion to see if I can break the cycle if there is one.

There is also a huge list of other problems that can cause Bacterial Overgrowth so this may not be the same for everyone.

Paul