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

leokitten

Senior Member
Messages
1,541
Location
U.S.
Great thread... what I find particularly interesting is not only the symptom overlap but also that research suggests the d-lactate directly or indirectly interferes with pyruvate dehydrogenase (PDH) and pyruvate metabolism.

So this could be an interesting bridge to the ME mitochondrial metabolic dysfunction findings showing impaired pyruvate metabolism.
 

Avenger

Senior Member
Messages
323
Hi Leokitten,
Your message is Very Interesting (I have replied below my apology)!

I am sorry that I have not answered anyone for a while but I am in a major battle with the NHS who are doing everything that they can to deny that I have been mistreated in any way, when they gave me a formal psychological diagnosis for the same illness 18 years ago (Somatization Disorder, which means that the pain and symptoms are generated by the brain and can be controlled with 'Cognitive Behavioral Therapy' and Execrcise). There has been serious dishonesty bordering on fraud:

The Somatization diagnosis meant that no one would take frequently traumatic and serious symptoms seriously, because the Somatization had been taken as my diagnosis.

On one occasion after going to A&E very unwell and with breathing difficulty, I was left in a private Room on my own, without observation or investigations or being offered fluids vital for D-Lactic symptoms, in pain and 'suffocating' due to acidosis, for over 9 or more hours without seeing a Doctor or any Staff.

I had a very good Doctor for 14 year, who I moved to shortly after being given the Somatization diagnosis in 2001 which was given under extremely dubious circumstances (I had raised ALT and frequent raised CK levels when they diagnosed Somatization because the Doctors concerned were not capable of diagnosing either Bacterial Overgrowth or D-Lactic acidosis, which I had to do myself).

Three Doctors including a Hospital Consultant, had made statements that I was not Somatizing from 2002! All requested Blood Gasses and even after formal letters requesting Blood Gasses, were never performed or investigated in A&E during many hundreds of frequent episodes and frequent illness, because the misdiagnosed Somatization disorder had been placed in my 'Significant Medical History' to all Services (which I have only recently been made aware of).

My 'Significant Medical History' to all Services which I have only recently been given a copy of by my Doctor (who has now annotated my records that the Somatization diagnosis was misdiagnosed) is the subject of gross dishonesty, bordering on fraud by the NHS, because the Pain Clinic Doctor who had misdiagnosed the Somatization disorder had made a number of totally dishonest statements for the NHS Complaint Reply concerning the Somatization that he had misdiagnosed;

The Doctor had stated in the Complaint Reply from the NHS that the Somatization diagnosis 'would not have affected my care for so long or have caused any delay in diagnosis, because it was only written on two scraps of paper lost withing four volumes', when the Doctor had placed it at the top of my 'Significant Medical History' to all Services and was the reason that A&E and many other Doctors who saw me had taken it as my diagnosis.

The same Doctor had aggressively pursued the Somatization and had also written to a number of Doctors asking that I would not be given further investigations or appointments.


He has also made a number of other dishonest statements including stating that he had sent me to see a Clinical Psychologist first. He made the diagnosis prior to her assessing me. The Clinical Psychologist asked for further investigation which was never carried out by A&E because they had taken the Somatization as my diagnosis.......

I went for Shoulder Surgery last year 4 months after D-Lactic diagnosis, expecting that it was all finally over and to be treated normally But...
No one had been told of my diagnosis prior to Surgery (D-la can be fatal, but could pose a major complication for surgery). After Surgery I had breathing difficulty and was kept in for 3 days. The Ward Doctor refused to believe that I had been diagnosed with D-Lactic acidosis (the Somatization was still active in my records) and proceeded to give me Oramorph Analgesic loaded with Sucrose and I fell ill in Hospital. I told Doctor and Staff that I could not have Carbohydrates or Simple Sugars, but they would not listen and I had to ask for all analgesia to be stopped and left Hospital very unwell and in agony from a large Shoulder Tear that had separated from the bone and required metalic implants. I had antibiotics at home and had to use these to stop the symptoms which I had on top of pain after surgery.

I had worked as a Sculptor and lifted very heavy weights before falling ill in 1999. I had two extremely large shoulder tears that require metallic implants and a fully collapsed disc with nerve root compression that requires Spinal Fusion that started in the early 1990's. These injuries also became included as 'Chronic Fatigue' or Somatic pain and I have had to wait over two decades to have surgery. I have recently been told by the Gastroenterologists who diagnosed D-La, that the NSAID's which had been given for pain had caused a Bowel Perforation at the time that the D-Lactic symptoms had started in 1999.

The Chief Executive wrote in reply, after I made a complaint after Surgery in February 2017, that it was not necessary to take D-Lactic acidosis into consideration because I did not have such a diagnosis! My Gastroenterologist responded by giving me a letter to carry at all times and he wrote in another letter that the D-Lactic symptoms had been the cause of my illness for nearly 20 years.

I am still fighting, no apology and they have not admitted any fault!!!

If any of you finally gain a diagnosis then you may have to go through further abuse from the NHS. I am probably the first to gain a diagnosis and they are still fighting and seem to have lost all reason.

I would advise any who have been mistreated to ask for a copy your 'Significant Medical History to all Services' from your Doctor. Somatization in your records will cause you not to be taken seriously for any other problems.


Back to your message;
The cause of my D-Lactic acidosis has not been found, but has been related to Bowel perforation after being given prolonged NSAIDs (I had also been given Antibiotics before becoming unwell). Any form of Bacterial Overgrowth is normally associated with underlying illness including Diabetes. But D-La can also be a self maintaining condition, because gasses including either or both Methane and Hydrogen cause changes to Gut Motility and can maintain conditions that benefit Overgrowth causing a self maintaining negative feedback spiral.

But the fact that D-La interferes with the Pyruvate dehydrogenase chain means that it can stop any ability to get rid of D-Lactic acid is very interesting. I do not think that anyone has checked my Thiamine levels. Thiamine deficiency can also lead to failure of the Pyruvate Chain. Because D-La is a form of poisoning causing multiple neurological symptoms it can affect any if not all organs an systems simultaneously during periods of exacerbation or milder symptoms (especially after large Carbohydrate Meals or Sugars). But if you suffer with diarrhea due to Overgrowth you may have Thiamine and other vitamin deficiencies.

I have D-La without short bowel and have been trying to learn as much as possible to try to find a permanent cure for myself. The Diet helps greatly but is not a permanent cure and any time that I am forced to use Carbohydrates, illness returns (I found it difficult while away on holiday to get food free from Carbohydrates and recently my Freezer broke down just before a Bank Holiday and took two months to get a replacement........) and I have been forced to use antibiotics to stop the symptoms which can quickly escalate.

I have been looking for methods to break what i see as a possibly self maintaining loop (negatively self maintaining feedback loop).

I am seeing my Consultant and will ask for a Fecal implant which I know may not be a permanent cure, but I will ask if I can have regular Fecal Implants instead of being offered Antibiotics which may result in total resistance for other infections at some point in the future. There is evidence of some permanent cures from Fecal Implants but also evidence that it will only produce a temporary 'cure' in others.

This may be due to the underlying cause of D-La which can result from many other disease processes or simply from poor motility caused by Bacterial Overgrowth ( Bacterial Overgrowth alone can cause symptoms of Chronic Fatigue and anyone with Bacterial Overgrowth is at risk for developing D-Lactic acidosis).

My belief is that D-Lactic acidosis may well have been the cause of death in some patients, especially those who have suffered undiagnosed Neurological symptoms. I have not come across any Doctors who have an understanding of D-La and so it will remain under-diagnosed.

Paul.
 

leokitten

Senior Member
Messages
1,541
Location
U.S.
Dear @Avenger - sorry if I missed it in this thread, specifically how did you get diagnosed with d-lactic acidosis? For example, what blood or urine tests did they run, etc?
 

Avenger

Senior Member
Messages
323
Dear Jes,
it is possible that we are both correct. That Bacterial Overgrowth and D-Lactic Acidosis is the cause of ME/CFS in some patients, and that Viral Outbreaks have also been found during ME/CFS outbreaks.

Bacteria in the Gut may be the vehicle for Viral multiplication as in aids, where Gut Bacteria are used by the Virus to survive and propagate. If Viruses propagate in this way they may overcome the controlling balance concerning cooperative or symbiotic Gut Flora.

One question is how do antibiotics affect Bacteria that have been 'infected' by Viruses?

HIV acts in two stages, starting in the Gut with HIV Virus that infiltrates Gut Bacteria and damages and penetrates Gut Mucosa prior to becoming AIDs, and it is now believed that HIV starts in the Gastrointestinal Tract (and may explain the predominance of disease within the Gay community, no slur intended).

HIV Virus as with any virus cannot survive except within a cell and the vehicle for survival in HIV is from within Gut Flora prior to penetrating Gut Mucosa Cells. This may be the reason for abnormal Bacterial Overgrowth which may also be how HIV Virus reproduces, through Overgrowth ( I am seeing Bacterial Overgrowth as an infection for both HIV, D-Lactic acidosis and for Bacteria involved in IBS).

Viruses can only multiply within cells and there is the possibility that Bacterial Overgrowth may be due to Viruses causing the Overgrowth due to the changes made to Bacterial DNA and RNA by these Bacteriophages.

Human Immunodeficiency Virus-Associated Gastrointestinal Disease: Common Endoscopic Biopsy Diagnoses
Feriyl Bhaijee, 1 ,* Charu Subramony, 1 Shou-Jiang Tang, 2 and Dominique J. Pepper 2
Author information ► Article notes ► Copyright and License information ► Disclaimer
This article has been cited by other articles in PMC.

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Abstract
The gastrointestinal (GI) tract is a major site of disease in HIV infection: almost half of HIV-infected patients present with GI symptoms, and almost all patients develop GI complications. GI symptoms such as anorexia, weight loss, dysphagia, odynophagia, abdominal pain, and diarrhea are frequent and usually nonspecific among these patients. Endoscopy is the diagnostic test of choice for most HIV-associated GI diseases, as endoscopic and histopathologic evaluation can render diagnoses in patients with non-specific symptoms. In the past three decades, studies have elucidated a variety of HIV-associated inflammatory, infectious, and neoplastic GI diseases, often with specific predilection for various sites. HIV-associated esophageal disease, for example, commonly includes candidiasis, cytomegalovirus (CMV) and herpes simplex virus (HSV) infection, Kaposi's sarcoma (KS), and idiopathic ulceration. Gastric disease, though less common than esophageal disease, frequently involves CMV, Mycobacterium avium-intracellulare (MAI), and neoplasia (KS, lymphoma). Small bowel biopsies and intestinal aspirates from HIV-infected patients often show HIV enteropathy, MAI, protozoa (Giardia, Isospora, Cryptosporidia, amebae, Microsporidia), and helminths (Strongyloides stercoralis). Colorectal biopsies demonstrate viral (CMV, HSV), bacterial (Clostridia, Salmonella, Shigella, Campylobacter

Paul.
 

Avenger

Senior Member
Messages
323
Dear @Avenger - sorry if I missed it in this thread, specifically how did you get diagnosed with d-lactic acidosis? For example, what blood or urine tests did they run, etc?

Dear All,
I have been ill with ME/CFS symptoms and even diagnosed with Fibromyalgia for 18 years but was recently diagnosed as D-Lactic acidosis.

I have recently been formally diagnosed with D-Lactic acidosis (without short bowel syndrome) in February 2017. The same symptoms were misunderstood or ignored by Doctors for so long because all other tests had been virtually normal.

I have been trying to make others aware of the similarity of ME/CFS and D-Lactic acidosis that Sheedy et al have written about and reported on after finding D-Lactic producing bacteria in CFS patients (abstract report below).

D-La can be a very serious condition and I had neurological symptoms very similar to Jennifer Bria which would fluctuate from mild to extreme and had varying symptoms ranging from muscle pain and weakness, slurred speech, difficulty thinking to confusion, fatigue and breathing difficulty as though I had climbed a mountain without oxygen, hypoglycemia or dizziness along with abdominal symptoms, difficulty after eating carbohydrates and periods of sometimes severe abdominal pain and sickness.

I was diagnosed after noticing that my symptoms would temporarily stop after using antibiotics (metronidazole). I made an appointment with a Consultant Gastrointerologist who specializes in D-Lactic acidosis and was virtually diagnosed on the spot because due to my symptoms and response to antibiotics. In D-La Carbs and sugars cannot be properly metabolized and cause fluctuating levels of D-Lactic acid which can be found in spinal fluid causing neurological symptoms which act much like a poison. D-Lactic acidosis acts much like an infection due to massive overgrowth of D-Lactic producing Bacteria found mainly in the small intestine. But the 'infection' or Overgrowth remains in the Gut and only the metabolites produced can be found in the Blood Stream and in Spinal Fluid causing fluctuating levels of D-Lactic acid and fluctuating levels of multiple systemic neurological symptoms as in ME/CFS.

Anyone with these symptoms or who respond to antibiotics can test themselves for D-La through total 0% abstention diet for all Carbohydrates and simple sugars. Results can take 64 plus hours and remaining on the diet for 4 to 6 weeks could be life changing as it was for me! Dr. Sarah Myhill has been advising the same diet for ME/CFS patients for years. The diet is difficult and symptoms will return if it is failed, even small amounts of Carbs and Sugars can cause the return of symptoms. The diet should only be considered after consulting a Doctor to make sure that it is appropriate.

Increased D-Lactic Acid Intestinal Bacteria in Patients with Chronic Fatigue Syndrome
  1. JOHN R. SHEEDY1,
  2. RICHARD E.H. WETTENHALL1,
  3. DENIS SCANLON2,
  4. PAUL R. GOOLEY1,
  5. DONALD P. LEWIS3,
  6. NEIL MCGREGOR4,
  7. DAVID I. STAPLETON1,
  8. HENRY L. BUTT5 and
  9. KENNY L. DE MEIRLEIR6
+Author Affiliations

  1. Kenny.De.Meirleir@vub.ac.be

Next Section
Abstract
Patients with chronic fatigue syndrome (CFS) are affected by symptoms of cognitive dysfunction and neurological impairment, the cause of which has yet to be elucidated. However, these symptoms are strikingly similar to those of patients presented with D-lactic acidosis. A significant increase of Gram positive facultative anaerobic faecal microorganisms in 108 CFS patients as compared to 177 control subjects (p<0.01) is presented in this report. The viable count of D-lactic acid producing Enterococcus and Streptococcus spp. in the faecal samples from the CFS group (3.5×107 cfu/L and 9.8×107 cfu/L respectively) were significantly higher than those for the control group (5.0×106 cfu/L and 8.9×104cfu/L respectively). Analysis of exometabolic profiles of Enterococcus faecalis and Streptococcus sanguinis, representatives of Enterococcus and Streptococcus spp. respectively, by NMR and HPLC showed that these organisms produced significantly more lactic acid (p<0.01) from 13C-labeled glucose, than the Gram negative Escherichia coli. Further, both E. faecalis and S. sanguinis secrete more D-lactic acid than E. coli. This study suggests a probable link between intestinal colonization of Gram positive facultative anaerobic D-lactic acid bacteria and symptom expressions in a subgroup of patients with CFS. Given the fact that this might explain not only neurocognitive dysfunction in CFS patients but also mitochondrial dysfunction, these findings may have important clinical implications.

 

leokitten

Senior Member
Messages
1,541
Location
U.S.
Dear All,
I have been ill with ME/CFS symptoms and even diagnosed with Fibromyalgia for 18 years but was recently diagnosed as D-Lactic acidosis.

I have recently been formally diagnosed with D-Lactic acidosis (without short bowel syndrome) in February 2017. The same symptoms were misunderstood or ignored by Doctors for so long because all other tests had been virtually normal.

I have been trying to make others aware of the similarity of ME/CFS and D-Lactic acidosis that Sheedy et al have written about and reported on after finding D-Lactic producing bacteria in CFS patients (abstract report below).

D-La can be a very serious condition and I had neurological symptoms very similar to Jennifer Bria which would fluctuate from mild to extreme and had varying symptoms ranging from muscle pain and weakness, slurred speech, difficulty thinking to confusion, fatigue and breathing difficulty as though I had climbed a mountain without oxygen, hypoglycemia or dizziness along with abdominal symptoms, difficulty after eating carbohydrates and periods of sometimes severe abdominal pain and sickness.

I was diagnosed after noticing that my symptoms would temporarily stop after using antibiotics (metronidazole). I made an appointment with a Consultant Gastrointerologist who specializes in D-Lactic acidosis and was virtually diagnosed on the spot because due to my symptoms and response to antibiotics. In D-La Carbs and sugars cannot be properly metabolized and cause fluctuating levels of D-Lactic acid which can be found in spinal fluid causing neurological symptoms which act much like a poison. D-Lactic acidosis acts much like an infection due to massive overgrowth of D-Lactic producing Bacteria found mainly in the small intestine. But the 'infection' or Overgrowth remains in the Gut and only the metabolites produced can be found in the Blood Stream and in Spinal Fluid causing fluctuating levels of D-Lactic acid and fluctuating levels of multiple systemic neurological symptoms as in ME/CFS.

Anyone with these symptoms or who respond to antibiotics can test themselves for D-La through total 0% abstention diet for all Carbohydrates and simple sugars. Results can take 64 plus hours and remaining on the diet for 4 to 6 weeks could be life changing as it was for me! Dr. Sarah Myhill has been advising the same diet for ME/CFS patients for years. The diet is difficult and symptoms will return if it is failed, even small amounts of Carbs and Sugars can cause the return of symptoms. The diet should only be considered after consulting a Doctor to make sure that it is appropriate.

@Avenger sorry to bug about this, and sincere apologies if my eyes are fooling me, but I do not see anywhere in your posts exactly how you were definitively diagnosed with d-lactic acidosis. Having a response to metronidazole (or any antibiotic) is not necessarily indicative of this disease, it could be any number of things.

I would think the only way to be definitely diagnosed is via a d-lactate blood test (using mass spec I think) or possibly from measuring urine metabolites. Otherwise, I’m not sure a doctor or patient will know exactly what’s going on?

Looking at d-lactic acidosis symptoms, there are some that are definitely not always found in ME/CFS, did you have very specific symptoms that correlated or just symptoms that usually overlap with ME/CFS?
 

Avenger

Senior Member
Messages
323
Hi, I was diagnosed by a Consultant Gastroenterologist specialising in D-La. My symptoms had been classic for D-La for many years including frequent drunk like confusion and breathing difficulty and a host of D-Lactic neurological symptoms.

The Consultant was beyond certain and based this on my response to antibiotics, because all of my symptoms stop after antibiotics. Due to the severity I was given treatment before any investigations and I am given cyclical antibiotics. I had Seizures in A&E. The Consultant has based my diagnosis on my history.

I kept telling Doctors that I felt as if I had an infection during episodes, but i never had any temperature. D-La causes infection or flu like symptoms which quickly escalate but without producing any raise in temperature. As far as I am concerned the overgrowth acts as an infection, but only the metabolites leave the gut and the immune system is not activated (except when the overgrowth produces leaky gut due to mucosal damage and this may cause autoimmune problems and illness).

Blood Gasses are only taken during dangerous exaccerbations and I have to carry a letter requesting Blood Gas investigations if I cannot control the symptoms myself. I have also responded to 0% Cabohydrate Diet an 0% Simple Sugars, but I become ill within 2 to 3 days of using Carbohydrates and it can become severe very quickly.

My symptoms and illness was severe and I was expecting to die. My symptoms looked similar to the worst ME/CFS patients, those with neurological symptoms.

I am guessing that you can have different levels of Overgrowth which may reflect severity.

D-La is very rarely diagnosed because most Doctors cannot recognize it. My belief is that this is why ME/CFS is underdiagnosed. I see milder problems as more benign Bacterial Overgrowth and the more severe problems causing neurological symptoms as D-Lactic acidosis. There may be other forms and mixed Overgrowths causing variations within ME/CFS.

My belief along with Sheedy et al. is that D-La is far more common, just underdiagnosed. You can live with very severe symptoms as I had for 18 years and I was given a Somatization diagnosis (psychological diagnosis) 17 years ago which hampered getting a proper diagnosis .

Interesingly, I read in the daily mail that Jennifer Bria is also taking antibiotics.


Paul.
 

Avenger

Senior Member
Messages
323
Hi, Leokitten, I forgot to add that i had been diagnosed with ME on a number of occasions.

Most of my symptoms are similar to ME/CFS, but they can escalate and become severe.

I had periods of hypoglycemia, headaches, muscle aches and fatigue without having been active, flu like symptoms with pinprick sensations and muscle weakness, abdominal pain, gastrointestinal symptoms (such as abdominal swelling or bloating, severe reflux and feeling sick) and memory difficulty. This varied from day to day.

My illness came with constipation. D-La can cause either diarrhea or constipation.

My symptoms looked and sounded like Jennifer Brias at times.

I could not recover from activity, worse on some days and better on others. I could also be severely incapacitated and bedridden and in agony. I had periods of memory problems that were much the same as ME/CFS, but i also had a number of periods when I became badly confused and my memory would become so bad that I managed to get lost in my own town. I could have severe problems for 10 minutes or hours or days or even months.

My symptoms felt systemic like flu, but could escalate to far more severe symptoms, such as hypoglycemia, breathing difficulty, confusion and slurred speech and Seizures.

Hypoglycemia happened as my illness worsened and I believe due to either the levels of Overgrowth or the Level of Carbohydrates and Sugars.

Hypoglycemia, reflux and all of the worst Gastrointesinal symptoms stop after using a 0% Carb and Sugar diet. They also stop after using antibiotics. Just lowering Carbohydrates stopped Hypoglycemia symptoms which the Gastroenterologist explained is caused by Bacteria competing for Carbs and Sugars in the Small Intestine. Hypoglycemia happens with non D-Lactic Bacterial Overgrowth as well.

Paul.
 

leokitten

Senior Member
Messages
1,541
Location
U.S.
@Avenger thank you very much for all the details :). I totally agree that there could be a significant subgroup of PWME who actually have subclinical d-lactic acidosis or even full blown such as yourself and it's getting misdiagnosed as ME. It makes a lot of sense, including the fact that disease severity could be driven by the amount of bacterial overgrowth and d-lactate entering the blood stream as well as research suggesting the d-lactate directly or indirectly interferes with pyruvate dehydrogenase (PDH) and pyruvate metabolism.

My symptoms overlap with many of those you wrote, especially the sometimes rapid fluctuation and changes. I'm sure many others here would say the same. Among all the ME symptoms I have that overlap, I've also always had balance and equilibrium problems since getting ME. I've read that the cerebellum has particular problems with d-lactate given the tissue's lower levels of PDH.

For a long while I've become intolerant to carbohydrates and eating a regular healthy diet with typically 50% carbs I believe was one of the major causes of my worsening disease severity. It just took me a long time to make the connection that what I was eating was likely contributing to my symptoms. I do much better when fasting and eating a ketogenic diet, so I'm very interested in your story because all data points line up with the hypothesis.

Sorry to bug again, I just have a couple specific food questions. Can you eat fiber or cheese? I've had trouble finding on the web whether these two make d-lacate bacterial overgrowth worse.
 

Avenger

Senior Member
Messages
323
Hi, Leokitten,
please do not apologize! I am only on this site to help others. I am trying to get an awareness of the possibility of different subgroups caused by bacterial overgrowth. It would be unthinkable to just walk away when so many others are suffering, some of them as I was. D-Lactic symptoms when acute can be terrifying and affect every organ including the brain and continued acidosis can lead to cell damage which cannot be replaced in the brain (early dementia). Bacterial Overgrowth can make your life miserable and cause chronic fatigue and muscle pain etc. even when mild. D-La can be seen as poisoning or as an infection due to Overgrowth without any raise in temperature. It is most certainly only found in Short Bowel Syndrome and there are a list of underlying disease processes including diabetes which can cause both Bacterial Overgrowth and D-La, which are underdiagnosed because Doctors are not trained to recognize it at all!


Cheese and low Carb. Yogurt should be OK. It all depends on how bad an Overgrowth that you have. In terms of Fibre Bananas are contraindicated as high in Carbohydrates and Sugars. Low Carbohydrate Fibre fruits may be OK. I eat a small amount of apples etc. Blueberries are the preferred fruit but only in handfuls. I am still using Milk which has 5% Sugars and have only recently realized this and I am still making other mistakes, but even the reduction has had a profound effect and my symptoms are far better controlled and only return when I cannot implement the diet.

My belief is that it is the level of Metabolites produced such as D-Lactic acid due to the different levels of Carbohydrate/Sugars that will produce different levels of symptoms. Fatigue is one of the earliest symptoms when I fall ill and can happen at low levels of Carbohydrates.

I am still making a lot of mistakes with food and have had recurrence of symptoms for different reasons. I may have a high level of Overgrowth and this comes down to the underlying causation which can be numerous. I am still using milk which is 5%, but my dietitian had not removed it from my diet. I still have a long way to go and have found that there is Sucrose and Gelatin in some of the medications that I have been given.

I have found that the harder the diet and closer to 0% for Carbs and Sugars the longer I remain symptoms Free, but I have also been experimenting by adding certain foods to see if they can be included.

For many it may only involve a reduction in Carbohydrates and avoiding large Carbohydrate meals, but for those with more severe symptoms like myself, 0% is the only way. The Bacteria thrive and reproduce more quickly if they are given the opportunity.

When trying the diet it should be 0% for any trial, but your Doctor needs to be informed. The diet is similar to reducing Carbs and Sugars for Type 2 Diabetes (Diabetes can cause Bacterial Overgrowth and D-La). It may be that the high levels of Processed Meals, Carbohydrates, Sugars and Antibiotics are driving the abnormality in our Gut that Hunter Gatherers may never have experienced.

I think that it is significant that ME/CFS has increased exponentially since the introduction of antibiotics, although I have another theory, that there is the possibility that Viruses that survive in Gut Bacteria (as in the AIDs Virus), may contribute to the Overgrowth of some species of Bacteria when they use Gut Flora/Bacteria to propagate though adding DNA and RNA to Bacteria and the issues may be more complex than i am describing because there are also immune response issues (I have Hypogammaglobulinemia or low immune IgM which may be part of the whole . I was also forced to investigate my own immune problems).

Frequent use of antibiotics can lead to the decimation of natural Gut Flora and the replacement with Overgrowth of some of the Bacteria due to resistance and differences in the way that Gut Flora Species react to antibiotics.

I see this as as antibiotics selecting for Overgrowths through resistance and decimation of certain species of Natural Gut Flora. My Belief is that Probiotics should be taken after any use of antibiotics (but there are many probiotics that contain high levels of D-Lactic producing Bacteria). Urgent research is needed.

I have included part of a report below and will try to find another where there is a list of causes of Bacterial Overgrowth.

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

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.

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Methods
Ovid MEDLINE and PubMed databases were used to search the published literature. For Ovid MEDLINE (1966 to December 2006, English language only) three primary search terms (bacterial overgrowth, small intestine overgrowth, and small intestine bacterial overgrowth) were individually coupled with a larger number of secondary search terms (epidemiology, incidence, prevalence, populations at risk, symptoms, pathogenesis, pathophysiology, inflammation, malabsorption, complications, vitamin deficiency, motility disorders, scleroderma, gastroparesis, chronic intestinal pseudo-obstruction, celiac disease, irritable bowel syndrome, renal failure, cirrhosis, alcohol abuse, elderly, aging, diabetes, hypochlorhydria, surgery, malnutrition, diarrhea, evaluation, diagnosis, breath testing, duodenum, jejunum, aspirates, breath tests, lactulose, treatment, antibiotics, rifaximin, tetracycline, metronidazole, ciprofloxacin, amoxicillin/clavulanate, probiotics, duration, resistance). For PubMed (no time limit), a similar search process was followed. All identified articles were then manually searched for other relevant studies. Only published manuscripts are included in this review; abstracts are not included.

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Definition
SIBO is defined as a bacterial population in the small intestine exceeding 105–106organisms/mL.1,2 Normally, less than 103 organisms/mL are found in the upper small intestine, and the majority of these are Gram-positive organisms.3 In addition to the absolute number of organisms, the type of microbial flora present plays an important role in the manifestation of signs and symptoms of overgrowth.4 For example, a predominance of bacteria that metabolize bile salts to unconjugated or insoluble compounds may lead to fat malabsorption or bile acid diarrhea. In contrast, microorganisms that preferentially metabolize carbohydrates to short-chain fatty acids and gas may produce bloating without diarrhea because the metabolic products can be absorbed. Gram-negative coliforms, such as Klebsiella species, may produce toxins that damage the mucosa, interfering with absorptive function and causing secretion, thereby mimicking tropical sprue.

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Prevalence
An extensive literature search was unable to identify a study evaluating the incidence of SIBO in healthy volunteers. Only limited data are available regarding the prevalence of SIBO in healthy populations. In a study of 294 nonhospitalized older adults in which 34 younger adults (mean age 33.6 years) served as healthy controls, the prevalence of SIBO, as determined by glucose breath test, was 5.9% in the control group versus 15.6% in the older group.5 A study of healthy older adults from Japan (mean age 74.7 years) found no patient with SIBO using a glucose breath test;6 an Australian study detected SIBO from duodenal aspirates in 0% of healthy controls (mean age 59), although 13% were positive for SIBO using a lactulose breath test.7 Healthy elderly volunteers from the United Kingdom had a 14.5% prevalence rate for SIBO based on a positive glucose breath test.8 Finally, in a study of 111 patients with irritable bowel syndrome (IBS), 20% of healthy age- and sex-matched controls were found to have an abnormal lactulose breath test suggestive of SIBO.9 In summary, although data are limited, the prevalence rates of SIBO in young and middle-aged adults appear to be low, whereas prevalence rates appear to be consistently higher in the older patient (14.5–15.6%); these rates, however, are dependent upon the diagnostic test used (see below).

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Pathogenesis
SIBO develops when the normal homeostatic mechanisms that control enteric bacterial populations are disrupted. The two processes that most commonly predispose to bacterial overgrowth are diminished gastric acid secretion and small intestine dysmotility. Disturbances in gut immune function and anatomical abnormalities of the GI tract also increase the likelihood of developing SIBO. Once present, bacterial overgrowth may induce an inflammatory response in the intestinal mucosa, further exacerbating the typical symptoms of SIBO. Although not universally seen,10 overgrowth of small bowel intestinal flora may result in microscopic mucosal inflammation. Analysis of small bowel biopsies in elderly patients with bacterial overgrowth revealed blunting of the intestinal villi, thinning of the mucosa and crypts, and increased intraepithelial lymphocytes, all of which reversed with antibiotic treatment.11


Paul.
 

leokitten

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I think as an alternative to rifaximin or other antibiotics, one could try the herbal antimicrobials mentioned in this SIBO study

Herbal therapy is equivalent to rifaximin for the treatment of small intestinal bacterial overgrowth.

Chedid V1, Dhalla S2, Clarke JO3, Roland BC4, Dunbar KB5, Koh J6, Justino E7, Tomakin E8, Mullin GE9.
Author information
Abstract

OBJECTIVE:
Patients with small intestine bacterial overgrowth (SIBO) have chronic intestinal and extraintestinal symptomatology which adversely affects their quality of life. Present treatment of SIBO is limited to oral antibiotics with variable success. A growing number of patients are interested in using complementary and alternative therapies for their gastrointestinal health. The objective was to determine the remission rate of SIBO using either the antibiotic rifaximin or herbals in a tertiary care referral gastroenterology practice.

DESIGN:
One hundred and four patients who tested positive for newly diagnosed SIBO by lactulose breath testing (LBT) were offered either rifaximin 1200 mg daily vs herbal therapy for 4 weeks with repeat LBT post-treatment.

RESULTS:
Three hundred ninety-six patients underwent LBT for suspected SIBO, of which 251 (63.4%) were positive 165 underwent treatment and 104 had a follow-up LBT. Of the 37 patients who received herbal therapy, 17 (46%) had a negative follow-up LBT compared to 23/67 (34%) of rifaximin users (P=.24). The odds ratio of having a negative LBT after taking herbal therapy as compared to rifaximin was 1.85 (CI=0.77-4.41, P=.17) once adjusted for age, gender, SIBO risk factors and IBS status. Fourteen of the 44 (31.8%) rifaximin non-responders were offered herbal rescue therapy, with 8 of the 14 (57.1%) having a negative LBT after completing the rescue herbal therapy, while 10 non-responders were offered triple antibiotics with 6 responding (60%, P=.89). Adverse effects were reported among the rifaximin treated arm including 1 case of anaphylaxis, 2 cases of hives, 2 cases of diarrhea and 1 case of Clostridium difficile. Only one case of diarrhea was reported in the herbal therapy arm, which did not reach statistical significance (P=.22).

CONCLUSION:
SIBO is widely prevalent in a tertiary referral gastroenterology practice. Herbal therapies are at least as effective as rifaximin for resolution of SIBO by LBT. Herbals also appear to be as effective as triple antibiotic therapy for SIBO rescue therapy for rifaximin non-responders. Further, prospective studies are needed to validate these findings and explore additional alternative therapies in patients with refractory SIBO.
 

Avenger

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Thank you Leokitten,
this sounds very interesting. I would like to try the Herbals for D-La. Should be no difference as both SIBO and D-La are both Bacterial Overgrowth.

What Herbals can you recommend? I have never used Herbal Before.

I would very much like to stop using antibiotics. I do not respond to Rifaximin.

Paul.
 

leokitten

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@Avenger in that Johns Hopkins study I referenced above they used the following protocols:
Either two 200 mg rifaximin tablets three times daily (TID) or two capsules twice daily of the following commercial herbal preparations; Dysbiocide and FC Cidal (Biotics Research Laboratories, Rosenberg, Texas) or Candibactin-AR and Candibactin-BR (Metagenics, Inc, Aliso Viejo, California) for 4 consecutive weeks

You can find all four of these products on Amazon
 

Avenger

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323
Thanks Paul for your post.Very much appreciated. I'm posting a link to an interesting item; don't know if it's been posted here somewhere:
https://www.ncbi.nlm.nih.gov/pubmed/28592308

I also read that sometimes folks who have had bowel surgery can develop this condition too.

This discussion begs the question: why don't the CFS doctors look into this?

How would you rate your status now , Paul? And must you maintain this diet forever?

Hi, I had contacted Henry Butt, who is one of the co-authors 5 months before this was published, after I had been positively diagnosed with D-Lactic acidosis after many years of ME/CFS diagnosis. They have produced a far more in depth study which includes a number of researchers and a psychologist.

I must maintain the diet forever. I am trying to find an alternative. 3 days use of Carbohydrates and it all starts up again. The diet is not a cure it just stops the Bacteria producing D-Lactic acid. If you do not feed them they will not produce the toxin.

I am a lot better, but still having to use antibiotics when I make mistakes or cannot find suitable food eg. when i went on holiday. I am going to ask for Fecal transplant. I would prefer fecal transplants on a regular basis than antibiotics which can make the overgrowth worse by decimating more good bacteria. It seems as if you are just digging a bigger hole with antibiotics. I will also be trying Herbal antibacterials to see if they are as good as antibiotics.

I will keep in touch and let everyone know if I have any success.

Paul.
 

Avenger

Senior Member
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323
@Avenger in that Johns Hopkins study I referenced above they used the following protocols:


You can find all four of these products on Amazon

Hi Leokitten, excellent!

Thank you Leokitten, Do you know which of these products have highest ratings?

I will try and let you know. it sounds very exciting!

I am wondering whether to risk a trial off the diet or whether to wait for an exaccerbation which happens when I cannot maintain the diet eg. when I went on holiday and could only find food with Carbohydrates.

I have been concerned about using antibiotics for some time. My belief is that they may stop serious symptoms but you are just digging a bigger hole, because you are also decimating good bacteria which will only be replaced by increasing Overgrowth. I am guessing that there may be different levels of Overgrowth as well as different types and combinations of Overgrowth.

Paul.
 

cigana

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@leokitten Just to clarify, do you think you have D-Lactic acidosis or do you think you have SIBO?
(I'm just confused why you posted lots of papers on SIBO!) Thanks..
 

JES

Senior Member
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Symptoms of congenital pyruvate deficiency are similar to those seen in D-lactate toxicity. D-lactate (and acidosis itself) impairs the action of pyruvate dehydrogenase (PDH), interfering with pyruvate metabolism and inhibiting utilization of L-lactate as a fuel in the brain. As cerebellar PDH is already reduced relative to the serum, a relatively low concentration of D-lactate may lead to clinical symptoms, even as serum levels of PDH remain adequate.

Quote from this article. I was rather skeptical of D-lactic acidosis or bacterial overgrowth being a main driving factor of ME/CFS, but the article above links it to pyruvate dehydrogenase impairment, which as we know is a recently confirmed finding in ME/CFS as @leokitten already mentioned.

Personally I'm a bit skeptical that herbals would work as efficiently as certain antibiotics or restricting carbohydrates. The one herbal I once tried and which seemed to do something was enteric-coated peppermint oil, which is sold in many places.
 

JES

Senior Member
Messages
1,318
@leokitten Just to clarify, do you think you have D-Lactic acidosis or do you think you have SIBO?
(I'm just confused why you posted lots of papers on SIBO!) Thanks..

Quoting from the same article as in previous post:
SBBO is responsible for most cases of D-lactate toxicity; prevention of this overgrowth is important.

SBBO = small bowel bacterial overgrowth, so basically D-lactic acidosis and SIBO are overlapping conditions in many senses.
 

Avenger

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Messages
323
@leokitten Just to clarify, do you think you have D-Lactic acidosis or do you think you have SIBO?
(I'm just confused why you posted lots of papers on SIBO!) Thanks..

Hi Leokitten,
I have a full diagnosis from a Consultant Gastroenterologist for D-Lactic acidosis. D-Lactic acidosis is a more serious form of Bacterial Overgrowth.

I was first diagnosed with SIBO in 2015 (there are a lot of similarities between SIBO and D-La, except severity) and then later D-Lactic acidosis in 2017, due to the severity of neurological symptoms.

SIBO and D-La are both forms of Bacterial Overgrowth and may respond to similar Antibiotics such as Metronidazole or Rifaximin. I see SIBO and D-La as a similar problems that involve an Overgrowth of different Bacteria.

Gastroenterologist Luke white has stated that anyone suffering SIBO is at risk of developing D-Lactic acidosis ('D-Lactic acidosis more prevalent than we think').

SIBO is Bacterial Overgrowth that produces adverse Metabolites (and gasses such as Hydrogen and Methane depending on Bacteria and you can have both Hydrogen and Methane producing Bacteria in combination) as Overgrowth in the Small Intestine (but not D-Lactic acid).

SIBO alone can cause the symptoms of 'Chronic Fatigue' according to one of my Gastroenterologists.

I now believe that at least a Subset of CFS may be caused by the milder form of Bacterial Overgrowth SIBO, and ME by D-Lactic acidosis causing adverse neurological symptoms (both have overlapping symptoms). After experiencing the symptoms of D-La, I believe that D-Lactic acidosis may be the cause of a number of unexplained Deaths because Health 'Professionals' have little understanding. My local Hospital had no understanding of SIBO or D-La and I remained frequently ill expecting to die during the worst exacerbations for 18 years.

I was frequently left suffocating in A&E who checked my PCO2 but did not perform Blood Gasses. D-La causes the symptoms of suffocation with normal Oxygen levels. I was frequently ill and at worst had Slurred Speech and Confusion, Breathing Difficulty with normal PCO2, Muscle Weakness, Memory Problems, Abdominal Pain, Seizure and other symptoms and told that I was Hyperventilating due to Anxiety or that my symptoms were Somatic. Doctors became complacent that my symptoms were Somatic and many Doctors believe ME/CFS is a form of Somatization.

I believe that D-Lactic acidosis may be the cause of deaths in a number of ME patients.

D-La affects every organ during increased levels of Metabolites Produced (D-Lactic acid is one of the Metabolites. Sheedy et al. state that there are possibly a number of Metabolites involved). D-La can cause heart attacks due to arrhythms (and inability for cells to use available Oxygen), especially in patients weakened by years of illness. I had frequent tachyarrhythmias with chest pain and even kidney pain during exacerbations.

Hyperventilation in D-Lactic Acidosis (also found in ME), is a natural reaction to acidosis, not anxiety. I believe that D-La is the cause of breathing difficulty in ME.

D-La causes similar symptoms to SIBO when acidosis is mild, but also more severe systemic neurological symptoms and possibly life threatening episodes depending on severity and level of acidosis.

D-La, is a particular strain or strains of Bacterial Overgrowth that is more dangerous because it produces a poison D-Lactic acid, when found as an Overgrowth in the Small Intestine due to Carbohydrates and Simple Sugars that are not properly digested by normal Gut Flora. The same D-Lactic producing Bacteria are found in smaller quantities in the Intestine as part of the natural balance of Gut Flora.

It is most likely that IBS is also caused by Bacterial Overgrowth and there are many similarities between SIBO and IBS. (I am guessing that AIDS is also caused by Bacterial Overgrowth of Bacteria infected with the AIDs Virus which has most recently been found to start in the Gut. Viral Infections may also possibly contribute to Overgrowth by altering the normal Flora Balance).

I now believe that Antibiotics may also contribute (and causation of Bacterial Overgrowth may be from either disease or a combination of factors). Antibiotics can Select Bacteria for Overgrowth due to allowing certain Bacteria to Survive through Advantage or gaining Resistance while other colonies are decimated.

I believe that SIBO and D-La are greatly underdiagnosed due to lack of training in Doctors. Ask a few Doctors about D-Lactic acidosis. I have recently, and one Doctor told me he had never heard of D-Lactic acidosis.

There may be more than one form of Bacterial Overgrowth and there may also be combinations of different forms of Bacterial Overgrowth involved in SIBO, the gasses produced indicate different types of Bacteria and Combinations of both.

There are many diseases including Diabetes that will cause Bacterial Overgrowth and problems like Insulin Resistance which has developed because we are not yet fully adapted to high levels of Starches and Sugars that are a by-product of modern Western Civilization.

The problems are complex and need research. I am rather tired and hope this makes sense.

Paul.
 

Avenger

Senior Member
Messages
323
Quote from this article. I was rather skeptical of D-lactic acidosis or bacterial overgrowth being a main driving factor of ME/CFS, but the article above links it to pyruvate dehydrogenase impairment, which as we know is a recently confirmed finding in ME/CFS as @leokitten already mentioned.

Personally I'm a bit skeptical that herbals would work as efficiently as certain antibiotics or restricting carbohydrates. The one herbal I once tried and which seemed to do something was enteric-coated peppermint oil, which is sold in many places.

Hi Jes,
restriction of Carbohydrates and Simple Sugars can reduce or stop the production of D-Lactic acid completely. It is possible to stop D-Lactic acidosis only using this method. It is the main treatment for D-La, but many patients fail to maintain the diet. See Dr. Luke White '' D-Lactic acidosis, more prevalent than we think''. He gives a very good explanation, Free online.

If you do not feed D-Lactic producing Bacteria Carbs and Sugars they will not produce D-Lactic acid. It is the presence and Overgowth of D-Lactic producing Bacteria in the Small Intestine (due to disease, motility or abnormality such as failed valve between Small and Large Intestine or Short Bowel Syndrome) that causes the production of D-Lactic acid which is a Neurotoxin..

Paul.