Open Medicine Foundation...conducting detailed research on ME/CFID's out of Stanford with research lead Dr. Ron Davis(whose son is extremely ill with the disease) steering a team of incredibly impressive Scientists trying to find cause and treatment of disease..
ME/CFS for 18 years, recently diagnosed with D-Lactic acidosis as cause of symptoms and illness.
- Thread starter Avenger
- Start date
Hi, I was symptom free within a week as far as far as I can remember. 64 hours with total exclusion should show results. Continuing for a longer period is just to make sure that you have not had a natural remission from something else. But if you get results you need to see a Gastroenterologist and Dietitian (remember to tell your Doctor first). I made a lot of mistakes and there are Carbs/Sugars in some of the things that the Dietitian listed for me.
For the trial it is best to use only things like proteins and veg, eggs, fish, very little fruit (with low sugars, bluberries etc.) Very low Carb yogurt. You can experiment after.
Breakfast; Bacon, Eggs, Mushroom, Tomatoes or Kippers in Butter.
You can eat fats and cream on this diet. Fats used for energy although I have found it unnecessary to add deliberate fats, but they are included in the Diet.
Paul
knackers323
Senior Member
- Messages
- 1,625
@Avenger a definitely feel better when I don't eat or follow a diet of mostly veggies. Some meat seems to be ok and after a day or so I seem to need carbs. I'm trying small amounts of fruit which seems ok.
I don't know that it's from Da-l though.
Can it be an issue in absence of any guy symptoms?
I don't know that it's from Da-l though.
Can it be an issue in absence of any guy symptoms?
Hi, thank you, I will go to the site later (do you have a link).
It took 18 years for me to be diagnosed. There are only a few tests for D-La which can cause incredible serious illness in some. There may be a number of causes of ME/CFS but I believe that D-La is a contender. Everything else can be normal so it appears that a D-La patient is well according to all investigations.
I also believe that there are different forms of Bacterial Overgrowth from mild to extreme. IBS is a milder form and D-La is just another form of Bacterial Overgrowth that I believe has been grossly underestimated.
Paul
All tests can be normal with Bacterial Overgrowth and D-La (these are two separate form of Bacterial Overgrowth. I believe that there could be a number of different variants depending on Bacteria involved).
You only need to try the diet if you have Gut symptoms which come with Bacterial overgrowth (as well as fatigue and muscle pain and other symptoms).
If you have less symptom either on diet or fasting, then you may have Bacterial Overgrowth. D-La produces neurological symptoms on top and can cause from mild to extremes of illness.
Please tell your Doctor before starting the Diet although it is an optimal healthy diet that is recommended by Sarah Myhill (please go to her site) for ME/CFS and similar to a Diet for Diabetes (low Carb/Sugar).
Paul.
https://www.omf.ngo/
Also Ron's wife Janet Dafoe posts on this site and tends to be very open communicating with posters/patients....so you may want to try and get in touch with her and have your findings and the course of your illness shared with her and Ron. It's such a great uplifting story and if it can be replicated for other patients it would be a wonderful gift from you to the world.
Also can you post some detail of what you eat on a daily basis or somewhere to find a diet like yours to follow. I'm sure I have the problem you described and unfortunately have lately been eating a lot of carbs since I just found a wonderful gluten free bakery so have gone overboard on "bread-like" items....but I have become extremely bloated and uncomfortable and my fatigue has worsened.
I shared your story and the theory behind your treatment with my Dr and he finds it all very plausible given our tendency to have leaky gut and SIBO issues proven through testing.
thanks for any and all advice re: diet.
Hi, not eating
Dear Navid,
I sent the email below to the head of the NHS Chief Executive 12/07/2017 and NHS Gloucestershire and also Sally Davies the Chief Medical Officer soon after having realized what was causing my ME/CFS symptoms for 18 years. I have been trying to contact different organisations including the ME Association and many others soon after realizing that my ME/CFS symptoms were in fact D-Lactic acidosis. I also sent to many others as soon as I realized the implications. I now believe that there may be a number of forms of Bacterial Overgrowth causing variations of symptoms from IBS to the worst which I believe to be D-La producing Bacteria. I see this as a hidden plague that acts and has characteristics of infection and poisoning from the toxins produced. Bacterial Overgrowth does not explain the severity or seriousness of the problems it produces. I will try to contact the people who you have suggested. But can I ask all who read this to pass this on to whoever this may benefit and other organisations for further investigation. This may help at the very least a Subset, but I am guessing possibly more. I am hoping the beginning of the end for this enigma, but will need further research.
Email to the Head of Chief Executive and other Officers below:
Fw: For Simon Stephens and Chief Executive Officers; Possible, potential causation of M.E and Chronic Fatigue Syndrome/Fibromyalgia..
PS
Paul Smith
Reply|
Wed 12/07/2017, 19:57
karen.corfield@glos.nhs.uk;
+5 more
This message was sent with high importance.
Show all 8 attachments (4 MB) Download all
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Dear Sirs,
I am asking that this email is distributed to all managers within the NHS. It is information that concerns ME/CFS sufferers. It may help at the very least a subset of ME/CFS/Fibromyalgia sufferers, but I believe many more.
I was diagnosed with ME/CFS and Fibromyalgia, but have recently been diagnosed with D-Lactic accumulates related to Small Bowel Dysfunction and SBBO.
I believe that it is D-Lactic accumulates which is affecting those most ill with ME/CFS, which causes abnormal systemic neurology due to D-Lactic accumulates. It is what I have been suffering from for the last 17 years and can be controlled through both diet and antibiotics.
Please read the email below.
This information may greatly unburden the NHS and other resources once properly investigated.
Yours Sincerely, Paul D. Smith.
From: Paul Smith <pablo.smith445@hotmail.co.uk>
Sent: 08 July 2017 17:12
To: england.ce@nhs.net; hatherley.enquiries@nhs.net; Malcolm; WRIGHT, Hannah; Frances Hathorn; J.J.F.Belch@Dundee.ac.uk; charles.c.shepherd@btinternet.com; Ian Smith; las.lewis@hotmail.co.uk; lorrainprothero@googlemail.com; lorraineprothero@googlemail.com; Lynda Crow; Trish Davidson
Subject: For Simon Stephens and Chief Executive Officers; Possible, potential causation of M.E and Chronic Fatigue Syndrome/Fibromyalgia..
From Mr. Paul D. Smith,
41, Fernleigh Crescent,
Up Hatherley,
Cheltenham, Glos.
GL513QJ.
Most Urgent. 05/07/2017.
Copy to; Dr. Rebecca Milford, Professor Malcolm Hooper, Dr. Jillian Belch, Dr. Charles Shepherd, Alex Chalk M.P.
For Simon Stephens; Chief Executive and all Executive Officers of NHS England, including Bath and Gloucestershire, on behalf of myself and many thousands of others suffering from ‘ME/CFS and Fibromyalgia’ concerning the possible, potential causation of ME/CFS; through Small Bowel Dysfunction, Small Bowel Bacterial Overgrowth (SBBO) causing Abnormal Fatigue; and related to D-isomer of Lactate accumulates which may be greatly underdiagnosed and the cause of Neurological Symptoms in patients with ME/CFS.
Dear Sirs,
I was diagnosed with ME/CFS/Fibromyalgia, having milder symptoms before 1999 but became very unwell from 1999, and have remained frequently unwell for over 17 years without diagnosis until most recently in February 2017. I am now receiving treatment to suppress D-Lactic Acidosis symptoms, and I believe that although my Symptoms are D-Lactic Acidosis related to SBBO that my symptoms may correlate to ME/CFS in many others. D-isomer of Lactate accumulates have been the cause of fluctuating illness and abnormal Neurology in myself, due to an inability to metabolise Carbohydrates and Simple Sugars, but my illness had been diagnosed as ME/CFS. I believe that at the very least a subset, but suspect far more sufferers of ME/CFS may have been misdiagnosed like myself and I ask for the NHS to investigation to look for SBBO and D-Lactic Acidosis in those with ME/CFS, which I believe to have been overlooked as the possible/potential causation of Encephalopathy and Neurological symptoms that patients have been describing for decades.
I am offering evidence of Organic causation in ME/CFS and also of the severity of symptoms encountered by ME/CFS patients whose symptoms have been treated as Psychological or Somatic (please read my story). The severity of symptoms is virtually undetectable except through specific Blood Gas tests. D-isomer of Lactate cannot be properly metabolised and enters both blood stream and then spinal fluid and acts as a toxin or poison to produce systemic neurological problems. This may fluctuate or be profound at times and cause episodes of extremely painful and distressing systemic symptoms affecting areas such as muscle weakness and pain, tachyarrhythmia’s, respiratory system and cognition, causing confusion and breathing difficulty.
My reason for writing is that I believe, like myself, many CFS/ME/Fibromyalgia sufferers have not been taken seriously, are often misdiagnosed and often mistreated (please ask for their opinions), or given psychological diagnoses and the most inappropriate treatments in the past such as Pace Trials, and offered Cognitive Behavioural Therapy instead of treatment (Professor Malcolm Hooper, Sunderland University). I believe that at least a subset of ME/CFS sufferers and possibly many more may have developed Bacterial Overgrowth and that some may have developed far more serious D-Lactic Symptoms which affect Systemic Neurological Abnormality as described by M.E. patients), which may be far more common than is understood (Please read attachment by Dr. Luke White; D-Lactic Acidosis, more prevalent than we think?; Nutrition Issues In Gastroenterology/ Carol Rees Parrish; Series Editor).
Dr. White states that anyone with SBBO is at risk of developing D-isomer of Lactate accumulates and I have developed such accumulates (without short bowel syndrome) which have caused me frequent profound and painful symptoms, that now respond to both Abstention Diet for Carbohydrates/ Simple Sugars combined with Cyclical Antibiotic Therapy (although I have developed Antibiotic resistance because of the prolonged time that it has taken to receive treatment).
I believe SBBO/D-Lactate to be the source of ME/CFS in many sufferers. Dr.White had written because he believes that D-Lactic accumulations affect a broader group of patients than initially thought (attachment title). From statistical data during one survey 100% of Fibromyalgia patients were found to have SBBO and there are many similar survey results for CFS.
I must emphasize that I am not talking about Chronic Fatigue due to Depression or similar disorders. But Chronic Fatigue Syndrome as understood by the CFS/ME Association/Dr. Charles Shepherd (although those with CFS/ME often suffer depression secondary to CFS/ME).
I contend that these problems may be due to Modern Medicine; in particular Antibiotics (overuse in medicine and in agriculture that can cause overwhelming bias towards Lactic Acid producing Bacteria and Overgrowth and GUT flora disturbances), NSAIDs which are known to damage the mucosal lining of the GUT and cause much other damage leading to SBBO, Stomach Acid Suppressants allowing bacteria to thrive where it normally would not and also Pesticides and Chemicals (Professor Malcolm Hooper) may take part in a chain of events that can lead to Bacterial Overgrowth and accumulations of D-Lactate and generate abnormal Neurological symptoms, much like ME/CFS symptoms affecting many thousands of people across the world.
SBBO alone can cause prolonged problems with abnormal Fatigue, loss of Nutrients, Vitamins, Mucosal Damage, and Blood Sugar disturbances such as Hypoglycaemia and may be a stage in severity of illness, where more severe illness and Neurological symptoms are related to D-isomer of Lactate accumulates which are not investigated in CFS/ME patients.
I have only recently been diagnosed and I am now receiving treatment for this illness that has caused me frequent severe systemic neurological symptoms and episodes that I had expected to die from, when a number of Doctors had treated the symptoms as due to Anxiety or as Psychological from 1999. I had remained very unwell for over 17 years. I was frequently told that I had Chronic Fatigue, M.E. and when illness had greatly worsened after two years of increasing Abdominal Pain, Breathing Difficulty and other symptoms by 2001, I was told that my problems were all psychological and I was then given a formal Somatisation Disorder, which had greatly obstructed any chance of diagnosis.
I had frequent periods of fluctuating illness from just feeling unwell with abnormal fatigue, to extreme episodes and multiple systemic symptoms affecting Abdominal Pain, Muscle Weakness and Muscle Pain, Breathing Difficulty much like Suffocation, Slurred Speech, Drunk like Confusion, Memory difficulty, Tachyarrhythmia’s and even my Sight and Hearing was affected by ringing as symptoms worsened (please see ME/CFS symptom descriptions in; ‘What is ME, What is CFS’ Professor Malcolm Hooper, E. P. Marshall and M. Williams/ ME Research UK).
I was lucky, in that I later realised that all symptoms of my illness ceased temporarily after using antibiotics and thought that the serious systemic symptoms were Infection, which led to receiving the first stage of diagnosis for SBBO from Dr. Ray Shidrawi in 2015, although SBBO did not explain my more severe symptoms. But Antibiotics began to become increasingly ineffective within months of my appointment and soon after this I was moving from antibiotic to antibiotic with only days between before having to start another antibiotic course, and this had continued for over a year and a half until recent diagnosis. I realised just as my symptoms were becoming impossible to manage through antibiotics in February this year when I could no longer control the symptoms, and was not expecting to survive that my symptoms were D-Lactic Acidosis and I was given treatment by Dr. Tom Creed from Bristol University, for which I am extremely grateful (to both Gastroenterologists).
I have become Resistant to a number of important Antibiotics due to the prolonged delay in treating my symptoms, and there may be further implications concerning my future treatment and any future Antibiotic use. My situation should never have evolved for so long, but I was just not taken seriously. The Somatisation disorder has been frequently referred to since being misdiagnosed by very poor Doctors who did not recognise or investigate my symptoms when I first fell ill from 1999 that no further investigations were carried out on my behalf. I was later forced to diagnose my own problems and go for help ‘out of county’. I have never encountered so much arrogance or ignorance.
During one of the worst episodes of illness and breathing difficulty I was left by A&E in a room on my own without observation, staff or investigations from overnight until the following day before seeing a Doctor (I was not even offered anything to drink). Later in 2003, I was refused an OOH’s visit after waking during the night close to losing consciousness during an episode, because the Doctor stated that I was ‘Drunk’ and believed that my slurred speech and confusion were symptoms of Alcohol.
I had a very good Doctor in 2003, who stated that I was not suffering from Somatisation, (as did the Hospital Consultant at that time and other Doctors), the Doctor wrote a letter to A&E entitled ‘Drunk not Drunk’ in response to the OOH’s refusal to visit me during one of many (hundreds of episodes from that time until this year). Both the Doctor and Hospital Consultant had asked for Blood Gasses to be taken by A&E, but they were never taken or investigated even after frequent illness, pain, slurred speech, drunk like confusion, breathing difficulty, hyperventilation, abdominal pain and seizure.
The same Doctor wrote again in 2013 about my Drunk like behaviour, but no Blood Gas investigations were ever done. During a more recent episode in 2015, I was left without an OOH’s call out again during an episode, even after starting to develop confusion, and I no longer trust either OOH’S or A&E. Senior Doctors at one practise would not visit while I was ill and would refer me back to make an appointment with my own Doctor, which could take weeks, when I called with illness, slurred speech, or confusion as if I was being a nuisance.
No investigations were ever carried out by A&E even after Blood Gasses had been requested by a Consultant.
I understand why so many with CFS/ME have thought of, or committed suicide. I was close to suicide in 2001, (the year that I was given a Somatisation Disorder instead of treatment), because I could no longer tolerate either the pain or the severity of symptoms which included breathing difficulty like suffocation. Even after telling the Psychologist who gave the Somatisation Disorder that I may have to suicide if I could not get any help, I was dismissed directly after the Somatisation and left to fend for myself with no further help from the psychiatrist (which was worse than receiving a life sentence).
Even after three Doctors had made statements that I was not Somatising or suffering from Anxiety in 2003, I was never taken seriously during episodes including breathing difficulty in A&E and no investigations were ever performed for Blood Gasses requested from that date.
I have developed great issues with the trust of Doctors ever since the Somatisation was originally misdiagnosed by a Consultant in the Pain Clinic in 2001, who treated me in the most belligerently aggressive manner and recommended that I should be seen by as few Doctors as possible and should have no further investigations. The same Pain Clinic Doctor would not listen to anything that I had to say and even boasted in a letter that he had shut me up by challenging me. I was left in hell, very unwell and in great pain and no one would listen to me or take me seriously. Somatisation trivialises symptoms to merely a perception of pain by the Brain, so that it can be dealt with through Cognitive Behavioural Therapy by Psychiatrists. Professor Hooper has written about such misdiagnosis and claims that there is no sound basis for Somatisation as used by Psychiatrists concerning ME/CFS.
Even after requests and letters from a number of Consultants that I was to be seen as quickly as possible in A&E, I would often be left for hours and sent home from A&E when symptoms had abated, only to worsen later on returning home when I was forced to treat myself with antibiotics (from the point that I realised that antibiotics would only stop the symptoms temporarily). This was an extremely dangerous time for me because my symptoms would frequently cause confusion and I only had myself to administer the antibiotics.
I have found evidence that the Head of A&E had written advising one of the Doctors in 2006, concerning an episode of abdominal pain with slurred speech, where I had become unwell, not to perform investigations because he stated that ‘I had been fully investigated’. I had been blamed when early investigations showed no significant abnormality because Consultants had made the wrong investigations and their lack of findings were used as evidence of a lack of symptoms. It has taken until this year for the correct investigations to be started after hundreds of episodes and years of fluctuating illness.
I may never get over my mistreatment by so many NHS Doctors and Consultants who in my case have caused more harm than good and it is likely that many others will have psychological problems after such mistreatment. My treatment was worse than rape and akin to being jailed without a crime. I was bullied and often sent home while in pain and very unwell. Much of my treatment is beyond description and I have lost a great deal.
I also believe that my circumstances may not present a worst case scenario for some facing CFS/ME. Acidosis symptoms can cause, Seizure, Coma and Death. It is highly likely that my own case is anything but idiosyncratic. Other problems that I had before falling unwell, Spinal Injuries and Shoulder Tears became deemed Chronic Fatigue and were left untreated for Decades, and when they were finally diagnosed I could not have surgery because I was frequently too unwell due to the undiagnosed Acidosis symptoms that could have been fatal if surgery had gone ahead. I have been able to have Surgery for the first time just over a week ago that would have gone ahead during the period that I had undiagnosed Acidosis.
The most simple treatment (Dietary with Cyclical Antibiotics) could have been instigated over 17 years ago and I would have been symptom free yet I was repeatedly accused of my problems being psychological. I have given evidence that there is Organic and not a Psychological basis for some CFS/ME sufferers. I have full evidence in support of my allegations in a recent hospital complaint (2016/17), although this document better explains what has happened because I have only recently been fully diagnosed. The diagnosis now fully explains my symptoms over the past 17 years.
Prolonged Acidosis damages cells in particular the Brain where cells cannot be replaced and there is a far greater probability of dementia in later life, so early diagnosis is essential.
If ME/CFS is caused by modern medicines, then it is a profound man made, modern day plague and I believe a symptom of ignorance and long term failure to evaluate modern medicines or complications of medicines, pesticides and chemicals (Professor Malcolm Hooper, Sunderland University).
ME/CFS may have been the first sign of the overuse of Antibiotics, Pesticides and Chemicals, both in Medicine and in Agriculture that has been ignored for decades.This is not a warning shot, nature does not give warnings!
I believe that many more people will become unwell and that ME/CFS is already increasing in children.
If even a subset of ME/CFS patients have either SBBO or D-Lactic symptoms, they need to be investigated and more needs to be done to detect such problems, which I was left to do for myself (patients with D-Lactic symptoms would not be fit for surgery and will remain at risk for complications). I believe that far more patients than just a subset will have these symptoms which cover the ME/CFS range. Treatment is relatively cheap and Dietary intervention greatly simplifies the use of Antibiotics and will greatly unburden NHS and other resources once properly investigated.
I ask for an end to the arrogance and ignorance related to CFS/ME and criminal acts of Psychologists who have created new semantics to sweep the pain of so many under the carpet in a shamanic catastrophe that will greatly undermine their credibility.
Our stories need to be heard.
I ask after many years of mistreatment, and on behalf of many thousands like myself that my contentions and allegations are fully investigated through the NHS by unbiased Consultants such as Professor Gillian Belch of Dundee University and Professor Malcolm Hooper from Sunderland University, who have invested a great deal of their lives into ME/CFS research. It would be good to ask for the opinions of those including myself who have already been failed by the system and obtain a true picture of our needs.
Yours Sincerely, Paul D. Smith.
Dear Navid,
I sent the email below to the head of the NHS Chief Executive 12/07/2017 and NHS Gloucestershire and also Sally Davies the Chief Medical Officer soon after having realized what was causing my ME/CFS symptoms for 18 years. I have been trying to contact different organisations including the ME Association and many others soon after realizing that my ME/CFS symptoms were in fact D-Lactic acidosis. I also sent to many others as soon as I realized the implications. I now believe that there may be a number of forms of Bacterial Overgrowth causing variations of symptoms from IBS to the worst which I believe to be D-La producing Bacteria. I see this as a hidden plague that acts and has characteristics of infection and poisoning from the toxins produced. Bacterial Overgrowth does not explain the severity or seriousness of the problems it produces. I will try to contact the people who you have suggested. But can I ask all who read this to pass this on to whoever this may benefit and other organisations for further investigation. This may help at the very least a Subset, but I am guessing possibly more. I am hoping the beginning of the end for this enigma, but will need further research.
Email to the Head of Chief Executive and other Officers below:
Fw: For Simon Stephens and Chief Executive Officers; Possible, potential causation of M.E and Chronic Fatigue Syndrome/Fibromyalgia..
PS
Paul Smith
Reply|
Wed 12/07/2017, 19:57
karen.corfield@glos.nhs.uk;
+5 more
This message was sent with high importance.
Show all 8 attachments (4 MB) Download all
Save all to OneDrive - Personal
Dear Sirs,
I am asking that this email is distributed to all managers within the NHS. It is information that concerns ME/CFS sufferers. It may help at the very least a subset of ME/CFS/Fibromyalgia sufferers, but I believe many more.
I was diagnosed with ME/CFS and Fibromyalgia, but have recently been diagnosed with D-Lactic accumulates related to Small Bowel Dysfunction and SBBO.
I believe that it is D-Lactic accumulates which is affecting those most ill with ME/CFS, which causes abnormal systemic neurology due to D-Lactic accumulates. It is what I have been suffering from for the last 17 years and can be controlled through both diet and antibiotics.
Please read the email below.
This information may greatly unburden the NHS and other resources once properly investigated.
Yours Sincerely, Paul D. Smith.
From: Paul Smith <pablo.smith445@hotmail.co.uk>
Sent: 08 July 2017 17:12
To: england.ce@nhs.net; hatherley.enquiries@nhs.net; Malcolm; WRIGHT, Hannah; Frances Hathorn; J.J.F.Belch@Dundee.ac.uk; charles.c.shepherd@btinternet.com; Ian Smith; las.lewis@hotmail.co.uk; lorrainprothero@googlemail.com; lorraineprothero@googlemail.com; Lynda Crow; Trish Davidson
Subject: For Simon Stephens and Chief Executive Officers; Possible, potential causation of M.E and Chronic Fatigue Syndrome/Fibromyalgia..
From Mr. Paul D. Smith,
41, Fernleigh Crescent,
Up Hatherley,
Cheltenham, Glos.
GL513QJ.
Most Urgent. 05/07/2017.
Copy to; Dr. Rebecca Milford, Professor Malcolm Hooper, Dr. Jillian Belch, Dr. Charles Shepherd, Alex Chalk M.P.
For Simon Stephens; Chief Executive and all Executive Officers of NHS England, including Bath and Gloucestershire, on behalf of myself and many thousands of others suffering from ‘ME/CFS and Fibromyalgia’ concerning the possible, potential causation of ME/CFS; through Small Bowel Dysfunction, Small Bowel Bacterial Overgrowth (SBBO) causing Abnormal Fatigue; and related to D-isomer of Lactate accumulates which may be greatly underdiagnosed and the cause of Neurological Symptoms in patients with ME/CFS.
Dear Sirs,
I was diagnosed with ME/CFS/Fibromyalgia, having milder symptoms before 1999 but became very unwell from 1999, and have remained frequently unwell for over 17 years without diagnosis until most recently in February 2017. I am now receiving treatment to suppress D-Lactic Acidosis symptoms, and I believe that although my Symptoms are D-Lactic Acidosis related to SBBO that my symptoms may correlate to ME/CFS in many others. D-isomer of Lactate accumulates have been the cause of fluctuating illness and abnormal Neurology in myself, due to an inability to metabolise Carbohydrates and Simple Sugars, but my illness had been diagnosed as ME/CFS. I believe that at the very least a subset, but suspect far more sufferers of ME/CFS may have been misdiagnosed like myself and I ask for the NHS to investigation to look for SBBO and D-Lactic Acidosis in those with ME/CFS, which I believe to have been overlooked as the possible/potential causation of Encephalopathy and Neurological symptoms that patients have been describing for decades.
I am offering evidence of Organic causation in ME/CFS and also of the severity of symptoms encountered by ME/CFS patients whose symptoms have been treated as Psychological or Somatic (please read my story). The severity of symptoms is virtually undetectable except through specific Blood Gas tests. D-isomer of Lactate cannot be properly metabolised and enters both blood stream and then spinal fluid and acts as a toxin or poison to produce systemic neurological problems. This may fluctuate or be profound at times and cause episodes of extremely painful and distressing systemic symptoms affecting areas such as muscle weakness and pain, tachyarrhythmia’s, respiratory system and cognition, causing confusion and breathing difficulty.
My reason for writing is that I believe, like myself, many CFS/ME/Fibromyalgia sufferers have not been taken seriously, are often misdiagnosed and often mistreated (please ask for their opinions), or given psychological diagnoses and the most inappropriate treatments in the past such as Pace Trials, and offered Cognitive Behavioural Therapy instead of treatment (Professor Malcolm Hooper, Sunderland University). I believe that at least a subset of ME/CFS sufferers and possibly many more may have developed Bacterial Overgrowth and that some may have developed far more serious D-Lactic Symptoms which affect Systemic Neurological Abnormality as described by M.E. patients), which may be far more common than is understood (Please read attachment by Dr. Luke White; D-Lactic Acidosis, more prevalent than we think?; Nutrition Issues In Gastroenterology/ Carol Rees Parrish; Series Editor).
Dr. White states that anyone with SBBO is at risk of developing D-isomer of Lactate accumulates and I have developed such accumulates (without short bowel syndrome) which have caused me frequent profound and painful symptoms, that now respond to both Abstention Diet for Carbohydrates/ Simple Sugars combined with Cyclical Antibiotic Therapy (although I have developed Antibiotic resistance because of the prolonged time that it has taken to receive treatment).
I believe SBBO/D-Lactate to be the source of ME/CFS in many sufferers. Dr.White had written because he believes that D-Lactic accumulations affect a broader group of patients than initially thought (attachment title). From statistical data during one survey 100% of Fibromyalgia patients were found to have SBBO and there are many similar survey results for CFS.
I must emphasize that I am not talking about Chronic Fatigue due to Depression or similar disorders. But Chronic Fatigue Syndrome as understood by the CFS/ME Association/Dr. Charles Shepherd (although those with CFS/ME often suffer depression secondary to CFS/ME).
I contend that these problems may be due to Modern Medicine; in particular Antibiotics (overuse in medicine and in agriculture that can cause overwhelming bias towards Lactic Acid producing Bacteria and Overgrowth and GUT flora disturbances), NSAIDs which are known to damage the mucosal lining of the GUT and cause much other damage leading to SBBO, Stomach Acid Suppressants allowing bacteria to thrive where it normally would not and also Pesticides and Chemicals (Professor Malcolm Hooper) may take part in a chain of events that can lead to Bacterial Overgrowth and accumulations of D-Lactate and generate abnormal Neurological symptoms, much like ME/CFS symptoms affecting many thousands of people across the world.
SBBO alone can cause prolonged problems with abnormal Fatigue, loss of Nutrients, Vitamins, Mucosal Damage, and Blood Sugar disturbances such as Hypoglycaemia and may be a stage in severity of illness, where more severe illness and Neurological symptoms are related to D-isomer of Lactate accumulates which are not investigated in CFS/ME patients.
I have only recently been diagnosed and I am now receiving treatment for this illness that has caused me frequent severe systemic neurological symptoms and episodes that I had expected to die from, when a number of Doctors had treated the symptoms as due to Anxiety or as Psychological from 1999. I had remained very unwell for over 17 years. I was frequently told that I had Chronic Fatigue, M.E. and when illness had greatly worsened after two years of increasing Abdominal Pain, Breathing Difficulty and other symptoms by 2001, I was told that my problems were all psychological and I was then given a formal Somatisation Disorder, which had greatly obstructed any chance of diagnosis.
I had frequent periods of fluctuating illness from just feeling unwell with abnormal fatigue, to extreme episodes and multiple systemic symptoms affecting Abdominal Pain, Muscle Weakness and Muscle Pain, Breathing Difficulty much like Suffocation, Slurred Speech, Drunk like Confusion, Memory difficulty, Tachyarrhythmia’s and even my Sight and Hearing was affected by ringing as symptoms worsened (please see ME/CFS symptom descriptions in; ‘What is ME, What is CFS’ Professor Malcolm Hooper, E. P. Marshall and M. Williams/ ME Research UK).
I was lucky, in that I later realised that all symptoms of my illness ceased temporarily after using antibiotics and thought that the serious systemic symptoms were Infection, which led to receiving the first stage of diagnosis for SBBO from Dr. Ray Shidrawi in 2015, although SBBO did not explain my more severe symptoms. But Antibiotics began to become increasingly ineffective within months of my appointment and soon after this I was moving from antibiotic to antibiotic with only days between before having to start another antibiotic course, and this had continued for over a year and a half until recent diagnosis. I realised just as my symptoms were becoming impossible to manage through antibiotics in February this year when I could no longer control the symptoms, and was not expecting to survive that my symptoms were D-Lactic Acidosis and I was given treatment by Dr. Tom Creed from Bristol University, for which I am extremely grateful (to both Gastroenterologists).
I have become Resistant to a number of important Antibiotics due to the prolonged delay in treating my symptoms, and there may be further implications concerning my future treatment and any future Antibiotic use. My situation should never have evolved for so long, but I was just not taken seriously. The Somatisation disorder has been frequently referred to since being misdiagnosed by very poor Doctors who did not recognise or investigate my symptoms when I first fell ill from 1999 that no further investigations were carried out on my behalf. I was later forced to diagnose my own problems and go for help ‘out of county’. I have never encountered so much arrogance or ignorance.
During one of the worst episodes of illness and breathing difficulty I was left by A&E in a room on my own without observation, staff or investigations from overnight until the following day before seeing a Doctor (I was not even offered anything to drink). Later in 2003, I was refused an OOH’s visit after waking during the night close to losing consciousness during an episode, because the Doctor stated that I was ‘Drunk’ and believed that my slurred speech and confusion were symptoms of Alcohol.
I had a very good Doctor in 2003, who stated that I was not suffering from Somatisation, (as did the Hospital Consultant at that time and other Doctors), the Doctor wrote a letter to A&E entitled ‘Drunk not Drunk’ in response to the OOH’s refusal to visit me during one of many (hundreds of episodes from that time until this year). Both the Doctor and Hospital Consultant had asked for Blood Gasses to be taken by A&E, but they were never taken or investigated even after frequent illness, pain, slurred speech, drunk like confusion, breathing difficulty, hyperventilation, abdominal pain and seizure.
The same Doctor wrote again in 2013 about my Drunk like behaviour, but no Blood Gas investigations were ever done. During a more recent episode in 2015, I was left without an OOH’s call out again during an episode, even after starting to develop confusion, and I no longer trust either OOH’S or A&E. Senior Doctors at one practise would not visit while I was ill and would refer me back to make an appointment with my own Doctor, which could take weeks, when I called with illness, slurred speech, or confusion as if I was being a nuisance.
No investigations were ever carried out by A&E even after Blood Gasses had been requested by a Consultant.
I understand why so many with CFS/ME have thought of, or committed suicide. I was close to suicide in 2001, (the year that I was given a Somatisation Disorder instead of treatment), because I could no longer tolerate either the pain or the severity of symptoms which included breathing difficulty like suffocation. Even after telling the Psychologist who gave the Somatisation Disorder that I may have to suicide if I could not get any help, I was dismissed directly after the Somatisation and left to fend for myself with no further help from the psychiatrist (which was worse than receiving a life sentence).
Even after three Doctors had made statements that I was not Somatising or suffering from Anxiety in 2003, I was never taken seriously during episodes including breathing difficulty in A&E and no investigations were ever performed for Blood Gasses requested from that date.
I have developed great issues with the trust of Doctors ever since the Somatisation was originally misdiagnosed by a Consultant in the Pain Clinic in 2001, who treated me in the most belligerently aggressive manner and recommended that I should be seen by as few Doctors as possible and should have no further investigations. The same Pain Clinic Doctor would not listen to anything that I had to say and even boasted in a letter that he had shut me up by challenging me. I was left in hell, very unwell and in great pain and no one would listen to me or take me seriously. Somatisation trivialises symptoms to merely a perception of pain by the Brain, so that it can be dealt with through Cognitive Behavioural Therapy by Psychiatrists. Professor Hooper has written about such misdiagnosis and claims that there is no sound basis for Somatisation as used by Psychiatrists concerning ME/CFS.
Even after requests and letters from a number of Consultants that I was to be seen as quickly as possible in A&E, I would often be left for hours and sent home from A&E when symptoms had abated, only to worsen later on returning home when I was forced to treat myself with antibiotics (from the point that I realised that antibiotics would only stop the symptoms temporarily). This was an extremely dangerous time for me because my symptoms would frequently cause confusion and I only had myself to administer the antibiotics.
I have found evidence that the Head of A&E had written advising one of the Doctors in 2006, concerning an episode of abdominal pain with slurred speech, where I had become unwell, not to perform investigations because he stated that ‘I had been fully investigated’. I had been blamed when early investigations showed no significant abnormality because Consultants had made the wrong investigations and their lack of findings were used as evidence of a lack of symptoms. It has taken until this year for the correct investigations to be started after hundreds of episodes and years of fluctuating illness.
I may never get over my mistreatment by so many NHS Doctors and Consultants who in my case have caused more harm than good and it is likely that many others will have psychological problems after such mistreatment. My treatment was worse than rape and akin to being jailed without a crime. I was bullied and often sent home while in pain and very unwell. Much of my treatment is beyond description and I have lost a great deal.
I also believe that my circumstances may not present a worst case scenario for some facing CFS/ME. Acidosis symptoms can cause, Seizure, Coma and Death. It is highly likely that my own case is anything but idiosyncratic. Other problems that I had before falling unwell, Spinal Injuries and Shoulder Tears became deemed Chronic Fatigue and were left untreated for Decades, and when they were finally diagnosed I could not have surgery because I was frequently too unwell due to the undiagnosed Acidosis symptoms that could have been fatal if surgery had gone ahead. I have been able to have Surgery for the first time just over a week ago that would have gone ahead during the period that I had undiagnosed Acidosis.
The most simple treatment (Dietary with Cyclical Antibiotics) could have been instigated over 17 years ago and I would have been symptom free yet I was repeatedly accused of my problems being psychological. I have given evidence that there is Organic and not a Psychological basis for some CFS/ME sufferers. I have full evidence in support of my allegations in a recent hospital complaint (2016/17), although this document better explains what has happened because I have only recently been fully diagnosed. The diagnosis now fully explains my symptoms over the past 17 years.
Prolonged Acidosis damages cells in particular the Brain where cells cannot be replaced and there is a far greater probability of dementia in later life, so early diagnosis is essential.
If ME/CFS is caused by modern medicines, then it is a profound man made, modern day plague and I believe a symptom of ignorance and long term failure to evaluate modern medicines or complications of medicines, pesticides and chemicals (Professor Malcolm Hooper, Sunderland University).
ME/CFS may have been the first sign of the overuse of Antibiotics, Pesticides and Chemicals, both in Medicine and in Agriculture that has been ignored for decades.This is not a warning shot, nature does not give warnings!
I believe that many more people will become unwell and that ME/CFS is already increasing in children.
If even a subset of ME/CFS patients have either SBBO or D-Lactic symptoms, they need to be investigated and more needs to be done to detect such problems, which I was left to do for myself (patients with D-Lactic symptoms would not be fit for surgery and will remain at risk for complications). I believe that far more patients than just a subset will have these symptoms which cover the ME/CFS range. Treatment is relatively cheap and Dietary intervention greatly simplifies the use of Antibiotics and will greatly unburden NHS and other resources once properly investigated.
I ask for an end to the arrogance and ignorance related to CFS/ME and criminal acts of Psychologists who have created new semantics to sweep the pain of so many under the carpet in a shamanic catastrophe that will greatly undermine their credibility.
Our stories need to be heard.
I ask after many years of mistreatment, and on behalf of many thousands like myself that my contentions and allegations are fully investigated through the NHS by unbiased Consultants such as Professor Gillian Belch of Dundee University and Professor Malcolm Hooper from Sunderland University, who have invested a great deal of their lives into ME/CFS research. It would be good to ask for the opinions of those including myself who have already been failed by the system and obtain a true picture of our needs.
Yours Sincerely, Paul D. Smith.
@Ben H @Janet Dafoe (Rose49) @JaimeS
Interesting story from a patient....his diagnosis and treatment. Perhaps Dr. Davis and team may find this story helpful to their work/research?
Interesting story from a patient....his diagnosis and treatment. Perhaps Dr. Davis and team may find this story helpful to their work/research?
Hi, not eating
Dear Navid,
I sent the email below to the head of the NHS Chief Executive 12/07/2017 and NHS Gloucestershire and also Sally Davies the Chief Medical Officer soon after having realized what was causing my ME/CFS symptoms for 18 years. I have been trying to contact different organisations including the ME Association and many others soon after realizing that my ME/CFS symptoms were in fact D-Lactic acidosis. I also sent to many others as soon as I realized the implications. I now believe that there may be a number of forms of Bacterial Overgrowth causing variations of symptoms from IBS to the worst which I believe to be D-La producing Bacteria. I see this as a hidden plague that acts and has characteristics of infection and poisoning from the toxins produced. Bacterial Overgrowth does not explain the severity or seriousness of the problems it produces. I will try to contact the people who you have suggested. But can I ask all who read this to pass this on to whoever this may benefit and other organisations for further investigation. This may help at the very least a Subset, but I am guessing possibly more. I am hoping the beginning of the end for this enigma, but will need further research.
Email to the Head of Chief Executive and other Officers below:
Fw: For Simon Stephens and Chief Executive Officers; Possible, potential causation of M.E and Chronic Fatigue Syndrome/Fibromyalgia..
PS
Paul Smith
Reply|
Wed 12/07/2017, 19:57
karen.corfield@glos.nhs.uk;
+5 more
This message was sent with high importance.
Show all 8 attachments (4 MB) Download all
Save all to OneDrive - Personal
Dear Sirs,
I am asking that this email is distributed to all managers within the NHS. It is information that concerns ME/CFS sufferers. It may help at the very least a subset of ME/CFS/Fibromyalgia sufferers, but I believe many more.
I was diagnosed with ME/CFS and Fibromyalgia, but have recently been diagnosed with D-Lactic accumulates related to Small Bowel Dysfunction and SBBO.
I believe that it is D-Lactic accumulates which is affecting those most ill with ME/CFS, which causes abnormal systemic neurology due to D-Lactic accumulates. It is what I have been suffering from for the last 17 years and can be controlled through both diet and antibiotics.
Please read the email below.
This information may greatly unburden the NHS and other resources once properly investigated.
Yours Sincerely, Paul D. Smith.
From: Paul Smith <pablo.smith445@hotmail.co.uk>
Sent: 08 July 2017 17:12
To: england.ce@nhs.net; hatherley.enquiries@nhs.net; Malcolm; WRIGHT, Hannah; Frances Hathorn; J.J.F.Belch@Dundee.ac.uk; charles.c.shepherd@btinternet.com; Ian Smith; las.lewis@hotmail.co.uk; lorrainprothero@googlemail.com; lorraineprothero@googlemail.com; Lynda Crow; Trish Davidson
Subject: For Simon Stephens and Chief Executive Officers; Possible, potential causation of M.E and Chronic Fatigue Syndrome/Fibromyalgia..
From Mr. Paul D. Smith,
41, Fernleigh Crescent,
Up Hatherley,
Cheltenham, Glos.
GL513QJ.
Most Urgent. 05/07/2017.
Copy to; Dr. Rebecca Milford, Professor Malcolm Hooper, Dr. Jillian Belch, Dr. Charles Shepherd, Alex Chalk M.P.
For Simon Stephens; Chief Executive and all Executive Officers of NHS England, including Bath and Gloucestershire, on behalf of myself and many thousands of others suffering from ‘ME/CFS and Fibromyalgia’ concerning the possible, potential causation of ME/CFS; through Small Bowel Dysfunction, Small Bowel Bacterial Overgrowth (SBBO) causing Abnormal Fatigue; and related to D-isomer of Lactate accumulates which may be greatly underdiagnosed and the cause of Neurological Symptoms in patients with ME/CFS.
Dear Sirs,
I was diagnosed with ME/CFS/Fibromyalgia, having milder symptoms before 1999 but became very unwell from 1999, and have remained frequently unwell for over 17 years without diagnosis until most recently in February 2017. I am now receiving treatment to suppress D-Lactic Acidosis symptoms, and I believe that although my Symptoms are D-Lactic Acidosis related to SBBO that my symptoms may correlate to ME/CFS in many others. D-isomer of Lactate accumulates have been the cause of fluctuating illness and abnormal Neurology in myself, due to an inability to metabolise Carbohydrates and Simple Sugars, but my illness had been diagnosed as ME/CFS. I believe that at the very least a subset, but suspect far more sufferers of ME/CFS may have been misdiagnosed like myself and I ask for the NHS to investigation to look for SBBO and D-Lactic Acidosis in those with ME/CFS, which I believe to have been overlooked as the possible/potential causation of Encephalopathy and Neurological symptoms that patients have been describing for decades.
I am offering evidence of Organic causation in ME/CFS and also of the severity of symptoms encountered by ME/CFS patients whose symptoms have been treated as Psychological or Somatic (please read my story). The severity of symptoms is virtually undetectable except through specific Blood Gas tests. D-isomer of Lactate cannot be properly metabolised and enters both blood stream and then spinal fluid and acts as a toxin or poison to produce systemic neurological problems. This may fluctuate or be profound at times and cause episodes of extremely painful and distressing systemic symptoms affecting areas such as muscle weakness and pain, tachyarrhythmia’s, respiratory system and cognition, causing confusion and breathing difficulty.
My reason for writing is that I believe, like myself, many CFS/ME/Fibromyalgia sufferers have not been taken seriously, are often misdiagnosed and often mistreated (please ask for their opinions), or given psychological diagnoses and the most inappropriate treatments in the past such as Pace Trials, and offered Cognitive Behavioural Therapy instead of treatment (Professor Malcolm Hooper, Sunderland University). I believe that at least a subset of ME/CFS sufferers and possibly many more may have developed Bacterial Overgrowth and that some may have developed far more serious D-Lactic Symptoms which affect Systemic Neurological Abnormality as described by M.E. patients), which may be far more common than is understood (Please read attachment by Dr. Luke White; D-Lactic Acidosis, more prevalent than we think?; Nutrition Issues In Gastroenterology/ Carol Rees Parrish; Series Editor).
Dr. White states that anyone with SBBO is at risk of developing D-isomer of Lactate accumulates and I have developed such accumulates (without short bowel syndrome) which have caused me frequent profound and painful symptoms, that now respond to both Abstention Diet for Carbohydrates/ Simple Sugars combined with Cyclical Antibiotic Therapy (although I have developed Antibiotic resistance because of the prolonged time that it has taken to receive treatment).
I believe SBBO/D-Lactate to be the source of ME/CFS in many sufferers. Dr.White had written because he believes that D-Lactic accumulations affect a broader group of patients than initially thought (attachment title). From statistical data during one survey 100% of Fibromyalgia patients were found to have SBBO and there are many similar survey results for CFS.
I must emphasize that I am not talking about Chronic Fatigue due to Depression or similar disorders. But Chronic Fatigue Syndrome as understood by the CFS/ME Association/Dr. Charles Shepherd (although those with CFS/ME often suffer depression secondary to CFS/ME).
I contend that these problems may be due to Modern Medicine; in particular Antibiotics (overuse in medicine and in agriculture that can cause overwhelming bias towards Lactic Acid producing Bacteria and Overgrowth and GUT flora disturbances), NSAIDs which are known to damage the mucosal lining of the GUT and cause much other damage leading to SBBO, Stomach Acid Suppressants allowing bacteria to thrive where it normally would not and also Pesticides and Chemicals (Professor Malcolm Hooper) may take part in a chain of events that can lead to Bacterial Overgrowth and accumulations of D-Lactate and generate abnormal Neurological symptoms, much like ME/CFS symptoms affecting many thousands of people across the world.
SBBO alone can cause prolonged problems with abnormal Fatigue, loss of Nutrients, Vitamins, Mucosal Damage, and Blood Sugar disturbances such as Hypoglycaemia and may be a stage in severity of illness, where more severe illness and Neurological symptoms are related to D-isomer of Lactate accumulates which are not investigated in CFS/ME patients.
I have only recently been diagnosed and I am now receiving treatment for this illness that has caused me frequent severe systemic neurological symptoms and episodes that I had expected to die from, when a number of Doctors had treated the symptoms as due to Anxiety or as Psychological from 1999. I had remained very unwell for over 17 years. I was frequently told that I had Chronic Fatigue, M.E. and when illness had greatly worsened after two years of increasing Abdominal Pain, Breathing Difficulty and other symptoms by 2001, I was told that my problems were all psychological and I was then given a formal Somatisation Disorder, which had greatly obstructed any chance of diagnosis.
I had frequent periods of fluctuating illness from just feeling unwell with abnormal fatigue, to extreme episodes and multiple systemic symptoms affecting Abdominal Pain, Muscle Weakness and Muscle Pain, Breathing Difficulty much like Suffocation, Slurred Speech, Drunk like Confusion, Memory difficulty, Tachyarrhythmia’s and even my Sight and Hearing was affected by ringing as symptoms worsened (please see ME/CFS symptom descriptions in; ‘What is ME, What is CFS’ Professor Malcolm Hooper, E. P. Marshall and M. Williams/ ME Research UK).
I was lucky, in that I later realised that all symptoms of my illness ceased temporarily after using antibiotics and thought that the serious systemic symptoms were Infection, which led to receiving the first stage of diagnosis for SBBO from Dr. Ray Shidrawi in 2015, although SBBO did not explain my more severe symptoms. But Antibiotics began to become increasingly ineffective within months of my appointment and soon after this I was moving from antibiotic to antibiotic with only days between before having to start another antibiotic course, and this had continued for over a year and a half until recent diagnosis. I realised just as my symptoms were becoming impossible to manage through antibiotics in February this year when I could no longer control the symptoms, and was not expecting to survive that my symptoms were D-Lactic Acidosis and I was given treatment by Dr. Tom Creed from Bristol University, for which I am extremely grateful (to both Gastroenterologists).
I have become Resistant to a number of important Antibiotics due to the prolonged delay in treating my symptoms, and there may be further implications concerning my future treatment and any future Antibiotic use. My situation should never have evolved for so long, but I was just not taken seriously. The Somatisation disorder has been frequently referred to since being misdiagnosed by very poor Doctors who did not recognise or investigate my symptoms when I first fell ill from 1999 that no further investigations were carried out on my behalf. I was later forced to diagnose my own problems and go for help ‘out of county’. I have never encountered so much arrogance or ignorance.
During one of the worst episodes of illness and breathing difficulty I was left by A&E in a room on my own without observation, staff or investigations from overnight until the following day before seeing a Doctor (I was not even offered anything to drink). Later in 2003, I was refused an OOH’s visit after waking during the night close to losing consciousness during an episode, because the Doctor stated that I was ‘Drunk’ and believed that my slurred speech and confusion were symptoms of Alcohol.
I had a very good Doctor in 2003, who stated that I was not suffering from Somatisation, (as did the Hospital Consultant at that time and other Doctors), the Doctor wrote a letter to A&E entitled ‘Drunk not Drunk’ in response to the OOH’s refusal to visit me during one of many (hundreds of episodes from that time until this year). Both the Doctor and Hospital Consultant had asked for Blood Gasses to be taken by A&E, but they were never taken or investigated even after frequent illness, pain, slurred speech, drunk like confusion, breathing difficulty, hyperventilation, abdominal pain and seizure.
The same Doctor wrote again in 2013 about my Drunk like behaviour, but no Blood Gas investigations were ever done. During a more recent episode in 2015, I was left without an OOH’s call out again during an episode, even after starting to develop confusion, and I no longer trust either OOH’S or A&E. Senior Doctors at one practise would not visit while I was ill and would refer me back to make an appointment with my own Doctor, which could take weeks, when I called with illness, slurred speech, or confusion as if I was being a nuisance.
No investigations were ever carried out by A&E even after Blood Gasses had been requested by a Consultant.
I understand why so many with CFS/ME have thought of, or committed suicide. I was close to suicide in 2001, (the year that I was given a Somatisation Disorder instead of treatment), because I could no longer tolerate either the pain or the severity of symptoms which included breathing difficulty like suffocation. Even after telling the Psychologist who gave the Somatisation Disorder that I may have to suicide if I could not get any help, I was dismissed directly after the Somatisation and left to fend for myself with no further help from the psychiatrist (which was worse than receiving a life sentence).
Even after three Doctors had made statements that I was not Somatising or suffering from Anxiety in 2003, I was never taken seriously during episodes including breathing difficulty in A&E and no investigations were ever performed for Blood Gasses requested from that date.
I have developed great issues with the trust of Doctors ever since the Somatisation was originally misdiagnosed by a Consultant in the Pain Clinic in 2001, who treated me in the most belligerently aggressive manner and recommended that I should be seen by as few Doctors as possible and should have no further investigations. The same Pain Clinic Doctor would not listen to anything that I had to say and even boasted in a letter that he had shut me up by challenging me. I was left in hell, very unwell and in great pain and no one would listen to me or take me seriously. Somatisation trivialises symptoms to merely a perception of pain by the Brain, so that it can be dealt with through Cognitive Behavioural Therapy by Psychiatrists. Professor Hooper has written about such misdiagnosis and claims that there is no sound basis for Somatisation as used by Psychiatrists concerning ME/CFS.
Even after requests and letters from a number of Consultants that I was to be seen as quickly as possible in A&E, I would often be left for hours and sent home from A&E when symptoms had abated, only to worsen later on returning home when I was forced to treat myself with antibiotics (from the point that I realised that antibiotics would only stop the symptoms temporarily). This was an extremely dangerous time for me because my symptoms would frequently cause confusion and I only had myself to administer the antibiotics.
I have found evidence that the Head of A&E had written advising one of the Doctors in 2006, concerning an episode of abdominal pain with slurred speech, where I had become unwell, not to perform investigations because he stated that ‘I had been fully investigated’. I had been blamed when early investigations showed no significant abnormality because Consultants had made the wrong investigations and their lack of findings were used as evidence of a lack of symptoms. It has taken until this year for the correct investigations to be started after hundreds of episodes and years of fluctuating illness.
I may never get over my mistreatment by so many NHS Doctors and Consultants who in my case have caused more harm than good and it is likely that many others will have psychological problems after such mistreatment. My treatment was worse than rape and akin to being jailed without a crime. I was bullied and often sent home while in pain and very unwell. Much of my treatment is beyond description and I have lost a great deal.
I also believe that my circumstances may not present a worst case scenario for some facing CFS/ME. Acidosis symptoms can cause, Seizure, Coma and Death. It is highly likely that my own case is anything but idiosyncratic. Other problems that I had before falling unwell, Spinal Injuries and Shoulder Tears became deemed Chronic Fatigue and were left untreated for Decades, and when they were finally diagnosed I could not have surgery because I was frequently too unwell due to the undiagnosed Acidosis symptoms that could have been fatal if surgery had gone ahead. I have been able to have Surgery for the first time just over a week ago that would have gone ahead during the period that I had undiagnosed Acidosis.
The most simple treatment (Dietary with Cyclical Antibiotics) could have been instigated over 17 years ago and I would have been symptom free yet I was repeatedly accused of my problems being psychological. I have given evidence that there is Organic and not a Psychological basis for some CFS/ME sufferers. I have full evidence in support of my allegations in a recent hospital complaint (2016/17), although this document better explains what has happened because I have only recently been fully diagnosed. The diagnosis now fully explains my symptoms over the past 17 years.
Prolonged Acidosis damages cells in particular the Brain where cells cannot be replaced and there is a far greater probability of dementia in later life, so early diagnosis is essential.
If ME/CFS is caused by modern medicines, then it is a profound man made, modern day plague and I believe a symptom of ignorance and long term failure to evaluate modern medicines or complications of medicines, pesticides and chemicals (Professor Malcolm Hooper, Sunderland University).
ME/CFS may have been the first sign of the overuse of Antibiotics, Pesticides and Chemicals, both in Medicine and in Agriculture that has been ignored for decades.This is not a warning shot, nature does not give warnings!
I believe that many more people will become unwell and that ME/CFS is already increasing in children.
If even a subset of ME/CFS patients have either SBBO or D-Lactic symptoms, they need to be investigated and more needs to be done to detect such problems, which I was left to do for myself (patients with D-Lactic symptoms would not be fit for surgery and will remain at risk for complications). I believe that far more patients than just a subset will have these symptoms which cover the ME/CFS range. Treatment is relatively cheap and Dietary intervention greatly simplifies the use of Antibiotics and will greatly unburden NHS and other resources once properly investigated.
I ask for an end to the arrogance and ignorance related to CFS/ME and criminal acts of Psychologists who have created new semantics to sweep the pain of so many under the carpet in a shamanic catastrophe that will greatly undermine their credibility.
Our stories need to be heard.
I ask after many years of mistreatment, and on behalf of many thousands like myself that my contentions and allegations are fully investigated through the NHS by unbiased Consultants such as Professor Gillian Belch of Dundee University and Professor Malcolm Hooper from Sunderland University, who have invested a great deal of their lives into ME/CFS research. It would be good to ask for the opinions of those including myself who have already been failed by the system and obtain a true picture of our needs.
Yours Sincerely, Paul D. Smith.
Hi, not eating
Dear Navid,
I sent the email below to the head of the NHS Chief Executive 12/07/2017 and NHS Gloucestershire and also Sally Davies the Chief Medical Officer soon after having realized what was causing my ME/CFS symptoms for 18 years. I have been trying to contact different organisations including the ME Association and many others soon after realizing that my ME/CFS symptoms were in fact D-Lactic acidosis. I also sent to many others as soon as I realized the implications. I now believe that there may be a number of forms of Bacterial Overgrowth causing variations of symptoms from IBS to the worst which I believe to be D-La producing Bacteria. I see this as a hidden plague that acts and has characteristics of infection and poisoning from the toxins produced. Bacterial Overgrowth does not explain the severity or seriousness of the problems it produces. I will try to contact the people who you have suggested. But can I ask all who read this to pass this on to whoever this may benefit and other organisations for further investigation. This may help at the very least a Subset, but I am guessing possibly more. I am hoping the beginning of the end for this enigma, but will need further research.
Email to the Head of Chief Executive and other Officers below:
Fw: For Simon Stephens and Chief Executive Officers; Possible, potential causation of M.E and Chronic Fatigue Syndrome/Fibromyalgia..
PS
Paul Smith
Reply|
Wed 12/07/2017, 19:57
karen.corfield@glos.nhs.uk;
+5 more
This message was sent with high importance.
Show all 8 attachments (4 MB) Download all
Save all to OneDrive - Personal
Dear Sirs,
I am asking that this email is distributed to all managers within the NHS. It is information that concerns ME/CFS sufferers. It may help at the very least a subset of ME/CFS/Fibromyalgia sufferers, but I believe many more.
I was diagnosed with ME/CFS and Fibromyalgia, but have recently been diagnosed with D-Lactic accumulates related to Small Bowel Dysfunction and SBBO.
I believe that it is D-Lactic accumulates which is affecting those most ill with ME/CFS, which causes abnormal systemic neurology due to D-Lactic accumulates. It is what I have been suffering from for the last 17 years and can be controlled through both diet and antibiotics.
Please read the email below.
This information may greatly unburden the NHS and other resources once properly investigated.
Yours Sincerely, Paul D. Smith.
From: Paul Smith <pablo.smith445@hotmail.co.uk>
Sent: 08 July 2017 17:12
To: england.ce@nhs.net; hatherley.enquiries@nhs.net; Malcolm; WRIGHT, Hannah; Frances Hathorn; J.J.F.Belch@Dundee.ac.uk; charles.c.shepherd@btinternet.com; Ian Smith; las.lewis@hotmail.co.uk; lorrainprothero@googlemail.com; lorraineprothero@googlemail.com; Lynda Crow; Trish Davidson
Subject: For Simon Stephens and Chief Executive Officers; Possible, potential causation of M.E and Chronic Fatigue Syndrome/Fibromyalgia..
From Mr. Paul D. Smith,
41, Fernleigh Crescent,
Up Hatherley,
Cheltenham, Glos.
GL513QJ.
Most Urgent. 05/07/2017.
Copy to; Dr. Rebecca Milford, Professor Malcolm Hooper, Dr. Jillian Belch, Dr. Charles Shepherd, Alex Chalk M.P.
For Simon Stephens; Chief Executive and all Executive Officers of NHS England, including Bath and Gloucestershire, on behalf of myself and many thousands of others suffering from ‘ME/CFS and Fibromyalgia’ concerning the possible, potential causation of ME/CFS; through Small Bowel Dysfunction, Small Bowel Bacterial Overgrowth (SBBO) causing Abnormal Fatigue; and related to D-isomer of Lactate accumulates which may be greatly underdiagnosed and the cause of Neurological Symptoms in patients with ME/CFS.
Dear Sirs,
I was diagnosed with ME/CFS/Fibromyalgia, having milder symptoms before 1999 but became very unwell from 1999, and have remained frequently unwell for over 17 years without diagnosis until most recently in February 2017. I am now receiving treatment to suppress D-Lactic Acidosis symptoms, and I believe that although my Symptoms are D-Lactic Acidosis related to SBBO that my symptoms may correlate to ME/CFS in many others. D-isomer of Lactate accumulates have been the cause of fluctuating illness and abnormal Neurology in myself, due to an inability to metabolise Carbohydrates and Simple Sugars, but my illness had been diagnosed as ME/CFS. I believe that at the very least a subset, but suspect far more sufferers of ME/CFS may have been misdiagnosed like myself and I ask for the NHS to investigation to look for SBBO and D-Lactic Acidosis in those with ME/CFS, which I believe to have been overlooked as the possible/potential causation of Encephalopathy and Neurological symptoms that patients have been describing for decades.
I am offering evidence of Organic causation in ME/CFS and also of the severity of symptoms encountered by ME/CFS patients whose symptoms have been treated as Psychological or Somatic (please read my story). The severity of symptoms is virtually undetectable except through specific Blood Gas tests. D-isomer of Lactate cannot be properly metabolised and enters both blood stream and then spinal fluid and acts as a toxin or poison to produce systemic neurological problems. This may fluctuate or be profound at times and cause episodes of extremely painful and distressing systemic symptoms affecting areas such as muscle weakness and pain, tachyarrhythmia’s, respiratory system and cognition, causing confusion and breathing difficulty.
My reason for writing is that I believe, like myself, many CFS/ME/Fibromyalgia sufferers have not been taken seriously, are often misdiagnosed and often mistreated (please ask for their opinions), or given psychological diagnoses and the most inappropriate treatments in the past such as Pace Trials, and offered Cognitive Behavioural Therapy instead of treatment (Professor Malcolm Hooper, Sunderland University). I believe that at least a subset of ME/CFS sufferers and possibly many more may have developed Bacterial Overgrowth and that some may have developed far more serious D-Lactic Symptoms which affect Systemic Neurological Abnormality as described by M.E. patients), which may be far more common than is understood (Please read attachment by Dr. Luke White; D-Lactic Acidosis, more prevalent than we think?; Nutrition Issues In Gastroenterology/ Carol Rees Parrish; Series Editor).
Dr. White states that anyone with SBBO is at risk of developing D-isomer of Lactate accumulates and I have developed such accumulates (without short bowel syndrome) which have caused me frequent profound and painful symptoms, that now respond to both Abstention Diet for Carbohydrates/ Simple Sugars combined with Cyclical Antibiotic Therapy (although I have developed Antibiotic resistance because of the prolonged time that it has taken to receive treatment).
I believe SBBO/D-Lactate to be the source of ME/CFS in many sufferers. Dr.White had written because he believes that D-Lactic accumulations affect a broader group of patients than initially thought (attachment title). From statistical data during one survey 100% of Fibromyalgia patients were found to have SBBO and there are many similar survey results for CFS.
I must emphasize that I am not talking about Chronic Fatigue due to Depression or similar disorders. But Chronic Fatigue Syndrome as understood by the CFS/ME Association/Dr. Charles Shepherd (although those with CFS/ME often suffer depression secondary to CFS/ME).
I contend that these problems may be due to Modern Medicine; in particular Antibiotics (overuse in medicine and in agriculture that can cause overwhelming bias towards Lactic Acid producing Bacteria and Overgrowth and GUT flora disturbances), NSAIDs which are known to damage the mucosal lining of the GUT and cause much other damage leading to SBBO, Stomach Acid Suppressants allowing bacteria to thrive where it normally would not and also Pesticides and Chemicals (Professor Malcolm Hooper) may take part in a chain of events that can lead to Bacterial Overgrowth and accumulations of D-Lactate and generate abnormal Neurological symptoms, much like ME/CFS symptoms affecting many thousands of people across the world.
SBBO alone can cause prolonged problems with abnormal Fatigue, loss of Nutrients, Vitamins, Mucosal Damage, and Blood Sugar disturbances such as Hypoglycaemia and may be a stage in severity of illness, where more severe illness and Neurological symptoms are related to D-isomer of Lactate accumulates which are not investigated in CFS/ME patients.
I have only recently been diagnosed and I am now receiving treatment for this illness that has caused me frequent severe systemic neurological symptoms and episodes that I had expected to die from, when a number of Doctors had treated the symptoms as due to Anxiety or as Psychological from 1999. I had remained very unwell for over 17 years. I was frequently told that I had Chronic Fatigue, M.E. and when illness had greatly worsened after two years of increasing Abdominal Pain, Breathing Difficulty and other symptoms by 2001, I was told that my problems were all psychological and I was then given a formal Somatisation Disorder, which had greatly obstructed any chance of diagnosis.
I had frequent periods of fluctuating illness from just feeling unwell with abnormal fatigue, to extreme episodes and multiple systemic symptoms affecting Abdominal Pain, Muscle Weakness and Muscle Pain, Breathing Difficulty much like Suffocation, Slurred Speech, Drunk like Confusion, Memory difficulty, Tachyarrhythmia’s and even my Sight and Hearing was affected by ringing as symptoms worsened (please see ME/CFS symptom descriptions in; ‘What is ME, What is CFS’ Professor Malcolm Hooper, E. P. Marshall and M. Williams/ ME Research UK).
I was lucky, in that I later realised that all symptoms of my illness ceased temporarily after using antibiotics and thought that the serious systemic symptoms were Infection, which led to receiving the first stage of diagnosis for SBBO from Dr. Ray Shidrawi in 2015, although SBBO did not explain my more severe symptoms. But Antibiotics began to become increasingly ineffective within months of my appointment and soon after this I was moving from antibiotic to antibiotic with only days between before having to start another antibiotic course, and this had continued for over a year and a half until recent diagnosis. I realised just as my symptoms were becoming impossible to manage through antibiotics in February this year when I could no longer control the symptoms, and was not expecting to survive that my symptoms were D-Lactic Acidosis and I was given treatment by Dr. Tom Creed from Bristol University, for which I am extremely grateful (to both Gastroenterologists).
I have become Resistant to a number of important Antibiotics due to the prolonged delay in treating my symptoms, and there may be further implications concerning my future treatment and any future Antibiotic use. My situation should never have evolved for so long, but I was just not taken seriously. The Somatisation disorder has been frequently referred to since being misdiagnosed by very poor Doctors who did not recognise or investigate my symptoms when I first fell ill from 1999 that no further investigations were carried out on my behalf. I was later forced to diagnose my own problems and go for help ‘out of county’. I have never encountered so much arrogance or ignorance.
During one of the worst episodes of illness and breathing difficulty I was left by A&E in a room on my own without observation, staff or investigations from overnight until the following day before seeing a Doctor (I was not even offered anything to drink). Later in 2003, I was refused an OOH’s visit after waking during the night close to losing consciousness during an episode, because the Doctor stated that I was ‘Drunk’ and believed that my slurred speech and confusion were symptoms of Alcohol.
I had a very good Doctor in 2003, who stated that I was not suffering from Somatisation, (as did the Hospital Consultant at that time and other Doctors), the Doctor wrote a letter to A&E entitled ‘Drunk not Drunk’ in response to the OOH’s refusal to visit me during one of many (hundreds of episodes from that time until this year). Both the Doctor and Hospital Consultant had asked for Blood Gasses to be taken by A&E, but they were never taken or investigated even after frequent illness, pain, slurred speech, drunk like confusion, breathing difficulty, hyperventilation, abdominal pain and seizure.
The same Doctor wrote again in 2013 about my Drunk like behaviour, but no Blood Gas investigations were ever done. During a more recent episode in 2015, I was left without an OOH’s call out again during an episode, even after starting to develop confusion, and I no longer trust either OOH’S or A&E. Senior Doctors at one practise would not visit while I was ill and would refer me back to make an appointment with my own Doctor, which could take weeks, when I called with illness, slurred speech, or confusion as if I was being a nuisance.
No investigations were ever carried out by A&E even after Blood Gasses had been requested by a Consultant.
I understand why so many with CFS/ME have thought of, or committed suicide. I was close to suicide in 2001, (the year that I was given a Somatisation Disorder instead of treatment), because I could no longer tolerate either the pain or the severity of symptoms which included breathing difficulty like suffocation. Even after telling the Psychologist who gave the Somatisation Disorder that I may have to suicide if I could not get any help, I was dismissed directly after the Somatisation and left to fend for myself with no further help from the psychiatrist (which was worse than receiving a life sentence).
Even after three Doctors had made statements that I was not Somatising or suffering from Anxiety in 2003, I was never taken seriously during episodes including breathing difficulty in A&E and no investigations were ever performed for Blood Gasses requested from that date.
I have developed great issues with the trust of Doctors ever since the Somatisation was originally misdiagnosed by a Consultant in the Pain Clinic in 2001, who treated me in the most belligerently aggressive manner and recommended that I should be seen by as few Doctors as possible and should have no further investigations. The same Pain Clinic Doctor would not listen to anything that I had to say and even boasted in a letter that he had shut me up by challenging me. I was left in hell, very unwell and in great pain and no one would listen to me or take me seriously. Somatisation trivialises symptoms to merely a perception of pain by the Brain, so that it can be dealt with through Cognitive Behavioural Therapy by Psychiatrists. Professor Hooper has written about such misdiagnosis and claims that there is no sound basis for Somatisation as used by Psychiatrists concerning ME/CFS.
Even after requests and letters from a number of Consultants that I was to be seen as quickly as possible in A&E, I would often be left for hours and sent home from A&E when symptoms had abated, only to worsen later on returning home when I was forced to treat myself with antibiotics (from the point that I realised that antibiotics would only stop the symptoms temporarily). This was an extremely dangerous time for me because my symptoms would frequently cause confusion and I only had myself to administer the antibiotics.
I have found evidence that the Head of A&E had written advising one of the Doctors in 2006, concerning an episode of abdominal pain with slurred speech, where I had become unwell, not to perform investigations because he stated that ‘I had been fully investigated’. I had been blamed when early investigations showed no significant abnormality because Consultants had made the wrong investigations and their lack of findings were used as evidence of a lack of symptoms. It has taken until this year for the correct investigations to be started after hundreds of episodes and years of fluctuating illness.
I may never get over my mistreatment by so many NHS Doctors and Consultants who in my case have caused more harm than good and it is likely that many others will have psychological problems after such mistreatment. My treatment was worse than rape and akin to being jailed without a crime. I was bullied and often sent home while in pain and very unwell. Much of my treatment is beyond description and I have lost a great deal.
I also believe that my circumstances may not present a worst case scenario for some facing CFS/ME. Acidosis symptoms can cause, Seizure, Coma and Death. It is highly likely that my own case is anything but idiosyncratic. Other problems that I had before falling unwell, Spinal Injuries and Shoulder Tears became deemed Chronic Fatigue and were left untreated for Decades, and when they were finally diagnosed I could not have surgery because I was frequently too unwell due to the undiagnosed Acidosis symptoms that could have been fatal if surgery had gone ahead. I have been able to have Surgery for the first time just over a week ago that would have gone ahead during the period that I had undiagnosed Acidosis.
The most simple treatment (Dietary with Cyclical Antibiotics) could have been instigated over 17 years ago and I would have been symptom free yet I was repeatedly accused of my problems being psychological. I have given evidence that there is Organic and not a Psychological basis for some CFS/ME sufferers. I have full evidence in support of my allegations in a recent hospital complaint (2016/17), although this document better explains what has happened because I have only recently been fully diagnosed. The diagnosis now fully explains my symptoms over the past 17 years.
Prolonged Acidosis damages cells in particular the Brain where cells cannot be replaced and there is a far greater probability of dementia in later life, so early diagnosis is essential.
If ME/CFS is caused by modern medicines, then it is a profound man made, modern day plague and I believe a symptom of ignorance and long term failure to evaluate modern medicines or complications of medicines, pesticides and chemicals (Professor Malcolm Hooper, Sunderland University).
ME/CFS may have been the first sign of the overuse of Antibiotics, Pesticides and Chemicals, both in Medicine and in Agriculture that has been ignored for decades.This is not a warning shot, nature does not give warnings!
I believe that many more people will become unwell and that ME/CFS is already increasing in children.
If even a subset of ME/CFS patients have either SBBO or D-Lactic symptoms, they need to be investigated and more needs to be done to detect such problems, which I was left to do for myself (patients with D-Lactic symptoms would not be fit for surgery and will remain at risk for complications). I believe that far more patients than just a subset will have these symptoms which cover the ME/CFS range. Treatment is relatively cheap and Dietary intervention greatly simplifies the use of Antibiotics and will greatly unburden NHS and other resources once properly investigated.
I ask for an end to the arrogance and ignorance related to CFS/ME and criminal acts of Psychologists who have created new semantics to sweep the pain of so many under the carpet in a shamanic catastrophe that will greatly undermine their credibility.
Our stories need to be heard.
I ask after many years of mistreatment, and on behalf of many thousands like myself that my contentions and allegations are fully investigated through the NHS by unbiased Consultants such as Professor Gillian Belch of Dundee University and Professor Malcolm Hooper from Sunderland University, who have invested a great deal of their lives into ME/CFS research. It would be good to ask for the opinions of those including myself who have already been failed by the system and obtain a true picture of our needs.
Yours Sincerely, Paul D. Smith.
Dear Navid,
I have just contacted Professor Ron Davis, email below. Could you pass this on to his wife, Janet Dafoe in case it does not reach him. I have also found another 2 abstracts of interest which show that there are others who are thinking in the same direction. I am hoping to be able to go back to working as a Sculptor with a clear conscience once I have made other ME/CFS aware of the possibility. I am still in a state of disbelief that Doctors and supposedly intelligent 'men' have ignored so many in distress for so long. My main anger is directed towards Psychiatrists such as Wessely who have made a living off the backs of those who cannot defend themselves (Wessely established the lack of relationship between Hyperventilation and ME/CFS . Hyperventilation is a natural phenomenum in D-Lactic acidosis where respiratory compensation of acidosis occurs by Hyperventilation).
ME/CFS Bacterial Overgrowth/D-Lactic acidosis. From Paul Smith, England, UK.
Paul Smith
Reply|
Today, 23:17
info@omf.ngo;
linda@omf.ngo;
marilyn@omf.ngo;
krhong@stanford.edu
This message was sent with high importance.
Dear Sirs,
I am trying to contact Professor Ron Davis after being told about his sons plight. I was an ME/CFS patient who has recently been diagnosed with D-Lactic acidosis. It was suggested that I contact you.
I was ill for 18 years and diagnosed with ME/CFS and even Fibromyalgia. I had often serious symptoms that I expected to die from or have to commit suicide.
I was diagnosed first of all with Bacterial Overgrowth and then D-Lactic acidosis in February 2017 for the same D-Lactic symptoms and was given an exclusion diet free from Carbohydrates and Simple sugars. I then realized the implications and have been contacting others with similar symptoms.
I had D-La without short bowel syndrome or any structural problems and realized that if I can have the problem without Short bowel syndrome then it is possible that others may also have the same problem. D-Lactic acidosis has been found to cause neurological symptoms similar to ME/CFS. Many ME/CFS also have Gastrointestinal symptoms of IBS or Bacterial Overgrowth.
I have found a great deal of evidence (report abstracts below) and research that points to Bacterial Overgrowth and D-Lactic acidosis being the cause of at least a subset of ME/CFS patients. I now believe that there may be a number of possible variants of Bacterial Overgrowth of which IBS and D-Lactic acidosis are both known to respond to antibiotics. There may be a number of different permutations or combinations of bacteria involved in Bacterial Overgrowth.
I noticed that Dizziness was mentioned in Professor Davis recording at the Open Medicine Foundation. Jennifer Brea also mentions this (and frequent 'infections'). I suffered frequent intermittent periods of dizziness with what felt like infections and also had periods of confusion and slurred Speech during the worst episodes as well as a number of other problems including breathing difficulty, muscle pain and weakness and abdominal pain. I also had tachyarrhythmias during exaccerbations when D-Lactic levels would be increased due to Carbohydrate/Sugar intake.
I even had headaches, blurred vision and ringing ears as well as pin prick sensations as illness worsened and difficulty thinking with memory difficulty. The worst episodes could affect me slightly differently, sometimes just dizziness or abdominal pain and others a range of terrifying symptoms. I often felt that I had climbed a mountain without oxygen and frequently described my illness as 'infections' which could feel like Flu at first.
I also had frequent Gastrointestinal symptoms although they were not the worst symptoms they are significant for Bacterial Overgrowth which can also give constipation or diarrhea (from either methane or hydrogen producing bacteria). Gastrointestinal symptoms are mild compared to the illness which comes with D-Lactic acidosis. I now believe that there may be a number of variants of Bacterial Overgrowth from milder IBS symptoms to more serious D-Lactic symptoms. I also believe that Bacterial Overgrowth is greatly underestimated and that D-Lactic acidosis is more prevalent than previously understood (Dr. Luke White 'D-Lactic acidosis more prevalent than we think').
It took 18 years in which my symptoms although serious were dismissed and I was so unwell I was expecting to die or have to commit suicide because of the traumatic symptoms and pain. I am now trying to make others aware of the possibility and I also believe that D-La may no longer be a rare condition or related purely to Short Bowel Syndrome (the possible reason that it has evaded understanding).
I was lucky in that I noticed that my symptoms would cease temporarily after antibiotics, which was not understood by any of the Doctors who I related this to, but was picked up by a Gastroenterologist. I later realized that my worst symptoms although deemed ME/CFS were identical to D-La and paid for a D-Lactic Consultant privately who confirmed that I was correct.
There are two very easy tests for both Bacterial Overgrowth and D-Lactic acidosis without Blood Gasses. Response to Antibiotics such as Metronidazole and exclusion diet of 0%Carbohydrates and Sugars.
I have a lot more information if needed including some extracts below. I hope and pray that a cure is found for your son.
Increased D-Lactic Acid Intestinal Bacteria in Patients with Chronic Fatigue Syndrome
- JOHN R. SHEEDY1,
- RICHARD E.H. WETTENHALL1,
- DENIS SCANLON2,
- PAUL R. GOOLEY1,
- DONALD P. LEWIS3,
- NEIL MCGREGOR4,
- DAVID I. STAPLETON1,
- HENRY L. BUTT5 and
- KENNY L. DE MEIRLEIR6
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.
Indicator of chronic fatigue syndrome found in gut bacteria | Cornell Chronicle | 24 June 2016
From The Cornell Chronicle (Cornell University website) | 24 June 2016 | story by Krishna Ramanujan.
Physicians have been mystified by chronic fatigue syndrome, a condition where normal exertion leads to debilitating fatigue that isn’t alleviated by rest. There are no known triggers, and diagnosis requires lengthy tests administered by an expert.
Due to this lack of information, some people have even suggested the disease may be psychosomatic.
Now, for the first time, Cornell researchers report they have identified biological markers of the disease in gut bacteria and inflammatory microbial agents in the blood.
In a study published June 23 in the journal Microbiome, the team describes how they correctly diagnosed myalgic encephalomyeletis/chronic fatigue syndrome (ME/CFS) in 83 percent of patients through stool samples and blood work, offering a noninvasive diagnosis and a step toward understanding the cause of the disease.
“Our work demonstrates that the gut bacterial microbiome in ME/CFS patients isn’t normal, perhaps leading to gastrointestinal and inflammatory symptoms in victims of the disease,” said Maureen Hanson, the Liberty Hyde Bailey Professor in the Department of Molecular Biology and Genetics and the paper’s senior author. “Furthermore, our detection of a biological abnormality provides further evidence against the ridiculous concept that the disease is psychological in origin,”
Ruth Ley, associate professor in the Departments of Molecular Biology and Genetics and Microbiology, is a co-author.
“In the future, we could see this technique as a complement to other noninvasive diagnoses, but if we have a better idea of what is going on with these gut microbes and patients, maybe clinicians could consider changing diets, using prebiotics such as dietary fibers or probiotics to help treat the disease,” said Ludovic Giloteaux, a postdoctoral researcher in both Hanson’s and Ley’s labs and first author of the study.
Researchers have evidence that an overactive immune system plays a role in chronic fatigue. Symptoms include fatigue even after sleep, muscle and joint pain, migraines and gastrointestinal distress. One hallmark of the condition is post-exertional malaise, meaning patients may take weeks to recover from minor exertion. To test for ME/CFS, clinicians may give patients a cardio-pulmonary exercise test where they ride a bike until they become fatigued. If the test is repeated the following day, ME/CFS patients usually cannot reproduce their performance from the first day..
“That’s very typical and specific of people with ME/CFS, because healthy people, or even people who have heart disease, can reproduce the exercise on the second day, but these people cannot,” Giloteaux said.
In the study, Ithaca campus researchers collaborated with Dr. Susan Levine, an ME/CFS specialist in New York City, who recruited 48 people diagnosed with ME/CFS and 39 healthy controls to provide stool and blood samples.
The researchers sequenced regions of microbial DNA from the stool samples to identify different types of bacteria. Overall, the diversity of types of bacteria was greatly reduced and there were fewer bacterial species known to be anti-inflammatory in ME/CFS patients compared with healthy people, an observation also seen in people with Crohn’s disease and ulcerative colitis.
At the same time, the researchers discovered specific markers of inflammation in the blood, likely due to a leaky gut from intestinal problems that allow bacteria to enter the blood, Giloteaux said.
Bacteria in the blood will trigger an immune response, which could worsen symptoms.
The researchers have no evidence to distinguish whether the altered gut microbiome is a cause or a whether it is a consequence of disease, Giloteaux added.
In the future, the research team will look for evidence of viruses and fungi in the gut, to see whether one of these or an association of these along with bacteria may be causing or contributing to the illness.
Co-authors include Julia Goodrich, a doctoral student, and William Walters, a postdoctoral researcher, both in Ley’s lab.
The study was funded by the National Institutes of Health.
New York Times story, 7 July 2016
Abstract in Microbiome, 23 June 2016
Gut bacteria linked to chronic fatigue’ (full article and link to published study) | The Times | 26 April 2017
From The Times, 26 April 2017. Story by Tim Whipple, Science Editor.
Chronic fatigue syndrome has been linked to changes in the gut’s bacteria in the latest research showing that the condition once derided as “yuppie flu” has real physiological effects.
The scientists involved said that they were hopeful the work could lead to treatments for at least some of those suffering from the condition.
People suffering from CFS, also known as ME, often also have irritable bowel syndrome. In the new study the researchers investigated the link between the two, showing that there were clear gut bacteria changes associated with CFS, a debilitating condition that leaves people extremely tired for much of their lives. Despite affecting an estimated 250,000 people in Britain, its causes and mechanism are poorly understood. Theories have ranged from its being a response to viral infection to its being purely psychiatric. Recent research found a chemical signature that seemed to show metabolic changes similar to hibernation.
In a new study published in the journal Microbiome, researchers showed that the bacteria in the guts of 50 people with CFS were different from those of people without CFS and that this was true whether or not they also had irritable bowel syndrome, a condition that causes digestive problems.
Ian Lipkin from Columbia University said that it was impossible to tell whether the changes were a cause or consequence of the illness but that it was not implausible that the actions of gut bacteria could make people feel more tired.
“It’s something people have been talking about for a while. The idea would be that certain bacteria have an impact on the metabolism. They affect the ability to assimilate nutrients, the energy balance, and cause inflammations which can make you feel ill.”
Many scientists now believe CFS is an umbrella term for several different conditions and Professor Lipkin thinks that even if promoting different bacteria to change the “microbiota” helps some, it will not help everyone. Even so, he said that he hoped to investigate further and anticipated that others would too. “The ME/CFS community is very eager to find solutions. I expect there will be people immediately trying to modify their microbiota. In the end we think all this needs to be done in a full clinical trial but there will be people acting on this.”
People with CFS have been frustrated by the pace of research and even by the characterisation of the disease. Many are angered by NHS advice, based on a major trial, that suggests exercise and cognitive behavioural therapy. They argue that this does not treat it as the physiological condition they believe it is. Some feel stigmatised by a perception that it is not a real condition, hence the yuppie flu label.
Professor Lipkin said that he was aware of the desperation for answers. He said: “We don’t think this could be a panacea. It is a complex disorder. But we do think there are a group of people who may be helped. It is our fervent hope to find real solutions. People become despondent and even suicidal. I want them to realise that we are working on this. Please hang on.”
Yours Sincerely, Paul D. Smith
JES
Senior Member
- Messages
- 1,374
FYI, just in case you were not aware of it, Kenny de Meirleir (often referred to as "KDM" on these forums) has been treating CFS/ME patients for decades with his main theory being that there is small intestine bacterial overgrowth and an imbalanced microbiome in CFS/ME. His main treatment is Rifaximin, which is an antibiotic that is only active in the small intenstine. He also often prescribes other antibiotics and treatments that affect the gut. His success and reputation is, however, mixed. On these forums, there are only a couple of KDM's patients that have reported improvement. Many have gotten worse or seen no change from the antibiotics that he prescribed. The couple of times I tried long-term antibiotics I got worse and my immune system basically shut down. The protocol of KDM as such is not a cure that would be widely applicable for CFS/ME patients. Maybe it works for some, but if it really was curative for the large group, we would know by now.
A diagnosis of Da-La on basis that you respond to a certain antibiotic seems unscientific to me. That you respond to an antibiotic is only proof of that you respond to an antibiotic - there could be hundreds of underlying reasons for why it works. There are many bacteria that we don't even know about today that these antibiotics might kill, and there could be other effects, for example some antibiotics act as anti-inflammatories. Also the fact that you respond to avoiding sugars and carbs is not unusual among this forum members, many have tried ketogenic diets, and again there could be hundreds of downstream effects from this kind of diet that could explain why it works.
I myself think that the bacterial overgrowth is just a consequence, not the cause of CFS/ME, but this is just my theory and I have no way of scientifically proving it. I developed symptoms of SIBO only about five years after getting the first CFS symptoms and I believe it's mostly just a consequence of the immune dysfunction. So IMO these SIBO treatments may help, but are rarely curative. Anyway, I'm glad that you found something that worked and I have no doubts that it helped you, I'm just skeptical about the cause.
A diagnosis of Da-La on basis that you respond to a certain antibiotic seems unscientific to me. That you respond to an antibiotic is only proof of that you respond to an antibiotic - there could be hundreds of underlying reasons for why it works. There are many bacteria that we don't even know about today that these antibiotics might kill, and there could be other effects, for example some antibiotics act as anti-inflammatories. Also the fact that you respond to avoiding sugars and carbs is not unusual among this forum members, many have tried ketogenic diets, and again there could be hundreds of downstream effects from this kind of diet that could explain why it works.
I myself think that the bacterial overgrowth is just a consequence, not the cause of CFS/ME, but this is just my theory and I have no way of scientifically proving it. I developed symptoms of SIBO only about five years after getting the first CFS symptoms and I believe it's mostly just a consequence of the immune dysfunction. So IMO these SIBO treatments may help, but are rarely curative. Anyway, I'm glad that you found something that worked and I have no doubts that it helped you, I'm just skeptical about the cause.
Dear JES,
thank you for you healthy skepticism. I was also very skeptical that Bacterial overgrowth could cause such profound illness and I believe that it may be one of the reasons that it has been grossly underestimated in ME/CFS. I agree that SIBO does not exist without underlying causation although it can be caused in some purely through motility and can exist as a self perpetuating condition caused by Methane producing bacteria affecting motility. I had stated about this in an earlier message. It is undeniably complex!
My only reason for being on the site is to make others aware of the possibility of both Bacterial Overgrowth and D-Lactic acidosis for those suffering Gut and Neurological symptoms similar to mine. I do not expect it to be a one size fits all, but I do suspect, and there is growing evidence that Gut bacteria may be involved for a number of patients suffering ME/CFS. I am not proposing that this is the end of ME/CFS, but may be a beginning in terms of badly needed research for at lease a group of sufferers. I agree that there will be underlying causation for Bacterial Overgrowth and had sent a report earlier listing a number of possible causations. The underlying causation will obviously complicate the picture and anyone with these Gut symptoms needs a full diagnosis and the underlying cause is the most important aspect. Diabetes can also cause SIBO and I suspect insulin resistance. There may be a number of possible contributing factors leading to similar Bacterial Overgrowth problems.
I also had milder symptoms of CFS which I was living with for around five years prior to D-Lactic symptoms and there was a profound change when my symptoms worsened. I was also under a great deal of stress and had some contact with pesticides. What triggers these complex problems, how and why they continue is what needs to be investigated. SIBO alone can cause Fatigue etc. There may be increased Bacterial Overgrowth from other species once initial symptoms occure. Dr. Luke White ('D-La more prevalent than we think' states that anyone with SIBO is at risk of D-Lactic acidosis).
It is possible to have increased Species of Bacteria involved once Bacterial Overgrowth occurs.
I have asked for investigation from a number of organisations including the NHS because I do not believe that I will be alone with these symptoms. No one recognized my symptoms for 18 years and I was treated as though my symptoms were all psychological.
I suspect the overuse use of antibiotics may also be implicated because they can cause dysbiosis through selection and resistance (every time that you treat a chest infection antibiotics also affect Gut Bacteria), but there are undoubtedly many other possible causations. We need to keep an open mind to the possibilities.
This is not a dodgy diagnosis and my response to antibiotics was only the first stage in obtaining a diagnosis. I have been fully diagnosed with D-Lactic acidosis and have a letter to carry in case illness recurs if I fail to maintain the Diet. I was first diagnosed with Bacterial Overgrowth when I noticed that I responded temporarily to antibiotics, but was diagnosed later with D-La which was serious enough to cause me to become confused with slurred speech and breathing difficulty. It took 18 years to understand and to obtain a diagnosis. It is well known that patients can go for decades without diagnosis for Bacterial Overgrowth or D-La.
There is a great deal of growing evidence that Gut Bacteria are involved and certainly in IBS and D-La, and this should not be hastily dismissed!
Paul.
thank you for you healthy skepticism. I was also very skeptical that Bacterial overgrowth could cause such profound illness and I believe that it may be one of the reasons that it has been grossly underestimated in ME/CFS. I agree that SIBO does not exist without underlying causation although it can be caused in some purely through motility and can exist as a self perpetuating condition caused by Methane producing bacteria affecting motility. I had stated about this in an earlier message. It is undeniably complex!
My only reason for being on the site is to make others aware of the possibility of both Bacterial Overgrowth and D-Lactic acidosis for those suffering Gut and Neurological symptoms similar to mine. I do not expect it to be a one size fits all, but I do suspect, and there is growing evidence that Gut bacteria may be involved for a number of patients suffering ME/CFS. I am not proposing that this is the end of ME/CFS, but may be a beginning in terms of badly needed research for at lease a group of sufferers. I agree that there will be underlying causation for Bacterial Overgrowth and had sent a report earlier listing a number of possible causations. The underlying causation will obviously complicate the picture and anyone with these Gut symptoms needs a full diagnosis and the underlying cause is the most important aspect. Diabetes can also cause SIBO and I suspect insulin resistance. There may be a number of possible contributing factors leading to similar Bacterial Overgrowth problems.
I also had milder symptoms of CFS which I was living with for around five years prior to D-Lactic symptoms and there was a profound change when my symptoms worsened. I was also under a great deal of stress and had some contact with pesticides. What triggers these complex problems, how and why they continue is what needs to be investigated. SIBO alone can cause Fatigue etc. There may be increased Bacterial Overgrowth from other species once initial symptoms occure. Dr. Luke White ('D-La more prevalent than we think' states that anyone with SIBO is at risk of D-Lactic acidosis).
It is possible to have increased Species of Bacteria involved once Bacterial Overgrowth occurs.
I have asked for investigation from a number of organisations including the NHS because I do not believe that I will be alone with these symptoms. No one recognized my symptoms for 18 years and I was treated as though my symptoms were all psychological.
I suspect the overuse use of antibiotics may also be implicated because they can cause dysbiosis through selection and resistance (every time that you treat a chest infection antibiotics also affect Gut Bacteria), but there are undoubtedly many other possible causations. We need to keep an open mind to the possibilities.
This is not a dodgy diagnosis and my response to antibiotics was only the first stage in obtaining a diagnosis. I have been fully diagnosed with D-Lactic acidosis and have a letter to carry in case illness recurs if I fail to maintain the Diet. I was first diagnosed with Bacterial Overgrowth when I noticed that I responded temporarily to antibiotics, but was diagnosed later with D-La which was serious enough to cause me to become confused with slurred speech and breathing difficulty. It took 18 years to understand and to obtain a diagnosis. It is well known that patients can go for decades without diagnosis for Bacterial Overgrowth or D-La.
There is a great deal of growing evidence that Gut Bacteria are involved and certainly in IBS and D-La, and this should not be hastily dismissed!
Paul.
I have been tested for D-lactic acidose by KDM and was negative. I don't have high streptococcus and enterococcus. I do have an overgrowth of different bacteria.
I agree with the things you say, but I don't think we can dismiss the theory just because the treatment is not that simple and does't work (yet) for everyone. If you ask KDM, he will tell you that the problem is not only SIBO in CFS patients, but also the leaky gut problem and the systemic problems in the immune system. Where some people might get better by only treating the overgrowth, other people might need treatment of all three components to get better.
I totally agree with Avenger that there should be a lot more research in this area. Maybe it will not help everyone or every symptom, but I think with quick diagnosis and treatment of people early on, we might be able to prevent a group of people form getting worse. I know from the studies for Maes into leaky gut and overgrowth, that they can help a subgroup of about 50% and those are especially the people that are young and haven't been ill for very long.
In the Netherlands SIBO is hardly even recognized as a problem (in the regular health system). That should really change.
I was offered Rifaximin for Bacterial Ovegrowth and although I did not find it very successful, it has worked for a high percentage with SIBO and is known not to be both effective and safe ( Rifaximin Meta-analysis below). I have since found better antibiotics for recurrence of symptoms and Metronidazole is also known to be fast acting in D-La. I had become unresponsive to a number of antibiotics at the point that I was diagnosed with D-La, that it why I was given the exclusion diet which can work just as well as antibiotics and is used as an alternative.
All Bacterial Overgrowth produce unwanted metabolites (D-La is only one form of Metabolite) and needs to be controlled. There are unknown affects upon Gut Bacteria from Antibiotics and Metronidazole is also known to suppress the immune system but is widely used for infections. It is better to use an Exclusion Diet alone if your symptoms can be controlled by not feeding the Bacteria rather than using Antibiotics.
I have mixed feeling about using Antibiotics but have been forced to when I have failed to maintain my diet which has happened for a number of reasons. But if symptoms cannot be controlled and are severe then antibiotics have to be used. Overuse of Antibiotics could paradoxically be implicated in Bacterial Overgrowth and this is why we need urgent research. It feels like trying to crack a walnut with a sledgehammer, but if you only have a sledgehammer.....
You can reduce the Bacteria using antibiotics to destroy them or starve them and not to supply what is being converted to D-Lactic acid or other Metabolites produced by Bacterial Overgrowth. Dr. Myhill also uses dietary means to control SIBO symptoms but also uses antibacterials such as Neem (Some Gastroenterologists will also used antibacterials with antibiotics to eradicate Helico-Bacter which is another Bacteria affecting the Stomach and Duodenum).
I feel sorry for those in the Netherlands, because SIBO alone can clearly cause a number of problems including fatigue and muscle pain and Leaky Gut comes with SIBO due to damage from Bacterial Overgrowth and Metabolites produced on the Mucosal Lining causing Immune Dysfuntion due to Bacteria/Metabolites crossing the Mucosal barrier and activating an immune response (but there are drugs such as NSAID's which will also cause similar Mucosal damage).
Perhaps someone should start with a survey of as many ME/CFS as possible to find out what drugs, antibiotics and problems sufferers had before falling ill. What treatments have been tried and with what success. Whether all or only some ME/CFS have some form of Gastrointestinal problems or SIBO and what they can remember may be significant prior to falling ill eg. Pesticide Contact or Infections. Whether anyone has had treatment for Helico-Bacter such as Omeprazole or Antibiotics, whether they used NSAID analgesics. Acid lowering drugs such as Omeprazole are contraindicated for SIBO because they lower acidity at the gateway to the Gastrointesinal System allowing increased Bacteria access. Did symptoms start with Blood Sugar problems or other illness such as Diabetes? I think that this is going to be incredibly complex and there may be a number of subtypes. But a wide statistical analysis might provide some insight. We must hold the key.
I was given NSAIDs for a number of years before falling unwell (Non Steroidal Anti-Inflammatorie's) which also cause damage to the Mucosal Lining. Leaky Gut could possibly then result in a chain of problems that feed back in a negative chain of events. I also had Helico-Bacter and used frequent Proton Pump Inhibitors and also Zantac and a number of Antibiotics over a period of years.
Professor Hooper had some tests performed for me on two occasions confirming high IAG believed resulting from Leaky Gut. I was also diagnosed with Immune Dysfunction, Hypogammaglobulinaemia IgM.
But if anyone has the symptoms of SIBO, it needs to be controlled and underlying causation identified as a starting point.
If a number of Bacteria are implicated in different forms of Bacterial Overgrowth then there may be a number of Metabolites involved in different combinations (Sheedy et al have stated in 2017 that it is not only the production of D-Lactic acid, but other metabolites may be involved in D-La.). How many forms of combination of Overgrowth are there and what toxic affects?
I have so many unanswered questions and have to admit that I am fascinated, still experimenting and hoping to find a cure, not just treatment.
Systematic review with meta‐analysis: rifaximin is effective and safe for the treatment of small intestine bacterial overgrowth
L. Gatta
1 , 2 and C. Scarpignato 1
L. Gatta, Email: moc.liamg@glattag.
R.W. McCallum, L. Lombardo, M. Pimentel, R. D'Incà, A. Gasbarrini, A. De Stefano, and E. Cerda
1Clinical Pharmacology and Digestive Pathophysiology Unit, Department of Clinical and Experimental Medicine, University of Parma, Parma, Italy
2Gastroenterology and Endoscopy Unit, Versilia Hospital, Azienda USL Toscana Nord‐Ovest, Lido di Camaiore, Italy
Author information ► Article notes ► Copyright and License information ►
This article has been cited by other articles in PMC.
Go to:
Summary
Background
Small intestinal bacterial overgrowth (SIBO) is a heterogeneous syndrome, characterised by an increased number and/or abnormal type of bacteria in the small bowel. Over the past decades, rifaximin has gained popularity for this indication despite its use is not evidence based.
Aim
To perform a systematic review and meta‐analysis to summarise evidence about the efficacy and safety of rifaximin to eradicate SIBO in adult patients.
Methods
MEDLINE, EMBASE, CCRCT, Scopus and Web of Science were searched from inception to March 16, 2015 for RCTs and observational studies. Furthermore, abstract books of major European, American and Asian gastroenterological meetings were also examined.
Results
Thirty‐two studies involving 1331 patients were included. The overall eradication rate according to intention‐to‐treat analysis was 70.8% (95% CI: 61.4–78.2; I 2 = 89.4%) and to per protocol analysis 72.9% (95% CI: 65.5–79.8; I 2 = 87.5%). Meta‐regression identified three covariates (drug dose, study design and co‐therapy) independently associated with an increased eradication rate. The overall rate of adverse events was 4.6% (95% CI: 2.3–7.5; I 2 = 63.6%). In the subset of studies (n= 10) allowing the analysis, improvement or resolution of symptoms in patients with eradicated SIBO was found to be 67.7% (95% CI: 44.7–86.9; I 2 = 91.3%).
Conclusions
Rifaximin treatment seems to be effective and safe for the treatment of SIBO. However, the quality of the available studies is generally poor. Well‐designed RCTs are needed to substantiate these findings and to establish the optimal regimen.
Go to:
Introduction
Small intestinal bacterial overgrowth (SIBO) is a heterogeneous syndrome characterised by an increased number and/or abnormal type of bacteria in the small bowel, and it is a well‐recognised cause of maldigestion and malabsorption.1, 2
The recent discovery of an association between SIBO and functional gut symptoms, albeit controversial, has renewed interest in this mimicry. SIBO represents indeed an umbrella term, under which some different functional (e.g. irritable bowel syndrome, chronic constipation, diarrhoea) or organic (e.g. inflammatory bowel disease, coeliac disease, diverticular disease, etc.) conditions can be included, as – in each of them – bacterial proliferation (and consequent inflammation) may, at least in part, trigger similar abdominal symptoms.1
The overall, true prevalence of SIBO – which is usually under‐diagnosed – is unknown.2, 3Indeed, patients may not seek healthcare and SIBO may not be properly diagnosed by medical investigations. In addition, the diagnostic yield depends on the methodology adopted, so that results from different studies are difficult to compare.4, 5
The mainstay of the SIBO treatment is based on the use of antimicrobial agents, whose aims should not be to eradicate the entire bacterial flora but rather to modify the intestinal microecology in order to get symptoms relief.1 Ideally, the choice of antimicrobials should reflect in vitro susceptibility testing, but this is usually impractical because intestinal bacterial cultures need invasive methodology to collect samples under sterile conditions.6 Therefore, hydrogen breath test (HBT) is widely used as non‐invasive means to diagnose SIBO. As consequence, in clinical practice antibiotic treatment, which should cover both aerobic and anaerobic bacteria, remains primarily empiric.4, 5, 6
Several antibiotic regimens proved to be effective over the past 50 years, with treatment success ranging from 27% to 100%.7 Till the end of 90s, only systemic antimicrobials were used, whose adverse events (AEs) and detrimental effects on gut microbiota are today well known.8Poorly absorbed antibiotics, unlike systemic ones, allow localised targeting of enteric pathogens and are associated with minimal risk of systemic toxicity or AEs. The restricted use of drugs only for enteric‐infections should also reduce the development of widespread resistance, especially of enterobacteria, a major limitation of current antibiotics.8
Rifaximin is a product of synthesis experiments designed to modify the parent compound, rifamycin, in order to achieve low gastrointestinal absorption while retaining good antibacterial activity.9, 10, 11 Both experimental and clinical pharmacology have clearly shown that this compound is a poorly absorbed antibiotic with a broad spectrum of antibacterial activity, covering Gram‐positive and Gram‐negative microorganism, both aerobes and anaerobes.10, 11, 12, 13
Rifaximin fulfils all the characteristics set by DuPont and Ericsson14 for the ideal antimicrobial that should be used for the treatment of gastrointestinal infections (including dysbiosis and SIBO). As a consequence, over the past decades, rifaximin has been largely used to treat SIBO1, 7 even if there is currently a lack of a critical summary of evidence. To bridge this gap, a systematic review and meta‐analysis of randomised and nonrandomised studies was performed to evaluate the clinical effectiveness of and safety rifaximin to eradicate SIBO in adult patients.
Go to:
Methods
Paul.
All Bacterial Overgrowth produce unwanted metabolites (D-La is only one form of Metabolite) and needs to be controlled. There are unknown affects upon Gut Bacteria from Antibiotics and Metronidazole is also known to suppress the immune system but is widely used for infections. It is better to use an Exclusion Diet alone if your symptoms can be controlled by not feeding the Bacteria rather than using Antibiotics.
I have mixed feeling about using Antibiotics but have been forced to when I have failed to maintain my diet which has happened for a number of reasons. But if symptoms cannot be controlled and are severe then antibiotics have to be used. Overuse of Antibiotics could paradoxically be implicated in Bacterial Overgrowth and this is why we need urgent research. It feels like trying to crack a walnut with a sledgehammer, but if you only have a sledgehammer.....
You can reduce the Bacteria using antibiotics to destroy them or starve them and not to supply what is being converted to D-Lactic acid or other Metabolites produced by Bacterial Overgrowth. Dr. Myhill also uses dietary means to control SIBO symptoms but also uses antibacterials such as Neem (Some Gastroenterologists will also used antibacterials with antibiotics to eradicate Helico-Bacter which is another Bacteria affecting the Stomach and Duodenum).
I feel sorry for those in the Netherlands, because SIBO alone can clearly cause a number of problems including fatigue and muscle pain and Leaky Gut comes with SIBO due to damage from Bacterial Overgrowth and Metabolites produced on the Mucosal Lining causing Immune Dysfuntion due to Bacteria/Metabolites crossing the Mucosal barrier and activating an immune response (but there are drugs such as NSAID's which will also cause similar Mucosal damage).
Perhaps someone should start with a survey of as many ME/CFS as possible to find out what drugs, antibiotics and problems sufferers had before falling ill. What treatments have been tried and with what success. Whether all or only some ME/CFS have some form of Gastrointestinal problems or SIBO and what they can remember may be significant prior to falling ill eg. Pesticide Contact or Infections. Whether anyone has had treatment for Helico-Bacter such as Omeprazole or Antibiotics, whether they used NSAID analgesics. Acid lowering drugs such as Omeprazole are contraindicated for SIBO because they lower acidity at the gateway to the Gastrointesinal System allowing increased Bacteria access. Did symptoms start with Blood Sugar problems or other illness such as Diabetes? I think that this is going to be incredibly complex and there may be a number of subtypes. But a wide statistical analysis might provide some insight. We must hold the key.
I was given NSAIDs for a number of years before falling unwell (Non Steroidal Anti-Inflammatorie's) which also cause damage to the Mucosal Lining. Leaky Gut could possibly then result in a chain of problems that feed back in a negative chain of events. I also had Helico-Bacter and used frequent Proton Pump Inhibitors and also Zantac and a number of Antibiotics over a period of years.
Professor Hooper had some tests performed for me on two occasions confirming high IAG believed resulting from Leaky Gut. I was also diagnosed with Immune Dysfunction, Hypogammaglobulinaemia IgM.
But if anyone has the symptoms of SIBO, it needs to be controlled and underlying causation identified as a starting point.
If a number of Bacteria are implicated in different forms of Bacterial Overgrowth then there may be a number of Metabolites involved in different combinations (Sheedy et al have stated in 2017 that it is not only the production of D-Lactic acid, but other metabolites may be involved in D-La.). How many forms of combination of Overgrowth are there and what toxic affects?
I have so many unanswered questions and have to admit that I am fascinated, still experimenting and hoping to find a cure, not just treatment.
Systematic review with meta‐analysis: rifaximin is effective and safe for the treatment of small intestine bacterial overgrowth
L. Gatta
L. Gatta, Email: moc.liamg@glattag.
R.W. McCallum, L. Lombardo, M. Pimentel, R. D'Incà, A. Gasbarrini, A. De Stefano, and E. Cerda
1Clinical Pharmacology and Digestive Pathophysiology Unit, Department of Clinical and Experimental Medicine, University of Parma, Parma, Italy
2Gastroenterology and Endoscopy Unit, Versilia Hospital, Azienda USL Toscana Nord‐Ovest, Lido di Camaiore, Italy
Author information ► Article notes ► Copyright and License information ►
This article has been cited by other articles in PMC.
Go to:
Summary
Background
Small intestinal bacterial overgrowth (SIBO) is a heterogeneous syndrome, characterised by an increased number and/or abnormal type of bacteria in the small bowel. Over the past decades, rifaximin has gained popularity for this indication despite its use is not evidence based.
Aim
To perform a systematic review and meta‐analysis to summarise evidence about the efficacy and safety of rifaximin to eradicate SIBO in adult patients.
Methods
MEDLINE, EMBASE, CCRCT, Scopus and Web of Science were searched from inception to March 16, 2015 for RCTs and observational studies. Furthermore, abstract books of major European, American and Asian gastroenterological meetings were also examined.
Results
Thirty‐two studies involving 1331 patients were included. The overall eradication rate according to intention‐to‐treat analysis was 70.8% (95% CI: 61.4–78.2; I 2 = 89.4%) and to per protocol analysis 72.9% (95% CI: 65.5–79.8; I 2 = 87.5%). Meta‐regression identified three covariates (drug dose, study design and co‐therapy) independently associated with an increased eradication rate. The overall rate of adverse events was 4.6% (95% CI: 2.3–7.5; I 2 = 63.6%). In the subset of studies (n= 10) allowing the analysis, improvement or resolution of symptoms in patients with eradicated SIBO was found to be 67.7% (95% CI: 44.7–86.9; I 2 = 91.3%).
Conclusions
Rifaximin treatment seems to be effective and safe for the treatment of SIBO. However, the quality of the available studies is generally poor. Well‐designed RCTs are needed to substantiate these findings and to establish the optimal regimen.
Go to:
Introduction
Small intestinal bacterial overgrowth (SIBO) is a heterogeneous syndrome characterised by an increased number and/or abnormal type of bacteria in the small bowel, and it is a well‐recognised cause of maldigestion and malabsorption.1, 2
The recent discovery of an association between SIBO and functional gut symptoms, albeit controversial, has renewed interest in this mimicry. SIBO represents indeed an umbrella term, under which some different functional (e.g. irritable bowel syndrome, chronic constipation, diarrhoea) or organic (e.g. inflammatory bowel disease, coeliac disease, diverticular disease, etc.) conditions can be included, as – in each of them – bacterial proliferation (and consequent inflammation) may, at least in part, trigger similar abdominal symptoms.1
The overall, true prevalence of SIBO – which is usually under‐diagnosed – is unknown.2, 3Indeed, patients may not seek healthcare and SIBO may not be properly diagnosed by medical investigations. In addition, the diagnostic yield depends on the methodology adopted, so that results from different studies are difficult to compare.4, 5
The mainstay of the SIBO treatment is based on the use of antimicrobial agents, whose aims should not be to eradicate the entire bacterial flora but rather to modify the intestinal microecology in order to get symptoms relief.1 Ideally, the choice of antimicrobials should reflect in vitro susceptibility testing, but this is usually impractical because intestinal bacterial cultures need invasive methodology to collect samples under sterile conditions.6 Therefore, hydrogen breath test (HBT) is widely used as non‐invasive means to diagnose SIBO. As consequence, in clinical practice antibiotic treatment, which should cover both aerobic and anaerobic bacteria, remains primarily empiric.4, 5, 6
Several antibiotic regimens proved to be effective over the past 50 years, with treatment success ranging from 27% to 100%.7 Till the end of 90s, only systemic antimicrobials were used, whose adverse events (AEs) and detrimental effects on gut microbiota are today well known.8Poorly absorbed antibiotics, unlike systemic ones, allow localised targeting of enteric pathogens and are associated with minimal risk of systemic toxicity or AEs. The restricted use of drugs only for enteric‐infections should also reduce the development of widespread resistance, especially of enterobacteria, a major limitation of current antibiotics.8
Rifaximin is a product of synthesis experiments designed to modify the parent compound, rifamycin, in order to achieve low gastrointestinal absorption while retaining good antibacterial activity.9, 10, 11 Both experimental and clinical pharmacology have clearly shown that this compound is a poorly absorbed antibiotic with a broad spectrum of antibacterial activity, covering Gram‐positive and Gram‐negative microorganism, both aerobes and anaerobes.10, 11, 12, 13
Rifaximin fulfils all the characteristics set by DuPont and Ericsson14 for the ideal antimicrobial that should be used for the treatment of gastrointestinal infections (including dysbiosis and SIBO). As a consequence, over the past decades, rifaximin has been largely used to treat SIBO1, 7 even if there is currently a lack of a critical summary of evidence. To bridge this gap, a systematic review and meta‐analysis of randomised and nonrandomised studies was performed to evaluate the clinical effectiveness of and safety rifaximin to eradicate SIBO in adult patients.
Go to:
Methods
Paul.
Hi, I don't think that I properly answered your inquiry. We have had a family crisis which has made it difficult.
I do still have some problems, but the worst symptoms are now controllable within 64 hours if I fail the diet or with combined antibiotics to reduce symptoms quickly (as on holiday recently when I found it difficult to find the correct food and when I was too unwell to go out due to Flu symptoms). 4-6 Weeks is to properly trial the Diet and it is more important to be very strict during this period (after consulting your Doctor).
The worst Bacterial Overgrowth symptoms causing Hypoglycemia and Postprandial Hypoglycemia, Abdominal Pain, Stomach Emptying problems, Bloating, Reflux, Flushing, Dizziness and Drowsiness after meal all stopped after using the Diet, but return quickly if I return to Carbs even for a meal. I had returning symptoms (not D-Lactic but Overgrowth symptoms) after going for a meal and deciding that I would allow myself an evening off. Two pints of Lager and Carbohydrate meal was fine until I returned home and it was like being hit by a shovel and passed into an abnormal and disturbing sleep and woke aching and drowsy.
I had frequent Hypoglycemia which has been reported by many ME/CFS, which the Gastroenterologist told me was due to the Overgrowth competing for my food in my small intestine. I had dreadful hypoglycemia symptoms at times, but they have now cease altogether since stopping Carbs and Sugars. The Hypoglycemia was never taken seriously by Doctors because of the number of symptoms caused by D-La (causing them to believe were not possible) but was taken seriously as a symptom by the Gastroenterologist who diagnosed Bacterial Overgrowth.
D-Lactic symptoms do not seem to recur for a few days if I fail the Diet, and just as you believe that your symptoms are all over or a figment of your imagination, return to cause severe illness if normal levels of Carbs and Sugars have been used. I am getting more used to the Diet and even finding that my former cravings for Carbs and Sweets/Chocolate now seem to now have gone and wonder if the problems induced my craving for Carbs and Sugars.
I also lost weight and returned to a normal weight for my height (I was using high Carbs because I had no energy before diagnosis and my weight had increased. I was very athletic before falling ill and soon put on weight). Finding ways to make the Diet limitation more presentable is the answer and I am finding many substitutes for the things that I miss. I now have Greek Yogurt instead of Chocolate!
Motility problems have not changed and is still a problem but I am also using analgesics due to still having shoulder tears and a collapsed disc that had been dismissed as 'Chronic Fatigue' for over 18 years and I now need to have bone anchors for shoulder tears that were severe, and spinal fusion for my lower back. No one would take my symptoms seriously until I was diagnosed with D-La and I now have accrued injuries.
I undoubtedly still have underlying issues (I was diagnosed with autonomic dysfunction which may be a symptom or cause, Chicken or Egg?) But the worst symptoms recur quickly once I return to Carbohydrates and I still have some Fatigue issues/post activity, although but I have been ill for 18 years and expect that the delay in diagnosis will have caused a number of problems because D-La affects every organ and I have suffered long term poisoning. But I am no longer expecting to die from an undiagnosed illness and I am grateful for another chance to live out the rest of my life.
Paul.
knackers323
Senior Member
- Messages
- 1,625
@Avenger have you tried an elemental diet?
Thanks for sharing your story, Avenger. I recently tested positive for an overgrowth of d-lactate (in particular, L. acidophilus) and have always had gut issues, so I've followed this thread with a great deal of interest. Is there a specific book or website that guided you on the proper diet to combat d-lactic acidosis? Does zero sugar mean zero fruit? Does low carb mean limiting veg? There is a dizzying amount of info out there on paleo, keto, PK diets, etc., and I have trouble reading for any length of time, so it would be great to just get a list of Do's and Don'ts from somewhere.
Dar
Dar
Hi, I wonder how many of us have D-La or different forms of Bacterial Overgrowth?
Did you have neurological symptoms? were you very unwell like myself? I had been expecting to die from the illness or have to suicide. I know that many ME/CFS have experienced similar neurological symptoms.
You will need a good Gastro and Dietitian for D-La, but Dr. Sarah Myhill is very good with diet and will also look into your specific needs holistically although her information is free online if you visit her website. But it is better to get full advice from a Doctor or Consultant who really understands D-La/Bacterial Overgrowth because treatment is similar for most forms. Many Doctors will not have a clue and you may need to find a Consultant Gastroenterologist specializing in D-La.
I am getting better and better, it was hard at first and with many setbacks, some of which were due to giving up craved Carb and Sugar foods. It takes a while to adapt and you may have a number of recurrences partly due to failure to maintain the diet and also willpower. It is a bit like giving up smoking. But I no longer have such cravings and enjoy my diet and am able to make much more of the 'limitation' which is really no more than a very healthy diet. I can also still enjoy alcohol without sugars and carbs once more.
You can still enjoy fruit although it is still a simple sugar, you will have to reduce fruit portions and use low sugar fruits. It is not all veg, but all meats, fish eggs and yogurt and creative combinations of foods available with vegetables that are low to 0 in carbs.
You will have to experiment for yourself, but you will need to start with a low to 0% Carb/sugar diet. 0% is best and then you can find out what you can tolerate. If you fail you have to look at what you ate up to a few days prior. It can take 64 hours on absolute 0% to stop symptoms and you may need antibiotics if you become very unwell.
There are many ME/CFS who have serious illness. D-La even affects your heart. It is systemic poisoning with fluctuating levels affecting almost everything. It can be mild or severe and even fatal (seizure, coma and death).
I have no doubt that other forms of Bacterial Overgrowth can also make you very unwell (this is not just about D-La because any Bacterial Overgrowth can cause similar unwanted metabolites/toxins) and other forms of illness due to reaction to those metabolites. Autonomic and Immune Dysfunction.....
Anyone with Gut issues should ask for tests for Bacterial Overgrowth or Helicobacter, and ask for the cause of any Gut pain or discomfort, bloating, burping, sickness etc. to be fully investigated especially with more serious illness. It was not so long ago that IBS was deemed a psychological problem. If neurological symptoms, then should request investigations for D-La if there is no other cause found for neurological symptoms.
Paul.
Wayne
Senior Member
- Messages
- 4,485
- Location
- Ashland, Oregon
Hi Paul,
Thanks much for posting extensively on what appears to be a most important topic. I've been in a bit of a crisis mode since the beginning of February, and didn't see this thread until today.
I had a serious head injury/whiplash when I was a teenager, resulting in my cranial nerves becoming "crimped". My crimped vagus nerve (primarily responsible for gut motility) eventually led to me developing slow motility and accompanying gastroporesis. -- BTW, stimulating the vagus nerve can improve gut motility.
So it appears I would be a prime candidate for developing D-Lactic Acidosis. I do know that I've done better the past 1-2 years eating a primarily higher fat/lower carbohydrate diet. I'll be experimenting with some of your information and suggestions to see what more I can learn from a specialized diet to counter D-La.
This thread reminded me of a somewhat humorous (but insightful) experience my brother had a number of years ago. He has relatively mild CFS, and had been having a bit of a problem with his GI tract the prior 1-2 years. He could very easily get loose bowels or diarrhea, no matter how carefully he ate and took care of himself. One day he was at a local health food store and they recommended he try their most potent probiotic. It was a 7-day supply of a refrigerated product called "Ultimate Flora Critical Care 50 Billion".
Well, he took it, and it quickly cleared up his GI distress. What followed was as interesting as his own health improvement. It also improved the health of the septic system next to his house. He lives in a rural area in Arkansas and has his own septic system. Every couple weeks or so, he could begin to "detect" that his system needed some maintenance, and would add some kind of septic system enzymes or bacteria.
After fixing his own GI tract, he did not "detect" in the following many months any need for ongoing maintenance of the house septic system. His experience sure made me think about how beneficial it would be to have our own GI system well stocked with the necessary bacteria that are needed to keep it running properly. Doing so would seem to have some far ranging consequences.
Thanks again Paul, for all your contributions on this thread and on this forum. I commend you for your diligence in getting the word out on your discoveries, which may prove to be vitally important for many of us with ME/CFS.
Best, Wayne
Thanks much for posting extensively on what appears to be a most important topic. I've been in a bit of a crisis mode since the beginning of February, and didn't see this thread until today.
I had a serious head injury/whiplash when I was a teenager, resulting in my cranial nerves becoming "crimped". My crimped vagus nerve (primarily responsible for gut motility) eventually led to me developing slow motility and accompanying gastroporesis. -- BTW, stimulating the vagus nerve can improve gut motility.
So it appears I would be a prime candidate for developing D-Lactic Acidosis. I do know that I've done better the past 1-2 years eating a primarily higher fat/lower carbohydrate diet. I'll be experimenting with some of your information and suggestions to see what more I can learn from a specialized diet to counter D-La.
This thread reminded me of a somewhat humorous (but insightful) experience my brother had a number of years ago. He has relatively mild CFS, and had been having a bit of a problem with his GI tract the prior 1-2 years. He could very easily get loose bowels or diarrhea, no matter how carefully he ate and took care of himself. One day he was at a local health food store and they recommended he try their most potent probiotic. It was a 7-day supply of a refrigerated product called "Ultimate Flora Critical Care 50 Billion".
Well, he took it, and it quickly cleared up his GI distress. What followed was as interesting as his own health improvement. It also improved the health of the septic system next to his house. He lives in a rural area in Arkansas and has his own septic system. Every couple weeks or so, he could begin to "detect" that his system needed some maintenance, and would add some kind of septic system enzymes or bacteria.
After fixing his own GI tract, he did not "detect" in the following many months any need for ongoing maintenance of the house septic system. His experience sure made me think about how beneficial it would be to have our own GI system well stocked with the necessary bacteria that are needed to keep it running properly. Doing so would seem to have some far ranging consequences.
Thanks again Paul, for all your contributions on this thread and on this forum. I commend you for your diligence in getting the word out on your discoveries, which may prove to be vitally important for many of us with ME/CFS.
Best, Wayne
Last edited:
Mel9
Senior Member
- Messages
- 995
- Location
- NSW Australia
Sorry if this has already been covered (I haven't been able to read all posts)
Could D-la affect PEM?
Could D-la affect PEM?
Hi, I had varying Post Exertional Malaise. I had extremes at times, sometimes with breathing difficulty and muscle weakness and was expecting to die on a number of occasions when I had overdone things with acidosis. I had periods when I was bed bound for different reasons. I was sometimes dizzy and unwell without having done anything. When symptoms were extreme I became confused and even had a seizure in A&E (although they performed no investigations).
Delay in Fatigue and symptoms after activity were the most worrying because I could not tell how bad the fatigue or illness would be. Sometime I thought that i had got away with things only to be very unwell later or during the night. Before falling ill I had done many years of Fitness training and had never felt anything like this except when i had Flu or had an infection and i was always able to recover from the most grueling activity.
Even when not ill (symptoms fluctuated and I could be 'normal' for short periods), I found that if I overdid things I would become abnormally exhausted. I kept a diary and frequently described fatigue like having climbed a mountain without oxygen. There was often a delay before onset of fatigue and symptoms. Sometimes hours later or even the next day, but not only fatigue but illness would start when i had really pushed things. My whole body was affected. On some occasions there was no delay and i would become ill very quickly, but i had frequent periods of Hypoglycemia also (diagnosed as caused by Bacterial Overgrowth) which has also stopped with the exclusion diet as have all Gut symptoms.
The most worrying thing was the delay after activity because i could never tell how bad fatigue or illness would be. I started taking Propranalol due to heart arrhythms that would occur after activity and could have chest pain. I often developed fast irregular beats that I found could be controlled with Propranolol. I took a lot of risks and would push myself even when unwell because I had been told that all investigations were normal, so I must be normal.
Because I was told that this was all psychological by Doctors, I believed what i was told at first and could become very unwell. I would often start activity again as soon as I had recovered only to fall unwell again. I noticed that each time i tried activity again after recovering, the sooner symptoms would occur and on many occasions could not recover for days to weeks. I would also feel unwell and had both muscle pain and Flu like symptoms. I eventually made a breakthrough when I noticed that all of my symptoms stopped temporarily when I used Metronidazole antibiotics.
Illness often felt like Flu to start with but would feel like infection or having been poisoned as symptoms and fatigue worsened. Everything was affected even my eyesight which would become blurred, I could have tachyarrhythms and would feel abnormal pin prick sensations when my symptoms were at worst.
D-Lactic acidosis and other forms of Bacterial Overgrowth are associated with underlying pathology, so there may still be underlying problems. I still suffer fatigue (although not to the same level), but I have been ill for 18 years. The worst symptoms are now under control through diet, but symptoms will return if i fail to maintain the exclusion diet.
Paul