ME/CFS for 18 years, recently diagnosed with D-Lactic acidosis as cause of symptoms and illness.
- Thread starter Avenger
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Hi, just realized that PEM stands for Post Exertional Malaise. Yes have just covered that before seeing your message.
I definitely have suffered PEM. I have never been good at resting and would push myself even when unwell and PEM could be quite scary because I often became unwell as well as having abnormal fatigue. If I had badly overdone things i could be very unwell and would develop tachyarrhythmias sometimes with chest pain and Flu like symptoms.
There would often be no sign of fatigue or problems for some hours or on occasion even the next day! My symptoms after activity often felt like flying a plane through a storm and symptoms caused by activity would only abate some time the next day but return even more quickly if even mild activity was attempted. Repeating activity could put me in bed for days or even weeks when the symptoms and Flu like aching would not abate.
At times I was very unwell without any activity.
Paul
I forgot to mention that Mitochondrial Dysfunction is related to D-Lactic acidosis (see Sheedy et al. Conclusion Statement 2009 and Dr.Sarah Myhill 'ME/CFS is Mitochondrial Failure').
D-Lactic acidosis causes Mitochondrial Dysfunction and would explain PEM.
Dr. Sarah Myhill can test for Mitochondrial Function. She ran tests for me showing abnormal ATP/ADP conversion and abnormal levels for Mitochondrial Function. She has a web page concerning Mitochondrial Dysfunction/PEM which she believes to be the main cause of fatigue in ME/CFS.
Although she is no longer taking on patients she has put much of her findings and recommendations online, which is a truly altruistic action.
Dr. Myhill has also been treating ME/CFS for Bacterial Overgrowth. She is one of the most intelligent Doctors that I have ever known and has been badly maligned by Doctors who prefer that we are treated as having psychological problems or are Somatizing (there is a conspiracy theory that Wessely or associates have been behind the attack made on Dr. Myhill by the BMA as bad science). I believe that her thinking is light years ahead of mainstream NHS/Doctors who are unable to fully comprehend the importance of her work, which shows their understanding of ME/CFS as bad science.
Knighthoods should be snatched back from the undeserving Psychiatrist who has made his reputation on the backs of those who are too unwell to fight and given to those who have served us, some without recompense and at risk to their careers and often against great opposition from the bad science of Psychiatrists who will bring themselves into disrepute. Dr. Myhill, Professor Malcolm Hooper, Gill Belch and many others. Perhaps we should start awards to these Doctors in recognition of their service to us. (pardon my deviation).
Paul.
D-Lactic acidosis causes Mitochondrial Dysfunction and would explain PEM.
Dr. Sarah Myhill can test for Mitochondrial Function. She ran tests for me showing abnormal ATP/ADP conversion and abnormal levels for Mitochondrial Function. She has a web page concerning Mitochondrial Dysfunction/PEM which she believes to be the main cause of fatigue in ME/CFS.
Although she is no longer taking on patients she has put much of her findings and recommendations online, which is a truly altruistic action.
Dr. Myhill has also been treating ME/CFS for Bacterial Overgrowth. She is one of the most intelligent Doctors that I have ever known and has been badly maligned by Doctors who prefer that we are treated as having psychological problems or are Somatizing (there is a conspiracy theory that Wessely or associates have been behind the attack made on Dr. Myhill by the BMA as bad science). I believe that her thinking is light years ahead of mainstream NHS/Doctors who are unable to fully comprehend the importance of her work, which shows their understanding of ME/CFS as bad science.
Knighthoods should be snatched back from the undeserving Psychiatrist who has made his reputation on the backs of those who are too unwell to fight and given to those who have served us, some without recompense and at risk to their careers and often against great opposition from the bad science of Psychiatrists who will bring themselves into disrepute. Dr. Myhill, Professor Malcolm Hooper, Gill Belch and many others. Perhaps we should start awards to these Doctors in recognition of their service to us. (pardon my deviation).
Paul.
I wrote earlier that D-Lactic acidosis is related to and can cause Mitochondrial Dysfunction, but it is likely to be more complicated, because there are a number of underlying problems that can cause Bacterial Overgrowth and D-La, which may be different for individuals.
Both D-La/Bacterial Overgrowth and Mitochondrial Dysfunction may also be involved in a more complex chain dysfunction that feeds back in a negative spiral of dysfunction and this may be different for individuals in both underlying 'causation' and type of Bacterial Overgrowth that has occurred (through gaining Overgrowth to different forms and combinations of Bacteria).
I have been fully diagnosed with Autonomic Dysfunction and also Hypogammaglobulinaemia (immune dysfunction), whether these are cause or effect is what needs to be properly researched (chicken or egg?). I have noted that many ME/CFS are stating similar things. There is evidence for much of what i have written, but I am only scratching the surface of this problem!
Paul.
Both D-La/Bacterial Overgrowth and Mitochondrial Dysfunction may also be involved in a more complex chain dysfunction that feeds back in a negative spiral of dysfunction and this may be different for individuals in both underlying 'causation' and type of Bacterial Overgrowth that has occurred (through gaining Overgrowth to different forms and combinations of Bacteria).
I have been fully diagnosed with Autonomic Dysfunction and also Hypogammaglobulinaemia (immune dysfunction), whether these are cause or effect is what needs to be properly researched (chicken or egg?). I have noted that many ME/CFS are stating similar things. There is evidence for much of what i have written, but I am only scratching the surface of this problem!
Paul.
Thanks for your detailed response, Paul. You've given me a lot to think about and another path to pursue. I cringe at trying to find a doctor to help with this, as my experience in finding a doctor to help with anything is very frustrating!
You could try getting diagnosed in stages as I did. Bacterial Overgrowth first and then D-La. Dr. Ray Shidrawi at the Homerton University Hospital for Bacterial Overgrowth. He can be seen privately.
If you have the Gut symptoms which go with these problems (the Gut symptoms with me were definite but not as severe as the illness that go's with them) then you need to start with Bacterial Overgrowth and then suggest D-La if you have what feels like Flu or Infection, Systemic or Neurological symptoms that fluctuate from mild to severe. I went 18 years with the symptoms being treated as anxiety, psychological or Somatic and like you had many bad experiences with Doctors.
I was left on one occasion by NHS Doctors in A&E very unwell, to suffocate in a private room on my own without observation or investigations for over 9 or more hours. I was seen frequently in A&E by Doctors very unwell with abdominal pain, dizziness, drunk like symptoms, slurred speech at time, confusion and seizure during the worst episodes or breathing difficulty.
D-La even affects your heart. It is systemic poisoning that causes different levels of abnormal illness with neurological symptoms, fatigue and weakness at times.
Don't be afraid to talk to Doctors, you have to take control, push and ask to get a second opinion. Ask for a Gastroenterologist who understands Bacterial Overgrowth. I found more on pet sites about Bacterial Overgrowth than from any NHS Doctor, they simply do not have the training or imagination! You will need a Consultant Gastroenterologist. The only Doctor that I know who is expert in B.O. is Dr, Myhill.
If you are certain of either B.O. or D-La then I would pay to see a Gastro like Dr. Ray Shidrawi or research one in your area ot Dr. Myhill. You can ask who is expert in B.O close to you and once diagnosed ask for D-La to be considered.
Dr. Luke White states that anyone with Bacterial Overgrowth is at risk of D-La (D-La more prevalent than we think).
I am now at the next stage, fighting the NHS who after leaving me without diagnosis for 18 years are refusing to take any responsibility. I went for shoulder surgery in June 2017 a few months after D-LA diagnosis and expected that now I had been fully diagnosed that I would be treated normally, but I was told after waking with breathing difficulty after surgery that I did not have the diagnosis (D-La) by the Ward Doctor who told me quite firmly that I had Chronic Fatigue and Fibromyalgia! I was given analgesia containing Sucrose and became very unwell in Hospital from D-La. I had to ask for all analgesia to be stopped (I had a full width shoulder tear that had to have bone anchors. It is a very painful procedure). I left Hospital in agony and the Complaint reply from the Hospital/Chief Executive was that I did not have the diagnosis so that it was not necessary to take into consideration prior to surgery. Even the anaesthetist had not been notified, which I had to do myself and again the NHS are refusing to take any responsibility. I have sent in all of the information to the NHS Chief Executive concerning ME/CFS and D-La, but they have made no attempt to investigate the possibility that a Subset of ME/CFS may have D-Lactic acidosis.
I do not think that I will ever have trust in Doctors after being forced to diagnose my own problem and I may never get over my mistreatment and want to help make sure that others with ME/CFS are not treated in the same way.
I made a complaint to the NHS because, like you I had been badly treated by Doctors since falling ill. They just do not recognize ME/CFS. I am wondering what the NHS will do when they are overrun by litigation from others who have been misdiagnosed. The majority of NHS Doctors believe that ME/CFS = Psychological problems. The reason that I called myself Avenger is because I hope to contribute to redressing the balance. Not one of us should have to cringe at trying to find help from a Doctor.
I believe that many of us have been mistreated or abused by Doctors who have taken an oath to do good, Non-Malefience or to do as little harm as possible. But a great deal of harm has been done to us in just not taking our symptoms seriously. It is time to fight back. The NHS must be held accountable for their actions.
I can only wish you success, Paul.
knackers323
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to those that food effects them, how soon after eating do your symptoms get worse?
It can take around 3 days for symptoms to start now plus or minus or after antibiotic treatment can stop for weeks or even longer. There is no set time but it can take 64 hours to stop the symptoms with a hard 0% Diet. It also depends upon whether your Bacterial Overgrowth have become resistant to some antibiotics as happened to me.
On a few occasions when I was forced to eat Carbohydrates on Holiday I felt OK for 2 to 3 days and actually started to believe that thing must be getting better and continued using Carbohydrates for another few days after returning home, and then the symptoms started, mildly at first, mildly dizzy, flu like aching and odd pin prick sensations, sometimes feeling mildly sick and then the symptoms escalated.
The symptoms had been getting worse for a year or more just before I was diagnosed and I could not keep them at bay with antibiotics because I was failing to respond due to resistance.
The diet has been may salvation and I am becoming more adept and disciplined using the diet. If I become ill I can stop the symptoms over a few days.
If you are trying the diet, it is best to keep to meat, eggs, fish, cheese and veg with low carb yoghurt, and low sugar fruit (small quantity). It was easy for me to fail the diet at first and you have to be aware of things that look like veg that are high in Carbs. Chick Peas have 61% Carbohydrates, Beans 63% etc.
Paul.
Possible reason that ME/CFS has remained hidden for so long: My belief based upon my own symptoms and what many of you have written is that Bacterial Overgrowth acts as a hidden infection because it remains in the Gut as Overgrowth of Bacteria (many of which are found in a normal balanced microbiome), but the metabololites produced poison the host without activating the immune system causing Flu like symptoms and in some cases extreme illness:
I have already stated that my belief is that there may be a number of forms of Bacterial Overgrowth, that IBS is a more benign form of Bacterial Overgrowth and that D-Lactic acidosis may be the cause of neurological symptoms for a subset (evidence from the Australian research team. Sheedy et al).
I now believe that D-Lactic acidosis is a form of infection but without giving rise to a temperature, because the immune system is not activated, and this may be why it has been misunderstood for so long in ME/CFS. Many ME/CFS describe Flu like or infection symptoms as I had.
Criteria for infection is the invasion of an organism's body tissues by disease causing agents, their multiplication and the reaction of the host tissues to infectious agents and the toxins they produce. In D-La the infection is due to Overgrowth multiplication that remains in the Gut, but the toxins that cannot be metabolised invade the hosts tissues without giving rise to any temperarure because the immune system is not activated as it would normally be in an infection. I had frequently described infection to my Doctor but without it being understood.
With D-La the host feels the symptoms of infection (Flu like) without any change in temperature. Doctors who are trained to look for temperature are blind to the underlying cause, because it breaks the rules and appears as though that nothing is happening except psychologically and will then blame the patient.
With D-La the infection is caused by Overgrowth of a particular Species producing the toxin D-Lactic acid (and there may also be other metabolites involved with unknown attributes found by Sheedy).
The reason that this has been misunderstood for so long is that although you get the symptoms of an infection such as Flu like, or Infection like symptoms, D-Lactic acidosis generates no change in temperature (I have also describes for 18 years as Flu like, Infection and poisoning). Every time that i was unwell Doctors took my temperature. I diagnosed my own problem when I realized that no one would help me or were even interested in what they perceived as a psychological problem.
Doctors do not understand infection unless it comes with temperature. In D-La you have all the symptoms but no temperature. Many of you have reported the same lack of temperature in a number of threads.
My belief is that Bacterial Overgrowth barely describes the condition and should be viewed as an infection (and there may be more than one form of Overgrowth. IBS has only recently found to be related to Bacterial Overgrowth). Sheedy found two D-Lactic producing Bacteria, but Fungal infections such as Candida also produce D-Lactic acid. It may be the toxins or metabolites produced by Bacterial Overgrowth that causes illness and Flu like symptoms in ME/CFS for at the least a Subset.
D-Lactic acidosis is also a cause of Breathing Difficulty often seen as Hyperventilation. Simon Wessely had established the lack of relationship between Hyperventilation and CFS. Hyperventilation is a natural response to D-Lactic acidosis and my belief the cause of both neurological symptoms and cause of Flu or infection like illness without temperature.
Paul.
I have already stated that my belief is that there may be a number of forms of Bacterial Overgrowth, that IBS is a more benign form of Bacterial Overgrowth and that D-Lactic acidosis may be the cause of neurological symptoms for a subset (evidence from the Australian research team. Sheedy et al).
I now believe that D-Lactic acidosis is a form of infection but without giving rise to a temperature, because the immune system is not activated, and this may be why it has been misunderstood for so long in ME/CFS. Many ME/CFS describe Flu like or infection symptoms as I had.
Criteria for infection is the invasion of an organism's body tissues by disease causing agents, their multiplication and the reaction of the host tissues to infectious agents and the toxins they produce. In D-La the infection is due to Overgrowth multiplication that remains in the Gut, but the toxins that cannot be metabolised invade the hosts tissues without giving rise to any temperarure because the immune system is not activated as it would normally be in an infection. I had frequently described infection to my Doctor but without it being understood.
With D-La the host feels the symptoms of infection (Flu like) without any change in temperature. Doctors who are trained to look for temperature are blind to the underlying cause, because it breaks the rules and appears as though that nothing is happening except psychologically and will then blame the patient.
With D-La the infection is caused by Overgrowth of a particular Species producing the toxin D-Lactic acid (and there may also be other metabolites involved with unknown attributes found by Sheedy).
The reason that this has been misunderstood for so long is that although you get the symptoms of an infection such as Flu like, or Infection like symptoms, D-Lactic acidosis generates no change in temperature (I have also describes for 18 years as Flu like, Infection and poisoning). Every time that i was unwell Doctors took my temperature. I diagnosed my own problem when I realized that no one would help me or were even interested in what they perceived as a psychological problem.
Doctors do not understand infection unless it comes with temperature. In D-La you have all the symptoms but no temperature. Many of you have reported the same lack of temperature in a number of threads.
My belief is that Bacterial Overgrowth barely describes the condition and should be viewed as an infection (and there may be more than one form of Overgrowth. IBS has only recently found to be related to Bacterial Overgrowth). Sheedy found two D-Lactic producing Bacteria, but Fungal infections such as Candida also produce D-Lactic acid. It may be the toxins or metabolites produced by Bacterial Overgrowth that causes illness and Flu like symptoms in ME/CFS for at the least a Subset.
D-Lactic acidosis is also a cause of Breathing Difficulty often seen as Hyperventilation. Simon Wessely had established the lack of relationship between Hyperventilation and CFS. Hyperventilation is a natural response to D-Lactic acidosis and my belief the cause of both neurological symptoms and cause of Flu or infection like illness without temperature.
Paul.
ljimbo423
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While I agree that a bacterial overgrowth in my gut is the cause of my cfs also. Immune system activation in cfs is widely accepted by most researchers and cfs specialist and many studies confirm this.
https://mecfsresearchreview.me/2018/04/26/a-new-research-landscape-emerges-in-america/
Here is a slide of Mark Davis' results of CD8 T cell clonal expansion in cfs patients. This only happens with ongoing immune system activation-
Jim
Hi, I am referring to the lack of temperature during Flu like or infection symptoms in a hidden infection, not an autoimmune response. I think that you have may have missed the point.
An autoimmune response is different and may come from Bacterial Overgrowth damaging the mucosal lining of the Gut causing 'leaky gut' and an autoimmune response. SIBO is related to autoimmune activation when food and bacteria are able to pass into the bloodstream when the cell wall of the Gut becomes permeable.
I have suffered D-Lactic acidosis for 18 years and Doctors have frequently checked my temperature when I was very unwell. I described my illness as infection of Flu like symptoms for 18 years.
Paul.
An autoimmune response is different and may come from Bacterial Overgrowth damaging the mucosal lining of the Gut causing 'leaky gut' and an autoimmune response. SIBO is related to autoimmune activation when food and bacteria are able to pass into the bloodstream when the cell wall of the Gut becomes permeable.
I have suffered D-Lactic acidosis for 18 years and Doctors have frequently checked my temperature when I was very unwell. I described my illness as infection of Flu like symptoms for 18 years.
Paul.
ljimbo423
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What do you think is causing the immune system activation in cfs that Mark Davis and others have found? D-lactic acid or something else? I'm just trying to understand your viewpoint.
Jim
I think that we are talking about the difference between the lack of overwhelming immune response to an infection where pyrogens are normally produced to raise the body temperature and the general activation of an immune response in SIBO or Leaky Gut due to Bacterial Overgrowth.
I am looking at the opportunistic Overgrowth of Bacteria that produce metabolites which poison the host in just the same way as an overwhelming infection that spreads throughout the body as a direct result of the metabolites produced. The immune response from the damage caused by the bacteria to the Gut wall may be a different form of immune activation and the cause of a number of different autoimmune disease's including M.S.
Paul
I
I am looking at the opportunistic Overgrowth of Bacteria that produce metabolites which poison the host in just the same way as an overwhelming infection that spreads throughout the body as a direct result of the metabolites produced. The immune response from the damage caused by the bacteria to the Gut wall may be a different form of immune activation and the cause of a number of different autoimmune disease's including M.S.
Paul
I
Hi Jim, my belief is that the immune response that you are referring to is due to damage to the Gut wall causing food and bacteria to enter the blood stream. The production of metabolites including D-Lactic acid are the direct cause of the Flu or infection like symptoms and is different to the immune response that you are referring to.
I can make this statement because I am now controlling those symptoms through abstaining from Carbohydrates and Simple Sugars which produce the D-Lactic acid (my symptoms can start within days of using carbohydrates). With Bacterial Overgrowth and D-La the Flu like symptoms can also be stopped through using antibiotics just as they can in a normal infection.
This is evidenced by the findings of Sheedy who found D-Lactic producing bacteria in other CFS patients.
Paul.
Hi Jim,
I was rather tired when I wrote last night and was out of phase with your replies.
The immune findings that you have shown could come from metabolites or Gut permeability due to Bacterial Overgrowth and will need further research. What I have been suggesting may only be a starting point for research.
I can actually feel the changes caused by D-Lactic acid and possibly other metabolites produced by this form of Bacterial Overgrowth as Flu like symptoms and that has been my focus. I have been on other threads where a number of other sufferers have talked of the infection or Flu like symptoms without temperature as I had also described for nearly two decades.
I have also suffered a bowel perforation and Sepsis which returned and on a number of occasions. I had almost identical Flu like/infection like symptoms as with exaccerbations of D-Lactic acidosis, but without pyrogens and high temperature (I should have included this in my rationale). I cannot tell the difference between the symptoms of infection and the symptoms of D-Lactic acidosis, except for the overwhelming immune response which causes my temperature to increase. It is the temperature increase that Doctors are looking for with infection or Flu like symptoms (which have been expressed in ME/CFS for decades).
My Flu like symptoms and illness are now controlled by not allowing the Bacteria to produce such high levels of metabolites through diet. I believe that it is most unlikely that I am the only person with D-La and I have already been contacted by others who have both D-La and Bacterial Overgrowth on this site. I believe that there may be a number of other ME/CFS who may benefit. I could not walk away from so many people who may be suffering as I was with Doctors who are blind to Bacterial Overgrowth and D-la which I feel are acting as an infection. There may be some differences in the way that we are affected if there is more than one form of Overgrowth as in IBS.
I hope that this better explains what I may not have put so well earlier. It is rather complex and will need a great deal of research before it is fully understood, but all forms of Bacterial Overgrowth can be controlled through an exclusion diet.
Paul.
I was rather tired when I wrote last night and was out of phase with your replies.
The immune findings that you have shown could come from metabolites or Gut permeability due to Bacterial Overgrowth and will need further research. What I have been suggesting may only be a starting point for research.
I can actually feel the changes caused by D-Lactic acid and possibly other metabolites produced by this form of Bacterial Overgrowth as Flu like symptoms and that has been my focus. I have been on other threads where a number of other sufferers have talked of the infection or Flu like symptoms without temperature as I had also described for nearly two decades.
I have also suffered a bowel perforation and Sepsis which returned and on a number of occasions. I had almost identical Flu like/infection like symptoms as with exaccerbations of D-Lactic acidosis, but without pyrogens and high temperature (I should have included this in my rationale). I cannot tell the difference between the symptoms of infection and the symptoms of D-Lactic acidosis, except for the overwhelming immune response which causes my temperature to increase. It is the temperature increase that Doctors are looking for with infection or Flu like symptoms (which have been expressed in ME/CFS for decades).
My Flu like symptoms and illness are now controlled by not allowing the Bacteria to produce such high levels of metabolites through diet. I believe that it is most unlikely that I am the only person with D-La and I have already been contacted by others who have both D-La and Bacterial Overgrowth on this site. I believe that there may be a number of other ME/CFS who may benefit. I could not walk away from so many people who may be suffering as I was with Doctors who are blind to Bacterial Overgrowth and D-la which I feel are acting as an infection. There may be some differences in the way that we are affected if there is more than one form of Overgrowth as in IBS.
I hope that this better explains what I may not have put so well earlier. It is rather complex and will need a great deal of research before it is fully understood, but all forms of Bacterial Overgrowth can be controlled through an exclusion diet.
Paul.
mrquasar
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@Avenger I strongly suspect that I have d-lactic acidosis or a related bacterial overgrowth. I won't list my symptoms here but I've mentioned them in some of my older posts. I'm planning on taking a course of metronidazole sometime soon, it's on hold for the moment as I'm treating another health condition. But I did want to mention that I discovered by accident that peppermint oil seems to be alleviating my symptoms. Peppermint oil has been demonstrated to have antibacterial properties so it may be a useful supplement to try if you suspect you have bacterial overgrowth.
Hi, sounds very interesting. I totally believe you! I will give it a try.
I was diagnosed with Bacterial Overgrowth a year before D-Lactic acidosis. It has been impossible to destroy the bacteria completely and I will fall ill again if I fail the diet.
How long are your symptoms alleviated for with peppermint oil? Or do you use it every day?
I had used Metronidazole intermittently for a number of years before diagnosis in the belief that my symptoms were infection. Metronidazole is also the choice antibiotic for D-La. But it never completely destroyed the Overgrowth although at first I would not have symptoms for weeks to months before they returned.
You could also try Metronidazole with Peppermint oil to see if you can destroy the Overgrowth once and for all.
In the end I failed to respond to antibiotics and was saved by the exclusion diet. Peppermint oil may well work for me. I need to try this when I next fall ill after failing the diet.
Perhaps as many minds we can overcome this together.
Thank you, Paul.
I was diagnosed with Bacterial Overgrowth a year before D-Lactic acidosis. It has been impossible to destroy the bacteria completely and I will fall ill again if I fail the diet.
How long are your symptoms alleviated for with peppermint oil? Or do you use it every day?
I had used Metronidazole intermittently for a number of years before diagnosis in the belief that my symptoms were infection. Metronidazole is also the choice antibiotic for D-La. But it never completely destroyed the Overgrowth although at first I would not have symptoms for weeks to months before they returned.
You could also try Metronidazole with Peppermint oil to see if you can destroy the Overgrowth once and for all.
In the end I failed to respond to antibiotics and was saved by the exclusion diet. Peppermint oil may well work for me. I need to try this when I next fall ill after failing the diet.
Perhaps as many minds we can overcome this together.
Thank you, Paul.
Update of reasons that Bacterial Overgrowth and D-Lactic acidosis may be the cause of ME/CFS in at least At least a Subset of sufferers:
Dear Professor,
I am sending a list of reasons that Bacterial Overgrowth/D-Lactic acidosis may be one of the causes of ME/CFS which may be helpful to others with serious symptoms such as Hypoglycemia and Breathing Difficulty/Hyperventilation in ME/CFS (researched by Professor Belch). Many of these symptoms are experienced in ME/CFS such as gastrointestinal symptoms and when seen together there are many similarities between D-La and ME/CFS, and Bacterial Overgrowth alone can cause fatigue and milder CFS symptoms.
1.Neurological Symptoms often found in the worst affected; that ME patients have described for decades are also caused by D-Lactic fluctuations due to Overgrowth. I had multiple symptoms which you already know were diagnosed as Somatization because Doctors were unable to understand because many investigations were normal. The fluctuating illness is due to fluctuations in abnormal bi-production of D-Lactic acid produced by the level of Overgrowth and quantity of Carbohydrates/Sugars that cannot be digested in D-La.
2. Hypoglycemia can also be caused by Bacterial Overgrowth. I had frequent and sometimes serious Hypoglycemia which stopped when I started the 0% (very low) Carbohydrate and Simple sugar exclusion diet. I was told by the Gastroenterologist, Dr. Ray Shidrawi that Hypoglycemia is caused by competition for food in the Small Intestine. But I am also wondering if it can be caused or worsened by Neurological changes due to D-Lactic poisoning?
3. Breathing difficulty; including Hyperventilation; Hyperventilation is a natural response to acidosis. I had experienced fluctuating and sometimes serious breathing problems due to fluctuating levels of D-Lactate (Wessely's statement that he had established no relationship between Hyperventilation and ME/CFS would be incorrect because he would not have investigated acidosis/blood gasses during exacerbations of D-La in patients).
4. Flu or Infection like Symptoms without Temperature;
I now believe that D-Lactic acidosis is a form of infection but without giving rise to any temperature, and this may be why it has been misunderstood for so long in ME/CFS. Many ME/CFS describe Flu like or infection symptoms as I had.
The 'infection' is an Overgrowth of Bacteria that are normal to the Gut, which remains in the Gut and metabolites such as D-Lactate poison the host but without an immediate immune or temperature response (although autoimmune problems will happen due to Bacterial Overgrowth damaging the mucosal lining and causing 'Leaky Gut') .
With D-La the host feels the symptoms of infection (Flu like) without any change in temperature. Doctors who are trained to look for temperature are blind to the underlying cause, because D-La breaks the rules and appears as though nothing is happening except psychologically and will then blame the patient.
5. Muscle Pain and Weakness; is also caused by D-La and I also suffered post activity fatigue along with frequent increased heart rate and tachyarrhythms after activity. D-La is known to cause increased heart rate and tachyarrhythms.
6. Abdominal Symptoms such as pain and bloating, Reflux and gastrointestinal symptoms are caused by Bacterial Overgrowth; My frequent Reflux and gastrointestinal symptoms also stopped along with Hypoglycemia soon after the exclusion diet was implemented.
7. Brain Fog and Confusion; I had periods of what I described as feeling dopey, dizzy or light headed to periodic confusion with slurred speech when most ill and even seizure. This also stopped after treating D-La with the exclusion diet.
The picture may be very complex because D-Lactic acidosis is always secondary to other problems such as Motility, Diabetes and a number of other disorders, but I am hoping that you may be able to help those with similar symptoms and that this may help change the belief that this is all Somatic. Bacterial Overgrowth may also lead to D-Lactic acidosis and anyone with Bacterial Overgrowth is at risk of D-La (Luke White; D-Lactic acidosis more prevalent than we think). Bacterial Overgrowth can also cause poor motility and in effect set up a negative feed back to maintain Overgrowth.
The ME Association is not interested in investigating and have stated that ME/CFS is most definitely caused by Viral Outbreaks and I am highly suspicious of their motivation. If even a subset are affected then this will show that ME/CFS is not a Somatic (psychological) complaint and should be researched. But they have invested a great deal into viral causation. D-La is directly associated with multiple neurological symptoms and is the first explanation for such symptoms in ME/CFS.
For me there seems to be so many similarities between ME/CFS and D-Lactic acidosis or Overgrowth symptoms and according to statistics many ME/CFS have Bacterial Overgrowth and there are so many ways in which Bacterial Overgrowth can be caused including a number of frequently used medications including antibiotics, and proton pump inhibitors such as Omeprazole may be contributing (I had used Omeprazole frequently due to Helicobacter infection which is found in around 50% of the population) and there may be a chain of possible contributors that can lead to Bacterial Overgrowth and D-Lactic acidosis.
I am also being investigated again for Mitochondrial dysfunction (found to be abnormal by Dr. Myhill and during two other investigations) which may be related to D-La.
Best wishes, Paul.
Dear Professor,
I am sending a list of reasons that Bacterial Overgrowth/D-Lactic acidosis may be one of the causes of ME/CFS which may be helpful to others with serious symptoms such as Hypoglycemia and Breathing Difficulty/Hyperventilation in ME/CFS (researched by Professor Belch). Many of these symptoms are experienced in ME/CFS such as gastrointestinal symptoms and when seen together there are many similarities between D-La and ME/CFS, and Bacterial Overgrowth alone can cause fatigue and milder CFS symptoms.
1.Neurological Symptoms often found in the worst affected; that ME patients have described for decades are also caused by D-Lactic fluctuations due to Overgrowth. I had multiple symptoms which you already know were diagnosed as Somatization because Doctors were unable to understand because many investigations were normal. The fluctuating illness is due to fluctuations in abnormal bi-production of D-Lactic acid produced by the level of Overgrowth and quantity of Carbohydrates/Sugars that cannot be digested in D-La.
2. Hypoglycemia can also be caused by Bacterial Overgrowth. I had frequent and sometimes serious Hypoglycemia which stopped when I started the 0% (very low) Carbohydrate and Simple sugar exclusion diet. I was told by the Gastroenterologist, Dr. Ray Shidrawi that Hypoglycemia is caused by competition for food in the Small Intestine. But I am also wondering if it can be caused or worsened by Neurological changes due to D-Lactic poisoning?
3. Breathing difficulty; including Hyperventilation; Hyperventilation is a natural response to acidosis. I had experienced fluctuating and sometimes serious breathing problems due to fluctuating levels of D-Lactate (Wessely's statement that he had established no relationship between Hyperventilation and ME/CFS would be incorrect because he would not have investigated acidosis/blood gasses during exacerbations of D-La in patients).
4. Flu or Infection like Symptoms without Temperature;
I now believe that D-Lactic acidosis is a form of infection but without giving rise to any temperature, and this may be why it has been misunderstood for so long in ME/CFS. Many ME/CFS describe Flu like or infection symptoms as I had.
The 'infection' is an Overgrowth of Bacteria that are normal to the Gut, which remains in the Gut and metabolites such as D-Lactate poison the host but without an immediate immune or temperature response (although autoimmune problems will happen due to Bacterial Overgrowth damaging the mucosal lining and causing 'Leaky Gut') .
With D-La the host feels the symptoms of infection (Flu like) without any change in temperature. Doctors who are trained to look for temperature are blind to the underlying cause, because D-La breaks the rules and appears as though nothing is happening except psychologically and will then blame the patient.
5. Muscle Pain and Weakness; is also caused by D-La and I also suffered post activity fatigue along with frequent increased heart rate and tachyarrhythms after activity. D-La is known to cause increased heart rate and tachyarrhythms.
6. Abdominal Symptoms such as pain and bloating, Reflux and gastrointestinal symptoms are caused by Bacterial Overgrowth; My frequent Reflux and gastrointestinal symptoms also stopped along with Hypoglycemia soon after the exclusion diet was implemented.
7. Brain Fog and Confusion; I had periods of what I described as feeling dopey, dizzy or light headed to periodic confusion with slurred speech when most ill and even seizure. This also stopped after treating D-La with the exclusion diet.
The picture may be very complex because D-Lactic acidosis is always secondary to other problems such as Motility, Diabetes and a number of other disorders, but I am hoping that you may be able to help those with similar symptoms and that this may help change the belief that this is all Somatic. Bacterial Overgrowth may also lead to D-Lactic acidosis and anyone with Bacterial Overgrowth is at risk of D-La (Luke White; D-Lactic acidosis more prevalent than we think). Bacterial Overgrowth can also cause poor motility and in effect set up a negative feed back to maintain Overgrowth.
The ME Association is not interested in investigating and have stated that ME/CFS is most definitely caused by Viral Outbreaks and I am highly suspicious of their motivation. If even a subset are affected then this will show that ME/CFS is not a Somatic (psychological) complaint and should be researched. But they have invested a great deal into viral causation. D-La is directly associated with multiple neurological symptoms and is the first explanation for such symptoms in ME/CFS.
For me there seems to be so many similarities between ME/CFS and D-Lactic acidosis or Overgrowth symptoms and according to statistics many ME/CFS have Bacterial Overgrowth and there are so many ways in which Bacterial Overgrowth can be caused including a number of frequently used medications including antibiotics, and proton pump inhibitors such as Omeprazole may be contributing (I had used Omeprazole frequently due to Helicobacter infection which is found in around 50% of the population) and there may be a chain of possible contributors that can lead to Bacterial Overgrowth and D-Lactic acidosis.
I am also being investigated again for Mitochondrial dysfunction (found to be abnormal by Dr. Myhill and during two other investigations) which may be related to D-La.
Best wishes, Paul.
JES
Senior Member
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The ME organiziations are support groups for patients, they are not the ones doing the research. So I'm not sure why you are writing to them. ME Association's view that CFS/ME is caused by viral outbreaks is most definitely valid, because we have a huge number of patients whose CFS/ME got triggered by viral infection. Even the psychosomatic doctors, Wessely et al., hold the view that viral infections can trigger CFS/ME. What is disputed is whether the viruses are present only initially or whether they trigger some kind of immune dysfunction, but there is absolutely no dispute in that viruses can trigger CFS/ME.
If there is one person you should contact that would be Professor Kenny de Meirleir, who has for the last twenty years or so hold the view that CFS/ME is a result of gut dysbiosis and overgrowth of certain bacteria. He has treated his patients assuming that this hypothesis is valid, but AFAIK his success has been limited. His main medication is, or at least used to be, rifaximin, which is something I would be interested in trialing. The herbal SIBO treatments did nothing for me.
Edit: I now see that you already tried rifaximin, so nevermind that then.
If there is one person you should contact that would be Professor Kenny de Meirleir, who has for the last twenty years or so hold the view that CFS/ME is a result of gut dysbiosis and overgrowth of certain bacteria. He has treated his patients assuming that this hypothesis is valid, but AFAIK his success has been limited. His main medication is, or at least used to be, rifaximin, which is something I would be interested in trialing. The herbal SIBO treatments did nothing for me.
Edit: I now see that you already tried rifaximin, so nevermind that then.
Dear Sir,
the reason for writing to the ME Association is because I had ME/CFS and have treatment after 18 years. My symptoms were neurological which is an associated cause of ME!. I explained this and sent the findings of the Australian research team who had found high levels of D-Lactic producing Bacteria to the ME Association and their conclusion but they were not interested.
Researchers Conclusions/Sheedy;
''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.''
To assume that there is no other cause for ME but Viral outbreaks and not being prepared to investigate D-Lactic acidosis is like sticking your fingers in your ears to any other possibility.
I did contact their researchers and was told firmly that ME/CFS was related purely to viral infections.
Infections are known to be another possible causation of D-Lactic acidosis.
Viruses also affect Gut Bacteria and can alter Bacterial DNA and as such may even be implicated, but to dismiss D-Lactic acidosis is like throwing the baby out with the bathwater.
Researchers are now using modified Viruses to destroy Antibiotic Resistant Bacteria (which is further evidence that Virus can affect Gut Bacteria).
Fortunately a number of other researchers are now looking into Gut Dysbiosis which is found in many with ME/CFS and need further research.
Full abstract from Sheedy et al, for those who have not seen it yet:
Increased D-Lactic Acid Intestinal Bacteria in Patients with Chronic Fatigue Syndrome
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.
Paul.
the reason for writing to the ME Association is because I had ME/CFS and have treatment after 18 years. My symptoms were neurological which is an associated cause of ME!. I explained this and sent the findings of the Australian research team who had found high levels of D-Lactic producing Bacteria to the ME Association and their conclusion but they were not interested.
Researchers Conclusions/Sheedy;
''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.''
To assume that there is no other cause for ME but Viral outbreaks and not being prepared to investigate D-Lactic acidosis is like sticking your fingers in your ears to any other possibility.
I did contact their researchers and was told firmly that ME/CFS was related purely to viral infections.
Infections are known to be another possible causation of D-Lactic acidosis.
Viruses also affect Gut Bacteria and can alter Bacterial DNA and as such may even be implicated, but to dismiss D-Lactic acidosis is like throwing the baby out with the bathwater.
Researchers are now using modified Viruses to destroy Antibiotic Resistant Bacteria (which is further evidence that Virus can affect Gut Bacteria).
Fortunately a number of other researchers are now looking into Gut Dysbiosis which is found in many with ME/CFS and need further research.
Full abstract from Sheedy et al, for those who have not seen it yet:
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.
Paul.