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

Messages
51
Likes
38
....and I do get strange very strange heavy heartbeats in this area of my abdomen with pain at times, .....

this this this.... I have been waiting to hear that I was not alone.

These heartbeats have been so confusing. I mentioned to my gastro and he had no idea.

they can be so strong that they are disorienting right? Like a sudden wave? I noticed things like, I'm sitting on the toilet, and the beats are so strong my whole body moves from the pressure...

Also I stand on scales and the little arrow is bouncing.... etc

I am concerned about circulation type issues, but ultimately I think this is another symptom as gut changes/diet/microbe intake are always related to this occurence.


EDIT: In episodes do you also get any of the following:

-trembling/vibrations in spine
-flashing lights in eyes
-twitches/spasms
-cramps
-neuropathies
-numbess/tingling
-metallic taste
-prickly skin?


Have started another thread about the metallic and prickly skin related to my high fat intake, but it has been suggested I look at my mercury intake. It may be one factor of many, but curious as I was attributing the above symptoms to d-lactate/gut issues and not toxicity from fish etc. I have been eating a lot of fish since going low carb. 5-10 med/large servings a week. I had all of the neuro symptoms before but wondering if my limited detox capacity plus mercury makes things worse at times.
 
Last edited:

Avenger

Senior Member
Messages
238
Likes
354
Hi Michael,
Good God!!!!!! you are reporting all of the symptoms that I had left undiagnosed as ME for 18 years!

Hopefully I can help you or guide you in the right direction. The symptoms are terrifying, confounding and Doctors and Gastroenterologist's are not trained to understand! You need to get a SIBO diagnosis first which is controlled in the same way as D-Lactic acidosis.

From my own experience, the point that you are getting metallic taste and pin prick sensations, you are very ill and the symptoms of exacerbation are extreme and can be dangerous! I also used to get flashing lights, but also systemic pain and muscle weakness and pain, breathing difficulty, dizziness to confusion and even hypoglycemia when I would tremble and take more Carbohydrates which would stop Hypoglycemia but symptoms would worsen.

Cramps and Spasms are also symptoms of D-Lactic acidosis which badly affects muscles. The symptoms do fluctuate and can be extreme for a short periods, change during the day, or last weeks to months and can often start with sickness and Flu like symptoms which only stop with Antibiotics, probiotics or exclusion diet. Only an antibiotic such as Metronidazole will stop a serious exacerbation. It can take 3/4 days on a 0% Carb and sugar diet to stop the symptoms and it is easy to make mistakes because of difficulty thinking.

But I am now using Naltrexone with Probiotic's which has been successful and has shown me that my symptoms may have been due mainly to poor motility and constipation which started when I fell ill in 1999. If you have Gastrointestinal symptoms such as Constipation or poor motility, stomach emptying etc. I would urge you to trial it starting low dose between 0.5 to 3 mg. I would urge you to trial!

Sorry not to get back sooner but I have been fighting the NHS to investigate Bacterial Overgrowth on behalf of those like myself who have been swept under the carpet as ME/CFS who have D-Lactic acidosis, SIBO, IBS or different forms of Bacterial Overgrowth and in a dogfight with the Chief Executive who have tried to dishonestly hide that they had diagnosed my symptoms as Somatization (Psychological) due to lack of training and understanding.

Although I have a formal diagnosis from a D-Lactic Consultant, the Chief Executive are trying to say that D-Lactic acidosis has not been clinically diagnosed through D-Lactic assay, while at the same time I am not allowed to have a D-Lactic assay because my local Pathology has stated that they have no one to interpret the Blood Gas or D-Lactic assays (when samples are sent to Birmingham Children's Hospital and interpreted there)! I believe that they are suppressing the probability that Bacterial Overgrowth is the cause in at least a subset of ME/CFS. They should be bending over backwards to investigate this plague which is now affecting several million people across the globe.

I was helped by another member (SamB) who has followed my conversations after diagnosis of D-Lactic acidosis and told me about Naltrexone (used at low dosage) which has been invaluable and I am now given it on prescription. My belief is that there are many on this site who have similar Gastrointestinal issues causing a range of different Bacterial Overgrowth's explaining differences and similarities. The most dangerous is D-Lactic Overgrowth, but other forms of SIBO also cause a wide range of similar symptoms and fatigue. For me Motility must have been the main cause of Overgrowth in my small intestine allowing Overgrowth to occur. But different Bacteria involved are able to produce Methane and Hydrogen, which can increase or reduce motility through the direct effects of the gas and metabolites produced on the membranes in the Gastrointestinal tract.

Both Bacterial Overgrowth and D-Lactic acidosis are complex and the place to start is getting a diagnosis for the Gut issues which may include IBS or SIBO symptoms such as Constipation or Diarrhea, slow or fast motility, bloating or dyspepsia, reflux, sickness etc.

The next stage is to find the cause of Overgrowth and get motility investigations; but there are many other causes of Overgrowth including Diabetes (interestingly linked to the same Starches/Carbohydrates causing D-Lactic acidosis).

Diet can be used cutting out Carbohydrates and all Sugars for a few weeks to see if the Gut and Systemic symptoms are caused by Overgrowth. Then you will have to experiment. You will have to use a diet such as Dr. Myhill's website for low Carbs and see some of her online recommendations on Utube etc. Dr. Myhill has been treating ME/CFS and Fatigue through diet and supplements for many years and is probably the best source of understanding these issues.

Recent reply to another member;

I have been diagnosed with D-Lactic acidosis after 18 years of ME.

It causes neurological systemic symptoms that are both fluctuating, intermittent and can mask as almost anything including ME/CFS, because it is a form of systemic poisoning caused through an abnormal Overgrowth of Gut Bacteria which produce the neurotoxin and poison D-Lactic acid. I had headaches, sight difficulty, kidney pain at times and frequent dizziness to confusion and breathing difficulty with intermittent weakness and hypoglycemia.

Fatigue is horrendous; do you have any Gastrointestinal symptoms, which are often overlooked as they are far less disturbing than the neurological symptoms that are produced?

If you have Gastrointestinal symptoms this may be due to Bacterial Overgrowth, which acts much like an infection, producing a number of metabolites including D-Lactate, which can vary from mild production to severe and can be life threatening, seizure, coma or death and can cause symptoms such as abnormal fatigue, dizziness and difficulty thinking to severe periods of confusion, muscle weakness and breathing difficulty due to high CO2 and levels of acidosis and D-Lactate entering spinal fluid. It can affect at the cellular level to cause mitochondrial dysfunction and can affect blood sugar and give symptoms like hypoglycemia. All of these problems affect your brain and nervous system. I have had diagnosed Seizure during one of many similar episodes not seen in A&E.

Doctors have no understanding of these issues and can only gauge by performing Blood Gas and D-Lactic assays which they are not likely to offer. The Overgrowth itself should be identified and can be monitored to understand the effects of different interventions.

The problem is that D-Lactic acidosis has been deemed a rare disorder and mainly due to 'short bowel syndrome'. I no longer believe that it is rare or only due to 'short bowel syndrome'. My belief is that it can be caused by a number of different diseases and medications eg. Antibiotics alone can cause Bacterial Overgrowth through selecting through resistance and decimation of other symbiotic colonies (that may not be able to cope with the number of variables provided by modern living which includes high levels of starches and antibiotics). We are fall out in slow adaptation process that has taken many millennium to adapt such a complex symbiosis, but there is still hope and the possibility of Fecal Transplant, which has already been used successfully in a number of patients with ME/CFS!

I believe that D-Lactic acidosis may be behind a number of deaths because it can be fatal and during an extreme exacerbation affects abnormal heat rates and tachyarrhythms in patients who may have already been weakened for many years. The symptoms can affect any organ and cause not only systemic neurological symptoms but mitochondrial dysfunction.

See the different case reports online for treatment of D-Lactic acidosis including Birmingham Children's Hospital and the use of Probiotics and Fecal Transplant to reverse the symptoms.
https://www.researchgate.net/deref/http%3A%2F%2Fadc.bmj.com%2F
https://www.researchgate.net/deref/http%3A%2F%2Fgroup.bmj.com%2F
Paul.
 

Avenger

Senior Member
Messages
238
Likes
354
Hi Michael,
I forgot, you can have high blood pressure along with abnormally fast heartbeats during exacerbation's of D-Lactic acidosis and any activity can make things much worse. Your symptoms sound very similar to mine.

You must be very worried by the sheer number of systemic symptoms that can occur and the way that symptoms fluctuate. I was traumatized and have never got over the way that i was treated by Doctors who are blind to the symptoms because they have no training to identify or understand the signatures that can only be found by investigating either D-Lactic assays, Blood Gasses, Spinal Fluid or looking for Bacterial Overgrowth in Fecal matter. You need to ask for a Consultant who is expert in identifying SIBO or IBS.

The Overgrowth has to be identified and is used to understand how successful different interventions that have been used to reduce D-Lactic production. Birmingham Children's Hospital used the measurement of overgrowth of D-Lactic Bacteria to identify and control the symptoms in a child with D-La.

Paul.
 

Avenger

Senior Member
Messages
238
Likes
354
I firmly believe I have this also - I respond to herbal antibiotics very well. I've mentioned it to my go who basically laughed and said only people in near death have acidosis... how can I go about getting tested in the UK? Do you know?
Dear Hopefull, Doctors are not trained and I have also spoken to 3 Consultant Gastroenterologiasts who are also not trained. D-Lactic acidosis is a specialism within Gastroenterology.

Many Doctors see D-Lactic acidosis as only due to short bowel syndrome. They have no training to understand thee issues at all. This is why it has remained in the dark for so long. A simple issue such as poor motility can cause D-Lactic acidosis, because the waves that normally clear and push foods through the Gastrointestinal Tract do not function for a number of reasons (Diabetes can cause D-Lactic acidosis and changes in motility, so can Kidney Failure and a lot of other disease processes). Although patients can also have D-La with Diarrhea.

Prescription drugs can also contribute or cause D-La, such as antibiotics which can select for different Overgrowths of Bacteria. Drugs such as Omeprazole that lower stomach acid will also allow unwanted bacteria to enter, which may happen during a period of illness or other problems resulting in Overgrowth).

Methane and Metabolites produced can also slow motility in a self sustaining cycle that may provide the Bacteria with a better foothold.

I am using Naltrexone as a Prokinetic along with Probiotics and my symptoms have been controlled for the first time in many years (but too early to state a cure yet)! My problem has almost certainly been related to poor motility. I am now eating fairly normal foods including Cabohydrates, but Nattrexone may not work for everyone, depending on the underlying cause of Bacterial Overgrowth (there are many causes including Diabetes which is interestingly caused by the same Starches and Sugars related to Bacterial Overgrowth).

I suggest that anyone with Gastrointestinal Symptoms of SIBO or IBS who have Constipation and ME/CFS should trial Naltrexone! I have found few or no side effects. But Naltrexone should be taken early morning as affects sleep at night (although this may only be temporary). I have found that the effects do not stop even after missing a dose (0.5 to 3mg low dosage; start very low and use the lowest possible when symptoms improve).

Paul.
 
Last edited:

Avenger

Senior Member
Messages
238
Likes
354
Low dose naltrexone: side effects and efficacy in gastrointestinal disorders.
Ploesser J1, Weinstock LB, Thomas E.
Author information
1St. Louis College of Pharmacy, St. Louis, Missouri.
Abstract
Use of low dose naltrexone has been advocated for a variety of medical problems. Only a few articles published in peer review journals have documented side effects of low dose naltrexone. The purpose of this study was to determine the frequency of adverse effects of low dose naltrexone in patients who have been treated for a variety of gastrointestinal disorders. The secondary purpose was to determine global efficacy in a retrospective survey. Patients (206) form a single gastroenterologist's clinical practice who had been prescribed naltrexone were mailed a survey to evaluate the side effects and efficacy of naltrexone. Patients had either irritable bowel syndrome without evidence for small intestinal bacterial overgrowth, chronic idiopathic constipation, or inflammatory bowel disease. Patients with diarrhea were given 2.5 mg daily, constipation 2.5 mg twice daily, and inflammatory bowel disease 4.5 mg daily. In the patients who returned the survey, 47/121 (38.8%) had no side effects. Of the 74/121 (61.2%) patients who had side effects, 58 had one or more neurological complaints, and 32 had one or more gastrointestinal side effects. In the patients with side effects, 24/74 (32.4%) had short lived symptoms. Low dose naltrexone was terminated owing to side effects in 20/74 patients (27.0%). In 13 patients with idiopathic irritable bowel syndrome, 2 were markedly worse. In 85 patients with irritable bowel syndrome-small intestinal bacterial overgrowth, 15 were markedly improved, 32 were moderately worse, and 1 was markedly worse. In 12 patients with chronic constipation, 7 were markedly improved, 1 was moderately improved, 1 was mildly improved, and 4 were unchanged. Low dose naltrexone frequently has side effects but in most is tolerable. It appears to be helpful for a member of patients with gastrointestinal disorders.
 

Avenger

Senior Member
Messages
238
Likes
354
Thank you so much Paul for your information. I'm taking all this back to my gp to see if I can be referred. I've tried for 2 days with no carb but i feel so weak because of it... I'm at a loss and I know I need professional assistance. Thanks again for your help and time, Vicki

Hi Wayne,
I remembered that you had similar Gastrointesinal Issues?

I am now using Naltrexone. It is used as a prokinetic at low dosage (0.5 to 3 mg per day, taken in the morning).

It has been used for similar Gastrointestinal issues and is greatly helping me.

I have been able to come off my diet, but I am also using a number of non-D-Lactic producing Bacteria also (alternating).

This is still experimental, because I crashed using Probiotics alone.

Naltrexone is the new wonder drug (formerly used for alcoholism) but at low dosage it has been used for MS and a number of other illness's as well as SIBO and I am now given it on prescription.

I have had the longest period without serious symptoms. There have been no side effects apart from feelings of euphoria!

I am trying for a Fecal Transplant, to reverse the condition, but may not need it!


Paul.
 

Avenger

Senior Member
Messages
238
Likes
354
Hi Michael,
Good God!!!!!! you are reporting all of the symptoms that I had left undiagnosed as ME for 18 years!

Hopefully I can help you or guide you in the right direction. The symptoms are terrifying, confounding and Doctors and Gastroenterologist's are not trained to understand! You need to get a SIBO diagnosis first which is controlled in the same way as D-Lactic acidosis.

From my own experience, the point that you are getting metallic taste and pin prick sensations, you are very ill and the symptoms of exacerbation are extreme and can be dangerous! I also used to get flashing lights, but also systemic pain and muscle weakness and pain, breathing difficulty, dizziness to confusion and even hypoglycemia when I would tremble and take more Carbohydrates which would stop Hypoglycemia but symptoms would worsen.

Cramps and Spasms are also symptoms of D-Lactic acidosis which badly affects muscles. The symptoms do fluctuate and can be extreme for a short periods, change during the day, or last weeks to months and can often start with sickness and Flu like symptoms which only stop with Antibiotics, probiotics or exclusion diet. Only an antibiotic such as Metronidazole will stop a serious exacerbation. It can take 3/4 days on a 0% Carb and sugar diet to stop the symptoms and it is easy to make mistakes because of difficulty thinking.

But I am now using Naltrexone with Probiotic's which has been successful and has shown me that my symptoms may have been due mainly to poor motility and constipation which started when I fell ill in 1999. If you have Gastrointestinal symptoms such as Constipation or poor motility, stomach emptying etc. I would urge you to trial it starting low dose between 0.5 to 3 mg. I would urge you to trial!

Sorry not to get back sooner but I have been fighting the NHS to investigate Bacterial Overgrowth on behalf of those like myself who have been swept under the carpet as ME/CFS who have D-Lactic acidosis, SIBO, IBS or different forms of Bacterial Overgrowth and in a dogfight with the Chief Executive who have tried to dishonestly hide that they had diagnosed my symptoms as Somatization (Psychological) due to lack of training and understanding.

Although I have a formal diagnosis from a D-Lactic Consultant, the Chief Executive are trying to say that D-Lactic acidosis has not been clinically diagnosed through D-Lactic assay, while at the same time I am not allowed to have a D-Lactic assay because my local Pathology has stated that they have no one to interpret the Blood Gas or D-Lactic assays (when samples are sent to Birmingham Children's Hospital and interpreted there)! I believe that they are suppressing the probability that Bacterial Overgrowth is the cause in at least a subset of ME/CFS. They should be bending over backwards to investigate this plague which is now affecting several million people across the globe.

I was helped by another member (SamB) who has followed my conversations after diagnosis of D-Lactic acidosis and told me about Naltrexone (used at low dosage) which has been invaluable and I am now given it on prescription. My belief is that there are many on this site who have similar Gastrointestinal issues causing a range of different Bacterial Overgrowth's explaining differences and similarities. The most dangerous is D-Lactic Overgrowth, but other forms of SIBO also cause a wide range of similar symptoms and fatigue. For me Motility must have been the main cause of Overgrowth in my small intestine allowing Overgrowth to occur. But different Bacteria involved are able to produce Methane and Hydrogen, which can increase or reduce motility through the direct effects of the gas and metabolites produced on the membranes in the Gastrointestinal tract.

Both Bacterial Overgrowth and D-Lactic acidosis are complex and the place to start is getting a diagnosis for the Gut issues which may include IBS or SIBO symptoms such as Constipation or Diarrhea, slow or fast motility, bloating or dyspepsia, reflux, sickness etc.

The next stage is to find the cause of Overgrowth and get motility investigations; but there are many other causes of Overgrowth including Diabetes (interestingly linked to the same Starches/Carbohydrates causing D-Lactic acidosis).

Diet can be used cutting out Carbohydrates and all Sugars for a few weeks to see if the Gut and Systemic symptoms are caused by Overgrowth. Then you will have to experiment. You will have to use a diet such as Dr. Myhill's website for low Carbs and see some of her online recommendations on Utube etc. Dr. Myhill has been treating ME/CFS and Fatigue through diet and supplements for many years and is probably the best source of understanding these issues.

Recent reply to another member;

I have been diagnosed with D-Lactic acidosis after 18 years of ME.

It causes neurological systemic symptoms that are both fluctuating, intermittent and can mask as almost anything including ME/CFS, because it is a form of systemic poisoning caused through an abnormal Overgrowth of Gut Bacteria which produce the neurotoxin and poison D-Lactic acid. I had headaches, sight difficulty, kidney pain at times and frequent dizziness to confusion and breathing difficulty with intermittent weakness and hypoglycemia.

Fatigue is horrendous; do you have any Gastrointestinal symptoms, which are often overlooked as they are far less disturbing than the neurological symptoms that are produced?

If you have Gastrointestinal symptoms this may be due to Bacterial Overgrowth, which acts much like an infection, producing a number of metabolites including D-Lactate, which can vary from mild production to severe and can be life threatening, seizure, coma or death and can cause symptoms such as abnormal fatigue, dizziness and difficulty thinking to severe periods of confusion, muscle weakness and breathing difficulty due to high CO2 and levels of acidosis and D-Lactate entering spinal fluid. It can affect at the cellular level to cause mitochondrial dysfunction and can affect blood sugar and give symptoms like hypoglycemia. All of these problems affect your brain and nervous system. I have had diagnosed Seizure during one of many similar episodes not seen in A&E.

Doctors have no understanding of these issues and can only gauge by performing Blood Gas and D-Lactic assays which they are not likely to offer. The Overgrowth itself should be identified and can be monitored to understand the effects of different interventions.

The problem is that D-Lactic acidosis has been deemed a rare disorder and mainly due to 'short bowel syndrome'. I no longer believe that it is rare or only due to 'short bowel syndrome'. My belief is that it can be caused by a number of different diseases and medications eg. Antibiotics alone can cause Bacterial Overgrowth through selecting through resistance and decimation of other symbiotic colonies (that may not be able to cope with the number of variables provided by modern living which includes high levels of starches and antibiotics). We are fall out in slow adaptation process that has taken many millennium to adapt such a complex symbiosis, but there is still hope and the possibility of Fecal Transplant, which has already been used successfully in a number of patients with ME/CFS!

I believe that D-Lactic acidosis may be behind a number of deaths because it can be fatal and during an extreme exacerbation affects abnormal heat rates and tachyarrhythms in patients who may have already been weakened for many years. The symptoms can affect any organ and cause not only systemic neurological symptoms but mitochondrial dysfunction.

See the different case reports online for treatment of D-Lactic acidosis including Birmingham Children's Hospital and the use of Probiotics and Fecal Transplant to reverse the symptoms.
https://www.researchgate.net/deref/http://adc.bmj.com/
https://www.researchgate.net/deref/http://group.bmj.com/
Paul.
 

Avenger

Senior Member
Messages
238
Likes
354
Hi Wayne,
I remembered that you had similar Gastrointesinal Issues?

I am now using Naltrexone. It is used as a prokinetic at low dosage (0.5 to 3 mg per day, taken in the morning).

It has been used for similar Gastrointestinal issues and is greatly helping me.

I have been able to come off my diet, but I am also using a number of non-D-Lactic producing Bacteria also (alternating).

This is still experimental, because I crashed using Probiotics alone.

Naltrexone is the new wonder drug (formerly used for alcoholism) but at low dosage it has been used for MS and a number of other illness's as well as SIBO and I am now given it on prescription.

I have had the longest period without serious symptoms. There have been no side effects apart from feelings of euphoria!

I am trying for a Fecal Transplant, to reverse the condition, but may not need it!


Paul.
Hi,

how is it diagnosed? are there other ways than elimination diet?
Email from Professor Malcolm Hooper, Emeritus Professor of Medicine at Sunderland University;
There are number of ways of controlling D-La and Bacterial Overgrowth. I asked the same questions; I forgot about this email from 2017;

It is necessary to understand that treatment can be complex and individual, depending on underlying causation's. There are many Consultant Gastroenterologist's who have not been trained to understand these issues, so do not become disappointed if you do not achieve the investigations necessary to diagnose SIBO or D-La. You will get there in the end.

Dear Paul,

Thank you for your kind email.
In answer to your questions.
1. There is a well known paradigm for addressing gut dysbiosis
a. Remove - that is remove from the deit anything known to provoke symptoms- I think you have identified your problem with carbohydrates- this would probably not include those known not to be digested
such as fiber in a high fiber diet.
Is there anything else you are aware of?
2. Replace- this refers to the normal enzymes that are required for digestion- lipases, proteinases/peptidases, and amylases which handle fats, proteins and carbohydrates. Some products are available and can be given on prescription, e.g. Creon. if judged necessary. This may not be the case for you.
3. RE-inoculate with gut microflora and fauna. Various products are available - again some on prescription e.g. VSL3. Unfortunately this contains numerous lactobacilli and would probably not help. However there is a product that contains ONLY bifidobacteria, B. infantis, which may be OK. It is called AL|IGN AND IS AVAILABLE ON LINE https://www.aligngi.com/en-us/shop-probiotics/align-probiotic-supplement. Yakult also appears to contain bifidobacteria but the levels are probably not high enough to make a significant difference.
It is against this background that the use of drug treatment needs to be considered.
There are several options.
a. Nystatin an early drug which ONLY remains in the gut would be OK but resistance seems to be developing. It is cheap and has few if any systemic effects. Would be worth a try.
b. One of the new orally systemically active triazoles would be my first recommendation if nystatin fails.
Fluconazole is the first drug in this category but more recent ones include itraconazole, and variconazole. My advice would be to use fluconazole first- seems to be the best tolerated. There is some indication of resistance developing so it needs to be carefully monitored for this possiblity.
Your doctor may have more up to date information.
VERY IMPORTANT IS THE CONCOMITANT USE OF PROBIOTICS WITH ANY OF THESE DRUGS. OTHERWISE THE GUT WILL BECOME UNBALANCED AND UNDESIRABLE ORGANISM ACCUMULATE eg. E.coli.
4. Prebiotics may be helpful later on - these provide ‘food’ for gut bacteria and include FOS- fructooligopolysaccharides and butyrates.
5. Helpful other dietary /natural medicines that kill yeasts include - garlic, caprylic and undecylenic acid but not oregano.

A possible treatment your doctor may know about is the use of “killer yeast” this best known is Saccharmyces boulardii a variant of S cervisieae ( the yeast used in brewing). Its use seems counter intuitive but it produces toxins that kill off a number of gut organisms including Candida app and then dies itself- DIE OFF is common and needs to be recognised in any follow up needed.

WARNING - IT IS IMPORTANT TO RECOGNISE THAT A LARGE CANDIDA INFECTION WHEN TREATED CAN GIVE RISE TO A “DIE OFF” RESPONSE WHICH IS AN EXTENSIVE ALLERGIC REACTION ( OFTEN SEEN AS AN URTICARIA REACTION) DUE TO THE LARGE NUMBERS OF PROTEINS AND OTHER CELLULAR COMPONENTS RELEASED FROM DYING CANDIDA CELLS.


Dear Professor,
I agree with you. But I tried to keep it as simple as possible. I am hoping to force them to investigate the possibility that at least a subset of CFS/ME may have similar problems and possibly many more. Even if this opens the door for a few it will be a victory and show that NHS policy has failed and may open the door further for others with alternative causation's.

If I had been forced to exercise while having D-Lactic symptoms, it could have made me very unwell or worse. If I had been given the surgery as planned before D-Lactic diagnosis it could have been fatal. If they concede this then they must concede the possibility that CBT/GET was wrong and potentially dangerous.

You gave me the idea yourself during conversation concerning 'Auto Brewery' and fermentation and this led me to D-Lactic accumulates, which may hopefully be the missing link for CFS/ME between SBBO and serious Neurological illness. SBBO is now very common and can cause abnormal fatigue, malabsorption and Hypoglycaemia/Blood Sugar fluctuations. SBBO may also be due to growing resistance to overused antibiotics and changes induced caused to Gut Flora due to the flood of antibiotics used in agriculture and overuse (as well as pesticides and chemicals).

I had read your report 'What is ME, What is CFS' and this has helped me enormously. It also gave me courage to fight against something that could only be wrong.

My courage came from you and so did much of what I needed in terms of understanding and I am extremely grateful.

I am expecting Resistance from the NHS, but will keep fighting.​
 

ljimbo423

Senior Member
Messages
3,497
Likes
8,566
Location
United States, New Hampshire
3. RE-inoculate with gut microflora and fauna. Various products are available - again some on prescription e.g. VSL3. Unfortunately this contains numerous lactobacilli and would probably not help. However there is a product that contains ONLY bifidobacteria, B. infantis, which may be OK. It is called AL|IGN AND IS AVAILABLE ON LINE
There is a website that sells D-lactate free probiotics and also single strains of Bifdobacteria, in very high doses. This is the link to the D-lactate free probioic- https://www.customprobiotics.com/d-lactate-free-probiotics.html

If you look under products you will see a vast assortment of Bifidobacteria available too.
 
Messages
51
Likes
38
oh wow, I just saw these replies since I last wrote on Sept 20th!

Honestly don't know why I keep missing stuff, but hopefully will get my head round it from now on! I think I wasn't subscribed to this thread or something?

thank you all, will be reading now ;)

EDIT:
The next stage is to find the cause of Overgrowth and get motility investigations; but there are many other causes of Overgrowth including Diabetes (interestingly linked to the same Starches/Carbohydrates causing D-Lactic acidosis).
In general my approach as to cause is around my complex drug history, and liver damage.

I was given nefazadone which has been now discontinued due to liver damage effects. I developed jaundice after using it in my very late teens. Apparently I have Gilbert's Syndrome but I believe this was triggered by that toxic med...

I have a long drug history so my liver is no doubt in poor shape. My best guess is that it's at least a large factor, and then any effects from dysbiosis are multiplied and possibly compounded.

I've used antibiotics 3 times according to my NHS records. I also had a gut trauma when my family first returned to Eastern Europe in mid 90s for a "holiday". A rare condition where my bowel twisted up, but while it was operated on it was left intact, but the small piece that connects umbilical cord to main bowel (normally goes away after birth) was removed. Also appendix removed... which we now know is important for microbe health.

In mid/early twenties some other gut trauma associated with stress from study. I was put on PPIs etc and it resolved, but black tar stools and terrible gut pains and zero sleep.


So, liver and gut history bad. Can't really guess properly at cause but I guess both is a fair shout. My hope is that neither are badly damaged for the long haul if I can solve the SIBO/dysbiosis. I don't like reading about hepatic encephalopathy because it feels like it rings bells for me, but then again, if we're talking about d-lactate, it doesn't sound a far stretch to imagine it's implicated in HE.

The other day I was watching a youtube channel and someone said "I bet they're a scientist".... I actually googled scientist because I forgot what it was! I thought they were talking about some new political identity. Talk about neuro issues! :D
 
Last edited:

kangaSue

Senior Member
Messages
1,606
Likes
2,362
Location
Brisbane, Australia
I also had a gut trauma when my family first returned to Eastern Europe in mid 90s for a "holiday". A rare condition where my bowel twisted up, but while it was operated on it was left intact, but the small piece that connects umbilical cord to main bowel (normally goes away after birth) was removed.
It's possible in this scenario to also have some degree midgut malrotation and to be causing SMA Syndrome. The GI dysmotility that goes with this often leads to causing SIBO too.
 
Messages
51
Likes
38
It's possible in this scenario to also have some degree midgut malrotation and to be causing SMA Syndrome. The GI dysmotility that goes with this often leads to causing SIBO too.
OK thanks

I had an endoscopy and colonoscopy a few months ago.

Would something like this be noticed or could it be too subtle?
 
Messages
51
Likes
38
ooooh, looky here, not only is this a d-lactate free multi strain probiotic, it's made by serious people who have even written their own paper on treating d-lactic acidosis with it:

https://pediatrics.aappublications.org/content/pediatrics/early/2018/08/06/peds.2018-0337.full.pdf

https://spectrumceuticals.com/shop/...ctate-free-multistrain-probiotic-60-capsules/


The 2 others I've found are either obscure about what exact strains they contain, and have no studies like this. It also contains Rhamnosus GG which has been studied quite a lot.

other 2 here:

https://organic3.com/supplements/probiotics/gutpro/

https://www.customprobiotics.com/d-lactate-free-probiotics.html
 

Stretched

Senior Member
Messages
649
Likes
784
Location
U.S., Atlanta, GA
@Avenger So, after skimming this thread I’d presume you’re claiming you’re ’cured’ re MECFS?

I had and endoscopy 2 years ago pursuant to reflux. The Gasro MD found a case of mild acidosis. She advised continuing taking PPI, Pantoprazole. She knew I had MECFS but did not connect any dots. Admittedly, she wasn’t the brightest star in the sky but it seems to me that she, with an active metropolitan practice and mid-career commitment would have seen some cross referenced literature... . Nevertheles, I take pre and pro biotics
(and others, e.g. caraway and O-3’s) for help with bloating.

I don’t know about your theory having broad implications but have studied the related research and more literature for my 30+ years as a PWC. The closest I can feel the CFS is acidosis related is the Columbia research and gut biome work there by Dr. Lipkin (Spell)?

IAE, I think with enough fervor one could use various tomes of research and anecdotal literature to support a claim that almost any related CFS alleged causal hypotheses is THE cause of this malaise. The Problem is that they don’ hold up across ‘n’, i.e. correlations diminish as ’n’ increases.

Hopefully, you can stimulate some DBPC studies for the rest of us. Best of luck treating your condition; maybe others who fall in a similarly afflicted class will get some relief through your protocols.
 

kangaSue

Senior Member
Messages
1,606
Likes
2,362
Location
Brisbane, Australia
OK thanks

I had an endoscopy and colonoscopy a few months ago.

Would something like this be noticed or could it be too subtle?
An endoscopy may see a lot of food residue still in the stomach after an overnight fast for this test. They don't usually go any further than the first portion of the duodem unless they are doing a push enteroscopy to have a look at the small intestine but if the did so, may encounter some difficulty advancing the scope through the third portion of the duodenum when you have SMA Syndrome.

SMA Syndrome can be a cause of transient symptoms and may only be compressing the duodenum when you are upright and can take having imaging done while you are upright too may be the only time it is seen.
An Upright Barium Swallow Test with Small Bowel Follow Through is the more easily available test to be arranged for this. CTA or MRA imaging will most often show an abnormally narrowed angle for the junction of the aorta and superior mesentery artery though and something you could work out for yourself if you have these imaging results on disc and googling "normal sma angle" to see what to look for
(one paper to start with;
https://pubs.rsna.org/doi/10.1148/rg.341125010 )
 

Stretched

Senior Member
Messages
649
Likes
784
Location
U.S., Atlanta, GA
Hopfully, this might contribute some helpful ideas:

Columbia Study Finds Chronic Fatigue Syndrome Linked to Imbalanced Microbiome

Scientists at the Center for Infection and Immunity (CII) at Columbia University’s Mailman School of Public Health have discovered abnormal levels of specific gut bacteria related to chronic fatigue syndrome/myalgic encephalomyelitis, or ME/CFS, in patients with and without concurrent irritable bowel syndrome, or IBS. Findings are published in the journal Microbiome.

The study is among the first to disentangle imbalances in the gut bacteria in individuals with ME/CFS and IBS... . Up to 90 percent of ME/CFS patients also have IBS.

The researchers followed 50 patients and 50 matched healthy controls recruited at four ME/CFS clinical sites. They tested for bacterial species in fecal samples, and for immune molecules in blood samples... .
 
Last edited:
Messages
51
Likes
38
OK so d-lactate free from custom is making me feel warm and fuzzy for around 3 hours, but then goes away.

Mutaflor improved my mood

S. Boulardii + MOS did similar

Bimuno, not sure yet

All started gradually this week, will report back any significant changes to acidosis type symptoms. For now I've become constipated and had sore throat, big changes in gut clearly.


I now have some new ideas on what's next, but keeping it simple for now ;)

Have also met another Symprove neuro victim, she's lost 3 years, and she knows of 2 others.
 

Howard

suffering ceases when craving is removed
Messages
1,101
Likes
5,204
Location
Arizona
Other thing is that I actually reacted to bicarb very strangely when I tried to help myself last relapse phase. I slowly sipped less than 1/2 a teaspoon in water over an hour on an empty stomach when I was in a bad multi week phase (also triggered by aggressive use of probiotics in Rhythm Kefir drink). Some notes I wrote later follows:

- wave of disorientation
...
- fear response (sudden effects in body generally give me fear response
I'm not sure if this is in any way applicable, but..


Sodium Bicarbonate

I'd never read of anyone else having a strong reaction to sodium bicarbonate, so I thought I'd chime in here.

I don't have the technical expertise to explain why it happens, or the research capabilities to do the same, but I'll give a brief explanation in case it helps you, or someone else.

Fifteen years ago out of the blue, even before I had knowingly become ill, I had an experience where I was inundated with waves of disorientation and debilitating fear while at work.

Paramedics were called in and I was transported to ER. Of course, they found nothing. And I had no history for such things, especially the intense fear that seemingly came out of nowhere.

Long story short, the only new thing added to my diet within a reasonable time frame was Nestle's bottled water, which contained sodium bicarbonate. And at the time of the incident I'd drank a full cases worth within the previous three or four days time.

The next day I had a couple of bottles of Nestle water to test out my theory and the same thing happened. So that's when I figured it out.

I began purposely avoiding sodium bicarbonate. But three years later I ingested some gluten-free donuts. Pretty much the whole package. And the same thing happened again. I hadn't realized sodium bicarbonate was commonly utilized in gluten-free foods.

Two years after that, and again the same thing. This time with pretzels. Gluten-free. I didn't notice the sodium bicarbonate on the label.

Keep in mind, it seems to take a while for the sodium bicarbonate to build up enough to cause a reaction. At least, it's not the initial tasting and ingesting that causes the issue.

When I originally became ill, I used to bring this to the attention of doctors before realizing they would automatically start tuning out whenever I'd mention such things, immediately pushing me towards a variety of psych meds as a means to resolve the issue. As one would expect, I don't dare mention this strange reaction to sodium bicarbonate anymore.

Elimination

Not necessarily related to this, but I've long suspected d-lactic acidosis, but haven't received formal confirmation from the medical community based on blood work / urine samples etc. I have, however, altered my diet to the extent that I've eliminated most if not all carbs and starches, as well as simple sugars, and especially high fructose corn syrup.

My energy levels have been gradually increasing in the past two years, probably because of the elimination diet undertaken, and a dramatic increase in my vitamin D levels, as well as other factors.


H
 

Judee

Senior Member
Messages
1,439
Likes
3,475
Location
Great Lakes
I don't do well on sodium bicarb either. I can have it in some things but taking it straight or having a product that relies on it heavily like Irish Soda Bread, makes me feel yuck.

Someone recommended using it to test stomach acid levels and I felt horrible after trying the test. I passed the acid test so no problem there but still felt awful from doing the test for many hours afterward.