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

lenora

Senior Member
Messages
4,989
Thanks @gregh286 286 for the great explanation, but I have to confess that I got lost somewhere along the way.

I'll have another go at this at some point....and will hope to take a little more in. Yours, Lenora
 

Avenger

Senior Member
Messages
323
Hi avenger
Did you ever try lactoferrin powder in healthy moderate doses.
I find it #1 way better than probio etc to control 'whatever grows wrong in gut'. I can relate a lot to your symptoms. High BP....racing heart...bad reactions.to carbs etc..
I can control it well with lacto and modified diet....little and often eating etc..etc....
My serum lactate level was continually hig about x3 max from prior testing. (Although this can arose from anaerobic metabolism)

POSSIBLY MY MOST IMPORTASNT FIND SO FAR; THE EFFECTS SODIUM BICARBONATE ON, THE MICROBIOME, BACTERIAL INFECTIONS AND ANTIBIOTCS EVEN BIOFILM!

SODIUM BICARBONATE HAS THE POTENTIAL TO INCREASE POTENCY OF ANTIBIOTICS AND EVEN EXTEND RESISTANT ANTIBIOTIC USE BY SENSITIZATION OF MEMBRANE POTENTIAL IN GRAM NEGATIVE BACTERIA!

BICARBONATE ALSO ALTERS BACTERIAL SUSCEPTABILITY TO ANTIBIOTCS BY TARGETING THE PROTON MOTIVE FORCE IN GRAM POSITIVE BACTERIA ACCORDING TO PUB MED.

BICARBONATE INHIBITS BACTERIAL GROWTH AND BIOFILM PRODUCTION AND CAN EVEN BE USED AS A MOUTH WASH; SO MUCH POTENTIAL!


Hi Wayne,
just saw you post, so will definitely try some Lactoferrin. I have just found something similar the most simple and cheap substance that I am now taking with Antibiotics that had failed due to resistance!

I have been experimenting with a lot of different Antimicrobials, knowing that at some point my Antibiotics may fail due to Antibiotic Resistance. I started to fail to respond to antibiotics some months ago and have had to revisit old antibiotics that may or may not work.

I had reached the bottom of the barrel, but purchased some Sodium Bicarbonate to see if it would have an effect in increasing my Gut PH to reduce the Bacteria causing my illness.

I started using it with old Antibiotics, some that had not worked at all in desperation and suddenly found that a number of antibiotics had started working again! I have to continue to trial this and there are some dangers if you take too much, so do not use without seeking medical advice first!

I am using minimum dosage and only while using Antibiotics; SODIUM BICARBONATE IS DANGEROUS IF YOU TAKE TOO MUCH AN CAN CAUSE INCREASED BLOOD PRESSURE SO PLEASE SEEK ADVICE BEFORE USING! TRY MINIMUM DOSAGE AND ONLY AFTER TALKING TO A DOCTOR.

The recommended dosage on the packet is to take one or two, 2 to 3 times a day. I have only needed to take One with my Antibiotics 4 times a day! I only aim to use the minimum dosage that works it while taking Antibiotics and see how long the remission period will be for. I am still experimenting, but this could help people in a similar situation of Antibiotic Resistance which apparently is coming for all of us (it is being passed through our foods and even our pets) so this may be very useful in the future.

There is so much information; just put in Keyword Search SODIUM BICARBONATE USED WIYH ANTIBIOTICS OR EFFECTS ON GRAM NEGATIVE AND GRAM POSITIVE BACTERIA.

If you find out more please contact me or any similar such as lactoferrin; but Sodium Bicarbonate seems to be extending dead Antibiotics for me so far.

I am still waiting for FMT. Could anyone give me the contact for Groups doing FMT Trials etc.
 

Wayne

Senior Member
Messages
4,387
Location
Ashland, Oregon
I have been experimenting with a lot of different Antimicrobials, knowing that at some point my Antibiotics may fail due to Antibiotic Resistance. I started to fail to respond to antibiotics some months ago and have had to revisit old antibiotics that may or may not work. -- If you find out more please contact me...

Hi @Avenger,

I recently starting doing a lot of research and experimentation with methylene blue, and one of the things I discovered was it has quite a track record for being a remarkable antimicrobial. I finally started a thread on some of my experience this past week entitled, Methylene Blue -- The "Perfect Supplement" For ME/CFS (?).

The link takes you to a post I made where a guy who frequently got urinary tract infections (UTIs) was able to stop them completely by using only 3 drops daily of Methylene Blue daily. I think that's just an amazing testimonial. I then ran across an article entitled, "Methylene Blue: Understanding the Possible Uses, Benefits, and Risks".

Below is the last section in the article. Get a load of the very last sentence. I think there's a good chance MB could be something worthwhile for you to consider as you deal with some of your antibiotic resistant issues. -- Best!

Is methylene blue being studied for any other uses?

Researchers are looking into whether methylene blue can be used for other conditions. This includes:​
  • Alzheimer’s disease: Researchers are looking into methylene’s potential to slow memory loss in people with Alzheimer's dementia.
  • Memory loss: Even outside of dementia, methylene blue’s antioxidant activity may help age-related damage that occurs over time.
  • Lyme disease: Researchers looked at medications that kill the bacteria that causes Lyme disease. In a lab, methylene blue was effective at killing antibiotic-resistant bacteria.
 

Aidan Walsh

Senior Member
Messages
373
POSSIBLY MY MOST IMPORTASNT FIND SO FAR; THE EFFECTS SODIUM BICARBONATE ON, THE MICROBIOME, BACTERIAL INFECTIONS AND ANTIBIOTCS EVEN BIOFILM!

SODIUM BICARBONATE HAS THE POTENTIAL TO INCREASE POTENCY OF ANTIBIOTICS AND EVEN EXTEND RESISTANT ANTIBIOTIC USE BY SENSITIZATION OF MEMBRANE POTENTIAL IN GRAM NEGATIVE BACTERIA!

BICARBONATE ALSO ALTERS BACTERIAL SUSCEPTABILITY TO ANTIBIOTCS BY TARGETING THE PROTON MOTIVE FORCE IN GRAM POSITIVE BACTERIA ACCORDING TO PUB MED.

BICARBONATE INHIBITS BACTERIAL GROWTH AND BIOFILM PRODUCTION AND CAN EVEN BE USED AS A MOUTH WASH; SO MUCH POTENTIAL!


Hi Wayne,
just saw you post, so will definitely try some Lactoferrin. I have just found something similar the most simple and cheap substance that I am now taking with Antibiotics that had failed due to resistance!

I have been experimenting with a lot of different Antimicrobials, knowing that at some point my Antibiotics may fail due to Antibiotic Resistance. I started to fail to respond to antibiotics some months ago and have had to revisit old antibiotics that may or may not work.

I had reached the bottom of the barrel, but purchased some Sodium Bicarbonate to see if it would have an effect in increasing my Gut PH to reduce the Bacteria causing my illness.

I started using it with old Antibiotics, some that had not worked at all in desperation and suddenly found that a number of antibiotics had started working again! I have to continue to trial this and there are some dangers if you take too much, so do not use without seeking medical advice first!

I am using minimum dosage and only while using Antibiotics; SODIUM BICARBONATE IS DANGEROUS IF YOU TAKE TOO MUCH AN CAN CAUSE INCREASED BLOOD PRESSURE SO PLEASE SEEK ADVICE BEFORE USING! TRY MINIMUM DOSAGE AND ONLY AFTER TALKING TO A DOCTOR.

The recommended dosage on the packet is to take one or two, 2 to 3 times a day. I have only needed to take One with my Antibiotics 4 times a day! I only aim to use the minimum dosage that works it while taking Antibiotics and see how long the remission period will be for. I am still experimenting, but this could help people in a similar situation of Antibiotic Resistance which apparently is coming for all of us (it is being passed through our foods and even our pets) so this may be very useful in the future.

There is so much information; just put in Keyword Search SODIUM BICARBONATE USED WIYH ANTIBIOTICS OR EFFECTS ON GRAM NEGATIVE AND GRAM POSITIVE BACTERIA.

If you find out more please contact me or any similar such as lactoferrin; but Sodium Bicarbonate seems to be extending dead Antibiotics for me so far.

I am still waiting for FMT. Could anyone give me the contact for Groups doing FMT Trials etc.
I was just diagnosed this week in the Emergency room with (PND) Paroxysmal Nocturnal Dyspnea/Orthopenia/Dyspnea most of the time it is the heart involved some can be anemia.

I think they mentioned also Acid reflux, there is a long list of illnesses mentioned. Maybe there are some meds on there to help. I need to find out where to test for this bacteria mentioned above I am in Southampton, UK is this available or not on the NHS system or only special places do this test D-Lactate Acidosis? thank you

Also, a study came out of Tulane Hypermobility Clinic published in April methyl folate issues using methyl folate & methyl B12 they believe it is a cause. Avoid gluten food because they have synthetic folic acid do not consume folic acid, also Rice & all Sugar. Vitamins/Minerals the majority have synthetic folic acid do not use these. FOLATE DEFICIENCY is posted below. One can also use instead of MethylFolate try Folinic Acid, not folic acid
 

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Last edited:

Avenger

Senior Member
Messages
323
Hi avenger
Did you ever try lactoferrin powder in healthy moderate doses.
I find it #1 way better than probio etc to control 'whatever grows wrong in gut'. I can relate a lot to your symptoms. High BP....racing heart...bad reactions.to carbs etc..
I can control it well with lacto and modified diet....little and often eating etc..etc....
My serum lactate level was continually hig about x3 max from prior testing. (Although this can arose from anaerobic metabolism)

POSSIBLY MY MOST IMPORTASNT FIND SO FAR; THE EFFECTS SODIUM BICARBONATE ON THE MICROBIOME, BACTERIAL INFECTIONS AND ANTIBIOTCS!

SODIUM BICARBONATE HAS THE POTENTIAL TO INCREASE POTENCY OF ANTIBIOTICS AND EVEN EXTEND RESISTANT ANTIBIOTIC USE BY SENSITIZATION OF MEMBRANE POTENTIAL IN GRAM NEGATIVE BACTERIA IN THE GUT!

BICARBONATE ALSO ALTERS BACTERIAL SUSCEPTABILITY TO ANTIBIOTCS BY TARGETING THE PROTON MOTIVE FORCE IN GRAM POSITIVE BACTERIA ACCORDING TO PUB MED.

BICARBONATE INHIBITS BACTERIAL GROWTH AND BIOFILM PRODUCTION AND CAN EVEN BE USED AS A MOUTH WASH; SO MUCH POTENTIAL!


Hi Wayne,
thank you. I just saw your post, so will definitely try some Lactoferrin. What is a trial dosage?

I have just found something of possibly great benefit; the most simple and cheap substance, Sodium Bicarbonate, that I am now taking with Antibiotics that had failed due to resistance that seem to be working again! But need to trial this much longer and see if there are any side effects.

I have been experimenting with a lot of different Antimicrobials, knowing that at some point my Antibiotics may fail due to Antibiotic Resistance. I started to fail to respond to antibiotics some months ago, remaining unwell even using low fermenting foods; and have had to revisit old antibiotics that may or may not work, but have found that they seem to work again when combined with Sodium Bicarbonate (the only drawback is the Sodium, but I am going to try other forms of Bicarbonate to see if they have the same properties).

This was a chance in a million find as it seems to be working so far;
I had decided to see if altering my PH in my Gut would affect the still unidentified Bacteria causing D-lactic acidosis. I have been using a Low fermenting diet but now realise that it was mainly Antibiotics that were stopping my main symptoms; The Low Fermenting diet only reduces my symptoms and the fatigue even after pottering has been so bad later in the day that it feels like I have climbed a very high mountain without oxygen (I am prone to pushing myself and get delayed symptoms after any activity). As resistance worsened some months ago, I started to become ill just days after taking antibiotics then failing altogether and ended up ill most of the time.

I had reached the bottom of the barrel, but purchased some Sodium Bicarbonate to see if it would have an effect in increasing my Gut PH to reduce the Bacteria causing my illness. I still have to trial it for other side effects including raised BP, but only intend to use it with Antibiotics.

I started using Sodium Bicarbonate with old Antibiotics, some that had not worked at all in desperation and suddenly found that a number of antibiotics had started working again! I have to continue to trial this and there are some dangers if you take too much, so do not use without seeking medical advice first!

I am using minimum dosage and only while using Antibiotics; SODIUM BICARBONATE IS DANGEROUS IF YOU TAKE TOO MUCH AN CAN CAUSE INCREASED BLOOD PRESSURE SO PLEASE SEEK ADVICE BEFORE USING!

The recommended dosage on the packet is 600mg, one or two capsules two or three times a day, but I am using only 3 to 4 capsules a day and only when taking antibiotics. I wonder if it could be used along with the properties of Lactoferrin? But Sodium Bicarbonate is sold in much higher capsule dosages; I still need to find out what the minimum dosage is to reduce any unwanted side effects.

As Bicarbonate is used intravenously (for D-lactic acidosis), I was wondering if it could be given along with Antibiotics for specific blood infections, using Bicarbonate to allow the breakdown of both Gram Positive and Gram Negative membranes to allow Antibiotics to do their work. From what I have read Bicarbonate is a ''Selective dissipator of the Ph gradient of the proton motive force across the cytoplasmic membrane of both Gram Positive and Gram Negative bacteria''.

There is could be a game changer for Antibiotic Resistance at the very least for specific Gut infections.
 

Aidan Walsh

Senior Member
Messages
373
Bhupesh Prusty posted a paper abstract just published to his Twitter link, fibronectin issues, re-activated HSV1 & EBV & also natural deficient IGM...The world is not replicated yet but likely stands up to any rejections, he also mentions clinical trials for treatments. I think IVGG Gamma Globulin is used in natural IGM issues. Robert Naviaux, San Diego also involved so is the German Immunologist/Oncology Dr. Carmen Scheibenbogen
 

Avenger

Senior Member
Messages
323
POSSIBLY MY MOST IMPORTASNT FIND SO FAR; THE EFFECTS SODIUM BICARBONATE ON, THE MICROBIOME, BACTERIAL INFECTIONS AND ANTIBIOTCS EVEN BIOFILM!

SODIUM BICARBONATE HAS THE POTENTIAL TO INCREASE POTENCY OF ANTIBIOTICS AND EVEN EXTEND RESISTANT ANTIBIOTIC USE BY SENSITIZATION OF MEMBRANE POTENTIAL IN GRAM NEGATIVE BACTERIA!

BICARBONATE ALSO ALTERS BACTERIAL SUSCEPTABILITY TO ANTIBIOTCS BY TARGETING THE PROTON MOTIVE FORCE IN GRAM POSITIVE BACTERIA ACCORDING TO PUB MED.

BICARBONATE INHIBITS BACTERIAL GROWTH AND BIOFILM PRODUCTION AND CAN EVEN BE USED AS A MOUTH WASH; SO MUCH POTENTIAL!


Hi Wayne,
just saw you post, so will definitely try some Lactoferrin. I have just found something similar the most simple and cheap substance that I am now taking with Antibiotics that had failed due to resistance!

I have been experimenting with a lot of different Antimicrobials, knowing that at some point my Antibiotics may fail due to Antibiotic Resistance. I started to fail to respond to antibiotics some months ago and have had to revisit old antibiotics that may or may not work.

I had reached the bottom of the barrel, but purchased some Sodium Bicarbonate to see if it would have an effect in increasing my Gut PH to reduce the Bacteria causing my illness.

I started using it with old Antibiotics, some that had not worked at all in desperation and suddenly found that a number of antibiotics had started working again! I have to continue to trial this and there are some dangers if you take too much, so do not use without seeking medical advice first!

I am using minimum dosage and only while using Antibiotics; SODIUM BICARBONATE IS DANGEROUS IF YOU TAKE TOO MUCH AN CAN CAUSE INCREASED BLOOD PRESSURE SO PLEASE SEEK ADVICE BEFORE USING! TRY MINIMUM DOSAGE AND ONLY AFTER TALKING TO A DOCTOR.

The recommended dosage on the packet is to take one or two, 2 to 3 times a day. I have only needed to take One with my Antibiotics 4 times a day! I only aim to use the minimum dosage that works it while taking Antibiotics and see how long the remission period will be for. I am still experimenting, but this could help people in a similar situation of Antibiotic Resistance which apparently is coming for all of us (it is being passed through our foods and even our pets) so this may be very useful in the future.

There is so much information; just put in Keyword Search SODIUM BICARBONATE USED WIYH ANTIBIOTICS OR EFFECTS ON GRAM NEGATIVE AND GRAM POSITIVE BACTERIA.

If you find out more please contact me or any similar such as lactoferrin; but Sodium Bicarbonate seems to be extending dead Antibiotics for me so far.

I am still waiting for FMT. Could anyone give me the contact for Groups doing FMT Trials etc.
Hi Aidan and Wayne,
I am still in remission after using Sodium Bicarbonate with old antibiotics that I have become resistant to!

I am still awaiting FMT, but I have had one of the longest periods of remission for over a year. I was pretty unwell most of the time with increasing failure of antibiotics.

I am not sure if this will affect only D-lactic acidosis, but all the reports are that Sodium Bicarbonate breaks down Bacterial cell walls and destroys Biofilms. So it should work for other forms of Bacterial Overgrowth allowing antibiotics to work.

But I have finished my antibiotics and have purchased a Gut Health Probiotic some weeks ago; but had to increase the number of capsules.
 
Last edited:

Aidan Walsh

Senior Member
Messages
373
Avenger, do you know anywhere in the UK that does the test for D Lactate Private lab here? I am in Southampton, UK Are you Negative for Toxoplasmosis some German Doctor internist claims it is the cause & the blood diagnostic test is not accurate, he created a symptom checklist of symptoms he goes by now?

They now say my heart is abnormal they saw an aneurysm on a CT Contrast scan with also mucus buildup & said (PND) Paroxysmal Nocturnal Dyspnea/Orthopnea which is a form of heart failure, the heart cannot clear the mucus one suffocates sleeping.

Glad you are in remission now can you do anything now like fully exercise, etc? How much Sodium Bicarbonate did you take daily & brand name? Was it mixed in water?
 

Avenger

Senior Member
Messages
323
There is nowhere other than NHS for a D-lactic assay. They have only one Laboratory in Birmingham Children's Hospital. But please read further on;

I will look into Toxoplasmosis. I had bad apnoeas and hypopneas with long periods stopping breathing when I first fell ill. The Bacteria causing my symptoms have still not been identified. I used 500mg capsules, but I could only obtain 800mg capsules on my second purchase, taken with the antibiotic (I will need to check on the make of Bicarbonate). My D-lactic symptoms have stopped but I still cannot recover after activity, but there is a huge difference. I can put up with not recovering normally but not the D-lactic symptoms, but it is early days yet. I do not think that this may be a permanent fix, because it only takes a few Bacteria possibly protected in something like diverticulum, but I at least have a way of overcoming Antibiotic Resistance at present and this could be a potential life saver.

It is crazy, but I have tried to get a D-lactic assay myself privately without success since Biolab stopped doing this Assay. I have been allowed to have a D-lactic assay, but it has been very difficult. The first time I attended for a D-lactic assay, they put the wrong cap on my bloods which have to be separated to plasma and then frozen within one hour of an exacerbation.

I have had to remain ill for long periods for the Assay for over two years. In February 2021, I went in with symptoms that I videoed while there including slurred speech, but the Assay was not performed untill 18 hours after my symptoms had stopped the next day!

A few months ago I went in to be given Carbohydrates to produce D-lactate, but this time I had a mild exacerbation at mid week, but again was not given the test for two days after! Again 2 days too late! It was beginning to look as though someone did not want me to have a positive D-lactic assay.

But this time they threw in a Blood Gas investigation; I was lucky that I was still having mild but definite symptoms of dizziness with abnormal fatigue; this produced a Blood Gas Anion Gap acidosis of 20.3 which is positive.

The D-lactic assay test has to be performed within one hour of an exacerbation and is notoriously difficult because the symptoms of D-la are difficult because of the transience of symptoms that fluctuate and can stop or exacerbate, be bad for months or go into remission. Most exacerbations last approx 3 days; or it takes 3 days for your body to remove the Neurotoxins that could be found in spinal fluid.

This means that you have to have Carbohydrates and or Sugars load to make sure that you can capture the Organic Toxin at a peak and you symptomatic.

But there has been a massive backlash against me where I live, when the incorrectly performed D-lactic assay 18 hours too late was reported as there being no sign of my having D-lactic acidosis in February 2021. Some Local Doctors had jumped on me prematurely and made an attack! I am guessing that the NHS does not want me to get a D-lactic diagnosis, so I am guessing that this is partly an exercise in damage limitation, but I have made a lot of enemies since falling ill and just trying to survive.

I made complaints about being wrongly diagnosed with Somatization for the same symptoms as D-lactic acidosis and they have replaced Somatization back in my records at the very top even though I have had an Anion Gap Acidosis diagnosis along with high BP of 179/101 during mild symptoms as well as Low temperature (also autonomic dysfunction).

I have just found that my Medical History has been altered again from the annotation that my symptoms are not Somatic back to Somatization disorder in 2017 when I first reported to Phoenix Rising (I was diagnosed with Somatization disorder for the same symptoms when illness began 20 years ago along with ME CFS and Fibromyalgia). Professor Malcolm Hooper states that ME patients are frequently given a Somatization diagnosis. Once you get a Somatization diagnosis it acts prejudicially against further investigations.

I have even been threatened, my neighbours contacted as part of a hate crime and told that I did not have a diagnosis! Someone in the NHS has passed my personal NHS information to a number of people who I know including my neighbours . My dog was also poisoned and later died; the reason that I have not been back on Phoenix Rising is that I spent 7 months nursing her with a feeding tube in her neck due to the damage to her Gastrointestinal system. She died after a 7 month fight and I became badly depressed and too worried to post anything. But posting may be my best protection.

So I do not think that you will be given a D-lactic assay or diagnosis by the NHS. Biolab did this test, but have stopped because they have lost the technician who used to perform the tests. We need to find someone to do this privately en-mass, but from my reading there are other Bacteria, Archaea, Prokaryotes and Fungal infections etc. that can cause the same symptoms as D-lactate. I believe that we are looking at a variety of possible Organic acids due to a immune failure in conducting and controlling possible overgrowth and Low Bacterial Species, possibly both.

Going abroad may be the only solution as your Plasma has to be frozen, but you have to be at a peak of illness to guarantee the Assay being positive, so we are at the mercy of an NHS that wishes to make our symptoms purely psychological and sweep them neatly under a Somatic carpet.

We could get someone like Bhupesh Prusty to set up a Lab in the UK.? We could get funding or do this together or through one of the ME organisations? I would have thought that these investigations would have been crucial to so many ME/CFS with Gastrointestinal symptoms.

D-lactate can be found in urine, but the only tests that can be purchased are for D-lactic acid in things like food and beverages. You can buy test strips from QuantiQuick, but these would be set for high D-lactic values.


The Mayo Clinic may perform this Assay. But this means a prolonged stay in the US and deliberately making yourself ill to get this Assay, All near impossible. I was lucky to be given the Blood Gas Assay at just the right time.

I had frequent periods of breathing difficulty, especially prior to using antibiotics while diagnosed with ME/CFS (and Somatization disorder); the problem is that you can have normal levels of Oxygen during acidosis and be told that your Oxygen is normal; but suffocate because you cannot utilise normal oxygen levels due to increased C02 levels and D-lactic acid that causes autonomic and mitochondrial dysfunction and Doctors do not understand that you are really very unwell. I had a diagnosed Seizure during a bad episode; and now believe that this was a bad exacerbation.

It is not that all of your investigations are normal, but that they are performing the wrong investigations. Only specialised Assays will show Acidosis; most blood investigations during D-lactic acidosis are normal!

But this has never been all about exacerbations,; but fluctuating levels of symptoms. I have always become very unwell pushing myself to do activities even during mild symptoms, often becoming very unwell long after I have finished; with a delay before symptoms worsen.

The only way around this would be to get a Private Blood Gas Assay during bad symptoms; using Carbohydrates and Sugars to exacerbate without killing yourself. You would have to discuss this with a Private Gastroenterologist and ask for both a Hydrogen and Methane breath test to prove Bacterial Overgrowth and you would have 9/10ths the evidence for D-lactate. But having proof of Acidosis from a Blood Gas Assay without the presence of Lactic Acidosis would also indicate D-lactic acidosis.

It may be better to go to a totally Private Non-NHS.
 
Last edited:

Aidan Walsh

Senior Member
Messages
373
There is nowhere other than NHS. They have only one Laboratory in Birmingham Children's Hospital.

It is crazy, but I have tried to get this test myself privately. I have been allowed to have a D-lactic assay, but it has been very difficult. The first time I attended, they put the wrong cap on my bloods which have to be separated to plasma and then frozen within one hour of an exacerbation.

I had to remain ill for long periods for the Assay for two years. In February 2021, I went in with symptoms that I videoed while there including slurred speech, but the Assay was not performed untill 18 hours after my symptoms had stopped the next day!

A few months ago I went in to be given Carbohydrates to produce D-lactate, but this time I had a mild exacerbation at mid week, but again was not given the test for two days after! Again 2 days too late. It was beginning to look as though someone did not want me to have a positive D-lactic assay.

But this time they threw in a Blood Gas investigation; I was lucky that I was still having mild but definite symptoms of dizziness with abnormal fatigue; this produced a Blood Gas Anion Gap acidosis of 20.3 which is positive.

The D-lactic assay test has to be performed within one hour of an exacerbation and is notoriously difficult because the symptoms of D-la are difficult because of the transience of symptoms that fluctuate and can stop or exacerbate, be bad for months or go into remission. Most exacerbations last approx 3 days; or it takes 3 days for your body to remove the Neurotoxins that would be found in spinal fluid.

This means that you have to have Carbohydrates and or Sugars load to make sure that you can capture the Organic Toxin at a peak and you symptomatic.

But there has been a massive backlash against me where I live, when the incorrectly performed D-lactic assay 18 hours too late was reported as there being no sign of my having D-lactic acidosis in February 2021. Some Local Doctors had jumped on me prematurely and made an attack! I am guessing that the NHS does not want me to get a D-lactic diagnosis, so I am guessing that this is partly an exercise in damage limitation, but I have made a lot of enemies since falling ill and just trying to survive.

I made complaints about being wrongly diagnosed with Somatization for the same symptoms as D-lactic acidosis and they have replaced Somatization back in my records at the very top even though I had an Anion Gap Acidosis diagnosis along with high BP of 179/101 during mild symptoms as well as Low temperature (also autonomic dysfunction).

I have just found that my Medical History has been altered again from the annotation that my symptoms are not Somatic back to Somatization disorder in 2017 when I first reported to Phoenix Rising (I was diagnosed with Somatization disorder for the same symptoms when illness began 20 years ago along with ME CFS and Fibromyalgia). Professor Malcolm Hooper states that ME patients are frequently given a Somatization diagnosis.

I have even been threatened, my neighbours contacted as part of a hate crime and told that I did not have a diagnosis! Someone in the NHS had passed my personal NHS information to a number of people who I know including my neighbours . My dog was also poisoned and later died; the reason that I have not been back on Phoenix Rising is that I spent 7 months nursing her with a feeding tube in her neck due to the damage to her Gastrointestinal system. She died after a 7 month fight and I became badly depressed and too worried to post anything. But posting may be my best protection.

So I do not think that you will be given a D-lactic assay or diagnosis by the NHS. Biolab did this test, but have stopped because they have lost the technician who used to perform the tests. We need to find someone to do this privately en-mass, but from my reading there are other Bacteria, Archaea and Prokaryotes etc. that can cause the same symptoms as D-lactate. I believe that we are looking at a variety of possible Organic acids due to a immune failure in conducting and controlling possible overgrowth and Low Bacterial Species, possibly both.

Going abroad may be the only solution as your Plasma has to be frozen, but you have to be at a peak of illness to guarantee the Assay being positive, so we are at the mercy of an NHS that wishes to make our symptoms purely psychological and sweep them neatly under a Somatic carpet.

We could get someone like Bhupesh Prusty to set up a Lab in the UK.? We could get funding or do this together or through one of the ME organisations? I would have thought that these investigations would have been crucial to so many ME/CFS with Gastrointestinal symptoms.

D-lactate can be found in urine, but the only tests that can be purchased are for D-lactic acid in things like food and beverages. You can buy test strips from QuantiQuick, but these would be set for high D-lactic values.


The Mayo Clinic may perform this Assay. But this means a prolonged stay in the US and deliberately making yourself ill to get this Assay, All near impossible. I was lucky to be given the Blood Gas Assay at just the right time.

I had frequent periods of breathing difficulty prior to using antibiotics while diagnosed with ME/CFS (and Somatization disorder); the problem is that you can have normal levels of Oxygen during acidosis and be told that your Oxygen is normal; but suffocate because you cannot utilise normal oxygen levels due to increased C02 levels and D-lactic acid that causes autonomic and mitochondrial dysfunction and Doctors do not understand that you are really very unwell. I had a diagnosed Seizure during a bad episode; and now believe that this was a bad exacerbation.

This has never been all about exacerbations,; but fluctuating levels of symptoms. I have always become very unwell pushing myself to do activities even during mild symptoms, often becoming very unwell long after I have finished; with a delay before symptoms worsen.
Thanks, Did you have to Pay out of pocket for the D-Lactate test? I will look into those Strips for urine you mentioned. I was told the shortness of breath was not the oxygen it is the pulse-pounding highs to lows I guess another name best is low bradycardia to high tachycardia.

During my last EMERG visit my pulse was running below 50 to 157 I was lying down then I could not breathe at all. I get sick with sugar & carbs, I wonder if D-Lactate is involved in the Folate added to foods flour gluten FDA synthetic folic acid. I eat a simple sandwich I am asleep the same with Tuna macaroni out like a light
 
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Avenger

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Thanks, Did you have to Pay out of pocket for the D-Lactate test? I will look into those Strips for urine you mentioned. I was told the shortness of breath was not the oxygen it is the pulse-pounding highs to lows I guess another name best is low bradycardia to high tachycardia.

During my last EMERG visit my pulse was running below 50 to 157 I was lying down then I could not breathe at all. I get sick with sugar & carbs, I wonder if D-Lactate is involved in the Folate added to foods flour gluten FDA synthetic folic acid. I eat a simple sandwich I am asleep the same with Tuna macaroni out like a light
Hi Aidan, it sounds pretty similar to the effects of D-lactic acid, but as I was saying, there are other Neurotoxic Organic Acids from other forms of Bacterial Overgrowth that are capable of giving the same effects as D-lactic acidosis according to the American Journal of Nutrition including Histamine. So I guess that you may have had Acidosis and getting a Blood Gas may be a good first step and could possibly be done privately; if set up to do so, for when you develop systemic symptoms or breathing difficulty.

I also have periods of very low pulse as well as very fast. When my pulse rate went below 50 bpm many years ago during investigations the Consultant would not believe it and blamed it on the finger attachment; but my low pulse rate was setting off the alarm every time that I started to fall asleep and may have been related to Apnoea that I was having with long periods where I stopped breathing. I also go out like a light when I consume carbohydrates when unwell (this is not happening at the moment while in remission, nor reflux or difficulty emptying my stomach). So I have a few similarities to your symptoms.

Vomiting, Abdominal Pain and Sickness during bad episodes are some of the key symptoms; but it affects every organ systemically, from fast tachyarrhythmias to kidney failure that promotes further increase in D-lactic acid (but only during major exacerbations; symptoms can be from mild to extreme). I was diagnosed with both Tachycardia and Bradycardia during investigations for Apnoea which was also diagnosed.

Muscle weakness often causing me slurred speech is also another symptom as well as Fatigue and Memory difficulty; I have also had intermittent low temperatures as well as frequent high BP during episodes;

For 20 years, I was left with hundreds of periods of breathing difficulty without ever being given tests for acidosis; so I guess that probably no one else will have Blood Gasses taken when they develop breathing difficulty, which will most likely be put down to Anxiety and Overbreathing!!!! Because Doctors have misunderstood what is happening, so will react with some form of Somatic explanation...next please!

Overbreathing happens because your body is trying to excrete and eliminate high C02 Acidosis by breathing faster, panting, increasing Blood Pressure and Heartrate, while the Heart muscle itself and (mitochondria dysfunction) must be affected by the Neurotoxin causing things like Ectopic heartbeats and tachyarrhythmia.

Sickness is one of the key signs during exacerbations along with encephalopathy that can be from dizziness to real cognitive difficulty and more severe encephalopathy.

We need a Chemist to be able to measure the most simple form of excreted D-lactate in Urine; If this was done with something like a test strip, then we could learn more by plotting a graph of the rise and fall with corresponding symptoms.

It would be interesting to see what levels come up on the Quantiquick Test Strip; whether it will be sensitive enough? but I am not sure if anyone has tried this yet?

I have had a very bad year being ill for much of it due to increasing antibiotic resistance and have just got my symptoms in remission; I do not want to allow myself to become ill again to try the strips. But I expect that D-la will be back again as it is virtually impossible to stop permanently. So I should really purchase some test strips to try out at some point in the future for reference.

I wonder if it would be worth talking to the manufacturers and see if they could produce test strips for urine at the required sensitivity? Or sensitive to a range of Organic acids?
 
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Avenger

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Hi Aidan,
I nearly forgot, the D-lactate Assay is set for a high threshold, but as there have been very few patients with diagnosed D-lactic Acidosis, there is no absolute consensus that the Levels set as a threshold are correct, or correct for individuals.

But the Blood Gas will show Acidosis at a threshold that is set for many forms of Acidosis.

I know that I can have months of moderate symptoms as well, so it is possible that we may all be producing different levels of Organic Acids (read Dr. Myhill on Bacterial Overgrowth; her videos are also very well explained).

But what if some of this was allergy to the Neurotoxin itself even at lower levels?

There has been so little investigation, because it has been believed for so long that D-lactic acidosis is rare and only due to short bowel syndrome; but it is my belief that not having short bowel syndrome would not mean that you cannot develop D-lactic Bacterial Overgrowth. This has probably been a blind spot for Doctors concerning ME/CFS.

There can be a lot of different reasons for D-lactic acidosis and has been found in a number of children with high Carbohydrate intake; Dr. Luke White has written that 'D-lactic acidosis may be more prevalent than we think'.https://practicalgastro.com/wp-cont...lar, with high carbohydrate diets in children.

So if it can be found in children, why not adults? It can also be found in Diabetes and functional Gut issues..

D-lactic acidosis is about encephalopathy as in Myalgic Encephalomyelitis!
 

Wayne

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I have had a very bad year being ill for much of it due to increasing antibiotic resistance
Hi @Avenger -- Just a reminder, Methylene Blue has been shown in the laboratory to be effective against antibiotic resistance bacteria. I started taking MB in March, and have discovered since that it's one of the best things I've ever done for myself healthwise.

I believe it knocked out my Long Covid after more than a year, likely cleared up a low-grade infection in my sinuses, and also likely knocked out a low-grade Candida problem. All that besides giving me extra energy on a daily basis. I believe it's also been good for my brain and neurological system.

Take care!
 

Avenger

Senior Member
Messages
323
Hi Wayne,
Methelene Blue it sounds excellent! I am very interested. It is always good to have more than one possible way out of the maze. Where can I get some for human use? Or can you use the fish version (I suppose that it would have to be extremely pure for using with fish as they are so sensitive, but on bottles seen on eBay it states not for human use?). but the benefits look astounding!

What is the best dosage and source or make?


Thank you!
Hi @Avenger,

I recently starting doing a lot of research and experimentation with methylene blue, and one of the things I discovered was it has quite a track record for being a remarkable antimicrobial. I finally started a thread on some of my experience this past week entitled, Methylene Blue -- The "Perfect Supplement" For ME/CFS (?).

The link takes you to a post I made where a guy who frequently got urinary tract infections (UTIs) was able to stop them completely by using only 3 drops daily of Methylene Blue daily. I think that's just an amazing testimonial. I then ran across an article entitled, "Methylene Blue: Understanding the Possible Uses, Benefits, and Risks".

Below is the last section in the article. Get a load of the very last sentence. I think there's a good chance MB could be something worthwhile for you to consider as you deal with some of your antibiotic resistant issues. -- Best!

Is methylene blue being studied for any other uses?

Researchers are looking into whether methylene blue can be used for other conditions. This includes:​
  • Alzheimer’s disease: Researchers are looking into methylene’s potential to slow memory loss in people with Alzheimer's dementia.
  • Memory loss: Even outside of dementia, methylene blue’s antioxidant activity may help age-related damage that occurs over time.
  • Lyme disease: Researchers looked at medications that kill the bacteria that causes Lyme disease. In a lab, methylene blue was effective at killing antibiotic-resistant bacteria.
 

Avenger

Senior Member
Messages
323
POSSIBLY MY MOST IMPORTASNT FIND SO FAR; THE EFFECTS SODIUM BICARBONATE ON THE MICROBIOME, BACTERIAL INFECTIONS AND ANTIBIOTCS!

SODIUM BICARBONATE HAS THE POTENTIAL TO INCREASE POTENCY OF ANTIBIOTICS AND EVEN EXTEND RESISTANT ANTIBIOTIC USE BY SENSITIZATION OF MEMBRANE POTENTIAL IN GRAM NEGATIVE BACTERIA IN THE GUT!

BICARBONATE ALSO ALTERS BACTERIAL SUSCEPTABILITY TO ANTIBIOTCS BY TARGETING THE PROTON MOTIVE FORCE IN GRAM POSITIVE BACTERIA ACCORDING TO PUB MED.

BICARBONATE INHIBITS BACTERIAL GROWTH AND BIOFILM PRODUCTION AND CAN EVEN BE USED AS A MOUTH WASH; SO MUCH POTENTIAL!


Hi Wayne,
thank you. I just saw your post, so will definitely try some Lactoferrin. What is a trial dosage?

I have just found something of possibly great benefit; the most simple and cheap substance, Sodium Bicarbonate, that I am now taking with Antibiotics that had failed due to resistance that seem to be working again! But need to trial this much longer and see if there are any side effects.

I have been experimenting with a lot of different Antimicrobials, knowing that at some point my Antibiotics may fail due to Antibiotic Resistance. I started to fail to respond to antibiotics some months ago, remaining unwell even using low fermenting foods; and have had to revisit old antibiotics that may or may not work, but have found that they seem to work again when combined with Sodium Bicarbonate (the only drawback is the Sodium, but I am going to try other forms of Bicarbonate to see if they have the same properties).

This was a chance in a million find as it seems to be working so far;
I had decided to see if altering my PH in my Gut would affect the still unidentified Bacteria causing D-lactic acidosis. I have been using a Low fermenting diet but now realise that it was mainly Antibiotics that were stopping my main symptoms; The Low Fermenting diet only reduces my symptoms and the fatigue even after pottering has been so bad later in the day that it feels like I have climbed a very high mountain without oxygen (I am prone to pushing myself and get delayed symptoms after any activity). As resistance worsened some months ago, I started to become ill just days after taking antibiotics then failing altogether and ended up ill most of the time.

I had reached the bottom of the barrel, but purchased some Sodium Bicarbonate to see if it would have an effect in increasing my Gut PH to reduce the Bacteria causing my illness. I still have to trial it for other side effects including raised BP, but only intend to use it with Antibiotics.

I started using Sodium Bicarbonate with old Antibiotics, some that had not worked at all in desperation and suddenly found that a number of antibiotics had started working again! I have to continue to trial this and there are some dangers if you take too much, so do not use without seeking medical advice first!

I am using minimum dosage and only while using Antibiotics; SODIUM BICARBONATE IS DANGEROUS IF YOU TAKE TOO MUCH AN CAN CAUSE INCREASED BLOOD PRESSURE SO PLEASE SEEK ADVICE BEFORE USING!

The recommended dosage on the packet is 600mg, one or two capsules two or three times a day, but I am using only 3 to 4 capsules a day and only when taking antibiotics. I wonder if it could be used along with the properties of Lactoferrin? But Sodium Bicarbonate is sold in much higher capsule dosages; I still need to find out what the minimum dosage is to reduce any unwanted side effects.

As Bicarbonate is used intravenously (for D-lactic acidosis), I was wondering if it could be given along with Antibiotics for specific blood infections, using Bicarbonate to allow the breakdown of both Gram Positive and Gram Negative membranes to allow Antibiotics to do their work. From what I have read Bicarbonate is a ''Selective dissipator of the Ph gradient of the proton motive force across the cytoplasmic membrane of both Gram Positive and Gram Negative bacteria''.

There is could be a game changer for Antibiotic Resistance at the very least for specific Gut infections.
What dosages and best make for Lactoferrin?


Thank you.
 
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