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

Avenger

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@Avenger and others.

I finally got a doctor to write a script for the Mayo Clinic D-lactate urine test but I don't know if I should put myself through eating a bunch of carbs that could kill me by putting me in acidosis. I was on the carnivore diet and taking herbals for three months and it basically saved my life. But I eventually had to go off of it because complications arose. For the past couple months I've been getting progressively worse after having to eat carbohydrates. Right at the moment I've basically been only eating meat and drinking apple juice to get my sugar in. Simple sugars seem to not aggravate the condition as much as it gets absorbed quickly enough that my gut doesn't ferment it. But I still get issues with it that are significant.

Should I go through with the test? I want to eat enough to show the d lactate being excreted in the urine but not too much that it could do significant damage. I'm very fragile at the moment. Whenever I eat carbs I get severe neuro/cognitive issues, autonomic issues, acidosis, fatigue, and go into a coma like state among other symptoms. Each time I get worse and worse to the point that if I do it one more time I fear it may kill me. If I go through with it I feel like I'm going to have to be hospitalized to correct the acidosis and correct my gut issues. But I have little faith in the doctors as they are incompetent with issues like this and I've been in acidosis at the ER so many times without them investigating or doing anything. I'm very under weight and don't know what diet I should go on. My stomach, gut and gallbladder all work at like 5%. To the person wondering about CCI/AAI I'm 95% convinced this is caused by vagus nerve damage and brainstem dysfunction or at least in my case. It all controls how your stomach, gallbladder, liver, pancreas, and gut works. I believe the vagus also modulates the gut bacteria and microbiome. Any damage or dysfunction can cause many issues related to those organs. I developed ME/CFS after forceful chiropractic manipulations along with getting sick. I have upper cervical ligament damage and lower cervical instability confirmed by Digital motion X-Ray, CT, and MRI. I've been diagnosed with CCI, AAI, and subaxial instability by Dr. Gilete.

Anyways I'm running out of options on what to do here. I think I might have to try antibiotics just to do something because I'm running out of ideas. Don't know what antibiotics would be the best. Also going on an elemental diet I think.

ME/CFS and Covid-19 long haul probably due to Viral changes within the Microbiome (Virus can enhance some species of Bacteria and advantage them to kill other species) Virus need to find host Bacteria or die and the Gut is a main target;

Hi Jwarrior77,
I thought that you might all like this report;

New post on CFS Remission


Long Haul Covid – Welcome to the ME/CFS world!
by lassesen
Long haul COVID is sometime referred to as Post-Virus Syndrome. I prefer the more general, Post-Infection Syndrome. Most people with a CFS/ME diagnosis fall under that classification and causation.
Forget about Disability etc
A few people may get it, those with positive test results for something wrong, for example a SPECT scan of the brain. In general, long haul covid show no atypical results from standard medical tests. This has been the situation for ME/CFS for decades. Some people may get it granted for up to one year... and then will get turned down on renewal.
How will the insurance company respond?
From ME/CFS experience, it will be suggested that it is either psychosomatic, or work-phobic , or someone using it as an excuse not to work, or psychologically crippled from COVID stress. There is nothing wrong with the patient according to medical tests. Hence, it is psychological or attitude. Benefit denied.
Probable Cause ... microbiome dysfunction
Microbiome dysfunction, even when shown, would be viewed as an experimental or research diagnosis and thus, not applicable for disability. This gets much worst because almost no physician knows now to effectively deal with a microbiome dysfunction apart from a Fecal Matter Transplant (which may require multiple attempts using different donors -- they still have not figured out compatibility and compensation vectors for FMT). FMT in the US is restricted to a very small number of conditions, and long haul covid is unlikely to be included for decades.
Technically, sufficient information appears to be available on PubMed (National Library of Medicine). It is not consolidated into a cookbook formula but spread across over 3000 separate articles. Clinical MDs do not have time to consume this, and applying it would be contrary to existing standards of care. Their supervisors will veto it (been there, seen that!)
Bottom Line
The cure for Long Haul Covid is likely the same cure as ME/CFS. From existing studies, we know that a percentage will spontaneous recover every 6 months, with the percentage decreasing over time. Some will never recover. A few will, like ME/CFS. continue to get worst.

lassesen | March 2, 2021 at 3:11 pm | Categories: Chronic Fatigue Syndrome | URL: https://wp.me/p2Sdu4-b2b

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Hi, I’m new and specifically made an account to comment here. I found this thread after having strong suspicion of d-lactic acidosis caused by SIBO in myself. I was diagnosed with ME/CFS by a neurologist last year and when I told him that I was only made symptomatic by carb consumption, he was baffled. I looked up my symptoms and read paper after paper until it was clear what was wrong.

I’ve had severe episodes and now I’m on a nasal feeding tube because I can’t maintain my weight without slowing down the consumption of carbs over 24 hours. Can’t maintain it with keto either. Developed MCAS too.

GI doctor’s sent a consult for placing a j-tube with nothing diagnosed, but thus far he’s refused a d-lactate urine test. I’m going to try again to convince him because it’s so much less invasive than surgery for something unknown. I could likely find someone to treat me for SIBO, but my aim is to prove (or even disprove) d-lactic acidosis.
 

Avenger

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Hi heatshimmer,
ME patient Merryn Crofts died in similar circumstances, after severe weight loss and naso-gastric tube. She would have been force fed Carbohydrates which would have exacerbated her death because she was already very weak when admitted. I believe that she had D-Lactic acidosis or variant Organic acid and would have died due to ignorance! You need to question what they are doing. If you did have D-Lactic acidosis and they run every test under god, it is likely that most investigtion's will be normal as found in many short bowel patients who have D-La; Carbohydrates could cause a patient with D-Lactic acidosis severe injury Seizure, Coma even death; See Merryn Crofts reports below, recorded in ignorance as ME. Only Blood Gasses, D-Lactate or Fecal Overgrowth investigation's will show any signature.


My own belief is that a number of ME/CFS may be producing D-Lactate, but some of us may be subclinical, whereas others like Merryn Crofts may have been in a self perpetuating cycle, because she was unable to digest Carbohydrates and Sugars. One method to stop the symptoms in hospital is to give parenteral food directly into the bloodstream.

D-Lactic acidosis is a form of IBS/SIBO; and I believe that no one is precluded from developing D-Lactic producing Bacterial Overgrowth; it may be that those with short bowel have more elevated Overgrowth and production of fermented Carbohydrates and Sugars. But there may be many like Merryn Crofts who have already dies of D-Lactic acidosis, because Neurologists have no training in abnormal neurology caused by Bacterial Overgrowth in particular D-Lactic acidosis.

You need to look at all Organic Acids produced through Overgrowth including D-Lactic. A Bacterial Overgrowth investigation would be the first stage, through the detection of both Methane and Hydrogen. There may be a more complex process at work because some Methanogen's are caused by Archaea, but the tests will show your overgrowth/SIBO.

We are all being abused through ignorance and lack of training; Many Consultants have no idea about the dangers or possibility of D-Lactic acidosis.

https://meassociation.org.uk/2018/05/the-times-me-sufferer-who-was-dismissed-as-hysterical-vindicated-in-death-29-may-2018/

https://www.google.com/search?q=ME+...recorded+as+ME&rlz=1C1AWFA_enGB734GB734&oq=ME

The Times: ME sufferer who was dismissed as hysterical ...
https://meassociation.org.uk › News


29 May 2018 — ME left Merryn Crofts bed-bound and she died shortly after her 21st birthday. ... have her death recorded as a result of ME after a coroner concluded that ... have been donated for medical research at Addenbrooke's Hospital, Cambridge. ... According to the ME Association, one in four sufferers is affected so ...


ME Awareness: 'My daughter, 21, who died weighing 5 1/2 ...
https://meassociation.org.uk › News


6 May 2019 — ME Awareness: 'My daughter, 21, who died weighing 5 1/2 stone, had ME on her ... a real disease'; Only second person in the UK to have ME listed on a death certificate ... A few months later she collapsed and was taken to hospital. ... The ME Association is calling for better awareness for the illness which ...

The ME Association and Press Coverage of Merryn Crofts ...
https://meassociation.org.uk › News


28 May 2018 — “The recording of deaths in people with M.E. is unsatisfactory… ... examined at Addenbrooke's Hospital in Cambridge, (where M.E. post mortem ...

WHAT YOU NEED TO KNOW ABOUT ME - ME Association
https://meassociation.org.uk › wp-content › uploads


PDF
www.meassociation.org.uk □ Registered Charity Number 801279. 1. MAY 2020 ... People with M.E., as well as patient ... Merryn, was just 21 when she died”.

Inquest Ruling: Young drama student Merryn Crofts killed by ...
https://meassociation.org.uk › News


18 May 2018 — By John Siddle, PR Manager, ME Association. ... person in the UK to have M.E. – myalgic encephalomyelitis – listed on a death certificate. ... but I have come across many patients with severe M.E. that are bedbound that have ...
 

Avenger

Senior Member
Messages
307
Likes
487
@Avenger and others.

I finally got a doctor to write a script for the Mayo Clinic D-lactate urine test but I don't know if I should put myself through eating a bunch of carbs that could kill me by putting me in acidosis. I was on the carnivore diet and taking herbals for three months and it basically saved my life. But I eventually had to go off of it because complications arose. For the past couple months I've been getting progressively worse after having to eat carbohydrates. Right at the moment I've basically been only eating meat and drinking apple juice to get my sugar in. Simple sugars seem to not aggravate the condition as much as it gets absorbed quickly enough that my gut doesn't ferment it. But I still get issues with it that are significant.

Should I go through with the test? I want to eat enough to show the d lactate being excreted in the urine but not too much that it could do significant damage. I'm very fragile at the moment. Whenever I eat carbs I get severe neuro/cognitive issues, autonomic issues, acidosis, fatigue, and go into a coma like state among other symptoms. Each time I get worse and worse to the point that if I do it one more time I fear it may kill me. If I go through with it I feel like I'm going to have to be hospitalized to correct the acidosis and correct my gut issues. But I have little faith in the doctors as they are incompetent with issues like this and I've been in acidosis at the ER so many times without them investigating or doing anything. I'm very under weight and don't know what diet I should go on. My stomach, gut and gallbladder all work at like 5%. To the person wondering about CCI/AAI I'm 95% convinced this is caused by vagus nerve damage and brainstem dysfunction or at least in my case. It all controls how your stomach, gallbladder, liver, pancreas, and gut works. I believe the vagus also modulates the gut bacteria and microbiome. Any damage or dysfunction can cause many issues related to those organs. I developed ME/CFS after forceful chiropractic manipulations along with getting sick. I have upper cervical ligament damage and lower cervical instability confirmed by Digital motion X-Ray, CT, and MRI. I've been diagnosed with CCI, AAI, and subaxial instability by Dr. Gilete.

Anyways I'm running out of options on what to do here. I think I might have to try antibiotics just to do something because I'm running out of ideas. Don't know what antibiotics would be the best. Also going on an elemental diet I think.
Hi Jwarrior77,
sorry, I did not answer. It could be dangerous to deliberately take high doses of Carbohydrates with D-Lactic acidosis unless your Consultant fully understands how to reverse the symptoms especially if you are fragile or weakened by the condition; but according to the Oley Clinic it may have to be induced to obtain D-Lactate because D-Lactic acidosis is transient and episodic. You really need to discuss this fully including your fears, which I feel are well founded. I have a similar history of going to A&E with symptoms similar to yours for many years, with Doctors blind to the cause because most investigations come back normal. With D-La only Blood Gasses, D-Lactate or Fecal Assay will show the abnormality. D-Lactic acidosis seems to occur without leaving other investigative signatures. It can poison you, cause systemic neurological symptoms, but apart from Blood Pressure changes and Tachyarrythms the other symptoms including abdominal pain, weakness, fatigue, cognitive and respiratory symptoms seem to occur often without trace. I had an episode reported as Seizure/TIA but Doctors did not have a clue what was happening and I was frequently seen with breathing difficulty put down to hyperventilation.

D-Lactate itself is transient episodic, fluctuating and can last for short or fluctuating periods and disappear soon after neurological symptoms, so will be difficult to record. You need to capture the D-Lactic acid during neurological symptoms (see the Oley Clinic Report below; it offers some good insights; they also believe Probiotics as another possible causation; Some Probiotics may make D-Lactic acidosis worse while others can reverse the symptoms). It is well worth reading the whole Oley Report.

But I know little of the Urine Test; You could ask how long does the D-Lactate remain in Urine; Can it be frozen or processed after it is stored during a bad episode?

I have had the same fears; It is possible not to find D-Lactate because there is a delay between D-Lactic acid in Blood and Spinal Fluid, between the time it takes to eliminate and excrete. So you could possibly still have D-Lactic poisoning in spinal fluid but not show in your blood. There seems to be varying delays in bad episodes that can take days to stop (you may still feel very unwell, but not have exacerbation of neurological symptoms), it is often like a hangover as the symptoms lessen when I use strict no Carbohydrates to stop the worst episodes. I wonder how long D-Lactate remains in spinal fluid because it can take 36 plus hours to fully stop the symptoms; so if D-Lactate is transient in blood investigations the process must be more complex than these explanations and I am sure that anyone who can develop SIBO/IBS is not precluded from developing D-Lactic producing overgrowth; It may be that it is more profound in 'short bowel/jejunal bypass', but there are many possible causes including motility and anything affecting the gut-brain axis including vagus nerve, brainstem and parasympathetic nervous system; also self perpetuation due to the production of hydrogen and methane affecting the nervous system or D-lactate may set a self perpetuating cycle that is able to produce similar affects as short bowel syndrome.


I cannot find anyone to perform a urine test in the UK. I have to travel around 50 miles and organise transportation to Birmingham from Cheltenham if I want a Blood D-Lactate investigation which has taken me three years to organise. I have been very lucky because I have had access to antibiotics including Metronidazole, Tinidazole and Rifaximin, but the Overgrowth always comes back and at some point I may gain total resistance. It is very complex and the Oley clinic believe that there may be other toxic substances and disturbances to metabolic pathways.


https://oley.org/page/DLacticAcidosis
D-Lactic Acidosis Oley Clinic;
Craig Petersen RD, CNSC

In D-lactic acidosis, carbohydrate that is not properly absorbed is fermented by an abnormal bacterial flora in the colon. This fermentation produces excessive amounts of D-lactate. High amounts of D-lactate are then absorbed into the circulatory system, resulting in elevated concentrations of D-lactate in the blood.
It has been thought that the neurologic symptoms are a result of this unusual D-lactate elevation, but it is unclear if this is actually the cause or whether other factors are responsible, as metabolic acidosis and elevation of blood D-lactate alone are not capable of producing these symptoms. Other factors may also play a role in the promotion of this neurological disorder, such as the generation of toxic substances or disturbances of metabolic pathways.
Regardless of the specific factors that ultimately cause D-lactic acidosis, there are certain conditions required for the development of this disorder. Foremost is the presence of a colon with a flora rich in D-lactate–producing bacteria, accompanied by the ingestion and malabsorption of relatively large amounts of carbohydrate that feeds these bacteria. Additionally, an impairment of D-lactate metabolism appears to play a necessary role.

Diagnosing D-lactic Acidosis

D-lactic acidosis should be considered when any person with SBS or other malabsorptive disorder presents with neurologic symptoms consistent with the syndrome, with no other causes identified. The literature indicates a colon must be present for the disorder to occur. The level of suspicion should be further raised if the consumer received recent antibiotic therapy or was started on probiotics, both of which could alter the intestinal flora to favor D-lactate production. A consumer or caregiver may not report initial episodes of altered neurological status, depending on how severe they are and how long they last. However, earlier reporting of neurologic symptoms may lead to earlier diagnosis.
Because of the transient or episodic nature of D-lactic acidosis, laboratory confirmation of the syndrome can sometimes present a challenge. Individuals with D-lactic acidosis often report a history of previous neurologic symptoms similar in nature to those occurring in the current episode. A diet history will frequently reveal the ingestion of relatively large amounts of carbohydrate in the form of simple sugars before the onset of symptoms. Some investigators have confirmed the diagnosis by administering an oral carbohydrate challenge, which reproduced neurologic symptoms and significantly increased the serum D-lactate concentration.
Laboratory analysis will typically reveal a metabolic acidosis. Normal laboratory analysis may reveal elevated serum lactate, but frequently they show normal. Because routine blood tests are designed to only assay for L-lactate, it is essential that a specific request for D-lactate levels is ordered to determine plasma D-lactate concentration. At this time, the blood sample needs to be sent out to Mayo Clinic, since other labs do not ordinarily perform this test. Additionally, D-lactate levels need to be obtained during the period of neurologic disturbance, as levels decline rapidly upon resolution of the symptoms. Frequently, the failure to properly obtain blood D-lactate levels delays or obscures diagnosis. Although there is not complete consensus, a plasma D-lactate concentration of 3 mmol/L is frequently used in defining D-lactic acidosis.
The clinical or biochemical information leading to the suspicion of D-lactic acidosis is frequently confirmed or supported by the response to treatment. Appropriate treatment often results in rapid resolution of neurologic symptoms and prevents or reduces further recurrence of the syndrome.
 

Avenger

Senior Member
Messages
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487
Hi, I’m new and specifically made an account to comment here. I found this thread after having strong suspicion of d-lactic acidosis caused by SIBO in myself. I was diagnosed with ME/CFS by a neurologist last year and when I told him that I was only made symptomatic by carb consumption, he was baffled. I looked up my symptoms and read paper after paper until it was clear what was wrong.

I’ve had severe episodes and now I’m on a nasal feeding tube because I can’t maintain my weight without slowing down the consumption of carbs over 24 hours. Can’t maintain it with keto either. Developed MCAS too.

GI doctor’s sent a consult for placing a j-tube with nothing diagnosed, but thus far he’s refused a d-lactate urine test. I’m going to try again to convince him because it’s so much less invasive than surgery for something unknown. I could likely find someone to treat me for SIBO, but my aim is to prove (or even disprove) d-lactic acidosis.
D-Lactic Urine Test Strips that can be purchased Online;

Hi heatshimmr, JWarrior77 and Cnew2this,
I found this online Urine test for D-Lactic acid online. I will call them tomorrow. If you were able to measure Urine D-Lactate during bad exacerbations at home, it may answer a few questions for us all: It would be ideal if those ME/CFS with D-Lactic symptoms who would be able to demonstrate their cause to Doctors, with 'no if's or buts' and would break the chains imposed on ME/CFS as being purely psychological, but a manifestation of Gut Microbiome that we have caused due to environmental issues (everything from Proton Pump Inhibitors to NSAID's, Antibiotics, Fluoride & Chlorine in Water etc).


  1. QUANTIQUIK™ D-LACTIC ACID QUICK TEST STRIPS


QuantiQuik™ D-Lactic Acid Quick Test Strips

Zoom
QuantiQuik™ D-Lactic Acid Quick Test Strips
Direct determination of D-Lactate concentrations in food and beverage samples as well as biological (e.g. urine, blood, etc.) samples.

View Datasheet
• Fast and sensitive. Use of 20 or 100 µL sample. Semi-quantitative measurement between 0-180 mg/L (undiluted) D-Lactate.
• Convenient. No extra equipment required.
• Sample treatment and assay can be performed in under 15 minutes.
LACTATE is generated by lactate dehydrogenase (LDH) under hypoxic or anaerobic conditions. D-lactate is produced in only minor quantities in animals and measuring for D-lactate in animal samples is a means to determine the presence of bacterial infection. Furthermore, since D-lactate is a specific indicator of bacteria fermentation, its measurement can be used to determine the freshness of milk, meat and fruit juices. Elevated levels of D-lactate in wine is an indication of lactic acid bacteria contamination. BioAssay Systems' QuantiQuik™ D-Lactate Test Strips are based on D-Lactate dehydrogenase catalyzed oxidation of D-lactate in which the formed NADH reduces a chromogenic reagent. The intensity of product color, is directly proportional to D-lactate concentration in the sample.
Show 102550100 entries
Search:
Cat# Size Price Qty Buy QQDLAC1010 Tests£44.20
Add to Basket
 

Avenger

Senior Member
Messages
307
Likes
487
Hi, I’m new and specifically made an account to comment here. I found this thread after having strong suspicion of d-lactic acidosis caused by SIBO in myself. I was diagnosed with ME/CFS by a neurologist last year and when I told him that I was only made symptomatic by carb consumption, he was baffled. I looked up my symptoms and read paper after paper until it was clear what was wrong.

I’ve had severe episodes and now I’m on a nasal feeding tube because I can’t maintain my weight without slowing down the consumption of carbs over 24 hours. Can’t maintain it with keto either. Developed MCAS too.

GI doctor’s sent a consult for placing a j-tube with nothing diagnosed, but thus far he’s refused a d-lactate urine test. I’m going to try again to convince him because it’s so much less invasive than surgery for something unknown. I could likely find someone to treat me for SIBO, but my aim is to prove (or even disprove) d-lactic acidosis.
Mitochondrial Dysfunction;

Hi, Heatshimmer,
Concerning Neurologists, Diagnosis of ME/CFS is a dismissal and a bad label because it is immediately associated with psychological;


I had four diagnoses of Low Mitochondrial Function or Dysfunction, performed many years apart. 2 Mito tests by Neurologists and 2 Mito tests performed by Dr. Sarah Myhill all showing Low Function (although during moderate symptoms; this was not during an exacerbation).

The two from Neurologists stated 'Surprisingly Low Mitochondrial Function' (4 years apart); but they dismissed the results because there was nothing relating them to my Histochemistry or Genetic abnormality that they were looking for.

Dr. Myhill believed that the results showed the cause of my Fatigue and Symptoms.

I have just realized that there is no abnormal Histochemistry with D-Lactic acidosis, so the Neurologists missed and dismissed the main clue. During serious episodes of D-Lactic acidosis there is frequently no abnormal blood investigations, so no abnormal Histochemistry or Genetic fault and Cell Activity would have to be properly monitored and compared with a baseline when well.

D-Lactate can poison you and cause Mitochondrial dysfunction without affecting normal blood investigations. No wonder is has gone under the radar for so long.

I now realize that the Neurologists were looking for a genetic fault and so dismissed my own problem because they had not understood it properly. This may have been happening for many years. I still believe that there may be many others with production of similar Organic Neurotoxins that can cause Mitochondrial Dysfunction, hence abnormal Fatigue and Multiple Symptoms which include those generated by the Neurotoxin on all Organs.

D-Lactic acidosis causes the same Mitochondrial Dysfunction Symptoms as Genetic illness, but due to Neurotoxicity that can be found also in Spinal Fluid and Brain causing multiple symptom including encephalopathy.
 

Jwarrior77

Senior Member
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D-Lactic Urine Test Strips that can be purchased Online;

Hi heatshimmr, JWarrior77 and Cnew2this,
I found this online Urine test for D-Lactic acid online. I will call them tomorrow. If you were able to measure Urine D-Lactate during bad exacerbations at home, it may answer a few questions for us all: It would be ideal if those ME/CFS with D-Lactic symptoms who would be able to demonstrate their cause to Doctors, with 'no if's or buts' and would break the chains imposed on ME/CFS as being purely psychological, but a manifestation of Gut Microbiome that we have caused due to environmental issues (everything from Proton Pump Inhibitors to NSAID's, Antibiotics, Fluoride & Chlorine in Water etc).


  1. QUANTIQUIK™ D-LACTIC ACID QUICK TEST STRIPS


QuantiQuik™ D-Lactic Acid Quick Test Strips

Zoom
QuantiQuik™ D-Lactic Acid Quick Test Strips
Direct determination of D-Lactate concentrations in food and beverage samples as well as biological (e.g. urine, blood, etc.) samples.

View Datasheet
• Fast and sensitive. Use of 20 or 100 µL sample. Semi-quantitative measurement between 0-180 mg/L (undiluted) D-Lactate.
• Convenient. No extra equipment required.
• Sample treatment and assay can be performed in under 15 minutes.
LACTATE is generated by lactate dehydrogenase (LDH) under hypoxic or anaerobic conditions. D-lactate is produced in only minor quantities in animals and measuring for D-lactate in animal samples is a means to determine the presence of bacterial infection. Furthermore, since D-lactate is a specific indicator of bacteria fermentation, its measurement can be used to determine the freshness of milk, meat and fruit juices. Elevated levels of D-lactate in wine is an indication of lactic acid bacteria contamination. BioAssay Systems' QuantiQuik™ D-Lactate Test Strips are based on D-Lactate dehydrogenase catalyzed oxidation of D-lactate in which the formed NADH reduces a chromogenic reagent. The intensity of product color, is directly proportional to D-lactate concentration in the sample.
Show 102550100 entries
Search:
Cat# Size Price Qty Buy QQDLAC1010 Tests£44.20
Add to Basket


Thank you so much for this link. Have you tried them or been able to call them? I'm thinking of getting them if they are legit.
 

EddieB

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I found these test strips on Amazon, about $50 US. In their description, they say that the strips are able to measure D lactic in urine, but in another place say not to use for human diagnosis. Probably a legal disclaimer.

I was able to get a blood test for L lactic acid, that came back normal. But I believe that I read that D lactic would not show up in that test.
 

Jwarrior77

Senior Member
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I found these test strips on Amazon, about $50 US. In their description, they say that the strips are able to measure D lactic in urine, but in another place say not to use for human diagnosis. Probably a legal disclaimer.

I was able to get a blood test for L lactic acid, that came back normal. But I believe that I read that D lactic would not show up in that test.
Yeah I saw them on Amazon also. It has only one review with one star but the person doesn't give a reason why. Hopefully it's legit. Not sure if I will try it but desperate times come with desperate measures.

On a side note has anyone gotten a 24 hour eeg done to possibly catch any brain wave changes or significant encephalopathy? Perhaps it could show doctors something is actually going on? Or maybe due to the nature of illnesses like this, it might not show much. I'm not sure. I think it might be something to consider as a test. Sorry if this has been brought up before. I also have a theory as to other reasons why this condition seems to happen in a subset of MECFS patients, or at least how it pertains to my situation. I believe pancreatic enzyme insufficiency, gut motility issues, an insufficient amount of bile release, and an overly acidic environment in the gut all contribute and allow for SIBO and D lactic acidosis to occur. I have the explanation all typed out and I might post a bit later. But some things that have helped lower some symptoms for me would be to take sodium bicarbonate before meals, taking Creon (pancreatic enzymes), and supplementing Ox bile. However the most effective treatment so far has been taking Rifaximin.
 

Avenger

Senior Member
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Avenger,
Have you tried the test strips mentioned above, and find anything?
Hi, EddieB,
sorry not to get back sooner, but have still been off all medication/antibiotics for 2 months now, to be able to do D-Lactic assay and have been almost constantly unwell and fatigue and symptoms so bad; that I was taken into hospital with encephalopathy two weeks ago.
Even when not ill, I am weak and suffering badly from fatigue, even if I stick to the FODMAP diet and some difficulty thinking today. This is make or break for me and I have to continue until the assay has been properly performed. But the shortest time it has taken for me to have the tests done is 4 hours (3/4 hour of that waiting for a Covid-19 test) to be admitted to hospital; and D-Lactate is transient (although I would assume it can still be found in spinal fluid and a Fecal assay would be the best way to demonstrate Bacterial Overgrowth to identify it for the best antibiotics, but that has not been offered).

I have sent you this concerning Systemic Lupus, which is similarly being related to gut bacteria as are so many other diseases, but interestingly can be related to Fibromyalgia. But in Systemic Lupus one Bacterium is found in higher quantity, Ruminococcus gnavus. It seems to me that these problems with Bacterial Overgrowth are part of a negative cycle that involves Organic acids as neurotoxin, but also secondary immune dysfunction and autoimmune disease that could reinforce one another and cause a wide variety of symptoms.

The interesting thing is that Systemic Lupus has been increasing and that ''Fibromyalgia is a disorder that can occur alone or secondary to connective tissue disorders such as lupus. Studies suggest that about 25% of people who have lupus also have fibromyalgia''; https://www.hss.edu/conditions_Lupus-and-Fibromyalgia.asp

I have always believed that this is an environmental issue due to bombarding ourselves and Microbiome with pollutants including chlorine and fluoride, antibiotics, and antibacterials etc. changing and acting upon the gut to cause these imbalances (we are devolving as humans and making ourselves vulnerable to opportunistic Bacteria because we are devolving our microbiome, due to not understanding its complexity or necessity or the effects of chemicals that we place in our water or antibiotics etc.).


I have some difficulty thinking today, so please bear with my poor ability, but Just thinking about this loosely; This is only a thought; but there could be more than one form of Overgrowth or Bacteria involved in ME acting through both Organic acids and Autoimmune disease together (and or possibly unidentified Bacteria and Organic acids). I was also diagnosed with Fibromyalgia, and have a similar 'butterfly' area on cheeks and across my nose, which is how I came to find this information (I have been looking for whatever is driving my Bacterial Overgrowth) although this may be just another dead end. If renal flares are one of the symptoms of SLE then it is possible for this to inhibit the way that D-Lactate is excreted;


ScienceDaily; Lupus strongly linked to imbalances in gut microbiome
Date:February 19, 2019Source:NYU Langone Health / NYU School of MedicineSummary:The disease systemic lupus erythematosus (SLE) -- marked by the attack on joints, skin, and kidneys by the body's immune system -- is linked to an abnormal mix of bacteria in the gut.
The disease systemic lupus erythematosus (SLE) -- marked by the attack on joints, skin, and kidneys by the body's immune system -- is linked to an abnormal mix of bacteria in the gut. This is according to a new study led by scientists at NYU School of Medicine.

While bacterial imbalances have been tied to many immune-related diseases, including inflammatory bowel disease, arthritis, and some cancers, the authors of the current study say their experiments are the first detailed evidence of a link between bacterial imbalances in the gut and potentially life-threatening forms of SLE.
The new study, publishing in the Annals of Rheumatic Diseases online Feb. 19, showed that 61 women diagnosed with SLE had roughly five times more gut bacteria known as Ruminococcus gnavus, than 17 women of similar ages and racial backgrounds who did not have the disease and were healthy. Lupus is more common in women than in men.
Moreover, study results showed that disease "flares," which can range from instances of skin rash and joint pain to severe kidney dysfunction requiring dialysis, closely tracked major increases in R. gnavus bacterial growth in the gut, alongside the presence in blood samples of immune proteins called antibodies, specifically shaped to attach to the bacteria. Study participants with kidney flares had especially high levels of antibodies to R. gnavus.
The authors say the specific causes of lupus, which affects as many as 1.5 million Americans, are unknown, although many suspect that genetic factors are partly responsible.
"Our study strongly suggests that in some patients bacterial imbalances may be driving lupus and its associated disease flares," says study senior investigator and immunologist Gregg Silverman, MD. "Our results also point to leakages of bacteria from the gut as a possible immune system trigger of the disease, and suggest that the internal gut environment may therefore play a more critical role than genetics in renal flares of this all too often fatal disease," says Silverman, a professor in the departments of Medicine and Pathology at NYU Langone Health. He also suspects that antibodies to R. gnavus provoke a "continuous and unrelenting" immune attack on organs involved in flares.
Among the more practical consequences of the new research, Silverman says, could be the development of relatively simple blood tests to detect antibodies to leaked bacteria, which in turn could also be used to diagnose and track lupus progression and therapy, even in the disease's earliest stages. Current tests, he says, are often inconclusive and rely on signs and symptoms that only appear after the disease has already advanced.
Silverman, who also serves as associate director of rheumatology at NYU Langone, cautions that larger studies are needed to confirm how these bacteria may cause lupus. But if future experiments show similarly positive results, then it could result in shifts from current approaches to treating the disease, which focus on immune-suppressing anticancer medications to relieve symptoms and injury to the kidneys.
If the study team's results are validated, then some current treatments may actually be causing harm if they impair overall immune defenses against infection.
Instead, Silverman says, future treatments could include inexpensive probiotics or dietary regimens that impede R. gnavus growth and prevent flares. Fecal transplants from healthy individuals would also be a possibility.
Alternatively, Silverman says, new treatments could also be used to promote growth of Bacteroides uniformis, bacteria thought to hinder growth of R. gnavus in the gut and whose numbers decreased by as much as fourfold in study participants with lupus when compared to those without the disease. Experts say that over a 1,000 different types of bacteria make up the human gut microbiome.
For the study, researchers analyzed blood and stool samples from participants. Researchers were surprised to find strong immune antibody reactions to R. gnavus in the blood because the gut lining prevents the bacterium from escaping to other parts of the body. Researchers say this suggests that small pieces of the bacteria, known as antigens, must have "leaked" into the gut to trigger the immune reaction.
 

EddieB

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Hello Avenger,
I was afraid that you weren’t feeling well as having not heard from you lately. I hope you will find these tests informative and get some results soon.

I did convince my doctor to do a lactic acid test, but it was for L lactic, not D lactic, normal of course.
I am considering a trial of the test strips.

I had been assessed for lupus and told no, as my symptoms do not quite line up. But identifying the bacterial overgrowth as a cause makes complete sense.

Please update when you can, and I hope and pray you will begin to improve soon.
 

Avenger

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Do you take it on going?

Just got home from the gastrologist, he’s insisting that I take it, despite the negative SIBO breath test.
Hi Eddie,
I never found Rifaximin to be the best antibiotic for me, but we may all have different Bacterial Problems or forms of SIBO.

Was your SIBO test done for both Methane and Hydrogen? or just Hydrogen? I was only offered a Hydrogen Breath Test; and when I asked about checking both, they said they could only offer the Hydrogen Breath Test, which may not show a true picture if your problem is due to Methanogens (Archaea). You can have both Hydrogen and Methane producing Bacteria, in fact Methanogen's live off Hydrogen bye products of other Bacteria and can therefore alter Hydrogen output through converting it to Methane!

I got on better with Metronidazole, but this antibiotic also changes immune function, reducing immune flares; My problems could be more complex and also due to Autoimmune dysfunction, secondary to Bacterial Overgrowth, but Metronidazole was once the choice antibiotic treatment for D-Lactic acidosis, to which i can testify.

But you won't know if Rifaximin works unless you try it. It is an antibiotic that remains mainly in the Gut, so theoretically will not affect other Bacteria in other areas of the body (although I also believe that low levels of any antibiotic can educate Bacteria in gaining resistance, but statistical data shows it to be effective for SIBO).

I can only guess that your test was only for Hydrogen, for your Gastroenterologist to offer you Rifaximin?

If your test did not include Methane Producing Bacteria you may not have been fully checked for SIBO; Methane producing Bacteria (due to Archaea) live off Hydrogen, the substrate for Methane production, which is associated with constipation related illnesses, because Methane acts as a neuromuscular transmitter and slows down motility. Hydrogen acts to increase motility and either of these can act to reinforce a self sustaining cycle of Bacterial Overgrowth and Methane can be related to Gastroparesis and Constipation related Irritable Bowel Syndrome .
 

Avenger

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Hello Avenger,
I was afraid that you weren’t feeling well as having not heard from you lately. I hope you will find these tests informative and get some results soon.

I did convince my doctor to do a lactic acid test, but it was for L lactic, not D lactic, normal of course.
I am considering a trial of the test strips.

I had been assessed for lupus and told no, as my symptoms do not quite line up. But identifying the bacterial overgrowth as a cause makes complete sense.

Please update when you can, and I hope and pray you will begin to improve soon.
Hi EddieB,
I contacted Quantiquick and you have to change or dilute the urine solution and they offered some pipets to measure the dilution. I have had so many exacerbation's that my memory is often affected for some time and it is easy to forget (I will try to find the email). It would be good to have a measurement via the Test Strips from a known D-Lactic patient; then gauge sensitivity accordingly for 'CFS/D-Lactic patients' described by Sheedy et al.. (It would also be interesting to see how this affects someone who cannot properly metabolize D-Lactate via kidney excretion compared to Blood or Spinal Fluid assays).

I think that this will be about gauging the sensitivity. It would be good to get some help from a Biochemist. Perhaps someone could ask Prusty to look into this or offer some advice?

Once set up the test strips could be used to predict and follow the course of an exacerbation or monitor the daily production and peaks during bad episodes to show how this illness really works. If properly timed then different foods, Carbohydrates and Sugars could be better monitored for individual diets (as the Bacteria involved in D-Lactic production may be different; I have already found a number of different D-Lactic producing Bacteria cited in different reports including 2 from the Sheedy report). I wonder if anyone investigated combined Organic acids, because it is possible to have more than one type of Overgrowth simultaneously.........
 

EddieB

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I never found Rifaximin to be the best antibiotic for me
I tried it years ago. Right away it caused terrible nausea and an increase in all symptoms. The doctor felt it was die off and to push through. I made it one week, but did not have any benefit from it.
He later said he felt we didn’t do it long enough.

Was your SIBO test done for both Methane and Hydrogen?
Yes, I did the triple test for hydrogen, methane, and hydrogen sulfide. My Viome and GI map suggested methagens, I had a hydrogen-only test 2 years prior, that was negative also.
But despite, the gastrologist feels there is an overgrowth and wants to treat for it.

But you won't know if Rifaximin works unless you try it.
True. It will probably make me very sick again as it did previously. It could be die off or just the wrong thing for me. It’s impossible to know.
 

Avenger

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I tried it years ago. Right away it caused terrible nausea and an increase in all symptoms. The doctor felt it was die off and to push through. I made it one week, but did not have any benefit from it.
He later said he felt we didn’t do it long enough.


Yes, I did the triple test for hydrogen, methane, and hydrogen sulfide. My Viome and GI map suggested methagens, I had a hydrogen-only test 2 years prior, that was negative also.
But despite, the gastrologist feels there is an overgrowth and wants to treat for it.


True. It will probably make me very sick again as it did previously. It could be die off or just the wrong thing for me. It’s impossible to know.
Hi EddieB,
I found that within 2-3 days that my symptoms would abate using Metronidazole, but then it would make me feel unwell in a different way, but the after effects of weeks to months without symptoms was worth it. Each antibiotic affects you in different ways; and I think that the side effects of Metronidazole worsened over the long period that I used it. But it was always worth it to be symptom free, but symptoms would inevitably come back and I have been trying to find out what is driving the Overgrowth; but there are so many possible factors, even diverticular pockets could allow for some of the Bacteria to be protected or even Biofilms, where bacteria act together to produce a protective layer around colonies of sometimes different Bacteria, which is another method or antibiotic resistance.