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

[ebethc]

@Avenger so we eat dairy ? They told me cut dairy as I'm lactose intolerant , isn't every adult lactose intolerant ?
Is there a place to find out the allowed foods and I cAn pick from
There ? Maybe I can have vegan protein shakes instead of the meat , I bought one of those from Whole Foods , it's a powder but it made me sick too .
I wish I could eat soy, that would solve the problem with the meat . Maybe I can try tofu again .
The strange thing is that I'm so hungry . I wasn't like this , I had no problem never eating breakfast and I skipped lunch 90% of the time and ate dinner . Now I'm a hungry hippo , maybe I've gone crazy . I want to eat bunches of kale and turnips and poatatoes but I stopped the obvious carbs .

I find that fat helps w hunger a lot... the conundrum that i have is that i don't like to eat a lot of animal fat.... I get cans of coconut cream (w no binders or "gums") and eat a couple tablespoons. that satiates hunger. It's really heavy and delicious (like melted ice cream) so it's satisfying. still saturated fat, but at least it doesn't have all the antibiotics, hormones of meat/dairy.

this is brand I use, and I go through 2 cans per month, so $8 total
https://primenow.amazon.com/dp/B01K...JD3&sr=1-2&ref_=pn_sr_sg_2_img_A1UURZ0SEW4JD3

one caveat: a couple of times I got cans that seemed to have all the water evaporated and it was way to thick to eat (usually its separated and I have to shake the can first to get it blended, then it stays creamy). You could just add water, but I returned it... I wouldn't want to buy it online... fyi

 

[Avenger]

Ok, I ate an egg and the inside of my mouth itches and stings . I guess I'm "allergic ".
I'm so flared up it's hard to tell but for once I wasn't itchy in my mouth so yes , seems something with histamine is going on . I'm not allergic to anything aside from vancomycin so for whatever reason , I get a histamine response to a lot of things . Avocado is another

I want to be normal !! Have a life . I'm hungry in some abnormal way .

Hi fredman 7, I want to be normal too! It is really difficult and you have to work within your allergies. But in tackling Bacterial Overgrowth you may also decrease your Allergies:

With any form Bacterial Overgrowth there are two major problems; as you already know, the first is developing Metabolites and Neurotoxins from the direct wast products of the Overgrowth in the Small Intestine not allowing normal digestion.

The second problem is that Bacterial Overgrowths also cause damage to the Gut lining that are associated with both Immune Dysfunction and Allergy.

Bacterial Overgrowth can also cause damage to the Villi in the Small Bowel as in Celiac Disease and associated illness.

A significant number of people with Celiac Disease continue to have symptoms even going Gluten Free! SIBO symptoms mimic Celiac Disease, because it causes similar damage to the Villi and Gastrointestinal lining and can flatten the Villi as in Celiac Disease and cause very similar problems.

These problems will lead to Autoimmune and Allergy problems. Much disease is similarly related to Gut Bacteria dysfunction and Overgrowth in the Small Intestine.


Paul.

 

[Avenger]

I find that fat helps w hunger a lot... the conundrum that i have is that i don't like to eat a lot of animal fat.... I get cans of coconut cream (w no binders or "gums") and eat a couple tablespoons. that satiates hunger. It's really heavy and delicious (like melted ice cream) so it's satisfying. still saturated fat, but at least it doesn't have all the antibiotics, hormones of meat/dairy.

this is brand I use, and I go through 2 cans per month, so $8 total
https://primenow.amazon.com/dp/B01K...JD3&sr=1-2&ref_=pn_sr_sg_2_img_A1UURZ0SEW4JD3

one caveat: a couple of times I got cans that seemed to have all the water evaporated and it was way to thick to eat (usually its separated and I have to shake the can first to get it blended, then it stays creamy). You could just add water, but I returned it... I wouldn't want to buy it online... fyi

Hi, just message fredman 7 with part of my reply to you, but yes you have to increase fats instead of Carbohydrates and Sugars for energy, but working within individual Allergy and problems;

We all have developed slightly different problems, but as in my last post, many problems including Allergy are caused by Gut Bacterial Dysfuntion, Dysbiosis and Overgrowth! Many different diseases including Allergy are related to Gut Health.

Bacterial Overgrowth can also cause damage to the Villi in the Small Bowel as in Celiac Disease and associated illness and cause damage to the Gut lining that are associated with both Immune Dysfunction and Allergy.

A significant number of people with Celiac Disease continue to have symptoms even going Gluten Free! SIBO symptoms mimic Celiac Disease, because it causes similar damage to the Villi and Gastrointestinal lining and can flatten the Villi as in Celiac Disease and cause very similar problems.

These problems will lead to Autoimmune and Allergy problems. Much disease is similarly related to Gut Bacteria dysfunction (Overgrowth or lack of Bacterial Quantity, Species or Imbalance, and Overgrowth in the Small Intestine).

Long term Bacterial Overgrowth will lead to other secondary problems due to reduction in Vitamins including Vitamin K.

Dr. Myhill's beliefs are based upon much of this. She has also produced a book with recipes and her websites have many solutions to many of these individual problems including Allergy. We need Doctors with such insight to run ME/CFS and Fibromyalgia in the NHS; which at present is based upon psychiatric ideology which is very damaging (ignorance and poor thinking). Doctors have little or no training or understanding of these issues, we will have to retrain them.


Paul.

 

[ebethc]

A significant number of people with Celiac Disease continue to have symptoms even going Gluten Free! SIBO symptoms mimic Celiac Disease, because it causes similar damage to the Villi and Gastrointestinal lining and can flatten the Villi as in Celiac Disease and cause very similar problems.

are there any tests for evaluating the health of the villi, etc. or any of the gut problems that we have? I feel like I'm lacking diagnostics to truly monitor any changes or improvements.... I do feel I'm improving, but then something will happen and i'll backslide... Overall, I'm getting better, but I'd like more objective evidence, too..

 

[kangaSue]

are there any tests for evaluating the health of the villi, etc. or any of the gut problems that we have? I feel like I'm lacking diagnostics to truly monitor any changes or improvements.... I do feel I'm improving, but then something will happen and i'll backslide... Overall, I'm getting better, but I'd like more objective evidence, too..

Endoscopy and taking biopsies of duodenum and jejunum.

 

[kangaSue]

I am looking for an underlying cause of Bacterial Overgrowth causing D-La.

Have you had a Doppler Ultrasound or CT Angiogram done of your mesentery arteries at all? A problem causing reduced blood flow (hypoperfusion) to the bowel can cause Chronic Mesenteric Ischemia (CMI) and this can be a cause of elevated levels of d-lactate.

Not only that, CMI can also cause GI dysmotility (including gastroparesis) and malabsorption problems that in turn, can be the cause of SIBO. (Malabsorption can then act similarly to Short Gut Syndrome which is known to cause elevated levels of d-lactate).

CMI can also cause blunted villi tips and crypt atrophy, although that's usually with severe and prolonged ischemia, and that is not often the case with chronic gut ischemia. It is with Acute Mesenteric Ischemia though.

CMI can also be similar to Ischemic Colitis, which is a mostly non-occlusive form of bowel blood flow deficiency, and it's suggested in the medical literature that anywhere up to 30% of cases of CMI are thought to be non-occlusive.

As CMI typically involves only short bursts of ischemia (3 to 5 hours, coinciding with the period of the digestion process), and usually affects just the mucosa layer (which is self repairing), there is often no pathology signs produced to diagnosis it from.

There are a few occlusive causes of CMI that can be picked up with imaging but a non-occlusive (microvascular, or small vessel disease) problem can be more elusive still. The medical literature does suggest that it can be part of parcel of other autonomic dysfunction though and that may best be determined from clinical symptoms and having a positive response to a vasodilator med.

 

[Avenger]

Hi kangaSue,
I have thought about CMI as a possible cause; Gastroenterologists have recently performed a CT with dye, but no Doppler Ultrasound or specified CT Angiogram. I have not had chance to talk to the Gastroenterologist yet. But an earlier CT scan proved -ve for Small Bowel damage.

I have thought about damage to my blood vessel supply in my Small Bowel etc . It would explain a lot and I do get strange very strange heavy heartbeats in this area of my abdomen with pain at times, but it is difficult to tell or disentangle whether the symptoms are D-Lactic because D-La can cause abdominal pain and tachyarrhythms; or whether this is from an underlying cause such as CMI, but it makes good sense.

I only have Gastroparesis after eating Carbohydrates and Sugars (other foods digest without problem). Motility stops at this end with a normal Carbohydrate meal especially in the evening. If they do digest, I am knocked out while digesting Carbs. As a reminder, I broke my diet last night and had to empty my stomach during the night because I choked on reflux food that would not empty from my stomach. I am also knocked out after trying to eat any Carbohydrates or Sugars. A pint of Lager would put me into an abnormal deep sleep around 3/4 to an hour later, presumably until digestion has finished.

My problem when I fell ill in 1999 was that there were so many possible causation's or contributing factors at the point that I fell ill. I will explain my story;

I had long term Non-Steroidal Anti-Inflammatory analgesics for several years before falling ill which caused stomach and mucosal damage (when I fell ill in 1999 I had pain in a number of areas of my Gut including my stomach, but D-La also causes abdominal pain).

I developed an Ulcer but was later found to have a Bowel Perforation in my Colon which was only found after I developed full sepsis. Recent Gastroenterologists have blamed the non steroidal prescription for causing the chain of damage leading to D-Lactic acidosis (both infection and the use of antibiotics can cause Bacterial Overgrowth and D-La). But there were other factors....

I collapsed a disc in my lower back and tore both shoulders, but continued working for years using Non-Steroidal Anti-Inflammatory's oblivious that they mask pain and stop the healing process in all soft tissue. They inhibit the healing process by greatly reducing prostaglandins and proteoglycan synthesis, which may be why my lower back and shoulder pain became serious injuries.

But my Gut would also not been able to repair due to the actions of COX1 and COX 2 inhibitors.

I was a Sculptor working and lifting heavy objects, did building work on three houses and weight trained as a hobby and pushed myself through any pain using Non-Steroidals! I was very naive.

But......

I had a lot of contact with pesticides after working in a loft space (to create a fourth bedroom) that had recently been sprayed (and had previously been resprayed several times). I suspected pesticide poisoning at the time because my symptoms felt like being poisoned (D-Lactic acid acts as a poison, but can feel like flu or an infection).

A week or so before my illness started in 1999 my daughter punched me in my abdomen 3 times as hard as she could (I used to perform the Houdini trick for my daughters for fun. But at 16 she caught me unaware and repeated the blows twice more). She swung into me without warning and it really hurt. Because of Abdominal Pain at the time, I also suspected some form of Gastrointestinal damage. But there were too many possibilities.

It is difficult to know precisely what happened, but CMI is also a possibility. There are so many ways to get Bacterial Overgrowth and D-La. I will have to make sure that there is a CT Angiogram of the blood vessels.


Thank you, Paul.

 

[kangaSue]

@Avenger I was thought to have CMI because of a good response to a nitrate vasodilator med and was diagnosed diagnosed with it a few months later during a colonoscopy that perforated my bowel at a suspect patch of bowel mucosa damage which my GI motility specialist was consistent with CMI.

Prior imaging though showed no narrowing of the mesentery arteries, but I did have a totally occluded left renal vein (which can cause autonomic dysfunction, and chronic fatigue). This wasn't picked up on until a couple of years later though and reading between the lines in the medical literature, anything causing autonomic dysfunction and affects your cardiac output and regulation can cause CMI as a microvascular problem.

I was eventually tested for d-lactate but that was only after I had been on a vasodilator med for over a year and test was negative then.

Have you tried NAC or sodium bicarbonate for the acidosis?
https://cfsremission.com/2015/09/22/approaches-to-d-lactic-acidosis/

 

[Avenger]

Hi,
you have prompted me to turn a suspicion into an email to my Gastroenterologist.

I should have done this sooner, but I had assumed that this would have all been assessed because when I fell ill in 1999, I had dreadful abdominal pain and had told the Gastroenterologist about the blows from my daughter. I developed bad tachyarrhythms and ectopic beats for the first time in my life along with periods of abnormal abdominal pain, which they just shrugged off.

I could feel better or extremely unwell after eating. At some point I developed Hypoglycemia, which I have now put down to Mitochondrial Dysfunction (causing an inability to utilize Oxygen and Glucose at the cellular level) at the cellular level, but all of these issues are complex like finding a needle in a haystack at times. I consider myself lucky to have got this far.

D-Lactic acidosis on its own is complex and I have been wrestling with just getting it under control and trying to reverse it. But this will not be possible unless the underlying cause is found, and CMI is a possibility.

I have used Bicarbonate for Acidosis after failing my diet during an experiment to reverse D-La using Probiotics that had been used by other researchers and Gastroenterologists successfully. It was a 'hair raising experience' even using Bicarbonate and took three to four days to fully stop (I now refuse to go to my local Hospital however ill because of many years of abuse when the illness was dismissed as Somatic when I was repeatedly dismissed and sent home while still very unwell for 18 years expecting to die from the illness).

Concerning the Probiotics, I managed to reverse the condition for 5 or 6 weeks returning to a normal diet over Christmas, enjoying both Carbohydratres and Sugars! But D-La returned and the symptoms went from mild to exponential with Illness, Neurological Symptoms and Slurred Speech within days of feeling unwell. I took this as a failure, but I have to question why D-La reversed at all?

I have recently talked to Dr. Myhill concerning this and she had told me that this was not necessarily a failure, but to remain on the Exclusion Diet and continue using the Probiotics which had made me feel generally much better (I had been using cyclical Antibiotics without and Probiotics for a year and a half; the NHS had banned the use of Prescription Probiotics in the UK, and there was the question of D-Lactic producing Bacteria either worsening or causing D-Lactic acidosis according to some reports). The Probiotics that I used contained both Lactobascillus strains including rhamnosus (recommended by Dr. Myhill on her Website) and Bifidobacterium strains that had been used by Japanese Gastroenterologists.

I still feel that I have benefited from using these Probiotics (just once!) because there seems to have occurred a change in the return of D-Lactic symptoms, which although they have returned using Carbohydrates, seem to be better under control and there is a longer period between getting the symptoms and I have been able to have the odd meal with more frequency, but as two nights ago I still get Gastroparesis to the extent that my stomach will not empty overnight after a normal Carbohydrate meal.

I will try N-acetylcystein as you have recomended. I have been diagnosed with Autonomic Dysfunction and have altered Cardiac Output with Tachyarrhythms at times.

I had put all of this down to D-Lactic acid, but as you have pointed out this may well be secondary to CMI in my case after the blows from my daughter. I will have to get this checked!!!

But for others following this post, there is always an underlying cause to any form of Bacterial Overgrowth and I have found multiple causation's including Diabetes. CMI is a possible cause of disrupted Motility, but output of Hydrogen and Methane Gasses alone from different Bacterial Overgrowths can also affect abnormal transit which can cause Diarrhea or Constipation and there are many other causes that can disrupt Motility or a number of contributing factors.

It is extremely Complex!


Thank you for your post, Paul.

 

[Howard]

Not sure what this all means, but...

Sodium Bicarbonate / Lactic Acidosis?

I just stumbled upon some of my research findings / notes from two years ago that may be of interest.

For the past fifteen years I've experienced multiple instances of sodium bicarbonate causing panic attacks, but I was never able to identify the cause.

Example:

In 2006 I switched my bottled water to Nestle, and then two weeks along I began having mysterious and debilitating panic attacks, coinciding with a strange “fear” sensation.

Sodium Bicarbonate was the only added ingredient and the only change in my diet over that period of time.

Two years later I began eating a particular brand of gluten-free donuts (a lot of them!) and after a period of time, probably a couple of weeks, same thing.

No panic attacks or "fear" between ingestion dates (approx. 2 years). And I had no idea the product contained sodium bicarbonate ahead of time.

Happened again a year later, unknowingly taking in more sodium bicarbonate over a period of time eating gluten-free pretzels.

Doctors recommended psychiatric evaluation and care.


Anyway, here's what I found:

Sorry, don't recall references…. They are on my destroyed former laptop.


“Sodium bicarbonate (albeit as an infusion) has been noted to induce panic attacks in persons who suffer from panic disorders. Although this has not been noted with oral supplementation, it is plausible that in sensitive persons that sodium bicarbonate can induce panic attacks

…


3.4. Panic Disorders
It has been observed that, in response to a flashing checkerboard test, the increase in brain lactate was exacerbated in persons with panic disorders relative to controls[70] and some evidence currently exists to support a link between panic disorder and altered acid:base balance in the brain (specifically, the balance between CO2 and bicarbonate)[71][72] including that when panic attacks are resolved there is a normalization in biomarkers of acid:base metabolism


Furthermore, the amygdala (a brain organ involved in fear, panic, and emotional learning[74]) has been noted to respond to acid stimulation via the ASIC1a receptor[41] which is highly expressed in the amygdala and fear circuits.[75][76] Carbon dioxide (CO2) inhalation is also an experimental test to induce panic attacks which is also thought to be the reason hyperventilation contributes to panic attacks (via increasing CO2 intake relative to O2 intake)[77] and persons with panic disorders are more sensitive to contrlled CO2 tests than healthy controls.


Conversely, acute alkalosis (significant increase in pH and reduction of acidity) is also capable of inducing panic symptoms in research animals[78] and both sodium bicarbonate and sodium lactate are able to induce panic symptoms when infused into persons with panic disorders.[79]


Persons with panic disorders appear to be more sensitive to disturbances of acid:base balance, which appears to be due to signalling through acid-sensitive receptors (and likely a higher sensitivity of acid:base disturbances on these receptors). However, both an increase and decrease of acidity are able to induce panic attacks in those with panic disorders and it is unlikely that sodium bicarbonate has a therapeutic role in this regard (instead, it is possible sodium bicarbonate can actually exacerbate symptoms)

...


Bicarbonate plays an important role in acid-base homeostasis. Of all the buffer systems, the most important for the maintenance of the pH of body fluids is the bicarbonate-carbonic acid system [4].

Bicarbonate plays a catalytic role in fatty acid synthesis..."



And that's all I've got.

Don't know if this helps with anything... but as we've discussed previously, I do believe I have, or had, Lactic Acidosis.


Howard

 

[kangaSue]

@Avenger One other thought of something that can also CMI, SMA (SuperiorMesentery Artery) Syndrome. Blunt force trauma to the abdomen can be a cause of SMA Syndrome, where the SMA compresses the duodenum where it it passes between the SMA and aorta. Symptoms of SMAS can start within a few days of trauma or there can be a delayed onset of more progressive severe symptoms over some months.

I don't see anyone in other forums with this mentioning having issues of elevated d-lactate levels but maybe that's a combination more unique to those who also have ME/CFS.

The duodenal compression may be visible on a CT scan but it can take having a barium swallow to best pinpoint this. It can also require doing the barium test in the standing position to see this compression though as the angle of the SMA/aorta junction becomes narrower still when upright. The left renal vein can also be compressed in this narrowed junction angle (Nutcracker Syndrome) and it's fairly common to have both of these together.

 

[Avenger]

Hi, I had all of these things, just like you are describing.

Aggressive, angry and drunk like/mental disorientation, dizziness is a sign of D-Lactic acidosis. It also makes you very fatigued.

I also felt bad after eating and it took some years to find out that it was all Carbohydrates and Sugars.

You have to cut the Carbohydrates as well as Sugars. You have to get a new mind set to survive this.

It took me a long time to believe, but once i cut the Carbs out I started to feel a lot better.

You have to starve the Bacteria so that they cannot continue to produce the poison which is causing these problems. D-La can cause Constipation or loose stools. Your angry drunk like sounds like D-La.


Paul.

Dear Fredman,
I am not sure if you are in the UK, but I have found a good place to have a D-Lactic assay. They can do Gut Fermentation, permeability, short chain polypeptides, lactulose breath test. All reasonable prices that will not break the bank.

Biolab Medical Unit
The Stone House,
9 Weymouth Street,
London W1W 6DB, UK
Telephone: (+44) 020 7636 5959/5905
Fax: (+44) 020 3808 3058
Email: reception@biolab.co.uk
The laboratory is open from 9am to 5:30pm every weekday (excluding public holidays)

D-lactate should not be confused with L-lactate, which is a normal product of anaerobic metabolism. Unlike the L-form, D-lactate is not metabolised by mammals and its elimination from the body depends mainly on renal excretion.
Patient Instructions:
No special preparation required.
Appointment Notes:
Samples have to be separated and frozen immediately after collection
Clinical Indications:
D-lactate is produced from non-absorbed carbohydrates by colonic bacteria (which may also proliferate in the ileum). The absorption of large amounts of D-lactate can cause metabolic acidosis, altered mental status and a variety of other neurologic symptoms, in particular dysarthria and ataxia [2,3,4]. Its measurement is part of the differential diagnosis of chronic fatigue syndrome [5]. Although a temporal relationship has been described between elevations of plasma D-lactate and the accompanying encephalopathy, the exact neurological mechanisms remain undescribed [6].

Otherwise healthy children with gastroenteritis may also develop D-lactic acidosis.

There are a number of other tests of gastro-intestinal function available from Biolab � the gut fermentation test, the PEG profile (gut permeability), the measurement of plasma short-chain polypeptides and the lactulose breath hydrogen test. Each of these tests provides somewhat different information from the D-lactate test, which is specific for the presence of D-lactate-producing bacteria in the gut (probably Enterococcus and Streptococcus spp. [5]).

Unaffected subjects have plasma concentrations of D-lactate of less than 60umol/L.
Datasheet:
dlactate.pdf (Click to Download)
Sample Report:
rep-dlactate.pdf (Click to Download)
Sample Requirements:
Grey (fluoride/oxalate) tube
Postal Samples Acceptable:
Yes
References:
1. Oh MS, Phelps KR, Traube M, et al. D-Lactic acidosis in a man with the short-bowel syndrome. NEJM 1979;301:249-252

2. Dahlquist NR, Perrault J, Callaway CW, Jones JD. D-Lactic acidosis and encephalopathy after jejunoileostomy: response to overfeeding and to fasting in humans. Mayo Clin Proc 1984;59:141-145

3. Uribarri J, Oh MS, Carroll HJ: D-lactic acidosis. A review of clinical presentation, biochemical features, and pathophysiologic mechanisms. Medicine 1998;77:73-82

4. Hingorani AD, Chan NN. D-lactate encephalopathy. Lancet 2001;Nov 24:358(9295):1814

5. Sheedy JR, Wettenhall REH, Scanlon D et al. Increased D-lactic Acid intestinal bacteria in patients with chronic fatigue syndrome. In Vivo 2009;23:621-628.

6. Lord RS, Bralley JA. Organic acids; products of dietary carbohydrate. In: Laboratory evaluations for integrative and functional medicine, 2nd edition, 2008. Metametrix Institute, Duluth, Georgia, USA, pp 384-386.

7. Ludvigsen CW, Thurn JR, Pierpoint GL, Eckfeldt JH. Kinetic enzymic assay for D(-)-lactate, with use of a centrifugal analyzer. Clin Chem 1983;29:1823-25

For further details please contact the laboratory at: lab@biolab.co.uk


Paul.

 

[Avenger]

Dear Hip, sb4, SamB and those interested id Bacterial Overgrowth and D-Lactic acidosis.

I do not believe my experiment to be a failure. I only used the Probiotics for one month and continued with normal diet including High Carbs and Sugars to test any reversal to its limits (I even shared a tub of chocolate sweets towards the end). I continued off my diet for a further few weeks before I fell ill again.

A successful reversal has been obtained in the report below by using a cocktail of beneficial probiotics (I had only started the experiment. It would be good to find out exactly which were used in this report and I may try contacting the authors). The Probiotics have to be used on a daily basis (they may not proliferate or bind in the Gut. I need to make further investigations).

I now believe that antibiotics are a probable cause of Bacterial Overgrowth or may heavily contribute, but have to be used paradoxically to treat the symptoms that may have been caused by them.

I have spoken to Dr. Myhill who has told me to use the same Probiotics and remain on the diet in combination.

2018 Aug 8.
D-lactic Acidosis: Successful Suppression of D-lactate-Producing Lactobacillus by Probiotics.
Yilmaz B1, Schibli S2, Macpherson AJ1, Sokollik C3.
Author information

Abstract
Intestinal microbiota composition in children with short bowel syndrome (SBS) is an important factor influencing the clinical outcome. An increase of D-lactate-producing bacteria can lead to D-lactic acidosis, also referred to as D-lactate encephalopathy, with severe neurologic impairment. Antibiotic treatments for D-lactic acidosis in children with SBS offer often only short-term relief. Here, we present the case of a boy with SBS who developed recurrent episodes of D-lactic acidosis even under continuous cycling antibiotic treatment. Microbiological analyses were used to detect the presence of D-lactate-producing Lactobacillus species in the stool samples. A probiotic cocktail was introduced to alter the intestinal microbiota. During follow-up under treatment with probiotics, the patient remained stable, and there was no additional need for antibiotic therapy for more than a year. Stool composition of the patient was sequenced regularly over that period. His microbiota profile changed completely in species richness, and a clustering of species according to probiotic usage was seen. Importantly, D-lactate-producing Lactobacillus strains disappeared within a few weeks after probiotic introduction and were no longer detected in the subsequent follow-up specimens.
Copyright © 2018 by the American Academy of Pediatrics.
PMID: 30089656 DOI: 10.1542/peds.2018-0337

Paul.

 

[Belbyr]

I think I am having a little bit of this issue on top of my other illness 'stuff'. I've been in a huge hole these last 8-10 months, worst ever. The only thing I did different before this downturn is I was on antibiotics for 3-4 months for what was thought to be prostatitis but ended up being a nerve. My chronic nausea and bloating got worse. Pain, fatigue, weakness feeling, and insomnia worse as well.

It took me about 4 months to figure out the Gatorades, popsicles, and really high carb food items like pizza and breaded stuff was sending me to the ER time and time again. I finally stopped all that and I'm not going to the ER anymore but still housebound and sometimes bed bound.

Started a probiotic for about a month and it really messed with my bowels. At first it was awesome, then things started falling apart. I could not go to the bathroom. Now after eating a clean diet, slowly increasing fiber, and actually staying off a probiotic has seemed to help things start moving along better. I still have to get my ability to burp fixed because not being able to burp causes so much bloating, pain, and I think maybe even some of my nausea is due to it.

I have since added back in fruit and some watered down fruit juices. All seems to be ok so far about 5 days in.

 

[Avenger]

@Avenger I strongly suspect that I have somatization on my medical record or something similar. How do you go about getting your medical record? Ask the GP?

Hi sb4, sorry no contact for a while. I believe that my diagnosis may be under attack.

My diagnosis seems to have caused a stir and not a good one. I was recently sent to Microbiologist for investigation to find new antibiotics suitable because I have gained resistance, but was seen by a Gastroenterologist while my symptoms were controlled who told me that I did not have the symptoms of Bacterial Overgrowth and did not refer me for further investigations! He actually told me that I did not have bloating and diarrhea, which he believed the characteristic of Bacterial Overgrowth; which is nonsense because 1. There are no symptoms when Bacterial Overgrowth is controlled through diet and or antibiotics and 2. You can have Constipation or Diarrhea with Bacterial Overgrowth and D-La! Either the Gastroenterologist knew very little or this was deliberate.

I had also seen another Gastroenterologist concerning fecal transplant, who told me that he had never heard of D-Lactic acidosis 'should he google it'? He also told me that they see a number of ME patients in clinic who respond to antibiotics, as though this was just a quirk of ME! I am beginning to wonder if they really are that poorly trained or if I am being set up to fail.

I was to have a Hydrogen Breath Test from the fecal transplant consultants, but realized that I would fail it while on my diet, because if I have Bacterial Overgrowth, including abdominal symptoms such as sickness, pain, reflux and bloating, burping up food etc., then I have D-Lactic acidosis. So I tried to use small amounts of Carbohydrates to keep the symptoms mild, but failed and had a bad recurrence and was forced to take antibiotics.

I am beginning to feel that I am being set up to fail. I have just found that my local Path Lab have never been set up to take my bloods for a D-Lactic assay or D-type Blood Gasses during an exacerbation and I am having to fight to have this requested because these are non-standard investigations which need to have plasma separated and frozen within one hour, then sent to Birmingham Children's Hospital for analysis which is the only Lab in the country where this can be performed.

The reason that I have not been in touch for so long is that I am fighting a battle against the NHS who (the long and short) have stated concerning a complaint (concerning a Ward Doctor refused to accept my diagnosis of D-Lactic acidosis after surgery and gave me frequent Sucrose in Oramorph until I became unwell, because my clinical records still contained misdiagnosed Somatization disorder given in 2001 for the symptoms of D-Lactic acidosis). I was told in the complaint reply that they did not need to take my D-Lactic diagnosis into consideration, because it has not been clinically verified. It was not clinically verified by the consultant, because in treating me it cannot be clinically verified until I fall unwell. I was diagnosed on a long history of illness which included breathing difficulty, drunk like and neurological symptoms which respond to antibiotics. But no attempt has ever been made to set up verifying my diagnosis with my local or any Path Lab to take a D-Lactic or Blood Gas assay.

I have been fighting to have this simple procedure set up but it has still not been requested, so I am in a position where I am told that my diagnosis does not have to be taken into consideration because it has not been clinically verified, but at the same time the only clinical verification has never been set up or requested. But I have a confirmed diagnosis from a specialist D-Lactic consultant.

There is a lot more going on because I have taken this to the Ombudsman who has refused to investigate anything to do with the misdiagnosis of Somatization which i have challenged as a Human Rights abuse.

I need a Human Rights Advocate or Solicitor. Anyone interested?

I have recently read that many cases of D-Lactic acidosis may go undiagnosed because they do not reach clinical levels. I do not believe that those with Bacterial Overgrowth or D-Lactic acidosis necessarily produce the same quantities and that Overgrowth may be different in quantity, species and combination of bacteria concerned.....


Paul.

 

[Rufous McKinney]

I am curious: in the paper above (Yilmaz et al.)....what was the specific Probiotic Cocktail the used?

(unable to access full text).

 

[sb4]

@Avenger That's rough. I wish I had some advice but I don't. Anyway you can bring back symptoms then get a private test?

 

[Avenger]

@Avenger That's rough. I wish I had some advice but I don't. Anyway you can bring back symptoms then get a private test?

@Avenger That's rough. I wish I had some advice but I don't. Anyway you can bring back symptoms then get a private test?

@Avenger That's rough. I wish I had some advice but I don't. Anyway you can bring back symptoms then get a private test?

Hi sb4,
the problem is that it is getting difficult to stop the symptoms when they occur. I have no controll to stop a bad exacerbation. I have become resistant to antibiotics and symptoms can quickly escalate out of control. I also have mental difficulty and can become confused during acute illness. It can take three days with diet and it is easy to make mistakes when unwell. The reason for seeing the Gastroenterologists was also to be given help with antibiotics to cycle for emergency. I am going back on the probiotics that I used before, but I am not in a good situation.

Paul.

 

[Archie]

I dont know what all is discussed here, i have briefly looked the whole D-lactic acidosis since i had feeling it might be related to my own condition.

There was this article which says :

"In people with a normal gut, D-lactate produced by members of the gut microbiota – including some probiotics – is metabolized by other members of the gut microbiota and does not accumulate. Thus, under normal circumstances, D-lactic acidosis does not result from consumption of D-lactic acid-producing probiotics."

https://isappscience.org/brain-fogginess-probiotics-not-the-cause/


So would that mean there is just basically mainly only wrong type bacteria , mainly strains that do produce D-lactic acid and same time missing other bacterias that are not producers of D-lactic acid and what actually metabolizes D-lactic acid ,removing it before it start cause problems ?

" Bifidobacterium as a genus does not yield D-lactate as a metabolic end product. Some Lactobacillus species do (Table 19.1 in Pot 2014). Among common probiotic Lactobacillus species, the following are classified as species that can produce D-lactic acid: L. acidophilus, L. gasseri, L. delbrueckii subsp. bulgaricus (one of the 2 yogurt starter culture bacteria), L. fermentum, L. lactis, L. brevis, L. helveticus, L. plantarum and L. reuteri. Individual strains within each species may vary with regard to levels of D-lactic acid produced. "


Could this issue come from unbalanced homeostasis where there is missing critical probiotic strains that are the ones what metabolises D-lactic acid ?

Could having more Bifidobacterium bring balance to the equation ?

 

[Archie]

2 reports of using synbiotics for the D-lactic acid problem :


https://www.ncbi.nlm.nih.gov/pubmed/23701144

https://www.ncbi.nlm.nih.gov/pubmed/30089656