• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Probiotic

Messages
75
customprobiotics D-lactate free formula is a good place to start.
Also avoid L.Acidophilus (now also known as L. Gasseri). That species is known to product D form lactic acid
If taking Activia B.Regularis works for you then it means that u need more B strains (large intestines) and not L strains (small intestines).

What's the reason to your recommendation on customprobiotics D-lactate free formula?

If you have a research or other serious document relating to L.acidophilus I'd like to read it. What are the implications of producing D form lactic acid? I think that because many processes have more than one direction of effect, it's essential to consider the chances to and implications for possible positive reactions versus negative ones when we use external treatments.
 

Glynis Steele

Senior Member
Messages
404
Location
Newcastle upon Tyne UK
thanks undcvr....I looked into the customprobiocs and there does seem to be a uk supplier...not cheap...do you have a reference for the acidophilus producing d lactic acid thing?
do you have any thoughts on the primal defense soil stuff?

Hi,

just thought I'd give you a link regarding the query above. Scroll down to "Pathophysiology of D-lactic acidosis" and it mentions L acidophilus. Notice streptococcus is also mentioned as a d-lactic acid producer and this bacteria was found in stool samples of CFS patients, in the Sheedy paper. This study is being investigated further and d-lactic acid levels are being checked in CFS patients in an Australian study.

http://pmj.bmj.com/content/79/928/110.full
 

Glynis Steele

Senior Member
Messages
404
Location
Newcastle upon Tyne UK
What's the reason to your recommendation on customprobiotics D-lactate free formula?

If you have a research or other serious document relating to L.acidophilus I'd like to read it. What are the implications of producing D form lactic acid? I think that because many processes have more than one direction of effect, it's essential to consider the chances to and implications for possible positive reactions versus negative ones when we use external treatments.

Hi Rachel,

D-lactic acid producing bacteria was found in higher than normal amounts in stool samples of CFS patients. Here is a link to the study.

Abstract

Patients with chronic fatigue syndrome (CFS) are affected by symptoms of cognitive dysfunction and neurological impairment, the cause of which has yet to be elucidated. However, these symptoms are strikingly similar to those of patients presented with D-lactic acidosis. A significant increase of Gram positive facultative anaerobic faecal microorganisms in 108 CFS patients as compared to 177 control subjects (p<0.01) is presented in this report. The viable count of D-lactic acid producing Enterococcus and Streptococcus spp. in the faecal samples from the CFS group (3.5×107 cfu/L and 9.8×107 cfu/L respectively) were significantly higher than those for the control group (5.0×106 cfu/L and 8.9×104 cfu/L respectively). Analysis of exometabolic profiles of Enterococcus faecalis and Streptococcus sanguinis, representatives of Enterococcus and Streptococcus spp. respectively, by NMR and HPLC showed that these organisms produced significantly more lactic acid (p<0.01) from 13C-labeled glucose, than the Gram negative Escherichia coli. Further, both E. faecalis and S. sanguinis secrete more D-lactic acid than E. coli. This study suggests a probable link between intestinal colonization of Gram positive facultative anaerobic D-lactic acid bacteria and symptom expressions in a subgroup of patients with CFS. Given the fact that this might explain not only neurocognitive dysfunction in CFS patients but also mitochondrial dysfunction, these findings may have important clinical implications.

Full article http://iv.iiarjournals.org/content/23/4/621.long

D-lactic acidosis is usually only seen in short bowel patients, where carbs are fermented by d-lactic acid producing bacteria. The d-lactic acid crosses the bbb and causes neurological changes said to be similar to CFS symptoms.

Here is a link to the application form (which also has info you might be interested in reading) for the next stage of the study above, where they will be testing d-lactic levels in CFS patients, in blood, urine and stool samples.

http://sacfs.asn.au/download/Lactic acid study 2008 - Ethics Application.pdf

hth.
 
Messages
75
customprobiotics D-lactate free formula is a good place to start.
I didn't find in the text that taking D-lactate can help to the D-lactic acidosis problem. Where can I find essential information about effect of D.lactic and Activia B-Regularis on that kinds of situations? Did someone recommend you about it?
 

undcvr

Senior Member
Messages
822
Location
NYC
Most of what I take and find out is research i do on my on. First of all Activia's B.Regularis is nothing special it is just a patent name for one of the Bifidum bacteria strains, anaerobic strains that inhabit the large intestines.
About D-lactate specifically helping the D-lactic acid problem, it is purely speculation and theoretical based on the a few other studies that I have seen on the web that are similar to the one that Glynis Steele posted the link here for.If you raise the probiotic count for the other d lactate free strains they will crowd out the d lactate producing ones.

I can tell you that I am now taking that formula and it is helping me alot. I don't have many cfs symptoms anymore.I take several other supplements as well though.

One suggestion to bring the cost of the D lactate free formula dwn is to buy a yogurt maker. 2 cups of fresh non fat milk can be innoculated with 1/8 tsp of the d lactate free formula and left to ferment overnite. The 2 cups of yogurt you have in the morning will have a probiotic count far and way higher than anything you can ever buy from the store. It will also make the d lactate free probiotic product last 6-8 months, bringing your cost down quite a bit compared to just taking it straight from the bottle.

Another thing that has come to my notice is products like Nutricology's Russian Immune Choice and Del Immune V. Products that are supposed to contain specifically lysed ( enzymatically cut ) probiotics. You don't specifically need to spend so much money and buy these products but instead take your probiotic with a digestive enzyme like pancreatin.
It will cut the probiotics similiarly.
 
Messages
75
I just checked my urine test I did 4-5 years ago and the level of the lactic acid is normal and even low inside the normal. Other organic acids were too high. Does somebody know if this test's diagnose sufficient to determine the lactic acid in the body?
 

Glynis Steele

Senior Member
Messages
404
Location
Newcastle upon Tyne UK
Hi rachel,

Unless the urine test was looking specifically for d-lactic acid, then your test probably looked l-lactic acid.

However, high levels of lactic acid would suggest a further test for d-lactic, as normal testing does not differentiate. However your lactic levels were within normal limits. Can you remember whether your urine sample was a morning test, as d-lactic builds up during the day, after each carb containing meal. For urine testing, it is best to look at late afternoon, early evening levels of lactic acid. If these levels are high, then a further test to look at d-lactic is suggested.

With regard to blood tests, again it does not show up in routine testing, and must be specifically tested for. A GI is the normal specialist who would look at this, but only in short bowel patients.
 
Messages
75
Hi,

This test looked for both kinds of lactic acids and the collected time was 08:00 AM. I guess that was their instruction.

A GI is the normal specialist who would look at this, but only in short bowel patients.
I'm afraid I didn't understand this sentence.
 

Glynis Steele

Senior Member
Messages
404
Location
Newcastle upon Tyne UK
D-lactic acidosis is said to be quite unusual, and seen mostly in patients who have had their bowel surgically shortened. If these patients develop d-lactic acidosis, the monitoriing and treatment of the d-lactate usually falls to their GI, or at least that is what my daughter's GI told me.

In my head, the patient would attend ER, however the GI said the patient would be passed onto the gastro specialist, whether this is right I don't actually know.
 

sianrecovery

Senior Member
Messages
828
Location
Manchester UK
Most of what I take and find out is research i do on my on. First of all Activia's B.Regularis is nothing special it is just a patent name for one of the Bifidum bacteria strains, anaerobic strains that inhabit the large intestines.
About D-lactate specifically helping the D-lactic acid problem, it is purely speculation and theoretical based on the a few other studies that I have seen on the web that are similar to the one that Glynis Steele posted the link here for.If you raise the probiotic count for the other d lactate free strains they will crowd out the d lactate producing ones.

I can tell you that I am now taking that formula and it is helping me alot. I don't have many cfs symptoms anymore.I take several other supplements as well though.

One suggestion to bring the cost of the D lactate free formula dwn is to buy a yogurt maker. 2 cups of fresh non fat milk can be innoculated with 1/8 tsp of the d lactate free formula and left to ferment overnite. The 2 cups of yogurt you have in the morning will have a probiotic count far and way higher than anything you can ever buy from the store. It will also make the d lactate free probiotic product last 6-8 months, bringing your cost down quite a bit compared to just taking it straight from the bottle.

Another thing that has come to my notice is products like Nutricology's Russian Immune Choice and Del Immune V. Products that are supposed to contain specifically lysed ( enzymatically cut ) probiotics. You don't specifically need to spend so much money and buy these products but instead take your probiotic with a digestive enzyme like pancreatin.
It will cut the probiotics similiarly.[/quote



think that would work with coconut milk? I am intolerant of caesin. My attempt at kefir never worked with non dairy products
 

undcvr

Senior Member
Messages
822
Location
NYC
I don't know about coconut milk but I have done it with soy milk before and it has worked. The main step wud be to pastuerise the product before adding the probiotics. If you used coconut milk from a can that would be a good substrate cos canned products are pasteurised. The probiotics would need a source of sugar to convert the coconut milk though. So maybe 1/4 - 1/2 tsp of honey or frutose to 2 cups of coconut milk ?

For most non dairy products you would still need a source of sugar similiar to lactose for the probiotics to grow. If I am not mistaken L.Plantarum is the most common probiotic found in Kefir products. It is not strictly a probiotic as it does not occur naturally in gut colony. It is also a D lactate forming probiotic.
 

undcvr

Senior Member
Messages
822
Location
NYC
Yea I don't like it. It has Plantarum and Gasseri in it (new name for Acidophilus). In general I would like a product to have more of the B. strains in it first, like Jarrow EPS which I think is a very good. product. The L. strains can wait as I think most of the gut dysbiosis is happening in the large intestines. You can tell if you have diarrhea, constipation or flatulence, your large intestine is having trouble regulating the intake of water. Only the B. strains will help in the large intestines. When you settle that you can take a supplement which has both L. and B. strains later but still avoiding Plantarum and Gasseri as much as you can. I would avoid Kefir and Kombucha completely if you have cfs like gut symptoms. They are not native human gut flora and can add to your gut burden. Kombucha's are actually a SCOBY ( a symbiotic colony of bacteria and yeast ) so anything goes in this one. Anything and everything can occur in the mother they use to make kombucha. In general you do not want yeast in your gut. Also you know that your kombucha has yeast in it bcos it is effervescent. Healthy pple will have no problems with such products but cfs patients will not be able to tolerate them.
 

sianrecovery

Senior Member
Messages
828
Location
Manchester UK
that is really interesting, and makes complete sense. I dont do well with yeasts per se, and ditto molds - I even find the amount of by product you get from sprouting mung beans screws up my gut - now I know why
 

undcvr

Senior Member
Messages
822
Location
NYC
The only known yeast product that I know of that can be tolerated by PWC is brewer's yeast powder. In this form all the yeast is killed off and broken up. It is actually a good source of dna/rna fragments that can help.
 

Glynis Steele

Senior Member
Messages
404
Location
Newcastle upon Tyne UK
Glynis, what do you think about taking probiotics?

Hi sianrecovery,

I have to point out that I do not have ME/CFS. My daughter has autistic traits and I found myself here when I started looking for answers as to why carbs caused these traits in her. I read the de Meirleir/Sheedy paper on CFS and d-lactate and decided to hang about here, until the results of the follow up paper are published.

I am really not sure about probiotics. I know that in the autistic community they seem to help some kids, and from what I can gather, some CFS patients benefit from them too. The thing is that it seems they do not help everyone. My daughter was extremely sick when we tried her on them, and as she was tube fed at the time, and vomited her tube out, we decided to stop them. Too scary! The same for CFS patients, whilst some people see improvements in gut problems, others seem worse when on them. On some forums for autism, they caution trialling them very slowly, by opening a capsule, and emptying a tiny amount into a mashed banana, or juice, and build up very slowly, over a period of weeks.

Sorry that I cannot say anything more helpful.