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D-Lactic Acidosis in CFS

Discussion in 'Latest ME/CFS Research' started by Glynis Steele, Oct 9, 2010.

  1. Glynis Steele

    Glynis Steele Senior Member

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    I am a new member, and found these links in relation to CFS, which I think have very important implications. I posted this earlier today, in reply to a member who stated that when he fasted for 3 days, his CFS was hugely improved.

    Dla lasts around 3 days, when carbs are stopped. DLA is normally seen by a gastroenterologist, in patients with a shortened bowel. It would be very astounding for them to think of it in a patient with a complete bowel, and I would imagine they would be skeptical, to say the least.

    The hospital that tests for d-lactic acidosis is Birmingham Childrens Hospital, UK. They test for adults too. They prefer a gastro to be involved, to interpret the test results, however if the test was positive they would notify the sender by phone to tell them. The test needs to be done in a hospital setting, as the blood needs to be centrifuged within an hour of being taken. The path lab at BCH are very helpful, a really nice bunch.

    I get mixed up with micromols and milimoles, the measurements taken, but for example a test of 2.4 would be 2400 with Birmingham Childrens Hospital. Normal dla should be 0-0.25. I enclose some links regarding dla in relation to CFS, and also a link on dla in a short bowel patient, with a good graph of symptoms.

    This first one is from another discussion group, where someone with CFS said they had tested postive for dla. The reading of 2.4 would certainly warrant investigation or treatment by a GI, I think they would be astounded to see it though, as they have a very narrow field of vision regarding dla, they almost exclusively see it in short bowel patients. A GP or other dr would not be trained to see that this is a serious condition, or the implications for treatment.

    http://www.endfatigue.com/forums/viewtopic.php?f=17&t=1271

    This abstract is saying that patients with CFS have bacteria in their stool that are dla producers, and says the symptoms are strikingly similar. I have the full pdf of this, which I have tried to enclose, not sure if it will work as I am a techno-phobe and not good at this sort of thing!

    http://www.ncbi.nlm.nih.gov/pubmed/19567398

    This is a Newsletter from the Breakspear Hospital (private) regarding CFS and d-lactic acid.

    http://www.breakspearmedical.com/files/documents/Issue24Spring2010web_000.pdf

    This is the d-lactic in short bowel paper, with a graph of symptoms.

    http://hkjpaed.org/details.asp?id=577&show=1234

    As I said yesterday, d-lactic lasts up to 80 hours, when you stop eating carbs. It has a circadian rhythm, meaning that it builds up after every meal, peaking in early evening (which I think is why sleep problems are so common in CFS). Maybe cutting carbs out would be a good way of seeing if there are improvements to be had. Also milk sugar counts as a carb, so no milk or soya milk.

    Hope this is useful to you, I think it may be the missing link for CFS.

    BW

    Glynis
    Attached Files
    2009_Sheedy_In_vi.pdf (252.7 KB, 0 views)
  2. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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  3. muffin

    muffin Senior Member

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    Thank you for this info. Very interesting and useful to me.

    Glad you are here!!! Muffin
  4. Glynis Steele

    Glynis Steele Senior Member

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    Attached Files:

  5. Glynis Steele

    Glynis Steele Senior Member

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    Thanks Muffin,

    I have been looking for a reason for my daughters condition (not CFS) for years, and DLA fits her symptoms. When I read about CFS being implicated, I just had to join here and share the thing's I've found. I have read thread's on here that make me even more convinced that perhaps it is DLA. Things such as reduced carb intake improves CFS, dietary interventions such as gluten free, and milk free diets. These are all part of a DLA treatment. Minimally absorbed antibiotics, an IV of sodium bicarbonate and low carb diets are all successful treatments of DLA. Also some CFS patients do suffer from bowel problems, which include constipation. One dla paper suggests that stagnation of the bowel might be a contributing factor. Some people with constipation are unaware of it, as they have symptoms of diarrhoea, but this might be down to the bowel being blocked and you get an overflow of liquid. You can also have soft stool constipation, where a GI cannot feel the blockage as it is not hard. My daughter had this, no-one realised, including myself, as she went everyday. When we trialled metronidazole, a minimally absorbed antibiotic, we were shocked at how much came out (gross I know, sorry!).

    After the recent news article where a viral link was theorised in CFS, I rang ME Research UK and asked them if it was a definate viral link. The person I spoke to said the inflammation they found in CFS patients could just as easily be linked to a bacterial overgrowth.

    The thing is even gastroenterologist's would be skeptical that DLA could be involved in CFS. They only see it in short bowel patients. To see it in a person with an intact bowel would be unheard of, and I think that is where the problem lies. They first see their patient as mentally alert, but who have a diseased bowel. It is easy for them to see the effects of dla on that same patient, once their bowel has been shortened. If they were to see a CFS patient, the link would not be made, and also the symptoms themselves are, I think, more subtle than in a short bowel patient. Outside of gastro's, the relevance is being missed. The fact that it does not show up in a routine blood test does not help either. A d-lactate assay kit would be required. There is a private lab in the UK that offer's the test, but a person would need to attend their clinic, or have the blood taken at a hospital, to centrifuge the blood immediately. The only NHS hospital that I know of that does the test is Birmingham Children's Hospital. I do not know how things work in the US and other countries.

    I hope that some day someone has the test done, and I can finally let this go.

    Hope this is useful.

    Best Wishes

    Glynis
  6. Snow Leopard

    Snow Leopard Senior Member

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    This is an interesting hypothesis. What are the symptoms that are distinctive of DLA?
  7. slayadragon

    slayadragon Senior Member

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    I'm increasingly getting a sense that most probiotics are not very good for ME/CFS sufferers for reasons that I believe are associated with this issue.

    While most people benefit from "lacto" probiotics, this seems like maybe it's not the case for us. Those seem to be proinflammatory.

    In addition, this is what Metametrix says:

    >D-lactate elevation is an exception to the use of probiotics. If you have any tendency for carbohydrate malabsorption, even favorable organisms (e.g. L acidophilus) can grow so fast that your blood becomes highly acidic due to the formation of D-lactate. This condition is revealed by high D-lactate in the urine.

    (Is this related to the issue described in these papers, does it seem?)

    Probiotics that have the potential of being antiinflammatory include VSL#3, MutaFlor (Cheney's recommendation) and ThreeLac.

    I've heard one negative response to VSL#3 though. At least one other person and I have gotten notable benefit from ThreeLac.

    Best, Lisa
  8. Glynis Steele

    Glynis Steele Senior Member

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    The main symptom's are impaired conscious level, which range from somnolence (sleepiness), lethargy, and drowsiness. Other symptom's include changes in gait, slurred speech, sometime's difficulty speaking, inability to concentrate, confusion, clumsiness, nystagmus (flickering of the eyeballs), dizziness, irritability, grinding of teeth, craving carbs, weakness and nausea. DLA build's up during the day, increasing after each carb containing meal and peaks in the early evening, which might explain sleep problems seen in CFS. I have read a thread here where someone stated they had high d-lactate levels in their urine. If this was presented to a gastro, they maybe skeptical, but would run their own test, to rule it out. They cannot ignore a positive test. A healthy human should have a level of under 1mmol/L. Symptoms last for up to 80 hours, when oral feeding is suspended. I have been following a thread where someone on this list with CFS, improved after a 3 day fast (eating about 800 calories per day). I have also read on this list that CFS sufferer's have known to improve when removing gluten and going milk free. To me, that is taking a large amount of carb's out of their diet.

    In patients with a shortened bowel, DLA is caused when carbs that are usually digested become fermented by d-lactic acid producing bacteria. It is only recognised by gastro's in the short bowel patient. From what I can gather, no professional dr is trained to recognise DLA, or the implications of finding it in a test. I phoned a path lab (NHS) in the UK who run the test, and they said a positive test would need to be sent to a GI.

    Treatments include minimally absorbed antibiotics and IV sodium bicarbonate to correct the acidosis, or oral fasting.

    HTH

    Glynis
  9. slayadragon

    slayadragon Senior Member

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    I think it would be preferable to try to crowd out the lactate-producing bacteria with other probiotics rather than to use antibiotics, if that would work.

    Probably this is why the ThreeLac has been helpful to me.

    Best, Lisa
  10. liverock

    liverock Senior Member

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  11. Glynis Steele

    Glynis Steele Senior Member

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    Hi,

    Have you spoken to Dr Myhill regarding the possibility of DLA being involved in CFS?

    BW

    Glynis
  12. Glynis Steele

    Glynis Steele Senior Member

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    Hi Lisa,

    Yes probiotics can induce dla, at least in short bowel patients. I do think there are helpful probiotics out there, but I have kept away from them for my daughter (too much of a scaredy cat!). Not sure which would be good versus making her condition worse.

    This link states that Lactobacillus acidophilus and bifidobacterium spp, added into a feed, were probably the cause of the patients dla.

    http://hkjpaed.org/details.asp?id=577&show=1234

    Has your CFS improved or been cured by the ThreeLac?

    I can quite understand the reluctance to use antibiotics, but together with the sodium bicarbonate, to correct the acidosis, they are the standard treatment for dla. If the dla persisted, a low carb diet is recommended.

    BW

    Glynis x
  13. ukme

    ukme Senior Member

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    Glynis, the article you link to states the following:

    There were different reports regarding the beneficial effect of probiotics. Strain of Lactobacillus GG had been reported to be an effective treatment of rotavirus associated acute diarrhoea.35 In one of our reviewed patient (patient 16) he was given a probiotic with Lactobacillus plantarum 299V and Lactobacillus GG (CAG Nutrition), he remained symptom free during the follow up period.

    My daughter (who has streptococcus infection/leaky gut diagnosis) takes Cuturelle which has lactobacillus GG strain, so I am very much hoping that this is the 'right' one and is not making her worse.
  14. Tammie

    Tammie Senior Member

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    very interesting and really fits with my symptoms and experience.......and everything became substantially worse after I tried probiotics 2 yrs ago (& has not improved since)

    only problem is that I can ONLY eat carbs at this point - nothing else stays down.....am limited to a few fruits and veggies and a few grains - that's it

    and my body has never reacted well to any antibiotic, so I would be afraid to try that......hate IVs but would be very willing to use those if it would help.....have to figure out how to get to a dr (too sick lately to do so) & how to convince said dr to do the testing to find out of this is one of my issues

    also, I am a little confused....is this the same thing as H2S? (similar stuff was written about that)
  15. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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    Not a problem, thanks for the correction!
  16. lucy

    lucy Senior Member

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    Would it be reasonable to think, that if patiens have buildup of plaque in the intestines or if intestinal walls are covered by parasites/bacteria infected mucous, the food passes that part without having been digested properly?. This way, it would be possible to have short-bowel symptoms without having had an operation.
  17. Glynis Steele

    Glynis Steele Senior Member

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    Hi Lucy,

    I have thought about this too. Have you read the autism and specific carb diet theory? Basically the belief is that when bacterial toxins reach a stage that overwhelms the gut, the gut will over produce mucous to protect itself. This leads to an inhibition of digestion, as digestive enzymes are found on the microvilli in the gut, so I believe this may be the link to dla seen in a complete bowel. Of course this is just a theory, but very interesting. I have also read that thiamine deficiency may be involved. Here is an interesting link which talks about thiamine deficiency, although again it's in regard to short bowel patients. I wish I could understand it more, as most of it goes over my head (I am a tad on the short side, so a lot goes over my head!!). Our GI has recently stated that my daughter may have short bowel syndrome, but investigations are not yet underway in any form to find out if this is so. My daughter has an intact bowel, and I have had many heated discussion regarding her autistic traits, carbohydrate malabsorption (which she has not been tested for) and dla. The GI said if she had a problem with carbs she would have diarrhoea, but is constipated and has slow gut motility. I have read that stagnation of the bowel might be a contributing factor to dla.

    http://www.mayoclinicproceedings.com/content/73/5/451.full.pdf html

    Hope you find this useful.

    Glynis
  18. lucy

    lucy Senior Member

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    Hi Glynis,

    I think I figured out how come I have symptoms of short bowel without having had any operation of this kind. Some months ago I was diagnosed with blastocystosis. I tried to research it a little in order to convince my doctor to prescribe a treatment other than flagyl, still fighting there.

    What I found out, that in experiments in rats blastocystis (I am not sure it was hominis, maybe it was the one designated by sp.) reduced the amount of villi in the small intestine. This enables food, which is not properly digested to enter the big bowel and bacteria living there gets things it should not get.

    This also explains why people after b.hominis treatment have little improvement - it takes a lot of time to heal the gut and regrow villi and my theory is that one needs to eat foods with minimum irritation to the bowel.
    In my case it is meat, fish and cooked vegs containing minimum starch.

    I react badly (fever and bloating, resulting in more constipation than diarrhoea) to carbs and also figured out that slow carbs are no better - they slow down the passage of foods and the reaction comes later. I did not know abotu my carb reaction until I stopped eating carbs - I was having fever most of the time for about 8 months.

    Some could argue, that by not giving yourself carbs, you make yourself very selective and have stronger reactions to carbs than before. But in the context of healing the gut, I think it makes sense.
    I already have some small improvement, for example one cookie is now safe for me, no feverish reactions or bloating.

    I was also searching for info about the mucous layers or buildups in intestines. Controversial about buidups, but mucous layers are for sure a reality to me - I can see them atached to feces from time to time. This is common in the inflammatory diseases of the bowel.

    Thank you for the link,

    Lucy
  19. Glynis Steele

    Glynis Steele Senior Member

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    Thanks for your reply, Lucy. Are you treating the blasto with anything other than diet? I go onto several autism discussion groups where blasto has been discussed, and it seems very difficult to shift, but KiB500 seems to be used quite successfully for it. I agree with your theory too regarding how a patient with a complete bowel could develop dla. I believe the gut would try to protect itself by the over production of mucus, when it becomes inflammed, which of course would then cause more carbs to be malabsorbed. Have you read the Pecanbread site? It follows the Specific Carbohydrate Diet, to reduce gut bugs and heal the gut. Unfortunately my daughter has a complex diagnosis and cannot do SCD owing to low blood sugar, and has been hospitalised due to low blood sugar seizures, nearly lost her once, a very scary time!!

    Does your CFS symptoms improve on a low carb diet? I have read that low carb is good for some but not all, and some people are worse when following low carb diets. I'm glad to hear it seems to be helping you.

    BW

    Glynis
  20. Glynis Steele

    Glynis Steele Senior Member

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    I have found another d-lactic paper, see link below, but wanted to point out that in calves with dla, it is caused by a virus causing the villi to become atrophied. I wonder whether this is relevant in CFS.

    " The mechanism is likely similar to that documented for D-lactic acidosis in SBS in humans except the etiology of the malabsorption is viral infectioninduced villous atrophy rather than surgical removal of the small intestine."

    It goes on to say

    "There is a possibility, although it has not been described, that a similar scenario could occur in diarrheic monogastrics, including humans"

    http://jn.nutrition.org/content/135/7/1619.full

    Hope you find it interesting.

    Glynis

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