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CLL Support Association
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Probiotics for CLL patients

I had CLL diagnosed two years ago. It has remained at a low level so far. I also suffer from IBS, and probiotics as well as active yogourts are recomended for this. Does anyone know if these are not suitable for LCC just as live vaccines are not prescribed. ?

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I also was having problems with IBS.

Yes I tried probiotics and live yogurts, but these had no effects on either my IBS or the CLL.

I removed much of the IBS problem by reducing the bilirubin level in my blood. A change of diet and an increase in the exercise levels, made big differences. Since then the IBS has faded away and the CLL white blood cell count increase has slowed significantly.

CLL is a heterogeneous disease and we are all different, so most probably the only way is to slowly try a few amounts of probiotics or yogurts and also a change of diet. What worked for me is not necessarily going to work for everyone.

However with a little effort and some gradual changes there is no doubt that we can improve our situation. This might keep the CLL at bay for some years, or at least make us fitter and better able to withstand the eventual treatment for our CLL.

Dick

PS Ask your doctor for a bilirubin level check, it is a simple cheap lab test on blood, and only takes an hour or two.

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You should seek the guidance of your doctor, he is the best judge of your immune state. Probiotics can cause problems in the immunocompromised patient. While they can be of benefit for treatment of things like C.difficile, there can be a risk ...

ajcn.nutrition.org/content/...

Good overview here

medscape.com/viewarticle/73...

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Thanks for your comment. You have answered my particular point about any adverse effect probiotics might have, and I will query with my GP. I do of course have a variety of medication for the IBS, but with indifferent effect.

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Hi Dick, Thanks for your response. Good to hear you have managed to get rid of your IBS. Although not as bad as our cancerous CLL, IBS is a very debilitating condition. I have not heard about bilorubin before, but will check it out with my GP.

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Hi Wolflein,

Yes a high Biliruben level is a known cause of IBS.

Of course if the bilirubin level gets significantly high then you get the yellow jaundice look.

But I did not have yellow jaundice eyes, but the bilirubin was high enough to cause problems.

Dick

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How did you change your diet to reduce the Biliruben and what is it? Is it a mineral or vitamin?

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The yellow colour of jaundice is bilirubin... also the yellow in urine... bile etc.

en.wikipedia.org/wiki/Bilir...

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Reading the article below about the growing evidence for benefits from probiotics in healthy patients encouraged me today to look into what's appropriate for us. After all, we are more likely to be on antibiotics and thus have our gut microflora adversely impacted.

I've had IBS for much of my life following strong antibiotic treatment for peritonitis and subsequently psuedomembraneous colitis. Like wolflein, I have found medication to have "indifferent effect" which puts it well. I found peppermint tea probably as good as any over the counter medications, but avoiding stress and diet changes have helped the most and IBS is now rarely a problem.

"A growing body of scientific evidence suggests some commercially available probiotics are effective, while others don’t lead to the claimed health benefits. The problem is telling them apart."

theconversation.com/health-...

The ACJN paper Chris referenced - ajcn.nutrition.org/content/... provides an excellent summary of the risks faced by immune compromised patients (that's us to varying degrees) from probiotic bacteria getting into places where they shouldn't (like our blood stream) - a process called translocation and which can cause sepsis.

As is noted in the PubMed article: ncbi.nlm.nih.gov/pubmed/183...

" Cases of probiotics from the genera Lactobacillus, Leuconostoc, Pediococcus, Enterococcus, and Bifidobacterium have been isolated from infection sites, leading to the postulation that these probiotics can translocate. Probiotic translocation is difficult to induce in healthy humans, and even if it does occur, detrimental effects are rare. Despite this, various reports have documented health-damaging effects of probiotic translocation in immunocompromised patients."

So it seems its a case of tread warily and with expert medical guidance, so that you can get the benefits without putting yourself at risk.

Neil

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Dear Neil,

I so admire your intelligence and curiosity when it comes to CLL knowledge and investigation. You have a very even handed and grounded way at looking at the facts from both sides. Words are powerful and you do such a great job with helping all of us try to navigate the CLL maze. Thank you for all of your wonderful informational links and positive heart.

Kathy

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