Thoughts on Medicinal mushrooms and fermented ... - CLL Support

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Thoughts on Medicinal mushrooms and fermented foods.

JLD1969 profile image
9 Replies

Hi, I am interested in opinions regarding the benefits of medicinal mushrooms and fermented foods to support the immune system. I have recently been diagnosed and I am looking at implications of consuming “mold/bacterial” foods versus their potential benefits. Any thoughts or experiences? Thanks

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JLD1969 profile image
JLD1969
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9 Replies
lankisterguy profile image
lankisterguyVolunteer

Hi JLD1969,

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Many newly diagnosed ask similar questions, and in most cases our CLL expert doctors do not recommend stimulating the immune system since it may increase the production of more CLL cells.

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for a great general response about supplements or foods to treat CLL see this reply a few minutes ago from AussieNeil healthunlocked.com/cllsuppo...

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For specific discussions about mushrooms please see the box on this page labeled:

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Len

LeoPa profile image
LeoPa

In my opinion what you do not eat is way more important than what you do eat to stay in shape and control diseases. Just like you cannot out exercise a bad diet you cannot out compensate a bad diet with eating some kimchi and mushrooms. I focus on not eating stuff (or at least minimizing it) that is known to be harmful.

JigFettler profile image
JigFettlerVolunteer in reply toLeoPa

Interesting perspective LeoPa.

Rather than focus on the good stuff, know the bad stuff and avoid. Seems obvious, good "cognitive" advice.

Thanks!

Jig

JigFettler profile image
JigFettlerVolunteer

I wouldn't!

Do you have evidence for the benefits?

If you do please share.

In the absence of properly evaluated evidence I would counsel don't. What if it made things worse?

Do remember how our immune systems work. When we ingest, inhale or somehow give a foreign substance access to our body our immune system must decide if its safe or if it needs destroying like a virus or a bacteria.

I wonder how allergies arise, my friend must avoid gluten, another has just become anaphylactic to hornet stings.

I have just developed episodic angio-oedema, and have no clue, yet, why. But it has ruined my summer.

Best stay safe.

Jig

Goopteal profile image
Goopteal

As Len said, we want to avoid over stimulating the immune system. When I was first diagnosed in 2022, I started taking colustrum supplement pills. Then, a friend with cancer recommended a naturopath who specializes in oncology (preventing cancer and aiding the effectiveness of conventional cancer treatments while minimizing negative side effects.) She has been wonderful, and she is an accepted part of my care team, along with a newly acquired CLL specialist. I recommend you get both a specialist and a qualified naturopath. Conventional doctors have very little supplement and/or nutrition education. They rely only on medical research, but there is research and experience in the natural world that is also time tested. Right now, as recommended by my naturopath and approved by my specialist, I take Reishi mushroom pill supplements (2 pills in Am & 2 in pm). I was advised by my naturopath not to take probiotics (I have not asked about fermented foods). As I am on antibiotics because of a recent bout with hemolytic anemia, I am consuming either Kefir or grassfed or organic yogurt in the evening to maintain a healthy gut. My specialist approves. I believe strongly in diet and supplementation, but you need experienced direction — and you need to check with your specialist. Each of our bodies and CLL journeys are different. Wishing you the best.

skipro profile image
skipro

Ingesting fungi can cause infections in CLL patients.

My daughter is certified in using medical mushrooms to treat depression but has not seen any data on helping the immune system.

AussieNeil profile image
AussieNeilPartnerAdministrator in reply toskipro

I assume that this is pretty rare, but from this week's Allergy/Immunology update from the New England Journal of Medicine; nejm.org/doi/full/10.1056/N...

"Shiitake dermatitis occurs after consumption of raw or undercooked shiitake mushrooms. The characteristic streaky rash — also known as flagellate erythema — may also be seen after exposure to bleomycin or, in rare cases, in dermatomyositis or adult-onset Still’s disease. A dietary history clinches the diagnosis. The patient was reassured about the self-limited nature of the condition and was advised to fully cook shiitake mushrooms in the future."

Neil

Entire back covered in rashes - you'd think the person had been given a severe whipping!
skipro profile image
skipro in reply toAussieNeil

wow!

andysnat profile image
andysnat

I have never heard of medicinal mushrroms seriously spoken of in relation to our condition, (or any other) So I'll make no comment other than to note it is not suggested by my CLL Specialist, nor any other in my own 15+ years CLL journey.

As regards fermented foods I note somebody has already noted kimchi, (lovely) so I'll note that I love commercially available saurkrout (sp), but if I was offered home made fermented food by friends I would have to refuse as being too dangerous for my condition.

YMMV

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