Lion's Mane has been recommended to me by a couple of friends as something that counteracts some memory loss. I'm 81, on ibrutinib for CLL almost 3 years. Initially I was sure it was just normal "oldtimers" memory loss, but was recently diagnosed with Alzheimer's.
Like many others, I'm cautious about any medication that may have side effects on the ibrutinib. Has anyone had experience with this remedy, either good or bad?
Happy New Year to you all, may 2023 be kind to us all.
Dan
marksdailyapple.com/diet-al...
Drop wine and whole grains from the healthy food list . Replace them with red meat and butter from the unhealthy list. That's your diet I recommend. Your best shot at slowing A. It is often referred to as diabetes type 3. You don't want to drink wine and eat whole grains if you are diabetic. They increase blood sugar levels and that's a no no. Most of the time it's not about what we have to take to fix or improve a certain condition. It's about what we have to avoid.
Hi CCgroup,
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We had several previous discussions on Lion's Mane and mushrooms as treatment- you can find them on this page in the box marked: Related Posts
*Lions Mane supplement healthunlocked.com/cllsuppo...
*Mushrooms healthunlocked.com/cllsuppo...
*Anyone have input on cancer-fighting mushrooms? healthunlocked.com/cllsuppo...
*Mushrooms and CLL healthunlocked.com/cllsuppo...
*Reishi Mushroom and CLL - My personal experiment results. healthunlocked.com/cllsuppo...
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In general, I believe you will find the consensus is that most of the mushroom lore and the few scientific tests indicate that your lymphocytes might be stimulated, which is the opposite of what we want in CLL.
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Len
Thanks, Len.
Your knowledgeable suggestions are always appreciated. I'm going through the whole list.
I am always amazed and what a fabulous resource this CLL site is. I was wandering in the dark until I was introduced to it.
A doctor friend has recommended I contact another doctor here in Costa Rica who has moved his operation in stem cell research here as it is not approved in the US. His research is focused on using stem cells to head the lesions in the brain that they feel cause Alzheimer's. It will be interested to see how he is doing with it.
All the best - Dan
Hi Dan,
There are tremendous efforts at trying to use stem cells, but the challenge is how to get the introduced stem cells to take over vs. the ones already present in the marrow.
For CLL patients a SCT (Stem Cell Transplant) has about a 30% chance of curing CLL, unfortunately 30% fail due to the immune system treating the new cells as invasive and killing them, 30% have an issue where the two different cell populations battle each other to cause GVHD (Graph vs Host Disease) and for the last 10% the patient doesn't survive the procedure.
We all hope that the doctors can find a way to tip the balance to improve the cure rate and lower the fatalities & GVHD rates.
Many of the efforts for things like Lupus and Sickle Cell are aimed at genetic modifications of cells - either stem cells or using a virus to change mature cells- like our CAR-T methods.
Len
Thanks Len.
The question on Lion's Mane and the meeting on stem cells were both aimed at the recently diagnosed Alzheimer's. Apparently Lion's Mane has had good success with memory, but I'll not chance it because of the ibrutinib. The stem cells sound more interesting. They can apparently use them to heal internal cuts, and his research is healing the lesions in the brain that do the memory disconnects of Altzheimer's. I'm looking forward to meeting the doctor in charge of the research.
Cheers
Dan
The whole area of mushrooms in CLL is complicated and most (all?) of the literature is not specific to CLL and is mostly in cell lines or rodents. I think we all agree that saying it stimulates the "immune system" or lymphocytes is a simplification as it seems to modulate the system like other "adaptogens". I am really not sure of its risks versus benefits as the effect on BAX/BCL-2 ratios and cytokines seems promising, but some of Len's references and folk's anecdotes are worrisome. I have an anecdote from an MD of his CLL melting away with Loin's Mane. Reishi and Turkey Tail also pique my interest. I have been taking all 3 them, but Len has given me pause. Is there any literature in CLL? Would like to learn more,
I do take EGCG, curcumin, quercetin, and Vitamin D, but DO NOT recommend others follow in my footsteps. I have zero proof they are helping me, but I also have no proof that meditation, HIIT, weight training, vigorous walks in nature, intermittent fasting, cold water plunges, and an organic fish +vegan diet help, but I do all those too.
Frankly TCM and other alternative approaches did zero for me, but ibrutinib and CAR-T sure kick my CLL.
Thanks, bkoffman. It was for memory loss I was interested, but I don't think it is worth the risk.
Dan
Chronic Lymphocytic Leukemia Therapy Guided by Measurable Residual Disease
STATIC dilemma
Clemastine (Tavegyl), an over-the-counter drug, found to be effective at inducing LMP and cell death
Doing well on 140mg ibrutinib capsule for past 9 mosDr. John Allan - Chronic Lymphocytic Leukemia (CLL) Patients @Undetectable Measurable Residual Disease (MRD) after Ibrutinib Plus Venetoclax
