Cordyceps: Hi all. I wanted to share this site I... - CLL Support

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Cordyceps

RedPandaLS profile image
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Hi all. I wanted to share this site I found of a guy who got his counts fully down by drinking cordyceps tea every day. I’m about to start it.

thankyouglennandjeff.com

Best,

-Matt

Randomised human clinical trial of cordycepin shows no significant difference in lymphocyte or immunoglobulin counts between the treated and placebo groups.

healthunlocked.com/cllsuppo...

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AussieNeil profile image
AussieNeilPartnerAdministrator

See this post just prior to yours for further discussion, including some relevant references healthunlocked.com/cllsuppo...

Neil

Harro8 profile image
Harro8

Hi, thanks for this, I have been drinking green tea but will give this a go. What cordyceps tea do you recommend? Also Tea bag or tea leaves?

CordycepinLuvr profile image
CordycepinLuvr in reply toHarro8

Dried Cordyceps from Peaceful Harvest in Vermont. Here is the link to my website as well as Peaceful Harvest, where it walks you through how to prepare the Cordyceps tea and what to all buy. thankyouglennandjeff.com/te...

Harro8 profile image
Harro8 in reply toCordycepinLuvr

Many thanks.👍

SeymourB profile image
SeymourB in reply toCordycepinLuvr

CordycepinLuvr -

I note that Peaceful Harvest makes no claim for cordycepin content dosage, and that they distribute Cordyceps Militaris, one of the 500 or so species of Cordyceps. Some research may use other species, such as Cordyceps Sinensis, which may not be equivalent.

I checked consumerlab.com, which tests and reviews herbal products, and they have not tested cordyceps yet.

If you know of any other site the tests cordyceps for cordycepin content and purity, please let us know.

=seymour=

Stanandvan profile image
Stanandvan

yes, this is the site I was referring to… there are numerous members that have shown the same results. Good luck!!

AussieNeil profile image
AussieNeilPartnerAdministrator in reply toStanandvan

What has happened to their nodes, spleen and bone marrow infiltration? Measuring the blood lymphocyte count is just the easiest way of measuring just one part of the CLL tumour burden. Without measuring changes elsewhere, we don't know if cordyceps is simply forcing a tumour redistribution to where the CLL actually grows. CLL cells in the blood are in their dormant phase. See healthunlocked.com/cllsuppo...

Also there's the risk of bleeding with low platelet counts among other risks. Please check out the references in the other post.

Neil

CordycepinLuvr profile image
CordycepinLuvr in reply toAussieNeil

I am the person who started ThankYouGlennandJeff.com and the Cordycepin causes apoptosis to the leukemia stem cells (meaning programmed cell death). My most recent flow cytometry test results proves this.

FYI: others on the facebook group that are also doing the Cordyceps have seen their spleen decrease in size. I had no symptoms other than elevated blood markers, as I was at stage zero and on a watch and wait protocol.

This info sounds too good to be true but it’s not (at lease for many of us on Anticancer Thrivers).

Here was my most recent addition to my website:

I received my October 2024 flow cytometry test results and compared them to my results from August 2021, prior to starting my Cordyceps regimen. I’m thrilled to share the progress: My lymphocyte-to-WBC percentage has decreased from 70% to 42%, and my abnormal B-cell count has dropped from 48.94% to 24.14%. Most encouragingly, the findings indicate that the lambda light chain-restricted B-cell population does NOT meet the quantitative criteria for chronic lymphocytic leukemia (specifically, 5000 clonal B-cells per µL).

On Monday, I’ll be speaking directly with the pathologist to confirm the accuracy of these results, but I am 99% certain that I do not have monoclonal B-cell lymphocytosis (MBL) or small lymphocytic lymphoma (SLL) which is what the pathologist said could be the reason for not meeting the CLL criteria, or treatment for the CLL could be the cause. This development strongly suggests that the Cordyceps treatment has played a key role in these improvements, which is incredibly encouraging.

Here is the summary from the pathologist:

Peripheral blood, flow cytometric immunophenotyping: A lambda light chain-restricted B-cell population with immunophenotypic features of chronic lymphocytic leukemia/small lymphocytic lymphoma is identified. However, the size of this population does not meet quantitative criteria for chronic lymphocytic leukemia (5000 clonal B-cells per microL). This could represent monoclonal B-cell lymphocytosis, peripheral blood involvement by small lymphocytic lymphoma, or treated chronic lymphocytic leukemia/small lymphocytic lymphoma (Leuk Lymphoma, 2009; 50:493).

AussieNeil profile image
AussieNeilPartnerAdministrator in reply toCordycepinLuvr

Thanks for sharing your encouraging results. Your CLL 13q14.3 deletion is generally considered to be associated with favorable outcome. Likewise your CD38 negative flow cytometry result is a favourable marker and correlates with a 60% likelihood that you are also IGHV mutated.

Update, thanks for providing your lab test reports on your site, where I note that you have 6.8% IGHV mutated CLL. You have the best possible markers for someone with CLL!

Around 2% of those with IGHV mutated CLL can experience spontaneous regression.

Given my analysis of this randomised human in vivo study, which showed no appreciable difference in blood test results, including lymphocyte and immunoglobulin counts, between participants who daily consumed 2.85 mg of cordycepin and the control group healthunlocked.com/cllsuppo... along with the complete lack of scientific evidence on Pubmed for cordycepin having an effect on B lymphocytes, I would suggest that you have been fortunate enough to have undergone spontaneous remission :)

The website you referenced organicvandalism.com/cll/ refers to this paper; Cordycepin induces cell cycle arrest and apoptosis by inducing DNA damage and up-regulation of p53 in Leukemia cells (my emphasis)

pmc.ncbi.nlm.nih.gov/articl...

So cordycepin is assumed to work like older chemo treatments by causing DNA damage, and is reliant on functional TP53 to work. That means it won't help anyone with 17p del or mutated TP53. However, that research is on myeloid, not lymphoid cell lines.

The abstract states, with my emphasis, Cordycepin, an adenosine analog derived from Cordyceps militaris has been shown to exert anti-tumor activity in many ways. However, the mechanisms by which cordycepin contributes to the anti-tumor still obscure. Here our present work showed that cordycepin inhibits cell growth in NB-4 and U937 cells by inducing apoptosis. Further study showed that cordycepin increases the expression of p53 which promotes the release of cytochrome c from mitochondria to the cytosol. The released cytochrome c can then activate caspase-9 and trigger intrinsic apoptosis. Cordycepin also blocks MAPK pathway by inhibiting the phosphorylation of ERK1/2, and thus sensitizes the apoptosis. In addition, our results showed that cordycepin inhibits the expression of cyclin A2, cyclin E, and CDK2, which leads to the accumulation of cells in S-phase. Moreover, our study showed that cordycepin induces DNA damage and causes degradation of Cdc25A, suggesting that cordycepin-induced S-phase arrest involves activation of Chk2-Cdc25A pathway. In conclusion, cordycepin-induced DNA damage initiates cell cycle arrest and apoptosis which leads to the growth inhibition of NB-4 and U937 cells.

NB-4 is an Acute promyelocytic leukemia established from the bone marrow of a 23-year-old woman accegen.com/product/nb-4-ab... and U-937 cells are a pro-monocytic model cell line used in biomedical research.[1] They were isolated from the histiocytic lymphoma of a 37-year-old male patient in 1974 en.m.wikipedia.org/wiki/U93...

Something else to consider is that chemo treatments for CLL come with a higher risk of secondary primary cancers, such as AML or MDS.

Neil

CordycepinLuvr profile image
CordycepinLuvr in reply toAussieNeil

Thanks for the reply and info!

AussieNeil profile image
AussieNeilPartnerAdministrator in reply toCordycepinLuvr

Now that we've established that cordyceps presumably works through mutagenic action like older CLL treatments such as BR and FCR, I would recommend that you update your website accordingly. You should include a warning that anyone with a 17p del FISH test or mutated TP53 should not take cordyceps, because it will probably not work and could cause harder to treat CLL sub-clones. (Any cordyceps induced DNA damage won't trigger apoptosis because there's no TP53 to up-regulate.)

It's important to appreciate that some successful cancer drugs have been derived from plants and the mechanisms in killing cancer cells are the same, whether by a pharmaceutical product or natural substance. There are the same considerations of contra-indications, effectiveness, off target effects, adverse events and interactions with medications.

Many people in the world don't have access to modern targeted therapies that work without causing DNA damage and others who have access, may not be able to afford them. So perhaps cordyceps might appeal to them, but they need to appreciate the risks involved.

Neil

bkoffman profile image
bkoffmanCLL CURE Hero in reply toAussieNeil

Neil,

I am no cell biologists, but the way I read the article is that cordyceps, at least ex vivo, worked in both p53 dependent and independent ways. While having wild type p53 would be an advantage, as it is with nearly every therapy, it does not preclude the possibility of benefits. Thoughts?

Thanks for bring ingthis up. Stay strong, we are all in this together

Brian Koffman

CMO & EVP, CLL Society

SeymourB profile image
SeymourB in reply toCordycepinLuvr

CordycepinLuvr -

Definitely sounds like you meet the requirements for a current diagnosis of MBL or CLL in at least partial remission. i.e. You still have CLL cells, which may yet adapt to cordyceps, and relapse.

Your bio only mentions WBCs, and not ALC (absolute lymphocyte count). It might be helpful to add the lymphocyte counts, since WBC includes numerous neutrophils and monocytes, which notoriously vary due to time of day, stress, infection, and inflammation.

How's your lymph nodes and spleen? Any ultrasounds to measure them?

=seymour=

Kam73 profile image
Kam73

For me this is a buyer beware. Do you research before jumping on a band wagon.

CordycepinLuvr profile image
CordycepinLuvr in reply toKam73

The fact that I am making zero dollars from anyone who buys anything of my recommendations on my website (same with OrganicVandalism.com) should be proof enough we are just trying to help people. The website actually cost me $12 per month to be able to share this info with people. Sounds too good to be true but it’s not (at least it wasn’t for me). Do your research though. I recommend you join AntiCancer Thrivers on Facebook and go to my post from May 24th 2024 and read the comments. That should sum up anyone’s doubts on Cordyceps. Best regards, Paul

Spark_Plug profile image
Spark_Plug in reply toCordycepinLuvr

Whether or not you are making $0, aside from your "thanks to AussieNeil", I didn't detect any acknowledgement of the documented warning advice he gave you.

In fact, you turn around right after and get defensive in reply to Kam73's opinion. Further, you go on to invite people without publishing any recognition on the other site that there has been cautionary evidence presented about Cordyceps.

You may be just within the line of not promoting, however, I do question if you've really appreciated as quoted from AussieNeil, ". . . that anyone with a 17p del FISH test or mutated TP53 should not take cordyceps, because it will probably not work and could cause harder to treat CLL sub-clones".

Why suppress the additional information? I see no more proof of desire to progress, but rather, holding onto an ideology. 😒

cajunjeff profile image
cajunjeff

I found the anticancer thriving site. It looks like a site designed to promote Sabin’s book sales. You can also buy n of one tee shirts, I cant imagine they sell a lot of those. And according to anticancer website, you can get a wellness consult with Sabin for just under a thousand dollars. Of course, that’s just how I saw the site. I have linked to it below so others can draw their own conclusions if the anticancer thriving site is more a marketing site all founded on an anecdotal story.

glennsabin.com/cancer-coach...

glennsabin.com/2959-2/

The passage below is taken directly from his anticancer thrivers website, and I take it to be a direct criticism of sites like healthunlocked which he describes as being forums for negative discourse on cancer care. I suspect what he really doesnt like about healthunlocked and similar sites is that they are science based and dont consider anecdotal stories as a basis for treatment plans. His description of sites like this one is most unfair and incorrect.

One thing different about healthunlocked and Sabin’s anticancer thriving site is that no one on healthunlocked ever tried to sell me something. Sabin wants people to buy his book, tee shirts and consulting services.

Here is why he says he founded the anticancer site:

After years of being disappointed with virtual support groups and Facebook Groups, I decided to launch Anticancer Thrivers.

Each time I explored a new forum I would first listen, then engage. I quickly learned that most participants were not interested in getting healthier.

These groups were largely created as a forum to discuss drug development, and vent about drug side effects, drugs to combat treatment side effects, various comorbidities, and other struggles. Yes, these are critical issues, but it was mostly reactive, negative discourse on cancer care itself, with nothing to do with health creation.

It’s just under that text where the links are to all the stuff he sells . And we do a hell of a lot more on here than “vent” about side effects and engage in negative discourse. Cll healthunlocked is also a support group that lifts people when they are down and exchanges info on treatment options. And so far no one has tried to sell me a health unlocked t-shirt.

Phil4-13 profile image
Phil4-13 in reply tocajunjeff

TOUCHE!💪, cajunjeff!!!😊Sandra

SeymourB profile image
SeymourB

RedPandaLS -

I've found several papers on cordycepin. Note that cordycepin and cordyceps are not the same thing. Cordycepin is a purified extract from cordyceps. Cordyceps has many complex compounds and chemicals that may aid or inhibit cordycepin.

pmc.ncbi.nlm.nih.gov/articl...

A Systematic Review of the Biological Effects of Cordycepin

Molecules. 2021 Sep 28;26(19):5886.

"However, we identified a total of 32 studies examining the effect of cordycepin on cancer animal models. Different cancers studied included those of the immune system, gastrointestinal tract, liver, breast and lung [11,18,23,24,64,66,74,79,80,107,108,134,142,143,186,187,188,189,190,191,192,193,194,195,196,197,198,199,200,201,202,203]. In most cases, cordycepin suppressed tumour growth, but it did not cause complete regression."

On safety of cordycepin:

"The toxicity of cordycepin in animals has been reported to be low in the absence of adenosine deaminase inhibitors [193,207,231,292], but we did not find any publications with dose escalation studies of cordycepin to several fold the therapeutic dose for intravenous or oral administration. For intravenous doses, this is understandable, as they are limited by the solubility of cordycepin in simple formulations [257]. Three studies with cordycepin administered intraperitoneally have yielded somewhat conflicting results, with one study claiming no adverse effects at 900 mg/kg and another reporting 50% lethality at 400 mg/kg and significant deaths after 3 days of 150 mg/kg daily [185,293]. A third study indicated that three of seven animals suffered weight loss, convulsions and death after a 3.6 g/kg intraperitoneal dose, while the other four survived [243]. Ames tests suggest that cordycepin has very weak or no mutagenic activity [193,294]"

I see 3 clinical trials of cordycepin:

clinicaltrials.gov/search?i...

No papers published, and one trial, NCT00709215. appears abandoned.

I see 22 trials of some form of cordyceps, not necessarily cordyceps militaris:

clinicaltrials.gov/search?i...

No actual anti-cancer trials, but several immune function trials.

Glenn Sabin's book "N of 1" was named that because much higher N's are needed to prove the effectiveniess of something. So he's saying, "it's just me." You could have different results. Notably, most sites using testimonials of success do not have testimonials of failure or adverse effects - which is what clinical trials provide. Nevertheless, the safety data I cited above looks hopeful for cordycepin extract, if not cordyceps tea. I checked PubMed for "cordyceps militaris tea" and "toxicity" and found nothing. A wider search found this concerning preprint:

researchsquare.com/article/...

Acute kidney injury related to Cordyceps militaris: A case series

Posted 13 May, 2022

Like many herbals, contamination is a big issue. Herbals are virtually unregulated for quality in the U.S. USDA Certified Organic does seem like some assurance, but I would prefer to see a review by consumerlabs.com, who test herbals for contamination and dosage of active ingredients, or some other independent, 3rd party reviewer. The kidney injury cited in the pre-print would likely be prevented by proper adherence to USDA Organic certification, but contaminants can form after harvest, usually, fungi.

Best of luck!

=seymour=

RedPandaLS profile image
RedPandaLS

Wow what a conversation I have started! Thank you all for the helpful info. I’ll have to wrap my head around this more. I have mutated Igvh with phenotype CD2- and CD3- so not sure what that means for me with cordyceps. I tried cordyceps once but in tandem with 4g EGCG per day annd I took them semi whole vs ground. Unfortunately I stopped that because my ALT went to 116 and AST 76 with the high EGCG that also left me very nauseous daily but they’re back down again. I am a part of the Anticancer Thrivers group with Paul and wanted to share his story which is why I started this post to try to spread info and hear others experiences/feedback. I think they are a supportive and intelligent group as you all are here. I appreciate everyone looking out for each other. I will say that I don’t think Glenn started that group for money. I have corresponded with him a lot and he has not asked me for anything. Thank you all again for the insights and good info. You all are wonderful :-)

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