Lions Mane, seamoss and shilajin

[Research123]

I've recently been taking lions mane (helps me be more alert) and have read about the health benefits of the other 2, shilajin and seamoss. The last 2 talk of boosting the immune system, which could be a good or bad thing for us CLLers. Anyone know? Thank you.

[cajunjeff]

Research, I think if you google all three of these supplements, you will get similar results as to their benefits and side effects that will sound a bit like this:

1) There is some evidence they might work as claimed, but no such evidence has reached a threshold where the benefits have been scientifically proven.

2) There is some evidence each of these supplements have harmful side effects, but the degree of the side effects and the dosage which triggers the side effects have not been sufficiently tested.

3) That all of these supplements are unregulated and there is really no safe way to know that what one manufacturer sells as lions mane, etc, is the same or even close to the same as what another manufacturer sells as lions mane.

In general, I find that people who are prone to believe in supplements and who are suspicious of mainstream doctors and pharma companies will be drawn to articles and advertisements that promote the benefits of supplements and be more likely to use them. People who are wary of unproven supplements and who trust the clinical trial process fda drugs must complete to prove safety and efficacy will be wary of using these supplements and question their safety.

While I fall in the latter category, I think it’s our bodies, our choice, so people can try what they like.

I do think I can safely predict that no one on here, or at least almost no one, has a recognized top cll specialist as their dr who has recommended lions mane, sea moss or shilajin for their patients. Some people will say they are talking these drugs with their doctors knowledge, but that is not the same as a doctor recommending them. Have you asked your doctor? He or she would be more qualified than me or anyone else on here to answer your question, at least in my opinion.

It is kind of hard to debate the issue with people who claim our doctors do not know everything and could eventually be proven wrong. Of course thats true, but it’s dangerous logic that could have people ignoring all medical advice.

I certainly hope that if you choose to use these supplements that they will work for you.

[Skyshark in reply to cajunjeff]

As ever, a therapeutic dose will kill you!

That's just how chemotherapy works, the dose and number of cycles are as much as the patient can tolerate. Older patients have lower toleration thresholds so had milder BR instead of FC-R or if very unfit Chlorambucil-Obinutuzumab. Due to toleration issues patients that had FC-R on FLAIR trial would stop at 3 or 4 cycles or as soon as they reached uMRD4 and not complete 6 cycles.

[MovingForward4423]

Supplements are always controversial. As long as you are taking the recommended dose from a decent manufacturer, I do not see and issue. If they work for you, then that’s great. I take green tea supplements, no idea if they help but they don’t do me any harm. I also take St John’s Wart, but that does react with BTK and many other drugs. So you need to just check for interactions with any treatments.

[LeoPa]

This is what AI found me on the subject:

"Sea moss is believed to boost the immune system through various mechanisms. Here are some ways in which sea moss may help in enhancing immunity:

Rich in nutrients: Sea moss is a good source of essential vitamins and minerals that support overall health, including immune function.

Iodine content: Sea moss is a natural source of iodine, which is important for thyroid health and immune system regulation.

Antioxidant properties: Sea moss contains antioxidants that help in fighting oxidative stress and inflammation, thereby supporting the immune system.

Prebiotic effects: Sea moss may act as a prebiotic, promoting the growth of beneficial gut bacteria, which in turn can strengthen the immune system."

If there are any effects at all, they are indirect only and there is no proof of any direct benefit.

Even if all of the above was true, I could state why I don't need any of them and why the potential benefit isn't worth the risk. Looks like another ripoff scheme and needless expense. How is a human even supposed to digest sea moss I have no idea. Fish probably eats it, so eating fish more often sounds a good idea.

[sidesy]

It's personal choice and if they work for you good. If you feel side effects don't. Isn't that similar to many of the prescribed treatments we get administered? If you over hydrate it can kill you if you're fit and well ....I know this is an extreme example but for me you'd never take half the drugs if you read the potential complications.

I personally take all of the above and many more holistic medicines ...I've been on and W for 12 months. WBC count is now 160.

I take tumeric, curcumin, lions mane, essiac tea, sea moss ,shilijit and a full spectrum strong CBD (and at night) every day along with cold dips and grounding my feet each morning.

It helps me and that's all I care about.

Good luck in your journey

[cajunjeff in reply to sidesy]

Hello Sidesy, I agree it’s a personal choice. From your previous postings it sounds like you are 57 yrs old, suffer from significant fatigue and that your wbc has gone from 55 to 160 in a years time or so. In what way are all these supplements helping you? I’m over 70, not on any supplements, taking a btk inhibitor that controls my cll, and am very active with no fatigue now. I attribute my current recovery from debilitating fatigue to modern meds (btk drugs) that restored my hemoglobin from 6 to 14 and has my wbc in normal levels after being over 300k. Supplements seems to be taking you in the opposite direction.

I am curious, given your ongoing issues with fatigue and rising lymphocytes, exactly what benefits you attribute to supplements? I have no issue with you taking them. It just sounds like you are very young to have such fatigue and I dont see how the supplements have helped.

The difference for me between supplements and prescribe fda meds is that approved meds are proven to be safe and effective through clinical trials. The benefits of supplements seem more to rely on anecdotal stories, people saying they work for them.

I am certainly no expert on supplements and cant say if they’re work or not. I would take them if my doctors recommended them. Are you taking the supplements on the recommendation of your doctor, or on your own? I’m just curious, I agree 100% with you it’s a personal choice.

[CycleWonder in reply to sidesy]

Sidesy - The CBD may actually worsen your CLL. There is evidence that it causes lymphocytes to hang out in lymph nodes where they are protected by a micro environment that protects them. There are several posts about this if you search HealthUnlocked and then use the filter to focus on “your communities”.

I was successful on improving my sleep by using an app called SleepReset. It was not free but well worth the money.

[Skyshark in reply to CycleWonder]

A reply by AussieNeil in the CBD post he linked to below says CLL cells in the blood are considered "dormant". In the Lymph nodes they are "active" and proliferate. They need stromal cells to set up the micro-environment, for CLL these are mainly in lymph nodes but can also be in bone marrow.

pubmed.ncbi.nlm.nih.gov/329...

I find I get better search results from the sidebar search "Search posts on CLL support" on "Posts" tab of CLL Suppport (access from "My hub", not "Home") compared to the top bar "SearchHealthUnlocked with a "my communities" filter.

[AussieNeil Partner Administrator in reply to sidesy]

Sidesy,

With respect to essiac tea,

"Most of the websites that promote Essiac use opinions not backed up by research. Some of this information is often anecdotal evidence. That means it is based on hearsay.

The Memorial Sloan Kettering Cancer Centre tested Essiac in the laboratory. They found it had no anti-cancer features.

The National Cancer Institute (NCI) in the U.S tested Essiac several times. Their testing found that Essiac had no anti-cancer effects. One study in 2006 found that when Essiac was added to breast cancer cells in test tubes, it stimulated the cancer cells to grow.

In 2009 researchers reviewed all studies into Essiac and Essiac preparations. They found there were no well carried out clinical trials to show that Essiac can help with cancer.

The CAM-Cancer organisation reviews scientific research evidence. In 2011, they looked at all the reviews about Essiac and Flor Essence. They couldn’t find any well carried out clinical studies. They said that some of its ingredients could cause harm.

We need well designed clinical trials to test Essiac and its herbs. Only then will we know if Essiac works or is safe for people with cancer."

cancerresearchuk.org/about-...

With respect to CBD,

healthunlocked.com/cllsuppo...

With respect to turmeric/curcumin

healthunlocked.com/cllsuppo...

As cajunjeff notes "Supplements seems to be taking you in the opposite direction." to what you want for the reasons covered in the above.

Neil

[Spark_Plug]

I believe many new to CLL and searching, and their well intentioned friends and family, forget to look at supplements with the lens of a CLL patient.

A boost in immune system, we've learned, is attributable to increasing our B cells. Do we really want to increase production of more of them?

If you are reading this information on a package, you're reading ad copy; this information was put there to help you make a purchase not help you feel better. Any anecdotal perceived benefit shouldn't disappear when studied clinically - rather it should be verified over and over again. Anything else is placebo at best.

Personally, I don't care, if it gets you through your day take it in good spirits. I do wonder though, why we keep searching for social endorsement?