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Advograf and Mushroom Extract

PostPosted: Fri Jun 16, 2017 4:42 pm
by Aura
Hi All,
Thank you indeed for accepting me as a member in this forum. I am so delighted.

I am a 66 year old male and received a kidney transplant way back in early 2006 and it has been functioning extremely well without any complications all these years. However, I have now developed severe, debilitating peripheral neuropathy after undergoing chemotherapy for multiple myeloma (bone marrow cancer) three years ago.

I have also been prescribed various opiates and pain killers such as Oxycontin, Oxycodon, Reltebon, Neurontin and Lyrica none of which has given me any relief other than severe side effects! I have also been informed that this condition is normally non reversible! However, recently I have read numerous articles where it is claimed that "Lion's Mane Mushroom extract" could improve or even potentially cure peripheral neuropathy!

However, I am not so sure how safe this is since I am on the following kidney medicines;
Advograf .......... 1 x 5mg
Cellcept..........2 x 250mg
Predinislone.....1 x 5mg

I'd therefore be extremely grateful if anyone could give me any advice on the safety of taking this mushroom extract while on these kidney medicines especially on Advograf.

Thank you

Re: Advograf and Mushroom Extract

PostPosted: Sun Jun 18, 2017 2:43 pm
by Tibbs
You must talk to your consultant before taking any new medication. They (or your renal pharmacist) can look into any interactions.

Even if there aren't any interactions, you will need to be very careful about where you source herbal medication. Given that herbal medications are often not regulated, you have no idea what you're actually taking.

Personally, I have big questions about the efficaciousness of any herbal remedies. If they worked, the big pharmaceutical companies would be making it - curing neuropathic pain would be worth billions!

Re: Advograf and Mushroom Extract

PostPosted: Mon Jun 19, 2017 1:52 pm
by Aura
Thank you indeed for your timely warning. In my experience asking my Nephrologist or consultant is quite futile since they seem to have a natural aversion towards anything natural or herbal and always reject these outright Therefore it's impossible to get any unbiased advice from official sources! This may or may not be without good reasons.

Yes, I admit that some of these natural cures may contain nasty heavy metals and other harmful substances which are often not filtered out during manufacture. However, my suspicion is that big pharmaceuticals do have vested interest and since are not unable or prevented from patenting these products as these are derived directly from natural sources that they are not interested. One good example is "curcumin extract", which is derived from turmeric!

However, I have always been very weary and extremely cautious in taking any drug weather natural or approved without proper research.

This particular mushroom extract is supposed to contain the following ingredients

Lion's Mane Mushroom extract*± (Hericium erinaceus)*....1000mg * certified 100% organic
Beta-D-glucans .....................................................> 30%
Starch................................................................< 3%

I was wondering if any transplant patients are preparing and eating mushroom dishes in their daily diet or or not?

Re: Advograf and Mushroom Extract

PostPosted: Mon Jun 19, 2017 3:29 pm
by wagolynn
Erm, the nephrologists opinion appears biased because it doe's not agree with yours, very few of these 'natural' cures have ever been subject to clinical trails.

If you look into the, 'placebo effect', you will begin to understand why many people claim to have good results from
'natural' medicines.

No matter how 'natural' they are the active ingredients are just drugs, of variable dose strength.

Taking these things frequently makes it very difficult to diagnose changes in the condition, with kidney conditions, the medics are trying to create a chemical balance within your body because the kidneys are no longer doing so.

I would, and do, stay well clear.

Re: Advograf and Mushroom Extract

PostPosted: Wed Jun 21, 2017 6:36 pm
by Tibbs
Also look into the term survivor bias. The ones for whom it 'worked' will post lots, those that don't will post less.

This is true for things like pyramid schemes as well.

Re: Advograf and Mushroom Extract

PostPosted: Thu Jun 22, 2017 10:24 am
by Thumps
Your medical team don't have an aversion to anything natural or herbal. They have an aversion to things which have not been tested or proven to work in humans, or that don't have standardised ingredients. They cannot recommend you use something that might cause you harm or of which they have no evidence. That's not bias, it's just good science. They'll sensibly be wary of anything that might put the health of your kidney at risk.

There are some studies regarding yamabushitake extract and its neurogenerative properties but they are small and have only been conducted on rats, so no meaningful evidence of effectiveness on human beings. As such, I don't think you're going to get any approval or support from your medical team to take the stuff. If you choose to do so, please do tell them though in case anything goes wrong!

Have you discussed Lions Mane with your cancer team? Did they have a view?

Re: Advograf and Mushroom Extract

PostPosted: Sun Jun 25, 2017 11:56 pm
by sporti
Hi
The way I see it there is so little information out there about whether this could be dangerous to your kidney that I just wouldn't do it. Mushrooms are heavy on the potassium and whilst after transplant we can basically eat what we like I still am very careful with potassium. Can I ask did your transplant drugs give you myeloma? Good luck

Re: Advograf and Mushroom Extract

PostPosted: Sun Jul 02, 2017 7:24 am
by JMan
Most of the immune suppressive drugs are derived from naturally occurring things. Tac (Advograf) was discovered via the bacteria taken in a fermented soil sample taken in Japan. Cyclosporin has its origins in fungus.

So, would you mix something thats been clinicaly tested and approved, with something that might 'work' but hasn't been tested for strength/effect/side effect.

In the same way grapefruit/starfruit etc can change the absorption rates of many meds.

Avoid or take at your own risk!...

Re: Advograf and Mushroom Extract

PostPosted: Wed Jul 19, 2017 6:43 am
by Aura
First of all my apologies for not responding earlier than this to all your very rational and sensible points raised. I was only waiting for my appointment with my Oncologist which I had a couple of days back, hence thought could include her views too.

You're absolutely right JMan,. When I asked my Oncologist she responded by saying and I quote " but you should be careful with w.r.t your kidney" end quote, yet didn't elaborate but then added " however, even "Prograf is drived from
nature". She then added that she would discuss this with her colleagues and let me know.

My next appointment with the nephrologist is well over a month away and will discuss with him too

Thanks you all again for your invaluable timely warning. I will refrain from taking this mushroom tea until and unless approved by my kidney consultant considering all the risks and perils involved.

Re: Advograf and Mushroom Extract

PostPosted: Sun Aug 13, 2017 6:05 pm
by Nicke
Maybe the thread owner looking for the new fungus poison Orellanine. There is a study to CURE metastazed kidney cancer with it. The one and only ww!
It WILL toast the kidneys on its way to save your life :roll:

http://www.pulsinvest.se/presentation-j ... al-cancer/

http://www.pulsinvest.se/oncorena-secur ... ey-cancer/