Hi Bighairydel,
I also heard about Hericium erinaceus from Paul Stamets, and since a friend of mine has progressive MS (first diagnosed in 2008), I thought I’d do a bit of research and see if it would help him. When he started H. erinaceus he had very limited movement, couldn’t stand and had no movement in his left leg at all, as well as bladder control problems.
He’s been on 3g/day of water-soluble Hericium erinaceus extract for two months, though in the last ten days this has increased to 5g/day (following Tanaka A, Matsuda H. “Expression of nerve growth factor in itchy skins of atopic NC/NgaTnd mice”). He weighs 100kg, so this is 50mg/kg/day. I would say that I don’t believe the combination pills that contain small quantities of this mushroom will be effective – one I saw only contained 35mg of it. Also, it’s much cheaper to buy the powder and put it in capsules oneself.
Less than a month after treatment began, he reported much reduced fatigue and greatly improved bladder control. Yesterday, after two months’ treatment, he reported that when putting on his socks in the morning, his left foot and toes moved – which had previously been immobile for some time. He demonstrated this to me. Also, I’ve noticed he seems perkier and is showing less drooping of the head when tired, although he has said his general mental health has not altered. Since he has progressive MS, this seems to me like a significant event, although I am not a doctor and am reserving judgement.
I’m currently looking into another mushroom, Phellinus igniarius, which is discussed by a doctor from the States called Trent Austin in an online GeneFo video. There is a paper on this which you can look up: “A Mushroom Extract Piwep from Phellinus igniarius Ameliorates Experimental Autoimmune Encephalomyelitis by Inhibiting Immune Cell Infiltration in the Spinal Cord”. Since the only source of dual-extract (i.e., combined water and ethanol extraction) mushroom is from a company in China, I will be carrying out a heavy metal analysis on the sample they are sending, as Paul Stamets has warned that (a) there is a lot of pollution in China; and (b) mycelium can transport toxins into the fruiting body (the mushroom). However, I expect it to be safe and will be suggesting a similar dose to that of Hericium erinaceus. This mushroom is seemingly neuroprotective rather than neuroregenerative like Hericium erinaceus, but the point of this is that if it prevents destruction by the immune system of myelin, it should theoretically allow the natural myelin production in the body to work at an increased rate, and would also potentially boost any effect that Hericium erinaceus may have. Trent Austin relates a very positive outcome in a patient of his to whom he prescribed a combination of these two mushrooms, although he was only using a water-soluble extract of Phellinus igniarius.
I appreciate a lot of this is anecdotal (i.e., non-scientific in the true sense), but the scientific papers are real, even if they are only limited in scope, are generally on non-human subjects, and haven’t been replicated. However, if I see continued improvement in my friend’s MS I am going to try to push for a clinical trial. The costs to human wellbeing and the broader economic costs of MS seem to demand that even dubious treatments should be trialled. To this end I am interested in any anecdotal evidence relating to either of these mushrooms or mushroom extracts, so would be very pleased to hear back if your fiancé tries either of these mushrooms, even (or perhaps especially) if the results are negative or inconclusive.
Misspent youth memories we all have them.