March 31, 2021 at 9:18 am #18209NinaParticipant
Has anyone experimented with hallucinogens for coping with ALS? Writer Michael Pollen has discussed it quite a bit and I recently saw this article about it. I am moderately interested but would love to hear about anyone else’s experience.
March 31, 2021 at 3:54 pm #18219AnonymousInactive
You might look into Lions Mane mushrooms (hericium erinaceus). It is also a natural ingredient and promotes Nerve Growth Factor (NGF). There have been many studies on this.
April 12, 2021 at 5:26 am #18417
Two excellent books are Entangled Life by Merlin Sheldrake and of course How to Change Your Mind by Michael Pollan.
The psilocybin in Lion’s Mane is found in many mushrooms. I have a bag of dried magic mushrooms to try at some point when I have someone experienced with me.
One of the key points is that setting is extremely important. So clinical trials in sterile settings with people in white coats is not conducive to a good, effective trip.
Several of my wife’s arty family have done numerous ayahuasca trips to good effect, but my medic sister is dismissive.
I’ll post again when I pluck up the courage.
April 12, 2021 at 7:31 am #18426AnonymousInactive
HE (hericium erinaceus) in lions mane mushrooms promotes NGF-nerve growth factor- production (a natural chemical) in your body
studies have shown the benefit for nootropics in humans (studies on upper motor neurons)
the effects of HE are maintained over 6 months after the subjects quit taking HE
this is indicative of permanent growth of the nerve growth and not a chemical byproduct
as pALS lose motor neurons in the muscles (lower motor neurons)
NGF stimulates growth from the surviving neurons in the surrounding muscle
if the muscles have innervation, they do not atrophy
so maximizing the NGF production is a very good idea for pALS
anything that slows muscle atrophy is good IMO
I was amazed at how many studies there are on HE, yet very limited investigation for ALS
<h1 class=”u-font-serif u-text-light alt-xl”>Nerve Growth Factor</h1>
Nerve growth factor (NGF) is the founding member of the neurotrophins, a family of secreted growth factors responsible for the growth, survival, and developmental plasticity of neuronal populations in the vertebrate peripheral and central nervous system [1, 2].
April 12, 2021 at 7:35 am #18429AnonymousInactive
I back away from any mind altering substance.
Clean and sober for 28 years as of 23 Feb 2021.
April 12, 2021 at 8:22 am #18434AmandaKeymaster
@John, CONGRATULATIONS on 28 years! That is an amazing accomplishment. Stay strong and thank you for sharing.
April 12, 2021 at 9:32 pm #18457AnonymousInactive
Thank you Amanda!
April 13, 2021 at 5:29 pm #18466Angelo VenosaParticipant
I’m in the exactly opposite direction, 66 years sober but full of curiosity about psychodelic drugs potential on neurodegenerative diseases. : )
April 18, 2021 at 12:23 pm #18539LindsayParticipant
I think there could be great potential for ayahuasca and psychedelics, including microdosing, for ALS. As the author mentions, psychedelic medicines have been shown in clinical trials and beyond to treat conditions that are lacking in traditional treatment possibilities and efficacy.
Currently there is a rise in popularity with microdosing with psilocybin or LSD, although ayahuasca can be microdosed as well. Microdosing is taking a subperceptual dose of a substance, so it is not “mind-altering” at least in the sense that if your dose is correct you may not notice any dramatic effect to your day. Generally, effects are noticed over time and a large body of anecdotal evidence reports how microdosing has alleviated a variety of physical and mental health conditions, including increasing creativity or bringing a flow to the day. There has been some clinical research around the positive effects of microdosing, however with current research models (lacking time), it’s difficult to distinguish from the placebo. Microdosing is a very accessible way for people to access psychedelic medicine, in that it can be incorporated into daily life, regularly. Regardless, there are contraindications with certain medications so check with your doctor. Also, though small, microdosing may encourage the surfacing of challenging emotional material, so it’s also good to have connection established with mental health providers or communities of support.
In my family, I consulted a psychiatrist to taper my father (12 years with ALS) off anti-anxiety medication with the help of microdoses.
Ayahuasca is a very different experience and it warrants a very different level of preparation and support. As the author describes, ayahuasca has been shown to be a physically and psychologically safe medicine, when held in supportive settings. Long-term ayahuasca users, members of ayahuasca religions of Brazil, have been shown to score higher on psychometric tests than control groups. Part of the experience is the visionary state induced, and part of the medicine is the purgative effect (this is not always vomiting, but can be tremoring, yawning, etc.). It is understood that the purging is clearing of physical, emotional, energetic blockages, which is ultimately very relieving. During an experience with ayahuasca, it is possible to access repressed memories, old trauma, buried emotions, gain new insights and awareness, etc. etc. in ways beyond western psychotherapeutic interventions. Which, again, is why it is very important to access experiences with this medicine through trained and experienced facilitators and also have support before and after. Preparation and integration are key to a beneficial psychedelic experience.
I can’t speak to the mechanisms of neurodegeneration or how the b-carboline alkaloids of ayahuasca might work on neurotoxins possibly associated with ALS. I honestly think that’s too microscopic of a perspective. I’ve spent a lot of time considering how these medicines might work in the treatment of ALS and I believe that they could be beneficial in the way they work on the emotional and cognitive aspects of the individual, in addition to their effects on the physical. One author that has influenced my current perspective immensely is Dr. Gabor Maté. In his book “When the Body Says No”, he discusses the connection between the mind and the body in creating disease. Psychoneuroimmunology. He includes a chapter on ALS. (After this book, Dr. Maté began in-depth work with ayahuasca, on his own and in clinical research for the treatment of addiction). Considering the connection of the body and mind (and spirit, if you’re willing to go there), I’ve wondered about the way pALS are emotionally supported through their experience with ALS, and in ways that examine their emotional lives before their diagnosis. (I have seen a large gap here).
In the way that psychedelics work with the whole person, I do believe there is great potential for their use in the treatment of ALS, including symptomatically. Certain psychedelics are more suitable to each person and their condition (and I think there are ways that they could be accessible for almost every stage of ALS), but again I am not a doctor, so check with yours. (But I do study psychedelics, so am open to answering questions) Also, do your research when accessing these medicines, and consider working with experienced facilitators.
April 19, 2021 at 1:18 pm #18546
Thanks for all the very informative posts.
As a 63 yr old who has never taken illicit drugs, I have now begun a journey into various ‘medications’ made available to me by friends & family. Psilocybin is on the list once I have a reliable & experienced person to support me.
April 21, 2021 at 6:57 am #18553AnonymousInactive
I started doing drugs at 12. By the time I was 16 I had done all of the common street variety of psychedelic’s out there. I attribute it to have boosted my imagination substantially, but in the end, it was just a stepping stone to the end result. Addiction to mood altering substances is a tricky business, and my family history leaves me to believe that I am genetically inclined toward addiction.
Folks can get a lot of relief from the stress and complex emotions that go along with being a pALS. I find it spiritually and am lucky enough to be able to recognize when I need to avert depression. I find nothing wrong with experimenting with different substances that others willingly engage in, but I myself reject whatever substances I need too. The risk of relapse at 28 years is a lot lower than it was at 5 years, however, the damage done to my mind and body would rapidly revert to the same condition that they were in had I never quit. I doubt that I could find the road back to sobriety a second time. I owe a lot to AA and NA.
April 21, 2021 at 11:51 am #18559
Thanks John. I guess I’m fortunate in not having an addictive personality.
I understand that LSD and psilocybin are not addictive. Whereas alcohol, tobacco, heroin, cocaine are. Am I right?
April 22, 2021 at 9:38 am #18564AnonymousInactive
A genetic predisposition to addiction is not dependent on what type of substance or behavior, but the compulsion to do whatever it is that the addict prefers at the time. Example of this is that tripping on LSD, mushrooms, mescaline or any other designer drug that causes hallucinogenlike reactions would suffice for someone addicted to hallucinogens’. Suppose the drug of choice (LSD) were not available, but mushrooms were…the addict would buy mushrooms. Alcohol, speed, crack, depressants, and opioids may be more physically addicting, but the mental addiction is just as powerful, if not more so. I remember not being able to function because my brain lacked a mood altering substance, only to switch up to cheaper and easier to get substances. I hated the feeling of being clean/sober because my brain had been subject to one mood altering drug or another for 3 decades with very few breaks.
Mental addictions can also be demonstrated in gambling, sex, or the internet/cell phone. Addictions like shop lifting exist along with exercise, workaholics, shopping, tattoo’s…and a long list from there you can imagine.
The genetic predisposition is a specific weakness and can lead someone from one to another to another behavior or substance over many years, if not forever, unless the person figures out that there is something wrong and learns to recognize the process. Once I figured out what was going on, I could recognize when that addict wanted to chase a new rabbit and that gave me that power over it to stop.
Honestly, psychedelics’ are addictive because they are mood altering. When you get that clarity, the thinking on infinite realities opens up because your imagination is stimulated so strongly, it is hard to put it down and walk away from the experience. Be careful. Can you stop with just 1 lays potato chip?
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