Latest results

Interviews with pilot study participants

ALS patients and their initial evaluation of treatment using Ayahuasca medicinal plants

Q: Question

A: Answer

Male, 65, UK, diagnosed with ALS

Q: What can you tell us in general about your medical condition, and to what degree has it affected you? (At the point prior to treatment using ayahuasca)

A: My prognosis as of March 2013 was that of a one-year life expectancy, I did get a specific MND diagnosis confirmed by a consultant neurologist, on the back of which an insurance company paid up on my critical illness cover, there being a clear understanding that I would probably not last the year. I was very weak and trembly, had lost over 20 pounds in muscle mass, my knees were prone to swelling and I was racked by cramps and muscle twitching. I could barely manage stairs, and couldn’t get out of the bath unassisted. I remember being a little challenged by a four inch step across the end of the room, choosing my best leg to step down.  

Q: Describe a typical experience with ayahuasca. What is it like during the immediate time the medicine is active in the body? What has been experienced afterwards?

A: As for side effects, initially a fair amount of retching, but I didn’t actually vomit much. Then some spastic activity, after which a warmth spread throughout my chest cavity, and sensations from the connection between muscle tissue and skeletal bone. It left me exhausted, but it “mellowed out” after a while into a contemplation state of mind where the concept of fear had a major part. Stressful emotions such as fear and anxiety seems to be a major vexation (in relation to neurological diseases), and the ayahuasca seemed to soothe that too. I didn’t feel that much different immediately afterwards, I suppose I felt a little more relaxed, but the following weeks (after sessions) my massage therapist said the muscle twitching was much improved, and I continued to recover steadily.

Q: Has this treatment relieved or improved your condition in any way so far?

A: I have made essentially a full recovery, slow but persistent, and the NHS consultants involved are mystified. Ayahuasca seems to me to have been instrumental in my recovery, which is fully documented. I am now fully healthy, I cycle to work. Now, after today doing a nine mile coastal walk for the pleasure it, I feel pretty much up to snuff, for a man of my age. A year after my diagnosis I held a party to express my gratitude to all the people who had helped me through, including T.H the consultant neurologist (he didn’t actually come). I was by that time much better, not up to full strength, but could party on and play the saxophone. I told my doctors about ayahuasca in August of 2013 I think, it was for a six monthly reassessment of my condition. T.H was frankly astonished, and when challenged said that the diagnosis was absolutely sound adding that the nerve conductivity tests were particularly unequivocal. It was then that I told him about the ayahuasca, and rather sheepishly, and mistakenly, he asked me if I had had a “good trip?” I replied that it had been unpleasant and that it was not a therapy for the faint hearted. Since then T.H has presented my case to some regional peer group, and a professor K.T. Their response was that perhaps I had a “mimic”, which seems to be exactly the same as the disease except for the outcome; or that the condition might have been brought upon me by the “cocktail of therapies I was taking” at the time. I have yet to make a measured response to this, but it was not until I had serious symptoms that were initially interpreted as Lyme’s disease or an atypical sero-negative rheumatoid arthritic condition, that I embarked on any kind of medical therapy at all. The history presents a persuasive argument. My family, friends and some of my patients are aware of my ayahuasca treatment and are generally supportive. My wife plays tennis with a number of retired GPs – their general opinion is that whatever I did can’t be too bad. Hell I’m still walking about and they were initially supporting my wife and family on the clear expectation of my imminent demise.

Q: Will you continue this treatment? If so, will you make any changes to your current regimen?

A: I don’t see any necessity to carry on being treated. I might do the ayahuasca again but that would really be just out of curiosity.

Q: Have you been following any particular diet prior to, or during your treatment?

A: Lots of organic fruit and vegetables, and I have a small holding so we have organic lamb and chicken too. I haven’t eaten dairy for the past two years, and I seldom drink alcohol though I had a glass of cider the other day.

Q: What made you try this alternative treatment?

A: It was an inspired patient who in doing an art degree in Plymouth came across the (ayahuasca) visionary art, and drew my attention to its source. Curiously some members of the church group with whom I sit proved an unexpected source of interest and leant me various books on the topic including those of the late Alexander T. Shulgin (american biochemist and pharmacologist).

Q: Would you like to add something, anything, that could be of interest to ALS patients, caregivers, researchers and readers of this website?

A: My underlying concern is that the pharmaceutical industry is solely concerned with the manufacture of specific molecules with a view to the making of money. I cannot see much hope of actual trials, because (a) the substances involved in Ayahuasca are well documented and not available for patenting (b) the number of actual cases is too small to warrant research (c ) the amount of money that could be made by investing in this area makes the whole issue unattractive to pharmaceutical companies. The basic difficulty is that the research into medicines is finance not need led, and the lumbering double blind trials are astonishingly expensive and I cannot imagine how it would be possible to set up a placebo/control group dose that could have similar effects but not alter your state of health. That being said, everything must have a beginning.

Q: Thank you for your time and for sharing.

2016 – Ayahuasca ALS Treatment

Female, 82, USA, diagnosed with ALS

Q: What can you tell us in general about the patient’s medical condition prior to ayahuasca treatment?

A: Mom wasn’t able to walk, talk, or eat using cutlery. She had to be fed through a syringe.

Q: How long did treatment continue?

A: 8 months between november 2015 until June 2016

Q: Did this treatment relieve or improve condition in any way?

A: It did improve her facial structure and expression, meaning that when opening her mouth to eat, which she had trouble doing, her jaws were allowed to stretch better. With this treatment, it corrected her mouth structure and jaw muscles. She became able to move one of her legs which was contracted before I increased the medication. It helped her to expand her right leg movement and to regain control over her feet, keeping them together. Treatment seemed to improve her memory, making her recognize and remember characters when she was watching TV. Her speech was impaired from ALS but she was able to use sign language to communicate with me.

Q: Did the patient follow any particular diet or medicinal protocol prior to, or during treatment?

A: Liquid food due to feeding problems, and Prevagen supplement. She recieved low doses of ayahuasca 10x extract, using between 6-10ml daily administrated orally by syringe.

(Note: Suggested dosage concentration and frequency varies greatly depending individual patient circumstances, please contact ayahuascatreatment@hotmail.com for
comprehensive information).

Q: What made you try this alternative treatment?

A: Reading online article and contact with the Ayahuasca ALS Treatment website.

Q: Would you like to add something, anything, that could be of interest to ALS patients, caregivers, researchers and readers of the website?

A: My advice to anyone, is to start the treatment at the earliest possible stage of ALS. Don’t wait any longer. Usee a small amount first to test reaction from it. If you want to increase it, be careful, this treatment is very strong and with a very “spicy” taste. You might need to add extra water to make it thinner and make it easier to swallow.

Q: Thank you for your time and for sharing.

2016 – Ayahuasca ALS Treatment

Male, 59, Sweden, diagnosed with ALS

Q: What can you tell us in general about your medical condition prior to ayahuasca treatment?

A: Balance problems, growing weakness in legs, then in fingers and face musculature. Twitches, speech difficulties, trouble swallowing. Could only walk using a rolleraid for short distances.

Q: How long did treatment continue?

A: June 2016 – October 2016. Disease has since progressed, but stalled temporarily during period of treatment.

Q: Did this treatment relieve or improve condition in any way?

A: Clear improvement of general condition. More strength and able to walk small distances again without rolleraid. Substantially improved speech. Aching pain gone from feet and knees. Trend continues over course of treatment with a clear sense of having more energy and better endurance for days following consumption. Feel very certain there is medicinal effect from the ayahuasca, and an impression something is going on in the body.

Q: Did you experience side effects? What were they like?

A: Light nausea, but without purging. Slight shivers. Sensitivity to light, taste and sound, although no psychoactivity. Fatigue on medicine days.

Q: Did you follow any particular diet or medicinal protocol prior to, or during treatment?

A: Non-dairy diet with little red meat. Fish or eggs sometimes. Birch sap, Berry Smoothies or fresh fruit, leafy greens, some nuts and ginger. No gluten or alcohol.

Q: What made you try this alternative treatment?

A: I am a biological researcher of chemical ecology, with great private interest in natural medicine and native people culture.

Q: Would you like to add something, anything, that could be of interest to ALS patients, caregivers, researchers and readers of the website?

A: I am convinced that we need to preserve the knowledge and philosohpy native people have gathered during thousands of years for the benefit of mankind.

Q: Thank you for your time and for sharing.

2017 – Ayahuasca ALS Treatment

Male, 25, Australia, diagnosed with ALS

Q: What can you tell us in general about your medical condition prior to ayahuasca treatment?

A: Prior to undertaking a microdosing regimen of ayahuasca (20-40mL a day), I was at a point where I used a walker to get around, had a very slight impediment with breathing and had lost force pretty much everywhere in my body. Other than this, I was and still am in bizarrely good shape and good health by all other measurements.

Q: For how long have treatment continued?

A: I engaged in a microdosing regimen in Feb 2017 – June 2017. I may resume again in some form soon.

Q: Did this treatment relieve or improve condition in any way?

A: There were moments when I had a sense of improvement – better coordination and fluidity of movement. Most notably, during this period of time, my mental attitude toward my predicament altered for the better, to which I give ayahuasca credit for aiding this process. To put it simply, I found myself stepping more so into a state of acceptance toward myself as a person and dropping some of the inner struggle that I dealt with though it was not ayahuasca alone that did this, and I do not claim any grand illumination, but it did help even if by inviting a state of introspection. This in turn has led not only in an improvement in life experience generally, but seemingly a slowing of (ALS) progression. There have been long periods where seemingly no degeneration was occurring. Though ultimately there has been some generalised progression during this time. I feel there has been benefits, but nothing substantial enough to make definite claims yet.

Q: Did you experience side effects? What were they like?

A: Occasionally a slight nausea, never dramatic. A generalised buzz or subtle sensation, particuarly through my head. I found myself engage in a rather introspective state, permitting myself to explore various psycho-emotional aspects of myself.

Q: Did you follow any particular diet or medicinal protocol prior to, or during treatment?

A: I had an array of orthomolecular medicines i made use of; Vit C, Grape seed extract, Glutathione, B Vitamins, St Marys Thistle, CoQ10, Worm wood among others, though i became less regimented with these over time and there seemed no consequence. I followed an organic diet, no gluten, sugar, alcohol. Plenty of protein, eggs, meats. I have tried in the past vegan, paleo and others.

Q: What was your motivation for trying this particular treatment among others available?

A: Ayahuasca was a kind of bucket list thing prior to any diagnosis. To learn it may be therapeutically useful was icing on the cake.
I have also had some incredible effects from (psilocybin) ‘magic mushrooms’: drastically reducing fasciculations and spasticity for a few days after a single dose. Seeing as mushrooms are very similar to ayahuasca, I saw it very reasonable to pursue ayahuasca, though ultimately, ayahuasca did not achieve the same things. I now am in the process of pursuing psilocybin mushrooms.

Q: Would you like to add something, anything, that could be of interest to ALS patients, caregivers, researchers and readers of the website?

A: What I find to be the most unmentioned aspect of chronic disease generally, or at least unendorsed conventionally, is the potential psycho-emotional factor. Reading Dr. Gabor Mate’s book ‘When The Body Says No’, I found to be particuarly poignant and clinically intriguing, in which he explores ALS specifically. My experience with ayahuasca, in reading testimony of other terminal survivors and with my personal experience of ALS over the last two and a half years has pointed me again and again in this direction: that ALS may be best looked at through a bio-psycho-social model and not merely as a disease of the neurons, that there may be a kind of psycho-emotional trauma involved. On this topic, ayahuasca and psilocybin assisted therapy have demonstrated some astounding results in dealing with depression, anxiety and PTSD. It is perhaps in this modality of ‘opening up the mind’ that they may offer hope for suffers of chronic illness, not just as a matter of pharmacological intervention.

Q: Thank you for your time and for sharing.

2018 – Ayahuasca ALS Treatment