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Interviews with pilot study participants

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

Q: Question

A: Answer

ResultsChart

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

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17 Comments

  1. […] the latest results page with interviews and other published […]

    Like

    • Bryan Miller says:

      Hi,
      My wife Trish was diagnosed 11 months ago. Her arms and hands are very weak and she has a lot of spasticity. She would love to participate if possible.

      Like

    • madsenyk says:

      I have epilepsy originating in the left temporal lobe and am wonder if this could a treatment

      Like

      • hellspawndg says:

        People suffering from epilepsy are usually recommended to refrain from using ayahuasca or to use with extreme caution only under supervision from health professionals.

        Like

      • greg says:

        I would advise looking into neurofeedback as this has been shown to have very good results with epilepsy.

        Like

  2. Prexy Diego says:

    AMy sister-in-law is currently battling ALS now, she was diagnosed with the disease 6 months ago…she has undergone
    tracheostomy and now on PEG…Where can we buy this plant. She drools a lot, they always use the suction…Please we need your help, we want her to live long

    Like

  3. Diana Short says:

    My husband (Dan) has PSP. has any information come about treatment with this plant for this Parkinsonism? He is losing ability to talk and swallow. Can’t walk unassisted because of lack of balance and experiences muscles weakness. Also drools a lot.

    Like

    • hellspawndg says:

      I am sorry to hear of your husband’s diagnosis. None of the current participants have Parkinson’s disease or Progressive supranuclear palsy. There is one study on harmala alkaloids from ayahuasca and Parkinson’s disease – you can find the link in the reference section on the main article page. Supposedly Parkinson’s patients who have been to various ayahuasca retreats are said to have experienced some level of improvement, though I cannot personally confirm this. You could try finding further information in books on ayahuasca, since they often provide case descriptions and interviews with patients, including those with neurological health problems. There are at least some 50+ books published on the topic of this medicine, most of which are available on Amazon.com and elsewhere. A filmmaker named Michael Wiese, himself afflicted by Parkinson’s disease, made a documentary on ayahuasca a while ago, motivated by his personal quest for a cure. I have not watched it, but possibly it could contain some information useful to you.

      Like

  4. DavidN says:

    I would love to investigate this further. I’m 45, UK based and have MND / ALS. Diagnosed Feb 2014. I have many question. Mainly for the UK gentleman featured in this article.
    Did he travel to obtain the treatment, or did he get it shipped to him? Whichever, who did he arrange this via?
    Hopefully someone will know.

    Like

  5. Peter Duffy says:

    Hello,

    I have recently done a good bit research on the potential benefits of ayahuasca for the treatment of Motor Neuron Disease. Discovering this site was very reassuring.

    A family friend of our has been recently diagnosed with MNS (3 days ago). He is in his early 50’s and quite active, living in Ireland, and he has asked me to do some research on his behalf for natural remedies.

    He would love some more information and perhaps the opportunity to speak with someone with the hope of been able to sign up for this study!

    I really look forward to hearing back from you!

    Like

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