Known affectionately to many by his screen name Lo0p, Evan was a pioneer and champion for the new and promising off-label use of the FDA-approved prescription medication baclofen for the treatment of alcoholism.
Evan was a recovered alcoholic, a charismatic and determined advocate for baclofen treatment and a gentle and modest friend of many suffering from the disease of alcoholism. He is survived by his mother, his father, and his two sisters. He was predeceased by his beloved aunt.
In 2009 Evan was desperately searching for a cure for his alcoholism when he found Dr Olivier Ameisen’s book, The End of My Addiction. Ameisen, a French cardiologist who was himself an “incurable” alcoholic, had discovered that progressively higher doses of baclofen administered over a period of weeks totally suppressed his craving for alcohol. He called the result “indifference” to alcohol. Yet in 2009, baclofen for the treatment of alcoholism was still virtually unknown in the United States both within the medical community, in treatment for alcoholism and by the public at large. In fact, treatment of alcoholism with medication was (and still is) widely believed in the alcoholism recovery community to be fraught with danger.
Evan and others who discovered Ameisen’s theory soon banded together on an internet forum for alcoholics called “My Way Out” (https://www.mywayout.org/community/f20/) to explore the promise of baclofen. They began calling themselves baclofenistas. The way out, however, for these baclofenistas was anything but clear. Baclofen is a prescription medication approved generally only for muscle spasticity and there were virtually no doctors willing to prescribe it for alcohol addiction.
With the kind of courage that only those who have truly been enslaved can muster to break the chains, the early baclofenistas plunged in without formal medical advice or supervision. They were desperate for relief and felt they had no other choice. Using MWO (the My Way Out forums) as a group support system, they researched baclofen and found offshore pharmacies willing to deliver baclofen to the United States and other parts of the world without a prescription.
They soon discovered that Ameisen’s protocol, involving administration of increasingly higher daily doses of baclofen, often entails enduring significant side effects, ranging from annoying headaches and nausea, daytime somnolence and night time insomnia to discomforting physical pain and changes in libido, to potentially debilitating sensory alterations, memory loss and mental confusion, dysphoria and hypomania. They discovered that rapid changes in dosage (necessary for effective treatment) could worsen these side effects. They also discovered that the side effects can be enormously exaggerated when baclofen and alcohol are self-administered simultaneously, as is often the case for those trapped in alcohol addiction.
Eventually, the baclofenistas found a very few doctors willing to prescribe the medication and learned successful strategies for managing the inevitable, but largely transient and harmless side effects. They counseled each other through the ups and downs. Soon a few of them discovered the “switch”, the moment of Ameisen’s indifference – the moment of freedom from craving. Then more and more found their switch. They discovered that baclofen works.
By October 2009, Evan was all in. He furiously scoured all publications on baclofen available and posted his findings for others on MWO. He assembled the first “library” of information about baclofen there and regularly updated it: https://www.mywayout.org/community/f2...ead-38718.html. It is still perhaps the best practical compendium of information about baclofen and alcoholism anywhere.
Evan began to treat himself with baclofen in the fall of 2009 and meticulously graphed his declining alcohol consumption on baclofen. By early 2010 he reported that he had hit his switch and found indifference. Of course, he did it his way:
“I took 150 mgs the very first day. 250 mgs the second. I hung around there for a while and ran out quickly because the online pharm I used only shipped half my order. I didn't actually hit my switch till a month later when I got a new order.
But by the third day I had reduced my drinking from 10-17 or so units EVERY night to 2 1/2. Effectively a switch as it was the first time I'd fallen asleep stone cold sober in months. I just didn't want more.
When I finally hit my switch it was on the 3rd day of taking 300 mgs.”
WARNING: THIS PROTOCOL IS NOT TO BE USED AS IT CAN BE HIGHLY DANGEROUS!
Evan readily admitted that his “titration” schedule was not to be copied, because, as in all things, Evan was impatient.
After “switching”, Evan took up the shepherd’s crook that the medical profession had declined. He made it his life’s work to guide and protect others on their way to sobriety with baclofen. He befriended dozens of alcoholics working their way through a baclofen regimen and was unfailingly helpful and supportive. He offered help and advice to all in innumerable forum posts, emails, private messages, texts and phone calls around the world. Evan understood that quitting drinking was only the beginning of an alcoholic’s journey to health. He was passionate about nutrition, exercise and fitness as additional tools for all to find balance and peace in life.
In June 2010, Evan reflected on baclofen and his life after recovery and wrote in the My Way Out forum:
“I hadn't realized how many people here I'd affected, or maybe even inspired until RedThread12 went looking for me. Then I started reading a few people's comments about my graph, and story on other threads.
It really made me think about when I was lost, and it seemed like I was walking through the fires of hell. I screamed so loud, so many times that I know God heard me, but didn't answer. It might sound bizarre, but that is such a distant memory for me now that I barely remember it. The demon is*gone.*Just *poof*...gone.
It was a very strange new feeling. All at once like...heh, like the switch we're always talking about was flipped, the light turned on and there I was. It was both*amazing*and*normal*at the same time. Like being freed from prison on one hand but almost like I'd never been there on the other. Throw a little time in there and that's how it became a distant memory.
Anyway, when I was there I do remember that I clung to every bit of knowledge and experience I could read about the people who had made it already. Sure I'd done my research and knew as much as there was to know about the path before me, you know I did.* *But what really gave me hope was to be able to interact with and watch the journey of the people who were already free.
It's a little selfish of me, but if I'm being honest with myself I have to admit that it's a little difficult to read through everyone's stories here sometimes. It brings back very painful, very real memories. But I do read them, they do ground me and now that I think about it, it's probably a good thing that they force me to remember what I've been through and where I come from.
Life without the demon IS amazing. It is so indescribably incredible. Throughout all my suffering I had hopes and dreams about who I knew I really was. I had hopes and dreams about what I knew I could do for myself and what I could do for other people. I am that person now and I'm doing all of those things. Instead of being a distant unobtainable truth now it is simply how I live my life. I breathe it, it's just normal.
I started a diet and exercise protocol that I'd developed for myself through years of research but could never put into action because I couldn't go more than 1 day without drowning myself in alcohol. I started it on Dec 1st. If you look at my graph that's like a couple of days after my first AF day.
…
I now live and breathe this lifestyle like it's something I've always done and has just always been a part of me. It kind of always has been there under the surface, just out of reach.
It kind of feels funny for me to be in a position to give advice, but since I think that's where I'm at right now I'll say this:*
Think about all of those things that you know you want but feels like you could never have, and plan out how you're gonna make them happen. There's nothing more powerful than an idle (sober) mind.
I love you all and think about you as if I were right there with you even though it hurts sometimes.”
https://www.mywayout.org/community/f2...nds-42543.html
Despite the great success of baclofen for many, for numerous others the side effects were too overwhelming to continue. Those individuals often quit baclofen before reaching indifference and were once again lost in the depths of alcoholism.
Evan’s concern about the impact of these side effects coupled with his interest in nutrition and his passion for shepherding led him to question the composition of commercially produced baclofen. He wondered whether the inactive ingredients and fillers in baclofen tablets (the only form in which baclofen is commercially available) were causing or exacerbating the side effects so many experienced. He soon found the answers to his question when Bill P., a chemist and an alcoholic who Evan met on MWO, introduced him to baclofen in liquid form. Liquid baclofen, Evan discovered, works better (is more effective), has fewer side effects and can be delivered to an alcoholic at lower cost than tablet form baclofen. But liquid baclofen was not commercially available. Bill P. was manufacturing liquid baclofen himself, privately, to help alcoholics.
When Bill P. became ill and could no longer produce it, Evan took over and founded PhoenixResearchLabs to make liquid baclofen for alcoholics. He later wrote:
"I'm not a freakin' shill, or even a good salesman. PhoenixResearchLabs is for me and for you.
Here is how I came to acquire it from my legendary (notorious) predecessor:
I sound like a salesman, makes me cringe a lil' bit. Just trying to clear up misconceptions. I guess I am one now, it's just not what it feels like to me. Profit is only my secondary motivation. I've been through all these hoops. Notorious ol' Bill's liquid baclofen simply was the best and cheapest out there. Until he got sick.
When he was leaving the country for bigger and better things he called me because I was the only person that he could think of to carry on "his dream". To provide anyone who needed it with the highest quality, dirt cheap baclofen. Money was secondary. He did it because he worked in a cardiology office, and there was a man who was dying of alcoholism, wanted out, and he knew how to save his life.
He told my mom and I the story:
"I had a bottle of baclofen in my coat, I wanted to give it to him but I couldn't because it would put my license in jeopardy. I told my boss [the cardiologist whom he worked with intimately and knew every detail about Bill, his alcoholism and baclofen] and he reached out to the other MD's and asked "who here can prescribe baclofen to this man?" because he couldn't. That was the last time we saw him.
And he showed us the newspaper article, picture and all, of the man that inspired him to start making liquid baclofen."
[BillP eventually contacted Evan, explaining that he would no longer be making liquid baclofen, and that he wanted to pass the knowledge and tools for making it to him. At a time when family resources were limited, and Evan’s sobriety still maturing, he could not imagine that the possibility BillP saw could become reality. ]
"...then it became my dream. "
https://www.mywayout.org/community/f20/those-who-don-t-know-me-yet-70817.html
Then, when internet trolls and dissent threatened to diminish the effectiveness of the My Way Out forums, Evan became concerned that alcoholics would be unable to find critical information about baclofen and he resolved to start a new and better online forum dedicated to baclofen treatment. Evan donated hundreds of hours and thousands of dollars of his own money to build this new website to inform alcoholics about baclofen and support them on the road to recovery.
In July 2013, shortly after Evan started this website, the father of baclofen treatment, Dr Olivier Ameisen, died of heart failure. Evan wrote,
“I shed one single tear this morning. Before it fell from my face I felt both shame and hope. The singular thought running through my head was: "If history is any guide, then I know that now is your time."
https://www.mywayout.org/community/f2...e-2-78344.html
By all accounts, Evan took Ameisen’s death as a challenge to redouble his efforts to bring the story and promise of baclofen to alcoholics around the world. He buried himself in the task, often working through the night to get the word out and support those who asked for his help and advice.
Evan was always caring and believed in giving back. In August 2013, one of the few doctors in the United States who understood the importance of Ameisen’s discovery could no longer practice. The doctor had prescribed baclofen to save countless lives and families from the inevitable consequences of alcoholism. Evan orchestrated a letter-writing campaign to express appreciation for the efforts of the doctor. When letters failed to materialize in the quantity Evan thought was appropriate he rallied those who had benefitted with a plea across communities. Many more letters materialized, all acknowledging the important role the doctor had played in relieving their addictions.
Participation in the Baclofen for Alcoholics website has been steadily growing. Evan was planning a move across country in 2013 to work more closely with a dear friend to promote the safe and effective use of baclofen for alcoholism. His many friends insist that the work of this pioneering and charismatic baclofenista will go on until his goal of seeing baclofen accepted as a mainstream medical treatment for alcoholism in the United States is reached.
Baclofen is a derivative of gamma-amino butyric acid (GABA), first synthesized in 1962, and used safely and successfully for over 40 years around the world primarily to treat muscle spasticity. While the precise action of baclofen in treating alcoholism is not yet completely understood, it is believed that baclofen, a principal*neurotransmitter*(a chemical that transmits signals from a neuron*to a target*cell*across a*synapse) in the*human central nervous system, simply mediates alcohol intake and [has] alcohol motivational properties.*
Ameisen postulated that, in addiction, successful suppression of symptoms (such as craving, anxiety, preoccupation and recurring thoughts of drinking) should suppress the disease altogether since addiction is, he observed, a "symptom-driven disease". Treatment with baclofen, he wrote, rendered him “completely indifferent” to alcohol.
At the time, complete suppression of alcohol dependence using a medication had never been described in the medical literature. Ameisen wrote up his own case report which was published in the journal Alcohol and Alcoholism in December, 2004,*and followed it in 2008 with the publication of a book, The End of My Addiction, published by Sarah Crichton Books, an imprint of the distinguished publishers, Farrar, Straus and Giroux. At the time of its publication The End of My Addiction was lauded by many as a treatment breakthrough of major importance. “You have discovered the treatment for addiction,”*wrote Jean Dausset, M.D., winner of the 1980 Nobel Prize in Medicine. Jerome B. Posner, M.D., a professor at Memorial Sloan-Kettering Cancer Center in New York wrote, “This is a wonderful book . . . Ameisen may be responsible for making a signal discovery much like, but better than, that of George Cotzias [the first to show that L-dopa could alleviate Parkinson’s disease], in that so many more patients may be involved.”
A very large and warm thank you to the brilliant original writer of Evan's memorial, Cassander. Also to the remarkable assistance in expertise, input, and edits from MissionWise, Kronk, SpiritWolf, and RedThread.
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