Grupo CH Espana Posted December 10, 2010 Share Posted December 10, 2010 Folks, I´ve had it. As most of you are aware, Dr Matthias Karst from the MedFac of Hannover has conducted a succesful trial using BOL-148 (2-bromo-lsd) aka the non-hallucogenic variant of LSD on 5 patients last year. It is as simple as 0,03 mg/kg 3 times over 15 days and then once again after 6 months for a PERMANENT painfree solution to Cluster Headaches, either episodic or chronic. I have written the following open letter to the top 5 chemical research companies with pharmaceutical affiliations and several Spanish producers. personal data censored. L.S, My name is ***** and I am a resident of Jávea, Spain. I am part of a global group of both episodic and chronic Cluster Headache patients which consists of individuals of all walks of life, ranging from students to engineers to housewives etc. Cluster Headaches (CH) is a highly debilitating condition for which currently there is no official cure, and is commonly recognised as the most painful condition a human can experience. It absolutely destroys the patient´s life both professionally as well as family life. More background can be found here: http://en.wikipedia.org/wiki/Cluster_headache I am writing you today to draw your attention to a recent ground breaking clinical trial by Dr. Matthias Karst, M.D., Ph.D., Professor of Anesthesiology of the Hannover Medical School in Germany, where 5 patients where dosed with the non-hallucinogen variant of LSD called BOL-148 aka 2-bromo-LSD (2-BROMO LYSERGIC ACID DIETHYLAMIDE). The study produced astounding relief to the participants and holds hope for the 0.1% - 0.3% of world population who suffer from this rare condition. The Karst study (The non-hallucinogen 2-bromo-lysergic acid diethylamide as preventative treatment for cluster headache) can be found here: http://www.clusterheadaches.com/yabbfiles/Attachments/CH_-_BOL.pdf I am part of a large group of CH sufferers who have joined forces online and do not want to wait for many more years with this condition that has shattered our lives and has driven many to suicide. We feel that the number of CH sufferers is simply too small for any company to develop medication on a larger scale because there is no substantial market. Therefor I have decided to take action. This letter is a result, we are asking you, as a reputable chemical company, the steps required to obtain BOL-148 and to start the process of getting to the point where our group can benefit from the much needed Karst discovery. Dosage will be strictly under medical supervision on individual basis following Dr. Karst dosage of BOL-148 (0,03 mg/kg). Please specify your requirements for producing and providing medical grade BOL-148. Please specify which channels are needed. Our group can get: - Medical certifications - Cooperation from local pharmaceutical companies (as intermediate if needed) - Cooperation / References / Prescriptions from medical doctors (again if so desired) We will provide any waiver(s) needed to your company upon request. As you may understand, some CH sufferers with a chemical background have already chosen to choose a path of "illegal" BOL-148 production as well as the (illegal) use of LSD-25, LSD-50 and Psilocybin containing seeds, herbs and mushrooms with all risks involved, which, however promising, we must reject. The group which I am part of wishes to obtain the proven method in the form of the non-hallucinogenic chemical BOL-148 from a trusted source like your company - if at all possible 100% legal - and keep other options only as a last resort. Your advice and opinion will be very highly valued. Sincerely, ********* (email address) group websites: clusterbusters.com clusterheadaches.com chhelp.org (non-affiliated supporter) This is a bold letter, but desperate times require desperate measures. I have super charged the letter here and there, but it is needed to draw attention. I currently have a proposal for the production of BOL-148 by a Chinese company - one of many I have written to - but I am not comfortable with the COA report. (or lack thereof). I want the medical grade quality with >= 99% purity. One way or another this is going to happen, even if I have to setup a lab myself with some chem students. I am looking for a generic solution for all of us, and in doing so I no longer have fear nor respect for the governing bodies and am fully committed to this path I have chosen. Even if this means myself shipping out free doses of BOL-148 to everyone who needs/asks for it. I KNOW for a fact I am going to get my dosage, one way or another, if I can solve your pain too depends partially on you and your responses. I gather a doctor needs to become involved one time or another if you are a U.S. resident because of FDA restrictions etc. Well I can tell you here and now if I can lay my hands on 2000cc of BOL-148 I will ship them out to the U.S. as perfume if I have to. They will have to arrest me if they want to stop me, and you can rest assured this will attract media attention, I´ll make sure of that. All I ask for is your support in this endeavour. Chemists/Medical staff in here step up please. 1 Quote Link to comment Share on other sites More sharing options...
TakinitEZ Posted December 10, 2010 Share Posted December 10, 2010 I think this is a worthy approach and I applaud your efforts. Attaining the source compound is the first significant hurdle and as you've indicated may best be approached ex-US. The other hurdle is that the Karst discovery may be not be considered statistically significant from a clinical study perspective and would require more safety and efficacy evaluation before a new drug application could be filed. That said, I think you are very much on the right path, engaging drug makers in dialog about a new medical solution with high a high probability of success. Perhaps an aid to the cause may be some metrics regarding the potential market that will make it a worthwhile endeavor, ie. patient population, possible doses over their lifetime, etc. I completely support you in this endeavor and will be glad to help as feasible. -Chris Quote Link to comment Share on other sites More sharing options...
Bonkers Posted December 10, 2010 Share Posted December 10, 2010 Good idea; certainly worth a try. You'll get plenty of support here. What can anyone else can do to help? Quote Link to comment Share on other sites More sharing options...
CHfather Posted December 11, 2010 Share Posted December 11, 2010 I am with you in any way. I have often myself what I would pay to end my daughter's headaches safely, permanently, and 100% legally, and the answer is . . . a whole lot, whatever the effect might be on my retirement savings. At the same time, I'm not sure that sending this letter individually would matter much . . . aren't there connections in the CH world, even at this small sample of it, to people who might care if they really understood? Gosh, I'm thinking of some people I know who might be able to help. Can this campaign be organized in some way? (Am I jumping the gun? Isn't Entheogen trying to move this forward, with a profit motive? www.entheogencorp.com Are they the right ones to contact with offers to help???) At his blog, the Yale Medical School guy who has done a lot to try to gain attention to the busting tactics supported here, wrote this: >>>My question to my readers is–why aren’t you out picketing? Cluster headache is four times as common as muscular dystrophy, I kid you not. Cluster headache is as common as multiple sclerosis. Yet Jerry’s kids are out there raising $60 million a year for muscular dystrophy research. $100 million a year is poured into MS research. The comparable figure for cluster headache research is… well, close to zero. But if you don’t care about cluster headache research, why should we?<<< Of course, many here, including my daughter, have found relief, thank God. But there's so much more to do. I'm ready, willing, and kind of able. Jerry 2 Quote Link to comment Share on other sites More sharing options...
Bonkers Posted December 11, 2010 Share Posted December 11, 2010 Hi Jerry, Do you have the blog address for the Yale student you mention? Thanks, Ron Quote Link to comment Share on other sites More sharing options...
CHfather Posted December 11, 2010 Share Posted December 11, 2010 Ron, it's Dr. Sewell's blog. I don't think he's posted much there in a while. www.clusterattack.com Jerry Quote Link to comment Share on other sites More sharing options...
TakinitEZ Posted December 11, 2010 Share Posted December 11, 2010 Bitter or not, I think the blog entry raises a good point. We do not have a significant public voice. I would say there is a maturity curve for publicly addressing an unmet need, and that we're low on that maturity curve. We could learn a lot from other causes that have progressed farther up the curve, like MS. -Chris Quote Link to comment Share on other sites More sharing options...
alleyoop Posted December 11, 2010 Share Posted December 11, 2010 I agree completely Chris, and removed the post. Quote Link to comment Share on other sites More sharing options...
Poli Posted December 13, 2010 Share Posted December 13, 2010 Hola, I'm shocked, don't know what to say. Are you doing this on your own?, did you contact our fearless leader?, what is this Grupo CH Espana?. Sorry, I've mixed sensations, I like the idea but not sure this is the way. People and Doctors involved in this deserve some kind of respect. I'm in Alicante, if it helps. Saludos Poli Quote Link to comment Share on other sites More sharing options...
ClusterBon Posted October 28, 2018 Share Posted October 28, 2018 It’s now October of 2018, I’m wondering if anything has been accomplished in regards to obtaining BOL-148 since the original post in 2010?? Quote Link to comment Share on other sites More sharing options...
Dallas Denny Posted October 28, 2018 Share Posted October 28, 2018 I recognize that face!! Lol! Just saw your post in the Facebook group Bonnie! To answer your question, BOL-148 is pretty much dead in the water the last I heard.....sorry. I know that's not the answer you were hoping for. Dallas Denny 1 Quote Link to comment Share on other sites More sharing options...
ClusterBon Posted October 29, 2018 Share Posted October 29, 2018 Hi Dennis, Ugh, definitely not the answer I was looking for, but thanks for letting me know. I wonder why it was dropped, so to speak? Quote Link to comment Share on other sites More sharing options...
Dallas Denny Posted October 29, 2018 Share Posted October 29, 2018 Bonnie I think the gist of it was that doc Halpern and his company, entheogen, wasn't able to secure adequate financing. DD Quote Link to comment Share on other sites More sharing options...
ClusterBon Posted October 29, 2018 Share Posted October 29, 2018 Ahhhh ok I see, well isn’t that just too bad! CB Quote Link to comment Share on other sites More sharing options...
Tony Only Posted October 29, 2018 Share Posted October 29, 2018 It was announced on Clusterbusters facebook page that BOL-148 is back on track. I would have posted the update here or even the link but this forum does not let me do it. So go to Facebook, search "Clusterbusters" and scroll down to Denver posts, it's there. Quote Link to comment Share on other sites More sharing options...
Tony Only Posted October 29, 2018 Share Posted October 29, 2018 I copied/pasted the text in the Facebook post, inserted that and the link to Facebook post here in the "Submit Reply" box. This forum automatically changed the link to somekind of Facebook preview and when I tried to reply I got this. Quote Link to comment Share on other sites More sharing options...
ThatHurtsMyHead Posted October 29, 2018 Share Posted October 29, 2018 Tony, I'll try and see what happens. I might need to joggle some settings if it's a settings issue. Looks like I get the same message. looks like facebook is blocked by the message board security software. Trying removing content and just using the link: https://www.facebook.com/clusterbusters/posts/1738710686237791 Ok, the message board security software is blocking embedded content. Once you add a link look at the bottom of the content box and there's an option to just post as a link. Should be good. J 1 Quote Link to comment Share on other sites More sharing options...
numbnose Posted October 29, 2018 Share Posted October 29, 2018 2 hours ago, Tony Only said: It was announced on Clusterbusters facebook page that BOL-148 is back on track. This is great news!! Were there any details given at the conference? What can we do to help? cheers Quote Link to comment Share on other sites More sharing options...
Jimmy Martinez Posted October 29, 2018 Share Posted October 29, 2018 Thank you for spearheading this! what can we do to help you get this off the ground? Quote Link to comment Share on other sites More sharing options...
CHfather Posted October 30, 2018 Share Posted October 30, 2018 Love to know what "back on track" means. I'm sure the official ClusterBusters FB site wouldn't mislead us, but there's no real info there, either. We heard this over and over from Dr. Halpern at previous conferences. I remember getting real excited and being told by more senior people that they'd heard it before. Entheogen couldn't raise the millions required for clinical trials. I gave them money and convinced friends to give them money. So I'm feeling burned by it all, but willing to become hopeful again. 1 Quote Link to comment Share on other sites More sharing options...
CHChris Posted October 30, 2018 Share Posted October 30, 2018 I was at the Clusterbusters conference and heard the presentation about BOL-148. I reviewed my handwritten notes, so I don't have all the details. Essentially, a man named Carey Turnbull, a retired energy broker and psychedelic medicine advocate is funding the continued research of BOL-148. Again, I apologize for not having a lot of details on this, but apparently this man is spending a lot of his own money (millions) to continue the research. I am not on the FB group, so I don't know what was posted there. I had never heard of BOL-148 before this presentation. It sounds very promising though, and it seems this gentleman is determined to get this stuff into research trials. I'm sorry I can't be truly helpful, I was drinking from a firehose at that conference, and didn't absorb everything. But I heard the presentation, and I know a lot of people were very excited about the future of the BOL-148 research, including some people who have been around for a while. 3 Quote Link to comment Share on other sites More sharing options...
CHfather Posted October 31, 2018 Share Posted October 31, 2018 (edited) Thank you. I'm looking forward to hearing more. I looked up Mr. Turnbull on google in every way I could think of to learn about his BOL-related activities, but didn't find anything. So I'll have to wait for more news about him from the conference. Edited October 31, 2018 by CHfather 1 Quote Link to comment Share on other sites More sharing options...
Dallas Denny Posted October 31, 2018 Share Posted October 31, 2018 Hey Chf! From what I learned from Eileen (conference chairwoman) today details will be released soon but the trials are going to be hosted by Yale so I'm feeling very positive!!! In my opinion, Bol148 is the best shot clusterheads have at getting an FDA approved treatment any time soon!!! DD 1 Quote Link to comment Share on other sites More sharing options...
CHfather Posted October 31, 2018 Share Posted October 31, 2018 Thanks, Denny. i suppose yale has recognized that it has to do something to make up for having me as one of its graduates. 1 3 Quote Link to comment Share on other sites More sharing options...
JF_RegenicaBio Posted August 27, 2019 Share Posted August 27, 2019 Apologies for bumping an old thread, but want you all to know that CH has become personal to me. I am the CEO and founder of a biopharmaceutical company in San Diego, and, although the company is primarily engaged in developing antidotes for the U.S. Military+Emergency Preparedness, I am a strong advocate for underserved patient populations (where traditional pharma is unable or unwilling to help). We may have access to resources and partners that can push this compound to a place where you all can access it safely, affordably, and reliably. I'd love to continue the dialogue and see where I/we can be of assistance and get this drug in the hands of patients as quickly and efficiently as possible. Please email jfernandes@regenicabio.com if you're interested in discussing further. Strength and Optimism, -Jack 2 2 Quote Link to comment Share on other sites More sharing options...
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