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Azernak0
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PostPosted: Fri Feb 10, 2012 4:37 pm    Post subject: Arbaclofen and my experience Reply with quote

Hello everyone. My name is Lord Azernak0, but you can just call me Azernak0 if you mention it only in the highest possible regard. I am medically diagnosed with High Function Autistic Spectrum Disorder. I was diagnosed when I was 18 after 15 years of my mother's private speculation and was about as much shock as learning that "water is wet." I was offered to try various pills and treatments for social anxiety and general anxiety as a whole. It has crippled me but I never wanted to take a pill that would leave me dopey. I have seen the quick wit and mind from my father be retarded and dulled by pharmaceuticals. While I never agreed with him for not being on medication, I certainly didn't want to become what he was; the person that just stares at the house on fire and just says "whatever."

That changed on February 13, 2011 when I had the worst anxiety attack in my entire life. I was hyperventilating so much and my heart rate was so high that I literally lost consciousness several times. That was one of the worst days of my life; the culmination of every inadequacy I suffer coming together in one fell swoop that left be beaten, broken for several weeks and probably changed who I am today. Let's just say that for two straight weeks, for the only time in my life, I contemplated death as favorable to having to deal with that anxiety ever again. Now for a quick PSA: if you have even thought about death in the same way that I did, speak to someone immediately. It doesn't have to be a family member, a priest, a friend, or even a qualified profession (but it should be). Just do me a favor as one human being to another; give it two weeks. Please.

Now that is out of the way, I will get back with what I was saying. After that, I decided to do some research and found that there was a new drug being tested in my area and that it was apparently having success. It didn't have anything that would leave me doped up, so I decided to call up and get enrolled in a trial for an experimental drug to "treat Autistic Spectrum Disorders." The drug's name was Arbaclofen.

<Note: the trial was double blind so for the first part I am not certain if I was on the drug, but I am 90% positive.>

The first week was nothing noticeable. The next week I felt tired and kind of zonked out in front of the television, sort of staring into space. This scared me so much. The reason I had lived with my anxiety was because I didn't want to be a zombie. "It is better to feel pain and agony than nothing at all." Thankfully, as I began to titrate the dosage up slowly with doctor's orders, the feeling of a zombie disappeared. Fast forward a couple of weeks and I am walking through Walmart grabbing a few items. It was about the time that I was standing in the checkout aisle, a little tired because of the day, that I realized what exactly I was doing. I was sitting in the busiest store, surrounded by people, noises, and smells and I wasn't having heart palpitations or feelings of complete dread. Even once I recognized this oddity, I didn't feel like a steamroller was driving over my body. I wasn't real happy about being in the store, I still knew I hated doing it, but I didn't feel terrible. It was overwhelming to the point that I had to contain my laughter because the other patrons were starting to stare at me.

That was a couple of months ago. After the initial study ended, I went on to the open label, meaning I was flat out told that THIS was 100% going to be the real stuff. That meant a week of no pills, and two weeks at the lowest possible dose. I was on 1/9 the daily dosage of what I was. It was difficult. The anxiety returned, along with it's friend "feeling like an axe was going to fall upon you." Saying it was difficult is simply too partial. It was one of the hardest things I have ever done. My mind started to slow down like when I had first taken the pills (a side effect of when the dosage is ever changed drastically) again and I just felt terrible. It was worse than before because of my subjective being and not because of any mathematical reasoning. "I knew what it was like to taste sweet, and now I am back to tasting bitter. Having taken a bitter pill without ever tasting sweet is favorable to knowing sweet for but a fleeting moment." Thankfully, my dosage is slowly creeping up again to what it was. I take comfort in the fact that the open label of the pills will be available to me until the pills get complete FDA approval and can be prescribed.

I have read a lot of bile and disgust over pills on this forum, and I agree with a lot of it. "Azernak0 'drunk' and Azernak0 'happy' are not the same person." "Baclofen and Arbaclofen are drugs that have been used on alcoholics; it needs more testing before it is done on children." Let me dispel some of those concerns:

1. Arbaclofen didn't turn me into a zombie once my body adjusted to it.
2. It didn't stop the "One in a blue moon massive panic attack" that just happens but it did stop the baseline level. When I thought of something that used to give me anxiety, I was able to acknowledge that I still didn't feel completely comfortable with it but it didn't make me feel ill anymore.
3. The last thing needs to be recognized again. I was in a complete enough of a mental state to notice that something that once gave me physical sickness type anxiety didn't bother me too much anymore. It was not a "whatever, house is on fire" thing. It was a "it still sucks, but I don't want to barf anymore."
4. My social phobia and extreme fear has subsided.
5. The pills are being tested across the country with nothing out of the ordinary happening like "head suddenly imploded."
6. According to my best friend, I am a better friend now than I was before.

The sixth reason is enough for me.
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Samara1991
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PostPosted: Fri Feb 10, 2012 4:43 pm    Post subject: Reply with quote

I am currently on baclofen for muscle issues. I didn't really notice a change in my social anxiety...
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Azernak0
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PostPosted: Fri Feb 10, 2012 4:46 pm    Post subject: Reply with quote

Baclofen and Arbaclofen are different. Baclofen is on the market now while Arbaclofen is still in the experimental stage.
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OliveOilMom
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PostPosted: Fri Feb 10, 2012 4:52 pm    Post subject: Reply with quote

I used to take Xanax for my panic disorder. The doctor had me take .5mg twice a day at the beginning because of how often and severe the attacks were. For the first few days to a week I was zoned, but after the first week, my body had adjusted and I didn't feel anything from them anymore. I was on those for a couple of years, daily. I never got dopey or zombied at all.
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PostPosted: Sat Feb 11, 2012 6:12 pm    Post subject: Reply with quote

Azernak0 wrote:
Baclofen and Arbaclofen are different. Baclofen is on the market now while Arbaclofen is still in the experimental stage.

AFAICT arbaclofen is simply a pro-drug for baclofen. A "pro-drug" being a substance (arbaclofen), that when ingested, is converted by the body into another drug (baclofen) which has the intended effect. The advantage with arbaclofen seem to be better and more steady absorption from the intestine that plain-old baclofen.

And baclofen binds to binding at GABA-B receptors and stimulates them. Half-similar to benzodiazepines in terms of effects. It's not really a new or novel drug in terms of how it works.

All baclofen ever did for me was induce depression, but I'm insanely sensitive to the depressing effects of drugs (if depression is a "very rare" reaction to the med I'll end up having it). Besides that it was calming, in a way that was similar to Xanax and klonopin.
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dr01dguy
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PostPosted: Sat Feb 11, 2012 8:52 pm    Post subject: Reply with quote

Did it do anything for executive functioning (procrastination, focusing on what's important, vs merely "interesting", etc)? Or is it just for anxiety?
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Ottery
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PostPosted: Wed Dec 26, 2012 5:57 pm    Post subject: Reply with quote

As I undersand it, arbaclofen is the right side of the baclofen molecule, hence r-baclofen. I am not a scientist. Seaside began the test of arbaclofen after baclofen was noted to reduce symptoms of autism in a child and the doctor involved mentioned this to a colleague and this then led to the tests. Now, Roche are involved in the trials and this is likely to be big news in medicine over the next years. I would suggest that shares in Roche are likely to be a good buy next year.

I say this because the problem with baclofen is two-fold and has led to a lot of criticism and skepticism about it and people involved with it. First, it is an old drug developed in the 1920s and out of patent so no one is interested in investing in marketing or research into it. Secondly, it has side effects which take some time to adjust to and cause some people not to want to take it. The offshoot of this is that those taking it, advocating it and selling it are open to comment as being, for instance, graduates of the University of Wikipedia.

That sort of thing is well wide of the mark, thankfully. Baclofen was approved in France for use on a case by case basis this year for treatment of alcoholism and is being trialed there so it will be used as a licensed treatment for alcoholism. One of the main proponents of baclofen for alcoholism and anxiey is Dr. Jonathan Chick who is the editor of the Oxford Journal of Alcohol and Alcoholism. He and Dr. David Nutt recently released a paper advocating the use of baclofen as a treatment for alcoholism and the medication is being used now in Scotland to help liver patients control their drinking. The research being conducted in Scotland is supported by the NHS and the University of Glasgow.

At Boston Univerity, Dr. Susan Mosher Ruiz has published a study into alcoholism as being caused by a disorder of brain "white matter", the interconnecting nerves in the brain. This area of the brain has been largely overlooked by mainstream neurology in looking at the underlying cause of alcoholism. Olivier Ameisen in his book, The End of My Addiction, in which he recounts his use of baclofen in recovering from alcohol describes alcoholism as a neuo-transmission dysphoria emanating from the limbic region of the brain. He describes addiction as an anxiety related disorder and his treatment with baclofen helped with many other behavioural problems such as OCD. The limbic region governs automatic responses, anxiety and fear responses and motor skills.

In my opinion, and I am neither a doctor or a scientist, the involvement of white matter and neurotransmissin in alcoholism is very interesting.

I have a question. Is autism related to the same "anxiety" which has its origin in a white matter disorder?

My hope is that over the next few years this whole area becomes much better understood. I don't like labels. I don't "believe" in the existence of a "psyche" and even if this meta-physical "thing" does float around somewhere I don't know how one can treat it medically or by talking at it. The answer to this IMHO is in neurology and I suspect the anxiolytic effects of arbaclofen, and baclofen will come to be seen as a major step forward in treatment for a wide range of "diseases" of the "mind" which are actually neurological deficits.


Last edited by Ottery on Thu Dec 27, 2012 1:15 pm; edited 2 times in total
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Rascal77s
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PostPosted: Wed Dec 26, 2012 9:53 pm    Post subject: Reply with quote

Had to read the title twice. First time I thought it said albacorfen and I'm thinking "they make drugs out of tuna?"
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Ottery
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PostPosted: Thu Dec 27, 2012 6:26 am    Post subject: Reply with quote

Rascal77s wrote:
Had to read the title twice. First time I thought it said albacorfen and I'm thinking "they make drugs out of tuna?"


Laughing
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coyote71
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PostPosted: Wed Jan 02, 2013 7:24 am    Post subject: Arbaclofen Reply with quote

My son was diagnosed as autistic traits and disorders contact. He is now 12 years old. There is a total lack of speech. Large hyperactivity. Auditory sensitivity and sensitivity to light. I heard about the drug to be generally available. Arbaclofen. Please for more information. Is the drug available in the U.S., and also in Europe?
Best regards.
Tomasz Sadowski POLAND
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C0MPAQ
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PostPosted: Wed Jan 02, 2013 9:18 am    Post subject: Reply with quote

I am an GHB addict (clean since 5 years or so) and got into addiction before it became more popular. At the time, GHB seemed as harmless and promising as Baclofen (despite being around since the 1950 or so). GHB was at the time and still is also a medication against narcolepsy and what not. GHB was believed to cause no significant withdrawal or no withdrawal at all. But after it became more popular around 2005 or so, GHB turned out to be a highly addictive drug, with life-threatening withdrawal (if consumed in excessive amounts).

When zopiclone (Ambien) came out, doctors were all excited about it, because it was presented basically like benzodiazepines without the disadvantages (addiction, withdrawal, people adapting and cranking up the dosage). In the end it turned out, that zopiclone is just not as pleasant, but still people get addicted and withdrawal and what not. About the same story can be told when benzodiazepines came out and they used barbiburates before ...

The thing is, whenever there is a 'new' and largely unpopular drug (like Baclofen), there is a huge gap in negative information about it and a lot of hopes and promises about what it can possibly do, all of which don't rely on real-life experiences but on artificially created highly medically controlled environments. Don't rely on it. If the world would work like that, heroin and cocaine would probably be the primary medical choice against everything.

Baclofen acts very very similarly to GHB, just without the GHB receptor. GHB has a low affinity for GABA-B in low dosages, but a higher one in high dosages (which is very relevant to addiction/withdrawal and abuse). When the affinity for GABA-B increases, it largely suppresses the effects on the GHB receptor. That means in extreme dosages, GHB acts mostly on GABA-B and not on GHB receptors, in contrast to low dosages, where its the opposite of that (so to speak, in high dosages it becomes more and more identical to Baclofen). The disturbance of GABA-B is what is believed to cause most of the extreme effects of withdrawal and also the involuntary 'deep sleep' aka medical coma that happens on larger dosages.

Baclofen withdrawal:
Quote:
Withdrawal symptoms may include auditory hallucinations, visual hallucinations, tactile hallucinations, delusions, confusion, agitation, delirium, disorientation, fluctuation of consciousness, insomnia, dizziness, nausea, feeling faint, inattention, memory impairments, perceptual disturbances, pruritus/itching, anxiety, depersonalization, hypertonia, hyperthermia, formal thought disorder, psychosis, mania, mood disturbances, restlessness, and behavioral disturbances, tachycardia, seizures, tremors, autonomic dysfunction, hyperpyrexia, extreme muscle rigidity resembling neuroleptic malignant syndrome and rebound spasticity.

This is practically identical with GHB withdrawal, and its not an exaggeration like you would find in a prescription drug insert. Its just going to occur on sufficient dosages in sufficient time. I was on high and low dosage GHB withdrawal countless times, and on high dosage withdrawal I got psychotic, had seizures, puked and urinated over myself and couldn't have any clear thought besides believing I would die any second. I never have lived through something as extreme as that.

Long stories short: Don't mess with that receptor. Your brain will inevitably adapt to whatever Baclofen you eat and that is an irrefutable medical fact. You won't get the same effect after sufficient time, you will only get withdrawal from not taking the drug. I don't know what genius got the idea to market it as autism medication, as the effects are pretty much similar to benzodiazepines. It are drugs that have short-term effects against anxiety symptoms and only withdrawal effects long term. For non-drug users: Everything you get from a drug, you have to pay back eventually. A drug that immediately relieves anxiety will make you equally more anxious in withdrawal (and withdrawals will take about as long as you used the drug, its not over after days to weeks, it just becomes more subtile). People get first-time hooked on drugs, because it roughly takes 1-3 month for the brain to neurologically adapt to some new drug initially. After that your brain learned and will adapt within days.

I don't know how to describe it to you, but to my very very exhaustive impression, GHB and GABA-B receptors are mostly used by the brain for extreme emergency situations. I believe its what's released when you didn't sleep for 80-100 hours or someone chops off your leg or you are in the middle of a war zone and you need to neurologically cope with the situation. Its what makes you sleep and get rest when you are in a situation where you normally can't sleep. Its means of last resort of your brain to keep you functioning when you are faced with the most extreme of the extreme. Its just my impression. Don't mess with those emergency mechanisms.

Scientifically, no one knows what GABA-B is for. It was only recently discovered. We don't understand the brain, don't be fooled into believing that we do.
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C0MPAQ
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PostPosted: Wed Jan 02, 2013 9:55 am    Post subject: Reply with quote

Its hard to find anything on real baclofen withdrawal, also because it is a drug used in other drug withdrawals and you mostly get those (positive) results on google. The other withdrawal stories you then mostly get are people who did low dosages against physically related issues. That's pretty much the same withdrawal situation as it is with morphine in chronic pain patients (meaning, real addiction and heavy withdrawal stories are very rare). Cases of addiction/dependency get more frequent if its about drugs used against psychological issues (like benzodiazepines against anxiety, opposed to benzodiazepines against epilepsy). Here is something I found:

Quote:
Hi im suffeing from baclofen withdrawal syndrome. I was cold turkeyed off it and suffered with violent retching. I was only on a small dosage. After they reinstated baclofen two weeks later the doc rushed my tapering and I suffered horrendous withdrawal symptoms... impending doom thoughts violent retching, I bled for 40 days, giddyness, dizziness, car sickness type symptoms, tinnitus, inner vibration, etc etc Its been 5 months now and I havent fully recovered...but things are getting better. Did you suffer coming off it or what were your symptoms when you were on it?

My muscle tone has not gone back to normal and my intestines seem to be asleep and I get soft serve etc(sorry for the detail) I also have a feeling of inner rotation mainly in the mornings. Ive had a list of at least 30 withdrawal symptoms... and was rushed to hospital a few times last year with severe withdrawal problems. Now i guess Im down to about 4/5 symptoms which come and go and not all at the same time so im hoping they will go to with time..ive been told they will..but its just guess work..Did you recover from coming off it? What dosage did you come off? Were you on any other meds at the time? What were your symptoms? Sorry for so many questions..Just trying to find people who have taken it and why I suffered so much. I was fine when i was on it!!!

Many Thanks and in anticipation.


And this.
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NJUSA
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PostPosted: Mon Jan 14, 2013 12:14 pm    Post subject: Arbaclofen Reply with quote

I read your comments about your experience with Arbaclofen from a year ago. I was wondering if your are still taking Arbaclofen and what has been your experience. Do the benefits last?
I am a scientist and can tell you that Arbaclofen is the isolated and modified version of two forms of Baclofen, which is a safe drug currently used for MS. We tried baclofen and saw improved executive functioning, but it only lasted 3 weeks. There is no side effect with this medication; it is one of the harmless medications out there, yet, the clinical trials are very slow and date is leaking out of the trials in small pieces.
How do you see Arbaclofen working for you now?
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Azernak0
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PostPosted: Mon Jan 14, 2013 6:20 pm    Post subject: Reply with quote

Holy thread bump Batman!

I am kinda surprised to see this thread again. I was searching to see if any news had been released yet on the study and saw that this thread has returned. My first post was a little 'bouncy', so this time I will state it as a more of a matter of fact.

I just recently entered the second year of the open label study. So I have either been on Arbaclofen (STX209) for either one year or two (assuming I was actually on it in the beginning. As I said, I am 90% sure). I can assure everyone that while I have been taking the pills, the effects are lasting. I have been taking 15 mg 3 times per day (THIS IS AS PER THE STUDY) and I have never been better. Let me boil down what it has done for me:

1. It keeps my baseline anxiety down and helps when I am in a 'stressful' situation. By 'stressful', I mean Walmart or a restaurant; it can be so bad that I enter Fight or Flight mode. The story I mentioned is completely true. I was sitting in line at my local Walmart, yawning as people bustled around me. It was right there that I noticed that I did not feel scared or feel like I needed to be prepared to throw down and fight. I was not excited about being in line but I was not feeling like I normally do. It was actually amazing.

2. Again, let me stress this one fact. My father is bipolar and takes several medications to help with anxiety and all the wonderful things that are associated with that (I am not bipolar). I saw this man, a true genius, become dull and bored because of the pills. Don't get me wrong: he needs them. He is, well, [i]dangerous[i] without them but I am not dangerous with those kinds of pills. Pretty much everything I had seen would be a high. If I am made artificially happy by a chemical component, it is NOT the same as me not being afraid because of a social situation. I have had no such effects, save for the VERY beginning, on Arbaclofen. Here's my analogy: you ever been angry at someone for something they did or said? At that moment, you are just seeing red and possibly even explosive. Now take that an add a month's time. You probably are not too concerned about what happened, providing it was not HUGE. You can think back and say "yeah, that was really messed up of them to do that but I've moved on." That is how I see the pills. It is not "I am angry. I am going to get drunk so I feel less angry."

3. When the pills fade (they last between 4-8 hours depending on how 'stressed' I am), it is really noticeable. Most of the time, it is kind of like this: I am doing A. A makes me think about B. B leads into C, which is a thought that makes me anxious. If it has been 7 hours since a pill, I pretty much need it NOW. Once I have a pill downed, it takes minutes for the feeling to fade. It is like a wave of relief comes over me (if I am having a minor 'episode'). Currently, I have taken a pill 5 hours ago. Because I am thinking about anxiety, I am feeling it a little bit but I don't need one because the pill is still beating the holy hell out of my anxiety. In about an hour or two, I will probably be playing a game and think "This is a great group. Each one of these character is a player. That player probably likes going to parties. Parties have lots of people. Annnndddd, pill time!" (yeah for Asperger's thinking!)

4. Probably the most important thing is that the pills have gotten rid of the anxiety enough for me to confront the problems and concerns I have because of my condition. Because of the pills (in my opinion), I was able to get into a work program though VR. As small of a stepping stone this is for everyone else, this is huge to me. Frankly, I could not even think "I need assistance" before I had the pills. It is probably just because I can see a "Before" and "After" pill. Rolling Eyes

5. There is some change in functioning. I have a couple objects of great importance to me. One is a wooden axe handle called "Stick" (yeah, Azernak0 is a little weird...). Before, if I did not know where Stick was, it could become a big problem. I could not think about ANYTHING else until I found Stick. Remember the bathtub scene from Blazing Saddles, where the Mayor is looking for his rubber ducky. It is not so much that he needed it; it was that he did not know where the heck it was! With the pills, those kind of freakouts are far less often. The little things are huge; trust me...

6. Last Thanksgiving was the first real big social event I attended when I was on a full dosage (15md 3/day). I sat at the table and chatted. I ate (lots of people can turn my stomach; there are times where I bring entire meals home from restaurants because of this fact, despite being ravenous) and thoroughly enjoyed myself. My best friend was there and after the events kind of died down, I got to talking to him. He is the only person I have willingly told how much it has helped (this is true even now). I mentioned that that it was the first Thanksgiving I was on a full dosage. His statement? "I was actually going to ask. It is noticeable how much more comfortable you are."

I will type the same thing I wrote to the doctor conducting the study in my area:

"I can say without a shadow of a doubt that the tablets work. Recently I went to a concert and ‘moshed’ with the rest of general admission. Scores of people pressing against me, all shouting in unison, the heat wave from the pyrotechnics, the stench of so many people breathing and sweating, getting bruises practically everywhere, and I loved every minute of it. I did not feel anxious or worried in this situation in anyway and was able to enjoy the concert to the fullest. Contrast this with me being completely unable to go to a grocery store without entering Fight or Flight before the medication, and I feel that my life is flat out better because of this study.
I still have some anxiety and fear in completely safe situations if it involves an ever changing environment, enough stimuli, and people. If fifteen milligrams three times per day makes me feel so much better, I am curious what a higher dosage might mean. I would love to be able to see."
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MomofHFASD
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PostPosted: Tue Feb 05, 2013 12:11 pm    Post subject: Abstract thought Reply with quote

Do you think that Arbaclofen has helped you with abstract thougth? Reading emotions and social cues? Thank you so much
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