国外ALS患者DIY药物-3

五龙戏珠

Kevin: From what I’m reading, with C60/Fullerene, you put some sort of carbon material into olive oil. Can you explain how that works?

凯文：我读到，在服用C60/富勒烯（C60/Fullerene）时，你加入了一些炭材料在橄榄油内。能解释下起什么作用吗？

Ben: C60 Fullerene looks like soot, because basically that is what it is. When carbon burns it naturally forms these soccer ball shapes (too small for the naked eye to see) and is a black powder. It was discovered in 1985 and scientists and biologists have been tinkering with it ever since. The main problem with it is that it does not dissolve in water.

Only recently it was discovered that it dissolves really well in vegetable oil. So now scientists are ‘catching’ up and trying it out on animals.

When it dissolves in vegetable oil it turns purple or browning is the oil is green like olive oil.

There is some concern that if it is not properly dissolved it could be harmful hence the somewhat involved preparation of mixing it for days on end, putting it in a centrifuge and then filtering it.

The concern is most likely unfounded, but safety is important so I am doing it anyway.

本：C60/富勒烯（C60/Fullerene）看起来有点像煤烟，其实它就是。用炭燃烧会使其成型（肉眼无法分辨），是一种黑色粉末。它被发现于1985年，科学家和生物学家很长时间对其束手无策，主要原因是它不溶于水。

最近才发现它在蔬菜油里溶解性很好。所以现在科学家们重新“拾”起它来并开始在动物身上实验。

当它溶解于蔬菜油时会变成紫色或棕色，如果油是如橄榄油般是绿色的话。

有一个需要注意的问题是如果不是完全溶解的话会对人身造成伤害所以必须做好充分的搅拌准备才行，放入离心机后过滤。

这种担心是毫无根据的，但是安全是最重要的，所以我一直在这样做。

Kevin:  When the Wall Street Journal reported on this DIY movement to treat ALS, they spoke to doctors and researchers, who said one concern is that no one really knows for certain what changes Neuraltus — the company doing the NP001 clinical trial — has made to the sodium chlorite. So you might not even be taking the same thing as what’s being administered under the clinical trial.

凯文：当“华尔街日报”报导了关于“DIY”治疗ALS的事迹，这使众多医生与研究者得知此消息，可他们非常质疑：是什么原因使Neuraltus做的这个NP001人体实验－被你们证实为是亚氯酸钠的呢？你完全可以不必再进行类似实验。

Ben:  These are very valid concerns, but what makes this kind of statement difficult to listen to without eliciting a strong negative reaction from me is that none of these doctors or researchershas taken the time to read our discussion threads or join the conversation.If they had they would understand that although Neuraltus has not publicly stated what is in NP001, we have figured it out, and if any of these doctors or researchers would take the time to read the discussion forums and follow the paper trial that we have uncovered they would agree. The offhand skeptical remark that “we don’t know what NP001 is” is made out of sheer laziness. What is equally offensive is the implication that because we are ‘mere patients’ we are incapable of understanding the science or biology surrounding this (or any) drug. We are a group of extremely well educated, careful and determined people who have collectively spent thousands of hours pouring over academic journals and patent applications.

本：这种想法是很正常的。但是对我并没有多大消极影响是因为那些医生和研究者们从未花费任何一点时间来读我们的实验报表或参加我们的学术讨论。虽然Neuraltus还未公开NP001的成份，我们已经证实了。如果任何一位医生或者研究者读过我们的实验报告并跟踪我们的实验进程他就会明白这都是真的。这种毫无道理的怀疑“我们不知道NP001是什么”是一种偏见。这并不公平，认为我们是“少数患者”而因此无法理解科学或者生物学对这（些）药的态度。我们是一群受过高等教育、细心而坚毅的人，我们用了上万小时完成高等学历教育并收集专利。

Kevin: What about your family? How do they feel about you trying these treatments on your own? Or do they feel since you’re a medical physicist (who previously worked in radiation oncology) you have an area of expertise that other people with ALS don’t?

凯文：你的家人怎么样？他们对你自己试用这些药物有什么想法？他们是否认为你曾经作为医药物理学家（曾致力于研究射线肿瘤学）与其它ALS患者有着本质的不同？

Ben:  I think my background does help immensely. I understand the science behind these things, I understand the mathematics of the chances and I am not blinded by hope.

As for my wife — she trusts me and pretty much leaves the decision on what to try up to me. She sees me spending literally hundreds of hours researching these things and knows that unless I felt they were safe I wouldn’t do them. From the outside it seems like a reckless endeavor but on the contrary these are very well educated guesses. I have a son who is 7 and he is completely unaware of what I am trying.

本：我认为家人的支持极大的帮助了我。我明白这些物质的科学原理，我明白如何用数学数据分析，我从未放弃希望。

我的妻子－她相信我并且一直力挺我去做这一切。她知道我用了成千上万小时去调查这些物质除非确定是安全的否则不会去试用。外界看来或许这样做很鲁莽其实正相反，这些都是有根据的推测。我儿子今年7岁了，对于我所做的一切他毫无所知。

Kevin: I was wondering, how much longer you plan to do this? It sounds like you’re spending a lot of time and energy researching and working on treatments to try and stop the disease, but are you giving up something else – maybe the limited time you have left with your family?

凯文：我想知道，你打算这样做多长时间？你一直花费了太多时间和精力用来调查研究这些物质的疗效，是否因此放弃了其它一些东西－只给家人留下了很少的时间？

Ben: That’s a great question. The instant I was diagnosed I changed my lifestyle. Prior to my diagnosis I traveled extensively for my job. At times spending as much as a month on the road at a time.

I missed the majority of my son’s childhood from age 2 to 5, some of the most precious years of his childhood. That I did merely to earn a paycheck, not to save my life.

I’m still working full time but I no longer travel and as soon as the clock strikes 5 I close my laptop and stop working and put work out of my mind. I devote every minute of the evening to my wife and son. I am a night owl so as soon as they go to bed I dive into the DIY research.

I plan to do this until I am not longer physically able to take care of myself. When I reach the point where I can no longer walk or move my hands it is pretty much game over.

本：这个问题非常好。从确诊开始我改变了自己的生活方式。那之前我四处奔波，日复一日努力工作。

我错过了我的儿子从2岁到5岁的大部分时间，这对他来说几乎是童年最宝贵的一段时间。当时的我只想赚钱，并不是为了挽救我的生命。

我现在仍然满负荷工作但不会满世界飞了。每到5点我就关掉电脑停止工作清空大脑。晚上的时间放下所有与妻子和儿子一起度过。我是夜猫型的，晚上他们睡后我会又钻进DIY研究中。

我想一直做到无法自理生活为止。到那时我应该不能走路也无法举起双手了，也就意味着游戏结束了。

Kevin:  Ben, take care and best of luck to you.

凯文：本，保重并祝你好运。

Ben: Thank you.

本：谢谢。

用什么能融化

辛苦了