国外ALS患者DIY药物-2

五龙戏珠

替父亲发布后续的部分，我不是英文专业水平有限还请谅解。
本来不想再发的，怕有的病友看了想“太多”，希望大家理智行事。
得这病，人生的天空有一半是黑色的，
可是，请想一想家人是怎么想的，即使他们从来不会说一句安慰的话，
即使，也许没有即使，
心同在，心相连，互助、互勉、互慰，你不是一个人，我也不是

Ben: I understand that the likelihood of one of these ad hoc studies leading to a significant discovery is low, but that is only half the point. It is a horrible feeling thinking about the hundreds of substances out there and wondering whether one of them helps but you are missing out.

本：我知道参加这些特设研究来找寻一个康复的方法可能性有多低，这只是我的初衷之一。但是想想看有多可怕，成千上万种物质有可能（对ALS）对有所帮助，却没被人找到。

My hope is that the information will ultimately be analyzed by the mathematicians at PatientsLikeMe and if PLM opens their database to the public, this data could be analyzed by anyone around the world. It will be admittedly noisy but mathematical algorithms have become sophisticated to the point that they can filter out much of this noise.

我希望这些信息最终会被“我这样的患者”的数学家们分析编译并公布于众，就可由全世界的任何人取得并进行分析。这可帮助过滤许多数学分析时的杂项。

On the one hand, I do hope that I hit pay dirt with one of these trials, but the chance of this happening is unlikely. However, my actions today may help the 44 year old male with a wonderful family and nothing but good things to look forward to who gets this diagnosis next year, or next decade.

一方面，我希望能在这些试验中找到些有效的物质，但这种情况的发生是不可能的。而且，我今天可以帮助一个44岁男性和他的幸福家庭一直向前看，另外就是期待着能帮助到明年的新患者，或者10年后的患者。

As long as those engaging in Do it Yourself trials are open about what they do and there is a mechanism to record what they do, they will succeed in moving the search for a cure forward, even if they fail to help themselves.

那些从事“自行试验”的人所做的，会有一个专门机制来记录，帮助寻找治愈疗法的每个人都是成功的，即使他们所做的并没能挽救自己的生命。

But in order for this to happen we must vanquish the shame associated with DIY, and that shame comes primarily from the medical community.

但是我们要做DIY也有必须克服的困难，那就是来自医疗机构的阻力。

Kevin: Are you taking part in any other DIY trials?

凯文：你还在参加其它DIY试验吗？

Ben: Yes. My criteria for a DIY trial is 1. There has to be some evidence that it helps, most likely from a mouse study, 2. It has to be “cheap” and 3. It has to be safe.

本：是的。我做DIY的原则是：1.必须有实例证明是有效的，最好用老鼠做过实验2.必须的“便宜”的3.必须是安全的

Kevin:  I opened up your Patients Like Me page and can see the other treatments you’re taking. It looks like there’s a continuum of treatments you’re trying: from the homeopathic where you’re doing things like taking garlic supplements and eating pecans, and then on the other end of the continuum are treatments like sodium chlorite where you’re concocting your own version of a drug that is being tested. Is that right?

凯文：我看过你的“我这样的患者”的网页，发现你在尝试其它治疗方法。都是有些类似的持续性：如服用大蒜营养物质和核桃，然后又自己做计划连续使用亚氯酸钠。是否如此？

Ben: Yes, there is definitely a continuum. Most of the “treatments” people are trying are in the form of diet or supplements. Even taking sodium chlorite orally (like drinking it instead of injecting it like I do) might be called a supplement. Then there are some prescription drugs that some have tried over the years, like lithium.

Then there’s a treatment called C60/Fullerene — that stuff is really out there and it probably the riskiest thing I am doing because there are no human toxicology studies on that.  But the mouse and rat studies showed no toxic effect even at doses 1000 x what I am taking.

本：是的。当然要持续进行。多数人采用的“治疗”方法只是如同减肥或服用补药。

或者口服亚氯酸钠（取代向我这样的注射方法）只能称之为补药。其中 有些处方药已经被试用了多年，比如锂。

现在有种叫做C60/富勒烯（C60/Fullerene）-这种物质是在那之外的，这可能是我试用过的最危险的物质，因为从未有人亲身证实过没有毒副作用。但是在老鼠身上的1000多实例证实是无毒的。

用什么能融化

辛苦了