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Monday, May 21, 2012

ALS Patients Conduct DIY Drug Trials

*If you want to hear the interview with Ben Harris, advance SoundCloud to 8:00.

A group of people suffering from Amyotrophic Lateral Sclerosis (ALS) or Lou Gehrig’s disease have started cooking up their own drug therapies in do-it-yourself drug trials.

Frustrated with the slow pace of clinical drug trials, they say they don’t have the luxury of waiting.

ALS, which affects about 30,000 Americans, causes cell damage in the brain and spinal cord, and gradually robs people of the ability to move, speak and eventually to breathe on their own. Life expectancy is about two to five years after diagnosis.

“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.”
– Ben Harris, ALS patient

The Wall Street Journal reported that the patients have figured out that sodium chlorite is the main ingredient in NP001, a compound made by Neuraltus Pharmaceuticals.

The patients have started either drinking or injecting themselves with sodium chlorite on their own, and they’re recording their progress on websites, including Patients Like Me.

Ben Harris, 45, of Bloomington, Indiana, is one of those patients. He was diagnosed with ALS last year, and was part of the Neuraltus clinical trial. When that ended, he decided to join the DIY trial, and began injecting himself with sodium chlorite.

Since Harris has difficulty speaking, Here & Now producer Kevin Sullivan interviewed him online. Part of that transcript is below.

Here & Now Web Chat With ALS Patient Ben Harris

Kevin: Ben, first of all, thanks for agreeing to take part in this interview.

Ben: My pleasure.

Kevin: I know this is a very personal question, but can you start off by describing what your condition is like now? For example, you can obviously type, but what are your physical limitations now?

Ben: Please don’t hesitate to ask any questions, no matter how personal they might seem. My life is an open book. At this point I am at the tail end of being able to communicate verbally and being able to eat. I would say in a few months I will not be able to utter a word, and I will need to have a feeding tube placed. All my muscles are affected, walking is slow and climbing stairs is getting a little challenging. I have to exercise caution. One might not even be able to tell by observing me that there is anything wrong in those areas other than speech, but it takes a great deal of effort to appear normal.

Kevin:  After the Neuraltus clinical trial for NP001 ended you started taking sodium chlorite on your own, injecting yourself with it. Are you still doing that and if so, do you feel it’s been effective?

Ben: Yes I am. Although the positive effect of sodium chlorite did begin to wear off near the end of the NP001 trial, and it seems to have little effect now, other than a possible slowing of my disease, I did have one hint that it may still be helping about one month ago. After my one of my self infusions, my swallowing improved, just as it had done in the beginning and early part of the study. This lasted for about one week and then faded.

I was just about to give up on it and this event has me determined to stick with it as long as I am able.

Kevin: Do you think there’s a possibility you could be chasing ghosts by taking the sodium chlorite, hoping for something that might not be there?

Ben:: Certainly, however, sodium chlorite is different from any other substance tested for ALS, either formally or informally, in that it has actually improved the status of those who took it, albeit temporarily. Nothing has ever done that.

Kevin: You’re sharing the results of taking sodium chlorite by taking part in an ad-hoc study, where you share your information on a website called Patients Like Me. How do you hope that information will be used? And do you feel that the analysis of that information could end up helping you?

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.

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.

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.

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.

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

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

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.

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?

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.

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?

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.

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.

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 researchers has 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.

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?

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.

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?

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.

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

Ben: Thank you.

Guests:

  • Amy Marcus, Wall Street Journal reporter
  • Ben Harris, 45-year-old medical physicist diagnosed with ALS in January 2011

Please follow our community rules when engaging in comment discussion on this site.
  • Claus Vind

    please tell Robin Young that  “Sodium Cloride” is just clean ordinary kitchen salt

    • Robin

      Sorry! I should have spelled it, and I tried to enunciate, it’s sodium chlorite..

      Best
      Robin

      • http://hereandnow.wbur.org/kevin-sullivan Kevin Sullivan

        yes, and here are Ben’s remarks on sodium chlorite:
        Sodium chlorite is an oxidizing agent. If you live in a city with greater than 50,000 people, then you are drinking sodium chloriteSodium chlorite is used to purify water.And since it is there are extensive animal and human studies on the toxicology of sodium chlorite. The levels that we are taking are far below the toxic levels. the real risk of injecting sodium chlorite, is not the drug but the risk of infection.

        Kevin, H&N producer

        • Claus Vind

           thanks for the explanation to all.

          Regards

          Claus
          Copenhagen, Denmark

          • Ellenmccurtin

            Thank you WBUR and Ben Harris for this interview! You are doing us all a huge service by getting this kind of info out there to the public about DIY drug trials for life-threatening conditions which do not receive much funding or attention.  I hope other stations will follow suit.  I hope you will do a follow-up on this story, or consider doing a series on this very important topic.

  • Jrichardson24

    Touching. My thoughts and prayers go out to Ben and his family.

  • Meryl Faulkner

    It’s sodium chlorite – NaClO2 not sodium chloride which is NaCl – table salt. Na=sodium, Cl = chloride and the O2 is oxygen, so the compound sounds similar when you say it but its not table salt. I misheard as well and thought they were saying sodium chloride rather than sodium chlorite. Its used in the manufacture of paper and Wikipedia has an entry which explains all the uses.

  • TimfromIdaho

    Cannabis!  I am not claiming cannabis can cure or reverse the effects of ALS.  However, research has shown that the compounds in cannabis can slow neurological deterioration  from neurological injury and disease.  We need more research but the status of cannabis as a Schedule 1 drug and the attitude of the federal government vis a vis researching the positive potential of cannabis is making that research nearly impossible.   People are suffering and dying and there is something, cannabis, that may help but is denied to patients.  Reschedule and get busy on proper research.

  • Nikkia

    I know Ben personally, he a very smart man with who I would trust with my life, in fact many have. If he sees value in these drugs he probably right.
    Hang in Ben there if anyone can figure this out it would be you.

  • Plbaker

    you have the wrong compound name; sodium chloride is just table salt

    • Robin

      Sigh. Our bad, read down, we should have spelled it, but we’re not wrong, it’s sodium chlorite with a t.

      Best
      Robin 

      • Dnseaman

        given the neuropathic conditions and inevitable typos to ensure, it is highly understnadable that typos will occur. Apology not required.

    • Dnseaman

      Table salt is underestgimated. It has been the most important compound on earth documented as far back as the old testmanet.
      so then: Why not?

  • Forbiddenhealing

    Sodium chlorite, aka MMS has done wonders with many diseases from cancers to HIV. It oxidizes pathogens and organic toxins the way a healthy immune system does. 
    More info….see http://www.forbiddenhealingforum.com

  • Kathylharris

    Never give up the fight!

    • Dr. Buckley

      Ben we are so grateful to you for sharing and bringing to light all that you have to endure due to the prohibitive drug trial process.  Your work is so important!

    • Dnseaman

      You are very kind. As a patient of GBS may I just say that human mortality remains at 100%.

  • Teresa

    I wonder if he has heard of or ever tried drinking Kangen Water. It is the strongest antioxidant on the planet due to negatively charged free electrons.  Couldn’t hurt. http://www.tryantiagingwater.com

  • Dnseaman

    My endless esteem for Ben Harris. Ho openness and caring of his feloow man is inspiring, particularly given the extreme fatigue he most certainly suffers.
     I am a survivor of Guillain-bat=rre Syndrome, another- yet more rare- PNS demyelating neuromuscular disease. Is there any indication that this treatment may be effective for patients of GBs and CIDP?

  • Carol Foster

    I tried MMS for my chemical sensitivities and I passed all kinds of funky things including parasites and what looked like a cigarette-shapped stone about one inch long, i.e. gallbladder or some organ stone.  The stuff worked for me.  You have to mix the MMS with an acid and drink it several times a day, each day increasing the dose.  My dentist came down with ALS about a decade ago.  He went from being a fanatic tennis player to sitting in a wheel chair and was about to give up practicing dentistry when he met up with a well-known anti-mercury dentist.  This dentist removed all the silver fillings from my dentist’s mouth and began the slow process of chelating out the mercury and other heavy metals from my dentist’s body.  Today my dentist is back to playing tennis, refuses to put silver amalgam fillings in his patients and refuses to perform root canals.  I truly believe that environment (including chemicals and heavy metals including the silver fillings which contain 50 percent mercury) contribute in large part to many autoimmune diseases.  My ex-husband suffers from MS and when he first found out he had this disease I BEGGED him to  get a heavy metals toxicity test and to have all his silver amalgams removed and start detoxing the chemicals out of his body.  He opted for chemotherapy instead and has progressed from a cane to a wheel chair.  My son and I are of the opinion that had my ex at least tried removing his silver fillings and started a detox/chelation program, his life would not be what it is now.  There are many of us who have tried non-traditional treatments, most of which require no pharmaceuticals and therefore are not trial-tested, and have experienced amazing results.   We exist on a totally different plane from the rest of the traditional medical establishment and our doctors/dentists don’t care about waiting for pharmacy-underwritten medical trials, we go by how we feel after undertaking our rather unique treatments. 

    • Benharris

      Can you please ask your dentist friend to post his ALS history on PatientsLikeMe? This is valuable information but is completely wasted if it is not documented. There are several people on PatientsLikeMe who have had their metal fillings removed, and if a pattern emerges this could be a significant discovery. But without this information it will remain undiscovered.

    • Charlie

      BS – names, dates, specifics? I’m a PAL.

  • Mark Pankuch

    If the world was run by Guys like Ben, wouldn’t it be a different place. Thanks for your unselfish actions and your love of man kind. Your wife and son should be proud! I know I am.

  • Heather Nickens

    What an amazing and thoughtful interview.  Ben Harris is making his mark in the world, even as he suffers, his willingness to search for a cure is unrelenting. Ben is courageous in his battle, and continues to inspire all whom he comes in contact with.

  • Julian

    My uncle ben is an amazing person… It stuns me that people cannot put themselves in these patients shoes and understand why they’re doing the DIY trials

  • Amy Harris

    I have read this over about three times now. Ben is truly an inspiration, to never give in  to the cards that are dealt to us, accept what comes your way and fight, not to rely on hope but never to let go of it either. I would never in a million years think that this could happen to such a special person and when I read articles like this and speak to him, I realize how precious all moments in life are, both good and bad and that I need to be the best that I can be to myself and those I come into contact with. I hope that his sharing of information will make a difference in the treatment of ALS and some day a cure. My heart goes out to all those with ALS and their families .I am determined to share this information as much as I can .

  • Forbiddenhealing

    Please don’t stop treating yourself, not just ALS but cancers, atherosclerosis, Alzheimer’s.
    Chronic disease all have on thing in common, oxidative stress is the root cause. Depending on where the the problem is, treatments can be customized to get results.

    You can read studies till you’re a 103, or take a new look at the evolution of healing, and get busy reversing problems and preventing more. Drugs are usually the wrong answer.
    Take a look at my website  http://www.forbiddenhealingforum.com  , or  greenmedinfo.com,  or   mercola.com .

    The secrets long kept from the public really work,….just need to know the approach and get started w simple items from health food stores.

    Most ailments require a combination of natural items to succeed, not just chlorite or peroxide or….put em together until results happen…never quit.

    Best, Capt. Randall

  • http://www.facebook.com/profile.php?id=1521153707 Kevin Feal-Staub

    It is such a powerful premise, to harness the capabilities of the internet to gather and organize data that people gather about their DIY trials.  Ben is right when he points out that people have been doing DIY trials on all sorts of remedies since the beginning of time.  The internet allows intelligent people to organize and analyze this data, taking from anecdotal evidence to experimental evidence and hopefully leading to results that help many people.  Keep up the brave work!

  • http://www.style64.blogspot.com/ Lisa Ann

    This is a courageous endeavor. My Mother is in the late stages of ALS and we are working with hospice. In a mere 11 months she has gone from a normal life with some limitations to complete bed ridden and on the verge of the end of her life. This is a sad disease. Someone has to do something maybe Ben can make a break through

  • Lawsonajphd

    Ben is truly an inspiration to those of us who know him as a gifted medical physicist, but this interview shows even more insight into the heart and soul of the individual and yet again another reason to be inspired.  Stay the course, fight the good fight, and love your family every moment of every day.  Your determination and  perserverance in the quest of maintaining health and transparency to your journey are exceptional, but then again so are you.

  • CB

    Thank you to Ben Harris and all the warriors out there fighting every day for their lives while the rest of us take breathing, eating, walking, and talking for granted. My father has ALS and this motherf’ing disease has taken almost everything from him. I am thankful for people like Ben who are doing what the FDA and Government is not.
    http://www.treatalsnow.org

    “ALS is not un-curable. It is under-funded.”

  • Philly D

    This is such a powerful interview. I hope the medical community can get it together and realize that the doctor is not always the smartest guy in the room and the internet has really changed the rules of medical treatment.
    Ben’s drive and determination are so inspiring. His dedication to friends, family and fellow patients is a lesson for us all. “We made a promise we swore we’d always remember. No retreat. No surrender.”

  • http://www.facebook.com/people/Joanne-Drayson/1192967004 Joanne Drayson

    Ground breaking research in the field of ALS or as we call it in the UK  Motor Neurone disease has been done by David Martz MD – currently in the process of trying to get his research published after his own personal journey being diagnosed with ALS but recovering after treatment for Lyme Disease- I met this amazing man (7 years after his ALS diagnosis gave him 6 months ) at a conference in London in 2010. He discussed his personal story and his research at a clinic he opened treating patients with ALS, MS, Parkinson’s  - absolutely amazing.  here is a link to a recent award ceremony   http://lookingatlyme.blogspot.co.uk/2012/03/recovery-from-als-motor-neurone-lou.html 

  • Sdfere

    Have you tried C60 Fullerene yet? DIY trials have already begun around the world, but none with ALS as far as I know.

  • Micheal Hussey

    I think I have never seen such blogs ever before that has complete things with all details which I want. So kindly update this ever for us.
    http://www.interventionist.biz

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