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The Scientist: Some with ALS Becoming Medical Mavericks

HopeManaging Editor's Note: My husband and I had a good friend who was diagnosed with ALS (Lou Gehrig's disease) and who quickly fell into the rabbit hole of mainstream medicine which told him (at the vaunted Cleveland Clinic) we can offer you Prozac for the anxiety. Our friend found "Patients Like Me" a website that I would equate to many of the autism biomed boards - used by patients (or family members) unwilling to accept hospice care and managing disease as their only choices.  Jim found a neurologist who immediately tested him for heavy metals and began him on a biomed protocol of chelation, supplementation and more. Jim retained his strength for over a year. In time, the ALS began to ravage his body, and he died from a stroke or heart attack early one Sunday morning.

This article below talks from The Scientist is about another treatment that is a topic of discussion in our community. Coincidentially, Teri Arranga of Autism One interviewed Kerri Rivera about the sodium chlorite treatment on Voice America Radio here.

Medical Mavericks

ALS patients take their fate into their own hands, self-administering an unapproved chemical and collating their results online.

By Jef Akst | July 1, 2012

Eric Valor used to be an avid surfer, catching waves off the California coast near his home in Santa Cruz every weekend, and occasionally early in the morning before work. But in October 2004, his left foot started misbehaving, failing to find the correct position on his surfboard when Valor popped to his feet. “The foot would drag on takeoff, resulting in poor placement and subsequent wipeout,” he recalls.

After a series of minor muscle twitches, his dragging foot was the last straw, that finally got him to the doctor. In April 2005, Valor was diagnosed with amyotrophic lateral sclerosis (ALS). By that fall, his surfing days were over.

Valor is now paralyzed from the neck down, and he breathes with the help of a respirator. But he’s not giving up. In June 2010, he learned of an experimental ALS drug called NP001, being developed by Palo Alto–based Neuraltus Pharmaceuticals. Then just beginning Phase I trials, the drug targets ALS patients’ overactive immune cells, attempting to reduce the chronic neuroinflammation associated with the disease. It seemed promising to Valor, but unfortunately, his disease was too advanced for him to qualify for the trial. “I made various attempts to get [enrolled], but failed,” says Valor, who responded to The Scientist via e-mail because his ventilator limits his speech.

The more I learned about sodium chlorite, the more excited I got, and I felt it was too important to keep a secret.
—Ben Harris, ALS patient

If he couldn’t participate in the trial, maybe he could get the drug another way, Valor reasoned. After an exhaustive literature search on PubMed, he identified the drug’s “cruder” precursor as WF10, which is available for purchase abroad. But he quickly learned that importing it from Thailand would cost more than $12,000 for a year’s supply. He then set out to see if he could get his hands on what he suspected—based on a literature search and a 2006 patent tracked down by fellow ALS patient and friend Rob Tison—was the active ingredient of NP001: sodium chlorite, which is used in water-purification kits for campers and in municipal water treatment.

Last June, Valor began taking oral doses of the chemical, which is not approved for the treatment of any disease. And he thinks it’s working. “I have improved breathing, which makes transfers [off his ventilator] much more comfortable,” Valor says. “My voice is louder and speech somewhat clearer. I am able to flex muscles that were previously still (though not enough for useful movement).”

At first, Valor didn’t tell other ALS patients about his experimentation, hoping to first establish that it was safe, “but by September, it had leaked,” he says. Medical physicist and ALS patient Ben Harris, who was enrolled in the NP001 trial, was the one to get the ball rolling. NP001 had improved his strength, speech, breathing, and ability to swallow, and he wanted to keep taking the drug after his participation in the trial ended. “The more I learned about [sodium chlorite], the more excited I got, and I felt it was too important to keep a secret,” says Harris, who also responded to questions via e-mail due to limitations associated with his disease. So he started a discussion thread on the website of Cambridge, Massachusetts-based biotech ALS Therapy Development Institute (ALS TDI), sparking widespread interest that helped launch the do-it-yourself (DIY) trial. Now more than two dozen other ALS patients are taking oral sodium chlorite, and recording their results on the social networking site PatientsLikeMe.

It’s not the first time PatientsLikeMe has hosted this sort of DIY experiment. “This is kind of an ongoing process on our site,” says company cofounder and chairman Jamie Heywood, a mechanical engineer turned biomedical researcher who also founded ALS TDI in 1999, after his brother was diagnosed with the disorder. Just last year, for example, Heywood and his colleagues published an analysis of data reported on PatientsLikeMe by ALS patients taking lithium carbonate, a chemical approved for the treatment of bipolar disorder (Nat Biotech, 29:411-14, 2011).

But this sodium chlorite case “is particularly interesting” and “radical” in many ways, Heywood says. “People are buying [sodium chlorite] from chemical companies; [they’re] not buying a human therapeutic.” Furthermore, most patients reporting their data on PatientsLikeMe are taking sodium chlorite orally, whereas Neuraltus is giving patients NP001 intravenously. And Heywood is still not sure if sodium chlorite is the true active ingredient of NP001. “Without question in ALS, this is the biggest topic of conversation that we as researchers [and doctors] are talking about right now,” Heywood says.

But the reports on PatientsLikeMe have put Heywood in a tough position. On the one hand, “I think there’s a moral obligation to deliver value in real time,” he says, looking at an analysis of the data on his computer screen. On the other hand, “I know that it will be misinterpreted by many people,” he laments. “The hard question for us is, ‘What’s the right thing for us to do? How do we share that information?’”

Fortunately, the risk is moderate, Heywood believes, as do the patients taking sodium chlorite, most of whom have done some research before ingesting the chemical. “I have done hundreds of hours of research to prove to myself that what I am doing is safe,” says Harris. “Moreover, if you add up the time spent by other forum contributors, we are probably talking about thousands of hours. . . .The story is not about a few desperate people with a terminal illness grasping for anything. . . .This is a solid scientific venture, it just so happens it is being done outside of an academic institution.”

 

Comments

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Benedetta said, "when are the American people going to wake up?" Benedetta, it would certainly help if you were the BBC- Benedetta Broadcasting Corporation.

I have heard of several stories of people getting well from ALS from treating the bacteria Borrelia, also referred to as Lyme Disease. Thus, I think that likely many with ALS have the same stuff that is causing all the other auto-immune disorders -- immune dysfunction from too many pathogens and toxins.

more correctly that would be, "CCSVI Locator" and there is a US and a Canadian version.

Of course the geologist friend who expressed outrage at the lack of genuine vit d research & shenanigans when it came to the vit d and MS research was sputtering a bit when I said but it's the same tricks with the vaccine studies." His daughter has seizures developed shortly after hep b vaccination.

I'm sorry about the loss of your friend. I hope sodium chlorite truly is a breakthrough for those who suffer with ALS.

If anyone wants to see the latest in MS research or get in touch (Canary Party) just go on internet to CCSVI locater. I beloved there's a Canadian & US one. It's like AoA for MS. Ccsvi stands for chronic cerebro spinal insufficiency.

Me too, Benedetta, It's a tough one! Thanks for your info, Joanne. I wmeould comment more but I'm on vacation w a cell phone. So many people with MS and ALS are doing so really great real time research. A geologist in town has done a ton of research on vit d. A friend commented, though that the "scientists" didn't study the right form of vit d & are basically squashing it. So much happening with stem cell research and angioplasty and even vein bypass (my brave friend did it with a top thoracic surgeon. Of course Lyme is mentioned lots, too. Best of luck to these guys! Canary part has some natural allies. Yes, some engineers, scientists are taking matters into their own hands & godspeed to them. Pharma is not acting in people's best interest.

http://lookingatlyme.blogspot.co.uk/2012/03/recovery-from-als-motor-neurone-lou.html
Congratulations to David Martz, MD the 2011 recipient of the Invisible Disabilities Association Research Honors Award.

In this video Dr Martz touches on his personal story of being diagnosed with ALS (Amyotrophic lateral sclerosis) known in the UK as Motor Neurone Disease or Lou Gehrig's Disease in 2003.

In time he realised that some of his arthritis symptoms could indicate an underlying condition of Lyme Disease although initial testing came back negative. However one test eventually came back DNA positive for Lyme Disease and he was treated aggressively on long term antibiotics making an amazing recovery.

I had the privileged of meeting Dr Martz at the London ILADS conference in 2010 and listening to his personal story - as he described many symptoms I had also experienced I found my self nodding in agreement. My diagnosis was not the same but I was surprised how many of my symptoms were as he described. Arthritis and muscle weakness, difficulties climbing stairs, difficulties lifting even small items, difficulties raising from a chair/bed, difficulties rolling over in bed or walking across a room, swallowing problems of course that just didn't describe that constant unremitting pain.

Dr Martz recovered and opened a clinic in Colorado where with a group of doctors they treated 850 patients with possible Chronic Lyme Disease many of them with a diagnosis of MS (Multiple Sclerosis) Parkinson's and ALS or Motor Neurone Disease.

At the London ILADS conference he discussed his research findings which he is hoping to publish shortly.

From the Invisible Disabilities Association here this is a list of what he is hoping to publish, they need to be disseminated far and wide among patients and doctors dealing with these Neurological diseases :-

8-year follow-up case report of antibiotic-responsive ALS-like illness;


Objective functional improvement in 15 patients with ALS-like disease;


Antibiotic-responsive Lyme-like illness in 40 rural Coloradoans;


Outcomes of 90 ALS patients treated with extended antibiotic therapy;


Case report of antibiotic response of biopsy-proven pulmonary sarcoidosis;


Minimal complications of extended antibiotic therapy in 330 patients; and,


A clinical study of 850 patients treated with extended antibiotic therapy for “Chronic Lyme Disease”.

Thank you Dr Martz for your work in helping others at a time in life when most of us would sit back and enjoy some peace and relaxation and thank you to your lovely wife for her patience and support in helping you in your efforts.

ALS
It at the top of the list for dreaded disaeses - the very, very top.

I have had two in my family - who has died of ALS and neither were blood kin to either my husband or I.

So when is the American people going to wake up that these autoimmune diseaes are not in the genes but we are being poisoned.


ALS is so bad - that is the one diesase that a bone marrow transplant should be standard treatment.

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