Tuesday, June 18, 2013

ALS Update

Note (8/21/14): See my latest thinking on ALS: Anesthetics and Glucocorticoids for ALS.
Alright, here's what's going on from the ALS front line. Based on my research and my wife's experience with this awful disease over the years, I figured out that certain anesthetics, such as propofol, sevoflurane and halothane, can reverse ALS symptoms within hours after anesthesia. The effect can be spectacular. It turned out that this was the easy part. The hard part is to convince the ALS research cottage industry to take these anesthetics seriously. So far, up to five ALS patients have reported significant improvements after undergoing unrelated medical procedures that required anesthesia.

Many in the ALS community have figured out that the ALS research industry is not interested in finding a treatment. Their only goal is to continue to raise as much money as they can while making sure that a cure is never found. The pharmaceutical industry is only interested in trying out proprietary drugs which they can legally use to exclude rivals from the market while they're raping an unsuspecting public with exorbitant prices. Unfortunately for ALS sufferers, most of the patents on anesthetics have expired. It's inhuman and sickening. If I could afford it, I would pay a reputed lab to conduct a human efficacy trial but that is just a dream. Better yet, I would finance several medical clinics outside the country and immediately offer the therapy to those who can make the trip. Patients would pay only if they see improvements.

I could kick myself in the rear end for not having figured this out much sooner. All the evidence I needed was there. Years ago, my wife could still walk. I would have contacted some anesthesiologist in some other country and pay for the treatment. Unfortunately, my wife is currently bed ridden, under 24-hour nursing care and forced to use a ventilator for breathing. Our only hope is that a significant number of ALS patients in less strict countries can get the treatment. Their success stories would hopefully make the evening news and force the FDA and other health authorities to do something. In the meantime, because of the callous indifference on the part of those who are paid good money to find a treatment for this disease, thousands of people continue to die a horrible death.

See Also:

Anesthetics and Glucocorticoids for ALS
Treat ALS with Anti-Inflammatory Drugs
The Evil Lie about ALS


Anonymous said...

Yeah, the current medical system with pharma, doctors, idiotic and ghostwritten promotional scientific papers, unpublished studies, etc, is often pretty fucked up. I'm currently reading a book by Ben Goldacre called Bad Pharma which deals with many of these issues.

The things you write about ALS and those anaesthetics is interesting. Does it require high anaesthetic doses or could similar benefits be obtained with a maintenance dose? Also, do you have more specific theory about their action? Is it related to GABA, excess glutamate induced neuron death, etc? I don't have ALS but I'm interested in the mechanism and treatment.

Louis Savain said...

Hi Juha,

Thanks for the comment. Apparently, it requires a relatively high dose of anesthetics to get a therapeutic effect but the results can be pretty spectacular. In my research, I discovered that ALS is a genetic disease (i.e., caused by one or more mutations, inherited or not) that affects a number of receptors in the nervous and immune systems. Some of the same types of inhibitory receptors used by synapses are also used by inflammatory monocytes. If the receptors are defective, the result is neuro-excitotoxicity and inflammation. So in a sense, ALS is caused by a hyperactive immune system that targets motor neurons. Since inhibition is impaired, motor neurons remain overexcited and eventually shut down and die out from stress.

Some anesthetics (propofol, sevoflurane, etc.) activate just the right types of receptors and, as a result, reduce the inflammation, ischemia and oxidative stress that associated with ALS. It turns out that the alpha-1 subunit receptors are the only ones affected in ALS patients: GABA-A, glycine, glutamate, acetylcholine, serotonin, etc. Unfortunately, since most of those receptors are used for inhibition, there is no way to separate the hypnotic effect of an ALS drug from its anti-inflammatory properties.

As an aside, propofol has also been known to completely eliminate Parkinson's disease tremors for up to 8 hours after anesthesia.

Anonymous said...

Louis, thanks for your reply!

Lately there's been been lots of discussion about inflammation causing (or being a part of the process of) mental illnesses such as depression and even psychosis. I'll have to read through of what you wrote in that comment with more time, explore it, etc.. :)

lcplusplus said...

Hi Louis,

In my opinion, because of the magnitude of the situation, North America is the last place I'd be looking for treatment. A cure is the last thing Big Pharma and the FDA will approve of. Hell, they don't even acknowledge the definition of cure.

Your best bet is to seek treatment in Dusseldorf Germany, they seem to have all the best treatments (with stem cells) in the world right now that actually seem to generate positive results.

Its no coincidence that professional athletes, etc... are flying over there from all around the world for unorthodox treatments such as Orthokine.

I hope it turns out well.

lcplusplus said...

Just found this:

The XCell-Center in Cologne, Germany is the first privately owned center in Europe to specialize in regenerative medicine using adult stem cell therapy. It opened in 2007. The worldwide demand for their treatments were so overwhelming that it was almost immediately operating at full capacity. In January of 2009, XCell-Center opened a second location in Dusseldorf, Germany. Both XCell-Center facilities feature the latest medical equipment and technology. Their specialized medical team of German physicians includes: neurologists, endocrinologists, cardiologists, radiologists, hematologists, and pharmacologists. The XCell-Center works in accordance with German law and European guidelines. They currently treat Diabetes and its complications (Erectile Dysfunction and Peripheral Artery Disease), various eye diseases, orthopedic diseases and sport injuries, stroke, spinal cord injuries, heart disease and degenerative diseases such as Multiple Sclerosis, Parkinson's, ALS and Alzheimer's. This center is the first private institute worldwide to hold an official license for the performance of entire stem cell therapies. In accordance with German tissue law and the German Medicines Act, the center has a GMP (Good Manufacturing Practice) certificate for the extraction of bone marrow."