Steven Shackel's opinions on drugs, therapies and other ALS/MND related topics

I have been researching ALS/MND and communicating with PALS, CALS, Doctors and other Health Professionals, Medical Researchers and Complementary Medical Practitioners for well over a decade. As a result, I am frequently asked for my opinion about certain drugs, therapies, research and other ALS/MND related topics.

Many of these questions are either covered elsewhere on this website or, because they are simply my opinion rather than verifiable fact, have no place elsewhere on the site. To make it easier for users of this website and to save me constantly repeating the same information in emails, speeches, telephone conversations, etc. I have stated my opinion regarding some frequently asked questions below.

Most ALS/MND related topics are usually covered as fully as possible on the pages listed in the Contents bar to the left. If my opinion is not stated on those pages I trust you will find it here.

Steve Shackel

RILUTEK/RILUZOLE
I have never taken this drug but have communicated with many hundreds of PALS that have. My conclusion is that the majority seem unable to tolerate the side effects, which are severe in some cases, and only a small percentage seem to report any significant benefit from taking the drug.

I would not take it because of its recorded deleterious effect on liver function. I do not believe the claim that it can "prolong life by approximately 12 weeks" is scientifically justifiable or even provable given the variable manner in which all but "textbook cases" of ALS/MND can progress.

If a PALS can tolerate the side effects and has a rapid and aggressive form of ALS/MND, taking this drug may be justified. I would caution that every effort should be made to support liver function if this drug is used. It has been reported that the drug seems to work more effectively when taken in conjunction with antioxidants.

STEM CELL THERAPY
This is potentially one of the most significant medical procedures ever discovered. There is little doubt that it will soon be possible to replace dead and damaged motor neurones. For PALS with advanced neurodegenerative symptoms this is wonderful news but stem cell therapy alone is unlikely to "cure" ALS/MND.

Until the cause of systemic motor neurone dysfunction and death is known, simply supplying replacement neurones will not remove the cause of the illness. It is quite likely that "replacement", stem cell generated, motor neurones would also be disabled by the very thing that killed the original cells.

Stem cell therapies will probably benefit mankind in ways we have not even considered. There is a very real possibility that stem cells can be used to restore motor neurone function after the process that initially destroys them has been isolated and halted.

AMALGAM FILLINGS
Despite repeated "official" denials, there is evidence that heavy metal toxins released from dental amalgam fillings may be directly or indirectly implicated in a number of chronic illnesses. In Europe, lobbyists are attempting to have the use of amalgam fillings outlawed.

Dental amalgam fillings containing mercury may remain stable in some people, as officially claimed, and cause no known side effects. It seems highly likely that amalgam fillings could become "unstable" in a number of instances. Mercury is extremely toxic and its effects cumulative so it seems far more likely that side effects have not been open mindedly investigated by "official" sources.

Numerous highly credentialled researchers and observers have noted elevated mercury levels in people with amalgam fillings. It is believed that in some, if not most, individuals mercury may gradually leach from amalgam fillings and accumulate elsewhere in the body. If mercury were able to affect the central nervous system it could result in catastrophic neurological dysfunction. This dysfunction could conceivably replicate the effects of ALS/MND.

Although I am not convinced that mercury or other heavy metal contamination is the sole cause of ALS/MND it seems highly likely that it may contribute towards the cascade of events that facilitate neurodegeneration. There is ample evidence that PALS and others with degenerative illnesses could be reacting to chronic, toxic stressors.

If mercury is being released from metal amalgam tooth fillings it could well cause sufficient systemic stress and provoke degenerative illnesses. If this is the case it would be prudent to have any fillings removed and replaced with non toxic alternatives.

Ensure that the fillings are removed with great care.

It has been recorded that toxic levels of mercury are released in the process of amalgam removal. Ensure that the practitioner removing the fillings takes every precaution to prevent you (and the dentist) from inhaling or swallowing any of the material being removed.

There are a number of extremely informative websites devoted to the topic of amalgam fillings. Many can recommend the precautions that should be taken when amalgams are removed.

CHELATION THERAPY
Many of the PALS I have communicated with over the years have attempted to "detoxify" their bodies, thereby removing heavy metals and other stressors, by undergoing chelation therapy. With few exceptions, most reported that they felt much better whilst undergoing chelation therapy.

Only a tiny percentage have reported that chelation therapy achieved its goal of halting neurodegeneration. In these few cases where long term improvement was reported the PALS was using other therapies and supplements and had also made significant lifestyle changes.

I have not experienced chelation therapy but have vicariously shared the disappointment of people that spent a great deal of time and money and failed to get well. Perhaps chelation therapy does help to detoxify the body and infuse it with the elements that are required for good health but when the process is discontinued any improvement seems to decline, sometimes rapidly.

As a part of a holistic healing regimen, chelation therapy may have a place but I have seen no evidence that it will "cure" ALS/MND or halt the neurodegenerative process in the long term.

I am no expert and can only report what I have seen and heard. Perhaps it will help you.

EDGAR CAYCE'S REGIMEN
Edgar Cayce (pronounced Kay-see) was a devout Christian who discovered that he had an ability to diagnose and often recommend a treatment for a sick person whilst he was in a trance. The Edgar Cayce biography "There is a River" best describes this process. There are numerous Edgar Cayce related websites if you wish to discover more about this remarkable man.

Cayce was not a doctor but was often able to describe (sometimes extremely controversial) methods to cure diseases that were "incurable" or life threatening. He outlined a treatment for somebody with a neurodegenerative illness believed to be ALS/MND. It is claimed that the treatment was successful.

The problem with using this same treatment for all PALS is that Edgar Cayce's suggested remedies were often specifically and even strictly for the person to be treated and might prove to be ineffective when used for a different person with a similar medical problem. In extreme cases, his treatments could even prove harmful if employed to treat somebody other than the person it was originally recommended for.

Based solely on feedback I have received over the years, it would appear that, with very few exceptions, Edgar Cayce's remedy for treating ALS/MND is not generally effective when used to treat this illness. This is hardly surprising because Cayce treated the "imbalances" that caused illness in each individual. He would sometimes suggest quite different treatments for people with virtually identical symptoms.

If Edgar Cayce were still alive I would like to think he could suggest various ways to treat ALS/MND, as appropriate for each individual. To the best of my knowledge, he did not recommend a variety of ways to treat PALS. The results of following the treatment used to treat one patient has not significantly helped any of the PALS that have contacted me to report their progress.

If Edgar Cayce's suggested treatment for ALS/MND has resulted in a cure for anybody other than the person it was designed for I would be delighted to stand corrected.

HOMEOPATHY
Homeopathy confounds western medical science by actually working when, according to all known scientific evaluation, it should have no effect at all. I have benefited from the use of homeopathic remedies in the past and know or have communicated with hundreds of people who also feel that homeopathy helped to treat an illness.

Of the people that have used homeopathy to treat ALS/MND many have reported initial symptomatic improvement. Used in conjunction with supplementary medications and a regimen that usually includes lifestyle and dietary changes some PALS feel that homeopathy is helping. To date, none have reported that homeopathy alone has halted neurodegeneration.

WET CELL BATTERY THERAPY
As I understand it, wet cell battery therapy as used to treat ALS/MND was originally intended as one part of a broader treatment regime. The suggested treatment is relatively expensive and beneficial results, if any, can take up to two years.

It has been suggested that the "ritual" of daily wet cell treatment may be as beneficial as the treatment itself. If this is the case there are far less expensive and time consuming alternatives that could be used. In over a decade I have not received any feedback reporting that wet cell battery therapy alone has helped in treating ALS/MND.