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ALS – Reasons Of Failure

This entry is part 29 of 34 in the series ALS Experimental Theory

In my fight for raising awareness of ALS and its alternative explanation I have written another post in which I try to summarize the main reasons why mankind is struggling for so long in making any significant progress. Seven is lucky number so I hope the seven reasons of failure will help with changing the situation and at least one success story comes soon. Or do we already have a medically approved success?

1. ALS Disease Complexity

An obvious reason. The disease is a very complex and hard to decipher. I continue in studying more articles, more scientifical works and I´m still finding new interesting information and possibly new links to what I already know. I´m strongly convinced the disease can be thought of as a network of factors which people already basically know – the problem is science applies irrational conventional methods which do not work in this case. Please note what I wrote in my Verdict post. It is a disease of higher order and it requires different methods. More on that in point #6.

2. ALS Reputation

This is also obvious reason but many people who haven´t understood the power of human mind can have problem realizing this or believing in this. Some people still think we are just biological organisms, a mass of bones and flesh which somehow lives and moves and human intelligence is just a consequence of some evolution laws. However there is tremendous amount of evidence it is all much more complex. Human mind is incredibly powerful tool and it really affects our lives and our physical bodies. There are theories which state any disease starts in the mind. It presents so extreme and generic shortcut that it will probably outrage many people right away. Nobody is able to prove it but nobody is able to deny it. Why? Because we don´t understand what our thoughts actually are. However every person knows that thought actually exists and it is SOMETHING. It is not nothing. It is something like energy. Thought is actually expressed and we all know this. Some thoughts make us more happy, more optimistic and encouraging and some can make us frightened, excited, angry or depressed. How is this possible? Science knows. I would say thoughts are some early versions of feelings and feelings are triggers causing our physical bodies to react – this is where the chemistry starts. Our bodies react with hormonal activity and hormones do many things. They are like messages sent within the body. These messages need to be produced somewhere and it is our glands like adrenals or thyroid and others. If messages are produced then there need to be corresponding consumers. And of course there are consumers, cells of our organs which react by producing something in response, perhaps another hormone or important enzyme. This whole system is very complex but everyone should just realize the bottom line – our body parts and organs basically communicate through this hormonal network and many crucial functions depend on it. It is not surprising that nervous system is heavily involved. I will further study this system yet but for now we should really remember that we can be in certain control here – we decide how we behave, what we think and how we react. The overall objective we should strive for is homeostasis, an equilibrium. Once this is understood and accepted we can start regulating ourselves, we may know what to do to and to which direction we should converge, whether it is emotional state, food income, physical activity or resting. The body supplies us with great amount of signals which we just need to listen to and respect. The evolution really did its great job here. However the modern life is not greatly compatible with this and it makes us too often to go beyond certain limit or threshold.

When we go back to diseases and mainly those terrible ones like ALS we should be certain such diagnosis will become a great source of fear, stress and despair. Facing a problem like this is extremely hard. Knowing nobody in the world ever recovered, knowing the disease only progresses and makes life only worse, this all is translated into thoughts and feelings and presents huge load to our physical body. Now consider what we should already know – ALS is just a three letter acronym for a very complex state, a state characterized by certain hidden weakness, deficits and re-activated resident infections. Instead of getting a help from the health system (“how to get better”) one will receive a deadly diagnosis. Such information will incur additional load and just make everything worse. I witnessed this and I know what I´m writing about. Please realize the power of single piece of information and in which direction (up/positive, down/negative) it effects. More on this in point #7.

“Watch your thoughts, they become words.

Watch your words, they become actions.

Watch your actions, they become habits.

Watch your habits, they become character.

Watch your character, for it becomes your destiny.”

3. ALS Research Organization and Command

It is fair to admit I have no real link with any ALS research department and I make judgements purely on my impressions based on my “random” studying of this subject. I can be wrong but it looks to me the research is not well coordinated. In my opinion there is no systematic approach, it looks to me the departments can rather work in certain isolation and information exchange can be limited. The problem of such size requires innovative methods, it cannot be solved with 19th century scientifical approaches despite modern technology is involved. I personally am also worried about the effectivity of the research as it looks it is mainly concentrated in pharmaceutic industry. This industry is just one big old-school money machine. It produces drugs which don´t heal but it makes billions on it, a clear conflict of interest. I´m missing some real visioner with unconventional thinking and methods, something close to my No Limit thinking. Personality like Elon Musk but not interested in space traveling but rather in solving a real mystery in the medicine and saving thousands of people. I think the world of medicine really lacks innovation but in thinking – the thinking is too old school there. I believe that despite ALS is related to very small amount of people compared to cancer, diabetes, heart diseases it represents a problem which once resolved will resolve also many other diseases automatically. It will be a real jump in human knowledge. My thinking is following. Solve the toughest problem, despite it does not look the most important, and get reward in form of wide applications to myriad of other initially more important problems.

I would also mention the famous Ice Bucket Challenge. It was started in 2014, it helped to raise 200 million USD. I remember that time. I had strange feelings and despite I usually rather like various challenges I was sceptical. For me it looked too simple and I actually did not like this pattern of just raising money and hoping it will make any difference. It is really strange, when I´m thinking about it now. At that time I did not know anything about ALS and just saying the full disease name was a problem for me. However I was aware famous physician Stephen Hawking is suffering with this disease. At that time I was going through certain anti-system period. I kind of perceived global problems like environment, geopolitics and I already saw the disfunctional world of modern medicine focused on symptom suppressing drugs and pills without real healing. And these giants are to be given additional money? Nobody really knows what it is spend on in terms of research. Of course it is good if money went to support existing patients – devices, mobility support etc. Now it is 2021, seven years later, both the guys who started the challenge passed. What are the results? Science claims again they can have another drug which does not solve anything but perhaps, if you trust, then it can give few months more. In my opinion absolutely terrible results and I described my feeling in previous interview like post.

The findings from the trials, conducted by investigators at the Sean M. Healey & AMG Center for ALS at Massachusetts General Hospital, demonstrate that an experimental medication—manufactured by Amylyx Pharmaceuticals, Inc.—not only slows the progress of ALS but also has the potential to prolong patient survival​1​.

I don´t know what I would tell my mother when I read above statement. So it not only slows down the disease but it also has the potential to prolong life! Isn´t it a nonsense? If something slows down the disease I would expect it inherently prolongs life but guess what – here it is sold as a win-win achievement and by the way it again states the questionable result: 6.5 months of life. Perhaps just unfortunate formulation but this really depicts the success of decades of ALS research while consuming huge investments. What else then disappointment can we feel when reading this? Science is failing, it is fair to admit it. But I see a way.

This disease just requires different approach, a real global headquarters, real central command and systematic approach reviewing all the possible and already forgotten but perhaps wrongly forgotten theories. Centrally coordinated divide and conquer approach. If something like that exists, please let me know.

Unity is strength… when there is teamwork and collaboration, wonderful things can be achieved.

— Mattie Stepanek

When I was looking for a convenient quote I found this kid story – unfortunately he died in just 13 years, but what a personality he had to be in such young age. Incredible.

4. ALS Research uses old-school conventional methods

First I should state the same note regarding the source of my personal impression (same as in #3). Here I mean mainly the methods which I read about in those scientifical works. I personally see a big difference in below three problems.

  1. There is a possibly fatal disease for which treatment exists. Depending on the stage of the disease it is known patient has 60-85% chance to recover. Disease mechanics is known to a non-trivial extent.
  2. There is a fatal disease for which a known despite very rare recovery is known. Disease mechanics is unknown. Reasons for those very rare remissions are unknown too.
  3. There is a fatal disease for which no known case of recovery is known (100% fatal). Disease mechanics is unknown.

I would try to tackle each disease differently but it seems to me the science always applies the same generic approach. It is based on statistics, on bigger numbers, bigger populations of patients and science tries to find a unique factor among all the cases. This indeed is very hard task and in my opinion it can be very misleading. This is exactly what I was wondering about when reading about amyotrophic lateral sclerosis or multiple sclerosis. It means science can find a real trace but then it tries to find it in all other cases and if it is not there it is considered at most contributing factor but not highly significant. Similarly science can find real trace but then it uses the control set (set of healthy persons) and it finds the factor there as well. Again it leads to denying the trace and searching for something else. This is exactly the situation with EBV infection. It is reliably found in 100% of patients with multiple sclerosis but since it is found also in the control set, the conclusion is it somehow can contribute but is not the root cause. Can someone spot the real danger of such approach? Using such approach it is possible the disease mechanics cannot be found. One can always find a case where the factor is not present or present in 100% cases but at the same time present in healthy people.

These never ending comparisons with hundreds of people makes everything just too complex. It actually denies the unique aspects of individuals. The unique level of immunity strength including deficiencies, unique levels of some measureable property, organ functionality which is impossible to measure precisely today, unique predispositions going way beyond simple comparison single gene G1 looks like this in ill person while in healthy person it is like that. There can be complex unspotted patterns and combinations.

It is clear ALS falls into third category, science is not aware of single successful and permanent recovery (really? Please read on!). Instead of elimination of possible negatively contributing factors in one by one fashion the science is searching for ultimate factor or set set of ultimate factors in a very complex, confusing network of relationships in our bodily systems including today practically unmeasurable maze of microbial factors. However what if there is no such ultimate factor? The disease can be, and in my opinion most likely is, a network composed of many parts where no single part may be that dominant. I think it would be already found but the complex and compound pattern or combination comprising even factors neglected today can bring surprising results. However how can we find such combination? A million dolar question. Of course I have no guaranteed advice but this whole website stubbornly insists on certain approach which really differs from the scientifical one. It basically approaches the problem from the opposite end. We don´t know what is the ultimate factor causing ALS, we don´t know what is the necessary set of factors/conditions required to let the disease arise. However we know what healthy means. This is probably very controversial and shocking for many people but it is a valid scientific alternative and I would say also creative approach. The science accepts the patient state and tries to find a miraculous solution and it does not work. This approach is applied in many chronic diseses and we all know what the overall success is. If science did the total opposite and applied experimental method based on factor elimination consisting of all known health supporting interventions and measuring, monitoring the influence on patient it could provide new insights.

I plan to write another post where I will describe this approach again from my personal perspective. The introduction would be something like “What I would do if I was diagnosed with ALS or someone I know was diagnosed with ALS“.

5. ALS Patients are not cured at all

This is a known thing. Patients are told the diagnosis and then it is all on the patient and the family. Of course certain support is provided but not in terms of real treatment. It all is rather about the support implied by the patient gradual loosing of motoric functions. Those drugs which were developed so far are completelly useless. Another problem is the dilema whether to invest in stem cell therapy – an expensive treatment which most likely insurance company won´t cover, more over a treatment having no great results. It just does not work and if reader read this website end to end he/she may have good imagination why (experimental theory). Simply put it is all on the patient. Here again a generic non-ALS treatment could take place but there is no such thing yet and people probably think it does not make sense. What a mistake.

6. Possibly existing success stories are misinterpreted

Initially when I was thinking about the lack of single successful recovery from ALS I just accepted it. What can we do? But soon after that I started thinking again. There is approx 7.7 billion people on Earth. Amount of people diagnosed with ALS is very low but it is quite likely some person with ALS like symptoms already lived on this planet and recovered. Such person may not have appeared in modern physician office and thus may not have faced death sentencing diagnosis followed by absence of curing. Depending on the progress of the disease such person could actually recover from weird issues after some undefined time. Such person never realized what was wrong, what the problem was about, how it is called and that it is actually incurable state and described as demonic disease. I tend to believe many people (not just one or two) recovered from those weird preALS states characterized by already neurological problems. The thing is that the diagnosis comes rather later than sooner. Doctors still have some empathy and need to be sure. I recommend reading this short article​2​ desribing case where a man was given ALS diagnosis but it was wrong. Not nice case despite 10 million USD compensation. This means there can be and most likely there are people which won´t wait further untill hesitating doctor already states ALS (can be several months or even more after first concerns and doctor visit). Instead these people may escape from this deadly trap and start making dramatic changes on their own, they may find some alternative treatment and after some time they get better and recover. These or similar stories I know mainly from cancer related books where remissions are known. Some people even decided to not undergo tumor surgery and chose some alternative method and succeeded – tumor disappeared, immune system resolved that. This can get dangerous, of course, but we are owners of our bodies, we have free will and we make the final decisions and we need to carry the responsibility for our decisions. Big and related warning here are again ALS stories I read about. Of course there are people who just had no idea what is happening with them and these are unfortunate cases, nobody can say anything. Some stories I read were little bit different though. The people actually realized they really and intentionally overstressed the body, have not listened to signals and always preferred some other goal to intuitive self-protection. Lou “Iron Horse” Gehrig is representing the most famous case but I read even about other, normal people stories. I´m not writing this to make someone feeling guilty but the opposite – it can be a great help to such people. They can actually realize they could have escaped too and never got to such bad situation and this information can encourage them to believe they can actually escape even in case they are already in “deadly ALS trap”. These people should be those first to realize the ALS Experimental Theory can be valid to non-trivial extent, because they know what all they felt over years and thus can realize ALS is just the tip of the iceberg. My mother was definitely this case – now I know it, I have all the memories but I already cannot tell her and work with her.

I need to stay humble but after all the stories I read about and after my life experience I asked myself the same question. Is there any chance that even I was on the path to doom but managed to escape quite early?

I have also found another very promising information​3​ – please compare it with my findings summarized on this website, mainly my conclusion and diet recommendation. This is 100% match, anyone with ALS should get this information. I cite the whole abstract text below.

Background: Amyotrophic lateral sclerosis (ALS) is a devastating disease leading to death within 3-5 years in most cases. New approaches to treating this disease are needed. Here, we report a successful therapy. Case Report: In a 49-year-old male patient suffering from muscle weakness and fasciculations, progressive muscular atrophy, a variant of ALS, was diagnosed after extensive examinations ruling out other diseases. Due to supposed mercury exposure from residual amalgam, the patient’s teeth were restored. Then, the patient received sodium 2,3-dimercaptopropanesulfate (DMPS; overall 86 × 250 mg in 3 years) in combination with α-lipoic acid and followed by selenium. In addition, he took vitamins and micronutrients and kept a vegetarian diet. The excretion of metals was monitored in the urine. The success of the therapy was followed by scoring muscle weakness and fasciculations and finally by electromyography (EMG) of the affected muscles. First improvements occurred after the dental restorations. Two months after starting therapy with DMPS, the mercury level in the urine was increased (248.4 µg/g creatinine). After 1.5 years, EMG confirmed the absence of typical signs of ALS. In the course of 3 years, the patient recovered completely. Conclusions: The therapy described here is a promising approach to treating some kinds of motor neuron disease and merits further evaluation in rigorous trials.”

7. Success requires absolutely unique and rare personality

Above mentioned case of healing from ALS really is absolutelly recommended reading. Together with my testimony and recommended procedures the way out of the darkness can be seen more brightly. However you can ask, why such clearly medically approved information is not wide spread? Why nobody knows about it? Why there are still so many families hoping for next-gen effective treatment which however does not come? The answer is simple, we need more cases like that. My dream is this website will make a difference and people will start thinking in this alternative way. It really is hard to convince people to consider such simple treatment can work – if applied with iron discipline and determination.

I noticed there are basically two types of patients. For the first type time runs fast – everyone should recall again my words from first points (#1-3) of this post. There were people who wanted to fight and they indeed fought but the disease progression was fast and the way these people fight is actually counterproductive. The lack of information how to proceed and what to avoid is heavily contributing to this unfortunate state. My mother would be in this group.

Then there is a second group of people. It seems time runs slower for these people. They live much longer and there can be reasons for that. For example I noticed these people show dramatic change in their overall life attitude. Some turn to religion or eastern wisdom, it also seems they found some meaning in the disease. Their self-perception undergoes real change. They often find their way to some form of spirituality. The peace these people find can make a real difference because it can disable the deadly diagnosis and destiny stressful factors. On a physical level this most likely constitutes a relief to body so it can fight longer. Pretty logical, right? The problem is these people tend to not fight at all. In their minds they are already somewhere else and sometimes I would even think they are not interested in healing – it is perhaps the subconscious behavior. However they are in best position to realize it is not just an coincidence. They are given time to realize the desire to recover is the ultimate human trait. But they need to start somewhere and ignite the desire.

Now I can finish this post, because the success or miracle requires rare combination of above. It requires peaceful fighter equipped with experimental information how to proceed and what to avoid and gifted with slow disease progression giving a sufficient time to attempt for impossible. Perhaps the purpose of these people is to show others how a true miracle looks like.

“This task was appointed to you, Frodo of the Shire, if you do not find a way, no one will.”

— Galadriel

Lord Of The Rings – Galadriel´s message

References

  1. 1.
    Taylor M. Viral Ice Bucket Challenge Pays Off as New ALS Drug Prolongs Survival. LaboratoryEquipment.com. Accessed February 2021. https://www.laboratoryequipment.com/569835-Viral-Ice-Bucket-Challenge-Pays-Off-as-New-ALS-Drug-Prolongs-Survival/
  2. 2.
    Cattabiani M. $10 Million Verdict For Man Misdiagnosed With ALS. RossFellerCasey.com. Accessed February 2021. https://www.rossfellercasey.com/news/10-million-verdict-man-misdiagnosed-with-als/
  3. 3.
    Mangelsdorf I, Walach H, Mutter J. Healing of Amyotrophic Lateral Sclerosis: A Case Report. Complement Med Res. Published online 2017:175-181. doi:10.1159/000477397
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