Chronic Diseases Demystified Website describing ALS or Lou Gehrig disease from experimental point.
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Not every culture in this world recognizes Christmas tradition but more than billion people do. This should be sufficient for my needs. It´s time to test the power of Christmas day as it is time of unity, peace and contemplation when people tend to believe in miracles more than during ordinary days filled with typical hustle and pressure modern life unmercifully creates.
🎄Xmas Spirit
Despite the omnipresent commercial pressure we still are very well aware of how special the Christmas time is. It is supposed to be more peaceful period of the year during which people should slow down and find more time for their family and friends. It certainly is not about those gifts (they are still nice though and can express how we value each other), but mainly about the time spent together in joy and possibly also about remembering those who already left us.
Maybe such description is too idealistic and people are mainly crazily shopping, then eating too much and they are not that much thinking about the higher things which go beyond the usual daily matters. In my opinion people should try to conduct certain wider retrospective and attempt to reconsider some decisions, look at it again from different angles or with already necessary overview, time gap and empathy. Unfortunately unhappiness and disasters don´t take a pause during this time …
💔When It Strikes …
First I need to apologize the reader that I am incorporating the topic of ALS even into my Christmas post but in fact, I am rather incorporating Christmas into my another ALS post written during Christmas time. People who are familiar with basic ALS incidency are aware that on average, every 90 minutes there is someone new receivng ALS diagnosis (only in the United States). This unfortunately means there will be families who get hit with such bad news during Christmas time. Obviously there are many other diagnoses which can ruin the happy Christmas atmosphere but ALS is probably the most brutal and ruthless syndrome one can imagine (“no chance”).
If the neurologists hesitate for too long (it happens often!), perhaps it is not an absolute surprise, but it is still a terrible moment – hearing a death penalty, not at the court but in hospital while not committing any crime. My life experience is not only tragic though. This is why I have put together this website and described ALS from different angles than strangely behaving medical science which does not inform entirely openely about ALS 🚩.
There is practically no ALS theory which would be based on confirmed facts or unproven but highly suspected hypothesis (yet not disproved either!). I think every new ALS patient needs to be not just utterly unhappy, confused, scared but also very disappointed and frustrated about this. It is hard to believe there is no progress at all.
The biggest issue here is also a total lack of credible and logical vision. Where is any vision how the ALS fight should be lead? I cannot see any. What I see is unintelligent trial & error approaches which lack transparency – results are poorly designed and re-packaged old drugs (under different names). These drugs individually don´t work so researchers are considering cocktails of them, as Dr. Bedlack informed about it.
However there is a tiny hope. In fact there is a real progress made by humans, not by experts but by experimenters, not by ALS researchers from hospitals and labs, but by highly intelligent amateurs, hence the need for ✨Christmas magic✨ …
Sometimes it is not science who possesses the best knowledge and recipes for the given problem. It is people with real life experience, which still has not been scientifically examined, understood and described, who can give much better answers and hints regarding what and why shall people do. One can hardly find more relevant example on this world than ALS syndrome.
I have found out both me as well as Dr. Richard Bedlack use the same STAR acronyme. For Bedlack it means research project named Study Of ALS Reversals. For me it is a name of the protocol/procedure one can try to apply (free), ALSSTAR or ALS* where STAR means Stabilization And Recovery.
While I am not aware of any real success Dr. Bedlack would achieve within 10+ years of his work, I cured myself with it and I see how others successfully applied similar simple techniques, these are mainly long living ALS patients (20+ years) or even untrusted cases of full recoveries (always denied by science without evidence it was not ALS!). However I am entirely unsuccessfully in spreading this information for free, getting attention to it, requesting scientific exreview of it.
This means me and Dr. Bedlack are both very unsuccessful (each differently) in helping people to control/neutralize/survive ALS. 🤷♂️😔
“I based my actions on the same scientific base.
What is different are my initial assumptions and interpretation of those with science shared findings.
Below is the equation of my personal success which nobody finds interesting, nobody tries to disprove seriously … Isn´t it a pitty when people are still dying and world is clueless?”
— John Underhill
💡Unusual Concentration Of Coincidence
It is a known and relatively adopted opinion that ALS development is a very gradual and insidious (at least the limb onset, the bulbar is more aggressive). Some neuroscientists believe the hidden and unknown factors are present in the organism for a long time prior the disease onset („latency“). This means the problem has to go through couple of phases, at first unnoticeable, then hardly noticeable, then noticeable, then already worrying, then frightening, finally followed by already confirmed diagnosis after many months of uncertainty.
It now appears that the risk factors for Alzheimer’s disease, ALS, and other chronic neurodegenerative diseases are present for much of our lives, but they are neutralized by a properly functioning immune system. They remain dormant and undetected as long as the immune system can contain them. When the immune system fails, or when immune cells are prevented from finding their way into the brain or spinal cord, these diseases take advantage of our reduced defenses1.
Now the big problem is that science is unable to detect ALS 100% reliably in any of those stages, yes even the last one. How could physicians refuse Nelda Buss recovery otherwise? This is extremely dangerous as it means there is some health condition which looks exactly like ALS, which can make you paralyzed and which is not GBS but as per physicians it also is not ALS and at the same time it is unknown what it really is. Pretty weird, right? The facts confirm this ambiguity though. The only decisive factor is death – this is the ultimate and pretty unethical imperfect confirmation of ALS (“it was ALS; a synonyme for death rather than anything else“). Medical science has no big issue with it though. This is extremely disappointing.
Another logical consequence of above is that even if someone was able to recognize ALS much earlier and came to doctors with such finding they would not help him, they would not believe him and when he died 3 years later on ALS (confirmation he was right), they certainly would not even apologize him and would hide behind some excuses, typical phrases, and they would wash their hands of the case (case closed, nothing to deal with). Early diagnostics regarding ALS not followed by other changes simply would not make things any better and that´s why practically every patient is intentionally kept in uncertainty for a long time (12+ months, I read even about case where it took 48 months to get diagnosis). Without knowing what is wrong in the sick people (“mechanics”) we cannot make any progress, no matter how early we can diagnose.
Science entrapped itself in circle because it allowed breaking the fundamental medical ethics, now they cannot find a good way out while retaining face. Public cannot expect these people will actively strive for ending this nightmare. Instead they can expect another status quo moves – within next 10 years, perhaps one additional riluzole clone or something new more or less equally worthless, will be their answer to ALS. Unless people won´t say – ENOUGH!
“Coincidences mean you’re on the right path.”
— Simon Van Booy
However there is also another and already much more promising logical consequence of above insidious and fuzzy nature of ALS (if correct). If some person could recognize early enough something is not right and start introducing certain changes immediately, mainly by experimenting and executing steps which, strictly in general, effect against those ALS long suspected factors like oxidative stress, neurotoxicity, and hidden infections or related inflammation/immunodeficiency, then in theory, I repeat in theory, such person could basically get cured if lucky enough (time, time, time is a factor!). That would be awesome, right? Absolutely amazing! But wait, there is a catch. How could this person know, let´s say it is a man, that he counteracted the ALS causing factors? How could he know it was early stage of ALS?
Perhaps he would not celebrate at all, it was just some infection, quite minor thing at the end, problem disappeared, no ALS paperwork in hand, great but not helpful in ALS demystifying at all! Otherwise how could he prove, his worrying symptoms would evolve in ALS later? Obviously he would not be able to prove anything. Just for your information this is already most likely a reality – this brave hypothesis is quite realistic, but you can try to disprove it 😉
Unfortunately today people demand evidence, if you don´t have it, they will not believe you. This leads to quite complex scenario which practically nobody would consider interesting and worth dealing with. Curing ALS is a desperately unsuccessful mission so far. On this website I have described my unusual and very unique story full of strange coincidence. Obviously the most important are that I had those symptoms and I had mother who was diagnosed with ALS (and died), but there are many more which it is hard to describe and pass on in a trustworthy fashion.
If I write that I had strange pains in exactly those areas (CNS) as my mother had, that I shared most of the symptoms with her including the exact location of early neurologic discomfort (right hand, wrist, thumb-index finger area) it does not help at all. If I write that later I found out that some ALS patients suffer with strange euphoria states like uncontrolled laughter and I have the same symptom written in my personal notes it also does not help. If I write I faced moments where I could walk for 10 min. and then my nerves were hurting and failing a bit, then of course, it does not help. Weird feeling when cutting onion? Come on, don´t be ridiculous! That would be the reaction, but then people are wondering why humans remain absolutely clueless.
What about the blisters and bruises which in theory could have appeared on any place of my body making it rather irrelevant, but surprisingly enough, they appeared exactly at those places of neuro-discomfort/very light tension but later sort of initial weakness? What about the finding of similar strange blisters and bruises mentioned in Lou Gehrig memoir? Too much of coincidence or not? There are more things to add on this topic, all could signify that I could potentially be that lucky man who really counteracted SOMETHING EARLY ENOUGH, but there is no way how to prove it … Anyway I can see the obvious links even between my experience and those other untrusted cases where experts as well as public are unable to clarify or explain anything.
I can only recall how I was fighting some tough symptoms which physicians were unable to recognize, how all got rapidly worse when I boosted my immunity and gradually recovered without any assistance of the healthcare system, still I was collecting notes on daily basis, taking photos.
Please, at least today, try to think in the “What if there is something in it” risky way and support it no matter how absurd it seems to you at first. Nothing less than human lives are at stake. If science does not make any progress, does not learn from its own mistakes, the despair will continue … My other post dealing with absurdity in ALS problematics could be useful too.
“The probability of a certain set of circumstances coming together in a meaningful (or tragic) way is so low that it simply cannot be considered mere coincidence.”
— V. C. King (Author of Titanic – Relative Fate)
⚡Striking ALS Back!
Well, actually there could be one possible way. It is quite smart way and very simple way but also very hard to get support for. By the way I never understood the unwillingness to experiment, when considering it is the only way as of now.🙄🤷♂️ Medical science and physicians do nothing with patients in practice, science will refuse everyone if symptoms are present but the damage is not significant or not there yet. Once the damage is there, they make everything worse by stating fatalistic outlook. Then they are trying to fight advanced ALS patients (as part of the research studies) when nerves of the patient are already in one fire, burning every hour, every day, week by week the sick person can be weaker and weaker. Medical science states 100.0% fatality stats but cannot explain those reversals or those strange cases like Nelda Buss. Anyway it is not a real problem for evidence based science who refuses ALS in this case (without any evidence).
So what about attacking ALS from the opposite end, like I did, despite it is definitely not clear what I was suffering with, preALS or ALS or MS – well that is also incurable, isn´t it? How would such strategy look like? We would basically fill the prevention gap using heuristic methods – we suspect, we are not sure, but we still give it a shot nonetheless, best-effort approach. Ideally every person feeling those symptoms should immediately apply the standard treatment I applied – what can one lose? But how could we measure the efficiency of such approach if we have no idea whether the cases are early ALS cases, i.e. 15+ months earlier actioned cases?
🧠Leverage Statistics!
Here I have simple answer. In my previous posts I described a fascinating and indeed controversial hypothesis that people use “false statistics” in case of ALS (Do you recall those COVID misleading stats too? Did you check the methodology used?). Besides the logical nonsense in ALS fatality stats there are quite detailed stats of ALS incidency as practically every patient will end in hospital and these figures could be leveraged. Only hospitals and special centers confirm the diagnosis and also register the case. If these stats started to decrease in time, it would be nothing but statistical and thus scientific enough evidence that the treatment protocol applied way earlier is somehow effective. I would not call this ALS cure, but I would call this ALS breakthrough.
Humans would find a way how to beat ALS by not letting it to develop in full scale. If there are 5,000-6,000 new cases in US, then what if it was suddenly 3,000-4,500 followed by smaller and smaller figures? It would be a big moment raising attention (new wave of ALS awareness) but it would be a different success than people are striving for with imperfect allegedly life prolonging drugs. Instead of magic drug development, ALS would be gradually eliminated using good old approach (knowledge what to avoid) and today entirely missing piece of the overall mosaic (prevention, early treatment with higher rate of success). Such vision is rational. People should think about it. It would indeed work, but who would support such foolish proposal?
🤷♂️What About Existing Patients?
Prevention is nice thing, it is non-existent today so it would be phenomenal success but still what about those unlucky, who did not have this information, or who did not believe in its value and could not apply it soon enough? I always tried to include everyone, every ALS patient as I believed in my mother recovery to her last moments (insane for many, I know). Maybe it is a mistake but very humane mistake. I still don´t want to leave current patients and conclude the same as doctors: „We have nothing for you, sorry“. I am convinced they should also apply the therapy and get familiar with Nelda Buss case.
If I had ALS and managed to reach the plateau (by beating infections and detoxifying harmful neurotoxic substances) I would try to move a finger every day, every morning and every evening I would do the same test, over and over, at least for couple of months, and who knows … Anyway Nelda made it, despite she had to be 🚨reminded🚨 to trying it first! Without her case I would really hesitate to write it here, because it would immediately make me looking like damn fool. This way I will be hopefully called only fool which is perfectly acceptable for me.
Also I am not sure if NurOwn could help me (no, I am not doing hidden advertisement here), but as a plateau case I could strive for it – reconstruction after eliminating the progressive pathogenic factors makes much more sense. On this website I repeatedly criticized stem cell therapy when applied without solving the first part of the problem (price, value, ethics etc.) The weak paralyzed organism is prone to opportunistic infections and other risks are associated with that bad state. I would not give up dreaming, but not just dreaming, I would be attempting for the impossible as Nelda was. After all, what else could I do anyway all day long? In my wildest dreams this could form the complete hybrid therapy applicable to spectrum of cases. I think bright future is already close … Sceptics, you have been warned, wait for it 😉
🌈What Is True Miracle?
A miracle would be when someone recovers while society gave him no chance. But miracles need to be supported, there are always certain components of miracle which precede the stunning outcome.
Given the situation in information exchange including all the fake news, disinformation, primitive censorship, lack of interest, quick emotional denials having nothing common with scientific methods (pioneering spirit, case studies, experiments, measurements, logic), it would be REAL MIRACLE if people assessed the information presented here correctly. Then there is a chance this miracle would LATER ON enable secondary miracle. We all know what this secondary miracle could be …
Anyway let me wish you all merry Christmas, good health and happy New Year! And do believe in miracles as they indeed happen sometimes! 🌈🍀🌠✨♾
“Never in human history there was an opportunity to do so little (few clicks) to save someone else from slow undignified death.
That´s the power of right information delivered in right time, never underestimate it.”
✨🎄🎁👨👩👧👦🌠💖
🍀☮☯♾🌍🎲🕵️♂️🧠 ⚖📱🖥🤔
ALS Experimental Theory as described on this website – Request Its Examination & Contribute to breakthrough …
“I would rather honestly & sooner than later try out 1000 crazy, absurd but easily accessible treatments, protocols, techniques suggested by empathic amateurs with unusual and ALS related life experience, than accept death sentence and “no chance” conclusion from professionals with highest authority (who however admit they indeed are clueless!). And by the way, that´s exactly what I did, that´s what Nelda Buss did. It all seems that miracle has to be well deserved. Open mind, indomitable will, rational experimentation and healthy intuition were our tools.”
References
- 1.Schwartz M, London A. Neuroimmunity: A New Science That Will Revolutionize How We Keep Our Brains Healthy and Young. Yale University Press; 2015.
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