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ALS – Future Outlook

This entry is part 27 of 35 in the series ALS Experimental Theory

In this post I changed little bit the format. I have decided I will give my very first interview on ALS and summarize again my thoughts. As a visioner I focused on future and shared my view.

Interview usually requires two people, an interviewer and interviewee. My problem is that I´m missing the second person, the interviewer. So while I´m just fine, and do not suffer with schizophrenia, I still had to take both roles and gave interview to myself. It is quite a fun to do this and challenge my own answers. Despite this weirdness, perhaps someone could find this format a more attractive than regular text or article. I myself have always liked reading interviews with great people! 😀👍

So you have put together this site which describes probably very alternative explanation of ALS disease which is definitely super ambitious. But how do you see the ongoing efforts of the medical science and the latest research news in ALS treatment?

Yes, I try to follow the scientifical progress from regular news reader point. Of course I wish all researchers every success or progress in this effort. However my own findings make me little bit sceptical or disappointed regarding the methods ALS researchers apply.

Really? I thought your own research is based on the findings of all these researchers so I would expect certain compatibility and shared hope. Can you clarify?

Hope I have always and you are correct, my theory – perhaps not complete, but still a theory, is based on work of many scientists – not necessarily ALS researchers. This is the first difference. If I recall all the news on this matter and compare it with my findings I´m rather convinced it cannot work well. I mean all those stem cell therapy phases or experimental drugs. I see a fundamental difference between my work and ALS researchers work.

That´s interesting. Can you describe this fundamental difference?

The difference is in ambitions and of course in the primary approach to the problem. My ambition is to track the disease from A to Z, from early symptoms to fully developed disease. Only once there is a complete theory covering this then work on identifying effective treatment options can start. I´m really interested in those risk factors but in my theory I would not call it a risk factor but a prerequisite or precondition. All ALS patient stories I read were compatible with this theory – they shared the common risk factors which means they met those preconditions. You can compare this approach with regular ALS research which focuses on those little details, let´s say in cell functions. Then they want to hack or exploit that tiny detail without having any good knowledge of the disease in general. In other words they apply trial and error approach under million dollar costs and without any great results so far. This is just unfortunate. But at the same time science has done tremendous amount of work – during my analysis I had some pretty tough moments, you know, I recognized it is all almost complete work, but it needs to be consolidated. All the pieces are scattered across many works and not put together. I tried to help here. Someone is Terminator, someone is Consolidator 🤔

Well I see your point but you are quite critical without real evidence. I have no doubt world is trying hard to fight this disease.

Yes I´m critical. In ALS problematics word like “evidence” is really premature. Nobody has definite answers yet. I´m an engineer and I naturally try to trace the problem and form some hypothesis how the disease mechanics can work. In other words I try to put together an experimental architecture of the whole disease – and despite I have no medical or scientifical background I created such architecture – just by studying work of others. This means I´m operating on higher level, while researchers are somewhere low, very deep in cells and molecules relationships. Also my life experience with my mother gave me great insights, and then even my own problems provided me additional traces. Did you realize I´m actually endangered as a son of a mother who developed ALS?

I see. I hope you will be fine. You said you felt all those signature ALS symptoms during your extreme treatment program right?

Yes, I was really scared. Muscle twitches, stiffed muscles, pain in nerves, heavy hands, strange blisters I never had before in my whole life. This is just another sign for me, because I share this with my mother and my mother developed ALS.

I noticed your theory is to big extent compatible with scientifical findings but you are mentioning the root cause is microbial, right?

That´s right and this is the biggest reason why I´m critical with current science or ALS research as they ignore these factors and think they just play some partial role in the past, way before the disease gets developed. This means they state repeated infections as risk factors but then infections miraculosly disappeared from infection prone person and just some genetic or brain cell issues remained? Don´t tell me you can believe in such irrational conclusion. Moreover if chronic inflammation is clearly present.

So you are saying the medicine ignores to great extent role of bacteria and viruses?

Exactly.

But that is not possible. They would need to know about them. How can you be sure such infections are still present and devastate the ill person in hidden fashion while research works on some drugs promoting certain gene function etc.?

Great question! Of course they know about them but there is this insidious property. These infections are quite common among people. We talk about herpetic virus family consisting mainly of Epstein-Barr virus (HHV-4), cytomegalovirus (HHV-5) or the shingles virus which is Varicella Zoster Virus (HHV-3) and the rest HSV-1, HSV-2, HHV-6x, HHV-7. Then we talk about Borrelia spirochetes (possibly other strain; not that important) which are also very common among people. The presence of them is confirmed by presence of corresponding antibodies. So science knows. Everyone can follow my posts on this site and read about Mattman work. She states every ALS patient had spirochetes in unusual levels in cerebro spinal fluid (CSF), which means their brain was infected with a known pathogen for which it is known it rarely causes serious damage in CNS. The same is true with those viruses. For example in multiple sclerosis, which in heavy form has also life threatening potential, science knows 100% of all the patients have EBV antibodies and people who suffered with infectious mononucleosis (glandular fever) in past have approx 230% higher probability to develop multiple sclerosis later in life. Please don´t get frightened with the percentage – the base is still small so even if you multiply by factor of 2.3 it does not mean everybody with mono will get MS. To close this EBV and other herpes virus antibodies are again reliably confirmed in ALS patients. Science repeats over and over it probably plays some role and then they rather spend millions on something else.

Oh shit! How is this possible? Why would they ignore that?

Well, let´s say they don´t ignore that but they significantly neglect that. And why? It is that fact that they are finding the same set of antibodies in healthy persons as well. When I realized this, mainly in case of incurable multiple sclerosis I got really upset. As an engineer I was like: “WTF! Are they serious?”. Let me explain this. How would you attempt to treat a disease which is considered incurable but for which a following is known. Every single ill person has EBV virus in their body. Can you think about it?

That´s easy right? I´m just thinking about some catch but it seems we should try to eliminate the EBV virus from all those patients and see what difference it makes or not?

Yeah! You are a bright person for sure! However there is a problem. One is that there is no real cure or vaccine for EBV. Second problem is that while multiple sclerosis is considered incurable, all those treatment/slow-down methods are aimed at something else, but not against the virus. It actually is even worse as MS is considered a classic autoimmune disease and it is actually “treated” in a way that immune system which you would need to reinforce to fight EBV virus is actually suppressed with immunosuppresive medicaments. Going back to ALS, it means all these viruses and bacteria are known but since their possibly real and extremely dangerous role is not recognized they are not targeted in treatments. They are just not considered a big factor. Instead science is drilling more and more into some cell internal processes which can be impaired by the outer, by virus and bacteria polluted environment. In COVID pandemy age we can set a great analogy on this. The new and already mutating coronavirus is big threat, you watch the news, right? Now suppose medical science would say that coronavirus is not an issue in bilateral pneumonia because there are milions of people which are completelly asymptomatic – they don´t get ill but they spread the virus and some weaker person gets infected and soon the virus practically destroys the person lungs. It is actually the immune system and its reaction on virus presence which does the main damage but you got it right? Compare it with EBV, imagine how it could mutate in last 60 years if it is so common among people all over the world.

This looks to me like a conspiration theory. But wait, how is it possible there is no vaccine for EBV? It was described in 1960s right? We see how COVID-19 vaccine is delivered within a year, so why don´t we have a vaccine against EBV after 60 years?

Well, I don´t know. It probably is complicated virus but I think something smells here as well. It can also be the case there is not enough interest in investing in vaccines against virus which is so common among people and considered not fatal like other viruses. The posible role in affecting immunity and the environment is being overlooked. But 100% of people with MS have EBV, don´t forget this.

This is really strange and I will try to find more details. However you mentioned also bacteria – these should be eliminated with antibiotics as usually right?

Yes, usually. However growing bacterial resistance is bigger and bigger problem in our world. You can ask some people with Lyme disease how they feel after long ATB protocols. But science, not ALS researchers, has certain explanation here as well. There is a long time known phenomenon called bacterial pleomorphism. It means some bacterium is actually capable of switching to different forms. Not just the one “small bug” like form which has a cell wall. There is another form called L-form or spheroplast or cystic form which is much much smaller – it can pass filters usually used for viruses. This multi-form ability enables bacteria to survive many attacks of our immune system and guess what – ATBs are designed to target the cell wall form only. I can only add these cystic forms are confirmed to be present in brain of ALS patients. But you probably suspect what the ALS research reaction is.

Holy fuck! Are you fucking kidding me? Ooops, I apologize. Anyway it is really getting me confused and I´m not sure if I can trust this information.

Yes, I also cannot be sure. Anyway it is what I found and I cited all the works on this website. The problem is this phenomenon is totally overlooked as well. Besides that I found the consequences of presence of these neglected pathogens could be to certain extent possibly contributing to the cell behavior which ALS researchers are so familiar with – strangely behaving astrocytes, neurotoxicity and neuron death. It could be an option this bacteria contributes to creating such conditions in which all the bad stuff is happening.

Well I have to say I´m hardly finding words now. To be honest, I was very sceptical at the beginning but now I see this actually can have some relevance or you are just a good liar – I don´t know.

Thanks. I´m not a liar. I could have only made some mistake. That´s fair to point out.

Does that mean, if those pathogens are still there and play some role, that it is almost impossible to come up with a drug which will resolve this disease?

That is a valid deduction. What else can I say.

Now I realized something. I know there is some very recent and latest promising news from ALS research about some drug. It is stated it should prolong life by several months. What is your opinion on this?

I´m always having strange feelings when I read about such “miraculous drugs”. After years and millions or billions spent we have a drug which prolongs life by 6 or 8 months. Is that all? I´m just wondering if these researchers ever saw ALS patient in advanced stage of the disease. This is what I meant at the beginning – I have ambitions to heal people or help them to recover, not to let them suffer for few months more and call it a treatment success. By the way my mother also had some drug with such “great potential” – it did not help at all. I have some basic statistics knowledge and I think I could even challenge these 6 or 8 months of life easily. Every person is unique and in this case it is irreproducible measurement from obvious reasons (patient death) so from my point it is just useless and huge ethical fail for a huge cost.

I understand. Well it is all little bit scary. So pathogens play role, anything else? How would you actually summarize ALS?

I thought I did this in my Verdict post but OK, I can try again and little bit differently. ALS is just an acronyme, a shortcut for a complex state created in patient body. Multiple and most likely independent factors simultaneously harm the body. We already mentioned infections, both viral and bacterial and also highlighted the insidious property – they are common! Then there are heavy metals which in higher levels intoxicate the system as well. Now let´s add some predisposition to the mix. This already looks very dangerous, right? Just imagine what all immune system takes care of and now I just mentioned at least three but most likely five or even more enemies. What can be the result? A damage. Your organs don´t have time for repair cycles, they can be infected (liver, spleen, thyroid, adrenals) and in case of glands their endocrine function is impaired which just must have bad consequences. Since the infections are most likely chronic the immune system can be already heavilly weakened or exhausted after years of fighting. Perhaps just very specific parts of it – and specific immunodeficiency is born. It is like Napoleon Bonaparte facing multiple enemies in the Battle of Waterloo (check the sides, army strength). It is clear such complex chronic state needs to be fought in certain smart way. The syndrome should be tackled in a sort of divide and conquer fashion. Each factor, each component should be targeted and ideally eliminated so the disease is basically very slowly disassembled. Perhaps science is capable to deal with those factors individually, if it respected them though – if there is a person who is suspected to have unhealthy levels of heavy metals, then I would expect medicine can do something about it with its 21st century technology. If not we have plan B and natural detoxication. Same with bacteria or viruses. As these processes progress the whole environment is getting better, cleaner, some areas are liberated and made infection free which presents a relief to immunity in the long term (disabling chronicity). Did you ever read about such descritpion in the context of ALS?

Well, no. I always heard or read it is hereditary disease or it has some sporadic form which nobody knows how it gets developed and malformed genes are the reason.

I´m not surprised. But which description you like more? Ok, it is not about this, but the alternative experimental theory has something appealing inside, right?

It is definitely more informative, the question is how correct it is.

Of course, that is why I wanted it to be reviewed – no luck so far. Worst case it is somehow questioned, but instead the research is not interested at all. One researcher stopped responding without any feedback. I told you, something smells here.

This is unfortunate, don´t we have something more positive? Do your findings promise a better outlook? How do you think people should tackle this problem?

Yes I also hope we have just closed the bad part of this interview. The high-level approach I already indicated. It would be nice if the interest in viruses and bacteria in a context of ALS recieved a new attention. For patients this alternative theory could provide more meaningful explanation of why they suffer. It is just much easier to realize silent and creepy infections got out of the control of immunity in their bodies, while at someone else body they are kept far from causing such terrible states (again COVID analogy should help!). Compare this with nothing explaining genetic disorder or immunity went wrong official alternatives. Additional positive thing is realizing the almost infinite healing potential of our body. If many people can somehow keep these pathogens under control, then my body could do as well, perhaps with help here or there and after some time, but finally an improvement should come. A famous “YES WE CAN (TOO)” slogan fits here. It does not matter if people believe in God or in evolution/nature or karma principle, cosmic laws – all of them can realize that God or Mother Nature hasn´t abandoned them. Instead it equiped them with everything needed – it has always been part of them. However it is in very poor condition at the moment and it just needs to be reactivated and reinforced. It is their miraculous immune system. I´m studying it little bit and I´m trully impressed with the overall design and its robustness. There is definitely room for doing some small smart changes and the whole system can dramatically improve due to the great architecture.

Nice, but wait – aren´t you trying to say disease like ALS can be somehow stopped just by believing in our immunity, right?

Of course not. This is not a theology lesson. The belief is very important, even doctors know person who believes in improvement has much higher chances than that which doesn´t. The big topic in many such diseases is various immunodeficiencies. This means that the ill person had some natural predisposition which made him/her more prone to certain problem but then the way of life and most likely neglecting of some warning signals lead to disease development. The predisposition could be just something like an initial piece of configuration of a very complex software system, a higher parameter value saying something not good can happen sooner. However it does not say anything about the absence of solutions. Problems in complement proteins which are part of innate immunity are often considered a bad luck and that´s it. But I found out from more angles the liver is the gland which produces these critically important complement proteins. So what? Try to help your liver as much as you can, perhaps it will then reward you with C3, C5, C6, C7, C8, C9 and others so effective MAC cascade effects can be reformed and start wiping out those uninvited pathogenic guests (if so expect temporary discomfort!). Similarly science comments other deficiencies – a lack of certain type of lymphocytes. In my opinion this is a real conflict with all the statements around risk factors, life style, habbits etc. Isn´t it a bad habit or diet which can contribute to such immune disbalance? And by the way it is not just my opinion, progressive scientifical studies reveal that the human microbiom is actually playing role in immune processes. Problems in intestine and the microclima there can cause disbalance in immune cells produced – there are case studies like this already! Also if you are weak and cannot get let´s say chronic EBV infection under control, it means some immune cells will be very low. Why not to try to get stronger in the most fundamental way? In ALS it was found people have low ability to regenerate immune cells, and that some cells like Treg lymphocytes are found in higher amounts than expected. So solutions can exist and most likely exist.

Well I read your site so I know you put big importance on food or super-food combinations, herbal teas and also minerals and vitamins, enzymes like super oxid dismutase, glutathion etc. Is that a key factor to beat chronic state in general?

It can be and most likely is in case of other less serious chronic diseases. Question is how key it can be with ALS. Just look at the pictures of my forarms – I never had anything like that before. One day I decided to make a rapid change to my life and applied all you mentioned in a very accelerated way. How did my body reacted? Thyroid swelled up. First batch of strange blisters. Pain. Sleepiness. Beeping in ear. Leg nerves in pain. Second batch of blisters – much bigger now. Sudden sharp lower back pain. Then longer pause and just mild issues. Sudden knee problem – micro inflammation. It is like the force ratio between my immunity and some infections, often deeply encapsulated greatly changed to my benefit. What if I had some immunodeficiency? I cannot tell now. I believe I just addressed lot of problems. I tried to give the body everything and it rewarded me in the way it started fighting like never before and it won practically all the battles. Now I´m fine but still – I don´t think this process is finished. I feel very good though. Sometimes people really get used to living with many issues – they just accept it. I fight it. This is my message.

This all is good to know. But ALS is ALS. You cannot beat it with oranges and blueberries. If it was possible someone would need to succeed in past, don´t you think?

This is interesting problem. I cannot be sure actually. You probably know the theory about early stages of any chronic disease which I mentioned in my first posts right? That´s why I believe many people recovered from preALS states – they never faced deadly diagnosis. It is a huge factor and huge help. Just think about it and imagine you suffer with strange issues which look like serious neurological problem – perhaps it is GBS but you are told it is ALS. Do you think it wouldn´t affect you? Your mentality. The difference between It will require few months recovery vs I´m sorry it is fatal is extreme, moreover if you believe in these medical authorities and you don´t believe in something bigger, higher. Who hasn´t faced that cannot judge but can at least try to imagine it. So what is important is in which stage you start fighting and how healthy is your mentality. I wish health to everyone, I wish even bedridden patients could walk again. It is not just oranges and berries, it is much much more and it is actually really targeted treatment. I was often surprised how the “healing factor” of simple food was correct. For example I was taking L-Lysine amino acid for some time already and after several weeks I googled those benefits – it said, it is recommended to support immunity in case of herpetic infections. In other words that weird guy, Anthony William, was right! The same with berries, spirulina, chaga, herbs like lemon balm or turmeric – I verified one by one and it was there. I trusted this guy from different reason but then I verified. Small things to small things and let´s see. It is an experiment.

Well perhaps someone in great shape but with very fresh ALS diagnosis could apply all of this in thorough fashion and as you are saying – who knows.

Exactly. I hope you remember the Lou Gehrig story I also described. This athlete had ALS and he did not know about it initially – still he most likely played a whole season in MLB. He was very strong. Who knows how such person would react to protocol I´m mentioning here or Anthony William or many others in slightly different versions – I see it everywhere now. The ALS is diagnosed among military personel, so often people in great shape, famous US Marines etc. There is 30,000 of people with ALS just in United States. These guys should know about such experimental theory – it is just information. Please compare it with present – the patients are not treated at all, they are just left to their destiny. Only financial support, those mobility supporting tools or devices etc. This means that no matter how weird this may look one can apply it – there is a room for it. It is not a replacement of some other official treatment which would obviously put patients in doubts and risk. It is a non-invasive and cheap as well, you can compare it with single stem cell therapy price. Of course it would be great if science came with something more concentrated and targeted cure, but we already talked about their preferences right?

I need to say I agree. So how does this website do? Can you measure the attendance somehow? Or can you share it with some research groups, make them take a look?

It is still very new website so there is practically zero traffic, nobody is sharing links to it yet. So far just 100+ visits from several countries but most visists are from US which is good. I have several ideas how I can improve that without spamming or big investments. I live my dream, that this website can help someone to better understand ALS and direct him onto a different path, a path towards a personal miracle.

Perhaps this interview will help a bit. Is there something else you are working on, or what else can reader expect?

I have some work in progress – I´m still studying autoimmune behavior because I see a big potential there. Besides that I would like to share my experience and opinions on other more common diseases or health issues. ALS threatens people and to be far – it is not a topic for many. They leave it to research labs and trust them they are working hard on new treatments. For example I made one experiment and kind of spammed around seven ALS organizations or research groups on Facebook. Everything was ignored as I expected. However I noticed one person who “spammed” these pages as well with comments with information on possible treatment. That person actually did something similar and mentioned herpetic viruses as well and gave some description and contact to some doctor. Of course it looked very untrustworthy, some crazy spammer. I see things always from alternative angle as well so who knows? I was thinking about it – perhaps there are already people who experienced an improvement, they realized one can actually do something about the disease but they are ignored. On a similar note I remember an older comment on some website – a woman was stating her husband was told ALS diagnosis and they found some african “healer” who prescribed some herbs and the state got better. So you never know, we live in age of fake and lies, we as mankind lie and cheat and as a result we already are unable to recognize valid information from spam, fake news. Purely hypothethically, have you ever thought what you would do if you recovered from ALS using some alternative method? Medicine would deny that, they would tell you the diagnosis was wrong, because obviously ALS is fatal. What you would do about it?

I need to say I have never thought about it. But I see your point. Nobody would trust me and perhaps the knowledge and lack of trust, the despair of all other suffering people, this could harm me. Perhaps I would go mad or just give up.

Yes, these are valid thoughts. I´m not in this position but as I wrote my experience and findings are somewhat similar. That´s why I have created this website. It will work in 24/7 mode so I won´t go mad. People who don´t look only at first two or three pages of search results can find it and read my story, get more information about ALS and hopefully find more encouraging and little bit more optimistic outlook. I grew up in atheistic environment and I have never been a fan of weird esotherics and all these things but the story of Edgar Cayce really impressed me and I especially like his message. It is so true. We just don´t have the whole picture yet.

Yes, that´s great achievement. If nothing else, just another contribution to real mystery. Thank you for your time.

Yeah, what an interview man! Thanks and if you can help me with sharing this information … Damn, I forgot you are me, so you cannot help more. So perhaps a reader can help.

“Blind belief in authorities is the greatest enemy of truth.”

— Albert Einstein

Time for ALS patients runs fast. For more than 100 years science from strange reasons hasn´t found any cure so far. I say time has come to regroup and review what and how these research guys are actually doing.
ALS Experimental Theory is alternative explaning the disease but explaining even this great scientifical failure to deliver results.
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Trace #7 – Fuzzy Disease Scope

This aspect of ALS disease is very important and it could actually indicate also other primary trigger than infection. Anyway we know ALS patients definitely are not pathogens free - it is rather the opposite. The insidious character of the hard to recognize silent progression presents a big trap which is kind of "supported" even by the medical system.

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