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.
Why this is extremely important? Because it is relevant to early detection and in my daring opinion also prevention possibilities in ALS disease. Yes you read well – PREVENTION! In ALS world non-existing term due to the minimal understanding of the syndrome and creating drugs with unknown mechanics (riluzole).
The exact mechanism by which Rilutek treats ALS is unknown. However, it is thought that the medicine blocks the release of glutamate from nerve cells. [https://alsnewstoday.com/approved-treatments-for-als/]
Here I should mention again Anthony William controversial multi-stage viral theory – in my opinion the role of pathogens can be little bit different (see Stealth Enemy post) but it is not the most important thing here. It is the mutli-stage nature which everyone should be aware of. Despite this person is heavilly criticized, scientific findings (in)directly support such theory because science registers repeated infections as a risk factor – but is that really just a risk factor? It can be actually the primary factor – those infections can be the problem which is never solved and instead is switched to background where it silently evolves.
When science recognizes ALS diagnosis it can be already very late stage – so apparent and so urgent that even today weak diagnostics already confirms something is wrong. ALS, these three letters can represent very late stage of that stealth infection – that is the theory and hypothesis. However when I started studying stories of ALS patients I clearly noticed a common sign – all noticed and felt something is not right with them long time before they recieved the diagnosis (months long period!). These feelings and symptoms again support typical infection like progress – fatigue, weakness, pains, stiffed or heavy limbs. This is why many people suspect Lyme disease which is very similar in terms of symptoms and it is not a wrong guess at all.
However the big problem is that the medical system is not really helpful during this period. Physicians neglect the symptoms and since they apply unsophisticated old-school methods consisting of gradual elimination of less severe diseases (including infections!) they are loosing the most precious factor – time! Suppose that in this period there is still time to do something and immediatelly order generic anti-viral or anti-bacterial treatment consisting of absolute resting, supporting immunity and giving it every single aid science is aware of (top class diet!) but patient won´t get it. Instead doctors are afraid and leave the worst possible outcome as a last option, they hope it is something else but their acting/waiting is counterproductive. With ALS many things need to be done differently than the system is used to. They will prescribe some ATB protocols which will not work on the infection – first the problem has most likely its viral component so ATBs are useless and second there is most likely an advanced bacterial infection. You may think ATBs is a great choice then but I need to warn here. Based on my research there is a great probability this bacterial infection is L-form type infection. This means the pathogens got rid of its cell wall and that is why they are called cell wall deficient forms. Unfortunately ATBs target cell wall and thus they are useless too. What can follow?
The patient can be already anxious as the sloppy treatment prescribed does not work and weeks and months are running away. The time bomb is ticking – under these circumstances situation can often get only worse. ATBs also further affect liver condition which is considered factor as well and can promote more pathogenic/unhealthy microbiom versions.
Another very unfortunate thing about this can be the insidious and unpredictable evolution. Sometimes people may not feel anything extra serious and they can continue with stressing their already weakened body with demanding physical activity, sport activity, running which is not really casual jogging, lifting weights etc. Just imagine you have COVID since you lost taste and smell in 2020 but you think it is nothing and you continue with running 10KM every day in the morning and you are trying to improve your personal records! Most people later diagnosed with ALS probably had ongoing hidden inflammation – but more or less under control. Stressing the organism kind of inhibits immunity so the inflammation can get out of control, mainly if there are other factors like growing deficiencies, lack of resting and sleeping.
Similarly you can consider following fictional analogy – medical system is unable to detect COVID coronavirus infection so you get through the initial fatigue, lost smell and taste and then high temperature phases into acute phase – bilateral pneumonia. Now the medical system does a scan of your lungs and states: “Man, you have serious bilateral pneumonia, we can see that on X rays image of your lungs, it is extremely dangerous, you have 50:50 chance to survive, we need emergent care bed for you”. This can be the case with ALS with two unpleasant differences – instead of X rays they would talk about EMG examination and instead of 50:50 chance you will be given death sentencing 100% fatal diagnosis, in other words ZERO chance to fight (which patient should always reject but it is damn hard!).
That stealth infection in CNS I am suspecting here can be very hardly noticeable and people will rarely consider it a problem as many of ALS patients got used to neglect health issues and their vigilance and sensitivity to own body signals is affected – please don´t get me wrong here but this is my impression formed based on reading people stories. Lou Gehrig is the most famous and extreme case but I identified traces of this behavior even for regular people. It is not critics at all. It is just another trace in the hunt on ALS mystery. The bottom line is that the real problem practically always spans years, evovles slowly in the “background” but the transition to the worst phase, ALS phase can seem sudden and quick. Someone would just say: “I was fine and then injured something and suddenly I got ALS“. I had chance to see this phase in kind of slow motion (mother case) and I can recognize the fine or very subtle patterns in other cases, people stories.
Science should really change their methods as they are eliminating gradually the other diagnoses but not treating the cause – the problem is going on and the final outcome is heavily dependent on the afflicted person life attitude. Unfortunately blindly following those medical symptom targeting attempts can result in a disaster. I tried to explain this double edge sword problem in Grey Zone post.
Please always remember this golden advice. If you feel something is not right, then never underestimate it. Always try to rapidly improve every health aspect – heavily regulate stress, rapidly improve diet, focus on resting and quality sleep, give up smoking if applicable, regulate alcohol, refined sugar, coffee, salt. And be prepared to loose something and to carry costs for this – money, opportunity, job related things, whatever. Make sure health goes first is not a phrase in your case. If you learn to care about yourself you will never loose too much at the end.
I don´t want to frighten people here at all – instead I try to only warn them and teach them how to fight those unplesant symptoms which one never knows how it will evolve:
- Chronic Fatigue Syndrome
- Post Traumatic Syndrome Disorder
- Lyme disease aka Boreliosis (including recurring form or forms where no tick/insect bite is known)
- Problems with thyorid
- Strange hypertension (no obvious reason from bad lifestyle category)
All above medical diagnoses have significant symptom overlap (fatigue, needles & pins feelings in legs neck pain, frozen or stiffed shoulder(s), muscle pain etc.), and that is the reason why your doctor can be hesitating or misdiagnosing and you are loosing time, even months! Please remember this and consider or even pretend (if you think it helps) you are under attack of various pathogens and the very best thing you can do is to follow above stated advice with a true diligence. I found those Anthony William books very valuable regarding this – me as well as you may not agree with all the explanations, it sounds crazy, but in fact, the treatment and advices consisting of reinforcing natural diet and then some core supplements really works. My experience with such protocols evolved into something I described in ALS 1KD CHALLENGE. The best thing about this simple but powerful self-treatment is that it is not invasive – it can complement practically any conventional treatment. The only warning is regarding the potential medication and supplements taken clash which I always highlight – immunosuprresives Vs immune boosters, hypertension drugs etc. These things can be fine-tuned on individual basis and consulted with experts.
“ALS may not be a real disease as we are used to think about them. Instead it can be the last/advanced and acute phase of stealth infection which is spreading silently in the organism for years as a result of unique and during life obtained immune system deficits. Humans are missing the beginning, they are unable to see the danger soon enough due to their error-prone disease framework and wrongly ordered priorities and wrong methodology. This can lead to a period during which gradual elimination of diagnoses, after some (wasted) time, ends with the most brutal and terrible one. An unfortunate result of symptom targeting/suppressing paradigm which does not have the desirable and necessary generic organism reinforcement effects which could revert any progressing pathogenic processes, regardless they are known/visible to humans or they are stealth/invisible but highly suspected based on indirect evidence.”
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