ALS News Today Forums Forums ALS Progress Research Topics Why is there almost no research on neurotoxins as a possible cause?

  • Why is there almost no research on neurotoxins as a possible cause?

    Posted by doug-frazier on October 5, 2023 at 2:39 pm

    Right after being diagnosed, I read about the famous ALS clusters from decades ago. All of these ended up being caused by natural neurotoxins.

    Some quick searches showed there are 200 known and another 800 suspected neurotoxins.

    I asked my doctor about what studies on these have shown since and he said there hasn’t been much.

    My own look at clinical trials confirmed this.

    The Occam’s Razor principle suggests that we should focus on the simplest possible solutions first.

    ALS is the result of damaged neurons.

    There are 200 – 1,000 neurotoxins which damage similar structures.

    ALS is either a disease that has escaped the best minds in the world via some new yet be discovered method or it could be that it isn’t a disease at all.

    Could it possibly be a public health crisis instead, like lead poisoning? What if a drug or gene therapy will have nothing to do with the cure but a global public health initiative like we had for lead or freon will?

    What if a tiny dose over decades could lead to late onset ALS while a large dose could cause it at any age?

    Enough conjecture on my part.

    I, like most of you, get tired of these supposed great breakthroughs that only end up possibly getting us a few more months of life or a new test that can tell us we have ALS sooner.

    I want to see them trying for cures.

    Does anyone know why neurotoxins are not focused on more in ALS research?

    I imagine I am just missing something so I had to ask.

    Thanks

    Doug

    doug-frazier replied 4 months, 2 weeks ago 16 Members · 57 Replies
  • 57 Replies
  • Dagmar

    Member
    October 6, 2023 at 4:18 pm

    I don’t know why this isn’t being researched. I agree with your argument.

  • Amanda

    Member
    October 9, 2023 at 7:36 am

    Doug,

    Your post is well thought out! My personal belief as I’ve stated before, is that there are different kinds/causes of ALS. There have been a few articles over the years discussing possible neurotoxins; but not enough research. Your post is thought provoking and I am looking forward to other’s response. Also, has anyone else asked their medical professionals? I will ask at my next appointment.

    Amanda

    • Susie

      Member
      October 12, 2023 at 5:32 pm

      I worked in a Pathology Lab for close to 40 years. Lots of chemical exposure! Especially xylene, which is a known neurotoxin. I also lived on a farm with two ponds for over 20 years… again a lot of chemical exposure. Copper, pesticides, etc.

      Maybe it’s a culmination of exposure? How does this explain children and teens getting ALS, though?

  • doug-frazier

    Member
    October 9, 2023 at 1:44 pm

    I asked my Neurologist at my ALS clinic since it had been a couple years.

    I attached the response below.

    The points that support this argument a little are:

    1. ALS showing up more in industrial areas and the Midwest (farming and industrial?)

    2. Link to smoking (duke.edu has information on nicotine and tobacco showing neurotoxic effects, https://scholars.duke.edu/publication/1529691#:~:text=Nicotine%20exposure%20causes%20well%20characterized,or%20environmental%20tobacco%20smoke%20exposure.)

    3. Admits not much has looked at neurotoxins but they haven’t happened upon any evidence either.

    This was a thorough answer but leaves open the question of why hasn’t anyone studied substances that are almost guaranteed to negatively affect neurons.

    Doug

    Here is his response.

    “There are no clusters proven beyond doubt linked to a clear exposure. We have many that we suspect, but this continues to be a challenge and not one where there is general agreement beyond that that neurotoxin are neurotoxic and that many of present in our environment. Today we see genetic causes for about 15% and we can imagine up to 60% of ALS being genetically determined based on our most aggressive mathematical modeling, that leaves at least 40% for the environment. The Agency for Toxic Substances and Disease Registry (ATSDR) is in charge of the search in the U.S. and try to see patterns using the national ALS registry. So far little emerges. There is more ALS in the Midwest and industrial areas, but clear clusters are debatable.

    Smoking has been the most clearly implicated exposure, but the evidence linking ALS to smoking is not strengthening, it is weakening.

    I presume that you have registered with the National ALS registry and done your part in regards to looking for environmental causes?

    From time to time we query the samples that we have for different metabolites and while I would not say that we have done much in the direction of the neuro toxins we have not seen any. We have seen some unusual viral components but I think that is about as far as it goes in regards to exposures.”

    • Steve

      Member
      November 16, 2023 at 4:06 pm

      Doug,

      Why spend the research money looking for a cure, when people with ALS will spend thousands of dollars a month on an experimental research drug that might prolong your life. I have had ALS I believe since 2017, and the only thing that works is Riluzole. I to believe that it’s neurotoxins that caused my ALS as I worked in areas where I was exposed to Uranium in the late 70’s and early 80’s.

      However, if you point fingers at large corporations or the government they are really good at avoiding these issues. I believe that ALS, most cancers, and other diseases are caused by neurotoxins.

      Thanks,

      Steve

      • doug-frazier

        Member
        November 27, 2023 at 11:21 am

        I just realized I didn’t reply to this.

        I agree completely except that I might say toxins in place of just neurotoxins.

        There are so many toxins and combinations that could be harmful.

  • Lisa Brown

    Member
    October 10, 2023 at 7:23 pm

    I have tested off the scale with Glyphosate. This is known neurotoxin. And yes it is probably a buildup over many years. Combined with bad diet and physical combined emotional stress in recent years before diagnosis BANG left foot drop ALS diagnosis.

    • Alexi

      Member
      October 10, 2023 at 11:09 pm

      Oh dear! Are you a gardener? That is scary. How did you get tested for it? Was there a specific symptom that warranted it?

      • Lisa Brown

        Member
        October 11, 2023 at 8:52 pm

        I grew up in the country and exposed to weed killers and insecticides all my life. Glyphosate is in potatoes and other mass produced vegetables. It is used as a drying agent especially on grain crops. There is plenty of info on YouTube. I live in New Zealand. It has taken 4.5years to find someone to do the testing for root causes. 4 years to b in a wheelchair, speech going, arms on their way. I found a ‘functional’ doctor who arranged the tests – all of which were performed in the USA. They found other problems with gut flora and deficiancies which I am addressing. My research for a magic cure has been fruitless. However, there is a way forward and it starts with gut health. Most of us have a leaky gut and in my experience, if your not farting you’ve got a problem.

        Tests include: tick borne diseases-borrellia, gut health, GI health, viruses eg HSV,CMV, pathogens.

        Find a Root Cause doctor.

    • doug-frazier

      Member
      October 11, 2023 at 1:18 pm

      That is indeed a good example.

      Like Alexi, I’m curious what led you to be tested. Was this a known issue in your area? Did your doctor suggest this test? When I asked my doctors they said they did not test for toxins at all.

      • Lisa Brown

        Member
        October 12, 2023 at 5:09 pm

        Why did I test for toxins? I have always been fit and healthy and suspected nothing but intuition said somethings in me. Yes, viruses too. My research has led me to a list of tests that should be performed on all pALS:

        1. Tick Borne diseases especially Borrelia and other parasites

        2. Moulds

        3. Pathogens

        4. Enderovirus

        5. Enterovirus

        6. Toxins

        7. GI Health. (Leaky gut)

        I knew I had toxin exposure with my sign making vocation and weed killer from a teenager (245T)

        If you want tests find a ‘functional medicine’ doctor. FXMED do the tests.

  • Alexi

    Member
    October 10, 2023 at 11:08 pm

    Hi Doug,

    I could see how it would be a challenge to get study participants who were exposed to a specific neurotoxin and a control group who were not.

    You write very clearly, but I had difficulty understanding this paragraph:

    “ALS is either a disease that has escaped the best minds in the world via some new yet be discovered method or it could be that it isn’t a disease at all.”

    Can you rephrase, please?

    Alexi

    • doug-frazier

      Member
      October 11, 2023 at 1:07 pm

      Alexi:

      You asked me to clarify what I mean’t by the phrase “ALS is either a disease that has escaped the best minds in the world via some new yet be discovered method or it could be that it isn’t a disease at all.”

      I want to thank you for asking, it made me realize how much of the background information I left out. Therefore, I put everything in order in this post so that it would make sense. There is some redundancy with the last post but I thought it made sense to do it completely this time in one place so a reader doesn’t have to go back and forth.

      The world is treating ALS as if it is a disease.

      If we assume it is a disease, since we still know almost nothing about it, this must mean that it is so complex and a brand new method of action that the best scientific minds in the world could make absolutely no progress on it for fifty to a hundred years. The experts still stay they don’t know what causes it.

      When solving problems, if we continue to make no progress, we need to question all our assumptions and approaches to be sure we aren’t pursuing the wrong path.

      One useful method for sparking ideas is to turn the problem upside down.

      So instead of trying to cure the disease ALS, what if we asked all our top scientists what is the fastest way to give someone ALS-like symptoms?

      Luckily, we have a lot of existing data on this problem.

      When I began looking at the various studies in the toxicology journals, there were many studies on the famous Western Pacific clusters but also on others. The general summary of all these is that residents were either eating a fruit that contained a neurotoxin or were exposed to a neurotoxin that was naturally occurring in some nearby fresh water, etc. So, these were poisonings, like we have lead poisonings today.

      Also, when they removed the neurotoxin exposure, future generations had no ongoing negative effects, as we would expect with a poisoning.

      These all yielded ALS-like symptoms but not exactly ALS. My neurologist says the ALS research world dismisses these somewhat because they are not exactly ALS so it isn’t proof for ALS which is true of course. But, these residents were devastated by these poisonings in a very similar way to the way we are, even if they weren’t exactly ALS.

      So, to answer the question about the fastest way to give someone ALS-like symptoms, it would appear that the fastest way would be to get these few naturally occurring neurotoxins that are proven to produce them.

      Additionally, the toxicology experts also say there are 200 known neurotoxins with another 800 possible. Many of these are dispersed widely throughout our environment.

      Now imagine a normal 70 -80 year human lifespan. Let’s say one was exposed to varying amounts of 20 of these 200 neurotoxins over a lifetime, some larger doses, some smaller, some more frequently, etc.

      It would seem that a likely outcome would be that late in life, enough damage would accumulate that that symptoms would appear.

      As we all know, there are many “diseases” that look like this: Alzheimer’s, Parkinson’s, Dementia, ALS and the family of motor neuron diseases, and many others.

      What if all of these are simply poisonings from varying numbers of the 200 neurotoxins at varying doses, over varying lengths of time?

      What if a large exposure at an early age produced symptoms at a young age? If it is poisoning, symptoms could occur at any age.

      What if a smaller exposure lead to a much slower evolving symptoms (like slow ALS cases)?

      What if all family members were exposed to the same neurotoxins because they live together and do the same things? In the Western Pacific clusters, sometimes whole families were affected but sometimes members were spared. It turned out that these members didn’t like the fruit. What looked a genetic cause was just exposure to the same thing. Could this explain our low rate of genetic cases in ALS?

      It seems like the poisoning theory could explain almost every aspect of ALS but, of course, I am a layman.

      What I was hoping to find out with my original post was if anyone else knew of scientists that had fully exercised this idea because my assumption is that I am just missing out on seeing it. There were many studies on this topic in the early to mid 2000s but they stopped after that. I assume this is because scientists figured out something and moved on to other topics.

      Alexi, this explains what was behind my statement. Sorry for the length.

      Doug

  • Alexi

    Member
    October 16, 2023 at 3:01 am

    Thanks for explaining. That could account for sporadic cases. I am in the familial group, so not sure that would apply to us. Also, even if the cause might be neurotoxins, it is still producing a disease. But I get your distinction.

    • doug-frazier

      Member
      October 17, 2023 at 7:18 am

      In the journal Nature, the following quote appears: “A key factor, which almost certainly affects the range of susceptibility to lead poisoning, is a child’s genetic makeup. Current models for the neurotoxic effects of lead implicate the enzyme arylsulfatase A (ASA) as a particularly significant target of lead in the central nervous system (CNS).<sup style=”background-color: var(–bb-content-background-color); font-family: inherit; color: var(–bb-body-text-color); -webkit-text-size-adjust: 100%;”>7</sup> Reduced levels of cellular ASA by lead has been suggested to augment the other detrimental affects of the metal, resulting in the death or impaired function of oligodendroglia progenitor cells (OPCs) and lead to CNS dysfunction.”

      So, genetics can affect a child’s susceptibility to lead poisoning. But they never conclude anywhere in scientific literature that lead poisoning is a disease.

      So familial ALS could be similar. A family’s genes either hurt or help their resistance to the poison.

      But, to me, it seems that if we found out that ALS was caused by a neurotoxin, we could figure out what effects that our genes hurt or help us later.

      Th important thing is we would begin global efforts to ban these toxins and then work on ways to eliminate these from PALS’s systems if possible.

      I guess the bad news is no one has responded saying they know of studies on this topic which was my hope.

      Thanks

  • Alexi

    Member
    October 18, 2023 at 11:03 pm

    The gene mutations that cause ALS and FTD are not like other genes that may cause a person to be more vulnerable to a disease. They are autosomal dominant genes. You have the variant (mutation), you get the disease (or diseases in the case of c9orf72).

    • doug-frazier

      Member
      October 19, 2023 at 2:13 pm

      Thank you. I didn’t understand that.

  • Alexi

    Member
    October 18, 2023 at 11:06 pm

    Regarding lead poisoning not being called a disease, does that really make any difference? You have the same symptoms regardless of what they call it. You can’t just go by what the medical community deems an illness or not.

    • doug-frazier

      Member
      October 19, 2023 at 3:11 pm

      I agree.

      Again, my only original question was why there were so many studies up to the mid 2000s that all showed definite links between ALS and neurotoxins but now I don’t see any.

      I wasn’t trying to propose some novel idea.

      The name disease or poisoning doesn’t matter to us who have it. It what it is.

      My only qualm with the word disease is what it means for how we try to address it.

      Diseases are something the medical experts try to find a cure for.

      Things like lead poisoning require public health experts which then create global efforts to enact bans as a first step to protect future generations.

      Concurrently, medical experts, instead of looking for cures, would look for ways to eliminate the toxins from current patients and then determine if they can reverse the damage.

      If neurotoxins do play a role, we are wasting time by not trying to ban them and protect future generations from getting ALS or another motor neuron disease and by not even attempting to remove the toxins from current patients.

      Fortunately, there are some experts today looking at why ALS patient’s cerebrospinal fluid is so toxic and exploring filtering it and other methods but we would see efforts like these rise in importance if we knew it was caused by neurotoxins.

      Drug research on lead poisoning was focused on drugs that might help remove lead, not on cures.

      If it was true, think of the hope it might give us. We might all be lined up for blood and CSF filtering or transfusion trials. There might be some hope for improvement in each of us. The end result could sadly end like lead poisoning too where there isn’t much they can do for many.

      But we would have the satisfaction of knowing that future generations are protected.

  • Monica2k2000

    Member
    November 7, 2023 at 3:49 pm

    I found this article today. I am putting a link to it here.

    Environmental pollutants in blood linked to ALS risk, survival odds (alsnewstoday.com)

    • Dagmar

      Member
      November 8, 2023 at 2:51 pm

      This was a good article in ALS News Today, but I wonder… is the information of any help? I often think that these types of research studies that identify a potential cause of ALS (thanks, but I can’t do anything now that I have ALS) and, the potential risk to even surviving ALS (gee, I didn’t need to know that), are not helping to move the ball forward in finding a treatment or cure. Seems like a waste of research dollars.

      What do others think about this?

      • doug-frazier

        Member
        November 9, 2023 at 3:53 pm

        This may be the first time I see it differently than Dagmar!

        To me I see it from the opposite view. I see it as providing hope to even current patients.

        That was a great article and I was glad to see it.

        1. We evolved for millions of years eating only organic foods. But there were deadly organic things too. During this long period, the only toxins were these organic examples. Most would have quick results and our ancestors avoided them. Some didn’t have fast results though.

        2. The great thing about these ALS clusters is that we now know what causes symptoms similar to ALS. The even better thing is the Guam version is called ALS Parkinson’s dementia complex. ALS researchers sometimes point to this as proof that it isn’t ALS. I see it as stronger proof. What do these diseases share? They can’t be figured out. What if something or group of things are causing all of these? This isn’t a hunch of mine, it was in the toxicology studies. The plant cause in the Guam case was an organic toxin. If we wanted to produce ALS symptoms in a healthy patient, feeding them this plant seed would do it in short order. So we know toxins can do it. When I started reading toxicology journals, I was amazed at all the studies supporting this cause, not just based on the Guam case, but lab studies as well.

        3. Now we have introduced thousands of synthetic toxins in every aspect of our society (there are 200 – 1,000 neurotoxins alone) . In the above study, these toxins. were sprayed on our foods and in our neighborhoods to control mosquitoes. But they are everywhere and some of these are known as forever chemicals because they stay in our bodies. Our bodily systems can’t break them down.

        <font face=”inherit”>Now, what we are assuming is that if we expose an organically evolved human to thousands of toxins in varying doses, that no negative reaction will take place?</font>

        4. The cure part. If these toxins are the cause, it means the causes of these diseases are much more complex than we even imagined. Thousands of toxins interacting with thousands of non-toxic chemicals and, our bodily systems, pharmaceuticals, etc. Luckily toxicoligists already know what most of these do in the body individually. They also know the likeliest offenders, meaning we shouldn’t have them in our bodies. We then set about either banning these chemicals or limiting their use.

        Funding would need to be directed to toxicology studies and databases to try to identify the effects of the interactions next and let these results change the amounts allowed in foods or products.

        5. The hope part. While the cause would be complex, there might be easier approaches to helping current patients. We already know ALS patient’s spinal fluid is toxic. There are already studies attempting to filter it (I’ve exchanged emails with Dr. Lad at Duke who is working on this for example). What if we could filter the spinal fluid, blood and maybe throw in a fecal matter transplant for good measure, to basically try to reboot our bodily systems back in the direction of normal by removing these toxins? <font face=”inherit”>What if we needed these on a periodic basis for a while like a dialysis patient? Ok, </font>I’m<font face=”inherit”> </font>getting far afield now.

        But, these, unlike all current options don’t come with many new side effects and results might be visible more quickly. They aren’t without risks of course, every procedure has risks, and determining at what level to filter to pick up each toxin molecule is very complex

        To me, this sounds so much more hopeful. These techniques are all available today.

    • doug-frazier

      Member
      November 9, 2023 at 3:55 pm

      I thought this was a great study too and a great find by ALS News Today.

      Thanks for linking it here.

  • h2os

    Member
    November 10, 2023 at 2:39 pm

    What if it is a combination of both neurotoxins and exposure to heavy metals( understand heavy metals are considered neurotoxins). My wife has Bulbar and both parents smoked most of her early life. She also worked in the medical field for 40+ years. Though what if they are just the trigger not the root cause? My wife also had cellulitis from a wayward shingles shot. Did any of this cause this horrible disease. Will it be something else or even something simple? Speculation is all we have and unless they find a cure tomorrow none of that will help my wife. Hopefully they will find something for the next person.

    • doug-frazier

      Member
      November 14, 2023 at 6:53 pm

      h2os:

      Great points.

      The recent study linked above identified 24 toxins, not just neurotoxins, that affected ALS survival.

      In fact, I should have just titled my post “toxins,” not “neurotoxins.” It is only because they had the prefix “neuro” on the front which means they damage brain functions by definition that led me to use them.

      Another important point in the study is the one you allude to. They found when someone was exposed to more than one of these, the effect was much worse. This supports what previous toxicology studies have shown for quite some time (decades?). Metals like lead are known neurotoxins.

      So, this just 24 toxins and how they interact. Is it likely any of the thousands of other toxins also interact? Seems likely.

  • RZ

    Member
    November 14, 2023 at 4:38 pm

    This is a great topic. Thank you for posting! I have always wondered about this too. I have always been an “out of the box thinker” as well. To me, it seems like they should look more closely to the clusters where ALS is more prevalent (such as among military personnel) I question and have even found articles about flavor enhancers like monosodium glutamate(msg) possibly linked to ALS.

    I also came across this article linked to Cyanobacteria that I found interesting. https://www.iherb.com/blog/l-serine-a-radical-new-approach-to-als-parkinsons-and-alzheimers/811

    • doug-frazier

      Member
      November 14, 2023 at 7:46 pm

      RZ:

      The Guam cluster goes back to the early 1940s and has been studied extensively. From a study standpoint, the great thing about the Guam cluster is that it was in a very small area with fewer potential causes.

      A challenge with the military example for scientists is that they were exposed to so many toxins. So, it is more complex. There were massive open burn pits that burned everything we can imagine for example. I too hope these get studied more as well because they might strengthen the case for toxins in general and interactions among them. But they also have a wide variety of conditions.

      The Guam example was initially thought to be an obvious genetic cause because it devastated whole families. But, it ended up not being genetic at all. In fact, once the toxin sources were identified and avoided, new cases stopped occurring and nothing was passed on to subsequent generations from those that were affected.

      What if some of what we think today are genetic cases are actually just families being exposed to the same toxins because they live together?

      If you do a search on “history of ALS clusters in Guam” it will give you a lot to read. Searching on “scholarly articles on ALS Guam clusters” will bring up many of the scholarly studies I refer to. They can be difficult to read for us laypeople to read but the abstract and conclusions can usually be understood.

      On things like the article on L-serine, I suggest always going to ALSuntangled.com and click on completed reviews. It gets pretty good ratings but you can see any weak spots.

      Thanks for the post

      Doug

  • Mary

    Member
    November 14, 2023 at 6:15 pm

    Thank you for this thread. I too have questioned toxins rather than a disease, however, I then question has ALS seen an increase in the last 50 years since we have introduced so many toxins into our environment. I am obviously not a scientist but as a layman and now caregiver for my hubby I agree we need to ask these questions and there needs to be research.

    • doug-frazier

      Member
      November 14, 2023 at 7:49 pm

      marykg:

      Thanks

      Doug

  • RZ

    Member
    November 14, 2023 at 8:07 pm

    Thank you for providing the website Doug. I in no way endorse the L-Serine. I just thought the blog touched on some interesting correlations.

    I myself am a veteran. I did not deploy to the gulf but I am a Gulf War Era Veteran. I did however deploy to Bosnia and we were stationed next to a thermal power plan t which primary fuel was coal (definitely not up to EPAt standards). We actually always joked we were all going to get black lung disease from all the black smoke we inhaled. Who knows if there is any correlation to my ALS diagnosis.


    Anyway, I thank you again for this thread. Definitely food for thought!

    • doug-frazier

      Member
      November 14, 2023 at 8:59 pm

      I did a quick search on “is coal a toxin” and found this. Looks like your hunches were right!

      Coal <g-bubble jscontroller=”QVaUhf” data-ci=”” data-du=”200″ data-tp=”5″ jsaction=”R9S7w:VqIRre;” jsshadow=””>ash</g-bubble> contains hazardous pollutants including arsenic, chromium, lead, lithium, mercury, radium, selenium, and other heavy metals, which have been linked to cancer, heart and thyroid disease, reproductive failure, and neurological harm.

    • doug-frazier

      Member
      November 14, 2023 at 9:02 pm

      Read around the garbage that came with that link paste. It didn’t show when I pasted it.

      • Amanda

        Member
        November 16, 2023 at 6:07 am

        Doug and others,

        Thank you for all the great information, thoughts and opinions. One of the things I appreciate about our online community are these types of informative discussions. Sometimes emotions or beliefs cause people to see things differently, and this is appropriate. Sometimes, discussions don’t go this smoothly, although that is rare in our community. The respect and appreciation that our members show for one another and their input is admirable.

        Doug, I sincerely appreciate all the research you share and your ability to break down some scientific language into something we can comprehend. Please continue to do so! I find it very helpful (and I’m a moderator, LOL).

        Cheers to our wonderfully supportive community!

      • doug-frazier

        Member
        November 16, 2023 at 7:28 pm

        Amanda:

        Thanks for those comments. That means a lot coming from you!

        I have a few of these scholarly articles saved on my drive as PDFs. I would like to share them so people could see that all I am doing is quoting these great scientists but I don’t know how to post a PDF.

        Would you fill me in?

        I do know I could put them in a google drive folder and then share access via a link.

        Let me know what is preferable.

        Thanks

  • RZ

    Member
    November 15, 2023 at 9:37 am

    Hmm, that’s interesting. I appreciate you looking that up. I will definitely check it out. Thanks so much for your diligence Doug! Be blessed!

  • Otto

    Member
    November 16, 2023 at 2:24 pm

    This blog post lists a number of correlations which, of course, are not causes: http://www.preventivehealth.blog/2023/08/13/als-amyotrophic-lateral-sclerosis/

    • doug-frazier

      Member
      November 19, 2023 at 4:45 pm

      Otto:

      I have not seen the two links in the 5th paragraph of your attachment before and they provide evidence that there is significant work going on recently on environmental toxins that for some reason my doctors were not aware of.

      Not only does a comprehensive study in 2022 (first link) fully support the results from the earlier clusters but the second link shows there is a toxin blood test that I was unaware of as well.

      Let me know if you know details on this test. I will be trying to find out.

      <font face=”inherit”>If thousands of ALS patients could get this test and the results show that toxins are a significant cause and this matches the results of the global clusters, then we patients could seriously lobby for more </font>resources to<font face=”inherit”> start being spent on trying to see if there are ways to remove these toxins from our, blood, spinal fluid, intestines, etc.</font>

      This might provide us some actual hope for a change.

      <font face=”inherit”>I know those are a lot of ifs. But, unlike all the drug trials that we closely monitor despite 100% failure to date (</font>I<font face=”inherit”> can’t call a few month life extension a success on the cure front), these results have </font>multiple field clusters that confirm them.

      I will try to find information on how to access that test and post an update.

      Thanks Otto


  • Hal

    Member
    November 16, 2023 at 4:05 pm

    I think this is a spot on point and a huge reason why researchers need to focus on identifying more bio markers in patients with ALS. If there are multiple neurotoxins that can damage motor neurons then virtually all of the trials might be compromised. Riluzole is supposed to work by blocking glutamate…but if one’s ALS has nothing to do with excess glutamate the drug blocks a necessary amino acid. More research needs to be done to identify abnormalities in each PALS system. This neurotoxin theory also explains why everyone is effected differently.

    • doug-frazier

      Member
      November 17, 2023 at 3:06 pm

      Great points. You hit a couple key points I think.

      The complexity introduced by the 800-1,000 neurotoxins and then all the other toxins as well, is hard to comprehend. Imagine the sheer number of combinations of toxins and then the symptoms these create.

      To your glutamate point, currently we see the imbalance and try to do things to block it, or otherwise deal with it directly. But if the glutamate imbalance is caused by some combinations of toxins, unless we can remove the toxins, the damage will continue.

      If true, many of our current efforts might be like trying to find a cure for lead poisoning symptoms, if we didn’t already know the cause. Whole families get it so it would appear genetic. But not always, etc. It would sound like the hunt for the ALS cure and no drugs would cure it.

      Finally, your last point, this huge number of combinations would mean widely varying symptoms and the different doses would affect speed of progress.

      It does seem to potentially explain everything.

      Occam’s Razor encourages problem solvers to focus on the most obvious and simple solutions first because they are frequently right. We seem to be doing the exact opposite, despite having the multiple clusters in different areas that support this cause

      Thanks.

  • jamie

    Member
    November 21, 2023 at 4:41 pm

    Amen to everything in your discussion. The most disturbing is the lack of ALS knowledge in the healthcare industry.

    • doug-frazier

      Member
      November 22, 2023 at 4:35 pm

      That sure is the truth isn’t it!

      I recall early on asking where I could get an ALS best practices guide, naively assuming one had to have been put together over the years. Of course, one doesn’t exist.

      Thanks for replying.

      Doug

    • doug-frazier

      Member
      November 22, 2023 at 4:45 pm

      This article just came out on ALS News Today.

      This is the same bacterial neurotoxin that was found in the clusters.

      This shows just how ubiquitous they are.

      Also, previous studies showed that mice exposed only as newborns, frequently did not display symptoms until late in their lifespans. Sound familiar? 🙂

      I’m never getting attaching links right so I hope this works.

      https://alsnewstoday.com/news/cyanobacteria-idd-risk-als-found-dust-near-great-salt-lake/?utm_source=ALS&utm_campaign=cdc62e0eb8-ALS_ENL_3.0_US&utm_medium=email&utm_term=0_0593028b75-cdc62e0eb8-74110409

      • doug-frazier

        Member
        November 27, 2023 at 12:26 pm

        Another.

        Doug

        https://medicalxpress.com/news/2022-10-symposium-highlights-emerging-toxicants-neurologic.html

      • doug-frazier

        Member
        November 27, 2023 at 12:43 pm
      • doug-frazier

        Member
        November 27, 2023 at 12:47 pm

        Another.

        Doug

        https://alsnewstoday.com/news/aan-2022-how-environmental-exposure-affects-als-disease-risk/

      • doug-frazier

        Member
        November 27, 2023 at 2:02 pm

        My original reason for this post was in the title. Why isn’t there more research on neurotoxins recently because there is so much evidence for them causing it?

        Thanks to the great members of this forum leading me to other studies and then following these trails further, the answer seems to be:

        1. There is much more recent research recently in this area than I had found.

        2. All of it shows definitive proof that if we feed a person these toxins (including certain metals) or, even better, a combination of them they will get a motor neuron disease of some type.

        3. This aligns perfectly with the lessons from the clusters from 60 -70 years ago. This amount of evidence in alignment is amazing.

        4. Because this involves not just ALS but also dementia, Parkinson’s and all the other motor neuron diseases and likely many more, the likely right thing to do is make this a priority at the NIH with two concurrent initiatives:

        4a. To protect future generations, a public health initiative to ban these globally and remove them from contaminated zones.

        4b. To help current patients, focus future funding on methods to detoxify the blood, spinal fluid and other areas the science shows is necessary (gut biome?).

        We can speculate on why most doctors only discuss drug trials and the obvious answer is drug industry funding but I think discussing this is wasting our valuable time and just gets us enraged.

        We need to focus on what we can control. If we focus what little time we have left on getting the right initiatives started and pushing for action and speed, I think this is our best path forward.

        <font face=”inherit”>Connecting with those who have influence will help like the </font>ALS Association<font face=”inherit”>, Team Gleason, I am ALS, Gates Foundation, etc.</font>

        <font face=”inherit”>If someone at ALS News Today has contacts at the ALS Association, this </font>would be a great start.

        Doug

      • Deleted User

        Deleted User
        November 28, 2023 at 11:07 am

        I doubt the cause is a toxin because epidemiology ought to have detected a toxin, which would not likely be nearly uniform across the entire Earth. There is no evidence of safe place in any of the heretofore research . . . my belief is the cause is radiation damage, which does exist everywhere, however, this hypothesis does not produce an easily understood explanation for familial presentation.

      • doug-frazier

        Member
        November 28, 2023 at 7:38 pm

        <div>MuonOne:</div>

        In the 4th link above you will see the results of a symposium in Chicago in 10/2022.

        In the second paragraph you will see that the evidence points to toxins mediated by genetics.

        The other links point in the same direction.

        Doug

      • Deleted User

        Deleted User
        November 30, 2023 at 3:27 pm

        I reviewed four articles above and each speculate about possible toxicant, however, they sight no correlated substance. Research on the blue green algae was started quite a few years ago in part because it is so ubiquitous. I am not trying to say the possible toxicant hypothesis is absolutely wrong, I am trying to say don’t derive all your intervention candidates from the toxicant basket . . . I say this because I think the toxicant hypothesis is failed: current epidemiology evidence calls for a toxicant with properties far unlike any heretofore known. The lack of contagiousness is one of the critical ‘achilles heel’ of toxicant as hypothetical cause. Another is the strangeness patients always have different Amyotrophic Lateral Sclerosis initiation point. Such factors are out of character with ailments produced by identified toxicants. Authors, to save the weak hypothesis, almost always toss a combinatoric argument into the soup.

      • Deleted User

        Deleted User
        November 30, 2023 at 3:31 pm

        I intended to inquire of your consideration of edaravone and whether you have undergone a functional magnetic resonance imaging of your brain fMRI?

      • Deleted User

        Deleted User
        November 30, 2023 at 4:10 pm

        <div>While Amyotrophic Lateral Sclerosis is better referred to as a syndrome, circa 1960 Bunina body inclusions were found in neurons of Amyotrophic Lateral Sclerosis patients; no one knows why they are there or whether they are harmful . . .</div>

        FYI, as I perceive the readers of this thread have never heard of this:

        Bunina bodies in amyotrophic lateral sclerosis

        https://pubmed.ncbi.nlm.nih.gov/18069968/

      • doug-frazier

        Member
        December 29, 2023 at 3:58 pm

        Muon:

        Thanks

        I had not seen that.

        The thing that baffles me is that there doesn’t seem to be a database showing the impact of the 1,000 neurotoxins in humans or animals.

        Another article came out today.

        https://alsnewstoday.com/news/5-toxic-chemicals-air-possible-als-risk-factors/?utm_source=ALS&utm_campaign=b7fbe7bdb1-ALS_ENL_3.0_US&utm_medium=email&utm_term=0_0593028b75-b7fbe7bdb1-74110409

      • Deleted User

        Deleted User
        January 3, 2024 at 11:21 am

        I think some chance exists for blue-green algae as carrier for another toxic molecule that ordinarily could not get in.

  • KICO

    Member
    January 2, 2024 at 11:02 pm

    <font style=”vertical-align: inherit;”><font style=”vertical-align: inherit;”>trabaje en la agricultura , y en una petroquimica, por mas de 20 años, de niño vivi en un rancho, con uso de retilizantes, herbicidas, considero que hay personas que tenemos alguna debilidad genetica, que esta haciendo que estos factores ambientales generen el ELA, en mi caso, se inicio despues de que me dio el COVID- 19 y a un mes de haberme puesto la vacuna.</font></font>

    • Deleted User

      Deleted User
      January 3, 2024 at 11:19 am

      KICO, I used google translate to convert your post into english:

      <font style=”vertical-align: inherit;”><font style=”vertical-align: inherit;”>I worked in agriculture, and in a petrochemical company, for more than 20 years, as a child I lived on a ranch, with use of retilizers, herbicides, I consider that there are people who have some genetic weakness, which is causing these environmental factors to generate ALS, in my case, it started after I got COVID-19 and a month after getting the vaccine .</font></font>

  • doug-frazier

    Member
    January 4, 2024 at 2:21 pm

    Muon:

    In the scholarly papers there are multiple examples of various algae carrying toxins that caused it.

  • doug-frazier

    Member
    January 4, 2024 at 2:32 pm

    Kico:

    With your extensive exposure to so many toxins for so many years, I would think the Covid timing is just coincidence.

    This is a slow developing condition typically.

    Many of the farm toxins are the ones showing up in the studies.

    Thanks for the translation Muon.

    Doug

Log in to reply.