• Posted by Jim on February 27, 2023 at 8:06 am

    Hope everyone is well, I know personally how challenging ALS can be! Wanted to leave you a link regarding mycotoxins, within the link there will be 4 sublinks in black. Best to start the earliest sublink and move toward to the most recent article. This topic has been brought up before and mycotoxins/fungus need to be taken serious as a probable cause of ALS. Urine/blood testing should show if deadly mycotoxins are in pALS bodies. Maybe there have been research Trials with antimicrobials on pALS, I could have missed reading about those. Again hope everyone is well and stay strong, please read the 4 articles/sublinks, Dr. William Reid has done some very intriguing work!

     

    Wish you all the Best, Jim

     

    https://www.authorea.com/users/349036-william-reid

    Dagmar replied 1 year ago 6 Members · 14 Replies
  • 14 Replies
  • Jim

    Member
    February 27, 2023 at 10:53 pm

    Added thoughts, football/soccer players have higher rates of ALS: close contact with mycotoxins in soil fields. Higher levels of ALS with military personnel: biological/fungal weapons were used in Iraq. As far as living far from a waterway and still getting ALS, whole colonies of bacteria/fungi can travel within air currents. Again I’m not particularly saying fungus is the only cause of ALS, what I’m saying is it could be a cause and drugs trials need to be performed ASAP!

    All the Best, Jim

  • Dagmar

    Member
    February 28, 2023 at 2:44 pm

    The article is an interesting one… but I don’t support the author’s argument that ALS is caused by a fungus in our nasal passages. Also, he should discern that he is writing about sporadic ALS, not genetic ALS.

    ALS symptoms mimic many other conditions… such as Lyme Disease and others. The author believes ALS is caused by environmental exposure and this does not account for the ALS patients found worldwide (we all don’t have the same environmental exposure to toxins) and that sporadic ALS affects one family member and not others in the same family.

    Unfortunately, I have read similar versions of this same theory 12 years ago when I was newly diagnosed, and, these theories have either been discounted or never studied further than the initial premise.

  • Jim

    Member
    March 9, 2023 at 10:58 pm

    During my ALS diagnosis which consisted of two EMG’s, two MRI’s and a blood test for diabetes, the neurologist never mentioned a blood test for pathogens, the doctor did state you probably have Lou Gehrig’s Disease, which there is no known cause, no cure and only limited treatment options. Wanted to know if anybody got tested by blood/urine/lumbar puncture for bacteria/fungus during their diagnosis? This topic of bacteria/fungus has been going on for too long, we need to start testing and possibly start Trials with antimicrobials.

  • Rich

    Member
    May 30, 2023 at 4:22 pm

    <p style=”text-align: left;”>What about brellie bacteria?</p>

    • Dagmar

      Member
      May 30, 2023 at 4:24 pm

      Rich, brellie bacteria causes Lyme disease.

  • Rich

    Member
    May 30, 2023 at 9:33 pm

    I have read that alot of people with als have this bacteria.

    If this is true and testing shows the bacteria is present then why not treat for it?When you have suppressed immune  system nothing can get better.

     

    A

    • Dagmar

      Member
      May 31, 2023 at 11:33 am

      Rich, I believe your statement would be more on point if written this way: a lot of people have this bacteria which can lead to Lyme disease and they have been misdiagnosed as having ALS.

  • Amanda

    Member
    May 31, 2023 at 7:51 am

    This article appears to be more of a literature review with various hypothesis. Most of these have been researched and continue to be investigated from what I’ve read in other articles. It is important to look at peer reviewed medical/scientific journal articles when researching and make sure the article is not someone’s ideas. Also, until they can make a clear connection with irrefutable evidence, I doubt we will see much to address bacteria and fungal connections to ALS medically for several reasons. Insurance being one; and there needs to be ways to distinguish between types of ALS so that they can determine how to address each “cause”. They are doing this in genetically linked ALS which I’ve read much more about.

    We also need to be aware because this an area where private groups that do not take insurance take advantage of our community by offering ways to determine the cause and how to cure ALS. Sometimes I think that opportunist see our community as an easy target and that infuriates me! Always do your research and due diligence!!

    It will be interesting as we learn the different things involved with causing ALS, and if there are both genetics and environmental factors. I know it feels, or is, taking too long to find cure/cures for ALS. For now we can advocate for research, raise awareness and funds for research and advocate for our own health and needs. We need to address what we can each day in our own lives too. Thank you for sharing information and ideas.
    Amanda

  • Fran Finney

    Member
    June 1, 2023 at 5:19 pm

    Well put, Amanda. It is horrible to be diagnosed with ALS or to have a loved one diagnosed with ALS. Many of us desperately grasp at all kinds of untested treatments. My husband and I certainly did – and we spent much needed money on them. But the only impact these treatments had on Hal was to drain our savings, making caring for him as his disease progressed more challenging.

    I certainly empathize with people looking for and trying untested treatments. But really the only way to find out if a potential treatment can be beneficial is through thorough research and clinical trials. And that, unfortunately, takes both time and funding.

    • Amanda

      Member
      June 2, 2023 at 9:00 am

      I completely understand looking for a cure, or even a miracle. I really do! I’m the 15th person in my family to have ALS, and I’ve watch many family members succumb to the beast. Perhaps because ALS has been in my family, and life for decades, that I have given up on a miracle. Instead, I rely on science and facts. Show me the evidence!! (LOL) I’ve researched the daylights out of miracle cures and alternatives to the traditional treatments or lack there of. There is no doubt in my mind that eating healthy, reducing stress and taking care of yourself will contribute to longevity. That is with or without ALS. When I saw a nutritionist at my first clinic visit she did tell me to eat less sugar and caffeine and explained why and how that could impact my progression. She also told me to be sure and eat protein, healthy protein and healthy fats. She explained how each would impact my body/ALS. My needs are different than someone without ALS. So, yes, there are things we can do to help our bodies and minds. If ALS was so simple such as a specific bacteria or fungus, that would no doubt have made worldwide headlines. Could it contribute to some cases? Well, perhaps it could and time and research will show us the answers.

  • Luke J Kelly

    Member
    June 14, 2023 at 4:27 pm

    I submitted a post to this subject, I believe it was Friday June 9 but I haven’t seen it come through.  Did you get it?  Please advise.  Thank you.  Luke

    • Dagmar

      Member
      June 15, 2023 at 12:08 pm

      Luke, I checked the software archives, and your post wasn’t registered. Perhaps try again.

  • JohnW

    Member
    June 15, 2023 at 7:51 pm

    All

    This avenue is being explored and may help in understanding of what we should or should not expect to find in our gut microbiome. This reference is in the NIH clinical trials database.  https://clinicaltrials.gov/ct2/show/NCT04150809

    God bless to all for i too am waiting a solution.

     

  • Luke J Kelly

    Member
    June 16, 2023 at 8:05 am

    Dagmar and Amanda,

    Thank you for your work in the fight against ALS.

    I think all of us pALS are looking for something “extra” to do while we wait on the science to catch  up to the disease.  The Forums provides a vehicle to discuss the “extras” that interest us.  Responding to a Forum in itself can feel like doing something “extra” so thank you for providing this space.

    In the press, we’ve all seen how the professional athletes and movie stars like to talk about their platforms and how they need to use them to speak about politics, culture, etc.  My thought is that through your work in ALS and with the Forums you have earned a platform from which to speak for us 30,000 pALS .  The ALS strategic plan states “ There is an estimated lifetime ALS risk of 1/400, which predicts that more than 800,000 individuals now alive in the US will succumb to ALS. “  So to my way of thinking if you add in care givers, family, and friends you have earned a platform that speaks for many. many more than the current 30,000 pALS.

    I bring this up because I believe with these kinds of numbers, we should expect a response from the experts when the forums discussion turns into more of an inquiry than a conversation.  For instances the forum on “Does fungus cause ALS”  I am not a scientist or medical professional but the documents that were referenced were written by MD’s.  Rather than dismiss the subject as irrelevant wouldn’t it be better to use your Forums platform to ask for follow up from the doctors?  A letter to the doctor asking why his papers have not been peer reviewed is warranted.  At the same time, a letter to ALS untangled asking for their review of the subject would round out the investigation.

    Again, I am not qualified to argue one way or the other as to mycotoxins/fungus but, on the other hand, I respectfully don’t see a lot of difference between that article and the one entitled MSC transplants found to extend survival by 4 years in ALS: Analysis which references studies from the early 2000’s.  I believe it would be appropriate for the Forums to ask the questions that were sited by your participant responders:

    Studies from the 2000’s?

    Following patients for 20 years?

    Where’s the urgency?

    What is the current status for use in treatment?

     

    I realize ALS News Today is the publisher of both the article and the Forums and this is not meant to “show up” anyone but in my 21 months of being a pALS, this is the most frustrating thing for me.  Most articles start with “XXX shows promise” and then they all end with more research is needed but it never says when the next study is planned to start and finish.  I would like to see the Forums encourage the reporters to ask the question and print the answer in the article.  If the answer isn’t “……further study will start immediately” then the reporter should ask why it isn’t starting immediately.

    It’s not like these are the only two articles in question, I still can’t understand why the Chinese Herbal patch article was written if there is evidently no plan to provide availability on the horizon.  Again, I believe a follow up from the Forums to the reporter would carry some weight in getting an answer to an obvious question.

    I believe you are providing a great service in moderating the Forums column and I thank you for that; at the same time, I ask and encourage you to use your platform to influence all sectors of the ALS industry.

    Thank you,

    Luke

    • Amanda

      Member
      June 18, 2023 at 9:00 am

      Luke,

      You raise some very important points, questions and suggestions.

      In regard to, “we should expect a response from the experts when the forums discussion turns into more of an inquiry than a conversation…”  This is a great idea, especially if some of these “experts” were members of the forum. The forum is designed to provide support and for pALS and caregivers to ask and answer questions to/from one another. It unfortunately  was not designed to find the answers from the “experts” or authors of specific articles, although I wish some of these people were on the forums and would respond.

      Our roles as moderators is outlined in our job descriptions by Bionews.  Dagmar and I both go up and beyond by researching topics and reaching out to people who are actively working in the field of ALS research when we can. We both have  to manage our health, other jobs and responsibilities, so unfortunately our roles and time limit us too.

      When I can, I will gladly reach out to authors and experts with questions.  It definitely would be interesting to hear input from these people.  I suspect that in many cases they will direct me to another article, but you never know! Any of our forum members are welcomed to reach out to experts in the field and share information too.  That would be wonderful. If anyone decides to do this make sure you post the experts name, credentials and affiliations with ALS research.  Also, anytime you can include links to peer reviewed medical journal articles that is a bonus!!

      I  often go to my medical team who has been participating in the pre-fALS study, Tofersen trials, and many other ALS research studies with questions.  That influences my personal thoughts on ALS.  They stick strictly to science and evidence…..as do I. I’m certain I am their “Patient from ….”  I’ve emailed and called them so many times because of questions raised on the forums I’m sure they are like, “Oh, it’s her again!”  Ok, may they don’t think like that because they always take the time to call me or respond by email.  They often refer me to research articles but many times the response is, “Well, that is a good question and that is why are are continuing to research….”

      By no means did we mean to be dismissive to any topic or theory.  I suspect that there are “different types of ALS, with different causes” as I’ve mentioned previously.  No theory is that is being researched is meant to be dismissed.  Heck, there are probably a lot of things that we don’t even know about that should be investigated!  We are trying to navigate and encourage conversations that are relevant based on recent data, and research.  Are responsibilities on the forums also direct us to ensure that the discussions are providing helpful information to our online community.  Our community also needs to keep in mind that research is often influenced by other research, and of course, financial support. That’s why supporting organizations that fund research that we/you feel is significant is vital to more research and the right research is happening.

      Luke, you clearly put a great deal of thought and time into your response and that is appreciated. You have some great ideas which are always welcomed. I know I haven’t addressed all of you questions and suggestions, and I’m sure Dagmar will respond as well.  Let me take some more time to think and see how we/I can provide a better services to our forum members.  Also, our ALS News Today team reads the forums and works closely with Dagmar and myself to improve the forums on a daily basis.  We get a great deal of support from our team. I’m sure they will provide Dagmar and I some feedback and direction.

      Again, thank you for your time and suggestions.

      Sincerely,

      Amanda

    • Dagmar

      Member
      June 19, 2023 at 7:53 pm

      Luke, You have brought up good points… and I agree with Amanda’s excellent and heartfelt response.

      We pALS (and our support circles) impatiently await progress toward curing ALS. Even though things seem to be going at a snail’s pace, the big picture is that we are at a much better point than 10 years ago. The reality is that we with ALS are vying for the same research dollars and staff as 50+ other Rare Diseases.

      There are no “reporters” at ALS News Today, we have Science Writers who interpret and explain press releases generated by pharma companies or research institutions. The ones who should be asking why and why not are the many ALS advocacy groups that exist (like I AM ALS).

      I appreciate the opportunity to interact with our forum members – – many in their first 1-2 years of ALS. I see so many of the same initial questions, emotional shock, and need for resources. I value using my own 13 years of living with ALS to help others see not only the big picture but also their potential to live well.

      Thank you for taking the time to write and share your thoughts. Let’s keep talking and bringing up more essential issues.

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