Amyotrophic Lateral Sclerosis (ALS) Support Group
Amyotrophic lateral sclerosis (ALS, sometimes called Lou Gehrig's disease, Maladie de Charcot or motor neurone disease) is a progressive, almost invariably fatal neurological disease. In ALS, both the upper motor neurons and the lower motor neurons degenerate or die, ceasing to send messages to muscles. This community is for those afflicted with the disease or who know a...
Hi, I just joined this group because a good friend of mine from high school has a brother who's been diagnosed with ALS. I am trying to find information that might offer them hope, and better yet, anything that might offer real and lasting hope.
I have some informal background in neurodegenerative diseases because a number have occured within our circle of friends and loved ones, and also because there is often enough some suprising overlap between neurodegenerative diseases and my own seemingly unrelated medical problems. (The common denominator may be infection).
Not to get anyone's hopes up prematurely, but I've been following the work of researcher Diana Pisa and her colleagues, who have been looking for and finding evidence of fungal infection in various neurodegenerative diseases, and have reported some initial evidence of fungal infection in ALS as well. (As with other neurodegenerative diseases, if fungal infection is playing a role, bacteria might also be participating rather than there being any singular microbial cause).
I thought I might start a thread as a place to deposit links and information as I begin to try to see how much we know, and how much we don't know yet, but I have so much to learn that I'm sure others must have things to teach. (I would be very interested to hear, for example, of any possible signs of infection or anything else that might be related to infection, that anyone experienced prior to onset of ALS symptoms).
Evidence for fungal infection in cerebrospinal fluid and brain tissue from patients with amyotrophic lateral sclerosis. (2015)
Alonso R1, Pisa D1, Marina AI1, Morato E1, Rábano A2, Rodal I2, Carrasco L1.
https://www.ncbi.nlm.nih.gov/pubmed/25892962
Full article: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4400386
Fungal infection in neural tissue of patients with amyotrophic lateral sclerosis. (2017)
Alonso R1, Pisa D1, Fernández-Fernández AM1, Rábano A2, Carrasco L3.
https://www.ncbi.nlm.nih.gov/pubmed/28888971
(Either this is a very short article, or I cannot yet find a full copy of this that is free).
"Overall, our present observations provide strong evidence for mixed fungal infections in ALS patients. The exact mixed infection varies from patient to patient consistent with the different evolution and severity of symptoms in each ALS patient. These novel findings provide a logical explanation for the neuropathological observations of this disease, such as neuroinflammation and elevated chitinase levels, and could help to implement appropriate therapies."
Searching for Bacteria in Neural Tissue From Amyotrophic Lateral Sclerosis (2019)
Ruth Alonso,† Diana Pisa,† and Luis Carrasco*
https://www.ncbi.nlm.nih.gov/pubmed/30863279
Full article: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6399391
"Indeed, fungal yeast and hyphal structures can be directly visualized in neural tissue of ALS patients, and a number of fungal species have been identified in the central nervous system (CNS)...
Our results indicate that bacterial DNA and prokaryotic cells are present in CNS tissue, leading to the concept that both fungal and bacterial infections coexist in patients with ALS. These observations lay the groundwork for the use of appropriate therapies to eradicate the polymicrobial infections in ALS..."
That is probably the best advice ever given on one of my diagnoses with very strong links to infection, but it may also hold true for other diseases with links to infection. This might be simple common sense, and yet it may elude a number of authors who are researching and writing about various diseases.
Likewise, it may also be very important for doctors to try to separate diagnoses from infections that may be typical in patients with those diagnoses - antibiotics or antifungals may not be approved therapies for the diseases in questions, but they already have approval for treatment of the infections that are routinely being reported in patients with these diseases.
I've already had considerable trouble myself trying to get antibiotic or antifungal treatment from doctors and even specialists who can't keep the two sorted out in their own minds, and these troubles have been compounded by them insisting on finding symptoms that may be typical for a single species, rather than the mixed or unusual symptoms that may come from infections with more than a single species.
The best evidence that may give them reason to look further into these matters may not be the clinical symptoms they are (or aren't) seeing, but the consistent findings of certain infections in patients with a particular diagnosis that appear in research reports. That may hold true for one disease after another.
(I haven't looked into it yet, but for myself at least I'm wondering about the possibility of working with doctors on-line, particularly those associated with on-line pharmacies. From what I'm reading, some of them seem willing to consider possibilities that my local doctors might not be at all willing to consider).
I signed up for a Deep Dyve trial to look at the 2017 paper on fungi in ALS but the supplementary materials didn't seem to come with it? If they named specific species they found, it might have been there, as I believe the did in their 2019 paper. In 2017, they found Candida in almost all, and Fusarium fungus in many. Fusarium is another genus of microbe that can have pathogenic species, but I have no info on which species of Fusarium they actually found.
Perhaps it's possible that Candida could assume some role of protecting or assisting Burkholderia bacteria? I'm somewhat skeptical that Candida is entirely innocent, but it may be hard to imagine Candida being the main offender since it doesn't seem to be distinctive to ALS, but rather it may appear in a number of other neurodegenerative diagnoses, where perhaps it might somehow also aid and abet the bacteria that are associated with those disorders?
Anyway, as with their work on Alzheimer's, I'm praying these researchers actually found what they were looking for in ALS.
Also, I sent my friend this article suggesting that pimozide might slow ALS progression, I hope more effectively than some other things. I don't know how attractive of an option it might ever be, but it's already been used on people for other things, for whatever that's worth.
https://www.sciencedaily.com/releases/2017/11/171116104804.htm
Interestingly because of the subject of possible infection in ALS, there are a couple of articles that suggest that pimozide might have little-suspected anti-infective and anti-fungal properties (this came to my attention because of my Tourette's - we seem to have many researchers who think Tourette's might be caused by throat strep getting where it doesn't belong. Maybe a lot of diseases will prove to be caused by unsuspected infections?).
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2630664
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3571299
Also, on the ALS Forums I saw a list of supplements that someone claimed had been recommended by a Canadian ALS clinic, and they also claimed it had greatly slowed down the progression of their ALS. They sounded sincere and didn't seem like a salesman, and the more interesting things on the list might have all been things that provide support to mitochondria, the "powerhouses" of cells, including the supplement "PQQ". I'd just got through reading in journal articles about how a crucial function of CuATSM might be to help protect mitochondria from damage from abnormal proteins in ALS, so it did make me wonder if the person posting might be onto something.