Bacteria and Fungi Link to ALS Patients

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Doglady

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https://alsnewstoday.com/2019/03/20/bacteria-fungi-central-nervous-system-als-patients/

https://www.frontiersin.org/articles/10.3389/fnins.2019.00171/full

My daughter just forwarded this to me. Of course she would like to think this is hopeful. So, I am wondering what others may think about this study from Spain which found bacteria and fungi in neural tissue of PALS and suggestions of a possible future treatment for ALS...?

Thanks for any words of wisdom and thoughts to unravel all this highly scientific language!
 
It’s really interesting. They are noting bacteria and fungi in the neural tissues of patients with ALS.

To jump from that observation to the conclusion that the bacteria and fungi caused the ALS is another matter which they have not yet proved. To prove it might involve using an animal model of ALS and instilling these microorganisms into the neural tissue and see if ALS results. Then determining if the ALS goes away upon treatment is another matter.

It’s also possible that something else causes the ALS and that the bacteria and fungi move in because conditions now favor their presence.

It’s interesting work, but still just an observation, with more work needed to answer the many other questions.
 
ALS Study Finds Bacteria, Fungi in Central Nervous System of Patients

Searching for Bacteria in Neural Tissue From Amyotrophic Lateral Sclerosis

My daughter just forwarded this to me. Of course she would like to think this is hopeful. So, I am wondering what others may think about this study from Spain which found bacteria and fungi in neural tissue of PALS and suggestions of a possible future treatment for ALS...?

Thanks for any words of wisdom and thoughts to unravel all this highly scientific language!

I have been following some of the same researchers' work with other neurodegenerative diseases and am still not entirely certain what to think of it (although I think I have already seen more than one critique of such work that may be rather uninformed, or even perhaps somewhat brutal).

However, this and similar research overall seems to be showing that evidence of infections that are known to be able to cause disease is often being found in patients, and in what may well be sensitive places in patients' bodies. It's often frustrating to read research like this that may be describing infections that may call for treatment whatever their exact relationship to various neurodegenerative diseases may really be, but not know if patients were treated for infection, or the outcome.

I've seen a number of reports of antimicrobial therapies used in cases of illnesses associated with certain infections that are suspected of causing them, and if memory serves it seems like good results are most often reported.

Perhaps it is fortunate that while antibiotics or antifungals may not be approved for treatment of various neurodegenerative diseases, they have been already approved for treatment of infections such as have been detected from patients in studies like this.

This kind of neurodegenerative disease research might at least be showing us that patients with various neurodegenerative diseases may to be prone to certain infections and may have a higher likelihood of infection that normal?

Patients with various neurodegenerative diseases showing similar signs of infection might more appropriately be the subject of antimicrobial therapies than the subject of controversy?

Roca
 
Thanks, I still don’t know what to think about it. My Neurologist thinks it’s too early to tell anything but would refer me to an infectious disease specialist to discuss it if I’m strongly interested. I guess with the idea of seeing if a course of antibiotics might be worth a try. Not sure that I’m strongly interested.
 
It’s really interesting. They are noting bacteria and fungi in the neural tissues of patients with ALS.

To jump from that observation to the conclusion that the bacteria and fungi caused the ALS is another matter which they have not yet proved. To prove it might involve using an animal model of ALS and instilling these microorganisms into the neural tissue and see if ALS results. Then determining if the ALS goes away upon treatment is another matter.

It’s also possible that something else causes the ALS and that the bacteria and fungi move in because conditions now favor their presence.

It’s interesting work, but still just an observation, with more work needed to answer the many other questions.
Karen- appreciate your input..... Sassy
 
I hope it's not too soon to tell that these researchers' very consistent findings of Burkholderia bacteria might be genuine cause for concern? Most species of Burkholderia detected in this study seem to have gone unidentified, but a number of Burkholderia species already have some pretty bad reputations.

That may even be more troubling than any of the fungi they found and the most common fungal find seemed to be Candida, which may not be able to contribute anything unique to ALS for as often as Candida has been found in other neurodegenerative diseases, including by the same researchers?
 
I guess with the idea of seeing if a course of antibiotics might be worth a try. Not sure that I’m strongly interested.
I wouldn’t bother. Microbes cohabit our bodies. Not all of them are pathogenic. People with ALS go on a variety of antibiotics all the time for various infections, and the ALS doesn’t get better. It’s not clear if the antibiotics would even cross the blood brain barrier to reach their target or if it would make a difference. I think the study makes interesting observations, but way more research is needed to determine if it’s clinically significant.
 
It's your call if you want to be a human lab rat. I hadn't had an antibiotic in 30 years until I developed a UTI. I had never had one before and the doctor prescribed Cipro so I asked that he change it to Nitrofuranton because Cipro is a broad spectrum antibiotic and can actually cause ALS-like symptoms. It did in my brother. I didn't want to mess up my microbiome any more than I had to.

That said, I did have a stool culture that tested for overgrowth of bad bacteria/yeast. It was normal.

Not saying the idea shouldn't be pursued but, IMO, it should be done scientifically.
 
I wouldn’t bother. Microbes cohabit our bodies. Not all of them are pathogenic. People with ALS go on a variety of antibiotics all the time for various infections, and the ALS doesn’t get better. It’s not clear if the antibiotics would even cross the blood brain barrier to reach their target or if it would make a difference. I think the study makes interesting observations, but way more research is needed to determine if it’s clinically significant.
Well, yes - absolutely. I'd probably want to be very careful about doing anything hasty on the basis of these findings, but I'd also want to be very careful to not be too quick to dismiss the significance of what may have already been found here.

Antibiotics are of course not all created equal, nor are microbes - but that may mean that this research isn't as easy to qualify as simply saying that patients with a particular diagnosis get antibiotics all the time without seeing improvement, therefore antibiotics are not capable of causing any improvement. Which antibiotics? Which microbes? Where were the microbes found? The same microbes that may be harmless in the gut aren't necessarily harmless if found in the blood or the tissues. As far as I know, that is sepsis.

I'm sure I'd want to leave it to the discretion of a qualified physician whether a microbe of concern is present and whether it warrants antimicrobial treatment, but I already know that microbes can be diverse enough to sometimes defy detection by usual means and to form diverse colonies that may interfere with the results of various therapies. For example, researchers reported that Candida is able to form biofilms that can not only provide refuge for anaerobic bacteria, but for viruses as well. Iranian researchers reported that this arrangement is somehow able to protect HSV-6 from antivirals. That may be of some relevance to MS, and to antimicrobial therapies in a number of instances.

I think I really would like to suggest maybe reading up just a little bit on Burkholderia bacteria before deciding that they're anything that belongs in the human body. It might be worth at least discussing with a physician?
 
I am here because of a bad trip to the dentist. A tooth abscess, root canal and then ALS symptoms a couple months later. Diagnosed in March, progressing very quickly.

This thread is interesting to me because a deadly bacteria seems to have entered my brain. Should I bring this case up to the doctor?
 
You can certainly discuss it with your neurologist, but it would be hard to establish a link. For one thing, you were probably losing motor neurons more than a couple months before your first ALS symptoms. It’s also hard for bacteria to penetrate the blood brain barrier. If they do, this generally results in meningitis, brain abscess, or other severe systemic symptoms. Still... it’s an interesting theory, and every case is different. So it’s definitely worth sharing with your doctor.
 
Thanks. I need a miracle at 38 years old.
 
Thanks, I still don’t know what to think about it. My Neurologist thinks it’s too early to tell anything but would refer me to an infectious disease specialist to discuss it if I’m strongly interested. I guess with the idea of seeing if a course of antibiotics might be worth a try. Not sure that I’m strongly interested.
I went through Lyme treatments after my symptoms started. Three months of IV rocephin, daptomyacin, and azithromycin. No change. Not saying it couldn't work for someone. Just an FYI though - I read somewhere (I think NIH) doxycycline has been linked to an acceleration in ALS patients. If it's true that ALS is linked to an unhealthy microbiome or fungals - antibiotics have the potential to make it worse. I think sometimes we know enough to be dangerous. I'm definitely not trying to be discouraging, just more of a heads up.
 
Minocycline, in the same class as doxycycline but with more penetrance into the CNS, was tried as a potential ALS therapy and was associated with faster progression in a randomized trial. Analysis after the trial was completed couldn't determine why, and, contrary to other published speculation, could not identify a "sweet spot" dose. So none of the tetracyclines would be on my "stuff to try" list.
 
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