Fungal and microbial ?

[Dis1960]

Saw this on a Facebook post by Nigel Jones in the group “Life With MND”

“Fungal and bacterial infections consistently found in the central nervous system of ALS/MND patients.
Study concludes sufferers could be treated with existing antimicrobial treatments!”

https://www.frontiersin.org/articles...019.00171/full

[Terry]

Thanks for the info Dis;

Love Terry

[Doug Carpenter]

Many thanks Dis1960.

Fascinating new angle!

Doug

[Dis1960]

A further post by Nigel Jones in the same thread - note particularly the last line

I emailed one of the authors. He replied today.
He recommended Fluconazole 200-400 mg per day and
Doxicicline 100mg every 12 hours, this treatment should be
Continued for six months and then the Neurologist has to evaluate if the treatment has had a positive effect.
I’m going to talk to my MND nurse today about it.
We don’t know if their findings are cause or effect.

[Guest]

Infection?

A further post by Nigel Jones in the same thread - note particularly the last line

Is an underlying infection the cause of MND? As people with AIDS are prone to all types of infection including viruses, bacteria and fungi due to a virus destroying their white cells. It is these infections that kill them not the AIDS virus. Here's the interesting part: MND is 100 times more common in patients with AIDS then the general population

[Guest]

Also when people with AIDS and MND are treated with anti-viral therapy, in some cases (but not all), their MND improves as well. Based on this fact, it suggests that allowing the immune system to recover, the immune cells then attack the substance or organism that it responsible for the MND.

[Barry52]

Hi Alfadoc,

Triumeq, an antiviral drug used on patients with aids was trialed in Australia for ALS patients with some good results. The trial was too small to prove positive but I believe the trial will be repeated on a bigger scale. Using repurposed drugs will save time and money if they prove successful for MND.

Barry

[Guest]

i had read about the triple anti-viral therapy which was very interesting and despite the small numbers, it suggests the possibilities that a retrovirus is implicated or something other microbe that is not attacked when the immune system is suppressed. The fact that the MND improves once the immune system recovers is very interesting together with the paper from Madrid which increases the likelihood of an infectious process.Unfortunately none of the trials of repurposed drugs are looking at ways to affect the immune system (with the exception of low IL-2).

[nunhead_man]

Good afternoon,

Thank you for me as well - I just emailed my neurologist at Kings to give him a heads up and see if they might prescribe the drugs for me.

Best

Andy

[Ash]

Hello all,

I have no family history of the condition and I am now often preoccupied with the thoughts of how this condition could have manifested itself, as I know most people on this forum will be.

Over a number of years now I have had an ongoing issue with a reoccurring fungal skin infection known as pityriasis versicolor (https://www.nhs.uk/conditions/pityriasis-versicolor/) which is described on the NHS website as being caused by a strain of yeast called malassezia and is said to be "harmless".

However after reading the above posts I immediately thought could this be the reason? The research does indeed identify malessezia as one of the strains to have been found amongst others. This is of course quite a jump to make however it seems to be logical in my mind as fungal infections of the CNS do occur.

I have briefly mentioned this to my GP and neurologist and the consensus is that a healthy immune system would have no problem in fighting off these types of infections. However is it beyond the realms of possibility that the "healthy" immune system could be overcome given the right (or wrong) conditions and is a fungal infection considered when undergoing tests such as a lumbar puncture?

I have previously contacted the people at MND connect about this who were kind enough to write back with a considered response and pointed me in the direction of some further information from ALSuntangled which appears to discredit the aforementioned research (https://www.tandfonline.com/doi/full....1622197?af=R&). Whilst pointing out that the research is apparently unreliable it goes on to conclude that the existence of fungi within the CNS and its possible effects are currently unknown and that they hope further tests will be carried out.

ALS is obviously a complex thing to understand however I personally do believe that fungi plays a role or is at least a significant risk factor.

I hope this is of interest.

All the best.

[Ash]

http://www.nrronline.org/article.asp?issn=1673-5374;year=2019;volume=14;issue=9;spage=1490;epage=1493;aulast=French

Another interesting article suggesting a link between ALS & fungi present in grass and drinking water.

[Ash]

Curcumin believed to have positive affects in treating ALS.

https://www.neals.org/for-people-with-als-caregivers/educational-webinars/cured-by-curcumin-untangling-another-als-x-file

ALS untangled also investigating use of curcumin, feel enough evidence for them to start a trial.

Coincidentally curcumin also found to be effective against strains of fungi.

https://academic.oup.com/jac/article/63/2/337/711570/

https://academic.oup.com/mmy/article/50/1/26/989367/

[Gillette]

Curcumin believed to have positive affects in treating ALS.

I'm surprised how depressed this makes me feel. I'm on the MIROCALS trial (obviously don't know whether I'm on the drug or the placebo), because of that I'm on Riluzole and, prior to coming into hospital, I was taking curcumin, and yet my MND seems to have progressed quite quickly. It doesn't feel very fair. I know life's not fair but, for once, I'd like not to have the short straw.

[Sheila]

I know I had to stop reading it, made me feel really down. My MND seems to have got worse lately. Like you said Dina, life's not fair.
Sheila.

[Barry52]

I listened with interest to the webinar from Richard Bedlack who is a respected American researcher. The conclusion appears to be that taking the correct form of curcumin is important. For those that don’t wish to listen to the webinar the recommended type is Theracumin. I have been taking curcumin for a year now and whilst I cannot substantiate any improvement in MND progression as I have a slower type of the disease, I do believe that the benefits as an anti-inflammatory are worth the low cost.

Barry