Dormant viruses triggering SALS?

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... and sorta scary.
 
Quite the read. And yes, scary. Thanks for sharing the link, Nikki.
 
I think someone should tell Mulder and Scully.
 
My daughter Carrah reckons tell the guys from Supernatural. (This is the 21st century I guess).
Too bad I'm just back from Sydney, not just going. I would ask my neuro about it.
God bless, Janelle x
 
Really fascinating! And reminded me of a question that's been lurking on my mind--it seems virtually all the mice being used in the studies and drug tests have been SOD-1, yet less than 10% of human ALS is SOD-1 related. We already know ALS is heterogenous, so why is all the early testing dependent on SOD-1? Could that be part of the delay in finding a better treatment or cure/prevention? It seems like a drug will be found that looks promising in the lab (mice), but then is not that effective in humans. Maybe because all the mice are SOD-1 but less than 10% of the humans? Just been wondering...
 
They had to use sod1 mice because that was the only ALS mouse model that existed. They could not make other models because they had not identified any other causes. There are now mouse models for C9 and probably other genotypes and there are c9 zebra fish too! I think everyone knew the drawbacks but they worked with what they had. There are more options now different mice and also IPS studies which can look by used from any PALS.

I think there may be valid reasons why sometimes animal models are needed so IPS technology won't replace them completely. and I was told a while ago the FDA wanted animal studies before approving something for new to human trials. They did not at that time consider ips cells sufficient trial. I don't know their current stance
 
Thanx for sharing this. I was going to post it once I got out of all my meetings but you beat me to it :)
 
You're so well informed, Nikki. Thank you for answering my wondering/wandering mind!

While in Boston I was talking with someone who was describing the mice being used in some of the various studies (how they get them, test them, etc.) and it was all SOD-1, so I didn't know others were using the C9. I'm glad to hear that.

I was also thinking specifically (so I should not generalize) about a PALS who had had very good results in one of the drug trials in 2010-2011; however, only a small subset of participants did, so the company did not pursue further testing. Her husband was telling me they were so frustrated they bought stock in the company so they could go to the shareholders' meetings to implore the company president to continue.

That's one of the reasons I find such hope in the iPS technology--might different treatments for different subsets work?

OK now. I'll reign in my wandering mind before I lose it completely. Last time I did it was really hard to find again. :) (Some who know me well might tell you I never did. HaHa!) Thanks again, Nikki!
 
I was just about to post this. So my question is, will a neuro prescribe the HIV drug and see what it does, or no? I;m just curious! Thanks for the info, as always, Nikki!
 
There was an antiviral trial years ago and it appeared to speed up progression. This is interesting and something to be explored but they only looked at 11 PALS.
 
> antiviral trial ... appeared to speed up progression

Holy crap. The downside of drug trials!
 
It is unfortunately the risk we take and part of the reason that there are not a lot of support among neurologists for the GM 604 movement I believe. I am not sure who here remembers lithium? There was a small Italian trial that looked promising. A lot of PALS got it off label and the reports were not nearly as rosy and further formal trials showed in fact the lithium arm did worse.
When you get a prescription for an approved and tested drug there are risks. I think our natural hope makes us minimize risks. If anyone has read the story of the Heywood brothers they were hoping to try some kind of intervention ( genetic manipulation?) at one point as a desperate effort but just before they went for approval a trial for another condition that used similar technology was halted because a patient ( a young man 18-21 who had very mild disease and was participating for beneficient reasond) died. There was definite blame to the trial investigators, a couple of prior patients in their series had had some minor problems yet they continued, increasing the dose as planned in their protocol. But even when everything is done right there is a risk as well as a possible benefit to trials. That is not to say trials are bad and we should avoid them.
 
I'm sure this sounds crazy, but after I read the story I started to look at my essential oils.

Geranium has been shown to disable HIV1 in vitro and thyme, tea tree and melissa (lemon balm) can fight herpes, so I'm going to start diffusing them in her room. It cannot hurt, IMO.

if nothing else, it will smell like roses in there...
 
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