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krisp
3 years ago

Hey @andysot
I don’t know how I missed this?! I’ve done a bit of reading and there’s reviews on it from people with Ms and other neuro conditions saying it worked which I’m always skeptical of.

But then I found this http://www.ncbi.nlm.nih.gov/m/pubmed/24055980

Admittedly it’s in a mouse model of EAE but it’s the principle that they do a lot of the pre human testing on, I also know Barts were talking about mitochondria a little while ago.

Even the guys at OMS seem to base a lot of their diet on a similar principle

I’ve just ordered some now, I’m trying everything else!

Thanks Andy


krisp
3 years ago

Andy I’ve also asked the question on Barts community, they released a blog regarding mitochondria having an effect on neuro degeneration and from what I’ve read, MitoQ helps this somehow.


andysot
3 years ago

Hey @krisp, cheers for your reply. I, like you spend a lot of time researching and this product really seems to have some leg! It may be silly to have done so but I’ve taken a bit of a gamble and ordered a three month supply; a) so I can see whether prolonged use is required to see a difference. Like all supplements, short term use is often not long enough and b) to take advantage of the free shipping as its c.£6 otherwise!

Let’s hope it works. I haven’t read there are any, but hope there are no conflicts with this and DMDs as I’m due to start Tysabri next month!

Andy


krisp
3 years ago

It all looks good the only thing I did find was it could excite thre immune system somewhat but I don’t think there’s any proof in it
I think the enzyme is available in food too so you never know you could already be getting some, it’s all to do with mitochondria from what I can see which is implicated in neuro degeneration


lina
3 years ago

I bought some but never tried it yet maybe will try now off for 2 weeks from work.

Lina


andysot
3 years ago

@krisp @lina; nothing to lose by trying it!!

Emailed my Neuro about it and will let you know what she says!

Stay positive guys!!


krisp
3 years ago

Yeah @andysot let me know what she says and @lina, might be interesting for you both, I asked on the Barts London blog about MitoQ in a mitochondria blog and they replied with this

It is sold as a beauty product to stop wrinkles

It was shown to be an immune modulator in EAE at 200 to 4000 times the human dose

Water at 5 times the recommended dose stops EAE.

Helping mitochondria can stop neurodegeneration as you will see soon….

Will MItioQ be developed for MS, do the right EAE experiments first and you may get the answer,but I suspect you have the answer already


andysot
3 years ago

Wow @krisp…Mindblowing! Wonder if the reason it’s not a mainstream treatment is because the likes of us can get hold of it for £40 a month? #pharmaceuticalscepticism

Time will tell….


krisp
3 years ago

@andysot
Tell me about it, I’d say there’s somethting coming up with the mitochondria angle too judging by what he’s said there
There’s also mitochondria in the muscles too which is apparently where Ms attacks first with regards to the muscle, it can’t hurt to try it
Only problem is, my daily pill intake is getting ridiculous, I’m half man half vitamin


stumbler
3 years ago

@andysot , the reason that it’s not a mainstream product is because it’s so cheap!

To become an accepted treatment, recommended by Neurologists, it will have to complete a set of proper clinical trial. These cost money and if the final product is cheap, then no-one can cover their costs.

It just becomes a bit of a stalemate. It might work, but there’s no profit in it!

LDN (Low Dose Naltrexone) is a point in case. It works for some, but Neurologists won’t recommend it.

It’s one of the ugly faces of capitalism! 😕


andysot
3 years ago

Ditto @krisp, my daily supplement list is ridiculous but I’ve made it 8 years since diagnosis with just diet, exercise and supplementation….

My point exactly @stumbler !!!


krisp
3 years ago

@andysot
That’s gotta be good news? I’ve just started the diet today, was interesting going to a restaurant trying to find something Paleo friendly and walking out with some leaves and cucumber, lovely

And @stumbler, I know exactly what you mean, I would like to think it’s Raltegravir that will be what sorts it or another type of retroviral
Just look at stomach ulcers!!
For years people had risky surgery to remove these, then two Australians rightfully now Nobel prize winners, said screw this it’s simpler than that! And treated it with an antibiotic!! It’s criminal


krisp
3 years ago

@andysot

Try reading this! This will interest you big time

http://m.huffpost.com/us/entry/2258056

It seems a lot of the MS food followings are based on mitochondria support! There’s skmething in this definitely


andysot
3 years ago

Yeah @krisp, I know all about Dr wahl, I’ve been following a strict diet for years but the time has come for a bit more help, alas tysabri!

I’ve been on a stem cell trial (STREAMS) for the past year and was also offered the chance to trial Raltegravir at the same time….

MS is definitely coming closer to being overcome. Got a feeling we’re on the cusp!!


krisp
3 years ago

@andysot
What was the stem cell trial? Any good? Did you try the Raltegravir?


andysot
3 years ago

Was testing the safety and effectiveness of mesenchymal stem cell infusions. It works but you need regular infusions for it to really work, I only had the one. Google STREAMS Trial….

I didn’t try the Raltegravir, had to pick that or STREAMS…@krisp


andysot
3 years ago

Won’t get the results for a while and it was also double blinded…it’s opened doors for me though so it’s been a positive experience. Only 13 patients took part in the UK.


krisp
3 years ago

Sounds pretty good? I’m sure the MSC therapy is the one they’re aiming at can also promote remyelination? Correct me if I’m wrong

Good to see that they’re looking at s couple of things too! Was this through Barts? I know they’re trialling Raltegravir


andysot
3 years ago

Spot on @krisp….

No it’s through imperial. It’s a phase 2 trial so still early days but the future is bright….


mary-annpearson
3 years ago

I am presently thinking of going abroad for stem cell because i am desparate. It seems stem cell is getting closer to safe and routine us. What is your experience


andysot
3 years ago

@mary-annpearson it’s a great treatment but we are behind the rest of Europe when it comes to MS so going abroad for treatment is a decent option.

My experience has been good but the main aspect of my trial was to test safety. It definitely seems safe but you need regular infusions which cab be very expensive….look up HSCT, which is basically a stem cell transplant. The treatment is very aggressive and very expensive but it has the potential to ‘switch off’ MS and stop it evolving…

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