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Diagnosed 03/2015. One sided limb onset (arm) sporadic PMA/MND - now 50% left arm and 90% right arm, plus other bits including left shoulder– Campaign contact Winchester and Southampton branch, and trustee of the Association
"Things turn out the best for people who make the best of the way things turn out"
A humble word of caution from non medically trained me. A high percentage of people with MND who also have a fungal infection would not necessarily mean that fungus is a cause of MND. As stated previously a compromised immune system would be more susceptible to infections of all kinds, including fungal. Care ought be taken before cause and effect is assumed. Lynne
Does anybody have access to the conference video recording or whatever they have that would allow us to view this at our leisure?
And Barry I realised I did not respond to your message about supplier- my supply came from Naturally Healthy Concepts in Wisconsin - https://www.nhc.com
Warmly
Andy
Diagnosed 03/2015. One sided limb onset (arm) sporadic PMA/MND - now 50% left arm and 90% right arm, plus other bits including left shoulder– Campaign contact Winchester and Southampton branch, and trustee of the Association
"Things turn out the best for people who make the best of the way things turn out"
Just to clarify: Curcumin isn't an antifungal supplement, but is an antiinflammatory and an antioxidant.
Indeed!
There does seem to be some confusion in the ALS community in the US of A about this as, of course, both are concerned with gut flora in some way or other.
And Dr Bedlack is clear - he believes it is the anti-inflammatory/antioxidant effect that is efficacious as far as I can see.
At least this is what I am hoping for!
Warmly
Andy
Diagnosed 03/2015. One sided limb onset (arm) sporadic PMA/MND - now 50% left arm and 90% right arm, plus other bits including left shoulder– Campaign contact Winchester and Southampton branch, and trustee of the Association
"Things turn out the best for people who make the best of the way things turn out"
The packaging recommends taking two tablets twice a day for a week, presumably to put in some sort of zap and then going back to 1 twice a day for the foreseeable future.
The only thing I have noticed is a change in fasiculation, which of course may have nothing to do with taking theracumin - the bicep in my left arm was really thumping and also my legs were twitching last week to the extent I was discussing with my wife the possibility of getting some drugs to control my fasiculation so that I could sleep - and today this has really seems to have calmed down.
Of course this could simply mean that one or more nerve fibre(s) has/have now died or it could mean this stuff is having some effect.
We live in hope!
Warmly
Andy
Diagnosed 03/2015. One sided limb onset (arm) sporadic PMA/MND - now 50% left arm and 90% right arm, plus other bits including left shoulder– Campaign contact Winchester and Southampton branch, and trustee of the Association
"Things turn out the best for people who make the best of the way things turn out"
I'm also taking it, but am doing so for its anti-inflamatory properties, rather than to improve my physical disabilities (I'm too far gone but obvs any plus would be a huge Brucie Bonus !!!!) I have noticed a reduction in the frequency I now need to take Ibuprofen for pain - which is very welcome indeed.
I believe Dr Bedlack recommends taking 2 capsules every day for the 6 months - you may want to check.
Best of luck.
Love Ellie.
Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.
Interesting that is having that effect on your painkiller use – I assume there is nothing else going on in your life that has resulted in you being more pain-free?
I believe Dr Bedlack recommends taking 2 capsules every day for the 6 months - you may want to check
I just double checked the packaging - it does suggest, as I said, to take double the dose you mention for a week to start with and then go down to one per day, which is what I am now taking
Warmly
Andy
Diagnosed 03/2015. One sided limb onset (arm) sporadic PMA/MND - now 50% left arm and 90% right arm, plus other bits including left shoulder– Campaign contact Winchester and Southampton branch, and trustee of the Association
"Things turn out the best for people who make the best of the way things turn out"
No, Andy, I've not done anything else which could potentially affect my pain levels. As an FYI, my pain is largely mechanical pain caused by weak neck muscles and it is this pain which has reduced as a potential side effect of taking Theracurmin. It has long been touted for joint pain anyway, so this could explain the reduction.
Dr Bedlack's Theracurmin trial design is for 6 months of "Theracurmin (Integrative Therapeutics) at 1 BID" - where BID is doctor speak for twice daily, so is different to the dose recommended on the container.
Love Ellie.
Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.
Diagnosed 03/2015. One sided limb onset (arm) sporadic PMA/MND - now 50% left arm and 90% right arm, plus other bits including left shoulder– Campaign contact Winchester and Southampton branch, and trustee of the Association
"Things turn out the best for people who make the best of the way things turn out"
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