I was interested in the claims made in Jenna's post on Glyconutrients,
(http://www.vitalcarbs4life.com/ http://www.glycoscience.org/) but
felt it sounded a bit like a sales pitch. I did a web search and found
many sites selling the same thing with the almost the same wording as
one another. It sounded a bit like a pyramid selling scheme. None seem
to actually describe the product they're selling in any details, or give
prices or ingredient lists etc. but all make these really huge claims.
I also came upon this site, which gave a different perspective, and
refuted claims about some of the studies:
http://www.ratbags.com/rsoles/comment/mannatech.htm
http://www.ratbags.com/rsoles/comment/mannatech060910.pdf
Having said that though, Jenna, I'm not disputing your claims, and would
be very interested in any treatment or supplement that actually works.
Like everyone else here, I'd love to be cured or at least to find
something that relieves the suffering a bit (or a lot!). I have noticed
since being struck down by TM that I sometimes get huge sugar cravings
and eat lollies when I do. I never used to have a sweet tooth, but now
I do. I don't pig-out on them all the time, (because my legs are
already wasted heaps from a yr in a wheelchair, and I don't want to have
to put on extra weight for them to have to try to hold up, as I'm now
managing to walk a bit now with a Canadian crutch), but the
sugar-craving is something I've noticed. I wonder if that's something
to do with the claims of the sites on the Glyconutrients about sugars?
Maybe it's just coincidence, but I did wonder if my body may be needing
more sugars or something, when I had these real cravings for something
sweet.
One doctor I saw while having a scan done suggested to me that fish oil
supplements and glucosamine are useful in demylenating diseases, as they
will help protect it in some way. I take the fish oil, as I'm a
vegetarian (not any more I guess :), and think maybe I've been missing
out on something in the diet. (Although no way I could bring myself to
eat meat though).. But I haven't tried the glucosamine yet as it's too
expensive, and I'm only barely struggling to make ends meet as it is.
Has anyone tried the glucosamine? None of these things is actually a
'cure' or anything, but just maybe a maintenance thing to try to keep as
well as possible, under the circumstances.
I do get a bit worried at some of the quackery that targets sick people,
who are desperate for cures or relief, and are probably an easy target
for unscrupulous people to make money out of. But if anything would
give some relief, then it would be great. I just don't want to be
ripped off, because it's so hard to manage with being sick anyway.
I agree with others that have written in here, with the pain. I've
found the constant pain is the worst part of this. My back pain just
won't go away. Some days it's not as bad as others, but it's always
there. I find when I've tried to push myself to do more, I tend to pay
for it over the following days with heaps more pain and fatigue. After
the back pain, the legs and feet are next worst, with the pain and
frozen feeling and banding. But all my joints seem so incredibly
painful at times too. It's just relentless. Then there's the spasms
and twitching legs; and not being able to go to the loo without heaps of
laxatives every day, or to even push properly. I'm taking 200mg
Tramadol morning and night for the pain, and Neurontin (which I can
barely afford, so only take a little, as it's not on the PBS for
neuropathic pain here, and costs almost $100 a packet at most chemists),
and Baclofen for the spasticity, (which has made a huge difference for
me). I still sometimes need to take Endone in the middle of the day if
the pain becomes too severe. I've tried going off the Tramadol, as I
don't want to become dependant on it, but the pain is just unbearable
when I do. 200mg Tramadol is the biggest dose available and is long
acting, and at least gives me relief. It's been over a year since I was
struck down by TM, and I would have hoped that the severity of the pain
in my back might have subsided by now, but it's still really bad.
Well, thanks for listening.
Kathryn Keen
NSW Australia
(where it's sweltering hot; the weather forecasters have predicted
46deg. C (about 115 deg F) heat on Sunday, and there's fires raging out
of control in many areas across the country, and our town's water supply
is now down to 13% due to drought, and with level 5 water restrictions
likely to be implemented in March if we don't get heaps of rain in the
catchment in that time).
