w-five last night on tv

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w-five last night on tv

Postby robbie » Sun Feb 22, 2009 7:12 am

Had ms for 24 years now.
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Postby robbie » Sun Feb 22, 2009 8:05 am

read his blog SHAM WOW
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Postby robbie » Sun Feb 22, 2009 8:59 am

it is criminal to profit from the fear that we all have and it's not just in China
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My take on article

Postby lyndacarol » Sun Feb 22, 2009 10:30 am

Robbie -- thanks for starting this thread by posting the article. My take on this article, as I have found in many books and other personal stories, is that a person with MS who has progressed even to a wheelchair CAN get back to a normal life.

The crux of all these phenomena is finding the common element that was changed and allowed the dramatic improvement. What REALLY changed in the life of the author of The Gold Coast Cure? What REALLY changed in Jennifer Molson's body (The experts think the treatment "works by killing off the damaged immune system with chemotherapy...")? In Molson's case, I am not sure the experts know ALL they killed or changed in her body!
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Postby robbie » Sun Feb 22, 2009 10:42 am

hi Lynda I guess what I’m trying to say is that no matter what the result of symptom changes they say is caused by a drug , any of the drugs ms can make it happen on it's own so it seems to be the perfect situation to say or believe what isn't really so.
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Postby mrhodes40 » Sun Feb 22, 2009 1:25 pm

any of the drugs ms can make it happen on it's own so it seems to be the perfect situation to say or believe what isn't really so.

Yes, I believe you are right there. It is easy to equate effect by working backwards and saying you can know the cause based on that, like this "Because I seem better after chemo, therefore MS *IS* autoimmune and it worked the way I think it did" Chemo also causes profound system wide changes in the body --just one small example is anemia, which may have a positive effet on MS as anemic mice do not get eae. You can't know without a doubt that "the anemia effect" is not the reason people "seem" better.

note that Dr Freedman said "
Of the 18 patients who have undergone the treatment so far, Molson was the first to show such drastic improvement. The procedure had stalled progress of the disease in many patients, but until Molson, Dr. Freedman had never seen a patient actually get better

OK, whatever ails Molson has obviously greatly improved and seemingly reversed, but that is not the norm. In the Tysabri trials one of the patients who died did not turn out to have MS, remember that?

In fact from HERE
The potential of autologous hematopoietic cell transplantation
has been of considerable interest in recent
years following demonstration that this procedure could
protect against experimental autoimmune encephalitis
in rodents [11]. Pilot studies have revealed that such a
treatment is beneficial in reducing lesion activity and
neurological disability in patients with severe progressive
disease [7, 19], although the procedure is not without
risk.We have recently had the opportunity to evaluate
the brains of four patients who had received
autologous bone marrow transplants in North America
and subsequently died.
Autopsy samples from these patients revealed that in
all cases there was an almost complete absence of inflammatory
markers in the brain, notably of T cells. On
the other hand, there was significant staining for amyloid
precursor protein (APP) inclusions, a marker of
acute axonal damage (Fig. 5). This suggested that even
though inflammation had been abolished, neurodegeneration
was still proceeding in the brains of these patients,
and thus that neurodegeneration was not a direct
consequence, at least in the short-term,of inflammatory
damage to the nervous system.These data are consistent
with the observation from MRI studies that the rate of
brain atrophy is high in patients who have received
hematopoietic stem cell grafts in spite of an apparent
complete cessation of inflammatory lesion activity [10].

A possible explanation for these discordant effects on
inflammation and neurodegeneration would be that
suppression of the normal T cell patrolling of the nervous
system may interrupt correct regulation of microglial
function, allowing microglia to release toxic
substances indiscriminately which can in turn injure

So clearly the pathology lab is showing some very negative effects on the brain tissue as a result of the chemo part of the stem cell transplant. Note the writer is not a person who does this treatment but rather a pathologist who looked at brain tissue AFTER such treatment and is documenting the atrophy--which honestly they already knew from MRI was happening in these ASCT patients, but they don't talk about that part.

Atrophy is the hallmark of progressive phases of the disease. The fact that ASCT with chemo results in marked MRI visible and autopsy confirmable atrophy and degeneration ought to be considered a big cautionary tale; the long term consequences for these patients needs to be well documented before people run off and get this treatment. That people "seem" better is only half the story.

Another on stem cell transplant in review from HERE
Multiple sclerosis is a relatively common and seriously disabling disease of autoimmune pathogenesis, for which there is currently no cure. Available therapies include immunomodulating agents and standard-dose immunosuppressants, which may be helpful but are not curative. Recently, studies in animal models have indicated that control of autoimmune disease can be obtained by high-dose immunosuppression followed by hematopoietic stem cell transplantation (rescue). Autologous transplants for severe and refractory multiple sclerosis were proposed in 1997 and have been performed ever since in selected patients and in the context of phase I/II trials. To date, more than 200 patients have been treated worldwide, and similar results were obtained in different centers: high-dose therapy suppresses inflammation in the brain to a degree superior to any other conventional therapy and seems to delay significantly clinical disease progression. There is, however, a procedure-related mortality risk of 1.5-5%, requiring careful patient selection before transplant. The treatment should be reserved for patients having high chance of response, i.e., young patients with low disability scores but rapidly progressing disease, having inflammatory rather than neurodegenerative changes in the central nervous system. The mechanism of action of transplantation is unclear. The initial concept of immune ablation by high-dose therapy and reconstitution of normal immunity from transplant-derived lymphocyte progenitors has given way to the concept of "resetting" the immune system and of bringing the disease to a lower level of activity. One could also speculate on a tissue repair effect, given the ability of human hematopoietic stem cells to migrate also into the central nervous system. The clinical effect of transplantation remains to be demonstrated in a randomized study. The Autoimmune Disease Working Party of the European Group for Blood and Marrow Transplantation has launched such a trial, comparing transplantation to the currently best available therapy, i.e., mitoxantrone, and in about 5 years we should know whether transplantation offers more than the benefit of a transient immunosuppressive effect.

As for the dude getting the Chinese cord blood stems, it may be useful from the standpoint that it is shown that stem cells calm down the immune system and increase self tolerance in some way we do not understand.

My theory on that is that the stem cells which are like little healing emergency cells rush to everywhere that needs healing (and I mean all places; like even your athlete's foot) and send out all the necessary chemokines etc to get the healing started in that area, which also results in an overall message to the immune system of "all clear" via messenger cells then results in dampening of overall immune activity since all people all the time have some areas in repair.

It is stem cells that enact healing in your body right now who ever you are, but you normally have a only tiny pecentage of your cells as stem cells: when you get a giant bolus of them all at once way out of physioloigcal norms like that, it calms things down.

I believe that it might possibly be of therapeutic benefit for people to get a "hit" of stem cells like that for the purpose of calming the immune system, and such a therapy might be useful in MS, but if it does work that way then it will be TEMPORARY and people will need 35,000 dollars to do it again, maybe every 6 months. This might be perfectly legitimate treatment:cheaper than tysabri and less toxic long term, but I'd use autologous stems (grown from your own marrow) not cord blood. You don't know what diseases might lurk in those blood pools hepatitis? hope not but possible.

The additional item of that which could have some role, undetermined at this time, of healing a little bit in the brain itself. Regular umbilical cord stem cells are not likely to regenerate nerves themselves because you need specifically mesenchymal stem cells for that, but if you have damage in the brain, say like as described in the theory of Zamboni, where in iron is leaking in, the stem cells may heal the BBB and close it down, thus suttting off any damage from that mechanism and calming the actual immune activation in THAT area. Tha's a nother way things could seem better without MS itself being altered via stopping autoimmunity.

But as Robbie pointed out you can't tell by results if it is working the way you think it is or not, and stem cell treatments with ablation, and those with radiation in particular, are so terribly system wide impactual, that there might be many possible mechanisms for seeming success, so it is incredibly naive to say that "this treatment "worked" therefore the cause of MS "is"........."
just MHO
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Postby jimmylegs » Sun Feb 22, 2009 6:22 pm

this post made me wonder if TIMS ever makes it into the news hehe
odd sx? no dx? check w/ dietitian
DRI=MINIMUM eg bit.ly/1vgQclQ
99% don't meet these. meds/lifestyle can affect levels
status can be low in ms & other cond'ns
'but my results are normal'. typical panels don't test all
deficits occur in 'normal' range
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