2008-07-03T22:42:46Z http://alliesvoice.com/comments/atom.aspx Quick Blog tag:alliesvoice.com,2008-07-02:1165919 BetterCell http://bettercell.blogspot.com 2008-07-02T20:12:22Z 2008-07-02T20:12:22Z I remember what it was like when Vitamin E came to everyone's attention here in the USA.
The response from the Medical Community was to label anyone who took it, a *Health Nut* and label it as a Sex Vitamin since it was not approved for use by anyone within the Community.
I did not wait for anyone with a long white lab coat to sanction its approval.........I took it!! and waited to see if it indeed had a positive impact on my existing sexual vigor. It took about 10-15 years for the Medical Community to finally say something good about it after first coming to everyone's attention.
I reaped the benefits by choosing for myself as well as trusting in myself.]]> tag:alliesvoice.com,2008-07-02:1165723 Sanktpauli 2008-07-02T18:29:59Z 2008-07-02T18:29:59Z tag:alliesvoice.com,2008-07-02:1164820 Brent 2008-07-02T11:58:53Z 2008-07-02T11:58:53Z
I read your recent comments. I’m glad that the new protocol for retinopathy has offered you some hope to regain/retain your eyesight. After a period of reflection, I wondered why you don’t take the GUILT you feel about being a ‘bad’ diabetic and turn this scenario around. Considering that bad medical care, bad insulin protocols, bad advocacy organizations (that don’t stand up for you) and bad government (which doesn’t regulate for the best possible drugs and paraphernalia to manage a disease) . . . you can easily see where your focus and your anger . . . but not GUILT should reside.

Diabetics are one of the few disease-victims where the patient receives the blame for not only causing his/her disease, but also any complications that may arise from poor management which, as I said above, relates directly to poor medical care. The day our advocates actually speak up for US, listen to US and understand that life is not normal walking around with diabetes, maybe then, we can make progress.

I can’t imagine what your life has been like over the last 14 years, including the pressures of family . . . but I am happy to see you have joined Allie’s Voice to at least be able to recognize you are not alone . . . and you are not a bad diabetic.]]> tag:alliesvoice.com,2008-07-01:1163463 BetterCell http://bettercell.blogspot.com 2008-07-01T21:47:06Z 2008-07-01T21:47:06Z As all of us now know, there is not much available to us besides GM Insulin, ACE Inhibitors, Statins as far as Management is concerned. I have always been interested in Neutraceuticles, herbs, good nutrition and exercise to further prevent the ravages of Diabetes and its Complications.
Here is a current article which just appeared in Acta Diabetologica on the benefits of Thiamine and Benfotiamine which Brent and Sanktpauli are already familiar with:
TY - JOUR
JF - Acta Diabetologica
T1 - Effects of thiamine and benfotiamine on intracellular glucose metabolism and relevance in the prevention of diabetic complications
UR - http://dx.doi.org/10.1007/s00592-008-0042-y
M3 - 10.1007/s00592-008-0042-y
AU - Beltramo, Elena
AU - Berrone, Elena
AU - Tarallo, Sonia
AU - Porta, Massimo
N2 - Abstract  Thiamine (vitamin B1) is an essential cofactor in most organisms and is required at several stages of anabolic and catabolic
intermediary metabolism, such as intracellular glucose metabolism, and is also a modulator of neuronal and neuro-muscular
transmission. Lack of thiamine or defects in its intracellular transport can cause a number of severe disorders. Thiamine
acts as a coenzyme for transketolase (TK) and for the pyruvate dehydrogenase and α-ketoglutarate dehydrogenase complexes,
enzymes which play a fundamental role for intracellular glucose metabolism. In particular, TK is able to shift excess fructose-6-phosphate
and glycerhaldeyde-3-phosphate from glycolysis into the pentose-phosphate shunt, thus eliminating these potentially damaging
metabolites from the cytosol. Diabetes might be considered a thiamine-deficient state, if not in absolute terms at least relative
to the increased requirements deriving from accelerated and amplified glucose metabolism in non-insulin dependent tissues
that, like the vessel wall, are prone to complications. A thiamine/TK activity deficiency has been described in diabetic patients,
the correction of which by thiamine and/or its lipophilic derivative, benfotiamine, has been demonstrated in vitro to counteract
the damaging effects of hyperglycaemia on vascular cells. Little is known, however, on the positive effects of thiamine/benfotiamine
administration in diabetic patients, apart from the possible amelioration of neuropathic symptoms. Clinical trials on diabetic
patients would be necessary to test this vitamin as a potential and inexpensive approach to the prevention and/or treatment
of diabetic vascular complications.

ER -]]> tag:alliesvoice.com,2008-07-01:1162533 Panjo http://www.myspace.com/panjo 2008-07-01T14:59:51Z 2008-07-01T14:59:51Z tag:alliesvoice.com,2008-07-01:1162338 BetterCell http://bettercell.blogspot.com 2008-07-01T13:45:43Z 2008-07-01T13:45:43Z has written an extensive article today about Diabetes. It is mostly geared to IRD(aka T2DM) but still a good read with video and a comment section included.
My comment appears as #33.]]> tag:alliesvoice.com,2008-07-01:1161712 Brent 2008-07-01T08:45:41Z 2008-07-01T08:45:41Z
With the help of an investigative reporter in Tampa, Florida, we put together a series of TV commentaries which explained the plight of people with diabetes who could not use rDNA insulins. By the time the third segment aired, the investigative reporter and the station had been pressured by Lilly to discontinue all efforts on our behalf. There was hope that this local Fox station would then run a well-done piece of investigative reporting nationally. You know what happened with that idea!

This same group of individuals, along with many others over the years, have tried the many suggestions you outline. In fact, with excellent support from scientific literature, we have asked regulatory agencies to take another look at the safety of these products. We have contacted media (from Jeff Swiatek at the Indianapolis Star, David Wills at the L.A. Times to every major television network). We have contacted celebrities ranging from Mary Tyler Moore, a former Miss America, celebrity athletes, Halle Berry, etc. We have contacted published, investigative authors like John Cornwell (The Power to Harm) because they already have an audience. We have contacted people like Michael J. Fox and other disease-specific spokespeople, suggesting formation of a coalition to give voice in opposition to today’s 10-minute-medical wonders. We’ve contacted legislators, time and again; we have testified in Washington; we have sat down in legislators’ offices; and we have even tried to make inroads at the state level.

The best example I can give you of what happens with any life-threatening disease is a recent contact from a person in the AIDS group. The moment it was discovered that life could be extended with therapeutic drugs, the research in AIDS (for a cure) became much less important and R&D money and focus shifted to therapeutic drugs—not a cure. Does this remind you of another disease?

Charities like ADA and JDRF, originally well-intentioned advocates, have become Astroturf mouthpieces for industry. They depend on corporate dollars to sustain their own corporatism. Consider JDRF--originally formed by parents who sought a CURE for their children--has transformed its original CURE mission. The children whose parents sought a cure now hear that a cure is no longer ‘around the corner’ but instead, ‘on the horizon.’ Is that progress?]]> tag:alliesvoice.com,2008-06-30:1159069 Scott 2008-06-30T10:40:29Z 2008-06-30T10:40:29Z
He writes that the physician-economist team calls for a breakup of the pharmaceutical industry into separate manufacturing and R&D parts. His other book review was of David Michaels' "Doubt Is Their Product" and Thomas McGarity and Wendy Wagner's "Bending Science", all of which argue that the corporate influence on medical research skewer corporate campaigns to undermine sound science. Therefore, the idea that Finkelstein & Temin's thesis may, in fact, provide a potential solution.]]> tag:alliesvoice.com,2008-06-29:1157703 Sanktpauli 2008-06-29T18:09:01Z 2008-06-29T18:09:01Z
Benfotiamine is chemically related to thiamine but is not just a concentrated version of it, though it promotes concentration of thiamine around nerve cells. Its most dramatic effect is in disrupting the pathway from hyperglycemia to advanced glycation endproducts and thus stopping complications before they can even start. In theory, if benfotiamine works, it would be possible for diabetics to let their blood sugars run to any level they want to guarantee they would never experience hypoglycemia, and then still avoid the complications of hyperglycemia by disrupting the metabolic pathway that produces them. The only limit on the blood sugar level would then be the danger of hyperosmolar coma from too much sugar in the blood, but since this does not set in until a blood sugar level of around 600 is reached, it should be easy to avoid.

Given the exhausting, life-disrupting, injurious, and extremely dangerous nature of attempting to stop complications by strict blood sugar control, why not let a few pills, having no known side-effects, taken twice a day replace this usually futile effort? Remarkably, every endocrinologist and diabetologist in North America I have discussed benfotiamine with has been totally disinterested in it, while every patient is wildly enthusiastic about it. So much for the much-touted 'therapeutic alliance' which is supposed to exist between doctor and patient!]]> tag:alliesvoice.com,2008-06-29:1157614 Cashpotato http://www.alliesvoice.com 2008-06-29T17:14:48Z 2008-06-29T17:14:48Z
Can change ever happen? That depends.

First, the diabetic public has to realize that there will be no Iron Man or Incredible Hulk jumping on the scene to "save them" and bring back animal insulin or bring to market c-peptide or a cure.

Second, the diabetic public has to realize that the change cannot come from big pharma. Doing so would open them up for enormous liability. Change has to come from within the diabetic community and from a start-up pharmaceutical.

Third, the diabetic community has to get organized and speak up with one voice. Unite and fight for your rights. This is a fight for your life. Until you do, nothing will change. Think about how insects attack their enemies - swarming ants or bees can fend off a much larger attacker by uniting their resources and fighting together for their lives.

What do I suggest?

1) Brent wrote to Allie "You need a bigger megaphone." I agree. I believe in the concept of "six degrees of separation." There have to be readers of this site who have contacts in the media (TV, radio, magazines, newspapers). Get in touch with them and have them read this site. Have them contact Allie. Give her access to a bigger megaphone (if that's ok with her).

2) Find celebrities to support change. Celebrities are publicity magnets. Jenny McCarthy turned on the spotlight on autism. Michael J Fox turned on the spotlight on Parkinson's. Type1 diabetes has no high profile promoter. All the diabetic celebrities I know are paid to promote a product or service. They’ve figured out how to mosey up to the diabusiness trough and get paid for their disease.

3) Finally, when the time comes that someone is visionary enough to figure out how to bring animal insulin or c-peptide to the US market, make sure you support that company. It will be an outsider fighting the odds. It will have big pharma to fight off. The charities will be against it as they get pressured by their contributors to denounce it. The FDA with its notorious red-tape and long standing cozy relationship with big pharma will hamper its success. Finally, there will be the doctors, diabetes educators and diabetics who need to be reeducated to the new (old) insulin and its benefits. From a pure profit perspective, this is too difficult. For this to succeed, the diabetic community will have to support it from its birth - "it takes a community to bring about real change."

The winds of change are blowing. I am constantly hearing from diabetics "what have you done for me lately" to their doctors and drug companies. The real question should be "what have I done for myself lately". Speak out. Speak up. Fight back.]]>