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<title>Give me a C, give me an R, give me an EST</title>
<link>http://www.healthdiaries.com/scleroderma/crusaders/</link>
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<copyright>Copyright 2007</copyright>
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<item>
<title>Starfish - Scleroderma Breakthrough</title>
<description><![CDATA[<p>"The other day I happened to catch part of a TV interview with an 80s rock star, and he was talking about how his life didn't mean anything until it had descended about as low as it could possibly go. He said sometimes, in order to go up, you've got to go down. I've never had to deal with the pressures of fame and fortune, but on a smaller scale, I think I know what he meant." by Jody <a href="http://www.amsa.org/humed/hv/0804visual1.cfm">"The Healer's Voice"</a></p>

<p>____________________________</p>

<p>There was news this week that you had to listen very carefully for and, if you heard it, it rocked your world. <a href="http://www.dukehealth.org/news/9348?from=RSS">Duke University</a> released their findings about the cancer drug Taxol and Scleroderma. This release came closest to anything I have ever seen about exactly what is happening to my body and it offered hope for a cure. </p>

<p>New Clues into Causes of Scleroderma<br />
10/31/2005</p>

<p>DURHAM, N.C. – Using a novel model for scleroderma, researchers from Duke University Medical Center have discovered two important insights into this devastating disorder – the anti-cancer drug paclitaxel (Taxol) may prevent the skin thickening and small blood vessel destruction that characterizes the disease. Also, they found that a patient's own immune system may actually interfere with body's inherent ability to repair damage, and in particular, damage to small arteries.</p>

<p>The researchers are so encouraged by the results of their experiments in mice that they are in the early planning stages of a clinical trial incorporating their findings in human patients with the disease.</p>

<p>Scleroderma is a chronic degenerative disease that afflicts more than 300,000 Americans, primarily women. The life-threatening disorder is marked by dramatic tissue damage including hardening of the skin, shrinking of muscles, and damage to organs and blood vessels. To date, physicians have been unable to determine what causes the disease, and the available few therapies, serve primarily to relieve symptoms, according to the researchers.</p>

<p>"These new insights are critical clues to understanding a dreadful disease that has so far been impenetrable in terms of what causes it, by what mechanisms it works and why patients get so sick," said cardiologist Pascal Goldschmidt, M.D., senior member of the research team and chairman of Duke's Department of Medicine.</p>

<p>The results of the Duke studies were published in the Nov. 1, 2005, edition of Public Library of Science Medicine. The research was supported by the Scleroderma Research Foundation, San Francisco.</p>

<p>"While we really don't understand what causes scleroderma, we suspect that it may be autoimmune in nature, or that the body's own immune system is involved," said Chunming Dong, M.D., lead author of the paper "Using a novel mouse model, we were able to get a much better understanding of possible mechanisms of the disease that we can use to potentially slow down or reverse the process of tissue damage."</p>

<p>One of the most characteristic effects of the disease is the gradual formation of fibrotic tissue, which leaves patients with disfiguring and painful tightening of the skin. Additionally, the disease tends to slowly destroy small blood vessels and capillaries, which are not only present in skin, but also in internal organs, leaving them vulnerable to function failure.</p>

<p>It is known that the excessive fibrosis seen in scleroderma patients is in part the result of an inappropriate activation of transforming growth factor-beta (TGF-beta), a substance called a cytokine that regulates the intensity and duration of the immune response. Too much TGF-beta activity can occur in the presence of destabilized microtubules, which give structural support to cells and are involved in the movement of genetic material during cell division. When microtubules become destabilized, a complex process ensues which leads to the excessive TGF-beta pathway activation, and consequent accumulation of collagen, the primary component of fibrotic tissue.</p>

<p>"We've learned in our previous studies that the treatment of individual cells with paclitaxel helps stabilize microtubules, thereby blocking the excessive activity of TGF-beta," Dong explained. "So in our latest studies, we were interested in determining whether or not paclitaxel would have any effect on tissue with scleroderma."</p>

<p>For their experiments, the Duke team used mice bred to have no immune system. They transplanted skin samples from humans with and without scleroderma onto the backs of these mice. Some of the skin samples were pre-treated for 30 minutes with paclitaxel.</p>

<p>"We found that the skin samples from scleroderma patients that were pre-treated with paclitaxel prior to transplantation significantly suppressed the activity of TGF-beta and lessened the formation of fibrotic tissue," Dong said.</p>

<p>Just as importantly, the researchers said, the mice that received the skin samples from scleroderma patients exhibited the beginning of new blood vessel formation, a process known as angiogenesis. These new blood vessels were of mouse, and not human, origin. Not only that, the researchers found that the level of angiogenesis in scleroderma skin samples was twice that of skin samples taken from patients without the disease, regardless of whether or not they were pre-treated with paclitaxel.</p>

<p>This finding of enhanced angiogenesis in scleroderma skin samples is important for two reasons, the researchers said.</p>

<p>First, one of the known side effects seen in cancer patients who take paclitaxel at much higher doses is an unwanted amplification of fibrosis and anti-angiogenesis. Since these two processes were not seen at the much lower doses of paclitaxel used in these experiments, the researchers are encouraged that paclitaxel might be safely used to benefit patients with scleroderma. Further studies are needed to determine optimum dosing, they said.</p>

<p>"Secondly, and just as importantly for our understanding of the disease, it appears that scleroderma skin still has the ability to send signals for repair, which includes the formation of new blood vessels, but for whatever reason, that repair does not occur in the patients, which it did occur in mice," Goldschmidt said.</p>

<p>Goldschmidt believes that mammals, including humans, have an inherent ability to repair damage to tissues. Specifically, according to Goldschmidt, specialized cells in the bone marrow known as vascular progenitor cells can be summoned to the site of blood vessel damage and contribute to the appropriate repairs. In scleroderma patients, this balance between damage and repair is skewed toward damage, with patients' smaller vessels slowly being destroyed and replaced by fibrotic tissue.</p>

<p>Going into the experiments, the researchers hypothesized that there were three possibilities to explain why the skin of scleroderma patients cannot trigger an angiogenic response: the skin is unable to send signals to the bone marrow; the signals are present but for some reason the bone marrow cannot respond; or lastly, the skin sends the signal to the bone marrow, which produces progenitor cells, but the immune system destroys the cells before they reach the site of damage.</p>

<p>"The results of this study rules out the first hypothesis, since the skin was clearly able to send the signal for angiogenesis, which did occur" Goldschmidt said. "The next step is to try to further define the underlying mechanism for the lack of blood vessels."</p>

<p>The researchers said that the answer is probably a combination of the last two factors.</p>

<p>"After the repeated vascular injury suffered by patients with scleroderma, it could be that the supply of progenitor cells becomes exhausted or that the produced cells are incompetent" Dong said. "Or, it could be that once the progenitor cells do leave the bone marrow, they are continually exposed to a noxious environment in the form of auto-antibodies so that they are unable to form new blood vessels."</p>

<p>Other members of the research team are, from Duke, Xialin Liu, Shoukang Zhu, and Tao Wang, as well as Laura Hummers and Frederick Wigley, Johns Hopkins University.</p>]]></description>
<link>http://www.healthdiaries.com/scleroderma/crusaders/archives/2005/11/starfish_scleroderma_breakthrough.html</link>
<guid>http://www.healthdiaries.com/scleroderma/crusaders/archives/2005/11/starfish_scleroderma_breakthrough.html</guid>
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<pubDate>Sat, 05 Nov 2005 11:51:52 -0800</pubDate>
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<title>Over medicated</title>
<description><![CDATA[<p>/\/ewsTarget Insider Alert (www.NewsTarget.com)<br />
Bringing you the inside story on topics that matter<br />
---------------------------------------------------------------<br />
(Please forward to others who may benefit)</p>

<p>I thought you might enjoy this hilarious look at new words to<br />
describe our over-medicated society:</p>

<p>Medheads - People who take multiple prescription drugs on a daily<br />
basis and, as a result, suffer from brain fog. They can be young (ADHD,<br />
depression drugs), middle-aged (cholesterol drugs, diabetes drugs) or<br />
elderly (Alzheimer's drugs, osteoporosis drugs, etc.). These are the<br />
people you see on the road who drive for ten miles with their turn<br />
signal on, who swing wide into the left lane before making a right<br />
turn, and who take four full seconds to accelerate after the traffic<br />
light turns green. Medheads. Not to be confused with Deadheads (who<br />
are actually a lot more fun to talk to). </p>

<p>Black boxer - A consumer who takes drugs that are so dangerous, the<br />
FDA requires the drug packaging to carry a large black box warning<br />
about severe harm or death. Black boxers usually don't care about the<br />
long-term harm to their health, they just want the pain (or other<br />
symptom) to go away so they can get back to watching prime-time<br />
television in relative comfort. </p>

<p>Drug madvertising - The practice of allowing drug companies to<br />
advertise patented chemicals directly to consumers in order to create<br />
demand for drugs that everyday people frankly do not understand. Every<br />
country in the world bans the practice of Direct-To-Consumer (DTC)<br />
drug advertising... except the United States, of course, where<br />
consumers are subjected to a never-ending barrage of ridiculous drug<br />
ads showing happy, healthy people popping purple pills they would<br />
never consume in real life. Of all industrialized nations in the world,<br />
only the U.S. (with the ever-caring support of the Food and Drug<br />
Administration) endorses drug madvertising. </p>

<p>News repeater - Not be confused with a news reporter, a news repeater<br />
is a person who gets paid to pretend to be a member of the press, but<br />
who actually just regurgitates whatever health / medical news the drug<br />
companies and the FDA are peddling this week. New miracle breast<br />
cancer drug discovered! Vitamin E may kill you! Sunlight is deadly!<br />
Don't trust Canadians (or their pharmacists)! Deadly, dangerous<br />
Chinese herbs may have possibly killed someone somewhere! Drug<br />
companies need billions of dollars in drug profits to find the cure<br />
for cancer! Evidence-based medicine is credible! These are the type of<br />
headlines constructed by news repeaters. </p>

<p>Fictitious disease - A fabricated disease invented for the sole<br />
purpose of creating a new market for patented drugs. ADHD is the prime<br />
example of a fictitious disease, and the psychiatric community is now<br />
well-practiced at labeling human behaviors "brain chemistry imbalances<br />
that need to be treated with chemicals." Other fictitious diseases<br />
include high cholesterol (it's not a disease, it's just a symptom),<br />
hypertension (also not a disease, but rather a symptom), and even<br />
osteoporosis (not a disease, just fragile bones caused by dietary and<br />
lifestyle habits that can be easily reversed). </p>

<p>Diseasification - The process of spreading the fictitious diseases<br />
through the population. This is how drug companies get rich: by<br />
manufacturing disease and convincing people they now suddenly suffer<br />
from it. See "Spontaneous Mass Diagnosis," below. Diseasification is<br />
greatly aided by drug madvertising (mass propaganda) designed to<br />
change the way people think about health and disease. Fear of public<br />
speaking used to merely be a fear. Now it's a disease, and there's a<br />
drug to treat it. Menopause used to be menopause. Now it's a disease,<br />
too. The former head of Merck, a man named Gadsden, once said he<br />
wished to expand the drug market to healthy people, so he wouldn't be<br />
limited to selling drugs only to sick people. He wanted people to take<br />
drugs like they chew gum. What a visionary! (See Selling Sickness to<br />
learn more.) </p>

<p>Spontaneous mass diagnosis - The process of redefining health in<br />
order to instantly label as many consumers as possible with a<br />
fictitious disease. Spontaneous mass diagnosis works by moving the<br />
goalposts that define a disease state. A "normal" level of LDL<br />
cholesterol used to be 130. Last year, a panel of corrupt medical<br />
decision makers with under-the-table financial ties to drug companies<br />
spontaneously decided that "normal" LDL cholesterol should be 100.<br />
Overnight, ten million more Americans were suddenly afflicted with the<br />
fictitious disease of high cholesterol. And the treatment for this<br />
spontaneous disease? Statin drugs, of course. The aim of Big Pharma is<br />
to make sure everyone fits the definition of at least one disease,<br />
because the prescription drug lords know that once a person gets on<br />
one prescription drug, the inevitable side effects will create other<br />
health problems that need to be treated with even more drugs. Instant<br />
recurring revenue! Now that's a clever marketing plan! </p>

<p>The Wall - Short for Walgreens, one of the top street corner<br />
pharmacies in America. The Wall is where medheads and black boxers go<br />
to buy dangerous drugs to treat their fictitious diseases because<br />
they've been subjected to spontaneous mass diagnosis. </p>

<p>Permission is granted to repost, reprint or reproduce this satire<br />
article in its entirety as long as no changes are made and credit is<br />
given to the Health Ranger + a link to <a href="http://www.NewsTarget.">http://www.NewsTarget.<br />
com/012580.html</a></p>]]></description>
<link>http://www.healthdiaries.com/scleroderma/crusaders/archives/2005/10/over_medicated.html</link>
<guid>http://www.healthdiaries.com/scleroderma/crusaders/archives/2005/10/over_medicated.html</guid>
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<pubDate>Wed, 26 Oct 2005 09:09:27 -0800</pubDate>
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<title>Bernie Siegel is God!</title>
<description><![CDATA[<p>Do you know who Bernie Siegel is? He's a great cancer surgeon who got tired of watching people die and started questioning modern medicine. He has some great books out. I heard an interview on the radio with him on Friday and he said (I'm paraphrasing): "The way to avoid getting killed by our medical system is to be a pain in the ass. Buck the system. Make them know who you are, not just a number or a disease. That is survivor behavior." That is what I teach to my sclero friends.  I really hope this helps you somehow. </p>]]></description>
<link>http://www.healthdiaries.com/scleroderma/crusaders/archives/2005/10/bernie_siegel_is_god.html</link>
<guid>http://www.healthdiaries.com/scleroderma/crusaders/archives/2005/10/bernie_siegel_is_god.html</guid>
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<pubDate>Sun, 23 Oct 2005 07:51:15 -0800</pubDate>
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<title>My favorite supplement for scleroderma</title>
<description><![CDATA[<p>From the <a href="http://www.life-enhancement.com/le/article_template.asp?ID=611">"Life-Enhancement"</a> website sited below. this is a great explanation of my favorite supplement for Scleroderma: L-Arginine:</p>

<p>"Arginine Boosts Insulin Sensitivity and Cardiovascular Function<br />
Major age-related health problems can benefit from this amino acid</p>

<p>ARGININE ALSO PROTECTS AGAINST HEART DISEASE<br />
Arginine's effects (through its release of NO) on decreasing blood pressure and increasing blood flow are also central to its role in helping to protect against heart disease. They explain the ability of arginine to improve exercise capacity, even in patients with congestive heart failure (a chronic weakening of the heart’s pumping capacity).2 And they explain arginine's ability to decrease pulmonary vascular resistance (a measure of the resistance of blood vessels to the flow of blood through them) in the lungs of patients with pulmonary hypertension.3 (Pulmonary refers to the lungs.)</p>

<p>OK, but what is pulmonary hypertension? It's high blood pressure in the lungs - not a good thing. It comes about gradually as a consequence of untreated respiratory failure. And what is that? Respiratory failure is a condition in which oxygen levels in the blood become dangerously low, or carbon dioxide levels become dangerously high. It results from an inadequate exchange of oxygen and carbon dioxide between the lungs and the blood, or from an inadequate movement of air in and out of the lungs. And those defects can be caused by many different diseases or conditions that affect one's ability to breathe properly. A few examples are chronic bronchitis, asthma, emphysema, muscular dystrophy, and obesity.</p>

<p>PULMONARY HYPERTENSION IS A MAJOR THREAT<br />
Let's review that chain of events in the reverse order (the order in which the events actually occur). Someone with one of those breathing-impairment conditions may develop respiratory failure, which is manifested as poor oxygenation of the blood. This can lead to pulmonary hypertension as the cardiovascular system tries to compensate for the oxygen deficiency. The pulmonary hypertension comes about through a constriction of the blood vessels, and this increases the pulmonary vascular resistance, because the now narrower inner diameter of the blood vessels tends to impede blood flow.</p>

<p>All in all, this is bad news, because regardless of what caused the respiratory failure in the first place, pulmonary hypertension will damage the blood vessels, further impairing oxygenation. And poor oxygenation will eventually cause heart failure and other malfunctions of the heart and brain. Finally, death pays a visit.</p>

<p>ARGININE REDUCES PULMONARY HYPERTENSION<br />
But didn't we say that arginine could help with pulmonary hypertension? Yes - and a recently published study from Japan gives new evidence of that fact.4 The study was a randomized, double-blind, placebo-controlled trial on 19 patients (average age 49) with pulmonary hypertension. Oral arginine supplementation was followed by hemodynamic (blood-flow) testing and cardiopulmonary exercise testing, using a number of different measurement techniques that need not concern us. Let's just see the results.</p>

<p><br />
--------------------------------------------------------------------------------<br />
Arginine's effects (through its release of NO) <br />
on decreasing blood pressure and increasing <br />
blood flow are also central to its role in <br />
helping to protect against heart disease. <br />
--------------------------------------------------------------------------------</p>

<p>With a dose of 0.5 g of arginine per 10 kg of body weight (equivalent to 4 g for a 175-lb person), there was a 9% drop in pulmonary arterial pressure and a 16% drop in pulmonary vascular resistance 60 minutes after administration, indicating improved blood flow. For evaluation of exercise capacity, a dose of 1.5 g of arginine per 10 kg of body weight (equivalent to 12 g for a 175-lb person) was administered daily for one week. The patients were then tested while riding an exercise bicycle. With arginine (but not placebo) there was an 8% increase in peak oxygen consumption, associated with a 12% increase in peak work load, indicating improved cardiovascular function."<br />
 <br />
You can read more at: <br />
<a href="http://www.life-enhancement.com/le/article_template.asp?ID=611">http://www.life-enhancement.com/le/article_template.asp?ID=611</a></p>]]></description>
<link>http://www.healthdiaries.com/scleroderma/crusaders/archives/2005/10/my_favorite_supplement_for_scleroderma.html</link>
<guid>http://www.healthdiaries.com/scleroderma/crusaders/archives/2005/10/my_favorite_supplement_for_scleroderma.html</guid>
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<pubDate>Wed, 19 Oct 2005 10:44:03 -0800</pubDate>
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<item>
<title>With thanks to Dr. Joseph Mercola:</title>
<description><![CDATA[<p>Ponderisms from <a href="http://www.mercola.com">Dr. Joseph Mercola </a><br />
 <br />
Health is merely the slowest possible rate at which one can die.</p>

<p><br />
The only difference between a rut and a grave is the depth.</p>

<p><br />
Some people are like Slinkies. Not really good for anything, but you still can't help but smile when you see one tumble down the stairs.</p>

<p><br />
Health nuts are going to feel stupid someday, lying in hospitals dying of nothing.</p>

<p><br />
Have you noticed since everyone has a camcorder these days no one talks about seeing UFOs like they used to?</p>

<p><br />
Whenever I feel blue, I start breathing again. <br />
</p>]]></description>
<link>http://www.healthdiaries.com/scleroderma/crusaders/archives/2005/10/with_thanks_to_dr_joseph_mercola.html</link>
<guid>http://www.healthdiaries.com/scleroderma/crusaders/archives/2005/10/with_thanks_to_dr_joseph_mercola.html</guid>
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<pubDate>Thu, 13 Oct 2005 09:12:11 -0800</pubDate>
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<title>Scleroderma, healthcare and the me generation!</title>
<description><![CDATA[<p>I just heard from one of my online Sclero friends who said she had dinner last night with 2 of her friends who are both negotiating the healthcare "nightmare" - for different reasons. This got me to thinking. Funny, most of the friends I have who go thru the healthcare "nightmare" are the smart ones. The ones who just do what they're told and, honestly, I don't think they worry about living or dieing, just go for their annual physicals and take the drugs they're handed. Have the hysterectomies. One of my best friends moved to Montana and so we've pretty much given up regular contact and she had melanoma about 5 years ago. They look a BIG piece out of her flesh along with the mole, gave her some tests and sent her on her way. So for the last 5 years, everytime a gland swells she thinks it's metastasized and she's ready to jump off a building. Being physically ill has wrecked her mentally, she's a "smart" girl, too. My other "best" friend has breast cancer and had everything possible removed to keep it from coming back and now it is in her spine and inoperable. She goes to Dana Farber Hospital in Boston and gets very good care and I swear she's not worried about it. She just does what they tell her. Hey, if this keeps up the average life expectancy for American women will be back down to 40! What the heck happened to our generation? Atomic testing? a bad vaccine? processed food? flouride? Saturday morning TV? microwaves? Heavy metal music? just living thru the '80's? AIDS started with our generation so you have to wonder. Have you heard the recent links between breast cancer and just having electricity? I don't know kiddies, where is it all leading?<br />
________________</p>

<p>Todays lesson: We're all screwed.</p>]]></description>
<link>http://www.healthdiaries.com/scleroderma/crusaders/archives/2005/10/scleroderma_healthcare_and_the_me_generation.html</link>
<guid>http://www.healthdiaries.com/scleroderma/crusaders/archives/2005/10/scleroderma_healthcare_and_the_me_generation.html</guid>
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<pubDate>Fri, 07 Oct 2005 06:01:40 -0800</pubDate>
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<title>Scleroderma? Not today, I&apos;ve had enough!</title>
<description><![CDATA[<p>I have a lot to say about this subject but I really find that I work better with an audience! Hello, hello is there anybody out there? All comments would be appreciated.</p>

<p>_____________________</p>

<p>So, let's say you're the typical autoimmune disease suffering person: a young woman, early to mid 20's blissfully skipping along thru life and then, one day, wow, your fingers turn blue when you are cold! Weird! But it doesn't hurt and there's no blood so it must be no big deal, right? Well, we'll see. Maybe you tell your mom and she says you'd better go to a Dr. So you do, expecting a quick answer and a quick solution, because, well, this CAN'T be anything big - it's not CANCER for God's sake! Your Dr. takes a look and, knowing you since childhood, is hoping for the best, so he says "Don't worry about it. Stay warm. Very common in women." OR He doesn't know you very well so he doesn't care how you react and says "OH MY GOD!!! YOU ARE A VERY SICK YOUNG WOMAN! GET THEE TO A MAJOR TEACHING HOSPITAL!!!" So you make your appointment, like a good little dubey, confused and frightened and amazed that this could be such a big deal. Maybe you do some research on the net or library, hmmm... blue fingers, fingers that turn color in response to cold ... Raynaud's disease or phenomenon. Disease=a primary condition, no big deal? Phenom=linked to several devastating autoimmune conditions. It takes you up to 6 months to get in to see the specialist. During that time you've gone thru all the stages of grief, you think. You get there, prepared to accept the worst and the expert says: "You don't have enough wrong with you, go live your life." What??? NOT ENOUGH WRONG? But, but ... I have this ... and this ... "Go away, now. NEXT!" The specialist proclaims. You've got a choice because something is obviously wrong with you. A) you believe him and go on in blissful ignorance; B) you don't buy it and start looking for your own answers. I recommend B.</p>]]></description>
<link>http://www.healthdiaries.com/scleroderma/crusaders/archives/2005/10/scleroderma_not_today_ive_had_enough.html</link>
<guid>http://www.healthdiaries.com/scleroderma/crusaders/archives/2005/10/scleroderma_not_today_ive_had_enough.html</guid>
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<pubDate>Thu, 06 Oct 2005 10:37:27 -0800</pubDate>
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<title>Scleroderma and the power of the placebo</title>
<description><![CDATA[<p>From the article "Big Pharma Bad Karma" on <a href="http://goanimal.com/newsletters/2005/big_pharma/big_pharma.html">www.goanimal.com</a>:</p>

<p>"...disease by definition</p>

<p>To understand Big Pharma’s power over our health, it’s important to understand how disease is managed in large populations. Most medical conditions are defined by a set of numbers. If we broaden the range of those numbers, even slightly, and apply it to a population of millions of people, the consequences can be profound. </p>

<p>For example, think about the numbers that are attached to your blood pressure. If it’s above X, you’re officially "diseased" and a candidate for medication. If it’s below X, you’re "healthy." But X is determined, not by some perfect medical formula, but by consensus within the medical community. Exact cut-off points are debatable and relative.</p>

<p>This is where Big Pharma steps in. If they can expand the statistical definition of a disease, even by a small margin, they can cash in. One or two percentage points, spread across America or better yet, the world, adds up to millions of newly created patients. Thus it comes as no surprise to hear that Big Pharma has become an active participant in the process of defining disease. By pouring money and influence into experts, conferences and journals, Big Pharma stretches the definitions and expands the patient pool.</p>

<p>the power of suggestion<br />
It would be one thing if human disease was a matter of absolutes, but it's not. Social and cultural forces play an immensely powerful role in determining how we interpret our physical experience. Is obesity a disease? Workaholism? Weak sexual desire? Social anxiety? It’s easy to imagine situations in which any physical sensation or experience of the human body might be labeled as health or disease, depending on the context. </p>

<p>Our health is the product, not simply of genetics and biochemistry, but also of human influence. As intensely social animals, we pay close attention to the physical well-being of our families and friends. If people in the tribe speak of getting one disease or another, we naturally begin to wonder if such afflictions are part of our experience as well. If everyone around us is complaining about headaches or low back pain, we may very well decide to join the gang. </p>

<p>Have you ever noticed how trendy diseases can be? One month it’s eating disorders, the next month it’s carpal tunnel syndrome, fibromyalgia or irritable bowel syndrome. None of these conditions even existed 100 years ago, but now they’re "epidemic." Similarly, medical students frequently observe how closely their physical sensations parallel the conditions that they're studying. "Med student's disease" is legendary. </p>

<p>Big Pharma is well aware that disease is creatable; they know full well that their customers are vulnerable to suggestion. By manipulating images, ideas and narratives, they shape the way people think about their bodies and in turn, their health..."  </p>

<p>________________________________</p>

<p>What does this have to do with anything you ask? Well just yesterday I saw another desperate post on one of the BB's I belong to from a woman who's relative is in bad shape from sclero. I suggested to her weeks ago: 1) See your assigned Drs.; 2) Find a way to see a sclero "expert"; 3) If you couldn't get satisfaction from these 2 sources call the <a href="http://www.roadback.org">RoadBack</a> people. If I was on my last leg, that's who I would call. They believe you can cure this with antibiotics. Probably not the ideal situation for a "last resort" because it can take months to kick in. But standard medicine will admit they can't "cure" this. She reported that the relative had contacted the antibiotic folks and got herself on a program but gave it up because her normal Dr. told her it wouldn't work. These people were doing nothing else for her and then they had to say that the little bit she was doing wasn't going to work anyway. What is up with that? Aside from the fact that an infection triggering a sclero patient's body to go haywire to begin with is not completely out of the realm of possibility, there is always the placebo effect to consider.</p>

<p>The Placebo Effect has a negative connotation however, I recently read an article by a mainstream health practitioner lamenting the use of alternative meds because it robbed physicians of "the power of the placebo". He believed that a MD has an invaluable role in prescribing meds just because his status as an authoritarian will cause patients to believe in their cure. A bit backwards, if you ask me.</p>

<p>Sangeeta Iyer, in their online Bryn Mawr article in the <a href="http://serendip.brynmawr.edu/bb/neuro/neuro00/web2/Iyer.html">http://serendip.brynmawr.edu/bb/neuro/neuro00/web2/Iyer.html</a> Healing is Believing: The Placebo Effect says this about placebos:<br />
"...The power of the placebo and its effects on the human body call to question the power of the mind and general medical practice today. The power of a thought, although delusional, has the ability to create physical changes in the body. To diminish painful symptoms that would otherwise need expensive medications. Why is this type of treatment not cared to be prescribed as often? Why is it being overlooked by medical practicioners throughout the nation even though it provides measurable results just as any experimental drug?..." </p>

<p>TODAY'S LESSON: Don't let an MD rob you of your hope!</p>]]></description>
<link>http://www.healthdiaries.com/scleroderma/crusaders/archives/2005/10/scleroderma_and_the_power_of_the_placebo.html</link>
<guid>http://www.healthdiaries.com/scleroderma/crusaders/archives/2005/10/scleroderma_and_the_power_of_the_placebo.html</guid>
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<pubDate>Sun, 02 Oct 2005 09:36:25 -0800</pubDate>
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<title>Giving Scleroderma the Finger</title>
<description><![CDATA[<p>Hi - sorry I've been MIA for a whole week! I'm fine, I've just been busy. That's part of what's so crazy about this condition. You can look fine and you can be busy with other things, but it's always there in the background. Right now I have a nasty finger ulcer on my right index finger. It requires peroxide, antibiotics and redressing twice a day. It's only been a month and a half and it's showing signs of healing but they hurt worse as they heal! It starts to feel more like a burn and you just want to rip the skin off. My good friend who also has this condition says "Don't rip it off!" She told me about a "nice" way to remove the dead skin by putting your hand in a bowl of water and running an egg beater in the other side of the bowl. I'm NOT that coordinated! I've also been trying to get off the NSAIDS. When I have a finger ulcer I usually have to take at least 1, sometimes 2, Aleve a day. After a few weeks of this I noticed that I am shorter of breath than normal so I think they are affecting my heart. I'm looking into Bromolain as a replacement (it's a natural substance from pineapples, anti-inflammatory). I'm also adding L-carnitine to my vitamin regimen. It's supposed to help with heart function and O2 disbursement. We'll see. By the way it is a BEAUTIFUL day!</p>]]></description>
<link>http://www.healthdiaries.com/scleroderma/crusaders/archives/2005/10/giving_scleroderma_the_finger.html</link>
<guid>http://www.healthdiaries.com/scleroderma/crusaders/archives/2005/10/giving_scleroderma_the_finger.html</guid>
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<pubDate>Sat, 01 Oct 2005 08:51:42 -0800</pubDate>
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<title>Coping Skills for Scleroderma</title>
<description><![CDATA[<p>It's Saturday so I'm taking a break. Here is some info that I'd lke to share from the website http://askwaltstollmd.com/archives/cliffs/29445.html <br />
Author Cliff Garner 1/10/2000, says: "Henry Dreher authored an interesting article titled “Immune Power Personality," which appeared in the Autumn 1996 issue of the Noetic Sciences Review. He reminds us that psychological factors influence the immune system and the body's network of defense and healing. We blame much on stress, but stress is inevitable and sometimes a positive force. It is not stress itself, but how we cope with it that determines how our bodies are affected. How we cope is largely dependent on our personalities (and I would add, on our spiritual beliefs). Dreher presents the findings of seven researchers each of whom has studied one immune power trait. These are given below.<br />
1. Psychologist Gary Schwartz, Ph.D., addresses what he calls the "ACE factor," attention, connection and expression. He showed that people who are in tune with their mind-body signals of fatigue, pain, discomfort, distress, anger, sadness and pleasure cope better psychologically, exhibit a better immune profile, and have a healthier cardiovascular system.<br />
2. Psychologist James Pennebaker, Ph.D., focused on the capacity to confide. He found that people who confide their feelings, traumas and secrets to others and to themselves have healthier psychological profiles, greater immune responses, and fewer incidences of illness.<br />
3. Psychologist Suzanne Ouellette, Ph.D., developed the concept of personality hardness, which includes a sense of control over one’s life, health and social conditions, a strong<br />
commitment to one's work, creative activities and relationships, and looks at stress as a challenge rather than as a threat. These people have stronger immune systems and fewer illnesses.<br />
4. Psychoneuroimmunologist George Solomon, MD, studied assertiveness. His finding was that people who assert their needs and feelings have stronger immune responses, and the ability to overcome a range of diseases usually associated with immune dysfunction. He also noted that the ability to find meaning in “stressful circumstances" also promoted immune enhancement.<br />
5. Motivational psychologist David McClelland, Ph.D., focused on what he called affilliative trust or the motive of unconditional love. He showed that people who are strongly motivated to form relationships with others based on unconditional love have enhanced immune function and reduced illnesses.<br />
6. While heading the Institute for the Advancement of Health, Alan Luks carried out a large survey which showed that altruistic people who commit themselves to helping others suffer fewer illnesses.<br />
7. Psychologist Patricia Linville, Ph.D., focused on self-complexity. People who explore many facets of their personalities, so-called "self-aspects," are better able to handle stress, depression, physical symptoms, etc., and have fewer illnesses. These people have strengths to fall back on when one aspect of themselves is wounded or lost." </p>]]></description>
<link>http://www.healthdiaries.com/scleroderma/crusaders/archives/2005/09/coping_skills_for_scleroderma.html</link>
<guid>http://www.healthdiaries.com/scleroderma/crusaders/archives/2005/09/coping_skills_for_scleroderma.html</guid>
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<pubDate>Sat, 24 Sep 2005 06:31:34 -0800</pubDate>
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<title>Scleroderma  - Scaryderma!</title>
<description><![CDATA[<p>I'm kinda bummin' today. The misconceptions about this "illness" are like a never ending tide. I heard from someone whos sister is just about on her death bed with scleroderma. She refers to it as "end stage" - like it's cancer. I'm sure that's what the Drs. are telling her. People, this is AUTO immune. Self-caused. PART of what you are. It doesn't metastasise, it sprouts from your own cells, malfunctioning. It's not like the Blob, coming up behind you and engulfing your whole body. It comes from inside YOU. OK - my theory - the meds that help the most in this have only been recently discovered. They are just the tip of the iceberg. The substance Nitric Oxide is inside your cells and it controlls your blood vessels and muscles and who knows what else. There is some as yet undermined process in that Nitric Oxide that has gone haywire in Scleroderma. Some researchers say it is a matter of too much and some say it is too little. Either way, the best drug for it right now is Viagra, a Nitric Oxide enhancer. It also has the least side effects. But be careful trying to obtain it from your insurance company! It is easier for 70 year old men to get it for their sex life than for a 30 year old woman to get it to save her fingers, lungs and maybe even her life. TODAYS LESSON: If you have sclero and your Dr. hasn't offered you VIAGRA - ASK HIM FOR IT! </p>]]></description>
<link>http://www.healthdiaries.com/scleroderma/crusaders/archives/2005/09/scleroderma_scaryderma.html</link>
<guid>http://www.healthdiaries.com/scleroderma/crusaders/archives/2005/09/scleroderma_scaryderma.html</guid>
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<pubDate>Fri, 23 Sep 2005 10:08:27 -0800</pubDate>
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<title>Scleroderma World</title>
<description><![CDATA[<p>I have had an interesting morning. When I checked my emails I heard from several people in the sclero world who are facing some pretty mindboggling resistance from the established medical community. One is a woman who cured herself thru nutritional supplements and, dare I say it - prayer. Who has gotten a large supplement company to back an actual grassroots research study to see if it has any affect on sclero. The company is being taken to court, now, to supposedly stop them from making unfounded claims. Hey, they are TRYING to do the clinical trial! The other contact is a fellow who suffered with childhoold sclero who just wants to get the message out that it's not a death sentence. Again, he's being frustrated by the establishment who doesn't want him to talk about how he did it. What is up with this? Any ideas? Maybe we should remember that old addage and "follow the money"? Look, I understand how it sounds to the scientific mind that these folks consider prayer just one more item in their medicine cabinet - but how about if we look at it another way and call it "positive thinking"? Does it sound so radical then? By the way, today's advice: DON'T GIVE IN TO THIS "DISEASE". POSITIVE THINKING WILL GO A LONG WAY TOWARD ALLOWING YOU TO LIVE YOUR LIFE LONGER. Sure, this "illness" stinks and, especially if you have what is called "Diffuse" scleroderma, your body is hardening all over, all at once. You are being attacked and knowledge will help you to fight back. </p>]]></description>
<link>http://www.healthdiaries.com/scleroderma/crusaders/archives/2005/09/scleroderma_world.html</link>
<guid>http://www.healthdiaries.com/scleroderma/crusaders/archives/2005/09/scleroderma_world.html</guid>
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<pubDate>Thu, 22 Sep 2005 07:20:34 -0800</pubDate>
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<title>... wait, DON&apos;T give me any of those things, PLEASE!</title>
<description><![CDATA[<p>I am a woman in my early 40's who has lived with a few mysterious health problems for almost 20 years. I started with a severe lung infection that just wouldn't go away. It sapped me of my stamina, at 24, and I developed numbness and color changes in my fingers the following winter. I went to my family Dr. and he prescribed antibiotics, which didn't work, so I had to go back several times. I also went to a Lung Specialist, who said I didn't have anything wrong with me. My GP finally ran a test for Lupus and it came back positive so I was sent off to the local teaching hospital. It took several months to get an appointment so I used the time to study Bernie Siegel, take vitamins and stayed out of the sun. When I finally went there they said I was sent "on a wild goose chase". Yay, for me! Some time passed and I realized that I still hadn't regained my stamina and I still had the circulation problem (Raynauds). Looking at the medical books of the period, one disease that came up repeatedly with this condition (Raynauds) was Scleroderma. Sounded just awful! Your skin was supposed to encase you like a "hidebound" book and you'd be dead in 7 years or less, unable to open your mouth or use your hands. Whew! I knew I didn't want that, but without a final diagnosis, how could I be sure? Well, 7 yers passed and I didn't die or harden so I thought I was home free. I had a cousin die of Diffuse Scleroderma during that time and he did harden. I KNEW I didn't look like that! My raynauds worsened to finger ulcers (painful open sores that take months to heal and get infected easily) and I started to get red spots on my hands and face (telangiastica). Then heartburn. I did some interet research and found that there had been great advances in Scleroderma research over the last 20 years and one of the notable things was that it was now recognised that there was a "limited" form of the disease. Oh, oh! It had the symptoms of: Calcifications, C; Raynauds, R; Esophageal problems, E; Sclerodactly, S (hard finger skin); and Telangiastica (red spots). I had 3 of those items. But not all, so, hey, still safe, right? Wrong! More research, you only need 2 of the 5 for a diagnosis. Supposedly. This leads me to the turning point at which I will ask my readers to stay tuned. I intend for this blog to focus on the difficulties one can face when dealing with established medicine with this medical condition and the helpful things that you can do for yourself. I also intend to share the resources that I have found helpful in my research into this medical condition. LESSON 1: Limited Scleroderma is not a disease, it is a medical condition that can be lived with and, hopefully, eased by science and lifestyle. Stay tuned!</p>]]></description>
<link>http://www.healthdiaries.com/scleroderma/crusaders/archives/2005/09/_wait_dont_give_me_any_of_those_things_please.html</link>
<guid>http://www.healthdiaries.com/scleroderma/crusaders/archives/2005/09/_wait_dont_give_me_any_of_those_things_please.html</guid>
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<pubDate>Wed, 21 Sep 2005 10:46:47 -0800</pubDate>
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