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Why these people want to hang onto these treatments that don't work and make them worse is beyond me. It is a tragedy and I agree, the other boards were so depressing, I signed up, made one post then never to return. Praise God for RB :dude:. I try to tell all those I know with AI diseases (and it seems that number is strangely increasng) but I have to remember, you can lead a horse to water but you can't make em drink!
Dx with CREST 2/08. minocycline 2x/day M-F, LDN 3mg nightly, 90 mg of Armour thyroid. Probiotics, milk thistle, L-argine, L-lysine, natto + serro, 81mg baby aspirin, daily multiple, 1000mg Vit C, lutein, cinnamon extract, evening primrose oil, omega 3s, Ubiquinol 100mg, alpha lipoic acid and exercise when I can.
Are AI diseases increasing, or is detection identifying them earlier and in more people?
I think it is a combination. Years ago, before pc came along, researchers noticed that when animals were crowded certain diseases and behaviors occurred in the stressed populations. The highest incidence of breast cancer is in areas of NYC where the population is dense, people have been living in that spot for hundreds of years, and some people never leave the neighborhood — birth to death. So, is it genetic, or environmental? Science is starting to unlock that door. So, as we have become a more urban, closely packed humanity, yes, some diseases seem to be on the increase. Could it be that we are sharing our flora and fauna with others, and that is the cause of some of our diseases? Maybe not always, but I think so.
On the other hand, it takes years for some of us to be dx. And, when we do it is a blood test. Sometimes, the blood test is a broad spectrum, and an A
I pops up that we didn't suspect, or something genetic no one in our family has ever had. What a surprise. I think the blood tests are catching more of the AI than before. I think that my dx was very early in the progression, and that is because of the blood test, which my neurologist dismissed as being not important. Good thing I'm a bit of a rebel, had already suspected it, and kept looking until I found roadback. Other folks don't have that impulse to keep looking. That's where we can give back.I don't think there is any question that the SDF has an organic problem with AP. They don't mention it anywhere on their website. Their board members don't mention it either.
I wonder sometimes what would be an effective strategy to get them to at least discuss it. There has to be an unwritten policy within the organization that no one ever discusses AP. What is the downside for the organization? Would the doctors they interview suddenly stop taking their calls? To they receive financial support from the pharmaceutical companies?
Margaret,
To your question, “do they receive financial support from the pharmaceutical companies” …next time you're on one of their websites, check out the sponsorship section. The pharmaceutical companies even have icons with direct links to their websites. They are the funding sponsors and the controlling force behind these sites.
And to your question “what is the downside for the organization?” Fear of losing PROFITS. There seems to be no unbiased/accurate information regarding AP on any website funded by pharmaceuticals. Minocycline is cheap and it puts us into remission – versus years of treating symptoms with enbrel and thousands of other expensive meds that are extremely profitable to the pharms. You can see why it would be counterproductive of them to list AP as a valuable, valid treatment, but it would be the honest, moral thing to do. This is one of the many reasons people have lost faith in pharm companies, there is no integrity left, only profits.
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