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05/09/2003 23:25
Mary Beth & Richardnot registered
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05/09/2003 23:25
Mary Beth & Richardnot registered
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DC- why
Jerry has said many times that "surgery begets surgery" have read very often, on legitimate sites, that surgery is in and of itself a trauma. Everyone agrees that trauma causes DC to be more aggressive. I totally agree with Jerry and the numerous other sites, they are right. What is troubling are the unanswered questions of why? There is no doubt that since trauma increases DC traditional fasciectomies are traumatic. Any procedure that carves palms and fingers, have over one hundred stitches and many times leave open palms, that's traumatic!! Just read info today recommending that Dr's leave the palm open as it cuts down on chance of infections, and that closure of such a large area is difficult. It seems that you have to go back to the roots and the basics, or at least we do. What is DC? Our focus has recently been on and currently is on usage of hands and relief of pain. But after that what? In trying to find out why allopurinol is recommended on two good sites for DC sufferers, we get into more medical info and research than we were ever looking for. Basically if DC's roots are in overproduction of collagen, you must begin to look into collagen. Jerry was trying to pursue this when he posted the questionaire for the medical lab that is working on a collagen inhibitor. Not enough res- ponses were received for him to get where he needed with that company. Spoke w/an RN today who also has a PHD. She quickly agreed with thoughts that any person who has a disease that produces excess collagen should not be treated with an aggressive surgery such as fasciectomy. The surgery itself sends the message for the body to produce more collagen to cure the wounds. If a non-suffering DC patient scrapes their knee they need the collagen to cure the scrape, but their body then knows when to cut off the extra collagen. Dup's sufferers bodies do not know when to stop, so any wound that requires collagen must add to the degree that is being produced, but since it doesn't stop, it perpetuates the problem. Unanswered questions abound, will not stop looking for answers. Good luck, Mary Beth & Richard
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05/09/2003 23:13
Mary Beth & Richardnot registered
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05/09/2003 23:13
Mary Beth & Richardnot registered
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DC- why
Also is it possible that too much collagen is produced because of too much uric acid in the blood? Everything that we research leads to this possiblibity. Two RX's, allopur- inol as previously mentioned, as well as probenecid seem to be used for gout, kidney stones and some other ailments with a lot of similar characteristics and sufferer patterns. If anyone has any info/studies,etc. on these two RX's please post. Mary Beth & Richard
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05/10/2003 23:04
Jannot registered
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05/10/2003 23:04
Jannot registered
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DC- why
i've heard somewhere before of DC and gout being similar. also know a few nurses who say eating cherries helps gout. yet as DC sufferers we are not supposed to eat purple skinned fruits & vegs. i think DC is metabolic, genes and liver. we need enzymes. wish i knew more on the cellular level, still looking into it. i definitely don't take vit c anymore, never use aloe vera on hands, and do eat more fruits that have digestive enzymes in them. (pineapple, papaya, kiwi, etc.) never was a drinker so avoiding alcohol no problem. i take silymarin for liver, and am looking into something about dandelion for the liver. 3 yrs since diagnosis, knock on wood, hands so far so good.
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05/10/2003 23:19
jim hnot registered
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05/10/2003 23:19
jim hnot registered
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purple fruit?
Several posters on this forum have stated that purple-skinned fruit aggravates DC. But I can't find any supporting medical reference on the web.
RE: Over-production of collagen: it's more complicated than that. Many structures in our bodies are made of collagen, and if it couldn't be continually produced these structures couldn't renew or heal themselves.
For example, a critical lack of Vitamin C can cause the disease known as scurvy, where inability to produce collagen causes symptoms like loss of teeth.
DC is a matter of undesired production of a specific type of collagen in specific locations.
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05/10/2003 23:49
Mary Beth & Richardnot registered
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05/10/2003 23:49
Mary Beth & Richardnot registered
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verapamil
Totally agree and comprehend the importance and benefits of both collagen and vitamin C for an overall healthy body. Collagen production within the body is a vital element of the body's self curing process, and yes collagen production and the understanding thereof is a complicated process that many researchers and scientists are much better able to comprehend than non-medical persons. Not expressing any desire for elimination of either collagen or vitamin C, and certainly comprehend that there are different strains of collagen and that between the different strains and the pinpointed locations of excess is where the problem somehow lies. But just as people who suffer kidney stones are recommended to eat a reduced vitamin C diet, so there are many diseases where too much of an otherwise "good thing" is a problem. We don't pretend to have any answers to the difficult questions we're asking, just pointing out that we and others are asking them. Opinions and sharing of exper- ience is what this forum is all about. Mary Beth & Richard
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05/11/2003 23:42
jim hnot registered
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05/11/2003 23:42
jim hnot registered
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verapamil
M.B. & R. - I note from earlier posts that you may be trying Verapamil. Does the supplier offer any recent statistics, study results, references, or other indication that this stuff works? I have yet to see a post from anyone who got positive results from it, even after months of application.
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05/11/2003 23:48
Mary Beth & Richardnot registered
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05/11/2003 23:48
Mary Beth & Richardnot registered
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verapamil
Jim H, It's funny you would ask about the verapamil. Just received the order today so have no answers yet. Have read some of the same info you cite that some have seen no benefit. Will keep you posted as he uses it. It is expen- sive as many have complained of, but the Rep. for Talon offered to speak w/our Insurance Co. if they were hesitant to contribute to costs. He will try it for ledderhose as there seen to be less options for that disease and we figured anything is worth a try. Good luck, Mary Beth & Richard
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