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DC- why
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Mary Beth & Richard

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Mary Beth & Richard

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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

Mary Beth & Richard

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Mary Beth & Richard

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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

Jan

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Jan

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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.

jim h

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jim h

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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.

Mary Beth & Richard

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Mary Beth & Richard

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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

jim h

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jim h

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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.

Mary Beth & Richard

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Mary Beth & Richard

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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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comprehend   recommending   fasciectomies   understanding   complicated   sufferers   overproduction   possiblibity   collagen   perpetuates   researchers   Over-production   structures   questionaire   recommended   verapamil   production   purple-skinned   characteristics   non-suffering