Topic: Need information on ACA/ Linear Scleroderma, please
trueblue
Frequent Contributor (1K+ posts)
Member # 7348
posted
^up^
-------------------- more light, more love more truth and more innovation Posts: 3783 | From somewhere other than here | Registered: May 2005
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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trueblue
Frequent Contributor (1K+ posts)
Member # 7348
posted
up some more
-------------------- more light, more love more truth and more innovation Posts: 3783 | From somewhere other than here | Registered: May 2005
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Melanie Reber
Frequent Contributor (5K+ posts)
Member # 3707
posted
URGENT! Need help re: ACA/ Scleroderma information.
Dear friends,
We now have over 100 pages of valuable information that needs to be weeded though and organized.
Trueblue, bless her heart, has been working on this non-stop, and has compiled most things into a word document.
But the information needs editing, and the most pertinent stuff needs to be teased out to send to a Doctor who is now willing to help!
He is willing to put his research team on this right away, but first, we need to condense what we have.
PLEASE, we need someone who is willing to take this document and go through it and edit, and highlight, and UNDERSTAND what it all means enough to make that decision!
I also have other names, numbers, sites, and Doctors who will help, but again, it all needs to be organized.
Let me stress that this is for someone that you all know and love... and she has helped each one of you...if not directly, then at least indirectly with her 20+ years of Lyme and patient advocacy.
We simply can not do this alone...and I am pleading for some assistance here.
I need someone who is committed to follow this through ASAP.
Please Email me for more information.
Thank you so very much in advance, Melanie
Posts: 7052 | From Colorado | Registered: Mar 2003
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5dana8
Frequent Contributor (1K+ posts)
Member # 7935
posted
mel
I don't know how to use my "word" program yet. Is there any thing else I can do to help?
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
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Melanie Reber
Frequent Contributor (5K+ posts)
Member # 3707
posted
Dana, you love you!
How do you feel about going to a couple of other message board sites for more information?
Posts: 7052 | From Colorado | Registered: Mar 2003
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bpeck
Frequent Contributor (1K+ posts)
Member # 3235
posted
Mel: I've done some pretty exstensive research on ACA, including paying for pull papers out of Germany- which is where most of the knowledge on ACA is. And that's scanty.
ACA occurs in 2 stages, in long time untreated lyme. It's 1st stage is inflammaotory and can be curtailed by abx. Last stage is destruction of elastin, then skin thinning, and then vascular problems. Pretty hard (and maybe impossible) to reverse at this stage).
Histologically, it mimmicks Erythema annulare centrifugum and a few other unpronouncable maladies as ther are immune cell inflitrates.
Even in Europe it's mis diagnosed 80% of the time. In this country - good luck finding ANYONE to take you seriously. I doubt LLMDs know much about it either.
ALthough it occurs with infection from one of the European genospecies of Lyme (b.afzelii)- no one really knows if it's a late manisfestation of other species including the north americam- because quite frankly - no ones looking.
Minocycline seems to be the drug of choice for ACA.
Barb
-------------------- Barb Peck (Elder LymeNet user). Lyme since 1975 Transfusion Posts: 1882 | From VT | Registered: Oct 2002
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Melanie Reber
Frequent Contributor (5K+ posts)
Member # 3707
posted
Barb,
Thank you so very much for your input! Is it possible that we can talk off board, via email a bit more about this?
If you are willing, please email me at the address below.
trueblue
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Member # 7348
posted
up
-------------------- more light, more love more truth and more innovation Posts: 3783 | From somewhere other than here | Registered: May 2005
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AliG
Frequent Contributor (1K+ posts)
Member # 9734
posted
quote:Originally posted by cave76: I thought that ACA was the rash produced by only European ticks? Of course, we know that ticks know no borders----but can they swim?
Ticks may or may not be able to travel, but people can.... Just a thought.
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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5dana8
Frequent Contributor (1K+ posts)
Member # 7935
posted
please can anyone help to look thru this site for information on scleroderma
Looking for any really pertinent information such as treatments & protocals.
There are lot of posts to weed thru on other diseases such as CFIDS & lupus ect..
click on the lind below and then click on bulletin boards.
posted
Hi Melanie. The moderator over at www.roadback.org has scleroderma.He has a wealth of knowledge and can tell you the parts of the literature to have on scleroderma that you need to speak with doctors and so forth.He will be able to tell you first hand how he and others have been able to achieve full remission from the disease.
Im thinking he could answer your questions in order to help whittle down all the info.His name is Richie so just post to his attention.My experience is that he has been a valuable resource to untold numbers of scleroderma patients.The ones who have been fortunate enough to find the antibiotic treatment.
I hope this helps in your fight to help a friend.RG
Posts: 140 | From Texas | Registered: May 2006
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5dana8
Frequent Contributor (1K+ posts)
Member # 7935
posted
I also found Richie to reply on alot of posts. I would agree with the above poster that richie would be a very good person to talk with-maybe try to e-mail him.
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
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