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home:diseases:scleroderma [01.18.2019] – [Notes and comments] sallieqhome:diseases:scleroderma [01.19.2019] – [Patient] sallieq
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 http://www.ncbi.nlm.nih.gov/pubmed/19758208 http://www.ncbi.nlm.nih.gov/pubmed/19758208
 </blockquote> </blockquote>
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 +Hypodermitis sclerodermiformis. Successful treatment with ultrasound.  (({{pubmed>long:7082022}}))  
  
 ===== A Guide to Antibiotic Therapy ===== ===== A Guide to Antibiotic Therapy =====
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 This capillaroscopic score may represent a feasible and simple tool in SSc patients' assessment. The routinely use of this parameter might permit to recognize and to preventively treat SSc patients at high risk to develop digital ulcers.  (({{pubmed>long:18854881}}))   This capillaroscopic score may represent a feasible and simple tool in SSc patients' assessment. The routinely use of this parameter might permit to recognize and to preventively treat SSc patients at high risk to develop digital ulcers.  (({{pubmed>long:18854881}}))  
  
 +===== interview =====
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 +<html>
 +<div class="patientinterviews">
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 +<div class="patientinterviewbox">
 +<div class="patientinterviewimage"></html>{{:home:patients:alan_cantwell.gif?nolink|}}<html></div>
 +<div class="patientinterviewtext">
 +<div class="patientinterviewname"></html>Alan Cantwell<html></div></html>
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 +scleroderma
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 +Read the [[http://bacteriality.com/2007/09/cantwell/|interview]]
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 +<html></div></div>
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 +<br clear="left" />
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 +</div>
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 +Interviews of patients with other diseases are [[home:patients:patient_interviews|also available]].
 +
 +===== Patient =====
  
  
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 look  for content in https://www.marshallprotocol.com/search.php?s=1&q=Scleroderma&forum_id=35 look  for content in https://www.marshallprotocol.com/search.php?s=1&q=Scleroderma&forum_id=35
  
-//fix**// reports Thu Oct 9th, 2014  "Youngest daughter Lyme/Scleroderma/RA (age 18) has been on the MP for 5 years and 6 months. Massive improvement. Very occasional, very low grade IP remains, approx. 90% well"+fix** reports Thu Oct 9th, 2014  "Youngest daughter Lyme/Scleroderma/RA (age 18) has been on the MP for 5 years and 6 months. Massive improvement. Very occasional, very low grade IP remains, approx. 90% well"
  
-//Dixie// posted Tue Jan 24th, 2012 17:44 to baypilot (Jen?)+ 
 +Dixie posted Tue Jan 24th, 2012 17:44 to baypilot (Jen?)
 "I had hard white bumps on my right eyelid that is a result of calcification due to scleroderma.  Within a few months of starting MP, they disappeared." "I had hard white bumps on my right eyelid that is a result of calcification due to scleroderma.  Within a few months of starting MP, they disappeared."
  
-//Dixie// "I was leaning towards getting mega IV doses of clinda because my scleroderma symptoms are worsening...   ...I  think that I have Sine Scleroderma. "Fri Dec 3rd, 2010 00:46 1 yr anniv.+ 
 + 
 +Dixie "I was leaning towards getting mega IV doses of clinda because my scleroderma symptoms are worsening...   ...I  think that I have Sine Scleroderma. "Fri Dec 3rd, 2010 00:46 1 yr anniv. 
 + 
  
 I am tempted to start a regimen with herbs.  I know that they are contraindicated with MP, but I know of someone that is doing both.  She has Lymes and Scleroderma and has done quite well on the dual regimen.  She gets her herbs from an herbalist/acupuncturist.  She has been on MP for 2 years and has been taking herbs during that time too.   I am tempted to start a regimen with herbs.  I know that they are contraindicated with MP, but I know of someone that is doing both.  She has Lymes and Scleroderma and has done quite well on the dual regimen.  She gets her herbs from an herbalist/acupuncturist.  She has been on MP for 2 years and has been taking herbs during that time too.  
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 (SDJoy Dixie: The fact that you have Scleroderma certainly could explain the increasing issues with your lungs. That is a difficult disease to say the least, and then you apparently have advanced Sarcoidosis on top of that. We do not necessarily get better the first 2-3 years (at least) on the MP. We usually have a lot of IP and feel worse before we begin to feel better. It takes many (but not all) of us some time on the MP before our symptoms get better, and as you know, Scleroderma can do a lot of damage to organs. And as I'm sure you know there are no other good options (steroids, etc.) Hang in there (and follow the guidelines and advice carefully) and in the next couple years you should see some gradual improvements in your symptoms and then eventually larger improvements and real reversal of the disease process. The Dr. in Vermont is correct; it could/will definitely take some time to reverse the scleroderma's effects in your lungs. As far as the MP goes, perseverance is definitely a requirement! ) (SDJoy Dixie: The fact that you have Scleroderma certainly could explain the increasing issues with your lungs. That is a difficult disease to say the least, and then you apparently have advanced Sarcoidosis on top of that. We do not necessarily get better the first 2-3 years (at least) on the MP. We usually have a lot of IP and feel worse before we begin to feel better. It takes many (but not all) of us some time on the MP before our symptoms get better, and as you know, Scleroderma can do a lot of damage to organs. And as I'm sure you know there are no other good options (steroids, etc.) Hang in there (and follow the guidelines and advice carefully) and in the next couple years you should see some gradual improvements in your symptoms and then eventually larger improvements and real reversal of the disease process. The Dr. in Vermont is correct; it could/will definitely take some time to reverse the scleroderma's effects in your lungs. As far as the MP goes, perseverance is definitely a requirement! )
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 Yes, I think that I have a double whammy.  It's interesting that I was diagnosed with sarcoidosis first and six months into the MP was diagnosed with scleroderma.  The physician's know so little about chronic illness and couldn't explain the lining issues with my lungs and a prolapsed urethra, which is all from the scleroderma.  It was a disappointment because I first thought that all symptoms were from sarc. Yes, I think that I have a double whammy.  It's interesting that I was diagnosed with sarcoidosis first and six months into the MP was diagnosed with scleroderma.  The physician's know so little about chronic illness and couldn't explain the lining issues with my lungs and a prolapsed urethra, which is all from the scleroderma.  It was a disappointment because I first thought that all symptoms were from sarc.
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-//Bobsyouruncle // ec 2009 6  months in +Bobsyouruncle  ec 2009 6  months in 
 I noticed this week that the scleroderma on my foot it healing up slowly. However, my skin in generally in poor shape with infected folices on my chest, legs and back often. Small wart-like skin-colored growths continue to appear (they have been for long time, new ones keep arriving).  I noticed this week that the scleroderma on my foot it healing up slowly. However, my skin in generally in poor shape with infected folices on my chest, legs and back often. Small wart-like skin-colored growths continue to appear (they have been for long time, new ones keep arriving). 
  
  
-//Elijuh // as new member+ 
 + 
 +Elijuh  as new member
 " "
 Last July after being on Minocin for a year for my Scleroderma, I realized I had Lyme also.  " Last July after being on Minocin for a year for my Scleroderma, I realized I had Lyme also.  "
  
-**//Prof// M** Scleroderma is a Th1 disease. It is suspected to be due to inappropriate activity of the collagen oligomeric matrix protein (COMP) during the formation of the skin. COMP is a protein which relies upon Vitamin D, at least in part, for its stability. You might even see improvement when you cut your daughter's 25-D down to more reasonable levels, but I don't want to raise your hopes too much just yet:) Scleroderma is unlikely to to go away overnight:)+ 
 + 
 +Prof M Scleroderma is a Th1 disease. It is suspected to be due to inappropriate activity of the collagen oligomeric matrix protein (COMP) during the formation of the skin. COMP is a protein which relies upon Vitamin D, at least in part, for its stability. You might even see improvement when you cut your daughter's 25-D down to more reasonable levels, but I don't want to raise your hopes too much just yet:) Scleroderma is unlikely to to go away overnight:)
  
 Dr Alan Cantwell spent a lot of his professional life looking at the links between Th1 bacteria and Scleroderma. You will find one of his papers on the subject at http://www.JOIMR.org (search for 'scleroderma' on that page) Dr Alan Cantwell spent a lot of his professional life looking at the links between Th1 bacteria and Scleroderma. You will find one of his papers on the subject at http://www.JOIMR.org (search for 'scleroderma' on that page)
  
  
-//Elijuh//+ 
 + 
 + 
 +Elijuh
 The vomiting is not something new and I am pretty sure it isn't totally IP.  It is partly the gastroparesis from the Scleroderma.  It always gets worse in March/April and then again in the fall.  The vomiting is not something new and I am pretty sure it isn't totally IP.  It is partly the gastroparesis from the Scleroderma.  It always gets worse in March/April and then again in the fall. 
  
home/diseases/scleroderma.txt · Last modified: 09.14.2022 by 127.0.0.1
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