Question:

Just where is this doctor! What is her name? I don’t quite remember her/him. Did you say Dr. Vasquez? Hmmmmm! Would be interesting to know if she really exists or he really exists.

Response:

Doris, I had noticed she was one of the doctors with the SCTC, Scleroderma Clinical Trials Consortium. Check this page: http://www.sctc-online.org/usa.htm She’s under Connecticut. I have also seen her name as co-author of several medical articles around the internet. jude "Doris" <dreich…@toad.net> wrote in message

news:GmCjc.23$I25.3209@news.abs.net… – Hide quoted text — Show quoted text -> Just where is this doctor! What is her name? I don’t quite remember her/him. > Did you say Dr. Vasquez? Hmmmmm! Would be interesting to know if she really > exists or he really exists.

Response:

Dr Vasquez-Abad is a scleroderma researcher at the University of Connecticut Health Center.  She’s a member of the SCTC and has received research grant money from the Scleroderma Foundation in the past. – Hide quoted text — Show quoted text -Doris wrote: >Just where is this doctor! What is her name? I don’t quite remember her/him. >Did you say Dr. Vasquez? Hmmmmm! Would be interesting to know if she really >exists or he really exists.

Response:

  Thanks Amie, I just couldn’t recall-   Doris   "Amelia Yaussy" <am…@blackmule.com> wrote in message news:NYWdnXtA8ryIORLdRVn-jg@wideopenwest.com…   > Dr Vasquez-Abad is a scleroderma researcher at the University of   > Connecticut Health Center.  She’s a member of the SCTC and has received   > research grant money from the Scleroderma Foundation in the past.   >   > Doris wrote:   >   > >Just where is this doctor! What is her name? I don’t quite remember her/him.   > >Did you say Dr. Vasquez? Hmmmmm! Would be interesting to know if she really   > >exists or he really exists.   > >   > >   > >   > >   > >   >

Response:

- Hide quoted text — Show quoted text -"Judy Tarro" <auntj…@bak.rr.com> wrote in message <news:SjYjc.7557$4D1.5171@twister.socal.rr.com>… > Doris, > I had noticed she was one of the doctors with the SCTC, Scleroderma Clinical > Trials Consortium. Check this page: > http://www.sctc-online.org/usa.htm > She’s under Connecticut. > I have also seen her name as co-author of several medical articles around the > internet. > jude > "Doris" <dreich…@toad.net> wrote in message > news:GmCjc.23$I25.3209@news.abs.net… > > Just where is this doctor! What is her name? I don’t quite remember her/him. > > Did you say Dr. Vasquez? Hmmmmm! Would be interesting to know if she really > > exists or he really exists.

Hi there everyone,     I recall her being online in the mid nineties.  She had a small website with her telephone number and address.  She was quoted quite often, then she suddenly disappeared.  Maybe she stopped participating once she was established.  These doctors are so busy.  I always question how well qualified a doctor that appears to have the time to "advertise" is.  I never used to miss the quarterly scleroderma meetings in Long Island New York.  They were sponsored by the Tri-State chapter of the SF.  An enormous amount of work went in to tracking down doctors and other health care professionals to be guests.  There were always last minute cancellations.  My rheumatologist is quite well known.  He has discontinued taking on new patients.  I often worry because almost all of the well established rheums who specialise in scleroderma are getting really up there in age.  I also am concerned about my rheum retiring.  He already has taken a young doctor in to his practice.  There was a time when he would never work with someone else.  I guess it says something about the progress that has been made in treating scleroderma symtomatically.  Hopefully there will be a cure within our life time. If not ours at least our childrens. All my best,      Mia

Response:

Good rheumies, no matter what their sub-specialty is, are as scarce as hens’ teeth. When I lived in St. Joe, Missouri (75,000 population & 25,000 in the surrounding area) there were two rheumies. Nell On 1 May 2004 01:17:33 -0700, mia…@aol.com (Mia) wrote: – Hide quoted text — Show quoted text ->"Judy Tarro" <auntj…@bak.rr.com> wrote in message <news:SjYjc.7557$4D1.5171@twister.socal.rr.com>… >> Doris, >> I had noticed she was one of the doctors with the SCTC, Scleroderma Clinical >> Trials Consortium. Check this page: >> http://www.sctc-online.org/usa.htm >> She’s under Connecticut. >> I have also seen her name as co-author of several medical articles around the >> internet. >> jude >> "Doris" <dreich…@toad.net> wrote in message >> news:GmCjc.23$I25.3209@news.abs.net… >> > Just where is this doctor! What is her name? I don’t quite remember her/him. >> > Did you say Dr. Vasquez? Hmmmmm! Would be interesting to know if she really >> > exists or he really exists. >Hi there everyone, >    I recall her being online in the mid nineties.  She had a small >website with her telephone number and address.  She was quoted quite >often, then she suddenly disappeared.  Maybe she stopped participating >once she was established.  These doctors are so busy.  I always >question how well qualified a doctor that appears to have the time to >"advertise" is.  I never used to miss the quarterly scleroderma >meetings in Long Island New York.  They were sponsored by the >Tri-State chapter of the SF.  An enormous amount of work went in to >tracking down doctors and other health care professionals to be >guests.  There were always last minute cancellations.  My >rheumatologist is quite well known.  He has discontinued taking on new >patients.  I often worry because almost all of the well established >rheums who specialise in scleroderma are getting really up there in >age.  I also am concerned about my rheum retiring.  He already has >taken a young doctor in to his practice.  There was a time when he >would never work with someone else.  I guess it says something about >the progress that has been made in treating scleroderma >symtomatically.  Hopefully there will be a cure within our life time. >If not ours at least our childrens. >All my best,      Mia

Response:

Question:

On Wed, 21 Apr 2004 09:23:40 -0400, Nell <mildredskidnospam_at…@comcast.net> wrote: >And yet his paintings stayed bright. Many an artist would have felt >such gloom, the scleroderma being the shot that got him. But "While >artists’ skills often diminish as they age, Klee’s grew stronger. "In >a purely visual sense, he was still full of creativity" until the end >of his life, Rewald said" >He didn’t let the political or his physical circumstances stop him. >Nell

How well I can relate to that. While having CREST has done a number on my ability to play trumpet and fashion stained glass. One ability it can not tamper with is my ability to teach both these disciplines. It’s a matter of accepting and dealing with CREST and making do with what I have that helped to prevent my spirit from shattering. I loved being on the bandstand and I loved being able to cut glass for hours on end. But since I can’t do either for any great length of time I’ll be happy with what I can do and make up the shortfall by passing on my knowledge. That way, part of me will still exist thru my students learned skills. I recently saw an episode on MASH about a soldier whose hand was severely injured. Prior to the war, he was a concert pianist. Naturally, he was devastated by the apparent fact that his piano playing days are over. However, Dr. Charles Emerson Winchester convinced him otherwise when he obtained some piano works written to be played with only the left hand. While we never will know the soldier’s fate afterwards, the story did make a point. That point being that not all is never totally lost. Like they say, when God closes one door, He opens another. If you make the effort to seek it, you’ll find it. BOB – In GOD We Trust

Response:

"Hounded by the Nazis, Klee took refuge in 1933 in Bern, Switzerland. His works in German museums were confiscated, his livelihood disrupted and he was diagnosed in 1936 with incurable scleroderma, a chronic autoimmune disease." http://edition.cnn.com/2004/TRAVEL/DESTINATIONS/04/02/klee.exhibit.ap…

Response:

What a wonderful attitude. And I imagine it didn’t come about overnight. I haven’t seen that episode of MASH in years but I know the one you’re talking about. It’s one that’s not easy to forget. Thanks Nell On Wed, 21 Apr 2004 13:52:21 GMT, Robert DeSavage – Hide quoted text — Show quoted text -<beaglebob6…@comcast.ten> wrote: >On Wed, 21 Apr 2004 09:23:40 -0400, Nell ><mildredskidnospam_at…@comcast.net> wrote: >>And yet his paintings stayed bright. Many an artist would have felt >>such gloom, the scleroderma being the shot that got him. But "While >>artists’ skills often diminish as they age, Klee’s grew stronger. "In >>a purely visual sense, he was still full of creativity" until the end >>of his life, Rewald said" >>He didn’t let the political or his physical circumstances stop him. >>Nell >How well I can relate to that. While having CREST has done a number on >my ability to play trumpet and fashion stained glass. One ability it >can not tamper with is my ability to teach both these disciplines. >It’s a matter of accepting and dealing with CREST and making do with >what I have that helped to prevent my spirit from shattering. I loved >being on the bandstand and I loved being able to cut glass for hours >on end. But since I can’t do either for any great length of time I’ll >be happy with what I can do and make up the shortfall by passing on my >knowledge. That way, part of me will still exist thru my students >learned skills. >I recently saw an episode on MASH about a soldier whose hand was >severely injured. Prior to the war, he was a concert pianist. >Naturally, he was devastated by the apparent fact that his piano >playing days are over. However, Dr. Charles Emerson Winchester >convinced him otherwise when he obtained some piano works written to >be played with only the left hand. While we never will know the >soldier’s fate afterwards, the story did make a point. That point >being that not all is never totally lost. Like they say, when God >closes one door, He opens another. If you make the effort to seek it, >you’ll find it. >BOB >- >In GOD We Trust

Response:

There is a tendency in his older works to deal with harsher issues, like death and war, and to be of simpler construction, but who’s to say if it was from being ill, or just the direction his art took naturally with age and the political deterioration in Europe? I think what’s most amazing is that after diagnosis, there was a dip in productivity, and then he poured out the works more than ever before, despite what we know he had to be suffering, well before any Prilosec, calcium channel blockers, and NSAIDs.   Dr Varga, Dr Dotz, and Caroline Keller have a great article from the SF "Scleroderma Voice" 2001, issue 4 that poses the likelihood that he suffered from pulmonary fibrosis and pulmonary hypertension because of information that he had shortness of breath and fatigue on even minor exertion. He apparently coudn’t let his body interfere with the things his art had to say! – Hide quoted text — Show quoted text -Nell wrote: >And yet his paintings stayed bright. Many an artist would have felt >such gloom, the scleroderma being the shot that got him. But "While >artists’ skills often diminish as they age, Klee’s grew stronger. "In >a purely visual sense, he was still full of creativity" until the end >of his life, Rewald said" >He didn’t let the political or his physical circumstances stop him. >Nell >On Thu, 15 Apr 2004 09:24:11 -0400, Amelia Yaussy ><am…@blackmule.com> wrote: >>"Hounded by the Nazis, Klee took refuge in 1933 in Bern, Switzerland. >>His works in German museums were confiscated, his livelihood disrupted >>and he was diagnosed in 1936 with incurable scleroderma, a chronic >>autoimmune disease." >>http://edition.cnn.com/2004/TRAVEL/DESTINATIONS/04/02/klee.exhibit.ap…

Response:

On Thu, 22 Apr 2004 18:30:55 -0400, Nell <mildredskidnospam_at…@comcast.net> wrote: >What a wonderful attitude. And I imagine it didn’t come about >overnight. >I haven’t seen that episode of MASH in years but I know the one you’re >talking about. It’s one that’s not easy to forget. >Thanks >Nell

It can be an emotional tug of war where it’s easy to be pulled to the negative side. I have days when I’m despondent where I think of myself being a ‘has been’. What pulls me back to the positive is the notion that it’s better to be a has been than a never been. – In GOD We Trust

Response:

And yet his paintings stayed bright. Many an artist would have felt such gloom, the scleroderma being the shot that got him. But "While artists’ skills often diminish as they age, Klee’s grew stronger. "In a purely visual sense, he was still full of creativity" until the end of his life, Rewald said" He didn’t let the political or his physical circumstances stop him. Nell On Thu, 15 Apr 2004 09:24:11 -0400, Amelia Yaussy – Hide quoted text — Show quoted text -<am…@blackmule.com> wrote: >"Hounded by the Nazis, Klee took refuge in 1933 in Bern, Switzerland. >His works in German museums were confiscated, his livelihood disrupted >and he was diagnosed in 1936 with incurable scleroderma, a chronic >autoimmune disease." >http://edition.cnn.com/2004/TRAVEL/DESTINATIONS/04/02/klee.exhibit.ap…

Response:

Question:

Granted, but a nurse’s visit isn’t a replacement for a doctor’s appointment. – Hide quoted text — Show quoted text -Robert DeSavage wrote: >On Thu, 15 Apr 2004 12:52:42 -0400, "metoo" <liy…@nac.net> wrote: >>What RUBBISH!! To count nurse’s visits the same as a visit to the dr.’s >>office!!! >>Shame on Medicaid! They really stink! >>jo >>nj >>"Amelia Yaussy" <am…@blackmule.com> wrote in message >>news:e5qdneaXF5z1EOPdRVn-uQ@wideopenwest.com… >>>"For Dorothy Graves, every day is a battle. For the past two years, the >>>Lady’s Island resident has fought the effects of scleroderma, a chronic >>>connective-tissue disease that has caused the hardening of her skin and >>>internal organs." >>>http://www.beaufortgazette.com/local_news/story/3501537p-3106165c.html >Perhaps a nurse as opposed to a doctor is a better deal. Not only to >Medicaid, but to the patient as well. >- >In GOD We Trust

Response:

A nurse practicioner would have been a slightly different story. At least then she would have had an almost doctor. Still wouldn’t take the place but still. . . . Poor woman. Nell On Fri, 16 Apr 2004 10:06:30 -0400, Amelia Yaussy – Hide quoted text — Show quoted text -<am…@blackmule.com> wrote: >Granted, but a nurse’s visit isn’t a replacement for a doctor’s appointment. >Robert DeSavage wrote: >>On Thu, 15 Apr 2004 12:52:42 -0400, "metoo" <liy…@nac.net> wrote: >>>What RUBBISH!! To count nurse’s visits the same as a visit to the dr.’s >>>office!!! >>>Shame on Medicaid! They really stink! >>>jo >>>nj >>>"Amelia Yaussy" <am…@blackmule.com> wrote in message >>>news:e5qdneaXF5z1EOPdRVn-uQ@wideopenwest.com… >>>>"For Dorothy Graves, every day is a battle. For the past two years, the >>>>Lady’s Island resident has fought the effects of scleroderma, a chronic >>>>connective-tissue disease that has caused the hardening of her skin and >>>>internal organs." >>>>http://www.beaufortgazette.com/local_news/story/3501537p-3106165c.html >>Perhaps a nurse as opposed to a doctor is a better deal. Not only to >>Medicaid, but to the patient as well. >>- >>In GOD We Trust

Response:

What RUBBISH!! To count nurse’s visits the same as a visit to the dr.’s office!!! Shame on Medicaid! They really stink! jo nj "Amelia Yaussy" <am…@blackmule.com> wrote in message

news:e5qdneaXF5z1EOPdRVn-uQ@wideopenwest.com… – Hide quoted text — Show quoted text -> "For Dorothy Graves, every day is a battle. For the past two years, the > Lady’s Island resident has fought the effects of scleroderma, a chronic > connective-tissue disease that has caused the hardening of her skin and > internal organs." > http://www.beaufortgazette.com/local_news/story/3501537p-3106165c.html

Response:

"For Dorothy Graves, every day is a battle. For the past two years, the Lady’s Island resident has fought the effects of scleroderma, a chronic connective-tissue disease that has caused the hardening of her skin and internal organs." http://www.beaufortgazette.com/local_news/story/3501537p-3106165c.html

Response:

On Thu, 15 Apr 2004 12:52:42 -0400, "metoo" <liy…@nac.net> wrote: >What RUBBISH!! To count nurse’s visits the same as a visit to the dr.’s >office!!! >Shame on Medicaid! They really stink! >jo >nj >"Amelia Yaussy" <am…@blackmule.com> wrote in message >news:e5qdneaXF5z1EOPdRVn-uQ@wideopenwest.com… >> "For Dorothy Graves, every day is a battle. For the past two years, the >> Lady’s Island resident has fought the effects of scleroderma, a chronic >> connective-tissue disease that has caused the hardening of her skin and >> internal organs." >> http://www.beaufortgazette.com/local_news/story/3501537p-3106165c.html

Perhaps a nurse as opposed to a doctor is a better deal. Not only to Medicaid, but to the patient as well. – In GOD We Trust

Response:

Question:

Are there any treatments available to improve the dark oval patches of dark skin I have on my neck and lower back?  From my research I believe I have morphea but I am having an incredible time getting diagnosed. Thanks for any advice. -H

Response:

This article has some treatments listed, but it’s dependent on a good diagnosis. http://www.emedicine.com/med/topic3132.htm#section~treatment Are you near a major university medical center?  You’re more likely to find a doc there who is familiar with scleroderma. – Hide quoted text — Show quoted text -HENK VISSER wrote: >Are there any treatments available to improve the dark oval patches of dark >skin I have on my neck and lower back?  From my research I believe I have >morphea but I am having an incredible time getting diagnosed. >Thanks for any advice. >-H

Response:

Question:

"Chaos Hill" <mrsmu…@hotmail.com> wrote in message <news:u_adnWhtSOYxXYDdRVn-vg@centurytel.net>… > Now this one I know! At least for me – L Lysine capsules worked like wow – > if you are in a break out three capsulse the first day and then two a day > aftwrwards. Amaranth is a grain that is naturally high in this amino and > found in health food stores or natural food departments in grocery stores. > Since eating this grain regularly I have not had to take the capsules. > Hope this works as welll for you > Leslie

How do you eat the amaranth? Do you make things from the flour or buy amaranth graham crackers, or what?

Response:

I buy cereal – flakes, they are rather good and somewhat chewy but crispy as well – you don’t have to eat an entire bowl of them, just mix in with regular whtever – i use a granola mix that comes with amaranth flakes in it….. it is called Triple Berry Crunch and comes only in bulk….. you can buy flour as well, but so far my attempts at baking with anything gluten free has not been good.  anyway the cereal I buy is in our grocery store natural foods department – you can ask your grocer or check health food stores. the capsules are in vitamin/herbal supplement section and not expensive at all either. hope it works as well for you Leslie "Pell Nilly" <pellmellwillyni…@hotmail.com> wrote in message

news:a3ff833b.0402071538.14a6cf8@posting.google.com… > "Chaos Hill" <mrsmu…@hotmail.com> wrote in message

<news:u_adnWhtSOYxXYDdRVn-vg@centurytel.net>… – Hide quoted text — Show quoted text -> > Now this one I know! At least for me – L Lysine capsules worked like wow – > > if you are in a break out three capsulse the first day and then two a day > > aftwrwards. Amaranth is a grain that is naturally high in this amino and > > found in health food stores or natural food departments in grocery stores. > > Since eating this grain regularly I have not had to take the capsules. > > Hope this works as welll for you > > Leslie > How do you eat the amaranth? Do you make things from the flour or buy > amaranth graham crackers, or what?

Response:

Hi Leslie, Do you ever cook the amaranth seeds and eat them that way? I have done that. In fact, I am doing it this morning. It can be eaten as a dessert when it is mixed with fruit. Buckwheat and quinoa are others I have tried. I like the flavour of both. They are reported to be very healthy foods. BJ-Sk. Canada "Chaos Hill" <mrsmu…@hotmail.com> wrote in message

news:Cdydna5NLrDOcbXdRVn-iQ@centurytel.net… – Hide quoted text — Show quoted text -> I buy cereal – flakes, they are rather good and somewhat chewy but crispy as > well – you don’t have to eat an entire bowl of them, just mix in with > regular whtever – i use a granola mix that comes with amaranth flakes in > it….. it is called Triple Berry Crunch and comes only in bulk….. > you can buy flour as well, but so far my attempts at baking with anything > gluten free has not been good.  anyway the cereal I buy is in our grocery > store natural foods department – you can ask your grocer or check health > food stores. the capsules are in vitamin/herbal supplement section and not > expensive at all either. > hope it works as well for you > Leslie > "Pell Nilly" <pellmellwillyni…@hotmail.com> wrote in message > news:a3ff833b.0402071538.14a6cf8@posting.google.com… > > "Chaos Hill" <mrsmu…@hotmail.com> wrote in message > <news:u_adnWhtSOYxXYDdRVn-vg@centurytel.net>… > > > Now this one I know! At least for me – L Lysine capsules worked like > wow – > > > if you are in a break out three capsulse the first day and then two a > day > > > aftwrwards. Amaranth is a grain that is naturally high in this amino and > > > found in health food stores or natural food departments in grocery > stores. > > > Since eating this grain regularly I have not had to take the capsules. > > > Hope this works as welll for you > > > Leslie > > How do you eat the amaranth? Do you make things from the flour or buy > > amaranth graham crackers, or what?

Response:

Hello again, long time no writing.  I haven’t been back to the group for a couple of years, but I have been having a little bit of a hard time lately with the MCTD.  Now they say I have scleroderma, SLE, polymyositis, Sjogren’s, and fibro.  I am taking pred, plaquenil, methotrexate, imuran, folic acid, topamax, tenormin, verapamil, nexium, zyrtec, zoloft, bactrim, bcp, and fioricet, along with vits d & e and calcium and acidophilus. Now to my question:  How can I avoid the mouth sores through dietary changes?  I need the meds I take, but the methotrexate is causing painful mouth sores, even on just 10mg a week.  My rheumy upped the folic acid to 3mg a day, but it hasn’t helped.  I can’t eat spicy or fried foods anymore because of my acid reflux, but I can’t eat on one side of my mouth today because I have a sore on that side.  Help! Thank you so much for listening to my whining.  Mel

Response:

Now this one I know! At least for me – L Lysine capsules worked like wow – if you are in a break out three capsulse the first day and then two a day aftwrwards. Amaranth is a grain that is naturally high in this amino and found in health food stores or natural food departments in grocery stores. Since eating this grain regularly I have not had to take the capsules. Hope this works as welll for you Leslie "Melanie" <melan…@yahoo.com> wrote in message

news:cbb0e9be.0402011711.290cb45e@posting.google.com… – Hide quoted text — Show quoted text -> Hello again, long time no writing.  I haven’t been back to the group > for a couple of years, but I have been having a little bit of a hard > time lately with the MCTD.  Now they say I have scleroderma, SLE, > polymyositis, Sjogren’s, and fibro.  I am taking pred, plaquenil, > methotrexate, imuran, folic acid, topamax, tenormin, verapamil, > nexium, zyrtec, zoloft, bactrim, bcp, and fioricet, along with vits d > & e and calcium and acidophilus. > Now to my question:  How can I avoid the mouth sores through dietary > changes?  I need the meds I take, but the methotrexate is causing > painful mouth sores, even on just 10mg a week.  My rheumy upped the > folic acid to 3mg a day, but it hasn’t helped.  I can’t eat spicy or > fried foods anymore because of my acid reflux, but I can’t eat on one > side of my mouth today because I have a sore on that side.  Help! > Thank you so much for listening to my whining.  Mel

Response:

Don’t get any mouth ulcers from MTX, but I too have heard that lysine (an amino acid) is helpful. I know someone whose mouth ulcers improved with apple juice, since apples contain lysine.  It’s a pretty big dose folic acid you’re on considering the MTX dose. I’m on 22.5 mg MTX and 10 mg folic acid/weekly. Some people on the arthritis group with ulcer problems have been put on folinic acid (leukovorin) when the folic acid didn’t help enough. From what I’ve seen, they take 10 mg leukovorin on the day after MTX. It’s prescription only, so you have to ask your dr about that one. Nina "Chaos Hill" <mrsmu…@hotmail.com> skrev i meddelandet news:u_adnWhtSOYxXYDdRVn-vg@centurytel.net… – Hide quoted text — Show quoted text -> Now this one I know! At least for me – L Lysine capsules worked like wow – > if you are in a break out three capsulse the first day and then two a day > aftwrwards. Amaranth is a grain that is naturally high in this amino and > found in health food stores or natural food departments in grocery stores. > Since eating this grain regularly I have not had to take the capsules. > Hope this works as welll for you > Leslie > "Melanie" <melan…@yahoo.com> wrote in message > news:cbb0e9be.0402011711.290cb45e@posting.google.com… > > Hello again, long time no writing.  I haven’t been back to the group > > for a couple of years, but I have been having a little bit of a hard > > time lately with the MCTD.  Now they say I have scleroderma, SLE, > > polymyositis, Sjogren’s, and fibro.  I am taking pred, plaquenil, > > methotrexate, imuran, folic acid, topamax, tenormin, verapamil, > > nexium, zyrtec, zoloft, bactrim, bcp, and fioricet, along with vits d > > & e and calcium and acidophilus. > > Now to my question:  How can I avoid the mouth sores through dietary > > changes?  I need the meds I take, but the methotrexate is causing > > painful mouth sores, even on just 10mg a week.  My rheumy upped the > > folic acid to 3mg a day, but it hasn’t helped.  I can’t eat spicy or > > fried foods anymore because of my acid reflux, but I can’t eat on one > > side of my mouth today because I have a sore on that side.  Help! > > Thank you so much for listening to my whining.  Mel

Response:

My wife takes 1MG of MTX weekly via injection.  She takes 3MG of folic acid daily, 4 on injection day.  No mouth sores.  Also any excess Folic acid is eliminated in urine. Lee

Response:

I use warm salt water on mine.

Response:

I don’t know a way to prevent them, but something that does help ease the pain is called   Ulcer Ease.   It is a mouth rinse and is oftern used by people going through chemo. You can get over the counter at your druggist.  Just ask the pharmacist. Hope you feel better.

Response:

Thanks all for the advice.  I’ve got a monster migraine, need to get some sleep now.  Mel – Hide quoted text — Show quoted text -"Chaos Hill" <mrsmu…@hotmail.com> wrote in message <news:TsudnfoVcs51kr3dRVn-ug@centurytel.net>… > never had any trouble with sleepiness from the L lysine – the only thing I > have ever noticed was at the beginning if I waited too long and the sores > erupted I got a bit of tingling from takeing three caps….. never again > though, never let them get that bad…. > "Candi Bowen" <reen…@neo.rr.com> wrote in message > news:w4UTb.131010$f97.84653@fe3.columbus.rr.com… > > I don’t know how to prevent them but for those buggy nasal/mouth sores >  that > > are ’supposedly’ painlesss – yeah right – I’ve used Campho-phynique (sp?), > > anyway, oil of camphor,  applied with a Q-tip & it seems to heal them > > quicker. Burns a bit tho. In the past 15 yrs I’ve noticed that those sores > > can be a precursor of a flare . . > > My doc told me that l-lysine is the major ingredient in sleeping pills & >  was > > surprised that I didn’t immediately fall asleep after ingestion. > > Candi > > ———- > > In article <kLOTb.81431$dP1.210…@newsc.telia.net>, "NW" > > <ninb…@MJAUyahoo.se> wrote: > > >Don’t get any mouth ulcers from MTX, but I too have heard that lysine (an > > >amino acid) is helpful. I know someone whose mouth ulcers improved with > > >apple juice, since apples contain lysine.  It’s a pretty big dose folic >  acid > > >you’re on considering the MTX dose. I’m on 22.5 mg MTX and 10 mg folic > > >acid/weekly. Some people on the arthritis group with ulcer problems have > > >been put on folinic acid (leukovorin) when the folic acid didn’t help > > >enough. From what I’ve seen, they take 10 mg leukovorin on the day after > > >MTX. It’s prescription only, so you have to ask your dr about that one. > > >Nina > > >"Chaos Hill" <mrsmu…@hotmail.com> skrev i meddelandet > > >news:u_adnWhtSOYxXYDdRVn-vg@centurytel.net… > > >> Now this one I know! At least for me – L Lysine capsules worked like >  wow – > > >> if you are in a break out three capsulse the first day and then two a >  day > > >> aftwrwards. Amaranth is a grain that is naturally high in this amino >  and > > >> found in health food stores or natural food departments in grocery >  stores. > > >> Since eating this grain regularly I have not had to take the capsules. > > >> Hope this works as welll for you > > >> Leslie > > >> "Melanie" <melan…@yahoo.com> wrote in message > > >> news:cbb0e9be.0402011711.290cb45e@posting.google.com… > > >> > Hello again, long time no writing.  I haven’t been back to the group > > >> > for a couple of years, but I have been having a little bit of a hard > > >> > time lately with the MCTD.  Now they say I have scleroderma, SLE, > > >> > polymyositis, Sjogren’s, and fibro.  I am taking pred, plaquenil, > > >> > methotrexate, imuran, folic acid, topamax, tenormin, verapamil, > > >> > nexium, zyrtec, zoloft, bactrim, bcp, and fioricet, along with vits d > > >> > & e and calcium and acidophilus. > > >> > Now to my question:  How can I avoid the mouth sores through dietary > > >> > changes?  I need the meds I take, but the methotrexate is causing > > >> > painful mouth sores, even on just 10mg a week.  My rheumy upped the > > >> > folic acid to 3mg a day, but it hasn’t helped.  I can’t eat spicy or > > >> > fried foods anymore because of my acid reflux, but I can’t eat on one > > >> > side of my mouth today because I have a sore on that side.  Help! > > >> > Thank you so much for listening to my whining.  Mel

Response:

never had any trouble with sleepiness from the L lysine – the only thing I have ever noticed was at the beginning if I waited too long and the sores erupted I got a bit of tingling from takeing three caps….. never again though, never let them get that bad…. "Candi Bowen" <reen…@neo.rr.com> wrote in message

news:w4UTb.131010$f97.84653@fe3.columbus.rr.com… – Hide quoted text — Show quoted text -> I don’t know how to prevent them but for those buggy nasal/mouth sores that > are ’supposedly’ painlesss – yeah right – I’ve used Campho-phynique (sp?), > anyway, oil of camphor,  applied with a Q-tip & it seems to heal them > quicker. Burns a bit tho. In the past 15 yrs I’ve noticed that those sores > can be a precursor of a flare . . > My doc told me that l-lysine is the major ingredient in sleeping pills & was > surprised that I didn’t immediately fall asleep after ingestion. > Candi > ———- > In article <kLOTb.81431$dP1.210…@newsc.telia.net>, "NW" > <ninb…@MJAUyahoo.se> wrote: > >Don’t get any mouth ulcers from MTX, but I too have heard that lysine (an > >amino acid) is helpful. I know someone whose mouth ulcers improved with > >apple juice, since apples contain lysine.  It’s a pretty big dose folic acid > >you’re on considering the MTX dose. I’m on 22.5 mg MTX and 10 mg folic > >acid/weekly. Some people on the arthritis group with ulcer problems have > >been put on folinic acid (leukovorin) when the folic acid didn’t help > >enough. From what I’ve seen, they take 10 mg leukovorin on the day after > >MTX. It’s prescription only, so you have to ask your dr about that one. > >Nina > >"Chaos Hill" <mrsmu…@hotmail.com> skrev i meddelandet > >news:u_adnWhtSOYxXYDdRVn-vg@centurytel.net… > >> Now this one I know! At least for me – L Lysine capsules worked like wow – > >> if you are in a break out three capsulse the first day and then two a day > >> aftwrwards. Amaranth is a grain that is naturally high in this amino and > >> found in health food stores or natural food departments in grocery stores. > >> Since eating this grain regularly I have not had to take the capsules. > >> Hope this works as welll for you > >> Leslie > >> "Melanie" <melan…@yahoo.com> wrote in message > >> news:cbb0e9be.0402011711.290cb45e@posting.google.com… > >> > Hello again, long time no writing.  I haven’t been back to the group > >> > for a couple of years, but I have been having a little bit of a hard > >> > time lately with the MCTD.  Now they say I have scleroderma, SLE, > >> > polymyositis, Sjogren’s, and fibro.  I am taking pred, plaquenil, > >> > methotrexate, imuran, folic acid, topamax, tenormin, verapamil, > >> > nexium, zyrtec, zoloft, bactrim, bcp, and fioricet, along with vits d > >> > & e and calcium and acidophilus. > >> > Now to my question:  How can I avoid the mouth sores through dietary > >> > changes?  I need the meds I take, but the methotrexate is causing > >> > painful mouth sores, even on just 10mg a week.  My rheumy upped the > >> > folic acid to 3mg a day, but it hasn’t helped.  I can’t eat spicy or > >> > fried foods anymore because of my acid reflux, but I can’t eat on one > >> > side of my mouth today because I have a sore on that side.  Help! > >> > Thank you so much for listening to my whining.  Mel

Response:

I don’t know how to prevent them but for those buggy nasal/mouth sores that are ’supposedly’ painlesss – yeah right – I’ve used Campho-phynique (sp?), anyway, oil of camphor,  applied with a Q-tip & it seems to heal them quicker. Burns a bit tho. In the past 15 yrs I’ve noticed that those sores can be a precursor of a flare . . My doc told me that l-lysine is the major ingredient in sleeping pills & was surprised that I didn’t immediately fall asleep after ingestion. Candi ———- In article <kLOTb.81431$dP1.210…@newsc.telia.net>, "NW" – Hide quoted text — Show quoted text -<ninb…@MJAUyahoo.se> wrote: >Don’t get any mouth ulcers from MTX, but I too have heard that lysine (an >amino acid) is helpful. I know someone whose mouth ulcers improved with >apple juice, since apples contain lysine.  It’s a pretty big dose folic acid >you’re on considering the MTX dose. I’m on 22.5 mg MTX and 10 mg folic >acid/weekly. Some people on the arthritis group with ulcer problems have >been put on folinic acid (leukovorin) when the folic acid didn’t help >enough. From what I’ve seen, they take 10 mg leukovorin on the day after >MTX. It’s prescription only, so you have to ask your dr about that one. >Nina >"Chaos Hill" <mrsmu…@hotmail.com> skrev i meddelandet >news:u_adnWhtSOYxXYDdRVn-vg@centurytel.net… >> Now this one I know! At least for me – L Lysine capsules worked like wow – >> if you are in a break out three capsulse the first day and then two a day >> aftwrwards. Amaranth is a grain that is naturally high in this amino and >> found in health food stores or natural food departments in grocery stores. >> Since eating this grain regularly I have not had to take the capsules. >> Hope this works as welll for you >> Leslie >> "Melanie" <melan…@yahoo.com> wrote in message >> news:cbb0e9be.0402011711.290cb45e@posting.google.com… >> > Hello again, long time no writing.  I haven’t been back to the group >> > for a couple of years, but I have been having a little bit of a hard >> > time lately with the MCTD.  Now they say I have scleroderma, SLE, >> > polymyositis, Sjogren’s, and fibro.  I am taking pred, plaquenil, >> > methotrexate, imuran, folic acid, topamax, tenormin, verapamil, >> > nexium, zyrtec, zoloft, bactrim, bcp, and fioricet, along with vits d >> > & e and calcium and acidophilus. >> > Now to my question:  How can I avoid the mouth sores through dietary >> > changes?  I need the meds I take, but the methotrexate is causing >> > painful mouth sores, even on just 10mg a week.  My rheumy upped the >> > folic acid to 3mg a day, but it hasn’t helped.  I can’t eat spicy or >> > fried foods anymore because of my acid reflux, but I can’t eat on one >> > side of my mouth today because I have a sore on that side.  Help! >> > Thank you so much for listening to my whining.  Mel

Response:

Question:

Hi Dave, Some great information-keep it coming. I have seen something similar in what I called the "junk books" we all received in the mail. I also have a friend who was seeing a physical therapists and using something similiar like that to put on toothbrushes,  hair brushes and even on some of your kitchenware to keep from sliding. It’s the little things that we learn through the years that helps others. Support groups are great for this-someone always has a idea that might help you leatn to cope in one fashioned or another. Doris "Dave Wilcher" <dwil…@woh.rr.com> wrote in message

news:WLpvb.18334$uw5.11426@fe2.columbus.rr.com… – Hide quoted text — Show quoted text -> This subject has come up before- how do I protect my knuckles? > My skin is stretched quite thin over them, and my brain still > thinks my fingers are straight – so when I reach for something, > I bang my knuckles instead of touching it with my fingertips. > I’ve found a pretty decent solution. I went to a physical therapist > and she gave me some "tubular dressing retainer" – basically > a long roll of nylon/spandex tubing that you can cut to whatever > size you need. Sort of a "sock" for your finger. It’s not real thick, > so it’s not perfect protection, but helps against most accidental > bangs.. I think maybe because I’m wearing something, it reminds > me to be careful! It looks like cotton, and if they get dirty, I just throw > them away and cut some more off the roll. If you cut them a little long, > you can put them on, and roll them down – doubling the thickness. > Anyway, the therapist gave me an empty box, so I could order > more. I searched the internet and came up empty. I called the > company that makes it, and they couldn’t come up with an > on-line company, but gave me a phone number. They didn’t > sell it either. So I emailed the company back, and together > we’ve talked an online store into carrying this product. > The product is AlbaHealth X Span Tubular Dressing Retainer > size 1 (for fingers and toes) > The website is: http://www.bandagesplus.com > They should have them in stock in a week or two. > (I don’t work for either company; they agreed to help, so I > thought I’d spread the word) > dave > — > I support Gov. Howard Dean M.D. for President: > www.deanforamerica.com

Response:

Amelia Yaussy wrote: > Dave, this is WONDERFUL!  Do you mind if I share this info on some > scleroderma message boards and at chat?

Not at all – I told them if they made the product availible that I would try and spread the word, so that would be great! I’m not sure when the Bandages Plus web site will add it (or where on the site it will be – they have a LOT of products, so it’s a little tough to navigate) But I’ll try and keep an eye on it, and post something here if I have more info. dave — I support Gov. Howard Dean M.D. for President: www.deanforamerica.com

Response:

Dave Wilcher wrote: > Amelia Yaussy wrote: >> Dave, this is WONDERFUL!  Do you mind if I share this info on some >> scleroderma message boards and at chat? > Not at all – I told them if they made the product availible that I > would try and spread the word, so that would be great! > I’m not sure when the Bandages Plus web site will add it (or where on > the site it will be – they have a LOT of products, so it’s a little > tough to navigate) But I’ll try and keep an eye on it, and post > something here if I have more info.

Actually – you can email them now at bplu…@aol.com or call 1-800-770-1032 to order.  It’s Alba Health X Span tubular dressing retainer – size 1   (1 box is 30 yards) dave — I support Gov. Howard Dean M.D. for President: www.deanforamerica.com

Response:

This subject has come up before- how do I protect my knuckles? My skin is stretched quite thin over them, and my brain still thinks my fingers are straight – so when I reach for something, I bang my knuckles instead of touching it with my fingertips. I’ve found a pretty decent solution. I went to a physical therapist and she gave me some "tubular dressing retainer" – basically a long roll of nylon/spandex tubing that you can cut to whatever size you need. Sort of a "sock" for your finger. It’s not real thick, so it’s not perfect protection, but helps against most accidental bangs.. I think maybe because I’m wearing something, it reminds me to be careful! It looks like cotton, and if they get dirty, I just throw them away and cut some more off the roll. If you cut them a little long, you can put them on, and roll them down – doubling the thickness. Anyway, the therapist gave me an empty box, so I could order more. I searched the internet and came up empty. I called the company that makes it, and they couldn’t come up with an on-line company, but gave me a phone number. They didn’t sell it either. So I emailed the company back, and together we’ve talked an online store into carrying this product. The product is AlbaHealth X Span Tubular Dressing Retainer size 1 (for fingers and toes) The website is: http://www.bandagesplus.com They should have them in stock in a week or two. (I don’t work for either company; they agreed to help, so I thought I’d spread the word) dave — I support Gov. Howard Dean M.D. for President: www.deanforamerica.com

Response:

Doris wrote: > Hi Dave, > Some great information-keep it coming. I have seen something similar > in what I called the "junk books" we all received in the mail. > I also have a friend who was seeing a physical therapists and using > something similiar like that to put on toothbrushes,  hair brushes > and even on some of your kitchenware to keep from sliding. It’s the > little things that we learn through the years that helps others. > Support groups are great for this-someone always has a idea that > might help you leatn to cope in one fashioned or another.

I also got some gel lined "sleeves" for my fingers, which offer more protection. But they are too tight, and they don’t "breathe". If I was going to change my spark plugs, perhaps I might wear them – but I like the thin spandex things for normal use. I can wear them for hours confortably. Thank goodness my brother is a mechanic so I don’t have to change spark plugs! dave — I support Gov. Howard Dean M.D. for President: www.deanforamerica.com

Response:

Dave, this is WONDERFUL!  Do you mind if I share this info on some scleroderma message boards and at chat? – Hide quoted text — Show quoted text -Dave Wilcher wrote: > This subject has come up before- how do I protect my knuckles? > My skin is stretched quite thin over them, and my brain still > thinks my fingers are straight – so when I reach for something, > I bang my knuckles instead of touching it with my fingertips. > I’ve found a pretty decent solution. I went to a physical therapist > and she gave me some "tubular dressing retainer" – basically > a long roll of nylon/spandex tubing that you can cut to whatever > size you need. Sort of a "sock" for your finger. It’s not real thick, > so it’s not perfect protection, but helps against most accidental > bangs.. I think maybe because I’m wearing something, it reminds > me to be careful! It looks like cotton, and if they get dirty, I just throw > them away and cut some more off the roll. If you cut them a little long, > you can put them on, and roll them down – doubling the thickness. > Anyway, the therapist gave me an empty box, so I could order > more. I searched the internet and came up empty. I called the > company that makes it, and they couldn’t come up with an > on-line company, but gave me a phone number. They didn’t > sell it either. So I emailed the company back, and together > we’ve talked an online store into carrying this product. > The product is AlbaHealth X Span Tubular Dressing Retainer > size 1 (for fingers and toes) > The website is: http://www.bandagesplus.com > They should have them in stock in a week or two. > (I don’t work for either company; they agreed to help, so I > thought I’d spread the word) > dave

Response:

Question:

To avoid a scandalous trial or prosecution for Plagiarism which is a Federal Crime, the Management of TBN preferred to settle the matter out of Court.

Hi David, That’s an interesting article. However, I don’t believe the detail about Plagiarism being a Federal Crime. Cheers, Eugene Shubert http://www.everythingimportant.org

Response:

Shortly after the debut of the Movie The Omega Code, a plagiarism Lawsuit was filed by Sylvia Fleener against Paul, Jan Crouch, their son Matthew and several associates of TBN. The Lawsuit was scheduled for trial on January 2nd 2002.in the U.S. District Court of Los Angeles. On January 1st 2002 the Newspaper Orange County Register reported that the Crouches paid an undisclosed sum to settle the lawsuit out of Court. The plaintiff Sylvia Fleener agreed with the terms of the settlement and the lawsuit was dropped. http://www.rickross.com/reference/tbn/tbn6.html More than a year has passed and the religious media never mentioned a word concerning the costly cinematographic Misadventure of Mr, Mrs Crouch and collaborators. A thick veil of Silence has been covering this Settlement, no one knows how many Million of dollars the Moguls of TBN. paid to avoid a scandalous trial and a potential defeat in Court. The word transparency could not be found in Paul and Jan Crouch’s repertoire, they did not inform their audience about this lawsuit. The Gospel Entrepeneurs did not even consider themself accountable to their generous Contributors. Until presently not even their biggest supporters, who have regularly donated huge amount of money to TBN, were informed that their financial contributions have been used in the settlement of a 40 Million dollars Lawsuit. Without providing explanations, not even expressing regrets or apologies, and as if nothing happened, the Gospel Millionaires conducted business as usual on TBN. Paul and Jan kept the mind of their followers very busy with astonishing spiritual revelations, with great power of persuasion they preached unbelievable tales of new miraculous healing and most importantly they did not fail to ask for more Donations. Keeping a perfect composure at all time, and letting absolutely nothing transpire, the Crouches have shown great talents of accomplished performers, having absolutely nothing to envy from the best actors of Hollywood. Not a single believer in their audience e ver suspected that the Gospel Entertainers had troubles with the law. Even while reading this post, many cannot still believe that Paul and Jan Crouch were facing charges in a U.S. District Court, accused of violating copyright laws. To avoid a scandalous trial or prosecution for Plagiarism which is a Federal Crime, the Management of TBN preferred to settle the matter out of Court. Since the beginning Fleener believed that her Novel had all the ingredients to create a great movie, specially for this reason she forwarded the Manuscript to the Crouches Many witnesses including employees of TBN could have testified that Sylvia Fleener had entrusted Paul and Jan with the manuscript of her novel originally titled The Omega Syndrome. After reception of the Manuscript nobody from TBN contacted again the Author. Three years later when Syvia Fleener went to watch the movie The Omega Code produced by Paul Crouch and his son Matthew, she could not believe her eyes! In court records Fleener said: "I was literally devastated by the similarities". Before filing her Plagiarism lawsuit, Sylvia was a fan of the Crouches and for many years she regularly contributed money to support TBN. In complete disbelief she could hardly accept the fact that the religious Leaders of TBN had actually duped her. This was a great shock for Fleener who suffers of internal scleroderma. an auto-immune disease that caused her skin to harden. Afflicted, betrayed and disconcerted Sylvia Fleener said: "I struggled to understand how this could have been done by those people, who had convinced me of their ‘Christian’ principles on their broadcasts." In spite of her illness she courageously took her case to court, Rebecca Holden a good friend of Fleener explained, by doing so the plaintiff wanted to expose the Crouches so people aren’t duped by them. Rebecca also added: "They’re the ones who give Christians a bad name." This is so hypocritical of our Christian Leaders who never fail to point their fingers at the Sins of Hollywood while they are keeping their eyes and mouth totally shut in front of blatant wickedness in the Church. The Hollywood producers are no Saints, however they do not make movies by transforming copyrighted manuscripts without the acknowledgment of their authors. Our religious leaders are completely blind and dumb when hard working Christians are being solicited day and night for donations by Gospel millionaires and their hard earned money is spent to settle out of court a 40 Million dollars Plagiarism Lawsuit. With great nostalgia Christians are wishing to see again the days of Righteousness and Holiness of the Early Church, unfortunately we are left to witness evil days where defrauding and deceiving believers is a vocation. For ages Christianity has been praying for the sick, unfortunately with this new breed of "Evangelists", preying on the sick and the elderly became a Ministry… Mt:5:13: Ye are the salt of the earth: but if the salt have lost his savour, wherewith shall it be salted? it is thenceforth good for nothing, but to be cast out, and to be trodden under foot of men. To access the report of the settlement directly from the Orange County Register web site please click below: http://www.ocregister.com/archive/

Response:

Question:

I paralleled an open-label study Dr Mayes did a few years ago and took minocycline for a year.  It cleared up pimples I get occaisionally, and maybe fixed some stomach/intestinal problems.  It’s been found to be a mild anti-inflammatory in rheumatoid arthritis, but so far it hasn’t shown any great success in scleroderma studies. I’d be interested to see a study on this "low-level infection."  Maybe, since researchers believe there are multiple triggers for scleroderma, there are _some_ people with this. I’ll tell you, though.  I’ve had the disease 9 years and I’m just beginning to see the huge swings it can make.  I think it’s convenient when someone says "Oh, that particular substance didn’t work on you because you have to take it for a long time."  Well, you know, I’ve found my particular case is kind of like the weather – if I wait long enough, it’ll change on it’s own. – Hide quoted text — Show quoted text -Liz Bear wrote: > Has anyone tried the antibotic protocol? > It seems to look at scleroderma as being a reaction to a very low > level infection. > I would like to know if anyone has tried it and what effects have you > recieved from it. > Red Bunyip > Liz – Australia

Response:

- Hide quoted text — Show quoted text -dreich…@toad.net (Doris) wrote: >Having Scleroderma now for 11 years, I truly believe it >has a mind of its own-and it runs in cycles. >I had been doing great,able to do many things the >last 6 months then I ever could. I really believe >being on antibiotics for pneumonia this past Dec. did something. >As everything improve! >Well, here I am today-not doing well at all. I >think last Wednesday I should had stayed in bed. I >had an appt with Dr. Wigley-was going out the door >and a ton of bricks I guess hit me. For >this next 2 days I spent between the bedroom and >the bathroom and my head in a bucket! Then on >Saturday I got this headache big time! I finally ended >up at the PC doctor-conclusion a nasty stomach virus and >a lung infection, besides needing plenty of fluids. (appt. with >Wigley never made it). Back on antibiotic-interesting to see if >I show an improvement. >Doris

Oh, Doris, I’m so sorry about your virus and infection. Antibiotics aren’t generally given for viruses but hopefully it clears up your lung infection rapidly and you have an over all improvement in your condition. I’ve never done any studies. Just changed doctors (previous doc dropped HMO) and this one seems all right. Interesting that he calls the patients in instead of one of the staff. Which means he sees a person immediately. I have a fasting lab which is to be done at the one across the street from him so if the misspelling of my last name (a commom occurrence and a common misspelling) slows things down, I can go across the street and get a new order with my name spelled correctly. Plus I need to ask for a prescription that has no refills left (thyroid). Take care, Nell Write a wise saying and your name will live forever.  Anonymous

Response:

Having Scleroderma now for 11 years, I truly believe it has a mind of its own-and it runs in cycles. I had been doing great,able to do many things the last 6 months then I ever could. I really believe being on antibiotics for pneumonia this past Dec. did something. As everything improve! Well, here I am today-not doing well at all. I think last Wednesday I should had stayed in bed. I had an appt with Dr. Wigley-was going out the door and a ton of bricks I guess hit me. For this next 2 days I spent between the bedroom and the bathroom and my head in a bucket! Then on Saturday I got this headache big time! I finally ended up at the PC doctor-conclusion a nasty stomach virus and a lung infection, besides needing plenty of fluids. (appt. with Wigley never made it). Back on antibiotic-interesting to see if I show an improvement. Doris "Amelia Yaussy" <ayau…@forcemail.com> wrote in message

news:RYmcnWM5HbeZFuSiU-KYvA@wideopenwest.com… – Hide quoted text — Show quoted text -> I paralleled an open-label study Dr Mayes did a few years ago and took > minocycline for a year.  It cleared up pimples I get occaisionally, and > maybe fixed some stomach/intestinal problems.  It’s been found to be a > mild anti-inflammatory in rheumatoid arthritis, but so far it hasn’t > shown any great success in scleroderma studies. > I’d be interested to see a study on this "low-level infection."  Maybe, > since researchers believe there are multiple triggers for scleroderma, > there are _some_ people with this. > I’ll tell you, though.  I’ve had the disease 9 years and I’m just > beginning to see the huge swings it can make.  I think it’s convenient > when someone says "Oh, that particular substance didn’t work on you > because you have to take it for a long time."  Well, you know, I’ve > found my particular case is kind of like the weather – if I wait long > enough, it’ll change on it’s own. > Liz Bear wrote: > > Has anyone tried the antibotic protocol? > > It seems to look at scleroderma as being a reaction to a very low > > level infection. > > I would like to know if anyone has tried it and what effects have you > > recieved from it. > > Red Bunyip > > Liz – Australia

Response:

Question:

Welcome to the Newsgroup. I also have Scleroderma with a various of different problems. I have never been on antibiotic therapy, but last December I had pneumonia and previous to that my lung function tests and other things were all out whack. Needless to say I was admitted to the hospital for the pneumonia and was given antibiotic for it. To make a long story short. In March was my appt. with my doctor who takes care of my Scleroderma-he was amazed everything had changed dramatically for the better-he asked what I had been doing and the only thing that I was doing differently was taking antibiotics to get rid of the pneumonia, and I really believed that is what did it, even though it wasn’t the one you are referring to. My next appointment with him is just around the corner. The first time since dx that I have had a 6 month appt. Doris "Montag" <armad…@polbox.com> wrote in message

news:d9e99f21.0308272303.20a2b872@posting.google.com… – Hide quoted text — Show quoted text -> Was recently told I probably have CREST. > Anyone have any experiences good or bad with antibiotic therapy? > Thank you! > John

Response:

Thanks for the all the info.  This is a scary experience and there is a lot to take in at once. Amelia Yaussy <ayau…@forcemail.com> wrote in message <news:opadnUK83YMnkdOiU-KYgw@wideopenwest.com>… > Hi John!  I have diffuse and paralelled a study Dr Mayes was doing on > minocycline (wasn’t in the study but took the same dosages.)  

 How did your doc diagnose Limited (CREST)? I have had Raynauds for several years but more recently have developed joint pain/stiffness, subjective fever, fatigue, petechiae under tongue and esophageal and abdominal symptoms.  My internal medicine doctor indicated that I met the criteria for CREST.  I am waiting to see a rheumatologist.  In the interim I am trying to learn all I can to see what kind of difference I can make with diet/lifestyle and what choice of therapies I may have. Thanks again! John – Hide quoted text — Show quoted text -> Montag wrote: > > Was recently told I probably have CREST. > > Anyone have any experiences good or bad with antibiotic therapy? > > Thank you! > > John

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Hi John!  I have diffuse and paralelled a study Dr Mayes was doing on minocycline (wasn’t in the study but took the same dosages.)  It cleared up acne and may have cleared up some gut problems but after a year I had to say it didn’t do anything for my scleroderma.  Not much study has been done on minocycline for scleroderma, but it did prove to be a mild anti-inflammatory in a rather large test for rheumatoid arthritis. How did your doc diagnose Limited (CREST)? If you’re in the US, call the Scleroderma Foundation at 1-800-722-HOPE or visit www.scleroderma.org to get a free info packet mailed to you. Of course, they’ll send their membership info, but they’ll also send some of their great brochures and booklets, and a copy of the Scleroderma Voice, the quarterly magazine they produce, and it has a LOT of info. – Hide quoted text — Show quoted text -Montag wrote: > Was recently told I probably have CREST. > Anyone have any experiences good or bad with antibiotic therapy? > Thank you! > John

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Was recently told I probably have CREST. Anyone have any experiences good or bad with antibiotic therapy? Thank you! John

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I think it’s a particularly interesting phenomena in scleroderma that, even when presented study evidence that certain medications aren’t significantly more effective than placebo (methotrexate – http://makeashorterlink.com/?N31912623) or large dose vs small dose (D-penicillamine – http://makeashorterlink.com/?I287633C5) that these drugs remain standard treatment.  I don’t doubt that people will continue to find antibiotic therapy helpful even if it is shown to make an insignificant difference in studies.  So far, there’s not much evidence pro or con – http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?CMD=search&DB=PubMed

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Question:

Hi anyone here go to the conference this year-and what was it like and anything new. Doris

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Hi Doris!  We missed you there.  A bunch of people went on the bus tour of downtown that you did and when they were talking about it, it reminded me of your comments on it! I don’t think there was anything earth-shattering said, but there was some interesting stuff. Dr Postelthwaite from the University of Tennessee had a really interesting presentation on the bovine collagen study (http://www.sctc-online.org/studies/bovine.htm) and what the theory is driving it.  The study has been extended so I think they may still be taking patients – check with one of the centers listed on the link.  The NIH funded about $15 million dollars in scleroderma-related research this year.  Unfortunately, the current administration in Washington only wants to increase this amount by 2%.  We visited our congresspeople and asked for more like 10%, please! It was hot as you-know-where on Capitol Hill but we all got through it. – Hide quoted text — Show quoted text -Doris wrote: > Hi anyone here go to the conference this year-and what was it like and > anything new. > Doris

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Thanks for your response. It can get HOT in Washington and the marble steps certainly do not help the matter much. Doris "Amelia Yaussy" <ayau…@forcemail.com> wrote in message

news:3EFF4DA8.509@forcemail.com… – Hide quoted text — Show quoted text -> Hi Doris!  We missed you there.  A bunch of people went on the bus tour > of downtown that you did and when they were talking about it, it > reminded me of your comments on it! > I don’t think there was anything earth-shattering said, but there was > some interesting stuff. Dr Postelthwaite from the University of > Tennessee had a really interesting presentation on the bovine collagen > study (http://www.sctc-online.org/studies/bovine.htm) and what the > theory is driving it.  The study has been extended so I think they may > still be taking patients – check with one of the centers listed on the > link.  The NIH funded about $15 million dollars in scleroderma-related > research this year.  Unfortunately, the current administration in > Washington only wants to increase this amount by 2%.  We visited our > congresspeople and asked for more like 10%, please! > It was hot as you-know-where on Capitol Hill but we all got through it. > Doris wrote: > > Hi anyone here go to the conference this year-and what was it like and > > anything new. > > Doris

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