Guest guest Posted May 15, 1999 Report Share Posted May 15, 1999 Dear Marie, You need to start antibiotic therapy - minocycline or doxycycline, 100-200mg on Monday Wednesday and Fridays. For scleroderma, clindamycin or lincocin is added. If you want to tell us where you live, we have a list of doctors and might have one in your area who you could go to or ask your own doctor to consult with. I'm glad you're feeling better, Chris. On Fri, 14 May 1999 Mlf82938@... wrote: > From: Mlf82938@... > > HI DEANNA, i FEEL MUCH BETTER TODAY, THESE dr< ARE SMART, THEY KNEW JUST WHAT > TO GAVE ME i WAS SIC FOR A WEEK. BUT DOING BETTER, GOING SWIMING THEN INTO > COLD AIR WAS A NO NO. WELL A LOT OF PEOPLE OUT THERE MADE ME FEEL BETTER. > NEVER KNEW SO MANY CARE, GEE IF YOU ALL NEED SOMETALK TO OR CHAT, JUST WRITE > OK THANKS NOE, DEANNA, THAT NAME IS BEAUTIFUL. im 60 YEARS OLD, i HAVE > THREE DEASES HAVE RAUNARDS, SCL. RUM. i HAD IT FOR 5 YEARS, WHY SO LATE > ??//// WHAT ARE YOU TAKING FOR MED. IAM ON PROCARDIA CURPRIME,pRILOSEC, > ZOLF FOR NERVES ARE THEY GOOD. i AM HAPPY GO LUCKY EXCEPT MY BENT FINGERS > THATS MY WORST PROBLEM, HALF BENT. ANYONE KNOW WHAT TO DO FOR BENT FINGERS. > i AM VERY ILL iAM TURNING TO STONE. THEN MY ORGANS WILL SHUT DOWN, WHEN HOW > WHERE GOD ONLY KNOWS. HE IS WITH ME i PRAY ALL THE TIME, BUT THIS LADY HAD IT > SO SO BAD, HUSBAND, HAD TO GRAIN HER FOOD AND FEED HER, SHE CAME OUT OF IT. > she gOT OFF DIARY PROCUTS MILK ECT, GOT INTO HERBS. SHE IS NOW WORKING IT > TOOK HER YEARS, SHE NOW 40 WELL ITS COLD HERE, GOT TO TURN HEAT, WHAT DO > YOU TAKE. MARIE THANKS TO ALL > > ------------------------------------------------------------------------ > ONElist: where real people with real interests get connected. > > Join a new list today! > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 3, 1999 Report Share Posted June 3, 1999 , GET OFF THE ALERT, are you crazy girl. That contains the herb muhung, however you spell that, which is where ephedrine comes from. This is a dangerous state of constant adrenaline and persons even as young as 23 or less have died from this. It is not regulated because it is classified as a herb. But they are certainly trying to. It is not good for your circulation either. Also the prilosec is used up to three times a day to prevent the heartburn if just one doesn't work. Ask your doctor to increase your prilosec to two day. This will probably take care of the heartburn. I am 35 and when i was early thirties i went to new york and had four joints removed in fingers and bones fused to prevent the ulcers and make functioning easier. I did heal quite well. but I agree it isn't for everyone but Dr. Melone is famous for doing scleraderma patients that is why i went to him. Make sure you get off the Alert not only is it expensive it is dangerous especially for you. Diane Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 25, 2000 Report Share Posted January 25, 2000 I also have scleroderma and I use Bag Balm every night on my hands. It comes in a small green can and last for a very long time. It has prevented ulcers and infections. It is a must for all scleroderma patients with hand involvement. It has an antiseptic in it and keeps the skin as soft as it possible can be with scleroderma. It is also recommended on the scleroderma website. It has the consistency of vaseline so I only use at night. Good luck. Diane Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 25, 2000 Report Share Posted January 25, 2000 Diane, Where doyou get " Bag Balm " . I have never seen it. What I use on my hands is a paraffin wax bath. The Wax is warm and soothing and has some type of emollient in it. >From: NILOB1@... >denisenolan@..., rheumaticonelist >Subject: Re: rheumatic Scleroderma >Date: Wed, 26 Jan 2000 07:25:53 EST > >I also have scleroderma and I use Bag Balm every night on my hands. It >comes >in a small green can and last for a very long time. It has prevented >ulcers >and infections. It is a must for all scleroderma patients with hand >involvement. It has an antiseptic in it and keeps the skin as soft as it >possible can be with scleroderma. It is also recommended on the >scleroderma >website. It has the consistency of vaseline so I only use at night. Good >luck. Diane ______________________________________________________ Get Your Private, Free Email at http://www.hotmail.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 26, 2000 Report Share Posted January 26, 2000 I don't feel that the udder cream works that well. No more than most of the other creams so make sure you get the bag balm in the green tin. It shouldn't be more than 7 dollars for the can and will last close to 6 months to a year. I buy mine at Meijers, which is like a grocery store and department store together but you can get it at most pharmacies, although sometimes you have to ask the pharmacist for it, not sure why either. Diane. Don't settle for the cream. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 26, 2000 Report Share Posted January 26, 2000 > From: " heather mason " <aquaf@...> > > Diane, > Where doyou get " Bag Balm " . I have never seen it. What I use on my hands is > a paraffin wax bath. The Wax is warm and soothing and has some type of > emollient in it. > > I am interested in trying this cream also, as I have some kind of dermatitis for 30 years. I looked at the websites for scleroderma and they say Bag Balm and Udder Cream are sold at most pharmacies. CVS is supposed to carry Bag Balm in a green container. I plan to go over and check as soon as the South Carolina snow storm effects clear out here! a Carnes Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 26, 2000 Report Share Posted January 26, 2000 , If you live in the country or near a large animal feed store like a co-op you can get Bag Balm really cheap. I have a 10 ounce tin that was $7.99 I bought at the co-op. It is an anticeptic ointment used for cows udders but farm women have been using it for years for chapped hands. It works great. Shania Twain the country singer has recently revealed that she uses it for a skin cream. I have seen it in a tiny tin at a quilt shop for close to $8.00. Quilters use it as a salve for their chapped and sore fingers they get from hours of quilting. Bev > From: " heather mason " <aquaf@...> > > Diane, > Where doyou get " Bag Balm " . I have never seen it. What I use on my hands is > a paraffin wax bath. The Wax is warm and soothing and has some type of > emollient in it. > > > > > >From: NILOB1@... > >denisenolan@..., rheumaticonelist > >Subject: Re: rheumatic Scleroderma > >Date: Wed, 26 Jan 2000 07:25:53 EST > > > >I also have scleroderma and I use Bag Balm every night on my hands. It > >comes > >in a small green can and last for a very long time. It has prevented > >ulcers > >and infections. It is a must for all scleroderma patients with hand > >involvement. It has an antiseptic in it and keeps the skin as soft as it > >possible can be with scleroderma. It is also recommended on the > >scleroderma > >website. It has the consistency of vaseline so I only use at night. Good > >luck. Diane > > ______________________________________________________ > Get Your Private, Free Email at http://www.hotmail.com > > > --------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 26, 2000 Report Share Posted January 26, 2000 Hi a - Bag bal is actually a thick ointment not a cream. A dermatologist once told me always use an ointment as opposed to a cream as it keeps the skin more moist than a cream does. Judy Re: rheumatic Scleroderma > From: a Carnes <paulajeanne@...> > > > > From: " heather mason " <aquaf@...> > > > > Diane, > > Where doyou get " Bag Balm " . I have never seen it. What I use on my hands > is > > a paraffin wax bath. The Wax is warm and soothing and has some type of > > emollient in it.. > > > > > > I am interested in trying this cream also, as I have some kind of dermatitis > for 30 years. I looked at the websites for scleroderma and they say Bag > Balm and Udder Cream are sold at most pharmacies. CVS is supposed to carry > Bag Balm in a green container. I plan to go over and check as soon as the > South Carolina snow storm effects clear out here! > a Carnes > > > --------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 28, 2000 Report Share Posted January 28, 2000 Well, a warm hello on this cold day. It is great to see a SD newbie. I have been part of this wonderful group since 1997, and have been on a steady improvement since. Their upbeat attitude and willingness to believe there is a cure is enough reason to join us for moral support. My story is on the www.rheumatic.org site, since it is long, I won't bore you with it in this note. But I have set up a web site of my own with lots of information. http://hometown.aol.com//lindartc/index.htm Scleroderma is a very serious illness, and since you have had this with serious internal organ damage it would be great if you could see one of the doctors who have experience using clindamycin for the disease. In a message dated 01/26/2000 3:16:41 AM Eastern Standard Time, denisenolan@... writes: > Recently I have noticed scleroderma mentioned quite often, and since that is > my major diagnosis I am anxious to read more from all of you. I had not > heard of AP until I joined this site, and am now looking into it as a > solution for myself. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 29, 2000 Report Share Posted April 29, 2000 Dear , I wrote a couple of days ago to Ethel and asked her some questions which might or might not be something I WANT to hear but need to hear about the " other " scleraderma patients she has known in the past. I am mentally " fighting " being good right now. Had a piece of pizza one day this week and it was sooooo good. I had one-half sandwich - my first since December - yesterday. It had one piece of cheese and,of course, the french bread. My hands have ached today. In my mind??? I went to my monthly luncheon at the club with my friends today and the birthday cake was cheesecake. Had four bites with the nberry sauce (has sugar) on it. Hands still aching. But with four bites????? In my mind??? I want her to tell me about the " others " . Did the ones who died do these diets on the net, none at all, were they macrobiotic? I think your letter was very timely as I seem to be " emotionally " grasping at the moment. I just finished a week of oral clindy and am going into the second full one again as while the first helps immensely, the symptoms were not completely gone. Dr. Sinnott said for me to get on over there as soon as conditions allow me to make the trip as the oral (in his viewpoint) does not work as well as the IV clindy. Another question, when Bob picked up my prescription, it was generic clindamycine. Is this important? They did not have the true item in stock and I was pretty deperate so I accepted it. But for future reference, I do need to know! Glad you are doing tennis and I hope your art show went wonderfully. RTC@... wrote: > Where are all the Scleroderma people who are taking antibiotics? Have > we all been cured? There used to be regular notes from you all. I > haven't been reading this board as regularly, but recently found that > reading it on www.onelist.com, not getting mail works much better for > me. > > I wanted to start a thread, cause the newbies will think it doesn't > work for Scleroderma if there are no notes. > > My brief update is that I have am still feeling far better than I was > before I started the antibiotics. I have spread out my clindamycin to > every 12 weeks since I am doing so well. (I just finished my > clindamycin week,and realize how much better I am. Once again I > herxed at the beginning of the week). I also added photopheresis to > my treatments.It is my 3 years anniversary on antibiotics with very > little progression. > > On a more personal note, Last night I was in two watercolor shows, > and I am still playing tennis, even with lung complications. > (I thought I would never play again before I started the > antibiotics).And people tell me I look better than I have in years! > > I hope you are all well. > Take care of yourself. > > http://hometown.aol.com//lindartc/index.htm > > ------------------------------------------------------------------------ > Accurate impartial advice on everything from laptops to table saws. > 1/3020/0/_/532797/_/957044728/ > ------------------------------------------------------------------------ > > To unsubscribe, email: rheumatic-unsubscribeegroups Attachment: vcard [not shown] Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 30, 2000 Report Share Posted April 30, 2000 Hi , There are quite a number of medical histories from past/present group members with scleroderma at rheumatic.org/medhist.htm - you might like to read through them. Chris. >Where are all the Scleroderma people who are taking antibiotics? Have >we all been cured? There used to be regular notes from you all. I >haven't been reading this board as regularly, but recently found that >reading it on www.onelist.com, not getting mail works much better for >me. > > I wanted to start a thread, cause the newbies will think it doesn't >work for Scleroderma if there are no notes. > >My brief update is that I have am still feeling far better than I was >before I started the antibiotics. I have spread out my clindamycin to >every 12 weeks since I am doing so well. (I just finished my >clindamycin week,and realize how much better I am. Once again I >herxed at the beginning of the week). I also added photopheresis to >my treatments.It is my 3 years anniversary on antibiotics with very >little progression. > >On a more personal note, Last night I was in two watercolor shows, >and I am still playing tennis, even with lung complications. >(I thought I would never play again before I started the >antibiotics).And people tell me I look better than I have in years! > >I hope you are all well. >Take care of yourself. > >http://hometown.aol.com//lindartc/index.htm > > > > > >------------------------------------------------------------------------ >Accurate impartial advice on everything from laptops to table saws. >1/3020/0/_/532797/_/957044728/ >------------------------------------------------------------------------ > >To unsubscribe, email: rheumatic-unsubscribeegroups > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 1, 2000 Report Share Posted May 1, 2000 Hi , This morning I posted about the scleroderma histories at rheumatic.org/medhist.htm - you might find it encouraging to read them and nearly everyone has added their email address so you can talk to them direct. Some of the scleroderma patients who have recovered the most completely, like Craig , seem to have done some diet modification. There was a book called " Holiday from death " by Joanne Schur where she describes how she started vegetable juicing. Craig took the antibiotics and also took Joanne's advice about the juicing. I don't know about the dietary habits of many of the scleroderma patients, but then good diet is just common sense if you are ill. If someone takes the antibiotics but smokes, drinks heavily, doesn't get enough sleep, is uptight and hurrying around all the time and lives on Mcs and chips then they are simply not going to get well. The immune system needs to be boosted as much as possible - sugary foods and junk food deplete the immune system (see rheumatic.org/sugar.htm). There is a point of no return with scleroderma. If a patient has serious lung damage then the antibiotics often don't have time to reverse the disease. Having said that, it's always worth starting antibiotic therapy as we have had scleroderma patients with lung damage recover - one patient had demonstrable improvement on x-ray results which was previously thought to be impossible. The advantage with the IVs is that the clindamycin goes straight into the bloodstream. Oral clindamycin is definitely better than no clindamycin but the amount absorbed is dependent on how much food is in the stomach. You could perhaps get to Dr. Sinnott and do the IVs in series if that schedule would suit you. You might be encouraged by talking to some of the scleroderma patients who have given us their medical histories for our web page. Chris. > >Dear , I wrote a couple of days ago to Ethel and asked her some >questions which might or might not be something I WANT to hear but need to >hear about the " other " scleraderma patients she has known in the past. I am >mentally " fighting " being good right now. Had a piece of pizza one day this >week and it was sooooo good. I had one-half sandwich - my first since >December - yesterday. It had one piece of cheese and,of course, the french >bread. My hands have ached today. In my mind??? I went to my monthly >luncheon at the club with my friends today and the birthday cake was >cheesecake. Had four bites with the nberry sauce (has sugar) on it. >Hands still aching. But with four bites????? In my mind??? I want her to >tell me about the " others " . Did the ones who died do these diets on the >net, none at all, were they macrobiotic? I think your letter was very >timely as I seem to be " emotionally " grasping at the moment. I just >finished a week of oral clindy and am going into the second full one again >as while the first helps immensely, the symptoms were not completely gone. >Dr. Sinnott said for me to get on over there as soon as conditions allow me >to make the trip as the oral (in his viewpoint) does not work as well as the >IV clindy. Another question, when Bob picked up my prescription, it was >generic clindamycine. Is this important? They did not have the true item >in stock and I was pretty deperate so I accepted it. But for future >reference, I do need to know! Glad you are doing tennis and I hope your art >show went wonderfully. > >RTC@... wrote: > >> Where are all the Scleroderma people who are taking antibiotics? Have >> we all been cured? There used to be regular notes from you all. I >> haven't been reading this board as regularly, but recently found that >> reading it on www.onelist.com, not getting mail works much better for >> me. >> >> I wanted to start a thread, cause the newbies will think it doesn't >> work for Scleroderma if there are no notes. >> >> My brief update is that I have am still feeling far better than I was >> before I started the antibiotics. I have spread out my clindamycin to >> every 12 weeks since I am doing so well. (I just finished my >> clindamycin week,and realize how much better I am. Once again I >> herxed at the beginning of the week). I also added photopheresis to >> my treatments.It is my 3 years anniversary on antibiotics with very >> little progression. >> >> On a more personal note, Last night I was in two watercolor shows, >> and I am still playing tennis, even with lung complications. >> (I thought I would never play again before I started the >> antibiotics).And people tell me I look better than I have in years! >> >> I hope you are all well. >> Take care of yourself. >> >> http://hometown.aol.com//lindartc/index.htm >> >> ------------------------------------------------------------------------ >> Accurate impartial advice on everything from laptops to table saws. >> 1/3020/0/_/532797/_/957044728/ >> ------------------------------------------------------------------------ >> >> To unsubscribe, email: rheumatic-unsubscribeegroups > >------------------------------------------------------------------------ >Accurate impartial advice on everything from laptops to table saws. >1/3020/0/_/532797/_/957056748/ >------------------------------------------------------------------------ > >To unsubscribe, email: rheumatic-unsubscribeegroups > > >--------------62F011985255455700A07F0E >Content-Type: text/x-vcard; charset=us-ascii; name= " vcard.vcf " >Content-Transfer-Encoding: 7bit >Content-Description: Card for Fain >Content-Disposition: attachment; filename= " vcard.vcf " > >begin: vcard >fn: Fain >n: Fain; >email;internet: slfain@... >note: scleraderma, AP December 6, 1999: Minocin 200 mg/MWF, five day IV clindamycine every six months and one 900 cc iv monthly, Synthroid 100 mcg, Prinvil 5 mg, Premarin 1.25 mg., Multiple Vitamin, COQ-10 50 mg, Vitamin K 100 mcg, Primadophilus Bificus, IMMUNE TREE COLOSTRUM6, R Garden MSM, R Garden Cordyceps, Traditional Mullein/Pan Pienn Lien, one super calcium 2/week, R Garden Maximizer (enzymes), Natures Sunshine Lobelia, Vitamin O, Fenu-Thyme, Milk Thistle, Evening Primrose Oil >Softgels, Colloidal Silver, Flax Oil, Young Essential Oils: lavender, frankencense, citroin, peppermint, basil >x-mozilla-cpt: ;0 >x-mozilla-html: FALSE >version: 2.1 >end: vcard > > >--------------62F011985255455700A07F0E-- > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 1, 2000 Report Share Posted May 1, 2000 brings up some very good points here. All the lifestyle changes work together to aid in getting well. Another important aspect is maintaining a good positive outlook and truly believing in your treatment plan. Once I reached a decision that " yes, I believe AP will work for me " then I proceeded down that road and didn't look back. There just was no room for any doubts just keep on. I kept an open mind but my whole being was immersed in doing the AP. I think with a purpose and determination like this your body has to respond!!! Love, Judy Re: rheumatic Scleroderma > Hi , > > This morning I posted about the scleroderma histories at rheumatic.org/medhist.htm > - you might find it encouraging to read them and nearly everyone has added their > email address so you can talk to them direct.. > > Some of the scleroderma patients who have recovered the most completely, like > Craig , seem to have done some diet modification. There was a book called > " Holiday from death " by Joanne Schur where she describes how she started vegetable > juicing. Craig took the antibiotics and also took Joanne's advice about the > juicing. I don't know about the dietary habits of many of the scleroderma patients, > but then good diet is just common sense if you are ill. If someone takes the > antibiotics but smokes, drinks heavily, doesn't get enough sleep, is uptight > and hurrying around all the time and lives on Mcs and chips then they > are simply not going to get well. The immune system needs to be boosted as much > as possible - sugary foods and junk food deplete the immune system (see rheumatic.org/sugar.htm).. > > > There is a point of no return with scleroderma. If a patient has serious lung > damage then the antibiotics often don't have time to reverse the disease. Having > said that, it's always worth starting antibiotic therapy as we have had scleroderma > patients with lung damage recover - one patient had demonstrable improvement > on x-ray results which was previously thought to be impossible.. > > The advantage with the IVs is that the clindamycin goes straight into the bloodstream.. > Oral clindamycin is definitely better than no clindamycin but the amount absorbed > is dependent on how much food is in the stomach. You could perhaps get to Dr.. > Sinnott and do the IVs in series if that schedule would suit you.. > > You might be encouraged by talking to some of the scleroderma patients who have > given us their medical histories for our web page.. > > Chris.. > > > >Dear , I wrote a couple of days ago to Ethel and asked her some > >questions which might or might not be something I WANT to hear but need to > > >hear about the " other " scleraderma patients she has known in the past. I am > > >mentally " fighting " being good right now. Had a piece of pizza one day this > > >week and it was sooooo good. I had one-half sandwich - my first since > >December - yesterday. It had one piece of cheese and,of course, the french > > >bread. My hands have ached today. In my mind??? I went to my monthly > >luncheon at the club with my friends today and the birthday cake was > >cheesecake. Had four bites with the nberry sauce (has sugar) on it.. > >Hands still aching. But with four bites????? In my mind??? I want her to > > >tell me about the " others " . Did the ones who died do these diets on the > >net, none at all, were they macrobiotic? I think your letter was very > >timely as I seem to be " emotionally " grasping at the moment. I just > >finished a week of oral clindy and am going into the second full one again > > >as while the first helps immensely, the symptoms were not completely gone.. > > >Dr. Sinnott said for me to get on over there as soon as conditions allow me > > >to make the trip as the oral (in his viewpoint) does not work as well as the > > >IV clindy. Another question, when Bob picked up my prescription, it was > >generic clindamycine. Is this important? They did not have the true item > > >in stock and I was pretty deperate so I accepted it. But for future > >reference, I do need to know! Glad you are doing tennis and I hope your art > > >show went wonderfully. > > > >RTC@... wrote: > > > >> Where are all the Scleroderma people who are taking antibiotics? Have > >> we all been cured? There used to be regular notes from you all. I > >> haven't been reading this board as regularly, but recently found that > >> reading it on www.onelist.com, not getting mail works much better for > >> me.. > >> > >> I wanted to start a thread, cause the newbies will think it doesn't > >> work for Scleroderma if there are no notes.. > >> > >> My brief update is that I have am still feeling far better than I was > >> before I started the antibiotics. I have spread out my clindamycin to > >> every 12 weeks since I am doing so well. (I just finished my > >> clindamycin week,and realize how much better I am. Once again I > >> herxed at the beginning of the week). I also added photopheresis to > >> my treatments.It is my 3 years anniversary on antibiotics with very > >> little progression.. > >> > >> On a more personal note, Last night I was in two watercolor shows, > >> and I am still playing tennis, even with lung complications.. > >> (I thought I would never play again before I started the > >> antibiotics).And people tell me I look better than I have in years! > >> > >> I hope you are all well.. > >> Take care of yourself.. > >> > >> http://hometown.aol.com//lindartc/index.htm > >> > >> ------------------------------------------------------------------------ > > >> Accurate impartial advice on everything from laptops to table saws.. > >> 1/3020/0/_/532797/_/957044728/ > >> ------------------------------------------------------------------------ > > >> > >> To unsubscribe, email: rheumatic-unsubscribeegroups > > > >------------------------------------------------------------------------ > >Accurate impartial advice on everything from laptops to table saws.. > >1/3020/0/_/532797/_/957056748/ > >------------------------------------------------------------------------ > > > >To unsubscribe, email: rheumatic-unsubscribeegroups > > > > > >--------------62F011985255455700A07F0E > >Content-Type: text/x-vcard; charset=us-ascii; name= " vcard.vcf " > >Content-Transfer-Encoding: 7bit > >Content-Description: Card for Fain > >Content-Disposition: attachment; filename= " vcard.vcf " > > > >begin: vcard > >fn: Fain > >n: Fain; > >email;internet: slfain@... > >note: scleraderma, AP December 6, 1999: Minocin 200 mg/MWF, five > day IV clindamycine every six months and one 900 cc iv monthly, Synthroid 100 > mcg, Prinvil 5 mg, Premarin 1.25 mg., Multiple Vitamin, COQ-10 50 mg, Vitamin > K 100 mcg, Primadophilus Bificus, IMMUNE TREE COLOSTRUM6, R Garden MSM, R Garden > Cordyceps, Traditional Mullein/Pan Pienn Lien, one super calcium 2/week, R Garden > Maximizer (enzymes), Natures Sunshine Lobelia, Vitamin O, Fenu-Thyme, Milk Thistle, > Evening Primrose Oil > >Softgels, Colloidal Silver, Flax Oil, Young Essential Oils: lavender, frankencense, > citroin, peppermint, basil > > >x-mozilla-cpt: ;0 > >x-mozilla-html: FALSE > >version: 2.1 > >end: vcard > > > > > >--------------62F011985255455700A07F0E-- > > > > > > ------------------------------------------------------------------------ > Get paid for the stuff you know! > Get answers for the stuff you don't. And get $10 to spend on the site! > 1/2200/0/_/532797/_/957165841/ > ------------------------------------------------------------------------ > > To unsubscribe, email: rheumatic-unsubscribeegroups > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 1, 2000 Report Share Posted May 1, 2000 Hello, Guys, It is not that I don't believe in the AP. I certainly do! I think the discouragement comes from being pulled in two different directions regarding diet. I get a couple of phone calls per week from Maureen who admonishes me to be macrobiotic and also I have these two diets here on the net which are SOOOO much easier to do. I can feed a family easily from these two diets but doing the macrobiotic means cooking two separate meals for my family. And I think Earl's death, although I did not know him, affected us SD's more than we admit. My right forefinger is hurting like crazy this morning and this scares me. Ordinarily, I would have just acknowleded that the finger hurt without the fear. That is what Earl's death did for us. It scared us terribly and brings us back up right to reality. My attitude about the ap is really good. But my main concern is just HOW macrobiotic I have to be and I guess the truth is, that the more, the better. Ethel shared with me some of her feelings about diet and this is just what I needed. Living in a city, one sees a lot of pathology. I have not seen a SD patient besides myself. It becomes easy to be foolish. I probably need to see just one and it would scare the foolishness out of me where polishing up what I have started so well would become much easier. Perhaps when I go to Dallas, I can attend one SD meeting and come face to face with others like me. I think sugar is now a past concern for me. I ate my homemade veggie soup for breakfast this morning along with one tiny small homemade biscuit. The biscuit now is a thing of the past. If I do a biscuit, from now on, it will be with an alternative flour but don't know that that will be necessary. Yesterday, I rode my bike maybe a mile for the first time in two years. About half way through, I was not sure I could go on but did and managed just fine. I am sore today but that just means I need to do more. But I was so proud and happy to be out there again! So here is my update for the SD listers. I am now five months on the AP and going strong. I do not think the iv clindy once every six months is going to hold me. I have ended up having to have oral inbetween now three separate times for either sinus or the bladder/kidney area. I am on the end of the two week oral clindy and still the bladder/kidney area is not healed. My lower quadrant of my stomach is terribly sore and just feels raw inside. I began eating a pod of garlic today and probably can walk around and not fear anyone noticing whether my deodorant is working as the garlic smell is so strong. Trial begins next Monday due to the court moving it so once that is over, I think I will be able to travel to see Dr. Sinnott and do the IV which my body is telling me that I need. As far as progression of the disease, I don't think so but cannot tell. I seem to be holding. I say that even with the darned bladder/kidney episode because this is something I have fought such a long, long time and I made it five months without an episode. I thank God that so far, my lungs seem pretty good as does my heart. My skin involvement became more pronounced in the first months on the AP but truthfully, that part of me is better. I still have my ridge of skin involvement above my eyebrows and my nose is pink but neither of those is red any more. I sleep like a baby, a real restorative rest, which I used to not do. Because of the pureness of the diet changes, my skin looks extremely healthy. I might even look five years younger due to the healthy look on my skin. I don't look sick at all! Just tired. But I think the most important aspect of getting well is not only doing the diet, water, vitamins, herbs, exercise, meditation, attitude but also the networking we all do here. I mean this. Like I said, there is no pathology here to see. It is like being placed in a solitary area. And that in itself can be dangerous. We need to remind each other how serious this is and not to slip. I am jealous of Donna and , while at the same time happy for them, having their IVs together as they mirror the disease for one another while at the same time cheering the other on. I am now reminded and back on track, albeit I was not very off to start with. Just my emotions. And that could be herxing from these clindy's but I have just picked myself up, dusted myself off and started all over again! I love all of you. God bless you, judy wiebe wrote: > brings up some very good points here. All the lifestyle changes work > together to aid in getting well. Another important aspect is maintaining a > good positive outlook and truly believing in your treatment plan. Once I > reached a decision that " yes, I believe AP will work for me " then I > proceeded down that road and didn't look back. There just was no room for > any doubts just keep on. I kept an open mind but my whole being was > immersed in doing the AP. I think with a purpose and determination like > this your body has to respond!!! Love, Judy > Re: rheumatic Scleroderma > > > Hi , > > > > This morning I posted about the scleroderma histories at > rheumatic.org/medhist.htm > > - you might find it encouraging to read them and nearly everyone has added > their > > email address so you can talk to them direct.. > > > > Some of the scleroderma patients who have recovered the most completely, > like > > Craig , seem to have done some diet modification. There was a book > called > > " Holiday from death " by Joanne Schur where she describes how she started > vegetable > > juicing. Craig took the antibiotics and also took Joanne's advice about > the > > juicing. I don't know about the dietary habits of many of the scleroderma > patients, > > but then good diet is just common sense if you are ill. If someone takes > the > > antibiotics but smokes, drinks heavily, doesn't get enough sleep, is > uptight > > and hurrying around all the time and lives on Mcs and chips then > they > > are simply not going to get well. The immune system needs to be boosted as > much > > as possible - sugary foods and junk food deplete the immune system (see > rheumatic.org/sugar.htm).. > > > > > > There is a point of no return with scleroderma. If a patient has serious > lung > > damage then the antibiotics often don't have time to reverse the disease. > Having > > said that, it's always worth starting antibiotic therapy as we have had > scleroderma > > patients with lung damage recover - one patient had demonstrable > improvement > > on x-ray results which was previously thought to be impossible.. > > > > The advantage with the IVs is that the clindamycin goes straight into the > bloodstream.. > > Oral clindamycin is definitely better than no clindamycin but the amount > absorbed > > is dependent on how much food is in the stomach. You could perhaps get to > Dr.. > > Sinnott and do the IVs in series if that schedule would suit you.. > > > > You might be encouraged by talking to some of the scleroderma patients who > have > > given us their medical histories for our web page.. > > > > Chris.. > > > > > >Dear , I wrote a couple of days ago to Ethel and asked her some > > >questions which might or might not be something I WANT to hear but need > to > > > > >hear about the " other " scleraderma patients she has known in the past. I > am > > > > >mentally " fighting " being good right now. Had a piece of pizza one day > this > > > > >week and it was sooooo good. I had one-half sandwich - my first since > > >December - yesterday. It had one piece of cheese and,of course, the > french > > > > >bread. My hands have ached today. In my mind??? I went to my monthly > > >luncheon at the club with my friends today and the birthday cake was > > >cheesecake. Had four bites with the nberry sauce (has sugar) on > it.. > > >Hands still aching. But with four bites????? In my mind??? I want her > to > > > > >tell me about the " others " . Did the ones who died do these diets on the > > >net, none at all, were they macrobiotic? I think your letter was very > > >timely as I seem to be " emotionally " grasping at the moment. I just > > >finished a week of oral clindy and am going into the second full one > again > > > > >as while the first helps immensely, the symptoms were not completely > gone.. > > > > >Dr. Sinnott said for me to get on over there as soon as conditions allow > me > > > > >to make the trip as the oral (in his viewpoint) does not work as well as > the > > > > >IV clindy. Another question, when Bob picked up my prescription, it was > > >generic clindamycine. Is this important? They did not have the true > item > > > > >in stock and I was pretty deperate so I accepted it. But for future > > >reference, I do need to know! Glad you are doing tennis and I hope your > art > > > > >show went wonderfully. > > > > > >RTC@... wrote: > > > > > >> Where are all the Scleroderma people who are taking antibiotics? Have > > >> we all been cured? There used to be regular notes from you all. I > > >> haven't been reading this board as regularly, but recently found that > > >> reading it on www.onelist.com, not getting mail works much better for > > >> me.. > > >> > > >> I wanted to start a thread, cause the newbies will think it doesn't > > >> work for Scleroderma if there are no notes.. > > >> > > >> My brief update is that I have am still feeling far better than I was > > >> before I started the antibiotics. I have spread out my clindamycin to > > >> every 12 weeks since I am doing so well. (I just finished my > > >> clindamycin week,and realize how much better I am. Once again I > > >> herxed at the beginning of the week). I also added photopheresis to > > >> my treatments.It is my 3 years anniversary on antibiotics with very > > >> little progression.. > > >> > > >> On a more personal note, Last night I was in two watercolor shows, > > >> and I am still playing tennis, even with lung complications.. > > >> (I thought I would never play again before I started the > > >> antibiotics).And people tell me I look better than I have in years! > > >> > > >> I hope you are all well.. > > >> Take care of yourself.. > > >> > > >> http://hometown.aol.com//lindartc/index.htm > > >> > > > >> ------------------------------------------------------------------------ > > > > >> Accurate impartial advice on everything from laptops to table saws.. > > >> 1/3020/0/_/532797/_/957044728/ > > > >> ------------------------------------------------------------------------ > > > > >> > > >> To unsubscribe, email: rheumatic-unsubscribeegroups > > > > > >------------------------------------------------------------------------ > > >Accurate impartial advice on everything from laptops to table saws.. > > >1/3020/0/_/532797/_/957056748/ > > >------------------------------------------------------------------------ > > > > > >To unsubscribe, email: rheumatic-unsubscribeegroups > > > > > > > > >--------------62F011985255455700A07F0E > > >Content-Type: text/x-vcard; charset=us-ascii; name= " vcard.vcf " > > >Content-Transfer-Encoding: 7bit > > >Content-Description: Card for Fain > > >Content-Disposition: attachment; filename= " vcard.vcf " > > > > > >begin: vcard > > >fn: Fain > > >n: Fain; > > >email;internet: slfain@... > > >note: scleraderma, AP December 6, 1999: Minocin 200 mg/MWF, > five > > day IV clindamycine every six months and one 900 cc iv monthly, Synthroid > 100 > > mcg, Prinvil 5 mg, Premarin 1.25 mg., Multiple Vitamin, COQ-10 50 mg, > Vitamin > > K 100 mcg, Primadophilus Bificus, IMMUNE TREE COLOSTRUM6, R Garden MSM, R > Garden > > Cordyceps, Traditional Mullein/Pan Pienn Lien, one super calcium 2/week, R > Garden > > Maximizer (enzymes), Natures Sunshine Lobelia, Vitamin O, Fenu-Thyme, Milk > Thistle, > > Evening Primrose Oil > > >Softgels, Colloidal Silver, Flax Oil, Young Essential Oils: lavender, > frankencense, > > citroin, peppermint, basil > > > > >x-mozilla-cpt: ;0 > > >x-mozilla-html: FALSE > > >version: 2.1 > > >end: vcard > > > > > > > > >--------------62F011985255455700A07F0E-- > > > > > > > > > > ------------------------------------------------------------------------ > > Get paid for the stuff you know! > > Get answers for the stuff you don't. And get $10 to spend on the site! > > 1/2200/0/_/532797/_/957165841/ > > ------------------------------------------------------------------------ > > > > To unsubscribe, email: rheumatic-unsubscribeegroups > > > > > > > > > > > > ------------------------------------------------------------------------ > High rates giving you headaches? The 0% APR Introductory Rate from > Capital One. 9.9% Fixed thereafter! > 1/3010/0/_/532797/_/957190961/ > ------------------------------------------------------------------------ > > To unsubscribe, email: rheumatic-unsubscribeegroups Attachment: vcard [not shown] Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 20, 2000 Report Share Posted August 20, 2000 Hi , Just about everything on rheumatic.org also relates to scleroderma. The approach is minocycline or doxycycline, 100-200mg MWF and scleroderma patients usually need clindamycin or lincocin injections too. Let me know how I can help, Chris. I have a friend who has a friend whose child has >Scleroderma.......I would like to give her some information about the AP as it >applies to Scleroderma. Any information would be greatly appreciated, especially >if it relates to a child. The mother thinks she has explored every avenue, and >has not even heard of the AP (oh, surprise!).......I would like to " enlighten " >her. </FONT></DIV> ><DIV> </DIV> ><DIV><FONT size=2>Again, any info would be appreciated.............be well, ></FONT></DIV> > ><!-- |**|begin egp html banner|**| --> > ><hr> ><!-- |@|begin eGroups banner|@| runid: 7749 crid: 3959 --> ><a target= " _blank " href= " 1/7749/0/_/532797/_/966830754/ " ><center> ><img width= " 468 " height= " 60 " > border= " 0 " > alt= " " > src= " http://adimg./img/7749/0/_/532797/_/966830754/greystripearia_new\ 4.gif " ></center><center><font color= " black " ></font></center></a> ><!-- |@|end eGroups banner|@| --> ><hr> > ><!-- |**|end egp html banner|**| --> > > ><tt> >To unsubscribe, email: rheumatic-unsubscribeegroups<BR> ></tt> ><br> > ></BODY></HTML> > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 27, 2001 Report Share Posted March 27, 2001 Dear Eileen, I understand your wanting to " hold on " in a matter of loss of relationship, particularly when there are children involved - and teenagers sure are children, just in a bigger packages, aren't they? It is a difficult question you ask but I will just tell you what I THINK, certainly what I don't know. Scleraderma is something that is never away from our thoughts. Probably because it is so insiduous and nasty. If we are honest, some diseases are quick and clean but you never hear anyone say anything like that about SD - just oh, what a NASTY one that is. As a result, fear is forever nipping at our heels and we lose it when we are doing really well and then let a herx comes around, or a new symptom (and the symptom could be associated with something else) and that old fear of dying this terrible, unkind death comes nipping again.) When I wrote my story, I had been going forward 40 miles an hour. Then something unrelated (although it is in a way) was discovered. Mercury toxic level which was waaaaay off the charts. So I began a new regime to try to get this out. Ended up in shock as I am allergic to EDTA and the episode of that took me waaaaay back and I had to begin to come forward again. And deal with fear AGAIN. But then came the herxes from the different drugs they were now using. I will think it is not too bad in my brain until the herxes come. Then i KNOW better. Yesterday, I thought it was Friday, end of the week at work, and it was Monday. That kind of fleeting confusion is there often. The depression is there at those times also and although I do not have to take an antidepressant, I am on a calming compound and GAPA (it is not in front of me and I think that is what it is) along with natural melatonin to aid in sleep. I don't think my depression is very much of a problem NOW but when the allergic shock blowout came and the herx followed, I was crying all the time, wondering if I would reach the point where my family wanted me to die rather than some slow die off. This kind of thinking does, indeed, come from the diseased brain. I have discussed this with others and FEAR is never far away. One of the lessons taught at this site is that sugar is not our friend but a great enemy. He is feeding the yeast - which is also in that brain - which is also feeding the disease, then. Your husband is probably his worst enemy. I know I have been at times. The problem is that this is his body and his choices and all the love and the perseverance on your part won't stop his destructive behavior for him. I know - I have a husband who has been sober for 20 years and it is still his battle - not mine. That is not cold. It is just the facts like I have to daily decide what foods I am going to put into this body. Am I going " off the wagon " and be bad to the bone and have a decaf soy milk latte or am I going to stay good this day. It is a day to day, moment to moment decision, just like yours is, whether you are going to stop and drive through Mcs or s or TacoBell - and the consequences are just different. I am usually very, very good when I weigh things but I do know there are days when I choose my departure from the strict norm. But I NEVER do alcohol. My body is now allergic to it. I knew that for years prior to my diagnosis. It hurt my kidneys and bladder and I could drink less and less without the affect. There is a man with SD at this site who does not write but his wife does. Her name is Carla and his is Dale Youngdale. I hope that is right as I am at the end of a really, really bad herx and although it is still in the brain, my thinkinn is becoming clearer and I am pain free again. Completely! Until next time when they go for more metals and that will start over again. But back to you. Dale has Scleroderma and doing really well. He is working outside in the cold Iowa winter as a car mechanic. (I don't see how he does that) You might address a letter to Dale and Carla and ask their advice from Dale's viewpoint on this disease. I believe Dale had a lot of fear to deal with at the beginning and his confidence has come with his treatment with Dr. Sinnott. So, yes, I believe your husband is definitely feeding the disease, feeding the yeast and feeding the depression in the brain with chemicals when it is already physically there due to disease. But I am not sure there is anything in the world you can do other than keep yourself healthy for yourself and the girls and for him, should something happen that he should DESIRE to change. I cannot believe that the AP would be of much help to him if he is going to kill himself with drinking but like I said, it would be good for you to get a man's point of view, like Doug, through Carla, and they are wonderful people. There are also realy good, very knowledgeable men here at this site with RA who have known their own great battles. Perhaps Geoff or Joe might be able to address this issue. Just remember that by now, your husband is battling two diseases - SD and ALCOHOL. Both are terrible diseases to overcome. You and your family will be in my prayers. This disease has been quite a journey and I know many of my remaining symptoms now are from the mercury but at the same time, a herx is stil a herx and not much fun. I have had enormous positive effects from the disease. I have learned to be still, to definitely look at things differently, certainly values have been rearranged, but my greatest gift is that my husband has become my greatest treasure. I am not sure this would have happened without having gone this route, even though I had thought we had a really good marriage. But a TREASURE? Well, that is something else. At the same time, I hear how remarkably lucky I am because women tell me a lot how spouses just don't seem to hang around for them in disease. That makes it doubly sad that you as a spouse are wanting to be his partner and be there for him but he is going on his journey alone. Warmest regards and all the prayers and hugs ((((((Eileen)))))) sent your way. I can only imagine how difficult this is for you. Love, > [Original Message] > From: Eileen <seyah@...> > <slfain@...> > Date: 3/26/2001 10:49:34 PM > Subject: scleroderma > > Hi , > > I read your story, and had to write. My husband was dx with scleroderma 10 years ago. His symptoms are mainly esophageal and GI tract, no skin involvement. He used to be a fun-loving, generous, and compassionate man. He seemed to be dealing well with the ups and downs of the disease - then started drinking. Eighteen months ago, his anger finally boiled over. He's filed for divorce, and hasn't seen our teenage daughters in over a year. He sees me as his enemy. I wonder if these changes could be related to the disease. I've read conflicting research on whether scleroderma can affect the brain. I'm not even sure why I'm telling you all this. I guess I don't give up easily, and something tells me to keep looking for an answer. Any thoughts you might have are welcomed. > > Thanks for sharing your story. I hope you're doing well, and still enjoying life each day. > > Sincerely, > Eileen > > --- Fain --- slfain@... --- EarthLink: It's your Internet. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 27, 2001 Report Share Posted March 27, 2001 I just wanted to say that after watching a movie late one night about a woman who had sclerderma. I have really learned a lot more about this illness. It truly touched my heart and I think I now have a better understanding of what this is and the different kinds of pain that are associated with this. This woman had a teenage son and had been a teacher for many years, I am not sure what happened to her husband as I found the movie after it had already started. The teenage son often refused to go see his mother in the hospital.. They did portray this woman as some what of a saint, she understood and kept smiling through it all until the end. The family was very close and the parents had a difficult time with this and letting her go because they had already lost one child years before. The woman kept fighting even to stay alive for her parents even though the pain now had gotten so that she could not tolerate it. She was on major pain killers and they showed how the illness had progressed. Her brother brought a tape for her that he made of the family and she saw herself before the illness had changed the way she looked and it showed that really hit her hard and him both. I really admire all of you who have this, not because you have this illness but because of the way you keep going and not just stopping and allowing this to take over. While watching this show which was taken from a true story I kept thinking I wish they had known about AP!!! This happened like ten years ago and there was no real treatment for her to use just meds to help her deal with the pain. It really showed all the different emotions that this family went through and how it took the daughter in law to tell them they had to give her permission to die because she was fighting for them and not for herself. At this point she was unable to speak and barely able to take in anything that was being said. Her parents finally did tell her to go, they each took time to speak to her even her son who had such a hard time with her illness and had tried to stay in denial, no longer could and felt bad about the missed visits earlier on in the movie... There were many trips to the hospital. I think that anyone who is on this list is taking a stand and saying NO I am not just going to take this, I am fighting back! This attitude has got to touch others in your lives and help them to have the power to say no to things in their own lives. I am so glad that this movie was on and I was able to catch it, it has helped me to understand better this illness and what comes with it... Though we all have pain, I believe that we should not try to say one's pain is more than anthers.. Too many of us are in pain here and yes it is different but I don't think one is worse than anothers.. I just wanted those of you here to know how much I admire your fight to not let this or any other illness take your life without a fight!! I think God for AP and I pray that it will work with each and every one of you on this list. I think even the hope that it brings to us is a blessing and helps us to keep moving forward. Even though sometimes moving at all is hard much less to move forward!!! I just had to say something after seeing this insightful movie and how the woman said maybe they will find a cure for this one day even though she knew it was too late for her she had a heart for others who would be going through the same thing. I think she was a remarkable woman...and I think we have some remarkable people on this list!! Keep saying no to this illness and continue to move forward!!! Peace, Sherry Dear Eileen, I understand your wanting to "hold on" in a matter of loss ofrelationship, particularly when there are children involved - and teenagerssure are children, just in a bigger packages, aren't they? It is a difficult question you ask but I will just tell you what I THINK,certainly what I don't know. Scleraderma is something that is never awayfrom our thoughts. Probably because it is so insiduous and nasty. If weare honest, some diseases are quick and clean but you never hear anyone sayanything like that about SD - just oh, what a NASTY one that is. As aresult, fear is forever nipping at our heels and we lose it when we aredoing really well and then let a herx comes around, or a new symptom (andthe symptom could be associated with something else) and that old fear ofdying this terrible, unkind death comes nipping again.) When I wrote my story, I had been going forward 40 miles an hour. Thensomething unrelated (although it is in a way) was discovered. Mercurytoxic level which was waaaaay off the charts. So I began a new regime totry to get this out. Ended up in shock as I am allergic to EDTA and theepisode of that took me waaaaay back and I had to begin to come forwardagain. And deal with fear AGAIN. But then came the herxes from thedifferent drugs they were now using. I will think it is not too bad in my brain until the herxes come. Then iKNOW better. Yesterday, I thought it was Friday, end of the week at work,and it was Monday. That kind of fleeting confusion is there often. Thedepression is there at those times also and although I do not have to takean antidepressant, I am on a calming compound and GAPA (it is not in frontof me and I think that is what it is) along with natural melatonin to aidin sleep. I don't think my depression is very much of a problem NOW butwhen the allergic shock blowout came and the herx followed, I was cryingall the time, wondering if I would reach the point where my family wantedme to die rather than some slow die off. This kind of thinking does,indeed, come from the diseased brain. I have discussed this with othersand FEAR is never far away. One of the lessons taught at this site is that sugar is not our friend buta great enemy. He is feeding the yeast - which is also in that brain -which is also feeding the disease, then. Your husband is probably hisworst enemy. I know I have been at times. The problem is that this is hisbody and his choices and all the love and the perseverance on your partwon't stop his destructive behavior for him. I know - I have a husband whohas been sober for 20 years and it is still his battle - not mine. That isnot cold. It is just the facts like I have to daily decide what foods I amgoing to put into this body. Am I going "off the wagon" and be bad to thebone and have a decaf soy milk latte or am I going to stay good this day. It is a day to day, moment to moment decision, just like yours is, whetheryou are going to stop and drive through Mcs or s or TacoBell -and the consequences are just different. I am usually very, very good whenI weigh things but I do know there are days when I choose my departure fromthe strict norm. But I NEVER do alcohol. My body is now allergic to it. I knew that for years prior to my diagnosis. It hurt my kidneys andbladder and I could drink less and less without the affect. There is a man with SD at this site who does not write but his wife does.Her name is Carla and his is Dale Youngdale. I hope that is right as I amat the end of a really, really bad herx and although it is still in thebrain, my thinkinn is becoming clearer and I am pain free again.Completely! Until next time when they go for more metals and that willstart over again. But back to you. Dale has Scleroderma and doing reallywell. He is working outside in the cold Iowa winter as a car mechanic. (Idon't see how he does that) You might address a letter to Dale and Carlaand ask their advice from Dale's viewpoint on this disease. I believe Dalehad a lot of fear to deal with at the beginning and his confidence has comewith his treatment with Dr. Sinnott. So, yes, I believe your husband is definitely feeding the disease, feedingthe yeast and feeding the depression in the brain with chemicals when it isalready physically there due to disease. But I am not sure there isanything in the world you can do other than keep yourself healthy foryourself and the girls and for him, should something happen that he shouldDESIRE to change. I cannot believe that the AP would be of much help tohim if he is going to kill himself with drinking but like I said, it wouldbe good for you to get a man's point of view, like Doug, through Carla, andthey are wonderful people. There are also realy good, very knowledgeable men here at this site withRA who have known their own great battles. Perhaps Geoff or Joe might beable to address this issue. Just remember that by now, your husband isbattling two diseases - SD and ALCOHOL. Both are terrible diseases toovercome. You and your family will be in my prayers. This disease has been quite ajourney and I know many of my remaining symptoms now are from the mercurybut at the same time, a herx is stil a herx and not much fun. I have hadenormous positive effects from the disease. I have learned to be still, todefinitely look at things differently, certainly values have beenrearranged, but my greatest gift is that my husband has become my greatesttreasure. I am not sure this would have happened without having gone thisroute, even though I had thought we had a really good marriage. But aTREASURE? Well, that is something else. At the same time, I hear howremarkably lucky I am because women tell me a lot how spouses just don'tseem to hang around for them in disease. That makes it doubly sad that youas a spouse are wanting to be his partner and be there for him but he isgoing on his journey alone. Warmest regards and all the prayers and hugs ((((((Eileen)))))) sent yourway. I can only imagine how difficult this is for you. Love, > [Original Message]> From: Eileen <seyah@...>> <slfain@...>> Date: 3/26/2001 10:49:34 PM> Subject: scleroderma>> Hi ,> > I read your story, and had to write. My husband was dx with scleroderma10 years ago. His symptoms are mainly esophageal and GI tract, no skininvolvement. He used to be a fun-loving, generous, and compassionate man.He seemed to be dealing well with the ups and downs of the disease - thenstarted drinking. Eighteen months ago, his anger finally boiled over. He's filed for divorce, and hasn't seen our teenage daughters in over ayear. He sees me as his enemy. I wonder if these changes could be relatedto the disease. I've read conflicting research on whether scleroderma canaffect the brain. I'm not even sure why I'm telling you all this. I guessI don't give up easily, and something tells me to keep looking for ananswer. Any thoughts you might have are welcomed.> > Thanks for sharing your story. I hope you're doing well, and stillenjoying life each day.> > Sincerely,> Eileen> > --- Fain--- slfain@...--- EarthLink: It's your Internet.To unsubscribe, email: rheumatic-unsubscribeegroups Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 27, 2001 Report Share Posted March 27, 2001 Sounds like the Movie, " For Hope " The Story about Bob Seiget's (spelling) Sister. It was meant to raise awareness of Scleroderma. I personally watched 5 minutes and turned it off when it first aired. I found it too depressing. DonnaOttawa, CanadaScleroderma, Jan.95, AP Oct.97(Ottawa Support Group - Road Back Foundation) http://www3.sympatico.ca/mousepotatoes/rbf.html scleroderma>> Hi ,> > I read your story, and had to write. My husband was dx with scleroderma10 years ago. His symptoms are mainly esophageal and GI tract, no skininvolvement. He used to be a fun-loving, generous, and compassionate man.He seemed to be dealing well with the ups and downs of the disease - thenstarted drinking. Eighteen months ago, his anger finally boiled over. He's filed for divorce, and hasn't seen our teenage daughters in over ayear. He sees me as his enemy. I wonder if these changes could be relatedto the disease. I've read conflicting research on whether scleroderma canaffect the brain. I'm not even sure why I'm telling you all this. I guessI don't give up easily, and something tells me to keep looking for ananswer. Any thoughts you might have are welcomed.> > Thanks for sharing your story. I hope you're doing well, and stillenjoying life each day.> > Sincerely,> Eileen> > --- Fain--- slfain@...--- EarthLink: It's your Internet.To unsubscribe, email: rheumatic-unsubscribeegroups Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 28, 2001 Report Share Posted March 28, 2001 Hi Eileen! Geoff Crenshaw here. Warning to all: If you get bent at this, please, just flame me privately. > Message: 5 > Date: Tue, 27 Mar 2001 9:31:40 -0700 > From: " Fain " <slfain@...> > Subject: RE: scleroderma (snip) > Just remember that by now, your husband is battling two > diseases - SD and ALCOHOL. Both are terrible diseases to overcome. I'm not going to say anything you don't probably already know, so you may want to skip this. First off, forget the hype - alcoholism is not a disease regardless of official medico-government posturing, it is a choice. Influenza is a disease. Two people faced with the same set of circumstances will chose different paths. Alcohol is just 'one' of the many paths available. Calling it a " disease " makes it " treatable " and " compensable " via insurers, and creates the legal framework for mandatory " treatment " by employers etc. Translation: it's a name game for money. You can get the man off the alcohol. You can free his body of its chemical dependence upon alcohol. But only he can choose not to use it again when the same or worse circumstances develop in the future. No matter what happens, until such time as he decides to choose a different path, he will forever be enslaved to the consequences of this choice. You know more than anyone else the fact is simple: People use crutches when faced with adversity: some use food, some sex, some alcohol, some gambling, the list is endless. If he chooses to give up alcohol, at least the man left fighting SD will be the one he craves to be, and not the one alcohol makes him. He will also be the man you love and one whom you can at least try to help and encourage. As to the disease - sugar and alcohol both serve to depress the immune system and the central nervous system. This is going to make the disease worse. How much worse depends upon his constitution and the level of damage. Sugar is problematic for most people anyway, but for him it is probably quite dangerous as alcohol is nothing more than sugar and water waiting to be broken down. A common reason alcoholics also crave sugar .. part of the chemistry creates insulin imbalance. The sugar simply fills in for the alcohol a bit quicker. BTW, in many people it's a 2-way process. Some people process certain sugars incorrectly creating alcohol... a vicious problem. (Imagine eating and becoming intoxicated while actually being a tee-totaler! (Someone who does not drink alcohol at all.)) *IF* he wants to recover from the SD, and that is a very realistic question for a person prone toward addictive, self-destructive behavior, then being free of sugars and alcohol will certainly be a step in the right direction. *IF,* however, the SD is for him simply another means to the same end, i.e., destruction of self without the blatancy of suicide, or destruction of others who care about him, then you are forced into a very difficult situation, indeed. On another note, most, if not all, of the drugs used in ANY treatment of SD are contraindicated if the patient is alcoholic. Regards, ----------------------- Geoff ** Usual Disclaimers ** ----------------------- How can you have hope? Get under the blood of the Passover Lamb. EXO 12:7-3 / MAR 14:24 / REV 12:11 http://www.healingyou.org/ Nonprofit: Herbs, Homeopathics & supp's. http://www.800-800-cruise.com/index-aff.html Make money & travel! http://www.800-800-cruise.com/ Over a MILLION travel deals! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 19, 2001 Report Share Posted June 19, 2001 welcome , I have been using antibiotics for 4 and a half years (and gamma globulin and photopheresis). It is fabulous that you found a doctor in Alberta. I can only tell you that my GP/ pulmonologist is thrilled that I have not taken immune suppressive drugs and that I am doing so well. this group is very supportive, and you will get all kinds of help In a message dated 06/19/2001 3:20:53 AM Eastern Daylight Time, rheumatic writes: Hello everyone, my name is I am from remote northern Alberta, Canada I have been following this list for a few months now and I am happy to say that I am now starting AP therapy. I had like most others, a big struggle finding a doctor, but the wait was worth the doc. I now have. I have systemic scleroderma with a lot of lung involment. I have been trying to detox myself and have become a raw food vegan I also take supplements and have found my gastro problems are so much better . Basically for my first post I just wanted to tell the group how glad I was to find a group of people who are taking charge of their illness and their recovery . In closing I just want to make a comment about cyclophosphomide, My new doctor who has been working with the AP therapy for many years stated how glad he was that I had refused to take it has he has seen the damage it can cause, and the body will only tolerate the drug for so long, then what ? When I had it prescribed for me I looked into the studies then made my decision from there, I then told the doctor I wanted the AP therapy he wrote in my chart that I was unco-operative and never returned my call , sound familiar ? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 3, 2002 Report Share Posted June 3, 2002 Hi , My daughter has had scleroderma for six years now, five on the antibiotics, and her alternative doctor has her take plenty of vitamin C. It can be taken to bowel tolerance - until you start to get diarrhea - and then you back off to a dose you can tolerate. It varies from person to person. Chris. >Hi everyone. Still lurking but always reading and appreciating your posts.> I heard on a radio program this morning about taking a lot of vitamin C h>elps the aging of your skin, because it has collagen. So my question, is a>re people with scleroderma not to take too much vitamin C? Thanks for your> reply, and how much vitamin C do you take. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 3, 2002 Report Share Posted June 3, 2002 Hi Vitamin C is very important to the extent of Collagen. Collagen is very important to our health. This is a good site explaining Vitamin C and Collagen http://www.howstuffworks.com/vitamin-c1/htm It also has other helpful information on about anything. Hope this helps some! Lonnie http://www.activexamerica.com/at.cgi/187007/arthritis --- and Chas Adlard <cadlard@...> wrote: > Hi , > > My daughter has had scleroderma for six years now, > five on the antibiotics, > and her alternative doctor has her take plenty of > vitamin C. It can be taken > to bowel tolerance - until you start to get diarrhea > - and then you back off > to a dose you can tolerate. It varies from person to > person. > > Chris. > > >Hi everyone. Still lurking but always reading and > appreciating your posts.> > I heard on a radio program this morning about > taking a lot of vitamin C h>elps > the aging of your skin, because it has collagen. So > my question, is a>re people > with scleroderma not to take too much vitamin C? > Thanks for your> reply, and > how much vitamin C do you take. > > > > > > > > > > ===== FREE Subscription Arthritis Chronicle Newsletter http://www.activexamerica.com/at.cgi/187007/Newsletter __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 4, 2002 Report Share Posted June 4, 2002 Hi , >I had my iv done today and the nurse who gave it to me said she had scleroderma and her sister and mother also had it. I thought this was not hereditary. Dr. Brown believed that the organisms can be passed from mother to baby in the vaginal tract during birth. Chris. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 7, 2002 Report Share Posted June 7, 2002 Group, I recently read another scleroderma patient's post saying that too much collagen is a problem in scleroderma. I am not an SD patient. Perhaps someone " in the know " about this might clarify it for us. We wouldn't want SD patients building up more collagen if this statement is true -- which I don't know a thing about. bg > > Hi , > > > > My daughter has had scleroderma for six years now, > > five on the antibiotics, > > and her alternative doctor has her take plenty of > > vitamin C. It can be taken > > to bowel tolerance - until you start to get diarrhea > > - and then you back off > > to a dose you can tolerate. It varies from person to > > person. > > > > Chris. > > > > >Hi everyone. Still lurking but always reading and > > appreciating your posts.> > > I heard on a radio program this morning about > > taking a lot of vitamin C h>elps > > the aging of your skin, because it has collagen. So > > my question, is a>re people > > with scleroderma not to take too much vitamin C? > > Thanks for your> reply, and > > how much vitamin C do you take. > > > > > > > > > > > > > > > > > > > ===== > FREE Subscription > Arthritis Chronicle Newsletter > http://www.activexamerica.com/at.cgi/187007/Newsletter > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 19, 2002 Report Share Posted August 19, 2002 Hi , Janene used to get dizzy due to low blood pressure, but as high blood pressure is such a problem for scleroderma patients, she didn't worry too much about it. Many people get dizzy when their minocycline dose is too high for them at that particular time. Chris. > >Hi. Does anyone who has scleroderma on this site, experience dizziness? Thanks. > > > > Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.