Guest guest Posted April 27, 2002 Report Share Posted April 27, 2002 nice to have good new from Inhae. I tried naturals medecine and vegan diet 4 years ago for Coralie and too. It didn't work enought. But i know it work for some ot rpers. Coralie went back to hospital yesterday .She has to had a bollus (3 days with 1000mg of pred by iv) Maybe immuran is not enough.I'm still waiting the decision of the DRS for .He began on tuesday immuran 100 mg/d and 40mg/d of pred. I waiting fo another good news from you daughter. Be strong: a mother to a other mother Big kiss to Ihnae and you too Marie-pia Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 27, 2002 Report Share Posted April 27, 2002 Hi, all members This is Moonsung. My family are visiting Korea and staying here until Inhae's flaring comes down into remission. She has scleritis (not uveitis yet) and costochondritis with moderate pains and is on PD 20mg, Azathioprine 100mg and cyclosporin 200mg. She will see her new Rhumy next Monday and discuss about the medication plan. At the last consult with her eye Dr., he said that Inhae's vision and eye-pressure were normal and her scleritis should be treated by Rhumy, not by himself. Cyclophosphamide and remicade may be options for us to choose in next step. One is too toxic and the other is too expensive. Any other options ?? A good news - I have read books written by a famous natural therapist in Korea, saying that Chronic fatigue sydrorome disease, Diabetes, Mutiple sclerosis, Leukaemia, Endometriosis, even many kinds of cancers can be " cured " by some combination of natural therapies. While reading the book and comparing with my experience, I feel there may be a chance or possibility to cure, or to improve at least, my daughter's episode. The original therapy was developed by a Japanese healer in early 1900's and improved by several medical doctors and natural therapists in Korea and Japan. Even though there is no clinical case of RP in their records, I will take this chance while staying here, because there were many successful cases of other auto-immune diseases. From 1 May,Inhae and I are going to attend a 10-day-seminar to learn the details on the therapy. It seems to be consisted with fasting, vegetarian diet with baked sea-salt, bathing(water & wind) and daily excercise. All therapies can be done by patients, him/her-selves. I really hope it works and helps Inhae and all RP-ers. Please pray for Inhae to get successful result from this adventure. Will update after return from the seminar. Sincerely, Moonsung Jun. _____________________________________________________________________ ¶Ç ´Ù¸¥ ³ª! ±ôÂïÇÑ ¾Æ¹ÙŸ ¸¸µé±â - ¾ßÈÄ! ¾Æ¹ÙŸ http://avatar.yahoo.co.kr/ ÇÏ·çÁ¾ÀÏ À̾߱âÇصµ ½Ã°£°¡´Â ÁÙ ¸ð¸£´Â - ¾ßÈÄ! äÆà http://chat.yahoo.co.kr/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 27, 2002 Report Share Posted April 27, 2002 Dear Inhae and Moonsung, I am sad to hear that Inhae is suffering. One of my first symptoms of this disease was costochondritis. It was very painful. The Prednisone did help. When I was finally diagnosed with RP I was given a treatment plan of Cyclophosphamide (Cytoxan) and Bactrim (an antiobotic). I was afraid that the Cyclophosphamide would make me feel terrible but it did not. The doctors should prescribe a dosage that is appropriate for Inhae's size and weight. The good news for me is that Cyclophosphamide worked for me. After one year I am so much better. The doctor said to quit taking it but I will now take Azathioprine (Imuran) and Bactrim. I have combined this Western medicine with natural therapy with much success. My diet is vegetarian and I prepare all of my food to eliminate preservatives and unwanted chemicals and I exercise and practice Yoga every day. American doctors do not promote physical or nutritional changes very much. But during my recent appointment at the Mayo Clinic one of my doctors said that he expected to see a lot more autoimmune diseases in the future because of all the preservatives and chemicals in our food. My treatment plan will continue for the rest of my life. I do not think many patients would make such drastic changes in their lives but I had no choice as the damage to my airways was very bad. But now it is much improved. This is why I am so glad that you are taking responsibility for Inhae's care. I just don't think that we can expect doctors to make us well with just pills. We patients must also remember that we own this disease. Please let me know how Inhae is doing. I would be interested in the natural therapy you choose and how it is working. After ten long months I woke up one morning and my breathing was better and I felt almost normal again. I pray Inhae will get better also. I will keep praying that you find a good treatment plan for her. Would you please email me at " katdavis@... " or post to this group and let me know how you and your daughter are doing? My love to you and Inhae, > Hi, all members > > This is Moonsung. My family are visiting Korea and > staying here until Inhae's flaring comes down into > remission. > > She has scleritis (not uveitis yet) and > costochondritis with moderate pains and is on PD > 20mg, Azathioprine 100mg and cyclosporin 200mg. She > will see her new Rhumy next Monday and discuss about > the medication plan. > > At the last consult with her eye Dr., he said that > Inhae's vision and eye-pressure were normal and her > scleritis should be treated by Rhumy, not by > himself. > > Cyclophosphamide and remicade may be options for us > to choose in next step. One is too toxic and the > other > is too expensive. Any other options ?? > > A good news - I have read books written by a famous > natural therapist in Korea, saying that Chronic > fatigue sydrorome disease, Diabetes, Mutiple > sclerosis, Leukaemia, Endometriosis, even many kinds > of cancers can be " cured " by some combination of > natural therapies. > > While reading the book and comparing with my > experience, I feel there may be a chance or > possibility to cure, or to improve at least, my > daughter's episode. > > The original therapy was developed by a Japanese > healer in early 1900's and improved by several > medical doctors and natural therapists in Korea and > Japan. > > Even though there is no clinical case of RP in their > records, I will take this chance while staying here, > because there were many successful cases of other > auto-immune diseases. > > From 1 May,Inhae and I are going to attend a > 10-day-seminar to learn the details on the therapy. > It seems to be consisted with fasting, vegetarian > diet > with baked sea-salt, bathing(water & wind) and daily > excercise. All therapies can be done by patients, > him/her-selves. > > I really hope it works and helps Inhae and all > RP-ers. > > Please pray for Inhae to get successful result from > this adventure. > > Will update after return from the seminar. > > Sincerely, > > Moonsung Jun. > > > > _____________________________________________________________________ > ¶Ç ´Ù¸¥ ³ª! ±ôÂïÇÑ ¾Æ¹ÙŸ ¸¸µé±â - ¾ßÈÄ! ¾Æ¹ÙŸ > http://avatar.yahoo.co.kr/ > ÇÏ·çÁ¾ÀÏ À̾߱âÇصµ ½Ã°£°¡´Â ÁÙ ¸ð¸£´Â - ¾ßÈÄ! äÆà > http://chat.yahoo.co.kr/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 27, 2002 Report Share Posted April 27, 2002 , You're post brought tears to my eye'e! How true what you wrote. You are a true inspiration to all I am sure! You wrote: " " American doctors do not promote physical or nutritional changes very much " " " and this is so true I will never understand why not. I look forward to read more post's from you! P. > > Hi, all members > > > > This is Moonsung. My family are visiting Korea and > > staying here until Inhae's flaring comes down into > > remission. > > > > She has scleritis (not uveitis yet) and > > costochondritis with moderate pains and is on PD > > 20mg, Azathioprine 100mg and cyclosporin 200mg. She > > will see her new Rhumy next Monday and discuss about > > the medication plan. > > > > At the last consult with her eye Dr., he said that > > Inhae's vision and eye-pressure were normal and her > > scleritis should be treated by Rhumy, not by > > himself. > > > > Cyclophosphamide and remicade may be options for us > > to choose in next step. One is too toxic and the > > other > > is too expensive. Any other options ?? > > > > A good news - I have read books written by a famous > > natural therapist in Korea, saying that Chronic > > fatigue sydrorome disease, Diabetes, Mutiple > > sclerosis, Leukaemia, Endometriosis, even many kinds > > of cancers can be " cured " by some combination of > > natural therapies. > > > > While reading the book and comparing with my > > experience, I feel there may be a chance or > > possibility to cure, or to improve at least, my > > daughter's episode. > > > > The original therapy was developed by a Japanese > > healer in early 1900's and improved by several > > medical doctors and natural therapists in Korea and > > Japan. > > > > Even though there is no clinical case of RP in their > > records, I will take this chance while staying here, > > because there were many successful cases of other > > auto-immune diseases. > > > > From 1 May,Inhae and I are going to attend a > > 10-day-seminar to learn the details on the therapy. > > It seems to be consisted with fasting, vegetarian > > diet > > with baked sea-salt, bathing(water & wind) and daily > > excercise. All therapies can be done by patients, > > him/her-selves. > > > > I really hope it works and helps Inhae and all > > RP-ers. > > > > Please pray for Inhae to get successful result from > > this adventure. > > > > Will update after return from the seminar. > > > > Sincerely, > > > > Moonsung Jun. > > > > > > > > > _____________________________________________________________________ > > ¶Ç ´Ù¸¥ ³ª! ±ôÂïÇÑ ¾Æ¹ÙŸ ¸¸µé±â - ¾ßÈÄ! ¾Æ¹ÙŸ > > http://avatar.yahoo.co.kr/ > > ÇÏ·çÁ¾ÀÏ À̾߱âÇصµ ½Ã°£°¡´Â ÁÙ ¸ð¸£´Â - ¾ßÈÄ! äÆà > > http://chat.yahoo.co.kr/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 28, 2002 Report Share Posted April 28, 2002 Moonsung Jun, thank you so much for the update on Inhae. Please be sure to let us know about the seminar. I am interested in what you learn. I'm so happy that your family can be there for both of you. PLease give Inhae a big hug for me. Tell her she has MANY people thinking of her and wishing her well. hugs Quote Link to comment Share on other sites More sharing options...
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