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Post by beebell on May 22, 2009 8:28:11 GMT -5
A year ago I was diagnosed with Defuse Scleroderma. I had a Dr that had no clue how to treat it. He pretty much told me there is no cure and treatments don't work goodbye. I got on the SD foundation board and Cubby came to my rescue she lifted me up on that horrible day. At that time I could not extend my arms and my fingers were slightly curled and I was in so much pain I felt like the tin man. I was recommended to Dr Franco in CA I jumped into hope! I knew this was the right Dr for me. Now a year later this Crap is leaving my body and I have my life back! Lab numbers don't lie! AP works! I no longer feel like the tin man! No need for pain meds I can extend my arms and my hands are almost back to normal. We put our trust in our Drs but not all of them should be trusted. Educate yourself and be an informative patient. Find the Dr that is god like willing to do Gods work by helping the sick. NOT a Dr that thinks he's God. ... lol
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Post by sherion on May 22, 2009 19:02:48 GMT -5
Beebell, How wonderful that you were able to find a doc to do the AP. and how much more wonderful that it is working for you!!!! Sounds like you were given back your life!!!
Sherion
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Post by beebell on May 23, 2009 8:54:17 GMT -5
Thank you! Yes I have my life back! A year ago it was terrible I was in so much pain. Praise God! I'm doing better with my life 2nd time around. Taking care of myself better. I no longer eat dairy, beef or extra sugar. Changing diet really helps. I don't miss any of it my body is balanced I feel so much better. Don't get me wrong I still have my days with the mental strain to stay strong and keep fighting takes its toll but I work through it.
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Post by antonietta46 on May 27, 2009 13:49:18 GMT -5
I went on AP 2 1/2 years ago it's been the most amazing journey for me. First stiffness, curling fingers, jaunice looking skin. Now I can move, work and enjoy life with my family and friends. Wish this for all those who are suffering with scleroderma.
Antonietta
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Post by sherion on May 27, 2009 19:12:27 GMT -5
That's WONDERFUL, Antonietta!!!!! So happy for your success with AP.
Sherion
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Post by Cubby on Jun 4, 2009 22:05:35 GMT -5
Most of you know my story. I was going to the alleged TOP DOCTOR IN THE COUNTRY. I was getting worse and worse and found out about AP. He had a fit that I wanted that (even tho he gave me a 3% chance of surviving) and told me to find another doctor. I did! Now, I have my life back. I have personally met some of the members of this board and Inspire and they can attest to how well I am doing. (Sammie, Steve201, Nancy Paul, Lauren, CherylF, Lucy5).
BEEBELL: Thank you so much for your comment, it almost made me cry. I an SOOOO happy you are doing so well!!!!
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Post by maryharb on Jun 19, 2009 23:40:03 GMT -5
what all is involved in AP treatment of scleroderma. pieplate
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Post by beebell on Jun 20, 2009 9:23:48 GMT -5
maryharb- AP is Antibiotic Protocol. I'm on Minocin 100 2 x's a day and Clindamycin 300mg 2xs a day for some they get IV of Clindamycin once a month. With that I take lots of good nutritional supplements that my Dr provides to help keep intestinal health strong etc. Im doing really well and many others too.
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Post by Cubby on Jun 20, 2009 12:52:23 GMT -5
I wrote this before I noticed Beebell's comment above. But, just to say it again: AP is the antibiotic protocol. It usually means taking Minocin, or the generic MINOCYCLENE, 100 mg 2 x per day. Some people also go to the doctor and get IV antibiotics.MOST PEOPLE TAKE JUST THE PILLS. A few like me, take another treatment along with it. A few take cellcept or cytoxan with it. I do PHOTOPHERESIS with it. BEEBELL is taking 2 antibiotics.
I found out about AP from a book written by Henry Scammell--SCLERODERMA--The Proven Therapy That Can Save Your Life. it is available at bookstores or they can order for you, or at amazon.com It is a really easy read, can be read in a day.
CAUTION: A lot of doctors don't believe in it, but if you do read the book and decide to try it, let us know.
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Post by christine10 on Jun 27, 2009 20:54:32 GMT -5
Hi Mary; I am in total remission.Like Cubby,I was not given long to live.AP was a long trip for me as it did not work until I found out that I had Celiac and multiple food sensitivities that were caused by it.My immune system could not fight both and there was no progress until I was gluten free for a year or so.I have the second best AP doctor in Canada and she suspected it right away saying that over 70% of people with any chronic disease has celiac ,which never goes awayor celiac syndrome which will if one is super careful for a few years.I only found this wonderful doctor after we moved from Niagara to the Montreal/Ottawa area. My family doctor and rheumy both agreed to let me try AP but did not know enough and I did not progress until finding my holistic doctor.I did so well that I have not seen a rheumy in 4 years. You really should give it a try.If you can't find a good doctor the Roadback foundation has a very good list. Lynne Christine
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Post by Cubby on Jun 28, 2009 20:50:44 GMT -5
MARYHARB: Christine is right, see if your doc will let you try it. Also, get the book by Henry Scammell SCLERODERLA THE PROVEN THERAPY THAT CAN SAVE YOUR LIFE. (bookstores or Amazon.com--can read in one day, cost is est $15.00). That is where I found out about it. Then, had to find a doc who would give it to me.
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Post by grammie on Jul 15, 2009 14:25:05 GMT -5
Christine10, You made an interesting point about celic and its relationship to other auto illnesses. I've heard this before. There was a discussion at one time about those who are following that diet. My daughter and grand daughter are celic and live with us durning the summer (whole family does). My daughter does the cooking so I am basically celic diet for the summer. It will be interesting to see if I continue to improve (on Ap since March) or if I 'slip' a bit when they leave next month. I'll make a note of it to watch.
grammie
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Post by jeffn on Jul 15, 2009 16:09:12 GMT -5
Hey Grammie was thinking about you just yesterday. How are things going and how is life on the lake?
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Post by grammie on Jul 16, 2009 14:24:10 GMT -5
Hi there, doing okay. Sure am better this summer than last, if you can call this 'summer'! Sure am a golden tan due to the two meds I'm on and both sun sensitive! Get comments and I just smile!
Had lots of family here to enjoy and Ralph and I went to North Conway for a week to celebrate our 40th wedding anniversary. We had a really nice time even in the rain.!
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aajmom
Junior Member
Posts: 76
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Post by aajmom on Jul 16, 2009 16:24:11 GMT -5
I haven't been on the board for awhile- busy with family stuff and really want to be outdoors when I'm free- but reading this thread is SO UPLIFTING!! I too am on minocycline 100 mgs 2x/day and am doing well. It's always wonderful to hear how others have really turned things around and are doing quite well! I'm so happy for all of you!- beebell, antonietta, cubby christine10, and grammie!!
I am a FIRM believer in finding a doc who is knowledgeable,who is open to trying different things and someone you like and can trust! I feel it's one of the keys to fighting this disease!
Thanks to all for putting a smile on my face this afternoon when reading this thread!- Adriane
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