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Post by Christine on Jun 15, 2009 13:06:43 GMT -5
Hi Cubby; YES IT"S ME.Finally figured out this site but it seems that there are 2 of me.One shows my biline at the bottom and the other as a guest.When I sighned up at proboards there was no problem but you said you could not find me so I redid it on this site.
I am only taking 100mg every other day of mino,150every other day of clindamycin and 150mg of zith every 2 weeks.Different antibiotics for different micoplasma and it is working just fine. If I miss an antibiotic for more than 3 days I feel the SD trying to break through again so I guess I will be on it for life.My sister has MCDT and Lupus and is on MP as lupies can't take high dose antibiotics.If she reaches a cure I will try to do the same.I really think there is something to MP but don't have the time or courage to deal with it now
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Post by Cubby on Jun 15, 2009 17:17:40 GMT -5
CHRISTINE10: Just make sure u sign in with the password and ID u use for CHRISTINE10.
If u have one that says CHRISTINE, which has u as a guest, don' t use that one anymore. Not sure if you can delete it or not. If u can, delete that one.
I made that mistake when I was trying to create this board. I had a cubby, then another one as administrator. In fact, I still have both but don't use the other one anymore.
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Post by christine10 on Jun 15, 2009 20:03:00 GMT -5
Cubby; I will just use christine 10 and ignore the other.I am so glad to hear how well you are doing.Way to go!
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Lindar
Junior Member
Posts: 52
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Post by Lindar on Jun 16, 2009 8:58:06 GMT -5
My hands are also dark but do any of you experience a purpelish colour as well?
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Post by Cubby on Jun 16, 2009 16:05:27 GMT -5
I do not have purplish color on my hands. However, I do have what looks like bruises on my one leg. I am now finding out from cherylf and also from Christine10 that the bruises are from the Minocin (ap)
Linda--are you on the AP?
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Post by Cubby on Jun 16, 2009 16:14:07 GMT -5
GRAMMIE: I go to water aerobics everyday (weekdays). I am covered from my toes to the top of my head with water clothing--tights, shorts, shoes, rash guard, hat and sunscreen. That keeps me from getting too tan. But, when I go to the beach, I don't wear all that. I lather up with sunscreen and sit under an umbrella. It is a big pain, but helps with me getting too dark. I have red hair so I look stupid with such a tan. If u go to PHOTOS, you will see what I mean. The UGLY photos are of me with my face tan (3 weeks ago). Also, my hair looks frizzy because I took METHOTREXATE before I ever discovered AP. Made a lot of my hair fall out and it came back curly.
Then, there is the really nice photo of me (4 years ago) when I was just getting really really sick but my skin had not darkened yet. (I had had SD over a year by then). I am really pale. This was during the Methotrexate when I had lost a LOT of hair which is why I had it so short. BUT, no wrinkles!!!!
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Lindar
Junior Member
Posts: 52
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Post by Lindar on Jun 16, 2009 23:01:44 GMT -5
Hi Cubby, I'm not on AP, my sd rheumy's seem to think there is not enough info to support it. I'm on 150mg of Imuran daily. Funny enough, they had me on Imuran from sometime in 2007 to Sept 2008. One of sd rhuemy's took me off at that point, he felt imuran wasn't working for me anymore the way the sd was progressing. I only lasted 4 mnts as the sd was very active and progressing severly. I wasn't on anything for 4 months. When I went back in Feb 2009, the other sd rhuemy (they work together at same clinic) put me back on imuran, said wanted to give another try. I can't go on metho cause of asthma and some fibrosis, next course would be cyclophomosamine. which she is trying to stay way from it if possible. I really don't want to do as I seen what it did to my father for cancer.
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Post by Cubby on Jun 17, 2009 20:11:07 GMT -5
LINDA: Tell me to go to H... if you want. But, have you considered reading the Henry Scammell Book SCLERODERMA--THE PROVEN THERAPY THAT CAN SAVE YOUR LIFE? It talks about AP.
All I know is this: I went to a doctor who is one of the biggest DOCS in the Scleroderma Foundation. He gave me a 3% chance of surviving. I was pretty much bedridden for about 3/4 of 2005 and 1/4 or 2006 or something like that--can't remember some of it.
I had "accidentally" found the Scammell Book along with the book my big, important doctor helped write. The doctor's book was depressing. The Scammell book was outdated and the research in it was very old and very small.
I told the doc I wanted the AP and he had a fit! Said it does not work. He still says that to this day. He has no idea I did not die. He does know, however, that my friend died under his care.
So, I am not saying don't listen to your doctor. But, please consider getting that book or at least another opinion.
I tried it anyway and here I am today, almost in remission. Would you consider getting the book? No need to answer, just want u to get better.
ALSO, Lauren, who used to post here and now is on INSPIRE went into remission after about a year on IVIG and cellcept. Perhaps you could ask your doc about those options.
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Post by christine10 on Jun 17, 2009 20:44:14 GMT -5
Linda; I was in the same boat as Cubby and given less than a year to live.Today,if you were to see me you would never know that I have SD.The only thing left is tight cuticles.I own my own business,an orchid greenhouse with about 15-16000 orchids.This is a tremendous amount of work as everything has to be repotted every year.We travel to shows that are judged by the American Orchid Society so things have to be absolutely perfect.We use 6 of those honking big logging trucks of wood a year for heating.They dump the trees(minus branches) in the driveway so we have to cut and stack it all.The logs are as big as me once cut and probably weigh even more.The boiler has to be filled every 4 hours and that means getting up in the middle of the night to do so.Supper is never before 20:30 as the housework only starts around 19:00.I go to bed at 01:00a.m. and start all over at 07:30.I admit to be tired at times but never enough to stop me in my tracks. I started this disease around age 50 and am now 63 but look 50-53 according to my acquaintances.Not bad for an old girl. hehehe It took several years with several antibioic combos and a dietary dicipline that is a real pain but look at me now. If you really want to understand the theory of AP you should read www.bacteriality.com Do not read it for the info on MP but for an understanding of rheumatoid diseases
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Lindar
Junior Member
Posts: 52
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Post by Lindar on Jun 17, 2009 21:48:02 GMT -5
Thanks Cubby and Christine, Cubby, I would never think of telling you to go to H--- or anywhere else for that matter Nor would I with anyone else on this board. Christine has provided me with a dr here who provides AP. Kathygirl also knows of one about 45mins from my home as well. YES, I will, for you as well as myself look further into AP treatment. I'll also check into that book as well. Hope they have it on a tape cause I hate reading.... LOL. I'm just getting so tired of feeling this way and the side effects from all the drugs. When I get a med I read the side effects, how the heck can we tell if we're having a reaction to a specific drug when you're already feeling that way. Sorry for going on but it's been a really bad week for me. I've been at the cottage since last Tues and I'm just starting to relax but having too many bad days..... to much stress before I left and stress here. I'm execatrix of my Dad's estate and I need to make a decision on the cottage property, not getting much help from my siblings. Anyway, sorry again and yes, I will look further into AP after I get home. Thank you so much. And I loked at your pics and you are a beautiful gracious woman.
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Post by steve201 on Jun 17, 2009 22:31:27 GMT -5
Lindar I also have to rave the affects of ap...I wasn't given 6 mos to live at the time I was dx'd...after starting cytoxan/prednisone...it showed that it basically stopped the progression but I wasn't improving...so...after showing some data that supported ap...my doc said whatever it takes and ordered me on minocycline....about a yr later we changed to tetracycline (that I'm on to this day)...9 yrs later I'm still vertical and alive....gotta love it..I've improved and my lungs went from 28% loss to 20% loss....I'm getting better slowly but surely....no skin hardening..internal organs have returned to normal...cept I'm still a bit gassy after drinking milk ;D ;D
so...naturally we really advocate ap therapy cuz it worked so well on us...some haven't been able to tolerate ap...but overall..if you can get a doc to prescribe low level long term ap treatments....the better your going to be....
I also advocate physical therapy....something to increase your strength and stamina...anything....walking to the end of the drive or walk and back...water aerobic's....free weights....sky diving...anything....even the WII game....something that gets you off the couch...
Steve
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Lindar
Junior Member
Posts: 52
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Post by Lindar on Jun 17, 2009 23:15:00 GMT -5
Thanks Steve, I'm so glad that all of you have found the AP to be so successful and are doing so well. I guess the problem that I have is that I've always been told that your system becomes immune to anti-biotics (as well as anything else) and when you really need them for something they won't work. My husband also has the same mentality so I'm not too sure how he would feel about it as well. I know he does not like any of the side effects that my current or future meds do to me and it really bothers him to see me on my bad days. It is something that I am going to investigate but am also concerned that I may have a relapse. However, I'm not going to know unless I try it....... nothing lost, nothing gained.... think I said that right. Linda
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Post by jeffn on Jun 18, 2009 15:18:38 GMT -5
Linda not to twist arms because I really do feel that first and foremost all of us need to do what we feel is right for us in regard to treatment. I would though like to address a couple of your thoughts. In regard to becoming antibiotic resistant it is my understanding that the cycline (minocycline, tetracycline, and doxycycline) family of antibiotics work to eradicate bacteria in a different manner than the newer anti-antibiotics. In addition the cyclines are not prescribed very often anymore if and when you need the new high powered versions because they work differently you have not developed any resistance to the newer versions. Interestingly a few years ago just after I was Dx but had yet to start AP I had a sinus/ear infection my GP said at the time he was going to put me on a "old time" antibiotic because so much of the stuff that was going around locally at the time was resistant to the newer antibiotics and he did not want me "any sicker than I already was". He put me on either Doxy or tetracycline. Worked great. As Cubby mentioned the Scammell book addresses many of these issues. Your other thought about what happens when you really need them strikes home with me because I get this a lot from people. Both the resistance part and the need part. The first part about resistance I have detailed above but when asked about the need I generally note that I was in pretty bad shape - thinking about dying - thinking about not wanting to live in the condition I was heading to and things along those lines. At one point when someone asked me about waiting until I really needed antibiotics it dawned on me that When would I need them more? Sort of like taking your star player out to rest in the ninth inning in the seventh game of a world series. What would I be saving it for? I came to the conclusion that if and when something else came up I would cross that bridge then. I found they give this med to teenagers for acne long term and acne while not a happy thing pales in comparison to SD. I thought if acne is worth the risk/benefit wouldn't SD be also?
It was easy for me in that my doc at that point did not have me on any SD meds so I figured the time while I was waiting would be a good time to try AP. It appeared relatively low impact particularly when compared to what he was thinking about putting me on later so I gave it a shot. Also if I thought it was helping and he still wanted to put me on additional meds I probably could continue to take the mino along with the new more traditional things.
If you are at all curious - again not arm twisting - the Scammell book is the place to start. It is a quick read and does a good job of explaining the ups and downs. Then if you are still curious there are other places to check out but I feel strongly that his book is the place to start for most.
I truely wish you good results with any meds you take. Hang in there and be well.
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Post by Cubby on Jun 18, 2009 16:45:39 GMT -5
LINDA R:Thee are actually about 30 of us on AP. No, that does not mean the entire world has to run out and get on AP. However, for 30 of us, it worked. Take a look at the AP section of this board. I just posted something that I put on the ROADBACK.ORG board in 2006. Boy, do I remember those days!!!!! I AM SO HAPPY I just can't tell you.
PS: Thank you for the kind words about my ugly fat photos!!!
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Lindar
Junior Member
Posts: 52
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Post by Lindar on Jun 18, 2009 19:59:44 GMT -5
Jeff, thank you for all of your information. I'm glad that you had the opportunity for this treatment and that it has worked for you. I apologize and understand what you are saying about the use of anti-biotics. I do admitt my ignorance in knowing about AP. I have never met anyone with SD, have only read threads and have spoken to a few of you. I am not nearly as sick as some of the others on these boards. This is no excuse, however, I took care of my Father for 4yrs until he passed away in my home.He had Multiple Myeloma, a plasma cell/bone cancer, at which time I was finally dx'd around the same time of his dx. I concentrated on his illness and never took the time to research into my own. It's been 2yrs since his death and I'm still not over it. Allthough I learned a lot how to deal with dr's and to get involved in your own healthcare, I have basically left my care to the dr's. I know that I have to get involved in my own care and fight for what I want, which I have been now for over the past yr. I will be the first to admitt that I'm still probably in denial about how serious this could become for me. For some reason though, I cannot get it to stick and be a reality in my head. Maybe because I am still dealing with other issues, I don't know. Something I need to discuss with my Psychotherapists.
Cubby, I did read your post. It's sad to read that her friend was about to go on AP and passed away prior to getting the chance. As I mentioned in previous discussions, I am going to look into AP as well as any other treatments etc that are available.
I know that sd effects everyone in different ways and what works for one may not work for another. We all need to be involved in our own healthcare and do whatever possible to delay the progression of this disease for ourselves and our loved ones.
Linda
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