Antibiotic Protocol for scleroderma

Hi--is anyone on AP for treatment of scleroderma and if so what and do you find any improvement from this? I was talking w/my doctor about it at my last appt. and he is not opposed to having me try it but I am doing a little research first.

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I am in total remission and have a normal working like crazy life again.If you want to check out AP go to www.roadback.org for info and their bulletin board www.rbfbb.org to read posts by other SDers to see how they are doing and ask questions.If you decide to try it they have a good list of doctors.
Lynne C.

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Hi,

Thanks for the reply...are you in total remission from any special kind of treatment? How long have you been diagnosed? How long did total remission take for you?

Karen

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Hi;
I was diagnose back in 1998 but figure I must have had SD for several years before as I was feeling crappy.Rotator cuff problems and severe neck ache which I now know was caused by Lyme which in turn caused the SD.I was on AP for several years without it helping and that is when my doctor found out I had Celiac.It took a good 18 months to reverse the damage it cause,i.e leaky gut and systemic yeast.Then AP started to really help.Last year my doctor said I could go off the antibiotics but my SD tried to come back in a couple of months.Now my doc was looking for an other cause to the SD and we found out I,like many,many SDers have Lyme disease.Now I am on heavy hitting antibiotics and trying to stop the Lyme which will affect one pretty well in the same manner as syphilus.In fact they are very similar diseases.
All traces of my SD are GONE

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Did you have the tight skin? and it's gone? That is what I am hoping will happen--mine is starting to soften in spots--never heard of Celiac..am gong to give the AP a shot--I figure it's pretty benign in terms of side effects and what I have to lose..many pros and cons out there for it though. All my organs are fine...mine is skin more than anything

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Please read my journals. I've been on AP for one year and went from extreme sickness to complete health! Also, read Cubby's jounal entries. Many of us on this site have had major success and we'd love to answer your questions. Blessings.

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>I was diagnosed last June though my first symptoms started in February of 2008. I had skin tightening and couldn't make a fist along with digestive problems and trouble swallowing. I started AP 100 mg minocycline 2x day in August. Within five weeks I was able to make a fist and the tightening eased up and now is almost nonexistent. I no longer have difficulty swallowing and the reflux and hiatial hernia are gone. When I first started taking minocycline I has slight nausea but that too has subsided. All in all it was worth it I am still on the same dosage and it will be a year in August. I still have other scleroderma related problems, nothing serious but I have a lot more energy than I used to have. I think the idea behind the AP is to slow down the production of collagen though I am not sure. Good luck and keep us posted on your progress.

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Christine do u mindme asking if your face went back to normal when u went into remission. Did your lips come back and face shape

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Hi Stephy;
Since all the collagen made my skin stretch and tight I had a real schock when the collagen left and the skin wrinkled and sagged.YIKES! what I would give to have a bit of it again.My face is totally normal and I now look like any other person in her sisties.My lips did not fully come back and I have lines over my upper lip.
You really should see if you might have Celiac ,systemic yeast or Lyme as they can prevent AP from working well.70% of people with chronic diseases of any kind have it and we have to stay far away from anything the has gluten from wheat,rye,barley and oats.Rice beer sure does not cut it on a hot summer day!!!!!

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I too am another success story with AP. After 6 months of AP, I have nearly complete resolution of symptoms of SD, which had affected my internal organs and about 40% of my skin including my face. My wrinkles have also returned! I found out that I have lyme disease and am on additional antibiotic and supplement therapy. I feel great! I have returned to all previous activities as my energy has returned.

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Is anyone taking minocycline and plaquenil? I was taking both for about 2 years and I was responding extremely well. Then, my rheumy took me off minocycline as he didn't want me to take both at the same time. Since switching back to only plaquenil, I am not doing as well. In fact, I am doing so much worse than before.
I felt so much better with minocycline and plaquenil. (Skin improved, esophagus improved, movement improved, and even pain and inflammation improved)
I have an appointment next week and would like to discuss adjustments to my medication.

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If you are considering AP, please read the book on scleroderma by Henry Scammell. It will answer all your questions; also the roadback foundation website. I have had SD for 40 years and have been on minocycline for 10. I wish I had discovered this tx earlier. Most of my symptoms have reversed.

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I will visit the roadback site, but just wondering, quickly, if anyone can explain how Lymes disease is diagnosed?? CM

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Hi Cassie;
Lyme is getting to epidemic proportions and even here in frozen Canada it is surviving our winters,something that did not happen a decade ago.This says something for global warming.Have you checked with the Yahoo lyme group and www.lymenet.org?
Most tests are absolutely useless as they do not test for the right bands.Use Igenex ,this is a test you order youself online.They send a kit,you bring it to your doctor for a blood draw and you Fed Ex back the sample.They send the info to your doctor. www.igenex.com If you need help contact Kim or Maz at the www.rbfbb.org (bulletin board) for help as they are the usual volunteers on duty and have Lyme also

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I just ordered this text---thanks so much. Looking forward to getting it.

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I'm new to this site and not sure how to read your journals....could you please advise?

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nancyn
that is encouarging to hear that you are doing so well after so long....were you diagnosed with diffuse? were you bad in the beginning? Just hoping for some hope..... also thanks for your response christine.....I am only 27 and hoping this disease does not make me look older...:( i know wrinkles are supposed to be a relief compared to the tight skin but I dont really want them this young.....has anyone heard anything about juvederm for the lips is that dangerous with scleroderma patients?

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oops sorry one more thing my gastro doctor claims I was tested for celiac.....says I do not have it.....how do you test for and get rid of systemic yeast?

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Stephy;
Did your doctor do a blood test or a fecal test? Most blood tests are about as useless as most Lyme tests.My doctor will only use Enterolab.This is an other test you do yourself (www.enterolab.com ) You order whichever test you want,I was broke so I just ordered the 99$ gluten sensitivity test.They send a kit,you send in a fecal sample,they culture it a few weeks and e-mail you the results. Most people with gluten intolorance are lactose intolorant also

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I don't get why doctors aren't doing these important tests and we have to do them ourself

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If these so called tests dont work that doc give then why are they giving them. I have to beleive to some point that they are pretty much accurate.

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