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If anyone can give me advice or comments…I'm 34 years old and have diffuse scleroderma and meeting with my rheumatologist tomorrow to begin the AP therapy and Im excited, scared, nervous, etc. If anyone has any advice please comment.
Hi Rebecca,
Wishing you all the very best for your doctors appt tomorrow! It is exciting, because this first appt marks the start of your road back to health and healing on AP. 😀
Although you may already have seen this Women's Day article here on the BB, I'll repost it to inspire and bring you hope. Perhaps your rheumy would enjoy reading it, too?
http://www.womansday.com/health/12875/i-didnt-recognize-myself.html
And I join Lisa in sending support and love…oh, and don't forget to start taking your probiotics when you begin your antibiotics!
Peace, Maz
Hi,
Sorry you have the diagnosis, but welcome to the board. My hubby has SD was diagnosed Aug 06. Began AP Nov 06 and has done wonderfully. Be patient, be aware that it may get worse before it gets better, but keep the faith. Good Luck to you!
Hi and I join in the good wishes for the start of your journey. Do remember that AP is not a quick fix, rather a long road (sometimes) to wellness and that improvements can be, as John McDonald so aptly says “glacial”. Plus the 'worse before better' part is so often true and that's from the abx hitting its target and from cell die-off. Read as much as you can (on this site and in the book) to inform yourself about what to expect and do. And keep posting! Lynnie
Be well! Lynnie
Palindromic RA 30 yrs (Chronic Lyme?)
Mino 2003-2008 100mg MWF - can no longer tolerate any tetracyclines
rotating abx protocol now. From Sep 2018 MWF - a.m. Augmentin Duo 440mg + 150mg Biaxsig (roxithromycin). p.m. Cefaclor (375mg) + Klacid 125mg + LDN 3mg + Annual Clindy IV's
Diet: no gluten, dairy, sulphites, low salicylates
Supps: 600mg N-AC BID, 1000mg Vit C, P5P 40mg, zinc picolinate 60mg, Lithium orotate 20mg, Magnesium Oil, Bio-identical hormones (DHEA + Prog + Estrog)Thank you all for this support ..I really do need it, Ive had scleroderma for almost 2 years and I've tried to be strong for so long that its really nice to have all of your support and love. thank you all very much.
Hi
No real advice but just know you are taking the first real step toward recovery –it took a few years for me but I am completely better from a mean case of diffuse scleroderma using antibiotic –any questions you may have –just ask on the board –lots of folks around here have been SUCCESSFUL in dealing with diffuse scleroderma and are very willing to share
Richie
Thank you Richie for the response…considering you had diffuse sclero and say your completely better gives me great hope and Im glad to hear you are well. thank you
Hi Beccie;
I want to tell you that after a few years I am TOTALLY normal and unless you look at my finger nails,you would never know that I have SD.I put in 16-18 hour days and still have some enrgy at the end.Not too bad for an old bag of 62.Every now and then I can see the SD trying to get me again but I just take an extra mino capsule and the hand stiffness goes away.I must admit it was a long road,high doses of antibiotics did not work for me and I was very dismayed to see Ritchie doing well when I did not.After changing diet and taking only 3 antibiotics a week I rapidly gor better.Systemic yeast is the only problem now. Lynne G.Hi Rebecca,
Welcome and good luck with your appointment. I also have Diffuse SD and was diagnosed and found this site early on. Mine was not as involved as Richie's, but was spreading like wildfire. AP got me in a pretty good state of remission after a couple of years. Seems everyone presents differently and responds a little differently to treatment, so it is really up to you to lead your doctor. Usually the AP docs are more open to patient involvement. Most SDers daily dose (200mg Mino), but I did better pulse dosing (200mg MWF) so you'll have figure out what works best for you. Just remember this is an exercise in patience, but so worth it!
All the best to you……kim
Hi Rebecca;
Welcome to the sclero. gang! As Richie said you have already made the first best move you could make by choosing AP. Also said, it's not a quick fix but it could save your life in the long run. It will also give you a better quality of life on the way to remission. Be prepared to play with the dosage, frequency and even the type of antibiotic. Someday an antibiotic may be all you take to remain well, imagine that and hold onto that while getting there. You will find lots of support and knowledge on this board so don't forget we're hear for you and each other. Take care and best of luck.
Hope always,
Steph
hello lynn, how long have you had sd, and what were your symptoms. what probiotics are you taking. so you lowered your dose and got better. how do you dose your minocin. and do you do iv's.
Tish,
One of my doctors who treated my C. Diff while I was in the hospital told me to take “Florastor” probiotic. He said this is the best one. We ordered it through CVS. You could check it online at http://www.florastor.com It's expensive. We paid $50 for 50 capsules.
What I am taking now is Acidophilus probiotic gold with extra strength made with bioflora. I got it from CVS.
If you hear anything better, let me know.
Hi Tish;
I have had diagnosed SD for 9 years.Looking back I can see that the cause was likely the Celiac disease I did not know I had.That caused systemic yeast and leaky gut that allowed the micoplasma to invade the gut and cause the SD.Most of us have celiac or celiac syndrome so if you have not been tested do so .Blood tests are not very good but stool tests are very reliable and only a biopsy is better My doctor had me take the Enterolab test for gluten so you don't need a doctor to do it.Just go to http://www.enterolab.com order the test you want,send in a stool sample and they e-mail the results.I would never have gotten better if I had not addressed the causes and that took about 18 months to clear the gluten.Doctor rotated mino,zith and clindamycin.I had the latter as I.V. and found that they were no better than the oral that I had taken previously.Over the years I have gone off mino and been put on a number of others as the doctor feels that it does stop working after a while.A year or so later she puts me back on it and rotates the others.She had been extremely sick herself and knows exactly what we are facing.The probiotic I take is made by New Roots Herbal and ishas a double enteric coating .Stomack acid will destroy 90% of the probiotics so make sure you get a coated one or you will just be paying plenty for nothing.Gotta run,hubby just said Pretty Tail is at the door waiting for supper.By the way this little skunk has the most beautiful tail in the world.Instead of draging it behind him ,he always has it standing straight up,the first 6or 7 centimeters are white,then he has about an other 7 cm of black and at the tip he has an other 8-9 cm of white.It looks like a big soccer ball attached to his tush.The poor things only came out of hibernation 3 weeks ago and there are no grubs available.Poor babies are starved.
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