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Has anyone had any luck with herbs reducing skin fibrosis? I’ve seen references to these herbs working for it.
Stephania
CordyceptsMaybe Serrapeptase or Nattokinase (sp?)
Originally +Ana May 2018 (now negative Jan 2019), scleroderma or uctd, Morphea (now mostly gone!), Myositis ( better now) Probable Lyme w/coinfections, had Bartonella marks that disappeared,
Mild reflux, mostly gone,mild ild, skin hardening (continued softening and some parts normal again) Impaired liver function, now normal after 1 year and CK, LDH all normal again, 14 mo after starting ap.Minocin m-f 2x, antibiotic rotation, ldn 4.5, cellcept 3000, probiotics, Monolaurens, Olive leaf extract, fish
I’m not positive on the myositis diagnosis. It might just be part of scleroderma. I refused a muscle biopsy, but my labs showed muscle damage and it was written on my chart. Some numbers were insanely high for ck, adolase and another I can’t remember. Yes, I’m doing better and better everyday! My legs would get shakey and I’d feel weak. I could barely walk a block at one point. Now I can walk 4-5 times that. I still have a ways to go, but its happening! Yes, I believe its the antibiotics. I’m at 11 months now. My low point was last fall and for muscle weakness, I remember feeling weak just going up a couple flights of stairs in Dec. Then it all started to turn around. It takes time. I see positive changes every week and I feel so grateful!
Originally +Ana May 2018 (now negative Jan 2019), scleroderma or uctd, Morphea (now mostly gone!), Myositis ( better now) Probable Lyme w/coinfections, had Bartonella marks that disappeared,
Mild reflux, mostly gone,mild ild, skin hardening (continued softening and some parts normal again) Impaired liver function, now normal after 1 year and CK, LDH all normal again, 14 mo after starting ap.Minocin m-f 2x, antibiotic rotation, ldn 4.5, cellcept 3000, probiotics, Monolaurens, Olive leaf extract, fish
I have similar symptoms in regards to myositis. My ck levels are high with all other testing being neg. I even had a biopsy which fail to show muscle inflammation. However, doxy is preventing any muscle loss. No doc can tell me why and yes i have seen by John Hopkins myositis center and they couldn’t tell me what’s going on.
Do you know your ck #?
I didn’t do the biopsy because I read it wasn’t useful unless it was in just the right spot. I was also concerned with my skin thicking and ability to heal from it.
My CK at its highest was 3110 and now its 743. Should be 30-200, but HUGE improvement!
My LDH was 1316 at its worst and is now 234. Should be 94-172. I’m getting there!
My Assay of Aldolase was 56 at its highest and now is 12. <7.7 is best.
My liver labs are now totally in normal range as well.
I’m also on Cellcept/mycophenalate in addition to AP. At some point, I want to change to strictly ap, but my symptoms came on so strong originally, I didn’t feel like I could wait and needed to take multiple approaches. Last summer, I seriously thought I’d be in a wheelchair by the end of the year… No one told me that, but considering how fast things were progressing and how weak I was I figured it was a real possibility. I am to grateful to be getting better!
Originally +Ana May 2018 (now negative Jan 2019), scleroderma or uctd, Morphea (now mostly gone!), Myositis ( better now) Probable Lyme w/coinfections, had Bartonella marks that disappeared,
Mild reflux, mostly gone,mild ild, skin hardening (continued softening and some parts normal again) Impaired liver function, now normal after 1 year and CK, LDH all normal again, 14 mo after starting ap.Minocin m-f 2x, antibiotic rotation, ldn 4.5, cellcept 3000, probiotics, Monolaurens, Olive leaf extract, fish
Fyi, my Ana went NEGATIVE in January from being high positive the previous year when diagnosed. I read this happens with AP, but it was also the Elise test which I heard isn’t as accurate. Who knows? I only base so much on testing. I care more about how I feel. I know I’m headed into remission and will someday be writing a success story too. 🙂
Originally +Ana May 2018 (now negative Jan 2019), scleroderma or uctd, Morphea (now mostly gone!), Myositis ( better now) Probable Lyme w/coinfections, had Bartonella marks that disappeared,
Mild reflux, mostly gone,mild ild, skin hardening (continued softening and some parts normal again) Impaired liver function, now normal after 1 year and CK, LDH all normal again, 14 mo after starting ap.Minocin m-f 2x, antibiotic rotation, ldn 4.5, cellcept 3000, probiotics, Monolaurens, Olive leaf extract, fish
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