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Also, Lynne, I tried the enzymes and they really help. A couple times reflux started to kick up, I took the enzymes and it away. Thanks for the recommendations.
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
ACK! The name of the company is GNC.I can now digest rocks and all the food I could not touch are no problem anymore.
Oh Lynne! Your words are a soothing balm to my heart. I kept reading on the internet and on this site to try and find someone that one, had Scleroderma but still found a product that helped the GERD and two, a person (on this site) that used AP and resolved or greatly improved the Acid Reflux. I will go to GNC today to purchase the enzymes you mentioned. Our daughter has very little skin involvement (recently developed a little patch of hard skin on both hands at the middle knuckle) and so it’s easy to think her Scleroderma isn’t as bad because no other skin is involved but I worry very much about the periods she has when food gets stuck or when she has horrible esophageal spasms (also called nutcracker spasms). They are so painful for her and it makes me worry about what we can’t see. I say she has no other skin involvement but I did notice over the last 6 months or so that she has very slight discoloration on the lower part of her legs. Faint little white circles. She hasn’t noticed yet they are so light but I can see them when she is on her feet a while. Her legs are pink and the little white circles of different sizes are noticeable. That seems to me to be more of a morphea symptom but from what I’ve seen this disease can be a mixed version of your own. Thanks again for the GNC digestive enzymes suggestion and just sharing your positive results with AP and Acid Reflux.
Thank you for the suggestion Lucky20! I have read and she has done a lot of diets but I have not tried the Plant Paradox. Anything is worth a try!
For me, scleroderma started out as nightime bilateral hand swelling off and on, then progressing to all day after about 9 months. Skin hardening started after a year and happened in a matter of 2 months.
For morphea, the dark red-brown spots appeared large and spread quick over a few months with some hardness fairly quickly. Not as hard as the scleroderma. It felt like I was wearing light support hose, but not real uncomfortable.
By the time my hands went hard, the swelling in my feet had gotten bad (popping out of my shoes)and my face was getting harder and harder. At one point my mouth only opened 1 finger wide. By the way, 1/2 the hardening is gone already,my mouth fully opens, my face is 95% back to normal, the morphea is mostly gone and my feet are now 100% normal and about 1 1/2 sizes down from what they were! I’m still waiting on my hand and forearms, but I see slow continued improvements.
I’m telling you all this to show you one path of how the disease can manifest and be reversed. I might have happened different for others, but this gives you some idea what to look for in your daughter. After a year of progressive hand swelling, it was obvious something was really wrong and then things progressed fast.
Hang in there. Hopefully you got started soon enough and you’ve halted the progression. It sounds like you’ve taken huge steps to help her and should hopefully be able to avoid the things I’ve had to deal with.
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
Thank you for sharing all of those details Luck20. You can just imagine what it means to me to have someone’s personal insight and the details of their journey as I wade through all I read on the internet. I know everyone will have a different journey because this disease can take so many turns and has so many possible symptoms but just knowing that AP can help and sometimes even put the disease into remission is golden!
Can she or does she mind swallowing pills?
Flare fall of 2014...muscle aches, joint pains, fatigue, hair loss, rashes, etc.
RA Factor 71 in Jan 2015 down to 25 as of September 2017
DR4/DQ8 HLA...biotoxin illness
IGG food allergy to wheat, egg, and dairy...probably all grains
Vit. C&D, probiotics, milk thistle, turmeric, fish oil, methyl b 12, methyl folate, digestive enzymes, Candisol, Ubiquinol, berberine, chlorella, Moducare, LDN, monolaurin, Triphala, Patriot Greens, Paractin
MTHFR compound heterozygous
Igenex IGM positive Lyme, minoMWFMountains,
Have you tried serrepeptaise, an enzyme that’s good at breaking down scar tissue? Might be helpful for her GERD symptoms until her doc gets her antibiotics figured out.
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