Is there anyone with scleroderma in remission?

[lanolin]

I am just beginning AP and desperate to hear some remission/ success stories. I was diagnosed with systemic sclerosis with diffuse scleroderma. I may have mild lung fibrosis and minimal skin thickening. Also, has there been anyone here with breast implants and scleroderma?

[richie]

Hi

There are many success stories of people using antibiotic and obtaining remission from scleroderma –I had a bad case and am now in total remission -takes awhile but its really the best road to go in my opinion —The Western Journal of Medicine cites a study of 72 people who had implants –38 got scleroderma —that should answer your question —me -I never had implants !!!!LOL
richie

[Lynne G.SD]

Hi Lanolin;
I also am in remission.Started AP 16.5 years ago.By year 2 I was about 80% normal.By year 4 I was my old self again.I had a rough time with herxing,the sweating,the itching as my skin lost it’s fibrosis but still had the breaking teeth and bone absorbtion in my jaw for the first 3 years.Now the only thing that bugs me is that I have absolutely nosub cutaneous fat and that has left my skin kind of wrinkly.There is now a theory that it is this sub cutaneous fat that feeds the collagen.I came across this info about 6 months ago but never saved it so now I can’t even find it.I know that it was on the Inspire site.the one thing I did not know for over a decade was that I also have Lyme and that made the SD even worse.
Hang in kid,you will eventually catch up with the rest of us.

[may8]

Richie & Lynne,

It is so encouraging to read your stories, there is hope for us who are just starting on the AP journey. Now I know so many of my symptoms are related to this horrid disease, I always thought it was part of aging. My R shoulder pain is at its worst, physio did not help, just started acupuncture. L eye showing signs of cataract. Raynaud’s active and just started Adalat
XL 20mg once daily.
I pray that they find a cure for this disease soon .

Minocycline HCL 200 mg daily
Imuran 100 mg daily
Adalat XL 20 mg daily
Prevacid 30 mg
Pilocarpine 5 mg
Probiotic, multi vit, vit c, omega 3, d3, b12

[richie]

Hi I still take adalat xl for Raynauds –I found it a big help –Good luck you will do well
Richie

[kater]

Hi Lanolin
I got my SD into remission in 3 years on AP. I also did Lyme treatment and Clindy IV. In the fall even my labs were normal though I am having a minor setback recently and stepped up my healing program again. I hear this is par for the course though and I know my labs will improve once again. I can’t say enough about AP–never have taken any of the things the rheumies recommend. Way too toxic for me but I know some choose this. AP is a slow route but effective for many even with advanced disease. I know reading it it sounds crazy taking antibiotics for so long but I have had know problems at all. Just important to take plenty of good probiotics well away from antibiotic dose, and I take lots of supplements, treatments to keep myself balanced. I think diet is important too–gluten is not good when there is an autoimmune issue, sugar is not good for anyone. No one diet plan is right for everyone but cutting out sugar and gluten I think benefits just about everyone. There are lots of testimonials about AP on the main website . I know it’s hard but try not to stress–I think that is what has caused my setback. Just too much happening so I am taking a break from work to regroup. Hang in.
cheers
kate

Systemic Scleroderma since 2010. Lyme and Myco P. AP and many other antibiotics and treatments since Nov. 2011. Presently mostly in remission other than fatigue.
Teva Minocycline 100mg a day. Dessicated tyroid, LDN 4.5, LDI, hawthorne, curcurmin, berberine,, caprylex, reishi mushroom, liver protect, zinc,, fish oils, magnesium, vit K2, d3, bcomp, E, C

[richie]

Hi Gluten is wheat rye oats and other –I do think if one is not sensitive to gluten -no reason to go gluten free –I think diet is very individual -my approach as well as the doctor up at Harvard felt diet is not a factor in these illnesses as long as the particular food agrees with a person –I.e. I cant handle strong tomato sauce yet I do fine on tomatoes so no tomato sauce —
richie

[Spiffy]

Oats do not naturally contain gluten. Look for the brands that are certified gluten free. Cross contamination can be a concern. Yes, I agree. Diet is very individual. I believe everyone would benefit from igg food testing.

DR4/DQ8 HLA, bio toxin illness
Flare fall of 2014...muscle aches, joint pains, fatigue, hair loss, rashes
Positive RA factor was 71 in January 2015 down to 28 as of September 2016
IGG food allergies wheat, egg, dairy
supplements: C and D, probiotics, milk thistle, Turmeric, cod liver oil, methyl b 12 & folate, digestive enzymes, Moducare, chlorella, berberine, LDN, monolaurin, Triphala, Patriot Greens
MTHFR compound heterozygous
Igenex IGM Lyme positive
Minocycline 100 BID MWF

[enzed]

@richie wrote:

Hi Gluten is wheat rye oats and other –I do think if one is not sensitive to gluten -no reason to go gluten free –I think diet is very individual -my approach as well as the doctor up at Harvard felt diet is not a factor in these illnesses as long as the particular food agrees with a person –I.e. I cant handle strong tomato sauce yet I do fine on tomatoes so no tomato sauce —
richie

I agree that diet is an individual thing and what suits one person, may not suit another.
I suspect its the same with supplements. If there’s no deficiency, what is the point?

[Author]

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