Home Forums General Discussion HI Friends; I am dealing with scleroderma past 13 years a newbie to minocycline

This topic contains 8 replies, has 5 voices, and was last updated by  kater 4 months, 2 weeks ago.

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  • #460651
    MarlaCL
    Participant

    I am trying to also incorporate a gluten dairy and sugar free diet since June 20
    Its a slow process and I am optimistic that I will see some positive changes soon.
    My Dr is going very slow with me as I am allergic to doxy and other antibiotics.
    Tomorrow I begin 100 mg up from 50 mg I will take it every other day.
    Read today about Vitamin C and hyper pigmentation .
    What is the recombined dose to take just in case.
    I am also taking 1500 mg of cellcept to stabilize lung fibrosis, which I do not find helps me any!!
    Thanks of listening and ever grateful to have found the Roadback Foundation!!!
    God Bless us all!!
    Marla

    #460652
    Spiffy1
    Participant

    I have to use compounded minocyclene because I am allergic to the fillers in the generics. Just a thought for you.

    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, minoMWF

    #460653
    Pinkmoth
    Participant

    Hi Marla and welcome
    Cutting gluten dairy and sugar is very hard at first! I hope some of the cuts lessen your symptoms.

    I wish you great success on mino. I am about one month into AP (for early disease) and am doing well. I had very early symptoms that seem to be reversing.

    I have chosen to take vit C, for its general health benefits, for mino hyperpigmentation, and im also taking n-ac and I read vitamin c should be taken with that. But there seems to be some controversy about whether or not people with SD should take vitamin C that you can read up on this forum on others.

    #460654
    MarlaCL
    Participant

    Hi
    Happy to have read your responses tonight!! Great info
    (sorry re above typos)
    Thank you Pinkmoth and Spiffy !!

    #460655
    Lynne G.SD
    Participant

    Hi Marla;
    Welcome to the gang.I start my 19th year of AP in Nov.The first couple years were rough and I only learned around the 12th year that I had Lyme also.It was a fun time but now I am my old self and burning the candle at both ends which really is not good if you have SD.If I am lucky I get 6 hours of sleep but usually it’s less and every so often the dang disease makes my hands start to burn.When that happens I have to go back to 200mg mino or doxy a day for a couple days and that resets be perfectly.Otherwise I only take 100mg doxy or mino every day or second day.Once one is truly in remission one can fool around with the dosage until one can figure out what works best.I am the type of person that never takes more of anything than I absolutely have to.
    Don’t forget your probiotics,I take 100billion a day.

    #460656
    MarlaCL
    Participant

    Lynne:
    Thanks for your detailed positive email!!! Congrats on remission!!!
    What were your worst symptoms over the years ?
    Can you tell me exactly where and which probiotics you take daily ?
    Thank you!!!

    #460754
    MarlaCL
    Participant

    Update Sept 24/2017
    Scleroderma since 2004
    Past 5 years pulmonary fibrosis set in with a decrease of 10% annually. Tried 16 months cyclophosphamide with zero success.
    Started AP July 12 with only 50 mg minocycline 3 x a week
    Increased mino 2 weeks ago to 100 mg 4x a week( once daily ) I’m allergic to many antibiotics do my Dr prefers I go long and slow. This week I had my PFT. My pulmonary Dr had good news to tell me. My FVC went up from 42% to 47% compared to March 30 2017. I have literally just started AP in July on a baby dose. I was also told by my Dr I had to go gluten , sugar and dairy free! I have been very vigilant about my stationary bike at home every other day. Today I reached a milestone for me. I did 40 min and 8.0 km which is almost 5 miles. I am so grateful to see slight improvements and am feeling well and optimistic to have found RoadBack and a couple of special Mentors especially Maz !! She is simply an amazing caring selfless person.
    So I hope to update again soon with more good news !!
    I feel very comfortable with this dose of mino. Taking probiotics as well 2-3 x a day. Terrified to eat the wrong foods now!!!!
    Blessings to all
    Marla

    #460755
    MarlaCL
    Participant

    Ps. I am also on 1500 mg cellcept since March 2016
    Apparently the Dr said I am now back to where I was with my lungs in Oct 2015!!

    #460827
    kater
    Participant

    Great news Maria! Keep going! I have been on mino 6 years have scleroderma, Lyme and myco P. I have done many other antibiotics also but now I am in remission and on 100 mg of mino daily. I keep to 1000mg of Ester c with K2 for pigmentation but don’t do high dose C. NAC or an amazing product called Liver Protect by Xymogen is good for lungs and liver. Keep up the great progress
    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

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