Home Forums General Discussion Turning a corner? Tell me if this sounds familiar?

This topic contains 6 replies, has 6 voices, and was last updated by  Lynne G.SD 8 months, 3 weeks ago.

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  • #460295
    Kat0605
    Participant

    I feel like I may be turning a corner. I’ve been treating my underlying infection for 4 months no with Azithromycin, but I’ve now been 3 weeks on minocycline. Even though I’ve been dealing with some distressing muscle weakness and other sclero symptoms, I have this overwhelming sense of well-being and optimism. My personality changed after I got sick. I let my husband make so many decisions-both big (our daughter’s name) and small (how we organized our new house). All of a sudden I have opinions again. I hadn’t been able to watch much TV-got no enjoyment out of it. All of a sudden my interest in shows are back. I’m making plans with friends for the first time. I’m not dreading going back to work in September.

    My body literally feels like I’ve had a really bad cold in my body and it has been down for the count and now I’m functioning again with a residual runny nose and bad cough. Except instead of the cold symptoms, I have sclero symptoms.

    Does any of this sound familiar to anyone?

    Symptoms started in 9/16 after 2 miscarriages, diagnosed with Lyme 4/17, Daughter born 6/17 (not breastfeeding). ANA negative by IFA as of 8/17, positive by ELISA with positive Anti-DSDNA antibodies the same month (false positive?). Symptoms that have come and gone include sicca and skin tightening and telangiactiasia. Currently dealing with migraines, arthralgia, morning stiffness, neuropathy, slight swelling, slightly elevated liver enzymes, and bubbly urine. Current protocol: minocycline 100 mg QID, azi

    #460296
    MINOCINMAN
    Participant

    I was diagnosed with Diffuse SD 8 yrs ago, but clear symptoms for 9 yrs looking back. Doing very well. 18 Mos was a challenge. I reach out to you to offer hope that you will be one of many like me that go on to have productive lives.
    Daughter 8 yrs old.
    Do not think all is lost if get worse before better. Good luck.

    #460299
    richie
    Participant

    Hi The very first thing to improve years ago was the fatigue starting to lift —it took about 4 months or so —-improvements are never dramatic but rather extremely gradual -Sounds encouraging to me

    #460300
    kater
    Participant

    This sounds Like great news- especially if you feel on the mend after giving birth and caring for a newborn and a new house! I am in sclero remission (lyme and myco p induced in my opinion) though it has taken a long time. I still have fatigue but I can’t complain.
    Keep up the great work!
    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

    #460319
    Maz
    Keymaster

    Kater and Minocinman, long time no see, but very happy you’re both in sustained remission!

    RBF is in need of more SD remission stories!!! We’ve served thousands of Scleroderma patients over the past 3 decades since Dr. Brown died and we know there are several hundred SDers on another support group who got initial help from RBF to find AP docs, but who didn’t join us here so we have lost track of them. It’s so sad to see a measly 23 SD stories on site so you can help RBF by adding yours to pay it forward to newcomers! Thanks so much and just a few lines or paragraphs will do. These stories are so inspiring to scared SD newbies and you can make a real difference in their lives. The personal info you provide is kept confidential and only first name, country, year of story submission, and disease type show on site. If you really don’t want your first name to show, a pseudonym can be used instead.

    Tell Us Your Story

    Severe, swift onset RA as a result of Lyme disease
    Current Meds: Biaxin (500mg BID), Tetracycline (500mg BID), Tirosint (88mcg), Liothyronine (10 mcg), Compounded Liposomal Artemisinin, LDN (3mg), Topical Progesterone,
    Current Supps: Curcumin, Bovine Colostrum, ALA. NAC, Milk Thistle, Super Liquid Folate/B12/B-Complex, Probiotics, Vit D3
    Supportive Measures: IV Myer's Cocktails, IV Glutathione, FIR Sauna, Gluten-free diet, Gym.

    #460322
    Kat0605
    Participant

    Thank you everyone! I still feel pretty good today. I’ve been able to walk 2 miles every day. I never had terrible fatigue, but I just felt a sense of malaise which went first, the skin tightened after I gave birth, but quickly loosened after I added mino. My symptoms are no longer controlling my life!

    I agree with Maz- please please please share your stories SD folk! I lived on those stories during my pregnancy. My symptoms were never horrible and I am just at the very beginning of my disease, but I was scared to death. Reading success stories has kept me going!

    Symptoms started in 9/16 after 2 miscarriages, diagnosed with Lyme 4/17, Daughter born 6/17 (not breastfeeding). ANA negative by IFA as of 8/17, positive by ELISA with positive Anti-DSDNA antibodies the same month (false positive?). Symptoms that have come and gone include sicca and skin tightening and telangiactiasia. Currently dealing with migraines, arthralgia, morning stiffness, neuropathy, slight swelling, slightly elevated liver enzymes, and bubbly urine. Current protocol: minocycline 100 mg QID, azi

    #460324
    Lynne G.SD
    Participant

    Hi Kate;
    I still do not understand this new board.I wanted to send you a message as I know someone in the Vancouver area whose wife has SD.He was supposed to join this board but don’t know if he has done so yer.Is there a chance that you could have a chat with either of them.He agreed to giving his e-mail if I could find you.My mail is lynneandsantos@citenet.net

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