Home Forums General Discussion I'm Back :-) Aynur from Dubai

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  • #459133
    aynurrzepa
    Participant

    Dear Friends!

    I’ve been away for so long – sorry but you never leave my heart and thoughts! Just wanted to check in here, say hi and encourage all those new to the AP.

    It’s my 8th year on AP and 7 consecutive years of REVERSED ANA! With a very long standing but very moderate diffuse scleroderma without internal organ involvement, I started with just 100 mg twice daily. A year into AP and after ANA reversed to NEGATIVE, I’m on 100 mg once daily. I’ve started with a Canadian brand, blue-orange capsules (Lederle) but I’ve changed brands several times as per the pharmacy supplies and for the last 2-3 years I have been on tablets from the UK (Crescent), since capsules are no longer available. I’m doing great, the damage SD caused me is slowly but surely disappearing. And I’ve had SD for 37 years! First manifestation – Reynaud’s at the age of 3 (most likely after CMV virus 6 months prior and frequent tonsillitis) and full SD albeit without any internal organ involvement, by the age 11. My early years were painful and I spent some time in hospitals (rheumatic fever, tonsils removed, etc.). Then it all slowed and stabilised by age 18. I’m 40 now, mum of 2 beautiful, healthy kids. I’m very active – working, travelling, doing everything, walking/cycling almost daily 8 km…

    I was mainly unaware of my diagnosis till I had both my kids! My mum kept the secret from me… She always said, “You just have Reynaud’s…”. Although I often researched Reynaud’s and saw it often associated with SD, I was sure I had none of the terrifying condition and did not think much of that… till after I had my second kid and my finger ulcer would not heal for over 1 year – an absolute records even for me! I was curious as during my pregnancy with my number 1 I was tested ANA positive, so by then I already started thinking that I may have a bit more than just Reynaud’s. I did no investigation till after my son and the bad finger…

    I have to say after childhood, I did not really suffer much either – my main problem was my very dry skin, being underweight or just normal but really skinny and finger ulcers (plus changed face as I realise only now – after my face started going back to my natural normal). The reason for such favourable state? I think tetracycline mum gave me as a child for my frequent throat infections… πŸ™‚ And positive thinking… or rather not thinking about SD at all (as I did not know I had one!). So, after my prolonged finger episode, I finally got diagnosed and started the AP – April 2010. In one year, the ANA was sera-converted to negative and remains as such. My body is changing towards better constantly… I tolerate cold MUUUCH better and last X-mas I even learnt skiing and was totally fine skiing 4-5 hrs in a row on blue slopes πŸ™‚ My next challenge – red slopes πŸ™‚

    I get my prescriptions from Dr.S in Iowa’s office in the US and my meds from buylowdrugs.com in Canada. We are on our way out of the UAE/Dubai – in March 2020 we will be leaving Dubai for good, moving back to the UK where my husband is from. There, I will probably find an AP therapist, for my routine checks as well as my prescription. Or I may stay with Dr.S, not sure about this yet.

    So, this is the quick hi and to say that AP did wonders with me! I’m a medical miracle thanks to Dr. Brown and Roadback!

    Aynur

    Doctor’s full name removed as per RBF policy and guidelines. Thanks for your understanding. RBFV

    #459134
    Airen
    Participant

    Hi Aynur!

    So glad you stopped in to share your story. I have RA and too have done well on AP in just 1.5 years on this treatment. I love success stories. Even though I have read them all, I still go back and reread from time to time. So happy for you!!

    Diagnosed with RA in October 2014, pain started in February 2014
    Started AP in June 2015
    Taking daily: 32.5 mg WP thyroid 6 am, 100 mg mino 9 am, 16.25 mg WP thyroid 2 pm, B Complex for MTHFR mutation 3 pm, Multivitamin 3pm, 100 bil powdered probiotics 6 pm, 5-8,000 iu Vit D 6 pm, 100 mg mino 9 pm

    #459135
    aynurrzepa
    Participant

    Thanks so much, Airen! Glad for you, too )))

    #459136
    Maz
    Keymaster

    Aynur, welcome back and I second Airen’s grateful thanks about taking the time to let us know how well you’re doing. So many people get to remission and we never hear from them again until they hit a roadblock – maybe they’ve relapsed as their generic med got changed or they’ve been through a particularly stressful period or suffered from an infection of some kind that has tripped things off again. So, this is just great to hear you’re doing so well. In fact, any chance you could copy/paste your remission story into the Stories section of the main site? You can use the automated form to do this, which is pretty easy. Just click here, copy/paste and submit! πŸ™‚

    Tell Us Your Story

    YAY!

    #459143
    aynurrzepa
    Participant

    Hi, Maz! So glad to hear from you! Yes, I surely will post it soon.

    Have you got contacts of any UK AP therapists at all? I’d like to make contact with them, for our future move to the UK (south of England).

    Aynur

    #459144
    lynnie_sydney
    Participant

    Hi Aynur great to hear from you! So glad you are still doing so well and through various changes in mino type. Agree with Maz that your story would be invaluable and wont slip down and be missed once in the Stories section. You can pretty well just copy and paste what’s in your post. πŸ™‚

    Be well! Lynnie

    Palindromic RA 30 yrs (Chronic Lyme?)
    Mino 2003-2008 100mg MWF - can no longer tolerate any tetracyclines
    rotating abx protocol now. From Sep 2018 MWF - a.m. Augmentin Duo 440mg + 150mg Biaxsig (roxithromycin). p.m. Cefaclor (375mg) + Klacid 125mg + LDN 3mg + Annual Clindy IV's
    Diet: no gluten, dairy, sulphites, low salicylates
    Supps: 600mg N-AC BID, 1000mg Vit C, P5P 40mg, zinc picolinate 60mg, Lithium orotate 20mg, Magnesium Oil, Bio-identical hormones (DHEA + Prog + Estrog)

    #459145
    whaleharbor
    Keymaster

    Aynur! So nice to “meet” you and what a wonderful testimony to not only AP but the power of positive thinking. Thank you for sharing your story. You are an inspiration in many ways.

    Minocycline 100mg every other day with food...lots of food: Zydus brand. Celecoxib 200mg twice per day: Greenstone brand.

    #459148
    Maz
    Keymaster

    Yes, I surely will post it soon.

    Have you got contacts of any UK AP therapists at all? I’d like to make contact with them, for our future move to the UK (south of England).

    Aynur, your great story is now on the site, if you or others are interested in whether AP works for seropositive scleroderma!

    Aynur’s Seropositive, Longstanding Scleroderma AP Remission Story

    Aynur, I’ve also sent you the AP doc list for UK in an email reply to your Story submission. Do hope one of the docs there will work out for you. There are a few UKers here and Lemons is very kind to fill folks in on her experiences with and gathered info on these docs. If she doesn’t see this, am sure she wouldn’t mind if you PM her.

    #459191
    Lynne G.SD
    Participant

    Hi Aynur;
    So glad to see you are doing well.I am just fine also and running like a crazy lady so I don’t get here very often.In fact I am never on the computer for more than a few minutes a day.
    Big hugs,Lynne

    #459203
    aynurrzepa
    Participant

    Great to hear, Lynne! So glad for you ))) XX

    #459212
    sunny22
    Participant

    Aynur,
    I just want to thank you also for sharing your story. I am an SDer (I was with Dr. S. as well) and it was great to read your story! I am so happy to read that you are doing well!
    Sunny

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