Aynur’s Update

[aynurrzepa]

So, I found today from Dr. Sinnot that it’s possible to have ANA negative (yipee!) and Ant Scl-70 positive as the latter is part of me , my immunity now (and may not change) whereas the former is the indicator if the disease severety!

I had another round of tests again and I got my results today and again. My ANA STILL is negative although Anti Scl 70 is still positve. As I said, I spoke to Dr. Sinnot just now and he explained how to read into these results. Basically, it’s a very good sign my ANA kept negative for 6 months and Anit Scl 70 antibodies have no significant value for the purpose of treatment and evaluation and are part of me so may not change, whereas ANA is an indicator of inflamation from SD and it being negative is all what matters plus how I feel generally. And I feel very good. Incfact, in 1year since I started AP, I had nosickness of any sort. I have to mentionthat I also take lots of various supplements as recommneded by Dr. Mercola. I also take systemic enzymes to reduce my fibrinogen levels which is responsible for sticky blood and poor circulation in rheumatoid patients. The sytemic emzymes help spften tissues all over and reduce fibrinogen, in my case from 460 to 415 with normal less than 350. By increasing my dose, I hope to achieve further reduction which should improve my blood circulation to lessen the Raunaud’s attacks. Another drug I’m takign is LDN – not sure how it helps but I will continue for a while more (it must be helping though). So all this meds have kept me in perfect health condition. I also eat healthy, avoiding processed foods, minimal starch, carbs and gluten, organic food, veggies (raw and steamed) etc. Still no time for exercise, though

So, having had this disease for over 30 years, I was so lucky not to develop any internal organ involvement. Only my muscles (over body) were affected by becoming harder and tighter, ligaments harder.My skin overall tighter but not restricting my movements in any way and my hands affected by Raynauds and my face affected with changed features – thinner lips, nose, rounder eyes, not able to crease my forehead (OK to frown though).

Since I had my second son (by to c-section as with my DD, both only due to limited tissue preventing normal delivery), I noticed my right hand started to get worse i.e. the fingertip pitting scars inflamed on 2 fingers and wouldn’t heal for 2+ years, my right thumb got stiffer, too. So I started the AP. I have to say 1 year into my treatment, all my ulcers are under control now, no new inflamations apart from my right big toe tip becoming slighly more sensitive (but not really gettign worse though). My skin is much softer now (possibly combinaiton of Minocin with systemic enzymed played a great role here). My muscles are much softer too. My thumb is not getting worse but still harder to bend than the other fingers and I still get Raynauds’ and Dr. Sinnot is saying they may continue hapenning maybe with less frequency but due to the long histroy of my disease, the damage may have been irreversible. I shoudl take care not to get it worse and continue taking mynocycline all my life.

So this is from my for now I hope this are encouraging news for all APers!

[dianne-sunshinecoast]

congratulations! 🙂 🙂 , so happy for you !. all the best to you and your family 🙂 kind regards ..di.

[Krys]

Hi Aynur,
Lovely to see you again. You have been missed!
Great news that you keep progressing. I’m slightly disappointed that you will have to be on Minocycline for the rest of your life. I was hoping that with your SD being fairly light, albeit long lasting, you would totally resolve it and be given a clean bill of health. But your progress, esp. after such a long case of SD, is beautifully impressive! Thank you for sharing!
Warm wishes, Krys

[Parisa]

Aynur,

You’ve made great progress from a year ago! Thank you for sharing. It’s good for other SD patients who have been sick for a long time to see that recovery can still be made.

[aynurrzepa]

Thank you for your kind words. I know it’s a big thing to get ANA negative and to have such improvement as softening all over. My main problem – Raynaud’s and fingertip ulcers or rather pitting scars as none of them are inflamed at the moment still remain. I have pitting scars at the tips of each finger, knucles, ancle bones, both big toes, both elbows tips where they rub the most and heels). I am trying to buy an infrared sauna as I still cannot find time for exercise with 2 small kids. Seems it’s the last thing i haven’t yet done to tell I’ve tried everything possible. Also, I’m thinking of finding a biofeedback specialist, to learn how to manage Raynaud’s attacks. That’s the other thing still do try.

Helathwise and general wellbeing wise the improvement is that 1 – I didn’t get any colds this past year whch means I have been able to signigicantly boost my immunity and 2 – I became pain free 3 months into AP (ulcers got better) which of course siginificanlty improved my quality of life. I can play & restle with my kids without being scared of getting hurt from a slightest touch or bump.

I still hope to have my piting scars completely go and my facial feature to soften a bit. Hopefully I can also get rid of the olive red glow all over my body, which makes me look like not just constantly tanned (it’s OK) but somwehat flushed…

So, still more to go but I’m very optimistic and hope the others see hope from my story as well – so many years of SD and still you can get a good progress. I look forward to posting here about achiving all above soon.

As for me not beeing here for a long time – thanks so much Krys for your kind works, it;s relaly touching. My thoghts are always with you but my kids, their extra cirriculum activities, moving home and some projects at work have kept me quite busy. I shoud have a bit more time over the summer months.

[hopefulmama]

Aynurr,

So happy to hear this wonderful news! You are always in my prayers and I am so relieved and delighted to know that the reason you have not been posting lately is that you are busy living! Best wishes to you always with your two kids, I know how that goes… and thank you so much for sharing your inspiring update.

Warmly,
A

[mschmidt]

Aynur,

I’m so happy to hear that you are doing better, after only a year on AP. I saw significant reversal in the first 6-7 months, and big improvements after about a year. Next month is my last clindy iv, after 2 1/2 years of monthly iv’s. I’m down to 5 days of twice daily Minocin doses, as opposed to 7 days, and feel great. From my experience, I continue to see small improvements as time goes on, and the only trace of SD is very slight contractures of my fingers, with slightly tighter skin than the rest of me around my knuckels/fingertips. My skin tightening was extensive, and is no longer existent, other than my fingers. (which no one but me, or my family notices) My hope for you is that you continue to see more improvements as time goes on. From what others have said to me, the hands and face are the last areas to really come back. I remember not being able to wrinkle my forehead at all, and my dimples disappeared. Well, it’s all back, and I’m happy to see it! Keep up the good work–the combination of everything you’re doing to take care of yourself seems to be helping your body heal. And, don’t worry about the exercise component of everything right now–I’m sure you’re getting plenty of exercise taking care of 2 little ones! 😀

Thanks for posting your great news.

Maria

[aynurrzepa]

Thanks!

I wish you all better health, too!

[Eva Holloway]

Aynur,
just finishing up ready a lot of my e-mails and I came across your stating that you are doing lots better. I am so glad, keep it up.
Eva 🙂

Eva Holloway

[lynnie_sydney]

Aynur – I am also catching up on some posts from a week ago (I was away). It’s lovely to hear from you and with such good news. Thank you so much for posting your update. It doesnt faze me at all that Dr S has said to stay on mino indefinitely. Richie has been on mino daily now for 12 years (and is in remission), teenagers take it longterm for acne, Maz often states that she talks with patients who have been on it for decades with no ill effect – and this study that Maz posted recently supports the Dr Brown position that longterm use is not associated with bacterial resistance.
viewtopic.php?f=1&t=6051
I wish you great good health and continued improvements ongoing. Lynnie

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)

[aynurrzepa]

Hello, Everybody!

I’m back 🙂 Sorry for not posting for SOOOOO long 🙁 But I always had you in my mind! I’m back to say that I’m very well! I enjoy life, busy with work, kids. I even completed an Executive MBA and earned my second master’s degree last year. I change jobs, in fact from big corporate world of Emirates airline I went into entrepreneurship and I currently o consultancy and transport animals, mainly pets, globally. I travel actively and keep myself very busy in general all the time.

On the SD front – I’m fine, too! My ANA is still negative 🙂 my body has changed completely – I’m loving it! I’m curvy and soft as a woman should be 🙂 My face and hands are still not totally OK and I don’t think ever will go back to how it should have been would I not have SD. But hey, that’s not so important. But I don’t need to moisturise my face often anymore. My hands are well enough to do washing up without thinking too much about it and even forget about my moisturising cream sometimes. When I’m not lazy and not travelling I do gym and my gym instructors are saying I’m very fit. They say I could run a marathon… Maybe but I’m too lazy to try! I keep checking up every year and all is fine. The cardiologist is amazed how my heart has no traces of rheumatic fever I had when I was 7-9 years old and she told me to continue doing what I’m doing. She is quite accepting of the AP and says how could she not be if she sees my success. I generally do not eat gluten or even starches but now and then I allow myself some treats, especially when I go back to Azerbaijan – I cannot resist the Azeri bread and pastries! But, I still eat a little of it even on holidays. My normal diet is eating between midday and 7 pm (2 or 3 times). It’s called intermittent fasting. I eat organic. Lots of salads. Meat, chicken, little fish. Lentils and legumes. I use a lot of ghee and eat coconut butter when I remember about it. New thing I started is bicarbonate of soda twice a day. This prevents yeast overgrowth which is believed to be the reason of all cancers. I first add little boiling water to 1/4 teaspoon soda then fill the cup up with cold water and have it on empty stomach in the morning and just before bed. I also drink organic apple cider vinegar diluted in a glass of water first thing in the morning (before my Mino, 100 mg). I’ve never had thrush or any other yeast infections all these years as I also use potent probiotics regularly. I take my vitamins, including antioxidants of all types and vit D3. I have very high D3 level. I don’t get sick and even if I do, very very mildly and recover fast (sometimes all I get is a headache for one day – that’s my cold!). Despite high consumption of ghee, butter, coconut oil and other animal fats, I have normal triglycerides and although high total cholesterol, better than ideal cholesterol ratios! All this is my life plan I execute everyday in addition to positive thinking, persistency and self-discipline. I try to teach my kids the same and explain them about eating and health. They are learning well and are gluten free (except little exceptions on holidays and parties) and avoid excessive sweets etc. My hubby is coming along as well. We walk together 4 or 8 km each day, cycle when possible and walk to places where possible.

So, this is my little update and hello to all my fellow AP-ers! I would love to hear from you and answer any questions, should you have any!

Love,

Aynur

[dianne-sunshinecoast]

Hi Aynur,
So pleased to hear you are doing so well, all the best .
I too eat lots of coconut oil & have normal tri & high Cholestrol.
My doctor wants me to take Statins , however I wont take them.
I am wondering what your doctor says about the high cholesterol?
Many Thanks
Di

[lynnie_sydney]

Aynur
It’s lovely to hear from you – and with such a wonderful update. So pleased life is so good for you and that you are enjoying such good health 😀 😀 😀

Would you consider putting this update into a testimonial for us? It would give such hope to other SD’ers.

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)

[Lynne G.SD]

Hi Aynur;
So nice to hear from you.My,how time flies,it seems like only yesterday that you joined Roadback

Diane,you should read this;
http://articles.mercola.com/sites/articles/archive/2015/01/12/7-factors-cholesterol-levels.aspx?e_cid=20150112Z1_DNL_BuyerB_art_1&utm_source=dnl&utm_medium=email&utm_content=art1&utm_campaign=20150112Z1-BuyerB&et_cid=DM66627&et_rid=802314088

[dianne-sunshinecoast]

Dear Lynn,
Thank you so much for the interesting Mercola article.
I appreciated it very much.
Regards
Di

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