Aynur, 30 years of SD, committed to remitting and reversing the decease

[aynurrzepa]

Hi,

So, here is my time to post here. Sorry for the long story but with 30 years of SD I have a lot to share with! I hope some find this info useful, too.

At age 3 I got strep for the first time. I was born very healthy, chubby but flatly refused milk and food from age 6 months. From then on, as per my Mum, I got thinner and sicklier. When I was 3.5 years old, my parents started to notice I turn blue in the mid of the summer when we are on the beach. They thought it was because I was very thin and a sickly child. However, the condition persisted and by age 6 my mum took me to a Rheumatic Centre – the number one in the USSR then, in Moscow (I am from former USSR, now Azerbaijan, Baku). They told her I have Raynaud?s, advised to use olive oil wraps and massages, hot/cold water contrast massages and give me sesame seeds. Being very stubborn child, I was not cooperating with my parents, so they gave up trying all these things with me over many tears and tantrums.

I was skinny as skinny can be. Got medical records reflecting “initial stages” of anorexia. Food just did not interest me or I would put a lot on my plate and eat only a spoonful. After my first strep at age 3 I continued suffering from frequent streps and colds, but luckily never pneumonia or bronchitis or else. I went to school and continued eating poorly and having frequent infections. I was top of the class though, very energetic, sporty, flexible and with a great memory. All this made my parents remain in a comfort zone and they thought I refused food only due to my stubbornness and whatever little I ate was sufficient. I remember hating any vegetable dishes and loving only (homemade) fried potatoes, burgers and readymade sweet corn puffs and potato crisps. You can imagine my mum's frustration and her resistance to give in and feed me just that. So I was offered “wrong foods” and continued refusing them, getting thinner and thinner, looking more and more sickly.

At age 7 I went to do acrobatic gymnastics and noticed that I was different from other kids by lack of flexibility and took me days and months to achieve the required flexibility the other could get in a week?s time. However I had enough energy to do sports 3 times a week and do well at school. Mum is a doctor herself but with more of the holistic approach. Her specialisation was drugs (she started as pharmacist and then became an anaesthetist!). And strange (and lucky) enough, she hated using drugs when we were sick. That was the reason she chose tetracycline for treating our strep infections. My sister's tonsils were removed at age 3 so she did not have as many as I did. My dad did not want mine removed as he learned they were a very important part of the immune system. Our paediatrician supported that view. Wrong decision!

At age 8-9, following series of strep infections, I developed rheumatic fever, fleeting arthritis and angioedema (like hives) as a reaction to viral infections. I was treated with penicillin for 1 month for rheumatic fever (follwed up by bicilline for 2 more years). After one months at he hospital, my tonsils were removed. I fully recovered from arthritis and rheumatic fever. This was a strange period for me. I was happy to go to stay at hospital as I thought it would be fun. Then I realised it meant daily pain. I got accustomed to pain caused by my illness or by falling so much I would hardly cry from a routine injury but on the other hand became very defensive and suspicious and especially of doctors as I knew they were all trying to “treat me” which would most certainly mean pain. I was ready to take pain coming from me than from others as I already had enough of it on my own, didn't need others adding to it.

My sister was “princess” – very pretty girl with curly blond hair and plump pink lips, soft eyes. And I felt I was not pretty but I learned not to notice that and beauty became unimportant for me. I learned about other values in life and learned not to judge people by their looks. My strong personality kept me in the centre of the class as one fo the popular kids and although I used to be teased and called “skin” or “crow” (as in a bird), I never took notice. It just made me tougher and turned me into a fighter. I would learn how to defend my rights and interests very well from early age, not thinking twice before challenging teachers' decisions or conduct, for example. I also learned to cope with finger pains,  the fact that I could not whistle like others (I learned the alternative way, to make sure I was no different from others, using teeth and tongue). I learned how to live with cold chills and purple fingers and how to explain to other what it was (or not to explain).

By age 11 I already had cracked and inflamed finger tips, tightened facial skin, thin features, dry (but not itchy) skin all over. I cannot rememeber going through the period of puffiness but maybe it was present but not so noticeable due to the fleeting arthritis. My plump lips and soft eyes were gone, Hair was fine and thin (but not balding). Luckily I did not suffer from all the other effects of SD. This was all I had. Extremely mild as far as SD is concerned. But what I had was confusing and frightening enough so at age 11 I was again taken to the same clinic and was told I have a very mild case (of what mum never told me, just said of Raynaud's) and that it will go away or stop getting worse after puberty. The reason of the disease was told to be environmental – Baku is an oil city, with a large oil refinery only 3 metro stations away from where we lived. I grew up watching refinery exhaust flames out of our kitchen window, on the horizon. Luckily Baku is also a very windy city so all that pollutions would be normally blown away from our city accross the sea. I don't think the oil refinery had anything to do with my condition.

I did get better. Till age 17 I was still somewhat skinny but from age 12-13 when I reached puberty, my appetite started to improve, I loved bread, pancakes, rice and most importantly, all sort of meat. No veggies still, only green apples, peaches, apricots, melons and berries of all sorts. That was all my vitamin intake which meant only in spring and summer. I would not eat apples in winter as they were too sweet. My gave me vit supplements sometimes injections. I never really had a sweet tooth. I always preferred savoury foods (probably why I refused milk and veggie purees when I was a baby!)

A little more about my diet as I think it's an important part of me not getting worse as I understand it now. Those times all we ate was organic and in our country we have abundant fruit and veg all year round plus high quality grass fed meat (mainly lamb and mutton). I never liked milk but loved plain yoghurt and ate a lot of it. It if was too sour, I'd add sugar. I also loved jams. That was all my sugar intake. It was all very limited because my mumwas very health conscious. We were not allowed sodas, chocolate, had no cereals and only very rarely potato crisps or corn puffs. That was all junk that I ate. Also, my mum always used the best oils and fats and cooked healthy. All pesticides were carefully avoided so were nitrates etc. I loved black caviar (Baku is on the Caspian, the hometown of the black caviar and it is still available there at much cheaper prices). I ate in in abundance. Same with the salmon roe and for fish we mainly used sturgeon/beluga fish which was also cheap as a by-product of caviar production. That was my fish oil intake. So, I think I ate very healthy and subconsciously and possibly due to my stubborn character avoided carbs and sugars (except for pan fried potato, white and rye bread and rice, but that was very rarely served food in our house apart from the bread). We never had any allergies and both me and my sister had dislike for milk so no diary intolerance issues either. Recently I found out I am Prime Protein Type and that explained my eating habits and food refusal as a small kid. My lack of nutrition and vitamins may have contributed to me getting SD and my food related habits also may have played role in me getting it in a very mild form.

I never took any meds for SD or Raynaud's despite doctors' advice to take Trental for my hands and toes. My mum always used alternative methods for healing – enemas with own urine (worked great and that was what stopped me from having angioedema). For purifying blood mum took me to a gerudotherapist (using leeches to suck the bad blood out and thin out the good blood), acupuncture. All this has improved my skin on the face and slighly on my hands. My somewhat knobbly knuckles of the index and the middle finger bacame normal. I never developed any major tightening over my body but I do have a very toned muscle tissue and great skin over my body many would ency (due to the extra collagen). My only persistent symptom is Raynaud?s, which however became much better with age and is very mild now. I do have pitting scars and they sometimes inflame and heal without any medication. But my Raynaud's is painless, biphasic and not more than 2 a day or sometimes none. I also get it in my feet and I have pitting scars on my big toes but they never inflame. My feet as quite soft and while one can see traces of scelrodactily in my hands, it is not present in my feet. When I was a kid I used to get inflammation on my ankle knuckles from bumping my feet to each other but it stopped now, too. I do have ulcers/pitting scars on my elbows as well (from rubbing). They hardly ever inflame.

At university, due to economic problems we had no heating in winter in our auditoriums and classes. I suffered from prolonged cold exposure up to 5-6 hrs at a time. I could only recover in metro on the way home. This lasted for a couple of years as I later found job and attended university on free attendance basis (my academic  achievements allowed me this). If not those 1.5-2 years of cold winte “tests” for my Raynaud's, I think my Raynaud's status would have been much better today.

With Engineer's Master's Degree I ended up in an airline (difficult times after USSR collapsed). At age 24 (in 2000) I got an opportunity to move to the Middle East to pursue my career in the airline. It also gave me the chance for independence. It also meant no more cold weather (little did I realise about air conditioning!). This was a good decision. My Raynaud's kept improving due to limited cold exposures. My diet became somewhat worse and by this time I had problems with excess fat on my tummy but luckily I met my husband-to-be 9 months into being in Dubai and I started exercising with him, eating more salads, less bread etc. I achieved my healthy weight by age 21 (from underweight) and was able to maintain it to date. I also did circuit training, ran on the treadmill, did spinning and was very fit.

In 2003 I was diagnosed with PCOS. My DHEA-s is elevated over 400. Natural cortison keeping my inflammation down? Maybe. My SD did start improving after getting periods, so I believe my elevated DHEA-s played a role (I might be wrong though) in keeping any sort of inflammation away from me. In general my health was great, only few colds a year, no strep since age 14-15, nothing more serious than colds.

After my first miscarriage, in 2005 I got chicken pox and was pleasantly surprised how mild it was. Which showed my immunity was not that bad after all. As a kid I only had rubella and possibly CMV (not sure, nee to recheck my records).

After my second miscarriage, I got checked for possible underlying reasons like lupus, sticky blood etc. All came back normal. I also requested the ANA test. It came back positive without any titers or pattern. That was the first specific blood test result to do with SD.

In 2006, after 2 early miscarriages I had a successful PG. At 18 weeks I decided to visit a rheumatologist for the first time after the last visit to Moscow in 1987. I wanted some blood tests to be done. By this time word Scleroderma almost never crossed my mind and I was made to believe by my mum I did not have it although I heard of it in relation to my health discussions however never associated it with myself (placebo effect? Law Of Attraction?). Once I got pregnant I changed my attitude towards my health as I was feeling responsible for somebody else?s life. I did a lot of research in the net and was quite frightened by it. I stopped researching. I would go back to researching every time one of my fingers would get inflamed though. So with all that, I wanted some blood tests to be done, to determine what exactly I had. SD still did not come to my mind strongly I was more inclined towards UCTD. I was not pleased when the rheumy without performing any tests apart from a physical exam and some questioning, told me I had SD. When I asked for blood tests he asked me why I needed to know what type I exactly had? He said it did not make any difference and as for the diagnosis he only needs to look at me to know I have SD. He told me to watch my blood pressure and return to him after having the baby for some PFT and calcium channel blockers. I did not like him and I did not go back to him.

I had C-section due to possible issues due to the limited tissue but had the most trouble free pregnancy one could wish, no nausea at all, no other associated problems let alone high blood pressure (my blood pressure has always been on a lower side). As for the stretch marks, I have to thank SD for saving me from them. With the hugest belly in the world I had NIL stretch marks! I was sure I fine, My baby was very healthy. I had perfect motherhood, 9 months of breastfeeding (although combined with work), baby sleeping through the night from age 16 weeks, my husband did not know we had a baby when it came to night or any extra work. Of course I have a housemaid (we are spoiled rotten in Dubai), but I only used her help after I went back to work. I never thought much about SD. However, my delivery was not uneventful. Instead of the planned C-section I ended up with an emergency one, coming straight from a restaurant to hospital with labour pains 2 weeks premature. So, the anaesthetist was not prepared re my Raynaud's and I lost a lot of heat during the op so that I shook violently for 30 min after the op to the extent I was not interested in holding my baby. I thought something was very wrong with me. My vital signs were normal so when they shoved my daughter in my hands, I just stopped shaking instantly. Since then my motherhood was rosy and is still now. When my daughter was 14 months old, despite my PCOS (also very mild, by the way, without any fertility problems) I got pregnant immediately after trying. I had similarly trouble free PG and delivered by planned C-section at full term a healthy chubby baby boy. This time the anaesthetist was warned and prepared, so he wrapped me in foil thermal blankets for me not to loose the heat and I had no shakes whatsoever! Again this baby was perfect and slept through 12 weeks. People would not believe this but I was not just lucky and achieved this through a methodical approach for establishing strict routines from day one. And this did help my mental and physical condition. I stopped exercising but still kept in more or less good shape weight-wise and was back to my pre-PG weight both times very quickly (not without the help of dieting (carb free), though).

My physique got weaker though due to lack of exercise. The other side effect of PGs was my hair falling out more that usually after PG. This happened after N2 baby only so I was determined to fix the situ and was sure it was lack of vits. Surely, it was and my hair stopped falling out. Another side effect I noticed after baby N2 was that my fingers when they got inflamed (as happened usually) would not heal for up to 6-7 months for the first time in my life. I kept having infections alternating between 2 fingers on the right hand only (right side is more affected in me that the left side, I knew it even from gymnastics). This continued for 1.5 years until this April I decided to take some actions. The pain from inflammation also was the worst since my early childhood or even worse. I had to take painkillers and even Brufen did not help. I had to use steroid creams and would go through a standard tube of Nivea moisturiser in a week or less – as only keeping my fingertips very moist kept the pain at the bay. The pain would wake me at nights and the cream would help me go back to sleep very quickly. I started taking Vit E 500 IU plus liquid pure Vit E on my fingertips twice daily. It healed up all the ulcers so only pitting scars (somewhat painful still though) are remaining.

So, in April I went to a dermatologist as I did not want to see a rheumy again. He doubted I had any serious problems but ordered some very specific tests in addition to full urine, blood tests, chest x-ray and ECG (RF, ESR or CRP was not ordered though). All came back absolutely normal apart from anti Scl 70 (116). So he said: “you have it”. And then: “go home and don't think about it. Continue doing what you are doing as it seems to be a right thing for you and just do annual routine tests to arrest any changes before too late”.

This is when, of course, I could not “go home and relax”. I restarted the internet search and it brought me to Rheumatic and Roadback. In the past, I also came across Raynaud's (never thought of SD, remember?) being caused by some infections. I remembered my mum using tetracycline for a long period of time while battling with my strep infections (over 5-6 years, intermittently as and when strep occurred). I got convinced there is something in the AP. I researched more on the subject and decided I would find somebody who would agree to help me with the AP.

Meanwhile, I was hearing scary things about Raynaud's and my mum's doc said I have to start on ACE inhibitors even without doing the blood test as he was sure I would have high serum renin levels (a precursor or a hallmark of failing kidneys!) I tried not to listen.  Scared, I went to a rheumatologist he recommended me. Her physical examination and questioning confirmed I have an amazingly mild case and she said I would most likely just keep getting better. She ordered more tests (ECHO, PFT, TF), just to rule out any major organ involvement and reluctantly agreed to prescribe (informally) Doxycycline. Here in Dubai you don't need prescription for any meds apart from those that can be associated with illicit drugs and she did not want to be associated with prescribing me the controversial treatment. She also said she agreed to support my quest only because I was doing really fine. Otherwise absolutely no way! She told me to come back for steroids should I herx and do 3 monthly kidney/liver/CBC tests to see if doxy has any negative effect on me. All my tests came back perfeclty normal. But I am not in remission as I have Anti Scl 70 antibodies.

Still, none of this satisfied me. Especially as I read more in the Roadback and other sites supporting AP, the more I knew I needed some more tests (ASO, for Lyme etc.). I knew she would not support as I need, so I decided not to go back to her either.

I found a GP with major in Infections. I sent him an email he could not say “no” to. He agreed to support me on this road back by filling my prescriptions, doing the necessary tests etc. He only said he would not be able to read and research into the AP or take consultations over the phone with experienced AP doctors. He requested I do that part and let him know what is required to be executed by him. This satisfied me. I contacted Dr. S and got guidance from him what to do. My physician is fully on board and even agreed to issue me a prescription of Minocin which is not available in the UAE so that I could purchase it on-line.

Meanwhile, I started doxy on the 22 June: 100 mg BID. I increased my probiotics and added lemon/olive oil drink. I also did tests for Nutritional typing by Dr. M and found out I was of the Prime Protein Type. I am now going to further improve my diet and it will be easy for me as I anyway eat only organic, no junk ( apart from an occasional “treat” served by my loving husband and caring colleagues), very little gluten (will totally remove it now) no additives etc.

From next WED I start aerobics 4xweek.

So far, no differrence in my feelings. I continue feeling energetic, clear mind, fit etc. My body temp went up a bit but I wonder it?s from a cold I am currently having? Normally I don't have elevated temperature even during cold, very rarely any fevers at all. In fact, this is for the first time in many years I am having a fever as a reaction to cold. It's around 38C, whereas it hardly ever got above 37.3C. Not that this cold is worse than all others. I am not taking any other meds apart from doxy plus supplements, not even Panadol now that I am having a cold (to see what my own immune reaction to cold is like). Maybe this has little to do with AP, but one never knows.

I promise my next posts will be only on as and when required basis and not so “wordy”.  But I hope you understand and forgive me for 30 years of SD no matter how mild, warrants a long story!

 

[aynurrzepa]

Today is 15 days since I started the AP. Soon after I started I either got flu or herxed (not sure) with fever and joint pains for 3 days followed with persistent cough from depth of my bronchs (or lungs? not sure). This is something I have not had so it's very strange and makes me think it may have something to do with the antibiotics.

I also continue maintaining gluten and dairy free diet. I added some more supplements and I will soon give the full list of what I am taking. 

From day 2 I was experiencing nausea, unpleasant taste in my mouth and loss of appetite. Nausea and the taste in my mouth are gone but I still have somewhat decreased appetite. Whether it has to do with doxy or my new eating regimen (which for me personally should be with emphasis on high purine meat and fats as per the Nutritional Typing), I am not sure, but I surely continue feeling good physically and mentally.

I also started exercising which I will gradually build up to high intensity interval (peak) training. These 20 min 3 times a week of unaerobic state are supposed to bring one's organism into a state where it self heals, burns unnecessary fats and bulds muscle strength. 

My SD symptoms are still present, I get Raynaud's attacks just as many times as before, I still have painful fingertips (all my ulcers are presently in a “healed” state, no inflammation currently) and dry hands but I started noticing my face is becoming softer? I am not sure yet. I am sure I will start noticing anything sugnificant much later and not now.

Next for me is the full hormonal status check and obtaining Minocin.

 

[aynurrzepa]

I have completed 1 month on AP. My SD is VERY old but it's also very mild. I do not feel any differrence whatsoever. It's true though I am experiencing one strange thing – still not sure if it from doxy or from flu I may have had almost a month ago. 3 days after starting AP i developed strong flu like symptoms with joint and muscle pains and elevated but not to high fever 38C for 3 days. I then developed bronchitis like cought accopmanied with bringing up bitter coloured mucus from the very depths of my bronchs, not the throat. I cannot remember experiencing anything like this in my life.  I still have the cough bringing up the bitter mucus which is much less not but still persistent. I find it strange but not sure if I can link it with doxy.

For the first 2 weeks I had nausea and loss of appetite and taste. It's all gone now and maybe I am so used to the new feelings now that I don't notice them.

Dr. S told me that because my SD is very mild I might get the results from doxy quite soon. I still could not get mino due to some aproval process going on in my company's medical benefits department and I am still hopefull to get fully refunded on my abx. So far I am using doxy. Maybe this is why I am not feeling anything yet as doxy is too week for my very old SD.

[aynurrzepa]

This is more of an update on my mental state.

I have this theory for a while as I'm trying to explain to myself and understand why my SD is so mild and have been despite 30 years of having it but no remission either. I think about it a lot because I hope if I understand WHY I will be able to maintain that I am sure fragile balance in my body so that I could enjoy it's healing effect for as long as I need (till the times Doxy/mino take care of the roote cause and SD remits/reverses completely).

In addition to my SD I also have PCOS with normal testosterone but high DHEAs + polycystic ovaries and inbalanced LH/FSH ratio. What is relevant here is the high DHEAs whereas I know that people with our conditions are quite inclined to having low DHEA/DHEAS rather than high or even normal and quite often need supplementation. How come my DHEAs is elevated? Could it be my body's adaptation to counterreact the effects of SD which gives me PCOS as a side effect? Is this why I have no inflammation and very mild SD? If I keep my DHEAs up, will it mean I will be safe of SD effects? I also have a slightly elevated albumin which is possible when there is increased insulin in the body and/or adrenal hormones both of which are related to PCOS (my insulin isn't really high though but could be lower to be more perfect)? My SD stopped and started backing off from puberty onwards, when my hormones were changing. As a result, I ended up with my body deciding to produce too much DHEAs probably to supress the immune reactions but it also gave me the PCOS and because PCOS is a side effect and not the standalone condition, it's mild, too so that I have no probs with fertility! Which just leads to believe just how important DHEA can be to help people with autoimmune disorders? And of course, being a cortisol pre-cursor, it acts in the same way as the synthetic steroids but without the bad side effects.

On MON 26 June I am doing the complete re-evaluation of my hormonal status and glanduar functions. I have been avoiding gluten and starches and introduced 3 weekly exercising so in theory my insulin from 7 should have moved down to more favourable 3-5 (up to 10 is normal though)? Also, because I am takng doxy (and If my theory is probably) I expect there shoudl be no need for so much DHEA and it should start reducing. The thing is my periods for the last 3 months have been just so perfect I cannot believe I still have PCOS. So, my diet woudl have improved PCOS which should mean my DHEA should also be normal. What does this mean for SD? Good or bad? Probably it's lucky I started AP soon after the diet so that that elevated DHEA is required less now that the root cause of SD (mycoplasmas) are weakining? Another concern/thought is if DHEA plays such a massive role in controlling my SD, what will happen when it starts decreasing due to age? Or such normal course of events is not applicable to me – a DHEA-SD mutant that I might be?

I know this all is probably too much to understand or to agree with and I might be completely wrong and what's more my hormonal re-evaluation will probably show the results which will prove me wrong. CAn anybody else see the same logic in “my theory” and DHEA should be recognised even more than it is now as one of the important elemets in treating autoimmune infections along with AP being a natural cortisol pre-cursor hence better than steroids (just like the differrence between VIT A Retinol (too much bad for you) and Vit A pre-cursor Beta Carotene (too much not bad for you)?). It is also possible not all individuals have the ability to convert that extra DHEA into the natural conrtisol for helping specifically with SD/RA/SLE/AS/Fybromialgia etc rather causing the pure bad hypercortisolism?

Just loud thoughts for the time being, will see with time if any of my above guesses have any grounds!

[aynurrzepa]

Just some update 5 months into AP.

My treatment plan is:

100 mg Minocin BID, eff 20 Jun’10
1000 mg Niacin
Vit D3 50,000 daily (extremely low D3)
LDN, 4.5 mg QD, eff 15 Nov’10
Systemic Enzymes: SerracorNK and SerraRX (I have excessive fibrinoged as per the blood work, so I have somethign to gauge progress and effect of using systems enzymes)
Krill oil with Evening Primrose Oil
Virgin Coconut Oil, 3 tbsp /day
Antioxidants: Beta Carotene 25,000 IU/day, Vit E, 800 + IU/day, Ubiquinol,
Biotin,B6, B12
Alpha Lipoi Acid
Probiotics 66 billions x 2 day
Reservatol
Multivitamins
Nutritional Typing – Prime Protein Type

From June’10 my imporvements on all fronts:
my mild PCOS and hormonal imbalance gone together with menstrual cramping
TTL cholesterol reduced from High to normal 247 to 207. My TTL cholesterol is still high but my ratios are most perfect (even when it was 247)
Vit D3 doubled from 6 to 12 ng/ml (still low but seems to improve)
My face, lips, nose and eye lids are softer; I feel my mouth and lips move more and easier, lips strech better, entire body feels softer and wobblier (I have muscle fibrosis more than skin, mild skin hardening only on face and more on 3 fingers on each hand)
Pain between my shoulder blades is decreasing and muscles feel a lot softer and more pliable all over
SOme other evident positive chenges in my reprodictive area directly previously affected by SD
No colds or other infections since I started AP and the above regimen despite others getting sick around me.
Raynaud’s attacks are less and shorter, generally I feel warmer than before
All blood work remians perfect, except for the antibodies as per below. No measurements for inflammation marker were re-done, but JUN

On the other side:
Anti Scl-70 increased from 116 to over 200 (they do not specify once it passes 200)
ANA 5.3 (cannot find previous values to compare)
The 2 fingertip ulcers on the right hand (thumb and middle finger) still inflamming periodically – they get worse everytime before they properly heal. This has been going on for 2 years now. However no new inflammed ulcers
Last few days my affected hand is more swollen and warm than usually. Normally this is limited to the affected fingers but occasionally it spread to the entire hand as happened now. Maybe I am fianlly herxing? Or this maybe just a flare up.

In a moths time, when I have more tests done, I will post another update

[aynurrzepa]

OK, it took a bit longer than I thought but here is my update

I’m excited but not holding my breath just yet…

Today I had some test results back… for the first time my ANA was NEGATIVE! 😯 I hope it’s not a lab error, it would be too cruel 🙁 . I am awaiting anti-scl-70 test result as well, so will be interested to see that… in theory it should be negative well, if generic ANA was?

I do not feel much of improvement but I do notice ever so subtle changes to better… my two 2+ year old fingertip ulcers have almost completely healed and smoothened, my face is softer, my body wobbles more when I walk, my tummy fat became more pitted and my tummy sags more than before (khmmm, cannot believe I think it’s an IMPROVEMENT 😆 !)

Also, my vit D3 is now 66.2 ng/ml! I’m so happy. I will restart Vit D supplementation 4,000 IU which I stopped because my last lab result was 1864 ng/ml 😯

And, my fibrinogen decreased, too – from 467 to 443. Not too much, I know, but I only did 4 months of systemic enzymes (SerracorNK). I will up my dose and see again in 3 months!

Happy? yes! Anxious? yes!!

[aynurrzepa]

OK, I finally received my anti scl 70 result. It’s still positive but it reduced from over 200 in Sep’10 (in that lab, if over 200, they don’t specify the exact level). It’s now 119.9. It was 116 in April 2010. In Brown’s book it says that before antibodies go down, they first may go up once AP is started. So, I hope that’s what it is.

However, I’m confused about negative ANA. If ANA is negative, how come anti Scl-70 is still positive. CAn one go down before the other one? Or was “negative” a lab error? I hope not

[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!

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