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Hi!
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 aw well, so will be interested to see that… in theory it should be negative as well, if the generic ANA was?
I do not feel much of improvement but I do notice ever so subtle changes to better… my 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+SerraRx80). I will up my dose and see again in 3 months!
Happy? yes! Anxious? yes!!
Oh and while I’m on the subject, here are 2 pubmed articles on usefulness of systemic enzymes and how they work (or rather: “do they actually get into the blood stream from GI?”) for those who have doubts…
What great news, congrats!
Just a question- Do they give you the sed rate lab test and crp lab test for SD ? I don’t know much about it and I just pickup bits of information around here, so it was something I was wondering about, not for myself, I was just curious.Hope the other test comes out great too. Take care,
SheriFantastic news .. you must be stoked 😀 😀 😀
Dec07: Diagnosed PRA, (CTD; Fibromyalgia; suspected Lyme):
Mar08: Diet to heal gut/bolster immune system (no gluten, dairy, sulphites or sugar)Jan 2018: ABX Mon/Wed/Fri (started AP 2008)
1/2 x 150mg Roxithromycin(Biasig), 1/2 x 150mg Clarithromycin (Klacid),
1/2 x Fungillin, 1 x 250mg Cephalexin (Keflex)All off days Probiotics
Anyur, this is absolutely wonderful news and so happy to hear your finger ulcers are nearly healed, too. 🙂
I usually avoid my supps (not probiotics), like Vit D3, on the day of a blood test, as I sometimes wonder if supps can skew results. 😉
Aynur —
Yay!!!!!!!!!!!!!!!!!!!!!!!!! 😀
This is such good news. I’m happiest of all to hear that your fingertips are healing… even more important than blood test improvement is actual clinical improvement!
It is a thrill to hear that for the first time your ANA has gone negative, I hope it stays that way and also that the Scl-70 goes negative too — with the all the corresponding symptom relief as well!
I hope you share your great news with that “other” SD board where you are working hard to help raise awareness… you are the true inspiration! 😉
A
Oh thanks to all for your kind words of encouragement! Yes I am stoked indeed 😀 But you can imagine how anxious I am to see what other antibody test result will be… All those who can cross fingers (certainly difficult for me and probably for many other SDers) please do so for me!!! 🙂 But still, I am very positive even if anti Slc-70 comes back positive… Parisa is right – one small step at a time!
Maz, I stopped taking Vit D3 a month before the test, so I think that is the true number this time. I was fasting 12 hrs for the tests, only some water and coconut oil. I’m still waiting for D1 and D2 resutls as well.
Although my ulcers have almost healed, I still have pitting scars – not painful but not gone either. Couple of them have definitely improved though – not as deep. I cetainly can open my mouth easier now – I have been to dentist a month ago I did not feel any pulling on my lips while she was cleaning/polishing… For the first time in many many many years!
Sheri, my ESR and CRP have always been normal and this time as well. I request those always anyway but not sure whether they are part of the SD panel… My only blood marker of inflammation that I know of is the elevated fibrinogen.
Did I mention here that for the last 2 months I have been really really tired?.. Even when I was pregnant I did not experience such fatigue. I just started improving but getting up in the mornings is still too hard – I just cannot open my eyes and pull myself out of the bed. i think this is my only sign of herxing… As Maz suggested it could be that I need some serious detoxing. I increased my coconut oil dose and ordered Humaworm – I have lined myself up for some liver/GB flush before taking the antiparasitic supplement and some of their other products. Plus we are moving very close to one of very few chiropractic centres in Dubai and I plan to visit them for some detoxing as soon as we move in near there (end Feb). And my husband promised to get us the Far Infra Red sauna…yay!
Once I get the rest of my results, I will post on Inspire as well…
Hi–SED rate and CRP blood tests have very limited value as markers in scleroderma –SD is not considered an inflammatory disease rather its a collagen vascular disease –the vast majority of SD patients will always test negative for these .. Nail fold test and ANA and scl 70 and anti -centromere are more helpful –even though many many people test negative for these –although if the ANA was ever elevated and then reverts to normal –thats certainly a very optimistic marker !!!
richieRichie – Here are my SED and CRP values. As can be seen they were high, but have returned to normal thanks to AP.
Randy
Diffuse SD since Apr '07
AP since Feb '08
100mg Mino twice daily
Stopped Clindamycin IVs Aug 2019
"No one should profit over someone else's illness"Hi Randy,
That’s pretty interesting – thanks for sharing your ESR and CRP labs. Looks like your ESR wasn’t off the charts, but that you had quite a bit of inflammation, going by your CRP results. Did you notice the elevated fluctuations coincided with your monthly IVs and herxing?
Hmm, somehow I cannot see Randy’s ESR/CRP values but it’s OK, I can guess from the discussion…
Anyone of you measured fibrinogen at all? How did it change with your symptoms improving? I’m especially interested to hear from those who also took systemic enzymes!
Thanks!
PS still anxious as still no anti Scl-70 results… 🙄
@Maz wrote:
Did you notice the elevated fluctuations coincided with your monthly IVs and herxing?
Hi Maz,
I do not believe this data provides any correlation to my IV’s. I can easily say this because I am still doing the IV’s and these values of interest have stayed normal for over a year. By the way, Dr. F. was very pleased with me when he saw me yesterday. However, he does not want me to stop the IV’s yet.
Randy
Diffuse SD since Apr '07
AP since Feb '08
100mg Mino twice daily
Stopped Clindamycin IVs Aug 2019
"No one should profit over someone else's illness"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 🙁
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