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Just got a call from my LLMD to let me know that my RF is now reading 16 (<14 is normal) and my anti-CCP is now 29 (<20 is normal) !!!!! :roll-laugh:
At my worst, 2 years ago, my RF was in the mid-500s and my anti-CCP was somewhere well over the upper range given by Quest for this number (>60 = severe disease).
Both these numbers have been coming down slowly but surely after a period of 3 or 4 months of initial worsening, exactly as described by Dr Brown.
For those interested in the anti-CCP….this was above 60 last May '08. By July it was reading 45, by November it was reading 35 and now, two months later, it is reading the current 29. So it has been coming down consistently. According to Quest, below 35 = a mild positive, so if I can get it below that magic number of 20, I'll be in clinical remission from RA in terms of bloodwork.
My cardio CRP is still elevated at 13.9, but I had just come through a herx, so I figure it's probably related to that. This has been the most perisistent number to come down throughout.
For those with Lyme, what might be of interest is that my most recent symptoms have morphed somewhat. Rather than fixed, burning joint pain, my symptoms have made a return to the early palindromic muscle and joint pain that is so typical of early stage Lyme. The degree of pain is not nearly as bad as it was in the beginning…more phantom-like in nature, but nonetheless a little unnerving when it happens. E.g. very brief shooting pain in a bicep causing me to be unable to lift my arm. This will last a few hours only or I will wake up and it's as if nothing happened. My LLMD mentioned that for some people, as Lyme remits, the early symptoms will sometimes make a return (burning in and out intermittantly), but that this is a good sign. Of course, everyone is different, but I'm keeping the faith that he's right!
Hope this news give everyone a bit of a lift that antibiotic protocol does work in even the most severe of cases. This is important to know for those who are starting out, in pain and scared, because the recent American College of Rheumatology treatment guidelines for RA does list minocycline as a DMARD, but its wording is very limiting:
http://www.medscape.com/viewarticle/575597
“Minocycline monotherapy is recommended for patients without poor prognostic features, with low disease activity, and with short disease duration.”
My initial prognosis could not have been more poor and I had very high disease activity. The only characteristic of my disease that fit the ACR profile for the use of minocycline was “short disease duration.”
Antibiotic Protocol has worked very well for me!
Peace, Maz
Maz- Congatulations! I am sooo happy things have turned around for you, and overall, that you are feeling better. I wish you complete return to health this year!
All the best!!
_________________
Lizz R/A 11/07, AP 5/07
Hi Maz
Let me be the second to congratulate you on these fantastic figures ! This is such great news. Well done on hanging in there, despite having such severe disease at the outset ! That remission is definitely within sight now !! :roll-laugh:
It gets a bit confusing with all the different supposed normal ranges for the same thing. For instance your RF normal is <16 and mine is <40. But a quick Google has shown me that there are in fact several different types of RFs and tests,so as long as we are comparing values from the same tests it doesn't matter. I expect this will also explain why my CRP values are whole numbers and some people seem to be quoting decimals !
I was never tested for the anti-CCP.
I can relate to what you describe about burning pains – that's how I would describe how my shoulders have felt up until quite recently. Now they hurt but it's different- more of a sharp pain which can sometime be reduced by wriggling it around a bit so that it does a big, and often painful, click – but feels better afterwards !! Quite a few of my joints do clicks like this – I remember you posting a while back about how yours did that when the infection started to come out. I'm hoping it is a good sign.
I'm still not 100% certain I don't have Lyme although I have tested negative – may ask Dr H if he knows anything about Lyme when I see him next month.
I am certainly very interested in what you say about the AP working, in your case, for a much worse disease situation that that which the ACR say it works for. When you look at the severity of some of Dr Browns patients who recovered, I have to agree that I think the ACR are wrong. I will never know how bad mine might have been if I hadn't gone on AP so early, but on my fisrt visit to Dr H he said it looked as though it was quite acute, and I wouldn't describe it that way now.
Anyway, thanks for being such an inspiration to us all, both in your fantastic in-depth knowledge, and also in showing the way in getting better yourself. :roll-laugh:
Katie
Way to go Maz!! I am so happy for you. Kind of figured you were doing well when you posted that you were hosting a New Year's Eve party and needed to clean your house. You don't do that if you're not up to par. Can't wait until I can clean my house again–although I can't believe I'm saying that :roll-laugh:!!
Take care,
Trudi
Lyme/RA; AP 4/2008 off and on to 3/2010; past use of quinolones may be the cause of my current problems, (including wheelchair use); all supplements (which can aggravate the condition) were discontinued on 10/14/2012. Am now treating for the homozygous MTHFR 1298 mutation. Off of all pain meds since Spring '14 (was on them for years--doctor is amazed--me too). Back on pain med 1/2017. Reinfected? Frozen shoulder?
Congratulations Maz! That is awesome news! With all of the time you spend helping people on the Board, it is so nice to see you doing so well! I am so happy for you!
Congrats Maz, and thanks for the detailed update of what you are going through.
I confess that I don't understand many of your numbers being as the only thing I have ever had was a slightly elevated sed rate, but I do know that its all good news for you! I'm so happy for you that your numbers are going down and you are feeling better. It gives us all hope. 🙂
Hi Maz,
Congrats too, wow, I seemed to be doing a lot of congratulating this morning, makes waking up seem worth while :blush:, both you and Tainabell!
That is great news and even better for you, Maz that is unbelievable readings, 500 down to 16.
It does help to read this positive posts, expecially when some of us are not feeling the best at times, it give us so much confidence in this therapy to keep going……Annie
Diagnosed with RA in 2004, after trying many conventional meds I changed to mino.
2015 changed to doxy 50mgs
2016 went off doxy, after getting double pneumonia and massive flare put myself on 250 mgs Zith & 50 mgs doxy, which I will increase slowly.
Supps, magnesium, NAC, vit c, krill oil, oregano oil, thisylin, turmeric, olive leaf extract, vit B, multi vit.Wow Maz! That's absolutely fantastic news. You go girl! 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)A big hug and well done Maz,
It is absolutely great that your numbers are down that far ….
Whatever you are doing keep on doing it, remission seems to be around the corner!!
Maz-Aust 😀
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
Way to go girl!!!
That is just fantastic! I get my blood tested next week so I will let you guys know if there are any changes. I am hopeful!
Katie,
You remind me of myself, always creaking. Made me giggle. Hey, at least we are moving!!!Trudi,
Did you ever in your wildest dreams, hope that you would be able to clean your own house? The only good thing about all of this is the fact that I have learned to appreciate everything I have much much more<
Life is good.Happy days!
Patti
Fantastic report, Maz! You must just be giddy every appointment now, and you're so close that you can just sprint to the finish line.
What an inspiration you are……..in so many ways.
Way to go Maz…My numbers are very close to your starting numbers! Can't wait till I can make the same claims!!!:D
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