Home Forums General Discussion Good news to share!

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  • #300737
    Maz
    Keymaster

    Hi All,

    Just wanted to share some personal good news with you all. Since starting with very severe, swift onset RA, triggered shortly after getting Lyme Disease in the Fall of 2006, my anti-CCP has always been somewhere above 60. The lab I use for my bloodwork just gives this 60 number, as an upper parameter, and this test is generally considered to not only be confirmation of RA, but also indicative of severity and prognosis.

    Well, my doc just called and left a voice message early this morning (while I was still snoring away) and was excited to share the news that my anti-CCP had come down in the past 2 months…from somewhere above 60 to 45!

    This number has always dogged me, just not knowing how high it was at my worst and wondering if it would ever come down below the high end of the reference range. In the field of rheumatology, this number is generally measured for the purposes of diagnosis and an indicator that aggressive, early treatment is required with immunosuppressives.

    I still have to call him back on Monday to ask about my other inflammation markers…cardio CRP and RF….but he also remarked that these had come down further, too!  I will do a more detailed update on my progress thread when I get a copy of my bloodwork to share the specifics of these improvements.

    While it's important to note that physical improvement can preceed bloodwork numbers (and vice-versa) and that physical improvement is probably the best gauge for AP therapy, I must admit, it is very heartening when those numbers start to reflect this improvement.

    Just thought I'd drop a line to give all the newcomers and those newly on AP to hang in there and keep the faith! While progress on AP may be slow to start, because this therapy is very much a long term therapy…. it works!

    These improvements mark my 7th month anniversary on AP.

    Here's to a return to health for us all.

    Peace, Maz

     

    #316178
    GlitterGirl
    Participant

      Such wonderful news Maz,

     

          Thankyou for sharing them, it certainly helps to realize that it takes some time, longer for others, to see significant results, how quickly I can revert to a way of thinking that is deeply apart of my belief system, It'll  never work”  If I don't see quicker results, Like where does that come from?  I guess it's about just putting one foot ahead of the other, keep on trucking, and only when it happens to yourself, is when you know it truly works, I guess it's a self preservation thing, or just thick headed.  And reading the successes of others, who have persavered, and are a few steps better than they were acouple of weeks ago, how exciting is that, when I first started logging on, I used to think y'all might have been like one or two persons, writing all this great stuff, hahahahahaha, how mental is that?  Now I know you are all for real, and Maz, you are an ispiration to me, what amazes me is that there does not seem to be a bit of hesitation about if this works, it just does, and your message just instills such confidence, it leaves very little room for negative thinking, or doubts.  Thankyou very much for your message.  Wishing you every continued success on your road to wellness Maz. 

    GlitterGirl

    #316179
    Lizz
    Participant

    Maz- YEAH!!!!!!:roll-laugh: You are an inspiration to all!

     

     

     

    ______________________

    Lizz R/A 11/07, AP 5/07

     

     

     

     

     

    #316180
    Parisa
    Participant

    I'm happy to hear that you have confirmation that you're headed in the right direction.  Your doctor actually called you at home with the news?  How nice.

    #316181
    John McDonald
    Participant

    Good work Maz!:)

    Glitter Girl said

    …how quickly I can revert to a way of thinking that is deeply a part of my belief system, It'll  never work” 

    That seems to be part of the territory. Even when I had very substantial remission if I had the slightest joint pain for a moment I was instantly emotionally convinced that the protocol was failing. My head had to speak to my heart quite a lot for several years. Nearly everybody seems to have this doubt experience. But this gets better. I have to say that the panic and fear are gone. I am forgetting what it is like to have RA. May you soon join me in looking in from the outside.

     (Now if only my head would listen to my heart once in a while. ;))

    john

    #316182
    Kim
    Participant

    That's awesome, Maz!!!  What a shame you missed his call, although at least now you can get all your thoughts organized for when you talk to him.  Can't wait to hear the rest of the report so, please, do tell………kim

    #316183
    Tiff
    Participant

    Hooray, Maz!

    That lab test has been a big obstacle for me because of how hopeless it made me feel.  Mine is now <20, but I have to admit, I have wondered if there was a mistake because that was not supposed to happen.  Have you talked to your doctor about it?  I did not get to with mine, so I am still wondering what her thoughts were, if she was as suprised as me.

    It is kind of fun confounding the docs, isn't it?

    #316184
    Trudi
    Participant

    Hi Maz–

    I am so happy for you!!!  Your confidence in this protocol is contagious–way to go!!

    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?

    #316185
    prix560
    Participant

    Great news Maz.  It does make us newbies feel good that others are having success especially since you have only been on it for 7 mths, that kicks but.  I am going to mark a 7 mth date in my calendar to compare myself with Maz when I get there.  I marked my Outlook calendar for Feb 3, 2009. 

     

    Way to go Maz, as happy as we all are that you are making progress, I bet you are even happier to be experiencing it.

    #316186
    wendi
    Participant

    Maz,

    That is wonderful news.  I waswondering if those of us with high ccp numbers would ever see them go down.  It is great to hear that yours did!!:)

    My lab does over 100 and that's where mine is.  It is very scary to me.  Maybe no so much after hearing your news.

    Thanks.  Can't wait for the rest of the update!

    wendi

    #316187
    Maz
    Keymaster

    Hi All,

    Thanks so much for all your very kind responses!  It's great how everyone roots for everyone else here….we all manage to keep eachother buoyed somehow, through thick and thin. 😀

    GlitterGirl, keep the faith…it's very early days for you and it can be a rocky in the beginning, but keep your journal going and keep watching your progress and you'll be amazed when you look back!

    Parisa, yes, Lyme doc always calls with blood results, unless I'm scheduled to go in for an appt for follow-up a week or so after its drawn. I was surprised he called on a Saturday, but he's been watching that anti-CCP number with great interest and we always have a joke about it. So, I bet he was doing the happy dance and had a grin on his face when he left the message.

    Tiff, I know how you feel…that anti-CCP is a bit like one of those harbingers of gloom and doom by the standard interpretation. It's just not expected to come down to that degree and so swiftly with the usual drugs. I was thinking that even if my anti-CCP had been as 'low' as 60 at last count, to come down by 15 points in two months is basically astounding. As you say, <20 is a negative reading - my math is horrible, but I think that would be about a 35% improvment. I was checking out a study on Remicade (infliximab) and this kind of decrease in anti-CCP just doesn't happen...even over the course of a 78 week study. My doc has always been confident mine would come down with antibiotic therapy...it was just a matter of "when" in his book and how to adjust the meds to get the optimal mix. Would love for there to be an actual study done on this, though, comparing AP to biologics. Maybe it's one RBF could do in the future, to bolster the MIRA trials, but it all takes funding....and funding is all reliant on donation. 

    http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=416448
     
    Wendi – I was kind of glad I didn't know what my anti-CCP number actually was when I was first diagnosed in Dec '06. My Lyme doc was going to call the lab to see if he could get the actual number and I said, “Why bother?” Let's just keep going till it gets below that 60 number…I think at the time I just didn't want any more bad news. He agreed. I think I just had enough on my plate, getting myself well, and to know the actual number would have felt like another battle to wage. I can do a good ostrich impression sometimes! Sure, the numbers give us a boost when they start to come down, but I didn't want that to be hanging over me, too. Choosing AP, I decided to just trust that I would get well and it would happen when it happened. This said, if it makes you feel any better, the RF is much more sensitive to what is occuring in the present moment. Anti-CCP is one of those diagnostic numbers that is rarely checked by your average rheumy after initial diagnosis – it just doesn't change much over time and isn't as sensitive to improvement – and is mainly used to gauge what level of attack is needed with immunosuppressives at the outset. In fact, according to some articles I've read, it can be positive for a decade before disease even manifests! That, to me, says that it's picking up an underlying anomaly (infection!) that is just waiting to burst forth. The good news is that it does come down with AP, though…if you do a search in the box above, several people have posted about their Anti-CCP numbers falling quite dramatically over time. You'll get there, too. 😀
     
    Trudi, Prix, Kim, John and Lizz…..hope that gives everyone a mention…..thanks so much for being there and celebrating with me. You're all my rocks!
     
    Peace, Maz
     

    #316188
    Jennhere
    Participant

    That's great news!:D

    Jenn

    #316189
    superperroRA
    Participant

    Couldn't happen to a nicer person. Someday Maz, when I get better too, maybe we can throw a basketball or dancing party. Two things I am pining to do again

    #316190
    casey
    Participant

    Hey Maz,

    Soooo very happy to hear this ! You certainly deserve this and in such a short time!!!!! Sounds like you have a great doc as well. Keep it up and when you finally fly here to see your bro, you can RUN right around the block and  I'll meet your for coffee in between!!

    Keep it up,

    Casey

    #316191
    Patti D
    Participant

    Way to go Lyme sista:):):):):):):)

    There is 7 of those little smilers for you to celebrate your 7 months. The anti CCP & RA seem kind of like a back door report card. We have been told by the “specialists” all the doom & gloom news based on the numbers alone so I personally had sealed my fate with that anti ccp. My first anti -ccp was 221 and the next rheumy did the over 60 thing so really don't know. Now I wonder if it could really take sometimes decades to come down, could it be a real stresser if we ask to have it rechecked like you did. I will have to ask for it as my doc is not a AP doc or a LLMD so his belief is those numbers should never change:shock: You are an inspiration to so many of us that I can't begin to tell you how this has made my day:D I am looking at joining in your celebration real soon.:roll-laugh:

    Happy days!!

     

    Patti

Viewing 15 posts - 1 through 15 (of 67 total)

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