High Anti-CCP

[Sierra]

I forgot to mention that my anti-ccp was a “strong positive” about 5 years ago. At my last visit I asked my rheumy if she ever re-checks RF and anti-CCP and she said no, “they don't matter.” From her brief explanation that followed, I gathered that she feels they are helpful for diagnosis but not so much for monitoring the patient afterward.

Sierra

[Patti D]

Hi Lori

You and I share the same kind of doctor, one who knows nothing of Dr. Browns book and knows nothing of the “Arthritis Breakthrough book”. My dr. prescribes mino because I asked him to. It is listed as a dmard,”disease modifying medication” so technically they have to offer it at your request as it meets the”gold standard of care for rheumatoid arthritis”, hence the treatment bible for these diseases that rheumys follow. The doctors who follow the “gold standard” will prescribe as my doctor does, minocycline 100mg 2x daily. There is no pulsing dose and this protocol is set up so this drug can be used as an anti-inflamatory not a cure for disease as we hope with the information found in “The Arthritis Breakthrough” I did not care what the doctors opinion was, I just knew I had to take the minocycline as based on Dr. Brown's research, it made sense. I was initally treated for lyme in May, 2007 and had great results with doxycycline . 4 months later, I had all of the same sick feeling, no joint swelling but felt terrible with lots of joint pain that moved all over very fast and was then diagnosed with the RA:crying:, based on my blood work alone. This is my second rheumy and both wanted me on the methotrexate. I could not consent . On Friday I saw the rheumy and he does not want to see me again until October as I am feeling so much better. I still have joint pain but it is managable. I teach first responder training and have to be on the floor alot teaching CPR which has been very difficult to do, but I did it and haven't missed a day of work through this ordeal.:roll-laugh: I am to continue with the minocycline!!

So my friend, here is what I am trying to do. Ignore the gloom & doom advice from the doctor. Anyone who takes away hope takes away healing!!!! Focus on teaching yourself each day to wake up and say, thank you for my healing and believe it. Don't let anyone take you down the path of depression. You are young and feeling good. Gone are the days of”compliance with the medical community” This is the age of colaboration and informed decision making. You have the right and the responsibility to be your own advocate. I am doing the same. It is really hard for me to get this as I am a nurse but when I read of drug side affects for most of the RA meds, it becomes very clear that my decision is correct at this time.

I too am worried about joint damage as my doctor hasn't done any xrays and isn't seeing me again until October. I am having faith that this is the right way. Please let all of those negative thoughts go. You will speed up your healing. Keep in contact with this board. There are brillant people here and will help you cope in a positive healthy way>

Happy days !!!

Patti D.

[Time_of_my_Life]

Maz – Yes, I too believe that a doctors words can make or break our spirit and our ability to heal our bodies. I know this personally as when I was first diagnosed with RA I went into a deep depression.  I thought I knew what depression was before but I wasn't even close.  I was in the darkest place I have ever been and it took me about a good month to dig myself out of that deep, dark hole. Our minds are a powerful tool, and my Dr. caused me much emotional harm when she gave me no hope. That being said, I believe we can turn that fear into strength.  I, for one, needed to find my own hope and in finding this site and AP, I have done that.  Dr. Browns legacy is truly my hope.  I am not going to let my RD steal that away from me. I like the words of the author Pema Chodron, that you wrote of… about a hero not being someone who does something great, fearlessly, but as someone who carries much fear, but does that something great in spite of the fear.  I never considered myself a hero ever, but fear does not have to make me weak and I can and will turn it into something great.  I am already on my way. 🙂  Thank you so much for sharing those words with me.  I have written them down and read them daily.  They make me a stronger person.  You, This site, and all the great people that have overcome their own fears to help themselves and others have made me a stronger person and I thank you all.  Yes you are so right Maz.  We are all warriors and heroes. Each time we face our fear, we gain strength, courage, and confidence in the doing. 

Here's to the power of mind and spirit.

Lori

[Time_of_my_Life]

Patti – There is power in knowledge and armed with this knowledge I will be in control of my health, not my RD!  I have learned so much from you and many others on this site.  I will not let anyone take away my healing or my spirit!  If my RD will not respect my choice to be on AP then as Maz says, I will fire her! 😉  This is my body and I know what is best for me.  I am my own advocate.  I am keeping the faith.  I believe!  Thank you for your words of encouragement. 

Lori

[Maz]

[user=212]Time_of_my_Life[/user] wrote:

…We are all warriors and heroes. Each time we face our fear, we gain strength, courage, and confidence in the doing. 

Here's to the power of mind and spirit.

YES! Way to go, Lori!!!!  I got tingles all over as read your post. :roll-laugh: You certainly are on your way and we're all on the same path with you. At least here, we can all find sanctuary and where some kind soul can carry the load for us for a bit when we stumble and have trouble getting up again. I still have days like this, too…we all do on the road back to wellness and at times it's so easy to forget how far we've come. The journey isn't easy, but you're so right that it holds the potential to build all kinds of character and an inner strength we never knew we had.

Thanks for the uplifting post – you're a treasure!

Peace, Maz

[Patti D]

Way to go Lori!!!

I am with you. We need to stick together as we are all going through the same thing. I am going to listen carefully to your posts as your recovery will be amazing.

Maz,

Your words are so encouraging. I read your full bio and believe you will get through this as well. You have good medical care as well as an”inquiring mind!!!” That makes for the best scenerio.

Keep the hope/peace ladies!

Happy days!

Patti D

[Maz]

Your words are so encouraging. I read your full bio and believe you will get through this as well. You have good medical care as well as an”inquiring mind!!!” That makes for the best scenerio.

 

Patti – I remember when you joined a while back and so happy to hear you're doing much better! Our stories are very similar – Lyme being the start of our RA. So glad you're still here and posting. We'll have to keep tabs on eachother's progress as no doubt we will have much to share with one another on this journey. I'll be sure to watch out for your posts.

Thanks for your kinds words of support – means so much. After a rotten day on Monday, am feeling 90% there today! Knees best yet and ankles are less swollen. YAY! These little flickers of continued improvement are so heartening. 😀

Thanks also for taking the time to read my personal progress thread. Please go ahead and add yours when you get a moment. The more the merrier! 

Peace, Maz

[Patti D]

Maz,

I had a rotten day yesterday too. Ached from head to toe. I went to bed early, got up and out the door for work this am and now that the rain has fallen, I'm better. You let me know that “human barometer” thing  is part of the process. Yuck Wisconsin weather changes constantly.

Happy days!

Patti D 

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