ccp level

[dotsdaughter2]

How do we lower our CCP levels min are extremely high, any help please

[DianaW13]

Hi there,

I think you mean CRP (?)

Mine was high for some time until the AP started to kick in. However, about 3 months ago I cut wheat/grains out of my diet. Low and behold, my last test shows 5.9! (it was as high as 62 around March). Perhaps it would be worth looking into for you. I have read about cutting wheat for some time but kept putting it off.

Hope this helps.

Diana

[Dawn]

The CCP – cyclic citrullinated peptide vs. CRP – C-Reactive Protein; they are two different tests. The CCP was an indication to my GP to send me to a Rheumatologist, who then tested CRP & RF (Rheumatoid Factor).

Best, Dawn

PS – my CCP was off the scale, I have no idea where it is right now but am using my response to therapy as the best indicator of improvement.

DawnF

[dotsdaughter2]

Iam a little scared because is over 350 thast pretty high, I will try the wheat. thanks for the reply

[tbird2340]

Mine is really high too.. It has been coming down but oddly, I feel the worst I’ve ever felt! 😯

Anti-CCP (Normal < 5)
5/04/10 – 527.5
2/18/11 – 454.9
8/01/11 – 367.8
4/30/12 – 354

RF (Normal < 14)
5/04/10 – 34.4
2/18/11 – 41
8/01/11 – 45.5
4/30/12 – 36

I just got bloodwork last month and forget what he said it was (got copies but haven’t really looked yet).. I know he said it was in the 200’s though which is still coming down! Whack!

[bonnielou]

Tom, that is not good news — that this is the worst you have ever felt. I am so sorry to hear that. I think you had switched to an LLMD — are you using Maz’s doctor? I know she thinks the world of him.

I have had more issues this past year as well. I am actually going out to California in December to consult with Dr. F. But I don’t think I have lyme in my equation — just RA. (Although it seems from what I read on here that lyme may be a hidden part of many of these illnesses).

Let us know your plans.
Bonnie

Bonnie Lou
RA 02/07,AP 10/07
Minocycline 200mg MWF; Plaquenil 100mg 3 days/week
Fish Oil, Ubiquinol, Turmeric, Vit C (2 grams) , MultiVit, Magnesium, Astaxanthin, D3 (5000), probiotics and a daily dose of yoga!

[tbird2340]

@bonnielou wrote:

Tom, that is not good news — that this is the worst you have ever felt. I am so sorry to hear that. I think you had switched to an LLMD — are you using Maz’s doctor? I know she thinks the world of him.

I have had more issues this past year as well. I am actually going out to California in December to consult with Dr. F. But I don’t think I have lyme in my equation — just RA. (Although it seems from what I read on here that lyme may be a hidden part of many of these illnesses).

Let us know your plans.
Bonnie

No, I don’t go to Maz’s dr. I’ve been going to my LLMD since about April of 2010. I just went to him this Tuesday and mentioned to him how much pain I’m in..

One thing we are going to try is to go off all abx (I was on 400mg per day of Mino and 1,000mg per day of Clarithromycin). I am going to go hardcore gluten free (he told me to do that a long time ago but I never fully did it.. Would cheat off and on and he said I may as well not even do it if I’m going to cheat).. Also going to drink at least 80oz of water per day and take numerous supplements (list is at home)..

I tested positive for Candida in the past so he wants me to go off the abx for awhile to see if I feel any better.. He really doesn’t know what to do with me.. I asked him if he thinks my RA is from Lyme and he said he didn’t know.. I mentioned to him how I question my way of treatment (just being honest with him) and he said I was free to go elsewhere..

I told him that’s not what I wanted.. That I was just nervous because of how I felt. He said I can go to a rheumy who would hit me w/ steroids etc (which I know already) and I told him I didn’t want that, that’s why I was with him..

I dunno.. I guess we will see what happens..

[Krys]

@tbird2340 wrote:

One thing we are going to try is to go off all abx … go hardcore gluten free …
I tested positive for Candida in the past so he wants me to go off the abx for awhile to see if I feel any better..

I dunno.. I guess we will see what happens..

Tom, would your LLMD be willing to prescribe Fluconazole or any other anti-fungal while you are off abx?
I view Candida as a major demon. 😈 😈
While it is out of hand, will power does not seem to exist. One applies all the will power one can muster, and even more, and then after 1-2 weeks of staying clean, one’s hand just reaches for gluten and it seems to have a will of its own, kind of like insanity. Or there is a complete temporary amnesia: you see bread and you may even vaguely remember that you are not supposed to eat it, but your mind very strongly and convincingly prompts: “what utter nonsense!!!” and the hand reaches for it ….It soon gets out of hand, you keep cheating, paying horrible price, feeling utterly discouraged, thinking there is no way out for you…..
Another thing: diet does not kill Candida, even a 2 year long diet. It only lowers its numbers. Once you break the diet, Candida immediately multiplies again and takes over.
Staying on Diflucan (generic: Fluconazole) makes diet easy. You stop craving gluten, or at least your craving is manageable. And you start noticing the results of the diet quite soon. One needs to increase probiotics even more while on anti-fungal. Saccharomyces boullardi, while not colonizing the gut, binds to Candida and is very helpful in addition to other probiotics.
Detox is a must with Candida die-off or you may end up feeling even more crappy during the initial intense die-off.

I’m not a doc, am not supposed to prescribe, so, sorry if it looks like I am! 😳
If it had been me, I would ask my doc if he could fax the prescription for Fluconazole to my pharmacy. Nystain may not do it: it only works on Candida in the gut, not outside of the gut. Can be combined with Fluconazole, but on its own, with systemic Candida, will not be enough.
The above is based on my reading and my own 😈 experience.
Hope you’ll find a solution that works, Krys

[tbird2340]

Thanks Krys..

I’m taking Amazon A-F so I’m not sure if that will be enough or if I’ll need to add that rx you mentioned..

What’s strange, and really bothers me.. Is that my doc increased my Ibuprofen from 800mg 2x a day to 3x a day. He also asked me if I wanted him to add a narcodic, which I said yes (don’t want to but need some pain relief!)

So he prescribed hydrocodone to take 4x a day along with the Ibuprofen.. Now, that is the only new thing I’ve added (so far, still need to order the supplements he told me to).. I added them on Wednesday and stopped the ABX on Wednesday.. Other than that, I’m pretty much on the same stuff (Amazon A-F and Ibuprofen)..

The last two days it seems like I’m WORSE in the morning.. I dont’ know how that can be with MORE pain meds than before but alas, it is.. Could the hydrocodone be causing a herx?

[tbird2340]

I just checked my bloodwork from 9/12..

Anti-CCP (Normal < 5)
5/04/10 – 527.5
2/18/11 – 454.9
8/01/11 – 367.8
4/30/12 – 354
9/12/12 – 284

RF (Normal < 14)
5/04/10 – 34.4
2/18/11 – 41
8/01/11 – 45.5
4/30/12 – 36
9/12/12 – 48

My sed rate was 29 which is usually in the normal range (0-15).. So my Anti-CCP dropped another 70 points yet I feel like crap.. 😆

[Krys]

Tom, I’m revoking my recommendations of anti-fungal at this point. You cannot afford any additional herx and wash-out alone may bring much new insight into what is going on within you.
I really think you should voice your concerns in a separate thread so that it is noticed and addressed by those who are really experienced with AP.
Could you please start a new thread and maybe include more precise information, like:
– What abx you’ve been on, what dosage, how long.
– List all the supplements and dosages you are taking.
– What hurts, where, how intensely. Has your pain level been the same all the time, has it changed, has anything changed?
– What symptoms have you been experiencing beside pain?
– How do you sleep?
– What is your diet, what do you mean by occassionally cheat.
– Any Candida symptoms, eczema, athlete’s foot, very dry itchy skin?
– Have you done any detox at all? If yes, what, how often, did it help.

Your dosage on minocycline was so unusual and so huge, what if it is DILE? Maz’s signature line describes in detail what it is like, how one can confirm it, how soon it disappears after stopping minocycline. Phil can help you more with the abx and supps side. His knowledge is impressive! There are many really experienced RBFers but they have to see your post in order to answer. Many people check the new threads just in the beginning and do not follow them again later. Your post may be easily missed by those who have knowledge to help but reread only the posts where they contribute.
Krys

Dotsdaughter, so sorry I cannot contribute at all to your thread. I am not good at all with any tests results. Hope yours will improve soon. Krys

[lynnie_sydney]

Here is some good information about why ccp can be more useful than RF in tests when a diagnosis is being made.

http://www.labtestsonline.org.au/understanding/analytes/ccp/tab/test

In Australia, anti-ccp is relatively recent in terms of lab tests ordered. In my case, my RF has been taken from the beginning and is probably more useful as an indicator as to what’s happening. At its highest mine was 700 and is now under 200. Anti-ccp has only just been taken. It is 500, which seems high, but I have nothing to compare it with so that number is not particularly useful for me.

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)

[tbird2340]

Here you go Krys.. Thanks

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