C Reactive Protein – should I be worried?

[Lizz]

Hi to All – I'm pulsing mino now 11 months M,W,F. My anti-CCP is rising (herxing?) that doesn't bother me but the CRP of 9 does. :doh:Do any of your guys worry also, or is this all just part of the roadback? I had searched on the old board last year and read that someone was using an enzyme called niprenol and was having success with it. However it is very expensive, so I hesitate. What if anything to do about it, or should I just try to relax???

[Dena]

My C-reactive protein was high before starting AP, then in about a year it returned to normal and has stayed there for the last 8 years.  Sometimes, I think that less is more–don't add meds, subtract as something you are doing could be causing the problem.  I'm no doctor, although the family calls me one as I often get the diagnosis right before we hear from the doctor:D

When I recently has the RF spike, instead of going to more meds, I backed off everything for a week and realized that it was Boniva that was the likely problem.  I'm feeling better already and will have blood work done again in 3 months to see if RF is back down.

So, I suggest waiting before going on something else and get tested again.  Let us know how you are doing.

[Lizz]

Thanks Dena, I just worry because I still have kids at home, I need to work, too. I'll probably hold off other meds,etc. till the next bloodwork..

[Dena]

Don't panic.  Keep Henry Scammel's book handy for reference.  It was a year on AP before my symptoms subsided to the toleration level and my blood tests started improving.  I've been on AP for 9 years. There are ups and downs, flares and calmer periods.  It's been a long time since I have done this (with my doctor's blessing, I might add) but when the pain got so bad and a darvocet wouldn't kill it, I added a rum and coke and that worked.  Of course, you can't work with that combination, but at night sometimes . . . 

 I also find that if I am lying down and feel terrible, I often feel better if I get up and move around.  Keep moving and changing position often.  I am fortunate to live in the Virgin Islands, so I have, over the years, gradually regained the ability to raise my arms without lifting them one at a time (yes it was horrible before AP) by doing my range of motion exercises at one of our beautiful beaches.  Salt water is great because of the buoyancy.  I run in place in the water, do leg and arm stretches and walk the beach.  The sand feels good on the toes and feet when it is not a deep, dry sand. 

Hang in there. How old are your children?

[Lizz]

Rum and coke sure sounds good! I had a beer before bed the other night and come to think of it I slept pretty well.. My kids are not little..I feel for those out there with little ones, mine are middle and high school and one away at college. I need to exercise more but I do stretch as tolerated.. Thanks Dena for the support!

[Maz]

[user=48]Lizz[/user] wrote:

Hi to All – I'm pulsing mino now 11 months M,W,F. My anti-CCP is rising (herxing?) that doesn't bother me but the CRP of 9 does. :doh:Do any of your guys worry also, or is this all just part of the roadback? I had searched on the old board last year and read that someone was using an enzyme called niprenol and was having success with it. However it is very expensive, so I hesitate. What if anything to do about it, or should I just try to relax???

Hi Lizz,

At my worst, my cardio CRP was 44 and, at last reading a few weeks ago, is now at 12. It was steadily coming down for me on abx therapy until the Fall (to 7), but has been wavering between 9 and 15 since.  During the Fall, I was on a particular Lyme protocol that was intended to elicit greater herxing and this caused worsening of symptoms, some huge backward steps, along with higher inflammation numbers. During that period, I lost previous ground with cardio-CRP, as well as the benefit gained from using Neprinol, so I gave up my mini experiment with this supplement at that time. Until that point, however, it did seem to be helping.

Neprinol is basically a combination of nattokinase and serrapeptase (as well as COQ10), proteolytic digestive enzymes and are believed to help reduce inflammation – but, as you say, this particular brand is very expensive! Now that my herxing is a little more controlled, I've been contemplating resuming these two supplements, but will probably choose a much cheaper brand this time. Vitacost online sells both supplements separately under the brand name, Doctor's Best, at a fraction of the cost. 

Dena's suggestion to wait for a bit isn't a bad idea. It may just be a temporary glitch that will resolve on its own if you're going through a period of herxing. If you are really concerned, however, and it would help you to know you are trying something to bring this number down (and not worried about spending the money), then having a go with these supplements, even as a temporary experiment, probably wouldn't hurt and may actually help. There are no guarantees with any supplement, though, and it's all trial and error.

Peace, Maz

[Lizz]

Hi Maz, thanks to you and Dena. With AP, everythings a variable, including how we dose, supplement and most importantly, how we FEEL!! I'm going to wait for the next bloodwork , which will be in a couple of months, and then if it's still uncomfortably high, try the neprinol. I really never know if I'm herxing; I went from daily to pulse dosing in hopes of figuring it out, but for the life of me I can't. I really appreciate all the help and support I receive on this board!

[Goodwife]

My hubby's CRP was elevated for q uite some time.  Our naturopathic doc kept him on large daily doses of omega 3 ( for the inflammation),  At last bloodwork (about  month ago) his CRP was normal!!  First time in a year.  We were thrilled.  Still taking omega 3, but not as high a dose daily.  Every time it was high, it was flagged for 'possible cardiac event' – which scared us!  Good Luck!

[Author]

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