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Well, I've just passed the most stressful event of the month (apart from running the gauntlet of the rheumy….) – getting my monthly blood results back !
Spoke to the nurse at lunchtime & she said 'Oh everything is elevated – you'll be receiving a letter' :crying: So I thought – OK tell me the worst –
Me : 'Can you tell me what the levels are please ?'
Nurse : 'Well, CRP is 22 & RF is 117 – normal is below 40'
Me : 'What about the ESR ?'
Nurse '28'
I just read these back to her to check for sure I hadn't mis-heard, before putting down the phone and whooping with excitement to hubby upstairs :roll-laugh:, and I've been on cloud 9 ever since.
In fact – she just meant they were all elevated above the normal ranges, but for me they are all coming DOWN. Nothing has gone up since the rebound from the cortisone shot last October, just a steady down, down, down.
There is a way to go yet of course – I'm not down to normal ranges yet – but definitely on the way !
I was most pleased about the RF, because people say not to bother re-testing that as it's only used as a diagnostic. And I'm sure I've read on here that it's not expected to come down, but AP does bring it down. It was 325 when last tested in August, so that's quite a drop isn't it ?
If I was ever skeptical about AP I'm sorry 😉 – but I'll be just as scared next month I bet !
Decided it's time to start my personal history, and I'm about 1/2 way through it so far as it goes back over a year now.
Blessings to everyone, especially those struggling at the moment. Hang in there.
Katie 😀
Katie, that is a fantastic drop in your RF!!!! WOW! I don't remember your CRP or ESR levels from before, but I seem to remember they were a lot higher.
Good on yer, girl!!!! You're a Dr Brown textbook case, all in all…initial worsening and then the old three step fwd, two step back dance all the way. Don't be discouraged if you have those backstepping days or if your bloodwork fluctuates some. Over time, the backsteps lessen in severity and are much shorter and with bloodwork it's the longterm trend you want to be looking at now.
As I'm a pulser, I still have herxes once or twice a month, but just lately I've noticed these are looking a lot like where my Lyme actually began….no more constant RA pain…this is different and more like the palindromic pains of Lyme. Certainly nowhere near the intensity at the beginning…just phantom-like in nature and passing within hours. I don't think the bugs have anywhere to hide anymore and they're just running around and making a last stand! :roll-laugh:
This is such terrific news, Katie, and you just made my day! Cheers!
Peace, Maz
Thanks Tbird & Maz ! Yes I think I am still herxing about once a week – not always on the same day – since Dr H put my dose up to 100mg M-F in November – but most of the bloodwork improvement has also come about since then. I generally seem to feel that after a herx I feel better than I did before it.
I usually reckon it's a herx if I seem to ache everywhere, and in muscles as well as joints. And usually doesn't last more than 24 hrs.
Fantastic to hear you're only experiencing on & off type pains these days ! You certainly deserve to do well yourself, with all the encouagement you give to the rest of us !
Have a great weekend ! (well the weekend starts right now in the UK !)
Katie 😀
I forgot to say – Oct was CRP 71, ESR 35, (highest)
Nov CRP 39, ESR 35,
Dec CRP 39, ESR 29,
Jan CRP 22, ESR 28.Katie
Congrats Katie, I knew they would be down, don't you go overdo that trekking this weekend in celebration :roll-laugh:. that is really great news for you, well done. I know exactly how you feel as when I got my blood result and they were down, I wanted to shout out to the world.
I know you will have a great week-end now……………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.Fantastic Katie – no wonder you're whooping with joy!:roll-laugh:
It is hard to accept the 'worse before better' component of this and this is when alot people lose heart. So glad that you gave the gift to yourself of seeing Dr H. Even so, it must have been hard (I KNOW how hard in the conservative U.K.) to hold your ground against the tide of conventional opinion. You so deserve to be reaping the rewards. Looking forward to your Personal History thread (and eventually a testimonial!!). You will be a beacon of light to others in the U.K. 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)Good for you!!! Thanks for posting, it's very encouraging and helpful to hear of another success. Woohoo!
[user=467]katieb[/user] wrote:
I generally seem to feel that after a herx I feel better than I did before it.
I usually reckon it's a herx if I seem to ache everywhere, and in muscles as well as joints. And usually doesn't last more than 24 hrs.
Katie, that is pretty much exactly what I experienced when herxing….and still do. After a herx, I'd always feel as if I'd moved ahead a bit in progress. Then the process would repeat again….herx (worry and despair) and then all the symptoms would disappear as if nothing had happened very quickly and I'd improved again….the 3 step forward, two step back dance all the way.
The way you're jotting down your results like this from month to month is the perfect way to view the longterm trend in your improvement. Some numbers get stuck for a bit, then suddenly jump forward or back…but it's what happens over the course of a few months that counts. To have your CRP go from 71 to 22 in 4 short months is also pretty incredible! And look at that ESR…sticking for two months at a time, but then jumping forward and sticking again for two months. That sort of thing can be a little unnerving, but when you look back after 6 months, you'll be amazed at how much it's improved overall. 😕
Katie, you get the dudette icon for sticking in there through the inevitable doubt we all experience when we start out and making it out the other side! :dude:
Woohoo!
Peace, Maz
Hi All,
Many, many thanks for all your lovely responses.
You know, everything does still hurt quite a lot, but I've certainly got more strength eg can now use the garlic crusher again !!
So no way am I quitting now !
No trekking this weekend – going to watch the dog agility (indoors !) – but we have to be there at 8am and it's an hour's drive, so gotta go now…….:shock:
Be well ! :roll-laugh:
Katie
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