Anti-CCP | Arthritis Information

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Does everyone with RA have a positive result in the Anti-CCP test?  Or can it be negative as with RF?

No, it can be negative as well.

From the American College of Rheumatology:

In general, the sensitivity of anti-CCP has been comparable to RF (50-75%) with a higher specificity (90-95%).

Thanks KweenB...one more q...would being pretty well contolled with biologics alter the results of either or both RF and anti-CCP?

Gosh, don't know the answer to that one.  Maybe someone else does.  I'm not on a biologic.  My RD has never retested my RF or Anti-CCP either.

I can tell you that I remember a woman who was on antibiotic protocol that commented her RF was declining the longer she was on that treatment.

Not sure if that helps any.

kweenb39378.4764236111Yeah, I thought I read that somewhere too.  Thanks for answering!I think I remember reading somewhere that effective treatment can lower RF levels but anti-CCP generally stays the same......I'll see if I can find the article. Thank you Nancy

Results: At baseline and week 30 RF titres were reduced significantly during infliximab treatment (p<0.001 and p = 0.038, respectively), whereas anti-CCP antibodies were unchanged (p = 0.240). Baseline IgM RF titres, but not anti-CCP antibodies, correlated inversely with changes in CRP and ESR during treatment. Patients with a marked decrease in acute phase reactants had lower IgM RF titres than those with a smaller decrease in CRP and ESR; no significant differences were found for anti-CCP antibodies

Here's the link:

http://ard.bmj.com/cgi/content/abstract/64/2/299

That answer's my question.  Thanks for finding that info

My RF was 706 at the start of AP.  My CCP was 0.  I had thought it was because of my PRA diagnosis - but other PRA peeps have positive CCP's and negligible (spelling?) RF's. 

When you start AP your disease 'becomes unstable'.  This translates as your labs can jump.  If you think about it, it makes sense.  Herxing can be increased inflammation that you're processing out of your body when you're kicking the microbes out.  When my PRA became unstable my CCP went positive.  I don't remember how much, but only a little.  To me that meant "OMG, I'm really RA!!!!!!" 

Ap docs pull labs all the time to mark your progress towards remission.  All my RA labs are now normal again (CCP included) except the darn RF which is hovering at 260.  My doc added Zith to my regime to hit the strep titers (were sneaking up) but I only started today as I had a serious insurance problem and just got the meds this weekend. 

So, I don't know why the CCP wouldn't drop on the biologics.  It does on AP.

Pip

here's a q Pip.  Does the theory behind AP hold that RA is always due to an infection, (I think a virus)?  And if yes then why doesn't AP work for everyone? I read somewhere today that it has it's best results for people with mild to moderate RA.

Also, is it ever considered amongst RD's that maybe seronegative RA is really not RA at all but just something that looks like it?  I don't understand why some would be positive and some would be negative if we all have the same disease.

Linncn39378.5796064815

WARNING: Controversial response - read at your own risk!  LOL

Yes, AP says RA is pretty much always an infection.  The RB and even my AP doc says it doesn't work for everybody.

I'm not sure I agree.  Here's my reasoning. 

Mycoplasma are kind of a split between a bacteria and a virus.  They are CWD (cell wall deficient) critters. 

Supposedly, ABX don't work on viruses - but if you read the RB, most people post that they get less colds and flu's on AP.  How is that possible?  "Group think" only covers so much. 

Supposedly, we all have hyperactive immunesystems and our bodies get confused and attack it's joints (or whatever AI disease system we have -> MS; nerves etc.)  But while a good portion of people post that they were hardly sick prior to RA there is another large percentage that post that they were ALWAYS sick prior to AP.  I think this has something to do with how well/fast we heal on AP.  But it's not the definitive answer.  Karin was a 'never sick' and AP worked for her.  I am a 'always sick' and AP worked for me.  So, you'd think I had more 'viruses' running around my innate immune system. 

If you go to www.rheumaticsupport.net (.org? .com?) and read their patient testmonials in order, one after another, you get a decidedly jaundiced view of MD's.  There are posts of MD's prescribing super doses of ABX (400 mgs. a day, enough to drop an elephant-type of herx).  I've seen posts of MD's who prescribe for 3 months and as the patient is herxing (normal) saying, "well, we tried, but the flare is too much" and the patient quits never knowing it really was working and they were taking too much too soon.  So, in my opinion a lot of blame can be laid squarely at the feet of the MD's. 

But this summer I saw one of my AP docs and somehow we got on this.  I can't remember how the convo started but there was a point that the doc looked at me with pain in his eyes and said.  "By the time they see me, they're a wreck.  The infection is out of control because they've been on all the suppressents.  It takes a lot to bring them back, and it's inch by inch and it's long and tedious and sometimes very painful  (paraphrasing here -sorry) and it hit me - he thinks when it fails it's the patients fault and it they hang on it can work.  Am I reading minds?  Possibly.  But you should have seen his eyes.  This hurt him.  He wanted them to heal. 

I do know of people that skip their ABX and wonder why the Minocin isn't working.  It's called non-compliance in medical terms. 

So, on the RB or places like AI, if an APer hits a snag we tend to jump in with suggestions on tweaking the protocol - then get told we're "blaming the victim'.  I don't think that's fair - doc's tweak their treatments all the time.  We're not docs - but the point is to get down to the least amount of meds to control this disease.  If the whole lemon/olive oil drink will cut your herx - why shouldn't I suggest it - especially if it helps you to keep going on the protocol and heal? 

So, the slow responders have options.  They can try different ABX.  I've seen the M. Kielbasa (spelling) with AS heals better on one of the penicilans.  I need that for my m. strep infection. 

And why nobody in America is looking at courses in antivirals as a jump start mechanism, I have no idea.

Also, some people don't do well until they do the IV's.  But if a person gives up too soon, they may not get to that point.  Others start with IV's.  It depends on the body and what a person can handle.

They've done the studies (limited as they are) on mild to moderate.  I was 'early onset severe'.  It worked and well.  I think Karin was also.  It worked for her.  Again, how much time is a person willing to invest in this?  Me - I was willing to give it 1 year to show me it was working.  I hit the AP lotto - my first "ah-ha" moment came in only 2 1/2 weeks.  It's pretty easy to keep going when you focus on that "ah-ha".

Pip

P.S.  The sero-negative and positive?  MHO - the tests we have now are garbage.  I think it's still an AI disease and probably RA.  What we need are better and more difinitive tests.  We're practically stone-age in how long some of these tests have been around.

 

 

My daughter is negative for RF and anti-ccp. Her dx is severe juvenile rheumatoid arthritis, and she has responded to AP.

It took some effort to get her on AP - she is too young for Minocycline, which is an approved DMARD by the ACR, and also has a very long track record as an acne med. She had to do Zithromax, and there are not many studies on its longterm, low dose use (also not many studies on other RA meds for young children, unfortunately).

That brings me to my question - I really don't understand why more people don't try adding mino to their mix. It isn't contraindicated with other RA meds, so you don't give anything up. What is there to lose, I always wonder. It seems like lots of other meds are piled on and on.

Linncn - I don't think everybody has the same disease. RA/JRA is "a diagnosis of exclusion", what the rheums are left with after ruling everything else out. If everybody had the same thing, the treatments would work a lot better, I think.

I wonder that too, Suzanne.  Why not take the RA meds together with AP.  Then the dmards and bios can keep things in check while the abx do what they do.  Pip?

Because the biologics are lowering your bodies response to an infection.  You are in pain, inflammed, joints eroding as the body is trying to fight something.  In treating the symptom (inflammation etc.) with biologics, you're not feeling the pain etc. but the underlying problem is still there.  You just don't feel is as much as the med is doing it's job.  Think of a cold.  You have a bad one.  You can take all the Tylenol you want; but you still have a cold.

Minocin is trying to get at something but can be thwarted by that same inflammation.  Some new-fangled AP docs use biologics to cut the inflammation until the Mino can reach it's target and start working. 

But the two meds together cancel each other out.  At most you have a holding pattern.  Less pain from the biologic and less microbe killing from the suppressant. 

That's not to say a biologic doesn't have it's place.  It does.  But the goal should be to wean off.  And I have no idea how that would be done.  I don't even know most biologics are administered but I'm thinking shots from posts here.  So, what would a person do?  Work towards longer and longer periods between shots?

Another thing, on AP some of these baddies 'reactivate' for want of a better term.  Hence my pneumonia herx.  Don't they take you off biologics when you get an infection?  If they take you off, why go back on.  Me?  I'd make a bee line for the nearest doc who'd do IV's.  Slash and burn!  That's my motto!

I think I may have misunderstood the original question and I'm not erasing!  LOL 

With things like Plaq and MTX, I think it's very possible to wean off.  Don't those mostly come in milligram tabs?  Just every time you can, lower the dose.  Slow and steady wins the race.  But it definitely is a much slower process. 

Did I get everything?

Pip

Yes, thanks for taking the time to write all that.  It certainly is an interesting topic.

[QUOTE=Linncn]Yes, thanks for taking the time to write all that.  It certainly is an interesting topic.[/QUOTE]

Hey!  I just found the quote button!  Does this make the cute little box?

Pip

Edited to say "yes it does!"  I've been trying to figure that out forever!

Pip!39378.7662962963I guess we both learned our new thing for the dayLinncn - Pip is an all-or-nothing warrior LOL. You can do both, and people do, with the goal of tapering traditional meds faster. 'Kill the bugs, not the patient' is often stated. Some people have too much pain and/or inflammation to start AP alone cold turkey.

My daughter does AP only, but she has never had pain since her first antibiotic treatment. In the beginning, our AP dr. said do mtx, too, because she cannot wait. We did, but she got so sick on it we had to stop. She has had a great year on AP alone.

Pip is right (as always LOL), but not everybody can do it like that. I wouldn't let 'all-or-nothing' thinking stop me from trying it. That is the point I was trying to make. [QUOTE=Pip!]
I don't even know most biologics are administered but I'm thinking shots from posts here. So, what would a person do? Work towards longer and longer periods between shots?




Yes, I have seen posts on RB to that effect. Less dose per injection, or more time in between. Hey, my 'quote' button didn't make a box!

[QUOTE=Suzanne]Hey, my 'quote' button didn't make a box![/QUOTE]

I think you highlight the stuff you like and hit the quote button.  It puts it in the post reply box.

Pip

I was reading an article from Johns Hopkins about AP last night.  It said that in the past their was a lot of excitement about AP but with the biologics comong along, it kind of killed the buzz.  BUT it also said that although their is some degree of improvement as far as pain and inflammation go with minocycline, that antibiotic had some antiinflammatory and tnf blocking (I might be remembering the tnf one wrong) properties and that's why it works, there is nothing to suggest it is due to ridding the body of microbes.  I am interested in how AP believers respond to that.

Please keep in mind that I am NOT starting an argument, I am merely trying to check out both sides so I can make an informed, intelligent decision.

All I know is that I went back for my second post-starting Plaquenil field vision exam, the medical opthamologist got all excited when I said I was on Minocin - "good for the eyes".  And my eyesight has improved, so for now I am staying on the minocin, and first of all weaning off my pain meds.  Nothing has convinced me to stop MTX as I felt it working too.  Justsay....it's you whose doc said he'd agree to AP as long as you would continue with MTX??  I knew I talked to someone who said that, I couldn't remember who it was

I knew he would say noe, so I asked my family practitioner, whom I started with about six months ago, and is finally helping me.  Her attitude was, you are 51, suffering, who cares if you get antibiotic intolerant.  I really like her attitude.

Two months later I went to my 3-month rheumy appt and he went NUTS when I told him, muttering about how he needs to be kept informed when changes to his part of my body are changed.  I knew he would never agree.  If I had acne however ...

He asked me if it had helped me, and I said that yes, after six weeks it finally healed the bleeding nose ulcers I had been given an ointment for the past five years. 

So, at the end of the appointment he said to continue with the Minocin.  He also found out she had diagnosed osteoporosis, which I guess is under his watch, but he never tested for it, and he agreed to switch my osteo medication and monitor it.  First pro-active thing out of him in 16 months.  And he ordered up special blood work and Vitamin D testing in two months.  Wow, what a concept, more testing to try to pin this puppy down.  No "you can come back in two or three months, I don't care" commment at the end of that appointment. 

But I had gone sero-positive again, my SED/ESR was again up slightly over the high norm, and my anemia numbers moved down slightly out of the low norm.  It's been much worse.  That's why I won't wean or quit the MTX yet. 

I am feeling better, as I don't feel sick anymore, but it's still having a party in my body.  Definitely pain, inflammation, and coldness in my hands at times, but overall improve in those areas too.  I will settle for just not feeling sick anymore.

Cathy 

Cathy, well I'm glad your doc took a lead from your GP.  At least his pride didn't get in the way of continuing and supporting with something that's working.

Here's another q about AP....is it thought that a specific "bug" is causing RA?  Or do they think it could be just one of many and that's why people react differently? I noticed Pip was talking about strep and pnumonia.

Well, the topic is Anti-CCP I believe, so I am disclosing that I am not hijacking this thread, as I am answering questions put to me.  Thank you.

It's called a "mycoplasma", a "germ" trying to gain parity with bacterias, viruses, and other infections approved of by the AMA.  The American College of Rheumatologists gave minocin and I believe doxysomethingoranother parity as a DMARDS for rheumatic conditions in 1997.  I posted something about mycoplasmas over in Odds and Ends I think, a long time ago, from my alt health healer, then I discovered antibiotic protocol via the APers in here. 

If I didn't get this right, would an APer PM me?  Thanks Cathy

Back to our regular programming, Anti-CCP

Thanks Cathy.  So if I understand you correctly, it isn't a specific germ.  Ya know what...I have to find out what mycoplasma is instead of continung to bug you guys.

I'm a weaner, and you can quote me on that!

Linncn, The immunesuppressant qualities of Minocin have been long known and are actually discussed in The New Arthritis Breakthrough. Most people believe that the Minocin works both ways, immunesuppressant AND mycoplasma fight force! Generally, it's theorised that the Harvard Protocol (daily doses) work mostly because of immune suppression, and the Brown Protocol (pulsing doses MWF---that's what I'm on) work more for their effect on mycoplasma (I can't say it kills mycoplasma because it doesn't. What it does do is prevent mycoplasma from reproducing and also it lures it out from where it's hiding---usually body tissue, synovium, and white blood cells---so your immune system can get at it, which is what it's been trying to do the whole time, or so the theory goes).

If Minocin only worked because of its immune suppressing qualities, then other tetracycline antibiotis such as doxycycline, zithromax, and flagyl wouldn't, since they have no immune suppressant qualities, but these drugs are also effective in treating RA, so there HAS to be some mechanism other than immune suppression at work.

There are over 100 types of mycoplasma (This whole paragraph is proven science and not theoretical). Mycoplasma have no cell walls and can live inside other cells and tissue in your body. They are kind of camoflaged and very hard to see even under very powerful microscopes. People get mycoplasma infections when they become infected with strep throat, c. pneumonia, or some other infection I can't remember. The Streppoccocal bacteria have little L-form offspring that are the mycoplasma. They look nothing like the mother bacteria, and remain even after the mother bacteria has been eradicated from the body through medical or natural means. Mycoplasma are shape shifters that take on different characteristics over their life, can reproduce independantly from the mother bacteria, and become invisible and revisable again. Mycoplasmas have been isolated from synovial tissue in people with RA. Not all people with mycoplasma infection develop AI diseases. Women generally have 4 times as many mycoplasma in their system as men.

This part gets back into theory: The mycoplasma live in the joints and ride around the body inside the white blood cells. At some point they reach a critical mass, (and perhaps send out puffs of waste product from areas with high densities of mycoplasma) activating an allergic response in the host. The immune system then tries to attack the source of the irritant, the mycoplasma, but since they're actually inside the cells of the host tissue it appears the immune system is attacking the bodies own tissue.

I hope that answers some questions, 'cause I gotta go to an appointment now!
Gimpy-a-gogo39379.4710069444Yeah, it does answer a lot.  Thanks Gimpy.  Hope your appointment goes well, whatever it's for.

Strep is one hard to kill mother!  It has 3 'phases' and can 'reactivate' at any time.  Kind of like a ticking time bomb waiting for the right reason to go off.  There's the 'you have strep and we can see it on the microscope at the doc's office" and 2 'back-up' that look completely different and nobody knew what it was.  At one point they just thought is was some sort of 'waste' from the strep they could see.  It took a while for them to say 'uh, different form of the same bugger'. 

I went to a 'chat' a bit ago at www.rheumaticsupport.net (THERE'S A NEW ONE THURSDAY AT 8PM EST but I need to verify the time isn't 9) and the doc there told some people to just start the ABX even tho they tested negative.  Kind of blew me away.  His point was the tests are very innacurate and you know if there is something wrong with you.  But I understand what he's talking about.  I tested positive for strep but negative for c. pneumonia - and I knew I'd been exposed to that multiple times in the past as I'm a stupid smoker and I get pneumonia regularly.  The running joke is, "take a vial of blood and hope one of the buggers swims in."

The myco tests are hard to get; most times you have to go to a specialty lab to have the blood drawn.  Even the Great U didn't run those tests and had no idea what I was talking about.  The only real benefit in getting the tests is that insurance companies will cover IV treatment for an 'infection'.  If you don't have a positive test you have to pay for the IV's yourself. 

Anyhow - Dr. Brown said there were 3 myco's that were the most common.  C. Pneumonia, Strep, and I can never remember the 3rd one.  There are others like C. Kielbasa (spelling???).  That one has an affinity for the spine. 

Dr. Brown said there were 'splitters' and 'lumpers' in medicine.  Splitters thought that RA was different from Lupus which is different from AS which is different from Scleroderma.  Dr. Brown was a 'lumper' - an AI disease is an AI disease - caused by a microscopic infection.  It took me a long time to come to that decision.  Just different manifestations of the same infection.  I mean, how can Type 1 diabetes be the same thing - until I found research on 'inflammation' in the pancreas and how some natural antibiotics allow the body to start producing insulin again AND no longer be insulin resistant.  I mean, as far as I can tell (great MD that I am :-) this is ALL related. 

My theory is somehow these microbes disable the body in some way in the beginning of the disease process.  To me, it looks like it's usually something to do with the thyroid, the pancreas, or the gut.  After that part is somehow disabled, whatever your weakest gene is, is the one that kicks on first.  For me, it was my PRA.  For my hubby, it was Type 2 diabetes.   I think that's why we get more than one of these diseases.  It's like one system after another going down as the infection spreads. 

Did I babble again?  Or did I actually hit the question. 

Pip

P.S.  Cathy - if I were a betting girl, it's the Mino that's messing up the anemia.  Your disease has 'become unstable'.  Your labs will start going up and down as the Mino is working.  I think of it as a 'skirmish' between the beasties and the ABX.  When you are 'in remission' your labs will be normal.  To be on the safe side, go search the RB about it for advice on bring it back up quickly.  I've seen a lot of posts about that - it's a common 'herx'.

Ok.  Unless I'm totally misunderstanding, according to the Infection theory, how is RA and the like even considered to be dieases of the immune system? It would seem to me that it is doing it's job just as it's supposed to, the problem really being that what they are attacking has gone unseen.

That's the point!  :-)

The infection model of these diseases say we're attacking microbes.  The auto-immune theory says the body is attacking itself for no apparent reason. 

Up until the invention of cortisone, the only working theory was the infection mode.  Now we're coming back in vogue!

Pip

And I had Scarlet Fever at age 3, which is strep. 

Please feel free to tell me to shut up and read the book if this becomes a nuisance

Q  Wouldn't taking immune suppressants allow these bacteria to just go nuts?  I've enjoyed a very strong immune system throughout my life.   I rarely get sick.  Maybe a cold every few years.  So what about that?  Is this mycroplasm new to my body and it's just too tough to fight off, or has it been floating around for years and only now made an appearance?  I know many people had an infection that they believe triggered their RA, but I had nothing like that at all.  I honestly can't even remember the last time  was sick.

I was at my first TCM appointment. I really liked it, and my TCMP is really funky. She talked to me about JMT, TAT and said her friends say she's the queen of TLA (three letter acronyms). She also did a little EPD and explained how the people who developed it believed RA is an actual infection or invasion of foreign bacterias, so I kind of had to laugh considering that's hardly a new concept to me.

Pip, are you saying that the new truth is mycoplasma's are really streppoccocal bacteria in a different part of their life cycle?

It's true there's more than 3 kinds of mycoplasma infection; I remember there's an old historical chart on the Road Back that was part of the original Brown Protocol, showing the different strains of mycoplasma implicated in RA and which drugs worked on which strains. MInocycline is not mentioned because it hadn't been invented yet. I don't know if this will actually make sense to anyone, but here it is:

  drugs found: Waites, Cassell, Canupp, Fernandes, In Vitro Susceptibilities of Mycoplasmas and Ureaplasmas of New Macrolides and Aryl-Fluoroquniolones, Antimicrobial Agents and
Gimpy-a-gogo39379.6608796296Lnncn, yes, that's the theory: that immunesuppressing drugs, while suppressing the symptoms, are actually allowing the infection to run rampant and that's why eventually all immunesuppressant drugs stop working and the disease comes back worse than before the drug therapy was started. [QUOTE=Linncn] Wouldn't taking immune suppressants allow these bacteria to just go nuts?


I think that is why immune suppression is like a 'ladder' for so many. Mtx until it fails, then Enbrel until it fails, then Humira, blah blah blah. They hold the disease down to a point, for awhile, then it takes more to get the same effect.

Linncn, I think it depends on your exposure rate.  I didn't understand how sick I have been for so long until recently, but thought I was healthy?  This seems to kinda sneak up on some of us, others are just BAM.  Don't know why.  Well, mycoplasma reproduce very slowly. Dr Brown's theory was that they
can lurk in your body for years before they reach a critical mass, and then
some other factor happens which lowers the immune system (illness, bad
dental work, stress), and then the disease gets the upper hand. For some
people it just takes over like fire and other people have a kind of creeper
thing. Mine creeped for about a year and then I had "sudden onset".So, I'm curious...how do you explain the people who have been on immune supressants for long periods of time and are doing well? Why haven't the drugs stopped working for them? Sarah, who has used Enbrel for almost 9 years, my sister-in-law who has taken MTX for 16 years and I also know numerous others who are also doing quite well on their long term meds for RA. Are they anomalies?

Lynn Lynn4939379.6810416667Lynn, I asked my RD (who does not at all subscribe to AP) if all conventional RA drugs will eventually stop working and she said "Yes. They will all eventually stop working." So I hate to say it, but I can only say perhaps they haven't stopped working yet.  No, there is remission under any drug scenario.  If someone is responding to something they should continue.  But if it isn't working for them, it's up to each of us to make our own health decisions.  I am the one who has deal with my own consequences. 

Gimpy, did you ask her why she thinks they all stop working?  I'd be really curious to hear the opposition as to why they discount the theory of infection causing RA. 

Ya know, even though I had no sickness, no unusual stress or anything like that before I got slammed, their were several months that I was so insanely tired I was thinking their must be something wrong with me.  I mean, I would have to sleep in my car in the parking lot for an hour or so before I could get up the energy to actually go in and work for 3 hours.  Now I think that was the real beginning of RA.

Linncn, no, I didn't ask her, but that's a good question. I think I'll ask her when I see her in December.

She's not an advocate of AP but she has several patients on it and she says it's made her a lot more open minded.

Linncn Linncn, I would like to mention that while you're more than welcome to question away here on the board, a lot of these questions are answered in The New Arthritis Breakthrough (probably available at your local library)...plus there was a whole book devoted to your last question (Why Arthritis by David Cantor---but it's not a very easy read, unlike The New Arthritis Breakthough). There was a sort of veering off in the '50's when cortisone was discovered and it sort of morphed into an institutionalised rejection of the infection theory which is only recently seeing a revivavl as new studies reveal more and more support of it.I raged over it at first but now I think I have more of an understanding about how this happened. I think most doctors and researchers really want to help people but they've been looking in the wrong place for so long they're sort of lost.

Cathy....

I'll read the book.  I've only just started to really think about AP, like, yesterday.  I really appreciate you guys putting such effort into your answers.  I'm getting excited to learn more about it.  Thanks.

She thinks or does she know....I need much more proof then one doctor's word. Medical remission while on these meds seems much more likely scenario. 16 years is a long time to be in remission and I have to say that I would be more than willing to take that. Heck, I'd take 9 years.......As for the infection theory. I was very healthy before I got RA..rarely sick. RA started in my ankle and was originally diagnosed as chronic achilles tendonitis. I was a runner, ate healthy, exercised, only time I was ever in the hospital before RA was to give birth(no meds either, all natural)


Lynn

GoGo - you asked "Pip, are you saying that the new truth is mycoplasma's are really streppoccocal bacteria in a different part of their life cycle?"  (And I have no idea why the box didn't work when it's on another page). 

No, it's how all these different buggers work; it's why we have trouble killing them all off and most people have to be on antibiotics for life. 

Here's the link to the first page of the CPN people.  Read the "What makes Chlamydia Pneumoniae (Cpn) so troublesome?"  And if you search you can find the same 3 stage thing about all these beasties.

http://www.cpnhelp.org/

Linncn - I think the standard line is 'the body is very complex and works around the suppressants".  I just never bought that. 

Lynn -

I think the people you mention are luckier than most.  Maybe they have a slower moving infection.  Or their bodies are better at defending themselves.  Again, its people that are NOT the norm that should be studied.  Not the norm because they are the ones that hold the key to this.  I think the problem is searching for 'therapies' in that the more people that are covered by a drug make the drug more profitable for the Pharma co.  But if we really wanted to a) cure this or b) make a drug that worked longer for people, we need to find out what is special about the people that tolerate drugs longer.  Does that make sense?

Actually, this is something I wanted to ask about for a long time but was pretty much a wuss about it so never posted the question.  I don't want to be accused of dissing other people's drug choice when all I want is more info.  An example I can give is the post about the asymmetrical/symetrical nature of the onset of RA.  I suspected it was more people started out asymmetrical than not and guessed 50% from posts, and I was right.  Yet my rheumy sounded convinced I was 'unusual' because I was asymmetrical.  Since coming here I've figured out I'm not that 'unusual'. 

Well, I have a question about the biologics.  From posts, I'm guessing that the first usually works the longest and each progressive biologic works less time.  So, as a guess 3 years on the first, 1 1/2 on the second, a couple months on the 3rd.  (This is not to say I haven't seen posts where the 1st and 2nd didn't do anything but the 3rd is going strong.)  I'm just trying to see a pattern. 

And if I am right, then pushing the biologics to stop damage in the beginning (while possibly good intentioned but more likely a push to increase the coffers of the Pharma co.) may be the worst thing in the world for us.  I think I've only seen one post of somebody who has blown thru all the biologics and then went back to a DMARD like MTX or Plaq and had them work again.  What the heck are these people going to do then?  Get in a clinical trial?  Stem cell?  I worry that we're losing valuable time if we go this way.  Does that make sense?  What if AP fails (I don't think it will, but if...) and I have to get on the 'ladder' - I want as long as possible on each stage of drug so I can live my lifespan out.  I need to get 40+ years; get my point?

Again, what's the norm?  It's not like we'll ever get a study or info from a researcher.

Pip

Hey!

Lynn - you said symmetrical!  Go change your answer!  LOL

Pip, No need to change my answer...The first ortho said the reason my right ankle was hurting too was because I was babying my left ankle. He is no longer my ortho :) You want to know the real funny thing. My PT's suggested RA and they suggested I find another ortho. As for the biologics, for some they work very well. I think I could have possibly been one of those had I not developed an allergy to Humira. It worked well and fast. I've yet to have any other biologic work...will be trying Orencia. Careful now Pip, people will think that we can actually get along.


Lynn   Lynn4939379.7371180556

Sssssshhhhh!  I think we can!

I know they can work very well for people.  I'm just worried is all.  I'm only one person trying to make sense of all this 'science' so I can watch my grandchildren grow up!  And since my baby is 6 - I've got to last a while. 

I worry about us.  There's no place we can get 'true' info and we're a revenue stream. 

Pip

I think they told me today that if my anti-ccp was a 5 it would mean i was sick , mine was 100 they said that meant i was really sick. But i am so sick with infection i could not keep up. They may have been taking about c reactive protien and i miss understood. One of test was back and it was bad news. But if it helps them treat me it is just good news i already knew i was sick.Pip, how do you know you aren't getting "true" info?  maybe I'm wrong, but my impression is that you believe that big pharma won't tell the truth because they make alot of $$$.  As though it's a foregone conclusion that everything they say will be a lie.  This is a real question, not an attempt to be nasty.  I promise.

It's not just Pharma.  It's the whole system. 

The FDA get's 2/3's of its budget from Pharma fees.  Pull a promising drug and the fees to support the FDA are cut.

Pharma invests big money into a drug avenue (100's of millions) but are at loathe to drop the drug when problems arise because so much has been invested so far.

When drugs do have problems, a lot of the incriminating data is not given to the FDA by the Pharma co - because of how much money is on the line.

We read studies until our eyes roll in our heads - but very few of them list who paid for the study and how much the researcher has received from Pharma in grants etc. or what financial ties he has to the company.  Wasn't there just a post about how different Pharma and Non-Pharma paid study data was interpreted?

We don't go to Pharma websites to verify side-effect data because we don't trust Pharma - so we go to other sites for info - and the info is 'sponsored' by the Pharma company. 

It's a joke.  That's why I harp about patterns.  If Pharma/researchers hung out here they'd get a big surprise on what really is going on with us. 

1 out of every 6 Americans has an AI disease.  But because the medical establishment are 'splitters' (RA over here, Lupus over there) we are not treated as similar diseases.  If we were - we'd be the political block to beat all political blocks.

Oh, wait, we're too sick to organize.

Pip

oh.

That's how I am with pneumonia.  I get it and I usually need 3 Zith packs - except this last bout.  It only took one super dose of Levenox(spelling?).  Heck, that's how I am, period.  I was always getting sick with something or other.  That's why when people say they had a strong immune system, I'm like "???".  Linncn just said that she's not 'sickly'.  Karin wasn't either.  I don't get the connection.  It's probably why I don't buy the 'auto-immune' theory.  I know for me my immune system was 'wussy'.  :-)

Have you checked out www.roadback.org

Hugs,

Pip

Hey Pip!!!

My RD let me go back on the Mino and so far so good! It hasn't knocked down my pain and swelling yet, but I just went back up to 2 a day. I asked her about the probiotics and she said...there are no scientific studies that it helps, but take it if you want to. Good work GrammaKathy, but stay on that yogurt now! My GP asked if I was
getting yeast problems with AP, and I asked if she wanted to prescribe me
some Nystatin and she said "I would rather you just took some acidolphilus"
so there's one doc that believes in probiotics.

Like I've been saying lately, I'm trying to get more probiotics from foods. I'm
just eating through my very first batch of home made sauerkraut. It's a little
salty but mmmmm goood. Yes! I can eat it every day!

Gramma Kathy ~~ woo hoo !!!! 

Milly ~~ I am deeply impressed, you are getting this figured out about the infection connection.  I had chronic sinusitus forever, never could get rid of it.  Cipro gave me hallucinations :)  You might want to check out this anti-biotic protocol some of us (like Gramma Kathy just started), and see what happens.  I have had some RELIEF on them for almost three full months now, and I will settle for that - I like not feeling sick anymore. 

Getting back to anti-CCP, my next rheumy/blood test will be my deciding factor. 

Cathy

Grandma Kathy!

That's fantastic!  I was worried about you! 

I'm one of those people that can't get what I need from yogurt.  I need a ton more so I take 4 X the RDA on the bottle.  I'm adding in more natural stuff too.  They're not taking away my Mino!

Pip

I am officially starting a yogurt diet! LOL I do love it, and it fat free or 99% depending on which I buy, and it helps with my calcium! What more can ya ask for!  And somewhere in all this it was mentioned about pneumonia being a connection to RA, especially walking pneumonia.....I had a severe case of walking pneumonia about 6-7 years ago. My lungs were almost completely covered in white on the x-ray. Kathy, I like to use kefir.  It's in the groceries stores now, so you don't have to make special trips to the natural health food store.  I get about a cup of either yogurt and/or kefir in me every day, somehow, from smoothies to chugging it straight :)  I also take an oral pro-biotic capsule daily.well...i eat at least 2 yogurts a day usually anyways so i feel like i got a lukcy walk to first base on that one!  haha, fat free yogurt with live cultures bc i was trying to diet. 

back to the strep issue...the ironic thing was one of the first things they thought i had was rheumatic fever bc of all the strep i had that went untreated.  and i for the first time in my life had allergic reactions to penecilian & sulfa drugs.  i had taken amoxicilian 20 times throughout my life and it never affected me, then starting in january my whole body went haywire.  i was sick constantly with the 'strep' and had swollen glands the whole nine.  thus the start to how i ended up here...


about the anti-ccp...i had a positive of 127, and a rf of 43 then 47.  my dr explained it to me that the anti ccp test is the more specific test they now use for ra and it predicts ra by like 95% or something and a more aggressive and erosive form.  what else should i know about this test?
Yes Pip,  My immune system has always been wussy. My allergic system has always been out if control. I could make more snot than anyone. Trouble taking meds, inviormental, skin irratations ect. I wonder if that is why my RA is so out of control. Attacking the wrong thing is the one thing i have always been good at. I think i just need reprogramed.

Erica -

Are you sure it was an allergy?  What happened?

Also, if it was a tru allergy, there are ways of getting over those.  I keep starting the research but so far haven't finished.  I need to get rid of my sulfa allergy if I want to do one of the advanced AP protocols.

The CCP's higher number doesn't necessarily mean a more erosive form.  I know another person with a super high CCP and she's Palindromic RA - we don't necessarily get joint damage.  Only about 50% do.

Pip

Yes i am sure it was allergies. Little clues like not being able to breath or my skin pelling off rashes of course. My hayfever got so bad. As in it was spring threw fall. Used only be fall. I got the allergy shots. Was allergic to them. But i got enough in my system just to screw me up worse. My hayfever was better. But then i started all of these new drug allergies. I am even allergic to some allergy meds, gerd meds. I saw a show about a girl with myasthenia gravis. That desease you actually are allergic to some drugs because of the desease it self. Anyway i got pioson ivy shots when i was a kid. Always rubbing my eyes from the hayfever and would get pioson ivy in them. They don't make them anymore. Not allowed to give them anymore. Scary and i don't no why? Mine lasted 20 years and wore off. Anyone know why they quit making them, what did they do to people?

Milly - that sounds a bit like my sulfa allergy.  We're going to have to make you well!

Hugs,

Pip

my dr said it was al allergy pip if that really answers the question.  not life threatening reaction but he told me to never take them again in case.  i had hives and splotches and rash looking junk.  i think i read somewhere that RA can make you crop up new allergies suddenly.  have you heard that?  and after getting the RA under control the allergies go away?  idk, he also said my joint pain was an AI reaction to a sulfa drug, SOOOOO i'm not sure he was very reliable...i mean i am thinking how do you have severe joint pain and not think to test for something like RA etc I think you need to be very careful if you have allergies. I had anaphylactic reactions to both sulfa and penicillin.   Anaphylaxis is very serious and can result in death. I carry an epi pen with me....Any kind of allergic reaction should be checked out by a doctor. You can develop a sensitivity and anaphylaxis to a substance that you have been exposed to many times in the past without a reaction. That's what happened to me when I was using Humira.

Lynn






I have not croped a new allergy as of yet this flare. But that is interesting. I had some drug allergies as a child. But the list is rediculasly long at this point. At intake at a hospital and your sick that long list is just not fun. A real chore. But yes i wonder the RA connection so many people with lactose intolerence.


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