My "second opinion" visit

[Nickie_M]

A week ago, I visited with my new Rheumy.  After a 45 min session of examination and questions, she looked at me and said..”I feel quite certain that you do NOT have inflammatory rheumatoid arthritis.”   This announcement was delivered despite my presentation of the documents that showed that on June 11/08, my RF was 640.  On May 4/09, my RF had fallen to less than 20.  This is after being on and off mino for a little over 3 months.  Her main focus was that because I didn't “present” with RA, it must be an infectious disease.  She mentioned Hepatitis B and C as well as autoimmune Hepatitis.  Her logic was that it's impossible to have an RF at 640 without SOMETHING going on. (of course cancer is always lurking too)  My blood work, (which I haven't heard about yet), included the following tests:  C3, C4, CRP, RF, CRYO, ANA, DNA, APHL, AMA, SMA, ENA, SM, RNP, SSB, SSA, SCL, JOL, ESR, PT, APTT, LUPS, PTH, B12, D25, CCP.  She told me that if nothing irregular shows up in these results, I should be seeking an infectious disease specialist. I am off the mino for the last week to see if the RF jumps back up as it did last time. (went from 21.5 to 289 after being off 4 wks in Feb/Mar)  I really am confused and frustrated and I wonder if anybody out there has been through anything similar.  My personal belief is that RA is just around the corner for me.  Am I being too pessimistic? 

[Tiff]

I hope you are being too pesimistic.  Your labs are certainly atypical with such huge swings in RF.  But ABX definitely influence that number, there is no question.

My own experience was different, but similar in that I too thought I had RA.  I was told by several doctors – quite firmly – that I did not have RA because I did not present clinically and my labs were inconsistent.  I was on ABX at the time for skin issues which I now thing were the reason it did not show up clearly.  I am now quite distinctly RA, whatever that means as it really doesn't diagnose anything, does it?

Take heart though, you very well may have some form of reactive arthritis that will clear up on its own or with minor intervention, and the fact that you are responding so robustly to the ABX is a good indication that you will do well with AP even if it is technically RA.

My question is, why doctors seem to have such a hard time diagnosing RA in the first place?  It appears to me that they can only recognize it when it is very obvious.  My first rheumy had been practicing for 20 years.  Why would he have been so clueless and given me false hope? :X

[Nickie_M]

**Take heart though, you very well may have some form of reactive arthritis that will clear up on its own or with minor intervention, and the fact that you are responding so robustly to the ABX is a good indication that you will do well with AP even if it is technically RA.** 

THANK-YOU Tiff!! for your quick reply and a new perspective.  Your experience and insight has given me SUCH hope.  I've periodically wondered if my eradication therapy (as per Barry Marshall's antibiotic protocol) 14 years ago, (when I had only a 'slightly' elevated RF and was summarily dismissed as a false positive), for the helicobacter bacteria the docs found in my stomach lining could have affected the course and intensity of my RA.  I just keep thinking that if I HAVE an alternate infectious disease, I would a) be a lot sicker, b) show signs of progression over 14 years.  Interesting footnote:  My New Rheumy said it couldn't possibly be mycoplasma because they don't live that long.  Nonsense.  I think I'll go back to my original Rheumy.:blush:

[Maz]

[user=1317]Nickie_M[/user] wrote:

I've periodically wondered if my eradication therapy (as per Barry Marshall's antibiotic protocol) 14 years ago, (when I had only a 'slightly' elevated RF and was summarily dismissed as a false positive), for the helicobacter bacteria the docs found in my stomach lining could have affected the course and intensity of my RA. 

 I just keep thinking that if I HAVE an alternate infectious disease, I would a) be a lot sicker, b) show signs of progression over 14 years.  Interesting footnote:  My New Rheumy said it couldn't possibly be mycoplasma because they don't live that long.  Nonsense? :blush:

Hiya Nickie,

I second Tiff's comments above. I'm also interested to hear about your HP infection, because there have been studies on HP, RA and longterm treatment with Biaxin (aka clarithromycin). In patients with RA who had concommitant HP infection, treatment with biaxin proved very efficacious! If I can find the study again, I'll pass it on to you, though I think it's already logged in the main site somewhere, but will have to dig it out. Very definitely, though, many forms of arthritis have been linked to infections:

http://www.drmirkin.com/joints/J106.htm

RF can be elevated in any number of conditions, not just RA. I think the difficulty is that rheumies do go by clinical presentation in combination with bloodwork. If someone is a-typical in presentation (as pr ACR guidlines) and the bloodwork isn't consistent with a rheumatic disease, it can be challenging to offer a definitive diagnosis. Strangely, however, even if someone is completely seronegative for RA, they can still get a diagnosis for RA if their clinical presentation matches the RA picture! Thing is, if one believes in infectious causes, it really doesn't matter, as per Brown's “lumper” theory.

Mycoplasma are everywhere and we're swimming in a soup of them every day making us constantly exposed. So, even if treated for an acute infection, they'd still be around….kinda like if one gets chicken pox. The virus remains in the body and may manifest as shingles later. Or, strep, another example, may manifest as rheumatic fever. Brown found that mycoplasma hung out in the body in L-forms that looked a bit like fried eggs under high magnification (and looked surprisingly like bio-films). What they're learning now is that bio-films are probably what cause persistence in chronic diseases. These are communities of pleomorphic (shape-shifting) organisms that work synergistically together and communicate via chemicals they emit. There is going to be some interesting research shared in the upcoming Spring eBulletin about this, so you might find this interesting, if you are signed up to receive the eBulletin.

Another interesting tidbit is that RA in particular seems to follow a waxing and waning pattern. Infections, such as chronic Lyme disease, are documented as waxing and waning. Why? Researchers think it's due to the pleomorphic nature of these organisms. The cystic form (just one of the many known forms) of Lyme is the dormant form…it's still there, but not presenting outwardly as physical symptoms. When conditions are right, however, it rebirths into spirochetal (spiral-shaped) form and plays havoc again, hence the relapsing/remitting nature of Lyme. H Pylori is a similar type of spirochetal organism! Another example is syphilis, which is also spirochetal and in its chronic form requires open-ended antibiotics.

So, is the persistence of mycoplasma or other bacterial forms nonsense? I think your doc might find a few researchers who disagree with him. 😉

Peace, Maz 

 

 

 

[Maz]

PS Nickie, here are a couple studies re: H Pylori, RA and clarithromycin.

http://www.druglib.com/abstract/og/ogrendik-m_curr-med-res-opin_20070300.html

http://www.ncbi.nlm.nih.gov/pubmed/12144579

Peace, Maz

[Nickie_M]

Hi Maz,

Once again I am amazed and impressed at the research articles at your fingertips.  You really do have a tremendous understanding of “The New Arthritis Breakthrough” and faaaar beyond. 😉  I'm really tight for time this evening.  But…. a) terrific comments on mycoplasma, b) your examination of the pairing of clinical presentation and bloodwork numbers is so reasonable and clear,  and c) although your first link re: H Pylori and antibiotic therapy linked to RA I had NOT seen, I was aware of the second study.  I plan to take BOTH references to my old Rheumy on Thursday.

I'll tell you a little more about my history with H Pylori as soon as I find a block of time.

I will also be VERY  interested in your comments after I report of the success, (or failure), of this Thursday's appointment on the forum.

Your input is greatly appreciated.

Nickie
 

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