More questions on Lyme and RA

[Karel]

Dear forum,

I have some thoughts, which you may be able to help me with.

Both Igenex (on their webside) and Labcorps (on the testresults) state that the Lyme WB bands might be affected by Rheumatoid (factor), but they are not specific for which bands that would be. I found this article http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2168181 , which links Lyme and Rheumatoid, as far as I could understand, only via the 31kDA band. Can I conclude from this that band 31 is the only one which could show up as a consequence of Rheumatoid or are other bands also cross reactive?

Since Lyme is known to be immunosupressive, could it be that Rheumatoid Factor could be negative if you have both Lyme and Rheumatoid? If I say Rheumatoid I mean Rheumatoid Arthritus, which is different from the typical Lyme Arthritus (big joints, moving).

Still trying to find out if I have Lyme on top of the Rheumatoid. Thanks for your input!

Karel

[Maz]

@Karel wrote:

Can I conclude from this that band 31 is the only one which could show up as a consequence of Rheumatoid or are other bands also cross reactive?

Hi Karel,

Band 31 – or OSP A (outer surface protein A) and Band 34 – OSP B – are the antibody bands that have been associated with chronic Lyme arthritis in folks with the human leukocyte associated antigen (HLA) type DR4+ genotype (HLA-DRB1*0401):

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC280920/

Worth noting that one lab test is just a moment in time and that due to the waxing/waning and immunosuppressive nature of Lyme disease, a person may test positive one day and negative the following month and vice-versa. Experienced LLMDs only use labs as one part of a complete work-up and it’s great if they are fully positive and are a nice confirmation of infection (as yours are), but these docs also recognize that the patient’s symptoms, other supporting labs, history, living/visiting Lyme endemic regions, etc., are just as important, if not more so, when the tests are negative. In other words, the full clinical picture is taken into account and not just one lab that is but a moment in time.

To give you an example, I had two clearly visible bulls-eye rashes, but kept testing negative on standard tests. When I got the IGeneX labs run, I only tested positive on one antibody band on IgM (Band 23-25) and two on IgG (Bands 39 and 41) with an IND (indeterminate on Band 31). I was just “lucky” to have two hits on ** antibody bands on IgG, resulting a positive result. These were not strong positives, either – just one + on each. However, as my early symptoms were classic (stiff neck, light sensitivity, headache, malaise, fatigue, migrating arthralgias, myalgias) and I was fortunate to have someone see my rashes on my mid-section (I didn’t notice them until they were pointed out), I knew it had to be Lyme, even when it evolved into fully-fledged swift onset, severe RA within 2 months of my rashes. My PCP at the time had no clue, though he saw the EM rashes and took note of all my symptoms – crazy – I live in CT, and he refused to treat me without a positive ELISA and western blot. If I had received treatment early, it’s very possible it would not have evolved into a chronic, debilitating autoimmune disease.

Lyme can present as both seronegative and seropositive RA, as well as with zero inflammation or extremely high levels of inflammation. It’s the “second great imitator” (the first being syphilis), as it can mimic and trigger all kinds of diseases, including what appears to be autoimmune (self-attack) reactions. There are a number of articles outlining how autoantibodies (RF and anti-CCP) can be positive in Lyme disease – here are a few:

http://www.ncbi.nlm.nih.gov/pubmed/15881948
http://www.ncbi.nlm.nih.gov/pubmed/10577962
http://www.ncbi.nlm.nih.gov/pubmed/2009675
http://www.ncbi.nlm.nih.gov/pubmed/22320032
http://www.indianjmedsci.org/article.asp?issn=0019-5359;year=2009;volume=63;issue=3;spage=89;epage=91;aulast=goeb

It’s not really clear why some people are seropositive or seronegative with Lyme/RA, though it may have to do with genetics and/or Lyme strain variation or possibly even latent, reactivated coinfections (p. gingivalis, for example, has been tied to anti-CCP and m. pneumoniae to RF). Lyme dulls immune response, so it can also cause other infections to proliferate that would otherwise have been kept in check by a healthy immune system.

For further reading, it is worth looking at the LymeRix fiasco. This was the Lyme vaccine that actually used OSPA in its formulation and was removed from the market as those with HLA DR4 haplotypes were coming down with RA and other autoimmune problems.

http://www.lymediseaseassociation.org/index.php/about-lyme/controversy/vaccine/261-lymerix-meeting

What is so striking about the whole LymeRix issue was that the OSPA antigen was considered so specific for Lyme disease that they created a vaccine using this protein!!! They also removed Bands 31 and 34 from the standard western blot because they didn’t want cross-reactivity with those getting the vaccine and being tested later. In spite of these antibodies being so specific for Lyme, they never replaced these antibody bands back into the test when the vaccine was removed from the market (citing that these antibodies only showed up in late stage infection by which time a patient would have been diagnosed or have no symptoms). This has meant that those folks who often are the sickest, with late stage chronic Lyme and autoimmune manifestations, may never test positive on standard tests for it (which is why IGeneX has included these antibody bands in their test)! Instead, patients are just told they have an autoimmune disease and couldn’t possibly have Lyme, because they tested negative on standard tests. Have even had folks writing to RBF saying they tested CDC positive on standard tests but were told it was a false positive! Ummm…why bother testing anyone, if (a) it’s so hard to get a positive due to lack of sensitivity and specificity of the standard tests and (b) when a person does test positive they are told it can’t be positive? It’s all a big problem for anyone trying to understand all this, especially anyone new to this mess and dealing with a serious illness.

Since Lyme is known to be immunosupressive, could it be that Rheumatoid Factor could be negative if you have both Lyme and Rheumatoid? If I say Rheumatoid I mean Rheumatoid Arthritus, which is different from the typical Lyme Arthritus (big joints, moving).

Yup.

Still trying to find out if I have Lyme on top of the Rheumatoid. Thanks for your input!

I guess it depends on what you need for evidence, but you could be waiting a long time because every lab will vary in specificity and sensitivity of testing methods and as Lyme waxes/wanes it could be pretty hit or miss what shows up on any given day. Just checked out your IGeneX WB results in a previous post and it’s pretty evident you had some very positive (+,++ and +++) hits on some highly specific antibody bands and tested strongly positive on both IgM and IgG by that lab’s standards. Some LLMDs are of the opinion that just one ** antibody band is significant. Not only this, there is now known to be a strain of borrelia in the US (B. miyamotoi) that doesn’t even show up on any indirect test. Some folks are getting lucky with PCR testing for that one, but just depends if it’s found in that one small blood specimen as these pesky spirochetes have a tendency to drill out of the blood stream and into the tissues pretty quickly.

viewtopic.php?f=1&t=10664&p=74867#p74867

Of course, we’re just patients here, Karel, and no one can tell you that you have Lyme or not, but your IGeneX labs are saying you are positive for both past/present infection. Is it accuracy you’re questioning?

Have you seen this video, explaining how Lyme can present as autoimmunity?

http://www.envita.com/conditions-we-treat/lymedisease

Hope something above might help…sorry, I rattled on a bit, but I don’t think I’m really clear what you’re questioning in light of your positive test. ❓

[Karel]

Maz, thanks for your very informative reply. This will take me a bit to digest, but just want to let you know I very much appreciate you jumping in. I guess my search for more confirmation on the Igenex results has multiple sides. First, as anybody would probably do for which the clinical picture is not typical, rule out false positives caused by cross reactivity (rheumatoid in my case and/or other infections?). Second, the PCR and Antigen test, although low in sensitivity may take away my last bit of doubt forever, and the time for that would be now. Third, I guess but no sure, my insurance would be easier on me if I have more proof. Lastly, if AP is not helping my RA and Lyme treatment is not helping the assumed lyme and with the RA then I will go probably on biologicals (if further diet/supplemental changes havent worked either) and the more proof that I DONT have lyme for starting biologicals the better. Yes, Yes, I agree with you I may never find out, but at this point, with exception of the RA, some tiredness and a sporadic headache, my symptoms do allow some more experimenting and doubting. I am three weeks away from doing more labwork with Igenex, so I am not going to sit on this forever and my LLMD is ready to start. Thank you very much! Karel

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