Is band # 41 more important than I thought?

[cave76]

I've always sort of 'tossed' band 41 away as being due to cross-reactivity to other problems: gingivitis being just one of them.

Now I'm re-thinking it. But it IS just a theory still.

There's one well known doctor/researcher who has postulated that B. miyomatoi might be one of the reasons for band # 41 showing up on almost all our Western Blots.

His theory: there is cross reactivity not only between the Treponema flagellins (the 'tail') but  cross-reactivity with B. miyamotoi. So---- before the statistics were in for B. miyamotoi ("what isn't looked for isn't found") perhaps a whole bunch of us had been infected by that species. As I said----- it's just a theory.

" In both technical and nontechnical contexts, theory  can also be synonymous with hypothesis,  a conjecture put forth as a possible explanation of phenomena or relations, serving as a basis for thoughtful discussion and subsequent collection of data or engagement in scientific experimentation in order to rule out alternative explanations and reach the truth.

In these contexts of early speculation, the words theory  and hypothesis  are often substitutable for one another: Remember, this idea is only a theory/hypothesis; Pasteur's experiments helped prove the theory/hypothesis that germs cause disease.  

Obviously, certain theories that start out as hypothetical eventually receive enough supportive data and scientific findings to become established, verified explanations. Although they retain the term theory  in their names, they have evolved from mere conjecture to scientifically accepted fact."

http://dictionary.reference.com/browse/theory

[cave76]

Sorry if I wasn't clear---- I wondered if you had read that (caps for emphasis only) B. MIYAMOTOI was posited to be at least partly responsible for band #41.

It would interesting to read other articles supporting that.

[wonko]

"The only thing for sure is that no two docs have the same approach, and no two patients have the same issues!"

Yup, that concise summary rings true with me!

[wonko]

I'm not sure what you are getting at or if you misunderstood what I intended, so to reiterate...I was expressing agreement with you/the topic OP by stating that I have "also" read that about band 41.

[cave76]

"I've also read that band 41 is not specific to Lyme."
So  have I, hence my OP here.

[JackieCalifornia]

Hmm, interesting question about when the PCR testing took root.  I first had the test (through IGeneX) in 2007.  The only thing for sure is that no two docs have the same approach, and no two patients have the same issues!

[mojogal]

I still feel Bart's is my biggest problem since I have lesions on my brain and many Neuro problems as well as lesions on my chest and stomach.

Thank goodness our Dr's treat us based on symptoms, which were very obvious

[wonko]

JC-Not sure on the PCR.  I'm referring to "old news," testing done back in 2008.  Not sure how widespread PCR testing was at that point?

Mojo-I had negative blood tests for Bart through Igenex.  A smear through a place called Fry Labs showed something in my blood, but I don't think that was a widely recognized/approved test.  Symptom-wise I strongly fit Bart, and my LLMD always told me that Bart was my biggest problem.

[mojogal]

I agree with you. Many LLMD treat based on symptoms. Before my IgeneX tests came back I started on Doxy, thank goodness I got ahead start on the whole thing.

Same for my Babs. I clearly had it, all the symptoms but my co- infection test only came positive for Bart's the first time.

[JackieCalifornia]

Was there a reason your doc didn't order a PCR test?

[wonko]

I've also read that band 41 is not specific to Lyme.

The way I look at it is this:  If a person is very sick with symptoms that fall under Lyme, but all other testing in a differential diagnosis have come back negative, then even weak or no positive serology for Lyme is still good reason to get evaluated by an LLMD.

For me, it all came down to a risk versus benefit analysis.  The risk of treating Lyme with oral antibiotics was low.  The benefit of possibly treating my condition was high.  The risk of staying in "limbo," with no concrete diagnosis, poor symptom control, and worsening symptoms, was high.  

So, despite very little in terms of positive test results for Lyme (2 negative Elisa's, only 2 bands on Igenex western bolot [one of which was 41], spinal fluid negative for Lyme), and despite my having no memory of a tick bick, no bull's eye rash, no "classic" Lyme onset symptoms (flu-like condition or swollen knees), I went forward with antibiotic treatment from an ILADS member LLMD.  And it worked!  Though not 100% cured, I am much, much better, with many nasty neurological symptoms resolved.

Your mileage may vary, but for me I didn't get too hung up on the details of my tests, and instead based my pursuit of Lyme treatment on the fact that so many other diseases had been ruled out and on the fact that oral antibiotics are low-risk for most patients.