Maintaining IgM Antibodies for Years, Poor Prognosis in LD

[Spanky]

"duncan":

I think the reality is clinicians DO make judgements based in the CDC's two-tiered approach, which embrace high IgG values as a diagnostic tool.

Didn't say that they didn't.

I said that, so far as I know, they don't use them to determine whether infection is ongoing or not...which, if you look at your preceding comments, was what you were addressing.

But again, if I understand properly, if there is a longstanding infection, there should be a strong IgG response.

And there does NOT seem to be one in the case of Claudia's son.

And...IgM repsonses have questionable diagnostic value in late stage.

[Lorima]

Thanks, Claudia, for that very thoughtful and no doubt time-consuming round-up of information. Plenty of food for thought there, and I'll work on it. 

And Duncan, your perception that divergence from the guidelines is unusual accords with mine. I think it's because a doctor who believes and follows the guidelines, is safe from criticism from his colleagues and most of his patients. One who diverges is unsafe, so there are few who diverge. I congratulate those patients who happened to encounter such a doctor, but it's a rare and lucky event. (Or a rare, unlucky event, if one believes that the guidelines represent adequate science and medical policy.)

Best wishes to all, Lorima

[Spanky]

"Lorima": 

And Duncan, your perception that divergence from the guidelines is unusual accords with mine.

What?

I don't think that we are talking about 'divergence from the guidelines' here...but the complete lack of an IgG repsonse.

In other words, not talking about whether the patient met the CDC surveillance criteria...but a complete lack of IgG...that should be there if there were continuing infection.

Not a matter of the guidelines...but of biology.

And the question then highlights, I suppose, how confident one can be of a Lyme diagnosis in certain situations.

If you are willing to sidestep all the diagnostic criteria...and insist that it is Lyme...then what is the basis of that insistence?

[Claudia]

Lorima and duncan, see pages 118-119 in Cure Unknown:

Pamela Weintraub, in Cure Unknown wrote:

Even Andrew Levin, founder and president of Immunetics, the Cambridge, Massachusetts, company that manufactures the Western blots used by commercial labs, has his doubts. Suspecting the CDC pattern was overly ridged and prone to miss cases, he'd obtained samples of validated patient blood and had them analyzed by a computer program built with help from the scientists at the Massachusetts Institute of Technology. Using a small NIH grant to develop his system, Levin showed the presence of several antibody patterns, of which the CDC's was just one - and not the best one, at that. "If the two-tier criteria had been the best possible criteria," notes Levin, the computer program "would have taken us to it. But it did not. A number of other patterns emerged as the statistical front runners, instead." *

Surveying the limitations of the tests, Stony Brook scientists suggested the best way to diagnose Lyme disease might be to look not at a single test, but changes in sequential tests over time. They saw signs of positivity in rising antibody levels over subsequent ELISA's or the flowering of bands on Western blots conducted over months. But it was the rare pediatrician or family practitioner who understood these concepts and could follow suit. Instead, it was the CDC formula that stuck.

* In-person interview with Andrew Levin, Cambridge, MA, 2003

Here's a link to the grant for "Lyme Western Blot Interpretive Software" http://search.engrant.com/project/jIj6S ... e_software

If anybody has information on what these other Western blot banding patterns are, those "statistical front runners," I'd be very interested. Thank you.

[duncan]

I have several difficulties with current diagnostic guidelines for late stage Lyme (which I think we are talking about when we discuss positive findings over a sustained period, regardless of whether they are IgM or IgG's). Three rise to the top, but I've others:

1) I suspect most clinicians will not challenge what they believe the IDSA's guidelines intend or specify; accordingly, cases which fall outside the box may founder, e.g. Claudia's son. Even one such case is one too many; I think most will agree with that observation.

2) Current guidelines can be ambiguous, IMO. For instance, does someone's IgG positive readings suggest a history of Lyme, or point to the more serious and demanding diagnosis of late stage disseminated?

3)It seems to me that today's culture is such that when some clinicians are in doubt, too many may err on the side of high antibody activity being indicative of a PRIOR infection, and nothing really to worry about or act on, rather than assume it is late stage, and hence deserving of more aggressive treatment. Or maybe just a false positive. Part of that climate has, I believe, been conveyed to the general population through reports of over-diagnosing of Lyme, but there are other explanations.

These are just my impressions, but as a patient's impressions crafted through far too many interactions with doctors who either didn't get it, or got it wrong, they may resonate with others who have similar experiences.

[Spanky]

"duncan":

I suspect most clinicians will not challenge what they believe the IDSA's guidelines intend or specify; accordingly, cases which fall outside the box may founder, e.g. Claudia's son.

This may come as a shock to some...but I am fairly certain that not everyone has (or had) Lyme disease.

And granted, diagnosis is sometimes a difficult issue.

But if you cannot explain why there is NO IgG reponse AT ALL...not just once, but apparently across a number of tests...if you cannot explain that...

...then, personally, I wouldn't feel very comfortable with a diagnosis of Lyme disease, based on what I think that I have learned and personal experience.

I would be looking for other answers, as well. At least considering them. At some point, the Lyme diagnosis appears more likely than not.

With no IgG at all... and only late satge IgM...is anyone willing to admit that this may be a case where it is more unlikely than not? Sorry, but based on what is here...

At times, reading online accounts like this...it appears as though the poster is straining to find a way to rationalize or justify the diagnosis in the face of facts that seem contradictory...

...and reacts, sometimes, with anger and hostility to any suggestion that Lyme may not be the culprit. You would think that the important thing would be to get it right.

And yet, some seem to think that the appropriate thing to do is "support" this type of behavior. What kind of "support" is that, exactly?

As I have said, before...how one thinks about the issues may be more important to recovery in the long run than the contents of any abstract that someone has managed to find online.

And there are some 'interesting' psychologies on display at times...

[Claudia]

Adding this post by Dr. MacDonald from thread "NIH Videocast: Ticks - Lyme & Other Diseases" http://www.lymeneteurope.org/forum/view ... f=7&t=5237 because of its relevance to the discussion on IgM antibodies here.

Dr. Tom Schwan PHD of Rocky Mtn Lab, Hamilton , Montana
informs us that
For RELAPSING FEVER BORRELIA group, the infection in man
is FINALLY CLEARED from HUMAN BLOOD
BY
ANtibodies of Which CLASS???
[ Are you ready to receive DR. Tom Schwann's 27 years of expertise on RFB knowledge??}
did you guess that the CLEARING of RFB -[ Relapsing Fever Borrelia]Borrelia from Human blood is finally achieved by....
IgM class antibodies and IgM antibodies to RF Borrelia group are the Sole Antibody Class responsible for
clearing the human host from Relapsing FEVER Borrelia.
You are correct!!!
Now we return to the CDC guidelines for interpreting the significance of IgM CLASS antibodies in Lyme borreliosis

As dutifully recited by Dr. Adriana Marques, of the National Institution of Health:

In Lyme disease, IgM class antibodies are restricted to the diagnosis of Acute Lyme borreliosis.
In relapsing [Chronic} Lyme borreliosis, according to CDC Dogma..
IgM Class antibodies are Ignored, { not helpful in diagnosis, non-contributory}

Here we are re-acquainted with the difficulties of correctly interpreting medical [Biological} data:

Are we to deny : IgM antbodies in CHRONIC {relapsing forms of] Lyme borreliosis borrelioses
have absolutely NO IMPORTANCE .....
How do we reconcile the life saving benefits of IgM antiborrelia antibodies in Relapsing Fever Borreliosis?

Answer: Follow the Intelligence ..

Genovars of Borrelia in the Wild - great diversity
http://www.lymeneteurope.org/forum/view ... f=5&t=5238

.. Follow the IgM Antibodies in RFB diseases to a clinical cure,,, and follow the
IgM antibodies in burgdorferi borreliosis group chronic borreliosis too .. to find the realities of chronic {relapsing} burgdorferi borreliosis to reach diagnostic truths and to discover biological truths.

My Conclusion: IgM antibodies are extremely RELEVANT IN CHRONIC BORRELIOSIS ILLNESSES ( RFB and LB types )

_______________________________
Respectfully,
Alan B. MacDonald MD, FCAP, FASCP
February 16, 2014

[Claudia]

Bumping old topic, looking for new information.

[velvetmagnetta]

Hi Claudia -

I was reading over this topic (I haven't read it all yet) and I am just so sorry you are still having to deal with this issue after 3 or 4 years now!?!

Have your son's symptoms gotten any worse or have they stayed the same? (I have to say here that I, personally, do not believe (or at least hope not with all my heart) that Lyme disease is chronic after long-term antibiotic treatment.)

There is some new information about IgM antibodies in late-stage Lyme disease. I cannot, right now, find the actual posts or texts, but I believe it has something to do with the spirochete's changing outer-surface proteins and/or antigens. Since the spirochete can change its coating, the body is constantly responding with new IgM class antibodies and doesn't get the chance to make the longer lasting and more specific IgG antibodies.

Someone will have to correct me on here, but it is something like this, and I just wanted to get that out there. This incredibly advanced and interesting bacterial behavior may explain why late-stagers never show many (if any) igG's, but consistently test positive for several IgM's.

There is a discussion about this topic going on right now in the new thread that dif started here:

IGeneX changes interpretation criteria for positive serology
http://www.lymeneteurope.org/forum/view ... f=5&t=5684

Maybe you can find some current, relevant information there?

[velvetmagnetta]

Oops...I'm a little behind the curve - I just saw your (Claudia's) post in the thread I just posted!