Lyme Disease: Evidence-based Approach & Great Controversy

General or non-medical topics with information and discussion related to Lyme disease and other tick-borne diseases.
tosho
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Re: Lyme Disease: Evidence-based Approach & Great Controver

Post by tosho » Fri 11 Nov 2011 23:21

tickborne diseases 1 : 0 today's medicine


The good news is that The Game goes on. :)

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Spanky
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Re: Lyme Disease: Evidence-based Approach & Great Controver

Post by Spanky » Fri 11 Nov 2011 23:39

"Martian":
I would say that potential benefits of longer treatments actually haven't been that often decently studied.

Also, one can't simply generalise the outcome of the studies, since the studies only show the outcome of treatment X for Y time. It's quite well possible that treatment XX for YY time gives another outcome
Well, I suppose...you could keep going back to the well...over and over again...but at some point, the laws of mathematical probabilty have to come into play, or should. It's kind of a 'woulda, coulda, CALDA' argument. But if you asked me to fund that...no way.

As I suggested before, are we shopping for a result that we would rather have?

And if so...why? Sure doesn't do the patient any good to be treated with antibiotics if the real problem isn't responsive to antibiotics...but what about some doctors? Hmmm?

I would think that the same reasons that the plug was pulled on the Klempner trial would make repeating this kind of thing unlikely to produce a different result...and I think( might well be wrong about this)...I think that you have to assume the odds of getting a different result are diminished by each succeeding similar result. You probably aren't talking about a 50/50 pre-trial probabiltity, unless I am badly mistaken, thinking about this wrong.

And if there is no substantial improvement being seen short-term...why would anyone expect to see it long-term?

I guess that, looking back at my own experience, I distinctly remember a point where one of the docs wanted me to keep taking antibiotics...and I told him, "no"...because they weren't doing any good. I couldn't feel or see any improvement. And that may have been when I started down the road to recovery, actually.

What then happened was that I asked to be tested for an autoimmune thyroiditis (because of the symptoms I was experiencing)...and it was positve for thyroid antibodies. (Triggered by the initial Lyme infection? Who will ever know)?

The point is: wouldn't do me a damn bit of good to keep insisting on taking antibiotics, if the problem was my thyroid, would it?

And the point made by Henry...is well-taken, I think...patients should think about the consequences of maybe missing the real underlying problem.

If I had focused on the thyroid earlier...maybe it would not have taken me so long to recover? Again, we'll never know...but I am convinced that antibiotics were not helping...and would not have if I had continued them.

tosho
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Re: Lyme Disease: Evidence-based Approach & Great Controver

Post by tosho » Fri 11 Nov 2011 23:58

Thyroid problems are another interesting field of medicine.
Guess what (Spanky probably knows it)... there are also controversies about how to best diagnose and treat thyroid disorders.
Here is an example of patients' advocacy:
http://www.stopthethyroidmadness.com/

On a side note. I recommend that everyone who suffers with chronic disease should make tests in order to check thyroid:
- TSH
- free T3 (note the word 'free')
- free T4
- reverse T3
- anti TPO
- anti TG
- USG of your thyroid

Interpretation of these tests is tricky. But it's a bit too long to write it here.

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Spanky
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Re: Lyme Disease: Evidence-based Approach & Great Controver

Post by Spanky » Sat 12 Nov 2011 0:15

"tosho":
Guess what (Spanky probably knows it)... there are also controversies about how to best diagnose and treat thyroid disorders.
Good guess. Yes, Spanky can name that tune...in one note. Getting the problem diagnosed was only half the fun. Getting the replacement dosage properly adjusted...that took a long time. But I did notice an almost immediate improvement...with the first dose.

Not only that...reading, after awhile, you pick-up a noticeable cross-over in the symptoms between "chronic Lyme" symptoms and those of thyroid disorders.

I am certainly not suggesting that my experience is somehow representative, or to be taken for anything except how I look at things...I am merely trying to explain how I see things as a result of my experiences.

Could I have had an undetected thyroid disorder and not Lyme? My doctors still think it was Lyme. We discussed it recently. They still hold to that diagnosis. I did not diagnose myself as having Lyme. I did not have the symptoms that I now associate with the thyroid problem before having been diagnosed with Lyme. That's all I can safely say.

But again...I am saying that it might be smart to consider other possibilities other than continuing infection...

But...could Lyme "trigger" such a disorder? I have posted this, here, several times, now:

===========================================================================================
http://www.ncbi.nlm.nih.gov/pubmed/1567 ... t=Abstract

2004 Nov;14(11):964-6.

Homologies between proteins of Borrelia burgdorferi and thyroid autoantigens.

Benvenga S, Guarneri F, Vaccaro M, Santarpia L, Trimarchi F.


Source

Sezione di Endocrinologia del Dipartimento Clinico Sperimentale di Medicina e Farmacologia, Università di Messina, Messina, Italy. s.benvenga@me.nettuno.it


Abstract
Subclinical exposure to microbic antigens that share amino acid sequence homology with self antigens might trigger autoimmune diseases in genetically predisposed individuals via molecular mimicry. Genetic predisposition to Graves' disease (GD) or Hashimoto's thyroiditis (HT) is conferred by HLA loci DR3 or DR5, respectively. Yersinia enterocolitica (YE) outer proteins (YOPs) are candidate triggers based on the high prevalence of serum antibodies (Ab) against YOPs in autoimmune thyroid diseases (AITD) and reactivity of these Ab with hTSH-R, suggesting homology between YOPs and hTSH-R. We have reported previously that the spirochete Borrelia burgdorferi (Bb) could be another trigger. We have explored further the homology of hTSH-R with YE and Bb. Using the Basic Local Alignment Search Tool (BLAST), we found four matches with YE and five matches with Bb . Residues 22-272, 186-330, 319-363 and 684-749 of hTSH-R matched YopM, Ysp, exopolygalacturonase and SpyA of YE (identity 23-31%, similarity 40-48%). Residues 112-205, 127-150, 141-260, 299-383 and 620-697 of hTSH-R matched outer surface protein A, flagellar motor rotation protein A, two hypothetical proteins (BBG02 and BBJ08) and DNA recombinase/ATP dependent helicase of Borrelia (identity 27-50%, similarity 40-75%). Interestingly, the above hTSH-R regions coincide with (or include) known human T-cell epitopes: aa 52-71, 140-176, 240-270, 340-380 and 441-661. Our data strengthen the hypothesis of Bb and YE as environmental triggers of AITD in genetically predisposed persons through molecular mimicry mechanisms.


PMID: 15671776 [PubMed - indexed for MEDLINE]

Henry
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Re: Lyme Disease: Evidence-based Approach & Great Controver

Post by Henry » Sat 12 Nov 2011 0:45

Spanky: I am quite certain every thing that I said about the Klempner study and the interim analysis is correct. At one time, the protocols for both studies (the seropositive and seronegative) were posted on the NIAID Lyme disease website and ytou would be able to see all of that yourself. However, that is no longer the case. I assume the NIH removes such information shortly after a study has been completed.

Tosho: IgM Western blots are reliable only during the first 30 days after infection. After then, there is a high percentage of false positive (weak cross-reacting antibodies vs pentavalent IgM) and only IgG Western blots should be used. I believe you said the IgM assays were positive, but the IgG assays were negative. That makes sense. If someone believes that they have chronic Lyme disease, I assume that the infection will have been present for a long period of time, in which case the IgG assays would be positive by the CDC criteria -- if they are really infected.

tosho
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Re: Lyme Disease: Evidence-based Approach & Great Controver

Post by tosho » Sat 12 Nov 2011 1:19

Henry wrote:
Tosho: IgM Western blots are reliable only during the first 30 days after infection. After then, there is a high percentage of false positive (weak cross-reacting antibodies vs pentavalent IgM) and only IgG Western blots should be used. I believe you said the IgM assays were positive, but the IgG assays were negative. That makes sense. If someone believes that they have chronic Lyme disease, I assume that the infection will have been present for a long period of time, in which case the IgG assays would be positive by the CDC criteria -- if they are really infected.
Henry:
First of all I was infected in Poland and I live here, so me and my doctors don't care too much about CDC criteria :) (let's forget about my Bb Western-Blot Igenex test for a while. For me the more valuable is Western Blot that I did here in Poland).
Secondly, I, as a patient, listen to my doctors who say that all current tests for Bb are unreliable. That means you can have late Lyme disease and negative IgG Western Blot.
Thirdly, I had also three ELISA tests at qualified laboratories with results as follow:
1. IgM - and IgG -
2. IgM +/- and IgG -
3. IgM - and IgG +

All these tests were done after standard course of 2-4 weeks of antibiotics for Lyme.

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Spanky
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Re: Lyme Disease: Evidence-based Approach & Great Controver

Post by Spanky » Sat 12 Nov 2011 2:06

"Henry":
Spanky: I am quite certain every thing that I said about the Klempner study and the interim analysis is correct.
Okay?

But not sure why you are addressing this to me? I don't think I suggested otherwise...

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Spanky
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Re: Lyme Disease: Evidence-based Approach & Great Controver

Post by Spanky » Sat 12 Nov 2011 2:31

"tosho":
"First of all I was infected in Poland and I live here, so me and my doctors don't care too much about CDC criteria ..."
But, if you don't mind my saying so, you do seem to care a great deal about the IDSA.

The 'A' stands for...you know...

Can you explain that to me? Not meaning to be confrontational here...just trying to understand.

I do sense that the IDSA's opinions seem to have considerable impact in Europe...and some of the posters here and other places don't seem to appreciate that too much...

...but they are not forcing Polish doctors to agree with them, are they?

I mean, isn't it ultimately the decision of your doctors whether they agree or disagree...exactly as you just indicated in regard to the CDC?

LymeH
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Re: Lyme Disease: Evidence-based Approach & Great Controver

Post by LymeH » Sat 12 Nov 2011 3:01

Henry wrote:Tosho: IgM Western blots are reliable only during the first 30 days after infection. After then, there is a high percentage of false positive (weak cross-reacting antibodies vs pentavalent IgM) and only IgG Western blots should be used. I believe you said the IgM assays were positive, but the IgG assays were negative. That makes sense. If someone believes that they have chronic Lyme disease, I assume that the infection will have been present for a long period of time, in which case the IgG assays would be positive by the CDC criteria -- if they are really infected.
Henry, as I understand it, the LLMD opinion, right or wrong (most likely wrong), is that there are undetectable cysts of Bb that do not show up on any tests. These cysts burst and essentially reinfect the patient, causing the IGM to once again become positive even though the original infection was acquired long ago. The IGG turns negative despite long-term infection because the (1) tests are inadequate or incorrect, and (2) the bacteria are stealth and hide, undetectable by any means. Can't win, or lose, depending on your perspective.

And, welcome to the forum!
.

tosho
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Re: Lyme Disease: Evidence-based Approach & Great Controver

Post by tosho » Sat 12 Nov 2011 11:57

Spanky wrote:"tosho":
"First of all I was infected in Poland and I live here, so me and my doctors don't care too much about CDC criteria ..."
But, if you don't mind my saying so, you do seem to care a great deal about the IDSA.

The 'A' stands for...you know...

Can you explain that to me? Not meaning to be confrontational here...just trying to understand.

I do sense that the IDSA's opinions seem to have considerable impact in Europe...and some of the posters here and other places don't seem to appreciate that too much...

...but they are not forcing Polish doctors to agree with them, are they?

I mean, isn't it ultimately the decision of your doctors whether they agree or disagree...exactly as you just indicated in regard to the CDC?
In Poland there is a group called Polish Society of Epidemiology and Infectious Diseases. They created a document called:

Flisiak R, Pancewicz S; Polish Society of Epidemiology and Infectious Diseases. Diagnostics and treatment of Lyme borreliosis. Recommendations of Polish Society of Epidemiology and Infectious Diseases. Przegl Epidemiol. 2008;62(1):193-9.

http://www.ncbi.nlm.nih.gov/pubmed/18536243

This document is strictly based on IDSA guidelines.
Bad thing: this document is officially accepted in medicine in Poland and there is almost never a single word about controversies or about people who disagree with it.
Good thing: this document is not a guidelines but recommendations (note the word recommendations in the title). That means physicians have a free choice of what to do.

People are angry that Polish Society of Epidemiology and Infectious Diseases instead of creating their own recommendations made a piece-of-cake copy work of IDSA guidelines.

With each passing year the awareness of controversies raises in society and medical community. As the times goes on there are more and more doctors who treat this illness as a chronic.

Official statistics say ca. 10 000 new cases of Lyme borreliosis each year in Poland.

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