A Modest Proposal

General or non-medical topics with information and discussion related to Lyme disease and other tick-borne diseases.
Henry
Posts: 1108
Joined: Thu 10 Nov 2011 18:49

A Modest Proposal

Post by Henry » Mon 21 Dec 2015 18:04

Although Lyme disease has historically been defined as a bacterial infection caused by the spirochete, Borrelia burgdorferi, some, notably Dr. Richard Horowitz, a founding member of ILADS who claims to have treated more than 12,000 patients with Lyme disease, have re-defined this disease, giving it a new name. He calls it Lyme-MSIDS or Lyme multiple systemic infectious diseases syndrome. Dr. Horowitz has even developed a novel tool for determining the probability of having this new disease (http://www.tiredoflyme.com/horowitz-lym ... naire.html ). He claims to have conducted extensive research on Lyme disease and babesiosis; however, a PubMed search reveals no scientific publications by him on either of these diseases. So much for peer-reviewed evidence to support his claims.

Those who frequently visit this website are well aware of the intense distrust of some with respect to currently used and approved methods for the diagnosis (2T testing) and treatment (IDSA guidelines) of historically defined Lyme disease; although they have received much scrutiny, they are universally accepted by national and international experts on Lyme disease. By contrast, patients have been diagnosed by LLMDs as having Lyme disease, who are seronegative or who are judged to be positive based on the results of unproven laboratory tests or test using criteria not approved by the CDC and FDA, e.g., CD57 counts, Lyme urinary antigen tests, or the detection of non-viable amorphous artifacts in blood specimens. Not cured of their “Lyme disease” by widely accepted treatment regimens recommended by the IDSA, most likely because they don’t have Lyme disease in the first place, they seek relief by resorting to unorthodox and unproven therapeutic approaches, many of which are unsafe. They even demand that health insurance companies pay for such treatments. All this has created much confusion if not chaos. Witness the outcome of a recent attempt on this website to develop a patient initiated questionnaire to diagnose “Lyme disease”. That questionnaire must have had at least 1,000 entries, which reflects the huge disagreement among those who think they have Lyme disease. Clearly, it is time to “wipe the slate clean” of this mess and move in a different direction.

Since it is impossible to establish and maintain a reasonable dialog between those holding historical views on Lyme disease and those belonging to this other rather heterogenous group of “believers”, I suggest that there be an amicable -- but complete and total-- separation between both groups; those who adhere to the traditional views of Lyme disease, which already has a name as well as a large body of experimental evidence of its own, and those who ought to be differentiated by having a new name of their own choosing, one they feel best describes what Horowitz now calls MSIDS. I respectfully suggest the term, medically undefined syndromes (MUS), so that they can take advantage of the multidisciplinary approach proposed in a recent report on chronic pain by the Institute of Medicine (IOM) and perhaps partner with those working on this approach (http://iom.nationalacademies.org/Report ... earch.aspx ). Such an approach is now being implemented by the NIH to examine syndromes such as fibromyalgia, chronic fatigue syndrome etc. in great detail -- to develop biomarkers for accurately diagnosing these medical conditions so that they can be identified and treated promptly and more effectively by primary care physicians. Perhaps by partnering with real scientists in this new venture, tangible progress can be made.
Last edited by Henry on Tue 22 Dec 2015 0:19, edited 1 time in total.

Lorima
Posts: 914
Joined: Mon 29 Oct 2007 20:47

Re: A Modest Proposal

Post by Lorima » Mon 21 Dec 2015 21:01

I'm wondering if you know the original reference for the phrase "A Modest Proposal." If not, I suggest you look it up.
;)
"I have to understand the world, you see."
Richard Feynman

duncan
Posts: 1370
Joined: Wed 5 Sep 2012 18:48

Re: A Modest Proposal

Post by duncan » Mon 21 Dec 2015 21:04

He should also look up what "universally" means. :D

And no one is buying into that MUS crap, except perhaps members of the BPS school.

Henry
Posts: 1108
Joined: Thu 10 Nov 2011 18:49

Re: A Modest Proposal

Post by Henry » Mon 21 Dec 2015 23:47

My, my............. Your comments are just 3 minutes apart! You must have found it necessary to "consult" with each other on this proposal that is more likely help the little girl in the wheel chair than anything you have to offer. No matter. Your response is a reflection of small minds at play -- playing with words instead of substance. So, I didn't revise the title -- which I rather like-- but I substituted "widely" for "universally"-- as a gesture of good will, although universally really wasn't too far off the mark.

duncan
Posts: 1370
Joined: Wed 5 Sep 2012 18:48

Re: A Modest Proposal

Post by duncan » Tue 22 Dec 2015 0:56

So much for being concerned about accuracy. 8-)

Lorima
Posts: 914
Joined: Mon 29 Oct 2007 20:47

Re: A Modest Proposal

Post by Lorima » Tue 22 Dec 2015 4:29

Oh Henry, you poor dear.
Sounds like projection to me.
"I have to understand the world, you see."
Richard Feynman

duncan
Posts: 1370
Joined: Wed 5 Sep 2012 18:48

Re: A Modest Proposal

Post by duncan » Tue 22 Dec 2015 5:01

I'd put my money on a nasty case of false illness beliefs.

Henry, have you considered cognitive behavioral therapy?

Henry
Posts: 1108
Joined: Thu 10 Nov 2011 18:49

Re: A Modest Proposal

Post by Henry » Tue 22 Dec 2015 14:26

No need to become nasty and resort to feeble distractions when you can't come up with an intelligent response to the issue at hand.

duncan
Posts: 1370
Joined: Wed 5 Sep 2012 18:48

Re: A Modest Proposal

Post by duncan » Tue 22 Dec 2015 14:59

There is no issue at hand, Henry, unless you are including your intransigence to acknowledge there are people sick with Lyme being told they don't have Lyme, or they have something like PTLDS.

Making a suggestion that could render this situation even worse by assigning an MUS label to Lyme patients is not only unwarranted, not only based on what many feel are faulty beliefs about this illness, it arguably could be perceived as feeding the polemics which sadly qualify the Lyme environment.

Medically unexplained symptoms are just that: unexplained. People infected with Borrelia - or other TBD's like babesia and bartonella - by definition have explanations for their symptoms.

Lorima
Posts: 914
Joined: Mon 29 Oct 2007 20:47

Re: A Modest Proposal

Post by Lorima » Tue 22 Dec 2015 15:22

Wow, Henry, you've already forgotten who opened the door to petty insults:
Henry wrote:My, my............. Your comments are just 3 minutes apart! You must have found it necessary to "consult" with each other on this proposal that is more likely help the little girl in the wheel chair than anything you have to offer. No matter. Your response is a reflection of small minds at play -- playing with words instead of substance.
Is this selective amnesia, or a more general memory problem? Not to knock people with short-term memory problems - it's just that they probably aren't going to come off well, in a discussion like this. Humility would suit you better, than defending the one true faith about LD.

I'm not responding to your proposal, except to say it's just one more LD denial strategy. I wonder if this is a preview of the latest ALDF/IDSA talking point? Seems likely, knowing Henry's role.
"I have to understand the world, you see."
Richard Feynman

Post Reply