A Modest Proposal

General or non-medical topics with information and discussion related to Lyme disease and other tick-borne diseases.
Lorima
Posts: 914
Joined: Mon 29 Oct 2007 20:47

Re: A Modest Proposal

Post by Lorima » Wed 23 Dec 2015 23:06

Shoot, I would have liked to see Henry explain Bayesian analysis and how estimations of pre-test probability affect test interpretation. ;)
"I have to understand the world, you see."
Richard Feynman

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

Re: A Modest Proposal

Post by Henry » Thu 24 Dec 2015 15:14

No need to bother. That's already been done in the article by Schriefer that I cited earlier.

dlf
Posts: 294
Joined: Sun 7 Apr 2013 15:36

Re: A Modest Proposal

Post by dlf » Thu 24 Dec 2015 20:36

This is not the first time Henry has suggested a version of his rather satirical 'modest' proposal. But, it is the first time he has made the crazy recommendation that the Lyme community (and those of us who clearly have Lyme) capitulate and accept MUS as a viable alternative. Remember this thread from 2014.
CAN v CLD

http://www.lymeneteurope.org/forum/view ... 416#p38416

Henry, if you want to ensure that the "Lyme disease" you know, (love), and refer to (as defined by Dr. Steere et al) remains free of all non-conventional and/or non-specific attributions, I would suggest you are plugging your sales pitch to the wrong audience. You need to be advocating a name change to the IDSA and the CDC; not us.

Just think about it..........the Lyme disease you refer to is essentially solely a North American B. burgdorferi sensu stricto disease that is limited pretty much to the North-east and Mid-west U. S. and is defined by antibody reactivity to B31 strain, OspC type A. So much might be solved by finally admitting that your definition of 'Lyme disease' does not pertain to any strains of B. burgdorferi sensu stricto that might not be detected by current two-tier serology, or that may persist, or to any of the broader B. burgdorferi sensu lato infections at all. By renaming it, your colleagues could also make their definitions even tighter and more stringent.

The WHO at one point stated that "Lyme" as a name for this disease is not exactly politically correct, citing that disease names should not reflect specific geographical locations.

The timing would be perfect.

When the IDSA guidelines are finally re-written they could introduce the 'new' nomenclature. I would personally suggest that they could call it Steere's disease to differentiate it from all these other syndromes and conditions caused by B. burgdorferi that your colleagues deem as being unacceptable to be termed 'Lyme disease'.

Actually, there is already a precidence for the name. Why not just make it official? Dr. Steere would probably love the idea. :)

http://www.rightdiagnosis.com/medical/s ... isease.htm

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

Re: A Modest Proposal

Post by Henry » Sat 26 Dec 2015 17:22

dlf: Unfortunately, you missed the whole point of this discussion, namely, that it is Horowitz who has "contaminated" the scientific literature on Lyme disease by redefining it as MSIDS -- with absolutely NO evidence to support such a claim. None, zip, nada........It may help him peddle his books on Amazon to gullible "believers", and thereby contribute to "teaching to the controversy" ( http://www.slate.com/articles/health_an ... dotes.html ). But, that's not what scientific proof is all about -- not by any means.

Allen Steere , who was trained as a rheumatologist, did considerable clinical research on Lyme arthritis from the very beginning and has been rightly associated and praised for his many accomplishments in that regard (see: Steere, AC, Hardin, JA, and Malawista "Lyme arthritis: a new clinical entity", Hops. Pract. 13: 143-158, 1978; and, Steere, AC et al. "Lyme arthritis: an epidemic of oligoarticular arthritis in children and adults in three Connecticut communities", Arthr. Rheum. 20: 7-17, 1977). A PubMed search of the literature reveals that Allen Steer has more than 230 peer-reviewed scientific publications on Lyme disease. He would never say such a thing, but he has probably forgotten more on Lyme disease -- which is not very much-- that you ever "learned".

nnecker
Posts: 215
Joined: Wed 19 Dec 2012 22:57

Re: A Modest Proposal

Post by nnecker » Sat 26 Dec 2015 21:48

Probably a patient of Horowitz and an avid reader of Wientraub:


http://flash.lymenet.org/ubb/ultimatebb ... c/1/133194


Author Topic: Sigh. Do I NOT have Lyme? Please help me think about this.
Jordana
LymeNut.kook Contributor
Member # 45305


A couple days ago I saw two doctors in a row: one ID doc, and one walk-in clinic doc who was SHOCKED at how long I had been on Bactrim.

Neither one believed for a *second* that I had Lyme disease. They were seriously so unimpressed with this idea I felt like I was talking to aliens, or I was the alien.

The walkin clinic doc shut me down when I was explaining to her about Lyme and why I thought I had it. She said she was from Connecticut and that she knew all about Lyme. She clearly did not think I had Lyme and did not think I should have been taking Bactrim for it even if I did.

That made me look back at everything I had been doing.

I've been hanging around this board since February trying to figure out what is wrong with me. STRANGE symptoms, including facial palsy, neuro symptoms and diarrhea for six months straight, eye disturbances, blurred vision, double vision, floaters, sketchy bladder ( now) palpitations and vibrating at night.

I have been checked out by every doctor imaginable -- neuro docs, endo docs, heart monitors, screened for celiac, Lyme, Lupus.... everything is at somewhat "normal" levels except for a couple of things.

Positive ANA
Positive for anti-ssb antibodies -- Sjogrens, trace reading
Positive for anti-achr antibodies -- myasthenia gravis diagnostic though this was considered "borderline" plus I had a somewhat normal EMG/SFEMG
Iron Deficiency Anemia
Now losing WBCs and neutrophils,both slightly low on last reading.
Losing potassium
Adrenal adenoma (benign, non-active)
Multinodular goiter
Actively in Menopause, first or second year.

Negative titers for all co-infections.

Borrelia Western Blot in Feb:

41, 66 IGG KdA positive
IGM NEGATIVE
ELISA Negative in Feb.

Armin Labs NEGATIVE seraspot
NEGATIVE co-infections
NEGATIVE elispot for all but one:

Borrelia Fully Antigen -- borderline at 2 ref < 2

Positive monospot
Positive cytomegalovirus
High coxsackie titers

Retest for Lyme at Mayo Clinic December 2015:

CD6 ELISA NEGATIVE

Western Blot Mayo Clinic December 2015:

IGM: 41 KdA
IGG: 41 KdA

Positive response to Bactrim antibiotics.

CD57: 61

In October my gallbladder went crazy and the ER admitted me and yanked it out. After six months of near-scary diarrhea the stomach stuff cleared up a little bit.

Symptoms now after 10 days of Bactrim are mostly muscle weakness -- my neck shoulders and hips just straining, sometimes my arms ache with normal activity.

Hand and foot stiffness

Chills

Blood pressure all over the place -- sometimes fine, sometimes high, within a couple hours.

Brain fog -- losing names of things.

Ratchety movement, especially my neck.

Sort of "dementia" -- low interest in most things.

Showers make me exhausted, etc.

Bladder herx?

Blurred vision and floaters - eyes won't focus.

Jaw stiffness; muscle spasms still on right side of face and neck.

Crepitus

Both of these doctors, and in fact the LLMD, all said that I was not presenting like a "Lyme patient."

I don't know what to think, seriously.
Catgirl
Frequent Contributor (1K+ posts)
Member # 31149


How long have you been on any abx? Usually a couple of months after taking them a true LLMD can re test you through IgeneX. I'm no doc, but it sounds like you have lyme and then some.
Jordana
LymeNut Contributor
Member # 45305


Thanks for your answer. The LLMD hasn't said I have Lyme and is treating me with 90 days of Bactrim.
WPinVA
Frequent Contributor (1K+ posts)
Member # 33581



I would bet you have more than one thing going on. Most of us do. Highly recommend the book "Why Can't I Get Better."(By Dr Horowitz)

dlf
Posts: 294
Joined: Sun 7 Apr 2013 15:36

Re: A Modest Proposal

Post by dlf » Sun 27 Dec 2015 7:28

Henry wrote:
dlf: Unfortunately, you missed the whole point of this discussion, namely, that it is Horowitz who has "contaminated" the scientific literature on Lyme disease by redefining it as MSIDS -- with absolutely NO evidence to support such a claim. None, zip, nada..........
Henry, no, I figured out very quickly where you were coming from in making your "modest" proposal, so I didn't miss your point. I simply don't see your characterization that Dr. Horowitz has redefined Lyme disease as being valid. In his book , Dr. Horowitz has proposed a model for evaluation of a chronic illness syndrome which he has given the name multiple systemic infectious disease syndrome (MSIDS). This syndrome that he has named and that he discusses may (or may not) include a possible diagnosis of Lyme disease depending on the individual patient.

His Lyme - MSIDS questionaire is only a tool to try to help patients and their physicians sort through the jumble of symptoms, clinical findings and patient history to figure out whether there is a possibility of a patient's illness actually being due to a tick-borne infection. This tool doesn't redefine anything.

As to your claim that Horowitz has "contaminated" the scientific literature.......umm, I think I need to ask; what scientific literature? You said yourself that he hasn't written any.

Simply put, your vitriol is misplaced. Take a look.........Chapter one of his book:

WHY CAN'T I GET BETTER? SOLVING THE MYSTERY OF LYME AND CHRONIC DISEASE
Dr. Richard Horowitz, MD
St. Martin's Press - Chapter 1
http://us.macmillan.com/excerpt?isbn=9781250019400

Henry wrote, in his introduction to this thread:
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.


This distrust comes from the very simple reality that the testing has important limitations to its reliability and the treatment guidelines work for some patients some of the time, but leave others without resolution or options. Patients with confirmed Lyme disease can be seronegative and 10-20% are acknowledged by the CDC to not have resolution of symptoms even when diagnosed and treated early. The patients that suffer the most are primarily those that have fallen through the cracks of early diagnosis and who don't get diagnosed until late stage.

If you think that these guidelines are "universally accepted" by national and international experts on Lyme disease, I think you are suffering with false consensus beliefs and need to climb down from your rarified tower. You really need to observe what has happened to the range expansion of Borrelia burgdorferi sensu lato species and the increasing numbers, combinations and complexity of the pathogens being transmitted by ticks worldwide. The situation has evolved; as have the pathogens. Take a close look at some of the more recent studies published in the last five to ten years.

Henry also wrote:
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.
Henry, since you believe it is impossible for the two sides to have a reasonable dialogue and you obviously have an insider's view, I guess that must be the case. It is unfortunate, because many of the problems and the confusion stem from the numerous assumptions that were made when the original work on Lyme disease was undertaken and when the historical and traditional views were just being developed.

The science has also evolved in the interim. If you want to lay blame for the controversy, you could probably start with the state of the science and the available tools when Lyme was first being characterized and defined. There was little to no understanding of the differences between sensu lato species or strain variations and so Lyme was considered right from the beginning as an all encompassing disease that included a genetically fairly heterogeneous group of closely related spirochetes. The development of PCR testing and MLST and the ability to determine OspC types has shown us that not all of these species and strains are equally reactive to two-tier testing using BB strain B31. New species and strains are continuing to be found and characterized and the symptomology and epidemiology for a number of them still haven't been completely defined, including for B. bissettii and B. kurtenbachii. There is still much to learn about Borrelia burgdorferi and it's effects on the human immune system. You write as if the entire body of Lyme disease questions have been put to rest.

When this following article was written, researchers were typing these bacteria by microscopic examination of morphology. I hope we now all know that these bacteria are considerably more complex than was understood when the first treatment studies were undertaken and when Lyme was considered to be pretty much a self-resolving illness because some patients never developed disseminated disease and some were completely asymptomatic even as others were suffering with highly pathogenic disease. There is absolutely no scientific justification for lumping all manifestations of Lyme together and saying that it is a self-resolving disease now that we have learned that different species and strains can be variably pathogenic.

Burgdorfer W. Discovery of the Lyme disease spirochete and its relation to tick vectors. The Yale Journal of Biology and Medicine. 1984;57(4):515-520.
http://www.ncbi.nlm.nih.gov/pmc/article ... 0-0070.pdf

CDC - MMWR - June 14, 1996 / 45(23);481-484
Lyme Disease -- United States, 1995
http://www.cdc.gov/mmwr/preview/mmwrhtml/00042555.htm

Lyme disease (LD) is caused by the tickborne spirochete Borrelia burgdorferi sensu lato.

In claiming that the historical view of Lyme disease encompasses the full complement of Borrelia burgdorferi sensu lato infections the early researchers were overstating what they had provided scientific evidence for. They made a lot of wrong assumptions, only one of which was, that by defining everything in terms of B. burgdorferi sensu stricto strain B31 this would provide diagnostic and treatment answers for all Lyme infections under all circumstances.

If the science of "Lyme disease" has been completely solved in your mind, never to advance any further and that version is of Dr. Steere's contrivance, then accept that it only relates to a single limited species and strain and accordingly re-name this "Steere's disease". Please, let's stop pretending that this traditional historical view defines the entire Bb sensu lato clade.

Researchers who understand that there are broader aspects still left to discover and study about Lyme could then decide on a suitable name to differentiate from Dr. Steere's view. Similar to the nomenclature used for non-Hodgkin lymphoma (of which there are something like 30 variations), I think the idea of "non-Steere's Lyme borreliosis" might just work for future research avenues and would provide the differentiation you seek.

Henry wrote:
Allen Steere , who was trained as a rheumatologist, did considerable clinical research on Lyme arthritis from the very beginning and has been rightly associated and praised for his many accomplishments in that regard (see: Steere, AC, Hardin, JA, and Malawista "Lyme arthritis: a new clinical entity", Hops. Pract. 13: 143-158, 1978; and, Steere, AC et al. "Lyme arthritis: an epidemic of oligoarticular arthritis in children and adults in three Connecticut communities", Arthr. Rheum. 20: 7-17, 1977).
Henry, personally I think it is terribly ironic that that you chose this particular article to exemplify Dr. Steere's work:

http://www.ncbi.nlm.nih.gov/pubmed/658948

Hosp Pract. 1978 Apr;13(4):143-58.
Lyme arthritis: a new clinical entity.
Steere AC, Hardin JA, Malawista SE.

Abstract

Named for the Connecticut town where the first identified cases occurred in 1972, this disorder has since been found elsewhere and may be caused by a virus transmitted by ticks. Attacks are often preceded by erythema chronicum migrans and are seldom prolonged, though they may recur. Symptomatic treatment only is advised, except in the rare instances of severe neurologic complications or myocardial conduction abnormality.

:shock: :bonk:

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

Re: A Modest Proposal

Post by Henry » Sun 27 Dec 2015 18:24

Once again, you fail to grasp the main point, i.e., there is no evidence -- based on the results of independent carefully controlled studies-- to support the views of Horowitz and his disciples . None whatsoever. What he is doing is treating gullible people with his unproven remedies based on unsubstantiated "hunches " or "gut feelings" in the hope that a few will come forward to claim they've experienced some improvement (placebo effect?). He is "using people like guinea pigs".

Now, you may not be trouble by such unethical behavior and are willing to submit your body --- and the bodies of your loved ones-- to such experimentation based on faith alone; that is your choice. However, I have a higher standard of proof. I challenge you to ask him to prove that his recommendations are beneficial and safe. Don't hold your breath waiting for such proof.........Don't you think that if he were right, everyone would be following his recommendations and there would be no controversy?

duncan
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Joined: Wed 5 Sep 2012 18:48

Re: A Modest Proposal

Post by duncan » Sun 27 Dec 2015 19:13

Henry, don't you think if the IDSA Guidelines were right, everyone would be following their recommendations and there would be no controversy?

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

Re: A Modest Proposal

Post by Henry » Mon 28 Dec 2015 0:14

Duncan: As I have indicated in a previous posting, the IDSA guidelines are accepted by national and international experts on Lyme disease, i.e., those who have documented and extensive basic and clinical research experience dealing with Lyme disease. These are people who just might know what they are talking about, don't you think?

There are more than 240 literature citations to support the recommendations made in the IDSA guidelines. By contrast, the recent edition of the ILADS guidelines was constructed by a rather undistinguished group with very few research publications dealing with Lyme disease; most of them have none. More important, all of their recommendations are supported by very low-quality evidence, as they themselves admit ( http://www.guideline.gov/content.aspx?id=49320 ). That hardly inspires confidence, wouldn't you say?

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

Re: A Modest Proposal

Post by duncan » Mon 28 Dec 2015 1:02

And yet controversy grows, as do the ranks of the infected and medically disenfranchised - not to mention the lists of clinicians who now offer treatment that don't conform to dated protocols.

Suggestions like trying to shoehorn people infected with TBDs into an MUS psych-mold arguably only worsen the perception of aging Lyme-dogma supporters. The voice of the patients, backed by new data that may undo the old, is with greater frequency than ever before finding its way into international coverage. More and more people are learning - including independent researchers and clinicians and legislators.

There seems to be a shift in the winds of Lyme sentiment, Henry. Who do you imagine that shift favors?

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