Re: Christine Jennings ends hunger strike

a_weisman_at_yahoo.com
Date: 03/12/05 

Date: 12 Mar 2005 14:03:53 -0800

derdrittemann2003@yahoo.com wrote:
> a_weisman@yahoo.com wrote:
> >>
> >
> > "On the other hand, there sure are lots of questions to ask, lots
of
> > fair questions.
> >
> > I don't happen to think that the cystic forms one is the most
> pressing
> > but I do think that the area is worthy of research (I don't think
it
> is
> > the most pressing because I don't think it is the most glaring
lapse,
> > as I've said, the fact that CDC and NIH have NEVER spent a single
> penny
> > on the question of sexual transmission, particularly the CDC, well
> THAT
> > proves total misfeasance)".
>
> The problem, as I see it...and seems that you are expressing it
> here...is that lyme patients feel themselves locked out of a process
> that is supposed to help them.

Yes no doubt about it.

However, I think that if you look around the world of disease advocacy
organizations, most do NOT spend a lot of time lobbying Congress to put
the screws to NIH for more research money. Sure, occasionally they'll
send their celebrity spokesperson over and Congress will hear their
testimony, pose w the celeb for some nice photo ops, and allot $10 M.

BUT: first, NIH rarely spends that money on what Congress told em to
spend it on. Ane, when they do, it usually doesn't go to the research
that the disease advocates would choose. In fact, often it goes to
research they don't like (sound familiar?).

And, in my opinion, and I feel STRONGLY about this, it is the WORST way
to decide what should be funded--by what celebrity happens to have a
particular disease (or be a spokesperson for it because a relative or a
friend has it).

Neither Congress NOR celebrity influence should be the deciding factor
in what is, and what is not, a priority for funding.

Why not? Well, because Congress is NOT expert in this. The NIH SHOULD
be. Why else? Because given limited resources and competing concerns
the deciding factor should NOT be a particular celebrity, but a
decision by NIH as to what are priorities.

Did it make sense to allocate so much money to spinal cord research
because a popular actor (chris reeves "superman") happened to fall off
his horse? Spinal cord injuries are DEVASTATING. It would be great if
we could cure those folks, give them a better quality of life etc.

But how many people are affected by it? Absent the celebrity factor,
where does it rank in the health priorities and issues facing this
nation?

Should the difference in funding be based on him falling off his horse
and breaking his neck vs falling off his horse onto a tick?

Of course not.

In fact, this is one way that NIH is politicized improperly (another is
that the christian right thinks that using stem cells is "morally
wrong" and that it amounts to taking life, ignoring the lives it might
help, so a POLITICAL decision influenced heavily also by religion, is
made, rather than a scientific/medical decision.

Does NIH do a good job at setting priorities and directions for
research etc?

Perhaps not. But the solution to that is NOT to turn the job over to
congress or base it on celebrity concerns. It is for Congress to engage
in more effective oversight of NIH and call them on the carpet.

Which is part of what you're saying...

But we part ways on this issue because I don't think Congress IS
providing effective oversight or ever has with respect to NIH/CDC.

And the fine line between oversight and setting the priorities is a
difficult one. If congress were TRULY providing oversight rather than
responding to vocal constitutencies, that might be a a good thing. But
the most Congress is doing is responding to vocal constitutencies or
special interests. They don't have the substantive expertise to do
otherwise, nor the political will.

> Federal monies are fed through the auspices of the NIH into the hands
> of their "oppressors"...or "enemies"...so that further "research" can
> be done that will support a single, solitary view and suppress other
> views.

Right. So I do NOT want more of that. The likely result of a hearing
(what would be viewed as "success" would be demanding MORE NIH money.
Been there, done that (Lymeland has). And as a result we got the
Klempner study.

Did ANYTHING that Phyllis or Carl say make you think ANY lessons were
learned (other than they perhaps wouldn't trust klempner quite as
easily next time--but what about a new guy?)

> And...what I am saying is that NIH is accountable to
> Congress...Congress holds the purse strings.

Yes theoretically this is exactly how government is s'posed to work.

Of course, Congress allocates money to the overall NIH budget and makes
non binding suggestions on how the money is to be spent but really
doesn't control it. And they can allocate money that NIH chooses NOT to
spend. Or spends on other things.

The CFS people had a "success" and guess what happened? CDC spent the
CFS money on other things (then lied about it--but got caught).

> Yes, there certainly are problems with this strategy. But...in my
> opinion, you are really screwing up if you don't at least attempt it.
> You can't say you have failed until you have tried.

Well, I do think it has been tried. And failed.

At the national level AND at the State Level. They held hearings in
NYS. They still have no bill. And from all reports OPMC has NOT backed
off on prosecutions.

> It is sort of a minimum requirement...at present there is absolutely
no
> effort by anyone to hold Steere, Klempner accountable...or even
> QUESTION them as to WHY certain things were done...not done.

And I don't think that anyone is going to "hold anyone accountable" in
a Congressional hearing. And perhaps you'll get "answers" but I doubt
they'll be very satisfying at all.

> On the "cystic" stuff. I certainly don't intend to suggest that this
is
> THE "answer" to the exclusion of all others.

Agreed.

> It is an example of GLARING BIAS, however. The failure to pursue this
> suggests to me that "I don't want to look at anything that might
prove
> me wrong".

Well that's my attitude about the sexual and vertical transmission
stuff--I think that the failure to pursue it represents a failure, a
GLARING failure in a CRITICAL public health issue.

So I get the point.

BUT, I think that the reason for not pursuing the cystic stuff is glib
and easy: the work on this issue consists of a few isolated reports in
European journals which hasn't been reproduced elsewhere and is of
uncertain significance. Prior to researching this, there are a number
of other priorities when it comes to even more basic science issues. It
is likely to be found to be error or artifact and from the scientific
perspective the isolated reports just don't reach a level where this
issue is really on anyone's radar screen.

Or something like that.

Now, compare any answer to the sexual transmission issue.

What POSSIBLE excuse is there for the #1 public health agency not
spending a single penny to research whether or not Lyme can be sexually
transmitted? Or ignoring the existing research about vertical
transmission? Given the similarities to syphillis, and the incidence of
husband, wife, child all having Lyme, while there ARE other POSSIBLE
explanations, there is NO STUDY on the issue by CDC or NIH.

And IF it happens that is a HUGE public health concern!

> Spirochetal conversion in the presence of antibiotics has been
> established in vitro.

In what amounts to isolated reports.

I find them credible. But not reproduced elsewhere. And probably not
having reached the quantuum of evidence to establish it for a fact.

> Steere couldn't find "live spirochetes" after 4
> weeks of doxy...BUT HOW ABOUT BB CONVERTED TO CYSTS? Oh, sorry,
wasn't
> really looking for them.

Well there are plenty of reports of Bb surving more than four weeks of
doxy. As to the cysts, well, given an absence of evidence that they
have any clinical significance, why would he be looking for them? If he
found them, what would that prove? We don't know that cysts are
pathogenic. Scientific experimentation doesn't look for EVERYTHING
automatically.

> In addition, you have a problem of the DNA/PCR identification of
cystic
> forms...so yes, potentially there are a lot of explanations there...

Potentially, yes. Honestly there are many many other potential
explanations. That Yale report recently shows that there is some
exploration of some of them. I don't think that objectively it is a
HUGE GLARING error to have pursued one before the other (though I
personally might have looked for something else first, mabye even
cysts).

See below:

***********************************************************

3 December 2004

STUDY SUPPORTS CHRONIC LYME

Protective Niche for Borrelia burgdorferi to Evade Humoral Immunity

Fang Ting Liang*, Eric L. Brown, Tian Wang*, Renato V. Iozzo and Erol
Fikrig*

>>From the Department of Internal Medicine,* Section of Rheumatology,
Yale University School of Medicine, New Haven, Connecticut; the
Center for Extracellular Matrix Biology, Texas A&M University System
Health Science Center, Albert B. Alkek Institute of Biosciences and
Technology, Houston, Texas; and the Department of Pathology, Anatomy,
and Cell Biology, Thomas Jefferson University, Philadelphia,
Pennsylvania

The Lyme disease spirochete, Borrelia burgdorferi, is an extracellular
microbe that causes persistent infection despite the development of
strong immune responses against the bacterium. B. burgdorferi
expresses several ligand-binding lipoproteins, including the decorin-
binding proteins (Dbps) A and B, which may mediate attachment to
decorin, a major component of the host extracellular matrix during
murine infection. We show that B. burgdorferi was better protected in
the joints and skin, two tissues with a higher decorin expression,
than in the urinary bladder and heart, two tissues with a lower
decorin expression, during chronic infection of wild-type mice.

Targeted disruption of decorin alone completely abolished
the protective niche in chronically infected decorin-deficient mice
but did not affect the spirochete burden during early infection. The
nature of protection appeared to be specific because the spirochetes
with higher outer surface protein C expression were not protected
while the protective niche seemed to favor the spirochetes with a
higher dbpA expression during chronic infection.

These data suggest that spirochetal DbpA may interact with host
decorin during infection and such interactions could be a mechanism
that B. burgdorferi uses to evade humoral immunity and establish
chronic infection.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Yale University; Borrelia burgdorferi changes antigens based on host
immune response 08 December 2004 Biotech Week Copyright 2004, Biotech
Week via NewsRx.com (NewsRx.com & NewsRx.net)

-- Borrelia burgdorferi changes its surface antigenic expression in
response to host immune responses. The Lyme disease spirochete,
Borrelia burgdorferi, causes persistent mammalian infection despite
the development of vigorous immune responses against the pathogen. To
examine spirochetal phenotypes that dominate in the hostile immune
environment, the mRNA transcripts of four prototypic surface
lipoproteins, decorin-binding protein A (DbpA), outer surface protein
C (OspC), BBF01, and VlsE, were analyzed by quantitative reverse
transcription-PCR under various immune conditions. We demonstrate
that B. burgdorferi changes its surface antigenic expression in
response to immune attack," investigators in the United States
report. TD "dbpA expression was unchanged while the spirochetes
decreased ospC expression by 446 times and increased BBF01 and vlsE
expression up to 20 and 32 times, respectively, under the influence
of immune pressure generated in immunocompetent mice during
infection," stated Fang Ting Liang and collaborators at Yale
University, Centocor, Inc., and the Centers for Disease Control and
Prevention. "This change in antigenic expression could be induced by
passively immunizing infected severe combined immunodeficiency mice
with specific Borrelia antisera or OspC antibody and appears to allow
B. burgdorferi to resist immune attack." Liang and associates
published their study in Infection and Immunity (Borrelia burgdorferi
changes its surface antigenic expression in response to host immune
responses.

Infec Immunity, 2004;72(10):5759-5767). For additional information,
contact Erol Fikrig, Section of Rheumatology, Department of Internal
Medicine, Yale University School of Medicine, S525A, 300 Cedar
Street, New Haven, CT 06520-8031, USA.

E-mail: erol.fikrig@y.... The publisher of the journal Infection and
Immunity can be contacted at: American Society for Microbiology, 1752
N Street NW, Washington, DC 20036-2904, USA. The information in this
article comes under the major subject areas of Lyme Disease, Tick-
Borne Disease, Zoonosis, Lyme Disease Vaccine, Vaccine Development,
Proteomics, Immunotherapy, and Immunology. This article was prepared
by Biotech Week editors from staff and other reports. Copyright 2004,
Biotech Week via NewsRx.com & NewsRx.net.

Expanded Reporting | Yale University | Immunology | Bacteriology |
Infectious Disease | Neurology | All News | Professional News |
Biotechwee PUB NewsRx.com For assistance, access Factiva's Membership
Circle <http://customer.factiva.com> .

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~­~~~~~~~~~~~~~~~~
http://yalemedicalgroup.org/ne­ws/ymg_fikrig.html

Lyme Disease Receptor Identified in Tick Guts

[November 2004] Researchers at Yale School of Medicine have
identified a Lyme disease receptor called TROSPA that is used by
disease agents to invade ticks.

Lyme disease, the most common tick-borne disease in the United
States, is caused by spirochete bacteria Borrelia burgdorferi, which
also cause arthritis in humans. The purpose of the study, published
November 12 in the journal Cell, was to identify how Lyme disease
pathogens survive inside ticks.

"We identified a receptor inside the tick gut that the spirochete
bacteria use to colonize or invade ticks," said principal
investigator Erol Fikrig, M.D., professor of internal
medicine/rheumatology and in the Section of Microbial Pathogenesis,
and Department of Epidemiology and Public Health at Yale School of
Medicine.

"When we eliminated or blocked the receptor in the ticks, they were
no longer able to carry the Lyme disease agent Borellia
burgforferi."

"This opens up potential new avenues to disrupt the Borellia's life
cycle and offers strategies for improving diagnosis and treatment of
Lyme disease," Fikrig added.

To characterize the Lyme disease receptor, the team cloned the gene
for the receptor from ticks. After they expressed the purified
receptor gene, they showed that the Lyme disease agent Borellia
burgforferi binds to the receptor. "When we blocked the receptors
with antibodies or when we used RNA interference to knock the
receptor out of the ticks, they no longer carried Borellia
burgforferi," said Fikrig.

"We are excited to learn more about the life cycle of this important
pathogen," Fikrig added. "This information can also be used to study
other vector-borne diseases such as West Nile virus and Malaria,"
Fikrig added.

Other authors on the study included Utpal Pal, Xin Li, Tian Wang,
Ruth R. Montgomery, Nandhini Ramamoorthi, Aravinda M. deSilva, Fukai
Bao, Xiaofeng Yang, Marc Pypaert, Deepti Pradhan, Fred S. Kantor, Sam
Telford and John F. Anderson.

Citation: Cell, No. 19 Volume 4, November 12, 2004

More about Erol Fikrig, MD

More about Rheumatology at Yale

More about Lyme Disease

*************************************************************************

> ...and WHY haven't we gone into it when it is so well-documented in
> Europe?

I don't think that it is considered "well documented' anywhere.

Other than the work of the Brorson's in Norway, what is the rest of the
documentation for this?

> But what I am saying is that you ask this to "rough them up"...try to
> level the playing field...a POLITICAL, rather than scientific
question.

That I get. I think the sexual and vertical transmission questions are
something EVERYONE can understand and which really roughs them up.

The cyst stuff, and I don't reject it, is too obscure to have much
political impact.

The Congress is NOT filled with scientific or medical experts much less
experts about Lyme (yes Bill Frist is a "doctor" and conducted
experiments on cats that ***!).

I think that something else relatively obscure CAN be boiled down into
something anyone could grasp.

Klempner's study selected out those thought to have active infection.

How could he justify a "treatment study" using anti infective
treatment, of those thought not to be infected?

How does that make ANY sense?

I think people can "get" that. But what you call a glaring omission on
cysts? I think that's a political dud, easily glibly dismissed.

I think people "get" the sexual and vertical transmission issue and can
grasp the GLARING omission there. That one shows CDC didn't drop the
ball--they NEVER picked it up in the first place.

> > "Bottom line: NIH/CDC, doctors, scientists aren't going to respond
> well
> > to being proven wrong, or to any resulting dictate as to their
> > behavior".
>
> Too bad. If they're wrong and arrogant...I'm sorry, should I look the
> other way while we all suffer? Bad manners on my part to bring it up?
> (Rhetorical..I know you don't mean this).

Well actually I do mean that I think scientists particularly at NIH and
CDC but doctors everywhere would automatically resent being told how to
do their jobs by politicians and non scientists.

I think that the mandate that Greg talked about and says led to the NIH
study, was responded to by sabotaging the study (and that's the LAST
time anyone with sense will force them to do a study they don't want to
do) .

Wouldn't you resent it if Congress and laypeople told you what the law
was and how to practice it? I think so--witness the recent exchange
with Bruce (eugeneshapiroisapig) and your reaction (and mine) at the
RICO balderdash.

> >" And it would set a bad precedent if it did happen".
>
> I couldn't disagree more strongly. What I am talking about is
utilizing
> the very checks and balance mechanisms that are supposed to ensure
that
> NIH/CDC doesn't start dictating medical policy on the national
> level...allows individual doctors to pursue their art.

I think that CDC is expected to set medical policy and treatment
regimens in a wide range of areas at least as guidelines. And NIH is
expected to pursue research.

I don't think anyone can prove that CDC is exceeding those bounds, that
CDC is coordinating enforcement efforts by OPMC or anything like that.

CDC treatment recommendations are part of their mission. As they put
it:

http://www.cdc.gov/aboutcdc.htm

"providing credible information to enhance health decisions"

and

"CDC seeks to accomplish its mission by working with partners
throughout the nation and world to monitor health, detect and
investigate health problems, conduct research to enhance prevention,
develop and advocate sound public health policies, implement prevention
strategies, promote healthy behaviors, foster safe and healthful
environments, and provide leadership and training"

and

"
CDC Provides Credible Information to Enhance Health Decisions

We recognize that the best, most up-to-date health information is
meaningless unless it is meaningful and accessible to the people it is
meant to serve. By working with public health and grassroots partners,
and by leveraging the voices of the internet, and communication media,
we ensure the best health and safety information is accessible to the
communities and people who need it every day."

As to checks and balances, sure, government is S'POSED to work that
way.

Did you see much effective check or balance over the CDC utter failure
this year on the flu vaccine?

Do you expect much more with Lyme?

Flu kills 35-40,000 people a year!

> No. This is what this process is for...to call those who are making
> policy in before the people's representatives and hold them
> accountable.

Theoretically yes. Civics 101.

You don't seriously think government works that way do you?

> Before you run an end run and do the private financing thing...I
think
> you need to at least try this...if nothing else, to show that it has
> previously failed.

I think it has previously failed.

And I think that MOST other disease advocacy groups spend a tiny
fraction of their resources on this government nonsense. They send the
celebrity rep to get some funding. They might lobby their reps for
money. But they don't rely on it. They know that they'd rather raise
their own money and direct the research themselves. And that when they
do so, that they have leverage to force the research they want from
NIH--because they've already developed what is important on their own.
So they possess a quantuum of evidence and use it to make their point.

What do you have on the cyst stuff? A couple of papers by Oystein and
Sverre-Henning Brorson?

> > "I just don't think that Congressional hearings routinely or
commonly
> > get to the bottom of anything."
>
> This is a growing health concern. These guys probably won't willingly
> pass on an opportunity to play to their constituents.

Maybe. Maybe not. They tend to resond by citing the CDC NIH line that
Lyme is rare, hard to get, easy to cure and nothing to worry about and
affects only a few parts of the country (mostly Blue States as was
recently pointed out by Nadelman and Wormser).

http://groups-beta.google.com/group/sci.med.diseases.lyme/browse_thread/thread/757926ed4ff6337/7cd79a2e8de265bc?q=nadelman+blue+#7cd79a2e8de265bc

Vital Signs: Patterns: The Exit Polls for Lyme Disease

January 25, 2005
By JOHN O'NEIL

A map showing results from the last presidential election
is "remarkably similar" to a map of the distribution of
cases of Lyme disease, a brief article in the current
Lancet medical journal points out.

The 19 "blue states" - those won by Senator John Kerry -
account for 95 percent of the cases of Lyme disease
reported in 2002, they wrote. The disease, caused by
bacteria that are carried by deer ticks, is concentrated in
the Northeast and Midwest.

An accompanying letter, from Dr. Robert B. Nadelman and Dr.
Gary P. Wormser, epidemiologists at the New York Medical
College at Valhalla, also pointed out that many of the
cases reported in "red states" were probably something
else. The illness there is usually preceded by the bite of
the Lone Star tick, which cannot transmit the bacteria that
causes Lyme disease, although it produces a rash that is
identical. The two doctors suggest naming the disorder
Stari, for southern tick-associated rash illness.

Lyme disease is spreading faster than Stari, Dr. Nadelman
said. On the other hand, the last three Democrats elected
to the White House were from states where Stari is
dominant, while three of the four most recent losing
candidates came from Lyme disease states.

Dr. Nadelman concluded, "We do not believe, however, that
tick-borne diseases are likely to be a major factor in the
2008 presidential election."

http://www.nytimes.com/2005/01­/25/health/25patt.html?ex=1107­668841&ei...

3ae78e09cd9

Copyright 2004 The New York Times Company

> Politically speaking, while the actual numbers of Lyme infectees may
be
> relatively small...fear of the illness works for us...anyone and
> everyone is at risk. Public awareness needs to be raised.

Of course I wouldn't think that you'd support those "travel advisories"
posted on LymeNUT?

And that strategy is exactly what Steere Sigal and Eugene Shapiro et al
say is wrong with Lyme groups--that they spread fear and
disinformation.

Even if this strategy was effective, I think you'd tend to get a
congressional hearing version of the GAO report--CDC and NIH are doing
a great job on this! And maybe if you raised enough concern, we'd get
some more research money for NIH and more money for CDC to spread their
version of "education" about Lyme.

Would that be a good result?

> Look...currently there is NO effective control...there is no way
right
> now that anyone should expect the yearly rise in numbers will not
> continue to grow.

Probably right.

> I have long suspected that PART of what motivates the "Steere Camp"'s
> conservatism...the need to downplay the illness...is a realization of
> what a true epidemic...and all the ivs...could do to the finanaces of
> the healthcare system. Potential disaster.

I doubt that. I think EIS has a "cultural" bias towards downplaying
anything common to avoid spreading fear and panic which they have been
trained to believe is worse than any disease outbreak. Thus they
respond in force as "disease detectives" to exotic outbreaks but tend
to downplay things of potentially greater significance--partially
because they are confident that any real pandemic is best dealt with in
the midst of calm rather than panic and that they can deal with it if
the need arises.

I don't think that any of them are thinking about health care financing
issues or the cost of IVs to insurance companies. Nor do I think that
long term IV is thought of as a big issue anymore and Lyme "advocates"
make a mistake in beating that drum.

Here's why. Thirty years ago the oral antibiotics available did NOT
tend to have good CNS penetration or long half lives, properties
important to treating CNS Lyme and Lyme generally.

But since then a number of oral agents have emerged which make this
concern about IV delivery less relevant.

And I think it has become clear even to many "llmds" that patients do
well on orals or equally as well as long term IV. Some patients seem to
need the IV as sort of a jump start but actually tend to start showing
more improvement when that is over and when they're continued on orals,
aggressively and sometimes oral combos. Dr Phillips used to treat long
term IV but has backed way off--not due to pressure but because he sees
that patients do just as well or better on orals, and the indications
for IV and length of treatment needed isn't all that long. The long
term orals can be just as expensive in some cases.

But insurance companies tend to pay without a peep for almost endless
oral meds while they balk at the IV.

But Lyme patients keep pushing for the IV. Which raises the red flags
and ultimately doesn't cure people anyway, particularly NOT Rocephin!

And this persevering on the IV thing has led to these legislation
efforts which are about IV but as in the case of the disastrous CT
legislation, actually gave a short course of IV but then effectively
put a ceiling on orals! Dr Jones reports that he started having
problems with insurance refusing to pay for more orals AFTER that bill
but never or very rarely before it!

What a disastrous strategy!

> Let's ask them. What are the projections for the spread of this
> illness?

Well YES amongst the important questions to ask is the lousy
epidemiology of Lyme which is clearly designed by CDC to DELIBERATELY
understate the true incidence of Lyme and in other ways to understate
the spread of the disease.

> > "So put me in the I'M NOT OPTIMISTIC ABOUT CONGRESSIONAL HEARINGS
> > COLUMN"!
>
> Well, anything run by the Pat and the Karen is headed for
> foolishness...but I still say that you NEED to do this. And...the
> beauty of this sort of thing is that the Pat and the Karen won't be
in
> charge.

Well I honestly don't even know if LDF is still in business.

But these folks ALWAYS *** their way into things and take over in
their own bullying fashion--and then take credit and of course accept
no blame. It is the mantra of Lyme "leadership."

So we'll end up with "the pat" and her trusty sidekicks inlcuding
Phyllis and ALL the LymeNUTTERS led by their "leader" rustytincrap

Who do you think will be "in charge" ? And if the answer is the
congresspeople, well that's ALWAYS a mistake. This is our thing not
theirs so it is up to us to give it to them the way we want it on a
silver platter (NOT Colloidal silver) and control them in their efforts
to "help us."

> > "I want to be on record now. I don't think that Lymeland would
handle
> it
> > correctly even if Congress was in its Watergate Hearing days and we
> had
> > a welcoming open panel of represenatives TRULY on our side (rather
> than
> > the bastards who pretend to support Lyme patients but couldn't give
a
> > rat's ass about any of us, including Joe Lieberman, Rick Santorum
> (evil
> > evil ***), Chris Smith, Joe the absolute Pitts and the rest of
em
> > too!
> >
> > I think we'd screw it up big time".
>
> Possibility. Granted. But see, you always have the ability to pull
> back...cancel the hearings if they're not properly "lined up"...your
> ducks, that is...LOL.

I tend to think that this is a ball that once it starts rolling will be
pretty damned hard to control or stop.

And think--if we ever really WERE a "threat" to Steere and Klempner
don't you think that THEY'D take control and make sure that the ball
rolled right over us?

They've done it time and again. CT, Lyme patients push for legislation.
Suddenly they have a chance of getting it. So the Yale guys step in and
make it THEIR legislation. That's one example, there are plenty.

> I am not thinking about more patients' stories...I don't want to hear
> anymore out of Burrascano's big mouth...

Ditto. Echo.

> ...I want Allen Steere, Sigal, Klempner, etc...I want a progress
> report. I want an adversarial "grilling". What are you doing to help
my
> constituents in the face of this growing concern? Do we have an
> epidemic here, doctor? That sort of thing.

"Adverserial" like Condi Rice and Alberto Gonzales and Paul Wolfowitz
and Don Rumsfeld and those folks get?

> > "I also think that a bunch of us armed with our compelling sob
> stories ,
> > accompanied by a few barely credentialled clinicians, will be made
> > laughingstocks by the well credentialled ostensibly earnest and
> > pretending to be sincere doctors from Yale, Harvard, Penn, Robert
> Wood
> > Johnson, SUNY SB, Tufts, NEMC, NYMC Valhalla, Hopkins, Cleveland
> > Clinic, etc etc etc who say that they really do care but we're just
> > wrong. Backed up by CDC, NIH (with all their special I/Cs, the inf
> > disease folks, the vector borne guys etc)".
>
> Yeah, agreed, so don't do that. Duh.

Asssuming it is UP to us.

> I mean, on the face of things, we look silly. Our basic position is
> > that "We're right and the rest of the world IS crazy!"
> > >
> > >
> > "I WISH there were some forum for real debate, interchange, serious
> > discussion in medicine but honestly there really really isn't. And
> > Congress sure isn't it".
> >
> > In my opinion and in my experience at least.
>
> Right. But I assume you know that these guys slurp out of the
> government's slop trough...and we all understand about budgetary
> hearings and how you can be hurt there.

Sure. I don't think it is going to happen. For one thing, do you think
that Lymeland is going to support a cut off of funds to NIH? It might
be the best thing for us but do you think it is going to happen?

And don't you think that at that point Yale and Harvard etc get into
the ball game and come forward and PROVE that we're nuts and that they
are already doing the right thing.

Is YOUR senator going to side with Allen Steere or Joe Burrascano?
Remembering that Joe Burrascano has been disciplined by the state
medical board in NYS for treating Lyme and tickborne disease
improperly.

> Not a lot of importance ever happens in any legislative hearing in
> PUBLIC, in my opinion...but sometimes...what goes on in the process
IS
> important.
> Congressional staffers asking questions of NIH/CDC. Beats the hell
> outta me e-mailing them.
> >
> >>
> > "One more thing, on the cystic stuff. RIght now it is far from a
> > quantuum of evidence. It might or might not be clinically
> significant".
>
> Yes, I know.
>
> > "It is not the only explanation for chronic Lyme by any means. In
the
> > scheme of things in my opinion it is far from the most glaring
lapse
> > though it is an important issue to research".
>
> Yes, I know...and I agree. But I think the failure there is a good
> issue to make an example of...simply because it is so
> well-documented...I think we already know the answer pretty well...it
> is easily understood...

I understand it. I agree with you. But we're fairly enmeshed in this
stuff. Congress isn't. And if you step back and think about it, the
cyst stuff is a pretty obscure topic. See above (way above).

> ...but most importantly...it is CRITICAL to the viabilty of the
current
> 21 days of doxy theory that it is NOT accepted. You just can't
maintain
> the 21 days thing while confessing that 21 days of antibiotics may
> drive the infection into a protective mode...from which it will later
> re-emerge...and still pronounce the patient "cured".

I don't even think that you need to get to this level of obscure
detail. I think that it is easy to demonstrate using their own work
that the IDSA guidelines, the Yale approach, Steere's approach, Sigal's
etc. will necessarily miss a big (enough) percentage of patients
ENSURING that those patients end up with substantial morbity and even
some mortality. That from diagnosis to treatment they are ignoring a
significant number of people:

"EVEN IF IT WERE "RARE" so what? Does that mean that a patient who has
that presentation can NOT be a Lyme patient? What is rare? If it
happens to 5% of people, well that is 5 of 100, 50 of 1000, 500 of
10,000, 5000 of 100,000, 10,000 of 200,000.

And if one accepts that there are now 25000 or so CDC cases, that means
that we'd see 1250 cases a year--if one accepts that the CDC figures
are only 10% of CDC qualified cases, it would be 12,500 cases a year,
if one accepts that CDC undercounts many lyme cases and maybe there are
twice as many (after all surveillance excludes definite cases, is not
for diagnosis, and there is underreporting by a factor of ten according
to the CDC and it might even be 15 or 20 times underreported) and there
is 500,000 cases a year one would see 25,000 cases a year of a RARE
manifestation!

"But many many many patients are NOT diagnosed early or treated early.
Even if it were only 10% that means a LOT of patients are not
succesfully treated:

25,000 CDC qualified cases a year, 10%=2500
250,000 CDC qualified cases using the CDC admission to reporting of
only 10% of qualifiable cases, 10%=25000 a year
500,000 (using a formula calculating CDC qualifiable cases, those the
CDC excludes, misdiagnosis and I think that might be conservative), 10%
=50,000 annually--that is EVERY YEAR!

So that is actually a LOT of people who are getting screwed even using
steere's 90% success rate figure, and I think that is pretty generous
to him and ignores his own higher treatment failures and accepts his
self servingly generous and short term follow up based definition of
"success" in treatment. "

> It's logically inconsistent.

Yes it is. But we need to remember KISS (Keep it simple (for the)
stupid)

s on the treatment of the illness are then discredited to a
> very real degree.
>
> My choice of this issue is meant to aim for the 21 day miracle...at
its
> heart...and it is vulnerable.
>
> Why not show that vulnerability to the world?

I think there are many issues on which this can be done. I don't think
the cyst one is one of the stronger ones POLITICALLY due to the
relative obsurity of it, but we can agree to disagree.

For a moment, back to what OTHER disease advocacy groups do compared to
Lyme groups. If they spend 5-10% of their resources, energy, time,
money etc on this kind of stuff it is a LOT. We spend probably 95% of
our energy time and money on this stuff.

With the other 95% they raise money. They have marches and walks and
runs and dinners and golf outings and auctions and telethons and
matching funds and apply for grants from consolidated giving charities
and foundations etc. And they take that money and spend it on research
that they choose fund and direct and then build upon.

Why do we insist on reinventing the wheel and never notice that with
each reinvention it becomes less and less round and by the way stopped
rolling a long time ago?

Listen der my friend, I think that in the ideal world you are 100,000%
right on the nose.

But I don't think this is the ideal world. And I think that IF this
"solution" were to work it would be wonderful. Maybe it is worth trying
because it really would seem that if it worked it would be a simple
solution that would potentially send us down the right road, at least
to take the first steps, now rather than later. And maybe the issues
and concerns I express are offbase. Who knows? I'd love for this to
happen and prove me wrong. At the very least it would be necessary to
consider the issues I raise, and others, and try to make sure that
things didn't go wrong to the extent that we could.

But I am highly dubious that any of it would go right. And I am pretty
damend sure that it would end up being another "the pat" (or "its pat")
show all the way. "The pat" wouldn't have it any other way. And rather
than see the show go on without her, she's make sure that the theatre
was closed and empty. If she can't control it, she sabotages it.

Oh well college hoops is on and I'm a fan so I'm signing off for now.

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