LDF response to the Washington Post LONG
Lyme Fnd
Over the past 3 years the Lyme Disease Foundation (LDF), its employees,
volunteers, Board of Directors, advisors, supporters, and even parts of
the government that support the LDF have been the victims of a cowardly
stalker who has been massively disseminating disinformation and
intentional falsehoods in a series of attacks intended to destroy the LDF.
Specific targets have been the Journal, Conferences, and scientific
supporters.
Up to now the LDF has taken the position that this was a problem best
handled by the stalker's employer, the NIAID of the NIH. For 3 long and
very trying years we continued to endure a barrage of attacks, lies and
threats in the hope that this could be quietly resolved without destroying
anyone's career or good name.
The stalker decided to eliminate that option when he publicly accused the
Forschners of fraud in the May 22nd Washington Post article. This action
made it clear that the stalker will not stop. So we are finally forced to
take an aggressive approach in both the media and the courts. We now take
this opportunity to set the record straight.
As a summary: There is an ongoing debate as to whether or not the
scientific dialogue on Lyme disease should be one-sided or if multiple
views can be allowed to be expressed.
This is not a debate about unorthodox medicine. It's a debate about
whether or not we know enough about this disease and bacteria to make
rigid statements about the disease - including gate keeping, that would
limit access to medical care and treatment.
Position #1
Some scientists believe that they know enough about Lyme disease, to hold
to the rigid belief that LD is easily diagnosed, treated and cured. Some
proponents of this view feel that they have a moral and ethical obligation
to force their views on others by:
* restricting insurance coverage (diagnosis, treatment);
* bringing colleagues up on medical board and other legal charges for
diagnosing or treating outside of their belief system;
* preventing clinicians from having any input into the direction of
research.
In this process they feel no guilt in damaging the reputations (and lives)
of those who hold opposing opinions. The prime method of attack has been
behind the scenes spreading rumors and false allegations. In the process
both patient and physician's dignity are attacked. Patients are portrayed
as hysterics, wanting to have Lyme disease. Clinicians are portrayed as
greedy over-diagnosers and over-treaters. Anyone who allows these two
groups to have input, is guilty by association and worthy of attacks. At
its worst, some academics have, during medically accredited meetings, even
put pictures of patients up on the screen and made jokes about the
individuals anguish and plight.
Position #2. - This is the LDF's position.
Science doesn't have all the answers, and that until we do, no one should
be intruding into the doctor/patient relationship. Scientific debate
belongs up on the podium, not as "anonymous sources" in media. Answers
will come from the teamwork of four cornerstones - science, business,
government, and the public. Each group deserves its dignity. It is OK to
openly disagree about the issues of science and positions. And, then the
debaters can have dinner together and still be friends. We believe that
this dialogue should not only occur but it should be encouraged. Personal
attacks are not OK.
Patients are more than just people who go to the government to get money
for the academics. Physicians are more than just the provider of pills,
they are the providers of information, observations, and data. Academics
have an obligation to include others, to avoid the Ivory Tower syndrome.
This also means there are no rigid diagnostic nor treatment protocols.
This is why the LDF has never had either diagnosis nor treatment
protocols.
This is not a debate about long-term vs. short-term treatment;' it's a
debate about whether a second viewpoint can even be discussed.
The May 22 article is the Washington Post's second article about the LDF
and it’s stalker ("Lyme Group's Clout Causes Weak Work, Scientists Says")
and once again ignores vital facts brought to the attention of the writer,
before the article was published. This article presents a clearly
one-sided view and perpetuates the totally incorrect assertions made by
the LDF Stalker. In the interest of fair and accurate information I am
providing you with some of the information that the writer knowingly
failed to mention or failed to inquire about before turning fiction into
fact.
First article:
1. Lack of fair and balanced investigation. From evidence we have, Mr.
Weiss worked with the stalker for about one year on the story. In this
time he never contacted the LDF for input - until immediately before the
first article was published. We knew something was up at the Washington
Post, but not the reporters name. We learned about the specific reporter -
Mr. Weiss, in October, from the CDC. Our lawyer called and left Weiss a
message to give the LDF a chance to defend itself. Despite repeated calls
- this never occurred. The message left at the LDF was “call Rick Weiss
right away, he is going to press and if you want to have a say you must
call him within a few hours”. Luckily, Tom was available and could call
him back. Then, Tom got about 20 minutes. Balance? One year for the
stalker and his cronies, 20 minutes for the LDF. Mr Weiss was not
interested in references of scientists or researchers who supported the
LDF.
2. Lack of investigation of the facts. Tom offered Mr. Weiss the chance
to view 100% of the documents at the LDF. This included the full packet
of information (about 600 pages) sent to the LDF by NIH under the freedom
of information. Mr. Weiss declined to review anything. Weiss also stated
that while he couldn't find any specific references where the LDF
advocated years of treatment he felt the message was there if "he read
between the lines".
Also, Tom invited Weiss to the upcoming scientific LDF conference being
held at the National Institutes of Health. Since Weiss was so interested
in the LDF's scientific efforts, we expected he would want to obtain first
hand information, especially in light of the conference being within miles
of his office. He did not. The conference was hailed as a success by the
attendees and NIH alike. Later, Mr. Weiss started in with his having
heard disparaging remarks about the program. Once again, skipping
positive information. Mr. Weiss also skipped attendance at the LDF's
award ceremony, where the LDF received an award from NIH for its
outstanding efforts in education.
3. Inaccurate reporting. Mr. Weiss reports that the CDC blocked an award
by NIH to be given to the LDF at a conference in San Francisco. The CDC
sent a formal letter of denial to the Washington Post on April 29, 1997
stating that the "CDC never made any such protest". The Washington Post
has not published this letter, leaving a false impression in the minds of
readers.
4. Weiss stated that a review of the tax documents shows "tens of
thousands dollars from such companies". Tom Forschner, a CPA, called
Weiss and denied this and offered to show copies of every check the LDF
received to prove the his statement. Tom challenged Weiss to prove his
false accusation. Weiss has shown no interest in checking the facts, and
chooses to leave the reader with the false impression.
5. Mr. Weiss falsely reported the LDF mission statement. He states that
"we do not receive funds from donors which would have a personal interest
in determining our positions (e.g.. pharmaceutial companies, IV teams) ".
This is not true and is an obvious misstatement. He never asked us what
our mission statement was. This is our "Mission Statement:
The Lyme Disease Foundation, Inc. is a non-profit organization dedicated
to improving the understanding of and to stimulating research and medical
progress with respect to Lyme Disease (Borreliosis) and related
disorders*. The Lyme Disease Foundation is dedicated to prevention,
detection, and recovery with the ultimate goal being to make Lyme disease
a non-risk. We do this through Education, Advocacy, and Directing and
Supporting Research.
* including other tick-borne diseases such as relapsing fever, Rocky
Mountain spotted fever, and babesiosis."
As for donations. We accept donations from anyone. However, no one can
make donations contingent upon the LDF taking any specific position.
6. The article quotes Durland Fish as saying "People are afraid of this
group, and I am too". This too appears to be not true. Karen Forschner,
Chair of the Board of Directors LDF sat next to Durland at the Yale
University Lyme Conference on May 21st. They got along just fine. And, at
no time did Durland appear to be afraid. Karen did take the opportunity
to ask Durland if he knew Rick Weiss. Durland said he had never heard the
name, had Karen repeat it twice to make sure he heard it correctly. When
clarified further that Weiss was with the Washington Post, Durland denied
ever talking to the Washington Post.
---------
I could go on. We had been told by Weiss that there would not be a second
article therefore he wouldn't have the opportunity to correct the mistakes
of the first article. Weiss delivered an implied threat that he could run
more material. We decided not to aggravate the reporter. But let's move
to the surprise second article.
Tom invited Mr. Weiss to the LDF to see the information before publishing
his next article. Mr. Weiss made it clear that he felt the stalker had a
very weak argument and that the story would probably die because it was
becoming a "non story". He also indicated that he would never again
publish unattributable or anonymous statements nor unsubstantiated claims.
Then, within 48 hours, Weiss published the new article, having anonymous
and unsubstantiated claims. Weiss also has stated that he has never met
nor knew the stalker before this past year.
The issue of Dr. Alan Barbour and his relationship to the LDF was
considered private by us. We were very surprised that Dr. Barbour chose
to say one thing to us and then another to the Washington Post. We have
no choice but to clarify what has been said and done. And, to note that
Alan has been repeatedly told his statements were not accurate, and that
his repeating knowingly false claims was slander and libel.
1. Weiss's states that Dr. Barbour lends "credibility" to the LDF. While
Alan is a nice man, the peer-reviewed committee already had excellent
scientific credibility before Alan was added.
2. Weiss states that Dr. Barbour resigned from the editorial board because
of the LDF's "willingness to accept anecdotal information and sloppy
science if it fits in with a certain theory about Lyme disease."
This statement is false and Dr. Barbour knows that it is not true. When
the Journal of Spirochetal & Tick-borne Diseases (JSTD) first started Dr.
Barbour was asked to participate, but he refused, because he disagreed
with the rest of the editorial board about the JSTD's policy of doing
blind reviews. Dr. Barbour insisted that if he was going to be on the
review committee he needed to know who the authors were, this way he could
judge the science. The committee did not cave into this pressure.
Dr. Barbour presented at the LDF's 1995 conference in Vancouver. At that
time he stated to Karen that although he had heard that the LDF got a lot
of IV team funding to promote long-term treatment, he realized it was not
true. And, once again, Karen explained that the LDF does not have a
diagnosis or treatment protocol. Alan asked that he be placed on the
LDF's peer-reviewed journal. We once again accommodated his request.
Dr. Barbour wrote to the LDF clearly stating his reason for resigning. I
can not imagine that he would be so unprofessional and dishonest that he
would put one thing in writing and another in an interview with such a
major paper. His resignation letter is ...
"April 15, 1997
Edward M. Bosler, Ph.D.
Managing Editor
Journal of Spirochetal & Tick-borne Diseases
Lyme Disease Foundation
Hartford, CT 06103-2610
Dear Ed,
Regretfully I must terminate my role as an Associate Editor of the
Journal of Spirochetal & Tick-borne Diseases as of this date. I do not
think my past or present input into and impact on the journal warrants
that title, and I do not want to misrepresent myself. My commitments now
and for the foreseeable future make it unlikely that I would be able to
devote sufficient time to the task for me to {be-ed.} comfortable that I
was pulling my weight as an Associate Editor. While I would be glad to
review manuscripts for the journal on an ad hoc basis and as you see fit,
I personally disagree with the policy of having a list of reviewers at the
front of the journal and accordingly request that I not be listed as a
reviewer either.
Sincerely yours,
Alan Barbour
cc: Willy Burgdorfer”
We have tried to work with Dr. Barbour for many years. And, he has turned
to us when he needed influence and money.
3. Dr. Barbour took money from the LDF to fund his research.
4. When Dr. Barbour feared that his NIH grant was going to be reduced
because of budgetary reallocation, Dr. Barbour turned to the LDF
requesting we use our "influence" to keep his money intact. We responded
by making some inquiries, and neither his nor any other Lyme grant was
touched. Dr. Barbour called later to thank us for our help.
5. About a year ago Dr. Barbour became very communicative with the LDF,
this is when his book came out. As some readers know, Dr. Barbour’s
publisher was busy going to support groups and others looking for people
to sell the book. I suspect his book was in process when he went on the
LDF's journal. It is no surprise that he is no longer on the journal now
that the LDF's founder's competing book has been released.
6. Dr. Barbour called Karen for financial help with the CDC's
International Conference held last summer in California. The program was
not turning out as expected - either in attendance or financially. Dr.
Barbour called Karen and asked that we cancel the upcoming LDF conference
(we did not) so our attendees would have to go to this other conference,
and use our contacts with infusion teams and pharmaceuticals to get him
money for the unprofitable CA conference. I said I would ask, but that we
didn't have the ability to get IV money. (I went through that with him
again.)
7. Dr. Barbour recently asked Karen if she would help him find funding for
a "Willy Burgdorfer Research Center" at UC Irvine. She said no, and,
asked if Willy knew about the using of his name for fundraising purposes.
(He didn't).
8. Dr. Barbour was supposed to participate in our most recent conference
at NIH. At first he wanted to be on a committee and to be a speaker.
Then, when he was placed in the medical section, he complained that he was
under "pressure by colleagues to move" to the other (microbiology)
committee. Then, he decided not to speak and gave that task to a
subordinate. Then, he wanted to run a session on how to write a paper for
publication. Then, Alan got an e-mail from a fellow scientist (at the
Harvard School of Public Health) making accusations about the LDF getting
all its money for the upcoming meeting from IV teams and trying to
discourage Barbour from working with the LDF.
Barbour sent a new e-mail to Karen (and blind copied NIH) questioning
where we get our funds and our treatment policy. Karen clarified that we
hadn't even made the first call for funding, so that rumor was untrue.
And, that we don't recommend months to years of treatment. Never have. We
don't recommend either short or long-term treatment. However, his refusal
to accept or investigate the facts, is his responsibility. Then, he said
that this e-mail also stated, and he agreed with, that one of the
researchers presenting at the Public Forum, had falsified data and Karen
should drop this person from ever working with the LDF. Karen stated that
was a serious accusation, and could he prove it? No, no one could. But,
his colleagues felt the rumor alone was reason to drop the speaker and not
attend the conference.
At about the same time the LDF stalker sent a statement out to at least
one conference organizer that for his good and for the stalkers good, the
person should not attend the conference. And, once again the stalker was
to the Washington Post.
Only one person signed up for Barbour's seminar therefore it was canceled
due to lack of interest. He then asked Karen to make room in the program
for him to make a controversial talk (about diagnosis and treatment) that
would upset the patients. Karen turned him down, stating that LDF
conferences aren't the place for presentations designed to antagonize.
And, that it was now too late to find a place for him.
The real problem occurred when Alan was required to complete and submit a
Conflict of Interest Form where he was required to disclose financial
support relating to the program CME's. He never completed this and it
became a non-issue when he backed out.
Suddenly, just before the conference, he called and canceled his
reservations and decided not to attend. If Alan had such bad feelings for
the conference, he would have pulled his colleague from the presentation
schedule. He did not.
9. Dr. Barbour has made unsubstantiated and untrue claims that we get our
money from IV teams and that influences our positions on issues. We have
flatly told him that’s not true and challenged him to either come review
our records or prove it. He has stated that the LDF advocates months to
years of treatment. This is also, totally untrue and Alan should know
better. We believe this issue is a private matter between the doctor and
patient. And, science has proven that some patients continue to be
infected, with no known ideal treatment protocol. As even he knows, there
is no scientific test to prove bactericidal cure. So the issue of curing
everyone is still open for debate.
In addition, Karen recently wrote a book about Lyme Disease (Everything
you Need to Know about Lyme Disease by Wiley & Sons), if she wanted to
advocate extended treatment this would have been an ideal platform, free
from the constraints of the LDF. Read the book and see if you can find any
reference to years of IV treatment for everyone.
As for other comments in the second article:
10. As for the poster mentioned in the article. This was an LDF project
that we offered NIH the opportunity to participate in. NIH didn't have the
funds to make a 4-color wall Diagnostic Poster and we offered to let them
join in the LDF's effort. All of the LDF reviewers were renowned,
published (on LD) physicians and researchers. We offered to show Weiss
the documentation, the fixation of NIAMS to keep signs and symptoms that
were not in their institutes mission off the chart, and that NIH's
inaction cost the LDF money, the loss of two years of effort, and the loss
of the grant. We even printed an LDF vs NIH version to show NIH what a
poor design they had. We still have the poster and offered to review this
with Weiss.
11. As for NIAID and their fear of the LDF. NIH separate from LDF issues,
has a high level of paranoia about outside groups. I can personally
attest to this when a fellow board member and former congressman Berkley
Bedell tried to arrange a meeting with Dr. Tony Fauci (Dir. of NIAID)
regarding a non-LD issue. There were numerous phone calls to us and
others to determine what Berk was up to, and to set policy and answers for
all his questions. They didn't want to wait for the meeting, for fear
they wouldn't have the answers. There was no such thing as a "fresh
start" for Berk. Answers were set before he even had a chance to ask
questions. And, from the FOI, the level of paranoia significantly
increased when the stalker was hired and started disseminating
misinformation about the LDF to other government officials.
12. About LDF "lobbying". NIH taught the LDF how to lobby. NIAMS, every
year, supports a meeting with patients groups. Then, they present why
NIAMS needs more money than the President has in his proposed budget. This
NIAMS-related group then sets-up meetings "on-the-hill" with congressional
representatives to lobby for more money for NIAMS. Karen attended one
such meeting. She was instructed why NIAMS needed more money than NIAID,
then was told how to pull out the most handicapped picture of her poor
pitiful son, and show this to the Senators and Representatives in an
attempt to play on their sympathy. She was told the more pathetic the
picture the more money. And, this would allow NIAMS to do more good work.
But, NIAMS also told Karen not to worry about whether or not NIAMS spent
the money on Lyme disease. That she wasn't to worry about those details.
Can you imagine the humiliation of a mom asking for money for a million
dollar institution based on what she felt was a pretty picture of her
baby. And the hurt that occurs when the congressman grimaces when he look
at the picture and sees a multi-handicapped baby, drooling, as he sits
slumped over in a wheel chair?
While we are still listed on the NIAMS committee and still receive
mailings, the only money we work for is for tick-spread diseases.
13. Neither the Forschner's or the LDF have ever asked for the removal or
punishment of the person in question. What the government does with
someone who is committing these crimes is their responsibility. But, the
fixation and stalking must stop.
14. The Forschner's were accused by the Stalker, in this Post article, of
committing "fraud" on NIH and the public. What fraud? Where? This is
totally and completely false. This is an outrageous accusation and Weiss
made no attempt to substantiate this legally actionable statement in his
article. Clearly we cannot let this statement go unchallenged.
15. To date the crimes and civil wrongdoing committed by the stalker have
been glossed over by Weiss. The extent of fixation on the Forschner's and
the LDF went so far as to keeping a *** Scoring System **** giving
himself a point every time he was able to damage an initiative by the LDF.
This speaks volumes to his intentions. One of his main goals has been to
harm the LDF's CDC grant. He did many of his illegal activities
knowingly, having a title as an NIH grant project officer, and outside the
scope of his job. Intentionally letting media and grantees falsely think
he was acting with NIH approval and insider knowledge.
The implications of a clique, led by a federal employee, that has the
intent to destroy a private organization (and anyone affiliated with it)
by using government grantees, government computers and resources,
misrepresenting information and massive dissemination of such documents
are enormous.
Such activity is within no one's legal rights!!!!
LDF Confidential CDC Grant information has been taken from files and
illegally transferred outside of the government. Other grantees have been
tracked for their relationship to the LDF. Even NIAID's own government
computer has been broken into and information has been stolen and then
transferred to outsiders (media and LD advocate). Support groups and
others have been used. This individual has even used his official
government position to lobby against the LDF.
16. The Post has even chosen to skip over including in their report the
ramifications of a violation of the fundamental Bill of Rights freedom
from government intrusion into a 4-person nonprofit organization. The
stalker (who is not an expert in LD) has led a behind the scenes reign of
terror in the Lyme disease community since 1994, because he, and some
colleagues, don't believe that other opinions (which are supported in the
peer-reviewed literature and are not "unorthodox") should even be given
the right to be heard. This is a McCarthy-era style name calling that
must end.
This article ignores a 3-year repeated assault on our reputation and
financial stability, because of we believe that until there is a better
scientific understanding of LD, more than one voice should be heard. And,
this article portrays the leader and main perpetrator as the poor pitiful
victim. Now, this poor lone "I am but one person" perpetrator might get
a 2-week suspension because of his continued illegal behavior. Illegal
activity is not an acceptable part of government activity.
In conclusion, the information from the Washington Post article is not
fair or balanced reporting. It is not designed to provide you with the
true extent of the government's intentional overreach and serious
manipulation of information. We will have more as the weeks go on.
Karen & Tom Forschner
DenimN
This sounds just awful, but while reading the Forschner's reply to the
Post's article, I sat here wishing that Weiss and the suspended NIH govt.
employee would get a horrible, painful, chronic, persistent case of LD! .
What would their opinions be when they couldn't seem to get well? Or if
they couldn't find a doctor who was willing to properly diagnose and treat
them?
I wouldn't wish this on an innocent family member, but that thought
occured to me too...I wonder what they'd do or who they'd turn to for help
if a loved one came down with Lyme?
I'd like to dump them off in Oklahoma where I got totally covered with
ticks (with no tweezers), lock them up somewhere where they had no access
to medical care for about 6 months, let them get so sick they WISH they'd
die to relieve the pain and agony, then see how they feel about LD. I
wonder who they'd turn to for help then? Lenny Sigal? Alan Steere? or
maybe Robert Schoen? LOL They'd die for sure after being told that they
don't have LD and refused proper treatment.
Man, what is this world coming to? God, forgive me for even thinking of
wishing this on another human being, but that may be what it takes to
change some attitudes.
Denim
Rita Stanley
DenimN <den...@aol.com> wrote in article
<19970524100...@ladder01.news.aol.com>...
> What would their opinions be when they couldn't seem to get well? Or if
> they couldn't find a doctor who was willing to properly diagnose and
treat
> them?
They would probably suck down antibitoics without anyone knowing it. What
is that NJ governor doing - she's in the closet.
>
> I wouldn't wish this on an innocent family member, but that thought
> occured to me too...I wonder what they'd do or who they'd turn to for
help
> if a loved one came down with Lyme?
They turn to the support people. I know that for a fact.
>
> Man, what is this world coming to?
This world is not coming to anything - it is still the same. Only now
communications are faster, and these things are more exposed and THAT is
the good news. If, at least, we are not in the dark on what is happening,
we have a fighting chance.
Rita
Rita
Cpuppergo
denim wrote:.....This sounds just awful, but while reading the Forschner's
reply to the Post's article, I sat here wishing that Weiss and the
suspended NIH govt.
employee would get a horrible, painful, chronic, persistent case of LD! .
wish it?....i pray it! .....and guess i've got a streak bigger than yours
cause i don't even apologize or feel bad about it. cindy
Geri Fosseen
I have a really stupid question...I just dug through DejaNews to read the
LDF's Response (my news server sucks) and while it was fantastically
wonderful to read, I have one question -- where is it going? Is it being
sent to the Post? Published elsewhere? Or is it for the patient
communities clarification? I'm sorry if this has already been discussed,
but I get responses to original articles days before the originals in this
stupid newsreader.
Again, kudos to the LDF for clearly stating their positions and for helping
us all to understand -- while I never lost faith in the LDF, I was looking
forward to hearing what they had to say and I'm highly impressed. I have
the utmost respect for the Forshners and thank them for the effort that
went into this response.
Take Care,
Geri
Writer0608
Good question about where this will go. Our lawyers are contacting the
Post to request a retraction and to question the lack of objectivity of
the article. WE only included about half of the comments we have about
the article and its bias.
We will aso post a list of the proved offenses and people that the stalker
has accused of wrongdoings along the way. Including his post about having
readers turn in Natole to the medical board, the assuring that the
government make grantees issue uniform treatment protocols, and the
illegal use of grantees (that reported to him) to go to support groups and
turn them against the LDF (this was with NJ support groups) in an effort
to divide and conquer. Also, he had others writing for doctor referrals
(e,g, in NJ, NY, etc.), and them included those names in pages of
accusations he mailed out to hundreds of media, NIH grantees, government
officials, and insurance companies.
Yup, while the LDF was holding a friendly meeting with the Blues in Ct and
the CT ins. Dept., the stalker sent one of his misinformation documents to
the Blues - next thing we know the meeting is sabotaged. And, it turns
into a presentation by the Blues consultant Schoen. Schoen presented on
what Steere did years before. We sat speechless.. And, asked why the time
was eaten up by Schoen and not used for dialogue, and we would liked to
have presented another scenario than LD was discovered in Lyme Ct and
easily diagnosed & treated. Then the meeting was over. The ins. dept and
Blues said to me - "You are not as radical as I thought."
There is much more to disclose. And, it's on its way.
Karen Forschner
RACEr91
In article <19970524052...@ladder01.news.aol.com>,
lym...@aol.com (Lyme Fnd) writes:
>I could go on. We had been told by Weiss that there would not be a second
>article therefore he wouldn't have the opportunity to correct the
mistakes
>of the first article.
I had a discussion with Rick Weiss via telephone immediately after he
published his first article. The conversation was friendly and primarily
intended to find out whether he would be doing a followup article and
where people should send their comments. He gave me his e-mail address but
made me promise not to make it public as he didn't want to be flooded with
e-mail from patients. He already knew what patients would say and didn't
care to hear it. He also told me it wouldn't matter anyway because he
didn't plan to revisit the topic again.
The thought had originally crossed my mind that I might send him
information that would help him in a followup article, but I saw no reason
to bother. After reading Weiss' latest distortion and the Forschner's
excellent response, I suspect it would have been a waste of my time to
send him anything. We can only hope that the next reporter to investigate
Lyme disease issues will do so in an honest and unbiased manner.
As for the Washington Post, I no longer consider it a credible newspaper.
Steve
Debbie Parrett
Lyme Fnd wrote:
>
> 12. About LDF "lobbying". NIH taught the LDF how to lobby. NIAMS, every
> year, supports a meeting with patients groups. Then, they present why
> NIAMS needs more money than the President has in his proposed budget. This
> NIAMS-related group then sets-up meetings "on-the-hill" with congressional
> representatives to lobby for more money for NIAMS. Karen attended one
> such meeting. She was instructed why NIAMS needed more money than >NIAID,
Karen, this revelation along with reading about the politics of
rheumatology in "The Arthritis Breakthrough" has really incensed me. I
sat down yesterday and finished the entire book and it opened my eyes to
the realities of economic exploitation in this field. Dr. Thomas
McPherson Brown, a rheumatologist, poineered the infectious theory
behind rheumatoid arthritis and was shunned by the Establishment. His
suspicions were that most, if not all, connective tissue disorders were
infectious in origin.
Gee, that means if these patients could be put into remission by
antibiotics, then who would be left for the rheumatologists to practice
their witchcraft on? Would there be any justification for NIAMS to
exist? Does it make sense for the Yale Lyme Clinic be run by
rheumatologists rather than infectious disease doctors?
I highly recommend this book, not only to understand Dr. Brown's
techniques in treating rheumatic conditions triggered by Borrelia
burgdorferi and its other infectious cousins, but to understand what
rheumatology stands to lose by the lack of repeat business from patients
who recover from rheumatic illnesses or even "Post Lyme Syndrome". The
only downside to the book is the chapter on Lyme disease. When Dr.
Brown originally wrote this book in the mid-eighties, I don't think he
realized that Allen Steere had already been bought outright by the
Establishment. It's a shame he didn't live to see the lack of respect
Steere has earned from patients.
Debbie
Marie
It's time for the LDF to kick ass. Rita Borgeson
SuFein
In article <01bc6a02$3885c160$LocalHost@pbcustomer>, "Marie"
<rita.b...@snet.net> writes:
>
>It's time for the LDF to kick ass. Rita Borgeson
>
>
I think it's time for them to take it to court. No one looks good after a
pissing match.
Susan
Rita Stanley
SuFein <suf...@aol.com> wrote in article
<19970527133...@ladder02.news.aol.com>...
And they need the support of all of us. They cannot do it alone.
Rita Stanley
MHHirsch
In article <33888A...@erinet.com>, Debbie Parrett <par...@erinet.com>
writes:
> Does it make sense for the Yale Lyme Clinic be run by
>rheumatologists rather than infectious disease doctors?
This is the crux of the matter. This statement needs repeating to every
one at the NIH, Yale, the Government, every infectious disease department
in every hospital, every medical conference, every medical school and
every doctor's office.
It is a question I have repeatedly asked. Where is the proprietary
interest of the infectious disease community that they would allow another
specialty to take over their field like this?
It is the only question that can expose the emperor's new clothes.
Ann
BCLyme
In article <19970531153...@ladder02.news.aol.com>,
mhhi...@aol.com (MHHirsch) writes:
>> Does it make sense for the Yale Lyme Clinic be run by
>>rheumatologists rather than infectious disease doctors?
>
>This is the crux of the matter. This statement needs repeating to every
>one at the NIH, Yale, the Government, every infectious disease department
>in every hospital, every medical conference, every medical school and
>every doctor's office.
>
> It is a question I have repeatedly asked. Where is the proprietary
>interest of the infectious disease community that they would allow
another
>specialty to take over their field like this?
I don't believe that the rheumatologists took LD over but rather, they
never let it go.
Brian
DenimN
In Dallas, it was originally a Rheumatologist who recognized LD in that
area of the country. They all aren't bad - just the uneducated ones.
Denim
Debbie Parrett
>
> > Does it make sense for the Yale Lyme Clinic be run by
> >rheumatologists rather than infectious disease doctors?
>
> This is the crux of the matter. This statement needs repeating to every
> one at the NIH, Yale, the Government, every infectious disease department
> in every hospital, every medical conference, every medical school and
> every doctor's office.
>
> It is a question I have repeatedly asked. Where is the proprietary
> interest of the infectious disease community that they would allow another
> specialty to take over their field like this?
> Ann
Ann, this is a good message to send over to the Infectious Disease folks
at Cleveland Clinic in response to publishing that rheumatology trash
last month. To reword the last sentence of that article, "We must
identify and debunk pseudo-rheumatology whenever we find it."
Debbie
MrsMeister
I too have laughed repeatedly at the irony of here we have this epidemic
infectious disease right in front of their eyes, and these infectious
disease doctors seem hell bent on denying that it is a problem....
I came up with the perfect gift for all the doctors unwilling to redefine
this disease.. an egg scraper! They'll be needing one soon !
Debbie Parrett
DenimN wrote:
>
> In Dallas, it was originally a Rheumatologist who recognized LD in that
> area of the country. They all aren't bad - just the uneducated ones.
>
I'll bet that rheumatologist recognized LD because of rheumatic
symptoms, i.e. joint complaints. If a patient's only manifestation was
neurological, could this doctor have found it?
I'll use myself as an example. Nine years ago when I was originally
diagnosed and treated, my internist sent me to Yale Clinic and I was
evaluted by the head rheumie at that time (not Steere). By the time I
got there I had six weeks of doxy and was feeling much better and the
joint problems had resolved. I was grateful for feeling better and this
doctor examined my skin and joints and asked a few questions. In my
report he wrote "We would recommend no further therapy at this time and
would like to have her contact us if she has any recurrence of joint
complaints."
Well, I had no joint complaints until four years later. But he failed
to ask me questions that would have uncovered the mild neuropathies I
was experiencing, as well as the headaches and the eye inflammation that
continued as well. A certain infectious disease doctor commented at the
D.C. conference last month about patients feeling they are cured until
he questions them extensively on other possible symptoms they may be
experiencing, albeit subtle ones.
Rheumatologists are not bad people. They just cannot or will not look
at the big picture and have no business dispensing advice on LD for
internists and other specialists to follow. If Infectious Disease
doctors weren't so consumed with AIDS, they probably would not be as
tolerant of rheumatology "experts" and would have become more involved
with Lyme long ago.
Debbie
Cpuppergo
In article <19970601223...@ladder02.news.aol.com>,
mrsme...@aol.com (MrsMeister) writes:
>
>I too have laughed repeatedly at the irony of here we have this epidemic
>infectious disease right in front of their eyes, and these infectious
>disease doctors seem hell bent on denying that it is a problem....
My dad told me this the other day: A good family friend of ours was the
director of Arkansas BC/BS for about 20 years. When I first got sick (i
mean when we found out it was Lyme not the other crap), dad was, as I,
just shocked over the absurdity of what we were finding out was going on.
The "we don't have lyme *here*!" stuff. Dr. Bob told my dad not to worry
that it'll all come around. He said in the 1960's that there was a huge
deal and even all this research going on over whether or not brown recluse
spiders were in Arkansas. The whole thing was just absurd he said, cause
absolutely *everybody* has 'em. Finally, after a little over 2 years of
research on this had passed (and no tellin' how much $!), a doctor who
knew better and had just gotten fed up with it went into their lab at the
Medical School. He knew their "habits", while the researchers didn't know
diddly. He moved a large peice of furniture where behind it of course
it'd be really dark and where they hide. He caught about 10 or so
scurrying away. He showed them and asked now just what is this? Needless
to say, the research was immediately terminated. cindy
jha...@bell-labs.com
In article <19970602032...@ladder02.news.aol.com>,
This is absolutely hilarious! Cindy, you just made my day!
Marie
-------------------==== Posted via Deja News ====-----------------------
http://www.dejanews.com/ Search, Read, Post to Usenet
RMAgricola
Why should Lyme disease be a specialty ? Look at the
internists,pediatricians and
family practice providers who are seeing the majority of Lyme patients and
doing a
good job. Where would we be with out them ?
If there is a specialty that should get more involved with Lyme disease it
is neurology. After all this is a brain disease as a well as a joint
disease.Just ask/listen to the patients.
Martha A.
DenimN
<<<<<I'll bet that rheumatologist recognized LD because of rheumatic
symptoms, i.e. joint complaints. If a patient's only manifestation was
neurological, could this doctor have found it?>>>>>
Any good MD, no matter what his/her specialty is, should inquire about
other symptoms in addition to those which fall within hsi/her expertise.
Any good MD should refer patients elsewhere for additional help if
necessary or at least consult with another specialist if other symptoms
are a problem for his patients.
I believe this Rheumy would have recognized neuro problems as LD - his
office partner was a Neurologist! They worked together to assist LD
people.
Denim
DenimN
<<<<<If there is a specialty that should get more involved with Lyme
disease it
is neurology. After all this is a brain disease as a well as a joint
disease.Just ask/listen to the patients.
Martha A.>>>>>
Martha,
You are so right...I've spent over a year "educating" my new neuro about
LD. thank God he was receptive. He has even called me to ask me
questions while trying to diagnose other patients. During the past year,
he has diagnosed LD in several patients and has thanked me for all the
information, videos, etc., that I have provided - those things have helped
him diagnose and treat others properly.
If a physician is open to it (and I think any good MD would be), they are
very grateful for information to hlep them do their job.
Denim
jha...@bell-labs.com
In article <19970604123...@ladder02.news.aol.com>,
rmagr...@aol.com (RMAgricola) wrote:
>
> Why should Lyme disease be a specialty ? Look at the
> internists,pediatricians and
> family practice providers who are seeing the majority of Lyme patients and
> doing a
> good job. Where would we be with out them ?
>
> is neurology. After all this is a brain disease as a well as a joint
> disease.Just ask/listen to the patients.
> Martha A.
I agree. Outside of the eye disease, which because of optic nerve/retina
damage has left me in danger of going blind, other neuro problems have
been most prominent. Joint disease definitely there, just nothing a
rheumatologist can drain!
Unfortunately, in my case, of all the specialties I saw prior to seeing a
LLMD the neurologist was the least receptive to my plight. While
ackowledging one neurological deficit, he refused to consider others, and
when asked for a list of potential diagnoses that would cover both the
optic nerve and the trigeminal/ facial nerve problems he refused to say a
word. His actions and words told me that he thought I was mentally
unstable to be worrying about such minor problems. But then again, he
may have felt threatened by the fact that I called him on his assessment
after I indicated to him that I also have professional experience in
neurological assessment.
Marie H.
RMAgricola
We have to find neurologists who are interested in Lyme disease and are
willing to fight the system . Is there anyone out there that is up to the
challenge ? We would love to hear from you.
Martha A.
Marlynch
In article <19970605144...@ladder02.news.aol.com>,
rmagr...@aol.com (RMAgricola) writes:
Long Island is one of the top endemic areas in the country, at least the
east end.
I had substantial trouble finding a literate clinical neurologist, and in
fact did not succeed.
I totally agree that we need neurologists. I'll take this further - we
need neurologists to research, treat, and DEFINE the neurological aspects
of the disease. It does seem as though neuro-psyche is starting to take a
more visible role. They seem to be in the best position to do so at the
moment. Other specialties need to re-visit this disease and take a fresh
and objective look at it, unhindered by, well, unhindered <g>.
Mary