Re: Lyme Patients- Protect Your Treatment Options Now

April 25, 2007

The links you provided were dated 1991. What makes you think it is an

issue today? Seems it's been " out there " for a long time already.

Be well,

Connie

>

> Hey everyone. I'm new here (definitely not with Lyme though...), and

> because of this and because of what I'm about to bring up (it's juicy

> and controversial), I know everyone is going to think I'm a mole or a

> bad guy (girl).

April 25, 2007

Having closely monitored the action-reaction behavior of the opponents of Lyme

disease, I believe there is a high probability that they will take any

opportunity to discredit Dr. Stricker, or ILADS, if they show up on the

opponents home soil. Experience has given me every reason to believe that

articles appearing against Dr. Stricker or ILADS will likely be written by

persons with a conflict of interest and contain details and references which may

be out of context, exaggerated, or frankly untrue. The point is not to give the

other side any reason whatsoever to play unfair as they often do. I'm sorry for

not being clear about this in my original post.

-georgialymegal

aynrandi <aynrandi@...> wrote: The links

you provided were dated 1991. What makes you think it is an

issue today? Seems it's been " out there " for a long time already.

Be well,

Connie

>

> Hey everyone. I'm new here (definitely not with Lyme though...), and

> because of this and because of what I'm about to bring up (it's juicy

> and controversial), I know everyone is going to think I'm a mole or a

> bad guy (girl).

April 26, 2007

MILLION DOLLAR QUESTION: Where is the STRATEGIC PLAN from ILADS?? When

they get caught up in Media Ping-Pong NOTHING gets accomplished....they need a

STRATEGIC PLAN....<sigh>

Angel Huggzz

or Angel

www.lymecommunity.com

April 27, 2007

GeorgiaLymeGal,

This sounds like a veiled threat.

You are correct to assume many will think you are a mole because you readily

admit YOU ARE NOT ONE OF US.

I would reccommned no one move on this until we get more information. This could

be nothing more than a veiled threat to get us to turn on one of own. We are

NOT puppets on a string.

Dawn Irons,

Editor, Public Health Alert

www.publichealthalert.org

April 27, 2007

In a message dated 4/27/2007 12:43:10 P.M. Mountain Daylight Time,

Cslyme@... writes:

Yes they do..........Yes they

Connie, MI

**********Yes they do what? I have asked the private LLMD group which is

made up of most of ILADS and I was told they do not have a Strategic Plan? I

was told they are hiring a PR firm? A PR firm does NOT write a Strategic

Plan....What is your definition of a Strategic Plan? Strategic Planning is not

media ping-pong.

April 27, 2007

Yes they do..................

Connie, MI

: [ ] Lyme Patients- Protect Your Treatment Options Now

> MILLION DOLLAR QUESTION: Where is the STRATEGIC PLAN from ILADS?? When

> they get caught up in Media Ping-Pong NOTHING gets accomplished....they

> need a

> STRATEGIC PLAN....<sigh>

>

> Angel Huggzz

> or Angel

> www.lymecommunity.com

>

> The book, Confronting Lyme Disease: What Patient Stories Teach Us, is now

> available through Amazon and Booksurge Bookstores. Please visit the

> official website at http://www.confrontinglyme.com for more information.

>

April 27, 2007

" He said the university " misinterpreted what happened, " and said he

is victim of an " agenda " at the university. " They have other cases

where they covered up misconduct, and this (firing) is an attempt to

show they can prosecute. " He said he is considering suing the

university. "

It appears that this doctor is not defending his actions, only

justifying what he did because there were other cases that were

covered up, too.

That's the way I read it.

I'm not getting what you mean by the ilads discredited and losing the

ilads guidelines. Can you explain that to me again?

Lily Jamison

>

> Hey everyone. I'm new here (definitely not with Lyme though...), and

> because of this and because of what I'm about to bring up (it's

juicy

> and controversial), I know everyone is going to think I'm a mole or

a

> bad guy (girl). If I showed you the bruises on my back side from my

> penicillin shots then you'd know I'm on your side. Guys, don't hold

> your breath waiting for photos : )

>

> Quick Background:

>

> Ideally, medical treatment guidelines protect both doctors and

> patients. They act as a " peer reviewed " approach to diagnosing and

> treating medical problems. By following them, doctors and patients

can

> feel comfortable knowing that other doctors are in agreement with

how

> the patient's particular disease or ailment should be treated.

> Treatment guidelines are very powerful in this way.

>

> Unfortunately, corrupt doctors and business people in the medical

> community have figured how to exploit this power to fatten their

bank

> accounts. They publish phony and unscientific treatment guidelines

> which serve their goals, make them wealthier- but often wind up

> harming patients.

>

> ILADS (International Lyme and Associated Diseases Society) is made

of

> many of the top experts in Lyme disease diagnosis and treatment in

the

> world. ILADS treatment guidelines recognize Chronic Lyme Disease and

> recommend appropriate treatment for it, helping all of us and

> `patients to come', to get well again; to move on with our lives.

> ILADS guidelines were accepted and published by the National

> Guidelines Clearinghouse, as part of the U.S. Department of Health

and

> Human Services. That's holds a lot of weight, and is credit to the

> doctors who formed the guidelines.

>

> IDSA (Infectious Disease Society of America) is made up of

infectious

> disease specialists. The IDSA treatment guidelines for Lyme disease

> say effectively that Lyme patients are all nuts and should be locked

> up for hypochondria, or something like that. They are so ridiculous

> and in conflict with the bulk of medical science and study of Lyme

> disease, that the Attorney General of Connecticut is investigating

the

> IDSA for possible criminal intent.

>

> Currently, many doctors are using the ILADS guidelines to diagnose

and

> treat Lyme patients. Many of you who are reading this have probably

> benefited at one point of other from these guidelines. But, as I

write

> this, the IDSA is also pushing hard to get doctors to adopt their

> potentially criminal guidelines.

>

> The Quiet Before the Storm:

>

> Things seem pretty secure right now as far as the ILADS guidelines

are

> concerned. But, what would happen if the ILADS guidelines were

> suddenly dropped by the National Guidelines Clearinghouse?

>

> The only option left for doctors would be the seemingly evil IDSA

> guidelines. Using these guidelines, MANY people will wind up

horribly

> sick, dead, or committing suicide, if not just losing years of their

> life to Lyme disease, or suffering the permanent damage to their

> bodies from it. Without ILADS guidelines, we will lose our treatment

> options and doctors will lose their protection to be able to treat

us.

>

> Speak No Evil:

>

> There is a little secret that no one in the Lyme community seems to

> want to talk about. I am guilty of helping to keep this secret. Now,

> after encouragement and private discussions with other's in the Lyme

> patient community, I think the silence needs to be broken.

>

> The CURRENT president of ILADS is Dr. Raphael Stricker. In October,

> Dr. Stricker's term as president will end, and he will be replaced

by

> Dr. H.

>

> I don't know Dr. Stricker personally, but believe that he is doing

an

> excellent job at ILADS on behalf of all of us who suffer from Lyme.

I

> thank him for this. The problem however isn't what he's doing right

> now, it's what he MAY HAVE DONE IN THE PAST. And what would happen

to

> the credibility of ILADS if a story comes out in the media about

his past.

>

> For those of you who don't know about this, you need to. We all NEED

> to know, because after all, he represents ILADS, which represents

all

> of us, and our needs as patients.

>

> Read these links below:

>

> http://grants.nih.gov/grants/guide/notice-files/not93-177.html

> scroll to the end to the last 2 paragraphs

>

> http://www.aegis.com/news/sc/1991/SC911114.html

>

> In October, ILADS is presenting in Boston, Massachusetts- home to

the

> same doctors who's conflicts of interest in Lyme disease date back

> before the first insurance claim denial for Lyme disease was ever

> issued- The " bad " guys. The ones with enough money and power behind

> them and their PR machine to convince the rest of the country, our

> friends and our very own families, that we just might be

> hypochondriacs, nuts, malingerers, or even " stalkers " trying to harm

> our doctors. Sound familiar?

>

> What happens if someone, hmmm, I can't think from where, anonymously

> calls up the Boston Globe and tells them about how ILADS is coming

to

> town- That there is a " big controversy over Lyme treatment " . We know

> the media LOVES controversy. The caller remarks that " Harvard

medical

> school " hold one opinion, and that the esteemed IDSA and even the

CDC

> support it, but that a " smaller " group of doctors, known for

> " over-prescribing " antibiotics to " antibiotic addicted patients " ,

> holds a " radical " and different viewpoint. And, those poor,

> Rocephin-addicted, victims of Lyme disease, their blinding

> hypochondria, refuse to see that their own savior, Dr. Raphael

> Stricker, might actually be a wolf in sheep's clothing- Someone who

is

> profiting from their suffering.

>

> To those of you who think this sounds strong, you probably haven't

had

> this disease very long, or seen the politics, money, and power that

> push us Lyme patients around yet. Hang in there, you'll soon

> understand once you become collateral damage of a war of fear,

greed,

> money and politics, like the rest of us. We're not in Kansas

anymore.

> The stakes for Lyme disease are huge, and a very effective PR

machine

> is trying to squash us patients and shut us up. Remember the PR

piece

> " Stalking St**re " in the New York Times?

>

> Imagine the cover of the Boston Globe before ILADS shows up in Bean

town-

>

> " Lyme Doc's Dirty Past "

> " Lyme, Scandals, and Even More Controversy? "

> " Leading Authority on Lyme Discredited "

> " Patients Led Astray Again "

>

> The consequences of controversy in the media could be DEVASTATING

for

> Dr. Stricker. And, what happens to Ray Stricker, happens to ILADS.

>

> What happens to ILADS, HAPPENS TO US.

>

> If ILADS falls, we fall. And more people will continue to fall,

with

> each and every new, infective tick bite.

>

> Think of the consequences of media event in Boston about Dr.

> Stricker's past:

>

> 1) No Lyme-curious, Boston doctor in his right mind will attend the

> ILADS function for fear of being associated with the negative

> publicity. Massachusetts doctors will be disinclined to use ILADS

> guidelines in diagnosing and treating their patients.

>

> 2) ILADS would be discredited, and the National Clearing House could

> actually drop the ILADS guidelines. This would leave only IDSA's

> guidelines left for doctors to follow.

>

> 3) ILADS could lose serious momentum and it's members start dropping

> out for fear of becoming personally discredited by association to

> ILADS, or out of fear of being peripheral targets of the PR machine

> that is trying to shut Lyme doctors down and shut us up as patients.

>

> Think I'm nuts? Did you ever think that Dr. would be the

target

> of a witch hunt? That Dr. Burrescano would close his practice? That

> Dr. Steere would become the director of Rheumatology training

program

> at Harvard Medical School?

>

> I don't know either way about Dr. Stricker's past, and I don't

care. I

> see what he does now and what he's doing for all of us, and it's

> tremendous. I've heard that Dr. Stricker has been approached before

> about his history but wouldn't make any statement about it. We may

> never know if he did any wrong. But, in the face of his upcoming

> change in position at ILADS, this upcoming function in Boston, and

his

> media-juicy, controversial background-

>

> what I also see is WHAT DR. STRICKER IS NOT DOING. He could easily

> step down quietly from his position as president of ILADS, just a

> couple of months ahead of schedule to do so anyway, and let Dr. H

> assume the new position. Dr. Stricker could act, and

>

> AVERT A POSSIBLE DISASTER.

>

> But he doesn't seem to want to act. But we can. Remember, what

happens

> to Dr. Stricker, happens to ILADS, and happens to us.

>

> We really need to encourage him, respectfully, and kindly with

> appreciation for all he has done as acting president at ILADS, to

>

> STEP DOWN BEFORE THE BOSTON EVENT SCHEDULE GOES OUT

>

> It's possible that Dr. Stricker's situation is more complicated than

> it seems, but even if that were that case, just the appearance of

any

> possible wrong-doing in the media could be enough to discredit ILADS

> and cause irreversible damage to their image, their authority, and

the

> power of their guidelines.

>

> Let's help disarm and prevent an ambush of the anti-Lyme PR machine

> and becoming collateral damage of a careless media story. We need to

> encourage Dr. Sticker, for himself, for ILADS, and for all of us to

do

> the most sensible thing-

>

> ILADS should simply expedite the transfer of position of president

> ahead of schedule.

>

> MEMBERS TO CONTACT AT ILADS:

>

> It's vital that we are respectful of any of these people who we

> contact. Please do not email them anonymously, and of course, be

> polite in your suggestions and how you express your concerns.

>

> Barbara Buchman

> Executive director of ILADS

> 301-263-1080

> lymedocs@...

>

> Mitch Hoggard at ILADS

> mitch@...

>

> Dr. Dan Cameron at ILADS

> lymeproject@...

>

> Horowitz, MD

> kalachakra108@...

>

> I'm going to put this same message up at different places where

other

> lymies get together on the internet. If the moderator decides to

take

> it down, that scares me. A high and mighty Lyme guru in the

community

> once told me there was dirt on both sides of the fence- and to be

> careful. We all need to be, and to protect ourselves and ESPECIALLY

> those groups that are helping to protect us !

>

> - Georgialymegal

>

April 27, 2007

Wasn;t this incident disclosed in that article in forbes magazine?

That would mean that the opponents that you are talking about have

already brought this to public attention.

Did ilads and lyme patients know about this when dr. stricker became

president of ilads?

I know dr. stricker is a really good lyme doc. He's here in

california. But if his violation was based on data selection, isn't

that the same accusation being made against the idsa guidelines.

Biased data selection?

Lily jamison

The

links you provided were dated 1991. What makes you think it is an

> issue today? Seems it's been " out there " for a long time already.

>

> Be well,

>

> Connie

>

April 27, 2007

What kind of strategic plan do you mean? for ilads or for patients?

Lily Jamison

>

> MILLION DOLLAR QUESTION: Where is the STRATEGIC PLAN from ILADS??

When

> they get caught up in Media Ping-Pong NOTHING gets

accomplished....they need a

> STRATEGIC PLAN....<sigh>

>

> Angel Huggzz

> or Angel

> www.lymecommunity.com

>

April 27, 2007

How can they have a strategic plan if their president has committed

such a violation of integrity? What would their strategic plan be

and what would it represent?

Wait. Has dr. stricker explained what happened? To ilads? To the

patients? If so, what has he said about it?

I think the original poster of this info has brought up a violation

that was committed years ago, but it does reflect on the integrity of

the dr and the organization he represents.

I think I'm beginning to understand that this violation could be a

poor reflection on the dr, ilads and ultimately the ilads guidelines.

Is that what you're saying?

Lily Jamison

>

> Yes they do..................

>

> Connie, MI

>

April 27, 2007

I am new to LymeAid also. I have 5 years of working in the Lyme

community and have suffered from this disease since 1968. I am an

independent, free thinking individual who has nothing against large

national advocacy groups and I not against supporting their

projects, but I do not follow blindly, and I especially do not

support those that demand I follow blindly. Needless to say I am not

well received at times.

I too am very concerned as are many independent Lyme leaders that

this problem with Stricker, right or wrong, will be used to

discredit the Lyme community, which under the current conditions is

not going to be too hard to discredit us. Below is a letter I wrote

in response to another Lyme leaders question on another forum on

which many members are ILAD members. This question was posed by

another member... " Why is the Lyme community two steps forward and

five steps back? " . This person asked what could we, the Lyme

community, do to resolve this problem. Here is my response:

I brought up this very topic on _____ when people were discussing

how great things were in RI because of their bill. (My point to them

regarding the RI bill was that it was not a good bill at all.

Doctors have moved outside the state because the bill is not

specific enough on who dictates " medical necessity " for Lyme

treatment, therefore leaving the insurance companies deciding who is

fit for the " medical necessity " to receive treatment. RI Lyme

sufferers are driving out of state to see doctors, most paying all

out of pocket expenses because their insurance doesn't allow them to

go outside the network.) I am tired of people telling me the emperor

is wearing clothes when he isn't; things are not well for Lyme

patients or the LLMD's in RI, or any other state for that matter.

One thing the opposition has over us is that they are organized,

powerful, and have a clearly defined effective strategy to defeat

advances in Lyme care. Many in the Lyme community have asked...why

can't we be as united as the opposition? We certainly out number the

opposition, so why isn't the current strategy from the national Lyme

group helping Lyme sufferers and protecting the doctors who want to

treat them?

I will list several examples of experiences, complaints, and

questions coming from Lyme advocates and patients that are

indicative of the lack of cohesiveness that plagues the Lyme

community, and in some cases the deliberate interference from within

our own group:

1) One reason we lack a united front in the Lyme community is

because independent Lyme advocates and patients know that in spite

of what the large Lyme advocacy groups are telling us, that things

have progressed for us, we are no better, and in most cases doing

worse. People are no longer willing to donate time or money to these

national groups because of this. Patients are angry that we are

still supporting a strategy that isn't advancing us, and in some

cases, they are taking that anger out on the support group leaders.

2) Lyme advocates asking LDA important questions regarding the use

of petitions, use of monies, asking for transparency, and why they

are interfering with state legislation only to have these questions

fall on deaf ears, and then the person asking the questions has to

endure personal attacks from LDA supporters for raising these

questions.

3) State Lyme advocates making it clear they don't need or want the

assistance of a national Lyme group, or the state supporters for

this group, involved in any state legislative process only to have

requests ignored.

4) Legislators consistently complaining about how unpleasant it is

when these outside influences undermine their position as sponsors

of the bills, by the national Lyme group and/or their state

supporter, by having these groups deliberately contacting other

legislators to not support the bill. Many legislators have sworn off

of ever working with the Lyme community in the future because of

their experiences.

5) My personal experience fits in with the other independent Lyme

advocate complaints. Because I and others were gleaning so many

problems from other state advocates we decided to steer clear of

working with any national group on our state Lyme bill. While living

in another state, I worked on a bill that I and others made clear

from the beginning that we did not want to work on it if there were

any national Lyme group involvement; we were assured there wasn't

national involvement by the other person working on the bill, only

to have the legislator complaining that a specific person in charge

of this national group, whom we never mentioned to this

legislator, " muddled up the bill " .

If that wasn't bad enough the other person living in the state, who

gave us their word they would not work with a national group,

started a personal attack on us telling the Lyme community that we

provided incorrect data for this bill, and it lacked the initial

support it needed to get into committee, which was totally false on

all accounts.

We had to submit previous email correspondence, and provide what

and where our data was gained, to stop the assault on us and protect

our reputation. Please note...the representative stated the bill did

not lack the support to go into committee, in fact it had all the

necessary support to get to the next step, but unfortunately, he

gave his word to the person connected to the national group that he

would kill the bill no matter what if she asked him to, for which he

agreed to do; this man deeply regrets having made that promise to

her. This bill was not a dud, it was purposely killed before it

could even get to the next level to be passed.

6) Independent state Lyme advocates have complained, on more than

one occasion, that while working on lyme legislation they have had

supporters of a national group, some living in the state and some

who are not, who are contacting the legislator/legislators telling

the legislator that they are contacting them on behalf of the state

advocate, expressing how they are working with the advocate when

they are not, and that they speak for the Lyme community, when they

don't.

7) Why has ILAD's not updated and countered the guidelines against

the ridiculous IDSA guidelines?

8) Why did ILADS choose a president that has a black mark on his

reputation? The credibility of ILADS should not be put in such a

precarious state in light of the state of affairs regarding Lyme;

those opposing Lyme will use this against us.

http://grants.nih.gov/grants/guide/notice-files/not93-177.html

(Scroll down to last two paragraphs)

http://www.aegiscom/news/sc/1991/SC911114.html San Francisco

Chronicle Article

All these experiences, complaints, and questions are not examples of

progress for Lyme, but are indicative of the disunity and

frustration that the Lyme community is dealing with.

Those that have argued against me in the past state that asking

questions, bringing the frustrations of Lyme

advocates/patients/legislators to the forefront are counter

productive and nothing more than a personality clash. I will respond

as I did previously, if I had a personality that consistently had

complaints from advocates/ patients/legislators, then I would step

down. As for counter productive, there is nothing more counter

productive than ignoring the cries from the Lyme community that the

state of affairs have to change. The national group gave it their

best shot, but it is time for a change; we have decades of only a

few advances, and many years of going round in circles. _______, I

propose a change in leadership and let other great talents in the

Lyme community an opportunity to bring cohesiveness and advances to

Lyme. The current strategy needs to change, period.

Thanks- Torrey

The question was posed on LymeAid why worry about a 1991 article

now? Well...Boston, where ILADS will meet next in OCT., is in the

same hostile environment that those ridiculous IDSA guidelines came

from.

With Blumenthal looking into fraud the stakes are high and the

environment is very hostile at this point and time. This would give

the idiots against Lyme an opportunity on a silver platter to

attack. I guess we will have to hold our breath and see. I do know

the ILAD group is divided and not happy about the direction it has

taken or some of the leadership, but whether or not they will have

the courage to stand up against the ILAD leadership has yet to be

seen.

Torrey

Texas

April 27, 2007

A very good point!

************************************** See what's free at http://www.aol.com.

April 28, 2007

I tried posting yesterday, but it did not go through, so I apologize

if my first response makes it through and there is a repeat.

A little background on me...I am new to this group also. Dawn Irons

has met me personally and she knows I am not a mole, but a free

thinking, independent individual who does not follow LDA or anyone

else blindly, much to the irritation of some, right Dawn?. I have

been working in the Lyme community for 5 years now and have suffered

from this disease since 1968, not knowing what it was until late

2002. Once I got to a doctor with 20+ years experience in treating I

was able to do well and I am very close to remission.

As for Dr. Stricker's response...it doesn't matter that the others

at the Univ had the same transgressions and he was dealt with

differently than the others. First, if you do wrong then you have

done wrong, and of course you are going to be dealt with differently

than the others if you are labeled " the outsider " , though he wasn't

working on Lyme back then so I do not see the argument there. The

federal and state govt's do not take too kindly on mishandling of

money or data. It is huge for a college to get these grants to do

the research and they will let NOTHING jeopordize that.

As for ILADS...there is a negative conotation with Lyme. The

reputation of ILADS is always going to be in a precarious position,

being what the climate is against us, they have no room for risk or

error. By picking a Pres with a spot on his reputation, whether

right or wrong, was not a prudent choice.

Someone wrote earlier well this happened back in 1991, why care

about it now?

Well, the stakes have changed recently with the ridiculous IDSA

guidelines and the Blumenthal investigation into fraud. The

opposition, being the weasels they are, are going to go to any

lengths to discredit us, and it won't take much. On top of this the

hotbed for this hostility is in Boston and the next meeting for

ILADS is in Oct in Boston. I guess we will have to hold our breath

and hope the opposition does not jump on this occasion. If ILADS

goes down our treatment options, what little they are now, are at

serious risk.

AS for ILADS guidelines...they really need to respond with their

updated version disputing the IDSA, but they aren't doing that

anytime soon, which is very frustrating for a number of ILAD LLMD's

who are voicing this concern as well as many independent Lyme

advocates.

Since the discussions on this topic follows so closely to my

concerns and post several weeks ago on another group I am copying it

for all to read. I am responding to a question from another advocate

that asked " Why does the Lyme community take two steps forward and

five back? " and she asked if anyone had ideas on the solution to

this problem. Here is my response:

I brought up this very topic on _________ when people were

discussing how great things were in RI because of their bill. (My

point to them regarding the RI bill was that it was not a good bill

at all. Doctors have moved outside the state because the bill is not