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» LymeNet Flash » Questions and Discussion » Activism » IT'S ON!!! IDSA is broadcasting (Page 10)

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Author Topic: IT'S ON!!! IDSA is broadcasting
springshowers
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I agree with Ocean.

That would have been Awesome!.

There is a big missing..... Umph..

I am getting upset when they laugh and are not seemingly
taking this very seriously!????

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sometimesdilly
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ok, stricker is still awake. refutes cdc clone off thee bat.. go stricker.

"The tests are inadequate. period"

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Shosty
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Tincup, I am not talking about being quiet, I am talking about being credible.

I am not walking into a dogfight. I have been here for 10 years, and both myself and 2 kids have suffered tremendously from this disease, with no end in sight.

I have attended hearings and been mortified by the behavior or advocates, but the real reason for dismay is the total lack of effectiveness.

The tone on this board HURTS MY FAMILY, because you all affect the perception that Lyme patients are somehow "crazy". Clean it up and make all the noise you want. I write the newspapers, talk to MD's, speak up at public health presentations, educate our local schools, and have talked with my legislators. I don't hide in the corner either. But I try to form my words in ways that will make people listen with some respect, because otherwise, we get nowhere.

I have spent 5 hours today listening carefully to this hearing, and come away with a lot to think about. It is very complicated, and there are a lot of mysteries that we need more research to resolve.

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Gert
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Stricker had a very good reply!!
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Tincup
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Balanced and diverse group... yeah right baker.

150 comments taken into consideration.

What she means I think is 150 people submitted written testimony.

Whew.. it is over.

[Big Grin]

--------------------
www.TreatTheBite.com
www.DrJonesKids.org
www.MarylandLyme.org
www.LymeDoc.org

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sometimesdilly
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hearing over.
can we please not have last comment on this be one of agitation?

i'll start.


THANK YOU TINCUP!!!

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5dana8
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Tin ~ am confused ....so after hearing all the info givne today , do the panalists have the clout to change the guidelines if they choose.....?

or is this just to bering out discusiions on both sides?

--------------------
5dana8

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springshowers
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I think what is being said is that we can all say the same thing but in a more straight forward mature way that is more professional but still with the same power and intent.

And the idea is that there may be more credibility to the stand ..

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springshowers
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I think what is being said is that we can all say the same thing but in a more straight forward mature way that is more professional but still with the same power and intent.

And the idea is that there may be more credibility to the stand ..

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j_liz
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quote:
Originally posted by njlymemom:
is anyone reperesenting the AG office at the hearing? do they have a representative there attending?

I was wondering the same thing.

liz

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mtree
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....nice to be with all of you today... [hi]

[group hug] mtree

--------------------
worrying about tomorrow takes its strength away from today

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Tincup
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Thank YOU dill pickle and all who kept this alive and going.

GREAT job.

Now I'm going to do something...

Anything but Lyme.

Oh yeah... those press realses probaly aren't going to do themselves.

Back to work shortly.

Later gators!

[Big Grin]

--------------------
www.TreatTheBite.com
www.DrJonesKids.org
www.MarylandLyme.org
www.LymeDoc.org

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sometimesdilly
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tHANK YOU TINCUP AND PAT SMITH AND LORRIANE JOHNSON AND DR. LIEGNER AND DR STRICKER AND THANK YOU TO ALL OF YOU WHO MADE THIS DAY POSSIBLE.

there was nothing inevitable about having this day. just getting here has taken years and years of work most often by those who are Lyme sufferers too.

I can't begin to express my gratitude for this.

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Nicole_Denise
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Is the archive really not going to be up until Monday or Tuesday? Darn.
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nenet
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Thank you so much to everyone that gave such wonderful comments and synopses of the individual presenters.

It was very very helpful to all of us, but especially for those of us with neurocognitive and other symptoms that make it so hard to focus.

This went far better than I expected. I am hopeful, but pragmatic about possible outcomes. I defintely detected some open-minded questions and tentative conclusions coming from some of the panelists.

--------------------
Dr. C's Western Blot Explanation

Lymenet Success Stories

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Medical & Scientific Literature on Lyme

"Long-Term Antibiotic Therapy Improves Persistent Symptoms Associated with Lyme Disease"

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Dekrator48
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Thank you sometimesdilly and tincup for your hard work in keeping up with this today!

There may have been lots of others who posted alot as well, so forgive me for not acknowledging all of you....I have not read all of the comments.

I watched as much as I could today and plan to watch the parts I missed in the archives.

Thank you again!!! Good work!!!!!!!!!!!!!

--------------------
The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.

"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11

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AliG
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They decide, line by line, whether to keep or scrap info or whether they need to be scrapped completely & rewritten.

If determined to need rewrite, IDSA gets to pick a new panel to do that.

--------------------
Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner.

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Ocean
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I agree mtree,

I can't believe I watched nearly the whole thing!

I don't feel any better...seems most of the panelists have their minds set before the hearing even started.

--------------------
http://www.healingfromlymedisease.blogspot.com/

Sick since 1996...Diagnosed 10/2008

IgM:23-25 IND, 31+++, 39 IND, 41 +++
IgG: 31 IND, 41++, 58+

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pab
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Thanks everyone!

--------------------
Peggy

~ ~ Hope is a powerful medicine. ~ ~

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Nicole_Denise
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Yes- thank you Tincup and vermont and sometimesdilly et. all. Excellent work!
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Tincup
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mtree...

Bye bye.. can't find the right smilie for it.... nice to see ya!

Someone said.. sorry I am getting tired.

"Tin ~ am confused ....so after hearing all the info givne today , do the panalists have the clout to change the guidelines if they choose.....?"

The short of it all...

The panelists were chosen by the IDSA. Most are IDSA.

They have.. after reading the testimony and reviewing the oral presentations...

Can do one of three things.

1. Leave them as is.

2. Make changes.

3. Ditch them all.

They must vote and have a 75 percent agreement to each recommendation that they consider changing.

Please don't quote me exactly on this. I'm drained and this is from memory only.

But I am close, if not right on with my answer.

[Big Grin]

--------------------
www.TreatTheBite.com
www.DrJonesKids.org
www.MarylandLyme.org
www.LymeDoc.org

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Tincup
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Someone asked about the AG.

I believe they were to have someone there to watch?

I also believe someone or more than one from Congress was suppose to be there too.

I can't confirm but that is what I heard somewhere.

--------------------
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www.MarylandLyme.org
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j_liz
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Do you think ILADS, LDA, or CALDA (or any other LL group) will put anything up on their websites saying how they feel it all went?

If so, who do you think would and do you think it would be soon?

I feel so antsy!

Thanks to all who took part on our behalf at the hearing!

And thanks to all here who kept me company and let me know what was going on.

liz

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Tincup
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Oh, do you remember that fly that was bugging me?

Now I need some windex and towels.

I couldn't swat him so while sitting here listening I took my bowl of garden fresh cherry tomatoes and every time he flew by I was hurling them, one at a time, at him.

[lol]

Now I am out of tomatoes.. and he just buzzed me again.

[Big Grin]

--------------------
www.TreatTheBite.com
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Leelee
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Couldn't watch much b/c I was too sick, but did see the last five minutes.

I thought the doctor to the right (left?) of Pat Baker was rude, rude, rude! Packing up his belongings and checking his cell phone screen while she was talking and summarizing.

It was if he was saying, "well, we satisfied this stupid requirement and had this hearing. Now, on to bigger and better things".

Did I hear correctly that we have to wait until the end of the year before we know the outcome?

--------------------
The ultimate measure of a man is not where he stands in moments of comfort and convenience, but where he stands at times of challenge and controversy. Martin Luther King,Jr

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TerryK
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So the CDC person, Dr. Johnson said that OspA (31 kDa) and OspB (34 kDa)are found mostly in ticks - not hosts(us) and they are capable of being induced by inflammation?????

Is that correct????

Was she saying that 31 and 34 may show up as a result of inflammation only - not infection????

Terry

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Tincup
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jliz said.. "Do you think ILADS, LDA, or CALDA (or any other LL group) will put anything up on their websites saying how they feel it all went?"

I am working on press releases with them/for them as we speak.

And yes, once we all get a chance to regroup, there willl be stuff out there.

It takes time though... so you'll need to check there later.

[Big Grin]

PS. Lorraine's blog at CALDA website may be the place to go first. My bet is we will see stuff there first.

We are all exhausted.. it has been a long 25 years.

--------------------
www.TreatTheBite.com
www.DrJonesKids.org
www.MarylandLyme.org
www.LymeDoc.org

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Tincup
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TerryK...

I have no clue. Sorry. I let the numbers slide by me when the CDC was talking.

It is just stupid stuff the IDSA fed her... and it means nothing.

You can watch it over again once it is online. Wish I could answer better for you.

[Big Grin]

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Ocean
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Terry,

I was wondering about that too! It's funny because when I got my inflammation marker blood tests, they were great, my LLMD said I sure look good on paper!

I would think if I had a lot of inflammation, my c4 or c3 would have shown SOMETHING high. I tested most positive on band 31, so I am very interested in this.

Still wondering though, how when she said the vaccine was developed, using Osp A that somehow it PREVENTS lyme....?

I'm tired and I have to get going somewhere, will be back later to check on discussion...I'm glad everyone who could watch did!

Ocean

--------------------
http://www.healingfromlymedisease.blogspot.com/

Sick since 1996...Diagnosed 10/2008

IgM:23-25 IND, 31+++, 39 IND, 41 +++
IgG: 31 IND, 41++, 58+

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Nicole_Denise
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Tincup- I am confused! I thought your fly was a metahpor, but if it was, I'm at a loss to follow you with the tomatoes!

Was it a real fly, or an annoying duck?

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nomoremuscles
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Thanks to everyone who worked so hard to make this happen. And to everyone who sat and typed out careful commentary of events.

I am proud and honored to be part of this patient population.

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5dana8
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yikes, really wish i could read& follow this thread i but cant [Frown]

But would like to ba able to ask a few questions,... who picked the panalist's ? where they non-biased?

and if so do they have the power to change the guidelines?....

will todays discussion effect any change? was it successful?

~ sorry if this question has already been asked and anwered. been waiting for this day for so long & ironically can't figure how it can out. bummer [shake]

--------------------
5dana8

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Tincup
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HA!

It was a real fly.

The only one in the house... and it had to hang out by me ALL day today.

It was almost as annoying as the ducks!

But I have to admit... the computer screen has a wee bit of tomato juice on it too.

I sometimes mistake annoying flies for annoying ducks.

[Big Grin]

--------------------
www.TreatTheBite.com
www.DrJonesKids.org
www.MarylandLyme.org
www.LymeDoc.org

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nomoremuscles
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As wonderful as our presenters were, I do not hold out much hope for REAL change at this point in time.

Unfortunately, I think there is a religious quality to this debate. And like religious debates, or even political ones, the participants rarely -- if ever -- are swayed by logic or reason, especially when it is not presented from their own bias.

All you have to do is look at those sorts of debates here on Lymenet (or even in our supreme court), to see that most discard whatever does not confirm their own biases. I think, after watching the panelists, and particularly after listening to their questions and comments, this is what's likely to happen here.

I do hope I am wrong, though.

Once again, thanks to all.

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sometimesdilly
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IDSA has already issued a press release. gee. they type fast or it was already prepared. any guesses on that?

i'm looking and tracking responses to today's panel in another thread...

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Parisa
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Thanks to everyone for taking notes and summarizing for the rest of us!
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Maryland Mom
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I watched as much of the broadcast today as I could...and I too am thankful to those of you who posted so diligently with updates.

I have not not been active on this site for quite some time, for numerous personal and health reasons, but it's great to see that Lymenet can still be counted on to say things like they are!

It saddens me to see dissention among the ranks here, though. I think we must be vocal, we must stay vigilant against these IDSA idiots trying to save their butts, but we should try to do it tactfully whenever possible. Others ARE listening.

Although IDSA seemed to try hard to stack things in their favor, hopefully it will be at least a beginning in a changing of the tide.

Meanwhile, let's stick together and support each other in the spirit in which this site was intended.

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sometimesdilly
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sorry if redundant-

Lyme review panel members:

Carol J. Baker, MD,
Chair Baylor College of Medicine
Houston, TX

William A. Charini, MD
Peabody, MA

Paul H. Duray, MD (retired)
Westwood, MA

Paul M. Lantos, MD
Duke University Medical Center
Durham, NC

Gerald Medoff, MD
Washington University School of Medicine
St. Louis, MO

Manuel H. Moro, DVM, MPH, PhD
National Institutes of Health
Bethesda, MD

David M. Mushatt, MD, MPH & TM
Tulane University School of Medicine
New Orleans, LA

Jeffrey Parsonnet, MD
Dartmouth‐Hitchcock Medical Center
Lebanon, NH

Cmdr. John W. Sanders, MD
U.S. Naval Medical Research Center Detachment, Peru

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coltman
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quote:

If this panel knows there is doubt about any aspect of the guidlines and choose to leave it in, they leave themselves open to be held responsible by those harmed by the faulty information.


As much as I dislike lawsuit happy population in America I think that is the case when class action lawsuit should happen.

People should really be held responsible for this kind of crap.Because of their guidelines people suffer and their health is permanently damaged.

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Gert
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Would anyone know how long it takes to review and make a decision?
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losferwrds
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quote:
Originally posted by j_liz:
quote:
Originally posted by njlymemom:
is anyone reperesenting the AG office at the hearing? do they have a representative there attending?

I was wondering the same thing.

liz

The omnibudman the AG appointed is an IDSA member, his name is the initail meeting press release on the IDSA site
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losferwrds
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quote:
Originally posted by coltman:
quote:

If this panel knows there is doubt about any aspect of the guidlines and choose to leave it in, they leave themselves open to be held responsible by those harmed by the faulty information.


As much as I dislike lawsuit happy population in America I think that is the case when class action lawsuit should happen.

People should really be held responsible for this kind of crap.Because of their guidelines people suffer and their health is permanently damaged.

You can't sue the IDSA because they don't force anyone to adhere to their guidelines, its the ins cos and lawyers that use them as gospel. Not to mention their members that get paid for "Expert Testimony"
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Tincup
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TerryK..

As I was doing fact checking here for one of my papers I saw your link. Thanks so much it saved me a lot of time!

I would like to share it with others so they feel the impact of some of the "nice" terms the IDSA used today to describe Lyme patients.

Of course they are too sophisticated to call us "nuts"... but a nut by any other name is still a nut.

Using the nicer terms found here allows them to perpetuate it and get away with it.

```````````````````````````````````````````````

The term functional somatic syndrome has been applied to
several related syndromes characterized more by symp-
toms, suffering, and disability than by consistently demon-
strable tissue abnormality.

These syndromes include multiple chemical sensitivity, the sick building syndrome, repetition stress injury, the side effects of silicone breast implants, the Gulf War syndrome, chronic whiplash, the chronic fatigue syndrome, the irritable bowel syndrome, and fibromyalgia.

My note- [Lyme was also mentioned later on in this article]

Patients with functional somatic syndromes have explicit and highly elaborated self-diagnoses, and their symptoms are often refractory to reassurance, explanation, and standard treatment of symptoms.

They share similar phenomenologies, high rates of co-occur-
rence, similar epidemiologic characteristics, and higher-
than-expected prevalences of psychiatric comorbidity.

Although discrete pathophysiologic causes may ultimately
be found in some patients with functional somatic syn-
dromes, the suffering of these patients is exacerbated by a
self-perpetuating, self-validating cycle in which common,
endemic, somatic symptoms...

are incorrectly attributed to serious abnormality, reinforcing the patient's belief that he or she has a serious disease.

Four psychosocial factors propel this cycle of symptom amplification:

the belief that one has a serious disease;

the expectation that one's condition is likely to worsen;

the ``sick role,'' including the effects of litigation and compensation;

and the alarming portrayal of the condition as catastrophic and disabling.

The climate surrounding functional somatic syndromes
includes sensationalized media coverage, profound suspi-
cion of medical expertise and physicians,

the mobilization of parties with a vested self-interest in the status of functional somatic syndromes, litigation,

and a clinical approach that overemphasizes the biomedical and ignores psychosocial factors.

All of these influences exacerbate and perpetuate the somatic distress of patients with functional somatic syndromes, heighten their fears and pessimistic expectations, prolong their disability, and reinforce their sick role.

A six-step strategy for helping patients with functional somatic syndromes is presented here.

`````````````````````````````````````````````

To see more "nice" words describing how we are already nuts before they even see us as a patient... and often before we had a tick bite.... and how they use their "nice", polite words to destroy people's lives...

http://www.annals.org/cgi/reprint/130/11/910.pdf

--------------------
www.TreatTheBite.com
www.DrJonesKids.org
www.MarylandLyme.org
www.LymeDoc.org

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seekhelp
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It was an interesting debate. Both sides had viewpoints. I didn't walk away with a cozy feeling knowing chronic Lyme in humans exists and it is the cause of my illness.

Very intelligent people spoke. The bottom line seems to be the science isn't here yet to confirm our symptomology and long-term effects of Bb.

I learned first hand some of these IDSA members came across very condescending. Right or wrong, I found that upsetting.

Many of us are loyal advocates because LLMDs and pro-chronic Lyme advocates are saying what we want to hear. I'm not sure if that's enough to get a panel to re-write guidelines completely or allow for open treatment based on clinical Dx as Lorraine Johnson wants (who was an incredible speaker too). This would cost the insurer BILLIONS.

I think to the IDSA it's like a criminal trial when someone is on death row....must be guilty w/o a doubt to convict. Logically, it shouldn't be like that in medicine, but it is. I think the best that can ever happen is LLMDs may get a free pass to treat without persecution, but patients will continue to front the entire financial bill of unproven and termed dangerous protocols.

My guess is the board would only make this concession to say hey we did something. if it costs the top dogs $$$ and risks the reputation of the elite former iDSA panel members, no way jose. [Frown]

All I know is I hope I never have to treat with that rheumy who testified... [Mad]

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5dana8
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want to thank all of you who have better gray matter to follow along today and patiently explain things , i deeply appreciate it.

and a huge thanks to all the people who are working so hard on our behalf and gave some awesome speach's at the hearing today too.

but i am very sad to hear that maybe the panalist's where choosen by the IDSA and need a 75% collective vote for any changes. [Frown]

so if the panalists where not unbiased & selected by the IDSA isn't this a conflict of interest? kinda ironic...

and why would they collectively vote like against themselves ?

Won't they have to reverse much of what they have been saying the last 25 plus years & admit to being wrong on so many things?

Can't really see this happening & hope i am so wrong about it and my usual lyme confusion

trying hard not to be pesimistic

[ 07-30-2009, 08:51 PM: Message edited by: 5dana8 ]

--------------------
5dana8

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AliG
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Sorry I didn't say this sooner, I had to start dinner for the kids in my house.

Thank you to all who did such an EXCELLENT job of keeping up with posting notes throughout. I could never have hoped to keep up with typing the play-by-play. I applaud you all! [bow]

Thank you to all of the presenters who so eloquently illustrated the egregious flaws and their remifications to those these guidelines should have been designed to help. [bow]

Thank you to all who made this day possible with their tireless efforts and "VOCAL"-NESS[sic] [bow]

Thank you to any panelists who were able to listen objectively to the evidence and give consideration to our plight. My hope is that they will find some compassion in their hearts and do the right thing, despite whatever peer pressure they may have to stand up to.

I pray to God to give them strength to make some changes.

75% supermajority must agree to EACH item of those guidelines to have it remain. Lets hope that the garbage gets thrown in the trash & we actually get something that will HELP us all get well faster, with less confusion & aggrivation, and unable to be used for insurance denial of treatment.

I'd also like to thank all who injected humor & levity into this thread during such a stressful event and :hugs: to all of you that I haven't really seen around here for quite a while.

It was so nice to have such good company and some interim entertainment! [Big Grin]

--------------------
Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner.

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bettyg
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dorothy,
THANK YOU for typing up all these notes today for us all to learn from. excellent as usual [Smile] hugs/kisses


lorraine & calda,
thank you ALL for creating this summary
this summary and helping us get to hear this without giving our names, emails, and our privacy invaded!

doug orrel,
you mentioned about getting willy borgdorfer to speak at congress at what he DID NOT SAY when interviewed with UNDER OUR SKIN director andy wilson.

fyi, 1 of our lymenet.org members called willy several months ago and talked 45 minutes to him. he did ask him that question.

basicly it was he DID SAY everything to andy.

this member was going to type up notes of their joint conversation and called willy back to get permission.

willy asked that he send him the notes FIRST before they are put online for all to read.

this member then got very sick on his lyme treatment, and we haven't heard if he got them typed, and sent to willy for his approval. we will learn more in the future about their convverston.

dr. burrascano,
thanks for your comments as the day progressed and your long post afterwards.

i missed ALL afternoon; when they took their lunch hour, i went to sleep since i didn't get to bed until 3 am and on here 7am to listen & then pc problems.

slept 2 hrs. and woke up to dr. phillips slide presentations galore!! WOW can he read fast & knew his stuff. i was really impressed, and what a nice looking young l,lmd we have!

when i woke up i heard 5-10 minutes only and then 10 min. break.

took hubby to neurologist for his parkinson's appt. got there they had NO RECORDS saying an appt. was made so we waited 1 hr. for them to work us in!

got home & it had just endedl; so i really appreciate reading all your notes!!

so when it's ready; i'll have to listen to the afternoon session only.

dr. volkmann ...OUTSTANDING, WELL DONE, and read somewhere you are very SICK, and yet you were on TOP OF YOUR GAME presenting good things to all w/those great slides.

dr. volkmann, we hope you recover soon from your own illness, and can enjoy your GOLDEN years.

glad you were on our ILADS chronic lyme literate md side!! YOU WERE MOST IMPRESSIVE.

above someone stated this panel was only to decide if anythign needed to be done with 06 guidelines; i was under the impression if they decided yes, THEY would be the ones doing the work!!

govt. at its best; more red tape and trees cut down!! HOG WASH.

BettyG
Iowa lyme activist


enjoyed reading your comments above &ALL DETAILED ONES.

thanks to ALL THE BEHIND THE SCENES folks who organized, compiled, and worked endless hours preparing for today.

now, let's all take a good rest!! [group hug] [kiss]

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bettyg
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someone mentioned about all the GUESTS; many of us members have chosen to show GUESTS so folks do NOT know we are on the board and then send lots of pms, etc. to us.

i used to think it was the OTHER SIDE; now i know SOME ARE; rest of numbers are us members [Smile]

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Leelee
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I sit here sick, sick, sick. I have completed their silly 28 days of abx (thankfully my LLMD doesn't agree with the IDSA) and yet I am no closer to being healed than I was the past 20 -30 years of misdiagnosis.

Do these people not have pets that carry ticks? Do they never step off the sidewalk in a park? How is they NEVER get bitten? In my world everybody has had at least one bite.

Do they ever do research on anything except the same old things from the same old point of view? Surely there is much more to be learned about ticks, vectors and Lyme. Good grief! They should be working on that. Then they could be called heroes instead of ducks.

--------------------
The ultimate measure of a man is not where he stands in moments of comfort and convenience, but where he stands at times of challenge and controversy. Martin Luther King,Jr

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5dana8
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Here's ABC news coverage of today's hearing~

http://tiny.cc/8cGQF

Here's another action news6 ABC new's story ~

http://tiny.cc/TXYOt


If you missed the IDSA Lyme Disease hearings today,
here are some speaker's presentations you can download in pdf files ~

http://www.lymedisease.org/news/idsa_lyme_hearing/174.html

--------------------
5dana8

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seekhelp
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I don't recall one speaker referencing any work/studies done by Alan MacDonald? How on earth is this possible when he was the lyme guru researcher in UOS? That made no sense to me.
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Leelee
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Thank you 5dana8. That particular ABC News team has always been sympathetic to our cause.

They did a good job.

--------------------
The ultimate measure of a man is not where he stands in moments of comfort and convenience, but where he stands at times of challenge and controversy. Martin Luther King,Jr

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Pinelady
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Enjoyed being here today. If nothing else is accomplished -I enjoyed the company. But in my heart WE WON.

--------------------
Suspected Lyme 07 Test neg One band migrating in IgG region
unable to identify.Igenex Jan.09IFA titer 1:40 IND
IgM neg pos
31 +++ 34 IND 39 IND 41 IND 83-93 +
DX:Neuroborreliosis

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JKMMC09
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wow, thank you all for doing this!

So...what do you all think? Whose speach was the best? (I think Dr. Liegner, but of course, I'm biased toward my own LLMD [Smile]

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kelmo
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I missed everything today, so it was great to catch up on this thread. Thank you to all who made it seem real.
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TerryK
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5dana thanks for the links.

TC - glad the file was helpful. I cannot understand why the 2 out of the few that testified on the IDSA side fell back on the psychological BS diagnosis.

How do they explain the huge number of patients like us with easily documented dysautonomia and other verifiable abnormalities??

They must think we are powerfully strong mentally to be able to cause our blood pressures to drop 40 points when we stand up or to bring our pulse up to 100+ while we are just sitting in our chairs. Wow, I can even lower my red blood cell mass down to 60% of normal.

I found that several members of the panel did not seem to really listen and acted clearly biased towards IDSA view. One made it clear that he didn't believe the allegations as did one of the speakers. I also felt that some of the panel members clearly displayed an "attitdue" towards Dr. S.

Baker missed several points and paid no attention when Philips said that chronic lyme patients don't necessarily have inflammation.

I think some on the panel could be buried in an avalanche of "credible" evidence and it would make no difference in how they proceed.

I am amazed at how they jump over every hurdle with completely unproven speculation. And this coming from doctor's who supposedly value evidence based medicine.

Shapiro said that the burden falls on persons to prove that long term abx are effective in scientific controlled manner even if you believe some of the critisims are valid.

Do you think for a minute that any one of them would forgo long term abx if they were suffering from the type of symptoms that we have and thought they had lyme disease just because it is not proven in a scientific controlled manner? If you do, then I have a bridge for sale!!!

So many fantastic presentations. I am so appreciative of all the effort that so many put forth to present this information. I wish I could give each and every one of them a big hug from the bottom of my heart.

Terry

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bettyg
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thanks dana for links; i added them all to my LYME VIDEO COLLECTION at top of support!!
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Tincup
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I am still up researching, working on articles and putting together press releases.

Nobody here but me and Conway Twitty right now.

I'm running out of steam.....

I wanted to finish this all up tonight... so I could get away from the computer for the first time in weeks.

It ain't going to happen.

But we made history today.

That's a good thing.

--------------------
www.TreatTheBite.com
www.DrJonesKids.org
www.MarylandLyme.org
www.LymeDoc.org

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bettyg
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tincup,

you are NOT alone; 24 of us spread out on the forums here as we speak!!

yes, you need a DEFINITE 1 WK. REPRIEVE of all the behind the scenes work you've done.

HUGE heartfelt thanks for doing what you do best .... activism! [group hug] [kiss]

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sizzled
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Is there anywhere we can post comments on the newspaper articles about the meeting???

IDSA should know...."We won't go away"!

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Vermont_Lymie
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Tincup, Thank you for keeping a sense of humor going yesterday; that was really important, and thank you for all your hard work!

Because when I hear close-minded guys like Shapiro, Baker, Steere and that rediculous pediatrician, (Snoon?), it can get very depressing.

Thanks to dilly and Melanie for their great synopsis, and everyone who made comments.

I was not impressed with the IDSA panel and 'experts.' It is like Dr. Liegner said about Thomas Kuhn's book, The Structure of Scientific Revolutions -- a new paradigm is emerging, and these idiots are going to fight the evidence every step of the way.

Their world is crumbling and can only exist if they shut out increasing evidence that they got it all wrong about lyme disease, but they are going to cling to it!

Like TerryK said above, these IDSA guys could be buried in a mountain of evidence contradicting their guidelines, and they will ignore it for as long as they can -- until forced not to, by legal or professional sanction.

After all the solid critiques of the IDSA evidence base, one of the IDSA geeks was asked (in the afternoon, don't remember if it was Shapiro or Steere), would you still rate the IDSA evidence base for its old guidelines as "1E" -- highest level of evidence.

Simply ignoring everything that had been said to demonstrate why the IDSA evidence base for their guidelines does not exist in the manner in which they interpreted it, of course this IDiot said yes!

But the good news is they cannot fight reality for ever, and it is great they were forced to "listen" to testimony critiqueing their work, even if these IDSA reps have totally closed minds.

Cause other people are listening who are open to scientific evidence and the truth. We shall overcome.

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Truthfinder
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Wow! Thank you all so much for the terrific 'blow by blow' coverage on this thread. I had some time to follow along yesterday.... it almost felt like I was there watching.

Many, many thanks.

--------------------
Tracy
.... Prayers for the Lyme Community - every day at 6 p.m. Pacific Time and 9 p.m. Eastern Time just take a few moments to say a prayer wherever you are.

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Melanie Reber
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Just wanted to add my thanks as well to each of you for your contributions. I also feel as if we made history yesterday. And if nothing else... we were heard.

We can never convince anyone of anything once their minds are already made up... however, I did witness a few minds that were still open to dialog, and that, in itself, was most gratifying.

I do hope that we can try not to be too discouraged by some of the 'testimony' presented... but instead, take heart... knowing that so many are giving their all to present another reality that we live and die with each day.

My utmost appreciation and sincere gratitude to everyone involved.

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Melanie Reber
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From Rick with LymeInfo:

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

The all-day hearing hosted by The Infectious Disease Society of America (IDSA) Lyme Disease Review Panel on July 30, 2009 was an opportunity for patients, physicians and scientists to present information relevant to the 2006 IDSA Lyme Disease Guidelines.

According to the IDSA, "The webcast will be archived and available via this site for viewing at your convenience. It will be posted by Tuesday, August 4 [2009]. In the meantime, the slides and/or presentations from the hearing may be found by clicking on the links below."

http://www.idsociety.org/Content.aspx?id=15026

-Rick

**********

(thanks Rick!)

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Lou B
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Moving this Topic to Activism.

--------------------
Lou B
 -

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sometimesdilly
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thanks for letting this thread stay open in medical all day yesterday Lou.

i'm sure more folks tuned in because they found it there rather than here in activism.

dill

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5dana8
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Thanks too Lou for letting this thread stay open in medical yesterday [Smile]

--------------------
5dana8

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farraday
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quote:
Originally posted by Tincup:
AliG..

"She kicked Klempner's butt!"

HA! You're right.

Dilly- I didn't miss any.. computer here fine.

[Big Grin]



--------------------
DOCTOR: "I don't think you are sick."
PATIENT: "We are all entitled to our opinions. I don't think you are a doctor."

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farraday
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Sorry for my screwed up reply. I wanted to say that my husband has PhD in statistics (and other fields). He watched carefully and commented frequently that the study was ridiculously flawed. He took many notes and wants to get the video to study it.

I told him to apply for a grant and work with someone to do a new study! He said he has some ideas.....I will try to get him to post here.

He has been reading everything he can find on LD since I was diagnosed. He called labs and talked to their owners. He was mad that it took 21 years to get me dxd!

After he watched yesterday he got even madder! [cussing] But we were both impressed by the ILADS presenters. They were outstanding!

--------------------
DOCTOR: "I don't think you are sick."
PATIENT: "We are all entitled to our opinions. I don't think you are a doctor."

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Tincup
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For the patients, our advocates and our doctors...

http://www.youtube.com/watch?v=xFWTMgcBYSo

Thank you!

[Big Grin]

--------------------
www.TreatTheBite.com
www.DrJonesKids.org
www.MarylandLyme.org
www.LymeDoc.org

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farraday
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Thanks to all of you for the wonderful comments! I had trouble following things and it really helps to read your posts. You did a great job to help all of us to understand what was said. Thanks so much!

--------------------
DOCTOR: "I don't think you are sick."
PATIENT: "We are all entitled to our opinions. I don't think you are a doctor."

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bettyg
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eliz posted this


Actually IDSA has posted ALL presenters powerpoints and PDFs. **********************************************


Just understand if you view them that they are not necessarily the actual presentation, verbatim, they are the typed speeches and powerpoints that were given to the panel prior to the presentation.


The actual hearing had question and answers after the presentation asked and none of that is included here.
************************************************************

http://www.idsociety.org/Content.aspx?id=15026

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bettyg
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farraday,

with your husband's background, please ask him to contact ILADS hq.

www.ilads.org and use contact me and tell them about his background and what his suggestions might be...
working together to get the best solutions to help us all.


farraday, so glad your hubby watched with you taking notes. now he can click on idsa's link for WRITTEN presentations for now until audible ones are available to hear Q/A sessions. [Smile] hugs/kisses to you both


i feel SO MUCH PRIDE for all on our side who testified with their well ORGANIZED speeches, effective slides, and complete honesty!! that's as good as it gets folks [Smile]

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Leelee
Frequent Contributor (1K+ posts)
Member # 19112

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quote:
Originally posted by Tincup:
For the patients, our advocates and our doctors...

http://www.youtube.com/watch?v=xFWTMgcBYSo

Thank you!

[Big Grin]

That is beautiful TinCup. I can't stop crying.

--------------------
The ultimate measure of a man is not where he stands in moments of comfort and convenience, but where he stands at times of challenge and controversy. Martin Luther King,Jr

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bettyg
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tincup,

the link showing the past lyme rally was wonderful,

what is the name of the song and sung by WHO?
******************************************************

folks, please sign into RATE THIS!!
******************************************

i was 1st to give it 5 stars!! no comments allowed which is good since the trolls get so nasty & hard to get their comments off something pure and GOOD!

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