I referred to her once in passing, as "hot pants", as a joke... and I also did it since we aren't suppose to use doctors names on the board and we hadn't "named" her yet.
Maybe I was not too far off though... looking at this? Or would "hot HEAD" be better?
Seems like Ms. McStupid.... the name I'd choose after reading this letter... is not happy. Sounds a lot like him, don't ya think?
But I do so admire the way she has learned from the IDSA clan to refer to us as an insignificant.... "small, but vocal group".
That is kind of like saying the grains of sand on the beach are a "small but vocal group".
Anyhow... be sure to put on your best rain suit before reading her letter.... cause the way she is spewing and exploding all over the place, you don't want to get any IDSA cooties on you!
Lyme Article Was Riddled with Inaccuracies--Putting Patients at Risk
The article entitled ``Attorney General Forces Infectious Disease Society of America to redo Lyme guidelines due to flawed development process'' that appeared in the Journal of Medical Ethics purporting to explain the agreement between the Connecticut Attorney General and the Infectious Diseases Society of America (IDSA) regarding its Lyme disease guideline was extremely disturbing.
This article is riddled with inaccuracies and misleading information.
The article is the latest salvo from a small but vocal group of physicians and patients who attribute a wide range of vague symptoms to what they call ``chronic'' Lyme disease.
To treat ``chronic'' Lyme infection, this self-described ``Lyme-literate'' group promotes the use of long-term antibiotics - often delivered intravenously for months or even years.
The cost of this treatment must be borne by patients themselves, leading a discerning person to question the authors' interest in the real reason why they want the treatment guidelines changed.
Blinded, randomized controlled trials show that long-term antibiotic treatment is not effective for any condition described as ``chronic Lyme'' - a condition that currently has no consistent diagnostic markers.
Far worse, this treatment has been shown to be extremely risky, potentially leading to fatal infections, serious drug reactions and fostering development of life-threatening drug-resistant superbugs.
That this group continues to use its assaults on the IDSA and its Lyme disease guidelines as a platform to promote a not only unproven but expensive and potentially dangerous therapy is, we believe, clearly unethical.
Among the many inaccuracies in this article, the most egregious charge is that the IDSA's Lyme disease guidelines ``excluded most Lyme patients and denied them treatment for their illness.''
It is difficult to find an accurate sentiment in that statement.
To start with, the guidelines are simply that, guidelines, and by their very nature do not ``exclude'' patients, nor ``deny'' them treatment.
Further, the authors seem intentionally to confuse Lyme disease - a proven and highly treatable illness - with ``chronic'' Lyme infection, an unproven condition that a small group of doctors may provide as a ``diagnosis'' for patients with vague but often serious symptoms.
There is no solid evidence of the existence of ``chronic'' Lyme infection.
Although we do not doubt that there are patients who initially were treated for Lyme disease infection and subsequently have ongoing, vague symptoms, we are concerned these patients likely are suffering from a different or new illness and are receiving potentially dangerous ``treatment'' rather than being evaluated, properly diagnosed, and treated appropriately.
Although a comprehensive response to the remaining charges would require an entire article, following are our comments regarding several of the most salient.
* Regarding the agreement (not ``settlement'') between the IDSA and the Connecticut Attorney General, the IDSA was not forced to ``redo'' the Lyme guidelines and no ``antitrust laws'' were broken.
The Lyme disease guidelines remain in effect.
IDSA voluntarily agreed to a special one-time review of the Lyme disease guidelines. IDSA paid no fines or penalties and is not restricted from promulgating guidelines of Lyme disease or other conditions.
* The statement ``at least 21 studies documenting death in patients with this potentially devastating tick-borne illness'' is patently wrong.
Lyme disease is not a life-threatening disease. This statement is reminiscent of a tabloid headline - the patients may have had Lyme disease, and may have died, but not of Lyme disease.
* The IDSA Lyme disease guideline panel spent months scouring all of the Lyme disease research.
Specific studies were not ``selectively ignored,'' but in fact stringently reviewed along with all of the other research.
Based on widely accepted principles of evidence-based medicine, some studies were determined to lack scientific rigor, and were therefore not used as a basis for treatment guidelines.
* The comment that the guidelines are ``treated as mandatory'' and end up ``denying'' treatment to patients is inaccurate.
The purpose of the guidelines is to attempt to guide physicians in providing the highest- quality treatment that is not harmful to patients.
However, they are guidelines, not mandates.
* IDSA does not have nor seek monopoly power. We do not work with insurers on any guidelines, nor do we develop our guidelines for the sake of insurers.
We develop guidelines to provide guidance to our members, with the ultimate goal of ensuring the best quality in patient care and to protect the public's health.
* Regarding the makeup of the guidelines panel, the IDSA chose the panel of experts that we believe is the most knowledgeable for the job.
Further, the panel was not limited to ``researchers known to have a bias against the diagnosis and treatment of Lyme disease.''
In fact, the point of the panel was to guide physicians in treating Lyme disease, a known and highly treatable disease.
* The remark that some of the panel members were working on the development of vaccines is irrelevant.
There are no Lyme disease vaccines approved for use in humans and the IDSA has made no recommendations in that regard.
The vaccine mentioned in the article was previously in development, but the decision not to manufacture it was made before the guidelines were published.
* Regarding conflicts of interest among panel members, physicians with expertise in a specialty of medicine are often called upon to serve as expert witnesses, just as lawyers are often asked to do.
This is a professional activity, and compensation is relatively modest.
The same is true of consultation fees with commercial organizations, as long as specific guidelines are followed.
The physicians on our panel followed those guidelines.
The implication that physicians on the guidelines panel stand to monetarily gain from their recommendations seems particularly hypocritical coming from a group of practitioners who stand to gain financially from treating vulnerable patients with an unproven condition using an unproven, expensive, invasive and risky long-term therapy.
The IDSA is widely recognized as the pre-eminent authority on the treatment of infectious disease.
We are in good company in our lack of support of the therapy advocated by the authors of this article, including the American Academy of Pediatrics, the American College of Physicians, the Medical Letter, the Centers for Disease Control and Prevention (CDC), the National Institutes of Health (NIH), and even review articles in major medical journals such as the New England Journal of Medicine.
We take our responsibility as protectors of the public health seriously, and as physicians who stand by our Hippocratic Oath to ``above all, do no harm,'' we wish there were more evidence that these authors and the groups they represent did the same.
Sincerely, Anne Gershon President, IDSA
Posted by Carol in PA (Member # 5338) on :
quote: The implication that physicians on the guidelines panel stand to monetarily gain from their recommendations seems particularly hypocritical coming from a group of practitioners who stand to gain financially from treating vulnerable patients with an unproven condition using an unproven, expensive, invasive and risky long-term therapy.
You could make the same charges against physicians who treat cancer.
Carol
Posted by bettyg (Member # 6147) on :
hog wash at its best!! Posted by Tincup (Member # 5829) on :
"There is no solid evidence of the existence of ``chronic'' Lyme infection."
HO HO HO!
Hey TuTu... let's show 'em our chronic Lyme!
Posted by Pinelady (Member # 18524) on :
Do you believe this woman? I would like to see her
overseas bank account. This is a crime against
Americans in my opinion. Obama hear this: Tuskegee
was just a drop in the bucket compared to the
Crimes against LYME.
Posted by Wonko (Member # 18318) on :
"Based on widely accepted principles of evidence-based medicine, some studies were determined to lack scientific rigor, and were therefore not used as a basis for treatment guidelines."
I agree that we lack the best evidence right now--because the testing simply isn't advanced enough to support our situation clearly.
Why can't they accept that, or even consider it for a moment, listen to us?
I know it's more important to focus on getting well than on these issues, but one can't hide completely from the controversy.
Posted by METALLlC BLUE (Member # 6628) on :
Odd, I could have sworn I just posted over 100 studies demonstrating that Chronic Lyme Disease "dose" exist.
Posted by Melodymaker (Member # 16434) on :
Hey TC. is that where the Chronic Lyme shows up?? No wonder I never saw the rash!!! Posted by Geneal (Member # 10375) on :
"The remark that some of the panel members were
Working on the development of vaccines is irrelevent".
"Lyme disease is not a life threatening disease".
Hmmmmm. Maybe Mrs. McStupid would volunteer to be
Infected by bb in a study. Highly unlikely.
Sometimes I think if you say the same things over and over
Again, you actually start to believe they are true.
Kind of like brain washing.
Grape Kool Aid anyone?
Thanks for posting TC. Even though it boils my blood
It just keeps reminding me of the blatant dismissal
Of our physical, mental, emotional and financial plight.
Hugs,
Geneal
Posted by Leelee (Member # 19112) on :
She has seriously flipped her wig! Posted by lymie_in_md (Member # 14197) on :
Some day, there will be a reckoning for such arrogant views, held by the IDSA -- especially for hotpants (I got to tell you TC -- love that depiction). It will go to court! I get the mental image of us all being locked in the bastille. And when the bastille was stormed, we all know what happened to Marie Antoinette.
Posted by lakes592 (Member # 18905) on :
Hot pants...I love it! Yes, let that be her official nickname. This letter is a sad reminder that a medical degree does not equal common sense!
Key word here being "Expensive." What does hot pants care how expensive it is? Is she paying for it? Does anyone ask how expensive it is to treat HIV or cancer? Peoples lives are at stake. Tell us hotpants what is the value you are willing to place on our lives??
Posted by polar blast (Member # 9142) on :
SORRY FOR THE CAPITALS i KNOW IT HURTS..THE DO NO HARM SHOULD BE CHANGED TO THIS...NOT RESPONDING AND TREATING IS THE SAME AS DOING TREMENDOUS DAMAGE AND HARM TO THE PATIENT..INACTION IS THE WORSE FORM OF DOCTOR ABUSE AND FRAUD..ALSO THE ABSENCE OF TEST RESULTS DOES NOT INDICATE THE ACTUAL INFECTION IS NOT THERE..THERE ARE TOO MANY BUGS AND VERY LITTLE TESTS..THAT IS MY OPINON..i FEEL THAT IT IS TIME FOR A GET TOGETHER AND RALLY..WE NEED TO STOP THESE IGNORINT DOCTORS..
Posted by Pinelady (Member # 18524) on :
Polar I like the way you think. Should we storm the
White House or the Capitol? Please make it on a day
all will be in office. You can count me in.
Posted by paulieinct (Member # 17514) on :
She's just another arrogant IDSA worm who HAAAAAAAAAAAAAATES suffering patients with a passion. She would have been a hoot at Auschwicz working alongside Mengele.
I believe there is study after study showing live spirochetes in tissue following abx treatment. My own submission to the IDSA panel quoted two of them. I know ILADS had a slew of them in the 500 lb. tome they submitted.
Methinks she and her fellow worms are getting nervous about the huge class-action lawsuit that will soon follow the revised guidelines. The worms will pay dearly with their own assets. I'll bet they're already hiding the stuff just like OJ did. Swiss bank accounts and a one-way to Argentina? Paraguay?
Posted by pryorka (Member # 13649) on :
Wonko, the reason they can't accept that fact is that they make too much money off it from insurance companies. Bribery is standard between IDSA and large companies with an interest in what they teach.
This excerpt I guess wasn't even convoluted enough by "ms hotpants" to make sense for her cause.
"The cost of this treatment must be borne by patients themselves, leading a discerning person to question the authors' interest in the real reason why they want the treatment guidelines changed."
Yeaaaah uhh the authors interest is having their illness treated just like any other illness. I think she was trying to make it sound like lyme support groups are making money when insurance companies pay for antibiotics?? We know it's the other way around, and the fact that she's writing this garbage now probably means she's already accepted her bribes.. uh I mean "consulting fees".
I like this one too...
"Blinded, randomized controlled trials show that long-term antibiotic treatment is not effective for any condition described as ``chronic Lyme'' - a condition that currently has no consistent diagnostic markers"
Notice the word... "trials" even though there was only one trial ever done and it was incomplete.
Wherever that article is posted there should be all those studies showing chronic lyme exists that metallicblu has posted right with it.
Posted by DJP (Member # 5893) on :
Her email is listed....... Should we send her the link on lymenet or other sites that have the obits of people who have died from this diease??
The statement ``at least 21 studies documenting death in patients with this potentially devastating tick-borne illness'' is patently wrong. Lyme disease is not a life-threatening disease. This statement is reminiscent of a tabloid headline - the patients may have had Lyme disease, and may have died, but not of Lyme disease.
No conflicts of interests?????????? Should we send her the link to the conflicts of interest document that lists the conflicts?
Should we send her the specific studies? Do you think she has even seen them? The IDSA Lyme disease guideline panel spent months scouring all of the Lyme disease research. Specific studies were not ``selectively ignored,'' but in fact stringently reviewed along with all of the other research
Posted by TerryK (Member # 8552) on :
ILADS doctors are in it for the money? Yeah, what doctor wouldn't want to be ostricized by their peers? Take numerous risks, some of which are lose their license spend years in court bankruptcy
Not to mention working with very difficult to treat, time consuming patients in a field that is constantly being maligned. Who wouldn't want to be constantly accused of being greedy at the expense of very ill patients while at the same time working themselves into the ground with backbreakingly long hours. GOOD TIMES!!!
I guess when she states that lyme disease is not life threatening she doesn't know how many commit suicide. There are many. Oh wait, there is no chronic lyme so she can say these people were just misguided completely ignoring that if they had been treated early on, they would never have progressed to the point where they were so sick they didn't want to live.
Sayiing that no one dies of lyme disease is like saying that diabetes is not life threatenting. People may have diabetes but they don't die of it. Right, they die of the complications of diabetes. Like kidney failure, heart attack, stroke and the list goes on and on.
It seems very clear that anyone reviewing the guidelines would be hard pressed to go against the tide if they want to be in good standing with their peers at the IDSA.
Terry
Posted by Starfall1969 (Member # 17353) on :
:Quote: Key word here being "Expensive." What does hot pants care how expensive it is? Is she paying for it? Does anyone ask how expensive it is to treat HIV or cancer? Peoples lives are at stake. Tell us hotpants what is the value you are willing to place on our lives?? :Quote:
Hmmm, let's see.
My mom spent 2 weeks in ICU after heart surgery, and that came to over $63,000, and that's just what my brother told me about.
So maybe we should be slamming heart doctors too.
Posted by lou (Member # 81) on :
And my brother-in-law just had a back operation that cost $150,000. I would call that expensive.
This kind of crap from the president of a professional medical society makes me think that not only can the IDSA not be trusted to get ANYTHING right, this casts doubt on all the other big name societies. They have been above the law for too long. Oh for some big bucks to sue those *******s.
WHY IS THIS NOT MEDICAL MALPRACTICE ON THE PART OF THE IDSA?
Posted by Kreynolds (Member # 15117) on :
Wow wish I could meet her in person....
Posted by bettyg (Member # 6147) on :
tincup,
i sent you a regular email, but knowing you get 200-300 emails daily... i'll reiterate it here now.
can strickler/lorraine johnson's letter they wrote be pasted here for all of us to read WHY this woman went mental on us all?
OR could their letter be posted on CALDA site in its entirety so we could all read it?
phyllis mervine, if you read this, would you ask lorraine since you have regular contact with her? big thanks!
they really lit a fuse under her asset....
Posted by adamm (Member # 11910) on :
Not only a worthless human being, but a terrible writer as well.
Posted by LisaS (Member # 10581) on :
quote: Among the many inaccuracies in this article, the most egregious charge is that the IDSA's Lyme disease guidelines ``excluded most Lyme patients and denied them treatment for their illness.''
Does she not know about all the Drs. getting arrested or investigated for treating us?
Posted by TerryK (Member # 8552) on :
Not only does the IDSA know but some of their members are responsible for it in some cases.
She absolutely knows. Her letter is disingenuous to say the least.
Terry
Posted by Melanie Reber (Member # 3707) on :
My submission to the IDSA included 12 pages of (small font) fatality citations.
PEER REVIEWED, PUBLISHED studies and abstracts proving death due to tickborne diseases.
Some 'people' will only hear what they want to hear. ~sigh~
"Data over dogma, Evidence over egos, Patients over politics." - Dr. Ed Masters Posted by Zebco 33 (Member # 18376) on :
Pinelady~ We've been trying to get together.
What a good way to meet. We will storm the White House and the Capitol with our Fishing Rods and our favorite Lures!!!!!!!
Lyme Rage is nothing to fool with!!
Outragous! Yet, not surprising. AAARGGHH!
Posted by Tincup (Member # 5829) on :
Melanie said ... "My submission to the IDSA included 12 pages of (small font) fatality citations."
I am now even more happy you did all that work and submitted it. Thank you!
It is going to be hard for them to sing that tune they are singing when they see your work.
As soon as I saw this letter from hot pants.. after I finished laughing.... I thought MAYBE she read some of the IDSA submissions everyone made to the panel.
The submissions went TO the IDSA ... so she would have possibly had access to them (I assume she would have access).
I can't imagine anyone getting so bent out of shape over just ONE article.
If this IS the case... and hot pants can't take the heat...
She might want to get out of the kitchen!
Actually, I CAN imagine hot pants getting this bent out of shape.
I've seen some of the others over the years when they were just questioned about something.
NOT pretty!
Spitting, stuttering, flustered, red-in-the-face, "evil-eyes", scowling, screaming LOUD, bossy, degrading, wringing their hands, jumping out of their seat, slamming their fist on the table, nasty, etc...
Actually.... now that I think about it, I've known a lot of them over the years. And right now I don't recall any of them being very mannerly or level headed ... OR... and even more importantly...
Helpful or right.
And I've heard from others about incidents that were shameful... like at the Baltimore Sun... when a couple of them (IDSA supporters) went in and bullied the Sun to give THEM newspaper space to refute what others said because they didn't like it.
Boo-hoooooooo-hoooooooo.
`````````````````````````````````````````````````
BG- I'll ask for a copy of the article.... but don't know if it can be shared??? If so ... will do.
``````````````````````````````````````````
Lymie-in-MD and Lakes...
So you like the name Hot Pants?
GOOD! Then she now has a name we CAN use on the board!
You've dubbed her Hot Pants, sooooooo..
Hot Pants it is!
Feels like we are picking names for pets here, not someone who is suppose to have a developed brain.
As far as all the "vague" symptoms of lyme, she can have any and all of mine. If they are so vague, I'm sure she can handle 'em.
Posted by bettyg (Member # 6147) on :
tc,
shoot, i just read one of your other posts about all of this, and just emailed lorraine johnson at the email shown.
we'll see, but THANKS for trying so we can see what HOT PANTS is squeaking about this time!!
Posted by bettyg (Member # 6147) on :
i read your initial post as i was logging off in the wee am hours.
whereever this post was, can we lyme patients write rebuttals to the newspaper?
just like melanie reber said, she wrote 12 pages and had citations galore on this kinds of stuff.
Posted by Pinelady (Member # 18524) on :
HEY-Can we hire Dr. Cal Lightman from LIE TO ME? To
represent us?
Posted by Mo (Member # 2863) on :
how ludicrous it is that the idsa spends so much time taking a stand against the specifics of chronic lyme treatment.. yet offers NO TREATMENT of it themselves.
"the IDSA chose the panel of experts that we believe is the most knowledgeable for the job" yea, all the ones that claim that this illness condition basically doesn't exist.
they can simply state that -- so therefore so many so ill need NO CARE?
it boggles my mind in a very fundamental way.
ok, anne ~ ~ "longterm antibiotics are unproven, unsafe, blah, blah, blah.."
so WHAT is your recommended course of action?
several other infectious diseases are treated with long term anti-microbials/anti-virals.. based on continued clinical symptoms.
they claim they "scoured the research base" yet at least these two statements are completely baseless:
1.long term antibiotics don't work on TBD's and 2.TBD's cannot become chronic (except in vary rare cases where one would detect it in serology or spinal fluid. um..hello - spinal fluid is documented to have less than ten percent yeild, and we all know the research data on available tests)
there is no proof for either of the above statements, no research base whatsoever.
how in the world can any science-based organization get away with making baseless claims? they may as well be publishing fairy tales.
i also noticed that miss g. spends an awful lot of time in this article defending against the idsa's known financial ties to those who benefit enormously and directly from these fictional guidelines.
mo
Posted by JesseSapp (Member # 16630) on :
Why?
Why would a group of very intelligent, articulate physicians who have dedicated their lives to saving lives (not by treating Lyme Disease but other infectious diseases like HIV/AIDS, TB, nec fac, pneumonia, meningitis) puposely ignore evidence and lie to the American public?
Why?
That is the one question nobody can answer. It is the first question a "normal" person asks when someone with Lyme Disease says that "the IDSA is corrupt".
Why?
I haven't heard anybody give me a good answer. So, in the end I am left believing that this group of physicians truly believes that they are correct. They have analyzed the evidence to date and have come to an informed decision to back up their position. Perhaps this will change in the future as more research is done...perhaps not.
Can anyone offer me a better reason?
Posted by Need Lots of Help (Member # 18603) on :
I think if the ISDA truly thought they were right, and they believe there is no such thing as chronic lyme disease, they would try to prove or name what we "do have" in order to prove that they are right.
Shalome
Posted by paulieinct (Member # 17514) on :
They ignored evidence the first time around because of the conflicts of interest. They got caught. Now they're between a rock and a very hard place. As the evidence becomes more and more compelling on our side, does anybody really expect them to say, "We were wrong. Sorry about that." Of course not.
Self-preservation kicks in, they know they can't admit to error, because it will be an admission that they have caused enormous suffering on a global scale. They will then be culpable, and will be sued by millions.
The new panel looking at all the evidence knows the world is watching. Their review will be scrutinized intensely. They see themselves in a lose/lose situation. Admit the guidelines were flawed, and invite the lawsuits. Ignore the evidence again, invite global condemnation, and more lawsuits.
Notice how IDSA is now saying the guidelines were just "suggestions". HA!
It all boils down to this: has the Bb organism been found to persist in the body after a round of antibiotic treatment? If the answer is YES, you must continue to TREAT until the infection is GONE. The issue of whether long-term treatment has been shown to be EFFECTIVE or not becomes in a way irrelevant, because doctors can NEVER stop treating a dangerous active infection, no matter how hopeless, WITHOUT VIOLATING THE HIPPOCRATIC OATH.
I'm certainly not saying that chronic Lyme is hopeless, but even if it were, doctors are duty-bound to KEEP TRYING.
Posted by Tincup (Member # 5829) on :
"Can anyone offer me a better reason?"
A billion reasons...
$$$$$$$$$$$$$$$$$$$$$$$$$$$
Research funding, past and future billions...
$$$$$$$$$$$$$$$$$$$$$$$$$$$
Patents....
$$$$$$$$$$$$$$$$$$$$$$$$$$$
Ties to drug and insurance industries...
$$$$$$$$$$$$$$$$$$$$$$$$$$$
Vaccines...
$$$$$$$$$$$$$$$$$$$$$$$$$$$
Pride...
$$$$$$$$$$$$$$$$$$$$$$$$$$$
Reputations...
$$$$$$$$$$$$$$$$$$$$$$$$$$$
And the fact they think they are God...
Priceless.
````````````````````````````````````````````````
BTW- Do you know the difference between a doctor and God?
God knows he's not a doctor.
Posted by TerryK (Member # 8552) on :
Jesse asks: Can anyone offer me a better reason?
The reasons are complex and there are many. TC hit on most. For a detailed history of the controversy, read the book "Cure Unknown". You won't be sorry. It is an amazing book that gives much insight.
Terry
Posted by JesseSapp (Member # 16630) on :
quote:Originally posted by Tincup: "Can anyone offer me a better reason?"
A billion reasons...
$$$$$$$$$$$$$$$$$$$$$$$$$$$
Research funding, past and future billions...
$$$$$$$$$$$$$$$$$$$$$$$$$$$
Patents....
$$$$$$$$$$$$$$$$$$$$$$$$$$$
Ties to drug and insurance industries...
$$$$$$$$$$$$$$$$$$$$$$$$$$$
Vaccines...
$$$$$$$$$$$$$$$$$$$$$$$$$$$
Pride...
$$$$$$$$$$$$$$$$$$$$$$$$$$$
Reputations...
$$$$$$$$$$$$$$$$$$$$$$$$$$$
And the fact they think they are God...
Priceless.
````````````````````````````````````````````````
BTW- Do you know the difference between a doctor and God?
God knows he's not a doctor.
Responses like this are one of the biggest reasons why I have a love/hate relationship with this website. I'm a physician. I became one before becoming ill. So, I know what it's like to sit in a colleagues office and hear "I don't know what's wrong with you, but I don't think it's lyme disease". And, you know what...the 10 or so doctors that have told me that aren't rich people...they aren't getting some kickback from the insurance companies or from the IDSA...they just don't believe lyme disease is causing my symptoms!
Blanket statements like you make aren't true, and I think contribute to the stigma that physicians have towards chronic lyme patients. I can guarantee you that the members of the IDSA committee are not extremely wealthy people. They might be making a decent living, but certainly are not making millions of dollars per year. As much as you would like to dismiss doctors, people become physicians to help people...not make money! I graduated from a ivy league school. I had friends who made $1 million on wall street their first year out of college. I went to 4 years of medical school, graduated with $220,000 in loans, then spent 4 years in residency, earning $35,000/year and working 110 hours a week.
So, you can respectfully disagree with someone's professional experience or views, but making personal slanderous attacks which have no merit but simply serve to generate and foster negative attitudes towards people (who have no chance to defend themselves) is unfair. I read so many things on this board that are so obviously medically false that it makes me horrified.
I'm slowly getting better. I have no ill will towards those who didn't diagnose me earlier, because they were not bad people. They were doing the best they can - trying their best to help - and just didn't know any better.
Posted by Mo (Member # 2863) on :
i really need to read that book, btw. i've been in the eye of the storm too long to do it. living the experience..
quoting paul:
The issue of whether long-term treatment has been shown to be EFFECTIVE or not becomes in a way irrelevant, because doctors can NEVER stop treating a dangerous active infection, no matter how hopeless, WITHOUT VIOLATING THE HIPPOCRATIC OATH.
all i can say is....word.
regarding the idsa, to me, the why's are more than appahrent as outlined above.. it's ~ how could they get away with it ~ that i get stuck on.
there must be intent here, it's a burgeoning infectious disease that, certainly, is in the spotlight.
these guys are the infectious disease experts. they have clearly had a responsibility and more than ample opportunity to proove their beliefs.
being that they are the utmost medical authority, their "suggestions" effect millions of patients lives and access to appropriate care.
those who authored these guidelines and their close colleagues are at the core. certainly many doctors are making honest mistakes, or in fear for their license.
physician's consequences for not following the guidelines are real, financially and legally.
mo
Posted by bettyg (Member # 6147) on :
hi jesse,
thx for sharing your feeling as a dr. and ALSO AS A LYME PATIENT; so you know both angles of what is happening.
yes, you are probably right; drs.in your league are NOT those that tincup was referring to in her "blanket" statement.
they were directed at those on the idsa lyme treatment guidelines panel who DECIDED OUR FATE and who have CONFLICTS OF INTEREST:
wormser, steere, ....
dog gone it, my neuro lyme fog took hold took hold again, and the other 3-4 names i've not forgotten!!! don't you hate that when it happens so frequently especially for me!
those are the drs. we dislike for what they have knowingly have done to us which is documented in THE BAKER'S DOZEN...lunatic fringe by PJ LANGHOFF, 09, all about IDSA and over 1,000 links rebutting their statements they have made!!
please get it to educate yourself more on our lyme war.
are you an IDSA DR? what's your specialty?
did you know that lyme mimics over 300 other diseases BEFORE you were diagnosed?
anyway, thanks for adding your 2 cents to this post as well.
there are many wonderful drs; unfortunately, we've had more than our share of the other kind.
39 yrs. chronic lyme 34.5 yrs. MISDIAGNOSED BY 40-50 DRS!
Posted by Leelee (Member # 19112) on :
quote:Originally posted by Mo:
regarding the idsa, to me, the why's are more than appahrent as outlined above.. it's ~ how could they get away with it ~ that i get stuck on.
I wonder the same thing every day. We know why the IDSA does it, but how they get away with it is a huge question in my mind. Posted by Pinelady (Member # 18524) on :
JSapp all we are saying is that the IDSA has had
since the first guidelines were introduced to now
to change things because of the research of Bb
worldwide and has chose not to. It took them
longer to change the findings for HIV. To say
yes, it is in the blood, to say yes it is
genetically transmissible. It did not take the
American Revolution that long! I think the
question in most minds is why has nothing
changed? If they chose to ignore patients pleas
for help because they do not know how to treat
or how to diagnose who's lap does that fall on?
The doctors, who could look up the latest
research for themselves? The Government who could
change the IDSA? The people who are sick and
don't know why? The Boards of Medicine who are
supposed to be teaching our practitioners? I am
glad you are here to help us and can provide
another point of view to balance the scales. For
every doctor they teach that Bb is cured in 2
weeks is possibly 10 years of suffering for those Bb
patients who just happens to go see him for help.
Posted by Tincup (Member # 5829) on :
JS said.... "Blanket statements like you make aren't true..."
Actually I have proof they are true. Can you counter them with something other than a "feeling"? If so, please do.
And if this is what you really believe, you might want to express your opinions to the Attorney General who found the IDSA guilty of all sorts of conflicts of interest, anti-trust, etc.... regarding the same things I listed above, after a long investigation.
So this isn't just "my opinion". This opinion was expressed by a top legal team (and others) and the results of the IDSA corruption are seen here every day.
```````````````````````````````````````````````
"... and I think contribute to the stigma that physicians have towards chronic lyme patients."
I believe the stigma, if there is any outside the IDSA, comes from the mouths of and is promoted by those who were accused and found guilty. I've only seen the IDSA supporters state or support these types of views.
Check out the IDSA's new Lyme disease physician training course.. which they advertise as being based on THEIR Lyme guidelines ... AFTER they were found guilty of many wrong doings.
And they have been involved in physician training for years... bad begets bad.
If they were sincere.... they would accept feed-back from patients on how the guidelines are working out for them... or even from the physicians who know Lyme and who are treating them.
This information has been offered to them repeatedly... like Lyme Ed's excellent references, cases studies, trials, letters, charts of patients, etc...
And they not only ignore it, they ridicule it and try to hide it.
````````````````````````````````````````````````
"I can guarantee you that the members of the IDSA committee are not extremely wealthy people. They might be making a decent living, but certainly are not making millions of dollars per year."
Show me the proof, if you will, that your statement is true.... please.
Be sure to check their schools also. They have to bring in research dollars for them and their programs to keep afloat.
And then ask yourself after going to Congress to beg for money.... LOTS and LOTS of money.... and this is only ONE of several and only ONE year's worth.....
Why they are so strongly opposing a Lyme disease bill that would allot $100 million for Lyme disease research (HR 1179)?
If you aren't familiar with the Lyme bill, the research monies main goal is to find an accurate test... which I think 100% of the folks on this board would wish there was one .. as well as the doctor's who treat them and even those who don't treat but wish they could....
As well as those who may be exposed to Lyme in the future. I'd think they would want to have an accurate test when they are sitting in the hot seat looking for answers.
Of course the discovery of an accurate test would then compete for dollars (on the market) with the tests the IDSA supporters have patents on.
Not to mention, continue to prove them and their theories wrong.
"So, you can respectfully disagree with someone's professional experience or views, but making personal slanderous attacks which have no merit but simply serve to generate and foster negative attitudes towards people (who have no chance to defend themselves) is unfair."
With all due respect... boo hoo on my unfair behavior.
Come to the graveside with me and tell those who can't speak for themselves now and who suffered because of the IDSA that sad story.
And actually, my comments do have merit... and I'm not the only one who knows this to be so.
If you think the IDSA doesn't have a chance to defend themselves.... have you, for example, checked out Hot Pants latest letter to the medical journal?
Or the NEJM's Critical Appraisal of Chronic Lyme Disease article?
Or McStupid's garbage?
They are "must reads" to get a better understanding of what we are dealing with... and the attitude they have toward Lyme and patients. And there are hundreds (if not thousands) of more references to consider too... over a 30 year period.
Keep in mind... the NEJM article was published by some of the IDSA Lyme Guidelines authors and supporters.. as an attempt to make themselves look credible and to make it look as if they had something to back up their guideline views...
And at about the same time, the IDSA panel members were one in the same as those on the "independent" Neurology Lyme Guidelines panel that they both tried to pass off as independent guidelines to try to boost their position.
I appreciate your right to express your views, I just don't agree with them.
I think they are based on your personal experience with your case only and not what is typically noted by numerous others.
Posted by lakes592 (Member # 18905) on :
Well said Tincup as usual. Jesse if you haven't seen the movie "Under our Skin," please do. It shows the whole picture very clearly.
I've gotten to the point now where when people ask me why? I don't even want to respond. I am done focusing on the why. I'm done focusing on things I can't change.
I am trying to focus on things I can change (education, awareness,talking to schools, the state, Doctors, nurses,calling on bills like HR1179,letter writing ect.)
Jesse you are a physician and can do great things in helping with the above mentioned problems that we face. We are fighting for our lives, our children's lives, those who have lost their lives and the lives of people that become infected in the future.
Instead of asking why did this happen? Let's ask how can I change it?
" Lyme disease is growing at four times the rate of AIDS and is quickly becoming our nation's most misdiagnosed and fastest-growing infectious disease. People are becoming permanently disabled, even dying. Educating the public and physicians regarding the disease and the progression of treatment is essential."
Jesse Honey, I can remember as a child, doctors made house calls. They had the compassion to realize the burden it would be on the sick to get to their office.
We put doctors on a pedestal,because they belonged there, they even put patients before family.Real dedication and compassion. It WAS the American way, neighbors helping neighbors, and even strangers.So we trusted them heart and soul.
Insurance companies come along and take those practices away, from the doctors who only have ten minutes to "listen", from patients feeling the doctor is not listening, seeing or caring, push them through like an assembly line.
Then the IDSA comes along and in addition to all of the above posts, gets state Medical boards to investigate any doctor that has a red flag up on reporting or treating Lyme Disease,
Charges are usually unfounded, but it leaves the doctor bankrupt, and his reputation destroyed.
In my state, if you mention Lyme to a doctor, you can see the fear. They get nervous, ridicule you, and rush out. Now if you tell them you are taking antibiotics for Bartonella, there is no problem. They have no idea what it is.
I guess what I am angry about is that at the age of 55, I have to grow up to see that our country is not a country for the people any more.
It is a country for corporations.So Tincup is correct.
I have no respect or trust in doctors any more, because they have no guts. They put self first. I have taken packets of Lyme research to doctors, only yo have it returned un read. They dont want to know the truth.
Dont count me naive, I graduated at the top of my BSN class, and my family has been in the medical field since the 1830's.
I still do have a heart Jesse, and I hope with all my heart that you can learn from your role as patient.
I know you have a good heart too, so always remember to use your heart and gut instincts when you first walk into your patients room.This will help you to be the best doctor you can be, and will set you apart from the rest.
I also believe your patients just may be more compliant if you give them respect.
I wish you luck in your profession. It sure is up to you what kind of doctor you will become. I hope you choose not to fit yourself in the mold.
Posted by adamm (Member # 11910) on :
lyme-rage.info
A biowarfare holocaust
Posted by Kathryn (Member # 17034) on :
Here's her contact information at Columbia University in case anyone else wants to contact her directly....
Anne Gershon, MD 630 West 168th Street PH4-468 New York, NY 10032 Tel: (212) 305-9445 Fax: (212) 342-1578 E mail: [email protected]
She claims to be a Lyme expert, but only seems to have recently published papers about the varicella-zoster virus.
medicine(big pharma). While in reality he is no better off here
except he can get his research confirmed. He
reported his finding had them confirmed and was run
out of his own country.
Posted by TerryK (Member # 8552) on :
Jesse, The medical profession is just like every other profession. There are those who are honorable, caring and above board and there are those who are greedy, dishonest and in it for the money, prestige or both.
As far as salary, doctors right out of medical school don't make much money. That is true for many professions. I can assure you that my family member who is a doctor makes many times over $35,000 a year as do most doctors who have been in the profession for very long.
We have no way of knowing what the doctors who were the authors of the IDSA guidelines make per year or where those $$ come from.
I agree, many doctors are following the lead of the IDSA and don't know the truth. They trust the supposed experts.
You can bet that many of the authors of the IDSA guidelines know the truth. Read the book. They have seen the evidence. The CDC has ample evidence that borrelia persists even after extensive antibiotic treatment.
Look at the studies. There is clearly sufficient evidence to show persistent infection after "adequate" treatment.
If they don't absolutely know the answers, why not err on the side of the patient? There are plenty of diseases that require long term antibiotic treatment. I'm pretty sure if they themselves had chronic lyme disease, they would take the risk of long term antibiotics rather than live the life of most chronic lyme disease patients who have been denied treatment.
Living with chronic, untreated lyme disease can be a horrible existence. Far from the conclusion of the IDSA 2006 guideline panel that persistent lyme disease symptoms are nothing more than the ``aches and pains of daily living''. http://www.ilads.org/news/top_lyme_news/20.html
Does it seem appropriate that they kick collegues off the panel who do not agree with them?
Again, I urge you to read "Cure Unknown" for a better understanding of the issues and history.
Terry
Posted by Shosty (Member # 12232) on :
I think that quite a few of the doctors are quite sincere in their opposition to chronic Lyme as a diagnosis, and concern about antibiotics over the long-term. That doesn't mean that I think they are always respectful, nice, or open-minded, but they do really believe that long-term treatment is harmful and, in some respects, that is true.
I do wish that all of us Lyme patients could work on being a little more "professional" in the ways in which we express our opinions. We could be much more credible and effective. I have been to hearings where I cringe at the style and content of some of our Lyme advocacy.
My family deals with a few other chronic illnesses, and the advocacy for them is quite different, and more effective.
In the "Lyme wars," opinions are very polarized. While we want the opposition to move more to "our side," it would help if we could all move a bit toward theirs. No progress is going to happen until there is some meeting in the middle, somehow. As a start, we could consider the possibilities of autoimmunity playing a role in chronic Lyme for at least some of us. Not necessarily in the way that Steere writes about, but some of the opposition's ideas do have some merit.
Also, many of us who have been around for a few years, are questioning the role of long-term antibiotics (meaing years and years) and are turning to alternatives.
Reasonable people consider all options and opinions. Maybe if we show a little open-mindedness, the other side will too.
[ 05-25-2009, 11:46 PM: Message edited by: Shosty ]
Posted by bettyg (Member # 6147) on :
to all,
buy or have your library get an intra-agency loan of the newest lyme book out
THE BAKER'S DOZEN...LUNATIC FRINGE, JUNK SCIENCE PARADIGMS..someting like that for the ending.
by PJ LANGHOFF. 09, ALL ABOUT IDSA with over 1000 links of rebuttal info of their quoting one thing and saying another.
i'm not done with EITHER book; pj's is 535 pages with the MOST info packed into every page in a smaller print even.
you'll learn things you never knew before plus...
Posted by ping (Member # 6974) on :
Hmmm...She sounds mad AND scared ...We must be making progress.
ping "We are more than containers for Lyme"
Posted by s0ngbird1962 (Member # 16395) on :
"...subsequently have ongoing, vague symptoms, we are concerned these patients likely are suffering from a different or new illness and are receiving potentially dangerous ``treatment'' rather than being evaluated, properly diagnosed, and treated appropriately."
Vague symptoms are my 6 yr old son losing his vision, abdominal pain/vomiting, joint pain, learning disabilities as vague? Would she say that if it were her son?
We have tried for almost 3 years to be properly evaluated/diagnosed/treated within their guidelines despite a very classic case of lyme that was misdiagnosed. We were FORCED to seek help elsewhere.
Their oath to "Above all, do no harm" has harmed my son. I don't believe that oath to "do no harm" means "do nothing."
I'm scared about the road we've been forced to take with my son, but really, with ignorance like this author/IDSA what choice do we have?
[ 05-26-2009, 08:31 PM: Message edited by: s0ngbird1962 ]
Posted by ping (Member # 6974) on :
[QUOTE]Originally posted by bettyg: [QB] hi jesse, yes, you are probably right; drs.in your league are NOT those that tincup was referring to in her "blanket" statement.
they were directed at those on the idsa lyme treatment guidelines panel who DECIDED OUR FATE and who have CONFLICTS OF INTEREST:
wormser, steere, ....
Hi bettyg - I believe a couple of the names you're looking for are : Bum-Steere, Worm & Spliced-Gene (Shapiro).
Jesse: Watch the documentary, then try to convince yourself that these IDSA docs aren't as crooked as my back.
ping "We are more than containers for Lyme"
Posted by bettyg (Member # 6147) on :
ping, yep, those were the names i was trying to think of... thanks for the assist hug
Posted by JRWagner (Member # 3229) on :
*&&%$$!!!!!##&***!!!
Sorry, I just had to say it... This Dumbtor (dumb Doctor)works at COLUMBIA???? WHAT???? Am I missing something here? Dr. F heads up a Lyme Disease group at Columbia!!!! WHY THE DISCONNECT WITHIN COLUMBIA??? WTF????!!!!!!!!!!!!!!!!!!!!!!
Why the silence from the Lyme people at Columbia?
Why the Myopic view taken by this ****&&*, and not the enlightened view offered by the Lyme people at THE SAME INSTITUTION???
Let me ask the bad lady this: Why didn't the ABX (the obligatory Doxy) work for me, even though I caught the disease early (MAY 1994)? Why would the symptoms continue to get worse, culminating with a "SEVERE HYPOPERFUSION" brain SPECT scan done at COLUMBIA,(first scan done in 1995 was normal) and after clean spinal taps in 1995 and 2000, would I then have a wonderful surprise result from a 2005 Spinal Tap done at the MS Research Center at Cornell, showing OLIGOCLONAL ANTIBODIES??? Why would my Lyme WBs continue to be CDC positive in both parts (IgG and OgM)???
Why would I, and many of my Lyme buddies, try to stop ABX, only to slide downhill rapidly?
Why would we be tested for ANY OTHER DISEASE/CONDITION and have negative results...EXCEPT FOR LYME???
Why can't these fools understand that Spirochetes are incredibly complex and posses "intelligence" like no other bacteria?
DAMN!!!! As another asked, what is the IDSA's solution to our "Vague" (what a freakin' joke that word is...) symptoms.
Criticize if they must, but what happened to the "CONSTRUCTIVE" part of their argument? ZILCH...
THEY HAVE NO ANSWERS...JUST VAGUE ARGUMENTS...the word "vague" now works in OUR favor.
TINNY, TOOTS, BG,Mo, Melanie, etc., THANKS for this! I just LOVE powerful women!!!!!
Now, when do we want to storm the barricades? AND...have some chocolate?
Peace, Love, and Wellness, JRW
Posted by Tincup (Member # 5829) on :
"Now, when do we want to storm the barricades? AND...have some chocolate?"
I have a watch. It is always working.
It doesn't have hands or a battery. It doesn't need them.
It just says "NOW".
And I think THAT is always a good time to have chocolate!
![[lol]](graemlins/lol.gif)
![[Big Grin]](biggrin.gif)
![[toilet]](graemlins/toilet.gif)
![[tsk]](graemlins/tsk.gif)
![[puke]](graemlins/puke.gif)
![[cussing]](graemlins/cussing.gif)
![[sleepy]](graemlins/sleepy.gif)
![[Roll Eyes]](rolleyes.gif)
![[group hug]](graemlins/grouphug.gif)
![[kiss]](graemlins/kissing.gif)
so we can see what HOT PANTS is squeaking about this time!!
![[shake]](graemlins/shake.gif)
![[Eek!]](eek.gif)
...We must be making progress.![[Smile]](smile.gif)
hug