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» LymeNet Flash » Questions and Discussion » General Support » What Pamela Weintraub told the IOM panel

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Author Topic: What Pamela Weintraub told the IOM panel
rks
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I could not find her speech on the videos at IOM's website, so I thought I'd post it here for others who may be interested.

I hope I broke it up enough for everyone.

http://www.lymedisease.org/news/lyme_disease_views/592.html

Pamela Weintraub's stirring speech at the Institute of Medicine's state-of-the-science Lyme workshop on October 11 brought a standing ovation from the audience, and spirited discussion from panelists. Read the text of her remarks here.

Institute of Medicine Talk on The Human Face of Tick-Borne Diseaseby Pamela Weintraub

Lyme disease entered my life in 1993, when my husband Mark, our two sons, and I moved to Westchester County, New York. At the time I was, as I am now, a science journalist specializing in biomedicine for the national consumer press. Our lovely property in the hamlet of Chappaqua abutted a spruce forest, and we reveled in our new contact with nature--there were deer, squirrels, raccoons, mice and all sorts of other animals and birds.

From that point on, we all became increasingly sick. First there were headaches, joint pains, and an inexplicable weariness. With time, the symptoms intensified and multiplied: My knees became so painful that I had to sit down to descend the stairs in my house on my bottom, one step at a time. I developed dysphagia: I had so much trouble swallowing that I literally choked on my food. I developed peripheral radioneuropathy:

My arms and legs buzzed, gently at first, and then increasingly painfully until it felt like electricity was running through me. The headaches became relentless. My eyes were painfully sensitive to light. I spent hours each day in a darkened room, in bed.

Meanwhile my husband, Mark, an avid tennis player, began stumbling and bumping into walls. He was an award-winning journalist, but he began struggling with memory and groping for words. Increasingly cognitively impaired, he was forced to leave his job after realizing that he`d spent hours trying to read a single, simple paragraph.

Our youngest son, David, began to sleep--first so long that he could not do his homework or see his friends; eventually, so much that he could not get to class. In the end he was sleeping 15 hours a day.

Hardest hit was Jason, our oldest, who suffered profound fatigue and shooting pains starting at age nine, late in the summer of `93. The doctors called these ―growing pains‖ normal, and my son, though often fatigued, tried to keep going. Then in 1998, he developed a huge erythema migrans rash over his torso.

I called the doctor's office and was told not to bring him in--since it wasn't in the shape of a bull's eye, it wasn't Lyme, they said. After that rash, Jason became increasingly ill, and never seemed to get well. By 2000, at age 16, he was functionally disabled. He couldn`t think, walk, or tolerate sound and light. On medical leave from high school, he spent his days in the tub in our darkened main-floor bathroom, drifting in a mental fog while hot water and steam eased his pain.

As his condition worsened, as all sorts of lab tests came back negative, a raft of specialists at New York City`s top teaching hospitals suggested diagnoses from migraine aura to parvovirus. Each diagnosis elicited a treatment, but none of them worked.

``What about Lyme disease?'' I asked from time to time.

``There are too many symptoms here and he`s way too sick for Lyme disease,'' responded the pediatrician, who told us he felt it was all psychological. Thankfully the psychiatrist we ultimately consulted -an academic scientist who literally wrote the book on child and adolescent psychiatry--disagreed. At his insistence, the pediatrician drew fourteen vials of blood, testing for hormone imbalance, mineral deficiency, anemia, and a host of infections, including one tick-borne disease -- Lyme.

A week later he called to tell us that just one test, a Lyme Western blot from Labcorp, had come back positive, with eight of ten bands highly lit.

Finally the head of infectious disease at Northern Westchester Hospital weighed in: In retrospect, he said, Jason had probably been misdiagnosed for years. I will never forget the way he phrased his grudging diagnosis: ``I`ll give it to you,'' he said, as if we had earned some coveted prize that others, whose confusing arrays of multi-system ailments could be explained in some other way, would never get.

Unaware of the political turmoil over tick-borne disease, I didn`t yet understand how rare it was for a doctor like him to diagnose late-stage Lyme disease in New York State. Jason was treated with eight weeks of intravenous Rocephin, but when he didn`t get well, the Lyme diagnosis was revoked, and that doctor, too, consigned him back to psychiatry.

The situation would stretch any one's credulity: Our formerly straight-A, basketball-playing son, after contracting Lyme disease, being misdiagnosed for years, and finally receiving antibiotic therapy for two months, had now developed a bizarre, unrelated psychiatric disorder whose symptoms were, coincidentally, exactly the same as those of Lyme disease.

Perhaps it is possible to believe this kind of explanation when served up by experts talking about other people`s children; but it is the rare parent who would accept this decree for a child of his or her own --especially when your psychiatrist has never seen a psychiatric disease like this in his life.

My husband Mark and I, by now both quite ill now ourselves, faced a choice: Accept this unlikely story and give up on our son`s future, or find one of the Lyme doctors said to treat more aggressively, in opposition to the mainstream views we had followed for years to the current, tragic state of affairs.

So in the summer of 2000 we bundled our boy into the car and headed up to New Haven, and the practice of the embattled pediatrician, Charles Ray Jones. Dr. Jones examined and tested Jason and told us he was so sick because he had contracted not only Lyme disease, but two common co-infections that ticks carry --babesiosis and anaplasmosis. Epidemiologically, it seemed like a reasonable call, given the many vacations we'd taken on Martha`s Vineyard and Cape Cod, where babesia was rife.

Dr. Jones treated Jason with standard doses of doxycycline for anaplasma and Lyme disease, and with mepron and zithromax for babesia. Two weeks later -after years of freefall--our son got out of the bathtub and began throwing a basketball around the family room. Two years later he was playing varsity basketball for his high school, and today he is a graduate of Brown University and earning his MFA in film.

Although my book, Cure Unknown, is in part a memoir, its focus is really what I found after I had dealt with my family's health problems sufficiently for me to sit back and peer through the eyes of the investigative and skeptical science journalist I had been for decades before Lyme swept us away.

For almost eight years, from 2000 to 2008, I interviewed patients, the Lyme doctors treating the sickest of them, and dozens of academic scientists, including most of those at the forefront of research and many speaking at this forum. My journey as a patient was contextualized by all this research, and often confirmed. For instance, I met large numbers of patients with classic, incontrovertible presentations of Lyme disease who, like Jason, would probably have been cured with early treatment, but who were instead diagnosed late, often very late, in the game.

Routinely, patients that I interviewed reported going to their primary care doctors with the tick in hand and being told to throw the tick away and return only if symptoms emerged. Many patients told me of doctors who insisted a Lyme rash had to look like a literal bull`s eye. Patients reported going to doctors with a tick bite, early flu like symptoms, and sometimes even an erythema migrans rash, and being told to wait for a positive test before they could be treated.

When patients tested positive, a significant percent were told they could still not be treated for Lyme disease until they developed gross objective disease signs like swollen knees or inflamed nerves--in other words, until they had advanced into the late stage of disease, when treatment was more likely to fail.

Other patients with known exposure and signs and symptoms of Lyme disease failed to test CDC positive on their Western blots. Take me: I had a positive ELISA and four CDC positive bands plus two additional Borrelia burgdorferi proteins, outer surface proteins A and B. Six bands in all, and the lab was Stony Brook. Still, I had to step outside the bounds of the medical mainstream to find a practitioner who recognized this alternate band pattern as Lyme disease.

Patients in the South could have the trademark rash and objective disease signs --but they would be told there was no Lyme or clinically comparable Lymelike disease in their state, and be turned away.

Such patients, in aggregate, constitute what I think of as the chronic Lyme population: They had bona fide Lyme disease that would have been cured with early treatment. Instead of getting that treatment, they were diagnosed months or years too late. They were eventually treated for late stage Lyme disease in accordance with the Guidelines of the Infectious Diseases Society of America. And they failed the treatment.

Completing the community of patients covered by the meeting today are the coinfected--those with babesiosis, anaplasmosis, ehrlichiosis, or some other tick-borne infection. If you look at tick surveys from around the United States these diseases in ticks are widely reported, and they are well-known as human diseases, yet primary care physicians almost never consider or test for them, if indeed the possibility of Lyme itself is seriously considered.

I think a real effort needs to be made to determine the whole suite of possible diseases patients with Lyme may be carrying--because having an unknowable, undiagnosable illness can be very much part of the patient experience on the ground. Patients like Jason can be very sick, and their disease can be refractory specifically because it isn`t just Lyme disease.

As a group, these patients can be very ill. Mark Klempner of Boston University reports his cohort of chronic Lyme patients was as impaired as those with congestive heart failure or osteoarthritis and more impaired than those with type 2 diabetes or a recent myocardial infarction. Brian Fallon of Columbia reports pain equivalent to post-surgical pain and fatigue as severe as that seen in M.S. Patients can suffer stabbing, boring, shooting pains in their arms and legs, or impaired vision and hearing from damaged nerves. They can suffer heart damage.

Even more devastating, especially to students and knowledge workers, are the cognitive and memory deficits. Testing hundreds of such patients, New York University neuropsychologist Leo Shea found specific deficits in concentration, short-term memory and processing speed. Fallon has objectified these impairments by tracing them to blood flow and metabolism deficits in the brain. Some scientists have called the impact of these impairments mild, but that does not remotely capture the experience for the patient herself --the angst of falling behind in school or feeling perpetually foggy and confused.

Many patients report getting lost while driving around their own neighborhoods. Many patients have told me they could no longer remember enough to perform the detailed tasks of their jobs.

For me, the fatigue was the worst of it --during the years I had Lyme disease, I collapsed in a heap every afternoon while my children were in school, my exhaustion overwhelming and profound. Sure, there are studies that minimize these types of ``subjective'' symptoms as being almost irrelevant.

But just because you can see evidence on the outside --for instance the rash or joint swelling-- doesn't mean the devastation on the inside can't also be measured in a reliable fashion or shouldn't be given primary weight as perhaps the most important and clinically relevant outcome of all.

Unresolved Lyme and tick-borne disease can be a nightmare for parents, who bear the heartache of watching their children suffer along with the sense of helplessness and despair that comes from a medical community all too quick to dismiss their complaints: Take it from me. My two boys are better now, but both lost their childhood to Lyme and tick-borne disease.

After a child has been allowed to slip through the cracks of early diagnosis and treatment, the stage is set for isolation and alienation as the child drops from clubs, sports teams, friendships and often, even school. In the wake of the child`s decline, schools often push psychiatric interpretations, foisting inappropriate labels and discipline or help. When the child doesn`t respond to wrong-headed strategies, the schools may accuse parents of poor skills in parenting or even Munchausen by proxy, a diagnosis that has been called into disrepute by top experts in psychology and psychiatry, but still manages to rear its head as an accusation where mothers and Lyme disease are concerned.

What a chasm I found between the patients I interviewed and some physicians at teaching hospitals in the northeast. One well-known academic told me that virtually all Lyme patients are diagnosed early these days, and for the rare one who slips through the cracks to late stage disease, treatment response is guaranteed. ``If the patient doesn`t respond, he never had Lyme disease,'' the doctor said.

When, during grand rounds or training sessions, such doctors suggest the patients are bogus --malingerers too wimpy to handle stress, middle-aged suburban women with somatoform disorder, or hypochondriacs in search of the disease du jour-- they have poisoned the chance of timely diagnosis by predisposing front line primary care physicians to seek psychiatric explanations first. With early treatment off the table, such patients wander from family doctor to clinic to teaching hospital, from one specialist to the next --and then off the grid.

My family found our way to doctors who diagnosed infections clinically and treated empirically, all the while using modalities for symptomatic relief of chronic disease: These were the best of the Lyme doctors. They treated our babesiosis and addressed our Lyme relapses and, over the course of years, brought us back to health. We found them compassionate and responsible, but being the patient of such a doctor is stressful: He or she may be under investigation, and rarely takes insurance for fear of being profiled as an outlier and then delisted and further stigmatized, making the financial burden on the patient intense.

Other patients default to outright quackery: dangerous chemicals and mixtures; lethal levels of heat applied to internal tissues; risky doses of salt. Today, some patients are spending life savings on trips to India for a black box therapy said to be based on stem cells. A Diaspora of the desperate and broke, many of these patients have come to the end of the line.

It is hard enough to be sick--but to be so sick for so long and also be a suspect--to have your physical pain, your integrity, your very sanity called into question as you travel the medical landscape begging for help, well, let me tell you, that is a crushing course of events. In most other diseases, the sick person can focus on being a patient--on following through with treatment to try to get well.

No one suggests the cancer patient is factitious, or the heart patient a sociopath. But in Lyme and tick-borne disease, the brutality of such rejection on top of real physical illness has traumatized the patient community writ large.

No wonder patients are in such turmoil. The three largest patient advocacy organizations have staged a boycott of this forum because they say it is biased against them. To quote their press release, they ``remain skeptical that the process will lead to a true understanding of the patients' needs.'' The history of the patient experience has robbed them of faith that anyone in government will understand their pain or address their plight.

It has been almost 35 years since Polly Murray reported the strange set of symptoms in her town of Lyme to the Connecticut Department of Health. Back in 1976, Murray noted the loneliness of her journey, but decades later, new patients travel the same lonely path as if Murray had never paved the way. Too many of us still spend years seeking help for what was, in the beginning, incontrovertible and classic Lyme disease, only to reap the whirlwind of late diagnosis and failed treatment--even in the most endemic areas of the United States.

In interviews with hundreds of these patients, I found that relapsing-remitting illness was an overriding hallmark of the chronic disease. Use of antibiotics was overwhelmingly the strategy patients preferred for fighting back, though which drug might work for which person was highly variable, suggesting a scenario that is outrageously complex.

I myself had a relapsing-remitting illness. I was infected for some seven years before diagnosis. I was treated and seemed to get better, but every time I stopped antibiotic treatment I relapsed like clockwork over the course of two to three months. I went through draining cycles of relapse followed by retreatment for four years before the recovery was sustained. Can we really dismiss this common experience as coincidence or a psychiatric disease?

I`ve heard it said that all Lyme patients want are more antibiotics, but that isn't true. Patients just want to get well, and any therapy that cures them would be embraced. No reasonable person would ever argue that the answer sought by future science should be endless antibiotic treatment for years on end--even if infection remains chronic at low level, as the evidence suggests.

To help these patients, medicine must acknowledge their pain. And science must deal with the complexity. Anyone who follows bioscience knows what's happening out in Seattle, where the medical pioneer, Dr. Leroy Hood, is building data-driven P4 medicine --the personalized medicine of the future that any patient group this varied needs.

As Dr. Ben Luft suggests, only a systems biology approach can target the full spectrum of infections, strains, and immune cascades for every patient involved.

We are long past the point where we can keep telling patients that they themselves are deluded because the science is state-of-the-art when, clearly, their diagnosis and treatment come from the century past. Yet hearing this bald assertion is part of the patient experience, too. Of course it gets them upset. We've all gotten stuck. We have academic scientists embroiled in a broad, dumbed-down fight with patients over the issue of chronicity while a revolution in bioscience has reframed the questions we need to ask.

I'll end with a paraphrase of Tolstoy: Every early stage Lyme patient is pretty much the same, but each chronic patient takes a singular journey of one. For many years, this discomfiting fact has undermined the patient narrative. But with the advent of proteomics, genomics, and other 21st century tools, with greater powers of vision, the story told by bioscience and the story told by patients might finally converge.

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Misfit
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If I could, I would give this a STANDING OVATION.
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Carol in PA
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Thank God for Pam.

Carol

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AlanaSuzanne
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RKS: thanks so much for posting this.

Pam: Thank you from the bottom of my heart.

--------------------
You gain strength, courage, and confidence by every experience in which you really stop to look fear in the face. You are able to say to yourself, 'I lived through this horror. I can take the next thing that comes along.'

---Eleanor Roosevelt

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kimmie
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Thank you Pam for your strong voice when so many of us are weak and still fighting.
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METALLlC BLUE
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I'm really happy Pam went. I believe, and I thought this before, that by the big three pulling out, that left room to identify the true gravity of frustration. It allowed voices to be heard -- like Pam's.

Changing tactics is what we need to win a war. If doing the same thing over and over isn't working, then perhaps a method like this might induce attention, which it did.

They ran news articles, where they otherwise would have ignored this, had some tension and conflict not been generated.

--------------------
I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.

E-mail: [email protected]

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lymeladyinNY
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She is an awesome writer and speaker. Thanks to you, Pam!!

--------------------
I want to be free

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mtree
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thank you Pam for giving a voice to the Lyme Community....

[bow] mtree

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

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Keebler
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-
rks,

Thanks so much for posting this. It made my day to see this.

Pam,

Thanks so much for writing this - and presenting it. Very well done. It gives us some dignity in a situation that has been brutally abusive. I can only hope it helps open some eyes and ears.

Thanks for speaking the truth.
-

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sammy
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Her words are so painfully true.

Thanks to Pam and all of our advocates who are willing to stand up and fight for us.

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lymie_in_md
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Everyone in the room was giving her a standing ovation and I was fortunate to be standing with them, including the members of the committee. I have great hope the medical community will finally recognize tick born infections as seriously as they should. And thanks in great part to Pam for standing up for all of us.

--------------------
Bob

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INEBG
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Reading the content of this speedch made my day, too. It's so easy to feel disenfranchised with this disease. Bravo, Pam.
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Tincup
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By participating, her name will be on the final report, and she (and all of us) will have to live with whatever the IDSA comes up with as a final report for Congress (keeping in mind this is exactly the venue they wanted and the deck is stacked against us) and she (and we) will have no ability to change the outcome.

By participating and talking about personal stories rather than the research needs and science (which was the topic and focus), the "patients" ability to present the scientific views were given the required official "time".... so the IOM can say they did their job.

And it will reduce if not totally eliminate the ability for us to get another hearing with a balanced panel ... that could produce a balanced/fair report.

By participating, the IOM will be able to say they fulfilled their duty by "allowing" patient input, if the Panel uses it or not... or if the final review by the anonymous panel leaves it in or not.

The final report will also help determine the future of science in the tick borne disease world.... and who gets the funding. Stacked with IDSA there, who do we think that will be?

I hope she (and the others who attended) will be there working as hard as they can go on fixing this situation when the roof comes down on our collective heads... or we are stuck with the status quo for another 20 years.

THEN maybe I will be able to do a standing ovation. Till then I am sick about it. In fact....

Anybody want a job? It is 15-18 hours a day- no pay of course- but you do get the benefit of a regular trashing from outside and inside the community to look forward to every day.

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

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lou
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I think you need to take a vacation and do something else for a while. A person can only stand so much bad news. Don't try to carry the whole world on your back.
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lymeshmyme
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She is an incredible person and what a journey her family has been on. Great voice for the community.
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pmerv
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Some people decided to participate, others decided not to. We don't know what the outcome will be. It may be that having this tension will serve us better than if everyone had not participated, or had we ALL participated. In any case, it is what it is, and it's likely we will have to continue the fight. Going forward I'm sure Pam will do her part the best she can, as we all do. I think most will agree her best has been pretty darn good so far.

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Phyllis Mervine
LymeDisease.org

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Keebler
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Ditto for all your help, too, Phyllis. Thanks a bunch for all you do !
-

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mad dog
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prior to attending the IOM hearing, I can honestly say that I held respect for both schools of thought. I did not blame or chastise those who boycotted the hearing as it is their right to effectuate change in the way that they see fit.

I chose to attend. The hearings would take place with or without me. I decided that if I did not show up, I was in essence, defeating myself as my side would not be presented.

In my humble opinion, being obstructionist or storming out of meetings,only serves to flame the illusion that we are, in fact, "crazies" as labeled.

Margaret Meade said, "It only takes a small group of thoughtful, committed citizens to change the world; in fact, they are the only ones who have."

Thepresenters on behalf of our community were prepared and eloquent. The hearings were open and broadcast on the web. There is a record and there was meaningful dialogue. There was a softening of many who rigidly denied us historically.

We must strive to keep the dialogue going for only in that manner can we ever hope to be heard.

The patient perspective was stellar. Pam Weintraub got a standing ovation at a medical/scientific hearing. She was a force to be reckoned with. Kudos to Pam for having the courage to stand in the face of adversity and to transport the panel back to the real focus.....how are we going to address this epidemic and care for our afflicted.

kudos to the activists, NatCap and attendees who professionally and compassionately delivered their messages.

There was a shift in the movement at this hearing. TC- While I respect your right to have abstained from the hearing, it is the same old drama to sit back and attack those working so hard to contribute. There are many paths to the finish line. Perhaps the community would be better served if you could save your venom for the opposition as opposed to your allies.

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pmerv
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well mad dog, I once felt as you do now (paragraph 2), but personal experiences with various committees I have served on made we want to try a new tack. We'll see how it turns out. I don't think it's over yet and I'm sure there will be plenty of fight left for all of us after this all comes down.

--------------------
Phyllis Mervine
LymeDisease.org

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pmerv
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ps to my knowledge, no one "stormed out." CALDA's withdrawal was cold and calculated.

--------------------
Phyllis Mervine
LymeDisease.org

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Paul Mall
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TO watch the video use the link below and jump to 43 minutes

http://www.tvworldwide.com/events/iom/101011/default.cfm?id=12858&type=flv&test=0&live=0

Paul

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Paul Mall
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Another section you might want to watch

is Gregg Skall

http://www.tvworldwide.com/events/iom/101011/default.cfm?id=12874&type=flv&test=0&live=0

Jump to 28 minutes 35 seconds

Paul

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Robin123
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It's an interesting situation - I say we push the agenda forward no matter whether we chose to participate or not.

Those who chose to go spoke for our needs, and those who chose not to partecipate also acted on our behalf.

Whichever path we take, be vocal and push the truth forward about the need to study and take these illnesses and our collective situation seriously.

Maybe we need to be ready with our own report from the proceedings, including testimony at the mike from patients and doctors. Then we could send our write-up of the proceedings to Congress too.

Also, I don't think we can afford to be silent in doctors' offices anymore. Do not accept gibberish from them. Speak up. Let them know you know there's a problem. Counteract their misconceptions.

No more victimization of us, if we know what's going on. Empower ourselves to do the work that needs to be done.

Educate them wherever you go. I am ready with brochures now. Tell them what you know. Say yes when they get it right. Say no when they don't.

Don't allow a doctor to say something untrue if you know an actual different truth, like there really is Lyme in fill-in-the-blank location.

Don't wait to come here to tell us what the latest doctor told you. Come here and tell us what you told that doctor when they told you that!

Do not give them your respect unless they are willing to respect what we're really dealing with: a multi-illness holocaust.

One more thing - I have often found it useful to speak with medical professionals in a personal way, which is that you, your family, your friends, your acquaintances could also get these diseases.

It wasn't until I shared with one doctor that someone here got Lyme when the dog brought the tick inside the home that I saw real worry on his face as he let me know he had just agreed to walk a dog the following week. Maybe taking a personal approach can also be helpful.

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John S
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quote:
Originally posted by Tincup:
By participating, her name will be on the final report, and she (and all of us) will have to live with whatever the IDSA comes up with as a final report for Congress (keeping in mind this is exactly the venue they wanted and the deck is stacked against us) and she (and we) will have no ability to change the outcome.

By participating and talking about personal stories rather than the research needs and science (which was the topic and focus), the "patients" ability to present the scientific views were given the required official "time".... so the IOM can say they did their job.

And it will reduce if not totally eliminate the ability for us to get another hearing with a balanced panel ... that could produce a balanced/fair report.

By participating, the IOM will be able to say they fulfilled their duty by "allowing" patient input, if the Panel uses it or not... or if the final review by the anonymous panel leaves it in or not.

The final report will also help determine the future of science in the tick borne disease world.... and who gets the funding. Stacked with IDSA there, who do we think that will be?

I hope she (and the others who attended) will be there working as hard as they can go on fixing this situation when the roof comes down on our collective heads... or we are stuck with the status quo for another 20 years.

THEN maybe I will be able to do a standing ovation. Till then I am sick about it. In fact....

Anybody want a job? It is 15-18 hours a day- no pay of course- but you do get the benefit of a regular trashing from outside and inside the community to look forward to every day.

Weintraub had a hard decision. There was nothing she could do about the overall make-up of the committee. If this might be the last say for years and if the IDSA was going to have their cake, no matter what, I think she did the right thing by at least giving our and her story for the record. If everyone withdrew, it would have been in effect an IDSA only hearing, which I'm sure they would have rather had. Words resonate, and I'm sure that even if we don't win this particular battle on this day, that her's will be remembered and have an impact on the future.
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John S
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P.S. Tincup

I know that you realize how evil the monster that Lyme disease is. I don't think you could walk away from fighting it and not have that decision gnaw at you everyday for the rest of your life.

To suffer such an abhorrent evil to exist and do nothing would be immoral.

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mad dog
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pmerv

Sorry for the misunderstanding. I wasn't referring to Calda or any group when addressing the "walk out" portion in my post. I was referencing past experiences in other lyme related matters.

I am painfully aware that these projects often have an agenda far different from how they appear on the surface. i respect Calda and LDAs decision to boycott as their personal statement.

My position is simply that for me, I think that we must continue to show up and present in a professional and well informed manner. We will not always win or be heard however, we establish ourselves as a growing vocal community and create a record. I do believe we were heard at this hearing. While we may be disappointed in the panel's outcome, there was a distinct shift in some of the more historically rigid presenters.

i look forward to a day when all the advocacy groups will come together to work toward the common good. " you may say i'm a dreamer" its ok, I'll keep dreaming!

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mad dog
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Paul Mall

Gregg Skall was the perfect ending to the conference. NatCap worked tirelessly on their portion of the presentation and i applaud their hard work and professional presentation!

Many thanks to NatCap

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METALLlC BLUE
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Come on Tin, go easy on her. We know this fight has been going on for 30+ years. We know that every single hearing and presentation has been basically the same outcome. We know.

We're trying to do things differently but with the same agenda and goal. We'll figure it out, but give Pam a break. Breaking ranks is often one of the most significantly effective methods, otherwise we too can become dogmatic about the way we approach our own agenda.

Remember all the times in history where a group of individuals or a community had to overcome oppression and denial. The tools they used are similar to what we're doing here.

What was done here was a "Distraction tactic" -- the main "army" stayed to the side while the snipers and special op's teams were sent ahead. Small "spinter cells" can accomplish a lot while preserving the energy of the main army.

Read The Art Of War. We're at war here and the same techniques work, and I believe that is what we saw here.

--------------------
I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.

E-mail: [email protected]

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onbam
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A good speech, and one we should save for use in other contexts.

However:
The point as I understand it was to reveal that the hearing [I]was[I/] strictly an IDSA hearing. Now that claim can't be made.
I really think that if Blumenthal can't win with a hearing, we're told all we need to know about "the system."

Hope Ventura really brings it tomorrow.

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AlanaSuzanne
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I think what happened was the best possible outcome.

It is now public record that CALDA, et al withdrew from this for valid reasons.

And there is now a public record of Pam Weintraub's speech. Pam was the perfect person to speak in this forum. She said everything that needed to be said, intertwining the perspectives of a patient, a wife, a mother, an author and respected science writer.

Kudos to the organizations that withdrew, and kudos to Pam.

There are many paths that lead to the same destination.

And Robin, you go girl. I agree with you. I am always armed with information, and will readily offer a response if a medical professional dares to dispute my reality.

--------------------
You gain strength, courage, and confidence by every experience in which you really stop to look fear in the face. You are able to say to yourself, 'I lived through this horror. I can take the next thing that comes along.'

---Eleanor Roosevelt

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Tracy9
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Any tactic could have had a negative outcome. If absolutely everyone pulled out, what would have stopped them from calling us uncooperative, or saying it was an all IDSA hearing because we made it that way?

There is no way to know how it would have been perceived. I think Metallic Blue's comparison to war tactics is BRILLIANT and sums it up perfectly.

--------------------
NO PM; CONTACT: [email protected]

13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG.

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Robin123
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Good discussion. We already know that the report they make is going to be given to an anonymous review panel before the final report is made. Meaning that they have the right to throw out everything we've said.

Look at the set-up - a complete lack of transparency and willingness to meet us face to face.

Given all that, we walked out, and we spoke up.

And we will continue to tell the public what is happening.

We need our report of this workshop's testimonies. Perhaps it could be given to Congress, with a highlighting of the differences between the original testimonies and the final version. Sorta like a bill that got a lot of its original language eliminated.

I think we all know we're in this for the larger picture, that of dealing with the truth of what we're dealing with, not a cover-up.

Thx, Alana - I invite everyone to be ready to discuss medical truth in medical offices. Also to educate the staff.

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liesandmorelies
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Wisdom is knowing what to do next; virtue is doing it.
~David Star Jordan, The Philosophy of Despair


I thank Pam from the bottom of my heart for following her conviction. She has been a model of integrity, grit and graciousness. I applaud her for making the decision to do this.

--------------------
aka: Lyme Warrior

In order to do "real" science, you have to have a "real" conversation with nature.

Well Behaved Women Rarely Make History!

"Just Demand your Rights"

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liesandmorelies
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Wisdom is knowing what to do next; virtue is doing it.
~David Star Jordan, The Philosophy of Despair


I thank Pam from the bottom of my heart for following her conviction. She has been a model of integrity, grit and graciousness. I applaud her for making the decision to do this.

--------------------
aka: Lyme Warrior

In order to do "real" science, you have to have a "real" conversation with nature.

Well Behaved Women Rarely Make History!

"Just Demand your Rights"

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seibertneurolyme
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Anyone have any idea when the report will be available?

Robin -- I always speak up as well. One doc offered me a free psych eval after I disagreed and said that hubby's illness was physical rather than psychological. And then there was the doc who took me aside and said hubby was not vomiting correctly so he obviously had a psych problem -- at the time he was eventually diagnosed with a paralytic ileus!!!!!

Metallic -- I think of the strategy more as to divide and conquer. Will it work? -- time will tell.

Bea Seibert

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Robin123
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Bea, they said the report would be out early in the year.

Yes, speak up - don't let them have the last word anymore.

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Keebler
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-
My eyes will not let me read all the posts right now but (at another thread) Robin123 suggested I post this list here (I hope I found the right thread).

This would be a good basic list for all journalists, too. We need some scholarship programs so they can get some immersion training. Often, their job schedules really don't allow time for them to learn.
-

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Keebler
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-
As extensive as this list is, it is just about half of what I would consider a good introductory packet. Tick-borne disease is very complex. These stepping-stones offer anyone new to all this a place to begin, step by step - taking a good breath at every turn.

================

www.ilads.org

ILADS - International Lyme and Associated Diseases Society

=================

http://www.lymediseaseassociation.org/

Lyme Disease ASSOCIATION

=================

http://www.ilads.org/lyme_research/lyme_articles4.html

Lyme Disease: Two Standards of Care

by Lorraine Johnson, JD (revised 2005)

=========================

http://www.clinicaladvisor.com/controversy-continues-to-fuel-the-lyme-war/article/117160/

From the May 2007 issue of Clinical Advisor The Clinical Advisor is a monthly journal for nurse practitioners and physician assistants in primary care. Home page: www.clinicaladvisor.com

CONTROVERSY CONTINUES TO FUEL THE "LYME WAR"

Discusses differences in the methods of the IDSA from those of ILADS

========================

http://www.lymedisease.org/news/lyme_disease_views/592.html

THE HUMAN FACE OF TICK-BORNE DISEASE - by Pamela Weintraub

October 11, 2010 at the Institute of Medicine (IOM) Talk on state-of-the-science Lyme workshop. She is author of CURE UNKNOWN

=================================

http://tinyurl.com/5crsjv

CURE UNKNOWN: Inside the Lyme Epidemic (2008) - by Pamela Weintraub

This details what an entire family went through. Having this knowledge of their journey will help others to get better, faster treatment.

http://www.cureunknown.com

==============================

http://www.underourskin.com

Documentary: UNDER OUR SKIN

(you can purchase for $35 at the site or see if you local lyme support group has a copy to lend.)

========================

http://www.lymepa.org/html/dr__j__burrascano_september_20_0.html

Burrascano's Powerpoint SLIDE presentation 9-20-08

------------
http://www.ilads.org/lyme_disease/B_guidelines_12_17_08.pdf

Advanced Topics in Lyme Disease (Diagnostic Hints and Treatment Guidelines for Lyme and Other Tick Borne Illnesses

Dr. Burrascano's Treatment Guidelines (2008) - 37 pages

------------
As important as any supplements, sections regarding self-care:

Go to page 27 for SUPPORTIVE THERAPY & the CERTAIN ABSOLUTE RULES

and also pages 31-32 for advice on a safe, non-aerobic exercise plan and physical rehabilitation.

----------------------
This is included in Burrascano's Guidelines, but you may want to be able to refer to it separately, too:

http://www.lymepa.org/Nutritional_Supplements.pdf

** Nutritional Supplements in Disseminated Lyme Disease **

J.J. Burrascano, Jr., MD (2008) - Four pages

==============================

It's very important to have this book as a reference tool for self-care and support measures. It answers so many questions in detail that is impossible here on the forum.

http://tinyurl.com/6lq3pb (through Amazon)

THE LYME DISEASE SOLUTION (2008)- by KS, MD

You can read more about it here and see customer reviews.

Web site: www.lymedoctor.com

===============================

http://www.lymeinfo.net/index.html

LYME INFO Website

* details about Lyme disease symptoms, diagnosis, treatment, and prevention

* peer-reviewed medical literature

===============================

Regarding psychological and psychiatric matters caused by neurotoxic infections:

www.thehumansideoflyme.net

The Human Side of Lyme

Deliberations of a psychiatrist who evaluates and possibly diagnoses Lyme and other tick-borne diseases of the mind, sharing case histories . . . .

===============================

http://www.lymedisease.org/

California Lyme Disease Association (CALDA) is a non-profit corporation acting as the central voice for all tick-borne disease issues. An excellent website for anyone in any state.

===============================

http://www.publichealthalert.org/

PHA - Public Health Alert - an on-line newspaper devoted to education in the field of lyme and tick-borne disease.

===============================

STATE - Many states have their own Lyme disease association, network or group of a similar title. A Google search can often find that. Be sure they are ILADS-minded, though.

================================

http://www.lymenet.org/SupportGroups/

Find LOCAL LYME SUPPORT GROUP
-

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Tracy9
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Geesh Keebler, if you ever have any extra time on your hands, we sure could use you to spread some of the knowledge around over on Lymefriends.... [Wink] ))

We don't have enough old timers posting links, etc over there. And lots of newbies seem to land there, too, even though lots of people are on both sites and we have lymenet.org listed right on our registration page.

--------------------
NO PM; CONTACT: [email protected]

13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG.

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Keebler
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-
Tracy,

I've not showered since Friday. And that is typical. I wear myself out here and have nothing at all left, even for my own study. My brain tends to only work for certain things and there is some brain stimulation to the puzzles presented here.

But, since I can't stand for long, I do get stuck at the computer and use up my "shower energy" too often. Procrastination, I suppose.

When I see a question, I can go to my links and find a piece of the puzzle. I am not all that up to date, many of the links are years old. But for those new, with the basic questions, it's a start.

I also can't look at most other sites besides LymeNet, with their light grey background and nearly no ads. My eyes spasm so any photos even toss me to the floor.

Any backgrounds that are lighter in tone than here and it's blinding to me due to contrast, although my computer light is adjusted down as best it can be.

Anything that moves can trigger seizures. Fortunately, not too many here use the moving icons but the Amazon ad is a constant irritation that I try to move off my screen.

I do appreciate your asking, though, but answering some of the same old questions here is more than I can manage, really.

And, I'm nearing the point where I won't be able to do this much longer as my own care is falling behind. I'm very burned out but still find my brain tries to find some answers and knows how I felt when I was all knew to this.

I get mad that the ticks (or at least doctors) don't hand out patient care booklets from moment one so people have a roadmap. But I'm loosing my oomph for sure.

I'm hoping that others will start copying links and posting them, too. One poster was working on a -- word choice - patient booklet with an index sort of thing but I've been too tired to even get involved with that. An index would be very nice indeed to free up those who answer the same questions from new posters every day.

The search feature here does work well, though. And the Newbie links are full of great links, too. You might direct some questions over at LF to the Newbie links and LN search feature.

Hey, LymeFriends has a nice reputation. I tried to sign on the last time LymeNet was down but my eyes and brain just couldn't hold me up long enough. But, I seem to be the exception regarding sensory stuff.

Glad so many find the space you created there to be a good "gathering" place for support that complements LN. Sorry that I'm not able to add to that. Good luck, though.
-

[ 10-17-2010, 10:45 PM: Message edited by: Keebler ]

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IMHisda
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Maybe the fact that Pam Weintraub received the standing ovation will speak to some-all we can do is pray someone on that IDSA will finally get it and do the right thing for once.

--------------------
RV

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Keebler
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-
The last speaker at ILADS on Friday, Oct. 15 mentioned that, at the recent meeting, the IOM was "indifferent" to the complexity of lyme and what patients have to face. That was very sad to hear.
-

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Tracy9
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Thanks, Keebler....you would probably explode with sensory overload at LymeFriends for sure! It was started by a bunch of us Lymenetters to complement Lymenet with a more "Facebook for Lymies" type atmosphere, where we could post pictures, get to know each other more visually, make groups, etc. I often post links to threads on Lymenet. I wish I had more energy to post more information, but little by little I'm trying to post more in the groups, where it is easiest to find. In fact I do have links to your threads in some of the groups.

I'm so sorry you aren't feeling so hot. You are such a valuable asset here. I marvel at how much you put in to helping others. I hope you get that shower, soon. Hugs!

--------------------
NO PM; CONTACT: [email protected]

13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG.

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