Your tax dollars at work: Namecalling, demeaning attitudes towards Lyme patients
According to Kris Newby, senior producer of “Under Our Skin,” government employees who manage millions in Lyme research grants show utter disdain for those they’re supposedly trying to help.
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Words that hurt patients
by Kris Newby
Recently, a stash of emails published in The Poughkeepsie Journal show that the government employees who manage millions in Lyme disease research grants have been calling infected Lyme patients “loonies” and their physicians “quacks” and “parasitic.”
With no real scientific evidence, the Lyme researchers who are funded lucratively by these government officials regularly refer to Lyme patients as suffering from “somatic syndromes” that are “largely psychological.” In their Lyme treatment guidelines, they claim that Lyme disease is “hard to catch and easy to cure,” and that symptoms that persist beyond this treatment are due to “the aches and pains of daily living” or “prior traumatic psychological events.”
The use of these unscientific labels biases front-line physicians from making accurate diagnoses of this potentially serious neurological disease. All too often, patients whose Lyme symptoms linger are cut off from curative antibiotics too soon. Instead, they are prescribed painkillers and antidepressants that never get at the root cause of what may be a smoldering bacterial infection.
This “crazy” talk has to stop.
We all need to take a cue from author Susan Sontag, who reminds us that it is unhealthy for a society to use language that blames the victim.
And researchers in the U.S. need to start looking at the growing body of evidence that says that Lyme disease can survive in humans long the after two to four weeks of antibiotics recommended by the Lyme disease guidelines authors.
We all finance Lyme research with our tax dollars, and it is time to demand that the researchers who receive our funding are doing Lyme disease research without biases and commercial conflicts of interest. The Lyme cabal, as revealed in the CDC Freedom of Information Act email trail, is neither.
One doesn’t need to be an epidemiologist to see that America’s Lyme disease problem is growing at an alarming rate. Reported cases have nearly doubled in the last decade, according to the Centers for Disease Control and Prevention (CDC).
We need new blood in Lyme disease research. We need researchers who look at all of the published science on Lyme disease, not only studies that support their own hypothesis and research. And most important, we need researchers who will listen to the people who know the most about the disease and who have the most at stake — Lyme disease patients and their treating physicians.
Kris Newby is a science writer and the senior producer of the Lyme documentary, “Under Our Skin.”
As a medical professional and sufferer of chronic Lyme, I know chronic Lyme disease is very real!! I’ve suffered with it for decades before my physician diagnosed the disease and other tick-borne associated diseases. After almost 2 years on antibiotics, I have much less pain in my muscles/joints, more energy, and my chronic anemia is improving. I am not well yet, but much better. I have friends who suffered gross neurological deficits, could not walk without assistance and eluded diagnosis except for (after a brain biopsy) “non-specific brain inflammation.” This person is now walking well and back to work after the proper diagnosis of Lyme and long-term antibiotic treatment.
We must do a better job of diagnosing and treating this crippling and life-threatening disease! I shudder to think of all the victims who are labeled with fibromyalgia or chronic fatigue, or ‘crocks’ who really have a tick-borne disease. We must diagnose and treat long-term!!!! We must listen to and believe our patients!
Hello Dr. Mary Shaw…..are you located in the Northern Virginia area?….I was bit for the first time, May 30th 2011….I saved the tick and froze it….it is still in my freezer….noone believes me that I have Lyme, I was unable to get out of my bed for 2 months straight, if it were not for a complete stranger and the extra Doxycycline he provided, I know things would have gotten worse……fast forward to now….I was bit again (twice by the same tick after unsuccessfully trying to remove it)….the “mark” which is raised and circular (I put neosporin on it) is still there and I was bit on May 9th….I went to the ER where they prescribed the typical “Lyme treatment”, and it was only because I do not have a PCP that they prescribed 3 weeks…..I am beyond terrified….noone listens to me, they don’t believe me even though there is a “pandemic” in the county I live in…..Please help me…..I’m not sure what else to do. Thank you in advance for your time.
Candice
God Bless You for this article! I heard “in your head” til I was almost dead! Went doctor to doctor, and ER to ER, for most of my life. They were so mean. Knowing what I know now, this whole thing wreaks of Tuskegee. The Lyme cabal needs to go to prison, for the fraud in the testing, and the cruelty they have inflicted on millions, around the world. They cannot be allowed to inflict this on yet another generation.
So glad to see the Lyme Community getting sunlight on discrimination against the environmentally disabled in the United States. We blogged about it and the similarities between the way those chronically ill with Lyme Disease have been demeaned and harmed by medical “professionals” along with their counterparts in government, just like those chronically sickened by many environmental exposures. If one did not know better, it would appear to be an orchestrated hate campaign for the purpose of denying liability for causation and care of the environmentally sick, injured and dying. (Count me among those who do not know better!) Our blog: U.S. Government Pompous Asses and the “Lyme Loonies”. http://wp.me/lYPz
You are so right. It is astounding that government officials have been allowed to continue this behavior for decades. If this is the best that NIH and CDC can do, then why do we need them? The lyme disinformation program of these agencies throws doubt on all their programs and gives the public plenty of reasons to distrust them and to become incensed that tax dollars are being wasted. It is a giant public health fiasco.
I was told I was depressed before I was diagnosed. Had every test out there. Last year I was diagnosed with Lyme’s Disease after a positive test. It had progressed to the point of heart irregularity, joints so swollen and painful I could hardly use them, baker’s cysts in my knees, hearing loss, numbness, and many other disturbing symptoms. I was given 4 weeks of oral doxy. About three weeks after the end of the course, my symptoms returned with a vengeance and a few new ones showed up. I went back to my doctor and told her I was having the same symptoms and I did not think my Lyme’s was cured. She look at me with disdain and told that “No credible doctor would believe that your Lyme’s is still active and any doctor that does is a snake oil salesman.” She refused to treat me further.
Loonies? Quacks? Excuse me? I have a friend with CHRONIC Lyme disease, who is still fighting the leftover side effects. I was diagnosed with MS 8 years ago. I totally believed in my heart it was MS. After seeing “Under My Skin” three times, and with the polite but persistent urging of my friend, I am in the midst of making an appointment with a Lyme Literate doc. If I have Lyme, and can be treated successfully, then great. If I have MS, I’ll keep on fighting it.
Its ludicrous to me and I just cant wrap my head around it, that an entire group of scientific professionals and researchers can discard and insult people w/real significant health issues…? When there are masses of people with the same complaints and issues..
They are scientists for God Sake! Isn’t that the meaning of finding out the true root of illnesses and being open minded to all possibility, even to the point of giving all the patients (like me) the benefit of the doubt. I believe they all have truly lost the meaning of their jobs as researchers and scientist. To find the cause and treatment and to not give up on us….
I don’t know the original history on illnesses such as Lupus, MS, Lou Gerigs, Alzheimer’s, and even cancers. Did these same communities of researchers and scientists ignore and degrade all those individuals with there complaints of illness before they had a title or solid grip on these REAL diseases.
I think MS was called “fakir’s disease” before someone figured out how to “see” the holes in the myelin sheath.
Hi there, I don’t know the history of how the “public servant researchers” paid by us treated the “loonies” like us during past medical research, but I recently read that Polio sufferers were, you guessed it…”loonies” until President Roosevelt joined their unfortunate ranks, then suddenly the story, and funding, did an about face.
kris,
thank you so much for the informative article above but HEARTFELT thanks for delivering all the overdue 3,000 pages to mary beth pfeiffer so she could write the OUTSTANDING lyme series she has just completed.
TRUTH PREVAILED especially when we got to read the actual EMAILS from those GUILTY of stopping nationwide lyme/vb legislation at our capitol.
THE HOGWASH STOPS NOW!
the may awareness rally’s HAVE made a huge difference. THANKS again kris!
bettyg, iowa LYME ACTIVIST
Hopefully the sunshine gets to the right eyes.
I Have been sick for years. I am convinced the research is rigged. I think that whoever has the money gives it to the so called researchers and tells them the conclusion they want write in the data needed for this conclusion. I was covered with text book bulls eyes and that Dr was sooooooooooo nervous he broke out in a sweat.
When is there going to be public outrage at the price gouging that is currently going on with Doxycycline Hyclate by the manufacturers of this antibiotic.It cost me $11.00 for my prescriptions as I battled my Lyme which I finally defeated Thank God.Now go try to buy this life saving antibiotic it is a disgrace what Big Pharma gets away with in this country.They claim there was a shortage to raise prices but it was always available.Rumor has it that hospitals are stockpiling this antibiotic in case of an anthrax attack.Just any Ole StrawMan to jack up the price to raise profits for the Fat Cats.Our Government is a disgrace and the idiots put in place to dispense funding are a prime example of how out of control our Government has become.They think nothing of wasting Billions of dollars while making fun of people and pets suffering from a VERY REAL BACTERIAL INFECTION.It makes me wish they all had to experience just a few days of what Lyme Disease is all about.They would soon understand what Hell is all about.Pets as well as people are going untreated due to price gouging of Doxycycline and it needs to stop NOW !!!
If I hadn’t spoken to Kris 2 years ago, I’d never have known that I’d never been treated adequately, and would never have known to seek out a real LLMD. Long-term, multiple abx treatment isn’t fun, but it’s made a huge difference. The suppression of information had left me wondering for years what was wrong. I never realized I had been given a half-baked, poorly done ILADS approach by the so-called “experts” at the famous “Lyme Center” here in the Big Apple. But soon after learning how to research the issue, it was clear that the two major IDSA people I saw after the others (who called the others “quacks” and declared me “cured”, even with non-specific, anti-nuclear antibodies in my CSF!) had convinced me nothing was wrong — when it clearly was. Time and proper treatment has proven this, beyond question. What is wrong with the CDC? For that matter, what is wrong with journals like NEJM, who publish the fallacious words of those very people who declared me cured? Conflicts of interest? Genetic patents? The old-boy network? Probably all of these, and more.
Fortunately, there are people like Kris, and a growing number of doctors becoming aware. If we know doctors who think Lyme isn’t possible in a patient because “it doesn’t happen in this area”, we have to inform them. I’ve done that with many — and they listen, perhaps because I scare them with evidence, facts, and a decent knowledge base that rivals their own.
I read stuff like this..or most anything about lyme because there’s no research to find an adequate cure, and it all makes me want to cry. Sometimes I do. I’m in my early 20’s, completely disabled, had to stop college, possibly have permanent vision damage and zero quality of life. As far as I’m concerned, I died at 23. I’ll soon be on iv but the possibility of getting my life back or being cured seems far off if not impossible. Lyme Disease destroyed my life and put me through unimaginable suffering. As a young girl who used to run miles a day, was part of student government, played a high school sport, got straight A’s and didn’t even have to try to do so, and had high hopes for life, I’ve been reduced to physical experience so painful that I’ve cried with the type of sorrow most people never or rarely know of.
Where is the compassion from the people responsible for this? Do they have no heart? Do they not feel? Are they so inept at relating to other people that they can’t muster the capability to care? Are they pure evil?
I hate that people I’ve never met before have had the power to control the path of my entire life and the suffering I’ve endured through their actions. It’s wrong.
If they’re doing what they’re doing because they lack compassion, someone should inspire them to at least stand up and be a man. Be honorable. Go do the right thing. When people behave in a way that hurts others, they can’t possibly feel good about themselves. Their wallets might, but I’m talking about the person. Their souls are black with the deaths and suffering of hundreds of thousands of people in America and many more world wide. The pressure must be immense.