LYMEPOLICYWONK: LymeDisease.org responds to Slate’s “Lyme-Illiterate” article
In the final days waiting for Governor Cuomo to sign the Lyme bill in New York that would ensure Lyme patients access to diagnosis and care, Slate magazine ran what can only be called a Lyme bashing piece designed to kill the legislation. LymeDisease.org responded with this letter to the editor.
LDo Letter to the Editor of Slate
December 12, 2014
Julia Turner
Editor in Chief
juliaturneratslate@gmail.com
Re: Lyme Illiterate by Brian Palmer
LymeDisease.org is appalled at the recent Slate article, which viciously attacks both those who suffer from Lyme disease and the physicians who treat them. It is malicious, untrue, and inhumane. Reporter Brian Palmer misrepresents the evidence in every possible way. We remember similar hateful attacks on people with HIV/AIDS in the early days.
The Infectious Diseases Society of America, which Palmer regards as the sole guardians of expertise in this arena, was 10 years late to the party in recognizing the need to treat HIV/AIDS. Another medical society, AAHIVM, led the charge in its absence and with the support of the pharmaceutical industry, embraced the broad range of clinicians who provided HIV care and fought for better access to care for HIV patients. That’s why today two HIV medical organizations (AAHIVMI and the HIV Medicine Association, a branch of IDSA) exist. http://tinyurl.com/q49ua5z
In a similar fashion, it was the lack of IDSA responsiveness to the needs of Lyme disease patients that gave rise to ILADS. Studies show unacceptable lack of sensitivity in IDSA’s recommended testing procedure (50%) and an unacceptably high failure rate of the IDSA Lyme treatment protocols (25-36%). http://tinyurl.com/l3cjfjd IDSA’s own researchers have noted that IDSA guidelines in general are based primarily on opinion, not evidence. http://tinyurl.com/m24bkya Even worse, IDSA Lyme guidelines have not been updated since 2006 and do not reflect current science. IDSA employed no rigorous evidence review and its guidelines do not conform to the standards of the Institute of Medicine (IOM) for trustworthy guidelines.
In contrast, the ILADS guidelines were revised this year, using the rigorous evidence assessment scheme (called GRADE) recommended by the IOM. ILADS included the patient voice in the guideline development process. http://tinyurl.com/k7hhssh Contrary to Palmer’s libelous allegations, ILADS doctors—not IDSA doctors—are the ones applying the latest research to patient care.
LymeDisease.org is no stranger to evidence-based medicine. I have been involved with the Cochrane Collaboration for 6 years and co-chair the national Consumers United for Evidence Based Healthcare. I am also a patient representative of the Patient Centered Outcomes Research Institute, which was founded by Congress under the Affordable Care Act. I also serve on both the Steering and Executive Committees of its $100 million dollar big data project, PCORnet.
The IDSA exists to promote the interests of its members, who are largely researchers. Patients are not even on the agenda. The group spends enormous amounts of money every year to lobby for research funding. IDSA’s interests in Lyme disease are aligned with promoting the interests of insurers, controlling research grant funding, and controlling the research paradigm. Its researchers involved with Lyme disease have strong industry ties with vaccine developers and diagnostic test kits. http://tinyurl.com/l4x6mnq These commercial interests are not trivial. IDSA has engaged in an all-out war on its competitors—viz. ILADS doctors—whom it drags before medical boards with impunity. As the chart below reveals, IDSA lobbying expenses spiked significantly in 2006 and 2009 in connection with its Lyme war advocacy. http://tinyurl.com/q8w52gd
Palmer got many facts wrong. LymeDisease.org not only funds research, we conduct it. Our large-scale surveys of over 5,000 patients are one of the few resources researching this population. Patients with chronic Lyme disease suffer on-going symptoms affecting their ability to function and engage in the activities of daily living. A full 43% report that they have had to stop working, while 25% report that they have been on disability at some point in their illness. Patients with chronic Lyme disease report significantly more “poor physical-health days” (using the CDC HRQoL) than those with chronic low back pain, asthma, diabetes, cancer, depression and cardiovascular disease. Chronic Lyme patients are five times more likely to visit physicians and are twice as likely to be seen in an emergency room department or have an overnight stay in the hospital than other patients. Twenty-two percent report requiring special needs equipment, such as a cane or wheelchair. https://peerj.com/articles/322/
Contrary to the author’s assertion that those with chronic Lyme are usually treated with IV antibiotics, we find that the majority (51%) are not taking antibiotics and, 92% of those on antibiotics are on oral antibiotics. https://peerj.com/articles/322/ Asserting that treating physicians are prescribing “dangerous and ineffective therapies” and “are exactly the doctors the government should be investigating” is a fear-mongering tactic without support. The FDA has approved the safety of these antibiotics. The efficacy of antibiotics was confirmed in two of the four NIH-funded trials and many observational trials. http://tinyurl.com/qdm3dfa
Physicians, unlike IDSA researchers, are charged with using the best evidence available and working to restore the health of patients who are severely ill. As Dr. Deborah Zarin, director of clinicaltrials.gov puts it http://tinyurl.com/oj65x4c :
Clinical decisions are driven by the current reality. You can’t say to someone who has a medical need right then and there, “Hold on we’ll do more clinical trials and get back to you in two years.“ You have to make decisions based on the best information available.
The author gets just about every fact in the article wrong in a highly biased fashion. We believe this article will cause incalculable harm to already suffering patients. Although the article mentions LymeDisease.org, the author did not bother to contact us. Slate should set the record straight and provide a patient-centered article in response.
Sincerely,
Lorraine Johnson, JD, MBA
Executive Director
LymeDisease.org
Click here to read the Slate article.|
A pdf of LDo’s letter to Slate is here.
The LYME POLICY WONK blog is written by Lorraine Johnson, JD, MBA, who is the Chief Executive Officer of LymeDisease.org, formerly CALDA. Contact her at lbjohnson@lymedisease.org. Follow her on Twitter: @lymepolicywonk.
Thank you !!
I thank Lorraine also…very well written in support of those suffering from Lyme Disease.
Lyme patients, protect your right to effective medical care and stand up to the type prejudice and journalistic malfeasance found in this article.
Please, join our campaign to ask Governor Cuomo to “Sign the Lyme Disease Patient Rights/Doctor Protection Bill.”
NYS residents, please use: http://www.Cuomo123.com
Residents of other states can use the sample letter from the previous link and the contact form here: http://www.governor.ny.gov/contact
Add at least one sentence of your own here, such as:
I am concerned because I (my child, or friend) have Lyme disease, or I was turned away by (how many) doctors, or I waited (how many) months for an appointment, or I had to travel (how) far (or out of state) to get to a doctor, or any other hardships you can think of a result of so few doctors being willing to risk their licenses to treat Lyme disease.
Let’s get 10,000 emails to Cuomo! For more campaign info including a flyer, sample email to friends & family, bill info, FAQ, and NY Voices of Lyme facebook link: http://www.nyclymesupport.org/cuomo.htm
This brought tears to my eyes! Beautiful. Thank you, Lorraine.
Slate obviously rushed this article..not getting the facts right. It’s easy to type an opinion when one has no clue of the facts. As a woman who has raised 3 children alone…held a 6 figure income for 15 years…owned a home and gardened as a hobby. I am hear to tell you – I was NOT cured after a month of IV antibiotics and I have had Lyme since 1991. The initial oral antibotics obviously did not cure my first diagnosis in 1991. I went about a very healthy life until a bad economy and the death of loved one in 2010..in which the stress brought out the Lyme in my body with a vengeance! I can not tell you in this short email the many symptoms — I have had through the years (not realizing it was still there after oral antibiotics) nor is there room to list the many faucets of this illness my body has succumbed to since it is now a Chronic illness. We desperately need this bill signed-I am still able to work- with great effort–however, for how long-If I am not treated correctly….I am going to be another statistic on the disability line needing hand outs from the State because my HANDS DO NOT WORK good enough to work a job myself. Julia Turner perhaps I can work for you as a researcher- I can sit in a wheel chair and use one finger to peck at the keys on the computer with my brain fog and write articles like the one you just did. One that shows how you have no clue what you are talking about. Please – do your research or mind your own business –if I were your employer I would keep you in the back office shredding the garbage articles like the one you just wrote.
Thank you for such a well expressed and thoroughly researched response to the misinformed and nasty Salon piece by someone who knows little or anything about the epidemic of tick-borne and the real suffering of hundreds of thousands of Americans. Shame on Salon for publishing this piece without any fact checking. And Brava to you, Ms Johnson. Brava.
I read both articles and have come to the conclusion that Brian Palmer’s skills as an investigative medical reporter is far below lacking in Lyme Disease facts. It is sad to see the people who suffer greatly, suffer from the words of a self serving reporter who does nothing to bring this issue to help the sufferers. He obviously had no knowledge of Lyme disease going into his article and as he reports the facts and continuously gets everything garbled and backwards leads me to think that he is being given literature from a higher calling such as the IDSA, Insurers and Pharmas that control this countries medical imbalance lyme related issues. As a Lyme Advocate and patient, It upsets me at what Slate has let get through there editors with such slander and misrepresentation as Palmer has done to the American people, not just the lyme community alone.
Thank you, Lorraine Johnson, for firing back at Brian Palmer’s total ignorance about Lyme disease. It made me wonder which interest group he’s lobbying for. My question is: what can we do to mitigate the damage Palmer’s article has done to those of us who struggle in our lives to recover from this debilitating disease?
Perfect, thank you for writing on behalf of many.
Advocates have submitted opposing pieces to the Slate. Concerned readers, please write to the editors to demand an apology and ask that the Slate publish a patient-centered article.
Slate Editorial staff:
Laura Helmuth
Science & Health Editor
laura.helmuth@slate.com
Julia Turner
Editor in Chief
juliaturneratslate@gmail.com
Jacob Weisberg
Chairman and Editor in Chief of the Slate Group
slateoffice@slate.com
Thank you so so much or taking the time to write this brilliant article and rebuke that idiot… You’ve helped so many people!
Thank you for your detailed and direct response to what was obviously one of the worst pieces of ‘journalism’ to come along in a long time. As a Lymie I actually found myself enraged and demoralized by Barton’s piece at Slate. Shoddy, mean spirited, chock full of Ad Hom attacks and simply without merit.
Thank you for getting this response out!
Great job showing the incompetence of this salon writer. The only way he could possibly write an accurate portrayal of what a Lyme patient goes thru would be if he suddenly got Lyme Disease. Then he would be writing the opposite. As a Nurse & Lyme patient I have been an IV Nurse to many Lyme patients and I can tell you that the only time an IDSA doctor will order more then 28 days of antibiotics is if the patient is a family member or friend. Then they quietly treat those patients differently. I’ve seen it many times. Especially the IDSA experts in Boston. They think no one will notice.
Here’s another article that needs to be discredited: http://www.forbes.com/sites/stevensalzberg/2014/12/15/ny-governor-must-decide-today-on-allowing-unproven-lyme-disease-treatments/
It should be obvious to readers that Lorraine Johnson’s excellent post (lymedisease.org) is the one that states facts, backed by links to support those facts.
Congratulations, Lorraine! You are doing amazing work!
My hope is that readers will realize by the very tone of the Slate article that it is not at all fact-based, and shows the extreme bias of the writer. Slate should carefully consider whether Palmer deserves to be writing for Slate, particularly with a mission to report on science.
As a psychotherapist I have seen the suffering of chronic Lyme patients over the past 20+ years, witnessing not only their suffering, but that of their families, as well. Readers who believe Palmer will likely judge those who are chronically ill with Lyme, further isolating those patients, rather than providing them with the support and understanding that they need, and that they deserve.
As for his allegation that Lyme is easy to treat, most of my clients started out with doctors who held that position. They had short courses of antibiotics that were not at all effective. Some adults tell me of their long history of Lyme, back into childhood, with a week or two of treatment each time they were diagnosed, leading to their chronic, debilitating, painful chronic disease. For many patients, the IDSA treatments, filtering down to primary care doctors, simply did not work. Where is the IDSA, or the doctors who follow those guidelines, when the patient is no longer able to go to school or work? Many who believe that the IDSA guidelines are the only true guidelines for treatment then decide that the suffering patients must be mentally ill. Some even say, “I don’t know what it is, but it’s NOT LYME”.
Rather than trashing the Lyme Disease Association and Lymedisease.org, Palmer should have interviewed Pat Smith and Lorraine Johnson, or even checked out their websites, to see what it is that they are doing. I am very grateful for the fine work that they and other Lyme advocacy organizations do to support patients and doctors amidst the massive denial of Lyme perpetrated by the IDSA. I am also grateful to ILADS for the incredible work that they have done in the development of the guidelines. They are an organization dedicated to professional Lyme education, and support of science.
Sandy Berenbaum, LCSW, BCD
lymefamilies.com
Excellent!!
Well said and thank you!
This is my tenth year with chronic Lyme! I had to retire early when I was 58 because I’m getting older and was still fighting Lyme; now I’m 61.
Lorraine, thank you once again for your tireless efforts in advocating for the Lyme community.Your passion and dedication are admired and have not gone unnoticed.
There are so many children and adults undiagnosed or misdiagnosed for years. My daughter is one o father. She is now 19 and went misdiagnosed for 13 of the 15 years she’s had Lyme and co-infections. After seeing one specialist after the other, we found our LLMD in 2012. Orals did not work. It was too late for that, as she had encephalopathy of the brain with severe hypometabolism (as seen in Alzheimer’s patients) and hypoperfusion (lack of capillary blood flow to the brain) in all her lobes, basal ganglia and cerebellum. The sole reason she was put on IV ceftriaxone was to reverse the damage to her brain. It might now be at the point where it is irreversible. Our insurance company paid for 90 days of treatment, despite folowing the CDC/IDSA in their clinical bulletin, since she has encephalopathy. Although they initially approved it for six months, they only paid 90 days, since we started three onths late due to my own health issues. We assumed the six months would start when we began treatment, but unfortunately, it did not.
I am on my sixth appeal to get them to pay those three months and the past five months we have had to self-pay. My daughter will stay on the medication until the encephalopathy is reversed, if it still can be.
We have been given a second outside review. We have asked each and every time not to have an ID dr review the appeal, but to no avail. The last appeal was reviewed by an ID dr who, in my opinion, did not read the introductory five page letter I wrote and the additional 200+ pages of medical information, articles and abstracts. It was an abomination. He saw that we used the top pediatric Lyme dr in the country, and we’ve been told by legal professionals that when they see his name or other LLMDs, it is an instant denial. His conclusion was that the medication she is on is harming her, because she doesn’t have Lyme, nor did she ever, let alone have any persistent infection. He ignored all the imaging studies, the Quest specialty lab results (my daughter never had 5 IgG bqnds but had 3-5 IgM bands, Lyme specific) and only zeroed in on IgeneX’s Babesia test which he claimed produced false positives, so therefore, she couldn’t have Lyme. I suffered second hand embarrassment ep reading his rationale. He didn’t understand the eight diagnoses our lLMD provided ehich any doctor familiar with Lyme would have.
I now know what PTSD is like, because it brought me right back to the years of misdiagnoses by ID drs and specialists telling me everything from my daughter needs hip and knee surgery, to putting her in a “boot” for swollen feet and ankles, to to saying it was depression, to having an immunologist giving her two flu shots and two pneumonia shots when she was only eight years old (I believe this further compromised her immune system, and I didn’t know children under 11 should never have pneumonia shots unless they are critically ill, let alone have two back to back). I was in a dazed and confused state not knowing who to trust or believe. I was told she was depressed because ai was always taking her to doctors for her myriad of textbook perfect Lyme symptoms. She had two tick bites ai knew of, so there was no doubt in my mind, and she had a positive blood culture test through Advanced labs. She was told she faked her neuropsyche testing, because it was “worse than an Alzheimer’s patient.” This was before she had the PET scan, PET MRI and brain spect which showed that the hypometabolism she has in her brain is similar to what Alzheimer and dementia patients have). The big teaching hospital we went to said they had never seen a brain that bad on a teenager, so they scanned her body for cancer. That’s how concerned they were. They also said the prior neurologist was negligent in not doing any imaging studies upon my daughter after the failed neuropsyche test.
The encephalopathy was corroborated by a REAL neuropsyche test (12 hours) done by an ILADS psychologist. My daughter only has 23% processing ability and 37% working memory amongst other cognitive issues. The list of symptoms is endless, but after deferring college for a year, she started this past fall and took her IV with her. She is one amazing child if I must say so…despite feeling so ill for all those years, she never let this disease beat her. She went blind in one eye three times and her skin semsitivity is through the roof…there’s just so much more, but when she told me she was too epweakmtomgo to college last year, I knew I had to fight to get this medication, and I did with and without the insurance’s help.
Of course, self-payimg has become impossible for us, and we are fighting foreclosure from the thousands of dollars in medical bills over the years. Her fortitude and tenacity encourage me to fight the fight. I will never stop appealing. Bing on the ceftriaxone has also started to remit her Hashimoto’s. As our LLMD told us, once the Lyme is treated, the hashi’s will remit. Her thyroid numbers are normal and her anti-TPOAbs have dropped from 650-73 as of last month after eight months on IV. We could never get them lower than the 400’s in all these years. Lyme is multi-systemic which is what the ID doctors fail to understand. An ID dr cannot put the pieces of this complicated disease together. They don’t understand what the Cunningham panel is, the Lyme/mold gene connection or the mother of all mothers, the MTH FR gene and its effect on detoxing.
I have spoken with our AG’s office, and if our company owned the policy, it would be easy to overturn the insurance company’s decision. Our AG, now Senator, fought hard in 2008 to prove wrong doing by the IDSA, and I believe that the more states that fight for the right to dispense long-term antibiotics and protect the LLMDs who do so, there will be more ignorant, outrageous and repugnant articles like this one written by journalists who, in my opinion, are paid shills for the IDSA. What other reason would anyone do this?
If you recall a few months ago, a similar article was written when Lyme activists protested outside the NY Times buliding. The article was written by a doctor who claimed he had had Lyme and treated Lyme patients very easily. Once I confronted him and explained how Lyme causes encephalopathy and Lyme carditis, amongst other serious organ damage, he apologized and changed his tune. However,mthe article he wrote remained unchanged.
Those whose last chance to regain their life and brain is contingent on being on IV antibiotics, need this point made clear to the average reader who doesn’t understand the depths of this insidious disease. I know when I first moved to my state, which is Lyme endemic, I, too, thought a simple round of antibiotics would cure you. Boy was I ever naive, and I wished someone had warned me.nthis is why I advocate whenever and wherever I can.
I submitted a Letter to the Editor at Slate and left a comment in the section under the article. I do hope Slate either retracts the article or let’s an LLMD (or yourself) publish a rebuttal.
Thank you for again for your comtinuous advocacy of Lyme patients and families.
Well stated. Kudos to you and all you do! I was mis-diagnosed 50+ years with a history of over 100 tick infestations since the age of 5. I have late stage Neurological Lyme that has ravaged all my joints, resulting in 16 surgeries, and heading for the 8th total joint replacement in January 2015. I live with unrelenting moderate to severe neuropathic and joint pain everyday.
My entire family has Lyme and many other vector borne diseases, to include our 9 year old grandson.
This is a health care disaster that calls each one of us to do our part. Thank you for doing yours with due diligence!
Thank you so much for all your efforts directed to making things better for those of us who currently suffer from Lyme or have suffered both physically and financially in the past froth effects of this disease.