The contentiousness of the infectious bacterial disease/syndrome, Lyme disease, unlike other infectious diseases, has been a source of conflict between the “establishment” medical community and Lyme disease advocates and sufferers for decades. With the exception of vaccines, no other medical issue brings out the most emotion and controversy.
On Saturday, just days before the planned protest by the Lyme disease advocacy group, The Mayday Project, at the headquarters of the Infectious Diseases Society of America (IDSA), in the publication Morning Call, Johns Hopkins Hospital infectious disease specialist Dr. Paul Auwaerter made a comparison surely to trigger more controversy and reaction.
Auwaerter reportedly likened Lyme disease to the John F. Kennedy assassination and global warming, that lend themselves to conspiracy theories. “When you don’t understand something, you try to insert a framework that makes sense to you,” he said.
This quickly drew a response from Mayday Project co-founder, Josh Cutler who said the problem doesn’t lie with patients but rather with denialist physicians, such as Auwaerter, who refuse to take into consideration a large body of science-based evidence for the existence of chronic Lyme disease.
“When is a Johns Hopkins School of Medicine researcher no longer competent to conduct research and treat patients?” asks Cutler, who has been battling Lyme disease for more than nine years. “When he ceases to have an open, scientific mind and starts to sling mud at the patients he has sworn to care for.”
According to Cutler, “Dr. Auwaerter and some of his IDSA colleagues don’t understand Lyme and its co-infections, so they try to insert a framework that makes sense to them. Other IDSA members are protecting conflicts of interest and stand to gain financially by producing guidelines that deprive chronically ill patients access to medically necessary treatment. Rather than acknowledging the epidemic of chronic Lyme, these physicians denigrate patients who are suffering and speaking out for their rights.”
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“What’s even more disturbing,” says Cutler, “is that Dr. Auwaerter is one of the physicians sitting on the panel tasked with updating the IDSA guidelines for the treatment of Lyme disease. IDSA continues to wage a campaign of denial about chronic Lyme in the face of growing scientific evidence that a very real problem exists. How many more people have to fall ill and die before IDSA wakes up and faces the epidemic at hand?”
Despite his comment, Dr. Auwaerter says he does sympathize with the Lyme sufferers: “It’s extremely frustrating to have problems your doctor cannot solve,” he said. “People are looking for answers. People don’t like unknowns.”
Cutler, and Mayday co-founder Allison Caruana, called for Dr. Auwaerter’s removal from the 2015 IDSA Guidelines panel, along with the removal of the panelists who co-authored or reviewed the 2006 guidelines; guidelines which deny the existence of persistent infection (chronic Lyme) after patients receive the IDSA recommended 2-4 week course of antibiotics.
The Mayday Project is holding a protest and vigil at IDSA headquarters April 30 through May 1 to call for the removal of the panelists with the most serious conflicts of interest and for compliance with the Institute of Medicine (IOM) standards for trustworthy guidelines.
Myself and many of my family members have been battling the effects of Lyme, Insurance and the excuses and generic tests of this disease. We need sufficient testing to start with, and medical people and insurance to recognize the devastating effects of this long lasting disease. People are wrenched with many medical bills because of the ignorant realism of Lyme.
We’ll be at the protest in spirit since we aren’t able to attend. Too many people are suffering and after 20 dr visits being told the symptoms are all in their heads. We say NO MORE!!!
We had Lyme for more than 8 yrs misdiagnosed as so many other things, all doctors want to do is throw more medication in your direction! We finally had to go to a naturopathic doctor and guess what? We were diagnosed and started treatment in less than 30 min. So why can’t the regular medical community be diligent?
If you do find any attached ticks, I heard about this instant tick test, Lymenator for people and Lymealyzer for pets/animals that can detect if the tick carries the Lyme bacteria in about 10 min. I’d rather know right away if I’m ‘at risk’, that way I don’t have to listen to a doctor tell me to ‘wait for symptoms’. Early detection is key.
We, as patients, shouldn’t accept sub-par medical treatment!!!!
We’ll be at the protest in spirit since we’re not able to make it down to Arlington. Both myself and my husband had Lyme for more than 8 yrs misdiagnosed as other things with one doctor after another trying to shove more medication down your throat without looking for the root cause of the symptoms. It wasn’t until we went to a naturopathic doctor where guess what? Within 30 min. she was able to diagnose the Lyme and begin treatment. What’s the issue in the traditional medical industry? Why do they want to keep people sick?
If you do find a tick attached to yourself or pet, Lymenator or Lymealyzer are instant tick tests where the user can test the tick themselves and within 10 min know if the tick carries the Lyme bacteria. A positive test doesn’t mean you have Lyme, but you’ve potentially been exposed to the bacteria and are ‘at risk’. Early detection SHOULD mean early treatment.
Please keep in mind there are some common misnomers out there: 1) a tick DOES NOT have to be attached for 24-72 hrs before infection – that’s just false; and 2) it’s not only the deer tick that can cause infection – also the dog tick, wood tick, mosquitoes, etc. can carry the bacteria.
The funny thing is these doctors say that Lyme lends itself to conspiracies… How about the 1989 IDSA journal Reviews of Infectious diseases vol II supplement 6 sept- oct?? This journal is all about clinical similarities with syphillis, dormant cycles, 15-20 yr incubation, chronic Lyme, 50% treatment failure with reccomend end antibiotics etc. All someone has to do is look at what Allen Steere, Wormser, Fish, Shapiro etc. has published in the past REGARDING CHRONIC INFECTIONS to see that SOMETHING weird is going on. Tuskeggee proves without a doubt that the cdc and NIH are not 100% honest 100% of the time. Maybe aurwater lives in a world of puppy dogs and rainbows where governmental institutions never have conflicts of interest or absurd political justifications but the rest of us objective thinkers do NOT. In addition Lyme disease is persistent in EVERY animal model including the recent study by NIH on rhesus monkey done by embers and Barthold, we are talking about “chicken came before the egg” common sense taxonomy of borrelia as persisters that for one reason or another isn’t being applied! Oh and on my last note… How about ALLEN STEERES article in NEJM entitled Chronic Neurological Manifestations of Lyme Disease published back in 1990 nov 2?? Auarwater do you really think we are THAT stupid??