At the January 2013 monthly meeting, NESACS hosted Dr. Allen Steere, the world’s foremost expert on Lyme disease. Since Lyme disease was identified over thirty years ago Dr. Steere has embarked on an “odyssey” to find its cause and cure. A NY Times article from 2001 about Dr. Steere can be found here. Currently acceptable diagnosis and treatment of Lyme disease can be found on PubMed .
Lyme disease, while only recently tracked by the CDC , does not seem like a controversial subject. Dr. Steere, a reserved physician and researcher, presented his findings articulately and concisely. But twenty minutes into the presentation, it became clear that some people vehemently disagreed with his conclusions. From the back of the room, Mr. Timothy Grey claimed the US government intentionally infected ticks with recombinant pathogens, implying that citizens had been intentionally exposed. Before being escorted out of the room, Mr. Grey leveled a disturbing accusation: “Allen Steere’s papers killed my sister . . . her blood is on your hands . . . You’re a monster and I’ll make it my life’s work to see you in prison.” Mr. Grey was swiftly escorted out of the room, defiantly protesting his removal down the corridor and to the elevator.
Myself and other participants in the forum exchanged anxious glances. Did this man intend to physically harm anyone? Would he return? He was sitting with others at the back of the room- were they also dissenters? What were their intentions? Should the meeting proceed?
After a few moments of tense and awkward silence, Dr. Steere briefly explained that Mr. Grey was part of a “strong Lyme disease counter culture that disagrees with everything about mainstream medicine.” Mr. Grey is also a filmmaker who created a documentary in 2009, “Under the Eightball,” which purports to connect US biowarfare programs to Lyme disease. The film also chronicled his younger sister’s struggle with Lyme disease, which possibly caused her death. The documentary is only available for purchase through its facebook site, but you can read a movie review that describes it in more detail. Of course, this information was unknown to me at the time of the meeting; I subsequently spent several hours on the internet researching both Dr. Steere and Mr. Grey. During the course of my inquiries I also discovered that Mr. Grey had gained access to Dr. Steere’s office in 2009 and surreptitiously filmed the encounter. You can watch that video on youtube.
It is clear that Mr. Grey has behaved unethically. Is it any wonder that Dr. Steere has hired bodyguards in the past? At the meeting, did anyone notice that NESACS did not advertise that “the public is welcome” for Dr. Steere’s presentation? I cannot imagine the frustration and fear of being stalked by someone who clearly wants to destroy my personal and professional reputation.
Unfortunately, confrontation has displaced conversation in public scientific discourse. Personhood, climate change, and vaccinations are all legislative issues that have significant ethical implications. However, counter-culture dissenters receive as much media attention as the cut-and-dry scientific mainstream. Scientists are hindered by negative stereotypes and poor PR. The result is a public that does not believe that truth in science is dictated by data, but instead determined by righteous fervor. This misguided notion benefits no one in the long run.
At the end of Dr. Steere’s presentation, which concluded without incident, the audience was invited to ask questions. Unsurprisingly, no one inquired about alternative therapies for Lyme disease or government-sanctioned experiments performed on deer ticks. I must admit, though, Mr. Grey piqued my curiosity. Maybe I should have had a conversation with Dr. Steere about it.
I’d like to send you a copy of Under The Eightball. My email address is tebo_tc@hotmail.com let me know where you would like it sent.
-Timothy Grey
Thank you, Mr. Grey.
READ: Author – Johanna Ferguson’s article in the American Journal of Law & Medicine, titled ” Cure Unwanted? Exploring the Chronic Lyme Disease Controversy and Why Conflicts of Interest in Practice Guidelines May Be Guiding Us Down the Wrong Path.”
http://business.highbeam.com/42/article-1G1-283022008/cure-unwanted-exploring-chronic-lyme-disease-controversy
http://www.publichealth.va.gov/exposures/gulfwar/infectious_diseases.asp
http://www.plosone.org/article/info:doi/10.1371/journal.pone.0029914
KR Fletcher:
If you really dug into the subject of lyme disease with a open mind you might have joined Timothy Grey in his endeavour. There are thousands of people suffering from a disease that could have been easily cured or better yet prevented if information that is due to the citizens of this country had been given to them. I speak from passion – not anger- I am way past that although somtimes in the eyes of my kids are feel a little ping of that amosity but I squash it knowing it will get me nowhere. Fact is the test that Dr. Steere and IDSA profilerates is the best is wrong more than it is right. That is why some states have made it mandatory that doctors must give patients a disclosure about the tests. Another fact is where the bacteria is considered to be a risk. I am in Texas where Texas says bite of a tick, FLEA, AND POSSIBLE OTHER BITING INSECTS. I went a step further and talked to Texas health Department. They claim in 1990′s fleas were tested in 10 counties in Texas and found to harbor the bacteria in their gut. You can personally talk to Eric Fonken about this, Five ticks from our home (just the ones I sent in) were tested by A&M and found to be deer ticks and harbor the borrelia in them. This can be verified as well. CDC has Texas as a no risk state. REALLY? I dont believe I am the only magical one who has infected ticks on my property. How about the quarantined land down in south Texas because of Cattle tick fever. There are validated studies out there that prove the velocity of borrelia burgdorferi – afterall its cousin causes syphillis. They are a bad bunch of criminals.
One must intelligently ask why is this the most debated medical condition in history if its such a non-existent problem. Dr. Steere claims he discovered it on his web site when actually it was none other but Willy Burgdorferi. You might want to look at his comments on the movie “UNDER OUR SKIN”. This is a problem bigger than anyone can imagine. Ignoring it will not make it go away. Why would Dr. Steere spend 30 years of his life investigating an illness that the IDSA proposes will go away in 3 weeks with antibiotics? That would be like me spending 30 years investigating the common cold. I am astounded that 30 something years have passed since Polly Murray questioned the cluster of arthritis and this is all we have to show for it?
You make a lot of great points.
First, the government does determine the standard of care for many illnesses, such as cancer. It is very difficult to change the minimal standard of care, even when new evidence supports alternative methods. Dr. Thomas Seyfried at Boston College would like to treat cancer as a metabolic disease and discontinue use of chemo/radiation, but he cannot perform trials on people in the US to prove his theory because the minimum standard of care mandates such treatments. It might be a similar situation with lyme disease.
At the January talk, Dr. Steere mentioned a genetic component to lyme disease (like leprosy); both the infectious pathogen and the infected person may need a particular genetic disposition to develop lyme disease. Perhaps that’s why not everyone develops the disease.
And finally, it is very common for scientists to spend 30 years studying the same thing. In biochemical research, a person may study a particular molecule in a metabolic pathway for their entire career, spanning 30-40 years. So yes, Dr. Steere would probably study lyme disease for decades, but that’s not unusual or a sign of unethical research practices.
I appreciate your reply. It seems that the people I have spoken to that have chronic lyme – they never saw the tick nor the bite – leading me to personally believe that it is the amount of time that the bacteria has had to disseminate in the body along with the co-infections that are present that causes the chronic lyme. It would appear that the bacteria has already buried itself deep in the body making it hard for antibiotics to mount any type of response. I wish someone would just acknowledge it for what it is – a whole United States problem and not just the northeast. Then the citizens in the south could take precautions. I am a dog rescuer and rescued lots of animals – one in particular right before I got sick was covered in ticks. I never thought a thing about it as it was’nt talked about here in Texas. I would agree that progress in research is slow but there is valid medical documentation being ignored at the expense of people’s lives and quality of life at best. I also feel that alternative motives also is the catalyst to prevent furture positive growth. There are too many documented medical studies that prove the velocity and staying power of this bacteria. How can these continue to be denied like they dont exist. Something is definitely wrong with the picture?
A link to a map published by the CDC extrapolating the prevalence of Lyme disease in the US was included in the original post.
Since most ticks are very small, it’s likely people don’t notice them. It requires at least a day of exposure for the bacteria to transfer from tick to person.
There are also many autoimmune problems that are poorly understood, like lupus or chronic fatigue syndrome, that share similar pathologies. Does a patient really have Lyme disease, or it is something else that is not fully understood? Antibiotics are another issue. Is their effectiveness really well understood? After all, they’ve been used for a relatively short time. In 60 years, a large number of bacteria are already resistant to normal antibacterial treatment. The treatment of any disease is an extemely complex problem that cannot be solved on demand.
I strongly disagree with the assertion that the medical establishment is ignoring the problem (if there is one) and is directly contributing to people’s demise. It’s a broad and unjustified statement. It’s like claiming that all scientists believe in climate change, not because of data, but because of a political agenda. Similarly, there is no grand conspiracy among doctors to offer substandard medical care.
Here is Wormser ( one of the Lyme researchers and Steere’s pee)r stating OspA, either from vaccination or by Borrelia infection is Immunosuppressive. http://www.ncbi.nlm.nih.gov/pubmed/10865170 He still is not aware of how OspA reactivates latent Herpes infections, namely EBV and HHV6. reactivated Herpes infections inhibit cellular apoptosis in EBV infected cells leading to a diagnosis of Leukemia, Lymphoma or B cell cancers.
For continued reading on the subject;
http://www.law.gonzaga.edu/law-review/files/2011/01/Asher.pdf
In my opinion Timothy Grey is speaking more truth than Dr. Steere in respect to the overall issues pertaining to Lyme Disease. In-fact the only credibility that Steere has over Timothy is that he just happened to identify the connection between ticks and an unknown illness. Beyond that, his research has been nothing short of useless. Ask Dr. Burgdorfer who discovered the pathogen (Borrelia Burdorferi) the cause of Lyme Disease, what he thinks about researchers like Steere who deny people who question the science and evidence. Ask him whether he thinks patients are lying about the persistence of the bacterium in-spite of what Dr. Allen Steere says. Here is what Dr. Burdorferi says:
“Dr. Burgdorfer: I am a believer in persistent infections because people suffering with Lyme disease, ten or fifteen or twenty years later, get sick [again]. Because it appears that this organism has the ability to be sequestered in tissues and [it] is possible that it could reappear, bringing back the clinical manifestations it caused in the first place. These are controversial issues for microbiologists, as well as the physicians who are asked to treat patients. The controversy in Lyme disease research is a shameful affair. And I say that because the whole thing is politically tainted. Money goes to people who have, for the past 30 years, produced the same thing—nothing. Serology has to be started from scratch with people who don’t know beforehand the results of their research. There are lots of physicians around who wouldn’t touch a Lyme disease patient. They tell the nurse, “You tell the guy to get out of here. I don’t want to see him.” That is shameful. So [this] shame includes physicians who don’t even have the courage to tell a patient, “You have Lyme disease and I don’t know anything about it.”
When did Dr. Burgdorfer say this? Standard medical treatment may have changed since then. Most people are now aware of lyme disease and its prevalence.
I could be wrong but, I believe that quote by Dr. Burgdorfer is taken from the multi- award winning film, “Under Our Skin” by Open Eye Pictures – in the extras….
Willy Burgdorfer said this during an interview with producer of Under Our Skin
http://www.underourskin.com/news/lyme-discoverer-willy-burgdorfer-breaks-silence-heated-controversy
Under Our Skin was released in 2008. It is available on Hulu and Netflix. It is unclear to me (since I haven’t seen the film) whether Dr. Burgdorfer is directing the comments towards Dr. Steere specifically.
Highly recommend watching the film KRFletcher….possibly he is directing the comments at the entire medical community who denies Lyme disease; who denies proper treatment for Lyme patients; who denies chronic infections of said patients….So much is still unclear and lacking in research with regards to patients with multiple tick-borne infections. I think that plays a larger role in the chronic infections and causes so many debilitating and confusing symptoms for patients and the physicians who actually may be trying to help…
The CDC map is wrong. Call and talk to Professor Maria Esteve Gassent at A&M. Texas has a problem and CDC is making nearly impossible to change the map. I cannot believe that I am the only one in Texas who had 4 out of 4 ticks that had the bacteria. Why does it seem that offering the public the information is a big request. What harm would it do to give them the information? I am sorry I dont quite get that.