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Neuroscience Ph.D. ************************** Passionate about science education and outreach; enjoys a great discussion about the intersection of science and everyday life *************************** Currently a biomedical researcher at a Harvard University hospital - Areas of expertise: endocrinology, appetite and metabolism, neuroscience, biochemistry, molecular biology *************************** Areas of interest: science and art, science and society, science policy, books/films/music, reading great magazines, travel, learning new things and sparking new ideas, gardening/nature *** All Content Copyright Aliquot - do not reproduce without express permission ***

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OCTOBER 20, 2009 4:59PM

Luna-Tick or Ticked off? A scientist's review of Eightball.

Rate: 1 Flag

The makers of the lyme-disease documentary 'Under the Eightball' held its first screening outside of Michigan last week at the Brattle Theatre in Cambridge, MA. 

This screening was sparsely attended, perhaps due to limited  advertisement of the engagement.  The film makers, Timothy Grey and Breanne Russell,  were in attendance and introduced the movie, adding that they had a video camera if anyone wanted to ask any clarifying questions in film afterward. 

Note: This never happened and I did have some clarifying questions to ask.  I've emailed these to the film makers, who responded that they were happy to field my questions, but although they knew this article would be posted today, I've received no response.  I will include my questions to them as a comment on this post - and if/when answers are received, I'll post them here also.

 Timothy Grey's sister Lori Hall Steele (a journalist, see: http://www.lorihallsteele.com/bio.php) underwent a medical ordeal that is all too common, and very scary.  What turned out to have been lyme disease (as suspected by Lori and her family, and confirmed only by a post-mortem analysis), was repeatedly misdiagnosed and therefore mistreated.  Lori ended up dying from a disease that can be treated with antibiotics.  Her doctors insisted she had ALS (Lou Gehrig's disease, http://www.alsa.org/), a disease not treatable with antibiotics or any other means.

 Grey documented much of his sister's medical drama, including hospital visits and her family's attempts to determine what had made her so mysteriously ill.  Their search brought them from potential environmental causes outside the home (polluted soil and waterways in his sister's Michigan neighborhood) to potential environmental causes inside the home (harmful mold spores). 

Grey also spoke with many doctors and scientists who explained the difficulty in diagnosing lyme disease - the western blot (a way to determine the presence or absense of certain proteins, by 'blotting' them with antibodies that recognize them and can light up when exposed to film - see this site for a visual aid: http://www.bseinquiry.gov.uk/report/volume2/fig1_8.htm) turned out to lack sensitivity and often provided false negative results, as happened in Steele's case. 

In fact, the CDC does warn against tests that lack sensitivity, and recommends an ELISA (a similar assay to a western blot in that it recognizes proteins using antibodies) for a definitive diagnosis (http://www.cdc.gov/ncidod/dvbid/lyme/ld_humandisease_diagnosis.htm).  Just last year, a publication testing various ELISA and western blotting methods of diagnosis for lyme disease, found great variability (Prospective Study of Serologic Tests for Lyme Disease, Steere et al. Clin Infect Dis. 2008).

 After Steele's death, captured in a moving tribute during the middle of Eightball, Grey set out on a mission to determine how and why his sister died from lyme disease.  And this is when the movie took a turn - the sadness and anger stemming from Steele's death seemed to have been funneled into a vortex of scientific truths and conspiracy theories.  As a scientist, whenever I see a mash of sound-bite clips from people with unexplained degrees (Ph.D.?  In what?  from where?  How is this person a qualified expert?  Were the answers taken out of context?  Where is the proof for the claims?) - I begin to worry that the facts are being clouded by emotion.

However, some facts were there, despite being interspersed with conjecture and speculation.  In the 1970's around Lyme, CT (the town is the namesake for the disease) a collection of arthritis-type illnesses got the attention of scientists after alarm was raised by two concerned citizens, Polly Murray and Judith Mensch.  It wasn't until 1981 that the disease was blamed on transmission from ticks of a spirochete bacterium later named Borrelia burgdorferi,  after Dr. Burgdorfer (of Rocky Mountain Laboratories) who with Dr. Steere of Yale pinpointed the cause of lyme disease. 

Grey then made the connection  between the disease outbreak in Lyme, CT and its close proximity to Plum Island, a federal animal disease laboratory known for research on biological weapons to be used against the food supply - and also known for its lack of safety and containment measures.  In 2004, the book Lab 257, written by Michael Carroll (a former Wall Street attorney) garnered media coverage for its similar claim that  lyme disease was the result of an infected tick escaping from Plum Island laboratories and infecting a deer on the island who then swam to Lyme, CT and infected humans there.

 This story is refuted by federal accounts of activity on Plum Island.  For example, see: http://www.dhs.gov/files/labs/editorial_0902.shtm, which includes this clear statement: Plum Island laboratory "Does not and has not performed research on Lyme disease".

 However, what appears to be the main resource for Grey's claims in Eightball is www.lymecryme.com, and an 'expose' written by PatriciaA.  Doyle, Ph.D. (not to be confused with legitimate parasitologist, Patricia S. Doyle whose academic website offers no mention of lyme disease: http://pathology.ucsf.edu/mckerrow/pdoyle.html).  This document attempts to connect research on Plum Island to an outbreak of lyme disease in CT, but it does so very weakly.  So called evidence of tick research on the island is not connected to lyme disease - so if ticks were being used on Plum Island, that does not provide evidence that lyme disease was being studied there as well, or that lyme disease was put into ticks who then escaped the facility - there are a lot of gaps in the logic of this argument, and a lot of missing data.

 Indeed, new research out of the University of Bath show that the lyme disease bacterium originated in Europe before the ice age - and new cases of lyme disease are continuing to increase in Europe as they are in the U.S.  This piece of information is conveniently left out of any analysis of Plum Island's role.

Perhaps some new piece of information will come out to shed more light on a potential connection between Plum Island and lyme disease, but for now, the links are weak and purely correlative at best.  This appears to be a classic case of correlation being mistaken for causation - one of the most dangerous mistakes in science.  

As for Eightball's insinuation that the government would like to see lyme disease continue undiagnosed and untreated in order for scientists to study the mechanism of the illness - the lack of data make the assumptions seem like pure conspiracy theory.  The film makers cite the Tuskegee experiment as one example (of which admittedly and sadly there are many) of the government knowingly conducting (harmful) scientific experiments on the unwitting.  However, our government now uses this as a striking example of scientific misconduct and poor ethics (see: http://www.cdc.gov/tuskegee/timeline.htm).  There is no record of such experimentation in modern times, not to mention that the task of convincing doctors and medical professionals all over the world to partake in this clandestine operation seems like an insurmountable task.

 All in all, I do think Under the Eightball serves an important purpose, and I do recommend you go see it.  It starts many important conversations about science and medicine, many conversations that the film itself does not even continue (see my comments to the film makers below), but which you could continue in your own communities.  Issues of environmental pollutants, misdiagnosis and laboratory testing shortfalls, patient involvement in their own healthcare decisions, epidemiology, biological warfare testing, and many many others.

 Overall, I think Grey has revisited the lyme disease debate which has been out of the media for some time.  And hopefully out of this renewed interest and scientific progress, fewer people will be misdiagnosed and more lives will be saved.

 

 

 http://www.nlm.nih.gov/medlineplus/lymedisease.html

  http://www.undertheeightball.com

http://www.andalusiandogs.net

 

 Update: Nov. 20, 2009:

Please read the comments below, as Breanne Russell has kindly provided answers the the questions I posed previously.

 

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Email from the film makers in response to my request to ask clarifying questions:

Please email your qestions, we'd be happy to help.

-Timothy


My questions:

Great, thanks! I'll just reel them off in numbered order:

1. How did you conduct the initial research that led you to make the connection between Lyme disease and governmental research into biological weapons? What key pieces of evidence led the search in that direction?

2. I was unclear from the film exactly which line of evidence made a concrete link between Plum Island and Lyme Disease - I remember the Island housing both biological weapons testing and tick research...but don't recall a concrete link, although it is indeed alluded to.

3. When your sister was initially given a false negative diagnosis from the western blot, did you attempt to obtain the test from a different doctor or laboratory? (I remember you did interview a doctor who suggested these tests were often innaccurate, and even different laboratories may yield different results) Or did you determine this was just a sloppy test which did not pick up all forms of the disease?

4. During the mold part of the film, you seem to attempt to link high levels of unhealthy mold in your sister's house to potential alterations in her genetic susceptibility to either harbor Lyme disease or remain sick - but this is unclear. Also, you mention attempting to obtain a genetic test for this - but to my knowledge no tests (or indeed, little to no scientific knowledge) are known to determine how environmental factors influence our genetic susceptiptibility to disease. These may be epigenetic markers not easily measured in a hospital lab.

5. The mold scenario leads me to the pollution in your area of Michigan. While I appreciate that highlighting the pollution in your sister's community (or to stimulate your audience to be similarly proactive in determining the health of their communities) is important - I'm not clear how this links to your sister's Lyme disease, her misdiagnosis, or Plum Island. I kept waiting for the movie to revisit this issue - to tell us what happened to the soil samples, etc...

I think those are my main questions. I'd also appreciate a list of names and credentials of the people you interviewed in your film, so I can be accurate in my description of them.

Thanks very much for your help. You've clearly worked very hard to produce an interesting and thought-provoking film. I'm sure your sister would be very proud!

All best,
Aliquot
I never heard of this film before now. It sounds like somebody's sad attempt to assign blame for the death of a loved one. Unfortunatly, when such attempts degrade into blaming top secret government bioweapons research, well... most of us tend to tune out.
NerdMafia:
I agree completely...when the film makers transitioned to their conspiracy theory about half way through the film, I was completely distracted by the muddling of facts. Which is too bad because they 'had' me when it was a documentary about the struggle for a diagnosis. Many worthwhile themes persist in this film, which is why I think people should see it, but its too bad they butchered their own message by following emotion instead of fact.
Hi, I just sent an e-mail that perhaps can clear up any confusion surrounding these questions and clarify a few things that are incorrect in the article.

I would have posted my e-mail but there is limited space in these comment boxes so maybe you can post it.

Thanks, Breanne Russell
Breanne,
I have read your email but it appears that you have not really answered the questions I posed. I have responded to you to ask for additional clarifications, and when I receive your response I am happy to post it here so that readers also have your point of view.
Thanks,
A.
1. How did you conduct the initial research that led you to make the connection between Lyme disease and governmental research into biological weapons? What key pieces of evidence led the search in that direction?


Lori was a investigative journalist. When she was finally diagnosed with Lyme disease she began doing what journalists do, researching, researching, and more researching. She stumbled upon a hypothesis: that a strand of borrelia was studied at Plum Island during the hey day of Biological weapons research and manufacturing, and was released accidently into the population along Long Island, Montauk, and the coast of Connecticut, and more specifically Old Lyme. This strand of borrelia, years later would be named Borrelia burgdorferi. A book by Michael Caroll, "Lab 257", touches upon this hypothesis as well as exposes Plum Island's lack of security and deterioration of safety procedures, including an accidental release of Hoof and Mouth Disease. When you start adding all the pieces together, you start seeing a connection between Lyme Disease and Biological Weapons. Caroll spent 8 years investigating this connection which takes you back to the recruitment of Nazi Scientist into this country after World War II. Not only were the Nazi's developing BWs but Japan was investigating Spirochetal warfare, enhancing Leptospirosis to be used against their enemies and after the war, they were given complete immunity for the exchange of this type information.


2. I was unclear from the film exactly which line of evidence made a concrete link between Plum Island and Lyme Disease - I remember the Island housing both biological weapons testing and tick research...but don't recall a concrete link, although it is indeed alluded to.


We present our findings as if it were a court case. No, we have no smoking gun, which we have never claimed to have, no piece of paper that says, yes Lyme was weaponized at Plum Island. However, you have to remember that before it was named Borrelia burgdorferi in 1983, it had no official scientific name. It could have been named Agent X for all we know. We do have compelling evidence that when constructed points to Plum Island and the US Bio-Warfare Program. Yes, it has probably been around for centuries, much like anthrax, however, why during the rise of Biological Weapons research and manufacturing did it suddenly explode, infecting a small town's population so much that it finally was investigated? Why was Plum Island working with ticks? Yes, Plum Island officials decree they have never work with Borrelia burgdorferi. Sorry, but after my experience and the research I've done, I am not one to "take their word for it". Besides, it wouldn't be the first time our government decided to classify something in the name of national security or even destroy it to make it impossible to find that "smoking gun". 65 years ago no one would have believed our government was creating a bomb that could wipe out civilization, but we did, and dropped it on Japan. It is not unbelievable that Lyme disease came from Plum Island, in fact to me it seems more plausible than a random endemic in a town that just so happens to be 11 miles outside a biological research facility. Hopefully if enough attention is brought to this issue we can find a "smoking gun". We leave it up to our audience, after hearing our testimony and exploring our evidence, to come to their own verdict. Some may say "guilty". Some may not.


3. When your sister was initially given a false negative diagnosis from the western blot, did you attempt to obtain the test from a different doctor or laboratory? (I remember you did interview a doctor who suggested these tests were often innaccurate, and even different laboratories may yield different results) Or did you determine this was just a sloppy test which did not pick up all forms of the disease?


Lori never received a CDC positive test for Lyme but if you are familiar with the "politics" of Lyme than you know that many never have a CDC positive test. She did however, test positive for Lyme specific antibodies and was started on antibiotics, perhaps too late in her illness. She was tested twice at University of Michigan, but unlike the results she received from Igenex Lab in California, UofM's results just say positive or negative. The Igenex results show exactly which antibodies you are positive for so a doctor familiar with Lyme, or what some call Lyme Literate Doctors, can read the actual bands and make an educated diagnosis. After her death another round of testing, done at a lab in Germany, showed Lyme antibodies as well as a co-infection of chlamydia pneumonia.



4. During the mold part of the film, you seem to attempt to link high levels of unhealthy mold in your sister's house to potential alterations in her genetic susceptibility to either harbor Lyme disease or remain sick - but this is unclear. Also, you mention attempting to obtain a genetic test for this - but to my knowledge no tests (or indeed, little to no scientific knowledge) are known to determine how environmental factors influence our genetic susceptiptibility to disease. These may be epigenetic markers not easily measured in a hospital lab.


Actually, Dr. Ritchie Shoemaker in Pokemoke, Maryland, has done much research into the links between mold, Lyme disease, genes and their role in the recurrence of illness. In laymen's terms, his research shows that when you have an infectious agent in your body that bacteria or virus releases toxins. If you cannot rid yourself of these toxins they continue to keep you ill. He found that certain people who have Lyme disease have a recurrence of illness due to the gene 4-3-53 or what he calls the "dreaded gene".This gene is tested with HLA DR by PCR. We did indeed get Lori tested and she was positive for the "dreaded gene". However, by this time she was back in the hospital and there was little we could do with the results. We felt that because her health was deteriorating so quickly perhaps there were other contributing factors, this gene being one of them, and mold which would add to an already toxic situation. I suggest you check out his research at www.chronicneurotoxins.com as well as his book "Mold Warriors" which explains this in more detail.




5. The mold scenario leads me to the pollution in your area of Michigan. While I appreciate that highlighting the pollution in your sister's community (or to stimulate your audience to be similarly proactive in determining the health of their communities) is important - I'm not clear how this links to your sister's Lyme disease, her misdiagnosis, or Plum Island. I kept waiting for the movie to revisit this issue - to tell us what happened to the soil samples, etc...


Because Lori's case of Lyme disease was rare, it took on ALS like symptoms, we wanted to investigate any other contributing factors that could be suppressing her immune system, for example pollution, and by pollution I'm including metal exposure. When we found high amounts of aluminum in her tap water we questioned whether this affecting her ability to fight the borrelia infection. Lyme disease is a difficult illness to rid yourself of, especially if it is diagnosed months after initial infection, which was Lori's case. She also had a suppressed immune system from steroid treatment she recieved before the Lyme diagnosis. We felt if we could eliminate toxins, pollutants, mold, unhealthy food, we could help her body fight off the borrelia spirochete. But again, by the time we received the results of the water testing Lori was again in the hospital. The movie is a journey. The pollution testing does not have much to do with Lyme's link to Plum Island. The first half of the movie we are focused on doing all we can you help save Lori's life.


I think those are my main questions. I'd also appreciate a list of names and credentials of the people you interviewed in your film, so I can be accurate in my description of them.



Dr. Ritchie Shoemaker : http://www.moldwarriors.com/about-ritchie-shoemaker.htm


Dr. Carol Fisch : Adjunct Professor Emeritus: Microbiology,

Immunology, Parasitology

http://floridalymesupport.com/Fisch1.htm


Jerry Leonard : BA in physics from University of Maryland; Master degree in physics from Georgia Tech; actively involved in microelectronics/micro-optics research and development for 25 years. He has numerous patents and publications related to his scientific career. He has studied the documented history of Nazi Germany and the unethical government experimentation on humans for over ten years. He is the author of five books on this subject matter.


Dr. Garth Nicolson : B.S UCLA 1965; Ph.D UCSD 1970; President of Institute for Molecular Medicine, Huntington Beach, CA; Previously the David Bruton Chair at the U.T.M.D Anderson Cancer Center in Houston and Professor of Internal Medicine at U.T. Medical School; Has published 550 medical and scientific papers, 14 books and served on 20 medical and scientific journals; Honorary Colonel of the U.S Army and U.S Navy SEALs. He is author of the book "Project Day Lily" and and led the investigation and eventual exposure of the link between Gulf War Syndrome and Mycoplasma Fermentans Incognitus.


Dr. Joseph Burrascano: A graduate of New York University School of Medicine, and now located in East Hampton, Long Island, NY, practiced Internal Medicine with a strong interest in Tick-borne diseases for over 20 years. During that period he became known as one of the worlds leading experts on diagnosing and treating Lyme and associated tick-borne diseases. He is now working with ILADS on a comprehensive database system to improve treatment and outcomes for people with persistent Lyme and other tick-borne diseases.

He has researched many areas, published 16 papers in various medical journals and made numerous presentations at conferences and scientific symposia. He has spoken before the US House of Representatives and the military on tick-borne diseases and testified before the Rhode Island Governor’s Commission.

Dr Burrascano has been publicly recognized as for his work on Lyme disease, cited by book authors and had numerous interviews on the subject for television, radio and the print media, WABC-TV, WNBC-TV, WCBS-TV, PBS-TV, The New York Times, Newsweek, and the Wall Street Journal to mention just a few. He is a member of ILADS and has published authoritative guidelines on treating Lyme and tick-borne illnesses.

----There are more but these are the main ones.

Thank You,

Breanne Russell

Producer / Director / Editor - Under The Eightball
The long post above this one includes answers to the questions I previously sent to the Under the Eightball film makers. Breanne Russell kindly provided detailed answers to all these questions, which I think serve as a nice addition to my review.
For those interested in another fascinating Lyme Disease story, Cure Unknown is written and personally experienced by the senior editor of Discover magazine, Pamela Weintraub. No hysteria there, just mountains of evidence documenting the appalling behavior on the part of a powerful and irresponsible medical organization whose policies and missteps have caused suffering for many thousands of people. I couldn't put it down.
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