Oscar nominated documentary film ‘Under Our Skin’ is making waves, but who knew there was a film about Lyme disease up for an Oscar?! The film has won acclaim at several independent film festivals, and considers a potentially prescient view of Lyme disease.
‘Under Our Skin’ is punctuated with stories from Lyme disease sufferers describing highly varied and extreme disease symptoms ranging from muscle spasms, epileptic seizures, loss of speech and movement, to extreme, chronic pain and fatigue. In the film, patient after patient attested to the chronic symptoms they suffered in association with a Lyme disease diagnosis. Suffering was often also compounded by the frequent dismissal and misdiagnosis of symptoms. Lyme disease diagnosis remains a difficult, even controversial issue; diagnosis methods are not robust and a diagnosis itself can come with societal ridicule. To be honest, I hadn’t appreciated Lyme disease as the most commonly reported US vector borne disease. Nor had I appreciated the controversy that surrounds it.
There are thought to have been around 35,000 Lyme disease cases in the US in 2008. Transmission has been documented in temperate forested regions of Europe and East Asia, but infrequently in the tropics. The disease results from infection with one or more of 3 species of Borrelia bacteria (burgdorferi in USA and Europe, afzelli and garinii in Europe and East Asia) via the bite of an infected deer tick. In around 70-80% cases a characteristic bullseye rash appears at the bite site within 30 days of the bite; accompanying disease symptoms include fever, headache, depression and fatigue. For most Lyme disease patients the infection can be resolved with a short dose of antibiotics and symptoms are mild. However, long term symptoms can include damage to the neurological system, the heart and the joints. The full syndrome was recognized in Lyme, Connecticut in 1975, from sentinel cases of a cluster of children with arthritis. The responsible bacteria were definitively identified in the early 1980s.
‘Under Our Skin’ addresses the controversial issue of Lyme disease as a chronic infection which requires long term antibiotic treatment. There was speculation during the film that chronic Lyme disease symptoms could be caused either solely by persistent Borrelia burgdorferi infection, or by B. burgdorferi along with other tick borne organisms such as Babesia and Anaplasma. Also entertained were highly speculative suggestions that the bacteria can be transmitted sexually. The specific bacterial cause of chronic Lyme disease symptoms appeared to be unclear for the patients documented in this film. Persistent Borrelia and/or other bacterial infections seemed to be unconfirmed, also often unclear or absent were specific prolonged immune responses to the Borrelia bacteria.
The nuanced narrative of ’Under Our Skin’ describes the noble sufferers and ‘Lyme warrior’ medical practitioners, in opposition to the villainous officials of the Infectious Disease Society of America (IDSA) and health insurance companies. The financial affiliations and proprietary interests of IDSA Lyme disease advisory panel members were justifiably raised to indicate potential serious bias. However, there was also inappropiate comment that scientific references cited by IDSA Lyme disease advisory panel members included too many of their own previously peer reviewed articles. (As scientific experts tend to collaborate and produce articles with other scientists, this argument would justify exclusion of much relevant scientific literature!)
Lyme disease symptoms can be prolonged, chronic and varied. There is no specific recommended long-term anti-bacterial treatment for sufferers. Randomised controlled clinical trials have been conducted and reported no prolonged benefits of long-term antibiotic use for chronic Lyme disease symptoms. But there is discussion on how far these results can be extrapolated and suggestions from uncontrolled trials that long-term antibiotic treatment could be beneficial. Prolonged antibiotic treatment seemed to have worked well for the many sufferers chronicled in ‘Under Our Skin’, but no objective measures were presented. Perhaps it’s time for at least one more controlled and comprehensive trial…?
Doxycycline is one of several recommended short term (4 weeks) antibiotic therapies which can be used to treat Lyme disease. Others include oral amoxicillin and intravenous penicillin. Doxycycline has broad application and can be used to resolve respiratory and urinary tract infections, as well as infections with a number of organisms including E. coli, Streptococcus, Chlamydia and Yersinia pestis (plague) amongst others. In addition, this anti-bacterial agent can be used as a prophylaxis (and treatment) for malaria and anthrax. Using long-term antibiotic treatment for chronic Lyme disease symptoms could reduce the effectiveness of doxycyline and other medications against Borrelia bacteria and other organisms.
‘Under Our Skin’s apparently unfettered support for use of long-term antibiotic treatments was troubling to me. It may be true that the Borrelia bacteria are at such low numbers as to be poorly detected, or that they are hidden somewhere… But, it’s also equally plausible that untreated or ineffectively treated acute Borrelia infections can have chronic, debilitating autoimmune consequences - without bacteria being persistently present.
Clear examples of the negative impact of imprudent antibiotic use are not difficult to find. The emergence and spread of drug resistant organisms including multi-drug resistant tuberculosis and methicillin-resistant Staphylococcus aureus (MRSA) are just two of these (doxycycline is currently used to treat MRSA). While many scientific issues where speculated upon in ‘Under Our Skin’, the consequences of long-term, non-specific antibiotic treatment were concerns which this film failed to raise.
‘Under Our Skin’ is an enlightening and engaging Oscar nominated documentary film. The film explores what it means suffer chronic Lyme disease symptoms in America today, keeping at it’s core the unheard narratives of these sufferers.
More on these topics:
Antibiotics, Borrelia, Doxycyline, Lyme disease, Under OUr Skin
chronic lymie says:
This is one of the most unbiased reviews for UOS and I have read. As a sufferer, I appreciate your openness to the subject. I have to say that the CDC count of 35,000 is very low. Even the CDC admits to that.
I worry about the focus on term antibiotics when it comes to Lyme. Not all of us take that route, in fact most people I know aren't on long term IV antibiotics. The focus of the controversy seems to be here though. I agree with you when it comes to the consequences of long-term, non-specific antibiotic treatment. BUT, I also believe that for some sufferers that is the only answer, they are that sick.
Joanne says:
If you took time to read the presentations to IDSA review panel last July found on their website or www.ilads.org you would realise that lyme disease is a formidable bug hard to diagnose and even more difficult to cure.
There is sufficient evidence that supports seronegativity and persistent infection.If you were chronically ill and antibiotics improved your symptoms it would not matter a damn if there were Random Placebo Controlled trials that confirmed it or not you'd take the antibiotics. Antibiotics helped me to recover after 6 1/2 years of chronic ill health when steroids and anti inflamatories had done nothing.
CDC indicate that in reality the nimbers infected each year would be 10x the numbers of positive tested cases reported.
Miguel says:
The primary study used to reference the ineffectiveness of long-term antibiotic treatment was that by Mark Klempner, "Two Controlled Trials of Antibiotic Treatment in Patients with Persistent Symptoms and a History of Lyme Disease" published in 2001. There is some question whether or not this study was, in fact, designed to fail. Treatment doses, choice of antibiotics, and duration of treatment appear to be inadequate.
In addition, testimony during the Infectious Diseases Society of America Lyme guideline hearings revealed that the results were deliberately statistically manipulated to achieve this outcome of "failure." These hearings were mandated as part of the settlement of the Connecticut Attorney General's antitrust investigation of the IDSA Lyme disease guidelines.
Funding for honest and competent long-term treatment studies done by others than those in the IDSA Lyme cartel has been mysteriously lacking.
Unfortunately for the Lyme victim, these IDSA Lyme guidelines are widely distributed and followed by uninformed physicians and ethically challenged medical professionals and HMO's.
Chris says:
How interesting that a cell and molecular biologist states very little, or nothing, on the nature of the Borrelia Burgdorferi organism, other than:
Persistent Borrelia and/or other bacterial infections seemed to be unconfirmed, also often unclear or absent were specific prolonged immune responses to the Borrelia bacteria.
Instead, this non-M.D. focuses on treatment protocols and therapies, which he is no more qualified to talk about than a lay person.
How far does the CDC kabal reach?
-Chris
Onome Akpogheneta says:
'Under Our Skin' emphasised the experiences of chronic sufferers of Lyme disease and drug treatment for these sufferers.
The presence of infectious organisms and immune responses to these organisms are important determinants of disease and treatment. I agree that I am not an MD, and do not intend to suggest treatment therapies and protocols.
However, it is important to consider the potential wider epidemiological consequences of inappropriate treatment for any infection. In this case, 'Under Our Skin' supported long-term antibiotic treatment for chronic Lyme disease sufferers, but the question remains whether long-term antibiotics are the most appropriate medications. There are compelling arguments on both sides of the debate, but I do think further well designed studies are necessary...
Thanks for your comments and discussion.
ps. As of now, I have no affiliation with either the CDC cabal or the IDSA cartel.
Greg says:
I went undiagnosed for 8 years, lost a career, the ability to think clearly, perform any physical activity, and suffered considerably. 21 doctors said here was nothing wrong, but now I know they just gave up looking. This documentary turned it all around for me. I sought out a Lyme specialist, began oral antibiotics, added detox and immune support, after a month began feeling better and now 4 months later feel 200% better, close to 90% my old self. This documentary turned on a light and showed me the way. I can't tell you how much this has impacted my life. Everyone should watch this documentary, whether you have Lyme or not.
Enlightened80 says:
The scientific evidence for Chronic Lyme disease and the PERSISTENCE of the COMPLEX Borrelia Spirochete is DETAILED and VAST, unlike that of the IDSA and their devoted followers viewpoint, that this bacteria is "hard to catch and easy to cure". Please see http://www.lymeinfo.net/medical/LDPersist.pdf for 70 studies which show the persistence of the bacteria. You may also like to look at a study titled "Rapidly progressive frontal-type dementia associated with Lyme disease" which demonstrates a tragic case of a gentleman diagnosed with Dementia after being treated with a course of antibiotics for Lyme Disease. He showed improvement whilst on antibiotics but relapsed when the antibiotics were stopped. He was institutionalised for the psychiatric condition but soon died. The authors of this study concluded that "Lyme disease must be considered even in cases with purely psychiatric presentation, and prolonged antibiotic therapy may be necessary"
The IDSA continues to cite the following study to support its view that "long-term antibiotics are not beneficial in treating Lyme disease", the very study performed by Klempner ("Two controlled trials of antibiotic treatment in patients with persistent symptoms and a history of Lyme disease. New England Journal of Medicine, June 12, 2001") which has been trashed by an independent research group (amongst others) as being flawed and "bad science".
Various organisations are often cited to substantiate the IDSA guidelines, namely the CDC, ALDF and EUCALB - when those very organisations actually hold no independent viewpoint at all but merely voice and duplicate that of the IDSA Lyme disease panel. Different organisations are being cited to give the appearance of wider and more authoritative backing from different, independent sources when the membership of these organisations actually contains the very same people amongst their number and, therefore, disqualify them as an independent source. There is no corroborating evidence from varying authoritative points of reference, then, to support this view promulgated by IDSA; there is, in fact, only one point of reference – the guidelines as set out by the IDSA Lyme disease panel, which is currently under investigation for GROSS conflicts of interest!
NellaRose says:
I went undiagnosed for 5 years, had 2 heart attacks, removed all metal fillings, did chelation therapy, spent hundreds of thousands in insurance and copays, was near death-bedridden when a doctor from India saved my life with a $30 blood test and then did western blot. I saw 26 doctors in one year alone and was told everything I did not have and was told many times it was in my head. Most said chronic fatigue and fibromyalgia. An infectious disease doctor in Colorado didn't test blood, saliva, urine - nothing, charged $600 cash and said nothing was wrong with me. The Indian doctor took his oath to heart and started me on IV Rochepih #60 in 30 days which got me out of bed. It was in my eyes, brain, joints, heart - everywhere. I then did 8 more different antibiotics because of stages and barriers. US doctors are in denial, do not want it to effect tourism, fall short of their oath. and are in fear of government...One doctor in 5 years of slowly dying would listen to me and do his job - remember he was from India. I'd be dead if the government ran any more of this process than they already do. Let doctors save Lyme patient's lives!
B.C. says:
Onome needs to watch the IDSA review videos (which are available online) and then re-watch this film. First of all, the scientific evidence presented to the review panel is to the point where any sane, educated, unbiased person would conclude chronic Lyme is the result of persistent infection.
I also find it troubling that Onome doesn't comment in this review on the attack on the medical licenses of Lyme specialists. This constitutes one-third of the entire film. And the IDSA syndicate isn't just "biased" as Onome suggests, it is engaging in a systematic effort to squash dissenting opinion. In the film, Dr. Donta mentions his removal from the 2006 guidelines committee for not going along with Wormser, Shaprio, et al.. I don't see how a legitimate film review could go without mentioning any of these facts.
David says:
There are multiple issues which are being put together.
1) Does untreated Lyme disease cause major problems? Everyone agree yes.
2) Do people treated for Lyme disease have persisting symptoms after completion of effective antibiotic therapy? The data say yes. IDSA physicians agree with this.
There are several leaps.
1) Are these chronic, persisting symptoms caused by ongoing infection? There are no good data to suggest this is true. However, the absence of data does not conclusively prove the inverse. However, IF this was true, the next leap is:
2) Does prolonged antibiotic therapy help the symptoms? Show me the data! There are no such data. There have been five double-blind, randomized, placebo-controlled clinical trials that have convincingly demonstrated that antibiotic treatment of post–Lyme disease symptoms does not improved symptoms more than placebo alone. It is not statistical manipulation to use biostatistics in science.