Lyme cases spike 77% from 2006 to 2008
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Lyme disease continued its steep rise in 2008, as the CDC posted a final tally of 35,198 reported cases, a 28% increase over the previous year. Looking at a two-year timeframe, cases increased by 77% from 2006 to 2008. According to CDC epidemiologists, these reported cases are underestimated 6- to 12-fold, due to inherent flaws in its passive reporting system. So, the actual number of new Lyme cases in 2008 may total upwards of 420,000. And many Lyme-literate physicians believe that the real numbers may be even higher.
In 2008 the CDC changed its Lyme reporting process to include both “confirmed” and “probable” cases in the total, and during this transition year, it’s difficult to tell how this affected the accuracy of the case count. Fifteen states failed to report any “probable” cases.
Here are the states with the most reported Lyme cases in 2008:
This change in the Lyme disease surveillance process was initiated in 2008 to reduce the burden of mandatory CDC Lyme reporting on resource-strapped state and local health departments. But it did nothing to address the fundamental flaws in the Lyme surveillance criteria—it is still based on an inaccurate blood test and an outdated list of Lyme disease symptoms. [1]
To compensate for the ambiguity caused by bad tests and diagnostic criteria, local health officials often must make time-consuming calls to treating physicians for clarification. In New Jersey, for example, the health department found that:
–Each Lyme case took health officials an average of 2 months to close
–24% of Lyme cases were never closed or counted
–The Lyme reporting process in New Jersey alone required 5 full-time employees to handle
(The overworked New Jersey health department quantified the absurdity of the Lyme surveillance process in their report, “Burden of Lyme Reporting.”)
To add insult to injury, the Lyme surveillance criteria, which were initially designed as analytical metrics for CDC epidemiologists to track the spread of the disease, are being used inappropriately for Lyme disease diagnosis. While the CDC officially says that this surveillance criteria should **not** be used for diagnosis, the organization is sending a mixed message to physicians and patients by officially endorsing the Infectious Diseases Society of America (IDSA) Lyme guidelines, which mandate that this overly stringent surveillance criteria be met before patients can be treated. And though the IDSA claims that these diagnostic guidelines are not mandatory, they have been used as legal hammers in challenging the medical licenses of both Dr. Charles Ray Jones and Dr. Joseph Jemsek, two prominent Lyme-literate physicians who diagnose based on symptoms, exposure, and a less rigid interpretation of the tests.
Meanwhile, as the number of Lyme sufferers continues to climb by double-digits the silence from both the CDC and mainstream medicine is deafening. If the CDC reported an increase of 77% for AIDS, wouldn’t it be on the cover of every newspaper and medical journal in America? So what’s going on with Lyme disease?
The problem is that most people and frontline physicians believe that Lyme disease is a trivial, over-diagnosed illness that can be cured with 2 weeks of antibiotics.
The reality is that untreated or undertreated Lyme disease can result in a serious neurological infection, similar to syphilis, for which we have no accurate tests and a poorly defined set of symptoms. Information and research on this disease has been controlled by a small group of academic researchers, operating under the legal protection of the IDSA, who have conflicts of interest in Lyme-related vaccines, test kits, and the very definition of the disease. (For more information on these conflicts, watch this clip from UNDER OUR SKIN, review the ruling from the Attorney General of Connecticut, and read the book, “Cure Unknown.”)
Much to the frustration of Lyme patient advocacy groups, the CDC has allied itself to the narrow IDSA view of Lyme disease, and has repeatedly refused to incorporate new diagnosis and treatment information onto its website.
Recently, new research has shown that the CDC-endorsed blood tests, which are based on a single Lyme strain from Shelter Island, NY, may not be detecting all the bacterial strains of the disease.
In the recent IDSA Lyme evidence hearings, initiated by the Attorney General of Connecticut, David Volkman, Ph.D., M.D., Emeritus Professor of Medicine and Pediatrics at SUNY, Stony Brook, reiterated these evidence-based findings [3], saying:
–Persistent Lyme is well documented in mice, dogs, and man
–The current Lyme tests are unreliable
–The CDC surveillance case definition for Lyme is being misapplied
In light of this new evidence, it’s clear that the latest revision to the CDC Lyme surveillance criteria is akin to putting a butterfly band-aid on a cut to the femoral artery. The new regime at the CDC needs to look more accurate ways of tracking Lyme disease, such as the automated lab reporting system that they’ve funded for tracking Lyme disease in dogs, through Banfield pet clinics.
And with chronic disease accounting for 80% of our nation’s health care costs, our public health system needs to know how many of our citizens are suffering from both the acute and chronic forms of Lyme disease.
The tragedy of this broken reporting system is that it is ruining lives. Physicians make clinical decisions based on the CDC case numbers, and if they think that Lyme is rare in their area, they may not consider it as a differential diagnosis. Congress allocates research funding based on the CDC case numbers, too, and by underestimating these numbers by a factor of ten, grants will go to other diseases. (We hope that our documentary, UNDER OUR SKIN, has helped to raise Lyme disease awareness, and in turn, the accuracy of the Lyme case count.)
It’s time for the CDC to stop downplaying the magnitude of the Lyme epidemic and to put the truth back into the testing and the reporting system.
Below: Though the CDC shows a majority of cases in the Northeastern states, there is evidence that the CDC-endorsed Lyme tests may be missing the new Lyme strains emerging in the South and West. Click here to view/download this map.
[1] A review by Stricker and Johnson (2007) of North American case-control studies of commercial two-tier Lyme testing reached the following conclusion: “The two tier testing system endorsed by the Centers for Disease Control and Prevention (CDC) has a high specificity (99%) and yields few false positives. But the tests have a uniformly miserable sensitivity (56%)—they miss 88 of every 200 patients with Lyme disease.” An updated analysis including more recent studies found that the sensitivity of the two-tier test system was even worse (46%). This sensitivity is far below the 95% cutoff required for an accurate diagnostic test, and much worse than the 99.5% sensitivity of commercial HIV testing.
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Thank you Thank you Thank you, for all you have done, and continue to do for victims of Lyme around our continent.
Your documentary on Lyme was a real eye opener for many people who really had no clue what Lyme is all about, and your blog continues the story. Your perseverence is amazing. On behalf of Canada’s leading LLMD, Dr. Murakami (who was forced into retirement because of his treatment of Lyme patients) we thank you.
Kudos to you!
Melanie Lauren
Director, Marketing, Media & Fundraising
Dr. E. Murakami Centre for Lyme
British Columbia, Canada
Great writeup, Kris!
Many people are unaware of the May 2005 closed door meeting between CDC officials and the then president of IDSA in which a plan to discredit and suppress non-IDSA Lyme guidelines (ILADS) was discussed.
One has to question whether the financial interests in Lyme disease of certain CDC employees are influencing their biased views.
Miguel Perez-Lizano
Thank you, thank you, thank you, for all that you have done to bring this Lyme epidemic to light for many that simply just don’t understand. On behalf of all of the “Lymies” out there thank you for telling our story.
2007 was a very bad year here in VA for Lyme Disease. Ticks (and other insects) have been particularly bad and their numbers increasingly worse.
Spring 2007 was when my Jim contracted Lyme Disease in VA. Life has never been the same for him since.
Speaking of neurological damage along with all the other symptoms he’s had to deal with … his right side diaphragm has been paralyzed from results of Lyme Disease and he has to spend a minimum of 12 out of every 24 hrs minimum on oxygen. He can not sleep without it.
On top of that, they want to add insult to injury by wanting to build VA’s largest coal plant right here in our tiny town – 1500 MW coal fired power plant. (more about that on my blog)
My understanding is that oxygen concentrators only filter out nitrogen and having a coal plant nearby (within a mile of anyone living in our tiny town of Dendron, VA – and our water supply too) will exacerbate the amount of pollutants concentrated in the oxygen he will be breathing!
[...] http://underourskin.com/blog/?p=337 [...]
Your understanding that oxygen concentrators only remove nitrogen, while concentrating the other gases and particles in air is correct, from what I’ve read. Two things will help: 1) Consider a HEPA filter followed by a activated charcoal (carbon) canister filter on the intake of the concentrator, for maximum removal of pollutants.
2) If your Dr. / Insurance won’t go for bottled oxygen, look into getting your own tanks of oxygen. Industrial welding oxygen and aviation (pilot’s breathing) oxygen come out of the same tank at the factory, and are a fraction of the price of medical oxygen if purchased in 125 – 300 cubic foot tanks. Medical tank regulators come in two styles, one of which is compatible with industrial / aviation regulators.
16 cubic feet per hour = 8 liters per minute
I have stage 3 Lyme disease. I am a mother of a seven year old son. I have had Lyme for 18 years(I am 39). I have through the years had 4 remissions, bit this time it is different. The Lyme has basically shut down many of my bodies functions. These include: my thyroid Function( I have none) , my adreanal function is zero, I have no iron , so I get ivs of straight iron ( for the last 6 months), and still I test zero for iron& I also have zero vitiman d. My brain has leasions and fluid around it, I have Lyme induced arthritis in my shoulders hips& knees. I am anxious and have multiple anxity attacks per day along with severe depperession. My brain does not produce any serotonin so I have taken a perscription of straight serotonin along with 40 MHD of prozack. When I was last tested I still had zero serotonin being produced. I really would like to go into the hospital and have them put me in a drug induced coma and blast my system with iv antibiotics. I can’t go through the physical pain regarding the herxing that has to happen. I cannot do it, I have been in chronic pain for to long and I don’t think I can stand another pic line for however many of months again. I need to have some quality of life. I have my son this time around to think of and my husband also. Has any one done or heard of anything like this, or a docter that would agree to do this. I live in southern NJ , very near center city PA, bit I would go to the ends of the Earth if need be. Please someone contact me. I just cannot do this anymore. My email address is katiecandieinc@aol.com thanks for any response.
Thank you for bringing this on going,wide spreading disease to peoples attention.I also have LYME and so does one of my friend and her son also. We live in the state of KANSAS,city of LAWRENCE,and I have to tell you that there are so many people here and cities all around us that also have LYME,just wanted someone to know that their are us out here also,so I think the state of KANSAS needs to be looked at also. THANKS FOR LETTING ME SHARE MY VOICE.
Check out Dr. Dietrich Klinghardt’s DVD from his recent 3-day Lyme Conference where lots of lyme doctors attended as well as all kinds of info, like neurotoxin issues and exposures and how to rid them, how the good and bad labs do their work, how to find practitioners who have studied with Dr. Klinghardt, etc., and lots of info on the “other” coinfections, like babesia, bartonella and the airborne one, mycoplasma that our vets are returning home with. It is a very complete DVD on just about everything to do to help with Lyme and coinfections. You can purchase it from his website: http://www.neuraltherapy.com (he has a few websites, but this is the one I’ve memorized).