LYMEPOLICYWONK: Why Doesn’t the CDC Count Lyme Disease Cases in the South and the West? Everybody Else Does.
The risk of contracting Lyme disease depends on where you live or visit. The best way to determine an area’s risk is to look at a map. However, maps from different sources vary. For example, the CDC surveillance maps show exposure as primarily limited to the East Coast, but other sources suggest a much broader geographic risk of exposure—particularly in the South and the West.
At our last board meeting, I presented information about how different sources map Lyme disease, which we taped. You can watch that video, by clicking the arrow below.
MyLymeData and the CDC Maps Paint Different Pictures of Risk
When we launched MyLymeData, we decided to compare the number of cases reported by the CDC with the number of cases enrolled in MyLymeData state-by-state. In states that are not considered by the CDC to be endemic, the number of cases in MyLymeData surpasses those reported by the CDC.
On the map below, the states in blue have a higher number of people enrolled in MyLymeData than are included in total CDC case reports. (In green states, the CDC has more cases.) The differences reflected on the map suggest a broad pattern of underreporting by the CDC of Lyme disease in the South and the West.
There are some important differences in the MyLymeData and the CDC statistics. MyLymeData collects information from participants regardless of when they were infected, while the CDC reports are for the year 2015. However, the MyLymeData cases included in the data collected by that time was 5,776—a far smaller sample size than the CDC’s (38,069). This means that the MyLymeData sample is about one-seventh of the cases reported annually by the CDC. Ordinarily, CDC cases should surpass MyLymeData cases across the board in every state just because their sample is so much larger.
In total, MyLymeData participants exceed the number of cases reported by the CDC in 24 states, mostly in the South and the West. (Scroll down to see the table.) As I explain more fully in the video, this suggests that there is systemic under-reporting by the CDC in southern and western states.
Other Sources of Data Confirm Greater Risk of Lyme Disease in the South and the West than CDC Reports.
We then looked at other sources of data suggesting risk–including the number of dogs reported by IDEXX who test positive for Lyme, and the number of patients who requested physician referrals from the International Lyme and Associated Diseases Society in that state. Remarkably, we found that every one of these other sources reflected higher numbers of cases in the South and West than the CDC did—sometimes by a staggering amount. Consider, for example, the number of CDC cases compared to the IDEXX canine cases.
The table below shows how various data sources compare to the 24 states where MyLymeData reports more cases than the CDC reports.
There are, of course, other considerations that the CDC might advance–for example, some people may acquire Lyme disease while traveling to another state. However, the large number of canine cases confirm the existence of Lyme disease bacteria in all states and the geographic expansion of Lyme disease carrying ticks (now in over 50% of US counties where tick studies have been conducted) reflects a growing geographic risk. Even in an area where no black-legged ticks have been identified, the key question is not so much whether the studies indicate they are present, but whether anyone has conducted tick flagging studies in the area.
A recent big data study using insurance data claims for patients with Lyme also confirms an expanded reach. For example, North Caroline is in the top 5 states for Lyme disease related insurance claims, but it is not in the CDC top 14 states.
What this data makes clear is that while Lyme disease is not everywhere, it could be anywhere. When we enjoy the outdoors or let pets who have been outdoors into our homes, we should be mindful of hitchhiking ticks who are looking for a blood meal and take appropriate precautions. Important points to remember:
- There are no “safe” states when it comes to Lyme disease.
- CDC surveillance statistics underestimate the risk of Lyme, particularly in the South and West.
- The IDEXX Canine maps are the best indicator of risk in a given area.
- Centers for Disease Control and Prevention, Reported cases of Lyme disease by state or locality, 2005-2015. CDC cases are the total of confirmed and probable for 2015. https://www.cdc.gov/lyme/stats/tables.html
- The MyLymeData participant data was taken from Phase 1 and a portion of Phase 2 of the survey project.
- The physician referral request data was graciously provided by the International Lyme and Associated Diseases Society.
- The IDEXX canine data is based on their 5-year rolling average data provided on their website. http://www.dogsandticks.com/map/2012/
The LYME POLICY WONK blog is written by Lorraine Johnson, JD, MBA, who is the Chief Executive Officer of LymeDisease.org. You can contact her at email@example.com. On Twitter, follow her @lymepolicywonk. If you have not signed up for our patient-centered big data project, MyLymeData, please register now.
- August 3, 2017 at 7:23 am
Why? Because they are allowed. Without proper legal (legislative) enforcement, the CDC will continue with inaccurate reporting (or lack thereof). As a result, countless more will fall ill due to absence of accurate reporting & information. Lastly, not having the support from the medical community just adds fuel to the fire.
- August 3, 2017 at 8:27 am
Great article. Would be interesting to see MLD case data on a per capita basis. That would show the true risk, Texas and California obviously have plenty of Lyme, but they’re also the most populous states. My bet is Montana, Wyoming, Idaho and Colorado would move to the top if the data were presented as percent of population.
- August 3, 2017 at 11:02 am
The obfuscation of the true numbers of infected individuals (~20% of the adult population overall, but much higher in certain areas) is not just because Pharma doesn’t have something to sell, but 3rd party payers would suddenly find themselves obligated to reimburse for treatment of a pandemic. So, to them it is important that Lyme disease be relegated into a world of negated illnesses where they can minimize the financial impact.
- August 3, 2017 at 10:55 pm
When my daughter was notified in 2009 by her doctor that she was positive for Lyme Disease, I myself called Pinellas County Health Dept in Clearwater, Fl. The lady on the line laughed at me and said, “We don’t have Lyme Disease, she must have gotten out of state.” In 2003 we took a tick out of my dog in Tarpon Springs, Fl, she died 3 days later from Tic Paralysis, this is the same year my daughter started getting sick? Today, my daughter is suffering from NeuroBorrielios, she has been sick since the age of 15. Dropped out of school, competitive cheerleading, has no friends and basically is just trying to survive.
Lyme Disease is now an EPIDEMIC in the U.S. Don’t let the CDC tell you otherwise.
- August 5, 2017 at 3:07 pm
Find a lyme literate naturopath ASAP! They will take the time to help you but the cost will come out of your pocket… I had to travel 3 hours to find my LLN but it was worth every minute of travel time…. I was laughed at by a infectious disease doctor who said this wasnt in my area of Vermont!
- August 4, 2017 at 6:31 am
Obviously the answer is simple. “They do not want to” since they do not have to”. Like holding a lie: if I do not admit it I can not be guilty. Any person, organization, county, state, country can always use words, numbers, or any form of expression to manipulate the truth and either make things look better or worst all depending on the real intention. That is why a person must always become educated and read the fine prints. I believe that health care (?) Including CDC, IDSA all many others need to be exposed and that “we the people” have started to fo this and must not stop. I hope that all the guilty parties are having sleepless nights and sh.. days.
- August 4, 2017 at 10:59 am
I agree! I do not understand how so very many people with tick borne illness are not “rioting in the streets” over how we are being treated (or NOT being treated)! How can insurance “just not pay”. Why aren’t we being diagnosed in a more timely manner. Why are we being told “it is all in our heads”? Because we are ALLOWING ourselves to be treated this way. WE ARE EDUCATED. But we allow others to IGNORE us!
- March 11, 2018 at 7:02 am
Phillis ..I agree . I often think the same ..WHY ARE WE NOT RIOTING IN THE STREETS? My daughter got Lyme disease and rmsf and confections while hiking in OREGON sept. 2016. Today (3/10/18) she’s bed ridden. SO THE DR. THAT SAYS IT’S NOT IN OREGON YOU ARE SO WRONG!!! We live in GLASCO KANSAS and one of the confections she tested positive for several times is babesia ducani. FROM THE WEST COAST!! WE ALL NEED TO COME TOGETHER AND RIOT IN FRONT OF CDC , INFECTIOUS DISEASE ASSOCIATION AND WHITE HOUSE! AS MOST ..I HAVE A,LONG HISTORY OF MY DAUGHTER NOT GETTING TREATMENT ETC ETC…IT’S TIME TO STAND UP FOR OUR LOVED ONES WHO ARE SUFFERING and GETTING THE SHAFT!!
- August 4, 2017 at 9:54 am
We can accept the CDC statistics or not. The case numbers are very skewed because most are diagnosed with other diseases. The way Lyme affects the immune system, you can be very sick with Lyme, as my wife is, and be negative as far as the CDC is concerned. 2-days before my wife was diagnosed by a Lyme literate doctor, a CDC doctor insisted my wife did not have Lyme based on western blot. The medical community, as a whole, does not understand the complexity of Lyme and the many coinfections; how can the statistics be anywhere close to accurate? The number of cases are under reported because doctors don’t know. Out of 10 doctors my wife visited, only one even suspected Lyme but quickly ruled it out based on CDC criteria.
Because of this, little or no attention is put on Lyme. I am in Texas. There are very few medical resources to help with Lyme. Even though there is a major medical center close by, I have only found 1 doctor who understands Lyme. Why isn’t the medical community more proactive on spreading the word on this disease?
- August 5, 2017 at 3:28 am
Why? Because the diagnostic criterion are unrealistic and narrow given the adherence to highly unreliable tests. Until the FDA approves the current BETTER tests (culture tests) they will continue to deny what we all know is true. The way I see it, until the patent laws change and unethical patent holders along with the FDA are held accountable, we cannot count on the CDC for accurate information.
- August 5, 2017 at 2:18 pm
I am in Mississippi and have Lyme. Not sure how that would have been reported since my primary care physician would not give me a Lyme diagnosis. Had to go out of state. Many people I speak to here in our state who have it could not get a diagnosis from their physician. Numbers are certainly skewed.
- August 5, 2017 at 3:19 pm
I live in the South and I, and other family members, were recently diagnosed. Just in the last week, I have met two others who live in my town and caught the disease in our state. I think there are hundreds more who are walking around with this, and their doctors don’t put two and two together. I also think that it was in my state years before it was reported. At least the health department in my state is taking it seriously and trying to get the word out.
- August 5, 2017 at 4:35 pm
I know this well, in 2006 I tested positive on the Western blot and a spinal tap and sent the results to the CDC. The CDC did not count me as having Lyme because I did not take the ELISA test first, well they said I did not follow their “protocol”… I am on hospice and will die soon from something that the CDC will not admit that I have.
- August 5, 2017 at 6:38 pm
When I first got sick, the very first doctor I went to stuck his hand in my face and told me there was no lyme in Kentucky. I was livid. I told him to call my vet. I’m a dog rescuer. I have had countless dogs treated for lyme or other tick diseases here in my many years in rescue. Unfortunately, I became sick when I had no doxy on hand and that was also when the price of doxy had soared. We used to buy a bottle of 1000 doxy capsules for about 70 bucks. That same bottle had soared to just over 700 bucks. The supply was also limited and my vet was having trouble getting it. It took 3 doctors for me to find one that would listen to me. Then my insurance refused to pay for doxy and insisted on amoxi.
Kentucky is an endemic area. I mostly rescue hunting dogs, beagles and hounds. So we see it a lot since these dogs are rarely treated with preventatives or treated well. I have 2 in my care right now with lyme and eCanis (ehrlichia). A few months ago I took 5 dogs in one day out of the shelter. 3 of the 5 were positive. A friend was involved with the tick study with Cornell and Texas A & M and the new tick panel they have. Her husband is a vet. She also rescues hounds. She was seeing 100% positive, even in dogs that tested neg on the 4dx (elisa test for dogs). Doctors need to work with and talk to veterinarians. I think they would be shocked. If dogs are hitting that high a percentage of positive lyme tests, you know it is widespread in people. I cannot help but wonder how many Appalachian children are on dangerous add and adhd drugs when they really have lyme.
- August 5, 2017 at 7:19 pm
The reporting for Georgia is inaccurate because the doctors refuse to test you for Lyme Disease.
- August 16, 2017 at 8:25 pm
To be on our map, participants must have responded that they have been diagnosed by a healthcare provider. We don’t ask where their healthcare provider is and some patients travel out of state for diagnosis and treatment. We do ask about testing but you don’t need a positive test to be on our map.
- August 5, 2017 at 8:38 pm
Seems pretty obvious to me why CDC doesn’t count those cases. Likely these species/strains are heterogenous compared to strain B31 that is the classic “northeastern” model around which they have bioengineered vaccines. To acknowledge additional strains/species will torpedo vaccine agenda. It will not even be theoretically possible to bioengineer a Lyme vaccine to ALL these strains/species — so let’s just lie and say they don’t exist, and there is no human pathology. The present vaccine model is a hoax. Anything more will take it beyond a hoax into what they cannot even pass off as possible. So, deny, deny, deny.
- August 6, 2017 at 3:23 am
As a member of the My Lyme Data study, i think your conclusions are incorrect. First if all, i contracted Lyme Disease on the east coast in the 1970s. But, never knew i had it until 40 years later. By then i was living in the west.
I contacted ILADS from a western state. I was tested and diagnosed in a Western State. I participate in the MyLymeData from a western state. But, i most decidedly contracted Lyme Disease on the east coast where i grew up as a kid.
While i distrust the CDC, I’m afraid your conclusions are a bit if a stretch.
- August 6, 2017 at 11:27 am
This is the danger of anecdotes. I have exactly the opposite story and I know many, many others like me. I contracted Lyme in Montana and/or Washington state. As another example, I overheard a conversation between doctors at the infusion center and they were talking about several cases of Lyme contracted in communities in Northern New Mexico where the patients had never left the state or even their area. While I agree more study is needed, it’s abundantly clear that Lyme is being contracted in every state and now more than 50% of all counties have positive reports.
- August 6, 2017 at 2:57 pm
It’s not about anecdotes its about sound research. Research needs to be flawless and conclusions properly stated if we are going to win this battle. Thats all I’m trying to point out.
Garbage in/ garbage out.
I think great work is happening here, but if tjey overreach on conclusions we lose.
- August 6, 2017 at 5:08 pm
But was it garbage in? I don’t recall the exact phrasing of the questions but I recall entering the state where I was (severely) bitten by a tick with a long attachment time and where I most likely contracted the illness (Montana), not the state where I was diagnosed (New Mexico), just as in your case. If you want the state where I first started showing serious symptoms that would be Washington. None of these states are in the East.
I think until we have an approved and sensitive test that’s routinely applied by providers it’s all a bit of garbage in garbage out. It’s amazing to me that I’m 51 and we still don’t have a test that works.
- August 6, 2017 at 7:05 pm
My background is also in the sciences and while data is much needed, I am concerned about self reported data with out requiring some way to validate the reported data. I am concerned that it does not give a credible outcome. Granted that is what the IDSA does and they seem to have great pull with the CDC so maybe this will work. I would like to mention one thing I noticed is that my state has some different (with validation) results by a lyme literate group.
- March 31, 2018 at 12:52 pm
The survey conducted by MyLymeData does have a question regarding did one get a confirmed lab test, or was it a clinical diagnosis, and one can upload their test results if one wants to. The compiled data delineates between self-reported/no lab confirmation or with lab confirmation.
One of the problems with the CDC “surveillance” is that a positive test isn’t “good enough” proof; a person also has to have had the bullseye rash! Since I wasn’t diagnosed for many years, how would I recall that, or prove it to my doctor? And remember (in 2012) the CDC did acknowledge that Lyme was greatly “under-reported” by a ridiculous amount – going from 30,000 cases to an estimated 300,000 cases!
- August 7, 2017 at 1:08 pm
Why is anything not CDC listed as ‘mild’? From what I’ve seen and what I’ve experienced, it is anything but ‘mild’. So, I guess the test results determine how ill a person is? Bogus. And the CDC gets away with it because there is no money to be made…yet. When there is money in it, they will get on board. They are a front for big pharma.
- August 10, 2017 at 10:14 am
Actually there is Big Money in Not acknowledging what Lyme is and how it destroys you from the inside out. Think about all the doctors, tests, procedures and surgeries performed just to find out what’s making us so sick. That’s Big Money, then to be told there’s no cure and you must live with your new limitations which requires specialists. I spent thousands over a 9 year span and if you x’s times that by the true number of Lyme patients being told its Not Lyme cause its Not in their state. There’s more money if they deny Lyme, had I gotten properly diagnosed and treated June of 2008 in Oregon it would of cost me a bottle of antibiotics. Not 21 months of IV antibiotics, shots, weekly home healthcare nurse, bone marrow biopsy, even my gall bladder was removed. And to top it off Disability/Medicare doesn’t pay for anything Lyme This is CRIMINAL and so many more unsuspecting folk are getting sucked into this financial medical nightmare just because they are in a desperate search to get their old selves back. If my physician didn’t kill himself two years ago I’d be suing him for medical neglect and malpractice. Doctors must be held accountable!!!!!! Don’t be fooled, listen to the ones that live with Chronic Lyme daily first hand. Prevention is the only way to avoid these man-made diseases. Get Tick Spray and pray pray pray, no one is exempt, it could be You next. God Bless
- March 31, 2018 at 1:27 pm
Well said and I share your frustration and sentiments. Maybe your physician got /had Lyme/Bartonella and killed himself over his own incompetence! The problem with suing is one has to prove gross incompetence that stands out from his peers; even docs in New York and other hot spots are missing Lyme diagnosis, which is why I didn’t pursue that route. Plus, all the money in the world can not replace all I’ve lost – like independence, mobility, freedom,friends, health, happiness…However- wouldn’t it be great if we didn’t have to PAY them if they don’t diagnose, or get reimbursed financially (with interest) if they make the wrong diagnosis!?
Not sure about your statement “man-made diseases” -are you referring to the theory that “Lyme” came from the government lab damaged in the hurricane? Or do you mean “man-made” because they don’t treat the person? Insects/vector blood-suckers have been around for a long, long time. Bacteria morphs/changes as we now know with the different Lyme forms and Bartonella strains.
Yes, doctors should be held accountable, especially for their assistants, “practitioners” and others under their supervision. The head doctor should be reviewing what his workers are doing (or not doing/diagnosing)! And, I am sick of them now telling the person “find a Lyme literate Doc” because ANY doctor who wants to be current and up-to-date can treat a Lyme bacterial infection. Plenty of legitimate sites (like Columbia University, Iilads, etc) and Dr. Horowitz’s material even has a physicians reference section!
I think the Medical licensing board, or some over-seering regulator should be reviewing current health epidemics and information AND THEN requiring doctors or heads of each facility to attend conferences where they get up-dated information and HAVE to pass it on to their workers and maybe even test them to see if they “get it”!! Otherwise, they can’t keep their license.
- August 7, 2017 at 1:32 pm
I live in Washington state and even though I had a positive Lyme test I was told I could not have Lyme disease due to the “fact” that it “isn’t endemic” to the west coast. I am 1000% sure that there are numerous folks here who the experts are not helping because of this limited thinking.
- March 31, 2018 at 1:33 pm
Hope you found a new doctor, because Northern California is definitely a Lyme hot spot…Not that it matters because Lyme is in every state. And I’ll bet he didn’t even ask if you’ve traveled anyway, nor do they ask if you were camping, gardening, rafting, hiking, have sick pets…
- August 7, 2017 at 11:54 pm
Honestly after 9 years of this fight and still getting flack from Drs about chronic Lyme not existing rather you are disabled with post Lyme Syndrome. This disease was man-made for purpose of population control and denial at its finest. I commend you for all your hard work but honestly the CDC has many decades of scientific facts and studies. They don’t want us better, they are bank rolling on our slow demise and Its Criminal!
- March 31, 2018 at 12:33 pm
Unfortunately, some veterinarians (in the very same states that have ignorant doctors), aren’t looking for Lyme,nor testing dogs either, so the real number of K9 cases is probably still wrong too! In Grand County Utah, where I got Lyme (confirmed Igenex after years of illness) they didn’t post my case, the health department insists “we don’t have Lyme, nor the ticks that carry it” and owners of info kiosks won’t allow me to put up Lyme/Tick awareness info. Maybe even worse, some of the Vet Assistants here don’t even know what Bartonella is!!! (at a Veterinary Conference, someone did a study/survey of a bunch of Veterinarians and (forgive my Lyme/Bart Brain) but I think I remember something like 54% of the veterinarians tested positive for Bartonella – and these are people who are supposed to know all the precautions to take regarding cleanliness, since Bartonella can be in the saliva of the cats too.
For further “laughs” about Utah’s negligence, just drive over to Grand County Colorado – right across the border heading to Grand Junction, and along even obscure highway pull-outs they have signs, not always Lyme ones, but warning about tularemia/biting deer flies, West Nile and to take precautions to not get bit.
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