TOUCHED BY LYME: New CDC Lyme figures still ignore important issues
The CDC upped its official count of Lyme disease cases in the US to 300,000, ten times the previous number.
Something that’s always been a thorn in the sides of Lyme patients and the people who love them is the CDC’s screwy way of counting Lyme disease cases. Or should I say undercounting? Because the CDC has for years used such a rigidly narrow standard of what is permitted to be officially reported as Lyme disease, untold thousands (tens of thousands? maybe hundreds of thousands?) of cases are routinely kicked out of system, never to be heard from again.
(Just one example: New York state’s mid-Hudson Valley has one of the highest rates of Lyme disease in the whole darn country. But because local health officials don’t have the money to perform the CDC’s required system of validating Lyme cases, they estimate the numbers. Which the CDC won’t accept. So, those numbers show up–nowhere.)
So you think we’d be happy that the CDC issued a press release today saying that instead of 30,000 cases a year that they’ve been reporting all along, they think the number is more like 300,000. (“Happy” is too strong a word for my own state of mind about this. “Guarded” “questioning” and “hmm, wonder what they’re really up to” is a more accurate description of what I’m feeling.)
You can read the CDC’s press release here. I participated in a phone call with Dr. C. Ben Beard of the CDC about an hour ago. We all had lots of questions. Basically, Dr. Beard summarized what’s in the press release, and told us more information would be available later. Here are questions I raised that I still think need answering by the CDC:
The new number supposedly came about because of three different studies: in one, the CDC looked at insurance company data for the number of people who have been diagnosed and treated for Lyme disease. My reply: Many people with Lyme don’t get diagnosed properly in the first place, and the insurance company won’t pay for treatment. So huge numbers of cases don’t show up here.
Second study: the CDC looked at data from certain laboratories, and counted how many positive Lyme tests. (Igenex wasn’t included. Need I say more?)
Third study: self-reported data from an admittedly small sample of people who said they had been DIAGNOSED with Lyme disease. (same complaints as study #1, along with many other questions about sampling techniques.)
It will take us all a while to process this information, look at the information they send us, and figure out what it really means. But here’s something to chew on: if the above referenced studies (with their huge deficits) could encourage the CDC to increase the number by a factor of 10, how many annual cases of Lyme do you think there REALLY are in the US? A million? Two million?
And since the IDSA Lyme guidelines (endorsed by the CDC) restrict treatment for Lyme patients, many of those people are still ill years later. How many millions of sick people are we really talking about?
Food for thought.
TOUCHED BY LYME is written by Dorothy Kupcha Leland, LDo’s VP for Education and Outreach. Contact her at email@example.com.
- August 19, 2013 at 1:00 pm
If the CDC did an honest study and, because of the results, it became known how they’ve conspired to keep the real numbers down, there would probably be a Congressional hearing. This way, they can appear to be conscientious and updating figures. As bad as a ten-fold increase is, one hundred-fold or more is criminal.
- August 19, 2013 at 11:42 pm
Agreed. And I think anyone discussing Lyme disease has to make it known to others including the media just how cases have been counted up to this day – and mention how budget cuts have affected surveillance and reporting before this CDC press release even came out.
What prompted these studies now – what prompted the effort to get a better estimate? Does anyone know which studies these were and who conducted them? Lyle Petersen?
Having this data from insurance companies, doctors, and labs gets us closer to a real estimate – and we know it’s not the entire picture. But look at it this way: Anyone who sees this announcement from the CDC is going to at least begin questioning how many people they know have Lyme disease, and perhaps even look at their own symptoms and wonder if that’s what they might have.
This may not catch every case out there – and certainly late stage cases that were not diagnosed early on are a huge issue – but if people hear that 300,000, that at least gets their attention. And this has gotten a lot of attention in the news in the past 24 hours.
- August 19, 2013 at 11:59 pm
This report sounds about right in same sense that ISDA and CDC won’t admit long term treatment for Lyme patients who have gone undiagnosed and treated for sometimes years, does help many people to regain a quality of life back and even save many peoples lives. It is my belief (and I am guessing many other people’s) that the FDA, ISDA and CDC do not want to admit there is a huge epidemic out there and by doing so, they keep people sick and keep them seeking help for their disease and symptoms while spending thousands and thousands of dollars for out of pocket for treatments that don’t most of the time work. They are criminals with no consciences and responsible for keeping people very sick and letting us suffer and even die. The government needs to make this sin to mankind stop!
- August 20, 2013 at 4:16 am
Thank you for writing this. I have been reading may of the articles on the CDC report and have been experiencing many levels of anger and frustration as I am doing so. While I am grateful that this will (perhaps) raise awareness that Lyme is so much more prevalent that the CDC admits, it addresses none of the problems the Lyme community deals with daily. Many of the articles minimize Lyme treatment entirely. As a Chronic Lyme patient, wife to a disabled Chronic Lyme patient, and mother to 2 Chronic Lyme teens (and I am not going to even bother listing all of our co-infections haha!!), I get so offended by the ignorance shown in so many of these news reports. Thank you again for addressing what really needs to be said.
- August 20, 2013 at 11:57 am
All very excellent points, Dorothy. Thanks for a good article.
- August 27, 2013 at 2:16 am
Definitely moving in the right direction in terms of catching people’s attention to what’s going on! I’d like to add that when we’re thinking about how many cases there REALLY are out there, that we think globally. This is affecting most countries in the world, so many people who have no clue whatsoever nor access to care, so many animals, so many insects – that’s the world we live in and I’d like to see it all included in discussion for eventual worldwide solutions re illness eradication and restoration of a healthier world.
- September 1, 2013 at 1:02 pm
Please push for more accurate and reliable testing for LYME disease. I have been suffering since 2004. I have visited over a dozen physicians, some who have helped a little and some who have completely denied my illness. I am lethargic, I am in pain, my joints hurt. I tested positive on only a few of the bands for the Western Blot so per CDC guidelines that wasn’t good enough. Why is 5 bands good enough but 4 bands is not good enough? There is such enormous public outcry for this disease, please help us who are suffering. I recently captured and sent in ticks to the Department of Agriculture here in MICHIGAN – they were not only identified as Ixodes scapularis (the deer tick) but they tested POSITIVE. So clearly the people need to take matters into their own hands because the CDC continues to claim that Lyme disease and other associated tick-borne diseases don’t exist in Michigan, when I can prove it from the ticks in my own backyard.
- November 4, 2016 at 7:11 am
what can we do as “lyme suffers” to try to move the cdc & doctors forward to get educated reguarding lyme & co-infections, so they can diagnose and treat people affected. Eight years of suffering life & pain, I want to do something, I just don’t know what!
- March 8, 2018 at 6:19 pm
You are right on the money Dorothy! And far kinder in your writing than I would be. 3 ridiculous study groups that are obviously flawed before they start. Another question that I would like to see asked is what about those of us whose bodies have been permanently ruined because of improper treatment based on the guidelines established by the IDSA and supported by the CDC? It’s been a brutal battle for me but I have gotten over the tremendous hurdle of coming to terms with the fact that I will NEVER be the person I used to be. A major battle inside my head to come to terms with that fact. If correctly diagnosed ( like many, I was not) and aggressively treated I believe in my heart that I would be a much different (and much happier) person today. It is what it is….but I know who did this to me…and they do to. Kind of sad really. As with most things in this world, it does not take a genius to figure out. Follow the money. Who made money from the guidelines established and who would it have cost money if we had been treated like say…a cancer patient? It’s always about the money.
I’m not sure if there is a way to design a study that would give an accurate picture. My analogy would be to stand on the highway and count red cars. Then be asked “ how many cars went by”? Well if you only counted the red ones because those were the “guidelines “, how could you possibly know?
Keep after them!
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