TOUCHED BY LYME: No Lyme in your zip code–revisited
How Lyme denialism imperils your health
One of the first TOUCHED BY LYME blogs I ever wrote back in January 2009 was called “No Lyme in (your zip code here).” I recounted the widespread experience of Lyme patients—in diverse locations—who are informed by medical practitioners that they couldn’t have Lyme disease because it “doesn’t exist” in their city or county or state. Even those with a known tick bite, a bull’s-eye rash, and a laundry list of physical symptoms known to be associated with Lyme disease, are told they can’t possibly be infected. Because (allegedly) there’s “no Lyme” in whatever patch of real estate they happen to be standing in when the conversation takes place.
That was more than four years ago. Since then, a lot has happened to raise the profile of Lyme disease in the public arena. Congressional hearings. Articles in peer-reviewed medical journals. The worldwide showing of the Lyme documentary “Under Our Skin.” Celebrities with Lyme disease speaking out. A lot of newspaper coverage, including a major, award-winning investigative series. Books, magazine articles, TV and radio coverage. The widespread use of social media, especially Facebook, which has more than 1000 groups with the word “Lyme” in them.
Yet, despite this very real and important progress, it’s appallingly clear how much farther we have to go.
Here’s an email I received last week from the mother of a sick child:
In September, my 8 year old got the bull’s eye rash and we went to the doctor who told us “It can’t be Lyme disease because there are no deer in southern California, so there are no deer ticks in Orange County, so there’s no Lyme disease in Orange County.”
Sigh… The right response to that doctor’s statement is: Of course there are deer in southern California, but that’s beside the point. Ticks can be spread by birds, rodents, and other mammals. Lyme-infected ticks have been found throughout the state, including Orange County. And the bull’s-eye rash is like a neon sign saying “Looky here! It’s Lyme disease!”
But the onus shouldn’t have to be on the patient (or his mother) to educate the medical community. Most people who haven’t yet studied at the “Lyme disease school of hard knocks” generally believe what their doctors tell them. And, in this case, doing so seriously undermines their ability to get well. Your best chance of a good outcome with Lyme and other tick-borne diseases is swift diagnosis and appropriate treatment, which is precisely what this eight-year-old boy was denied. And the situation is repeated thousands of times every day, all over the country.
The Orange County mother’s email continued:
My son eventually was tested twice, both negative, after I had done more research and realized there was a reason my son was having weird learning problems which come and go, plus pain, and rage. As for the negative tests, he was put on prednisolone for the ‘allergic rash’ which I have learned was not good. They never reported his rash as a ‘probable Lyme’ case since there’s no Lyme here. So far I have spoken with 14 different medical professionals who have all, even the most open minded ones, had misinformation on the disease. What gives?
This one email encompasses several important points:
The CDC’s recommended initial screening test for Lyme—the ELISA—has been shown to miss as many cases as it finds. A negative test result doesn’t mean you aren’t infected. But doctors don’t know that. By following the CDC-endorsed Lyme guidelines of the Infectious Diseases Society of America, physicians set their patients up for lifelong health problems.
Steroids like prednisolone suppress the immune system, which can worsen Lyme symptoms considerably and screw up the accuracy of the Lyme tests (which measure the body’s immune response to Lyme, not the Lyme infection itself.)
Even if the person tests positive, the CDC requires a complex system for verifying Lyme cases. The result is that thousands of otherwise valid cases of Lyme are tossed out, never showing up in official statistics. (Which in turn feeds the misperception that there’s “no Lyme” in certain areas.)
What gives, indeed?
Frustration with Lyme denialism and the ineffective government response is welling up nationwide and in fact, around the world. In a few days, WorldWide Lyme Protest events are scheduled in 20 different counties and many states of the US. Patients are getting fed up with the how health officials are ignoring Lyme disease and the people who suffer from it.
Click here to find out what events may be scheduled in your area.
TOUCHED BY LYME is written by Dorothy Kupcha Leland, LymeDisease.org’s VP for Education and Outreach. Contact her at firstname.lastname@example.org.
- May 6, 2013 at 10:16 pm
Thanks for airing the dirty Lyme laundry. I’ll direct some new online friends to this. We have been talking about how even family and friends can deny Lyme infection. It’s as if they think wanting to be sick is more likely than being sick with the most widespread infectious disease in the country!
- May 8, 2013 at 6:53 pm
Lyme zip I became infected: 11767. Nesconset, in the Smithtown township of Long Island, NY. I was told by a medical professional, “lyme is only out East” ( the Hamptons). I think not! And later met a realtor from St James, Long Island, NY with lyme and multiple confections. In the past year, I now know 5 of my realtor coworkers with lyme. 3/4 of them can no longer work. Buyers should receive a lyme disclosure when purchasing a home, particularly if pets were there so they have the opportunity to treat premises before move in. This is a legal health issue for the real estate industry to address to warn and protect the buying public.
- May 9, 2013 at 4:11 am
I am a realtor in MI with Lyme. Love to email you. ReneeReyer.com
- May 8, 2013 at 8:11 pm
I have several comments here:
A) to find out the underpinnings of the Lyme Denialism as it is well-worded here, I suggest following the writings and activist alerts of the Alliance For Natural Health USA http://www.anh-usa.org Their work is to litigate FDA and Federal clampdowns on health freedom, particularly as relates to natural therapies. So why is this connected with lyme treatment? Well it may or may not be, directly. However, the fact is that what the ANH proves in its articles and its work, is that the Feds are clamping down on medical practice a la dictatorship style. And to fight that very underpinning fact, we all need to get on board.
(Not intended to divert traffic here from the lyme activism, at all. Just both-and, but not either-or. We need to fight it, at the core).
B) Anyone have connections with underground movie theaters? If not, are you a good salesperson? The gift of gab and connection with people is what it takes to get word around. Contact those underground movie theaters and ask them to show Under Our Skin.
C) Write letters to local newspaper editors (because they print things the mainstream censors) and to college newsletter editors.
D) Contact PTAs at schools, educate them.
Blogs galore, keep it up everybody, yay!
Word will spread, and it will become the 100th monkey.
- May 8, 2013 at 8:21 pm
PS We can also:
Organize speaker events:
A) Community college lectures
B) Library lectures
C) Schools: Parents of young kids need to learn to protect their kids from lyme too. How to dress appropriately if grass is long, bug repellant, etc.
D) County Fairs, have booths (big poster-sized photos attract attention, not fliers and words. Air Under Our Skin on laptop computers at the booths. Hand out fliers with bullet points, not long words, people like to read things easily/quickly at first. Then, more detail thereafter for those who want to learn more).
E) Funding? No I did not forget. See here:
This is the Foundation Center Library’s website. Not a granting entity itself, but a library devoted to nothing but grants. There are grants in every category under the sun. See Foundation Grants to Individuals and Grants for NonProfits, two basic granting series available.
FYI: See the Foundation Grants to Individuals series. I have found that some of the grantors on this site are willing to fund medical things that are rejected elsewhere. Yes, I myself obtained funding for medical coverage based on donors found on this website. It’s for real and has been around for decades, is very well established and is the prime go-to source for many nonprofits.
Email the librarians to learn about free classes in how to write a good grant proposal.
Subscribing to the Foundation Grants to Individuals series costs $20 per month, but some nonprofits and libraries subscribe and make the access available to the public, for free. Email the librarians to find out about the link where this information is available, in your area.
- May 8, 2013 at 8:28 pm
Sorry for a third message folks, don’t mean to dominate. I just wanted to add that county fairs (where people are fun and recreation-oriented), may perhaps not be as successful as health fairs, green festivals, etc which would likely get a better response.
The more visual the booth, the better. People are not reading oriented, the big posters and Under our Skin + other movies (possibly projected to be seen by passersby outside the booth, where at all possible, particularly if it is possible to hang a laptop and show the movie at eye level) would attract attention and get people to stop and enquire.
- May 8, 2013 at 9:10 pm
You ask what gives? We give! We give information to these doctors, now! That’s one of the tasks of this time. Once we’re educated to understand what’s going on, we should not be accepting of these inaccurate statements and we the patients, we the people, need to tell the doctors the correct information. I am doing just that and I am getting doctors and their staffs educated!
And I do it in a specific way as of now. I make it more personal, as in you and yours could get this very easily and here’s how you could get it – then I tell them about where the ticks are – ie, on vegetation, wood and animals, etc. It’s helpful if you know some actual stats for your area, like what percentage of ticks are infected, if your area has been tick-dragged. If not, then I guess you don’t know!
I also bring brochures with me to any medical appts, prepared to give them to the doctor(s).
- May 8, 2013 at 9:22 pm
I’ve been dealing with that concept for years, so it’s some consolation to know that others also face the “No Lyme in [our] zip code” response, and reaffirms my responses when I inform people, even if it takes a good ten minutes.
We used to spend summers in northern Fairfield County, CT, where, even 15 years ago, residents would regularly do a month of doxy at the end of each summer — as if a month is enough, and as if ticks only exist during the summer. But at least they had some awareness. When my daughter and I were both diagnosed, everyone in the world was surprised. Her doctor, with a house near Woodstock, NY, said, incredulously, “Lyme??? Where’d ya get that??” (Duh!!!!) And when she was invited to a friend’s weekend home last year in East Hampton, Long Island, the friend’s mother, after being asked about bringing bug repellent, replied with utter confidence “No, there’s no Lyme out in East Hampton.” (Double “duh!!!!!”) It is amazing how many people live in blissful ignorance, yet walk around with the very symptoms they’d never associate with Lyme and its associated infections. Only horse people seem to have any awareness — SOME of them.
But the REAL tragedy is the huge majority of doctors with absolutely no clue. None whatsoever. Patients waltzing in and out with all the symptoms, but if that ELISA shows fewer than 6 of 10 bands the diagnosis is “negative”. Unfortunately for their patients, it’s “prognosis: negative.” (Like the first person who declared me cured, Dr. GW.)
It’s NIMBY all over again.
- May 12, 2013 at 10:16 am
34209 Bradenton, Florida, You can’t “get” Lyme Disease here either, or at least nobody knows how to treat it.. I probably didn’t get bitten in Bradenton. We traveled and hiked the Shanendoah Forest in 2010. After the rash, the headache that lasted forever, the right eye that wouldn’t close, the Bell’s Palsy, the new rashes, the knee surgery, polymyalgia rheumatica diagnosis, I was tested for 18 different diseases and syndromes. All were an absolute NO except I was 2 bands shy for Lyme. My doctor said he’d never seen a case of Lyme. My orthopedic doctor, who also had never seen a case of Lyme, had listened to a Lyme program on NPR, and referred me to infectious disease specialist. No tests, this guy just looked at original tests. Only with my husband’s desperate pleading because I could no longer walk, did he agree to give me the “treatment” for Lyme, because the treatment wouldn’t hurt me if it wasn’t Lyme. I was a miracle in 12 hours. But he said since I didn’t have Lyme, he couldn’t continue, and sent me to a rheumatologist, who has had me on Prednisone for 18 months, treating me for Polymyalgia Rheumatica and Fibromyalgia, until I wised up from a classmate who turned me onto all these websites. Glad to finally find people who are like me and willing to share.
- December 5, 2013 at 8:25 am
I grew up in Bradenton, Florida and live just south of their in Ellenton. I was just recently diagnosed with Lyme through Igenex after spending the past 7 years with strange neurological symptoms. We spent a lot of time in the Smoky Mountains growing up and that is the only place I would point getting bit, but I don’t recall ever getting a rash only getting very sick in 2006 and everything going downhill from there.
- May 16, 2013 at 10:31 am
Some doctors are resistant to being “educated” by people who are not in the medical field. I have brought along the California Health Department flyer which says Borrelia Burgdorferi has been found in almost every county in Cal. It describes symptoms and has pictures but still, it can’t be Lyme because Lyme is very rare. (Note – not non-existant now, just rare. We could call this progress, but still no treatment.) Of course my kid couldn’t be one of the unlucky few, rare things don’t happen in this zipcode. Nevermind that this county reports B just 18 miles South. Nevermind that the neighboring county reports Bb just 18 miles North. Those ticks know better than to travel into OUR zipcode. They’re not welcome here. No dirty bird with a tick would ever dream of stopping in OUR parks to dine and shed a bug. The mice around here don’t consort with that sort of mouse. We run a tight ship and keep our critters clean of infectious diseases. All Ixodes ticks just jump right over OUR zipcode. They keep their Thomas Guides handy so they can be sure to land outside our neighborhood. Don’t be ridiculous, WE don’t have Lyme here.
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