TOUCHED BY LYME: CDC's "Lyme stories" leave out the big picture
A new feature on the Centers for Disease Control’s website takes a narrow view of Lyme diagnosis.
The CDC just started something new on its website called “Lyme disease stories.” As I write this, two have been posted so far. One is a video focusing on a man named John, who started feeling ill on a Boy Scout camping trip with his son. When he returned home, he noticed a bull’s-eye rash on his hip. He went to the doctor, who started him on doxycycline for Lyme disease. Here’s what happened next, in John’s own words (yellow highlighting is mine):
He told me that it’s better to go ahead and treat it, that there wasn’t a need at that moment to do a test given how it was presenting and how it was feeling. He said a round of doxycycline might be the best method to help me out. The first couple of days afterwards I was still kind of feeling achy. I missed one day of work on Monday feeling kind of feverish and achy. But I was back at work by Tuesday. By the next Saturday felt fantastic. I was back to my old self again.
The second story focuses on a woman named Linda, who reports that she has had Lyme disease twice. The first time, she didn’t see a tick, but developed two bull’s-eye rashes, and went to her doctor for a Lyme test. Here are her words, with highlighting from me:
About 5 days later, before the test results even came back, I began to develop flu-like symptoms. I remember the symptoms coming on quite rapidly one morning. By early afternoon, I was quite sick with a high fever. It was a Saturday, so I drove myself to the afterhours care at our HMO. I remember having a horrible headache; the worst one I have ever had and all my muscles hurting. Because I was so ill and all my symptoms were consistent with Lyme infection, the doctor put me on antibiotics right away–even though the test results were not yet back. The test did eventually come back positive. My symptoms cleared up very quickly, within a couple of days. I have no lingering symptoms at all.
I got Lyme disease a second time about 3 or 4 years ago. I had what appeared to be a scab on my hip that wouldn’t go away. I finally picked the scab off; later I realized that the scab was probably a tick. I had a small rash that developed around where the scab had been and showed it to my friend who is a physician’s assistant. She suspected that it could be Lyme. I made an appointment with my doctor who ordered a test. He prescribed antibiotics even before the test results came back positive. Because I took the antibiotics right away, I never got sick like I did the first time and never had any other symptoms.
Isn’t it amazing that all three instances involve patients getting immediate Lyme treatment without waiting for test results? And, in all three cases, the treatment apparently worked.
I don’t see people like John and Linda at Lyme events. Because (if we take the CDC at its word) prompt and appropriate treatment cured them. They don’t need to even think about Lyme disease any more, let alone show up at support group meetings or patient conferences.
I hear different stories in the Lyme community: Doctors who won’t even test for Lyme, let alone offer treatment, because “there’s no Lyme around here.” People given ELISA tests in the early stages of infection (even though it can take weeks to produce measureable antibodies) and then told their negative test results “prove” they can’t possibly have Lyme. Treatment denied even after a positive test because “this has to be is a false positive.”
And that’s not even getting into the issue of people who have been sick and misdiagnosed for years, and have developed a whole range of systemic problems. Or the complexities raised by coinfections.
The two stories the CDC posted are in fact strong arguments for prompt treatment following a clinical diagnosis of Lyme (based on symptoms and medical history, not lab tests.) In both cases, the patients exhibited bull’s-eye rashes—clear evidence of Lyme disease. Their doctors were right to treat them immediately.
Linda had a bull’s-eye rash and flu symptoms. Her doctor started antibiotics. What if her test had subsequently come back negative? (The ELISA is known to miss as many cases as it finds.) Would the doctor have stopped the treatment? Many do.
And, of course, not everyone with Lyme develops a rash. The CDC doesn’t address that scenario. And if you have no rash and a negative Lyme test? What then?
I’ll tell you what happens to those people. Treatment is denied, their opportunity to nip this insidious infection in the bud is lost, and their health spirals dramatically downward.
So, CDC, you’ve started the ball rolling with these Lyme stories. You’ve shown us two people lucky enough to be properly diagnosed and promptly treated.
Now show us the bigger picture. The untold thousands of sick people routinely denied early treatment that could save them from a world of hurt. The young people robbed of their childhoods, and the high price paid by their families and the school districts charged with educating them. How the CDC’s own Lyme surveillance criteria is wrongly used to deny treatment to Lyme patients. (I can give more suggestions if you need them!)
Now that would be a story worth listening to.
Click here to see the CDC’s page.
.
TOUCHED BY LYME is written by Dorothy Kupcha Leland, LymeDisease.org’s VP for Education and Outreach. Contact her at dleland@lymedisease.org.
Perhaps we could start our own video collection of Lyme disease patients countering the pretty picture the CDC paints. Title it something like, ‘CDC: Reality Check on Missed Lyme Disease stories’.
Thank you for the article. As always very informative.
Mother of 19year old Nicole with Lyme/bart/babs & 1 minute short term memory loss. So many missed opportunities due to lack of physician knowledge, flawed testing & ego
I agree with you there. It would be nice to have been able to upload my Youtube video of my 12 year old who has been suffering from multiple symptoms for 3 years and who is still not better. If she was originally treated correctly we might not be in this boat. It is like the CDC wants to only show the people who are better and not the majority of Lyme sufferers.
http://youtu.be/hG7-8VU7NmU
Ty Dorothy.
I appreciate how you present facts and then back them up with more facts that are simply reflective of the truth in terms of what science and case history has shown us. My thoughts exactly.
As I was reading (and very thankfully) the successful clinical judgment and treatment applied for these two patients, my next thought was – ‘great! good for the doctors! Great assessment; great application!’ I then wondered what their differential approach is to patients that present in their office with same symptoms, no bullseye rash.
I am not suggesting that same symptoms means automatic assumption that it is Lyme. Not at all. However, b/c we know that Lyme is problematic at all stages, I would like to hear more. ie: Whether physicians are considering treatment for patients with like symptoms, where an appropriate differential has ruled out other obvious possibilities.
I was also curious as to what treatment dosage was used for these two patients?
I appreciate your highlights, as well. Telltale to conversations that we have experienced from ID physicians that attend CME Lyme and Tick-Borne Disease Conferences offered by accredited speakers, where they quietly admit they are seeing patients frequently in need of a diagnosis (hence, the motivation to become educated on a broader spectrum) and not always successful in their own society’s treatment approach, when they have ruled out other key factors and narrowed the diagnosis to Lyme based on clinical judgment.
I am interested to see how they will selectively share more stories. And I am very interested to see your ongoing updates related. Sometimes, in effort to defend a position, the obvious is proven.
The tide… it will continue to turn.
Blessings, ~d
Ugh this kind of stuff is what the public will believe and they will think everyone with Lyme should be cured from a few days of Doxy. I’m sure many of us here have been there and done that with Doxy and years of antibiotic with no luck. More hand-picked stories and lies. Shame
success stories indeed, there are far more UnSuccess stories, where are they CDC?
I just removed a Fellow Traveler while in on travel in Maine. A hospital nurse correctly suggested their urgent care clinic over the ER, but said I’d have to be tested before treatment. Fortunately,the UC doc gave me a preventative round based on < 72 hours since removal, and warned I had to watch things for the next month. We did not ID the tick; it meant extra delay, and Maine no longer tests Ixodes for Lyme, they just assume +. FBOW, she left testing me to my home doctor, who said a bull's eye always shows and did nothing.
Lyme and Babesia are problems in Maine and many doctors here don’t seem to have a lot of good knowledge regarding tick borne illness. More doctors in Massachusetts and New York know what to test for and what labs have better sensitivity. As the problem increases the education does too. Good luck.
I think Chris Powell’s idea is fabulous! I know that there are videos out there on YouTube, but titled like this and made fairly short and a lot of them put together with this sort of title would be excellent. I’ve never been one to want to put my face and talk out there in YouTube, but for a project like this, I would participate. I know a lot if other people who would too. Just say the word!
http://community.advanceweb.com/blogs/nurses3/archive/2012/08/06/the-lowdown-on-lyme.aspx
A new tick-borne disease that may be stealthily infecting some Americans has been discovered by Yale researchers working with Russian scientists.
The disease is caused by a spirochete bacterium called Borrelia miyamotoi, which is distantly related to Borrelia burgdorferi, the spirochete that causes Lyme disease.
B. miyamotoi has been found — albeit relatively rarely — in the same deer tick species that transmit Lyme, and the Yale researchers estimate that perhaps 3,000 Americans a year pick it up from tick bites, compared with about 25,000 who get Lyme disease.
In Russia, where a team in the Siberian city of Yekaterinburg developed a test that can distinguish miyamotoi from other tick-borne spirochetes, it caused higher fevers than Lyme disease typically does. In about 10 percent of cases, the fevers repeatedly disappear and return after a week or two.
Since the disease was only recently discovered, it is unknown whether it does serious long-term damage, as untreated Lyme disease can.
But he said doctors might consider the new infection, especially in patients who think they have been bitten by ticks, come up negative on Lyme tests and have recurrent episodes of fever.
B. miyamotoi does not appear to cause the “bull’s-eye rash” that helps doctors diagnose Lyme disease, the Russian team found.
“People shouldn’t panic,” Dr. Krause said. “And they also should not jump to the conclusion that we’ve found the cause of chronic Lyme disease. It’s not highly likely, but it’s possible. We just don’t know.”
This sure smacks of medical propaganda. Reminds me of a bit of what the government keeps trying to tell us, that everything is fine and that we don’t t need to worry , that ‘they’ will take care of things and know better than we do about ourselves.Why only two stories? .
I have chonic lyme disease that started in 1992. I knew nothing about ticks and never had a rash. I was always a very healthy person. I started to have diffuse pain everywhere with severe headaches, neck pain (for which my MRI was negative), sweats, chills, nerve pain, balance problems, depression, anxiety etc. In 2001 I took a tick off of me that had been on for at leasta 48 hours. It was so small I could hardly see it. My symptoms went haywire and I asked my PCP for 6 weeks of doxycycline. He did not want to give me 6 weeks. I went to 4 prestigous hospitals to “so called lyme specialists” and was told I had fibromyalgia and not lyme disease. I only had one positive lyme band, but the lab I went to did not test well. I finally found a doctor who told me I wasn’t crazy and put me on antibiotics long term. I am still on them and when I go off my symptoms return and I can’t live like that. I feel sorry for people in my shoes who don’t get their treatment in time.
Shame on you again CDC!!!! You are running scared and trying to protect whatever INTERESTS you have because the TRUTH about Lyme disease and the long term effects of it are not in the stories. You are trying to keep the public ignorant when there are alot of us how there who have experienced the excruciating truth and are telling our stories. The truth is coming out hard and fast you so you wasting your time and proving your bias. Shame on you. You do not have the best interests of patients in your information.
I have had 6 cases of Lyme disease, the first with a bulls eye rash, to teach since 1980, when little was known about it. Was not able to find a doctor to treat it for 6 months, as I was told to wait 6 weeks before testing, and then doctors were booked up. Despite extensive neurological damage — losing my short-term memory, losing hearing in the upper decibels (was told I was just aging), losing my sense of balance, headache and stiff neck, and extreme fatigue was told by the doctor “I barely had it” from the ELISA test — like being “barely pregnant” I asked? Multiple rounds of doxycycline and amoxycillin followed, which corrected nothing. One Western Blot test, declared negative by the lab and doctor’s office was deemed positive when double checked with the lab and another doctor. Have been able to function for 30+ years by the extensive nutritional support of functional/ complementary medicine. Very expensive, did not reverse the issues except fatigue and mental fog to some extent, but have survived to teach, produce books and documentary films with great effort. Would not wish Lyme on a worst enemy.
I get very angry every time I see a CDC website regarding Lyme dis-
ease. There is so much misinformation and outright lies on these web-
sites. The IDSA panel and the CDC are nothing but stalking horses for
special interests.
I recently had a so-called infectious disease specialist in San Angelo, Tx dismiss a positive PCR test and stubbornly insist I couldn’t have Lyme
disease. I have been suffering for decades from a large number of symp-
toms suggesting a possible borrelia infection.
The sad reality is that far too many doctors regard the CDC as God and
they don’t realize they have been brainwashed bigtime by people who are
placing their own selfish financial interests ahead of the truth and the
national interest.
A petition is currently being circulated on the internet to get President
Obama to take action to overturn the outrageous IDSA Lyme diagnosis
and treatment guidelines which have severely restricted treatment options
for Lyme patients while causing many doctors to simply refuse treatment
for those who have Lyme disease. It’s imperative we get as many signatures as possible as quickly as possible. Information about this
petition and how to get your name added is available at Jenna’s Lyme
blog. I signed the petition last night and got someone from a local diag-
nostic lab to sign it this am. I have no affiliation with Jenna Smith’s blogs.
I am simply doing everything in my power by whatever means to correct
a grave injustice inflicted by the government.