Q: My doctor told me that Lyme disease is very, very rare in Georgia. But I know several people who got it here. Is it really rare?
A: While Lyme disease has often been reported as rare in the Southeast, we're not aware of much scientific data that might support this conclusion. (In fact, read our Lyme in the Southeast page for evidence pointing to the opposite conclusion!) County by county, very few scientific tick-flagging studies have been undertaken across the South. (Even if they were, for some reason, Georgia has decided not to count counties as endemic if a known tick vector tests positive for Bb in a county, contrary to the CDC’s Lyme Disease Case Definition reporting criteria.) One study collected about 700 ticks over a few years from Georgians across the state. A random tick here and a random tick there over years, doesn’t prove prevalence in counties, nor does it address the problems with various strains and possible tick vectors. Studies in our region involving human Lyme patients are even more uncommon.
This impression of Lyme being rare may have to do more with issues involving reported case numbers in our region, instead of true scientific evidence. We really need to do more independent research before throwing the proverbial baby out with the bathwater, by classifying Borrelia burgdorferi as “rare” in Georgia. (For more on this issue, see next question/answer.)
Q: If we have so many people contracting Lyme disease in Georgia, why aren’t these cases being reported? When I look at the Georgia statistics on the CDC’s website, I just don’t see the numbers.
A: You’re right. It does appear that Lyme disease in Georgia and across the Southeast is rare. But based on the number of people we speak to who have contracted it here, we believe there are some big problems contributing to the underreporting of this infection.
First, the Georgia Division of Public Health has not counted our Lyme disease cases over the years using the CDC’s standardized national Case Definition that many of the northeastern states adhere to. Instead, they declared the entire state of Georgia non-endemic, despite the numerous southeastern counties over the years that have met the CDC's case definition of being endemic. This poses a significant problem because Georgia and other southeastern states have not acknowledged and reported cases using the same methodology that other states do.
Seeing the small number of reported cases on the books may also perpetuate the problem by leading many medical practitioners to believe Lyme is really rare in our region. They may not consider looking for Lyme disease in ill patients. Some healthcare providers don’t seem to be aware that Lyme disease is found here at all. If they do test a patient and see positive results; they may tend to believe, due to the low case numbers on record, that the results are a false positive and then choose not to report it. This further contributes to the overall issue. Although Lyme disease is a very serious illness, reporting of the infection is passive in Georgia.
Finally, diagnosing Lyme disease is very complicated. Half of all Lyme patients don’t recall a tick bite, and reportedly 40% - 50% never get a rash from it. Lyme disease tests are very insensitive. This may be partially due to the many various strains of the bacteria found in our region - the tests may not be picking these up. Other problems include testing before detectable antibodies have had a chance to develop in new patients and even taking antibiotics, which can alter the tests. Plenty of research has shown that the tests miss many positive LD cases, not only here, but across the nation. Sometimes a Lyme patient may have a test that is not “CDC positive”, meaning it doesn’t meet reporting criteria, but does indicate exposure to the Lyme infection. Therefore, Lyme disease may be identified and treated if clinically diagnosed with signs and symptoms, but not reported as a case.
There are definitely many issues that need to be addressed regarding the underreporting of Lyme disease in our state and across our region. But that doesn’t mean that people are not really contracting Lyme disease here. For further details, please read our Lyme in the Southeast page.
It is urgent that we help get the word out to citizens to help prevent tick-borne diseases from occurring in the first place. We must educate and encourage people in our region about personal protective behaviors they can develop to help stop these illnesses.
Q: I read that Lyme disease in the South is much milder than it is in people up North. Is this true?
A: Although it has been reported that the symptoms of Lyme-like illness in the South appear to be milder than in cases in the North, we at the Georgia Lyme Disease Association have heard from many seriously ill and permanently damaged Lyme patients that would tend to suggest the opposite, at the very least, in many cases. We’ve met people with lesions on their spines and brains caused by Lyme disease, as well as people on oxygen, in wheelchairs, walking with canes, crippled, and blind. Some report severe neurological problems and painful arthritis; a few have had heart block due to the Lyme infection. There are many who have such chronic fatigue and muscle pain, they cannot participate in activities they formally enjoyed. We don’t consider these symptoms mild.
One (reportedly flawed) study that we’re aware of indicated that Lyme symptoms in STARI patients (Lyme-like illness in the South) were not as severe or extreme as those seen in Northern Lyme disease patients. (Read the chapter about Lyme in the South in Pam Weintraub’s book, Cure Unknown, for more details.) To our knowledge, no other long-term study tracking human southern Lyme disease patients and their symptoms has been undertaken. And since many spirochetes are able to go dormant, only studies which spanned many, many years could truly determine how serious the symptoms of southern Lyme disease may be.
With the huge number of unculturable southeastern Bb strains found here, we could discover that some strains may cause no illness or minor symptoms, while others may cause even more severe symptoms than those seen in Lyme disease patients up North. The point is, until further studies have been done, nobody can say for sure. To assume anything at this point could seriously jeopardize the health of our citizens. This is why we support the idea of funding more independent research studies in the Southeast - we need to seriously investigate the role these strains of bacteria could play in human disease.
Q: Are the people who come forward with Lyme disease just hypochondriacs? Maybe they just want to be ill.
A: The Georgia citizens, who have acquired Lyme disease here and have contacted us, have been from all walks of life. Many were treated at the first signs of illness and report no further problems. Most of the chronically ill patients tell us they once enjoyed healthy, full, and active lives before contracting Lyme disease. The patients we’ve heard from are respected, rational and credible individuals who have held positions as pharmacists, inventors, dentists, attorneys, realtors, researchers, school counselors, mechanics, football players, librarians, professional golfers, nurses, teachers, and even employees of the public health care system. The hardest to hear about, by far, are the children who once led such active lives and are now struggling each day. Many have had to discontinue sporting activities and can no longer attend public schools. Often children with chronic Lyme disease are home-schooled because they are too ill to keep up.
We find it particularly hard to believe that most happy, healthy children who were previously participating in activities with their friends would stop and make up an illness because they “want” to be ill. While any child might fake being sick on occasion to get attention, faking symptoms over weeks and months would be a pretty big feat for a child to pull off. Similarly, we don’t feel that the adult patients we talk to are simply hypochondriacs. There is certainly enough documented scientific evidence worldwide to prove that we should be taking the reports of ongoing symptoms from these patients seriously.
For a really great article, read Pam Weintraub's October 9th blog on Psychology Today's website:
Q: I had a tick bite this spring. About 10 days later, I started feeling funny and had a big rash where the tick bit me. The rash went away and then I thought I just had a virus. Now I feel worse...my whole body aches and is tingly. I’m really tired and my joints hurt all over. I went to the doctor and asked for a Lyme test. The first test came back positive; the second one was equivocal. The doctor said it’s not “CDC positive.” He said it’s a false positive and there’s no way I have Lyme disease. What does “CDC positive” mean? What’s the difference between that and just a regular positive test?
A: The CDC implemented reporting criteria years ago to track cases. In doing so, they require that two separate tests be used in order to verify that reported cases of Lyme disease meet their criteria, if the rash is not documented in a patient from an endemic county by a physician. The first test is a screening tool; the second is called a Western Blot. The testing is very problematic.
The CDC has always reiterated on every case definition through the years that their surveillance criteria should not be used to diagnose and treat Lyme disease. They have consistently stressed that Lyme disease is a clinical diagnosis. Simply because a Lyme disease case doesn’t meet the reporting criteria standards, doesn’t mean it can’t be a true case of the infection that requires treatment. While sometimes Lyme tests can produce false positive results, many times false negatives are seen, as well. This is exactly why the two-tiered testing system advised by the CDC is meant for reporting cases, not to clinically diagnose and treat Lyme disease.
If a test isn’t “CDC positive”, yet the patient has a rash and/or history of a tick bite and symptoms, most physicians we’ve talked to agree they would choose to err on the side of caution and treat. In your case, it sounds like you also may have some elevated antibodies against Bb showing up, providing even more evidence that something is going on.
Q: Is Lyme disease really chronic? Where can I find information about this?
A: Although there is a lot of material out there, we suggest reviewing Dr. David Volkman’s testimony on the Infectious Diseases Society of America’s website. It can be found on their Lyme disease page (Review panel hearing link) by clicking on the TV to watch the archived webcast. Dr. Volkman has been a bench and clinical Lyme disease researcher since 1985 and, in addition to having credentials a mile long, he knows his stuff. Other scientists and doctors who presented research about chronic Lyme and poor testing methods can be found there, too. Also try Lymeinfo.com and look under the medical summaries documenting persistent Lyme borreliosis. PubMed is a good source, as well, but you’ll have to use many various search terms to find all the research articles. See our Resources page for links.
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Did you know that our own
is home of the Smithsonian Institute's
National Tick Collection?
There are over 1 million tick specimens in the collection with representatives of 850 tick species. You can arrange a tour of the collection with the Institute of Arthropodology and Parasitology (IAP) on Wednesdays, but call first! Click the link below to learn more:
With luck, while you're there, you'll get to hear about the many strains of Borrelia burgdorferi (Lyme disease bacteria) that our scientists have found in the Southeast!
June 30, 2008
August 30, 2009
Stars and Stripes
April 23, 2009
Future Drugs Ltd
Samuel Shor, MD, FACP
Journal of Chronic Fatigue Syndrome, Vol. 13(4)
R. Stricker, L. Johnson
(now here's a good plan!)
On August 24, 2010, Newsweek featured an article about Lyme disease, My Father’s Mystery Illness, by Russ Juskalian. Unfortunately, it echoed the same tired slant and ignored the significant number of scientists, medical providers, advocates and patients with a different take on Lyme disease.
What is counted as a Lyme disease case in the Northeastern United States is not in many states in the South. True Lyme disease prevalence in our region remains unknown.
-National Library of Medicine
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