Thursday, July 24, 2014

Misinformed Medical Providers Lead to Misinformed Public

At GALDA, we don't like to bash medical providers but there is so much potentially harmful, misleading information in the article, Monitor Board of Contributors: Know your biting bugs (and how to protect from them)! published online this week by the Concord Monitor, we feel compelled to warn the public.  It's quite troubling that the article, full of inaccuracies, was written by a pediatrician and president of Concord Pediatrics.


In the piece, Dr. Patricia Edwards advises readers not to worry about wood ticks or dog ticks claiming these are "only annoying."  It's hard to imagine that this physician has never heard of the potentially fatal Spotted Fever Rickettsiosis and the other serious diseases spread by different tick species (including the "dog ticks" she mentions).  Isn't she aware that tick-borne disease science is constantly evolving and that an alarming number of pathogens have been discovered in ticks in recent decades? In fact, even Borrelia burgdorferi (Bb) - the organism that causes Lyme disease – has been documented in other tick species including dog ticks and lone star ticks.  Research shows that the transmission of Lyme disease appears to depend upon the host, meaning we cannot rule out transmission to humans by other tick species.  People should never be advised to be dismissive about a tick bite due to the type of tick removed. 

Next, Dr. Edwards should know, Ixodes scapularis ("deer ticks") do not get big enough to see "within hours."   Typically, engorgement happens rather gradually as they feed over several days.


  -courtesy Bugguide.net

The doctor also writes that a tick must be attached for at least 36 hours to transmit Lyme disease (LD). Though this is often touted by many, it's not necessarily true, as demonstrated in studies published long ago.  Some studies suggested that ticks may sometimes transmit LD in less than 12 hours.  In addition, some tick-borne diseases, such as Rocky Mountain Spotted Fever (RMSF), are known to be transmitted in only a few hours.  RMSF and other tick-borne infections may prove quickly fatal. 

Readers must be advised to seek immediate medical attention should symptoms develop following any tick bite, no matter how long the tick may have been attached.  Medical providers must remember these other diseases may be transmitted more quickly and by various species of ticks.  Early diagnosis and treatment can mean the difference between life and death.

Dr. Edwards advises removing a tick with your fingers.  NEVER, EVER do this. (Proper tick removal instructions appear at the bottom of this article.)

Ticks may have infectious secretions that shouldn't be touched with bare hands.   In fact, Borrelia burgdorferi has been documented in tick saliva and, more recently, in tick excrement. See article linked here:



Dr. Edwards mentioned prophylactic treatment after a tick bite, but be careful.  A one or two dose Doxycycline regimen is often recommended by the IDSA as a "prophylactic treatment" to prevent Lyme disease, however, this treatment has not been proven to be effective and is highly controversial.  This may prevent a rash from forming, but may not stop the actual infection.  Plus, a recent CDC study proved that trying to prevent Lyme disease by taking 1-2 Doxycycline doses is a really bad idea.  Here's the link:


(As an aside, another serious concern about the 1-2 dose Doxycycline regimen is that taking too little of an antibiotic during the early stages of infection may stop antibodies from forming against the Lyme bacteria, thereby causing a person to test negative by antibody test, even if they are still infected.  This may create a diagnostic nightmare!  This phenomenon has been documented in early syphilis as well as in early Borreliosis cases.)

Finally, Dr. Edwards writes that "prolonged treatment with antibiotics is not indicated and can often be dangerous.”  She fails to mention that one clinical trial clearly showed patients improved when they were treated with longer courses of antibiotics.  She doesn't share that there is no study that has ever proved that a few weeks of antibiotics cures Lyme disease.  She doesn't note that many infectious diseases (including Tuberculosis and Lyme's spirochetal cousin Syphilis) often require longer courses of antibiotic treatment nor that acne patients are treated with Doxycycline for months to years, with few problems.  

The article doesn't compare the true risks: the danger of longer antibiotic therapy vs. the danger of allowing a serious infectious disease to destroy a human body, a human life.  Dr. Edwards fails to disclose that scientists and medical providers are at odds about the treatment of Lyme disease and that thousands of Lyme patients (and their physicians) report that they have greatly improved with much longer courses of antibiotics instead of the short courses currently recommended by the IDSA.  (The three "longer treatment" clinical trials, by the way, did not examine treatment that lasted very long.  Some patients report it takes many months to even years before they really get better.  New clinical trials need to examine more lengthy treatment in Lyme disease, especially since it's accepted that other diseases may require such treatment.) 

Again, the science is emerging. Treatment is a very controversial subject. This, at least, should have been highlighted by the writer.


 *****

In the past several decades, many new pathogens have been identified in ticks, animals and humans. Scientifically and medically as a whole, we probably don't know half of what we need to know about ticks and the organisms they carry. But, even though tick-borne disease science is evolving, medical providers must diligently keep up with all of the latest information.  Authoritative doctors risk harming their patients and the public if they are so grossly misinformed.

GALDA implores medical professionals:  Because so many people are exposed to tick bites regularly and we're learning these arachnids can carry some really nasty bugs, we urge you to educate yourself on an ongoing  basis about ticks and the diseases they carry.  It's important to read all of the science, not just that cherry-picked by IDSA and CDC.  (It's surprising to see the amount of contradicting published literature available that is routinely ignored.)  Don't just visit your old "standby" websites, but sites like the International Lyme and Associated Diseases Society, as well (www.ILADS.org).  And investigate for yourself, here's a link to several great Lyme disease medical literature bibliographies to help you get started. 


But please, for the sake of your patients, learn all that you can.  Your patients need and deserve a super-educated YOU.



*****


Proper tick removal:  DO NOT TOUCH TICKS WITH BARE FINGERS.  And, try not to leave the head in.  Both before and after their use, sterilize fine-nosed tweezers to remove an attached tick.  Grasp the tick with the tweezers as close to the skin as possible.  Then, pull straight out.  Avoid touching the tick’s body, especially avoid crushing it during removal.  Never twist, turn, burn or apply substances to the tick - these things may cause the tick to regurgitate its stomach contents (Lyme bacteria, etc.) into your skin.  Watch for any signs and symptoms following any tick bite and seek immediate medical care should symptoms develop. 


For more information, visit Georgia Lyme Disease Association's Prevention web page: 





Wednesday, July 9, 2014

Lyme Disease Tests: How reliable is the C6 ELISA?


What's in your wallet?   


It's a catchy line from Capital One's popular advertising campaign.  But, instead of inquiring about his wallet, you may seriously want to ask your doctor,



"What's in your laboratory's 

Lyme disease test kit?"



                                  - NIH



Recent news articles have described the C6 ELISA as a preferable Lyme disease test.  It's still recommended by some at the IDSA as a possible one-step test to detect Lyme disease in humans. It's suggested by others as a "sensitive" screening tool, to be ordered prior to a western blot. In addition, a C6 SNAP test is used by many veterinarians to test dogs and other animals for Lyme Borreliosis.  But, is the C6 actually reliable? 

After reviewing the published literature, GALDA gives the C6 a big...




  


Why?  Just keep reading...


In 2011, the National Institutes of Health's Dr. Peter Burbelo and his colleagues wrote:

Recently, the C6 SNAP test has been used for the serological diagnosis of equine Lyme disease.  Unfortunately, Chang and colleagues found that the C6 SNAP test detected only 63% of known, experimentally B. burgdorferi-infected horses, suggesting that this test is suboptimal for the diagnosis of equine infection. In light of the poor sensitivity of the currently available C6 SNAP test, a better understanding of humoral responses in B. burgdorferi-infected horses is needed.(1)

A previous study using the SNAP C6 test with experimental animals showed 65% sensitivity in detecting B. burgdorferi-infected horses and ponies and matched quite well with our C6-based VOVO test showing 72% sensitivity. (1)


Another study revealing the insensitivity of the C6 was published in 2012.  Lyme-infected monkeys with confirmed evidence of persistent infection were tested over time using the C6 ELISA.  The test missed the disease in 50% of the animals. (2)   


Worse still, this is nothing new. Dr. Ed Masters explored using the C6 ELISA years ago to test his human Missouri Lyme disease patients.  The C6 only detected 7/91 cases, with an additional 6 that were "probable positives." 


78/91 tested below 1 SD (negative) suggesting the agent or agents of Masters' Disease (Lyme disease transmitted by lone star ticks) may not express C6 epitopes. (3)


Other studies describe the unreliability of the C6 ELISA, as well.



Okay, let's think this through:  


- Positive cases of Lyme disease detected in dogs using the SNAP C6 ELISA are reported on the IDEXX "Dogs and Ticks.com" website.  There are some cases but not a huge percentage reported from the southern USA. 

- Chang's work showed that the C6 missed 37% of the horses infected, Embers' work showed the C6 missed 50% of monkeys with persistent infection.  And this was in trying to detect one Lyme bacterial species, Borrelia burgdorferi sensu stricto (Bbss). But the C6 is still used quite often in vets' offices to test dogs.

- In the southern USA,  there are several other Lyme Borrelia species and strains, not only Bbss, and these may express different determinants that the C6 ELISA doesn't pick up (as suggested by Masters' research).  Some of the other Lyme Borrelia species found here, including Borrelia bissettii, Borrelia andersonii and Borrelia americana, have been identified in symptomatic patients in recent years. 

- The C6 only detected 7 out of 91 (8%) Missouri Lyme disease cases - cases most likely vectored by the lone star tick since "deer ticks" were said to be rare to nonexistent in Missouri at that time.  As Dr. Ed Masters noted in another paper, the whole cell sonicated ELISA detected the greatest number of Lyme cases among his patients, though it was still far from foolproof.



What does it all mean?


So, do the reported cases on the DogsandTicks.com map only represent about 8% of the southern dogs actually infected with various forms of Lyme Borreliosis?   How many dogs in the southern USA - where the aggressive lone star tick is so prevalent - are truly infected with some undetected strain(s) of Lyme Borrelia?

Most importantly, what about people infected with other Lyme Borrelia species and strains that the C6 and other Lyme disease tests are not designed to detect?


Buyer beware: there is still no test that can rule out Lyme disease. While the test might be useful sometimes, negative results obtained by using the C6 ELISA cannot be trusted. This may be particularly true in areas where the lone star tick is prevalent and/or so many other species and strains of Lyme Borrelia are known to exist.

So, really...ask your doctors...What's in your laboratory's Lyme disease test  kit?  Is it a C6 ELISA, a FLA-based ELISA, a whole cell sonicated ELISA?  Do you know what studies show about the sensitivity of each one?  And what do they show about the reliability of western blots and PCR used in testing for Lyme disease?  Because, all of this should matter to doctors who truly care about their patients, especially when so many people may be suffering from an undiagnosed, treatable bacterial infection.



References:

1.  Burbelo, P., et al. 2011. Antibody Profiling of Borrelia burgdorferi Infection in Horses.  Clin Vaccine Immunol. 18(9): 1562–1567.   http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3165210/

2.  Embers, M., et al.  2012.  Persistence of Borrelia burgdorferi in Rhesus Macaques following Antibiotic Treatment of Disseminated Infection.  PLoS ONE 7(1): e29914. 
http://www.plosone.org/article/info%3Adoi%2F10.1371%2Fjournal.pone.0029914

3. Masters, E and Phillip, M.  C6 Lyme Peptide ELISA Serosurvey of Missouri Patients.  Supplement, Lyme Disease Resource Center, Page 23.  https://docs.google.com/viewer?a=v&pid=sites&srcid=ZGVmYXVsdGRvbWFpbnxzb3V0aGVybnRpY2tib3JuZWRpc2Vhc2VkYXRhfGd4OjQ4ZmIzNGNiOWI2NmViOGE

Friday, May 2, 2014

Spreading Awareness in a Big Way


Georgia Lyme Disease Association

 (GALDA) Launches New 2014 

Metro Atlanta Billboard Campaign. 



May 2, 2014, 

Atlanta's metropolitan area is the ninth largest in the country, boasting a population of 5,457,831. GALDA's 2013 metro Atlanta billboard campaign was so successful, we thought we'd do it again, thanks to our partners at CBS Outdoor who truly care about the health of Georgia citizens.






Here's a shot of just one of several Georgia Lyme Disease Association billboards and digital posters that will run from April 28 - June 1 in various locations in and around metro Atlanta.  During Lyme and Tick-Borne Disease Awareness Month, we hope to raise awareness about tick-borne diseases across the southeastern USA.









GALDA's ads will also appear all month on the CBS Outdoor Rail Network - the in-car televisions of the Metro Atlanta Rapid Transit Authority (MARTA) which have the ability to reach a captive audience of 5.8 million riders every month!


Here's a short version of GALDA's new ad that MARTA riders will see:







At GALDA and CBS Outdoor, we mean business when we say that we want all citizens to learn to protect themselves from ticks and the diseases they can carry.  Let us know how many of our ads around metro Atlanta you spot this month, Georgia!

*******

Our sincere gratitude goes to CBS Outdoor for partnering with GALDA again this year to promote awareness about tick-borne diseases and their prevention. Special thanks to our clever, hard-working account representative Richard Wallace and to the CBS Outdoor Creative Team headed up by Southeast Hub Creative Director Eddy Herty. Mwah!


One of GALDA's 2013 Atlanta billboards 






Thursday, May 1, 2014

Georgia Governor Nathan Deal Declares May 2014 “Lyme and Tick-Borne Disease Awareness Month.”

 Again at the request of Georgia Lyme Disease Association




May 1, 2014
copyright Georgia Lyme Disease Association

For the fifth consecutive year at Georgia Lyme Disease Association’s request, our Georgia governor has issued a statewide proclamation deeming May, Lyme and Tick-Borne Disease Awareness Month.  People living in the southeastern United States encounter ticks so frequently, GALDA again thanks Governor Nathan Deal for his concern about protecting the health of our citizens through the promotion of educational and preventative measures.

Working with GALDA, Georgia was the first state in the southeastern USA to issue a statewide awareness proclamation in 2010.  GALDA board members have since consulted with patient advocacy organizations in surrounding states, and other states have now issued Lyme Disease Awareness Month proclamations including Alabama (2013 and 2014), and new for 2014, Kentucky, Tennessee, North Carolina and Florida.  We’re encouraged to see states taking such a proactive stance to try to prevent tick-borne illnesses in our citizens.

Georgia Governor Nathan Deal and Georgia Lyme Disease Association urge citizens to become educated about ticks, the diseases they may carry, and ways to prevent tick bites.  We encourage people to learn how to remove a tick properly, since improper removal and/or touching a tick with bare fingers may actually result in disease transmission in some cases.  The public should become familiar with the signs and symptoms of tick-borne illnesses and seek immediate medical help should symptoms develop.

Ticks in the southeastern USA may transmit one or more of several pathogens including:

Lyme disease-causing bacteria - Borrelia burgdorferi sensu stricto, possibly Borrelia andersonii, Borrelia americana and Borrelia bissettii as newer research suggests.  Other Lyme Borrelia species may also produce disease in humans, more studies are needed. At least six different Lyme Borrelia species have been identified in the southeastern USA, more than in any other region of the country.  Current Lyme disease testing criteria are only geared to detect a single strain of one Lyme Borrelia species, so many cases may be missed by available tests.  Of Note: Restrictive southern reporting practices (quite different than those used to report cases in the Northeastern USA) have prevented the reporting of thousands of southern Lyme disease cases for decades, making it appear as if Lyme disease is not a problem in this region.  Thousands of patients and many doctors can attest that Lyme disease is a significant problem in our area.  
   
Relapsing Fever BorreliaBorrelia turicatae.  In addition, the newly-identified relapsing fever organism Borrelia miyamotoi has been documented in wild turkeys from Tennessee.  Human studies in the SE USA are needed.   No commercial test is available yet for B. miyamotoi.

Babesia microti, Babesia duncani, and other Babesia species – cause of Babesiosis.  Babesia microti is the only one most doctors in the South will test for, however, research suggests other Babesia species- which may require additional testing to detect - are present.

Ehrlichia – including Ehrlichia chafeensis, Ehrlicha ewingii – cause of Ehrlichiosis.  May produce very serious, acute symptoms and even lead to death in just a short period of time.  If suspected, many doctors will just go ahead and prescribe doxycyline because taking a "wait and see" approach can be so dangerous.

Anaplasma phagocytophilum – causes Anaplasmosis, this was previously called human granulocytic ehrlichiosis.  

Coxiella burnettii – causes Q-Fever.  Cases have been reported in Georgia and Tennessee, though tick bites are not believed to be the major source for most cases of this disease.   

Bartonella – causes Bartonellosis; Bartonella henselae is most commonly known though there are many species.  May be transmitted by other vectors, but in recent years, ticks have also been implicated.  Other Bartonella species have also been found infecting humans.  See Dr. Ed Breitschwerdt’s work at North Carolina State University College of Veterinary Medicine.   

Rickettsia – causes what is now termed, Spotted Fever Rickettsiosis, previously called, Rocky Mountain Spotted Fever before other Rickettsia species were known to infect humans.   Rickettsia rickettsii (causes Rocky Mountain Spotted  Fever -RMSF); Rickettsia parkeri and Rickettsia amblyommii may also infect humans and be cross-reactive in testing, causing a positive RMSF test.

Francisella tularensis – causes Tularemia, generally rare.  May be contracted through other vectors and means.  

Tick-borne Viruses?  New Heartland Virus and Phlebovirus have been identified in lone star ticks from other regions in recently.  Lone star ticks, Amblyomma americanum, are the tick species most commonly found biting humans in the southeastern USA as well as in many other states, including Virginia.  More studies need to be performed in this region to determine the prevalence of these and other tick-borne disease-causing organisms in humans.

Tick Paralysis:  Not a disease, but a very serious condition or affliction.
 
See GALDA’s webpage, Other Tick-Borne Diseases for more detailed information. 


REMEMBER:  Preventing tick bites is the key!  Please perform tick checks regularly!  

Friday, April 4, 2014

Antibiotic Treatment of Arthritis:

The Road Back and MIRA Therapy 

© Liz Schmitz, Georgia Lyme Disease Association, 4.4.14 




Thomas McPherson Brown, MD
1906-1989

When Dr. Thomas McPherson Brown appeared on a television interview with Joan Lunden in 1988, she said that his antibiotic arthritis treatment protocol was “turning the medical world upside down.”  Quietly, he replied, “I’m trying to turn it right side up.” 

Dr. Brown was working at the Rockefeller Institute just before World War II when he discovered something interesting in the joint fluid of an arthritic patient – an ”L-form” bacteria-like agent.  (It was later identified as a cell-wall-deficient organism now known as, mycoplasma.)   Thus, Dr. Brown wondered whether an infection might be causing the woman’s arthritis.  He began treating her and other arthritis patients with low-level doses of the antibiotic tetracycline, later turning to doxycycline and minocycline instead.  Remarkably, he reported that while the antibiotic therapy wasn’t a cure, it was an effective treatment for about 90% of the patients he treated, as long as they "stuck with it." Other medical providers who tried Brown's protocol with their arthritic patients reported similar results. 

As head of the arthritis research program at the Veteran’s Administration, medical consultant to the White House and Dean of Medicine at George Washington University Medical School, Dr. Brown was well-respected.  In fact, because his treatment helped so many, he became so popular among patients that they formed a vocal advocacy group of over 10,000 people.  They were known as "Doctor Brown's Army."  Still (or maybe because of this), he and his antibiotic therapy were sharply criticized by many in the medical community.  Finally, following his death, the results of a National Institutes of Health clinical trial supported Brown’s claims - his treatment protocol was indeed effective.  Over half the patients enrolled in the NIH “Minocycline in Rheumatoid Arthritis” (MIRA) study had improvement in joint pain and swelling.  An even greater number showed objective improvement in their blood test results. 

There have now been more than seven major studies published about Brown's antibiotic arthritis therapy.  Described in the book The Road Back: Rheumatoid Arthritis, Its Cause and Its Treatment, Dr. Brown’s protocol has benefited thousands of suffering people worldwide.  It continues to be used successfully today (often with rave reviews) and not only by arthritis patients, but by people with other inflammatory connective tissue diseases such as lupus, fibromyalgia and scleroderma, as well.  

For more information, visit the website:  http://www.Roadback.org  and read the book The Arthritis Breakthrough by Henry Scammell.

GALDA Note: Since Lyme disease can lead to arthritis, many won’t be surprised to learn that Lyme Borreliosis patients can often be found visiting RoadBack’s online forums and chat rooms.  For more information about Lyme disease, visit Georgia Lyme Disease Association www.GeorgiaLymeDisease.org or visit us on Facebook.

Wednesday, June 5, 2013





© Georgia Lyme Disease Association, www.GeorgiaLymeDisease.org


COMMON LONE STAR TICK IMPLICATED IN

LYME DISEASE BACTERIA FOUND IN SOUTHERNERS


Dr. Clark's Research May Help Millions


For the first time ever, University of North Florida's Dr. Kerry Clark and colleagues reported finding two species of Lyme disease bacteria previously unknown to infect humans, Borrelia americana and Borrelia andersonii, in symptomatic patients living in the Southeastern USA. Importantly, the commonly found lone star tick, formerly believed by many to be incapable of transmitting Lyme disease, was implicated in some of these cases.

The research, published in the May issue of The International Journal of Medical Sciences, is extremely significant for several reasons.  First, only one Lyme bacterial species, Borrelia burgdorferi sensu stricto (Bbss), was previously recognized to cause disease in North America.  Current testing methods and interpretation criteria, designed to detect just one species,  may explain many of the complaints involving the unreliability of Lyme disease tests in the USA.

In addition, the belief  that only black-legged "deer" ticks can transmit Lyme disease has been widely publicized for decades.  Lyme disease risk has been calculated largely based upon the prevalence and infection rate of these "deer" ticks,  Ixodes scapularis.  In fact, Yale University recently released a new Lyme Disease Risk Map funded by a $2.9 million CDC grant which was highly contested by many. (They only tested a total of nine black-legged ticks from a few southern states.)   Yale's map, based solely on "deer" ticks,  shows little risk to people living outside the Northeastern USA.  Clark's findings, together with past studies implicating lone star ticks associated with Lyme disease (Masters, Rawlings, Felz, Feir, etc.), strongly suggest otherwise. 

Dr. Clark and his team identified lone star ticks, Amblyomma americanum,  removed from humans who tested positive for Lyme bacteria, including the species of Borrelia burgdorferi, Bbss, already known to cause the disease in North AmericaSome of the ticks removed from the patients tested positive, too. 

Lone star ticks are the most commonly found species biting humans in the Southeastern United States.  These aggressive ticks are found almost halfway across the nation - from the deep South and as far north as Canada. This groundbreaking research may clarify why so many humans living outside of the Northeastern USA claim they have contracted Lyme disease** regardless of the absence or low prevalence rate of  infected black-legged "deer" ticks. 

The new findings significantly expand the geographic area where Lyme disease should be considered by medical providers and citizens alike.  As Georgia Lyme Disease Association president Liz Schmitz remarked, "If only one percent of these ticks are able to transmit Lyme disease, it poses a tremendous threat to public health because lone star ticks are known to bite humans so frequently."
 
Dr. Clark's work may help millions of chronically ill people living in areas where Lyme disease wasn't previously recognized.  Called The New Great Imitator, Lyme disease is often mistaken for illnesses such as Fibromyalgia, Chronic Fatigue Syndrome, Lupus, Multiple Sclerosis, Rheumatoid arthritis, Lou Gehrig's disease, Parkinson's, ADHD, and even Alzheimer's.

Georgia Lyme Disease Association is proud to have provided both technical assistance and funding in support Dr. Clark's important research.

 ** For decades, public health officials and Lyme disease groups and organizations have heard from thousands of patients living outside known "endemic" areas who claim they and/or their family members contracted Lyme disease with no travel history.  With 715 cases on record, Georgia was the 4th highest state in the nation in CDC-reported Lyme cases in 1989 but reported only 10 by 2010.  Most cases of southern Lyme disease now  go unreported due to the different regional surveillance guidelines used.  Southern cases are often dismissed as "false positives."


New! GALDA campaign to fund the work of Dr. Kerry Clark & colleagues:  Please help us support the ongoing research efforts of  Dr. Kerry Clark by making a tax-deductible donation to GALDA's new fundraising campaign.  GALDA is an all-volunteer, non-profit 501(3)c organization.  All proceeds of this campaign will go directly to support the important work of Dr. Clark and his colleagues.

Five...ten... twenty dollars...every bit helps!  Let's speed up our understanding of Lyme disease by working together to unlock Borrelia burgdorferi's secrets!  Patients and citizens everywhere will benefit.   Thank you for your generosity.  Click here to support this great work.




www.GeorgiaLymeDisease.org
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Thursday, August 30, 2012

Undisclosed Flaws in CDC National Lyme Disease Case Map Limit Chances of Early Diagnosis and Treatment for Southern Patients


Click here to see larger image.

 

by Georgia Lyme Disease Association

Today during Senator Blumenthal's hearing on Lyme Disease, Southern Lyme disease patients and their family members heard something that sounded to them like nails on a chalkboard.  One of the speakers mentioned that there aren't many Lyme disease cases in the Southern USA.  Well, we will excuse him since he doesn't live here and isn't actually witnessing what we're seeing.  But since we've heard this myth time after time, we thought we'd set the record straight. 

For many years, patient advocates have heard from thousands of people who report that they have contracted Lyme disease in the Southern USA. Many of these patients have no travel history, produce positive laboratory results, and have a history of tick bite, rash and compatible Lyme disease symptoms. 

This is not a new occurrence, as if Lyme disease is slowly creeping down here, but it's something that has been happening for decades.  Many of the cases date back to the late 1980's and early 1990's.

It seems almost everyone in the South knows somebody who has contracted Lyme disease and many people know of several cases.  Patients include doctors, nurses, attorneys, political representatives, and other credible community members.

So...why doesn't the rest of the nation know this? 


Because looking at the CDC's National Lyme Disease Case Map, one would never suspect that there are so many Lyme disease cases occurring in the South. 



What's wrong with this picture?


We couldn't understand why we hear from so many Southerners with Lyme disease when so few Southern cases appear on the CDC's National Lyme Disease Case Map.  It didn't make sense!  So we did a little checking and, guess what?  In the states we checked, COMPLETELY different reporting practices were used, much different than those employed in the Northeastern United States!  And, apparently federal officials are fully aware of this, but somehow, they fail to note these incredibly significant discrepancies on the National Case Map.


Comparing Apples to Oranges


The CDC's National Case Definition for Lyme Disease (Reporting Guidelines) from 1995 - 2008 instructed states to count Lyme disease cases by county.  The CDC guidelines said that once a county documented two or more lab-confirmed Lyme disease cases or found an infected known tick vector, that county could be declared endemic for Lyme disease.  Once endemic, erythema migrans (EM)  rashes ALONE were reportable as cases, no tick bite or positive test required.  This is because erythema migrans (EM) is diagnostic for Lyme disease and if Lyme was documented in that county in two people confirmed by tests, there were no qualms about counting subsequent rashes as Lyme disease cases.  Everyone knows at the time of the rash, most patients won't test positive yet, so reporting only those with positive test results wouldn't really work to calculate the magnitude of the Lyme disease epidemic.  So rashes alone were reportable....in the Northeastern USA.  Numbers in Northeastern states skyrocketed. 



An Institute of Medicine Report estimates that

SEVENTY PERCENT

of all reported Lyme disease cases are  

erythema migrans rashes alone.




But there's one big problem...

In the Southern states highlighted in green in the map above, rashes alone weren't reportable.  (And we strongly suspect the same in other states, as well.)  So, how can we possibly compare statistics? 

We found hundreds of counties across the Southeastern United States that have had two or more cases documented in them over the years, and no proof that they are all due to travel.  (In fact, the Centers for Disease Control (CDC)  reported native Lyme disease cases in 27 Georgia counties and others in Florida and Alabama in the late 1980's Click here.)  Infected tick vectors have been found in southern counties, too.  Yet these southern counties were not declared endemic, so rashes alone could not be reported.

We often hear about southern Lyme disease cases with tick bite, rash, symptoms and positive test results that are dismissed as "false positives" instead of reported!  Federal public health officials encourage this and discourage testing outside current "endemic" areas despite Lyme bacteria being documented in the South for over 25 years.

Without investigation, cases in the South are routinely dismissed as the mysterious, unreportable "STARI", Southern Tick Associated Rash Illness, which  nobody can seem to put their finger on despite the hundreds of  Lyme bacteria strains discovered in the South. (Once a suspect, a Relapsing Fever spirochete called Borrelia lonestari has now been discarded by officials as the cause of so-called "STARI.") 

In 2008 and again in 2011, the CDC's National Lyme Disease Case Definition changed.  Now, areas that are not already declared "endemic" officially have a completely different set of reporting rules, not the same at all as what are used in the Northeastern USA. (It doesn't really matter since the old national guidelines were only adhered to in certain states, anyway.)   Now, the reporting guidelines are far more restrictive, requiring positive lab results outside "endemic" areas - yet, remember, it's estimated that seventy percent of reported cases in the Northeast never had to have positive lab results, only rashes! Rashes alone are still not reportable in the South, but are in "endemic" areas of the North.

To add insult to injury, officials refer to the Southern USA as "nonendemic" and put forth new, more restrictive reporting rules for most states outside the NE USA to follow, even though hundreds of Southern counties already qualified long ago to be endemic by their own previous definition they would have been endemic, had we been playing by the same rules!  

So how could anyone hold up a National Lyme Disease Case Map as if it is an accurate portrayal of Lyme disease infection rates in this country?  We can't compare what's occurring from state to state or region to region.  Federal officials are fully aware of these different reporting practices.  These disparities must be stressed and noted so that those in the Southern USA and any other area of the country where this may be happening are not lulled into complacency.

The Truth


Because Southern Lyme disease cases have been dismissed as "false positives" or "STARI"  instead of reported,  the truth is, we have no idea how prevalent Lyme disease really is in the Southern United States.  But we hear from Southerners who report that they have contracted Lyme disease two and even three times and families who tell us they have multiple members infectedThis doesn't occur in a region when a disease is "rare."

The CDC's National Lyme Disease Case Map misleads the public and medical providers.  These important differences are not disclosed, causing citizens and medical professionals to assume that Lyme disease is rare in their areas by comparing their state or regional case numbers to those in the Northeastern USA where rashes alone are reportable.  When doctors think a disease is "rare,"  it's not on their diagnostic radar screen.  This adds to the lack of recognition, diagnosis and early treatment of Lyme disease, potentially causing thousands if not millions of patients to needlessly suffer permanent damage and/or persistent infection.

Remember these differences when you look at the CDC's National Lyme Disease Case Map.  Remember that Lyme Borreliosis is being found worldwide. Understand that more Lyme Borrelia species (7) and strains (hundreds) have been documented in the Southeastern USA than in any other region of the country.  And if you develop a rash or symptoms following a tick bite, seek immediate, adequate medical treatment no matter where you live.  (By the way, we do not support the use of the 1 or 2 doses of doxycycline; it left the majority of mice infected in a study).


Case numbers cannot be compared when what is reportable as a case in the Northeastern USA is routinely dismissed in the Southern USA.  Don't let the maps fool you.









What You Need To Know About Lyme Disease in the Southern USA: 


Borrelia burgdorferi sensu stricto?              


Check.  50+ Bbss strains documented by Georgia Southern University's Dr. Jim Oliver.

In fact, Lyme disease bacteria, Borrelia burgdorferi (Bb) have been documented in THOUSANDS of tick and animal specimens and in many humans from across the South in published studies spanning more than two decades.  More importantly, more Lyme disease bacteria species and strains have been documented in the Southeastern United States than in any other region of the country (see our website NEWS page for details).  The fact that there are more numerous and varied Bb strains in the South, suggests to scientists that Lyme disease bacteria were actually in the Southern United States first, giving the bacteria time to diversify into so many different species and strains, before moving North.


Competent Animal Reservoir in the South?    


Check.  The cotton mouse, cotton rat and wood rat are all competent reservoirs for Borrelia burgdorferi.  The white-footed mouse is also found in some areas.  Gray squirrels, chipmunks and shrews are now being investigated as reservoirs, as well.  Even birds and some lizards may be reservoirs.


Infected Ixodes scapularis, black-legged "deer" ticks?  


Check.  And evidence suggests these ticks moved from South to North, not that they are now "expanding their range" down to the South.



Do black-legged "deer" ticks bite humans in the South?


Check.  In fall and winter months, adult Ixodes scapularis "deer" ticks feed on humans on warmer days so humans are exposed year 'round due to our warm climate. 



And lest you believe that old myth, "Only nymphal ticks are attached long enough to transmit Lyme disease because bigger ticks are more easily spotted and removed quickly" ...here's an important study published in 1996:  


Duration of tick bites in a Lyme disease-endemic area, Am. J. Epidemiol. 143: 187-192.

The authors (Falco, Fish, and Piesman) reported that 26.8% of I. scapularis nymphs removed from people were attached >48 hours, while 23.3% of adults were attached >48 hours. 


There's not a very significant difference between the number of nymphs and adults attached for over 48 hours, is there?  Adult ticks can easily be missed on a person's back or scalp. 


Do People in the Southern USA Test Positive for Lyme Disease?


Check.  Some Southerners do indeed test fully "CDC-reportable" positive for Lyme disease using the very strict 2-tier test methodology.  This indicates that these patients are infected with a Borrelia burgdoreri sensu stricto B31 type strain or one closely-related, known to cause Lyme disease in the Northeastern US.  These and many other strains of the species Bb sensu stricto have been documented in the Southern USA.  Additionally, other diverse Lyme Borrelia species and strains are found in the South and some are newly discovered. 

As in the Northern USA, western blot lab results for some Southern patients don't meet CDC guidelines, however, they show various positive bands, some highly specific for Borrelia burgdorferi.  That all Southern patients' labs do not meet strict CDC guidelines meant for reporting purposes isn't surprising in the least.  A recent Johns Hopkins study of Lyme patients proved that current tests were unreliable in detecting a huge percentage of patients tested from Maryland and Pennsylvania.  Why would Southern patients be expected to always have "CDC-reportable" lab results when Northern patients do not?  

A study of southern erythema migrans (EM) rash patients published years ago concluded that Southern Bb strains are so genetically different, the South needs its own Lyme disease testing system!  We still await these tests.  Many Southern Lyme disease cases are likely missed using the current unreliable tests which are designed to detect a few strains of a single Bb species.



Until next time, please remember to do a tick check daily...even in the winter months especially in warmer climates.

-GALDA


Don't miss our upcoming series: 





   "STARI":  Is It Really Just Lyme Disease? An Evidence-Based Evaluation.




For more information, visit our website at www.GeorgiaLymeDisease.org

 

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