Lyme Project News » Lyme Prevention

Demonstrates Need for More Dialogue on Chronic Lyme Disease

Dr. Dan Cameron — Wed, 28 Dec 2011 03:07:29 +0000

Bethesda, MD – Members of the International Lyme and Associated Diseases Society (ILADS) highlight a newly published article entitled Perspectives on Chronic Lyme Disease, as yet another example of the need for more dialogue between physicians, researchers and other health professionals regarding the existence and diagnosis of chronic Lyme disease. The American Journal of Medicine article ignores ILADS’s concerns regarding the serious health problems faced by chronic Lyme disease patients.

The opinion piece, authored by Philip J. Baker, cites research studies considered inconclusive by a number of health care professionals. The findings are based on a small number of subjects relative to the growing number of Lyme disease cases reported annually. Baker’s conclusions are based on trials of fewer than 225 patients. Yet the CDC reported 20,000 new cases of Lyme disease in 2007; the actual number of people diagnosed with Lyme disease is estimated at 10 times this number.

ILADS has consistently challenged the peer review literature that fails to consider the severity of chronic Lyme disease. The Lyme disease patients enrolled in the two NIH sponsored trials mentioned in the article were ill an average of 4.7 years with a quality of life worse than patients with recent heart attacks and diabetes.

ILADS stresses the need for more comprehensive trials to examine the numerous innovative antibiotic options that have been used successfully in actual practice.

ILADS believes the medical community must come together to address the needs of patients who are suffering from the debilitating effects of chronic Lyme disease. Only by airing different points of view will the medical and scientific community reach a better understanding of controversial topics such as chronic Lyme disease.

“What we have here is a failure to communicate,” noted Cameron. “We must work together to find answers for Lyme patients who remain severely ill.”

For more information contact Pam Kahl. pam.kahl@verbal800.com 503.284.1534

http://www.ilads.org/files/2008/press_AJM_statement.pdf

Have You Been Tested for Lyme disease co-infections?

Dr. Dan Cameron — Wed, 21 Dec 2011 20:21:27 +0000

There is a treatment controversy between International Lyme and Associated Diseases Society (ILADS) and International Diseases Society of America (IDSA), pitting doctors against doctors, scientists against scientists, and the ones who suffer – the Lyme disease victims.

Lyme disease can become almost a way of life. Many Lyme disease victims have gone from physician to physician with a list of symptoms that include, but not limited to, migrating pain, frequent headaches, swollen joints, fevers, memory loss, concentration difficulties, and mood swings. (see Denise Lang’s symptom list at http://www.lymeout.org/symptoms.html) While this wastes precious time in receiving treatment, it allows the disease to become chronic. This becomes the first hurdle – IDSA doesn’t acknowledge “chronic Lyme.” Yet, physicians are seeing it in their practices.

Testing is another issue – the Center for Disease Control (CDC) states Lyme disease is clinically diagnosed, but the NIAID recently stated that the testing is insensitive. Yet, to “confirm” Lyme disease, the tests are required. If the tests are insensitive, producing false negative/positive results, why are they necessary? And since the testing is inaccurate, this surely must mean the statistics are inaccurate.

If you get over the first two hurdles, then comes the insurance dance. It begins with the first rejection after the 28-days treatment “guidelines.” Seems some insurance companies would like to dictate your treatment plan, based on those that do not see Lyme disease has the potential to become chronic. This is often against your physician’s call – with little regard that your physician has spent many years going to medical school, interning, and specializing, in some cases, and seeing Lyme disease patients on a regular basis. These physicians are in the trenches with patients – not in some laboratory with rats or hand-selected test subjects.

As if this is all not enough, we rarely hear about another Lyme-related problem – co-infections. Could this be something that has been seriously overlooked?

I recently had the pleasure of speaking with Dr. Daniel Cameron who has been treating Lyme disease patients for over 17 years. He is a member of the ILADS and IDSA, and an attending physician at Northern Westchester Hospital, Mount Kisco, New York. We discussed Lyme disease ( See SueVogan.com for the archive show that aired on In Short Order radio show). The show was very informative, but we did not cover co-infections. It is an important part of Lyme disease as co-infections may be the answer to why some Lyme disease victims are more ill than others.

Sue Vogan’s interview with Dr. Daniel Cameron

Sue: What co-infections are associated with Lyme disease?

Dr. Cameron:
“We know that the same ticks that carry Lyme disease also carry the organisms that cause Ehrlichia, Babesia, and Bartonella. Some ticks contain both Lyme disease and a co-infection. Any individual infected with Lyme disease may also be infected with a co-infection. Alternately, anyone with evidence of a co-infection may be infected with Lyme disease. I have seen cases where the physician diagnosed and treated Ehrlichia without informing the patient that they might also have Lyme disease. Half of the patients with Ehrlichia could suffer from Lyme disease in some areas. The individual is never offered the longer course of treatment that would be effective for Lyme disease,”

Sue: How is each co-infection detected?

Dr. Cameron:
“Headaches, high fevers, a low white blood count, low platelet count, and abnormal liver tests can indicate acute Ehrlichia. A high fever, headache, fatigue, and headache and parasites on a blood smear can indicate Babesia,” Cameron explains. “Often co-infections are not detected early. Antibody tests might be useful later.

"The CDC lists three different types of Ehrlichia:

“Human ehrlichiosis due to Ehrlichia chaffeensis was first described in 1987. The disease occurs primarily in the southeastern and south central regions of the country and is primarily transmitted by the lone star tick, Amblyomma americanum.

"Human granulocytic ehrlichiosis (HGE) represents the second recognized ehrlichial infection of humans in the United States, and was first described in 1994. The name for the species that causes HGE has not been formally proposed, but this species is closely related or identical to the veterinary pathogens Ehrlichia equi and Ehrlichia phagocytophila. HGE is transmitted by the blacklegged tick (Ixodes scapularis) and the western blacklegged tick (Ixodes pacificus) in the United States.

"Ehrlichia ewingii is the most recently recognized human pathogen. Disease caused by E. ewingii has been limited to a few patients in Missouri, Oklahoma, and Tennessee, most of whom have had underlying immunosuppression. The full extent of the geographic range of this species, its vectors, and its role in human disease is currently under investigation.”

"The CDC describes Babesia as: “…tick-borne disease caused by infection with protozoa of the genus Babesia. Human infection causes malaria-like illness characterized by fever, chills, sweats, fatigue, nausea, and vomiting.”

Sue: What is the treatment for each co-infection?

Dr. Cameron:
“Doxycycline is effective for Ehrlichia. Babesia is treated with a combination of Zithromax with either Mepron, Flagyl, or Tindamax. Bartonella is treated with antibiotics known to treat cat-scratch fever including Amoxillin, Zithromax, Biaxin, Levoquin.

"EMedicine describes Bartonella: “Bartonellosis comprises infections caused by newly emerging pathogens. In 1909, A. L. Barton described organisms that adhered to red blood cells (RBCs). The name Bartonia, later Bartonella bacilliformis, was used for the only member of the group identified before 1993. Rochalimaea (named for Rocha-Lima), a similar group, were recently combined with Bartonella. Although these organisms were originally thought to be rickettsiae, Bartonella bacteria can be grown on artificial media, unlike rickettsiae.” (Rickettsiae is a bacteria that causes Rocky Mountain spotted fever)

Sue: Anything else you would like to offer regarding co-infections?

Dr. Cameron:
“Antibody tests for co-infections need to be studied further. Physicians will need to use clinical judgment when treating for a co-infection. Co-infection needs to be considered in individuals with Lyme disease who are sicker or not responding to antibiotics,” Dr. Cameron suggests.

"If we aren’t getting better with treatment, perhaps a co-infection exists. It could explain the persisting symptoms and a reason it may be “chronic.” It’s one avenue that little has been written about and even less been tested for. Dr. Murrakami suggests that researchers, scientists, and physicians get together on this #1 disease in order to find the best treatment. In other words, it’s time to put the big ruler away that measures for the biggest stick and consider the victims of this disease.

Sue Vogan is a published author, journalist, and the host of In Short Order every Thursday night, 9PM EST at www.highway2health.net. Visit her website at SueVogan.com to read about her books and radio show.

http://lymeblog.com/modules.php?name=News&file=article&sid=1170

TOP TEN TIPS TO PREVENT CHRONIC LYME DISEASE

Dr. Dan Cameron — Tue, 20 Dec 2011 22:42:02 +0000

The fact is Lyme is a complex disease that can be highly difficult to diagnose. Reliable diagnostic tests are not yet available which leaves many—patients and physicians alike—relying on the so called “telltale signs of Lyme disease: discovery of a tick on the skin, a bull’s eye rash, and possibly joint pain. However, ILADS research indicates t hat only 50%”60% of patients recall a tick bite; the rash is reported in only 35% to 60% of patients; and joint swelling typically occurs in only 20% to 30% of patients. Given the prevalent use of over-the-counter anti-inflammatory medications such as Ibuprofen, joint inflammation is often masked.

Based on these statistics, a significant number of people who contract Lyme disease are misdiagnosed during the early stages, leading to a chronic form of the disease which can prove even more difficult to diagnose and treat. Lyme disease is often referred to as the “great imitator” because it mimics other conditions, often causing patients to suffer a complicated maze of doctors in search of appropriate treatment. ILADS is committed to the prevention of chronic Lyme disease. The following tips are designed to offer guidance and minimize the risk of contracting chronic Lyme disease.

1. Know that Lyme disease is a nationwide problem
Contrary to popular belief, Lyme disease is not just an “East Coast” problem. In fact, in the last ten years, ticks known to carry Lyme disease have been identified in all 50 states and worldwide. Although the blacklegged tick is considered the traditional source of Lyme disease, new tick species such as the Lonestar tick and a pacific coast tick, have been found to carry Borrelia burgdorferi, the corkscrew shaped bacterium that causes Lyme disease. Avoiding a tick bite remains the first step in preventing chronic Lyme disease. One needn’t have been “hiking in the woods” in order to be bitten by a tick. There can be ticks wherever there is grass or vegetation, and tick bites can happen any time of year. Spraying one’s clothes with DEET containing insecticide, wearing long sleeves and long pants, and “tucking pants into socks”, continue to be the best ways to avoid ticks attaching to the skin. But don’t forget the post” walk body check.

2. Check your tick facts
Ticks can vary in size from a poppy seed size nymphal tick to a sesame seed size adult tick. The ticks can carry other infectious agents besides the spirochete that causes Lyme disease, including Ehrlichia, Anaplamosis, Babesia, and Bartonella. Lyme disease can sometimes be hard to cure if these other infections are not treated at the same time.

3. Show your doctor every rashThe bull’seye rash is the most famous, but there are many other types of rashes associated with Lyme disease. In fact, Lyme disease rashes can be mistaken for spider bites or skin infections. Take photos and make sure a medical professional sees the rash before it fades.

4. Don’t assume that you can’t have Lyme disease if you don’t have a rash
Lyme disease is difficult to diagnose without a rash, Bell’s palsy, arthritis, or meningitis, but you can still have Lyme and not have any of those signs or symptoms. Many people react differently to the infection and experience fatigue, headaches, irritability, anxiety, crying, sleep disturbance, poor memory and concentration, chest pain, palpitations, lightheadedness, joint pain, numbness and tingling.

5. Do not rely on test results
Currently there is no reliable test to determine if someone has contracted Lyme disease or is cured of it. False positives and false negatives often occur, though false negatives are far more common. In fact, some studies indicate up to 50% of the patients tested for Lyme disease receive false negative results. As a result, the CDC relies on physicians to make a clinical diagnosis based on a patient’s symptoms, health history, and exposure risks. Doctors who are experienced in recognizing Lyme disease will treat when symptoms typical of the illness are present, even without a positive test, in an effort to prevent the development of chronic Lyme disease.

6. Be aware of similar conditions
Chronic Lyme disease is called the “great imitator” because it is often misdiagnosed as another condition such as Multiple Sclerosis, Fibromyalgia, chronic fatigue, or anxiety. Misdiagnosis is a common experience for patients with chronic Lyme disease. Treatments that work for these other illnesses are not appropriate for treating Lyme disease. Currently, the only effective treatment for Lyme disease is antibiotics. Ask your doctor to carefully evaluate you for Lyme disease even if your tests are negative.

7. “Wait and See” approach to treatment may be risky
Up to fifty percent of ticks in Lyme endemic areas are infected with Lyme or other tickborne diseases. With odds like that, if you have proof or a high suspicion that you’ve been bitten by a tick, taking a “wait and see” approach to deciding whether to treat the disease has risks. The onset of Lyme disease symptoms can be easily overlooked or mistaken for other illnesses. Once symptoms are more evident the disease may have already entered the central nervous system, and could be hard to cure. This is one case in which an ounce of prevention really is worth a pound of cure.

8. Don’t be afraid to get a second opinionRecognize that opinions on how to diagnose and treat Lyme disease vary widely among physicians. It is worth getting a second or even a third opinion, especially if you are symptomatic and your doctor advises not to treat, or symptoms recur or persist after treatment. Keep in mind that your physician may focus too narrowly on diagnosing and treating a single symptom. For example, a physician may diagnose a pain in your knee as “arthritis”, and not see this as just one part of a larger set of symptoms that adds up to a diagnosis of Lyme disease, which requires different treatment.

9. Know your treatment optionsWork with your doctor to identify the appropriate treatment option if your symptoms persist. There is more than one type of antibiotic available. Longer treatment is also an option. You should also work with your doctor to make sure you don’t have another condition.

10. Expect success You should expect to get better.
You should not accept “watchful waiting” – the practice of stopping antibiotic treatment before you are well and then waiting for symptoms to clear on their own. Some doctors advocate stopping Lyme treatment while the patient is still symptomatic and then hoping that he or she will eventually recover without further treatment. Government trials have identified a number of individuals whose symptoms did not clear when treatment was cut off prematurely. There are doctors who feel your symptoms will clear with further antibiotic treatment.

Support by Turn the Corner FoundationTurn the Corner Foundation (TTCF) is dedicated to the support of research, education, awareness and innovative treatments for Lyme disease and other tick”borne diseases. Since its inception, TTCF has organized and supported countless programs that address Lyme disease education, diagnosis and treatment.

ILADS Launches Chronic Lyme Disease Prevention Campaign

Dr. Dan Cameron — Tue, 20 Dec 2011 20:38:09 +0000

The campaign launch coincides with Lyme Awareness Month and the community premiere of Under Our Skin, the recently released film by Open Eye Pictures, focused on the controversy surrounding diagnosis and treatment for Lyme disease. ILADS has developed Top Ten Tips for Preventing Chronic Lyme Disease for use as reference for people who suspect they may have developed chronic Lyme disease or are at risk of contracting due to early misdiagnosis or under-treatment. The prevention guide can be found at http://www.ilads.org/cldprevention/.

“ILADS recommends all families at risk of exposure to Lyme disease read this guide,” said Dr. Daniel Cameron, ILADS Board President and internal medicine physician. “The best way to prevent chronic Lyme disease is to get the right treatment early on. We hope this guide will help ensure more people receive appropriate treatment for early-stage Lyme disease thus mitigating their chances of developing chronic Lyme disease.”

The guide intends to help patients and their families engage in useful discussions with their family physicians with the goal of early, accurate diagnosis of Lyme disease—the first step in preventing the more debilitating form of the disease.

Chronic Lyme disease is often the result of misdiagnosis or under treatment soon after a tick bite. Standard treatment guidelines reflect a narrow view of Lyme disease, making it difficult for physicians not well versed on the complexities of the disease to recognize symptoms and provide adequate treatment. There are no accurate diagnostic medical tests for Lyme disease.

A recent announcement by the Connecticut Attorney General, Richard Blumenthal, calls for a reassessment of the guidelines, after finding flaws in the original guideline development process. This review provides the opportunity for development of a new set of guidelines that provide more thorough guidance for physicians treating Lyme disease.

Media contact: Pam Kahl. pam.kahl@verbal800.com 503.284.1534

http://www.ilads.org/files/2008/Prevent_CLD_news_release.pdf