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?
“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?
“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?
“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?
“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.