Response to “fake news” article about Lyme and co-infections
Recently, the Arkansas Democrat-Gazette wrote a news story about tick-borne diseases in their state, which was distributed through a service called Pressreader. Dr. Richard Horowitz, a leading expert in treating tick-borne diseases, takes issue with many of the statements made in that article.
Why should you be concerned with “fake news” about Lyme and associated tick-borne disorders?
I do not usually report articles on the internet that have inaccurate information (there are many). However, a report from Pressreader about Lyme and co-infections in Arkansas deserves a detailed response.
They recently found two cases of Lyme disease in Arkansas that met Department of Health (DOH) surveillance criteria, and report that they needed the patient to have a classical bull’s-eye rash, followed by positive two-tiered testing to make the diagnosis.
The article also states that ticks don’t transmit borrelia to their eggs; that birds don’t transmit multiple infections to ticks; that Rocky Mountain Spotted Fever (RMSF) causes a rash all over the body, and finally, that it’s not necessary to treat Southern Tick-Associated Rash Illness (STARI), because it goes away on its own.
Unfortunately, the situation is a lot more complex, and there is a lot of misinformation in this article.
First of all, Lyme is a clinical diagnosis, and I suspect there is a lot more Lyme in Arkansas than reported. Only 25% (or less) of Lyme patients get erythema migrans (EM) rashes, and in one prior National Institutes of Health double-blind study (Dr. Brian Fallon), only 1% of patients with neurological Lyme had positive two-tiered testing. But they were still ill and many responded to treatment with antibiotics.
If the DOH was to use my recently validated Health Measurement Questionaire (Horowitz MSIDS questionnaire) in patients with C.F.S./M.E./S.E.I.D. (often called chronic fatigue syndrome), fibromyalgia, autoimmune illness (rheumatoid arthritis, multiple sclerosis) or in those with resistant neurological disease (early dementia, resistant psychiatric cases with a multisystemic disorder), they probably would find many more cases in their state.
Secondly, certain species of borrelia, like Borrelia miyamotoi, can be transmitted transovarially (from the mother tick to her eggs), and in New York State, 10-20% of the ticks contain B. miyamotoi, causing a Lyme-like illness. Symptoms can include an EM rash, Bell’s palsy, and meningitis. These patients are usually negative on two-tiered testing, so don’t assume because there is no rash or positive ELISA or Western blot that you don’t have Lyme or a Lyme-like relapsing fever bacteria!
Third inaccuracy: birds do transmit multiple species of borrelia and other co-infections (including Bartonella) to ticks, explaining in part the spread of these illnesses worldwide. There are many scientific articles proving this.
Fourth, RMSF can be devoid of a rash in 40% of patients (and 60% of the time, it is on the hands and feet), and can be associated with low white cell counts (leucopenia), low platelet counts (thrombocytopenia), and elevated liver functions (transaminitis) which helps a clinician to make the diagnosis.
Finally, STARI has been determined to be due to a borrelia sensu lato species (Dr Kerry Clark discovered that years ago) and there are individuals who have severe manifestations of STARI, including death from Lyme carditis.
One young man in New York, Joseph Elone, died years ago from Lyme carditis, and he had a negative ELISA test. So, you DO treat STARI, as you would treat Lyme, and do not assume it is necessarily a more benign form of borreliosis.
Take home message: learn the truth about Lyme and associated co-infections and read articles critically. My new book “How Can I Get Better?” discusses some of most important scientific updates on Lyme and the 16-point MSIDS map that I have found to be helpful in improving patient’s health.
Richard I. Horowitz, MD, is a Board Certified Internist and Director of the Hudson Valley Healing Arts Center, in Hyde Park, New York. His website is http://www.cangetbetter.com/
I find it perplexing that board certified physicians (primarily cardiologists) are quick to dismiss a diagnosis of Lyme carditis. This is after a patient presents all relevant information including case background credible enough to prove carditis is the culprit.
When a patient tests positive for Lyme and all co infections, has endured sx for nearly 20 years and now experiences significant heart complications only to have a cardiologist claim that a cardiologic issue is not the problem, then where does a patient turn?
Especially when the cardiologist infers in writing that there maybe an “underlying cause driving the patient’s long standing symptoms”.
Very unfortunate for physicians to be so dismissive out of fear they may experience peer backlash if they admit what they know to be the actual cause.
The Washington Post has a regular health feature about a patient’s mystery illness and how the person was finally correctly diagnosed and treated. Almost without exception, the patient’s complaints are met with skepticism by at least one doctor, but usually several, and suggest the patient is pretending or needs psychological intervention. To date, there have been dozens of these stories, which means dozens of doctors who don’t take their patient’s problems, which are sometimes life threatening, very seriously. Those of us with Lyme could write a book about doctors like this, who shake their heads and roll their eyes at the mere mention of Lyme disease. Sadly, it happens to so many people with other illnesses, too.
I concur with you on all fronts. Unfortunately, the only way these dismissive physicians will ever truly comprehend or accept is if they themselves or their loved ones are afflicted with this disease. That said, even then…..They often seek treatment abroad to remain anonymous and further protect their identity. Sad that we reside in a nation that promotes Freedom where in truth freedom is not so free.
I have been unable to fill out the current Lyme Disease Survey because my only definitive vector-borne disease diagnosis has been Spotted Fever Group Rickettsia, aka “Rocky Mountain Spotted Fever”. I have had positive initial Lyme Disease testing in the past, but most likely contracted RMSF while taking Interferon for hepatitis C (HCV) and working in brush over my head as a Land Surveying Technician in 1998-99.
After I stopped taking interferon for HCV in 12-2006, my severe RMSF symptoms, low platelets and low white cell count began. Although RMSF is a “reportable disease” under federal law and despite the fact that IgG & IgM antibodies were detected in a June 2010 “pared sera sample” by the California Department of Public Health Viral & Rickettsial Disease Laboratory in Richmond, CA and then that pared sera sample was sent to the CDC Rickettsial Zoonoses Branch in Atlanta, GA, THERE EXISTS NO PUBLIC RECORD that I had been diagnosed with and treated for rickettsiae Rickettsia and rickettsiae Akari.
My telecoms with California Public Health Epidemiologists indicate that the State of California is not interested in, nor do they collect data regarding the treatment outcomes of patient’s diagnosed and treated for Spotted Fever Group Rickettsia.
Walt Taylor-Lompoc, CA
Walt, if you have ever been diagnosed with Lyme disease by any health care professional, you are eligible to enroll in the MyLymeData project. There’s an opportunity to talk about co-infections, such as RMSF. More info at mylymedata.org .
Thank you Dr. Horowitz for setting the RECORD STRAIGHT and to LymeDisease.org for posting this – my son will be tethered for 20 hours to an IV in the next two days for the 10 years of misdiagnoses and complete REFUSAL of believing it was Lyme even when his ELISA was totally positive – 21 NYC doctors! INCREDIBLE! P is 13 years old and fighting for his life right now. I am one angry mother right now.
Ditto your last statement Carla. My child also tested positive and after numerous Doctors…. not one will treat the patient though the evidence is clear, convincing and irrefutable. Shame on these individuals aware that children are suffering and stand idle. Only when it’s too late, and patients are suffering so badly they are unable to function do these physicians decide to treat.