Lyme & Reason

Nov. 18, 2016

Excellent 20 minute video on Lyme Disease.  A bit frustrated with Dr. Fallon still propagating the “bullseye rash” myth It was also stated that if “If Lyme Disease goes untreated for two weeks there can be serious side-effects.”  Again, there is no science or magic about the length of two weeks.  

WE NEED TO DISPEL LYME/MSIDS MYTHS! Hardly anyone I work with fits into the CDC’s box of symptomology.  Seriously, this needs to stop or no one is ever going to get diagnosed properly.

The following is on Fallon’s own website:

Sometimes, other rashes occur in other parts of the body far away from the initial tick bite. This is because the spirochete gets transmitted quite rapidly in the bloodstream after the initial tick bite. Whereever the blood goes, there too will the Borrelia spirochete travel.  In about 18% of cases, the classic well known CDC clinical features of Lyme disease are not present.  If not caught early, the infection may then spread to many other parts of the body. This can occur over a period of days, affecting the central nervous system (brain), the peripheral nervous system (nerves), the cardiovascular system (causing pericarditis and/or 2nd or 3rd degree heart block and possible death if not treated immediately), the liver (causing mild hepatitis), the eyes (causing conjunctivitis). and the muscles and joints (causing migrating swelling, tenderness, and/or pain).”

Patients may develop cognitive problems from Lyme disease either early or many months or years after the initial infection.  Neuropsychiatric symptoms can emerge either early or late in the disseminated phase of infection.”

Also, please note that patients do not have to go through all phases of the disease.  They can hop right to the late stage in a relatively short time frame.  Some folks’ only symptoms are psychological.“Just as in neurosyphilis, nervous system involvement begins during early disseminated Lyme disease, when spread of the spirochetes can result in meningeal seeding [3]. As in syphilis, untreated Borrelia infection probably subsides in some patients but becomes chronic in others.”“Meanwhile, within weeks of entering the body, the spirochete, a bacterium that resembles the organism that causes syphilis, can invade the brain and spinal cord. At first, patients may develop meningitis, encephalitis or problems like pain or loss of sensation stemming from an attack on the nerves that emanate from the brain or spinal cord. But as with syphilis, months or years may pass before the late signs of a neurological infection appear.”“The clinical features may vary according to genospecies: B. garinii tends to cause a classic picture of neuroborreliosis as described below whereas B. afzelii tends to cause skin lesions and less specific neurological symptoms which may be more difficult to diagnose.”    LLMD Dr. Jemsek has this to say about less than 50% remember a bullseye rash:  In fact, this percentage is clearly an overestimate, as a majority of patients do not recall a rash, certainly not a classic bull’s eye form with central clearing.”

He also states:  “A little recognized fact about the EM rash is that it can recur, usually in the original site, with or without antibiotic therapy. We estimate that between 5-10% of patients demonstrate this phenomenon during their illness. Other patients remark that they have migratory rashes of moderate duration from time to time that remain unexplained. It is more common, in our experience, to observe the presence of recurrent EM after the onset of antimicrobial therapy. We note that some patients erupt with rash repeatedly while on antibiotic therapy, often in different areas. Eventually this dissipates as the patient improves on antibiotic therapy. Pressure points may play a role in the appearance of the rash, but gravitational influence does not appear to play a role in terms of the site of eruption, i.e. as one would see in a vasculitis-like presentation characteristic of most drug reactions. The first appearance of rash has been reported as late as 6 months into therapy (personal observation). This has led to obvious diagnostic challenges when one is on antibiotic therapy and has to consider a drug reaction. However, we have come to recognize that the LD rash on treatment presents as flat or occasionally raised coalescent islands of erythema, in contrast to the classic generalized morbilliform rash caused by a drug reaction. When confronted with this clinical picture, the Jemsek Specialty Clinic views this as a positive indication of therapeutic benefit, probably representing a dermal form of the “Herxheimer reaction”, and so we generally proceed cautiously on with antibiotic therapy, usually with eventual resolution of the rash.”  LLMD Dr. Jones states the following when asked if a rash occurs at the site of the bite or elsewhere:  “The ECM rash may appear at the site of the tick bite or elsewhere on the body. Not
 everyone will get a rash (approximately 50%) and some people will have multiple rashes. Less than 10% of children get a rash.”“Fewer than 50% of patients with Lyme disease recall a tick bite. In some studies this number is as low as 15% in culture-proven infection with the Lyme spirochete.  Fewer than 50% of patients with Lyme disease recall any rash.  Although the erythema migrans (EM) or “bull’s-eye” rash is considered classic, it is not the most common dermatologic manifestation of early-localized Lyme infection. Atypical forms of this rash are seen far more commonly. It is important to know that the EM rash is pathognomonic of Lyme disease and requires no further verification prior to starting an appropriate course of antibiotic therapy.”

Thankfully, Dr. Phillips knows the importance of words, and dispels the major myths.  Thank you Dr. Phillips and thanks for reading my rant.  This is too important not to comment on.

“LYME AND REASON: THE CAUSE AND CONSEQUENCE OF LYME DISEASE” presents an in-depth look at the cause and effect of Lyme disease, including the controversy over testing, the issues of misdiagnosis, and the personal struggles of medical professionals and patients contending with this life-changing illness.

Fox 5 News special report

  • Brian A. Fallon, MD, MPH, Director of the Center for Neuroinflammatory of the Lyme and Tick-Borne Diseases Research Center at Columbia University talks about the cause of Lyme disease and what you should do if you’re bitten by a tick!
  • Yale-trained Lyme disease expert Steven Phillips, MD, addresses the controversy surrounding Lyme disease, while Paul Mead, MD, Chief of Epidemiology and Surveillance Activity of The Bacterial Diseases Branch of the Centers for Disease Control and Prevention, offers the perspective from the country’s lead public health agency.
  • Singer and songwriter Dana Parish describes how Lyme disease temporarily derailed her music career during the prime of her life, and how she is now raising awareness about this debilitating illness!
  • Lyme patient and advocate Susan Green of the non-profit The National Capital Lyme and Tick-Borne Disease Association (NatCapLyme) talks about the burden placed on families in terms of costs for the treatment of Lyme disease!
  • Renowned oncologist Neil Spector, MD, shares his own personal story of his transition from doctor to patient, and how Lyme disease led to an emergency heart transplant!
  • Actress and TV personality Marla Maples talks about her own diagnosis of Lyme disease, and how she is encouraging other celebrities to share their stories to put the spotlight on Lyme!
  • Author, artist and designer Ally Hilfiger, the daughter of fashion icon Tommy Hilfiger, reflects on how Lyme disease stole her childhood, and her mind after being committed to a psychiatric hospital!
  • Related Stories
    Patricia De La Mora, Associate Professor of Clinical Pediatrics, Weill Cornell Medical College talks about prevention and how to keep your children safe, while Lawrence Putter, MD – Medical Director Lenox Hill Veterinarians discuss pet safety when it comes to ticks!
  • 12-year-old Julia Bruzzese shares her heartbreaking story of how Lyme disease has left her unable to walk, and how a blessing from Pope Francis on his visit to NYC last year has given her and her family hope for recovery!  News Video Here (Approx. 21 Min)

Lyme & Reason 2.0 The Voices of Change

Nov. 21, 2016

A follow-up to the groundbreaking “Lyme and Reason: The Cause and Consequence of Lyme Disease,” this follow-up — called “The Voices of Change” — focuses on the use of social media as a tool to inform and open the door to change on the Lyme disease front, and how patients, advocates, physicians and others are moving the conversation forward. Host Teresa Priolo sat down with TV personality and Lyme disease patient and advocate Yolanda Hadid about her ongoing battle with Lyme.

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