KPFA series of Radio shows on Lyme - updated yet again

Dennis Bernstein (host of Flashpoints on Pacifica Radio Network),  and Jessica Bernstein (no relation, doctor of psychology) have put together a powerful series of radio shows about Lyme disease and the political and health entanglements, implications and current research in the field. The stories are moving, informative, up to date, and alarming. I encourage anyone interested in public health to listen to these, whether you are a health-care provider, researcher, Lyme patient, or healthy citizen. These shows will explain the controversy over Lyme detection, prevention, treatment, insurance coverage, and more.

Here are descriptions and links to the past shows if you'd like to check them out:

1. Dr. Jessica Bernstein and Dr. Marc Conant – who was at the forefront of the AIDS movement – discussed the parallels between the way the federal government handled the AIDS epidemic and how they're handling the Lyme epidemic: http://www.kpfa.org/archive/id/99148

2. Writer Amy Tan discussed her experience with neurological Lyme disease and Bay Area Lyme expert Dr. Steven Harris explained what Lyme disease is and why it's so difficult to treat. The Amy Tan interview was on of the most powerful in the series to date: http://www.kpfa.org/archive/id/99376

3. Microbiologist Tom Grier discussed how people with Lyme are being misdiagnosed with MS and Dr. Alan McDonald discussed how they're being misdiagnosed with Alzheimer's:http://www.kpfa.org/archive/id/99572

4. Lyme Expert Dr. Ray Stricker (Amy Tan's doctor) and Marianne Middelveen discussed their latest study conducted by an international group of scientists indicating that Lyme disease may be sexually transmitted. Then filmmaker Andy Abrahams Wilson who directed the Lyme documentary, "Under Our Skin" was interviewed. Andy explained some of politics that are interfering with Lyme patients receiving treatment http://www.kpfa.org/archive/id/99786

5. Dr. Richard Horowitz, author of "Why Can't I Get Better?" is an amazingly articulate speaker. His conversation with Dennis is chock-full of statistics and useful information for anyone interested in Lyme disease, whether they have it or not. His estimations of the number of people with Lyme disease is staggering. It's clear from the scientific research that he cites, and from his experience with over 12,000 Lyme disease patients that we are truly looking at an epidemic, with most likely one to two million infected US citizens. This is a must listen, if you have any interest in Lyme disease: https://www.kpfa.org/archive/id/99859

6. Hear Dennis Bernstein interviewing director David France of, "How to Survive a Plague."  David has been deeply entrenched in AIDS activism for the past 30 years but got neurological Lyme during the height of the AIDS crisis so presents a unique perspective about the parallels and differences. check out the amazing interview in the archives: https://www.kpfa.org/archive/id/100253

7. U.C. Berkeley researcher Bob Lane discussed his extensive research on the prevalence of Lyme disease in California that he has been conducting over the past 30 years: http://www.kpfa.org/archive/id/101114

8. This show covered the recent Lyme disease protest of the Infectious Diseases Society of America (IDSA). Protest organizer Josh Cutler discussed the reason for the protest and the reaction to their efforts:http://www.kpfa.org/archive/id/103052. The protest was also covered by Fox 5 news:http://www.youtube.com/watch?v=ctWWTUZcL2c

9. Filmmaker Sini Anderson discussed Lyme from a feminist perspective. After her Lyme diagnosis, she began noticing just how many women have late-stage Lyme disease and in particular women in the feminist community. She discussed her latest film (in production) about feminists with late-stage Lyme disease:http://www.kpfa.org/archive/id/103653

10. 

KPFA continues their groundbreaking investigation into the Lyme disease epidemic, with a hard hitting three part series about the failure of government agencies to address this health crisis, the widespread under-reporting of the epidemic and a new kind of activism that’s emerging from sick patients who have been crippled by the disease. Also, we’ll be joined by Barbara Lubin of the Middle East Children’s Alliance, for an update on Gaza and information on an upcoming event.

Click on the link below to listen to the show

http://www.kpfa.org/archive/id/106663

Persistent Lyme Empiric Antibiotic Study Europe (PLEASE)

This ongoing scientific study came to my attention today. It's being done in Holland, and the results should be known by spring, 2014. The sample size is pretty big -- 270 people. They are looking at the efficacy of intense IV therapy for Lyme (2000 mg of IV ceftriaxone 4 times a day). That's twice the dose I have done and most CLD (chronic Lyme disease)  patients I know have used. 

I'm pleased to see that the study recognizes ILADS as a legitimate medical entity with a set of treatment guidelines. It's also encouraging to see that this study is listed on the NIH (US National Institute of Health) web site. 

Estimated Enrollment:	270
Study Start Date:	September 2010
Estimated Study Completion Date:	February 2014
Estimated Primary Completion Date:	October 2013 (Final data collection date for primary outcome measure)

Estimated Enrollment:	270
Study Start Date:	September 2010
Estimated Study Completion Date:	February 2014
Estimated Primary Completion Date:	October 2013 (Final data collection date for primary outcome measure)

http://clinicaltrials.gov/ct2/show/NCT01207739?term=borrelia&rank=14

This study is ongoing, but not recruiting participants.

Sponsor:

Radboud University

Collaborators:

Sint Maartenskliniek

ZonMw: The Netherlands Organisation for Health Research and Development

Information provided by (Responsible Party):

Radboud University

The purpose of the study is to establish whether prolonged antibiotic treatment of patients diagnosed with proven or presumed PLD (as endorsed by the international ILADS guidelines) leads to better patient outcome than short-term treatment as endorsed by the Dutch CBO guidelines.

Condition	Intervention	Phase
Lyme Disease Borrelia Infection	Drug: Doxycycline Drug: Clarithromycin and hydroxychloroquine Drug: Placebo	Phase 4

Study Type:	Interventional
Study Design:	Allocation: Randomized Endpoint Classification: Efficacy Study Intervention Model: Parallel Assignment Masking: Double Blind (Subject, Caregiver, Investigator, Outcomes Assessor) Primary Purpose: Treatment
Official Title:	Persistent Lyme Empiric Antibiotic Study Europe. A Prospective, Randomised Study Comparing Two Prolonged Oral Antibiotic Strategies After Initial Intravenous Ceftriaxone Therapy for Patients With Symptoms of Proven or Possible Persistent Lyme Disease http://clinicaltrials.gov/ct2/show/NCT01207739?term=borrelia&rank=14

New Species of Lyme Bacterium in California

SPOTTED FEVER RICKETTSIOSIS USA: (CALIFORNIA) NEW SPECIES

A ProMED-mail post
<http://www.promedmail.org>
ProMED-mail is a program of the
International Society for Infectious Diseases
<http://www.isid.org>

Date: Wed 30 Oct 2013
Source: San Ramon Patch [edited]
<http://sanramon.patch.com/groups/politics-and-elections/p/new-disease-increases-risk-of-tickbourne-illness-in-california>

Fall and winter bring on young active ticks, and with that the risk of
disease, according to a newsletter released by the Contra Costa
Mosquito and Vector Control District. "In addition to spreading Lyme
disease, researchers now say ticks are also responsible for
transmitting a previously unknown disease that is related to Rocky
Mounted spotted fever," the release stated. The new bacterium was
recorded in 4 human cases statewide, with 2 of those cases in Contra
Costa County.

The newsletter reads:

"The _Rickettsia philipii_ bacterium is transmitted by the Pacific
Coast tick (_Dermacentor occidentalis_), which is one of the 3 primary
ticks that can be found across California. So far scientists have
found ticks infected with this new bacterium in at least 8 California
counties.

"While a small percentage of adult Pacific Coast ticks have tested positive for the disease thus far, researchers find that young nymphs
are testing positive as well. This makes prevention very important
because these young ticks are very small and very difficult to see.
Symptoms can include fever, headache, fatigue, and what appears to be
a blackened scab at the site of a tick bite.