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

Poughkeepsie Journal to report on Lyme carditis deaths

I received this in my email today and wanted to pass it along. -Bob



Dear Friends and Associates,

Please share this with others.

Last week the CDC announced  information about deaths due to Lyme Carditis:
http://www.cdc.gov/lyme/signs_symptoms/lymeCarditis.html

Once again Mary Beth Pfeiffer (of the Poughkeepsie Journal (http://www.poughkeepsiejournal.com/) is following up on this with a story which is so important for awareness of both physicians and residents!

Although the CDC reports this as rare at 1%, it may be more common than that. Even if only 1% that is at least 3,000 people when there are over 300,000 a year who contract Lyme disease. We need our medical community on heightened awareness to save unnecessary fatalities.

Additionally, 17 year old honor student Joseph Elone's death attributed to tick-borne disease was front page news in this region in Aug. and Sept. Then we heard nothing more. I hope Mary Beth has an answer for us about what happened to him. If it was Lyme disease, the BIG question we will never know, would his death have been avoided by treatment? Joesph lies in a grave, perhaps a tragedy that could have been avoided for him and his grieving family!

Thanks to the CDC and Mary Beth for bringing awareness to this serious symptom caused by the Lyme spirochete! Let's save lives and let's get these cases reported so we know the true incidence of sudden death from Lyme carditis!

Get Monday's newspaper or online version. Thank the reporter by recommending and commenting. Much gratitude to the CDC for bringing awareness to this!

I always have to add: It is well past time for our government to focus on serious research to reduce tick numbers or STOP their ability to transmit disease pathogens to us (Such research is no longer funded by the NIH. Does that make any common sense? No, of course not!)

Wishing you all the Joys of the Holidays and a Happy, HEALTHIER New Year!

Jill Auerbach
Hudson Valley Lyme Disease Association, Chairperson
Dutchess County Legislative Task Force on Tick and Lyme Disease Reduction, Member
Stop Ticks On People (S.T.O.P.), Board Member
"What's the problem? Well it's the ticks of course!"
PS: If the story does not cover all the other links about this. I will follow up with additional information the CDC sent to myself and others on this topic.

Lyme autopsies rarely performed

Noted Lyme pathologist Dr. Alan MacDonald made a comment today about Lyme caused deaths. I thought it was worth repeating.

Death Certificate wordings are usually worthless (medically and scientifically). "Cardiopulmonary arrest" leads the list of all death certificate causes of death. We all die of "cardiopulmonary arrest." That diagnosis is the fast-and-dirty wording for most death certifictions. It is un-challengeable.

The actual anatomic diseases are only uncovered by carefully-performed autopsies. Autopsies may also be done in haste by autopsy assistants with only brief,
"cameo" appearances by the supervising pathologist in the autopsy suite.

The carelessness with certifications on death certificates is used to the advantage of the IDSA and CDC statisticians to "prove" that fatalities do not happen in Chronic Lyme borreliosis.(sic)

Lyme-focused autopsy studies are just not available to most persons. It is very time consuming (for no monetary reimbursement to the pathologist).

So, a labor of love is called for to properly perform an autopsy in which the spirochete is the actual "agent of death"

Medical researchers report four deaths due to Lyme carditis

Written by

Roberto LoBianco

For the Poughkeepsie Journal

Four deaths have been reported in medical journals from a heart condition associated with Lyme disease called Lyme carditis. The condition is being investigated in the death of a 17-year-old Poughkeepsie High School honor student who died Aug. 5; evidence of Lyme disease was found in his blood, organs and heart.

The cases, drawn from references provided by the U.S. Centers for Disease Control and Prevention, include:

• A 37-year old man who died in 2008 the day after visiting a doctor. The man reported a month-long series of fevers, rash and other symptoms. According to a report published in the journal Cardiovascular Pathology, he had an irregular heartbeat and tested positive for Lyme disease the day before he died. An autopsy found that he also suffered from heart inflammation.

• A patient who died from cardiac arrest caused by Lyme myocarditis or heart inflammation. The patient, described in a 1993 report in the Journal of Neurology, was among patients with Lyme myositis, or muscle inflammation, between the ages of 37 and 70. They came down with symptoms, including muscle pain, tenderness, swelling and weakness.

• A 31 year-old male farm worker in Great Britain — the only geographical reference in the four articles — who tested positive for Lyme disease on his first screening. An autopsy found the man suffered from an enlarged heart and an irregular heart beat; he had no telltale Lyme disease rash before becoming ill, according to a 1990 article in the Postgraduate Medical Journal. The article recommended that doctors "be especially vigilant with young patients from rural areas presenting with heart block," a disturbance of the heart's rhythm.

• A 66-year old man who died of "cardiac involvement of Lyme disease." According to a 1985 report published in the Annals of Internal Medicine, he died 18 hours after being taken to the hospital with chills, muscle pain and other symptoms. Lyme spirochetes were found in the victim's heart tissue and an autopsy found that he had an inflamed heart.

Carditis occurs in 4 to 10 percent of cases of Lyme disease and usually begins three to six weeks after the initial illness, according a 2012 report published in the journal Clinical Medicine and Diagnostics.

In a statement, the CDC said it "recommends treatment, regardless of serologic [blood] test results, for patients suspected of having early stages of Lyme disease. This would include patients suspected of having Lyme carditis."

Read the story at the source:

http://www.poughkeepsiejournal.com/article/20131006/NEWS01/310060047/Medical-researchers-report-four-deaths-due-Lyme-carditis