Showing posts with label Lyme diagnosis. Show all posts
Showing posts with label Lyme diagnosis. Show all posts

Monday, June 30, 2014

What does the "Facts" say?

(The title of this post is not a typo. It's a variation on a current 'meme' that has taken up residence in  my grey matter after listening to too many YouTubes by Ylvis. If you haven't been exposed to the gone-viral vids by comedic Norwegian brothers, Ylvis, just Google "What does the fox say?"

Here's something that came across my e-desk this morning. It is an email posted to a LLMD Listserv I read. I asked for his permission to reprint it here.  If you have any interest in the controversy about Lyme disease prevalence, diagnosis, and treatment, and wonder why so many of us are left out in the cold fending for ourselves against what we believe is a pandemic that is being ignored, read on.

"First off, they said it was a new disease, which it wasn't. Then it was thought to be viral, but it isn't. Then it was only transmitted by the Ixodes dammini tick, which is no longer considered a valid tick species. Then it was thought that seronegativity didn't exist, which it does. Then they thought it was easily treated by short courses of antibiotics, which sometimes it isn't. If you look throughout the history of Lyme disease, almost every time a major dogmatic statement has been made about what we know about this disease, it was subsequently proven wrong or underwent major modifications."
         --Dr. Ed Masters

"The controversy in the Lyme disease research is a shameful affair and I say this because the whole thing is politically tainted. Money goes to the same people who have for the last 30 years produced the same thing—nothing."
          --Dr Willy Burgdorfer (Discoverer of Lyme disease, from Under Our Skin)p

"Obviously this NPR piece (the recent interview with Alan Steere) was orchestrated for an agenda, probably to oppose the pending legislative efforts.

It does give insight about the definition of Lyme disease he and his cohorts advocate, and points out three fatal flaws that are present in his opinion:

1. It is implied that anyone agreeing with the restrictive definition of Lyme disease is "mainstream medicine" and anyone having a broader definition is only from "advocacy groups."

2. There is excessive confidence placed in current testing: when the (two tiered) testing conflicts with the clinical presentation it cannot be Lyme.

3. Authority should be given to the opinion currently advocated by CDC and IDSA.

It is well documented in the peer reviewed literature recognition of a broader definition of Lyme disease is more valid and many mainstream physicians and scientists recognize these findings. Advocacy groups read the scientific literature and other sources of information and decide for themselves which position is more plausible. No immune based testing can ever be reliable when testing for a microbe that has immune evasive mechanisms and current testing, including his, demonstrates the two tiered testing is very poor.

The whole basis of science is to question every hypothesis and to never defer to any so called authority opinion from CDC, IDSA or anyone else. If we do defer to authority, who has more authority in this dispute—detached bureaucrats and bench scientists who don't have ongoing clinical responsibilities (who dominate CDC and IDSA opinion) or those who conduct clinically relevant research and the front line physicians who have the long-term responsibility to treat Lyme patients? Continuing the circular logic advocated by Dr Steere will keep us going in circles rather that progressing forward with a better understanding of Lyme disease."

              --Robert C Bransfield, MD, DLFAPA


If you like what you learn from my blog, please subscribe. I will not spam you. I'm only interested in helping others (and me) recover from Neuro Lyme disease. 

-Bob

Monday, February 17, 2014

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. 

lymKPFA 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

Monday, February 3, 2014

Early Lyme disease with spirochetemia - diagnosed by DNA sequencing

Early Lyme disease with spirochetemia - diagnosed by DNA sequencing

Abstract

Background

A sensitive and analytically specific nucleic acid amplification test (NAAT) is valuable in confirming the diagnosis of early Lyme disease at the stage of spirochetemia.

Findings

Venous blood drawn from patients with clinical presentations of Lyme disease was tested for the standard 2-tier screen and Western Blot serology assay for Lyme disease, and also by a nested polymerase chain reaction (PCR) for B. burgdorferi sensu lato 16S ribosomal DNA. The PCR amplicon was sequenced for B. burgdorferi genomic DNA validation. A total of 130 patients visiting emergency room (ER) or Walk-in clinic (WALKIN), and 333 patients referred through the private physicians' offices were studied. While 5.4% of the ER/WALKIN patients showed DNA evidence of spirochetemia, none (0%) of the patients referred from private physicians' offices were DNA-positive. In contrast, while 8.4% of the patients referred from private physicians' offices were positive for the 2-tier Lyme serology assay, only 1.5% of the ER/WALKIN patients were positive for this antibody test. The 2-tier serology assay missed 85.7% of the cases of early Lyme disease with spirochetemia. The latter diagnosis was confirmed by DNA sequencing.

Conclusion

Nested PCR followed by automated DNA sequencing is a valuable supplement to the standard 2-tier antibody assay in the diagnosis of early Lyme disease with spirochetemia. The best time to test for Lyme spirochetemia is when the patients living in the Lyme disease endemic areas develop unexplained symptoms or clinical manifestations that are consistent with Lyme disease early in the course of their illness.

Read the whole study:

Saturday, October 19, 2013

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"

Tuesday, July 9, 2013

Foundation in Canada dedicated to Lyme Research

G. Magnotta Foundation for Vector-Borne Diseases becomes official Canadian registered charity
VAUGHAN, ON, Jul 3, 2013, 2013 (Menafn - Canada NewsWire via COMTEX) --Foundation is partnering with Toronto's new Humber River Hospital to establish Canada's first facility dedicated to Lyme disease and other vector-borne illnesses.

Rossana Di Zio Magnotta, president and CEO of Magnotta Winery Corporation, announced today that the G. Magnotta Foundation for Vector-Borne Diseases has been granted charitable status by the Canadian government.

Funds raised by the new foundation will be focused on establishing Canada's first facility dedicated to research, testing and treatment of Lyme disease and other vector-borne illnesses.

In addition, Magnotta announced the foundation is partnering with Toronto's new Humber River Hospital to house the facility when the state-of-the-art, acute care hospital opens in Fall 2015 in North Toronto at Keele and 401.

"We are thrilled to be working with Humber River Hospital to bring our long overdue facility for vector-borne diseases to Canada," said Magnotta. "The new Humber River Hospital is leading the way as North America's first fully digital hospital with a new model for patient care as well as aggressive green initiatives. Now it's including a world-class facility for researching Lyme disease and other vector-borne illnesses that will lead to better diagnostics and treatment for Canadians here in our own country. Currently, Canadians have had to leave Canada to get the necessary help."
Vector-borne diseases are transmitted to humans through the bite of an infected vector such as a mosquito or tick. Lyme disease is a common vector-borne disease that's currently affecting Canadians and is expected to grow.

Magnotta pointed to a recent study by the Public Health Agency of Canada and published in the Journal of Applied Technology that indicated the speed of tick invasion in eastern Canada is predicted to increase from 18% in 2010 to over 80% by 2020. Magnotta said this will likely result in a substantial increase in Lyme disease among Canadians. The two major factors dramatically influencing this rate of speed are more migratory birds carrying ticks coming across Canadian borders and climate warming.

Read the rest of the story here:

http://www.menafn.com/c76ade3d-1800-442f-b9d8-1a48af838990/G-Magnotta-Foundation-for-VectorBorne-Diseases-becomes-official-Canadian-registered-charity?src=main

Sunday, July 7, 2013

New Tick-Borne Illness May Be Misdiagnosed

Case reports look at 2 older patients with Borrelia miyamotoi infection
By Randy Dotinga
HealthDay Reporter
MONDAY, July 1 (HealthDay News) -- Physicians say a new kind of tick-borne infection that's similar to Lyme disease can mislead doctors into thinking it's a different condition.

Borrelia miyamotoi can cause flu-like symptoms that are similar to Lyme disease, researchers found.
"In the few case reports available for patients in the U.S., symptoms of B. miyamotoi infection have included fever, fatigue, body aches, joint pain and headache," said Dr. Bobbi Pritt, director of clinical parasitology at the Mayo Clinic in Rochester, Minn. Pritt was not involved in the research.
Researchers also think infection may cause dementia in the elderly, especially those who have conditions that weaken the immune system.
Lab tests also show low blood platelet counts and elevated liver enzymes, Pritt said...
Read the rest of the story:

Friday, June 28, 2013

How Quickly Can a Tick Infect You?

Clinical evidence for rapid transmission of Lyme disease following a tickbite

Eleanor D. Hynote, Phyllis C. Mervine, Raphael B. Stricker
Diagnostic Microbiology and Infectious Disease, online
before print, November 20, 2011.

http://dx.doi.org/10.1016/j.diagmicrobio.2011.10.003

Abstract
Lyme disease transmission to humans by Ixodes ticks is
thought to require at least 36–48 h of tick attachment. We
describe 3 cases in which transmission of Borrelia
burgdorferi, the spirochetal agent of Lyme disease, appears
to have occurred in less than 24 h based on the degree of
tick engorgement, clinical signs of acute infection, and
immunologic evidence of acute Lyme disease.

Health care providers and individuals exposed to ticks
should be aware that transmission of Lyme disease may occur
more rapidly than animal models suggest. A diagnosis of Lyme
disease should not be ruled out based on a short tick
attachment time in a subject with clinical evidence of B.
burgdorferi infection.


The rest of the study can be found here: http://dx.doi.org/10.1016/j.diagmicrobio.2011.10.00

Petition: Calling for a Congressional investigation of the CDC, IDSA and ALDF

Letter to the Editor, The Lancet Infectious Diseases Published May 2012


Friday, June 21, 2013

Congressional investigation of the CDC, IDSA and ALDF?

The U.S. Senate: Calling for a Congressional investigation of the CDC, IDSA and ALDF

The U.S. Senate: Calling for a Congressional investigation of the CDC, IDSA and ALDF


Sign the petition:
Petitioning The U.S. Senate 

This petition will be delivered to:
  • The U.S. Senate
  • The U.S. House of Representatives
  • The Governor of NH
  • The NH State Senate
  • The NH State House
  • The U.S. Senate
  • United States Senator for Connecticut
  • Senator Richard Blumenthal
  • Comptroller General of the United States
  • Gene L. Dodaro
  • Congressional Relations GAO
  • Katherine Siggerud
 
We are experiencing a health crisis here in New Hampshire and across the country with the growing epidemic of Lyme disease. A number of legislators have personally been affected and have introduced legislation to address this problem. Here are just a few recent examples.

We are experiencing a health crisis here in New Hampshire and across the country with the growing epidemic of Lyme disease. A number of legislators have personally been affected and have introduced legislation to address this problem. Here are just a few recent examples.

Massachusetts
Representative David Linsky: “The occurrence of Lyme disease has reached near epidemic proportions in Massachusetts. Virtually every family in Massachusetts has been affected by Lyme disease in some way. Lyme disease is a public health crisis in the Commonwealth.” Read more…

 Connecticut, Rhode Island, New York
Senator Richard Blumenthal: "Today for me culminates more than a decade of work and probably a decade more, because I've seen firsthand the devastating, absolutely unacceptable damage done by Lyme disease to individual human beings, Connecticut children and residents whose lives have been changed forever as a result of Lyme disease” Read more….

New Jersey, Pennsylvania
Congressman Chris Smith: "It seems everywhere I go, someone comes up to me to talk about how Lyme disease has severely impacted their lives or someone they know," Read more…

Virginia
Virginia Governor’s Task Force Chair Michael P Farris, Esq: "Doctors here in Virginia are committing malpractice by saying the ELISA test is sufficient." Read more…



Sign the petition:

Monday, January 7, 2013

Funds available to assist with lyme and co-infection testing

Just a reminder that Lyme-TAP has funds available to help out with the cost of testing for Lyme and co-infections for both adults and children.

They will cover up to 75% of allowable testing, either via reimbursement (you pay for the tests, then get money back), or via prepayment (they write a check payable to the lab that you're using). 

Read more at http://LymeTAP.com.

Wednesday, November 14, 2012

Some Books about Lyme

Here are some more books about Lyme disease and treatment: 


  • The Lyme Disease Survival Guide: Physical, Lifestyle, and Emotional Strategies for Healing - Connie Strasheim
  • Coping with Lyme Disease: A Practical Guide to Dealing with Diagnosis and Treatment - Denise Lang
  • Beating Lyme: Understanding and Treating This Complex and Often Misdiagnosed Disease - Constance A. Bean
  • The Lyme Diet: Nutritional Strategies for Healing from Lyme Disease - Nicola McFadzean ND
  • Insights Into Lyme Disease Treatment: 13 Lyme-Literate Health Care Practitioners Share Their Healing Strategies - Connie Strasheim