Saturday, May 30, 2015

Poughkeepsie Journal: Lyme disease panel leaves out key players

Here are some excerpts from the article linked above.  Please read the entire article at the link above as it covers so many points that could not possibly be included here! It is covered expertly by Reporter Mary Beth Pfeiffern who, along with others like John Ferro at the Poughkeepsie Journal, have been exposing this devastating health issue for our region, the USA and the world, caused by the bite of a miniscule tick.
PLEASE share this, recommend, comment, tweet, and thank Mary Beth Pfeiffer for this exposure. The Poughkeepsie Journal has been at our side in pushing for solutions. they are due much gratitude!
--- a few excerpts follow ---

She comes from a state with fewer than 10 Lyme disease cases a year. She has not been involved in Lyme disease causes, but rather in funding cancer research.

Yet she has been named "consumer representative" on a panel that will rewrite treatment guidelines for a tick-borne illness with 20,000 reported cases in the mid-Hudson Valley from 2007 to 2013 — and 300,000 nationwide annually. This while federal standards say the panel should include not one but two people to represent the public: "a current or former patient and a patient advocate." ..As it stands now, it has neither....

...The guidelines update .. 11 medical societies are represented on the panel; however, no members were appointed from the International Lyme and Associated Diseases Society, or ILADS, the leading tick-borne diseases medical group...

"How can these panelists be impartial when they have staked their reputations on the position that chronic Lyme does not exist?" ...advocates say have significant intellectual and financial conflicts of interest....

...The Institute of Medicine said the controversy was "illustrative" of the need for a uniform process across diseases, involving doctors, patients and scientists with diverse viewpoints. Its report made clear that conflicts of interest could lead to bias by, among others, "specialty societies, which might benefit or whose members might gain from guideline recommendations."...

Read at:

Jill Auerbach
Hudson Valley Lyme Disease Association, Chairperson
Dutchess County Legislative Tick Task Force, Member
Stop Ticks On People (S.T.O.P.), Board Member
NYS Coalition on Lyme and Tick-borne Disease, Member

"What's the problem? Well it's the ticks of course!"

Friday, May 29, 2015

Chart of Lyme disease coinfections and symptoms!

If you haven't seen this amazing chart, click here and check it out. It's very inclusive. I haven't studied it thoroughly to look for errors, but it's similar to something I was thinking about putting together myself. A little searching showed once again there's no reason to reinvent the wheel.

Delayed diagnosis of Lyme disease has devastating effect on patients

Another excellent effort and article by folks.


According to a nationwide survey by, only 7% of chronic Lyme patients are diagnosed and treated within critical thirty-day window essential to cure.  More than half wait two years or more for correct diagnosis. 

Press Release: For Immediate Release San Francisco, CA… Read More »

Get it Right, Treat the Bite!!!  

Just Bitten or Need Prevention Tips?

Children With Lyme & Tick Borne Diseases

Lyme & Tick Borne Disease Information

Wednesday, May 27, 2015

How Long Before a Tick Makes You Sick?

Below are (2) three minute YouTube videos with Prof Holly Ahern. Professor Holly Ahern is a member of the NYS Coalition on Lyme and Tickborne Disease, which worked on the 2014 NYS Law to protect patient's rights to treatment.


How Long Before a Tick Makes You Sick?


Will 2 Pills Prevent Lyme Disease?

Why we eat fermented foods (animation)

Clever video about the advantages of fermented foods. 

Requests for a Lyme borrelia Focused Autopsy

(I know, the formatting of this post isn't very good. I'll fix it when I'm not doing it on the iPhone.

Lyme borrelia focused Autopsy in 2014- Special request by inmacdonald » February 10th, 2014, 3:58 pm

For General Distribution: Notes on the Requests for a Lyme focused Autopsy

I am writing to you to provide general information about the time consuming process of a borrelia/lyme focused autopsy in the situation of a patient who may or may not have had chronic active disease at the time of Death.

An autopsy of this type is a huge undertaking for the pathologist.
In most cases , there is no payment for the pathologist and laboratory
special services connected with such an undertaking..

Accordingly, since there are no guarantees that hours of work will yield an answer in the affirmative or in the negative, both the family and the pathologist should enter into information sharing concerning borrelia test results during life and
therapies administered, and clinical improvements or deteriorations from such efforts.

If the condition of Chronicity was arthritis, then a problem oriented investigation might be confined to the joint with the maximal symptoms.

If the condition was cardiac in nature, then limited examination of the heart would be appropriate.

If the condition was in the nervous system, then examination of the brain only would be the proper pathway.

Brain banks are established around the country at Medical Schools for autopsy study of the brain- with donations welcome from those who were neurologically "normal" at death, and also those with defined or poorly understood brain diseases at the time of death.

The Brain bank route is the best , in my opinion for potential neuroLyme cases, because it places
the patient brain examination in the hands of Medical school professors
of neuropathology.
There is no cost to the family for these studies.

Often, the brain removal itself is paid for by the brain bank. Otherwise the family must
assume some of the cost of organ removal and proper legal transport to a brain
center.and time is of
the essence in completing the brain removal, to preserve tissue for
examination. One half of the brain is quickly frozen ( either right or left) and
is transferred to the brain tissue resource center. Spinal fluid is also obtained.
The other half of the brain is placed in liquid fixative ( Brain formalin) and is
also transferred to the Brain bank.
If Spinal Cord disease was noted during life, then the more tedious removal of the Spinal
cord is indicated.
In all brain and Spinal cord removal procedures, the personnel mus wear protective
clothing an masks and Kevlar gloves to avoid the possibility of
being exposed to an infectious illness which was present at death
but not diagnosed during life.

In all autopsy investigations, other than those mandated by law as Forensic
autopsies, appropriate permission must be sought from the legitimate
next of kin. There is a protocol in each state which guides this permission
process For example, if the decedent died without a spouse and without living parents, then each and every sibling MUST consent to the Autopsy. If a Single sibling votes against the autopsy, the procedure will not be legally permitted.
For cases in which the blood relatives are more distant than siblings of the
decedent, please consult the Hospital Administration, if the death was in hospital,
or the Local Health Department.

Ideally, there is something to be learned from each and every autopsy.
In practice., many autopsy examinations do not produce "teachable moments"
for either the family of the decedent or the physicians who cared for the patient.
If "routine" studies do not answer the family's questions, it is possible, in select cases to enlist the advanced services of a borrelia/Lyme Research facility
Borrelia are difficult, very very difficult , to see microscopically in tissues.
Expert examiners with specialized expensive microscopes and with a
refrigerator full of specialized antibodies to borrelia and with the
safety laminar air flow hoods to attempt to cultivate borrelia from
autopsy tissue.- all of these special talents are often necessary to prove
that borrelia was present in the decedent at the time of death.

Individuals with this special expertise are few in the USA and in Europe.
Workload and Teaching responsibilities often mandate that Lyme focused
autopsies are turned away. So to receive a Lyme focused autopsy is a special event for the professionals doing the work and for the curious family. It is not to be assumed that all requests can be accepted.

An Autopsy is a model, nonetheless ,for medical education.


Alan B.MacDonald MD, FCAP, FASCP
February 10, 2014

Monday, May 25, 2015

May 22nd Slate article on seriousness of tick borne illness

The above article (or parts of it) might make a nice handout for Lyme patients. It provides info. on how to protect oneself from ticks. That a major online publication is emphasizing the seriousness of tick borne illness is interesting. 

Peter Kraus
recovering Lyme patient

Sunday, May 24, 2015

Antibiotics improve autistic child's symptoms

Antibiotics improve autistic child's symptoms, validating the autism-gut microbe connection -

Depression and infection

New research is revealing that many cases ofdepression are caused by an allergic reaction to inflammation.  Tim de Chant of NOVA writes: "Inflammation is our immune system's natural response to injuries, infections, or foreign compounds. When triggered, the body pumps various cells and proteins to the site through the blood stream, including cytokines, a class of proteins that facilitate intercellular communication.  It also happens that people suffering from depression are loaded with cytokines."  Inflammation is caused by obesity, high sugar diets, high quantities of trans fats, unhealthy diets in general, and other causes.

By treating the inflammatory symptoms of depression — rather than the...

Read the rest:

Saturday, May 23, 2015

Excellent article on Morgellons disease

Mystery Of Morgellons - Disease Or Delusion - Scientific Hypothesis Of Connection With Lyme Disease

Cindy Casey Holman, RN, Director
Charles E. Holman Morgellons Disease Foundation

"Facts are stubborn things; and whatever may be our wishes, our inclinations, or the dictates of our passions, they cannot alter the state of facts and evidence."  ~John Adams

Friday, May 22, 2015

U.S. bill to fund tick-borne disease research moves forward to House vote

Good News!  A bill that would include research for Lyme and tick-borne diseases (TBD) funded by US government at levels appropriate to the dire need is making its way through Congress! We need real answers to reduce suffering, we need accurate tests, and we need to reduce the ability of ticks to spread pathogens to us, our children, our pets, and wildlife! 

                                ---------------- Read below -------------
 H.R. 789, the Tick-Borne Disease Research Accountability and Transparency Act, sponsored by Representative Chris Gibson's (R Kinderhook) was included in the bipartisan "21st Century Cures" Act, which passed unanimously (51-0) in The House Energy & Commerce Committee today. The "21st Century Cures" Act will come before the full House for a vote later this summer.
Here is Congressman Gibson's press release on passage:
And John Ferro of the Poughkeepsie Journal has already jumped on this news! Please thank him and the Journal for their support!
       ------ More about this below ----
H.R.789 - Tick-Borne Disease Research Accountability and Transparency Act of 2015:\ 

The 21st Century Cures Act: UNANIMOUSLY APPROVED
May 21, 2015 

WASHINGTON, DC – The House Energy and Commerce Committee today unanimously approved the nonpartisan 21st Century Cures Act 51-0. The nonpartisan legislation will help to modernize and personalize health care, encourage greater innovation, support research, and streamline the system to deliver better, faster cures to more patients. The bill has seen continued support throughout the process. H.R. 6, the 21st Century Cures Act, was authored by full committee Chairman Fred Upton (R-MI), Oversight and Investigations Subcommittee Ranking Member DeGette, full committee Ranking Member Frank Pallone, Jr. (D-NJ), Health Subcommittee Chairman Joe Pitts (R-PA), and Health Subcommittee Ranking Member Gene Green (D-TX).
"This historic day marks a big bipartisan step forward on our path to cures," said Upton. "We have all said too many early good-byes to people we love and treasure. Every single person has a common goal: we want more time with those we love. In this, the greatest country in the world, Americans deserve a system second to none. We can and must do better. The time for 21st Century Cures is now."
"In the last century, American medicine leapt from medicine shows to the mapping of the human genome," said DeGette."With the 21st Century Cures Act, we seek to support the biomedical community in making a similar leap forward in this next century. With billions in support for our premier research and development institutions and comprehensive reform of our systems, 21st Century Cures will make a real difference in the lives of patients and their families."
"Today's vote is an important next step for this committee as we work to get 21st Century Cures enacted into law by the end of the year," said Pitts. "This bill is improved since the Subcommittee marked it up on May 14, and that demonstrates the collaborative nature of our effort. Landmark legislation like 21st Century Cures illustrates that Congress can and should strive for ambitious goals. I want to thank my colleagues on both sides of the aisle for their hard work to modernize our discovery, development and delivery system, which will give hope to millions of Americans for an accelerated path to cures."
"Our committee has had the unique opportunity to help usher our health care system into the 21st century, and I am glad that we have come together to begin to do so in a bipartisan way with this bill," said Pallone. "The 21st Century Cures Act will ensure that innovative treatments are getting to those who need them most, giving real hope to patients and their families. Critical funding for our nation's top research institutions will help to bolster biomedical research, advance cutting edge science, and further improve the process by which life-saving cures are discovered and approved. Today's vote is an important step toward improving the health and lives of millions of Americans."
Green added, "I'm proud of the final bill that was voted out of Committee, which will improve the innovation ecosystem for the development of life-saving medical breakthroughs, foster the development and the interoperability of health information technology, and better leverage critical resources to facilitate the discovery of new cures. After one year of deliberation, research, and stakeholder input we're one step closer to delivering new cures and therapies, and hope to patients."
See more at:

Wednesday, May 20, 2015

Help support Lyme Literate MDs

All of my guys have Lyme disease

Sean Patrick Maloney for Congress


A while back, I spoke with the owner of a tree-cutting business in Garrison, New York. “All of my guys have Lyme disease,” he told me. All 12 of his employees had been infected.

Lyme disease is an epidemic in the Hudson Valley. It’s on our playgrounds, at our parks, and in our backyards. In fact, it’s now one of the most common and fastest growing infectious diseases in the U.S.

Improving reporting and diagnosis could help stop Lyme, but it will only happen if Congress funds it. I’m calling on Congress to fund research to stop and prevent Lyme disease. Will you stand with me?

Click here now to add your name and tell Congress to fund research to stop the spread of Lyme disease.

Thanks for helping us stand up for the hundreds of thousands of Americans suffering from this disease.