My Interview with Writestream Radio

writstreamI was thrilled to be able to talk about Lyme disease and share my story recently on Writestream Radio with Dariaanne.

I am sure it will resonate with so many of you as those of us with Lyme disease have learned about suffering in a whole new way. Although our situations and symptoms may be different, our pain is not.

Remember it’s a marathon not a race, and the more arsenal you have, the easier it is to climb up that hill and get to the other side. It’s a battle no one chooses but one that can be fought and won.

Hope this interview encourages you and better equips you with the knowledge you need to continue the battle.

Hugs to you my warrior friends!

Tick Infection Can Happen in Less than 10 Minutes

ticksAccording to the CDC, a person can be infected with a tickborne disease in as little as 10 minutes.

Brazilian ticks that carry Rocky Mountain spotted fever passed the disease to animal hosts in as little as 10 minutes if they had recently fed on another animal, a new study found.

“The current literature, including medical textbooks and guidelines for the general public, has repeatedly advised that an infected tick requires a minimum feeding period varying from 2 to 10 hours to transmit Rickettsia rickettsii – the bacterium that causes Rocky Mountain spotted fever – to humans,” study co-author Marcelo Labruna told Reuters Health in an email.

In the eastern United States, R. rickettsii is transmitted to humans typically by the D. variabilis tick in the adult stage, commonly known as the American dog tick, which feeds chiefly on domestic dogs.

Similarly to the circumstances in the São Paulo, Brazil, metropolitan area, most of the Rocky Mountain Spotted Fever cases in the eastern United States have occurred in children and women, and infections in dogs have been associated repeatedly with an increased risk for disease in owners.

Because numerous reports of infected humans were associated with tick-infested dogs or tick removal within 4 weeks of disease onset, researchers have proposed that many of these cases were a result of direct contact with rickettsiae from tick body fluids during tick removal.

The current literature has considered that an attached tick needs several to many hours of attachment for a successful inoculation of RMSF into human skin. Once it is forcibly removed from a host, a partially fed tick loses its discriminatory senses and strives to feed wherever possible on any available vertebrate animal.

Thus, it is reasonable to consider that tick removal habits in RMSF-endemic areas could have implications for the transmission of R. rickettsii, not only caused by potential direct contact with tick fluids, but also, as shown in this study, because detached ticks could readily attach to humans and inoculate them with rickettsiae within a few minutes.

Read more at Reuters Health.

Reuters Health

Tune in Tuesday for My Interview on Writestream Radio

WstreamWhiteLogoTM1Tune in this Tuesday, October 7, to Writestream Blog Radio from 1:05 to 1:55 pm where I’ll be talking about my story, sharing facts about Lyme disease as well as the work I’ve been doing as a Lyme advocate. The chat room will be open so call 347-945-7246 with any questions or comments. Look forward to interacting with you on Tuesday. Hold on to hope. We are a community, and we need each other.

You are not alone. Remember that each and every day as you walk this journey.

And reach out to me if you have not found support. There are several different communities that I can point you to where you can find hope. This is not a journey one can walk alone.

National Lyme Disease Conference

ILADS ConferenceI wanted to pass on to you that the International Lyme and associated Diseases Society (ILADS) is having their national Lyme Disease Conference from October 9-12 in Washington DC.

There is a fundamentals course on the 9th entitled, “The Fundamentals of Diagnosing and Treating Tick-Borne Illness.”

The scientific conference is being held the 10th thru the 12th, and is entitled, “15th Annual Scientific Conference: Neurological Spectrum.” It will provide evidence based medicine and will describe the clinical spectrum of tick-borne diseases, their diagnosis and treatment, and the assessment of co-morbid conditions.

If you are a healthcare practitioner or know of any health care practitioners who would like to learn more about diagnosing and treating Lyme disease this would be a wonderful conference for them to attend. Click here to read more and to sign up: ILADS-Washington DC.

Or if you have a loved one with Lyme disease and would like to learn more, please call ILADS to see if there is room for you to sign up. There are always some spots reserved for advocates and loved ones.

This conference will include the top Lyme physicians, including my doctor, Dr. Joseph Jemsek.

It has been approved by the American Medical Board so physicians can receive CME credits for attending. In addition, this conference is pending approval by the Nursing board for 25 Nursing CEU credits.

Once it is approved, I will be there to sign in and hand out certificates to the nurses. It would be nice to meet any of you attending.

Statewide Lyme Disease Legislation

USThe LDA has compiled data on bills, laws, resolutions, and hearings in the various states across the United States. It includes the respective name, purpose and action that has been taken on each by the appropriate governing body. I found it to be quite interesting and informative.

To read it, click here.

Research Discussing the Importance of Long-term Lyme Disease Treatment

research_11Some have asked if there are any research articles that discuss the importance of long-term treatment for chronic Lyme disease in certain situations. Here is one that you might find helpful: Overview of Evidence Supporting the Need to Update the Infectious Disease Society of America’s Guidelines Regarding the Treatment of Lyme Disease.

I will continue to post more so you can understand the science behind the importance of treating beyond the standard two weeks in certain cases.

Mayday Project

Lyme Activists to Target IDSA’s IDWeek Conference
Philadelphia, PA – WEBWIRE – Sunday, September 21, 2014

MayDayOn October 10th and 11th, 2014 chronically ill Lyme disease patients and supporters from around the United States will gather for a protest at the IDWeek medical conference in Philadelphia.
They will call on the Infectious Diseases Society of America (IDSA) to update its guidelines for Lyme disease to reflect the current state of science and improved standards for patient care.
Protest co-organizer Josh Cutler has been fighting late stage neurological Lyme disease for nine years. This condition affects the brain, the central nervous system, and the autonomic nervous system that regulates blood pressure and other vital functions.
“We are uniting to demand that IDSA stop its misrepresentation of science and update its guidelines for Lyme,” says 34-year-old Cutler, who went from good health and a high paying IT job to near total disability after he was infected with Lyme. “IDSA needs to put our health first, ahead of patents and profits.”
A key concern of protesters is the refusal of IDSA and CDC to acknowledge the epidemic of chronic Lyme disease and the serious threat it poses to public health.
Kenneth Liegner, M.D., who speciallizes in internal medicine, critical care, Lyme disease and related illnesses, suggests that IDSA has neglected to consider a large amount of evidence that chronic Lyme exists and is common. Liegner practices in Pawling, NY near the epicenter of the Lyme epidemic.
In a September 2010 letter to the Institute of Medicine, Liegner said:

“Honest review of the worldwide peer-reviewed scientific literature reveals an abundance of evidence for the existence of chronic Lyme disease . . . . The standard of care set by the IDSA 2006 Lyme disease guidelines is one of medical neglect of persons suffering from chronic Lyme disease.”
Another concern among activists and many physicians is the extent conflicts of interests have influenced the IDSA guidelines and Government policies to the detriment of patients.
A review of a Lyme Disease Association report: Conflicts of Interest in Lyme Disease: Laboratory Testing, Vaccination and Treatment Guidelines shows dozens of potentially serious conflicts of interests among the members of the CDC and FDA committees that set Federal policy on Lyme disease. The same report documents widespread conflicts of interests among members of the committee that produced IDSA’s guidelines for Lyme disease.
According to a report by the U.S. House of Representatives Committee on Government Reform: “The CDC’s policy of issuing annual waivers creates an environment where people do not take the conflict of interest issue as seriously as they should. This policy, in concert with sloppy monitoring of the completeness of members’ financial disclosure statements, allows for a clubby environment where ethical concerns are downplayed.”
A vital issue that affects all Lyme patients is insufficient Federal funding for research, awareness and prevention. FY2013 NIH funding for Lyme, at $20 million, is barely one percent of the $1.8 billion of NIH funding for emerging infectious diseases (Lyme is included in this category), despite the number of new cases of Lyme annually being many times greater than any other disease in that category.
Some researchers have also expressed concern about the quality of federally funded research.
Willy Burgdorfer, discoverer of the bacteria that causes Lyme, had the following comment when interviewed by the director of the award winning documentary Under Our Skin:
“The controversy in Lyme disease research is a shameful affair. And I say that, because the whole thing is politically tainted. Money goes to people who have, for the past 30 years, produced the same thing—nothing. Serology [testing bodily fluids for exposure to diseases] has to be started from scratch with people who don’t know beforehand the results of their research.”
The IDWeek protest is organized by the Mayday Project Lyme patient advocacy group. Co-founders Josh Cutler and Allison Caruana call on Lyme patients and others touched by Lyme to stand together in Philadelphia and make a difference:
“We demand an end to the conflicts of interest by researchers who create guidelines that discourage doctors from providing the best standard of care. Together, we will send a strong message that the handling of the Lyme epidemic by IDSA, CDC and FDA is appalling and shameful and that patients are joining forces to fight back and demand reform.”
About the Mayday Project
The Mayday Project is an advocacy group for Lyme disease patients, formed by volunteers who have been touched by Lyme in many ways. They aim to raise awareness about Lyme disease and related tick-borne illnesses. Mayday supporters advocate for more accurate tests, better guidelines, improved access to treatment, increased education for physicians, and more funding for research.
For more information visit The Mayday Project.

My Lyme Story: Month Nine

Dr. Jemsek and I at my 9 month appointment

All smiles with Dr. Jemsek at my 9th month appointment

It’s been a while since I’ve posted an update on my progress but I am excited to share some good news: my PICC line is out! Last Thursday, after completing my ninth month of IV antibiotic treatment I visited Dr. Jemsek. After examining me, he announced his confident diagnosis that the infection had been subdued enough to warrant the removal of the PICC line and the transition to oral antibiotics. Needless to say, I was ecstatic to hear those words!

The removal of the PICC line

The removal of the PICC line.

Even better, he told me the nurse could do it right there in the office. Initially I was terrified it would hurt but was relieved when the process turned out to be painless, although I could feel the line coming out. And the anticipation of washing my hair and taking a shower without a bulky cast protector was incredibly encouraging. Ah, life’s simple pleasures!

Best of all, a new phase of my journey would be unfolding.

Still, Dr. Jemsek was quick to remind me the oral antibiotics are required for another year to year-and-a-half because even though the infection has been severely weakened, it still needs treatment.
While I clearly see improvement, it is evident I am not yet out of the woods. I still experience some of my symptoms but not at the same intensity.
I wish I could tell you this journey is easy and quick, but unfortunately it is not. Anyone who endures can take heart that they’ve been blessed with incredible strength. Keep the faith and keep on fighting!

A Step in the Right Direction: Passage of Lyme Bill H.R. 4701

House of RepresentativesSeptember 12, 2014: The Tick-borne Disease Research Transparency and Accountability Act of 2014-H.R. 4701 is the first standalone bill addressing Lyme disease to EVER pass the House of Representatives. Let’s thank Congressmen Chris Gibson R-New York, 19th District, who is the sponsor of this bill. And let’s thank Chris along with Sean Patrick Maloney D-New York, 18th District; and Chris Smith R-New Jersey, 4th District, who made powerful and impassioned speeches in support of this crucial legislation.

You can watch their speeches here (approx. 19 minutes). Their impassioned pleas start at the 4 minute mark. It’s worth the viewing.

This is a HUGE step forward for the Lyme disease community. Now it’s on to the Senate. A bill must be passed by both the House and Senate in identical form and then be signed by the president to become law. GOD GO BEFORE THEM and PAVE THE WAY!


Lyme Victory in the US House of Representatives

September 9, 2014: Hooray! Lyme Bill HR4701 passed in the House today. Next it will go before the Senate. As soon as I know more about that, I will pass along the information.

Immediate Action Needed

September 9, 2014: Please contact your congressman to encourage him to support Lyme Bill HR 4701 (the Vector-Borne Disease Research Accountability and Transparency Act) that is before the House.

Here is the internet link to email your senator.

This bill will be very beneficial for Lyme sufferers so we must join together to ensure this is passed.