Saturday, February 11, 2012

ONTARIO HEALTH STUDY - GIVE LYME DISEASE A VOICE!

There is a not-for-profit study in progress that is funded by four organizations: the Ontario Institute for Cancer Research, Cancer Care Ontario, Public Health Ontario and the Canadian Partnership Against Cancer. The Ontario Health Study is part of the Canadian Partnership for Tomorrow Project, which is made up of five regional health studies across Canada.

About the Study (via Ontario Health Study website)
The Ontario Health Study is an exciting opportunity to learn how our lifestyle, our environment and our family history interact to affect our health over time. By participating in this online study, you can help researchers as they investigate common risk factors for diseases such as cancer, diabetes and heart disease, among others. This is your chance to help prevent disease and improve strategies for the early detection and treatment of illnesses.

https://ontariohealthstudy.ca/en/home

Wednesday, February 8, 2012

NEW Borrelia Blood Culture Test by Advanced Laboratory Services Inc.

(the following is a press release from Advanced Laboratory Services):


THE NEW LYME BORRELIA BLOOD TEST

Advanced Laboratory Services Inc. has developed a revolutionary new blood test for the detection of Borrelia spirochetes that clearly will change how Lyme Disease is diagnosed and treated. The methods involved in this culture are complex and proprietary and are still a trade secret, but many details will be outlined in upcoming publications. Here is the story of this new test:

BACKGROUND

Lyme Disease, an infectious disease caused by the spirochete Borrelia burgdorferi (Bb), is the most prevalent vector-borne disease, and fastest growing infectious disease in this country, surpassing even HIV/AIDS. The CDC estimates that in the USA there are more than 300,000 new cases each year, and there may be as many as four million currently infected. Many patients remain undiagnosed and misdiagnosed with other illnesses. In addition, Lyme has unfortunately become a somewhat controversial illness. The major reason for all of this is the poor sensitivity and specificity of currently available diagnostic tests.

The available serologic tests for Lyme are indirect tests- because they measure antibody levels and not the bacteria themselves, they do not indicate whether an infection with Borrelia is currently present. At best they can only indicate possible exposure to this organism at some previous point in time. It has been variously reported that the sensitivity of these assays is low and may miss anywhere from 30% to as many as 70% of cases of Lyme. There are many reasons for this poor sensitivity. They include Borrelia burgdorferi strain variation, immune complex formation which binds to and thus hides anti-Borrelia antibodies, immune suppression by longstanding infection, and the generally difficult trade-off with serologies between sensitivity and specificity.

Regarding specificity, once positive, these serologic tests tend to remain positive for variable periods, even years, even after treatment. Therefore they cannot be used as a marker for progress during treatment or for success of treatment. If a treated Lyme patient remains seropositive after treatment, does that reflect persistent infection, or just simply left-over antibody? If someone is rebitten by a tick and tests positive, does that positive result reflect antibodies left over from the prior infection, or a new infection from this bite? In addition, some acute viral infections may potentially give a false positive result.

What has been missing until now is a reliable, sensitive and specific direct laboratory test that can indeed inform whether the patient is currently infected. Attempts at using DNA-detection methods (polymerase chain reaction or PCR) have been disappointing. The sensitivity remains very low because of the low number of spirochetes in peripheral blood, urine and spinal fluid, low yield on tissue (biopsy) specimens, the possible presence of inhibitors in blood and tissues, and the issue of which DNA primer set or sets should be used as they tend to be strain-specific: use the wrong strain, and even a clinically obvious infection can be missed due to the notoriously large number of strain variations present and the possibility of genetic shifts common to Borrelia species. Concerns over false positives due to laboratory contamination have been raised as well. Finally, some believe that a positive PCR may not reflect persisting active infection but left over nucleic acid fragments.

How are most other infectious diseases diagnosed? Whenever cultures are available, they are generally preferred over serologic tests. For example, in diagnosing a urinary tract infection, do you test the blood for antibodies to E. coli, or do you culture the urine? The obvious answer also applies to diagnosing infection due to Borrelia burgdorferi (Bb). Cultures are more useful and give more information.

Unfortunately, Because Lyme Borrelia are symbionts, meaning that they need a living host to survive, trying to get them to thrive in vitro has been a nearly impossible task. In addition, they are noted for their very slow growth. Because of these difficulties and delayed growth, Borrelia cultures have not been available for clinical diagnostic purposes until now.

THE BREAKTHROUGH

In developing a rapid and sensitive Borrelia culture, it was necessary to investigate and fine-tune every step of the process. ALS experimented with an unimaginable number of different parameters- incubator temperature, microatmosphere, culture media (and there were many ideas that had to be tested), and even the physical makeup of the culture tubes themselves. Finally, the scientists came up with what appears to be the winning combination, and are incredibly proud to have achieved this technological breakthrough and to be able to offer Borrelia cultures of clinical and research specimens.

THE BORRELIA CULTURE:

Culturing Bb from clinical specimens using our proprietary methods has these advantages:

• By definition, culture is a direct test and if positive, indicates that an active infection was present at the time the specimen was taken

• All known strains of Borrelia burgdorferi sensu lato can be detected

• Can replace xenodiagnoses in many instances

• Culture positivity fulfills even the strict CDC surveillance case definition

• Cultures may be positive even in an infected patient who is seronegative

• A culture that is still positive post treatment indicates ongoing infection

• Advanced methods have resulted in increased yield and decreased turn-around time

• Presently we are only accepting blood for culture. Ability to culture other body fluids and tissues is being explored.

• Will become the new Gold Standard for laboratory diagnosis of Borrelia infection

METHODS:

Blood is collected from patients and transported to ALS at room temperature by overnight express. Specimens are immediately placed into culture media under proprietary conditions, and after one to two weeks it is tested by darkfield microscopy, polyclonal and monoclonal immunostaining, and by multivalent nested PCR (this nested technique is tough to do, but can detect femtomoles of DNA!). If Borrelia are seen then, a final report of a positive result is generated and sent to the practitioner. If no Borrelia are seen at this time, then the sample is placed into Long Term Culture that is looked at once, at two months, and a final report is generated then. Selected positives are sent out for DNA sequencing.

So far, of the experimental samples, nearly all the CDC+, clear cut Lyme cases have been positive, and there have not been any instances of false positives or contamination. Sequencing data have shown that these all are Borrelia burgdorferi, but with wide strain variation.

WHO SHOULD BE CULTURED?

The culture, as the Gold Standard of infectious diseases, should always be considered as the primary diagnostic test. However, the following are just some examples in which culturing is essential: suspected Lyme in a seronegative patient; in those with conflicting serologic results; Lyme patients who remain symptomatic despite prior treatment; co-infected individuals in whom the presence of Borrelia is uncertain; in the newborn who may have received maternal Lyme antibodies; symptomatic Lyme-vaccinated patients in whom a serology may not be accurate; in the immunosuppressed in whom a false negative serology is more likely; in patients with concurrent illnesses that may have given rise to a false positive serology; a patient with a prior history of Lyme who got a new tick bite .

We have found that the success of culturing Borrelia can be increased by following these simple recommendations:

• The patient should not have been exposed to any antibiotics, even those not known to affect this organism, for a minimum of four weeks prior to the blood sample being drawn. Likewise, antibacterial herbs should be held as well.

• Borrelia are more likely to be recovered from patients who are symptomatic at the time of blood sampling.

• The collection kit contains three red-top Vacutainer tubes. They must be filled fully to exclude as much oxygen as possible, and mailed out immediately at room temperature. The tubes should not be spun down.

• Blood must reach the lab within 24 hours of being drawn! The specimen must be sent out the same day it is collected using the FedEx overnight mailer provided.

• A higher yield may be seen if the blood is drawn in the early afternoon, when most infected patients feel especially ill. However, be sure that FedEx will do an afternoon pickup for you.

• Do not send any samples on Friday or Saturday as the lab is not open on weekends.

WHO MAY ORDER THIS TEST?

Based on the laws of Pennsylvania where we are located, it must be ordered by a medical practitioner defined by Pennsylvania as an MD, DO, CRNP, PA-C, and Certified Nurse Midwife. If you are an ND, and even if you may order tests in the state in which you practice, you still will need to have the test ordered by the type of practitioner on Pennsylvania’s approved list. Note that it also cannot be ordered directly by the patient. The practitioner needs to request a blood drawing kit from Advanced Labs, and once the specimen is drawn, it must be received by us within 24 hours.

ABOUT ADVANCED LABORATORY SERVICES, INC.

Advanced Laboratory Services is a CLIA and COLA certified reference lab that offers a variety of quality tests for the detail oriented clinician. ALS consists of two divisions- the clinical laboratory and the research lab.

At the clinical division we focus on both basic as well as advanced testing, including hematology, chemistry, urinalysis, serologies, immunology, cytometry, PCR and histopathology. We also are known for the creation of customized testing panels designed to meet the needs of a busy practice.

The research division supplies a pipeline of new testing services to the clinical lab after they are fully developed. Our recently released Borrelia culture is an example of this.

It is the policy of Advanced Laboratory Services to focus our efforts on perfecting and maintaining the high quality of our testing methods. Accordingly we are not planning to initiate clinical research; rather, we plan to leave that to the clinicians and make ourselves available to assist them in their endeavors.

CONTACT US!
As always, we appreciate your feedback and ideas. It is this type collaborative effort that will ensure that we continue to develop and deliver what is needed as quickly and efficiently as possible. Thank you!

501 Elmwood Avenue, Sharon Hill, PA 19079
Phone: (855) 238-4949 · Fax: (855) 238-4946
questions@advanced-lab.com
http://www.advanced-lab.com/

Sign the Petition - Make A Difference

(Via lymedisease.org - formerly CALDA) ***Please note that for Canadians simply click your country - it will not allow a Province or Territory.

"Treatment guidelines are tremendously important in determining your medical treatment options. All important treatment guidelines are listed by the National Guidelines Clearinghouse (NGC). NGC requires that guidelines be updated every 5 years.


The IDSA has not revised its guidelines for more than 5 years. Nevertheless, the NGC recently permitted them to continue listing the guidelines – without updating them – based on the IDSA’s claim that the antitrust review process fulfilled NGC review requirements.

This is wrong because:

1. The IDSA antitrust review panel was expressly NOT empowered to revise or update the guidelines;
2. The IDSA told the NGC that it had internally reviewed the guidelines in 2011 and decided they did not require change. However, this review is not listed on their application to the NGC nor is the process of any such review disclosed – as required by NGC guidelines;
3. The IDSA antitrust review process recommended over 25 changes to the guidelines—none of which have been implemented. There also was no consensus on mandatory lab testing for diagnosis; and
4. The 2006 guidelines are not current since they do not reflect new science including the Barthold mouse study and the Embers monkey study. Both studies found persistent infection, which is denied in the 2006 guidelines.

Sign the petition to urge:

The NGC to remove the guidelines as its listing rules require.

The IDSA to revise its guidelines in a transparent process that includes both patient advocacy representatives and physicians who treat chronic Lyme disease. "

http://www.lymedisease.org/petitionscript/index.php

Monday, November 21, 2011

WHOLE LIFE EXPO 2011

Come meet members of the Lyme Action Group at the Whole Life Expo this weekend, November 25th-27th.
Visit us at booth 157.  The book 'Ending Denial' will be available for purchase.

For more information about the Expo:
  http://wholelifecanada.com/

Monday, March 21, 2011

Nicole Edwards' CD Release Concert


Featuring: Ken Whiteley
Special guest: Scott Merritt
WHEN: Sunday April 17th
WHERE: Hugh’s Room
2261 Dundas West, Toronto
Open for Brunch: 1pm
CONCERT TIME: 2pm
TICKET PRICE: $15 in advance/$17 at the door
Special message from Nicole: Two for One Special for my Lyme Peers. Just mention lyme when you purchase
your ticket and you'll receive a second ticket free!

Check out Nicole’s music at:

Friday, October 15, 2010

ILADS Conference 2010

Today is the first day of the 2010 ILADS Lyme Disease Conference, being held in Jersey City, New Jersey. If you're not one of those lucky folks to be attending in person, you can tune in to the live streaming of today's presentations and panel discussions by clicking here. You can also download a complete program of the weekend's events and check out when the various speakers will be at the podium.

Just a side-note that next year's ILADS conference will be held in Canada in Toronto. It's scheduled for 28-30 October 2011. Mark it on your calendars and spread the word. This will be a great opportunity to engage our medical community with the front line of this devastating but treatable disease.

The International Lyme and Associated Diseases Society (ILADS) is a nonprofit, international, multi-disciplinary medical society, dedicated to the diagnosis and appropriate treatment of Lyme and its associated diseases. ILADS promotes understanding of Lyme and its associated diseases through research and education and strongly supports physicians and other health care professionals dedicated to advancing the standard of care for Lyme and its associated diseases.

Tuesday, August 17, 2010

September Extravaganza

*****THE EXCITEMENT BEGINS ON SUNDAY!*****
Please be advised that there is a large book fair
happening around the Queen's Park area on Sunday.
For those driving to the Theatre screening of the film,
this event may affect road access around Queen's Park
Crescent, and immediately north thereof.
(don't forget to dress warmly!)

If you live within driving distance of the Ontario's capital city, September is going to feel a lot like Lyme disease awareness month all over again. There are two back-to-back exciting events planned in the hope that some will be able to take part in both.

Screening of Under Our Skin
The first is a theatrical screening of an award-winning Lyme documentary on Sunday, September 26th. A gripping tale of microbes, medicine & money, Under Our Skin exposes the hidden story of Lyme disease, one of the most controversial and fastest growing epidemics of our time. Each year, thousands go undiagnosed or misdiagnosed, often told that their symptoms are "all in their head." The film follows the stories of patients and physicians fighting for their lives and livelihoods, bringing into focus a haunting picture of the health care system and a medical establishment all too willing to put profits ahead of patients.
Under Our Skin
Isabel Bader Theatre
Sunday September 26th
1:00pm matinée & 7:00pm evening screenings
3-hour event includes discussion panel after the film
Brochures and other info available before the event
Doors open 1 hour before scheduled time
There will be a matinée and evening showing, each followed by a VIP Panel discussion (including film director Andy Abrahams Wilson!). Proceeds from this event will support CanLyme's goal of establishing Lyme research and treatment facilities in Canada. A downloadable brochure (4 per 8.5x11" page) is available if you would like to invite friends, neighbours, doctors, etc. Complete event details and online or phone ticket sales can be accessed via CanLyme.com. Tickets will also be sold at the door, subject to availability. We are looking for volunteers to help distribute posters around Toronto, as well as assist on the day of the event. If you are able to volunteer your time, please contact Rob for more details.

Wall of Hope 2010
The second big event to tell you about is the annual Wall of Hope demonstration. Events are again being planned in several cities across the country this year. Our Toronto event will take place on Monday, September 27th on the south lawn of Queen's Park, right in front of the Ontario Legislature. The event will officially run from 12-noon until 1:00pm -- please come early and bring along a packed lunch if you would like to join us for a picnic on the beautiful Legislature grounds following the festivities. We are honoured this year to welcome CanLyme president Jim Wilson to our event, in addition to MPP France Gelinas and lawyer Paul Haefling. Please make sure your MPP is aware and invite them to come and learn more about Lyme issues facing patients throughout Canada. Please put your creative juices to work and bring along some eye-catching posters.
Wall of Hope
Queen's Park (south lawn)
Monday September 27th
12 noon until 1:00 pm
Picnic lunch to follow event
The green arrow (see map below) marks our meeting place on the Legislature grounds, right outside the grand main entranceway. There is no parking available immediately on the grounds. Limited paid parking is available on the University grounds on the west side of Queen's Park as well as area municipal lots. The TTC Queen's Park subway stop is conveniently located steps from where we will be meeting.

Lyme Action is pleased to be handing out complimentary T-shirts to attendees -- come early and get one while supplies last! This is our thank-you to you for your continued support. Thank you!


View Larger Map

Remember, both of these September events are scent-free.

So September will be a great time to be in Toronto. Consider making a weekend of it and take in both events. Please help us spread the word. Let's keep the momentum building and keep raising awareness about Lyme issues. There has been some good progress this year, but there is so much still to do. See you in September! Drop Rob an email if you have any questions.