Lyme Disease Coalition Inc.
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  • News
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  • Education
    • Videos, Books, & Materials
  • Prevention
    • Tick Off! Tick aid Kit
    • Prevention tips
    • Repellents, Clothing & Yard Treatments >
      • BugBeWear
    • Sawyer Products
  • Corporate Sponsors
  • Research
    • Studies Research & Testing >
      • Columbia Lyme Treatment Study
      • Borrelia Test Evaluation
  • Support
    • Patient Care Providers
    • Lyme Scout
    • Other Site and Group Links >
      • Links to support groups
      • Links to other Resources >
        • Lyme Aid 4 Kids
        • Lyme Disease Association LDA
        • Lyme Disease Org.
        • Under Our Skin
  • Treatments
    • Testing for Humans
    • National Guideline Clearinghouse Treatment Guidelines
    • Treatments by qualified Professionals
    • What is Lyme
  • Tick Testing
  • Lyme legisation
  • About us
    • About LDC
    • Our Support Committees
  • Find us on FaceBook!
  • Patient Blog
  • Link Page
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10/23/2017 Comments

NBC Channel 5 starts a 5 part series "The Lyme Wars"

NBC is starting a 5-part series called The Lyme Wars on  Monday, 10/23 at 6:30 PM on Channel 5.  It is an I-Team investigation about the way so many doctors could not or would not deal with Lyme patients and refused to recognize it. https://www.nbcnewyork.com/news/local/Lyme-Wars-450077123.html ABOUT 'THE LYME WARS' Warring medical opinions. Funding controversy. Tens of thousands diagnosed with Lyme disease just this summer. The I-Team investigates why the medical and government response to this public health crisis is still in disarray -- as patients pay the price. Tune in for "The Lyme Wars," a special five-part series beginning on Monday, Oct. 23 on News 4 New York.

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10/23/2017 Comments

Ocular Bartonellosis - sight-threatening manifestations of tick-borne disease

*Summary*
Bartonella infections continue to be a burden worldwide and 
epidemiologic features may guide preventive measures in high-risk 
regions and populations. An increased awareness of diverse posterior 
segment manifestations will lead to an early diagnosis of ocular 
bartonellosis. Laboratory diagnostic methods continue to evolve and may 
be applied to the investigation of ocular fluids for a definitive 
diagnosis of ocular bartonellosis. Well designed clinical trials are 
required to establish the optimum treatment of especially 
sight-threatening manifestations.

https://doi.org/10.1097/ICU.0000000000000419

Abstract

*Purpose of review*
The eye is commonly affected in disseminated cat scratch disease (CSD) 
caused by Bartonella species. This article reviews recently published 
data on epidemiology of CSD, clinical features of ocular involvement, 
diagnosis and treatment.

*Recent findings*
The annual incidence of CSD has been estimated as 4.7 per 100 000 in the 
United States. It occurs predominantly in the southern states, with a 
peak in January, and disproportionately affects children. Retinal 
infiltrates, neuroretinitis and branch retinal artery occlusions have 
been reported as common manifestations of ocular bartonellosis in recent 
series. The use of different antigens for serodiagnosis and new 
real-time PCR assays for molecular diagnosis have been described. 
Despite lack of a standard treatment, good visual outcomes were 
generally reported in patients with ocular bartonellosis.

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10/23/2017 Comments

PRESS RELEASE - IGeneX-Introduces-New-Diagnostic-Tests-Lyme-Disease

Press Release 

October 16, 2017 
Source: http://www.businesswire.com/news/home/20171016005904/en/IGeneX-Introduces-New-Diagnostic-Tests-Lyme-Disease 
or http://tinyurl.com/y9d9hzxd 


Palo Alto, CA -- IGeneX Inc., a CLIA and New York-approved Reference Laboratory, specializing in testing for tick-borne diseases, is pleased to announce the launch of three new tests that are more inclusive and specific for aiding in diagnosis of Borreliosis (Lyme Disease and Tick-Borne Relapsing Fever, Borreliosis). 
Lyme ImmunoBlot IgM and IgG TBRF ImmunoBlot IgM and IgG Lyme IGX Spot https://www.igenex.com/testing/diagnostic-tests-for-borrelliosis/lyme-igxspot-test/ 
Borreliosis is caused by two groups of Borrelia, B. burgdorferi group and the Tick-Borne Relapsing Fever (TBRF) Borrelia group. Until recently, it was believed that B. burgdorferi group was the only group that caused Lyme-like symptoms. However, we now know that TBRF Borrelia also causes Lyme-like symptoms. Therefore IGeneX developed two sets of Immunoblots, Lyme ImmunoBlot IgM and IgG and TBRF ImmunoBlot IgM and IgG. 

Many patients with Lyme-like symptoms are misdiagnosed because: (1) The current serological tests cannot detect antibodies to all the different strains of B. burgdorferi (2) For TBRF Borrelia, only two serological tests, an IFA test for B. hermsii and a serological test that detects only B. miyamotoi GlpQ protein, are available. In addition, with the increase in tick populations, Borreliosis is on the rise. Thus there is an urgent need for better diagnostic tests for Borreliosis. 

Because symptoms of Lyme and Tick-Borne Relapsing Fever are often similar, a more comprehensive battery of tests is critical for proper diagnosis. 

“IGeneX’s new Lyme ImmunoBlot and the TBRF ImmunoBlot tests are the first, most inclusive and specific serological tests for Lyme disease and TBRF,” said Dr. Jyotsna Shah, President and CEO of IGeneX. “These tests, when combined with Lyme IgX spot and PCR, cover the full spectrum of the disease." 

Lyme ImmunoBlots IgM and IgG 

Although IGeneX Lyme Western blot prepared from Borrelia burgdorferi strains B31 and 297 is one of the most sensitive tests, it does not detect antibodies to all the B. burgdorferi sensu lato antigens. To develop all inclusive Western blots would be very expensive and impractical. Therefore, IGeneX has developed a Lyme ImmunoBlot that is very specific and inclusive of most species of B. burgdorferi sensu lato for clinical use with the following advantages over a Western blot: 
The specificity of the ImmunoBlot is 98.0% for IgM and 98.7% for IgG. This is higher than the traditional Western Blot. The 31kDa Epitope confirmation test will not be required on patient samples tested by Lyme ImmunoBlots. The sensitivity of the Lyme Immunoblot is 90.9% with well-defined samples. The ImmunoBlot has better sensitivity compared tothe current Western Blot, because it is designed to detect antibodies to major B. burgdorferi sensu lato specific antigens from North America and European strains as listed below: 
B. burgdorferi B31 B. burgdorferi 297 B. californiensis B. mayonii B. afzelii B. garinii B. spielmanii B. valaisiana TBRF ImmunoBlots IgM and IgG 

The TBRF ImmunoBlot is designed to detect antibodies to specific antigens of TBRF Borrelia in human serum. It detects antibodies to B. hermsii, B. miyamotoi, B. turicatae and B. coriaceae. Based on in-house studies these blots detect antibodies to North American, European and Australian strains of TBRF Borrelia in patient serum samples. The specificity of the TBRF ImmunoBlot is 94% and 98% for IgM and IgG respectively. 

Lyme IGX Spot 

The Lyme IGXSpot is an Enzyme-Linked ImmunoSpot (ELISPOT) assay that detects human T cells reactive to B. burgdorferi specific antigens in vitro. ELISPOT is a widely used method for detecting and monitoring cellular immune responses to specific antigens. 

The Lyme IGX Spot test: 
Detects specific T-cell responses soon after B. burgdorferi infection, when antibodies to the organisms are not detectable or late in the disease, when the levels of antibodies are very low. When combined with Lyme ImmunoBlot tests, information on the full spectrum of patient’s immune response to infection and stage of disease is obtained. Is especially useful for seronegative patients. 
IGeneX Inc. 
https://www.igenex.com/ https://www.igenex.com/ 
795 San Antonio Rd, Palo Alto, CA 94303

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7/19/2017 Comments

LDC Surveillance Risk & Prevention Project

Lyme Disease Coalition, Inc. is working on our Surveillance project to be used in conjunction with our prevention program.
In effort to help notify the community of human risk, the Coalition is going to be conducting tick drags in Susquehanna County. Training was received at an earlier meeting held in Apolacon Twp. with Amanda Roome of Sunny Broom.
We will utilize the information obtained from these drags to locate areas of high infestation and publish the results both on the website, and social media as well as local media, and other organizations who are interested. Below is an outline of the project we intend to perform and report on which utilizes part of the program BU has been using:

​Lyme Surveillance Project Teams

Field Tick Dragging Team: The dragging team is responsible for tick and ecological data collection. They are out in the field (following protocol) dragging corduroy cloths over low lying vegetation on and around walkways in public parks and on campus to collect ticks. Questing (in search of a blood meal) ticks will grab onto the cloth where upon they are transferred into vials filled with 70% ethanol and brought to the lab where they are identified by species (typically the deer tick, Ixodes scapularis), life cycle stage (larvae, nymph or adult) and sex (only adults).
Field Behavioral Team: The behavioral team assesses the degree of risk for coming in contact with potentially infected ticks. Both clothing and behavioral risk are noted on walkways. Observations are conducted in 30 minute segments where you note the type of clothing and activities of individual, as well as the demographic patterns. This team is critical in order to assess human risk of infection.
Modeling Team: The modeling team is responsible for taking the data generated by each team and creating algorithms to develop a predictive model of risk for human populations. This team also administers a survey assessing knowledge of and how people are affected by Lyme disease in order to help validate the risk model developed. Mathematical and statistical training and modeling skills are very useful for this team, but not required.


As part of our prevention program, we will give out FREE “Tick-Off” Tick kits to residents who show infestation of tick activity.


***NOTE
”They usually measure human risk in density of infected nymphs. 0.3 infected nymphs per 1000 square meters is considered to be high human risk”
With time sensitive data of infection being mailed out, we will use the number of ticks per sq. as indication of infestation for gifting free Tick Aid Kits.
Literature will be left with any others to be aware and share with family and friends.
If you feel you would like to be a part of these teams, or donate to our organization to help pay for costs incurred to fulfill our goals, please Volunteer Here     Donate Here.
or send us an email to:
 ldc@lymediseasecoalition.org and let us know how you'd like to help.
​
Comments

7/13/2017 Comments

Coalition Accomplishments / Activities for 2017

2017:
Acquired the support of a counselor for those who may not be able to leave their homes due to the physical and mental issues created by Lyme disease.
Created a partnership with the Suicide Awareness Program (Margaret Moran)
Networked with PALyme
LDA
TickEncounter, to name a few.
Held meetings in new locations:
Apolacon
New Milford
Hallstead areas
Initiated the March event at the Elk Lake School
Received our recognition from Susquehanna County
Traveled to Harrisburg to support the passing of HB 174 which would help get medical needs addressed.
Attended: Meetings of;
The Montrose Support Group
The SCTBDTF
Susquehanna County Commissioners
Open house hosted by Representative Jonathan Fritz to speak to him about supporting legislation on Lyme disease
The third Lyme disease conference held at Suny Broom in NY,
Superhero Event in Montrose, where we handed out our first “Tick Off” tick kit in a raffle basket.
4th of July Parade in Montrose Walk / Float, where we also had a table to give out information, answer question, and hold our third drawing for a free Tick Aid Kit to help prevent tick-borne diseases. And also raised funds from donations, and tick kit sponsorships.

Arranged:
Tick Surveillance Training Seminar hosted at the Apolacon Twp. Building, where we gave out our second “Tick Off” tick kit
Yoga classes for Lyme patients that was well received with comments of “Thank you for arranging something to help get us motivated to move, it was exactly what was needed.”
Developed educational materials, brochures, bookmarks, and slideshow presentations we are eager to get into the public hands, as well as begin showing our slide show.
We have tried to accommodate the many needs of Lyme patients along with providing valuable prevention education, including several articles in the local newspapers and radio station.
Currently:
Considering attending a Health Fair Opportunity Wednesday September 27th (noon-6pm) and Thursday September 28th (6am-noon) in Towanda. (although not in Susquehanna County, it would cover some residents of our county that work there, and possibly engage other county areas to start hosting Lyme & Tick-Borne disease meetings.
Working on creating our tick drags so we can start performing surveillance around the county to provide us with data in evaluation the severity of risk and in what locations are worst. These ticks will be sent in for basic testing, and our data published not only on our website, social media, but also sent to the CDC, and other organizations, and schools interested in working with us, as well as State and Local officials. Upon finding epidemic areas, we will give out FREE “Tick Off” tick aid kits to help those residents quickly start prevention techniques.
Creating poster boards of our slide show presentation so that we might present at camps and other outdoor areas too bright for a slideshow.
Awaiting our CPA to finalize our 501c3 status.
We will need volunteers and funding for these and many of the other tasks we have implemented, and plan to develop. ​
Comments

7/5/2017 Comments

Lyme Disease Awareness @ the 4th of July Parade in Montrose PA.

This years parade efforts came with less people walking for Lyme Disease Awareness as some were too sick. The Lyme Disease Coalition, Inc. organization was encouraged to press on, and with the help of another great family managed to pull it off. LDC. Inc. also had a table set up to hand out information while folks waited for the parade to get through town. At 1:00 pm one of the children drew names until a winner in attendance was drawn, for the LDC's "Tick Off" tick kit. The kits are filled with Tick ID, instructions how to remove ticks, supplies to clean the area and hands, as well as supplies and information to send ticks in for testing. Clothing treatment and skin repellent donated by "Sawyer" to help aid the prevention of Lyme and other tick-borne diseases also was part of the giveaway drawing.  Others gave $20 to sponsor another tick kit, some just made a contribution, asked questions and took information. 

​Along the parade route while literature was handed out, many near them also reached out and asked if they too might have the information. Punch ball balloons marked "Punch out Lyme" were a huge hit with the kids in place of candy which Lyme patients can't have do to the sugar. 
Lyme Disease Coalition, Inc. considers this to be a success considering the numbers of people who asked for information. Over 1500 pieces of literature is estimated to have been handed out, and many ideas for next years parade, and this years events were spawn. 

The Coalition is working on making the tick drags similar to the one sampled in the parade to perform drags around the county, which they were trained in at a recent event held at the Apolacon Township building. Once they are completed an announcement will be made as to where the first will be held. Results will be posted on the web site, and shared to other organizations with interest.

Calendar of Events is also on the web site, as well as posted on the Facebook page, so be sure to subscribe to at least one, or send an email to ldc@lymediseasecoalition.org to be put on the event notice email list. 

Special thanks to Well Kneaded Massage, and Castrogiovanni Agency - Nationwide Insurance for the support. 
Other business sponsors which helped to get the Coalition Programs started are: 
SM Smith & Company Inc. - Erie Insurance and ​Topp Business Solutions 
Venue hosting and class or speaker sponsors: Apolacon Twp., Evans Chiropractic Center- Gerald D. Evans DC, New Milford Rifle and Pistol Club, Canawacta Rod & Gun Club, Inc., Binghamton University's Amanda Roome, Judy Robilotti of Angel Food, Yvette Bugler - Yoga instructor, DeLores A. Davis MSW LSW, and Kids Consignments.

​


Comments

7/4/2017 Comments

4th Of July Parade Celebration~ Opportunity for a free Tick Off tick kit!

Tickets for the drawing of our "Tick Off" tick kit are printed!!
There are only 200 and will be handed out during the parade, and a few at our table which will be in front of Kids Consignments (Church Street side), Next to Relay for Life! What a combo right?
Karen will be tending the table for us so be sure to stop and say hi, ask for brochures and sign up for the FREE drawing @ 1:00! 
Did you read it right? Did it say FREE? YES!!
If you miss out at the table, be sure to run out and grab one during the parade~ show your support and jump in with us too!! 
This FREE drawing is sponsored in part by YOUR CONTRIBUTIONS, and "SAWYER", we're "Working Together to Combat Lyme and Related Diseases", and we're PROUD to have such a big name sponsor our pilot program in prevention. Be sure to get a picture standing by our table and show the Poster and product, then post or send to "Sawyer" and let them know you appreciate their sponsorship!
(Be sure to send us a copy too!) 
Have a safe outdoor holiday, and help prevent the spread of Lyme and other tick-borne diseases. Check for ticks several times while outdoors especially when in grassy areas, but be aware they will even crawl on chairs and porches, so don't let your guard down. Use your favorite prevention products,and remember Permethrin is NOT for skin.
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6/27/2017 Comments

Tick Aid Kits your First Aid for Prevention

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We are pleased to announce the rollout of another phase of our business plan.
One aspect of our prevention program was to get tick kits into the hands of people to help in prevention efforts. It's taken some time since conception due to funding, but with your support we assembled and handed out our first two FREE kits at recent events. 
We would like to encourage everyone to create their own kits but intend to hand out even more at upcoming events. Currently we have supplies for a dozen kits which are handed out at no cost raffle style. Meaning you just show up and drop your name in the bag or basket. At the end of the evening we draw a name from that container to choose the winner. Yes you must be present to win. 
Our coalition wants everyone to take precautions against Lyme and associated diseases, so we encourage you to make your own kit and have attached a photo of what we have included. These kits are done with the products found in studies to provide the highest protection available. You may replace repellants with oils and other deet free products of your choosing. 
Studies have been posted within our facebook as well as here within the Prevention tips tab to help you decide what products are best for you and your family. 
Within our kits you may opt for deet free replacement for skin repellant, as well as picaridin based products but due to the studies we have found these are less effective some up to 60% less effective. All have been found to be safe if used as mfg. instructions show, and you bathe or shower upon returning inside. 
Our kits include our brochure with information on what we do as well as helpful links to other sites. The kits also include our own bookmark which has tick identification, instructions on how to remove ticks, prevention tips, symptoms to watch for, and other information. They also include pointed tweezers, antiseptic cleanser, and a small zip lock baggie to contain the tick for disposal or to send in for testing. Information for free tick testing as well as the supplies (less your information, and postage) are also included.
If you'd like to support our efforts, and to get these into the hands of others and make a donation, please send checks to Lyme Disease Coalition, Inc. % Karen Mitchell 1917 Graham Road, Montrose Pa 18801.
You may also use the links on our website or facebook page LymeDiseaseCoalitionInc but we prefer checks or cash due to processing costs. Receipts are supplied for your donations.
Attached is a poster with our information and contents we use for our kits, please feel free to copy and make up your own as the important thing is to get everyone using prevention techniques. 
Tick season is now all year, be prepared and have your kit ready! 
​



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5/16/2017 Comments

First Lyme Disease Coalition Fundraiser

The LDC., Inc will be hosting it's first fundraiser May 26th at Wisecrackers Comedy Club, 1280 Highway 315 Wilkes-Barre, PA. 18702
Laugh for Lyme is a Comedy Fundraiser just small enough for the Coalition to get it's feet wet.
Tickets can be purchased online here:
https://www.facebook.com/commerce/products/1645390682168569/
or by calling 570-500-LYME (5863)
Complete details:
"LAUGH for LYME"
A COMEDY FUNDRAISER
With Steve Shaffer,Eric Tartaglione, and Scott Bruce.
Doors open at 8 with General admission Seating
$20 per ticket.
You MUST BE 21 to Attend
Contact 570-500-LYME (5963) for Tickets or to Donate Raffle Baskets
or on line
https://www.facebook.com/commerce/products/1645390682168569/
Profits to benefit the Lyme Disease Coalition, Inc.
for Education, Prevention, Research, and Support.
Come out & Bring your out of town family or friends!
~Enjoy a night of Laughter & Support a worthy cause~

***YOU MUST HAVE TICKETS PRIOR TO THE SHOW OR IT WILL NOT SUPPORT LYME!****

No ticket sales can take place on the property!! All tickets not sold MUST be returned prior to the show so be sure to get yours ahead of time!!
(also these tickets are allowing 3 months to use, so if you can't make this night, purchase your tickets and attend another show and your $$ will still support LYME!)

Flyers have been added in an update and we appreciate it if you can print and distribute them. 
Thank you for your support and helping us!
​
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Comments

5/13/2017 Comments

​Lyme Disease Coalition, Inc. will be hosting an educational Tick Training Seminar on June 10th at the Apolacon Towhnship Building 390 Bowbridge Road (Little Meadows in google maps).



Amanda B. Roome, with BU. will be Training us on how to do tick drags for useable data. With this information we hope to conduct tick collections around the county in efforts to find the area’s prevalence for risk of Lyme and associated diseases. Information gathered will allow the LDC to coordinate prevention methods in the areas of highest risk first. 
This is one step in a process; the LDC hopes to add tick testing once we have funding and an established relationship with a lab which will further the risk assessment.
Mandy Roome is a senior PhD student at Binghamton University under the direction of Ralph Garruto. Her interests are infectious and chronic diseases. She has performed extensive field and laboratory research on Lyme disease in the six county region of the Upper Susquehanna River Basin since 2012, follow up research on transmission of chronic wasting disease to humans since 2013, and chronic disease burdens in Melanesian populations in the island nation of Vanuatu since 2013.
Our Training session will include a tutorial inside, followed by hands on demonstration outside pending weather conditions.
1.    The first aspect is demographic and behavioral training. This will allow you to understand the general area in which you are working. You will have people stand along pathways to record what they see, i.e. how many people they see, what these people are wearing, trash cans, what’s inside of trash cans, etc. By having this information, you will be able to better understand the average risk that people are at within these areas Are there high levels of skin exposure (easier for ticks to bite)? Are people typically walking by (less of a risk) or sitting on grass, leaves, etc. (more of a risk)?
2.    The second aspect is in tick collection. This involves going parallel to walkways (where you also do these demographic and behavioral observations) with a corduroy drag to collect ticks that are actively seeking a meal. You will measure your walkway distances and record the number of ticks that you collect so you’re able to accurately assess the tick density along that pathway or in any area you choose to evaluate.
3.    The third aspect will be identifying life cycle stage and sex of deer ticks. We can teach you how to identify larvae, nymphs, adult males and adult females. Larvae are not seen as a risk to humans, as they cannot carry B. burgdorferi, the infectious agent of Lyme disease. Nymphs are seen as the most dangerous stages to humans as they are small, about the size of a poppy seed, and adults are seen as less dangerous (though can still cause infection) because they are larger, about the size of a sesame seed, and typically removed by people before the infection can be transmitted.
4. The demonstration will be open to anyone wanting to participate, however you NEED to be dressed appropriately.
Please visit http://lymediseasecoalition.org and click on the events tab, open the event on the 10th, and you will find attached a document to use as a guide to prepare your clothing. Or send an e-mail to ldc@lymediseasecoalition.org and ask for a copy to be sent to you.  
Please let me know if you plan to participate in the hands on demonstration so Mandy can be prepared with enough supplies to do so. Use the link supplied on the website, or call 570-500-LYME (5963) and leave a message with the number of attendees you will have. 
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    Author

    Colleen Schake
    Patient-​Living with Lyme
    Lyme Disease Coalition, Inc. - Founder
    Lyme Scout - Founder

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