The day was definitely a wonderful and fulfilling experience, as I learned more about the problems surrounding treatment of Lyme disease, grassroots advocacy, the Delegates, and about Lyme disease itself. Constituents voiced their opinion throughout Virginia, especially in the Northern Virginia area, overwhelmingly in favor of H.B. 512! Many Delegates heard their constituent’s voices. A few Delegates remained unaware of the bill until it was brought to their attention, but often expressed sympathy and understanding once informed of the provisions and of the purpose. The opposition was campaigning at the same time. Despite strong support from many members of the full committee, we were unable to campaign to about half of the seven subcommittee members. Mostly, though, it was success – by the end of the day the halls were alive with talk about H.B. 512!! Check back shortly for a recap on the subcommittee meeting.

By: Damien Sanchez

Starting Last Night the Capital Home and Garden Show was open and ready for business at the Dulles Expo Center.  Mosquito Squad”s of Northern Virginia and Greater DC locations are at the booth and ready to answer questions and say hi to current customers.  The shows location and hours are:     Dulles Expo Center 4368 Chantilly Shopping Center Chantilly, VA 20153.  Today’s hours are 10am-9pm, Saturday 10am-9pm, Sunday 10am to 6pm.

We hope to see you there!  We also have several tickets were giving away so if you interested just reply to this post and we will be in touch to give you the tickets.  Since we have a limited number of free tickets though, they will be distributed on a first come basis.  See you at the show!

Damien

It’s been a whirlwind week for me, on a sad note I regret to report that my Grandmother died at the age of 86.  It was a little unexpected for me, I had been planning to visit her in the near future but by providence it did not come to pass.  I am grateful to say that even with the sadness of the occasion my family was able to come together and embrace each other  and I was glad to have had the time with them that I did.

Having traveled with my family to California and back it seems that everytime I get in a plane for the cross country trip I get sick, Im not sure if its my sisters kids or germs on the plane but on the last trip my son and I got swine flu and now I dont know what I have, but  in spite of my being sick, I was able to head down to Richmond right after my flight arrived at IAD to attend the Mosquito Squad Annual Meeting.

We just completed the annual meeting for Mosquito Squad and the excitement I now have for the 2010 season is exhilarating.  The Franchise system now has close to 50 locations and in two years we expect to have close to 200 locations, I believe this is very doable.  We covered numerous topics in the 3 days we had together, having been a part of Mosquito Squad for 3 years now I’m excited to see how the system has grown and developed.  For 2010 5 new franchises will be operating in the metro area,we have franchises in: Montgomery County, Fairfax County and in parts of Howard County, Anne Arundal County, Loudon County and Prince William County.    I’m thankful for the Washington Post’s article  last year for featuring us in the Home section, it seems to have brought some attention to the  Mosquito Squad Franchises.

While at the meeting Jennifer was able to accept an award for us, we were “the most forward thinking”  we were excited to receive it and were grateful for the recognition of our efforts to help improve the franchise system.  So thank you Chris Grandpre, Scott Zide, Boyd Honeycut and the rest of the Outdoor Living Brands team for the recognition.

We are looking forward to the upcoming year and we hope to have many more upcoming blog posts for you.

Damien

In order to effectively lobby for House Bill 512 (HB 512), or to influence any other bill that you support, it is imperative to understand the process a bill goes through to become a law and to know what opportunities you have to influence the bill and the process. For the sake of simplicity, I will describe the process that HB 512 went through, and thus will be tracking a bill originating in the Virginia House of Delegates.

Filing and Introduction

Before the beginning of the legislative session, delegates can file as many pieces of legislation as they desire, but after session begins, each delegate can file only up to five additional proposals. A few months ago, a constituent suffering from Lyme disease approached Delegate Rust with a bill proposal that would protect doctors from disciplinary action solely for treating Lyme disease patients with antibiotics for more than four weeks.

Within the medical community, a set of non-mandatory guidelines that call for treating Lyme disease with less than four weeks of antibiotics are promoted. However, doctors throughout the country face disciplinary action solely for prescribing antibiotics for more than four weeks to Lyme disease patients. While many of these doctors are later cleared of the charges, the costs incurred to fight against the charges, as well as the humiliation, adds up quickly. This has spread fear and controversy throughout the medical community, turning Lyme disease into a stigmatized disease that many doctors are uncomfortable treating.

After the proposal was brought to light, Delegate Rust, his constituent, and National Capital Lyme and Tick-Borne Disease Association worked closely together to develop HB 512 and to introduce it. HB 512 does not mandate a standard of care, nor does it prevent disciplinary action or investigations. Essentially HB 512 promotes trust in a doctor’s decision that is based on clinical knowledge and the patient’s symptoms without fear of reprisal.

Subcommittee

Once the bill is introduced and has a patron (usually the Delegate that drafted the bill), the House Speaker assigns the bill to the appropriate committee. HB 512 was assigned to the Health, Welfare, and Institutions Committee, where the committee chairman then assigned the bill to a subcommittee for review. The subcommittee, comprised of a smaller portion of the full committee, reviews the bill and can amend the bill before either voting to move the bill forward for a full committee hearing, tabling it (which means it does not advance to the full committee, but that it does not die); or killing the bill. In the case of HB 512, the subcommittee tabled the bill until the 2011 session.

Committee and House Floor

If the subcommittee motions for the bill to move forward, then the full committee will meet, amend the bill if necessary, and vote on whether to report, table, or kill the bill. If the vote is to report the bill, it will be heard by the full House, where another opportunity for amending the bill occurs. At this point, the bill must be supported by a full majority of the Delegates or else it dies.
Crossover
Bills that pass through the House, are then sent to the Senate on a day known as Crossover, where the process more or less repeats itself in the Senate. If the bill passes in the Senate, but has been amended since it left the House, the bill returns to the House for approval. If the bill passes and is not amended, it goes to the Governor for approval.

The Governor

The Governor can sign the bill, thus making it law; amend it; or veto the bill. If the Governor chooses to amend the legislation, then the bill returns to the General Assembly, which can either accept or reject the Governor’s changes. A vetoed bill will return to the General Assembly if the bill passed by more than a two-thirds margin in each chamber and the General Assembly may then override the Governor’s veto.

A Bill is Now Law

That is how a bill in Virginia becomes a law. As stated previously, it is imperative to understand this process in order to effectively advocate for a cause or a bill. Although I used Virginia’s process as an example, most states have a similar process. If you are unsure of the process in your state, please check your state legislature’s website.

Be sure to check back soon for a for a recap on my personal experience in lobbying with NatCapLyme and other proponents of HB 512, as well as for a recap on the subcommittee meeting and what the outcome really means!

If you would like more information on the legislative process in Virginia, please visit either Virginia’s State Legislature website or Democracy for Virginia.

With all of the constituent support, the bill was not killed.  Instead, the subcommittee motioned and seconded for the bill to be moved forward to the 2011 session.  While this is not a complete win, this does give us another year to continue our efforts in awareness, education, and grassroots campaigning.  Any suggestions that you may have to help us in our endeavor over the next year to raise awareness, increase education, and participate in grassroots campaigning is greatly welcome!

Please check back in the following weeks for posts regarding what went into this bill, including the creation, lobbying, and subcommittee meeting.  If we all continue to join together, we can get this bill passed in the 2011 session and allow our doctors to treat Lyme disease with antibiotics for more than four weeks without fear of disciplinary action!

If you have not contacted your delegate – please do so right away! Delegate Rust’s Bill H.B. 512 is an incredibly important piece of legislation that would allow physician’s to treat Lyme disease patients with antibiotics for more than four weeks without the fear of disciplinary action. The committee meeting is on Monday, so if the bill is not passed on Monday, it dies.

Please help us to ensure that Lyme disease patients receive the adequate treatment that they need, without their doctor risking disciplinary action! National Capital Lyme and Tick-Borne Disease Association has been working closely with Delegate Rust on this bill. At NatCapLyme.org you can read the actual bill, find your local delegate’s contact information, and even email them right then there. NatCapLyme provides a sample form letter for you to copy and paste to quickly let your delegate know where you stand, or you can create your own message.  The important thing is for you to let your delegate know that you support the bill and for your delegate to sign on as a co-sponsor!

So if you have not already done so, please contact your local delegate to let them know that you strongly support the bill, are counting on his or her support, and are asking him or her to sign-on to the bill as a co-sponsor. This is incredibly important!

For those of you who have already contacted your representatives, Thank You!

If we all work together, we can improve the treatment for Lyme disease!

Please see our original post, Lyme Legislation, for more information or visit the National Capital Lyme and Tick-Borne Disease Association website.

“I am now part of a club of people with a stigmatized disease that many doctors refuse to touch.”  Rebecca Wells, author of the Divine Secrets of the Ya-Ya Sisterhood and Lyme disease patient 

Lyme disease is the fastest growing infectious disease in the United States.  As evidenced by Sharon’s story below and so many other stories like hers, education and raising awareness about the disease, symptoms, diagnosis, treatment, and prevention is more important than ever.  Ensuring that doctors are Lyme-literate is especially important so the disease may be caught in the early stages, before the ignorance and stigmatization of Lyme disease has the chance to destroy the patient’s marriage, career, family, health, and even their life.  Most doctors are uneducated about and uncomfortable with diagnosing and treating Lyme disease and can actually risk facing disciplinary action for treating Lyme disease patients with an efficient protocol, which requires antibiotics for longer than four weeks.  

Amy Tan, Rebecca Wells, and Jimmy Wales are all well-known Lyme disease patients, but our friend, Sharon Rainey, has also been diagnosed with Lyme disease.  By sharing a synopsis of her struggle with Lyme below, we sincerely hope that you learn from it, understand how important awareness is, and hopefully choose to help the quest to raise awareness for Lyme disease.   

SHARON’S STORY:

Sharon Rainey, founder of myNeighborsNetwork, is a successful and intelligent businesswoman with a supportive and loving family.  After an incredibly long journey to have the extensive list of symptoms correctly identified, Sharon was diagnosed with Bartonella, a co-infection of Lyme disease and Babesia, tick-borne illnesses by a Lyme Literate Medical Doctor (LLMD) in September of 2009. 

EXCRUCIATINGLY PAINFUL AND BIZARRE SYMPTOMS

In June of 1981, Sharon was a bright and happy high school senior when viral meningitis attacked.  By October, she was sleeping 23 hours a day and had to drop out of college for a semester.  The doctors had no definitive diagnosis, but no one suspected a tick-borne disease.   

For the following ten years, the disease remained relatively quiet, only surfacing through bizarre but seemingly unconnected symptoms: sun sensitivity, dental problems, recurrent sinus infections, and migraines. After the birth of her son, more painful and debilitating symptoms developed including joint pain, gallbladder problems, H.Pylori infection, hypothyroidism, elevated heart rate, daytime sleepiness, numbness in her hands and feet, occasional blurred vision, and vitamin deficiencies.  They would come and go, enough to be significantly irritating, but not urgent.  In Spring 2009, a clumsy fall caused tasks as simple as getting out of bed in the morning, something that most of us take for granted, to become excruciatingly painful.   

WHAT THE DOCTORS MISSED

Between 2003 and 2009, multiple Lyme tests (ELISA) were negative.  However, the general ELISA test can be up to 70% inaccurate.  If the physicians had requested the Western Blot to be run regardless of the ELISA result, Sharon could have received the correct diagnosis earlier and avoided much of the debilitating pain.  The numerous specialist visits and misdiagnoses culminated in 2009, including  being told she required immediate back surgery, a misdiagnosis of Lupus, and a subsequent misdiagnosis of Bursitis, all within four months.   

A GUIDING LIGHT

Sharon’s uncle, whose wife died at age 57 due to Lyme disease that was not diagnosed in time, became Sharon’s “guiding light.”  Refusing to let Sharon give up or accept a misdiagnosis, her uncle not-so-gently prodded her to keep trying, while providing extensive documentation to prove to Sharon that she had Lyme disease.  Finally, in September of 2009, Sharon found a Lyme Literate Medical Doctor (LLMD) who diagnosed her with Bartonella, a co-infection of Lyme disease and Babesia, after further testing.   

SHE MAY NEVER BE CURED

Diagnosis is only the first step.  Sharon’s treatment will take more than a year. Since treatment began only four months ago, many symptoms have lessened; she is feeling much better already.  Although there are some setbacks; some of the medications can initially increase the severity of the symptoms, but Sharon knows she will conquer this disease. 

Sharon’s current list of medications includes several supplements such as Vitamins B and D, natural blood thinners, probiotics, digestive aids, baby aspirin, and antibiotics.   

SHARON’S ADVICE

Lyme disease is incredibly hard to diagnose without the aid of a Lyme Literate Medical Doctor (LLMD).  Sharon was tested for Lyme disease more than once, dating as far back as 2003, but only the ELISA test was performed.  The ELISA test is about 20%-30% accurate, depending upon the laboratory used.  It is imperative that your doctor write on the lab scrip for the lab to run the Western Blot IgL and IgM EVEN IF THE ELISA IS NEGATIVE and make sure you receive a copy of the results.  If ANY of the DNA bands are POS (Positive) or IND (Indefinite), you need to see a Lyme Literate Medical Doctor (LLMD).  Many patients have been misdiagnosed even though some bands were positive, because the “right” bands were not positive.  As an example, Sharon’s first test showed one positive band, the second test showed three positive bands, and the third test showed five positive bands, but each time doctor insisted that she did not have Lyme disease.  With present state of the art testing procedures, the actual DNA sequences of where the Lyme resides can be isolated. 

If you are suffering with bizarre, changing symptoms, do not give up.  Trust your instincts, advocate for yourself, get multiple opinions, keep a copy of every test and medical record, and ask for help and support from loved ones.  Most importantly, make sure that you are properly tested and see an LLMD, even if you have to wait months to get an appointment. 

CONTACT SHARON

If you would like to talk to Sharon to get more information, share your Lyme story, or for any other related reason, she is more than happy to share a cup of coffee, emails, letters, or a phone call.  Please do not hesitate to contact her via phone at 702-929-2399 or via email at Sharon@myneighborsnetwork.com.  

AWARENESS

We sincerely hope that by sharing a synopsis of Sharon’s story you can see just how important it is to be aware of every aspect of Lyme disease.  Only when ignorance of Lyme disease no longer pervades the citizenry, the insurance and pharmaceutical industries, and the medical associations can we truly begin to properly diagnose, treat, and prevent Lyme disease efficiently.  If you have any questions, comments, or concerns regarding Lyme disease, please do not hesitate to contact us here at Mosquito Squad or to contact Sharon.  If you think you may have Lyme disease, we implore you to get tested properly by a Lyme Literate Medical Doctor.  You are not alone.  
 

LINKS

For more information on Lyme disease, please visit the National Capital Lyme and Tick-Borne Disease Association.

For more information on Lyme Literate Medical Doctors, visit the International Lyme and Associated Diseases Society. 

To read about Sharon’s ongoing battle with Lyme disease, read her poignant and moving blog, Living with Lyme. 

See our earlier blog post about Protecting Yourself From Tick Bites. 

Check out Damien’s post on the Rising Occurrence of Lyme disease.

by: Damien Sanchez

I just called my represntive about HB 512 and I wanted to  make it as easy as possible for you to speak with your rep.  If you live in Virginia and you dont konw who your rep is, go to http://conview.state.va.us/whosmy.nsf/main?openform to find out.  Call your rep today and tell them you support HB 512.

The National Capital Lyme and Tick-Borne Disease Association (NATCAP) has been working closely with Delegate Rust and his staff on this bill.  Delegate Rust, NATCAP, and Mosquito Squad urge everyone to call or write their Virginia delegate or senator and ask him or her to sign-on to this bill.  The legislation must be read within 30 days or it will die, so please help us to ensure that Lyme disease patients receive adequate treatment without their doctor facing disciplinary action.

Please visit www.natcaplyme.org, where you can read the bill and find your local delegate from the legislative listings.  NATCAP provides a sample form letter, or you can create your own message, that allows you to quickly send the message that you strongly support the bill, are counting on his or her support, and are asking him or her to sign-on to the bill as a co-sponsor.

Help us to circulate this information and keep this very important piece of legislation from dying by sending this information to all of your friends!  If we all band together, we can make a huge difference and help Lyme disease patients secure the long-term treatment that they need!

Having recently become a member of NATCAP Lyme I wanted to pass on to everyone that coming in February Helene Jorgensen will be speaking at the February Meeting, Below is the announcement.

Helene Jorgensen (Ph.D. American University, Economics; M.S., George Mason University, Environmental Science and Policy) studies health care, labor markets, and employment benefits. Her forthcoming book, Sick and Tired: How the U.S. Health Care System Fails Its Patients (Polipoint Press, February 2010), tells the story of her own battle with Lyme disease and examines the institutional failures of the health care system.
 
BOOKS WILL BE AVAILABLE FOR PURCHASE
 
Sunday, February 7, 2010
Presentation & Book Signing: 2 – 4 PM
Ernst Auditorium
Sibley Memorial Hospital
5255 Loughboro Rd., N.W., Washington, DC 20016
 Click Here for Directions
 
Helene Jorgensen spent many sleepless nights worrying about her growing pile of medical bills. Since being diagnosed with neurological Lyme disease in 2003, her good-on-paper health insurance repeatedly denied claims. She got stuck with paying thousands of dollars out-of-pocket, because of quantity limits on prescription drugs and out-of-network care. At the same time, she had to fight for continued treatment for her Lyme disease. 
 
Sick, sleep deprived and frustrated, Jorgensen set out to uncover why the health care system was failing her and so many other patients. What she learned surprised her and compelled her to write the book: Sick and Tired: How the U.S. Health Care System Fails Its Patients (Polipoint Press, February 2010).
In Sick and Tired, Jorgensen combines her own experiences as a patient, with her background as an economist, to discuss the role of insurance companies in determining care. She examines the incentive structures of health care providers. She exposes pharmaceutical companies influence over prescription patterns, and the deceptive billing practices by laboratories, such as Quest Diagnostics. Based on the lessons she learned, Jorgensen offers practical advice to help patients reduce their health care costs and demand better care.
 
This education, discussion and support group is sponsored by the National Capital Lyme & Tick-Borne Disease Association for patients, their family members and friends.
 Attendees may be chemically sensitive: No scented products, please.  For information and directions. See www.natcaplyme.org  or call (703) 821-8833

National Capital Lyme & Tick-Borne Disease Association
natcaplyme@natcaplyme.org
www.natcaplyme.org
Phone & fax: 703-821-8833