Renowned Lyme Disease Researcher Dr. John N. Aucott to Be Honored at “Time for Lyme” Annual Gala

John N. Aucott, M.D.

His clinical expertise and dedicated efforts toward unraveling the natural history of Lyme disease are worthy of the Hope Award’s prestigious recognition.

Dr. Aucott, president of the Lyme Disease Research Foundation and the principal investigator of a landmark series of Lyme studies done in collaboration with scientists at Johns Hopkins University School of Medicine, will receive the Lauren F. Brooks Hope Award at the Lyme Research Alliance and Tick-Borne Disease Alliance annual Gala, April 11, 2015 at the Hyatt Regency Greenwich in Old Greenwich, CT.

Lyme disease: a review of its epidemiology, evaluation, and treatment.

This is a letter to the Executive Director of Psychosomatics Journal by Lyme disease patient advocate and activist Carl Tuttle, from Hudson, NH. There are some very important points he makes here, such as how very quickly a tick can infect a human, how many patients do not see a skin rash after a tick bite, and whether infection persists after antibiotic therapy. At the end of this post you'll find 19 external links to articles, studies, case reports and letters to editors, as well as a list of legislators working on Lyme bills to help patients reclaim their health and Lyme-Literate doctors to protect their private practices and continue to serve the Lyme community 

-Bob

Psychosomatics. 2014 Sep-Oct; 55(5):421-9. doi: 10.1016/j.psym.2014.02.006. Epub 2014 Apr 19.

Tick-borne illness in N California

Borrelia burgdorferi Sensu Lato Spirochetes in Wild Birds in Northwestern California: Associations with Ecological Factors, Bird Behavior and Tick Infestation.

http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0118146

Article from MSN News City Lab John Metcalfe Tick-borne Lyme disease might tread warily in forests and high grass. But research suggests the bacteria responsible for Lyme lives in more-developed conditions, too, such as the meticulously manicured landscape of the suburbs.

A new support group for parents of children with Lyme disease

Please share this with others who it may help!

TOUCHED BY LYME: New support group for parents of kids with Lyme - See more at: http://lymedisease.org/news/touchedbylyme/lyme-parents-groups.html#sthash.ax0Flklj.dpuf

 

http://lymedisease.org/news/touchedbylyme/lyme-parents-groups.html

LymeParents Yahoo group offers a forum for parents (and other family members) of children with Lyme disease to share information and mutual support.

Being the parent of a child with chronic Lyme disease can be a very isolating experience.

A decade ago, when my daughter was at her sickest, there were days that I couldn't even leave the house. What I could do–usually when she was sleeping–was go online to Lyme support groups, which were a lifeline for me. They offered me information, encouragement, and sometimes, a place to vent my frustrations....

- See more at link above.

TOUCHED BY LYME is written by Dorothy Kupcha Leland, LymeDisease.org's VP for Education and Outreach. Contact her at dleland@lymedisease.org. On Twitter, she's @dorothyleland. (And LymeDisease.org is @LymeNews.)

Doctors infected with tick-borne virus

http://m.koreatimes.co.kr/phone/news/view.jsp?req_newsidx=174122

Doctors infected with tick-borne virus

By Kim Rahn

Two doctors and two nurses were infected with a tick-borne virus last year after treating an infected patient ― the first case of human-to-human transmission of the disease in Korea, according to health authorities Wednesday.

An unidentified woman, 68, was hospitalized..with septicemia symptoms. As her condition got worse and she fell unconscious. Her condition rapidly deteriorated the next day and she died. It was confirmed she had severe fever with thrombocytopenia syndrome (SFTS). SFTS is a disease passed though the bite of haemaphysalis longicornis, a type of tick. The fatality rate here in 2013 was 47.2 percent. Four staff members began suffering from fever and muscle pain, and their blood tests also showed they were infected with the SFTS virus. They all recovered.

There were five reported cases of human-to-human transmission in China between 2012 and 2013. In 2013, when the virus was first uncovered here, 36 people were infected and 17 of them died. The 2014 tally is not yet available.

[Fortunately we do not have these ticks in the USA at this time. ~ Bob C.]

---------- more information below -----------

*  http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3813991/        

Microbial communities and symbionts in the hard tick Haemaphysalis longicornis (Acari: Ixodidae) from north China

 

**Haemaphysalis longicornis is a species of tick.^[1] Lyme spirochetes and spotted fever group rickettsiae have been detected in H. longicornis,^[2] as have Ehrlichia chaffeensis and Anaplasma bovis.^[3] STFS has also been shown to be transmitted via Haemaphysalis longicornis.

Above and Beyond Antibiotics

Here is a webpage and a television news story about the need for more than antibiotics in treating Lyme disease. It's essentially about biofilms and multiple co-infections that are nonbacterial, such as fungus, mold and viruses. The brief video interviews and the news story covering 300,000 newly-infected patients every year are encouraging, partly because the topic of persistence after antibiotic therapy is treated respectfully by the reporter. -Bob

http://sheamedical.com/above-and-beyond-antibiotics

Another properly diagnosed patient!

CDC Conference Call on ME/CFS/SEID Monday 3pm EST

This looks like a pretty interesting conference call. It is going to be available to anyone, apparently. It looks as though Stanford is hosting it. It will be about the current state of research on chronic fatigue syndrome. Dr. Jose Montoya will lead it. 

As some of you may know, Dr. Montoya contends that a lot of what we call Lyme disease is caused by viruses rather than bacteria. He treats with antiviral drugs rather than antibiotic drugs. A Lyme doctor of mine once said that when comparing notes with Dr. Montoya, their patients' symptoms seemed identical. Is a pretty well-known fact that many people with Lyme disease and Chronic Fatigue Syndrome have both high bacterial and high viral titers. So it is a little unclear what the causative microbes are and what the opportunistic microbes are.

http://scopeblog.stanford.edu/2015/02/19/stanford-expert-do-discuss-systemic-exertion-intolerance-disease-formerly-chronic-fatigue-syndrome-during-public-call/

http://www.cdc.gov/cfs/meetings/cfspcoca.html

Both links are provided for me. I'm not sure which one does what. The second one is probably just another portal into the call.

-Bob

Fwd: NYTimes.com: The Bright Side of Parkinson?s

Opinion The Bright Side of Parkinson?s By JON PALFREMAN To understand this disease is to understand the brain. Or, copy and paste this URL into your browser: http://nyti.ms/17FCRdV

L

Newly Found Virus Linked to Kansas Death After Tick Bite

(Bloomberg) -- U.S health officials are investigating a new strain of virus linked to the death of a Kansas man, who fell ill after being bitten by a tick, then went into organ failure and died about two weeks later. 

The Centers for Disease Control and Prevention said Friday that it's working with Kansas officials to find any other cases. They've named the virus "Bourbon" after the county where the man lived. 

The pathogen belongs to a group known as thogotoviruses. The Kansas man's death is the first time a thogotovirus is known to have caused human illness in the U.S., and only the eighth time one is known to have caused symptoms in people, according to an article published Friday in the CDC's Emerging Infectious Diseases journal. 

The Kansas man was doing outdoor work in Bourbon County last year, the CDC said, when he went to the doctor after finding an engorged tick on his shoulder and falling ill a few days later. He had a fever and headache, according to the article, and was given an antibiotic commonly used against tick-borne diseases. The man's condition didn't improve, however, and his kidney function deteriorated and he couldn't breath on his own. On day 11 of his illness, he died.

Kansas officials said in December that they were investigating the virus with the CDC, and that it resembled other tick-borne illnesses. 

Before he became sick, the man, who was more than 50 years old, was considered healthy, the CDC said in the report. CDC researchers identified the virus by looking for genetic traces in the man's blood. 

The recent discovery of Heartland virus in Missouri, also possibly linked to ticks, led the CDC to say that "that the public health burden of these pathogens has been underestimated." Next-generation sequencing, a fairly new technology that can scan blood samples for many viruses or bacteria at once, will help health researchers make similar discoveries in the future, the CDC said. 

Original story:

http://www.bloomberg.com/news/articles/2015-02-20/newly-found-virus-linked-to-kansas-man-s-death-after-tick-bite

 

To contact the reporter on this story: Anna Edney in Washington at aedney@bloomberg.net

To contact the editors responsible for this story: Crayton Harrison at tharrison5@bloomberg.net Drew Armstrong, Cecile Daurat

New test for Babesia

Experimental Parasitology

February 2015, Vol.149:24–31, doi:10.1016/j.exppara.2014.12.003

Development of droplet digital PCR for the detection ofBabesia microti and Babesia duncani

http://www.sciencedirect.com/science/article/pii/S0014489414002732#st0010

Highlights

• •

  This is the first report of ddPCR assays for Babesia microti and B. duncani.

• •

  The B. microti assay detected parasitemia as early as 3 days of hamster infection.

• •

  The assays were 100% specific when compared with other blood-borne pathogens.

• •

  ddPCR may become a useful tool in the diagnosis of Babesia in human blood.

  
  

  Abstract

  Babesia spp. are obligate protozoan parasites of red blood cells. Transmission to humans occurs through bites from infected ticks or blood transfusion. Infections with B. microtiaccount for the majority of the reported cases of human babesiosis in the USA. A lower incidence is caused by the more recently described species B. duncani. The current gold standard for detection of Babesia is microscopic examination of blood smears. Recent PCR-based assays, including real-time PCR, have been developed for B. microti. On the other hand, molecular assays that detect and distinguish between B. microti and B. duncaniinfections are lacking. Closely related species of Babesia can be differentiated due to sequence variation within the internal transcribed spacer (ITS) regions of nuclear ribosomal RNAs. In the present study, we targeted the ITS regions of B. microti and B. duncani to develop sensitive and species-specific droplet digital PCR (ddPCR) assays. The assays were shown to discriminate B. microti from B. duncani and resulted in limits of detection of ~10 gene copies. Moreover, ddPCR for these species were useful in DNA extracted from blood of experimentally infected hamsters, detecting infections of low parasitemia that were negative by microscopic examination. In summary, we have developed sensitive and specific quantitative ddPCR assays for the detection of B. microti and B. duncani in blood. Our methods could be used as sensitive approaches to monitor the progression of parasitemia in rodent models of infection as well as serve as suitable molecular tests in blood screening.

VIRAS Microscopy Presentation on Lyme

This is a must-see slide and movie show of Borrelia (Lyme disease bacteria) from the microscope. It knocked my socks off. The photography is so clear, and the description of the spirochetes and how they operate is very understandable in new and graphic detail, at least for me. This was part of a recent presentation to the National Health program in England that may have turned the tide in favor of chronic Lyme disease suffers in the UK.

http://www.counsellingme.com/microscopy/MeetingMicroscopy.html

Here's some more information about the actual meeting and who was in attendance, etc.

 

Peter Kemp's presentation demonstrating his microscopy is well worth a look:

 

http://www.counsellingme.com/microscopy/MeetingMicroscopy.html

 

Great to see this being presented in our parliament and in front of those whose responsibility it is to solve many of the problems with Lyme treatment in the UK. 

 

 Meeting for Lyme Borreliosis Patients with Public Health England at the Houses of Parliament 19th January, 2015

 

There are many important scientific presentations archived on this site:

 

Meeting for Lyme Borreliosis Patients with Public HealthEngland at the Houses of Parliament 19th January, 2015

 

http://www.counsellingme.com/ParliamentaryLymeMeeting/MeetingIntroduction.html

 

Concise Summary of the Meeting

On 19th January 2015 a large group of patients and families converged on Meeting Room 14 in the Palace of Westminster for a meeting with PHE and Department of Health representatives and our own panel of experts, facilitated by Simon Hughes MP and chaired by The Countess of Mar. The meeting was brought about by the incredible energy and determination of Demetrios Loukas and Denise Longman.

On the government panel were:

Tim Brooks, Head of Rare and Imported Pathogens Laboratory, PHE
Amanda Semper, Scientific Program Manager, Rare and Imported Pathogens Laboratory, PHE
Ailsa Wight, Deputy Director Infectious Diseases and Blood Policy Branch, Department of Health Public Health Directorate

Simon Hughes introduced the meeting and then handed over to the Countess of Mar to chair.

The Countess of Mar opened with a speech that showed how clearly she understands and sympathises with the issues of Lyme Disease. She talked about scientific method, referring to the history of Galileo, and the need always to reconstruct theories in the light of evidence. Microscopy was where the science started and microscopy and culture are the way forward now. She told of the attitudes to Lyme now, the discounting of it as "fashionable", the way sero-negative patients are always denied diagnosis, and the lack of credibility of the low UK Lyme figures compared to the much higher, and climbing, figures elsewhere in the world.

Armin Schwarzbach MD PhD (specialist for laboratory medicine and infectious diseases from Augsburg, Germany) pointed out the great age of the Borrelia bacterium, believed to be 15 million years. Now it is known to exist in many subspecies around the world and pleomorphic forms and biofilms have been cultured in vitro. (See his latest paper at

http://mic.sgmjournals.org/content/early/2015/01/05/mic.0.000027.short

Dr Schwarzbach then discussed the early and later responses of the body to Lyme infection, sharing information well-accepted by Lyme doctors and patients. A discussion of some of the testing difficulties and inter-test disagreements followed - negative ELISAs giving positive immunoblots, low test sensitivity, the problem of false negatives, the difficulties of the persistent IgM response which confuses non-experts, and the difficulty of finding Lyme in the CSF (cerebrospinal fluid).

More generally, but still important, he noted that although Lyme symptoms can appear unspecific, the combination or pattern of symptoms is very diagnostic. However this takes time (at least an hour) to draw out of a consultation. Tests on the cellular immune response, eg LTT and Elispot, are better than looking for antibodies, but NO illness can be ruled out solely by lab tests. He talked about the involvement of Borrelia in the wide variety of damaging and economically important diseases with which we are familiar, Alzheimer's, where the plaques can be Borrelia biofilms, Autism, MS etc, emphasized that treatment must always be continued until symptoms are controlled, and then compared in detail the contrasting attitudes of the CDC and "other" clinicians and scientists to Lyme Disease and its treatment.

He left us with a list of proposals that in his view are necessary before the UK treatment of Lyme will be adequate. Briefly this included improved testing, antibiotic use, studies of pleomorphy, new antibiotics, training of new and established doctors, and education of the public.

 

Read more…..

You CAN recover from Lyme disease.

Lyme Disease Success Stories All of us who struggle with Lyme Disease can empathize. We see pieces of our own stories in these. We've walked through many of the same doors, and been in some of the very same situations. Although each of our stories are unique, together they can help us understand the common threads that can, eventually, lead us back to vibrant health.  We invite you to listen to others tell how they have successfully fought the pernicious Lyme bug. It's very easy to find discouraging news. However, paying attention to somebody's success -- somebody who has walked in your shoes -- is more than merely comforting. It is incredibly encouraging. There is life after Lyme Disease!  Learn More

New research targets Borrelia burgdorferi nutrients

New research targets Borrelia burgdorferi nutrients, but funding pales when compared to public health cost

 

John Ferro, Poughkeepsie Journal

12:04 a.m. EST February 14, 2015

 

In 1982, a scientist, whose job was to study how insects and other bugs affect the health of people like you and me, found something unexpected in the belly of a tick.

Peering into his microscope, Willy Burgdorfer saw stringy, coiled bacteria living in the tick's midgut.

 

The spirochete he saw eventually was named after him — Borrelia burgdorferi, the bacterium that causes Lyme disease.

 

And so began the study of the pernicious and inscrutable bug that plagues hundreds of thousands of people each year, particularly here in the Hudson Valley. Research has found that Borrelia has a number of unexpected traits, one of which could provide a clue into how to defeat it.

 

One of the fundamental assumptions of how diseases develop assumes that pathogens can't thrive if they are deprived of iron.

 

Indeed, that is one way the body often fights off infection — by shunting the flow of iron to disease-causing bugs like Borrelia.

 

But in 2000, researchers at the University of Georgia discovered that much to their surprise, the Lyme disease pathogen is not undermined when it is deprived of iron.

Then, in 2013, researchers at Johns Hopkins University's Bloomberg School of Public Health found that instead of iron, Borrelia can — and needs to — acquire high levels of manganese to become virulent.

 

In a testament to the pain and anguish associated with Lyme, a number of reports followed that study cautioning the disease's sufferers against a low-manganese diet.

(The Lyme bacterium gets what it needs no matter how little manganese is in your diet, and everyone needs small amounts of dietary manganese every day. Borrelia also seems to need zinc.

 

Other research has identified the protein that allows the pathogen to take in the metals it needs from the surrounding environment.

So, the thinking goes, if you can inhibit the protein that takes up the manganese, perhaps you can starve, or at least degrade, the pathogen.

 

A study released Wednesday examined the impact a common antihistamine might have on the protein's effectiveness.

The results were intriguing, but the study was only conducted in a laboratory setting.

Without clinical trials, its findings are suggestive at best, a number of experts in the field told me.

 

Lyme costs are weighed

Meanwhile, another Johns Hopkins study, released Feb. 5, estimated the direct costs for prolonged treatment of Lyme disease symptoms.

The study puts those costs at between $712 million and $1.3 billion a year — or nearly $3,000 per patient, on average.

 

The study said these costs are from return doctor visits and testing required to investigate lingering symptoms such as fatigue, muscular or skeletal pain and memory problems — even after a course of antibiotics has been completed.

 

But those figures get even higher when you factor in costs such as:

• Indirect medical costs (such as extra prescription and nonprescription drug costs that patients paid out of pocket).

• Non-medical costs (for home or health aides and miscellaneous services, such as transportation and babysitting).

• Lost wages.

 

US Biologic, a Memphis-based company that does research on Lyme disease prevention, did a little extrapolation of a CDC study that estimated the total cost burden in 2002. The company multiplied CDC's figure by the CDC's own revised estimates of Lyme disease cases, estimates that indicate Lyme is 10 times more prevalent than previously thought.

 

And it adjusted those figures for inflation.

 

The full cost in 2014? About $3.2 billion a year for direct and indirect costs. Now, compare that to just $23 million in annual funding for Lyme disease researchfrom the National Institutes of Health, and one wonders — what about Lyme disease is actually being starved?

 

"Out There" appears every other week in My Valley. Reach John Ferro at 845-437-4816; jferro@poughkeepsiejournal.com; Twitter: @PoJoEnviro

 

 Carl Tuttle

Hudson, NH 03051

Website: New Hampshire Lyme Misdiagnosis

 

Petition: Calling for a Congressional investigation of the CDC, IDSA and ALDF

 

Letter to the Editor, The Lancet Infectious Diseases Published May 2012

 

Bob's state of the port photos

I haven't done a personal check-in for quite a while. There's lots to report (like, about two years' worth) but I've been too busy to do it. However, I have a few photographs here that I'll share about the recent goings-on with my Lyme disease and Parkinson's treatments.

You may recall that my last port got infected, I got infected blood (sepsis), and had it removed. I have the whole removal surgery on video (thanks to my friend Marlene who is a filmmaker and doesn't sky away from grossnitude nor blood). But even I haven't watched it yet because I know the surgeon was hacking around in there for about 20 minutes, trying to free up the darned port from all the connective tissue that had grown around and into it.

Anyway, here's what my new port looks like now. Seems to be in pretty good shape. I am using minimal bandaging. Where the line goes over the top of the clavicle it seems to bruise, so the skin is a little bit yellow there. Sometimes it hurts at that spot. That can happen if I wear a heavy coat or jacket with my phone in the pocket, applying pressure at that spot.

This port seems to be working fine, no clogs for the last two or three weeks since it was installed. I didn't want a double lumen I wanted to the single, so that's kind of annoying to have the extra gadget there that is not necessary. I use the red one mostly and leave the purple one alone although I do have to flush it occasionally and put heparin in it so blood will not clot inside the line. I am much preferring this kind of port to the Porta calf that I had last time. Even though it's a hassle to have it always hanging off of my chest, I didn't like using the kind of port where I had to impale myself with a needle in order to access it. With this one there's no pain ever, and although I can't go swimming, and have to be careful in the shower, it's worth the extra hassle.

The bottom two photographs are of the two "punch biopsy" samples that were taken by Dr. Silva (neurologist) a couple of days ago to determine nerve fiber density. Although a local anesthetic was used, taking the samples really hurt! Think cookie cutter. Or imagine a pencil with an eraser. The eraser held in by a metal thingy. You know, your basic #2 pencil. Pull out the eraser and you've got pretty much what this tool looks like. The doctor rotates it while pushing against the skin, and it cuts a round hole. Then he removed the tool slowly and it pulled some flesh with it. Then he cut that off with a scalpel or scissors (not sure which, as I wasn't looking). 

Just above the left, outside ankle. Hmm. This photo looks upside down. That's my foot at the top of the photo.

They seem to be healing well. The doc said it would fill in and look fine, though a little white, due to lack of melanin.

I don't have the results yet. If the results are positive, this will help me to procure IVIG (intravenous immunoglobulin) at a reasonable price. IVIG should help on the immune system front and perhaps assist the body begin to naturally fight off and reduce the bacterial and viral load that tests indicate are present.

Some of the latest Lyme disease news stories

From Lyme Disease blogs

Treating Lyme disease costs nation $1.3 billion annually Can Claritin help cure Lyme disease? Chronic fatigue not "psychosomatic," says IOM panel  Congressman Gibson re-introduces federal Lyme bill FDA and Lyme disease testing Connecting with other teen "Lyme-a-beans"

LymeDisease.org, publisher of The Lyme Times, advocates nationally for people with tick-borne diseases, educates the public, and helps fund medical research. We are the go-to source for news, information, and health policy analysis in the Lyme community. Become a member today.

13 year-old paralyzed because of Lyme (TV news, France)

ENGLISH SUBTITLES 

13 year-old paralysed because of Lyme, finally diagnosed and treated by Prof Perronne and is now walking, writing and talking after 2 months of treatment.

Short but powerful news item on French National TV yesterday sat Feb 7^th 2015

https://www.youtube.com/watch?v=ABji9ebeKf0&feature=youtu.be

Lyme disease costs up to $1. 3 billion per year to treat, study finds

Date:
February 5, 2015
Source:
Johns Hopkins Bloomberg School of Public Health
Summary:
New research suggests that a prolonged illness associated with Lyme disease is more widespread and serious in some patients than previously understood.

Lyme disease, transmitted by a bite from a tick infected by the Borrelia burgdorferi bacteria, had long been considered easy to treat, usually requiring a single doctor's visit and a few weeks of antibiotics for most people.

But new research from the Johns Hopkins Bloomberg School of Public Health suggests that a prolonged illness associated with the disease is more widespread and serious in some patients than previously understood. With an estimated 240,000 to 440,000 new cases of the tick-borne illness diagnosed every year, the researchers found that Lyme disease costs the U.S. health care system between $712 million and $1.3 billion a year -- or nearly $3,000 per patient on average -- in return doctor visits and testing, likely to investigate the cause of some patients' lingering symptoms of fatigue, musculoskeletal pain and memory problems. These visits come after patients have finished their original course of antibiotics.

More: http://www.sciencedaily.com/releases/2015/02/150205095049.htm

Smith Introduces National Lyme Disease Bill

New Jersey ranks 4th in U.S. in Lyme cases

Lyme Disease Association Backs Legislation

http://chrissmith.house.gov/news/documentsingle.aspx?DocumentID=397880

 

 

Washington, Feb 4 | Jeff Sagnip ((202) 225-3765) 

 

     Continuing the fight to better assist patients and families impacted by Lyme disease, Congressman Chris Smith (R-NJ) announced the re-introduction of his bipartisan bill to establish a federal Tick-Borne Diseases Advisory Committee to better deliver results for those living with this debilitating illness.

    "Lyme disease has been particularly devastating in New Jersey, where it is estimated that over 59,000 individuals have reported cases of Lyme over the past 15 years," Smith said. According to recent data, 95 percent of Lyme disease cases were reported from 14 states, and New Jersey was fourth highest.

     "We need to redouble our efforts to help Lyme patients and their families in need of real solutions," said Smith, co-chair of the House Lyme Disease Caucus who has worked on issues impacting the Lyme community since the early 1990s. "Lyme rates are increasing all over the country, yet many are unaware of the seriousness of this disease and its potentially far-reaching effects. If not diagnosed and treated early, Lyme disease can lead to chronic illness and can affect every system in the body."

    Smith and Rep. Collin Peterson (D-MN) are co-chairs of the House Lyme Disease Caucus—a bipartisan organization dedicated to educating Members of Congress and staff about Lyme and other tick-borne diseases, as well as advancing initiatives that are designed to help the estimated 363,000 Americans who suffer from Lyme disease each year.
 
     "This bill would ensure that experts and patients have a seat at the table when decisions are made impacting Lyme disease research, diagnostics and treatments," Smith said.

    Specifically, HR 665 tasks the Secretary of Health and Human Services with establishing a Tick-Borne Diseases Advisory Committee to enhance coordination and improve communication among federal agencies, medical professionals, and patients. The committee will operate in a transparent and open manner, advising the Secretary on Lyme disease policy and submitting annual reports on the Committee's activities.

    The Lyme Disease Association (LDA) is headquartered in Smith's district in Jackson Township Ocean County N.J. Pat Smith, President of the LDA, commended the legislation.

     "The LDA is pleased to have legislation introduced into the House which provides a tick-borne diseases advisory committee which is governed by FACA rules to ensure transparency and accountability and which provides at least 4 people at the table who represent the patient community: 2 from patient groups and 2 patients themselves or family members," said Pat Smith (no relation to Rep. Smith). "It also provides a seat for at least two health care providers, with relevant experience providing care for individuals with a broad range of acute and chronic tick-borne diseases."

     In 2013, the CDC announced what Smith and the Lyme community already knew: only 10 percent of cases were being reported and the actual number of Lyme cases is well over 300,000—not 30,000 as CDC had previously insisted. This report has heightened the urgency for a coordinated, targeted effort to assist Lyme patients.

     "Designing the process to better focus on improving outcomes after a Lyme diagnosis will not only ensure more effective policies, but will help to raise the quality of life for patients and assist the loved ones who care for them," Smith said.

    Smith held the first ever congressional hearing on Lyme before the global health subcommittee he chairs, which focused on the disease in the U.S. and other nations.