CDPH Cautions Californians About Ticks And Tick-Borne Diseases

Excerpt:

Dr. Ron Chapman, director of the California Department of Public Health (CDPH) and state public health officer, today warned individuals who work or play outdoors in the winter months to be on the alert for ticks that may carry bacteria that cause Lyme disease and other tick-borne illnesses.

If that is the percentage in Connecticut, it would be easy to imagine that things are a lot worse in less endemic states. The survey was for primary care docs only, meaning the results are probably skewed low because Lyme specialists and infectious disease docs weren’t included. Nevertheless, many sick with Lyme disease don’t know it and don’t know which experts to go see, so of those in this boat, we can presume that 98% are misdiagnosed.

For more news bytes like this one (updated a bit more frequently), see my Facebook page:
http://www.facebook.com/pages/BioMed-Publishing-Group/317453336663

Also, for those of you who haven’t yet read Nicola McFadzean’s book, I want to make you aware that we now carry it in PDF format for instant download:
http://www.lymebook.com/lyme-diet-book-nicola-mcfadzean-nd
(See link highlighted in yellow at top right hand side of page.

http://news.bostonherald.com/news/regional/view/20100823lyme_disease_found_in_larger_area/

Excerpt:

BOSTON — Public health officials say more Massachusetts residents are being diagnosed with Lyme disease, and many of them are picking up the tick-borne ailment in areas of the state where it was relatively rare a decade ago.

State Department of Public Health figures show that the disease, once most common on Cape Cod and the Islands, is now seen more in Middlesex, Norfolk, and Worcester counties.

There were 4,042 Lyme disease cases statewide last year, compared with 1,194 in 2000.

MUST READ:
http://www.phac-aspc.gc.ca/publicat/ccdr-rmtc/08vol34/dr-rm3401a-eng.php

Others:
http://www.cmaj.ca/cgi/content/full/180/12/1221

http://www.allheadlinenews.com/articles/7015434469

To get help dealing with Lyme in Canada, visit the Canadian Lyme Disease Association:

http://www.canlyme.com/

New Hampshire Incidence

The number of New Hampshire residents diagnosed with Lyme disease and reported to the NH Department of Health and Human Services (DHHS) has increased in recent years. The highest rates of disease occurred in Rockingham, Strafford, Hillsborough, Merrimack, and Carroll Counties.

Tick numbers

• Black-legged ticks are common in southeastern New Hampshire (Strafford, Rockingham,
Hillsborough, Merrimack Counties); large numbers of ticks were collected in these locations.

• Black-legged ticks are rare in northern and mid-western New Hampshire (Sullivan, Coos,
Grafton Counties); no ticks were able to be collected in these locations. 

• Black-legged ticks are less common in southwestern and mid-central New Hampshire
(Cheshire, Belknap, Carroll Counties); few ticks were able to be collected in these locations.

New Hampshire Support Groups for Lyme Disease

Name of Support Group:  Greater Manchester Lyme Disease Support Group
Contact Person for this Group:  David Hunter
Contact Person Telephone: 603-488-5371
Contact Person E-Mail: dhunter31@gmail.com
City: Manchester
State or Province: New Hampshire
Country: USA
Regions of your state / province served by this group (i.e. south-east Pennsylvania):  Southern New Hampshire
Your Name:  
Your E-Mail Address:  
Other Information: The group meets on the third Wednesday of every month at 7PM at:
First Congregational Church of Manchester
508 Union Street
Manchester, NH
URL For Support Group:  

Name of Support Group:  Northern New Hampshire Lyme and Associated Diseases Support Group
Contact Person for this Group:  Laurie Patrick
Contact Person Telephone:  
Contact Person E-Mail: northernnhlyme@yahoo.com
City: Berlin
State or Province: New Hampshire
Country: USA
Regions of your state / province served by this group (i.e. south-east Pennsylvania):  North/Central NH, Western Maine, Northeast VT
Your Name:  
Your E-Mail Address:  
Other Information: Feel free to email me and I will call a meeting or connect you with others close by. 
I would also encourage you to get involved with the Lakes Region Support Group. They have become very active.

Name of Support Group:  Know Lyme in NH
Contact Person for this Group:  Judy
Contact Person Telephone:  
Contact Person E-Mail: KnowLyme@yahoo.com
City: Concord
State or Province: NH
Country: USA
Regions of your state / province served by this group (i.e. south-east Pennsylvania):  New Hampshire and Surrounding Areas 
Your Name:  
Your E-Mail Address:  
Other Information: You’ll need a free Yahoo ID, go to Yahoo.com
URL For Support Group: http://health.groups.yahoo.com/group/KnowLymeinNH/
Comments:
This group connects New Hampshire citizens and spreads information about Lyme and Other Tick-Borne Diseases in and near New Hampshire. We serve people with these diseases, their families and friends.
We are a discussion group with members from a wide range of backgrounds who share experience, information, and coping strategies in a positive, non-judgmental environment. We can help you weed through the controversy surrounding these diseases in our time so you can make informed decisions.
This is a member-driven group that relies on its members to ask and answer questions, raise concerns, spread news about events, and support each other with information. We share our experience and explain what we have learned.
Join us to connect with others, share information, and hear about local gatherings and other events.

Name of Support Group:  Lakes Region LYME Support
Contact Person for this Group:  Nancy Bourassa
Contact Person Telephone: Voice Mails for Nancy @ 1-888-596-5698
I will generally get back to you within 24 to 48 hours.
Contact Person E-Mail: LakesRegionLYMESupport@YahooGroups.com
City: Laconia
State or Province: NH
Country: USA
Regions of your state / province served by this group (i.e. south-east Pennsylvania):  Lakes Region & Central NH ….and anyone else that has Lyme or is interested in supporting those suffering from Lyme disease and the co-infections.
Your Name:  
Your E-Mail Address:  
Other Information: Monthly meetings on last Saturdays (for 2008) from 2 to 5 PM (except May is on 24th).
URL For Support Group: http://groups.yahoo.com/group/LakesRegionLYMESupport
Comments:
Meetings at ‘TAYLOR COMMUNITY’ 435 Union Ave in Laconia, NH in “Woodside Building” at the top of the hill…about 1/2 mile up the main ‘entrance road’. Facility is handicap accessible. There is no provision for children or pets…so please make other arrangements for them on these days. Thank you!
PLEASE VISIT and JOIN THE YAHOO GROUP (above) AND VIEW THE CALENDAR AS WELL FOR MEETING DETAILS. 

I found the below data on Lyme disease in New Jersey broken down by county and reported in cases per 100,000. I apologize the data is so old – 1998 – if anyone has updated data let me know. It is interesting to note how wildly variable the data is, with some counties having many many more cases, and a much higher rate, than other counties.

The following are a few support groups for Lyme Disease in New Jersey:

20020518

Hunterdon County NJ Support Group
Sarah Melvin
Hunterdon County Library
Rt. 12 Flemington, NJ
908-788-1444
Meeting times booked monthly, call library

LDF New Jersey Task Force
Roberta Bethencourt

Long Valley Lyme Disease Support Group
Helen Fasy, RN
Our Lady of the Mountain R.C. Church
Rt. 24 & Springtown Road, Long Valley, NJ
908-852-5937
Third Wednesday of each month, 7 – 9 pm
Co-facilitator: Nancy Braithwaite, RN

Lyme Disease Information Group of Burlington County
Sue Huesken
856-461-3369
sueted@bellatlantic.net
Meetings are held the 1st Wed of each month at Cinnaminson Branch of Burlington County Library, Riverton Rd, Cinnaminson, NJ at 7 PM

Morris Area Lyme Support Group
Elsie Anderson
Morristown Presbyterian Parish House 7-9:30pm call church 3rd Tuesday of each month except December

South Jersey Coalition for Lyme Disease
Krista Blumhorst, RN
Old Court House 7pm-9pm,Main St.
Cape May Court House NJ 08210,1st Wednesday of every
Co-facilitator Neil Gibb

The incidence of Lyme disease in Maine continues to increase, and the rate of increase in incidence this year is significant compared to previous years. While this might be partially explained by growing awareness of the signs and symptoms of early Lyme disease among healthcare providers, and in the public, it is also likely that the number of new infections is truly increasing.

Most of the increases in reported incidence have occurred in southern Maine and in the midcoast. Some inland areas, including Kennebec County, have also experienced an upsurge in reported cases, a phenomenon that is consistent with ecological studies tracking changes in deer tick populations.

Lyme Disease Surveillance Report

Maine, 2006

Introduction

Lyme disease is a tickborne disease with variable dermatologic, rheumatologic, neurologic, and cardiac manifestations. The most reliable early clinical indication for the disease is an initial skin lesion commonly referred to as the ”bull’s-eye” rash or erythema migrans, which occurs in 70% to 80% of cases within a month after a tick bite. Untreated infections can lead to late manifestations in the joints, heart, and nervous system. Examples of these late manifestations include: arthritis characterized by recurrent, brief attacks of joint swelling; lymphocytic meningitis; cranial neuritis (such as Bell’s palsy); encephalitis; and second or third degree atrioventricular block.

Methods

Lyme disease is reportable in Maine. For surveillance purposes, Lyme disease is defined as:

1. A person with erythema migrans; or
2. A person with at least one of the late manifestations mentioned above and laboratory confirmation of infection. [Guidance on lab tests can be found at: www.MainePublicHealth.gov]

The Maine CDC investigates and collects surveillance data on reports of Lyme disease. Data presented in this report reflect only those reports that meet the case definition. Maine-specific data presented here were extracted from the National Electronic Disease Surveillance System (NEDSS), a disease-reporting database. National level data are obtained from Morbidity and Mortality Weekly Reports (MMWR). Population denominators are based on 2000 census data.

Results

During 2006, a total of 338 confirmed cases of Lyme disease were reported to the Maine CDC. This represents an overall case rate of 26.5 per 100,000 population. Consistent with state and national data from previous years, physician-diagnosed erythema migrans was reported in about 73% of cases. Fifty-six percent of the cases were male. The median age was 45 years, with a range of 1 to 91 years. Five percent of cases were reported to have been hospitalized.

Five-Year Trend: The number of Lyme disease cases reported in Maine during 2006 is the highest since Lyme disease surveillance began in 1989; reported incidence here has increased steadily since 2000. Over the same period, incidence rates for the U.S. population have been relatively stable while rates for the entire New England region have fluctuated but still remain higher than for Maine. 

Distribution By Month of Onset: In 2006, as with previous years, peak incidence of Lyme disease occurred during the summer months. Sixty-five percent of all cases had reported onset in June, July, or August.

No cases were reported for residents of Aroostook County, Piscataquis County, and Washington County. York County and Cumberland County residents together accounted for nearly 68% of cases, at 133 and 96 cases, respectively. Case rates were highest for York County, Lincoln County, and Knox County (with 71.2 per 100,000, 56.5 per 100,000, and 42.9 per 100,000, respectively).

Case Rates By Age Group: Patient age is highly correlated with reported Lyme disease incidence in Maine. The highest case rates were observed among children between the ages of 5 to 14 years and adults between the ages of 40 to 64. Other high-risk groups were children under the age of five years and seniors 65 years and older. This is consistent with the pattern seen nationally, as well as historically in Maine.

Discussion and Recommendations

The incidence of Lyme disease in Maine continues to increase, and the rate of increase in incidence this year is significant compared to previous years. While this might be partially explained by growing awareness of the signs and symptoms of early Lyme disease among healthcare providers, and in the public, it is also likely that the number of new infections is truly increasing. Most of the increases in reported incidence have occurred in southern Maine and in the midcoast. Some inland areas, including Kennebec County, have also experienced an upsurge in reported cases, a phenomenon that is consistent with ecological studies tracking changes in deer tick populations.

Lyme disease case surveillance is less useful for ascertaining the absolute numbers of cases that occur than it is for identifying disease differences and trends across time, space, and demography. In this regard, the data this year can be interpreted to suggest two things. First, a slow but persistent diffusion of disease risk is continuing to occur, both eastward and into south central Maine. Second, real cases do occur as a result of exposures outside of the hyperendemic south coast, and that tick bite prevention messages need to reach persons who live and work in or engage in recreation in any potential tick habitat across the state.
The risk of Lyme disease can be reduced by avoiding tick-infested areas, using insect repellents containing 20% -50%DEET (for skin and clothing), and permethrin (for clothing only), and by checking for ticks – and promptly removing them – after returning from tick-infested areas. Deer herd management, landscaping interventions, and improved recognition of erythema migrans and other early symptoms of Lyme disease, will also help to reduce the burden that results from this infection.

Prepared by:
Anthony K. Yartel, MPH
Geoff Beckett, PA-C, MPH
Anthony.yartel@maine.gov
http://www.MainePublicHealth.gov

EPIDEMIOLOGY and ECOLOGY  

Background:  Although the Maine Center for Disease Control and Prevention does not provide clinical consultation on the management of individual cases of Lyme disease, the Medical Epidemiology Section in the Division of Infectious Disease receives frequent requests from health professionals for Lyme disease-related information to assist in patient assessment and care. This Health Advisory includes answers to some of the more frequently asked questions that we receive, and is not intended in any way to be comprehensive. 

Summary: Maine has the 12^th highest rate of Lyme disease among the U.S. states and its incidence has been increasing steadily since the late 1990’s. While the majority of cases occur among residents of southern coastal Maine , medical providers should be aware that the range of deer ticks in Maine has expanded gradually in recent years and that exposure to deer ticks and Lyme disease can occur in other areas of the state as well.  Authoritative guidelines for the clinical diagnosis and management of Lyme disease and other tickborne diseases have been recently updated by the Infectious Diseases Society of America, and links are available at the Maine CDC website:  http://www.maine.gov/dhhs/boh/ddc/_lyme/lyme_1.htm 

FAQ: Lyme Disease in Maine  

1. Is the incidence of Lyme disease increasing in Maine ?

In Maine , the incidence of Lyme disease has increased steadily since the late 1990’s. In 2006, 338 reported cases were confirmed among state residents, an increase of 37% from 2005. While improvements in diagnosis and reporting may contribute to some degree, researchers and epidemiologists believe that there has been a real increase in disease incidence.  Similar increases were seen in some other New England states during the same period.  

2. What is the seasonality of Lyme disease in Maine ?

The great majority of cases of early Lyme disease have the onset of their symptoms during the summer months (June – August). A second, much smaller peak occurs in the fall (September – November), when adult deer ticks are active. Very small numbers of cases are seen during the winter and early spring (December – May). 

3. Where are the highest incidence rates in Maine ?

About two-thirds of reported Lyme disease cases in Maine are reported among residents of York and Cumberland Counties , with the highest rates in southeastern York County . Over the past decade the numbers of cases have also been increasing steadily in areas of the midcoast (Sagadahoc, Knox, and Lincoln Counties ) and in the lower Kennebec river valley. The numbers of cases are generally much lower in the western mountains and in northern Maine . This distribution is consistent with ecological research on the distribution of deer ticks in Maine . 

4. In what types of outdoor environments are deer ticks likely to be found?

“Potential tick habitat” is a term used to describe the type of environment preferred by deer ticks, and it includes woody or brushy areas and terrain with high grass and lots of leaf litter. 

5. Should I consider Lyme disease in the differential diagnosis of a person with compatible signs and symptoms (e.g., erythema migrans-like rash) whose only recent outdoor activities have been in a “low incidence” area of Maine , such as Aroostook County ?

Yes. Even in areas where deer ticks are relatively uncommon and the numbers of Lyme disease cases are low, small foci of tick populations may present some risk of Lyme disease exposure to humans. By the same token, there are many areas of “potential tick habitat” in generally high incidence regions – such as coastal York County -where ticks are absent or sparsely distributed. It is reasonable to assume that there is at least some risk of Lyme disease exposure for persons who engage in outdoor activities in any “potential tick habitat” in Maine , especially during the summer and fall.  

OTHER TICK-RELATED ISSUES 

6. Do deer ticks in Maine carry infections other than Lyme disease?

Yes. While Lyme disease is by far and away the most common tickborne disease, deer ticks in Maine can also occasionally transmit babesiosis and human granulocytic anaplasmosis (HGA). These are described in the IDSA Guidelines (reference in the summary section, above) and also on other areas of the Maine CDC website section on tickborne infections. A close relative of the deer tick (Ixodes cookei, also known as the “woodchuck tick”) can also transmit Powassan encephalitis, a rare viral infection closely related to West Nile virus. Four cases of Powassan encephalitis were documented here between 2000 and 2004. 

7. Do dog ticks in Maine transmit any diseases to humans?

In other areas of the country, dog ticks (Dermacentor variabili  can transmit rocky mountain spotted fever (RMSF). In Maine , however, neither RMSF or any other significant human diseases have been documented to be associated with exposure to dog ticks. 

8. Where in Maine can I send a tick to be identified?

The Maine Medical Center Research Institute (MMCRI) Vector borne Disease Laboratory in South Portland will identify the species of submitted ticks found on humans or pets. This is done free-of-charge. Ticks should be placed in alcohol in a leak proof container and sent to MMCRI per instructions that can be found at: (http://www.mmcri.org/lyme/submit.html). 

  DIAGNOSIS AND MANAGEMENT 

9. Is laboratory testing necessary to support a clinical diagnosis of erythema migrans (EM)?

No. Serological testing during the first 2 weeks of infection is too insensitive to rule out Lyme disease. Erythema migrans – the expanding rash that occurs within 3-30 days of tick removal or detachment in about 70%-80% of Lyme disease cases – often occurs before a serological response has occurred. Thus, treatment decisions should be made on the basis of a clinical diagnosis based on physical examination and history (see the 2006 IDSA Guidelines referenced above, for an excellent and well-illustrated overview of EM) and should not depend on laboratory testing for confirmation. Laboratory testing, however, is a critical and necessary component of the evaluation of persons with possible Lyme disease-associated signs and symptoms other than erythema migrans.  

10. What diagnostic tests are currently recommended for use in Lyme disease diagnosis?      

In the absence of erythema migrans, both the Federal CDC and the Infectious Diseases Society of America recommend the use of two-tier serological testing, that includes a sensitive screening test (ELISA or IFA) followed by IgM and IgG Western Blot testing, if the screening assay is positive. Clinicians should be wary of non-validated test methods used by some commercial laboratories, including polymerase chain reaction (PCR) testing of blood, urine antigen tests, and lymphocyte transformation tests. Some laboratories also interpret Western blot tests using criteria that have not been validated and published in peer-reviewed scientific literature (http://www.cdc.gov/mmwr/preview/mmwrhtml/mm5405a6.htm).  

11. Where can I find reliable guidance on current approaches to Lyme disease diagnosis and management?

The Infectious Diseases Society of America (IDSA) released its detailed update of clinical practice guidelines for Lyme disease and other tickborne infections in late 2006. These can be downloaded from the Maine CDC website (www.mainepublichealth.gov).  

PREVENTION   

12. Does early tick removal effectively prevent Lyme disease?

Yes. The removal of an infected deer tick within 36 hours of its attachment will prevent transmission in most cases.  Perhaps the most important component of Lyme disease prevention is performing daily tick checks after spending time in potential tick habitat, and removing any ticks that may have become attached.  

13.  What are the current recommendations for the use of tick repellents?

For application to uncovered skin, the federal CDC currently recommends the use of insect repellents containing a 20%-50% concentration of DEET for the prevention of tick bites. The American Academy of Pediatrics recommends that repellents containing up to 30% DEET can be used on children > 2 months of age. DEET concentrations in this range will provide protection for 5-8 hours against both ticks and mosquitoes. Data on the tick prevention effectiveness of picaridin, an effective alternative to DEET for prevention of mosquito bites, is currently limited. Permethrin, which is sold in spray and liquid forms, can be applied to shoes, socks and outer clothing (but not directly to skin), and kills ticks on contact. After an application, it will remain effective through several washings. It is also effective in preventing mosquito bites. 

14. How do I report a case of Lyme disease to Maine CDC?

 Lyme disease case reporting forms can be downloaded from the Maine CDC website and faxed or mailed to our office. Remember that it is especially important to report cases of clinically-diagnosed erythema migrans (EM), and that laboratory testing is not required to confirm a case of EM. 

15. What is Maine CDC doing to increase public awareness about Lyme disease prevention?

Although there is currently no dedicated federal or state government funding for Lyme disease education and prevention, Maine CDC has worked with community partners for several years doing this work within existing resources, including developing and disseminating educational materials, assuring that information on Lyme Disease is presented at some annual medical and public health meetings, and maintaining a website dedicated to tick borne diseases in Maine.  Maine CDC recommends that health education efforts utilize a “universal tick hygiene” approach that includes recognition of typical EM rashes, the proper use of insect repellents, and an emphasis on the importance of tick checks and early tick removal after work or recreation in tick habitat (whether or not it is in a high incidence area of the state).  Existing materials can be found and downloaded at www.mainepublichealth.gov.

Maine Support Group for Lyme

The largest increases in MA were seen in Suffolk, Norfolk, and Middlesex Counties. The majority of confirmed cases had onsets in June, July and August. The average age for a confirmed Lyme disease case was 39 years.  The highest reported incidence rates were among children aged 5-9 years and adults aged 60-64 years, and 35% of confirmed cases did not report an EM rash. 

As you can see, Lyme disease cases have been sharply on the rise in MA from 1990-2005:

Here is a further breakdown of Lyme cases in MA per county:

Given that the national average incidence is 8.24, you can see that MA has quite a high number of Lyme cases!

Local MA Resources

Lyme and Tick borne Disease Support Group for Teens on April 29 from 7-9 pm at St. Paul’s Church basement, 50 Union St., Hamilton, MA.  The support group is intended for teens ages 12-18.  For more information, please contact Kriste or James Brao at runkickski@comcast.net.

CONCORD MA will schedule Support Group sessions the fourth Thursday
of the month. The sessions are scheduled for 7 pm in the Concord Library, 129 Main
St., Concord and are open to those interested in sharing their
experiences, learning more about research and legislation, and
sources of information on the Internet. Contact Rose
at (978) 369-2396 Rose Ruze roseruze@verizon.net

=============

Cape Cod Lyme Support Group
Meets Once a Month on Sunday
(dates vary)
3-4:30 p.m. Church of the Covenant
Satucket Rd. in Brewster
Nancy: nbwood@comcast.net

===============

South Shore Lyme Support

southshorelyme@hotmail.com
Melissa Kerins
617-827-5805
(people are welcome to call me)
May 5 th
Special meeting starts at 6pm
 
June 2 nd
July 14 th
August 4th         These meetings  6:30-7:45 pm
Sept 1st
Oct 6th
Nov 3rd
Dec 1st
 
Plymouth county
(617)827-5805
Melissa Kerins
The location that the meetings will be held is the community room at:
Whitman Public Library
100 Webster Street
Whitman Massachusetts 02382
==============

For MA Support Contact:  
Mimi Winer at
508-358-5013

Worcester County
contact: Dawn at 978-597-2726
dgipa@yahoo.com

Plymouth MA
contact: Janet 508-866-9476

Islington, MA. 
contact: Linda at
Linda2lymehelp@aol.com
    Massachusetts Lyme Disease Coalition/
   Cape Cod Lyme Disease Awareness Association*
    John Coughlan
    Mashpee/Falmouth, MA
    (508) 563-7033                                                    

   Lower Cape LD Support Group*
    Brewster/Chatham, MA

   Outer Cape LD Support Group*
    Carolyn Tacke
    Truro, MA
    (508) 487-2720

   New Bedford Lyme Support Friends*
    Denise Chasse
    New Bedford, MA
    (508) 979-7859

   Westport-Fall River LD Support Group*
    Polly Emilitas, Janice Dey & Beth Herosy
    Westport, MA
    (508) 636-3184

   Westwood LD Resource Line*
    Maureen O’Brien R.N.
    Westwood, MA
    (781) 251-2521

   Boston Lyme Disease Resource Line*
    Kerry Kineavy, RN
    So. Boston, MA
    (617) 268-3767

    Central Mass. LD Family Resource Ctr*
     Eileen Johnson
     Webster, MA
     (508) 943-2692

    Western Mass. LD Resource Line*
     Marci Linker
     Florence, MA
     E-Mail:  Woodi16@aol.com

Epidemiology and Detailed Information

According to the latest statistics from the MA Department of Public Health, the areas of highest incidence are Cape Cod and Southeastern MA, Nantucket and Martha’s Vineyard, Essex County north of Boston, and towns along the Middlesex and Worcester county border, along the Quabbin Reservoir watershed, and in southern Berkshire County.  Recorder.com on July 30 reported that University of MA, Amherst, researcher Steven Rich, who has NIH grant to study ticks in MA, discovered a thriving population of deer ticks halfway up Mount Greylock, one of the coldest areas in the state. ”Deer ticks used to be limited primarily to a 15-mile zone along the coast of New England,” says Rich. ”Now they are moving much farther inland as they seemingly adapt to the cold.”

To understand the ramifications of the numbers, one needs to know that the CDC has indicated that only 10% of the cases that meet its surveillance criteria are actually reported,  so that means about 23,410 cases of Lyme disease that met the CDC surveillance criteria occurred in MA in 2005, and 233,050 Americans who fit the surveillance criteria developed Lyme disease nationally. No one is tracking the numbers of cases that do not meet the surveillance criteria, cases that are physician-diagnosed clinically and the ones that most often develop into chronic disease. Estimates range from 10-15 to 40% of Lyme cases develop into chronic disease (cases that have failed a standard treatment course and continue to be symptomatic). 

According to the CDC, the average annual incidence in the 10 highest states for the recent three-year period was 29.2 cases per 100,000 population, although the target of Healthy People 2010 was 9.7 new cases per 100,000 in the 10 states , researchers reported.  61% of the cases were children.

During the 2003-2005, CDC figures showed that 93% of the cases (59,770) in the country occurred in 10 endemic states: Connecticut, Delaware, Maryland, Massachusetts, Minnesota, New Jersey, New York, Pennsylvania, Rhode Island, and Wisconsin.  Lyme cases per 100,000 population in the 10 states went from 29.1 in 2003 to 31.6 in 2005. From 2003 to 2005, three counties nationally had annual rates above 300 cases per 100,000 population in all three years: Columbia and Dutchess Counties in New York and Dukes County in Massachusetts. 

Other tick-borne disease are on the rise in MA and nationally. MA Health Department figures show tularemia, 7 reported cases in MA; babesiosis, cases increased by almost 7 fold since inception of reporting in 1990; and ehrlichiosis, increased almost 5 fold since its 1997 reporting inception.  Considering many doctors do not look for these co-infections transmitted by the bite of the Ixodes scapularis (deer) tick that transmits Lyme disease, these numbers should trigger concern among MA officials.

In 2005, the Assembly held two public hearings to address the issue.  The first hearing, State House Health Chairman Koutoujian hosted a hearing in Ayer, MA.  The LDA was invited to be part of a public panel which heard hours of testimony from state residents on their experiences with Lyme disease.  LDA was asked to submit to Mr. Koutoujian a letter containing recommendations to the State of MA (copy included).  October 12, 2005, the Joint Massachusetts Legislative Committee on Public Health convened a more extensive hearing in Boston. Over 250 people attended.  The LDA was asked to provide a panel of doctor experts whose testimony was followed by hours of citizen testimony. Most testimony was personal stories on Lyme and the inability to be diagnosed or treated and going out of state to get treatment.  Many mentioned the lack of a definitive test and also lack of protection for treating physicians, and the refusal of insurance companies to reimburse when they were able to get treatment.

The following are bills introduced in the MA legislature in 2007 (note: LDA to sit on commission in H3883).
 
In January, H 3768, by Mr. Webster of Hanson, petition of Daniel K. Webster and Cleon H. Turner Promoting education and access to medical care for persons with Lyme disease; No physician is subject to disciplinary action by the board solely for prescribing long-term antibiotic treatment for a patient clinically diagnosed with Lyme disease, if this diagnosis and treatment plan is documented in the medical record for that patient. The department shall provide statewide Lyme disease education for physicians, schools and the general public, promote detection prevention and treatment programs for tick-borne diseases and work with graduate medical and nursing programs and establish an appropriate curriculum. It will perform cost-benefit analyses on insurance coverage of long term antibiotic care for Lyme disease patients; shall promulgate regulations for the lab detection of Lyme disease, for the state of art testing protocol and shall develop clinical provider training programs for the assessment and treatment of tick-borne illnesses.

A public hearing is scheduled for H3768 on September 12. The Chairwoman of the Cape & Islands Task Force named a special subcommittee to discuss this bill, seek input, and provide suggestions to the Health Committee at the scheduled Hearing.  This subcommittee meeting will be held on Sept. 6 in Barnstable.

FY 08 Budget Amendments Health & Human Services, EHS  782 COMPREHENSIVE LYME DISEASE STUDY:
Mr. Tarr, along with Mr. O’Leary, moved that the bill be amended, in Section 2, in item 4510-0600, by adding at the end thereof the following: “provided further, that not less than $75,000 shall be expended for a comprehensive study on Lyme disease.”

H3883: To create a special commission to investigate study of Lyme disease − $75,000 Funding. Study shall include the review of costs and benefits associated with(1) establishing a Massachusetts Center for Lyme Disease; (2) conducting a Lyme disease public health clinical screening study in high risk regions; (3) developing education materials and training resources for clinical providers and school health personnel for detecting signs and symptoms of tick borne illnesses in school aged populations.  Commission shall provide a report to legislative committees of the results of its investigation along with recommendations, if any, together with drafts of legislation necessary to carry its recommendations into effect no later than February 1, 2008.

(A language change took place circa July 24) The Amendment is now part of H3883 and the Hearing to Fund the Lyme Commission (above) has already been held. Representatives Callahan of Sutton, Hill of Ipswich, Koutoujian of  Waltham, Grant of Beverly, L’Italien of Andover, Garry of Dracut, Loscocco of Holliston, Webster of Hanson, Turner of Dennis move to amend the bill by adding the following section:

Representatives Callahan of Sutton, Hill of Ipswich, Koutoujian of Waltham, Grant of Beverly, L’Italien of Andover, Garry of Dracut, Loscocco of Holliston, Webster of Hanson, Turner of Dennis move to amend the bill by adding the following section: “SECTION __.  Resolved, that a special commission, to consist of two members of the senate, three members of the house of representatives, the commissioner of the department of public health or his designee, the commissioner of education or designee, the chancellor of the university of Massachusetts medical school or his designee, the director of the state laboratory institute or designee, the state epidemiologist or designee, and three persons to be appointed by the governor, one of whom shall be a representative of the Cape and Islands Lyme Disease Task Force, one who shall be a member of the Massachusetts Chapter of the International Lyme and Associated Diseases Society, and one who shall be a representative of the Lyme Disease Association is hereby established for the purpose of making an investigation and study of Lyme Disease.

HB 1081:The Commonwealth of Massachusetts petition of Theodore C. Speliotis 2007 AN ACT RELATIVE TO LYME DISEASE TREATMENT COVERAGE − mandatory insurance coverage for Lyme disease treatment.

In a survey of doctors throughout the country last year, researchers found 13,000 reports of Lyme disease. In a similar study in 1995, doctors reported about 6,500 cases, according to researchers at the National Institute of Public Health and the Environment (RIVM) and Wageningen University.

Lyme disease is an inflammatory disorder that can cause fever and chills, neurologic and cardiac complications and arthritis. Ticks that feed on infected deer, mice or dogs pick up the bacteria that cause Lyme disease. A bite from an infected tick can transmit the disease to humans.

People who play, live or work near large nature areas or forests face a higher risk of becoming infected with Borrelia burgdorferi, which causes the disease, Dr. Wilfrid van Pelt told Reuters Health.

The greatest increase in infections was seen in the generally rural provinces of Brabant, Limburg and North-Groningen. These provinces have also seen a rise in the numbers of people camping out–the report’s figures show a three-fold increase in the numbers of tourists visiting these areas.

“The most important thing is that many people have second homes next to nature preserves in these provinces,” van Pelt told Reuters Health. “People should recognize the signs of infection and check each other after walking in those kinds of areas.”

The infection first appears as a rash at the site of the tick bite, and an infected person can develop flu-like symptoms. If left untreated, Lyme disease may cause heart, joint and nervous system problems.

While 10 percent of people infected with the bacteria do not develop symptoms, care should always be taken after walking areas where ticks are known to carry the disease, van Pelt said.

“I think that what the government can also do to help is marking these areas and make the public more aware of the signs of infection,” he added.

Although ticks are found mostly in wooded nature preserves, the study also pointed out that high concentrations are seen in the sandy area of Veluwe in the eastern part of the country.

The report has been published on the Web site for the National Institute of Public Health and the Environment, www.rivm.nl.

One of the best known Lyme doctors in Holland is Dr. Fred Kuipers, http://www.kuipershealth.nl/. Reportedly, he has quite a long waiting list to see him.

From the LDA of PA, the following statistic is fascinating:

40% of all 848 residential households responded to the survey, representing 978 individuals who constitute ~30% of the entire township population. 47% of households had one or more individuals who currently have Lyme disease or had it in the past. Of the 948 individuals responding, 21% currently have Lyme disease or had it in the past. These returns surely indicate an epidemic of Lyme disease. There is good reason to think that these results do represent the entire Southeastern Pennsylvania region.

The first resource is the Lyme disease association of PA, http://www.lymediseasepa.com/, where you can get connected with local resources.

This organization also has a blog, which has updates on Lyme cases in PA: http://www.lymediseasepa.com/blog/

Another central support group is the LDA of Southeastern PA, http://www.lymepa.org/, which is a larger and more well-known support group.

From their website, here are local support groups who can help you get connected if you live in PA:

We know that some people can’t travel at night, or can’t make a particular meeting or are attracted to a special event within a reasonable driving distance. We hope this page will help bring the regional support groups in closer contact.

Updated Feb 22, 2009:

Bucks County and Lyme Disease Society Support Group
Meetings: 2nd Sunday of the month at 7:00 PM in the Doylestown Hospital Conference Room J, Doylestown, PA
 MapQuest Map =>   Director: Mary Halinski Email: lymesociety@aol.com

Cecil County Lyme and Associated Diseases Society Support Group
Cecil County Library, Elkton Branch, Elkton, MD 7:00 PM Next Meeting Details =>
Contact Judy Hart  jhart03@earthlink.net        Google Map

Central Pennsylvania Lyme Disease Support Group
Meetings: 7:00 PM, first Wednesday of each month at Evangelical Community Hospital, Conference Room D & E, Hospital Drive (Route 15) in Lewisburg, Pennsylvania. Directions => Our group coordinator is Larry Reese, telephone number 570-538-5600, his email address is lreese@chilitech.net.

Delaware Lyme Support has its own web site. Meetings are held in the Kirkwood Highway Library, the second Saturday of the month from 10:30 AM to 1:00 PM.. 
 http://www.delawarelymesupport.org   MapQuest Map

Harford County Maryland Lyme Disease Support Group has stopped monthly meetings For information: Call 410-838-LYME (5963) E-mail JGLYME@aol.com 
May 10, 2007 special meeting Details =>             MapQuest Map  

Lyme Disease Association of Eastern Shore Maryland meets in a NEW LOCATION, the Greater Salisbury Building across the street from the Wicomico Library in Salisbury, Maryland. Contact by E-mail: LymeDAESM@verizon.net
Google Map ==>      Next Meeting Details =>  

Lyme Disease Christian Support Group meets monthly at 7:00 PM in the Mt. Airy Bible Church, 16700 Old Frederick Rd. Mt. Airy, MD 21771 (In the upper sanctuary.)  Lyme Disease Christian Support Group web page  MapQuest Map

Mid-Shore Lyme Disease Association, Next meeting will be held after February 2007 in new location. Details will be posted here when we get them. Contact Linda Reilly at 410-822-3164 or Email  scenic@dmv.com

NYPenn Lyme Disease Support Group for North Central PA and South Central NY Meeting 7 PM on the second Monday of every month (even months) at the Millerton Wesleyan Church, RT. 328 Millerton, PA and on odd months at the First Congregational United Church of Christ, 171 West Pulteney Street, Corning, NY. [Mapquest map]  Contact Linda @ 570-537-6616  Email: jalmwales@npacc.net

Southern Delaware Lyme Support Group Meeting the first Friday of the month at the South Coastal Library 43 Kent Avenue in Bethany Beach, Delaware For information, call after 1:30 PM Monday thru Friday. Saturday and Sunday any time, and leave a message. Contact person: Debbie Lamb/Houston Email: justme_dj54@hotmail.com Phone #: 302-541-4623 
Google Map ==>

York Lyme Disease Support Group
Meetings continue to be held the 3rd Sunday of every month from 3-5 PM at Country Meadows (Shiloh) in York, PA. Our web site is: www.yorkpalyme.org and our email address is: yorkpalyme@yahoo.com . Contact Bob Stibitz at (717) 741-2473, Ruth Loucks at (717) 764-3212 or Jenn at (717) 225-6537 for more information.

UPDATE ON SUPPORT GROUP LOCATIONS AS OF 12/28/08:

Thanks,

Sue

Lyme Incidence by County

Here are cases of Lyme disease in PA by county, measuring the incidence of 1 case per 100,000 people:

Finally, here are some key facts on Lyme in PA:

In order to appreciate just how much Lyme disease is in New York per county, first look at these statistics which show Lyme disease incidence in the USA per state. Then, below, you’ll find the incidence of Lyme disease in NY, broken down by county. You will be amazed when you compare the statistics and see just how much Lyme is in New York, especially the highest counties.

If you would like more info on Lyme in New York, check out the New York Lyme Support Group moderated by Joseph Burrascano, M.D.:

http://www.lymenyc.org/

This map shows the incidence and statistics in New York, with red being the highest rates:

Since I grew up in California and have lived here my whole life (and probably also got my case of Lyme disease here), this article is very close to home for me. I searched for help for years in California before I found a proper diagnosis. Maybe this information can save you, or a loved one, the same trouble.

The Centers for Disease Control present Lyme disease statistics in terms of Lyme disease cases per 100,000 people. To give you an idea of the cases of Lyme on the east coast, here is a brief chart:

As you can see, the incidence hovers around 10-20, maybe 30, cases of Lyme per 100,000 on the east coast (please excuse the non-east coast states that got mixed in there – I didn’t want to waste precious vacation time being a perfectionist on the blog post).

So, given that “Lyme disease is an east coast disease,” you would expect that the cases of Lyme in California would be much less, right? Well, in some parts of the state this is true. However, in other parts, you will note that cases of Lyme are indeed quite high in parts of California.

When my wife and I first got our whippet puppy, we went to the coast of California and after walking around in the grass for a few minutes, the dog had about 40 ticks on her. And remember – whippets are VERY short haired dogs, very clean dogs, and this was only 5 minutes in the grass. You tell me – are you concerned about California? Make up your own mind!

Here’s the map:

FIGURE 5.
Lyme disease incidence per 100,000 person-years by zip code in California, 1993–2005. Wow! Parts of california with incidence of 20-50? That looks like the east coast, doesn’t it? And even a few places with incidence of greater than 50? Well, all I can say is that I DO live in California and I am scared!

Signing off from Monterey,

Bryan Rosner

State public health officials say they are surprised at how many ticks in New Hampshire are infected with Lyme disease.

The state already knew that cases of the disease were increasing, but Health and Human Services Commissioner Nicholas Toumpas said they were surprised to learn that more than half of the ticks sampled in Rockingham, Strafford and Hillsborough Counties tested positive.

http://www.bostonherald.com/news/national/northeast/view.bg?articleid=1085555&srvc=rss

What, have they been asleep for the last 10 years? Maybe when the government wakes up and smells the coffee, we will start to get better care for Lyme patients.

Until then, my strategy is as it has always been – if they won’t take care of us, we have no choice but to take care of ourselves.