Welcome to the Official Homepage of
Ticked Off and Fed Up, Inc.

T.O.F.U., Inc. standing for "Ticked Off and Fed Up," is a non-profit, 501(c)(3) charitable corporation formed to help victims of Lyme disease, support Lyme research, and spread awareness of its causes and prevention. Often, victims of long-term Lyme are unable to work and must wait two or three years to get proper disability coverage. In the meantime, their medical bills run into the many thousands of dollars, causing both financial and mental distress, which only further complicate the problem. Unfortunately, since the treatment of Lyme varies widely, insurance companies take the position that ALL long-term treatment "is experimental" and thus falls outside of their coverage.

MAY 6th TOFU MEETING - 2 SPEAKERS!!!

Dear Friends: PLEASE come to our Sunday, May 6th Meeting from 1 - 4 pm. We have 2 very interesting speakers who are interested in providing new venues for Lyme patients to both help themselves, and help others.

1. First, a company called SeraLife is intererested in our PLASMA!!! We've got a person who wants to use the plasma of lyme patients to sell to companies to find cures, vaccines, treatments, etc., and would pay for our services. The more people we could get at the Sunday, May 6th meeting, the better!!!! Those low on money, and high on Lyme that would like to take some out, COME AND FIND OUT THE DEAL!!

2. Second, we've got a very interesting company who has developed a new type of colloidal silver, which is nano-sized, and supposedly more beneficial as a result. They have used their product in Africa to fight AiDS and Malaria with apparent great success.

Finally, if you come, you may obtain a copy of our TOFU DVD for your support group, and/or to make as many copies as you'd like to distribute with your support group information. Our only contingency is that you copy the DVD in FULL. It's only 9 minutes long, and it's quite a wonderful product! Best of all, it is absolutely FREE!!!!

So PLEASE, COME TO OUR MAY 6th MEETING at the GETTYSBURG HOSPITAL COMMUNiTY ROOM on Washington Street from 1-4, and we will make it worth your while. We look forward to seeing you!!

LYME DISEASE and RELATED DISORDERS PAMPHLET AVAILABLE

TOFU, Inc. has received permission from pharmaceutical manufacturer Pfizer to reproduce and distribute a pamphlet entitled "Lyme Disease and Related Disorders". This pamphlet has been reproduced as a pdf and can be downloaded here.

Car Rally Information Posted

The information regarding the sponsorship/fundraising event "North Meets the South at Gateway Gettysburg Car Show" can be found on the Fundraisers section of the site. You can view this information by clicking on fundraisers in the navigation above or by clicking here.

TOFU, Inc. Forums Now Open

For information, questions and answers to all or any Lyme Disease or Related Disorder, or to talk to others with similar conditions and symptoms as you, please visit our forums here. (Registration is required to post)

BACKGROUND: LYME DISEASE IS A TERROR

Lyme disease is a devastating neurological & rheumatological disease, caused by a tick bite, which robs its victims of memory, and can leave them with an inability to form sentences. It leads to multi-system complications, including heart disease, joint swelling, fatigue, and a life of severe pain. In the midst of all this suffering, the medical community is ill-equipped to deal with the incapacitating disease, with victims often going to twenty or thirty doctors before a proper diagnosis is made. At that late stage, victims are often placed on long term IV therapy.

From the CDC.gov website: For surveillance purposes, a case of Lyme Disease (LD) is defined as physician-diagnosed erythema migrans (EM) >5 cm in diameter or at least one objective manifestation of late LD (e.g., musculoskeletal, cardiovascular, or neurologic) with laboratory confirmation of B. burgdorferi infection using a two-tiered assay. National, state, and age-specific incidence was calculated by using U.S. Census Bureau data for 2001 and 2002; incidence by county was calculated by using U.S. Census data for 2000.

In 2001, a total of 17,029 cases of LD were reported to CDC by 43 states and the District of Columbia, yielding a national incidence of 6.0 cases per 100,000 population. In 2002, the number of reported cases increased 40% to 23,763 cases, yielding a national incidence of 8.2 cases per 100,000 population. All states except Hawaii, Montana, and Oklahoma reported cases during 2002.

Twelve states reported an incidence of LD that was higher than the national average in both 2001 and 2002: Connecticut, Delaware, Maine, Maryland, Massachusetts, Minnesota, New Hampshire, New Jersey, New York, Pennsylvania, Rhode Island, and Wisconsin. These 12 states account for 95% of cases reported nationally.

During 2000--2001, LD case reports increased in 15 states, decreased in 26 states, and remained the same in nine states. During 2001--2002, LD case reports increased in 39 states, decreased in seven states, and remained the same in four states. Only one state, Arkansas, reported a decrease for both 2001 and 2002.

Counties reporting >15 cases accounted for >90% of all cases reported in both years. During 2001--2002, the number of counties reporting >15 cases increased from 123 to 151. In 2001, a total of 35 counties in seven states (Connecticut, Delaware, Massachusetts, New Jersey, New York, Pennsylvania, and Rhode Island) reported >100 cases. In 2002, a total of 53 counties in 10 states (i.e., the seven states from 2001 plus Maine, Minnesota, and New Hampshire) reported >100 cases. For both 2001 and 2002, the highest incidence of LD was reported from Columbia County, New York, with 1,026 and 1,583 cases per 100,000 population, respectively.

Combining data for both years, information on patient age and sex was available for 99% of patients. Patient ages ranged from <1 to 101 years and followed a bimodal distribution, with incidence peaks among children aged 5--14 years (9.9 cases per 100,000 population per year) and adults aged 50--59 years (9.2 cases per 100,000 population per year). Overall, 21,525 (53%) of 40,440 patients were male. Demographic features differed for states with above- and below-average incidence. Among 12 states with above-average incidence, the modal age of patients was 6 years; 54% were males. Among 38 states with below-average incidence, the modal age of patients was 44 years; 47% were males.

A total of 83% of reports for 2001 and 2002 had a date of illness onset provided. Patients were most likely to have illness in May (7%), June (28%), July (31%), or August (12%). Fewer than 7% were reported to have illness onset during December--March. Among 31,120 patients for whom at least one clinical finding was indicated, a history of EM was reported for 21,126 (68%) patients, arthritis for 10,126 (33%) patients, Bell's palsy for 2,510 (8%) patients, and radiculopathy for 1,009 (3%) patients. Meningitis, encephalitis, and heart block were reported in <1% of patients.

Editorial Note:

During 2002, a total of 23,763 LD cases were reported to CDC, more than in any previous year. Analysis of 2001 and 2002 data indicates that, as in previous years, most cases occur in northeastern, mid-Atlantic, and north central states, and the largest proportion of cases are reported among persons aged 5--14 years and 50--59 years. Factors potentially contributing to the increase in reported cases include growing populations of deer that support the Ixodes tick vector, increased residential development of wooded areas, tick dispersal to new areas, improved disease recognition in areas where LD is endemic, and enhanced reporting.

Surveillance for LD is subject to several limitations. Studies from the early 1990s suggested that LD cases were underreported by six to 12-fold in some areas where LD is endemic ; the current degree of underreporting for national data is unknown. In addition, differences in the demographics of reported cases among states with above- and below-average incidence suggest variation in diagnostic and reporting practices among states. Clinicians are reminded that the LD case definition was developed for surveillance purposes and might not be appropriate for clinical management of individual patients.

In February 2002, the only Food and Drug Administration--approved LD vaccine for humans was withdrawn from the market, reportedly because of poor sales. However, several other effective preventive measures remain available to persons living in areas where LD is endemic. Personal protective measures, such as repellent use and routine tick checks, are key components of primary prevention. Removing infected ticks within 48 hours of attachment can reduce the likelihood of transmission, and prompt antimicrobial prophylaxis of tick bites, although controversial, might be beneficial under certain circumstances. Exposure to ticks in peridomestic and recreational areas can be reduced 50%--90% through simple landscaping practices, such as removing brush and leaf litter or creating a buffer zone of wood chips or gravel between forest and lawn or recreational areas. Correctly timed applications of pesticides to yards once or twice a year can decrease the number of nymphal ticks 68%--100%. In addition to these interventions, several novel approaches to LD prevention are under investigation or will soon be available. These include bait boxes and "four-poster" devices that deliver acaricides to rodents and deer without harming them, and the use of biologic agents, such as fungi that kill Ixodes ticks. (source: www.cdc.gov)

Thank you for visiting! We hope that you enjoy our site!

Notice: The information provided here is for informational, educational and entertainment purposes only. It is NOT intended to replace, and should not be interpreted or relied upon as medical or professional advice. We are victims of tickborne illnesses, and any advice from those in the medical profession are given as advice from their perspectives as patients themselves, and/or from treating a large number of patients, but NOT as medical advice. Your reading and/or using any information from this site means that you agree to the terms and conditions detailed in this disclaimer.

Copyright © 2000-2006 Ticked Off and Fed Up, Inc., a 501 (c) (3) charity. All Rights Reserved.
2389 Chambersburg Road • Biglerville, PA 17307 • 717.334.6339 • FightLyme@yahoo.com