Resources For Patients Archives - Colorado Tick-Borne Disease Awareness Association (COTBDAA)

Research Study Recruitment: Congenital Lyme Disease

December 31, 2023

Blog, Lyme Disease, Resources For Parents & Children, Resources For Patients, Resources For Providers

[vc_row][vc_column][vc_column_text] Pregnant participants needed for study! Children’s National Hospital – Congenital Infection Program has launched a pilot study being led by Sarah Mulkey, MD, PhD, “Pregnancy and Early Neurodevelopmental Outcomes Following In Utero Lyme Disease Exposure.” [perfectpullquote align="left" bordertop="false" cite="" link="" color="" class="" size=""]The study is actively recruiting pregnant volunteers to participate in questionnaires, one fetal MRI and ultrasound, one infant MRI and ultrasound, two in-person neurology evaluations, and two blood draws.[/perfectpullquote] This study will assess the feasibility of evaluation for outcomes of pregnancies of women affected by Lyme disease infection. Brain development of fetuses, infants, and children exposed to Lyme disease in utero will be assessed. Infants will be followed from birth to age 18 months. Study participants will be reimbursed for their travel up to 230 miles each...

Congenital Lyme Lyme Lyme disease Pregnancy Study recruitment

What Should You Know As A Patient?

November 6, 2016

Resources For Patients

[vc_row][vc_column][vc_column_text] What should you know as a patient? Be Tick Aware! Many victims of tick-borne diseases never recall being bitten. Ticks secrete an anesthetic-like substance in their saliva that numbs the skin, so that you may not feel the bite. The size of some ticks that can transmit disease are as small as a poppy seed or the period at the end of this sentence. Ticks can be easily missed even with frequent tick checks. Ticks that cause Tick-Borne Relapsing Fever in Colorado and other western states often feed at night while their victim sleeps in rodent infested or previously rodent infested buildings. Unlike the more common hard-bodied ticks, these "soft-bodied ticks" feed quickly and then retreat (much like a bed-bug); people may not even know they...

Signs and Symptoms of Tick-Borne Disease

November 6, 2016

Resources For Patients, Resources For Providers

[vc_row][vc_column][vc_column_text] Signs and Symptoms of Tick-Borne Disease There over 20 tick-borne diseases/conditions currently known to occur throughout the US and many of these diseases have impacted Colorado residents and/or their pets. As a rule, the sooner a tick-borne disease is properly diagnosed and treated, the better! Lack of timely, accurate, diagnosis and treatment can result in adverse outcomes for patients including extended treatment, hospitalization, disability or death. Tick-borne illnesses may manifest in vague, classic or dramatic and unusual presentations. Many of the tick-borne infections can initially present as a flu-like syndrome that are often misdiagnosed as viral other illnesses. Initial symptoms common to many tick-borne diseases are often flu-like and may include: Fever (may be high and/or relapsing in nature) Chills Sweats Rashes (multiple presentations) Headache Stiff neck Muscle-aches Fatigue Nausea/vomiting For more information regarding the...

Diagnosing Tick-Borne Disease

October 28, 2016

Resources For Patients, Resources For Providers

[vc_row][vc_column width="2/3"][vc_column_text] Diagnosing Tick-Borne Disease There over 20 tick-borne diseases/conditions, currently known to occur throughout the US and many of these diseases have impacted Colorado residents and/or their pets. Lyme disease is the most reported tick-borne disease and has been reported in all of the 50 United States. Companion Animal Parasite Council reports increasing numbers of Lyme disease, Anaplasmosis and Ehrlichiosis in dogs nationwide and in Colorado. The sooner a tick-borne disease or condition is properly diagnosed and treated, the better. Lack of timely, accurate, diagnosis and treatment may result in adverse outcomes for patients of tick-borne diseases/conditions including extended treatment, hospitalization, disability or death. Awareness of potential tick exposures, as well as awareness of the signs and symptoms of the multiple and variable diseases/conditions and the limitations of laboratory testing is critical...

Patient Testing

November 6, 2016

Resources For Patients, Resources For Providers

[vc_row][vc_column][vc_column_text] Testing for Tick-Borne Disease Testing for tick-borne diseases is variable in both availability and reliability depending on the infection. Often patients may require treatment before laboratory tests can return a confirmation of disease. For some diseases, commercial tests are not yet available or diagnosis may depend on the experience of the pathologist reviewing a blood slide or tissue sample under a microscope. For others, antibodies may never develop to levels able to be detected by current testing methods. If you realize that you have been bitten by a tick and you have saved the tick, you may want to have your tick tested. Specialized testing laboratories offer some of the most sensitive and specific tests for many tick-borne diseases, however some diseases are still without reliable laboratory...

Treatment Guidelines

November 6, 2016

Resources For Patients, Resources For Providers

[vc_row][vc_column][vc_column_text] Treatment Guidelines For some tick-borne diseases and conditions, treatment guidelines are well established for successful outcome. For others, recommended treatment guidelines are varied, disputed, or even non-existent. For information regarding individual disease treatment recommendations visit tick-borne diseases. Two Standards of Care for Lyme Disease: Two standards of care in regard to Lyme and other other tick-borne diseases has resulted in difficulty for both providers and patients to navigate diagnosis and treatment. This divide has resulted in a lawsuit filed in 2017 on behalf of Lyme disease patients who say they have been denied care and harmed under existing insurance and medical protocols. ILADS (International Lyme and Associated Diseases Society) Guidelines 2014 IDSA (Infectious Diseases Society of America) Guidelines 2020 The main difference between the guidelines of the IDSA and those...

Tick Testing & Identification

November 6, 2016

Prevention, Resources For Parents & Children, Resources For Patients

[vc_row][vc_column][vc_column_text] Save the Tick! You may wish to save the tick for identification or testing. Identification and testing of ticks cannot determine if transmission of a disease has or has not occurred, however knowing which species of tick you have been bitten by, what pathogens they may be carrying, and in which region of the country you were exposed may aid in your discussions with your medical care provider regarding diagnosis and treatment considerations. Remember NO testing is 100% reliable! Negative results do not necessarily mean no disease transmission. Ticks may carry pathogens for which tests are not yet commercially available. Never wait on results of tick testing to see a doctor, especially if experiencing any signs of illness. Never ignore signs of illness even if tick test...

Doctor Referral

January 29, 2017

Lyme Disease, Resources For Parents & Children, Resources For Patients

[vc_row][vc_column][vc_column_text] Doctor Referral Finding a physician or medical care provider that is experienced at recognizing, testing, diagnosing and treating Lyme and other tick-borne diseases is often difficult in Colorado as well as other parts of the country where the prevalence of disease is not highly reported. Acute symptoms of many of the tick-borne diseases may be vague and flu-like and are easily misdiagnosed by primary care or ER physicians as flu or other viral illness. Because there are no CDC reported cases of Lyme or many co-infections known to have originated from Colorado (all reported cases are presumed to have been contracted in other states), doctors may be inexperienced about the diseases or are hesitant to test for diseases if a person does not have a recent history of travel to...

Financial Assistance

January 28, 2017

Lyme Disease, Resources For Parents & Children, Resources For Patients

[vc_row][vc_column][vc_column_text] Financial Assistance Diagnosis, testing and treatment for Lyme and other tick-borne infections are expenses often not covered by insurance. These financial burdens are frequently devastating to individuals or families dealing with these diseases and can make access to care unaffordable or even impossible for some. Below are a few resources for financial assistance:[/vc_column_text][/vc_column][/vc_row][vc_row][vc_column width="1/3"][vc_single_image image="983" img_size=""][/vc_column][vc_column width="2/3"][lvca_spacer][lvca_spacer][vc_column_text] Lyme Disease Association LymeAid4Kids Lyme Disease Association, Inc., 501(c)3, non-profit, provides financial support through the LA4K fund for children and young adults (under age 21) who need diagnosis and treatment, but lack insurance coverage. They have awarded grants to hundreds of children since 2004.[/vc_column_text][/vc_column][/vc_row][vc_row][vc_column width="1/3"][vc_single_image image="4164" img_size=""][/vc_column][vc_column width="2/3"][lvca_spacer][lvca_spacer][vc_column_text] LivLyme Foundation livlymefoundation.org Olivia is a courageous young Coloradan that started the LivLyme Foundation, 501(c)3 non-profit to raise money for children that cannot afford their Lyme medication...

Patient Support

January 28, 2017

Lyme Disease, Resources For Parents & Children, Resources For Patients

[vc_row][vc_column][vc_column_text] Patient Support Those impacted by the effects of Lyme and other tick-borne diseases are often faced with a lack of understanding and support. This may come from friends, family, co-workers, or physicians that don’t understand the complexities or the impacts that many of these illnesses may have on an individual or family. This lack of understanding makes an already difficult illness even harder to cope with. Some Coloradans are quickly diagnosed and effectively treated, experiencing no further complications from Lyme disease. Others are among the estimated 10-30% who experience ongoing complications from a Lyme infection – even after antibiotic treatment. Living with Lyme disease is not easy. Some people experience chronic fatigue, headaches, and joint or muscle pain. Others have cognitive difficulties leaving them unable to continue working or safely drive a...

Additional Resources

Lyme Disease

Babesiosis

Anaplasmosis

Heartland Virus

Colorado Tick Fever

Borrelia miyamotoi

Ehrlichiosis

Powassan Virus

Rickettsia

Rocky Mountain Spotted Fever

Tularemia

Tick Borne Relapsing Fever

STARI

Pacific Coast Tick Fever

Bourbon Virus

Bartonella

Q-Fever

Tick Paralysis

Prevention!

Resources For Patients