Printable List of Lyme Disease Symptoms and Signs

LDA Symptom ListLyme disease is a Multi-Systemic Disease caused by the bacteria called Borrelia burgdorferi (Bb) which normally is a bacterial spirochete (spiral) shape. General Early Lyme disease Symptoms & Signs: Erythema Chronicum Migrans (EM) also called the Bull’s Eye Rash, at bite site. Rash only found in 50% of patients.  Other Types of Rashes anywhere on the body (rash at other than bite site signals disseminated disease). Fever & Flu like Symptoms/Illness.

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Lyme disease is a Multi-Systemic Disease caused by the bacteria called Borrelia burgdorferi (Bb) which normally is a bacterial spirochete (spiral) shape. Lyme Disease Symptoms

General Early Lyme disease Symptoms & Signs :
The Erythema Migrans (EM) rash is only found in 50% of patients at the site of the bite.  The classic bulls eye rash is a type of EM rash that has a central clearing and is found in about 9% of cases.  Some patients have no rash at all.  Other types of rashes anywhere on the body – signals disseminated disease. Fever & Flu like Symptoms/Illness.

Musculoskeletal: joint pain or swelling or stiffness, muscle pain, shin splints, neck or back stiffness, migrating muscle pain or cramps, TMJ, neck creaks & cracks, tender soles.

Reproductive: testicular pain/pelvic pain, menstrual irregularity, unexplained milk production (lactation), sexual dysfunction or loss of libido.

Cardiac/Pulmonary: Chest pain or rib soreness, shortness of breath, heart palpitations, pulse skips, slow pulse, heart block, heart murmur, valve prolapse.

Neurological: muscle twitching, headache, tingling, numbness, burning or stabbing sensations, facial paralysis (that looks like Bell’s palsy), dizziness, poor balance, increased motion sickness, light-headedness, wooziness, difficulty walking, tremor, confusion, difficulty thinking/concentrating/ reading, forgetfulness, poor short term memory, disorientation (getting lost, going to wrong place), difficulty with speech, double or blurry vision, eye pain, blindness, increased floaters, increased sensitivity to light or sound or smell, buzzing or ringing in ears, ear pain, decreased hearing or deafness, difficulty swallowing, seizure activity, white matter lesions, low blood pressure.

Neuropsychiatric: mood swings, irritability, depression, disturbed sleep (too much, too little, early awakening), personality changes, Obsessive Compulsive Disorder (OCD), violent outbursts, paranoia, panic/anxiety attacks, hallucinations.

Gastrointestinal: Nausea or vomiting, difficulty eating, change in bowel function.Constipation, diarrhea, gastritis, abdominal cramping, irritable bladder or bladder dysfunction, cystitis.

Other: fever, sweats, or chills, weight change (loss or gain), fatigue, tiredness, hair loss, swollen glands, sore throat, difficulty swallowing, swelling around the eyes, & swelling in feet.

 

© Lyme Disease Association, Inc. 2000, 2009, 2013 Revised: 2017




You Can Make A Difference to a Child by Reducing Risk of Lyme Disease – NASN Sch Nurse

Featured in the updated 2019 The ABC’s of Lyme Disease – 

You Can Make A Difference to a Child by Reducing Risk of Lyme Disease
Network to Reduce Lyme Disease in School-Aged Children, Washington, DC

Click here for link to full article

NASN Sch Nurse. 2010 May;25(3):110-3.

Abstract: Early detection is critical since you are on the front lines when educating school staff and students. You, as the school nurse, can make a huge difference in a child’s life by providing guidance on Lyme disease prevention, detection, and treatment to your school staff, as well as the parents of the community




Asbury Park Pr: Big news for chronic Lyme sufferers

With the help of Rep. Chris Smith and a Wall advocate, the House passed breakthrough legislation on the hot-button issue.Smith Head

For decades, Wall resident Pat Smith has implored the medical establishment to acknowledge the existence of chronic Lyme disease. On Wednesday, her quest took a big step forward.

The House of Representatives passed the 21st Century Cures Act, a comprehensive health care bill that would establish a national working group on Lyme disease. The 14-member panel would include physicians with experience in treating tick-borne diseases, Lyme patients and advocates for those suffering from the condition.  “This is really groundbreaking,” said Smith, president of national nonprofit Lyme Disease Association in Wall. “Prior to this we’ve never had anything at the federal level that permitted patients to be at the table with federal officials. It’s desperately needed.”

Lyme disease affects nearly 400,000 people per year in the U.S., most of whom live in the northeast. For many who are diagnosed promptly, the standard month-long course of antibiotics mitigates the illness. But detection is difficult, and for thousands of folks, the symptoms continue for months or years.

To date, the influential Infectious Diseases Society of America has declined to recognize chronic Lyme in its clinical practice guidelines. Chronic Lyme advocates say that omission has caused a domino effect of needless suffering.

Representative Chris Smith (R-4th) has been pushing for a federal panel to address the issue since the early 1990s. The Senate is expected to pass the Cures Act, which got through the House by a vote of 392-26, in the coming days.

“Many have suffered for decades with this debilitating disease, only to be told that their illness does not exist,” Chris Smith said in a statement. “Enactment of the Cures package will move us one step closer to acknowledging and addressing the root problems of chronic Lyme.”

The issue was first brought to Rep. Smith’s attention by Pat Smith. In the late 1980s Lyme disease afflicted two of her daughters, one of whom missed four years of school. For years, she and Chris Smith (no relation) worked in vain to get federal recognition of chronic Lyme.

“The continued dissemination of outdated guidelines . . . has contributed to medical community’s denial of chronic Lyme disease and the denial of coverage by insurance companies of treatments for chronic Lyme disease,” Smith told the Asbury Park Press in a wide-ranging interview on the subject in May.

New Jersey ranks second among all states in Lyme cases, with 4,855 reported in 2015. Since the condition is known to be under-reported because it can be difficult to detect, the actual number of cases in the Garden State is believed to be closer to 50,000.

“Having knowledgeable people at the table will put the focus on the research, and there is a huge amount of brand-new research that shows there are (Lyme) cells that are left over after regular treatment,” said Pat Smith, who was involved in drafting the language establishing the working group. “This may be the root of the problem.”

In addition, she said, the Cures Act “will cause these federal agencies to have to talk about all of this in public.”

For both Pat and Chris Smith, it marks a victory after prior attempts to create a national task force were rejected.

“My original legislation ensured the individuals impacted by federal policies would have a seat at the table when the decisions are made,” Chris Smith said. “It has taken many years and several drafts, but thankfully today’s Cures package includes similar language that will begin the process of addressing the great unmet needs in the Lyme community in an open and transparent manner.”

For more information on the Wall-based Lyme Disease Association, visit www.lymediseaseassociation.org.

Staff writer Jerry Carino: jcarino@gannettnj.com

Please take time to go to article and post a comment

(Asbury Park Press 12/1/16, Jerry Carino)




Lyme on Agenda at Women in Govt. Conference

2016 MLDSE Deb Pat Paula WIG loMaine State Rep. Deb Sanderson; LDA President, Pat Smith; and Paula Jackson Jones, President of MLDSE at the Women in Government conference, Sept 30th, 2016LDA President Pat Smith has been invited by the Women In Government Foundation, Inc. (WIG) to speak at its 17th Annual Southern & 18th Annual Eastern Regional Conference (9/29-10/1) in Bar Harbor, Maine. WIG, Washington, D.C., “is a national, non-profit, non-partisan organization of women state legislators that provides leadership opportunities, networking expert forums, and educational resources to address and resolve complex public policy issues to all 1,783 women state legislators.http://www.womeningovernment.org/about-us

On the WIG agenda for September 30, in a session entitled, “How to Reduce Negative Impact of Lyme Disease,” Ms. Smith will discuss issues related to Lyme which could benefit state legislators across the country in their in their decision making. http://www.womeningovernment.org/sites/default/files/documents/events/2016SouthernEasternRegionalConference-Publicagenda.pdf

The LDA President will be part of the Lyme panel speaking at the conference which also consists of Beatrice M. Szantyr, MD, Internal Medicine, Pediatrics & Adolescent Medicine and Paula Jackson Jones, President, Midcoast  Lyme Disease Support & Education, a partner with the Lyme Disease Association LDAnet Umbrella group.

Ms. Smith has been twice invited to speak at the Midcoast Lyme Disease Support & Education public Lyme conference held in Maine, and both times, a number of state legislators were present at the well-attended conferences.  Maine State Representative Deborah J. Sanderson (R-Chelsea) approached the LDA President at the most recent event about possibly speaking at the WIG conference and followed up through Paula Jackson-Jones of MidCoast who has coordinated with the legislator.

2016 Women in Govt Maine lowMaine State Rep. Deb Sanderson; LDA President, Pat Smith; Paula Jackson Jones, President of MLDSE; Constance Dickey; and Beatrice M. Szantyr, MD, Internal Medicine, Pediatrics & Adolescent Medicine at the Women in Government conference, Sept 30th, 2016

 




Asbury Park Press: Rep. Chris Smith on Lyme ‘Culture of Denial’

Asbury Park Press recently featured an article by Jerry Carino: Rep. Chris Smith on Lyme disease ‘culture of denial,’  a Q&A with the  congressman, who has crusaded for Lyme disease research and formal recognition of chronic Lyme.The article highlights the congressman’s Smith at podiumU.S. Representative Chris Smith (NJ-4) Lyme legislation victories and new initiatives. Although Smith is encouraged by “the beginning of a sea change in the attitudes of the federal officials who are responsible for coordinating the Lyme disease initiative,” he speaks about “the culture of denial that exists surrounding the prevalence and toxicity of Lyme — exacerbated by the fact that the Infectious Disease Society of America (IDSA) definition precludes chronic Lyme, contrary to significant evidence, patient experience, and clinician testimonials.”

Congressman Smith began his crusade for Lyme disease when he met Pat Smith (Lyme Disease Association President) in 1992, and she asked him to get involved. Congressman Smith shares the feedback he has received by his constituents and the Lyme community over the years, including patients’ misdiagnoses and lack of treatment creating more serious symptoms, the continued suffering of Lyme patients after their initial round of antibiotics, and the fact that they are told chronic Lyme doesn’t exist. The results are demoralizing, and patients in addition can face financial ruin due to medical costs that are not covered by insurance companies influenced by the outdated IDSA guidelines.    

Click here to read the full article

Click here to read Pat Smith’s Letter to the Editor – “True threat of Lyme disease finally emerging”




Interactive US Map & Analyses of CDC Reported Lyme Disease Cases

The LDA has prepared valuable tools to distribute to educators, medical professionals and legislators.




What Is Lyme Disease – How Can You Protect Yourself & Your Family

This section provides valuable information on the many aspects of Lyme and tick-borne diseases.




Senate Hearing on Lyme Disease

US Senator Richard Blumenthal (CT) held a 2 hour offsite HELP (Health, Education, Labor, & Pensions Committee) full committee field hearing – Lyme Disease: A Comprehensive Approach to an Evolving Threat – in Stamford, Connecticut, on August 30, 2012 . Several panels of individuals testified and everyone attending the hearing in the audience was invited to submit testimony, which then became part of the hearing record. 

Click here for Senator Blumenthal’s website – view hearing video, transcript and witness testimonies

 

Click here for Pat Smith submitted written testimony

 

Click here for media report in StamfordAdvocate.com.

2012-08 Blumenthal HearingGrpShot




LDA Position on IDSA 2006 Lyme Disease Guidelines

The new IDSA guidelines published in October by the Infectious Diseases Society of America (IDSA) are already causing patients to be denied treatment for chronic Lyme disease. The guidelines have recommended against any long term treatments, listing numerous specific antibiotic classes not to be given, listing alternative treatments and even supplements not to be offered to Lyme patients. Clinical discretion has been removed from treating physicians. We ask that you, your families, and friends across the country sign this petition immediately. Lyme treatment is at stake.


We, the undersigned, are gravely concerned by the new Infectious Disease Society’s (IDSA) guidelines on Lyme disease. These guidelines call for absolute reliance upon either the presentation of an Erythema migrans rash or positive serologic blood tests to diagnose Lyme disease and recommend severely limited courses of antibiotic treatment when either a rash or a positive test are present. They take the place of a longstanding policy of deference to the clinical discretion of the treating physician in both diagnosing and treating the disease. We find it most troubling that the new IDSA guidelines fail to explain the scientific justifications for their absolute reliance upon the rash and current blood testing to diagnose the disease in light of the numerous studies and medical opinions concluding that the rash is either not discovered by or present in many infected persons and that the serologic testing methods recommended by the IDSA are inherently unreliable because they do not even remotely approach a dispositive level of accuracy. Widespread adoption of these guidelines by practitioners, insurers, and government entities will, therefore, cause real and egregious harm to many patients by inhibiting physicians who otherwise would be free to clinically diagnose and treat this disease.

These guidelines fail to meaningfully address the needs of patients with chronic Lyme disease, who are now relegated to the pile of diseases with unknown etiology, like CFS and FMS, and who are provided with only symptomatic relief, while the underlying infectious disease is allow to progress unabated. Studies have shown that patients with chronic Lyme disease suffer a degree of debility equal to that of patients with congestive heart failure. Failure to address the underlying infectious disease etiology keeps these patients sick, which is inhumane and immoral. There are no chronic Lyme disease patient studies supporting symptomatic therapies, which presumably would be necessary for life at considerable cost to insurers and society. Moreover, the IDSA rejected out-of-hand the requests by patients and their treating physicians to participate in the guideline development process. No medical society should be able to dictate patient healthcare through exclusionary guidelines that ignore considerable scientific evidence and fail to meet the basic goal of medicine-to improve the quality of life of the patient.

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Deaths from Lyme Disease

Lyme disease can cause deaths. The chart below shows numbers of deaths from Lyme disease and from Rocky Mountain spotted fever (RMSF) (link to our RMSF page), another tick-borne disease considered to be very serious. The numbers are taken from the Centers for Disease Control and Prevention for the years 2002 through 2007.