First Five Critical Steps to Dealing with a New Lyme Disease Diagnosis



A new diagnosis of any chronic disease can be fraught with apprehension and confusion for patients. For those diagnosed with Lyme disease, these feelings are often further intensified by the mystery of the disease itself, and by the lack of consensus in the medical community about diagnosis, treatment and management. However, Time for Lyme, an advocacy, research and support organization dedicated to eradicating Lyme and other tick-borne diseases, recommends five first steps newly-diagnosed patients can take that will help them and their health care providers better manage the disease -- both immediately, and over the long term.

"For the vast majority of newly-diagnosed Lyme disease patients, the questions they have frequently outnumber the answers that science and medicine can provide, which can leave them baffled and afraid," explains Diane Blanchard, co-founder and president of Time for Lyme. "However, well-researched guidelines and recommendations have been established over the past several decades that can help patients -- particularly those who have just been diagnosed -- to begin the physical and psychological process of disease management," Blanchard adds.

First Five Steps to Dealing with a Lyme Diagnosis

Blanchard and Time for Lyme co-founder Debbie Siciliano recommend the following five steps for new Lyme disease patients. "Accomplishing these five objectives helps patients to create a sense of control over the illness," Siciliano notes.

1. Find out more: The first step, Blanchard and Siciliano agree, for a patient is to confirm their diagnosis and learn as much as they can about it. "Remember, too, the tests are not completely accurate resulting in frequent false negative and positive results," Siciliano stresses. Patients who have been told they do not have Lyme disease despite a host of common symptoms (tick bite, "bullseye" rash, fatique, joint pain and/or neurological problems) should seek resubmission of their bloodwork to another laboratory, re-drawing and retesting the serum, and/or another medical opinion. Patients should ask their physician to use both the ELISA and Western Blot tests. (If your insurance company will only pay for one test, you should consider paying for the other test yourself.) Often times, Lyme disease is a diagnosis of exclusion because the tests are so unreliable. Your doctor might explore many other possibilities while looking for Lyme disease in order to rule out every possibility. Blanchard suggests documenting your rash (by taking a photo of it), tick bite or symptoms.

Patients who have received a positive diagnosis should request their blood be tested immediately for co-infections such as Babesia, Ehrlichia, Bartonella and Mycoplasma. "An increasing number of ticks have been found to carry and transmit these other infectious agents, and the tests and treatments for some of these infections are different than those for Lyme disease," Blanchard notes. Also, ask that your blood be sent to at least two different labs for an independent confirmation of your diagnosis.

2. Find support: An increasing number of Lyme disease support groups are forming across the country to help patients deal with the effects of Lyme, and to connect them with others who might be able to share insights and information. Begin searching for these groups through local, regional and national Lyme disease advocacy organizations, such as Time for Lyme (www.timeforlyme.org) or the Lyme Disease Association (www.lymediseaseassociation.org).

3. Find information: In addition to these Web sites, patients should reach out to the medical community and to centers that are conducting research into Lyme disease. Time for Lyme and the LDA recently funded the opening of the Lyme & Tick-Borne Illness Research Center at Columbia University in New York; visit www.columbia-lyme.org. The International Lyme and Associated Diseases Association (ILADS) can be found at www.ilads.org and the Center for Disease Control and Prevention (CDC) can be found at www.cdc.gov.

4. Find a Lyme literate physician if necessary: Because of the current controversy surrounding the treatment of Lyme disease, physicians' treatment and management approaches can vary widely. If you continue to have symptoms after your initial treatment and your physician is unwilling to provide further treatment, consider consulting with another physician who understands the multi-systemic nature of this disease. Check with advocacy groups, other Lyme patients and medical centers for referrals to doctors who take a broader view of potential treatment protocols.

5. Find time: Finally, Blanchard and Siciliano stress the critical importance of patients becoming their own best health care advocate. To begin, compile a complete medical history and file that details any past or current conditions, problems and medications (OTC and prescription). In addition, updating the file to include Lyme-related symptoms (onset, duration and relief), test results, diagnostic procedures and any other relevant information will be of value to treating physicians and other healthcare providers. "Patients should update their files consistently as they receive new information or experience new symptoms," Blanchard concludes.

Lyme disease is one of the fastest-growing chronic diseases in the U.S., with more than 23,000 diagnoses in 2005 -- up from just over 8,000 in 1993. The Centers for Disease Control & Prevention (CDC) estimates that diagnoses make up just 10% of actual cases, suggesting that more than 230,000 Americans may be infected.

About Time for Lyme

Time For Lyme is an organization dedicated to eliminating the devastating effects of Lyme disease and other tick-borne illness. Our mission is to prevent the spread of disease, develop definitive diagnostic tools and effective treatments, and to ultimately find a cure for tick-borne illness by supporting research, education, and the acquisition and dissemination of information. In addition, we will continue to act as advocates for Lyme disease sufferers and their families through support of legislative reform on the federal, state and local levels. For more information on our organization, please visit www.timeforlyme.org.





First Five Critical Steps to Dealing with a New Lyme Disease Diagnosis