NEWS: New ILADS Lyme guidelines promote options and informed choice
LymeDisease.org has endorsed the new Lyme disease guidelines published by ILADS, calling them “both evidence-based and patient-centered.”
Los Angeles, CA (PRWEB) August 05, 2014:
Too many patients fail the standard treatments for early Lyme disease. Today LymeDisease.org, a leading national patient advocacy nonprofit, endorsed new guidelines published by the International Lyme and Associated Diseases Society (ILADS). LymeDisease.org Executive Director Lorraine Johnson, JD, MBA, was an author and patient member of the ILADS guidelines panel. “The guidelines are both evidence-based and patient-centered,” Johnson said.
The full guidelines, “Evidence Assessments and Guideline Recommendations in Lyme disease: The Clinical Management of Known Tick Bites, Erythema Migrans Rashes and Persistent Disease” were published online today in the August 2014 issue of Expert Review of Anti-infective therapy and are available free access.
The Centers for Disease Control and Prevention (CDC) estimates that more than 300,000 people contract Lyme disease each year. People with Lyme and related tickborne diseases frequently experience long delays in obtaining an initial diagnosis, have poor access to healthcare and suffer a severe burden of illness. Those who are not diagnosed early have a worse prognosis; many become chronically ill.
Focusing on how best to reduce the risk of developing chronic illness, the new ILADS Lyme guidelines target how to treat tick bites, Lyme rashes and persistent disease. Johnson noted that because the evidence base is poor, there is a strong need for clinical judgment and shared decision-making with patients: “Many of the treatment decisions in Lyme disease depend on trade-offs. To make informed medical choices patients need to understand the risks and benefits of treatment options. These guidelines provide that information,” Johnson said.
The ILADS Lyme guidelines were developed over a three-year period and reflect the latest science. They are the first Lyme guidelines to use a rigorous systematic evidence evaluation approach called GRADE (Grading of Recommendations Assessment, Development, and Evaluation). GRADE has been adopted by other prominent medical organizations including Cochrane Collaboration, the World Health Organization, and the National Institutes of Health. The ILADS guidelines also reflect the high standards established by the Institute of Medicine for developing trustworthy guidelines and were reviewed by over 25 reviewers.
The complexity of Lyme disease makes a “cookie cutter” approach inappropriate, noted Dr. Dan Cameron, MD, MPH, lead author: “We moved away from designating a fixed duration for antibiotic therapy and instead encourage clinicians to tailor therapy based on the patient’s response to treatment.”
Coauthor Elizabeth Maloney, MD, commented on the need for clinicians to perform a deliberate and individualized assessment of the potential risks and benefits of various treatment options before making their initial selection: “We recommend careful follow-up because it allows patients to adjust therapy as circumstances evolve. This more selective approach should reduce the risk of inadequate treatment giving rise to a chronic illness.”
LymeDisease.org (LDo) is a non-profit 501(c)(3) that serves the patient community through advocacy, education and research. For further information, visit lymedisease.org. Lorraine Johnson, JD, MBA is the Executive Director of LymeDisease.org. She is the Co-Chair of Consumers United for Evidence-Based Healthcare, a national coalition of 40 patient groups. She is a patient representative for the government funding agency, Patient Centered Outcomes Research Institute.
ILADS is a nonprofit, international, multidisciplinary medical society dedicated to the appropriate diagnosis and treatment of Lyme and associated tickborne diseases.
Reference: Cameron et al, Evidence assessments and guideline recommendations in Lyme disease: The clinical management of known tick bites, erythema migrans rashes and persistent disease. ERAIT 2014.
For more information, visit LymeDisease.org.
Brilliant work, keep it up, maybe the IDSA will follow
I agree with the amount article . I found a tick between my toes. I pulled it out I had no reaction like a bulls eye or rash. About 2 weeks later I started to feel symptoms, fatigue very bad not remembering things just very low energy. I went to a doctors office saw a physicians assistant she gave me such a hard time about having a Lyme test . I told her I had Lyme disease before and these were the same symptoms. Please take a Lyme test. She finally did and was very happy to report to me that I didn’t have Lyme and there was no indication that I ever had Lyme disease . I then requested all my records from my retired doctors office which in fact had all my tests , my intervenes records and the medications that I had taken for Lyme 5 years ago. I took these records to a certified doctor in the same office he ordered more blood work and everything came back saying all was fine. So I said may I please have a script now for doxycycline he said yes. This whole process took six weeks meantime I was not feeling well at all. Taking 2 to 3 hour naps and having no energy whatsoever. Now after being on doxycycline for two weeks I am feeling better.
My question is WHY DON’T DOCTORS AND PHYSICIAN ASSISTANTS EDUCATE THEMSELVES ABOUT LYME ???
I am so happy for this newsletter I will make a copy of it and send it to the doctors office.
Thank you for reading.
Margaret Kniser
A ps to my comment I have no health insurance and is costing me a lot of money for blood work which was unnecessary.
Margaret Kniser
Educating the medical community is the only way the patient is going to get treatment. The delays from Infectious Disease doctors all over the country have caused the patient to go into the chronic state. There is nothing worse than sitting in a doctors office and realizing they haven’t examined you or don’t believe you.
The other problem is that when you are diagnosed your insurance won’t cover the treatment. You are told the treatment is experimental. Thousands of dollars you can’t afford. No one cares if you become homeless. Good to see this being addressed.
My right knee started hurting. Then it started swelling! Then it really started to hurt to walk on it! My MD sent me to the Orthopedist who gave me a shot of Cortisone. After the third or fourth shot (and I was not getting better) the Orthopedist said she thought I might have Lyme disease so she gave me a Lyme test to which I came up positive. The Orthopedist sent me to a Rheumatologist who did NOT believe Lyme could be causing so much swelling in my knee. (My knee was now about 3 times normal) So, he relented and did a Lyme DNA test by drawing synovial fluid from my knee and sending it off to a lab. Soon he called me at home and asked me to come in for a consultation where he apologized profusely for his mistake. I not only had Lyme disase but also EVERY co-infection that was listed on that form as well! Now, his solution for this challenge was to scrape the inner lining of my kneecap to remove the Lyme… Are you still reading?
My question to him was this: What makes you think this will get rid of the Lyme? He responded by going to get his ‘college textbook’ and he showed me where it suggested that treatment. I asked what century it was written in and at that juncture, I chose to find a REAL, LIVE, and KNOWLEDGEABLE physician who thoroughly understood Lyme disease so I would NOT lose the use of my knee.
Fortunately I knew of an excellent Lyme Aware physician who was able to actually KILL the Lyme in my knee. Yes, I paid for all of his treatments out-of-pocket, and I still suffer some from a couple of the co-infections but life is wonderful now that my knee is actually as strong as before, thanks to choosing an awesome ‘Lyme Aware’ physician to treat my challenges.
Would you please be willing to share with me the name and contact information for your lyme-aware physician? I’m willing to go anywhere to get the help we need from a reputable, knowledgeable MD who is taking new patients. THANK YOU!
I was bitten by a tick in my California backyard in 1989 and had a very distinct rash. When I could barely walk, lost the use of my hands, and had only a few waking hours the doctor suggested rheumatoid arthritis or lupus. Doxycycline treatment was not started until 1991 and for only three months. I had a relapse in 2009, then 4 1/2 years of doxyclycline plus 6 weeks of daily infusions of another antibiotic. I have been symptom free for six months. The initial delay of 2 1/2 years before treatment caused 25 years of agony. I will continue to make donations to ILADS.
A Huge THANK YOU to Drs. Cameron, Johnson & Maloney and everyone at ILADS who contributed to the new guidelines. This is a big TURNING POINT in the battle over Lyme Disease!
What we could really use now (from ILADS or Lymedisease.org or one of the authors, or someone?) is a ONE PAGE SUMMARY of the new guidelines that we can hand out to patients and physicians as the new gold standard (including a reference to the published paper with the entire guidelines).
Can someone contribute a short summary for us to hand out???
Thanks.
Yes, a one-page (or so) summary would be so helpful.
So would research/statement on testing : the need for broader based tests (5-band), as well as the inherent problems of testing for Lyme and negative test outcomes.
I agree a 1 page summary would be extremely beneficial. Thank you to all Dr’s and others involved in the awareness and advocacy of Lyme!
Christine Lobel, December 1, 2014 Strong support for the top two statements. All my physicians here do not believe in or understand Lyme. A summary of the newest findings would be greatly appreciated and I would hand them out to each of the many specialists to help inform them of how they can become better informed and then help patients coming in with “strange persistent symptoms”. God bless you all doing such difficult work in this atmosphere of resistance.