Most of the many Kaiser Lyme disease victims who have contacted us through the Kaiser Papers these past few years want to know how to obtain treatment for Lyme disease. Virtually all of these members have chronic Lyme disease, the late-stage persistent form of the disease.


Kaiser follows Lyme disease guidelines issued by the Infectious Diseases Society Of America (IDSA).

            These guidelines do not acknowledge or address the chronic form of Lyme disease. They only address the acute or early-stage Lyme disease.

The IDSA guidelines are a subject of an antitrust investigation initiated by the Connecticut Attorney General in 2006. The guidelines appear to be constructed in a manner that limits diagnosis and treatment and favors HMO’s and insurers.

    There is an alternative Lyme disease guideline formulated by the International Lyme and Associated Diseases Society (ILADS).
http://www.guideline.gov/summary/summary.aspx?ss=15&doc_id=4836&nbr=3481

    These guidelines are based on unbiased evidence-based medicine and the clinical experience of specialists who have treated many thousands of Lyme disease patients. In essence, the ILADS guidelines recognize chronic Lyme disease and that Lyme disease patients should be treated until symptoms resolve or are under control. ILADS has provided a comparison with the IDSA guidelines.

    It is possible that Kaiser patients can receive treatment for early-stage Lyme disease if they meet the restrictive qualifications provided in the IDSA guidelines. The Lyme “bullseye” rash, erythema migrans, is the hallmark symptom of Lyme disease and is specific to the disease. If a Kaiser member is fortunate enough to get this distinctive rash,

http://en.wikipedia.org/wiki/Erythema_migrans photograph it and, if possible, go to a Kaiser urgent care or emergency care facility so it will be documented and you will hopefully  receive timely and adequate treatment, which is critical. Do not wait for an appointment with your primary care or other doctor as the rash can quickly fade.

     If you are not so fortunate as to get the Lyme rash, and most are not, a diagnosis of Lyme disease is unlikely, particularly on the West Coast where the bulk of Kaiser members reside. Kaiser promotes the notion that Lyme disease is very rare on the West Coast;

    The ELISA screening test that Kaiser uses is unreliable for East Coast Lyme victims and is virtually worthless for West Coast Lyme victims;

http://lyme.kaiserpapers.info/nytimesart.html


    Please inform yourself of the IDSA guidelines, so that you receive diagnosis and treatment at least conforming to the minimal treatment stated in these guidelines. A patient who presents with a Lyme rash requires no testing. One danger in receiving care for Lyme disease through Kaiser is that the member will likely not be tested for coinfections of Lyme disease, some of which require different treatment than the antibiotic protocol for Lyme disease. Another risk is that treatment may be inadequate and not resolve symptoms completely. In this case, the patient can go on to develop treatment resistant forms of the disease.

       For those with chronic Lyme disease, which comprise 100% of the Kaiser members who have contacted us, help from Kaiser is virtually impossible. Kaiser physicians who diagnose and treat the chronic form of this disease are subject to reprimand. These patients are usually assigned to infectious disease specialists who will normally refuse diagnosis. To our knowledge, only one chronic Lyme patient who has contacted us in the past three years has received a diagnosis of Lyme disease. This patient was given 30 days of antibiotics, told she was cured, and informed that any future symptoms she has are not due to Lyme disease. The patient continues with Kaiser and continues to be very ill.


        Kaiser members have essentially two choices in receiving care for Lyme disease;

        Pay for competent help for Lyme disease outside of the Kaiser system. This can be expensive. Do not expect 
reimbursement from Kaiser. Cases we know of that have been run through Kaiser’s arbitration system have 
been unsuccessful in providing adequate compensation to the Kaiser member. In a very few cases we know of, Kaiser has been known to pay for extended antibiotics (prescribed by a physician not with Kaiser and purchased through a Kaiser pharmacy) provided the medication is not expensive. But this may be old information and Kaiser may no longer do this.

        In either case, Kaiser members with Lyme disease should seek help from their local support group. All or most are very familiar with Kaiser’s stance on Lyme disease and their tactics. The links below will help in locating a support group in your area;
http://www.lymeinfo.net/support.html
http://www.lymenet.org/SupportGroups/
http://lymedisease.meetup.com/about/