Lyme Rights IDSA Protest Media Talking Points

Why is a protest in Westchester NY important to your readers? 

Doctors all over the country rely on treatment guidelines to instruct them in patient care. The doctors who write them are considered the “experts” on an illness and it is their conclusions that will determine how an illness is diagnosed and treated. These “experts” are often invited to hospitals as teachers to hold seminars for other medical professionals.  Other physicians do not know about the experts’ biases, and they certainly don’t mention other treatment guidelines that contradict their own. The experts’ guidelines are picked up without scrutiny by the CDC, insurance companies and local hospitals. They simply become the “truth.” Three of the 14 authors of these guidelines are based at Westchester Medical Center/NY Medical College, including lead author Dr. Gary Wormser. 

What are the most problematic changes we see in these new IDSA guidelines? 

Dr. Raphael Stricker, president of the International Lyme & Associated Diseases Society (ILADS) (the medical society with conflicting viewpoints) prepared an excellent analysis of the flaws in these new guidelines. It is in our press kit and also available on the lymenews.org and the ILADS.org websites. ILADS has asked for a retraction of the new guidelines. One of the main concerns with the guidelines is the attempt to oversimplify Lyme disease as a “hard to catch, easy to treat infection” where testing or a bull’s eye rash can always be relied upon for diagnostic purposes. According to ILADS, the complexity of co-infections, unreliable testing, and frequent absence of as bull’s eye rash are serious reasons why this approach will leave many Lyme patients undiagnosed and thus untreated.

How many people actually have a bull’s eye rash?

Only 35 – 68% of Lyme patients present with a bull’s eye ‘EM’ rash, but up to 40% develop neurologic involvement. The IDSA guidelines will cause physicians to miss many cases of Lyme, resulting in missed diagnoses and a future epidemic of late stage chronic Lyme. The guidelines ignore the Lyme-related psychiatric literature.

How accurate is the testing? 

The IDSA guidelines-recommended tests are 36 – 70% sensitive. (95% sensitivity is the goal). Missing so many cases results in a high percentage of non-rash patients becoming chronically ill.

Doesn’t Lyme just affect people in the Northeast?

Lyme is now in 49 states. There are numerous documented cases of indigenous Lyme disease in the South, Midwest, and far West. We have Lyme patients attending the protest from as far away as Texas, California and Florida.  

Won’t doctors they just go ahead and diagnose Lyme disease if they see the symptoms? 

For years, the CDC has advised doctors to make a clinical diagnosis and to use testing in a supportive role, but these IDSA guidelines put additional pressure on doctors NOT to diagnose without either a positive test or bull’s eye rash. 

But if they do make a diagnosis, what changes? 

Insurance companies have the ammunition they need to deny patients reimbursement for Lyme disease medications. Medical boards nationwide have guidelines from the “experts” to use in investigating and prosecuting treating physicians.  

Why does IDSA say there’s no such thing as “Chronic Lyme” although people continue to be sick?

IDSA guidelines tell doctors that 14-28 days of antibiotics will cure Lyme and antibiotics do not help patients with “chronic symptoms” after that initial treatment regimen for Lyme is over. The IDSA doctors admit patients do experience symptoms following treatment but minimize their importance as simply the “aches and pains of daily living.” Treating symptoms is recommended but treating the disease is not─they will not admit there is an ongoing infection or need for continuing antibiotics. The ILADS doctors believe the clinical and research evidence shows long-term antibiotics can significantly improve the quality of life for these patients. The potential harm in letting a persistent Lyme infection go untreated far outweighs the potential side effects of long-term antibiotic care.

Why are Lyme patients so angry over these guidelines?

We see these guidelines as a giant step backward for Lyme patients. We need the science to catch up with our reality. Doctors should be working together for an accurate test and cures rather than ignoring the full body of science and attempting to simplify a very complex disease. We are also very concerned that only those patients with the financial resources to pay for their own medications will find relief from this disease. Quality of care will be compromised because the neediest patients will be denied care based on these IDSA “one size fits all” guidelines. We are also concerned that there will be a decrease in the number of treating physicians.

How many cases of Lyme disease are there in the United States?

According to the CDC, only 10% of Lyme disease cases meeting the CDC criteria are reported each year, thus approximately 240,000 new cases of Lyme meeting the CDC criteria occur each year in the US, and it is now a problem worldwide. Children are at the highest risk of acquiring Lyme disease, and there have been studies showing significant IQ drops in students with Lyme- reversed after treatment.

If Lyme is easy to diagnose and treat, why:

• 1.     Has federal legislation with significant congressional support been introduced for $100 million?
• 2.     Is Lyme disease listed as a bio terrorism agent and why is money being spent on research?
• 3.     Have over 200 Lyme organizations been created throughout the US?
• 4.    Is the US Army putting large sums of money into treated uniforms, a field testing device for ticks, and GIS .  . technology to protect its soldiers?
• 5.     Why do insurance companies ask if you have chronic Lyme when you apply for a policy?
• 6.  Why have 18,000 people already signed an LDA petition in a few weeks time opposing the guidelines on   humanitarian grounds? (see www.LymeDiseaseAssociation.org)
• 7.  Why has the patient community been able to raise millions of private dollars for a chronic Lyme disease research center to be opened in 2007 and housed at Columbia University? (see www.LymeDiseaseAssociation.org)
• 8.   Why has the national patient group, LDA, been able to meet with CDC Director and top CDC officials in DC?

• Why does the IDSA :

• 1.     Feel compelled to list tests and treatments, both conventional and alternative, that they do not support? 
• 2.     Feel so compelled to remove clinical discretion─ diagnosis by EM & blood test only, when research has demonstrated these tests can be wrong up to 50% of the time?
• 3.     Seem to have designed these new guidelines for easy insurance company denial of testing/treatment?
• 4.     Allow 14 doctors with minimal or no chronic Lyme (post treatment failure) experience to have so much power and what checks and balances exist to protect against personal agendas?