For many years these guidelines have faced considerable criticism by Lyme advocates and even prompted the development of alternative treatment guidelines by the International Lyme and Associated Disease Society (ILADS). The sets of guidelines issued by these organizations are both more than five years old and are in the process of being updated, providing the perfect opportunity for patients to act as their own advocates and push for clearer diagnostic procedures and better treatments to be officially sanctioned.
Huge Response to Survey on Lyme Treatment
The last survey conducted by CALDA garnered over 4000 responses from patients, all expressing their opinions on their willingness to try different treatments, their assessment of risk and benefit of some Lyme disease therapies, and also their own experiences of treatment of Lyme, whether adhering to current guidelines or not. At the time of writing, the current survey has already had nearly 3000 respondents, with 1000 within the first 24hrs of it being accessible. The attraction of this kind of online patient survey is its accessibility and the confidentiality with which responses are treated.
However, these are also downsides to such surveys as there is no way of telling if responses are from genuine patients or whether reports about diagnosis and treatment are accurate. The survey is quite short, an important factor for many patients suffering from cognitive Lyme disease symptoms such as poor concentration and memory impairment. Unfortunately, however, the survey cannot be partially filled out, saved, and returned to, which could reduce the number completing the survey. Patients are encouraged to fill in the survey only if they live in the US and are over 13yrs old and the results may, like the earlier CALDA survey, be published (whilst maintaining confidentiality) in medical literature.
Will Patients’ Views be Recognized?
Those expecting the patient responses to hold significant sway over the revision of the guidelines issued by the Infectious Diseases Society of America may, however, be in for some disappointment. The medical establishment continues to view Lyme disease as a treatable illness requiring only short-term antibiotics in most cases and to hold that Chronic Lyme disease does not exist.
A recent MedScape review of the literature concluded that chronic Lyme disease is often erroneously used as a catch-all to the detriment of many patients who may be suffering from an entirely different condition, perhaps even another tick-borne disease. Doctors failing to find an adequate diagnosis of a confusing array of symptoms may resort to calling it chronic Lyme disease which then prevents the patient from receiving proper medical attention for their symptoms which can be all too real.
Chronic Lyme Disease Still not Considered Real
Patients suffering from so-called Chronic Lyme disease often experience prolonged neurocognitive symptoms and somatic symptoms ranging from fatigue to arthralgia, memory problems and susceptibility to other illnesses and infections. Often the patients have no objective medical findings and Lyme disease tests prove seronegative which leads most doctors to deny that they are suffering because of Lyme disease.
It may be that current diagnostic procedures for Lyme disease are simply inadequate in assessing the presence of the illness and this is one reason that a survey of this kind can be particularly helpful. Asking doctors who adhere to the current guidelines to draft new guidelines runs the risk of them unintentionally ignoring symptoms that are highly significant to patients but not considered by most doctors as connected to the disease itself.
Patients Vote Against IDSA Lyme Disease Guidelines
The IDSA guidelines will be removed from the National Guidelines Clearinghouse in January and the Institute of Medicine has recommended that all new guidelines such as those for Lyme disease take into account patient opinions in order to make the guidelines trustworthy. As CALDA’s previous survey found that 80% of respondents would choose not to be treated under IDSA guidelines it is clear that the revision process needs to be rigorous and the new advice be able to be seen as reliable, sympathetic, and trustworthy, rather than dismissive of the majority of patients experiencing Lyme disease firsthand. The IDSA themselves have not (yet) approached patients directly for their views on the diagnosis or treatment of Lyme disease so this survey offers a singular opportunity to band together with felllow sufferers to instigate change.
Changing the Course of Lyme Disease Treatment
The survey has been put together by Lorraine Johnson, a lawyer who is also the Chief Executive of the organization formerly known as CALDA. Although it is unclear whether the IDSA or ILADS will be able to, or wish to use the survey results prior to publishing new Lyme disease treatment guidelines it certainly sends a powerful message that patients’ voices need to be heard, especially when their views appear so at odds with official positions on Lyme disease.