According to the definition provided by Wikipedia: “The International Lyme and Associated Diseases Society is a non-profit pressure group which advocates for greater acceptance of the controversial and unrecognized diagnosis ‘chronic Lyme disease'” In other words, the people at ILADS are fighting to make certain that Lyme disease — especially chronic or persistent Lyme disease — is recognized as a “real disease.” [Link]
The reason why I wanted to include the Wikipedia definition is because of the term “pressure group,” which I find to be quite apropos. The reason why I find it to be so appropriate is because many, if not most, medical practitioners in the mainstream medical community have not (at least publicly) accepted the fact that Lyme and the associated coinfections are diseases that have long-term consequences. Subsequently, groups like ILADS have had to apply “pressure” to try to get other medical organizations to recognize, and publicly acknowledge, the seriousness of the diseases.
That said, ILADS should not be confused with the Infectious Disease Society of America or IDSA. Though, from its namesake, one might imagine that the IDSA would be an organization that concentrates on safe and effective treatments for diseases such as Lyme, there has been ongoing controversy surrounding its Lyme treatment guidelines and intellectual conflicts of interest among a number of its members.
In November of 2006 Connecticut’s then Attorney General, Richard Blumenthal, who is now a U.S. Senator, launched an investigation into the IDSA’s Lyme guidelines development process and specifically looked for antitrust violations. In a press release issued in May of 2008, Blumenthal stated: “My office uncovered undisclosed financial interests held by several of the most powerful IDSA panelists. The IDSA’s guideline panel improperly ignored or minimized consideration of alternative medical opinion and evidence regarding chronic Lyme disease, potentially raising serious questions about whether the recommendations reflected all relevant science.” And the importance of this issue can not be overstated given that all conventional medical practitioners follow the IDSA guidelines when it comes to treating Lyme disease. Perhaps more importantly, medical insurers use the guidelines to determine payments to the practitioners for the services they render, which also plays a huge role in the treatments they are willing to provide. Even more concerning is the fact that a number of physicians have lost their licenses to practice medicine when their treatments have deviated from the IDSA’s guidelines.
ILADS was founded in 1999 and it has focused on educating practitioners and the general public on all of the dreadful diseases that are, primarily, transmitted by ticks. It also gives patients and the loved ones of patients a way to find Lyme Literae Medical Doctors (LLMD) in their respective areas of the country. The reason this is important is because there are a number of physicians who are worried about the consequences they may have to face if it becomes known that they are willing to treat patients beyond, or outside, the IDSA guidelines; and, so, they do not openly advertise their services. Luckily, however, many physicians have been willing to provide their contact information through the discreet services provided by ILADS. In fact, I actually used ILADS services to locate Kathleen’s Lyme doctor in our area, and I could not be more grateful for the organization’s assistance.
The name of the doctor provided to us by ILADS is Dr. Thomas Moorcroft and he has been the only doctor we have seen to date who has been willing to work toward curing Kathleen as opposed to simply treating her symptoms.
For any of you out there who has been afflicted with Lyme, or for those of you who knows someone who has been afflicted with the disease, contacting ILADS may be well worth your time and effort. In Dr. Moorcroft’s case, it is my understanding that he, like many other LLMDs, is able to actually treat patients out-of-state once a doctor/patient relationship has been developed through an initial visit — perhaps, at this point, even a virtual visit — and from personal experiences, I would certainly say that contacting his office also may be well worth your time and effort.
The ugly truth is that, like COVID-19, Lyme disease is a pandemic. Unlike COVID, however, Lyme has received much less attention and, thus, far fewer resources (namely: money) to fight the disease. The good news, though, is that there are people out there who have the expertise, and the willingness, to help those who are suffering.
With any luck, the COVID-19 pandemic may actually serve to be a catalyst for change in the way in which Lyme disease is viewed. With all of the resources that have been dedicated toward developing vaccines for COVID, it may be fair to say that the research will lead to vaccines and more effective treatments for those suffering with diseases such as Lyme.