It’s been quite a long time since I wrote an article about Lyme disease, but in the last several months the impairment has cropped up quite often. Certainly, as a “disability”, or reported cause of “total disability”, the rules have changed, and so have disability insurers.
Ten to twenty years ago, Lyme disease was considered a very serious disease with complications that could last a lifetime referred to as “Late Onset Lyme disease”, or, “PTLDS, post-treatment Lyme disease Syndrome”. Symptoms ranged from arthritic and inflammatory joint disease, to just about any symptom physician’s could think of including headaches, blindness, rashes, fever, and so on. Although disability insurers took a more conservative view of the disease, alleging it was not cause for total or permanent disability, serious claims reported by prominent doctors were paid to maximum duration.
Eventually, the CDC, and other prominent medical authorities had enough when physicians began administering IV antibiotics that literally destroyed human livers, and threatened the removal of medical licenses of doctors who continually prescribed IV antibiotics for their patients. Physicians immediately ceased the IV antibiotics and suddenly became “herbal experts” on Chinese herbs etc. and began recommending over the counter herbal remedies to cure Lyme. It’s unclear whether the herbal remedies actually worked, but most physicians were able to keep their licenses.
However, in the last five years, Lyme disease, and it’s permanent classification as total disability changed when regular antibiotic treatments for the bacterium borelia burgdorferi, (rarely borelia mayonii), was found to eliminate the disease from most persons. Tests, such as the IgM/IgG by Western Blot and CD57, while originally used to diagnose Lyme, were essentially found to be unreliable as to whether the bacterium remained in the human body after treatment.
The long lasting effects of positive versus negative test results for Lyme, as reported by experts, was assumed because the body’s building of antibodies against the disease can last a lifetime. Nevertheless, today, the CDC’s recommendations dictate a trial of antibiotics for 2-4 weeks at which time it is presumed the disease is gone.
As a disability Consultant during the early years of managing claims for Lyme patients, I noticed several trends that became deeply concerning.
First, physicians who had absolutely no idea what was wrong with their patients, latched on to, “Well, it must be Lyme”, treated with antibiotics that didn’t do anything, and patients never got better for a lifetime of disability. Some physicians actually tried using hyperbaric oxygen chambers as treatment for Lyme disease with the same negative results.
Second, patients became so convinced that they had Lyme disease that they often would not give up that notion, even when other diagnostic evidence existed that they were disabled from something else. I’ve had insureds assure me over and over again that they have “Late Onset Lyme” even though they were given several trials of IV antibiotics!
There seemed to be no end to the excuses insureds used to absolutely insist they had Lyme. Physicians today agree mostly that once a patient has had several trials of antibiotics, they no longer have Lyme, and of course, disability insurers agree.
I am absolutely sure there are people reading this article who are thinking how wrong this article is, and that they still have Lyme disease. While, I have no MD after my name, and I don’t really know their particular situations, I can attest with some accuracy that there are insureds who will never know the real cause of their symptoms because they refuse to accept they no longer have Lyme.
A small number of my clients, were found to have brain lesions and were eventually diagnosed with MS, after taking antibiotics for years for Lyme. It is very important for all insureds to continue treatment and consultation to determine with some degree of certainty what their diagnosis really is.
I’m sure I’m going to get quite a few emails from insureds telling me their doctors are still treating them for Lyme, without a recent positive Western Blot, and in opposition to the position of the CDC’s recommendations for the treatment of Lyme. And, this might be true, as I said I’m not an MD, but a disability claims expert.
The position of nearly all disability insurers today is that a person does NOT have Lyme without a positive Western Blot test in the last month; and, once two trials of antibiotics have been administered, the patient no longer has the disease. This is not me saying this, but the medical community of experts who write Medical Journal articles and report their own trials and experiences.
The history of Lyme disease clearly has had a complicated history of diagnosis and treatment. Confirmed cases of Lyme disease have been found in every US state with 476,000 new confirmed cases reported each year. Scientists estimate that 2 million people could suffer from post-treatment Lyme disease in 2020. From 1999 – 2003 there were 114 Lyme-related deaths from acute respiratory failure.
These statistics suggest the importance of early treatment of Lyme after being bitten by a tick. They also suggest that treatment with antibiotics may not be an easy fix for Lyme as is currently predicted by experts. From a disability claims perspective, insurers may need to bring back previous claims standards and practices for long-term benefit payment of Lyme when designated as a “primary” diagnosis.
In the meantime, Lyme insureds may still be victims of modern medicine not willing to admit the existence of Lyme beyond the usual 10-day trial of antibiotics.
If you are having trouble supporting a claim for Lyme disease please feel free to contact me at 207 793-4593 or lindanee.dcs@gmail.com.
I’m here to help.
