Lyme Disease Diagnosis and Treatment: How These Issues Affect Your Disability Claim

With summer and the outdoor season upon us, there can be different causes of disability to deal with. One of the more common conditions we see during this time of year, especially in the Northeast, is Lyme disease. Although there is evidence that Lyme may be spread through multiple sources, the primary method of infection is a blacklegged or deer tick bite. Lyme is a complex multisystem inflammatory disease that can affect all of the major organ systems in your body and cause a wide range of symptoms including fever, headaches, rash, pain, vertigo, speech impairments, mood swings, depression, and hallucinations. In addition, these symptoms don’t always develop immediately. It can take days, weeks, or even years before the onset of symptoms due to Lyme disease, making it extremely difficult to pinpoint the causal event of the symptoms. 

The Bulls-eye rash, one of he main indicators of Lyme disease.

The Bulls-Eye Rash, one of the main indicators of Lyme disease.

With such a wide variety of symptoms and varying timeframes of onset, Lyme presents an especially challenging set of problems for a physician to diagnose. Many patients are initially diagnosed with other conditions such as multiple sclerosis, chronic fatigue syndrome, or rheumatoid arthritis. There are two generally recommended tests for Lyme disease: the Western Blot analysis and the ELISA test. The Enzyme-Linked Immunosorbent Assay (or ELISA) test is more of a broad antibody test, while the Western Blot tests for specific Lyme antibodies. Although these are the recommended tests, they’re often characterized as less than reliable, with both false positives and negatives, by the medical community. Lyme is rather unique in that it can morph into different forms and elude the immune system, meaning that negative antibody tests don’t necessarily mean that Lyme is not present.

Even after a patient has been diagnosed with Lyme disease, the treatment is not free of controversy. Medical professionals agree that Lyme is treatable with antibiotics, but the agreement stops there. There is argument over both the required strength of the antibiotics as well as the duration of the treatment. If Lyme is quickly diagnosed at the beginning of the infection, antibiotics taken for 2-4 weeks will generally clear up most major symptoms. If the infection is not recognized quickly, antibiotics taken for longer periods of time may work, but these longer treatment periods are not sanctioned by the Center for Disease Control beyond a (seemingly arbitrary) 30 day period and some infectious disease physicians have come to criticize those treatments.

With all of this uncertainty around the diagnosis and treatment for Lyme disease, disability insurance companies have seized the opportunity to dispute the diagnosis and treatment of many claimants filing for disability benefits based on Lyme disease. Claims examiners are taught to cite partially negative tests while ignoring not only the physical and mental symptoms but also the generally accepted knowledge that these tests may be inaccurate. Nurses and doctors are hired by claim departments to argue that the treatments are not generally accepted or that the antibiotics are not being administered properly, invoking the policy defense that requires appropriate care and treatment.

There are several things claimants can do to make sure that they’re protected against the insurance company’s allegations and attacks for claiming disability resulting from Lyme disease:

  • Show proof of the bulls-eye rash.  Not everyone who suffers Lyme disease gets erythema migrans, the bulls-eye rash, but it is one of the most clear and obvious signs of the disease. This distinctive rash appears most commonly as a white circle with a red ring encircling it, but it may also be reversed with a red circle and a white ring. The duration of the rash may last from days to several months, and rashes may come and go over time. If this rash is present along with the other symptoms of Lyme, they present a clear indication of the disease and can help many medical professionals diagnose the condition. Important tip: take pictures to document the rash!
  • Document the medical history of previous tick bites or Lyme disease.  While the initial diagnosis and treatment of Lyme disease is difficult, these problems are compounded in cases where there are previous tick bites let alone Lyme disease. Instances of repeated cases of Lyme disease often cause the diseases and its symptoms to become much more severe.  Important tip: make sure your medical history details your tick bite and Lyme history!
  • Receive treatment from a Lyme Literate Medical Doctor (LLMD).  Because of the complicated nature of Lyme disease, your primary care physician may not be the best source to obtain the proper diagnosis and treatment. If you’re at all concerned that you may have contracted Lyme disease, it’s important to find an LLMD in your area who is familiar with the disease. LLMD’s may be able to identify symptoms that other physicians missed and are more familiar with courses of treatments that may be necessary to prevent the Lyme disease from worsening.  deer tick
  • Use caution anytime you are outside or bit by a tick.  It’s a cliche: an ounce of prevention is worth a pound of cure.  So, if you’re outdoors often, especially if you live in the Northeast, be very careful to fully examine any tick bite. Blacklegged or deer ticks are the most common transmitters of this disease – their picture is shown here to the right. Nymphs, or baby ticks, are even much smaller but can still transmit Lyme disease. If you live in a Lyme endemic area and are bitten by a deer tick, really watch how you feel.  If you have any possible symptoms, it’s better to error on the side of caution and consider visiting your physician if an LLMD isn’t available. No matter how trivial you may consider the bite, the threat posed by Lyme disease can have a hugely detrimental impact on your day to day life.

Lyme disease can cause complications and issues when filing your disability benefits, but there is another condition that is the direct result of Lyme that causes even more problems for claimants. One of the biggest issues raised in disability claims occurs when claimants need treatment and are unable to work for longer than the average recovery time of 2-4 weeks. Although most people are able to return to work within this period, the CDC estimates that 10-20% of Lyme patients experience a condition known as “Post-Treatment Lyme Disease Syndrome” (PTLDS). This condition had become known as Chronic Lyme Disease, but research has refined the understanding of this condition. This is a misunderstood medical issues and may be quite under-reported, especially in the context of disability claims.  PTLDS sufferers experience lingering symptoms of fatigue, pain, muscle aches, and joint problems. Many Lyme experts believe that this condition is caused by residual damage to the tissues and immune system resulting from the infection. Insurance companies very often deny benefits to those experiencing PTLDS because their hired experts incorrectly group this condition into Lyme disease, basing their opinions on suggested normal recovery times and alleging that claimants no longer suffer from Lyme disease and do not benefit from treatment, completely ignoring the underlying condition which has been recognized by the CDC and is generally accepted by the Lyme medical community.  Because many claimants are also misinformed about this condition, they don’t understand the tactics needed or their options to fight back against insurance company denials in these types of claims.

Lyme disease and its accompanying medical issues are among the most frustrating and troubling conditions to face in medicine. The lack of clear testing and treatment protocols gives insurers the leeway to fight or even deny your claim, even if your medical provider provides clear proof of the condition. These problems are compounded and multiplied when experiencing complications from PTLDS. Trying to deal with the disability claim process while having to suffer the physical and mental symptoms of a medical condition can be overwhelming and even impair the treatment and recovery from Lyme disease. Understanding the finer points of Lyme disease as well as following some of the tips laid out in this article can help reduce the level of anxiety

If you or someone you know is experiencing complications with their Lyme disease disability claim, please call our offices toll-free at (855) 828-4100 or visit our website for a free consultation to see how we can help.

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