10 tips for Lyme disability insurance claims

by Jennifer Hess, Esq., Partner at Riemer Hess LLC

Obtaining disability insurance benefits for Lyme disease is no easy feat. Insurance companies unreasonably scrutinize Lyme disability claims – often denying claims by dismissing symptoms as “unsupported” or “exaggerated.”

This incredibly unfair practice is designed to increase insurer profits at the expense of people disabled by Lyme disease. The only way to increase your chances of approval is with careful preparation, strategic planning and sufficient evidence supporting your disability.

Below are our top 10 tips to help you obtain disability benefits for Lyme disease.

1. Secure the support and cooperation of your doctor

Before filing your disability claim, talk to your doctor to confirm that they not only believe you are disabled, but also that they will participate in the disability claim process. The process will require your doctor’s time and efforts to complete forms and respond to inquiries from the insurance company. If your doctor isn’t willing to cooperate in support of your claim, the insurance company will automatically assume that your claim is not legitimate

2. Ask your doctor to supplement the claim forms with a letter

Standard disability claim forms contain traps designed to help the insurance companies deny claims. For example, the claim form may only prompt your doctor about physical symptoms even though you might experience other disabling symptoms, such as cognitive difficulties. Unless your doctor supplements the form with more information, the insurance company will receive an incomplete picture of your condition.

Thankfully, your doctor is not limited to the forms provided by your insurance company. You can ask your doctor to supplement the forms with a detailed letter.

The letter should explain the nature, frequency, and duration of your Lyme disease symptoms, while also explaining how these symptoms impact your ability to work. Other pertinent information, such as lab results or abnormal clinical findings, can add further valuable support.

3. Undergo a functional capacity evaluation, neuropsychological evaluation, or cardiopulmonary exercise testing

Insurance companies always want to see objective proof of your disability, where possible. Testing that your doctor recommends for treatment purposes may be helpful to your disability claim.

However, there may be other tests available to substantiate your disability claim with the goal of measuring your symptoms’ impact on your physical functions rather than as treatment. These tests include the following:

Functional Capacity Evaluation If your Lyme disease causes physical symptoms such as stiffness or muscle weakness, consider undergoing a functional capacity evaluation (also known as an “FCE”). An FCE is a series of tests, practices, and clinical observations that objectively measure your physical ability to perform work-related activities. These activities include: sitting; standing; walking; lifting/carrying; pushing/pulling; performing gross or fine manipulations (for example, typing); and many other occupational functions.

Neuropsychological Evaluation If your Lyme disease causes cognitive symptoms such as brain fog, consider undergoing a neuropsychological evaluation. This is an in-depth assessment of how well your brain functions with respect to certain skills and abilities. It involves testing your performance in the areas of: reading; language; memory; attention/concentration; processing speed; learning; reasoning; problem solving; and more.

Cardiopulmonary Exercise Test If your Lyme disease causes significant physical fatigue and exertional intolerance, consider undergoing a cardiopulmonary exercise test (also known as a “CPET”). A CPET is a highly specialized stress test that objectively measures your ability to exercise and physically exert yourself.

Each of the above-noted tests may be used as acceptable proof of a Lyme disability. However, the insurance company will want to see that the testing included measures to ensure that you consistently put forth maximum efforts (known as “validity testing”), and that you passed all such measures. If you don’t satisfy validity measures, the insurance company will dismiss the results as unreliable and invalid.

4. Explain how your Lyme symptoms impact your ability to work

You will need to complete forms and talk to the insurance company representative about how your Lyme disease impacts your ability to work. This is your opportunity to tell your story. Do so by listing each of your symptoms and describing how each impacts your ability to perform the specific duties of your occupation. Where possible, provide everyday examples and be sure to describe any work activities that exacerbate your symptoms. Don’t forget to detail the non-exertional demands of your work, such as performing analytical thinking.

If your symptoms unpredictably fluctuate in nature or severity, be sure to detail that as well. The ability to maintain a normal work schedule on a consistent, reliable, and sustained basis is a requirement of any gainful employment. If your fluctuating symptoms prevent you from meeting that requirement, the insurance company should find that you are disabled.

5. Keep a Lyme symptom diary or journal

A symptom diary or journal can help demonstrate the nature, frequency, and duration of your Lyme disease symptoms. A contemporaneous, daily log of your symptoms is ideal.

For example, if you had joint pain on Tuesday, you should put that in your diary. If you could not get out of bed on Wednesday,you also should put that in your diary. The more specific your diary entries are, the better. Specificity helps the insurer view and evaluate your symptoms in context – making it easier to prove your Lyme disease disability claim.

Consider giving your doctor a copy of your Lyme disease symptom diary to put in your file. This will better enable your doctor to evaluate the full spectrum of your symptoms, rather than just the ones that you remember to report during your visit. This also can help your doctor keep better treatment notes that accurately reflect the totality of your symptoms.

6. Don’t forget to document any co-morbid conditions contributing to your disability

If you have any medical conditions other than Lyme disease contributing to your inability to work, be sure to document them. Co-morbid diagnoses can have a major impact on your disability, whether tick-related (for example, Babesiosis) or not (for example, rheumatoid arthritis). Gather documentation from the doctors that are treating any co-morbid conditions and be sure to explain the impact of such to your disability insurer

7. Gather and neatly organize your evidence with an index

The insurance company will not gather evidence of your disability on your behalf. That responsibility is on you. The more supportive evidence that you can proactively provide, the better.

Gather all medical evidence (for example, testing results, treatment notes, and statements from your doctors), occupational evidence (for example, a job description and a statement written by you detailing how you cannot perform the demands of your work), and anything else that might support your claim.

There is no limit on what you can submit, so feel free to get creative. You can submit photographs, witness statements from co-workers or friends, or even work performance evaluations.

Neatly organize, label, and index the evidence. This will help ensure that nothing goes unseen or unreviewed.

In addition to the testing detailed above, you’ll want to get the results of any serological testing. This is laboratory blood testing that typically involves two tiers to identify Lyme antibodies: (1) the “EIA” (enzyme immunoassay) or sometimes an “IFA” (indirect immunofluorescence assay); and (2) an immunoblot test, commonly referred to as the “Western Blot” test.

The Western Blot is arguably a more reliable indicator of Lyme, but it is not necessary to make a diagnosis. Although serological testing is not necessary to diagnosis Lyme disease, positive results will be helpful for your disability claim. Even if the results are not positive, the insurer will still want to see that you have had this testing done.

8. Satisfy the deadlines set forth in your disability insurance policy

Your long term disability insurance policy contains deadlines that you must satisfy. If you do not satisfy the deadlines, you will lose your opportunity to pursue your claim.

The two most important deadlines you must meet are “notice of claim” (the date by which you must notify the insurer that you intend to file a claim) and “proof of claim” (the date by which you must submit your supportive evidence).

These deadlines can be surprisingly short. For example, the deadline to file notice of claim could be as short as 7 days after the onset of your disability.

Always check your long term disability policy and be sure to keep proof of your submissions to demonstrate timeliness.

9. Receive consistent and frequent treatment while your disability claim is pending

You must continue to receive medical treatment for Lyme while your disability claim is pending. This is because most disability insurance policies require that you are under the continuous care of an appropriately qualified medical provider to be eligible for benefits.Consistent and frequent treatment is ideal, but you should always talk to your doctor about what frequency they deem appropriate.

Eventually, your insurer will want to see those updated treatment records to evaluate how you are doing.

10. Cooperate with the insurance company’s investigation within reason

Disability insurers have a right to investigate your claim, and they generally obligate you to cooperate with this process. As part of the investigation, your disability insurer might want to interview you or talk to your doctors.

Your disability insurer also might demand that you submit to a so-called “independent” medical examination by one of their doctors. The more supportive information that you can proactively throw at the insurer to support your claim, the less likely it is that the insurer will ask for more information during the investigation process. It is always best to proactively submit as much supportive evidence as possible.


The success of your Lyme disability insurance claim will boil down to careful, strategic planning and sufficient evidence. Without this, your chances of securing disability insurance benefits will substantially decrease. Always seek help from a disability insurance attorney who has relevant experience with Lyme disease.

Jennifer L. Hess is an attorney partner at Riemer Hess LLC in New York City, a law firm focusing on disability insurance claims. For more educational information about proving Lyme disability insurance claims, visit their FAQ Center page, “Is Lyme Disease a Disability?


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