As a Social Security disability attorney, Lyme disease cases represent a complex, frustrating, and often misunderstood type of disabling chronic illness. While the acute phase of Lyme disease is widely recognized and typically responsive to antibiotics, a subset of individuals develop long-lasting symptoms—often referred to as “chronic Lyme disease” or “Post-Treatment Lyme Disease Syndrome” (PTLDS). These cases are challenging both medically and legally, particularly when pursuing Social Security Disability Insurance (SSDI) or Supplemental Security Income (SSI) benefits.

In this blog post I will discuss winning strategies that I have used over the past few years to develop a compelling case for benefits based on Lyme disease.

Lyme Disease – the Basics

Lyme disease is caused by a bacteria called Borrelia burgdorferi, transmitted by ticks. While early-stage Lyme disease is well understood, PTLDS is still gaining wider medical acceptance. A recent Johns Hopkins study found that 14% of early-diagnosed patients developed prolonged symptoms such as fatigue, musculoskeletal pain, and neurocognitive impairment. More recently the Wall Street Journal published an article entitled “Chronic Lyme Disease Acceptance Grows Among Doctors After Years of Debate.”

Interestingly, the aftermath of COVID-19 has offered the public and medical professionals a clearer picture of how infectious diseases can lead to persistent, debilitating post-viral syndromes. I believe that this context helps Social Security judges understand chronic Lyme within the broader framework of post-infectious disability syndromes.

Can You Use SSA’s Blue Book of Listings to Win Your Lyme Disease Case?

Unfortunately, Lyme disease is not listed in SSA’s Blue Book of Listed Impairments. However, you can argue that your impairments equal a listed impairment. The listings I most frequently look to include:

• Listing 14.02 (Systemic Lupus Erythematosus)
• Listing 14.09 (Inflammatory Arthritis)
• Listing 11.17 (Neurodegenerative Disorders) –  if neurological involvement is well documented

In order to show that a Lyme case equals one of these listings, you would have to provide well-supported medical opinions which clearly explain how the combination of your symptoms is functionally equivalent in severity to the criteria of a listed impairment.

In my experience State Agency adjudicators are usually not very receptive to the argument that Lyme Disease equals one of these listings. While I have had some success making this argument to an Administrative Law Judge at a hearing most judges will decide Lyme cases under a functional capacity analysis.

How Do You Win a Disability Case When There are No Objective Tests to Assess the Severity of your Lyme Symptoms?

Lyme Disease cases pose a challenge because there are no objective tests like MRIs or CT scans to assess the severity of your symptoms. While there are tests to confirm that you have Lyme, these tests do not offer your doctors any insight as to the symptoms you might be experiencing.

By contrast, in a back pain case, an MRI showing a herniated disc with spinal cord compression can be associated with symptoms of back pain and radiating pain and numbness into the legs. There is no such test to assess Lyme symptoms.

Currently doctors identify symptoms based on what you report – in other words the evidence of your functional impairment is subjective, not objective. Social Security disability decision makers are much more comfortable approving cases where there is clear objective evidence of functional impairment.

SSA evaluates disability based not on your diagnosis, but on how symptoms impair your functional capacity. This is the essence of the residual functional capacity (RFC) determination under SSR 96-8p, which requires a function-by-function analysis of what the you can still do, despite your limitations.

For PTLDS, common limitations often include:

• Inability to sustain attention for extended periods
• Severe fatigue leading to frequent unscheduled breaks
• Sensory issues, like light or sound sensitivity
• Chronic pain interfering with manual dexterity or mobility

Under SSA law, disability judges are required to consider how symptoms of “invisible illnesses” like Lyme Disease wax and wane over time by reviewing the entire medical record. Further, Social Security Ruling 16-3p requires adjudicators and judges to assess the “intensity, persistence, and limiting effects” of symptoms based on the full record.”

This is why it is so important for you to visit your doctor regularly, seek treatment with a specialist, and follow all recommended treatment. While it may seem futile to continue to visit your doctor when there are no effective treatments for your Lyme symptoms, SSA expects to see a “paper trail” of treatment records if you hope to win.

What Can You Do About SSA Consultative Examinations that Cast Doubt on Your Credibility?

SSA often orders consultative exams (CEs), which may last only 15–30 minutes and lack access to long time treatment records. In years past, SSA was required to give more weight to the opinion of a treating physician over that of a CE doctor who saw you for less than an hour. However, SSA eliminated the “treating source” rule and now adjudicators and judges can deny a claim based on the report of a CE physician or even a non-examining medical consultant over the opinion of a doctor who has treated you for 15 years.

In my experience State Agency adjudicators will rarely approve an “invisible illness” case if there is a CE report that minimizes your symptoms. However disability judges usually recognize that a long time treating physician – and especially the opinion of a specialist – almost certainly has more value than the observations of a storefront industrial clinic doctor who saw you for a CE. Most judges also recognize the limitations associated with a 30 minute CE appointment.

In cases where I have to rebut the conclusions of a CE doctor I focus on

• CE’s failure to consider claimant’s full history
• Inadequate testing (e.g., no neurocognitive screening)
• Lack of familiarity with Lyme/PTLDS-specific functional effects

Arguing for Approval Under a Functional Capacity Theory of Disability

If you are under the age of 50, in order to win you have to prove that your “residual functional capacity” has been so eroded that even simple, unskilled entry-level sedentary work would not be possible because:

• You would be off-task more than 15% of the work day
• You would miss more than one to two work days per month
• The combined effect of your symptoms and medication side effects would not allow you to physically or cognitively perform the duties of a simple job.

At hearings, disability judges bring in vocational witnesses to answer hypothetical questions about your capacity to reliably perform a simple, entry-level, sit down job.

Since judges know what factors will prompt a vocational expert to identify jobs that exist for any set of factors included in a hypothetical question, it is easy for a judge who wants to deny your claim to create a hypothetical question that supports a denial.

In my experience it has been increasingly difficult for anyone under age 50 to win disability benefits and this is especially the case for those pursuing benefits based on subjective reporting of symptoms, which is the case in Lyme Disease. Therefore if you are under the age of 50 there needs to be extensive treatment records documenting truly severe symptoms. Further judges will expect to see evidence of visits with specialists and unsuccessful trials of various treatments.

If you are over the age of 50, and even more so if you are over the age of 55, the odds begin to shift in your favor.

Because Lyme Disease can and often does produce symptoms that limit you physically, you can argue for disability under the Grid Rules as well as a functional capacity argument.

In several recent Lyme cases I have successfully argued that Grid Rule 202.06 applies because Lyme, especially cases where treatment was delayed, can cause both physical and cognitive limitations and negate any transferable skills.

While it is always helpful to have treatment records from specialists in the file of a 50+ claimant, there is an unspoken bias in the SSD system in favor of older claimants. Although the grid rules only apply to cases where there are physical (exertional) impairments, your over 50 status will help you even if your primary Lyme impairments are cognitive or fatigue based. SSA recognizes that claimants over the age of 50 with a significant medical issue will have a very difficult time finding a new job.

Use Non-Medical Evidence to Strengthen Your Case

Lay evidence from family, friends, or (especially) former coworkers—submitted via the SSA-3380 form or narrative statements using form SSA-795 can strengthen your case.

These third-party statements are particularly effective in documenting:

• Daily fatigue and need for rest
• Difficulty with memory, attention, or completing tasks
• Mood changes or social withdrawal
• Changes in personal hygiene, routine, or mobility

Without question, SSA makes it difficult to win disability benefits because of symptoms associated with Lyme Disease. However, it has also been my experience disability judges uniformly recognize that Lyme Disease is a real and legitimate ailment so the challenge is to prove that your symptoms create a work preclusive level of impairment.

So if you are struggling with symptoms associated with chronic Lyme Disease and do not have the stamina or mental capacity to hold a job, the disability option may be a viable path forward.