TOUCHED BY LYME: Filing for disability benefits when you have Lyme disease

12th August 2011


Guest blogger & Lyme advocate Barbara Arnold, an attorney who practices disability law in Berkeley, CA, explains some of the factors involved when a Lyme patient files for SSDI.

If Lyme disease has compromised your ability to earn a living, applying for Social Security disability may become necessary. Having a sense of the legal requirements can help you prepare an application or work with an attorney to present your claim in the best possible light.

Each disability determination is highly fact-specific, but it is helpful to understand how the particular facts of your case will be evaluated. Federal disability rights consist of two distinct programs: Supplemental Security Income (SSI) and Social Security Disability Insurance (SSDI). Both programs provide recipients with funds and medical coverage, but have different threshold requirements that have nothing to do with disability. To qualify for benefits, SSI recipients must have little or no resources. SSDI recipients must have a sufficient work history. Only after these threshold issues are met can the evaluation of one’s disability begin.


Both SSI and SSDI require the recipient to meet the 5-part Sequential Analysis. The steps in this analysis are as follows:

Step #1: Is the claimant engaged in substantial gainful activity (SGA)?

SGA is currently set at $1,000.00 per month from earned income. Anyone making more than this amount is deemed not disabled. This amount relates to earned income only. A person who receives money from unearned sources (investments, interest, gifts, etc.) remains entitled to receive benefits, provided that person otherwise qualifies.

Step #2: Does the claimant have a severe impairment?

For Lyme patients, Step 2 poses a significant hurdle. Since Lyme disease lacks a single diagnostic tool, applicants must be prepared to demonstrate that their condition is “medically determinable” by other means. “Medically determinable” means that signs and symptoms establish the existence of disease or impairment. Signs are diagnostic tests and similar findings. Symptoms are patient-reported problems. For an illness like Lyme disease, patients can demonstrate that their condition is medically determinable by submitting articles and treatment guidelines about the nature of Lyme disease and the proper method of diagnosis.

Step #3: Does the impairment meet or equal a listing?

Meeting or equaling one of the conditions enumerated in the Listing of medical impairments entitles a claimant to a finding of medical disability. The Listing is found in the Code of Federal Regulations, which is available on the Social Security website. Although Lyme disease is not mentioned specifically in the current set of listings, there are a number of pertinent conditions which are listed. If you can document that your conditions equal one of these descriptions, your claim can be approved at the third step in the sequential analysis, and you will not have to address the fourth and fifth steps. Some diagnoses to consider include inflammatory bowel disease, diseases of the musculoskeletal system, neurological and mental disorders. You will have to go through each of the criteria enumerated for these conditions to see if your impairment equals the listing.

Step #4: Can the claimant perform past relevant work?

Even if your condition does not meet or equal a listing, your claim can still be approved under the fourth and fifth steps of the sequential analysis. These steps are known as the vocational factors. In the fourth step, the Social Security Administration will evaluate your residual functional capacity (RFC) to determine if you can perform your past work. RFC involves your physical and mental capacities in light of your impairments. SSA assesses your ability to perform physical and mental tasks, such as sitting, standing, lifting, carrying, concentrating, and decision-making. The analysis of RFC is multi-layered and highly fact-specific. It is divided into sedentary, light, medium, and heavy work classifications and can be enhanced or diminished according to age, education, and experience. If your RFC assessment shows you cannot do your past work, the analysis proceeds to the fifth and final step.

Step #5: Can the claimant perform other work?

The Social Security Administration will assess your RFC to determine whether there is other work you can perform. For many Lyme patients, RFC is below sedentary (work at a very low level of exertion), due in part to pain, fatigue, and cognitive disruptions. Documenting these impairments in your medical record and in the narrative part of your application are essential to demonstrating that your condition renders you incapable of working.

As you can see from the above description, the disability evaluation process is complex. Each disability claim is fact-specific and there are few absolutes that can provide a sure-fire strategy. Having a knowledgeable doctor on your side and a medical record that documents your symptoms are essential to meeting the requirements of the 5-Part Sequential Analysis. It may become necessary to work with an attorney experienced in this technical area of law, especially if your claim is at first denied.

Barbara Arnold is a past chair of East Bay LEAPS, a Lyme support group that meets monthly in Oakland, CA. She has testified about the challenges faced by Lyme patients to the San Francisco Board of Supervisors and has organized Lyme awareness events at the East Bay Regional Parks. Her disability law practice is located in Berkeley, CA. Her website is


27 thoughts on “TOUCHED BY LYME: Filing for disability benefits when you have Lyme disease

  1. RE: "A person who receives money from unearned sources (investments, interest, gifts, etc.) remains entitled to receive benefits, provided that person otherwise qualifies."
    Does this include ongoing residual income which people have little control over?

  2. I applied for Ssdi and was denied, now I need to appeal, should I obtain a lawyer and are they expensive, I do I get accepted for Ssdi, I have been out of work for 9 months with chronic Lyme, Cfs and Fybromyalgia, we are so broke, I need help ASAP. Thank you so much.

    • You don’t have to pay an attorney out-of-pocket. They get paid if you win your claim and the fee is already set by the govt. 25% of your back pay up to $6,000.

      (just saw this was years old thread…)

  3. In September – Let's provide Back-to-School NATIONAL TICK BITE (Bb)/AIDS and COINFECTION AWARENESS, Prevention, Education, Diagnosis and Treatment following (ILADS) Standard of Care in our school systems (and again in May) –

    We need educators, a documentary, books and pamphlets for our schools promoted by national sponsors.

  4. Myself and others I know have been successful when Social Security was provided with an in depth letter from YOUR DOCTOR explaining in detail what your specific limitations and medical problems are. You can help your doctor with this.

    • Im 18 years old and no longer live at home, I was diagnosed with lyme disease a year ago and still continue extensive treatment. I had to continue high school online because I was unable to make it to class enough. I was let go from my job because of my fluctuating and extreme symptoms. Im really not sure of how to go about proving all of this and getting started on my claim. Will they take me seriously?

      • Amanda, I see you posted this months ago but just came upon it. They should take you seriously but you have to have medical documentation form MDs. Best to ask for a copy of your patient notes after they are done ( week after apt) to see that your doc is taking the time to properly put in all of your symptoms and challenges. I found out after my first ssdi round that pain management doc was NOT putting in everything we discussed and was making up things to put in the review of symptoms. This documentation is key. They will take you seriously but they will not take your word for it must be documented from the last time you were unable to work. Good luck. Its a crazy system and is very frustrating. I ended up hiring a lawyer and even that had its problems. I am on round 3 waiting to see if a judge will vote in my favor. Best to you, Cat

  5. i was diagnosed with Central Nervous Systems Lymes Disease last year. I have lost my health, my (state) job, my health insurance, my car, my home, my dignity. I have been trying to get SSDI and SSI, but seems as though that may be a losing battle. I am extremely sick and depressed and afraid I may lose my life over this ordeal….cannot find help, every day is despair and I become more frustrated with each passing moment. No one seems to understand what I am going thru….my husband divorced me (after the other diagnosis, explained further in message), current boyfriend is trying his best to be supportive but struggling to get by, after I lost my job and current income is the bare minimum (due to economy and his loss of job(s) and trying to find work) my children have declared me a "toxic person" to be around, my sibs just want me to "get over it". I have struggled with one thing or another almost my whole life and then get hit with this disease, on top of another nerve disease, "Reflex Sympathetic Dystrophy" from 17 yrs ago. Not a good life. Found you, while online looking for support groups or whatever info I can find on Lymes Disease. Is there anyone out there that can help? I know you are from California and I am in Maryland, but if you know of anyone or anything, I would appreciate it. Thank you, Kelly Ann Voyce

  6. Pingback: TOUCHED BY LYME: Filing for disability benefits when you have … « Better Disability

  7. I am going through the disability process for lyme. I was already denied,appealed the decision, went to admin judge, instead of a decision I was sent to a mental evaluation,and a medical eval today. I was crying after the medical evaluation was over. The docotor was pretty nasty, implying that I am lazy because I cant exercise or clean the house. I am posting this because I want other people to know, you are not alone in this struggle. The reality is people are so ignorant when it comes to lyme. Stay true to yourself and do not listen to what other people say.You know how you feel. I have learned who my true friends are during this experience. I would not wish this illness on anyone, even that nasty doctor. I am confident I will get better. I am blessed with a wonderful boyfriend who has stuck by me through this process. I let him know often how much his help has meant to me. Like most people with this disease the bills are piling up, and we are drowning in debt. But I am thankful to be alive. people with other illnesses are not so lucky. I will post again when I find out if I get denied again. Thanks for your time- shannon

    • Your post hits so close to home for me it is scary. I have been struggling with lymes disease for two years now and have lost everything except for my family. Graduating college starting work and then having to face losing my job because I kept getting weaker and injuring myself at work due to my illness. Student loans up to my eyes and medical bills sky high I am at a loss. I have not applied for SSI or SSDI because I know what a battle it will be and do not want to be picked apart by emotionless people who do not believe I am in pain because they cannot see it. You give me hope that maybe it can be done. I hope everything has worked out for you.

    • Sadly, the experience you relate is not an anomaly. It took me three years: 2 denials ,3 hearings to get approved.
      This was after I had to battle my own lawyer (a separate bunch of craziness) and went through a ‘physical abilities’ test (which had me in tears most of the time from pain, and left me sick and uable to move for a week) and a medical exam in which the doctor intimidated me , and then was so rough he sent out of the office doubled over in pain, and left me unable to move for days. He was ‘checking’ my liver (the only thing we would discuss that day he told me – and then warned me not to even attempt to discuss any additional symptoms) and even when I jumped and screamed in pain he continued to push as hard as he could. But again I was intimidated into silence. ..if you are “not cooperative” your case can be thrown out on his word.
      Horrific experience.
      I am coming up on my 3 yr review next June..anything I should do in preparation? ?

      • I am so sorry to hear of your experience! I had a lot of other diagnosis’s so tried to focus on those rather than on Lyme – Hashi, failed back surgery, migraines, osteo arthritis. I focused on using those diag. codes. I have just had my first hearing before a judge and waiting to hear how she rules. I would be interested in knowing how to prepare for 3 year review also. All the best to you.

  8. Recently diagnosed with Lyme, caught it early, but it still started to make my brain foggy at times. I am reading everything I can find about this so I can try to stay on top of recurring symptoms. Dr. finally gave me 30 days of Doxicycline, and I sure hope that works. I seem to be getting better, but it’s a very slow process. I would like to check into whether recurring symptom Lyme qualifies as a disability. If it starts messing with my brain again I may not be able to continue working. Also are there any support groups in the Northern VA area, around Reston, Fairfax etc. Thank you.

      • I get stiff necks and my brain seems to get foggy sometimes. I also experience constant fatigue but I push and push but tire out easily. Ticks are bad in Virginia. I dont know what to expect of life but plug along with this disease.

  9. Does anyone know if it has been more successful in some states than others? Does anyone have an idea about Florida?

    • I see a doc in winter park. Misdiagnosed by my first primary doctor. Was seeing a new pcp, but then she told me that I was too complex and I should go to a doctor in Pennsylvania because they don’t know anything about Lyme in Florida. A friend told me about this doctor in winter park. His protocol seems to make sense, but I have a long way to go. I’m no longer working. Just wondering about disability. Have worked all my life and this is very foreign to me.

  10. To Christi and Kathleen,

    I live in Dumfries and would love to speak with you regarding Lyme disease. I was diagnosed almost 20 years ago and received medication and that I thought was it. For years my symptoms kept getting worse until the brain fog and just plain exhausted. I was diagnosed last year again and was told I probably have had it for over 20 years. My primary doctor does not believe the test so he will not treat me and I am looking for a new Dr. Would love to chat!

    • It is critical to have a good LLMD and push for quality medical care. You must talk with others, read and google. Lyme is a huge health problem but not yet politically correct. The science & clinical data accumulated over 30-50 years is now huge… It has become a big worldwide problem. Sometimes we can beat it & if not, it can be reduced or at least controlled, usually, but it takes combined integrated approaches over a sustained period…. It is not simple, cut&dried to treat. It is avoided by many doctors who want to stick to simpler illnesses which are not political issues. Contact (physician nonprofit group for sharing medical info among practitioners, have annual conferences worldwide) for some LLMD’s in the DC MD & VA tristate/city region. You are fortunate there are several good ones here. Some patients drive or fly in from other states to see them. For reading, look up Dr. Burrascano’s guidelines essay, Dr. Horowitz’s book, Connie Strasheims’s book on various treatment approaches, Schaller’s books, and there’s more. Tons of info online. Contact which is your local area’s volunteer awareness/education informational & support group started by patients & their families; they are online & you can call or email.

  11. I was approved in July for disability retirement from my teacher retirement funds. It is good for one year. Can I also get SSDI? Is it enough to show them I am already qualified with work as disabled or do I need to do the whole process again? I don’t expect to be disabled forever. I hope to return to work * probably not teaching* in a year or twos time. ( the difficulty I had typing this amazes me!)

  12. Hello all,
    My name is Chloe and I’m debating on whether or not I should take on the daunting task of applying for disability. I’m 22 years old and this is the third time my Lyme has returned. I’ve been receiving treatment since September–but no significant improvement yet, so it could be awhile before I am able to work or go to school again…What do you think the chances are if my symptoms are all neurological. Including, severe hand tremor, headaches, vision loss, fatigue and cognitive problems (amongst other things) Any advice/input would be greatly appreciated.
    Thank you! And good luck to you all, stay strong and never let anyone tell you that you’re crazy.

    • I applied for ssdi because we are so in debt. It is a very long and arduous process. My husband was a great support. It would be helpful if you had a support system. So hard when you feel so sick but if you can’t work then you deserve ssdi. Sounds as though you may need to take care of yourself and that is hard to do well when you have Lyme etc and are also holding down a job. Best to you

  13. Can you get both forms of social security? I am on social security disability & someone told me I could get the supplemental insurance too.

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