How Do I Prove I Am Disabled When I Have Chronic Lyme Disease?

image2-1

If you are applying for disability for Lyme disease, you’ve probably heard that it’s really hard to get approved. It is!

Yet many of our readers with Lyme have gotten approved – sometimes fairly quickly. How did this happen?

To answer this question, we took a survey of people with Lyme disease and asked: What Diagnosis Helped You Get Approved For Disability?

Many people were approved for Lyme plus a combination of other conditions caused by the Lyme or related to the Lyme. On the other hand, some people were approved based only on the other conditions and the Lyme is never even mentioned in their approval!

How Do I Prove I am Disabled from Chronic Lyme?

Although Lyme Disease is sometimes a factor in approvals, Social Security does not have any specific rulings or listings that recognize Lyme disease.

Here’s the strategy most folks use: They figure out which symptoms or other conditions are caused by the Lyme, then they gather evidence for those.

The medical tests that can help prove your condition are different for every person. The best thing to do is talk to your doctor or do your own research to see what types of specialists and tests are appropriate for your specific conditions and symptoms.

Below are a few examples of tests other Lymies have found helpful.

Cognitive Problems

✨ If you have developed problems with memory, focus or concentration, many people report that neuropsychological testing was helpful for their disability case.

✨ Brain scans in combination with neuropsych testing is even better! Types of brain scans sometimes helpful in Lyme cases include: QEEG, PET scans and SPECT scans. In some cases, MRIs can help, though these do not always show results. Some of our readers report that Functional MRIs were more helpful.

Mental Health

✨ Mental Health can be very important in Lyme disability claims, and many people with Lyme are approved for psychiatric conditions. If you experience mental health symptoms, please learn a little more about: How to Document Mental Health for a Disability Application

✨ Many Lymies are upset about being told their problem is psychological and they don’t want to include mental health in their disability application. You are right to be pissed off, but if you sabotage your disability application, you will not be happy in the long run. Here’s a better idea: Get approved for disability, and then use your anger to become a kick-ass Lyme activist.

✨ There is an exception for people who are applying for employer-disability: How to Include Mental Health. Or How to Leave Out Mental Health.

Chronic Fatigue Syndrome

✨ Many people with Lyme also experience Chronic Fatigue Syndrome. Social Security has a special ruling on Chronic Fatigue Syndrome.

✨ Learn more about How to Apply for Disability for Chronic Fatigue Syndrome.

✨ This page on How to Get Tested for Chronic Fatigue Syndrome includes many tests that may also be helpful for Lyme Disease patients.

✨ Although Social Security uses the term “Chronic Fatigue Syndrome,” many doctors and patients use the term “Myalgic Encephalomyelitis” or “ME.” Learn more: How Do I Know if I Have ME?

Fibromyalgia

✨ Some Lymies who have widespread pain are diagnosed with Fibromyalgia. Learn more about: How to Get Approved for Disability for Fibromyalgia

✨ If you are experiencing pain or symptoms of Fibromyalgia, an assessment by a rheumatologist may be helpful.

Lyme Disease Blood Work

✨ Reader’s report mixed responses in this area. In some cases, Lyme blood test results were helpful, and in other cases, Lyme blood work made absolutely no difference in their disability case.

✨ Social Security has no guidelines on Lyme Disease, and you can’t rely on this type of blood work to be important.

✨ If you’d like to improve the chances that your blood work results will help your case, here is one thing that can make a big difference: If your doctor lists these test results (plus anything else relevant) as part of a medical opinion letter or an RFC form, this may make a difference. Social Security may find that these test results form a basis of medical evidence for your doctor’s opinion.

Other Tests

Talk with your doctor about your symptoms and what other types of tests might apply to you. Other tests some of our readers have found helpful:

✨ If you have developed neuropathy, you can request nerve damage testing.

✨ If you have heart problems, you can request testing from a cardiologist.

✨ For joint problems, x-rays showing joint inflammation can be helpful.

✨ This page includes information on testing for Fibromyalgia, POTS, Chronic Fatigue Syndrome, and other related conditions: How to Get Medical Tests While Applying for Disability.

“Are My Lyme Blood Test Results Good Enough?”

Many people are concerned with exactly what their Lyme blood test results say, or exactly which Lyme tests they should or should not take. Our best advice is: Do not put a lot of energy into worrying about this.

Social Security has no rules or policies addressing Lyme test results, and there is no way to predict how the person reviewing your case will interpret your test results, or if they will even attempt to interpret them, or if these test results will have any impact on your case at all.

All you can do is offer your own doctor’s medical opinion about this test, and hope that Social Security accepts this.

PROVING FUNCTIONING

Medical tests can be a huge help to your disability application, but equally (and often more) important is proving that you cannot function or work. This can be done through your medical records, doctor’s letters, forms you can bring to your doctor, certain types of medical assessments, statements you make on forms, things you say during a hearing, support letters from friends and family, and many other ways: How Do I Prove I Can’t Function?

DOCTORS

Some people think that a doctor who is good at treating Lyme will be good at helping you get disability. And a doctor who sucks at treating Lyme will suck at helping you get disability. This is not true. These two things have nothing to do with each other.

Any doctor who believes you are disabled and wishes to help can be a great support in documenting your condition. A doctor who does not believe in Lyme can still help your disability application. Here’s Strategies for Talking to Your Doctor About Your Disability Application

Many doctors are not familiar with Social Security policies. If you learn a few of the regulations for what is needed, you can show your doc what kind of documentation will be helpful. Here’s How to Work with Your Doctor to Get Great Disability Documentation

Or how to find a doctor: How to Find a Doctor to Help With Disability Documentation

If you are looking for a doctor, you can also take a look at this reader survey: What doctor was the most helpful for your disability approval?

Lyme Literate Doctors

Many people with Lyme Disease go to “Lyme Literate Doctors.” If you are seeking a Lyme Literate doctor, check out ILADS Doctor Search. Keep in mind: a Lyme Literate Doctor may be very helpful for your treatment, but this does not guarantee they will know anything about Social Security regulations or what is required to help someone get approved for disability. Maybe they will, and maybe they won’t.

Many Lyme literate doctors are Naturopaths. Unfortunately, Social Security does not recognize Naturopaths in the same way. A Naturopathic doctor can help support your disability case, but these cannot be the main records that get you approved. You would need another doctor to create records, and then anything from the Naturopath could be supporting material that make your case even stronger. Social Security Acceptable Medical Source Regs

SUCCESS STORIES

Smart people who took smart steps to get approved with Lyme disease. Here’s how they did it:

Lotus Wins Her Case with a Doctor’s Letter

Daisy Wins Her Case with a Doctor’s Letter

Violet Wins Her Case with Function Forms

Sweet Pea Gets Approved in Four Months (without a lawyer!)

Jasmine Gets Approved in Six Months (without a lawyer!)

Poppy Wins Her Reconsideration in 5 Easy Steps

Cherry Blossom Finds Secret Medical Records

Buttercup Makes the Best Application Ever Seen

Connie Gets a Doctor’s Letter

Dahlia Finds a Surprise in Her Medical Records

Acacia Gets Approved Through Observations

CAUTIONARY TALE

Taking steps to improve your case, and learning some of the things above can be a great help to you. Patty had chronic Lyme Disease. She had great medical documentation, but no one ever told her about the Acceptable Medical Source rules or the need to gather certain kinds of documentation.

Patty wanted to share her story to help others: How Patty’s Lawyer Never Told Her What She Needed to Know

LEARN MORE

Loads more things to read and learn: Disability for Lymies

Facebook group: Social Service Connections for Lyme Disease

If you are starting a new application and would like to take extra steps to try to get approved quickly, check out: How to Get Approved for Disability The First Time You Apply

The fantastic comic at the top of this page is by Miss Diagnoses. Come learn more about The Lymie Adventures of Miss Diagnoses

Updated April 2018. Please comment below with stories, ideas, questions or suggestions. Please let us know if any links on this page stop working. If you found this page helpful, please share it with others by pressing one of these magic little buttons: 

4 thoughts on “How Do I Prove I Am Disabled When I Have Chronic Lyme Disease?”

  1. I remember sending you this info earlier when i read 1 of your posts that LYME DISEASE is not listed in the blue book.

    IT IS….look under 14.08 !! but that is ALL that is mentioned; it does not expand on things at all. so read that part carefully ok all 😉

    bettyg, iowa

    it took me 5 yrs. of hell to be approved on my 2nd ssdi app after my lawyer in arizona, QUIT me 4 years into this!!

    he returned my 2 apps; i read every word in my 2nd app (+ 1st one).

    i had looked thru the blue book sections of POSSIBILITIES where my medical records would ADDRESS those issues!

    so i wrote down those things and showed the section, and all info after it where it could be found, page, etc for EACH thing i found.

    this procedure took me 7 months to do!! by then i sent a copy to admin law judge’s office to go into my file since i was awaiting a date to meet 1 on 1 with them.

    it ended up being a teleconference! HEAD honcho was my judge this time.

    1st app i/my lawyer NEVER RECEIVED a letter telling us when the al judge hearing would be.

    my lawyer’s staff were frankly incompetent; so i called dds staff asking.

    they found a copy of the letter alledgely going to me/lawyer but neither of us received it.

    since i called dds office about all this, head honcho admin law judge CALLED my arizona lawyer chewing him out that his CLIENT/ME called them. that was HIS job.

    that was when he quit me since “his staff could NOT please me ever”! that’s right.
    examples:

    * his office taking at least 8 MONTHS, not days to answer short questions i FAXED there!

    * never returned phone calls, etc.
    * i would keep copies for MYSELF; noted that on every sheet i mailed them. they would COPY AGAIN and would CHARGE me for this!!

    * he did represent me at 1st aljudge hearing. never met him BEFORE then. spent 30 minutes with me prior with 1st business.
    * sign a paper saying he will get MORE MONEY if WE WIN than what i signed earlier! gave me no notice of that earlier.

    * when he was quitting me, they were going to charge me copies they sent me ALREADY copied by me earlier.
    * overnighting me letter of hearing we never got before!! i already knew that info; 1st class mail was ok.
    * charges like this over and over.

    * finally during all this, he said he would NOT charge me for anything including his air flight, motel, renting car, etc. he just wanted to get rid of me!!

    * then he was kind enough to send me both files back which i read thoroughly! explained above.

    this was my example on what you had below. you are a very gifted WRITER writing in user-friendly language so we can understand and have SHORT paragraphs for us neuro cognitive patients.

    fyi, many lyme patients do NOT like to be called “lymies”; it’s DEMEANING to them. so please consider NOT using or editing what you’ve done just showing lyme patients or tick-borne patients, etc.

    betty gordon, iowa
    49 yrs. chronic lyme/bartonella patient
    35 yrs. misdiagnosed by 40-50 drs.

    Like

  2. I’ve been on disibilty for over a year now. It was my seizures that initially got my disability going. I had my chiropractor get xrays of my hands, hips and neck. By this time my hands were really bad. My positive Lyme tests and MRI did everything. They didn’t give me any problems once they saw the Lyme tests. I hope this helps. Lyme is recognized in Michigan as a didability but they want to see more than one positive test. It was my positive test in 2005, 2010 and my 2016 that helped my case the most.

    Like

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s