TOUCHED BY LYME: Financial destruction from Lyme disease
The illness damages more than your body. It can also demolish your bank account.
We all know how hard it is to get accurately diagnosed with Lyme disease. Even with a known tick bite and a bull’s-eye rash, people are too often told by their doctors that they can’t possibly have Lyme because “there’s no Lyme in this area” or “that’s not a bull’s-eye rash, it’s ringworm” or “(fill in your own stupid reason here).”
We know that delays in treatment let the spirochetes burrow into your body where they become hard to eradicate and cause even more problems. And that finding a proper diagnosis and appropriate treatment is difficult, expensive, and typically not covered by insurance. On top of that, you’re probably too sick to work. Before long, your finances are in tatters.
This morning I received an email from a 37-year-old woman in Los Angeles who has been hideously sick for two years. It began with a tick bite and a bull’s-eye rash. (See paragraph one for what her doctor told her.) She faces eviction and is all alone.
“I’m now at my lowest, most scared point of my life. …I was already sick everyday as the Lyme has definitely gone into my joints and my brain. I can’t focus, think straight and literally walking to the store just to get food is hard on me…I now owe the landlord 3k and he is about to begin the eviction process…I filed for disability but it takes 6 months and that’s if I’m approved. I have no one to help me.”
Her story is heartbreaking, but far from unique. Via email, on-line Lyme discussions, and support groups, I hear from many other people in circumstances just as dire. People sick with Lyme don’t just need the right medical treatment. They need food and shelter, too.
If you or someone you love is in this situation, here are a few suggestions:
Find out what resources are available through your state or county. One place to start is at benefits.gov, an official website of the US government. It tells you what benefits you may be eligible for and how to apply. Click on your state to find specifics about food and housing assistance.
Some aid programs are administered through counties, which may have websites and help lines. For example, Los Angeles has the County Department of Public Social Services. The website is
Programs can vary from place to place. According to the Los Angeles County website, the CalFresh program (previously called food stamps) allows qualified elderly, disabled, and homeless recipients to purchase hot, prepared meals with EBT cards at approved restaurants. (If they are unable to prepare food for themselves.)
The charity “Feeding America” has a nationwide food bank locator on its website.
The website of the National Association of Area Agencies on Aging also provides a lot of information about services available to older and disabled Americans.
For a list of Lyme information resources, which include a few avenues for financial assistance:
A Lyme patient maintains a website called Lyme Underground, which includes a section called “Getting By on a Limited Budget.”
I wish I had a magic wand that could fix everybody’s health and money problems. Since I don’t, I hope some of these suggestions will prove useful to Lyme patients who feel they’ve reached the end of their financial tether.
If you are not sick yourself but know someone struggling with financial destruction from Lyme disease, perhaps you could help them look into some of these programs. And if you know of other helpful resources that aren’t mentioned here, please send me the information. I’ll do my best to spread the word.
TOUCHED BY LYME is written by Dorothy Kupcha Leland, LymeDisease.org’s VP for Education and Outreach. Contact her at firstname.lastname@example.org.
- January 10, 2014 at 1:28 pm
My three girls and I all are very ill from Tick Borne Infections…my three girls have been born with all of this…they have only known pain and illness. I have been ill since 14 yrs old but unable to work since 15 yrs ago.
This has taken everything…nothing left to sell or trade….we are devastated beyond anything we have ever thought –
I pray for you and I pray for all of us – miracles happen … need something soon…. peace and love
- January 10, 2014 at 1:31 pm
Thank you for writing about this very important subject. Those of us who are unable to work and have no financial support are most likely destined to lose everything — and that’s a LOT of people.
- January 10, 2014 at 2:08 pm
thank you for more links of good info!
i’ll add to my links i send folks which you have already.
i’ll send this to someone i just got done sending a PM on this very situation.
bettyg, iowa activist
- January 10, 2014 at 3:02 pm
Thank you for sharing all that wonderful information. I am certain there are many, many people who will benefit from it. Getting SSD is possible, but you have to be prepared (have copies of all your medical records) and ready stand up for yourself. A Lyme diagnosis probably won’t qualify you, but if you have documented evidence of other diagnosis’ (which in many cases the Lyme is the root cause) then you have a good chance of winning your case. I found it very helpful to get specific “disability evaluation” forms from Social Security and have my own doctors fill them out. Plus I had my physical therapist do one too. When filling out the standard forms required I sometimes had to attach a sheet to the “comments” section because I had a lot to say! lol Just don’t give in or give up.
- January 10, 2014 at 4:05 pm
It took me 3 1/2 years to get my SS disability and disability retirement from the State of Maryland but I did it with a lot of paperwork on my part and my doctor. From what I understand, I was the first in Maryland to achieve it in 1999 with a Lyme diagnosis. Keep filing and maybe someday someone will sit up and take notice that this is a very real devastating disease.
- January 10, 2014 at 3:08 pm
Fortunately there are several alterntive therapies that can really reduce the symptoms of lyme that cost very little. Im using a very strong colloidal silver and others are having some success with MMS. Treatment can take over a year.
- January 29, 2014 at 1:54 pm
I am in the same dire predicament of having the place where I am staying going up for sale. I live in Philadelphia, PA and have been on a waiting list for a subsidized apartment for 4 years, but the average wait is 12-13 years! This city is overwhelmed with poor and homeless people, including entire families with children. All homeless shelters are horrible places to stay that only let you in at night to sleep, but even they are filled at 140% of their capacity. Food banks run out of food before many eligible people get there share. Many of the services are provided by private charities, which is often touted as the best route to deal with these issue, but I know from experience that this has been a total failure. One may contact our local United Way and get a huge “resource” book only to find many are defunct and the rest are unable to provide services to newcomers, as they are overwhelmed. The resource book is a cruel lie that is often used to show the ignorant that there are a multitude of services and resources. I was told by my local committee person that if I get evicted I will be shown outdoor sidewalks where the homeless may sleep without being chased for loitering! That is disgraceful this city cares for those who need help the most. Our City Council also passed a law forbidding feeding a homeless person in center city, punishable by a hefty fine! Clearly they just want the homeless to go die in a hole somewhere that the sight of them wont offend tourists or the wealthy residents in the area. Please excuse ant typos or word omissions, I have advanced neurological Lyme. It took me a long time to type this.
- May 3, 2014 at 8:06 pm
I totally understand. My son and I both have chronic Lyme. I have basically run my parents through the ringer because I cannot afford to pay for our treatment on my own. I carry 3 types of insurance and the doctor I am with now, who is a genius, doesn’t take insurance. So I sympathize. I really do. Thank you for writing this post.
We invite you to comment on our Facebook page.
Visit LymeDisease.org Facebook Page