LYMEPOLICYWONK: Chronic Lyme disease patients suffer high unemployment and disability
LymeDisease.org’s recently published survey found that patients with chronic Lyme disease reported low quality of life. They had more days that were bad physically than the general population and than most other diseases. They suffer high rates of unemployment and disability. Even those who are able to work, often must stay home ill or reduce their hours. At work, many say they were unable to concentrate. The survey paints a graphic picture of lost productivity among those with chronic Lyme disease.
The results of the LDo survey of over 3,000 patients with chronic Lyme disease are alarming. At some point in their illness, over two-thirds patients either had to reduce work hours, modify the nature of their work performed or quit work altogether.
Roughly 42% of respondents reported that at some point in their illness they have had to stop working as a result of Lyme disease, while 25% had to either reduce their work hours or change the nature of their work.
Patients who continued working missed roughly 15 days of work during the preceding year. While at work, they were unable to concentrate for 42 days in the preceding year due to illness.
Almost 25% say that they have received disability at some point in their illness. Our previous study also reported disability rates of about 25%, with most disability lasting more than two years. Approximately 23% of patients required special medical equipment as a result of Lyme disease. Many required either a cane (14%) or a wheelchair (7%).
Loss of productivity results when chronically ill workers are unable to work, reduce their work hours, take excessive sick days or perform below par while at work. It exacts a toll on the worker, the worker’s family and the employer. Ultimately, the government and society also suffer because of the reduction in productivity of these compromised workers.
All of this means that Lyme patients who remain ill suffer economic hardship and place a heavy burden on their families, employers, and society. These figures tell a start tale of cost of broken and shattered lives—a cost that continues year after year until their quality of life improves.
The study was a joint effort of LymeDisease.Org and Prof. Jennifer Mankoff at Carnegie Mellon University.
The LYME POLICY WONK blog is written by Lorraine Johnson, JD, MBA, who is the Executive Director of LymeDisease.org. Contact her at lbjohnson@lymedisease.org. On Twitter, follow me @lymepolicywonk.
RESOURCES:
Johnson, L., Wilcox, S., Mankoff, J. and Stricker, RB (2014) Severity of Chronic Lyme Disease Compared to Other Chronic Conditions: A Quality of Life Survey. PeerJ, DOI 10.7717/peerj.322. (Open access.)
The press release for the survey is here.
This blog is part of a series on the Quality of Life Survey, which includes:
Survey Results Published! Chronic Lyme Patients Suffer Poor Quality of Life and High Rates of Disability and Unemployment
Johnson L, Aylward A, Stricker RB. Healthcare access and burden of care for patients with Lyme disease: a large United States survey. Health Policy. 2011 Sep;102(1):64-71.
Study Finds Coinfections in Lyme Disease Common
How many of those with Lyme disease have the rash?
I got lyme disease while at a dude ranch where lyme is and on my 3rd day there I felt something under my chin and it was very small but I knew it didnt belong there and took me 15 tries to get it out and I did and I threw it on the table and one worker said it was a tick. Little to my world I knew they of them but not alot and went on with my vacation and 3 days later my back shoulder bone were in severe pain and thats when I started to feel things digging into my knees and everyday I got worst. I went to work and found myself in tons of pain so I went to my dr. who I explained what happened and he had blood work done and still waiting for results I’m getting worst and worst and I barely can walk and pains all over every part of my body. No Abx. went in hospital had a lumbar so painful still no Abx. Had to leave my job because I was suffering so bad and no one was helping me and it got worst and worst. Well I went passed the time to treat it a few months and finally went to another dr. gave me 21 days of Abx on the spot after she reviewed my blood work. Said I was cured but NO I’m still suffering and now I have to see a shrink because its all in my head and I’m still suffering and feel I’m mistreated by not being treated for my pains that are real and not in my head… its in my body.
Can someone help me? I know I’m not alone. Any dr. that knows how to help me and ease this on going [pain] thats in my head oh please.
The CDC does nothing and knows their test are all a bunch of bull and their guidelines are so wrong. They should all be replaced with dr. that care and want to help.
I hate what they are doing to me and they cant hear me when I say its in my body not my head… Help
Carmela, I’m so sorry you’ve gotten tick fever. My boyfriend has it as well. He was not diagnosed in time and suffers greatly. He has not found any doctor to help him that has any great knowledge of tick fever. Have you found any help? And if so would you mind sharing? He has pretty much given up and it breaks my heart. He has no faith in doctors anymore. Please is there anyone or anything that has given you help or hope? Thank you. Btw, my boyfriend lives in Arkansas and apparently they don’t recognize tick fever there. because of worry with tourism. Horrible isn’t it!
Don’t know if you check back at this site still or not, but here goes! I fought the “all in your head -just take antidepressant” battle for ten years! Seizures, inability to walk, sudden vision loss are NOT anywhere on the long list of proof of depression! And neither are MRI results showing “white matter hypersensites” or demylenation.
I highly recommend starting with Dr. Horowitz’s books – Why can’t I get better?” or the new one “How Can I get better?” Dr. Horowitz outlines herbs, antibiotics, tests and complications -thyroid problems, adrenal fatigue etc PLUS co-infections, and lists doses and treatment plans. If you are still in the stage of illness that you can’t read (or remember what was read) have a non-sick person help you. Underline sections in the book that you relate to/have symptoms like, take notes, then find a doctor without a big ego who will review the sections with you and allow himself to be guided by a TOP DR. IN THE FIELD. These aren’t someones anecdotal “how I fought ‘Lymes’ books.
If possible, talk a local quack into at least drawing blood and send for the detailed testing at Igenex labs. Usually, even the most incompetent doctor won’t deny SOME treatment and prescriptions to a patient with confirmed blood work. If you are armed with the COMBINATION of antibiotics needed in a late-stage Lyme victim ahead of time, hopefully the Doc will follow the suggestions. (there is even a physician’s section in the back of the book to help!
Please note: even if Igenex doesn’t show a positive, it doesn’t mean you don’t have Lyme. The longer a person is sick, the weaker their immune system, the more Lyme may go into cyst or hidden forms – meaning it won’t be in the blood stream – and the tests aren’t perfect. Again, though, armed with the information in the books, you may be able to prove your case to a doctor.
Stephan Buler’s website and books outline an herbal approach, as does Dr. Cowden’s protocol. The advantage to either is anyone can buy herbs. (I liked Cowden’s protocol because it came with dosage sheets – they showed the herb, the time to take it, and a checkbook so you could remember whether you had or not!). Also, they work. For me though, I had to add antibiotics like Ceftin to get it out of my brain.
I might add, don’t give up! Believe me, I KNOW how extremely difficult it is to fight for treatment when all you can do is crawl to the bathroom,your once athletic body is betraying you, your once sharp mind is nearly blank (I would get lost driving home and couldn’t recognize my own house). I couldn’t do any of the things I loved, nor read, so there I’d sit in PAIN and despair with no diversion. I would tell the few friends I had left, “the only thing worse than having Lyme is trying to fight with these doctors for treatment. ”
For further treatment tips and emotional support, I have found Tired of Lyme (all one word) blog very helpful. Good luck!