posted
My partner was diagnosed a year ago with Lyme disease and babesia. She has undergone eight months of iv abx and is now on orals. I was diagnosed with Lyme four months ago and have been on oral abx since. I am working on my Master's Degree in Rehabilitation Counseling. I am doing a research paper on Lyme disease as there has been no research done in my field to date on the subject that I can find. The following is my working abstract:
Lyme disease is a tick-borne bacterium causing illness which has multi-systemic involvement mimicking many other diseases, disorders, disabilities and illnesses. This paper's purpose is to examine existing research on symptoms associated with Lyme disease, diagnosis and misdiagnosis, and the controversy surrounding the appropriate milieu for treatment. The rehabilitative approaches used for disabilities and diseases manifesting similar symptoms will be examined. These approaches will be looked at as a possible model for how rehabilitation counselors provide services and support for those suffering from Lyme disease.
If anyone dealing with Chronic Lyme Disease has any info, suggestions, or input on assisting people in a vocational capacity who suffer from Lyme disease, please reply. My hope is to publish this work to begin a conversation in the Rehabilitation community which will lead to better serving those with lyme who need assistance in the vocational arena.
-------------------- Tania Posts: 13 | From Charlotte NC | Registered: Jan 2006
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Worthless tests & labs, a dangerous vaccine, insurance companies refuse to pay, undertreatment the norm, all about money. MO. Posts: 281 | From CT | Registered: Oct 2005
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posted
Yes, Lou. I work with people with disabilities in a vocational capacity. I'm looking for information on any vocational barriers lyme disease causes and possible work place accommodations needed for these barriers.
Thanks for the post.
-------------------- Tania Posts: 13 | From Charlotte NC | Registered: Jan 2006
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posted
As a teacher I have had multiple problems with Lyme and doing my job well. I have imbalance, fatigue, and seizures. Yet, I was given an afternoon schedule (when Lyme fatigue sets in),not given a teacher's aide (the teacher with MS has a teacher's aide), and have to teach the longest period of the day. No accomodations were made for me.
I cannot stand for very long, so I sit and kids have to come to me with questions. Fortunately, they are very understanding and compliant teens.
I am taking a 4 month leave of absence from work due to the fatigue and seizures and I partially blame it on the lack of accomodations that could have been made for me. PM me if you want more info. Hiker
-------------------- Hiker53
"God is light. In Him there is no darkness." 1John 1:5 Posts: 10177 | From Illinois | Registered: Aug 2004
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mlkeen
Frequent Contributor (1K+ posts)
Member # 1260
posted
Hi Tania-
What a wonderful topic for your project, and with lyme too!
Many stuggle with the need to stay working vs the ability to work. I'm self-employed and work at home. A made many accomadations for myself. I immediately changed how my business was structured so that I could work part-time most days. I reduced the phyical activity needed for my job.
I almost always need a nap in the middle of the day. At my sickest I slept several hours after lunch. I can still grab a power nap if I need it.
Broadly, I would say "time and flexibily", just like sick kids, is what most people need. We can often complete a task. It takes longer.
I could barely type and had a lot of trouble with numbers. I saved those tasks for my good days.
Mornings are my best time. I schedule all meetings then.
Driving is an issue for many.
I hope this is the sort of thing you are asking about?
posted
Yes, Mel, this does help. This is some of the info I'm looking for. Thanks for your response. I have e-mailed Lou to see if I can get lymenet to post a survey for me on their 'post a poll' option. I hope they can accommodate me. If not, I'll be seeking more info from you later.
Thanks, again.
-------------------- Tania Posts: 13 | From Charlotte NC | Registered: Jan 2006
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shazdancer
Frequent Contributor (1K+ posts)
Member # 1436
posted
Interesting topic, researcher. You might find some parallels in the accommodations children with Lyme have gotten in their schools.
Two of the major variables that hit me are:
1.) Patients present with markedly different symptoms.
2.)Symptoms may fluctuate from day to day, even hour by hour.
Having this disease has given me a whole new perspective on the elderly and the disabled. How doors can be so heavy and unmanageable to someone in a wheelchair or with arthritis. How fine print can be TOO fine on a prescription bottle for the patient to read. How bright lights, "new" smells, and noise can be overwhelming to someone with sensitivities.
How background music can make someone with tinnitus virtually deaf to the spoken word. How the person who is speed processing challenged cannot get the same amount of tasks accomplished as someone who is not.
I had the opportunity once (at one of Annie's wonderful Lyme retreats) to design a dance movement class for Lyme patients. Neck soreness, muscle weakness, arthritis, balance problems -- all needed to be addressed or worked around. And the psychological need to find peace, when the disease (and all the coping with it) has one's emotions so scattered.
I think your research can help a lot of people with Lyme find that they can still live independently, and participate meaningfully in society -- with just a little help. And a decent job goes a long way toward self-esteem and independence.
Regards, Shaz
Posts: 1558 | From the Berkshires | Registered: Jul 2001
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trails
Frequent Contributor (1K+ posts)
Member # 1620
posted
Researcher, Where to START?
First I have a partner too and thank god she is lyme free and the best thing since Valium!
Second, what exactly is Rehabilitation Counceling? I mean is it verbal talking b/t you and the client, is it accomadations, strategies, emotional counceling? How does it differ from Occupational Therapies? I know OT is NOT about jobs usually, but I was wondering how it specifically differs, I have 2 bestest OT friends.
Third, That is SOME paper you are gonna write! Seems like it is going to need at least 3 volumes! I guess you have to give all the background stuff for folks coz they dont know already? Seems like a LOT to tackle in one paper. I am sure you can do it though, you will have NO problem getting data from people. But you may have a problem finding other researchers who have worked in the health care industry and who have done anything in writing about Lyme.
Seems like MS would be our best pairing up buddy for looking at other diseases and how protocols were written for them.
Dr Burascano does have stuff about rehab, but it is for PHYSICAL therapy. You can find what he has to say by going to Treepatrol's Newbie Links at the top of the Medical questions board.
I agree with Shaz--those two reasons make it very hard to be very specific with protocols. We are so very different.
For instance: My best time of day is NOT the morning as others have said, but the middle of the day. I need all morning to feel my body.
I am/was a teacher too. I taught art to elementary students for almost 15 years. I found that I could do less and less until now I am trying to get disability and on a one year leave of absence.
My partner is a computer scientist and professor. I can't even begin to THINK about keeping up with what her brain can wrap around!
I am very excited that you are doing this paper!
LEt me know if I can help further, Trails Posts: 1950 | From New Mexico | Registered: Sep 2001
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Thanks for the post. Rehabilitation Counseling is a lot of things, actually. In the public sector, rehab counselors work for the Division of Vocational Rehabilitation within each states DSS Dept. They are refered to as Vocational Counselors. They work with people with disabilities to return to work or to independent living. Services can range from providing assistive technology to counseling on how to cope with their disability, to how to deal with stigmas associated with disabilities, to purchasing work clothes, to administering vocational skills and transferable skills and interest inventory batteries, to providing a person with a Labor Market Study.
We are therapists with a specialty in understanding labor market trends, job analysis and figuring out how to get PWDs employed. Basically, their job is to assist a PWD with any aspect of life that will create more independence.
In the private sector, rehab counselors can work for workers comp companies to assist injured workers back to employment, or be forensic experts called for court cases. For example, if someone's twelve year old son was killed in an auto accident because the tires were faulty, the parents can sue for damages. How do you place a value on that boys life? A forensic expert can.
There is a formula that includes parents' education, their income, the child's grades, etc. which will project that child's potential earnings over the course of his lifetime and, poof...you have his monetary worth. It can also be done for disabling injuries on the job, etc.
-------------------- Tania Posts: 13 | From Charlotte NC | Registered: Jan 2006
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trails
Frequent Contributor (1K+ posts)
Member # 1620
posted
Tania,
Thanks for that concise reply! Looks like a rehap councelor is a big job covering lots of aspects of returning to one's employment.
I have more questions and concerns that might be a part of your paper, research or just something for you to ponder and delve into at a later time...you already got a lot on your plate!
1) It looks like Rehab councelors work primarily with those people who have well defined disabilities, and perhaps not with people who have chronic illnesses. And especially not with those who have "invisible chronic illnesses" ie Lyme, CFS, Migrain headaches, MS. Would you say this is true?
2) Many of us here have been denied disability due to the "invisible" nature of this disease. How could one in your field reach out to the MAJORITY of sufferers who do NOT qualify for disability? Is this even a possibility? If not, what resources do people with these diseases have to help them regain control over their lives?
3) Which one of those specialties that you described are YOU most interested in performing when you finish your Masters?
These were some things that popped in my head. Hope they dont detract, but add to the research, Trails Posts: 1950 | From New Mexico | Registered: Sep 2001
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posted
for phenomenological observations of lymies, and other aspects of lyme, and other tbds, see the the writings(e.g.,essays, case descritions) of the following experts; there are others, which i don't know of,but this is good for an in-depth look:
My daughter Andrea is now homeschooled for High School, which was our only option because of her inablility to concentrate or even ATTEND school regularly. We often discuss how Lyme will affect her in the working world. She is now 17 and still struggles daily with this horrible disease which nobody seems to understand here in MD. Andi has begun making beautiful beaded jewelry--something that she hopes will be a source of income to her. It would allow her to make her own hours and work around the overwhelimg fatigue and fog she experiences.
I could go on for pages about the need for support and services for Lymies in the workplace--an inspired idea, Researcher! Blessings to you!
Denise
Posts: 14 | From MD, USA | Registered: Feb 2005
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I'm still able to work as we have our own business (bait and tackle shop), but my hours are much shorter than they used to be. I can work maybe 5-6 hours five days a week rather than the 8-10 that I used to put in. Mornings are my worst, I usually nap for several hours after I get the kids up and going for school. Afternoons I'm much better except for a period around 3-4pm where I get dozy.
I'm definitely improving but there is still a possibility that I will need a cane in order to walk in the near future if this does not get under control. I can see a definite need for rehabilition for many of the folks with lyme due to the muscle and nerve damage that we suffer from.
ConnieMc
Frequent Contributor (1K+ posts)
Member # 191
posted
Researcher -
I have an MS in Rehabilitation, and am a CRC, CVE, and CCM. I lost a long career in private rehab working for evil insurance companies doing voc assessments and medical management on workers' comp and LTD cases.
I rehabilitated myself in a sense, as I eventually became a self-employed disability advocate. I assist people through the difficult process of applying for SSI and SSDI. About a third of my cases are Lyme. This is a home based job and since everything runs so slowly, I am able to slow down when I am having bad days. I can work when I feel like it.
I am so glad that I am no longer on the "dark side". After going through the public and private rehab systems, I realized the error of my ways. Now I am "helping" people which is why I went into this field to begin with.
Feel free to contact me by private message and I will be glad to help you any way I can.
I'm going to school online through Texas Tech University at Lubbock School of Allied Health. It's a great program and a lot tougher than I had assumed online courses would be.
Listen, since you are working on the SSI/SSDI side of things, you would be a wealth of knowledge for my section on health insurance and disability. Do you mind me doing an over the phone interview with you in the next couple of weeks?
Let me know if you're comfortable with that. If not, I understand.
Thanks, Tania
-------------------- Tania Posts: 13 | From Charlotte NC | Registered: Jan 2006
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ConnieMc
Frequent Contributor (1K+ posts)
Member # 191
posted
quote:Originally posted by researcher: Connie,
Wow, you've had some experiences, I bet!
I'm going to school online through Texas Tech University at Lubbock School of Allied Health. It's a great program and a lot tougher than I had assumed online courses would be.
Listen, since you are working on the SSI/SSDI side of things, you would be a wealth of knowledge for my section on health insurance and disability. Do you mind me doing an over the phone interview with you in the next couple of weeks?
Let me know if you're comfortable with that. If not, I understand.
Thanks, Tania
I sent you a private message.
Posts: 2276 | From NC | Registered: Oct 2000
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Andie333
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Member # 7370
posted
I'm also self-employed but had to curb about a third of my work, because I just couldn't manage it (coaching middle school kids through writing and illustrating children's books).
One of the most valuable things for me has been people's understanding of Lyme. I have found there's a complete disregard of the disease, based on sheer ignorance.
Once my employers learned about the devestation of Lyme, they've been really understanding. I think it would be useful to do brochure that lists some of the common symptoms of Lyme for employers and employees to access.
Good luck with your project!
Andie
Posts: 2549 | From never never land | Registered: May 2005
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posted
Hey folks. I'm sorry I haven't replied to everyone. I am checking this dialogue several times a day for your contributions. You folks have given some great ideas and direction. I'm busy with work and, you know, that Master's thing has been pretty time consuming. I've been on the computer at work and home for school since 8:30 this morning. I am not neglecting you people, I'll try to get some of you answered Friday and Saturday.
Again, thanks to all of you who have given your ideas and experiences...keep them coming.
Tania
-------------------- Tania Posts: 13 | From Charlotte NC | Registered: Jan 2006
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