I work mostly at a desk on a computer. I have been working before getting diagnosed, but found myself taking more days off than usual. Partially for doctor appointments and tests, partially because I am too tired to get out of bed. I was wondering if I will have to go out on disability while being treated or continue to work and take off days here and there. I have not gotten confirmation yet, but believe I will need IV antibiotics, since I have neurological involvement.
Thanks!
Posted by sixgoofykids (Member # 11141) on :
I was not able to work prior to diagnosis. I did get worse when treatment started.
If you are working now, it's hard to say. Each person is different.
Posted by Florence1 (Member # 22960) on :
i guess it depends...on your job and how you feel......i kept working until i couldnt work any longer last september....i was diagnosed lyme end of october......I havent returned to work since...have been on short term disibility now long term through my employer.........but have just been told if i dont return in 2 weeks i will lose my job.......good luck with your decisions......
Posted by TF (Member # 14183) on :
Don't worry. We all have neurological involvement. From page 12 of the Burrascano lyme treatment guidelines:
"After a tick bite, Bb undergoes rapid hematogenous dissemination, and for example, can be found within the central nervous system as soon as twelve hours after entering the bloodstream."
But, I and all my friends got rid of lyme and coinfections on oral antibiotics only. Most people don't need IV.
I had a desk job. I continued working throughout treatment. Like you, I took more days off than usual, and also took off partial days.
One of my friends needed 90 days off and the lyme doc did the paperwork for her (Family Medical Leave Act) to get it. She only needed the time off because her memory was so bad she was making mistakes that were costing her employer (a bank) money. Bank said they would fire her with next mistake.
After 90 days, she was so much better she was able to return to work.
So, you likely will just take oral meds and will take off as much time as you currently do.
Even with IV, people can continue to work.
It has now been over 5 years since I completed my lyme treatment and I am still symptom-free, enjoying my life. I had lyme, babesiosis, and bartonella. I had lyme undiagnosed for at least 10 years.
Wish you the best!
Posted by Keebler (Member # 12673) on :
- You may or may not be able to and need to consider a couple contingency plans.
About being "too tired" to get out of bed. What you really mean is "too sick" to get out of bed. Being "tired" can not come even close to the sick "tired" of lyme. So, be sure to phrase your statements with adequate respect. If you tell your boss you are "too tired" - well, everyone is.
The crushing fatigue that comes with lyme is illness, not just being tired. There really is no word that adequately describes that bone-crushing adrenal exhaustion. But, bottom line, it's often more of a sick feeling more than a tired feeling.
You might consult an attorney who works with matter of ADA (Americans with Disabilities Act).
Then talk to your HR person and declare a disability so you can get some accommodation to help both you and your company.
You need not mention the diagnosis but come up with something to fill the void if asked. "Undetermined" "they are looking at several avenues" a unique kind of fibromyaglia" ? -
Posted by Keebler (Member # 12673) on :
- Accommodation can include a different chair, lighting adjustment, a place to take a nap (unpaid time), a quieter location, working from home, changing some jog duties, sharing some, etc.
Many lyme patients have inner and middle ear involvement. That's called the vestibular system. The list below shows just how hard that can be for anyone to function. It can explain a lot and, therefore, help you figure out what things that can help.
For anyone who does not understand the crushing fatigue from lyme, if you also have vestibular problems, that can be the explanation.
In the section: "Vision" (free publication) -- clink onto that link for this:
Vision Challenges with Vestibular Disorders
Seven-page publication from VEDA -
Posted by LA (Member # 26353) on :
Thanks for your replies. I don't call the boss and say I am too tired to get out of bed to come to work. For the longest time, I have been trying to hide the symptoms and keep people from knowing I am sick. I did tell my job I do have Lyme, mostly because I was called at work with the diagnosis and was completely shocked and blurted out "What, I have have Lyme Disease?"
I can take FMLA if need be and do have temporary disability insurance I can use. Financially, we could manage. One side of me wants to keep working to maintain some normalcy and don't want to dump my responsibilities on my coworkers. Another side of me says take the summer off, relax, spend time with my son, and get better. I have the benefits and am definitely not 100% when I am there.
Posted by Keebler (Member # 12673) on :
- LA,
Glad to hear you have some leave time. As for what to tell the boss, I never KNEW what was wrong for so long. I used "Food poisoning" way too much because that's the only thing I could equate it to. I do recall having told someone I was just SO tired and they surely did not get it. I was then seen as a wimp. So, that's just why I cautioned about that - even with friends and family.
I do hope you can make decision that works for you. Might there be a middle ground or can you share some duties for a while? Realistically, even with the best plans, your body may have to just say "no" - so some planning has to happen around that possibility, anyway.
Good luck. -
Posted by LightAtTheEnd (Member # 24065) on :
I would LOVE to have the choice to take some time off to recover, but it's not an option for me, so I keep working the best I can. I have fatigue and pain, but not severe neuro symptoms, so I have been able to manage, more or less.
"About being "too tired" to get out of bed. What you really mean is "too sick" to get out of bed."
This word choice is a problem for me too. Whenever I have told someone I can't attend an activity or do an errand for myself because I am "too tired," they tell me how they were tired too after working all day, or they yawned a lot after getting up too early, or some such thing.
I can't seem to get across the fatigue feeling. It's not like you had some energy and just used it up and need to recharge your batteries. It feels like the energy was never there at all, in your cells.
"Tired" covers the urge to lie down and sleep and the physical weakness, but doesn't convey the fact that it's an infection interfering with our energy production cycle, hormones, nervous system or some other form of basic physical functioning. I guess "sick" is a better word for it.
Fatigue is actually my most disabling symptom. Yet other people will hear my pain, emotional volatility, digestive issues, etc. as symptoms of illness, but they hear "tired" as "I'm not really sick." Even when I call it "Lyme fatigue," they don't quite buy it.
Posted by EyeBob (Member # 12572) on :
absolutely I have been able to work through this. Some days were tougher than others. I find ways to take a nap at work which helps a ton.
bt
Posted by bcb1200 (Member # 25745) on :
I started my downhill slide in early Feb. By mid March I was having a hard time coming into work. I "worked from home" a lot (I have that option) and I also had a lot of Dr. appointments.
Since being diagnosed in May and starting treatment 5 weeks ago my fatigue is gone and my brain is much clearer. I'm back, essentially, while still having some symptoms. But overall better.
A HUGE HUGE HUGE knock on wood for me. It is in my brain and I have an abnormal brain spect scan. I am told I have a long road ahead, but I'm feeling much better most days.
Posted by greengirl (Member # 25316) on :
I'm still working, not with intravenous, though. A desk job. There's a thread on General Support about ideas for getting through the work day.
Posted by Beachinit (Member # 21040) on :
I was working 3 days/week for 1.5 years prior to getting sick. When I first realized I had more than fatigue, cold intolerance, and memory difficulty which I had attributed to my age, the long cold dark winter etc. I got very sick and it was very sudden, I missed 1 day of work, I started antibiotics. . .the wrong ones for Lyme though but they helped until I could figure out that a tick bite in CT from 2-3 years ago was causing me to not feel my feet, not be able to walk more than 100 ft or so etc etc. I diagnosed myself and made sure I got long-term doxycycline etc. I did not have health insurance but did have a good paying job and I would drag myself in to work and made sure no-one new I was sick etc. I did unorthodox things like use caffiene (now a Dr B no no.) and nicorette gum for the early part of the work day when my brain would balk at working properly. I am now on my 10th month of antibiotic treatment ( went off doxy too early and had a relapse 3 months later). Brain is working much better, still there is medication sickness, easy fatigue etc. but I am still working same as before. I am glad I had not ramped up to 4 or 5 days/wk and that my services have retained their value. Dr B's latest guideline claims that late disseminated and chronic cases need IV antibiotics and I am sure that they have their place but the latest guide has one paragraph only about combined oral antibiotics.
COMBINATION THERAPY (see page 12) This consists of using two or more dissimilar antibiotics simultaneously for antibiotic synergism, to better compensate for differing killing profiles and sites of action of the individual medications, and to cover the three known forms of Bb. A typical combination is the use of a cell wall agent plus a protein inhibitor (ie: amoxicillin plus clarithromycin). Note that GI intolerance and yeast superinfections are the biggest drawbacks to this type of treatment. However, these complications can often be prevented or easily treated, and the clinically observed benefits of this type of regimen clearly have outweighed these problems in selected patients
This is the escape clause for people like you and me who have a modest but serviceable functional capacity, and would actually prefer and are thankfully physically able to keep right on working.