I am starting today on 500mg azithromycin -- with a 3 month run. Doc (specialist) is giving me some ProFlora thing and also will start taking Artemesia. I was out of work for 6 weeks in and around developing a heart problem that required a pacemaker (the a/v block was worsening and docs were concerned that putting it off any longer was dangerous). Anyhoo ... I went back to work after several weeks and after 3 weeks of doxycyclin. In a few weeks, I hit a wall. Extreme fatigue, maddening muscle spasms, arthritis symptoms, etc ... you know the menu. I stopped working a couple of weeks ago.
Now here's my question: I do not want to go back to work and then suffer a relapse. Don't want to keep putting HR through putting me back on short-term disabiility. I have a very physically active job (newspaper photographer) that 1) requires physical stamina 2) being outdoors in the sun a lot 3) being in public settings a lot (i.e. sporting events, schools, around lots of kids).
I'd like to give my editor some sense of when I'll return to work. Sun sensitivity: does that simply mean I need to be careful about using sunblock? Being in the public/around kids: am I at greater risk for picking up colds, flus, etc. -- either because of the Lyme disease or being on antibiotics? Will I hit points during these three months of being ill because of the antibiotics? I'm trying to read up on herx and stuff but would be most appreciative of what you guys think about when I can realistically return to work? 4 weeks, 8 weeks, 12 ... I do not want to come out of this 3 months and get sick again ...... and wind up being out (yet again). I'm also not tolerating heat well at all right now and sweating profusely ... that will make working a challenge in its own right.
FYI: I likely contracted this in May 05 (extending period shooting in a marsh, was covered in ticks -- high deer populations, etc.) Had a summer flu, terrible headaches - in Oct: 3 weeks heart palpitations; Dec: terrible rib pain; Jan: 3 weeks night sweats; Feb: 3 weeks flu and high fevers March: lower back and hip pain April: heart problem.... and on it goes. Didn't hear the word "Lyme" until late April (thanks to the cardiologist...).
I know it's like asking you to look into a crystal ball but can I realistically give my boss a return date at this point? Both the specialist and my family physician are writing "out until further notice" on disability paperwork...so there's no hassle on that score.
Thanks in advance for your advice and help. Had a co-worker send me a 'how are you?' e-mail that also included: must be nice to have the summer off! Felt like saying, "I'll trade you!"
Ruth
-------------------- Ruth Posts: 9 | From Maine | Registered: Apr 2006
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hiker53
Frequent Contributor (5K+ posts)
Member # 6046
posted
If you are on doxy, definitely use sunblock, wear good sunglasses and a hat that is wide brimmed.
I, too, am in the position of being off work. As a teacher my doctor phrased the letter that I would be off a semester, but maybe the whole year.
I don't think you can predict when you will get better or feel good enough to do your job well. I have always found honesty is the best policy and would sit with your employer and try to explain that to him/her. Perhaps you can give a longer time that you might be out and then if you can return earlier that would be great. I guess it depends on understanding your boss is.
Perhaps as you get better they may let you work part time to see how it works out healthwise. You might bring that up.
Wish I could give better advice. Good luck. Hiker
-------------------- Hiker53
"God is light. In Him there is no darkness." 1John 1:5 Posts: 8974 | From Illinois | Registered: Aug 2004
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Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
Ruth,
I wish I could answer your question, but I can't. As you said, it's asking to look into a crystal ball.
If your boss is understanding, then I think a frank conversation is the best. I keep my boss very detailed with what's going on, so I can minimize any shock if I suddenly need significant time off. But he knows I just can't forsee what will happen.
If you are worried about how your boss will react to that type of conversation, then you may want to look into how to protect yourself first. I'm not sure if you are in a union workplace, but that is a place to start. If not, you may want to get advice from a lawyer who specializes in disability over the ADA.
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
Hiya Ruth!
Let me jump in and say great post! It also sounds like you have a great job.
Just go ahead and send me all your cameras and lenses, and there won't be any trouble.
You've been through a lot already with your pacemaker!
So, it sounds like all you've done so far is Doxy, and now you're starting Zith + artemesinin?
Did I get that right?
You said you had a specialist. Does that mean an LLMD? Member of ILADS and all that?
Have you tested for co-infections? If you were covered in ticks in your cool-sounding photo assignment, I'd be thinking co-infections fer shure!
I think if you feel up to it, you can be out and about all you want. I don't know if lymies get more colds than others. (Though I DO believe we have a harder time gettin rid of 'em!)
As to doxy, man-oh-man, COVER UP. You'll fry before you can see it. It won't be pretty. Pain to the bone, unbelievable, from a doxy burn. Just from driving with the sun on your arm. And I'm not even a little sun-sensitive, either. Don't count on sunscreen to prevent it. Doxy LAUGHS at sunscreen.
Man, a realistic date to return to work, she wants. Hmm... Scratches head.... Well, that depends! I hoped to be "all better" in six months. And here I am, a bit more'n a year later. But things never go according to any pattern and no two lyme patients follow the same course. 'Specially sounding like you've had it a while with cardiac involvement, musculoskeletal, neuro involvement.
You may have to switch meds. You may get stalled. You may be positive for co-infections. You may test negative, but have some anyway, and decide to treat and see if it helps. There is just no telling.
It's not unusual to NOT feel markedly better till six months into treatment. (i.e., that wouldn't make your treatment a failure if you still felt low six months in!)
I'd continue to think optimistically... I always do! Make room for changes if needed. Make sure your doctor is an ILADS doctor (International Society of Lyme and Associated Diseases).
And keep us posted!
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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I'm sorry to hear about all you have gone through with Lyme. I hope that you get some relief in symptoms soon.
It seems like you found a real gem in your cardiologist, in that he recognized Lyme. Do you have a Lyme Literate Medical Doctor?
Please see the link for newbies about this (if you have not already).
There are several issues that you raise. First off, I would say that you should focus on rest and recovery and try not to think about a target date for returning to work. Dr. B's Guidelines say it is important to rest in order to recover.
Meanwhile, I would recommend trying to shore yourself up financially (and plan for the worst case long term scenario) by filing for any disability insurance that you are eligible for.
Based on past experience working in the field of medical disability, I would suggest that you consult one or more lawyers who specialize in disability law, and make your case now for any insurance that you may be due.
If, on the other hand, you find you can return to work in a few months, that's great, you can wrap up any disability case.
However, if you wait to file, and if you go in and out of work, your employer may try to frame you as just being unreliable, rather than acknowledging your illness.
Since you caught Lyme on the job, why not file for Worker's Compensation?
Get copies of all your recent medical records (doctor's notes, lab tests, everything) and keep them in a home medical file. These may be invaluable later.
Don't talk to your Human resource Department on the phone. Communicate only by letter. This way you can spell out the facts of your case in the way you want them recorded in your file. If you use the telephone, they may write notes in your file that are inaccurate and work against you later.
Anyway, these are just my thoughts. I don't mean to discourage you. I think you are on the right course getting on antibiotics, seeing a cardiologist, and consulting Lymenet.
Good luck and keep us posted.
kidsatlast
Posts: 156 | From MA | Registered: Jul 2003
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MagicAcorn
Frequent Contributor (1K+ posts)
Member # 8786
posted
Posted by kidsatlast:
Don't talk to your Human resource Department on the phone. Communicate only by letter. This way you can spell out the facts of your case in the way you want them recorded in your file. If you use the telephone, they may write notes in your file that are inaccurate and work against you later.
Very good advice for everyone. Thanks.
Acorn
-------------------- Posts: 1279 | From In hiding | Registered: Feb 2006
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ConnieMc
Frequent Contributor (1K+ posts)
Member # 191
posted
Why aren't you filing for Workers' Compensation? Sounds like you contracted Lyme while on the job.
The progression of this illness is next to impossible to predict. Different people have different courses, symptoms, require different treatment, etc. That's one reason Lyme is so controversial.
Good luck!
Posts: 2276 | From NC | Registered: Oct 2000
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bettyg
Unregistered
posted
Originally posted by rar1234: HI all,
I am starting today on 500mg azithromycin -- with a 3 month run. Doc (specialist) is giving me some ProFlora thing and also will start taking Artemesia.
I was out of work for 6 weeks in and around developing a heart problem that required a pacemaker (the a/v block was worsening and docs were concerned that putting it off any longer was dangerous).
Anyhoo ... I went back to work after several weeks and after 3 weeks of doxycyclin.
In a few weeks, I hit a wall. Extreme fatigue, maddening muscle spasms, arthritis symptoms, etc ... you know the menu. I stopped working a couple of weeks ago.
Now here's my question: I do not want to go back to work and then suffer a relapse.
Don't want to keep putting HR through putting me back on short-term disabiility .
I have a very physically active job (newspaper photographer) that
1) requires physical stamina 2) being outdoors in the sun a lot 3) being in public settings a lot (i.e. sporting events, schools, around lots of kids).
I'd like to give my editor some sense of when I'll return to work.
Sun sensitivity: does that simply mean I need to be careful about using sunblock
Being in the public/around kids: am I at greater risk for picking up colds, flus, etc. -- either because of the Lyme disease or being on antibiotics?
Will I hit points during these three months of being ill because of the antibiotics? I'm trying to read up on herx and stuff
but would be most appreciative of what you guys think about when I can realistically return to work? 4 weeks, 8 weeks, 12 ... I do not want to come out of this 3 months and get sick again ...... and wind up being out (yet again).
I'm also not tolerating heat well at all right now and sweating profusely ... that will make working a challenge in its own right.
FYI: I likely contracted this in May 05 (extending period shooting in a marsh, was covered in ticks -- high deer populations, etc.) Had a summer flu, terrible headaches -
in Oct: 3 weeks heart palpitations; Dec: terrible rib pain; Jan: 3 weeks night sweats; Feb: 3 weeks flu and high fevers March: lower back and hip pain April: heart problem.... and on it goes.
Didn't hear the word "Lyme" until late April (thanks to the cardiologist...).
I know it's like asking you to look into a crystal ball but can I realistically give my boss a return date at this point ?
Both the specialist and my family physician are writing "out until further notice" on disability paperwork...so there's no hassle on that score.
Thanks in advance for your advice and help. Had a co-worker send me a 'how are you?' e-mail that also included: must be nice to have the summer off! Felt like saying, "I'll trade you!" Ruth
Wow, Ruth; you have been thru the mill! NO, no one has any idea how they will be affected nor when they can return to work.
Others have answered you. I just wanted to break up your long text paragraphs for us neuro lymies who can't comprehend or read them that way.
Please hit enter often and leave one blank line between paragraphs like you did her ok...thanks. Bettyg
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posted
Want to offer sincere thanks to everyone who answered my question. We lost power last night so this is my first chance to respond. I went to the dentist this a.m. and the hygenist cut her finger inside my mouth (on some metal thingy) and they promptly sent me to get blood drawn so I could be tested for HIV and hepatitis. Fun morning. Poor girl, she's so nice - anything I can do to put her mind at ease, I'm more than happy to do.
What sage, great advice! From being careful in the sun (thanks hiker53)to protecting myself legally, it all makes sense.
Kidsatlast: I'm so thankful for your advice. I have been just communicating with HR via phone and you're absolutely, right: I should be protecting myself by putting things in writing. And, as you suggest, I contacted an attorney today to get a consult, to get my ducks in a row, so to speak - in case this thing drags out. I will also start collecting all medical files (osteopath, family physician, specialst, cardiologist....).
MagicAcorn: Thank you -- yes, you're making a lot of sense. PUT IT IN WRITING!
ConnieMC: Boy, I've sure thought that this should be worker's comp. Did some digging this afternoon and discovered e-mails from myself to a couple of friends about being on assignment and finding myself covered with ticks at a marsh. Also can track summer flus, headaches, etc. I've got $3k in medical bills -- plus the cost of the Lyme Disease specialist --- and am about to go on 3/4's salary for the duration of short-term disability. Doesn't seem fair but how the heck do you prove where you got a tick bite?
Aniek: Yes, it's clear I need to protect myself --- even if I don't need to go on disabiility, it's better to talk to someone now Thank you.
Michelle: Great picture of you with the fish! My best friend's name is Michele and she loves to fish! Thanks for your advice - and yes, my specialist is LLMD and I'm confident I'm getting good care. I'm also grateful that my family physician doesn't question that I have it (though the Lyme titers came back negative...). You sound like a great, supportive friend - I hope you're back on your feet and feeling better soon. As far as the gear ---2 pro cameras, 6 pro lenses ... you'd have a ball! Poor stuff it gathering dust right now....
Well, it's obvious I came to the right place -- you all armed me with some great advice. I feel so out of it these days - and feel like I've just benefitted from you putting on your thinking caps for me.
And finally I hope you're all doing well, staying cool and feeling like a million dollars soon.
Warm Regards,
Ruth
-------------------- Ruth Posts: 9 | From Maine | Registered: Apr 2006
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posted
Yes, Ruth...this is a great bunch of people here...ready to help in any way!
I was just going to say that if you go back to your job, you're braver than I am. I couldn't do it.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96227 | From Texas | Registered: Feb 2001
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Sue vG
Frequent Contributor (1K+ posts)
Member # 3143
posted
Ruth,
People's experience with lyme is very individual. I've had it for 5 years and have not stopped working, though I spent an inordinate amount of time during the first 6 months in duck's offices. (What does a duck say?)
Your return to health may be gradual or steplike, and identifying some magic threshold for returning to work could prove difficult.
Looking back, I was certainly sick enough not to work for several months, but I can't pinpoint a time when it would have been obvious for me to go back to work if I'd taken off. Therefore, I would have had to just arbitrarily pick a date to go back to work...probably based on HR considerations.
That approach may not work for you. Maybe you could test yourself each day to see how you feel picking up your equipment and walking around with it for a while.
I find that getting my hair up off my neck and not wearing any jewelry or cords around my neck helps immensely with staying cool when I have to be outdoors.
You can make your antibiotic treatment a little less hard on yourself if you use probiotics to control yeast overgrowth, and milk thistle to protect your liver.
ConnieMc
Frequent Contributor (1K+ posts)
Member # 191
posted
quote:Originally posted by rar1234:
ConnieMC: Boy, I've sure thought that this should be worker's comp. Did some digging this afternoon and discovered e-mails from myself to a couple of friends about being on assignment and finding myself covered with ticks at a marsh. Also can track summer flus, headaches, etc. I've got $3k in medical bills -- plus the cost of the Lyme Disease specialist --- and am about to go on 3/4's salary for the duration of short-term disability. Doesn't seem fair but how the heck do you prove where you got a tick bite?
Ruth
Ruth, you can file your own workers' comp claim. Your state should have an office that handles nothing but WC. Here in NC it is called the NC Industrial Commission. This is a must since you are dealing with so many unknowns. The worst case senario is that you could never be well enough to consistently perform your job duties again. Hopefully that will not happen but you must protect yourself at all costs. You may have a fight on your hands but get a good attorney to help if they are resistant.
I used to be one of those "hired guns" and worked for WC insurance carriers helping them throw people off benefits.
Don't delay. Contact the "Industrial Commission" in your state and talk with them to explain your senario. There may be time limits, etc. for filing claims. Typically they are very nice. It could mean getting all those medical bills paid and having your future income protected.
Also, whatever you do, leave a paper trial. Send things certified, document every call and happening on your WC claim, if a supervisor starts harassing you about filing a claim against them, then document it. Sometimes things can get antagonistic when in a situation such as this. But bottom line take care of yourself.
If you have any questions about WC in general, feel free to PM me. I worked WC claims for 14 years before Lyme disabled me. Rough business and I realized the error of my ways when I became disabled myself.
Good luck.
Posts: 2276 | From NC | Registered: Oct 2000
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People's experience with lyme is very individual. I've had it for 5 years and have not stopped working, though I spent an inordinate amount of time during the first 6 months in duck's offices.
If you're talking about my comment:
I wasn't referring to her returning to WORK, but returning to her JOB. I couldn't run through fields and do other high risk activities after going through the H*** of lyme treatment.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96227 | From Texas | Registered: Feb 2001
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Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
Ruth,
You don't just want to protect yourself in case of needing disability. Also in case your employer does not want to provide any more leave or other accommodations, you want to know your rights under the Americans with Disabilities Act.
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
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bettyg
Unregistered
posted
I was 21 when a tick bite me, which I didn't see NOR did I have a bulls-eye rash.
I left fulltime work at age 49 due to my health illnesses; so I worked fultime 28 years with my MISDIAGNOSED chronic lyme! Bettyg
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Sue vG
Frequent Contributor (1K+ posts)
Member # 3143
posted
Lymetoo, I was responding directly to Ruth's original post. Posts: 1307 | From TX | Registered: Sep 2002
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liz28
Unregistered
posted
Since you asked for two-cent personal opinions here, and I'm in a similar profession, here's one take:
Do not give your boss a specific return date, since Lyme wears on reputations as much as physical health. You want to do everything you can to protect your job. You want to be cautious to make promises you can keep.
The best sunblocks include mexoryl, titanium dioxide, and avobenzone (Parsol), which all give UVA/UVB protection.
In terms of protecting your immune system, be sure to really watch out for yeast while you are on antibiotics. It sounds like this minor side issue, but it can do tremendous damage to your immune system. Get a prescription like nystatin or diflucan, and buy the super-expensive probiotics, because they really are much better than the cheap ones.
Next, go to www.vitacost.com and order a bottle of Nutricology artemisinin. Even if it turns out that you do not have babesia, it is a possibility if you are having sweats and mysterious relapses. Don't wait for a positive test result, you want to take something right away to protect your job. Artemisinin temporarily lowers the level of babesia in your bloodstream, which will give you more energy, calm your anxiety a little, and also help control the relapsing fevers associated with babesia. It's not perfect, but at least you should be able to continue your job. If there is no effect from taking artemisinin, then maybe you can write off the babesia idea, but at least you will be freed from sitting by the phone waiting for test results.
You must take a supplement called CoQ10, both to support your heart and raise your energy levels. I'm a big fan of Jarrow's Q-Absorb, but there's plenty of good brands out there. Also, throw in some liver support like milk thistle, NAC, and schizandra. Take at least two, because liver stress usually shows up first as fatigue.
Because of your heart condition, you said that you must be cautious about various prescriptions. I've benefited from two prescriptions, provigil for fatigue and celebrex for inflammation, but both have potential side effects. Same goes for the antibiotics: the best ones have the highest potential for damage.
At the same time, they do tend to work better. In general, Lyme patients must take a cephalosporin (rocephin, omnicef, ceftin) as the basis for any protocol. The Dr. B protocol is to treat Lyme with a cephalosporin, a macrolide, and a cyst buster, and to treat any co-infections that may be present.
As a journalist, you probably think wading through superfluous data is a fun way to spend your weekend. So now is your big chance. Go back through the Lymenet archives for at least one year (no kidding) and start reading. After the initial deluge, you are going to notice something: the same topics come up over and over, and if you follow people long enough, you will see them figure out what works and abruptly stop coming to the board.
If you come here and ask questions as you go, you will mostly get answers from people who are still sick and from newcomers. Don't worry, you won't have to read every single post from 1995 to get the answers you want. In fact, you'll be shocked at how quickly the answers leap out at you. Again, follow people's stories instead of just reading one or two of their posts, and take note of the day they leave.
Also, memorize Dr. B's protocol. Although few people use the exact drugs he does, his overall model is the best thing we've got going right now.
Oh, and DO NOT get evangelical and start discussing all these details with your co-workers. Lyme is a lot like the flu, the most fascinating topic on earth to people who have it, and the most boring topic since dirt for the healthy. If you had an arrow sticking through your head but could still do the job and talk football, you'd probably be fine. What you want to watch out for is the inevitable process of letting a chronic health problem become your identity, which is not what you were hired for.
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Andie333
Frequent Contributor (1K+ posts)
Member # 7370
posted
I'm in the same field and know how much stamina the work can require...and how quickly you've got to think on your feet.
Since getting sick, I've gone freelance, which has taken a huge hit on my income but also given me some professional flexibility.
If you've got an editor who understands the unpredictable nature of this, that's great! As others have advised, I'd be honest and see what happens.
In the beginning of treatment, I was completely honest with both clients and editors, and that seemed to work the best for me. People were genuinely understanding and at times unbelievably patient and caring.
Recently, I took on a big new freelance project (I'm more than a year into treatment). This time, I was able to walk into the office without limping and didn't say anything about my health. I now feel at a place where my Lyme is much more manageable and much less volatile.
Keep us posted!
Andie
Posts: 2549 | From never never land | Registered: May 2005
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posted
I didn't see where anyone mentioned the FMLA Family Medical leave Act. It allows you to be out of work up to I believe 12 weeks for a medical illness for yourself or a family member. Its without pay however but you do get to keep your job. Your employer can not fire you for being out. You will have to call the insurance company every time you are out and report your time off under the FMLA. It has worked for me so far. I'm sure I would have been fired by now if this law did not exist.
Posts: 547 | From Maryland | Registered: Mar 2005
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