Hello all. I'm the longtime lurker who just came out of the closet yesterday after reading the Board for months. My neuro still thinks I have possible MS. I will probably have to go a long ways to find an LLMD; none anywhere 'round these parts.
Here's my question. It sounds like the treatment and the Herxing makes most of you sick enough that working is out of the question, at least temporarily.
I don't know how I could manage to do that as the sole support of my teenager.
I think that's why I'm hesitant; "scared to put my foot in the water."
Can anyone tell me about having Lyme, especially neurological Lyme, and working through treatment?
Even if it's something I don't want to hear??? :-)
Thanks.
Michelle M.
Posted by Linda LD (Member # 6663) on :
Michelle,
My doctor has my family on the pulse method for a variety of reasons.
* We have to work
* We are afraid of the insurance company
* My husband and I are both sick and we have two small, sick kids to raise
So we only take an antibiotic pill once a month. It doesn't sound like much but it totally disrupts our whole lives. Someone is sick all the time and then the other people don't feel good either. Ignore that--this has been a bad week--I just feel needy and am trying to schedule in a mental breakdown! LOL
But husband and I are both working. And while I always dreamed of playing "horse" basketball with my kids in the driveway--now we make due with board games.
I would just advise you to get started right away--the quicker you start the better your chances of getting rid of the LD for good.
Best wishes, Linda
Posted by lou (Member # 81) on :
Some docs start out low dose to knock down the germ load, so herxing is not as fierce.
But, not everyone has the same reactions to meds. I have only had a few obvious herx reactions, not long lasting.
Don't think that working and getting treated are incompatible for a lot of people. Then, too, if you get too sick with lyme, you may not be able to work either. Before I started treatment, had a spell of lyme "fog" when I couldn't understand anything I read. This could be a problem in many jobs!
Your reaction to meds cannot be predicted. Only way to know is to try it. Might want to time it so you could take a couple of days off if necessary. And not have anything really major scheduled work-wise. But these precautions might not be necessary.
Posted by Aniek (Member # 5374) on :
Michelle,
I received the call from my Dr. about my positive Lyme test 2 hours after sending in my application for law school.
I work full time. I began Lyme treatment in March 2004. In September 2004, I began a part-time law program at night, in addition to maintaining my full time job.
Lyme hits us all differently and we all react differently to treatment. The first few months of treatment my pain increased, and I was less productive. But now I miss much less work than I used to, and I'm actually accumulating sick leave again.
I am not back to 100%, but I am much better than I was pre-treatment.
I was honest with my employer when I started treatment, and let them know that I may miss work. Every time I changed abx I informed them so they knew there was a possibility it would impact my work. My boss happens to have an auto-immune disorder, so she is very understanding. But I have other managers I work for, and they know as well.
Posted by riversinger (Member # 4851) on :
Hi Michelle!
There are doctors in Northern California. If you want some names, drop me an e-mail.
As far as whether you would be able to work, that is very individual. Most doctors can work with you to design a program that is tolerable, but still effective.
Remember, when you read on here you are likely to be hearing the most difficult stories. Lots of people work during their treatment. My son has been doing so for two years, with just occasional sick days. No more than anybody else where he works.
What is more scarey is to wait until you are so sick that you have no choice about it.
Hi. I am being treated for neuro-Lyme and I didn't herx at all on antibiotics. In the beginning (2/05) I had a PICC in my bicep for 3 months and came to work everyday. I am a secretary. I didn't even herx on Samento.
We went through the MS drama, too, so I know what you are going through. I even had the brain lesions on my MRI.
Carol
Posted by Michelle M (Member # 7200) on :
Thanks, everyone, for the encouraging words. If I've got Lyme, I've had it a long time and might need a long treatment. But in reality, Lyme or not, I need to be able to work to support myself and my daughter.
Fear of losing my employment but also my health insurance are factors. Fortunately I have a very cool and understanding boss who would give me time off as needed.
Another thing is that even though I'm pretty sure I don't have MS, I feel I need to be really certain, since clearly there ARE people walking around who DO have MS, and I don't want to just assume I don't have it until I'm diagnostically sure I don't. Then I'll feel better that it's really Lyme, even though in my heart I sorta know it's Lyme.
Riversinger, I will definitely email you offlist for some names. Thanks much!
Michelle M.
Posted by Stumble Bee (Member # 7274) on :
Michelle, I had the same fears about herx when I started my LD treatment in January of this year. I need to work in order to fund my treatment. So far, I have just had to take a sick day here or there due to severe exhaustion. Its GREAT that you have an understanding boss. I work for a lawyer, but he is struggling with a lot of health problems right now himself, so he is understanding when I need to take a day just to rest. Some days at work I have a lot of energy and am able to get a lot done. Other days, I really drag and have to be slow and deliberate about my tasks. Once in a while I take a quickie nap in the conference room. I don't know how strong your support system is, but if you are working full time, you'll probably want to sleep a lot at night and on the weekends. If you have people to ask for help, do it! This is really hard for me because I struggle with feeling somewhat ``useless'' because of my exhaustion, but you'll find that you need the help. Give friends and family and pertinent co-workers the links to sites like ILADS and even to this forum, so that they can get insight into what you are going through and the help you'll need.
Take care and God bless!!!
p.s. The theory is that my lyme disease was passed to me ``in utero'', so mine has been slow and progressive as well. I'm 23 years old and was just diagnosed. Glad I found out now, rather than 20 years down the line when more damage has been done. My mom and I are going through treatment together and I just recently moved back in with her, so between the two of us, the house is a disaster area! You just have to accept that certain things are going to fall by the wayside. And I need to take my own advice ;-P.
Posted by lla2 (Member # 2364) on :
I"m a single mom , and all three of us have lyme...I work full time as a school nurse and just finished up two courses to finish my masters....
it's a slow road...but it can be done. you do what you have to do to survive..i had to go out and work..who else would put food on the table for us? I catch up on sleep on weekends, and go to bed at 10 pm each night..forget a social life....this is my life right now...period...
I"m getting better every day. that's my mantra...i just keep saying it...
best
Lisa
[This message has been edited by lla2 (edited 07 May 2005).]
Posted by fatigued15 (Member # 6437) on :
Michelle,
I wouldn't waste anytime to see if Lyme is your problem. You don't want to wait and get so sick from the lyme that you won't be able to work. My daughter can not even be in school full time and is very sick. But she was like this before ABX treatment. You can only push so far. If you do have Lyme and your symptoms get worse you won't be working d/t to the lyme.
Don't put it off. Lyme is nothing to mess around with.
Good luck!
Posted by Michelle M (Member # 7200) on :
Thanks again, everyone. Thanks to your pointers from this site, I got an appt. to see Dr. J in Chico; they had me fill out a bazillion-page application. He only sees two new patients a month so I feel very lucky. It may have helped that my brain looks like swiss cheese and so does my retina. (I sent down my MRI report/optic exam photo.)
My neuro is doing a spinal tap on Thursday and this Chico LLMD whom I haven't even officially MET yet is already calling to make sure they draw the right cerebrospinal fluid sample for Igenex (this will really make my neuro roll his eyes but he'll do it).
The LLMD knows I really have to work so hopefully he'll tailor my ABX in a way which will allow me to continue walking upright, more or less.
I work as a paralegal for a criminal defense trial attorney. Every day is insanely busy and everything is an emergency.
When my boss is driving me absolutely crazy and is too grouchy and demanding to be reckoned with, I've taken to fixing him with a withering look and announcing, "You're starting to really BOTHER MY BRAIN LESIONS!!!" (Making fun of myself helps me try not to take myself too seriously.)
I'm not worried about getting fired (impossible) so much as getting too slow-minded to do my job (much more likely)!
I'm getting started in the next couple weeks and gonna hope that work and Lyme treatment can coexist. Thanks, everyone, for replying.
Michelle
Posted by riversinger (Member # 4851) on :
Michelle,
I missed your reply, until just now. I am so happy to see that you got an appt.!!!!Let us know how things go, how you do with treatment, and if you need any more thoughts or contacts.
From one paralegal ( for criminal defense, and civil attorneys) to another...
it's going to be rough. REAL rough. Then again, maybe not.
It all depends on you, your strains, your coinfections, your detox pathways and SO much more.
I put paralegalism on the back burner and hopped over to legal secretary. not something I'm proud of.
Posted by treepatrol (Member # 4117) on :
Work now and get away with it not treating eventialy if you dont treat the lyme it will treat you in other words you wont work later and possibly worse.
You can work while being treated but you probaly will miss some days because of the herx's but if you waite to get treated it can cripple and kill.
Posted by Michelle M (Member # 7200) on :
Tree and Crime, I'm DEFINITELY getting treated starting next week. Yesterday I dozed through part of a staff meeting and everyone gave me a wide berth because my head was splitting (as it is today). And I'm not even treating yet! But I am looking forward to eradicating whatever has taken up residence in what used to be my brain, no matter what it takes!
Michelle
Posted by treepatrol (Member # 4117) on :
quote:Originally posted by Michelle M: Tree and Crime, I'm DEFINITELY getting treated starting next week. Yesterday I dozed through part of a staff meeting and everyone gave me a wide berth because my head was splitting (as it is today). And I'm not even treating yet! But I am looking forward to eradicating whatever has taken up residence in what used to be my brain, no matter what it takes!
Michelle
Heres more things to read Michelle
Newbies List 2005
WELCOME To LYMENET
Here's more goodys! A typical response to newcomers.
Hi and WELCOME! Get a LLMD or at least Dr that is willing to learn about lyme. "Lyme literacy" means, first and foremost, knowing how to diagnose the disease accurately. Borrelia Burgdorferi is a clinical diagnosis, based on symptoms and on your response to treatment. Good Luck, bumpy road ahead. Lyme Disease symptoms 2005 Lyme Symptoms 2005 Post for a LLMD in Seeking a Doctor. Ps remember I am not a Dr, just a fellow sufferer. Support Links LLMD's
