Working with Lyme..

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

Ashleyann82587
Regular Member


Date Joined Sep 2017
Total Posts : 184
   Posted 10/1/2017 5:59 PM (GMT -7)   
Just wondering who out there is working despite having this life sucking illness?
For 7 years I've worked as an ophthalmic technician in a insanely busy retinal practice. Due to my Lyme kicking my a** very suddenly(1 month ago I felt great!) i can't believe how quickly my health declined. I missed 1 week of work, and could only do 3 days last week. I dread the work week. I'm debating asking for shorter work days until I'm feeling a little better.

Rikky1
Veteran Member


Date Joined Jun 2015
Total Posts : 2597
   Posted 10/1/2017 6:17 PM (GMT -7)   
i've been working with this horrid illness for 3 years. no idea how i do it. my boss is cool enough to allow me to work from home 1 day a week and work around my "illness surges" throughout the week but its no picnic regardless. if i have to get another job i'm going to be in big trouble and i'm the sole breadwinner in my household.

lyme and its nasty buddies don't care who you are, what you look like, how much money you have, how famous you are or how important it is not to be sick. it destroys everything indiscriminately.

Purrrsiankitty
Veteran Member


Date Joined Dec 2016
Total Posts : 1734
   Posted 10/1/2017 6:20 PM (GMT -7)   
Ashley Ann,

If you can do that, and your employer us agreeable, it would help. More rest than stress is important.

I went on short term disability from my administrative job, and was terminated after a period of time.

It's wonderful to have an understanding employer.

Ashleyann82587
Regular Member


Date Joined Sep 2017
Total Posts : 184
   Posted 10/1/2017 6:25 PM (GMT -7)   
I'm not sure they will go for it...but I'm going to ask. I feel the worst in the morning. So I was thinking 11-5. Instead of my normal 8-9 hour shift. It's just too much. We see like 60+ patients a day. :/ I can barely stand.

Ashleyann82587
Regular Member


Date Joined Sep 2017
Total Posts : 184
   Posted 10/1/2017 6:27 PM (GMT -7)   
This illness sucks. It has literally taken my life from me in a matter of 3 weeks. sad As I'm sure so many on here feel the same.

Purrrsiankitty
Veteran Member


Date Joined Dec 2016
Total Posts : 1734
   Posted 10/1/2017 6:40 PM (GMT -7)   
I feel for you sweetie, I could not get up for any reason. I see my husband off to work, then go back to bed for 4 hours. All this after I usually lay awake for 4 hours between 2am to 6am. Really screwed up!
Moderator, Lyme Forum

Dx May 2015 Quest pos Elisa/neg WB. Doxy only. Restest Igenix lyme pos, neg CDC, 18 +, **23-25 IND, *30 +, **31+, **34 IND, **41+, **83-93++. Retest12/16 Igen 41+, 83-93+ whole blood-plasmid pos. Retest Lyme/co's. Neg co's. Suspected Bart. 7/15 start 16 mo of doxy, azith, ceftin. Finished 09/16. Cowden start 12/16 and stop April 2017 to deal with yeast and leaky gut

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 27943
   Posted 10/1/2017 8:14 PM (GMT -7)   
I haven't worked for 4 years now.


Even though I have good days now...I can't predict when they will be.
And even on a day that starts out good, it can go south very quickly...no pattern - so can't even pick up odd shifts here and there.
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

The Dude Abides
Regular Member


Date Joined May 2017
Total Posts : 428
   Posted 10/1/2017 10:27 PM (GMT -7)   
I work full-time, but I'm lucky to work from home. I'm in Healthcare and work in Technical Support. Despite working from home, there are days when I feel like I won't make it.

Three years ago, when I felt like I was going to have a nervous breakdown, I took a month of unpaid leave, through the Family and Medical Leave Act (FMLA).

This year, I submitted another FMLA request and was approved for two months. This time, however, I was paid 100% of my salary through my Short-Term Disability (STD) benefits.

In both cases, my Doctor had to complete and submit the FMLA/STD paperwork I received from my employer.

Look into this as an option for yourself.

Dahlias
Regular Member


Date Joined Jun 2017
Total Posts : 154
   Posted 10/2/2017 2:44 AM (GMT -7)   
I'm working two part-time jobs that add up to a full-time job. I've worked at a nonprofit for 6+ years, and last spring I took a teaching certificate course (while working, with undiagnosed Lyme) in preparation for a career switch because my marriage is ending and I need to work full-time. I was only able to find a part-time teaching job, so I'm doing both now. And I have to create the curriculum for the elective I'm teaching (as a brand new teacher), so it's a ton of pressure and worry. I love this teaching job and don't want to jeopardize it, but it's a huge struggle every week. I haven't even created a substitute account or plans yet because I'm barely getting through the most immediate tasks.

And then I had to drive an hour after school to pick up my son from private school, which I physically can't do anymore, for now anyway. His dad will not do that for long though, so more pressure there to be able to start that up again.

Anyway, I'm right there with you. I hope you can get a lighter schedule. The place I've worked for 6 years has been understanding and flexible. It doesn't hurt to ask.

Post Edited (Dahlias) : 10/2/2017 6:57:11 AM (GMT-6)


physedgirl09
Regular Member


Date Joined May 2017
Total Posts : 328
   Posted 10/2/2017 3:03 AM (GMT -7)   
I work everyday. I’m a teacher from 730 to 220 then I coach soccer right after. I’m non stop til 6 at night then I come home and have 2 small kids to take care of. I have no idea how I do it or how I function. I’m like on auto pilot. All I know is this totally sucks
Symptoms since July 2016. Very mild: slight dizziness but nothing to call the doctor about.
February 2017=flu like symptoms; felt like i was dying from February to June. Tested positive for active EBV.
June 2017= tested western blot: reactive lgm 23 lgg 41 & 66
June 23= Positive With Babesia By LMDD; Currently taking omnicef, bactrim ds, plaquenil, interfase plus

Ashleyann82587
Regular Member


Date Joined Sep 2017
Total Posts : 184
   Posted 10/2/2017 6:24 AM (GMT -7)   
physedgirl- I don't know how you do it. I can barely stand for more than an hour at work. I have two kids, and I'm a single parent. This has been like a nightmare I can't wake up from.

countingstarsx
Regular Member


Date Joined Jan 2016
Total Posts : 225
   Posted 10/2/2017 6:56 AM (GMT -7)   
I work part time at a group home, go to school full time, and spend the remainder of my time with my toddler. Oh how I wish I could quit my job!

dacarte3
Veteran Member


Date Joined Feb 2016
Total Posts : 1658
   Posted 10/2/2017 7:15 AM (GMT -7)   
I use to power through full blown herxes at work in the early days of lyme. But now the herxing are mild to moderate (if/when it happens).

Some days it's a slow drip of feeling hungover all day and some days it may come in a strong wave that last an hour.

But my point is, just hang in there because it does get better with treatment to the point where you can get through a vast majority of work days.
Lyme (Igenex) - Positive IFA and WB bands 23, 31, 41
Ehrlichia (Igenex)
Mycoplasma (Labcorp) - Score: 595

ABX Treatment: 03/2016-04/2016; 7/2017-9/2017
Buhner Protocol for Lyme and Mycoplasma: May 2016 - Dec. 2016; 8/2017 - Present

Kat1000
Veteran Member


Date Joined Feb 2017
Total Posts : 557
   Posted 10/2/2017 7:22 AM (GMT -7)   
I work full-time. I'm a single mom and without my income our lives would be completely different. I work at home 1-2 days a week as I have a big commute. In the office, I close my door and take a quick nap if I need to. If it gets really stressful, I go for a walk. I think the fact that I "have" to work as opposed to "want" to keeps me going.
pos for MTHTR single mutation; Positive Igenix IgG Jan 2017
March/Apr '17: doxy, Tinizadole. 5/1 samento and exchange mino for doxy. 5/28- switch mino back to doxy, added activated charcoal. 6/9 - stopped antibiox; staying with samento, red root and houttiya and supps. 7/10 added LDN; 8/24 rifampin, samento, red root and supps

dacarte3
Veteran Member


Date Joined Feb 2016
Total Posts : 1658
   Posted 10/2/2017 8:02 AM (GMT -7)   
Kat1000 said...
I work full-time. I'm a single mom and without my income our lives would be completely different. I work at home 1-2 days a week as I have a big commute. In the office, I close my door and take a quick nap if I need to. If it gets really stressful, I go for a walk. I think the fact that I "have" to work as opposed to "want" to keeps me going.


Yes, stress management is key or the head foggy symptoms start to sink in.

I too have to go hide somewhere and work in peace and quite for a couple of hours. Or go for a walk.

And then lunch I don't eat at work, I have to get out of the building and reset.

Hoagie
Regular Member


Date Joined Jul 2017
Total Posts : 374
   Posted 10/2/2017 8:21 AM (GMT -7)   
I work for my local cable company. Don't kill me! I work with hospitals and hotels in coordinating and installing video, internet, and phone services.


I have taken more time off than usual due to doctor's appointments. But, so far, I've been able to power through the days. It's when I get home to a tired wife that things get really tough. Not sure she fully understands that ill effects of this disease. However, I do what I can when I get home because i know her job isn't easy. I just need a break sometimes, though. And the times I need them do not seem to be very good times.

BTW... did I mention we are in the middle of selling our house. Ugh!!

astroman
Veteran Member


Date Joined Mar 2014
Total Posts : 4012
   Posted 10/2/2017 10:29 AM (GMT -7)   
X'ing my fingers that your employer works with you.

At least 20 years of my adult full time working life (with lyme) I sought out flex time hours. I was a self employed mechanical sub contractor for some time too- so again, I wasn't held to the minute and could take longer lunches to rest. The 12 or so years that I didnt have flex time (under watch) were difficult times with more body pain and more coffee.

Standing for long period, or the opposite (sitting) in front of a computer were the worst for my body.. I need to move a little all day, but need to sit to. Lost thousands from jobs I could not do. I still am limited. 8 hrs is a long time if you dont have variety.

Went to school twice and cant realy do directly what I'm schooled for , no flex time or too much standing or sitting or "mousing" (makes carple tunnlel come back).

Post Edited (astroman) : 10/2/2017 11:35:48 AM (GMT-6)


PDXtransplant
Regular Member


Date Joined Jun 2017
Total Posts : 109
   Posted 10/2/2017 9:11 PM (GMT -7)   
I"m a full time teacher too. For the most part, my energy is okay, however, I've noticed stress really impacts my symptoms. Also, I pretty much come home every night and am on the couch, weekends I have a hard time getting myself to do anything, and about every other weekend I'm feeling crappy enough that I CAN'T do anything other than sit on the couch. I wish I could afford a cleaning service!! I think that would help!!!

Temperance
New Member


Date Joined Dec 2017
Total Posts : 1
   Posted 12/6/2017 6:15 PM (GMT -7)   
I am wondering if anyone has experienced a long period of remission (even if not 100%) and then returned to work part-time and what that was like?

For the past year I have had a great job that allows me to sleep during the overnight shift (about 6 hours) as back up emergency support and then 5am-7:30 do some light work before leaving. While it has been a great opportunity it is a very low paying position and I am not being offered a new job that is somewhat high stress and will require my full attention 2-3 days per week. I am concerned about not being able to fulfill my responsibilities with the new work but my overall quality of living and financial stress will be gone!

I've had Lyme for 10 years, diagnosed 4 years ago, was treated by an LLMD for a year and half until he passed away unexpectedly. My treatment was never fully completed so I have managed on my own with some alternative therapy treatments. I would say I function at about 75% compared to my fully healthy self.

Any thoughts or suggestions?

BJD55
Regular Member


Date Joined Jan 2017
Total Posts : 344
   Posted 12/6/2017 8:52 PM (GMT -7)   
I got sick 9/2106 and melted down with extreme fatigue, brain fog, anxiety, insomnia........... I'm the sole breadwinner of the family. Thankfully I had good disability insurance as I was too sick to work until 8/2017. After a month back to work, I decided to retire a year earlier than planned. So now, I do per diem on call work about 4-10 hours a week, though some weeks not at all. I only work when I want to. I'm a speech therapist and demand for my services exceeds supply. I suppose I could work full time if I had to, but I don't have to so screw it. I can't tolerate stress like I used to.

I have been doing a lot of physical labor in my yard and that feels good. Always puttering. Being outside is therapeutic for me. I used to enjoy my interactions with peers at work, I always had a good, witty sense of humor and kept them laughing. I'm no fun anymore. I'm grateful to be getting better for sure, but often feel trapped inside a bubble, separate from the rest of humanity. Fluorescent light make it worse.

I feel for you all that are basically working with a gun to your head. God bless you. Hang in there, you're stronger than you know.

KB69
Regular Member


Date Joined Jan 2017
Total Posts : 216
   Posted 12/7/2017 5:32 PM (GMT -7)   
Ashley, that's a long day, even when we're feeling well. I hope you're employer will be helpful in allowing you to cut back.

I work full-time heading up government relations for an organization. I have been so fortunately to have a boss that understands Lyme (as 2 close friends of hers struggled with it). So, I've been able to work from home during the worst of it.

For me, being able to keep my job has helped my sanity. It's a necessity for our family as well. That said, I know at times the stress of dealing with politicians, and knowing that I have to be "super-on" when I'm feeling completely off is not ideal for my immune system.

I hope you can find a balance that works for you until you feel better and can get back to where you want to be. BJD is right, we're all stronger than we think. You'll get better -- hang in there!

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 27943
   Posted 12/7/2017 7:05 PM (GMT -7)   
Temperance said...
I am wondering if anyone has experienced a long period of remission (even if not 100%) and then returned to work part-time and what that was like?

For the past year I have had a great job that allows me to sleep during the overnight shift (about 6 hours) as back up emergency support and then 5am-7:30 do some light work before leaving. While it has been a great opportunity it is a very low paying position and I am not being offered a new job that is somewhat high stress and will require my full attention 2-3 days per week. I am concerned about not being able to fulfill my responsibilities with the new work but my overall quality of living and financial stress will be gone!

I've had Lyme for 10 years, diagnosed 4 years ago, was treated by an LLMD for a year and half until he passed away unexpectedly. My treatment was never fully completed so I have managed on my own with some alternative therapy treatments. I would say I function at about 75% compared to my fully healthy self.

Any thoughts or suggestions?


Hi Temperance - welcome to our community!

Have you thought about seeking out another LLMD and continuing treatment? Sorry, you didn't ask about this...but just thought I'd mention it.

Is it possible for you to try the new job...and be able to return to the other job if it doesn't work out?
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 27943
   Posted 12/7/2017 7:06 PM (GMT -7)   
I haven't worked for the past 4 years.


My symptoms aren't predictable...so I never know when things could be flaring.
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

NicHostetler
Regular Member


Date Joined Mar 2017
Total Posts : 357
   Posted 12/8/2017 8:35 AM (GMT -7)   
I work as a business analyst/software developer. It is super stressful, but I am lucky that I mostly sit the whole day.

I have no idea how I do it. Some days I can barely find the energy to get out of bed and get my clothes on. I live downtown in a city so getting to and from work is not always easy. Then when I get to work, some days my brain fog is so bad I can barely read.. I have to really really concentrate on what I am doing. By the time I get home all I can do is lay on the couch.

It seemed to be a little better during the summer.. but since starting to hit babesia with mepron it seems like I am back to square one all over again. Very very weak, brain fog, fatigue, etc.

My boss told me that I could get short term disability, but I fear that I will need it even more at some point so I feel like I just need to keep pushing. Her daughter has a rare autoimmune disease, so she gets chronic illness which is good.

The biggest downfall to my job when I am so sick is that I travel overseas a lot. In February I have to go to Italy for two weeks by myself to implement new software at one of our facilities. With each software rollout (every 3 months) I always think "eh I should be better by then..."
Very sick starting around 07/2016
Started treatment 03/2017
Bixain & Cefdinir - 3 months - plateaued
Then Biaxin & Minocycline - 3 months - did not improve
Tinidazole - 500MG 2x a day - 2 weeks
Now taking:
Mepron 5mL 2x a day
Zithromax
Nystatin
Cats Claw - 30 drops 2x a day
Gou Teng - 30 drops 2x a day
CSA - 40 drops 2x a day
Japanese Knotweed - 40 drops 2x a day

Post Edited (NicHostetler) : 12/8/2017 8:52:29 AM (GMT-7)

New Topic Post Reply Printable Version
Forum Information
Currently it is Saturday, December 16, 2017 7:47 PM (GMT -7)
There are a total of 2,906,327 posts in 318,941 threads.
View Active Threads


Who's Online
This forum has 158279 registered members. Please welcome our newest member, Hendrix.
332 Guest(s), 8 Registered Member(s) are currently online.  Details
Rick1310, eldonkey, SeanL88, The Dude Abides, Girlie, emotions, Jstars, dorri