Trying to keep working...

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PSR1
Regular Member


Date Joined Sep 2009
Total Posts : 67
   Posted 10/7/2009 5:21 AM (GMT -6)   
I have had Lyme and I think at least one coinfection for over two years. Started treatment mid-July, and am now on my fourth week of Mepron Zithro. I am trying to keep making it to work, but it is getting harder: I am exhausted, and have awful neuralgic pains & sensations in my back: feel weak most of the time. Has anybody else had experience with this? How do you get through the days? I am actually worse these last few days, and am wondering if this could be a herx from starting to take some Mangosteen (a friend recommended it as a natural antibiotic.) Am going for skin testing today to see if I can maybe be eligible to take a penicillin-related abx.

Lovelabs
Regular Member


Date Joined Jun 2009
Total Posts : 367
   Posted 10/7/2009 6:27 AM (GMT -6)   
I herxed bad the first 2 months of mepron/zith. Then it got a lot easier. I cycled every 4 weeks and had a bad few days but not bad. Try to hang in. These meds are tough!

PSR1
Regular Member


Date Joined Sep 2009
Total Posts : 67
   Posted 10/7/2009 6:38 AM (GMT -6)   
Are you able to work? How long did you have the infection before treatment? Every day is just an eternity...
Thanks

Lovelabs
Regular Member


Date Joined Jun 2009
Total Posts : 367
   Posted 10/7/2009 8:08 AM (GMT -6)   
I work very part time and my schedule is so flexible I can play around with it if I am feeling bad.

I went 15 months from the time I got the rash until the time I was diagnosed correctly and on treatment. Ignored the rash. Thought it was a weird poison ivy. Didn't get symptoms(they were vague) until about 3 months after the bite. about 5 months in came down with the flu. Recovered from that and 2 weeks later collapsed on the kitchen floor. Was in bed for 8 days. Thought it was the flu again. Recovered...then the pain started. Got misdiagnosed by 2 quacks. Finally got into my LLMD 15 months into the nightmare.

Not better yet. Slow road. Completely thankful for my wonderful doctor. That is my story.

PSR1
Regular Member


Date Joined Sep 2009
Total Posts : 67
   Posted 10/7/2009 8:29 AM (GMT -6)   
thanks for that. Today I feel so bad I cannot imagine recovering. Where is your doctor? Have you seen any improvement to give you hope?

Nicky D
Regular Member


Date Joined Jun 2009
Total Posts : 361
   Posted 10/7/2009 3:59 PM (GMT -6)   
Hi PSR1

I also had lyme for about two years before being diagnosed. Throughout the last two years, I have been either working or in school the whole time. However, it wasn't until January of this year that things got really bad for me- and at that time, I was working a very easy job. Even still, I would work, and then go home and sleep, sometimes right through supper.

I'm back in school now, and I can completely sympathize with what you say. It is absolutely exhausting some days just to remember all the medications I have to take. I dropped down to a reduced course load this year, something I would never have considered even two years ago. In fact, the first year I had lyme (but didn't know it), I forced myself to do a full course load at school, and ran myself into the ground and had a breakdown at the end of the year. Now- well, I'm taking a reduced course load, and to be honest, I often feel like I just want to quit altogether. Instead of daydreaming about normal things, I dream about being able to stay in bed and sleep all day...and just stay there for ever...haha

Just don't commit yourself to anything you cannot keep up. I almost signed up for a full course load, because I was hoping I would get better- but the problem is, Lyme has so many ups and downs, and herxes from new antibiotics, and you have to plan for the worst days, not the best. However, the few people I've talked to who had the same time between infection and treatment, all generally started to feel improvement by (or before) the six month mark. So while you have to accept that you may not feel better in the next month or two, you will see improvement eventually.

If you are running yourself into the ground with your work, maybe you need to consider cutting back somehow. Could you switch to part time? Or reduced hours? Does your work have someway to work from home? Even if your company just lets your do it as a short-term thing, (say for a month, or 6 months, or whatever they will agree to), it could help you a lot.

I'm not trying to be depressing- I do believe you will see improvement, and it could happen as soon as in the next month, but I know what happens when you push yourself too hard. Treating Lyme is more like a marathon than a spring- so you have to pace yourself.

Hugs,

Nicky

Lovelabs
Regular Member


Date Joined Jun 2009
Total Posts : 367
   Posted 10/7/2009 4:46 PM (GMT -6)   
I have seen improvement. Sometimes it's hard not to focus on what is bothering me now. But over a year ago I couldn't even use my hand. I couldn't write, open water bottles etc. Now my hand is fine. I do get pain in it when I herx but it isn't horrible.

Some days are great. A lot of days are still filled with a lot of pain and fatigue. The kind of tired when you get into your car and the sun shining through just makes you want to curl up and close your eyes! It is bad. I dream about my bed when I am not in it a lot of times. I feel in my case I am herxing as to before treatment it was the Lyme just getting worse and worse.

Keep your chin up and keep plugging away. It is easy to get down sometimes. Your days will get better. I promise.

You do have an LLMD I am assuming?

Nicky D
Regular Member


Date Joined Jun 2009
Total Posts : 361
   Posted 10/7/2009 5:00 PM (GMT -6)   
Aww lovelabs-when you talk about getting in your car and the sun shine making you want to curl up and go to sleep- that's me exactly! For a while, it was so bad, I had to quit driving because I'd fall asleep while driving (at like 4 in the afternoon).

PSR1
Regular Member


Date Joined Sep 2009
Total Posts : 67
   Posted 10/7/2009 5:22 PM (GMT -6)   
Thanks to everybody. Nicky D: I actually got into a PhD program this year, something I had wanted to do forever, and had to defer until next year. it was so disappointing that I just cried. I cannot really quit my job or cut back much, but I can probably take some sick time. I cannot sleep, and the neuralgia, pain and weakness are just so debilitating I get very hopeless: just need some reassurance that people do get better. Yes I have a LLMD: he says I'm actually making progress - some symptoms are gone and I do have a good day occasionally - but it is nice to hear from all of you as well. Thanks and here's hoping we all keep making progress!
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