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newly diadgnosed and wondering about work

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Posted 7/26/2012 11:40 PM (GMT 0)
12 years of symptoms. Saw LLMD. Igenix came back + 3 Igm bands. Start treatment Wednesday. I am a school nurse and set to return to work 8/14. Anyone had trouble working while on treatment. Mine is severe anxiety, depression, PVCs, joint pain, back pain, severe insomnia, constant ear pain and overall just tired all the time. Anyone with any luck on short/long term disability with a confirmed Lymes diagnosis? I was told disabilty was not an option due to Lymes not being considered a disease. Will treatment make me feel worse in the beginning? This is totally new to me so any advice would be appreciated!!! 
Posted 7/27/2012 1:48 AM (GMT 0)
mxmom, I'm sorry to hear about your health!  I also work at a school & am quite worried abut going back to work in a month. Last spring when I was very sick, I had to use up 5 or 6 sick days just to get through the last 6 weeks of the sch. year.

So far this summer I've been ok physically, but my llmd is gradually adding more abx to my treatment to treat Bartonella,  so I'm nervous that I'll be sick when school starts back up.

I think most people with Lyme who work(hubby included) just get through it day-by-day. Sometimes he gets thru work & crashes when he comes home. Bills gotta be paid eyes

Try not to stress about it, easier said than done, I know!! You will get through it!

Oh, I tried applying for disability awhile ago--my regular md said that it'd have to be for something else, as Lyme is so easily dismissed. I was immediately denied, & I dropped it, as I knew it wouldn't fly. Thankfully I feel pretty good lately.

Good luck!

Posted 7/27/2012 2:53 AM (GMT 0)
tickssuk,

Thanks for your reply. I will give it my best! I am just so physically tired because I don't sleep and it is hard to imagine going back! Best of luck to you too!
Posted 7/27/2012 6:13 AM (GMT 0)
Hi Mxmom,

While many people find that treatment makes then feel worse before they start to improve, it is different for anyone. If you take a look at the "New to Lyme?" thread at the top of the forum, there is a section on detoxing. Regular detoxing can really help to relieve the effects of bacteria die off.

Getting good rest is very important. Try to remove stress from your life and simplify as much as you can. And like others here have said, don't worry -- especially don't worry about things that haven't happened yet!

If you have to apply for disability, others have found that claiming for something like chronic fatigue or depression is more successful. It is a very long process and requires a lot of documentation -- maybe you'll be feeling better sooner than that!

Take care!
Posted 7/27/2012 10:43 PM (GMT 0)
HI mxmom,,
Wow, we have same symptoms to a T,, except I do not have cvp. or I dont know what your referring to.. Insomnia,, has been bad before treatment and during.. but for the most part all the other symptoms have gone away while taking my doxy.. Now I did have a few days that I was wiped out in the last 3 weeks on doxy.. don't get me wrong.. you will know the days you just have to rest and take a day off work.
I would ask the doctor for something to address the insomnia, mine gave me xanax.. not very many tho.. they are funny about that drug. But it does help me sleep. It works for the anxiety too.. I feel much better on it.. they just will not address anxiety as a chronic symptoms.. if a drug works what differance does it make it,, if it is something you need to take for the rest of your life even..


But alas the doctors are not going to give you long term xanax these days.. I was on it for 5 years before I knew I had lyme. I knew I had panic and anxiety.. then the new NP started making it hard to refill.. so I just went off the stuff got tired of fighting her.. and I have not felt good really since.. I manage to leave the house on a needed basis.. but I know I was happier and coping better on xanax.

I dont really understand why if a drug works for us.. why we cant have it. OK lol rambling this is a pet p of mine..
Posted 7/29/2012 2:45 AM (GMT 0)
If you're applying for disability through your employer, that shouldn't be as difficult. Right now I'm in the middle of a pretty lengthy disability claim for lyme disease and part of me regrets having told the truth (that I have lyme disease). I think the trick is to not raise that red flag - I mean most symptoms can be classified as their own disorders nowadays - trouble sleeping from lyme is insomnia, lyme-induced anxiety is still anxiety or anxiety disorder, etc. They ask for specific diagnoses, but they also ask for symptoms and other conditions. If you have fibromyalgia pain, you'd qualify for a diagnosis of fibromyalgia. Before being diagnosed with lyme, I was diagnosed with chronic fatigue syndrome - they have the same symptoms. Also list any co-infections, viruses, etc.

Make sure you discuss these concerns with your doctor - there's a lot of variation as far as how aggressively you can treat all of this stuff. I think the most important thing is to rest enough, even though it can be the most annoying part of all of this. Even a 5 minute break at work can really help if you really just rest during it. Resting as soon as you get home from work rather than pushing through your day. My philosophy is to listen to my body - when it tells me to rest, I do, and if I can't, I try to make it up to my body later on, if that makes sense.
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