posted
I'm a single mom, recently diagnosed (July 20 they finally confirmed LD) and I still haven't been to my follow-up with PMD and I couldn't an appointment sooner than 8/15 for the Infectious Disease doc who is supposed to be LLMD.
I'm just sooo tired today. Last week, I had no problem making it through the work week, but I don't know if I'm going to make it through this one. I can't afford to take an unpaid leave and all my sick time is used up and I'm digging into vacation time. Plus, my boss is just getting fed up with my being sick all the time. (She'd be much more understanding if I had HIV or Cancer.)
valymemom
Frequent Contributor (1K+ posts)
Member # 7076
posted
I share that opinion. This disease is so awful for that reason. No one knows the ongoing hell.
Stay in touch because you want to see a recommended llmd - someone with experience with signs/symptoms of chronic (clinical) lyme and co-infections.
Have you checked for such a doctor in your area?
I regret now that we did not seek a "known" llmd with years of experience for my son two years ago when he was told he had lyme based on some positives in Igenex bloodwork.
Talk and listen to everyone here. Every question and thought is worthy of a post.
Posts: 1240 | From Centreville,VA | Registered: Mar 2005
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Greatcod
Unregistered
posted
I have never been in your position exactly, but there was a point where I was very very tired, but still working, and asked the Doctor who had misdiagnosed me with Chronic Fatigue what to do . He said "Just keep working, it can't get worse." So I worked till I dropped, and it got lot worse. I don't want to scare you, but neither do I want to see you destroy your health totally.
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Greatcod
Unregistered
posted
On a more practical level, if you have a benefit package at work, they sometimes include a short-term disability component- one to three months. Note from the doctor, and all that.
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HEATHERKISS
Frequent Contributor (1K+ posts)
Member # 6789
posted
Get the best Doctor you think you can't afford and do it quick.
In the long run you'll save money time and your health.
I wasted a month and wish I had shelled out the moolah sooner for my wonderful cash LLMD.
I'm working more and have been feeling better. It goes up and down. But the ups are getting better and better.
Don't waste any more time. Also alot of people end up hypothyroid. Get your thyroid tested. Have the ID duck do that along with the other tests he'll do.
I emailed you a list of LLMD's. There are 2 doctors in my area that everyone raves about. I go to one of them.
You are only 40 minutes away......... from me and my LLMD.
Good luck, Heather
Posts: 1974 | From ABERDEEN, NJ 07747 | Registered: Jan 2005
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posted
Most of us here are very skeptical of any ID drs. Make sure you get several referrals from happy, satisfied customers of this dr. You don't want to waste valuable time and money on this dr [or duck].
I feel for you. By the time I found out I had Lyme disease, I'd already been disabled for 6 yrs. I didn't have to "worry" about showing up for work!
------------------ Do not take anything I say as medical advice. I am not a doctor, but I DID stay at a Holiday Inn Express! oops! Lymetutu
Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
Hi LymeinPrinceton! Welcome. There's light at the end of the tunnel!
I know what you mean.
I'm a single working mom too.
Sometimes I am SOOOOO tired that I fall asleep at my desk. Or at meetings. Once, even in court. I jolt awake with a shot of adrenaline, mixed with guilt! OOPS! SORRY!
Other days, not so bad.
When you start treating, you might have some ROUGH days where you feel much worse than tired!
But hopefully once in treatment you'll start on the upswing and you will be glad you were able to work through the rough parts somehow, assuming you can... Maybe you can get disability for the roughest part of it if your boss is not understanding.
I am lucky in that my office has been very understanding, even weepy with worry... The problem is more ME, with guilt at not keeping up or overburdening already swamped co-workers.
Like others have said, keep a VERY wary eye on your ID doctor...they're notoriously anti-Lyme and will undertreat you and proclaim you cured.
Try to think positive... It really helps.
Sometimes I think that getting my sorry arse up at 5:00 a.m. and taking care of my kid, working all day, then doing all the after-work stuff single moms do is -- despite seeming to wear me to a frazzle - actually one of the things that keeps me going.
Draw on any help you can to get you through the hard parts and post here often... I will hope your treatment goes well for you and you're feeling better soon!
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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posted
I am sooo tired all the time that I need to take naps in between my sleep or sleep in between my naps...sometimes 18 hrs a day.
I will be seeing an LLMD in 13 days. I did the Infectious Disease route that ended too short and not enough!! The Infectious Disease Association has their own rules and regulation governing the treatment of Chronic Lyme. Supposedly I am cured...NOT.
Then why do I feel so out of it and lousy and wierd? It has been 33 yrs with it now and first trip to an LLMD. I have been to more ducks since diagnosis in 2001 than you can count on two hands...all ducks.
Please find a good LLMD.
Jean
Posts: 324 | From Lexington, KY, USA | Registered: Dec 2001
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