posted
start with an apology as i feel so silly writing this but i really feel i am about to lose my mind....besides the fact that i havent felt well most of this year....seen numerous drs....hospitaised twice by neuro in september for migraine (never had before!!) and vertigo....with ongoing symptoms....back and forth to them now primary did lyme and came back +.....the time i have spent and messages left for people to call me back, or correct errors on forms that could cost me my job....no one seems to want to listen and no one is any hurry to help.....my fmla runs out in 3 weeks what then.....they wasted 7 weeks of that for me....now the short term disablity havent paid in 2 months as they are doing a pre exisitng check of which i dont have they are behind as they forgot to send me a form, now realise 6 weeks later from date of claim...so now i have to wait again.......i felt they were trying to catch me out on the phone with their questions...and like many other people have said what happens if symptoms continue after anti biotics.....whos going to admit they got their migriane diagnosis wrong for 2 months...and say it was the lyme does that then mean if lyme makes me unwell in the future they will consider it a pre exisitng condition???? as it was dx'd during this but not the main issue according to drs.......i really feel i am losing it...dont know where to go for help or what the future holds for me.........i dont have the $$ now to see a llmd because of all this........just dont know what to do.....apologies again but know a lot of you have been in the same posititon so at least may understand the frustration.....
-------------------- Oct 09 Positive CDC Western Blot Jan 10 Positive Babesia Duncani Jan 10 Cd57 28 Mar 10 EBV, IgM, IgG HHV-6 IgG Posts: 739 | From NC | Registered: Oct 2009
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feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
Hang in there Florence. Nothing about this disease is easy. Roadblocks are everywhere when we don't feel well enough to deal with them....it is a crime. I have the migraines too...can't function with them.
Never feel silly about writing something like this....people here understand and that is what you need right now.
Feelfit
Posts: 3975 | From usa | Registered: Aug 2007
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
You are in a pickle my dear!
So sorry this is weighing so heavily on your mind.
Have you reached out to the NC support groups?
Perhaps they can assist with finding a local doctor who can get you on track?
But if I were you...
I'd jump in my car and head to the mountain for a day or two.
You need to get your spirit back. It has been beaten to death.
posted
I agree with tin cup this with lyme your in for the long haul. Unfortunatly its not like a 10 day cold and walla your better. (oh how i wish)
Your ill and its hard enough to deal with being sick and not being able to do much period. Then to be stressed out to the max trying to pull things together for treatment is only adding to the stress.
If you can find a friend to help you or family member who can call these people for you.
I get to the point i just dont want to deal with anything. The stress also makes you feel worse.
Like Tin cup said try to do something you can enjoy or just plain rest.
Feel better soon
Posts: 112 | From Ohio | Registered: Aug 2006
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posted
The doc I went to wasn't an official llmd. I called the lab in CA and asked who from my area used that lab for lyme testing. I figured if the doc used the good lab, he would have a clue about lyme. There was only one doc within reasonable driving distance (60 miles away). He has been willing to treat me long term with oral antibiotics If you can't access a true llmd, maybe you could call potential doctors and ask if he treats lyme disease with a standard limited antibiotics or if he is willing to treat long term with antibiotics....
Maybe one of your existing doctors would be willing to treat you long term at least with oral antibiotics.
I can't tell you what to do, but I take a lot of medications just to cope with life on many different planes, mental and physical and lyme.
I go to a psychiatrist (antidepressants etc) and a psychologist.
I see a neurologist....for neuropathy pain control and he is treating my cognitive problems with Namenda I don't know if it helps others like it has been helping me, but it certainly was worth the free one month trial pack he gave me. It gave me my brain back.
I see a primary care doctor/family practice...for my lyme he gives me ceftin and flagyl (generic) antibiotics and flexeril for the bodyache pains
In my past bout with lyme, I went through a whole lot of different pairs of antibiotics......even returned to work still taking them
oh yes, use the enter button a lot to give our brains the space they need to process all these complicated and simple words. I get dinged on that one a lot.(remainded about it)
-------------------- Lyme is like the flu. You can get it and recover, but you can always get it again. Posts: 607 | From (deer tick)Heaven! Angeles National Forest | Registered: Oct 2000
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