posted
I am new to this Lyme's stuff, although not officially. Tests from PCP came back today, negative for everything. Again. I talked to him about Lyme and he ran a test. Doubt it was the right test. I'm just so sick of hearing "everything's normal" when I know darn well it's not !
I've been everywhere else, to lots of specialists, all who say there's nothing they can find. Lyme is about the only thing left that fits but apparently it doesn't "fit" into the standard docs radar. I've researched the local LLMD and we are trying to figure out how to go about seeing him.
Lucky for us, we spent lots of $$ on copays, etc seeing the other docs. Our insurance also changed this year to "choose well, live well". We lovingly refer to it as "choose well, lose well". We figure it will cost us about $10K this year, just for the kids (5 of them, 3 SNs) and our regular stuff. Now I am finding that the Lyme stuff is likely to be denied coverage.
How do you all do it? I feel like I am losing my sanity. Aside from the fog, the pain, and the sickness of 2+ years, the worry over finances is now in the mix. Any suggestions for maintaining sanity and sorting this out would be greatly appreciated !
Okay, I guess this post was a bona-fide whine. Sorry about that.
Lisa
Posts: 41 | From SC | Registered: Jan 2009
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Starfall1969
Frequent Contributor (1K+ posts)
Member # 17353
posted
((((((Lisa)))))
Whine away, my deaar, whine away.
While it's not good to do it all the time, sometimes you just need to unload.
I understand what you're going through. I've only been fighting really bad symptoms for 8 months, but that's been hell.
And like you, I've been to doctors and specialists, and all say everything is normal.
I've been put on all kinds of antidepressants, all of which have resulted in serious reactions and some trips to the ER. (You know, it's just stress--all in my head)
The only thing that has them convinced that there is something physical going on is that I have lost 30+ pounds already and am still losing despite eating normally.
I have an appt. with an LLMD next month, but i have these fears of what if he says it's not Lyme, then what?
And I understand where you're coming from with the finances. We were in good shape financially before all this happened.
Now my husband lost his job, our insurance coverage ended this week, and I don;t know what we're going to do.
We have my husband's retirement savings, but he's really trying not to dip into those.
I feel like a curse to him because he saved for all these years only to marry stupid me who ends up getting sick and draining his money.
The only thing that keeps me sane some days is my faith and this forum.
Posts: 1682 | From Dillsburg, PA | Registered: Sep 2008
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posted
It's not a bad thing to whine. We all need to time to time. So don't feel bad about letting off some steam.
The financial drain can be a tough deal. There's so much ignorance about LD and a seeming unwillingness to learn.
I finally quit going to docs because they weren't doing anything. I started self treating the most bothersome symptom and got lucky. That's kept my medical expenses down to a dull roar.
Posts: 51 | From Reno, NV | Registered: Dec 2008
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bettyg
Unregistered
posted
go to my newbie package links, and print off pages 74-92 on FINANCIAL BURDENS after you have copied it all to your word processor, like ms word!
you'll use many of these great suggestions compiled from many members~
posted
Thanks, guys! I know that we'll figure this out somehow but yesterday was really a day when I didn't see how.
Thanks for the pages on $$, bettyg. I'll print them off for my husband, who is ultra-stressed. We knew my being sick was going to be expensive. Just didn't bank on so much of it not being covered by insur.
I have tried everything to make this better on my own. Docs, quit teaching, simplified life, rest, etc. When it's not acting up, I can get by. When it is acting up, it's so debilitating. I had given up on docs but now am being forced back. I made an appt with an LLMD yesterday. I hate to put so much hope in one man, but I am totally counting on him to fix me.
Lisa
Posts: 41 | From SC | Registered: Jan 2009
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bettyg
Unregistered
posted
lisa,
i'm sure those pages will help you as much as possible ... combined wisdom from MANY MEMBERS over many years there!
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randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
have you had the igenex tests?
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
Hang in there.
So glad you made an appt with a LLMD.
I knew that mine was the answer to my prayers.
(Thanks Lymetoo for referring me!)
Sending you positive thoughts and prayers.
Lots of hugs too.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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posted
I haven't had the Igenex testing done yet. I am going to wait until I see the LLMD and let him tell me exactly what tests he wants done. I'm sick of being stuck!
My appt is the beginning of May. I'm hoping to get in earlier on a cancellation.
Posts: 41 | From SC | Registered: Jan 2009
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Sorry about that.
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