posted
I posted a few weeks ago about a friend/coworker of mine who i spoke to shortly after I started lyme treatment last month.
she told me she hadnt been feeling well. and that her symptoms have been going on for 2 years. she feels much better in the summer but really crappy during the winters.
she said she has horrible insomnia, dizziness where she sees the room spin, one of her ears feels blocked, and she missed 21 days of school the past 3 months alone bcuz she couldnt get out of bed. some days shes functionable and then a few days later she feels like crap
her ID doc took a lyme test. and said the first one came back positive (assuming its the elisa) and that the second one came back negative (assuming Western Blot) she was referred to an ENT doc who diagnosed her with mernieres diseae after a series of tests. I tried to get her to understand that I truely believe she has lyme. she wont listen to me.
she believes her ID doc and her ENT. she said she knows what she has and its not lyme. its mernieres. then her ID doc fed her some crap about thinkin that if she even ever had lyme, it was caught in early stage with doxy she was on for her acne at the time. I told her theres no way to know how long she had it. and that the fact that her elisa is positive shows that she has lots of antibodies present.
oh well . some people really dont listen SO FRUSTRATING!!! needed to vent . thanks
Posts: 995 | From somewhere out there | Registered: Oct 2010
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Hambone
Frequent Contributor (1K+ posts)
Member # 29535
posted
Some day when she can't stand it anymore, she'll start to think about all you've told her.
Some day she'll wish she would've listened.
No since in pestering her about it. It will just push her away.
Posts: 1142 | From South | Registered: Dec 2010
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momlyme
Frequent Contributor (1K+ posts)
Member # 27775
posted
Unfortunately some people believe that just because doctors go to school, they know everything.
Not when the schools and the systems are corrupt.
-------------------- May health be with you!
Toxic mold was suppressing our immune systems, causing extreme pain, brain fog and magnifying symptoms. Four days after moving out, the healing began. Posts: 2007 | From NY/VT Border | Registered: Aug 2010
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Ive decided im not going to say another word about it to her. but its just so hard. watching people suffer when you know what they need to do yet they wont listen
and I agree that the reason shes not listening to me is because I dont have the letters MD after my name! AHHHHH. the thing with lyme disease is the patients of lyme know more than mainstream doctors about lyme. so lyme patients are extremley knowledgable. the general public just doesnt get that.
Posts: 995 | From somewhere out there | Registered: Oct 2010
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posted
The symptoms you mention do fit mernieres perfectly.
However the positive lyme test would prompt me to look into it a little further.
If it's lyme she'll figure it out sooner or later. Even if she seems less than receptive to your opinions now, i'm sure it will at least be in the back of mind for consideration if her symptoms do not subside.
You did all you could do. Don't sweat it.
Posts: 339 | From Outer Space | Registered: Aug 2009
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posted
^ Well yea I know her symptoms fit mernieres but from what I've read on these forums, Mernieres is always caused by something else. Its like CFS, Fibromyalgia etc etc. its a set of symptoms not an actual diagnosis.
The fact that her Elisa is positive is huge. shes lucky her elisa even came back positive because ALOT of peoples dont. mine came back equivocal. and i have lyme
Posts: 995 | From somewhere out there | Registered: Oct 2010
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randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
i've been through this so many times i can't count.
just give up, you're wasting your breath and making her angry.
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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lymie tony z
Frequent Contributor (1K+ posts)
Member # 5130
posted
Well gee, my medical dictionary tells me meieres disease
IS caused by a tick bite....unfortunately the
ID and ENT md are correct....they just have'nt
given her the correct dosage of doxi if it's
just a low dose she was taking for acne....
It was probably not enough....besides the fact
that the tick bite most probably gave her a
pathogen that doxy does'nt wipe out...like
babs....
No point in making a big stick about it with
her though she won't get any better without
at least trying something for the zoo/critters
that are allowing the spirochetes to ride along
and hide out on them....
Too bad the IDSA folks are'nt monitoring this
thread....they would find out the usual dose
of doxy they recommend for resolving TBD's are
only good at the higher doses and not at all
efficacious for any of the other co/infectins.
too bad she won't get the PROPER care she needs-
gee...even we who know what we have can't get
that and even sometimes with unaggressive llmd's!
zman
-------------------- I am not a doctor...opinions expressed are from personal experiences only and should never be viewed as coming from a healthcare provider. zman Posts: 2527 | From safety harbor florida(origin Cleve., Ohio | Registered: Jan 2004
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tickled1
Frequent Contributor (1K+ posts)
Member # 14257
posted
My father in law has meniere's-is going deaf from it-and hands keep clawing up. He lives on 90 wooded acres and has had many tick bites and has hunted all his life. But, don't try to tell him it's Lyme! Posts: 2541 | From Northeast | Registered: Jan 2008
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sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
My cousin is the same way. He has been ill for 2 years now, has 200 wooded acres and is also a hunter.
He has been to "mayo" clinic and to numerous doctors. They all keep giving him different diagnosis. The lasted diagnosis is muscular dystophy. He is awaiting a DNA test to prove it.
I just feel really strongly that he likely has LD. We have discussed it a few times, but he doesn't buy it. So I had to just back off. Every time I see him, I keep my mouth shut.
If this DNA test doesn't prove muscular dystophy, then I might bring up lyme again. Depends on how open he seems at the time.
It is very frustrating!
Posts: 4035 | From Mississippi | Registered: Jul 2008
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philly78
Frequent Contributor (1K+ posts)
Member # 31069
posted
Well, my MIL had lyme and was diagnosed years ago. When I first started telling her about my vague symptoms, she swore I had lyme. And what did I do? Not listen because I would feel better and just blame it on me being anxious. Little did I know that the lyme was contributing to the anxiety!
I would get mad at her as well, and tell my hubby....she's nuts, she thinks everyone has lyme!
Fast forward to this year. My symptoms got the best of me and my PCP decided to run a lyme titer. Came back positive, but my western blot was negative although I was reactive for Bb specific bands....just not enough.
This obviously made me curious to research a bit more and I'm glad I did! I just started tx last week.
My point. The fact that you said something may have an impact on her later. I know my MIL refrains from saying "told ya so! every time she sees me. I can just feel it!
-------------------- When faced with pain you have two choices....either quit and accept the circumstances, OR make the decision to fight with all the resources you have at your disposal. Posts: 1000 | From PA | Registered: Mar 2011
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Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
Maybe she will come around some day and maybe she won't. I've seen too many family members that I love suffer and die, because they would not listen---not only about Lyme, but other illnesses that they could have done something about but wouldn't.
And I have colleagues (in the Natural Health field no less!) who have Parkinson's, etc. Will they listen and do anything about Lyme, even given that they have had lots of bites?? No!
It's painful, but there is nothing you can do. It's great when people do listen, but most don't. Most would rather suffer and die, if it comes to that, than change their life or their mind-set. Go figure.
Posts: 3778 | From around | Registered: Mar 2008
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
philly
it helped me to read this:
"I would get mad at her as well, and tell my hubby....she's nuts, she thinks everyone has lyme!"
my kids have been doing that to me for years. even tho it was me that made sure 3 of them got good lyme tx early
the 4th is getting it now
(they are all adults now)
but your words give me hope that if/when they need lyme help in the future they will reach out to me
that is now happening with this one son-the only one who wasn't dx and tx when they were young
the way i deal with this whole issue of worrying about those who probably have lyme but are in denial is
-i say a short sentence about testing, sx, and importance of good early tx and then i tell them how to contact me if they need more help
-i rally work at turning off worrying qbout these ppl after offereing help because the stress of worrying about them is bad for my health
-i try to stay as up to date as possible on lyme tx so i am ready when someone asks for help
- i put my energy toward taking care of me
but philly-i just want you to know your statement really helpe me-cuz-esp when it is kids it is hard not to worry and get emotional you give me hope they will remember i might be able to help when the time comes.
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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philly78
Frequent Contributor (1K+ posts)
Member # 31069
posted
Glad I could help!
Ya know...I work as a nurse in the ER and for the longest time put no faith in alternative medicine either. That has since changed though and I am seeing the many benefits of going outside the mainstream.
Now I'm trying to get some of my coworkers to do the same!
This whole experience has changed me and even though I'm sick I feel that this happened for a reason. I'm a woman of faith and play the cards I am dealt.
My plan...although I'm not sure when it will happen is to go back to school and become a nurse practitioner who is lyme literate! I feel it is now my duty to help others out there so they won't have to go through some of the 'horror' stories I have read about.
-------------------- When faced with pain you have two choices....either quit and accept the circumstances, OR make the decision to fight with all the resources you have at your disposal. Posts: 1000 | From PA | Registered: Mar 2011
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My plan...although I'm not sure when it will happen is to go back to school and become a nurse practitioner who is lyme literate! I feel it is now my duty to help others out there so they won't have to go through some of the 'horror' stories I have read about.
- That would be wonderful!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96227 | From Texas | Registered: Feb 2001
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map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
Just tell yourself when people look at you like your story and experiences with lyme are crazy....
Someday soon the world is going to know the truth about Lyme disease & co. Then I won't be so crazy anymore.
We can scream I told you so from the mountaintop!
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
philly-many of the llmds we have became llmds because they or a loved one got lyme and when the mainstream docs could not treat them...they looked deeper and became LL
i believe things happen for a reason also and one of the ways i keep my sanity thru all of this is to try to figure out what i am supposed to learn or do because of my experience with lyme
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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