Maybe it's because I'm quickly losing my academic skills to this rotten illness and dwell on this too much lately? but....since we have a hell of a time as it is trying to have this disease recognized in the medical

communities and taken seriously, let's call it what it is? ( My sane mind can't believe I'm actually going to post this)
 

So, just to point out, some docs are saying Lymes, which may be why some patients are too. At the time, this was all new to me and I didn't know what to call it, so I didn't correct her (but I kept thinking Lymes was wrong). I always found it odd.
I'm never sure whether or not to correct people because I know how much everyone is suffering, but I have always found it to be confusing when I try to respond.

Thanks for bringing it up and raising our awareness,

Joanie
 

My LLMD once told me to try saying Erlichia and see if you get a better response from people (especially doctors). I always do. People seem to take that more seriously as a "real" illness, I guess because it sounds more technical and therefore people assume more identifiable by blood tests than Lyme disease sounds like it would be.

Interesting.

Joanie
 

Naming this outbreak after the town in which it occurred, he called this illness Lyme Arthritis. By the late 1970s it was recognized that the illness had systemic manifestations including neurologic, rheumatologic, dermatologic, and cardiac components and so the name of the illness was changed from Lyme arthritis to Lyme Disease.

In 1982, the infectious agent Borrelia burgdorferi was identified (4). Soon thereafter, reports indicated that the European neuroborreliosis was caused by a similar if not identical organism (13). In acknowledgment of this infectious agent, Lyme disease is now referred to as Lyme borreliosis.

But few could pronounce Lyme borreliosis so in 1992, it became Lyme Disease.

Then Lyme.

Dr. Willy Burgdorfer identified the microorganism. He wasn't crazy about having a terrible bacteria after him (borrelia burgdorferi). He's a true humanitarian.

Burgdorfer's Disease has a more "legitimate sound" to it. Perhaps we should look into changing the name? That might get some "recognition" and press.
 

I excuse Lyme newbies for it, as it's a common mistake. But medical 'professionals' should know better.

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-=(RainmakeR)=-
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A couple of years ago the local SPCA gave our support group a booth at DoDah Day (people dress their animals up for prizes). They painted our group a great big sign that said LYMES. But you know...they gave us a booth. So it was worth it.
 

Well, I have to say hearing people say "oh ya, you got Lymes" drives me totaly nuts sometimes.

I am now called "The Lyme Queen" in my town, as everyone thinks of me as a poster child for Lyme Disease. As I have had it for over 2 years, my son was just recently diagnosed, and I have sent at least 15 people to the ER with a confirmed bulls-eye for treatment in the past 2 years.

I have bought books for the library, and can be seen all over town distributing Lyme Brochures. I'm sure some think I am a little odd

So I guess I really don't care if they call it Lymes or Lyme as long as I am making people aware about this disease and getting others talking about it's dangers.

But deep down, I have to say it does kinda irk me

~LymeBrat
 

The many docs I've seen and begged for help over the years think/thought I'm crazy. Today I simply tell them if I'm not I sure as H should be by now!

Keep up the good work ( If there's a God, they'll eventually "get it" )
 

My neighbor, Erin-who I never see, told me that she mentioned to someone in the sub that I had Lyme-she is fairly aware-as her mother was a gardener

Well, The lady-who has never set eyes on me-told Erin-that if I would just stop eating all citrus fruits-really-I would be just fine!

We had a good horse laugh over that one!
 

hearing the word Lyme's or Lymes or even Lymie (aren't they from England?), erks me like...

fingernails on a chaulk board

My LLMD, Dr. C of MO, always refers to the word Borreliosis when refering to Lyme Disease....

Oh, and when folks say to me Lyme's Disease, I, always, say back, "it's Lyme Disease, named after a town in CT named Lyme, not Lymes, CT."

But, then again, my regular PCP who has said to me and Chip that we know more about Lyme's Disease than he, still says it wrong...

oh, well, I travel on to read other posts now.

Rosemary

[This message has been edited by rosesisland2000 (edited 28 August 2003).]
 

One time I read in either Dear Abby or An Landers where someone had written in because the column capitalized AIDS. The woman said it was offensive because you dont capitalize cancer! HA!

***
And really I dont think it should even be called Lyme since the disease already existed other places. But really it isnt Lyme at all. Lyme is more of a nickname.
***

On vacation my kids got grossed out at a gift store that was selling "Old Lyme Carmel Corn"! Something maybe we should consider as a possible fundraiser product- LOL????
cootiegirl
 

it is my understanding that now the Policitly Correct thing to say is HIV since it has discovered to be an actual virus rather than a syndrome.

Since this, too, can be applied to Lyme Disease...the politically correct thing to say when referring to CFS or Fibromyalgia...well, someday it will be.

Rosemary
 

They are beautiful old artist colony towns. I bet it didn't give the property values any boost to have a disease named after them!

Regards,
Shaz
 

You are correct. AIDS is an accronym. That is why it is so funny.

Many people do not know this but there is another word that is accronym. It was used by the police in the 1800's when they would arrest prostitutes:

For
Unlawful
Carnal
Knowledge

So far as PC I dont know. But HIV is more correct for someone infected with the AIDS virus since not all people move into AIDS.

hearing the word Lyme's or Lymes or even Lymie (aren't they from England?), erks me like...

Sorry to offend you, Rosie, with my term *Lymies*, it was in referance to "Several persons with Lyme Disease" All of which are not offended to be called that. We are a little band of sufferers-that talk about our experinces and progress with the disease fairly frequently.

Much positive support is derrived from this group of sufferers.

I have been told there are actually two correct terms for Lyme: Lyme Arthitis, which is the term if your main manifestations involve arthritis

Or Neuro Borrelia: which is used to describe the later(Suppossably Later)neurological form of the disease

Also forgive me, as I will type whatever is faster to get my point across-I have some cognitive issues that pertain to the Lyme, and my spelling, and writing have gone down-hill

And as a Northerner in the South-there are different slang words used everwhere, I forgive anyone who slaughters the word
Lyme-if they have a good heart

I just thought it was funny my nieghbor thought I was allergic to citrus fruits-when she heard the term *Lyme Disease*
 

Two years ago I got this disease when I was home visiting in Connecticut. On that trip, I went to the Florence Griswald museum in Lyme Connecticut. Great museum full of impressionists paintings. My husband and I were looking at the paintings, and there in-between these wonderful works of art was a framed picture of a tick and the story of Lyme disease. We found it to be odd at the time. Odd being that it was placed with all the impressionist paintings. Little did I know then, that I was just beginning my own ordeal on that very trip!

I don't know how people in Lyme feel about this disease being named after their town, but they did put up the picture of a tick and a little info about Lyme disease in one of their museums!

Joanie
 

These miserable disease-carrying ticks are literally everywhere and I wish we all could pull our heads out of our respective A's and quit brushing it under the political rug and DEAL with it.
 

Next time a doc says it wrong, tell her/him that Lyme CT for which it is named is a town.
It was not named for being discovered by a person, so no person named "Lyme" can claim it and call it "Lyme's disease."

As for "Lymies": I never liked that nickname because it sounds too "cute". I don't picture anyone over 10 when I see or hear that and I certainly don't picture elderly sick people or deathly sick people of any age.

I always said and wrote "Lyme disease patients" to preserve some seriousness and a last shred of dignity. Even "Lyme pts." would be better if a short version is needed.

Ann-OH
 

Occasionally, I do mention to newbies here [is that too cute??] that it's Lyme, not Lymes. Drives me nuts too. And the most understandable reason for people should be that it's named after a town named Lyme, not Lymes. [as someone else stated]

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oops!
Lymetutu

 

Oddly enough when I went for my picc line placement only 3 weeks after being diagnosed. I heard the Dr. in radiology say Lymes..This hospital has done at least a couple hundred Picc lines for my LLMD since it is the only hopital nearby so they have certainly seen many more Lyme patients than just me. I did think it strange that a DR. or radiologist would say it wrong.

More recently the MD that works in my Chiropractors office called it Lymes the first few times I visited her (for Chiro related MD treatment).. She is very up in years, maybe 68+ and sweet as can be and she actually admitted not knowing about this disease but was interested to learn a bit.

I too am guilty of saying "fellow lymies" to refer to Lyme-friends here ...and although I thought it was a warm and friendly term at the time I posted it, I will try to refrain from using this term if some lyme patients are uptight about it..

But I want to go on record as saying that being refered to as Lyme victims somehow does irk me to no end.

Sandi

[This message has been edited by badkitti30043 (edited 29 August 2003).]
 

When AIDS became a popular "word" every teacher's aid wanted to be called teacher's assistants. Being offended at being called aids.

Lyme is a beautiful little town with extemely high taxes and very strict planning codes.

Just because it was diagnosed as coming from there we all know it is everywhere, it could be called Tick disease for all I care.

I am grateful we have the freedom to have a forum were we all can meet, and grateful for everyone who contibutes.

I may be a "newbie" or a "lymie" but I love coming here as long as you don't call it by my name either, Charlie.

 

Now...it could have upset someone, but my sister took it with a sense of humor (as the friend hoped she would) and we all had a great laugh looking at the arrangement.

It is hard to know what to do, what to say sometimes. I would like to know what the "politically" correct word is to refer to those who have lyme disease as I do not want to offend anyone.

Lyme patients? The definition fits. Is that the least offensive to everyone?

Humor makes a bad situation much better.

I dont mind if someone calls me a Lymie or a person with Lyme or Lieme..just as long as they believe that I am sick and I can find a Dr. to treat me. That is all that matters.

Call it the Pinapple Tick Disease for all I care.
 

But I am crazy, sick etc because I have Lyme, not Lyme's. People with Fibromyalgia don't mind being referred to as Fibros, but they may have an urge to correct someone saying Fibro's Disease.

People from Lyme C. might correct someone telling them that they're from Lyme's C. too!
Bottom line, on a hot day,I call it hell.
 

I HATE the word "Lymes".

I just think...what an ignoramus.

It's Like...."Use your Discovery Card" lol

I agree with Rosie on the Borreliosis thingy.

However...I actually instruct people to call me.......Lymie. It's funny.

And NO ONE makes fun of me...since I work about 60 hours a day at my furniture store....and am starting up another business.

PS>>>>>>>>>>>>

I want all of you people that need to raise funds for your local Lyme Group/Cause to read my new subject-Raisng money.

Trout
 

My aim name is Lymie and I like it dammit......

As for me, when I was first diagnosed I went out to a bar with my friends with my cane, both wrist braces on, and I couldn't drink and the bartender asked me why. So I told him....he put up a shot glass on the bar filled with LIME JUICE.

I thought it was pretty cute.........maybe cause he was cute heheheheh

Take Care everyone
Abbie

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You can only see the stars when its the darkest.................

Aol instant messenger name: Lymie711
come chat...learn how http://flash.lymenet.org/ubb/Forum1/HTML/026909.html

[This message has been edited by AAmeri21 (edited 09 August 2004).]
 

I never really get tired of that.

Lymes makes me mad as well.

Trust me , They will know what to call it when 25% of the population has it, and they figure out its spread sexually.

Hope this doesnt sound mean, I just get freaken sick of denial and ignorance.

greg
 

[This message has been edited by lymemomtooo (edited 04 February 2005).]
 

You cant control how other people feel. If something upsets them, let it be. I have seen posts where people have indicated it is lyme and not lymes. I think that is first and foremost in education of this disease.

By the way, my post to LOPA was NOT cruel. If it was, I woudl have been ignorant and not included a smile. It was a joke. Lighten up.

Thats just my opinion.

And its still Lyme to me!

Just because someone says something you may not like as you do not like some correcting the usage of the word LYME as we do not like the use of the word LYMES ( makes for a pretty circular back and forth, mute argument)

don't ever assuem that people arent working their aszes off in the backround looking for cures or searching or doing what they can. THAT was ignorant.

--Annie

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<center>
<a href="http://health.groups.yahoo.com/group/Lyme_Camp/join">

Click to join Lyme_Camp</a>
</center>

``The best way out is always through.'' -Robert Frost
 

They proceeded to tell her there was no Lyme in Oregon, checked for SARS and a few other things and finally came up with a diagnosis!

She was happy to call me and assure me that "they didnt have" what Lish has. The doctor found a difinitave test....the man had Borellosis and needed to be hospitalized with IV antibiotics for the next 6 weeks, followed by 2 months of orals.

So glad they didnt have to deal with Lyme here! LOL
 

All others it's merely a slip of the lip.
 

Just had to post to this one because I thought it to be very funny!!

I refer to us as "LYMIES" and noticed a long while back that my mom did not like that.

I asked her about it and she said she did not know what I was talking about. I copied and pasted it to her and she said that is how she felt at the time. Guess more important things are taking a front row seat in the "erking" department these days, like my g-ma.

Well fellow lymies.......how ya doin?

I find it endering and cute. So, how about that? Later.......

[This message has been edited by lookin4answers (edited 09 August 2004).]
 

Here we are a year later, and I have to say the word "lymes" still irks me

But I like being a Lymie

Best wishes,
~LymeBrat

 

It is OUR disease. We're living it and we are the ones owning it so I think we should rename it. Especially chronic lyme, because that's a whole new species. Let's rename is something really sexy though.

 

Thanks for bringing it to my attention.

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oops!
Lymetutu

 

I would also like to say I come from a part of the country that we "don't have lyme disease". So little is heard of it in this area. It is common to get a tick bite, but you take some antibiotics short term, and it's gone.

My brother had cat scratch fever when we were little. My mom took in some stray kittens when we were cooped up with chicken pox. They took a biopsy of his lymph gland because they thought it was cancer.

He was treated, but neither me or my sister were and we all played with the kittens.

So little is known of viruses or bacterias and little is done to treat.

I am very greatful for this dicussion board and I have learned so much. It gives me confidence that my dr is doing the right thing and I am greatful to have found my dr.

[This message has been edited by Kaykay (edited 06 February 2005).]
 

"Hi I'm H. Seals and I have Lymes Disease."

It makes me see red or should I say green....

It's almost my favorite but my favorite has to be "BUT YOU DON'T LOOK SICK" I love it!!!

Keep keeping on ya'll.......

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Hollywood
 

I had a friend who used to play around with punctuation and call it Masterpieces Theater and talk about hurting my feeling. This still makes me laugh, although I can't always remember why I am laughing.

hopeful123
 

Who cares wether it is called Limes, or lymies, or however they want to pronounce it, let it go.

HONESTLY, I really feel that this kind of thing makes us a laughing stock.
I mean, if one has cancer, the person who has cancer does not care how the Dr pronouncues it.

When lyme gets around, it will be called the right thing, as more Dr's are aware of this, they will call it the right name.

I know when we are sick, little things get to us, but I HOPE you dont say this to a DR when you are getting treatment, because
it is like YOU know it all and how to prounoune it.

POSSIBLY if we arent that nit picky about this name, we will be taken more seriously.

Some do have OCD with lyme, so maybe these people get bothered by the name.
and maybe because we are so short tempered from loosing many of our lives, the fullness of them, little things bother them.

I want to get better, I dont care what they call it.

Trish
 

quote:

---

Originally posted by Lymied:
Trish I think you hit on something here with the whole Lyme - Lymes debate...I think the fact people call it Lyme's is a constant reminder of how few people understand it and this reality is a sad one when you are so sick with it...it is this lack of understanding that leaves chronic lyme sufferers feeling isolated and alone...I shouldn't speak for everyone but that I think is why I can't stand the term "Lymes"...

---

I agree, for what it's worth.

------------------
oops!
Lymetutu

 

The correct name and toxonomy is Bacteria; Spirochaetes; Spirochaetes (class); Spirochaetales; Spirochaetaceae; Borrelia. Borrelia burgdorferi.

[This message has been edited by Kara Tyson (edited 19 February 2005).]
 

quote:

---

Originally posted by pattiecake:
Like when people say Wal Marts.
pattiecake

---

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oops!
Lymetutu

 

Michael
 

Actually, it's more than irking, it's frightening to think that ignorance on the medical communities' part has lasted this long!

We fight for diagnosis, for proper treatment,for understanding etc. so this comes as no surprise..
 

Health said:

I believe that if were are this picky
about it being called the right thing,
that is WHY we are not going to be taken
seriously. Who cares wether it is called Limes, or lymies, or however they want to pronounce it, let it go.
HONESTLY, I really feel that this kind of thing makes us a laughing stock.

POSSIBLY if we arent that nit picky about this name, we will be taken more seriously.

lymied said:

Trish I think you hit on something here with the whole Lyme - Lymes debate...I think the fact people call it Lyme's is a constant reminder of how few people understand it and this reality is a sad one when you are so sick with it...it is this lack of understanding that leaves chronic lyme sufferers feeling isolated and alone...I shouldn't speak for everyone but that I think is why I can't stand the term "Lymes"...

I agree whole heartedly with Lymied. I don't think wanting a disease that has devastated my family, being called by it's correct (common ) name is making me, or the lyme community a laughing stock..

Nor do I think it makes doctors or other healthcare officials take us, or the seriousness of this disease less seriously.

In fact, I see it as the total opposite. If we want to get the word out there about Lyme Disease, then we need to use the correct (common) name. Lyme Disease.

To allow professionals to continue to call it "Lymes", is basically allowing them to remain ignorant about Lyme and the seriousness of Lyme.

It is also an injustice to all of us who have spent years trying to get the word out there about Lyme disease and it's dangers...

After all, how can we expect a doctor to become educated about Lyme Disease, if he/she isn't even calling it by the right name??? Yet alone looking up the right name for their research?

In my opinion, if a doctor uses the word "Lymes", it shows me that he is ignorant when it comes to this disease.

And having 2 young children who suffer from Lyme and having Lyme myself, I refuse to put our lives in the hands of a doctor who isn't educated enough about this disease to even call it by it's correct ( common) name!

Just my 2 cents..

~Lymebrat

[This message has been edited by krazykt1 (edited 05 June 2005).]
 

I coulnt agree more.

What if there is a Dr. who is willing to treat Lyme but calls it Lymes.

Are we going to 'hate' him/her for it??

I was always taught that 'hate' is a very strong word and should only be used for major things such as, "I hate it when a child molester goes free", not "I hate it when people mispronounce a word."
 

and my Mom despite the fact I have corrected her three times calls it "Lymes"...

Makes me nuts but makes me all the more determined to educate...
 

I try to be kind or humorus in asking folks to use the correct word.

robi

[This message has been edited by robi (edited 05 June 2005).]
 

In the same respect...if we called Hilter, Hitlers or ****ler....isn't that a sign of disrespect?

This is a mighty foe we face here...and it should out of respect for what it has, is and will be doing to the masses be called by its formal nickname. (Hell in a bug)

That name is;

Lyme.

The name was derived from a single town...

Heck...they don't call the Caribean Islands the Caribeans do they? lol

Trout

PS....Until we educate everyone properly..it is imperative that we get them to call it by its REAL name. Why? This IS an actual indication of the Physician or person level of intelligence in that particular region.

------------------
Now is the time in your life to find the "tiger" within.
Let the claws be bared,
and Lyme BEWARE!!!
Iowa Lyme Disease Assoc.
www.ildf.info

 

The hosp said she has a raging bacterial infection of "unknown origin" Of course she has been on antirejection drugs (steroids). We all know what steroids do to lyme and co infections.

According to her specialists "there is no lyme in BC" One said "lymes is a myth" Should this make me feel confident? It does'nt. So I'm asking for your prayers for Wendy. thanks, kt
 

If we are going to crawl over people for saying Lymes, then we must crawl over others for not saying the correct microbiology taxonomy.

I have a great LLMD and he NEVER calls it Lyme. He calls it from its taxonomy.

Out of all the ourages in the world, this is the least of them.

There could be someone out there who has English as a 2nd language and so they call it Lymes...How dare they not pronounce English properly.

What if a person has a lisp and it sounds like Lymes, but really they are trying to say Lyme...they should know better!? How dare they have a lisp.

I was taken by ambulance and they put down I was blind instead of having Lyme. It was an honest mistake. Big deal. They had probably been working all day.

Someone asked me why they didnt call it the Lemon disease. Big deal. They had never heard of Lyme, CT.

You take ignorance and work with it. But I dont 'hate' lack of correct spelling or pronunciation.

This is silly. There are more important things. Move on. If this is the most insulting thing in your life, G-d Bless you!

Believe it or not, there probably is a deaf Lyme person out there who would LOVE, absolutly LOVE to hear the word Lymes. We should all grateful that we have hearing instead of being insulted by what we hear.

[This message has been edited by Kara Tyson (edited 05 June 2005).]
 

[This message has been edited by krazykt1 (edited 05 June 2005).]