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» LymeNet Flash » Questions and Discussion » Medical Questions » Has anyone successfully educated a non-LL doc? (Page 2)

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Author Topic: Has anyone successfully educated a non-LL doc?
lymebytes
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Yes, I have educated an ID MD and he has called me several times personally for more information.

He has an open mind and even said, "We as doctor's cannot pretend to know everything, we simply don't, I would love to learn about Lyme".

Miracle - YES!

--------------------
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tonysgirl
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This is why the public doesn't believe us. It's because of crap like this. I guess LYMENUTS is a superb appropriate word for this board.

PS Don't bother trying to tell me as a NEWBIE what I can and can't say. Trolls come along often, but I am not one of them. It's people like Peacesoul and myself that need to do some activism and get this show on the road with some proof of validity. No one in the real world would look at this board and believe it not to be filled by people who are in dire need of medical/mental help. Not because of Lyme either, but because they have nothing better than to hijack posts and complain and rag all day long! How do you people survive if you don't work! How can you read this board day in and day out, be real. How do you deal and post this garbage all day?? I don't get it. What I am trying to say is, there is no legitimacy to this board anymore and that's a shame. Especially for people like California Lyme who sincerely try to help. She needs to spend her time and effort where it is needed most, with people who want to get better and actually change the climate towards Lyme disease.

Lastly, please don't tell me to break up my post for neuro lymies, I AM a neuro lymie and have no problem reading it.

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kbholley
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Tonysgirl -

The reason people do not believe in lyme is not because of the use of the word "Duck" - it is because of the lack of knowledge on the subject, and in the medical community there are "Doctors" who refuse to acknowledge that Lyme does exist and its real.

I grew up around parents who used the terms "Ducks and Quacks" for doctors who refused to listen to their patients, and my dad referred to Mechanic's as Grease Monkeys - and he was a mechanic.

So, the use of words weither its Jerk, Duck or Quack - is a personal choice or peronal opinion. And the "Doctors" who do not believe in lyme or its existance would not be on this board reading any of it. Because it goes against their educational beliefs.

So, to say, and I quote "This is why the public doesn't believe us. It's because of crap like this. I guess LYMENUTS is a superb appropriate word for this board." Is YOUR personal opinion.

People will believe in lyme if they knew more about it, when was the last time you seen a commercial for Lyme Disease, or any public announcement for it. And the only reason anyone searches for Lyme disease on the internet is because they know someone who has it or suspect that they have it themselves and are searching for answers.

I have changed several doctors, because of the lack of knowledge and their willingness to not hear what I am saying about myself and the disease that I am fighting. No, I never went in with an attitude, or angry at them and ready for battle.

I have brought in books and web print outs and was told, we do not have lyme in our area, and if we do - its very uncommon.

--------------------
OK...I'll play your silly games.

Finding my happy place.

Brenda-Lee

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sometimesdilly
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moderators- are you checking out tonysgirl?

thanks- dilly

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tonysgirl
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Sometimes dilly, no need, this will be my last post here. I should have made that clear before, my bad.
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sometimesdilly
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oh, ok, good enough.

maybe LymeEurope would be more to your liking.

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sometimesdilly
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yuck. just read more of this thread.

"Peace" strikes again, I see.

Heiwa, please don't listen to instigation, and don't feel a need to explain a dang thing.

Nothing good or in good faith is being offered
here, just poison.

Trust your gut-- hugs, dilly

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Keebler
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-

tonysgirl, you said (quote) "Lastly, please don't tell me to break up my post for neuro lymies, I AM a neuro lymie and have no problem reading it." (end quote)

-

I'm confused. But I could only read that last line of your post so I might have this out of context.


Many of us with neuro lyme have lots of vision trouble and vertigo. Maybe some don't. But many of us cannot read more than two or three sentences without a line - or two - of white space. It's just a big patch of grey and makes vertigo just swirl.


It's also easier for everyone to read when it's broken up a bit. Just less stressful on the eyes - which have to fight just to handle the light and flickering of the screen anyway.


It would be ever so nice if you might reconsider your formatting for future posts if you want all of us to read it and be able to offer suggestions to questions you may ask.


thanks.


-

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heiwalove
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thanks, dilly. for real. your words mean a lot. i was beginning to think lymenet had gone completely off the deep end.

hugs back.

--------------------
http://www.myspace.com/violinexplosion

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heiwalove
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i agree, kbholley. thanks for adding your wisdom & experience to this thread.

--------------------
http://www.myspace.com/violinexplosion

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Truthfinder
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When it comes to educating docs who don't know much about Lyme, who believe that ``we don't have Lyme here'', or who believe the IDSA guidelines, I've found one way to get them to think.....

I talked to 2 of the 3 veterinarians in this area and found out that they find Lyme and other TBDs in dogs that have never been out of the area, and that they are treating them with several rounds of doxy (or other meds), as necessary.......

So, when I get the standard answers from a doc that is `misinformed', then I just mention what I found out from local veterinarians and let them ponder THAT for awhile. I think docs tend to pay more attention to their `peers' than their patients. If they are interested, they can always call up a local vet and find out for themselves. If they are not interested, at least I know I've placed a rather large `seed of doubt' in their minds about what they THINK they know.

I'll refrain from commenting on the other issues being discussed here. Opinions have been voiced and now I think readers can determine for themselves what to take away from the discussion.

--------------------
Tracy
.... Prayers for the Lyme Community - every day at 6 p.m. Pacific Time and 9 p.m. Eastern Time � just take a few moments to say a prayer wherever you are�.

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Peacesoul
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quote:
Originally posted by sometimesdilly:
moderators- are you checking out tonysgirl?

thanks- dilly

What are you, 10 yrs old?!
Mods are you checking out how people like Dilly are making your board seem like a cult!

Seriously GROW UP!

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Truthfinder
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For LymeNet 'rules' for posting on this board, please click on the "Privacy Statemetn" icon at the bottom of the page.

--------------------
Tracy
.... Prayers for the Lyme Community - every day at 6 p.m. Pacific Time and 9 p.m. Eastern Time � just take a few moments to say a prayer wherever you are�.

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Peacesoul
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quote:
Originally posted by tonysgirl:
This is why the public doesn't believe us. It's because of crap like this. I guess LYMENUTS is a superb appropriate word for this board.

PS Don't bother trying to tell me as a NEWBIE what I can and can't say. Trolls come along often, but I am not one of them. It's people like Peacesoul and myself that need to do some activism and get this show on the road with some proof of validity. No one in the real world would look at this board and believe it not to be filled by people who are in dire need of medical/mental help. Not because of Lyme either, but because they have nothing better than to hijack posts and complain and rag all day long! How do you people survive if you don't work! How can you read this board day in and day out, be real. How do you deal and post this garbage all day?? I don't get it. What I am trying to say is, there is no legitimacy to this board anymore and that's a shame. Especially for people like California Lyme who sincerely try to help. She needs to spend her time and effort where it is needed most, with people who want to get better and actually change the climate towards Lyme disease.

Lastly, please don't tell me to break up my post for neuro lymies, I AM a neuro lymie and have no problem reading it.

TGirl, I agree with all that you said here except that you are not going to come here anymore.

Please, no need to leave the board. There are SO MANY geat people here that offer up so much productive knowledge, that the good drown out the bitter hateful bunch.
True that Callyme is a great person with lots to offer. Kudos to Callyme :-)

Calling others derogatory terms like "duck" and "troll" is an expression used when one has a lack of calm.

Just be grateful that lyme has not made you an angry person. It's sad because hardships should bring lessons. Some let pain rot them, some let it enlighten them

You're part of the enlightened group, so stick around and show others this site can be a prosperous educaitonal place.


:-)

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sometimesdilly
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if you're happy and you know it
say QUACK QUACK

(QUACK QUACK!!),

if you're happy and you know it
say QUACK QUACK

(QWACK QWACK!!!

if you're happy and you know it
and your face does really show it,

if you're happy and you know it
say QUACK QUACK

(QUACK QUACK!!!!!)


dilly [hi] - (else is edited).

[ 02. February 2008, 11:51 AM: Message edited by: sometimesdilly ]

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Peacesoul
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Tracy, love your point about Dr's being informed by vets.

I think since lyme is being talked about more, there are more dr's who are willing to listen.

I also guess it depends which area one lives. If a small town dr knows the local vet, he may not turn someone away so quickly, but a big city dr will totally lack the knowledge.

I live in a large city, and when I brought my lyme theory to my GP, she had to take out her medical book to read about it.

I believe everyone fighting lyme are pioneers and need to educated and fight, even at the expense of being labelled as "nuts".
The next generation of lyme patients will be the ones who benefit from it.

For those who are angry at being treated bad, come on, use that energy to motivate you to keep up the "good fight". It's imperative that we be heard.

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Peacesoul
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quote:
Originally posted by sometimesdilly:
if you're happy and you know it
say QUACK QUACK

(QUACK QUACK!!),

if you're happy and you know it
say QUACK QUACK

(QWACK QWACK!!!

if you're happy and you know it
and your face does really show it,

if you're happy and you know it
say QUACK QUACK

(QUACK QUACK!!!!!)


dilly [hi]

I rest my case
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Peacesoul
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quote:
Originally posted by sometimesdilly:
maybe now that you are resting cases, perhaps you could also take a rest from being a super-duper blue meanie ? [Big Grin]

just curious, are you a grown woman?
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map1131
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I have had my eye doctor(new) & my gastro(new)doctor say to me since Dec. "if you had an auto-immune disease, that would explain it".

I've decided both of these doctors are trainable. The gastro is a good friend. He knows me personally and has for 20 yrs.

The eye doc is young and I beleive what he learns from me, he can use to help other patients. Same with my gastro doc. He has many lyme & company patients that he isn't aware that their GI problems are related to vector borne illnesses.

Pam

--------------------
"Never, never, never, never, never give up" Winston Churchill

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AliG
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WARNING*******WARNING******WARNING*******WARNING

Heads up people! It appears there is another new moon coming. [Eek!]

EVERYONE DUCK & COVER [Eek!] !!!!!!!!


I'm sorry. [Frown] I have had no duck luck with conversion as of yet, but if I get a good tact I'll be sure to come back & post it. [Smile]


As you were.....
(or hopefully not [shake] as it seems to have become rather unpleasant on this thread)

Feel better people!
[group hug]
[hi]

--------------------
Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner.

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sometimesdilly
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ali "duck and cover.."

[lol] [lol] [lol]


[kiss] the pickled-dill nut

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sometimesdilly
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back one last time to this fascinating topic.

i don't believe for a second that it matters whatsoever in the real world whether or not any person or every single person with TBD calls some doctors "ducks."

big deal. words, words, words, sound and fury, signifying nothing.

in case it isn't obvious, those on the Other Side don't exactly care what we have to think or say about diddly, including our own health.

are there some well-meaning ducks out there? yeah yeah yeah, yada yada.

pickled dill nut

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AliG
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quote:
Originally posted by sometimesdilly:

are there some well-meaning ducks out there?

Just my opinion-

If they were well meaning, I should think we would not be inclined to call them ducks because they would actually try to understand & help us.


[group hug]
[hi]

--------------------
Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner.

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Peacesoul
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quote:
Originally posted by sometimesdilly:

in case it isn't obvious, those on the Other Side don't exactly care what we have to think or say about diddly, including our own health.

are there some well-meaning ducks out there? yeah yeah yeah, yada yada.

pickled dill nut

If your character on this board is any indication of who you really are, I can't blame dr's for not listening.

Maybe the "quacks" really aren't the dr's after all........

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AliG
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Can we please stop insulting each other here. This board is intended for support, not personal attacks.

Thank you.

Sincerely,
a lyme-sufferer who is extremely sensitive to deliberate infliction of emotional pain by people who are supposed to be trying to help each other.
[Frown]

--------------------
Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner.

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merrygirl
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Everyone is entiled to their opinion.

I think it is time this thread is deleted.

It really is not a productive conversation anymore.

[Roll Eyes]

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Peacesoul
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quote:
Originally posted by merrygirl:
Everyone is entiled to their opinion.

I think it is time this thread is deleted.

It really is not a productive conversation anymore.

[Roll Eyes]

I don't think this thread needs to be deleted, but locked would be better.
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canbravelyme
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First, I agree this post should be deleted. Though the initial subject before the thread was hijacked I felt was valuable interchange.

Secondly and FYI:

I find the Canadian culture such that there is generally a suppression of what might be called, "negative opinion". I find this worse in Ontario; Quebec society the most open minded.

I personally think all opinions are positive, and contribute to the whole. I think that trying to control outcomes is a very dangerous game, and dissenting opinions more often than not are catalysts in finding solutions. We do not know that calling a duck a duck isn't going to be a contributing factor toward a positive change in the future. We do not know that the outcome is necessarily going to be negative.

This attitude of seeming politeness, in actuality is quite aggressive. There is an element of shutting people down here using "politeness" as justification.

I would rather deal with emotions out in the open.

I find there is quite a bit of the former that goes on on the Canadian board, and that is why I come here when I'm looking for info. I'm sure someone will vehemently disagree about my comment, but for example, we've been told that the board is not the place to discuss bad experiences with doctors in Canada who are "treating" Lyme. Even if as a course of personal experience you have reason for concern.

Thank goodness we share information like this here. This KIND of information is why I am recovering today.

Isn't it great that in America, we are encouraged to speak openly about not only our likes, but also respect the importance dissention and questioning? And in the US I always feel more comfortable, because it's easier to address what is out in the open. All this veiled aggression and shutting people down, I believe, is far more aggresive than a cab driver leaving me out on highway 1 because we disagreed about the fare (long story). But I would prefer that anyday, than covert passive aggression.

There are definetely cultural differences.

[group hug] [group hug]

--------------------
For medical advice related to Lyme disease, please see an ILADS physician.

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sometimesdilly
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canlyme- cultural differences, eh? that's interesting; i don't see the passive aggression you mention, though, just plain old fashion bullying.

the better behaved Dilly [Big Grin]

[ 02. February 2008, 04:58 PM: Message edited by: sometimesdilly ]

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heiwalove
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to those who don't think i, and other so-called 'angry' lyme patients, are using our anger productively --

what have you done for lyme activism recently? i've attended IDSA protests, travelled to hartford to support dr. jones, donated money i don't have to both dr. jones' defense and the upcoming open eye pictures film, attended the opening of the columbia lyme center, made & printed out lyme info pamphlets & distributed them to free & low-cost clinics here in nyc, kept an online journal detailing my experiences with lyme which has educated untold numbers of friends & acquaintances & strangers, attempted (and been successful!) in educating openminded non-LL docs, and the list goes on.

i'm pretty sure dilly's list is longer and more extensive than mine. i've met her in person (at a lyme activism event) and she is a kind, beautiful spirit.

i agree with AliG that we all need to be kinder to each other. it hurts me that some people seem to be so intent on inflicting pain on fellow lyme sufferers. we all should be supportive here. we're family, whether we like it or not.

okay, over and out. and heartfelt thanks to everyone who's sent me pm's of kindness and support.

take care everyone. [group hug] [group hug]

--------------------
http://www.myspace.com/violinexplosion

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canbravelyme
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Dilly, this is passive aggression:

"Do NOT use the term DUCKS, it's IMPOLITE!!!"

(which is basically what was stated)

Somewhere in there is, "EVEN if you've been hurt by something of the establishment, DO NOT express this, and if you do, I WILL BULLY YOU, and I have a RIGHT TO because I'm RIGHT in enforcing my MORALITY on you, because: I'm just politely requesting that YOU be polite, so what's your problem?"

There is a lot of agression in a culture that doesn't express it well. I'm not saying yours is perfect. There is no perfect anything.

For another example of the kind of passive aggression, or "veiled" aggression that I speak of, we shall examine a Political example.

In Canada, we also have a RIGHT wing person in power who is AGAINST GAY marriage: which tells you that this person is a bigot, or a populist.

But both yours and our "leaders" tell us they are ONLY defending the family. This way, it sounds like they're doing something polite, rather than perpetuating bigotry.

Now this is MY opinion on GAY marriage, please let's not get into a debate here on that.

Isn't it great that there's an American board where we can VOICE OUR OPINIONS?

I find that truth is found through much mutual disclosure.

Bless this.

--------------------
For medical advice related to Lyme disease, please see an ILADS physician.

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sometimesdilly
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oh Heiwa,

your balanced and constructive post has shamed me back to good behavior-- thank you.

[kiss] dilly

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sometimesdilly
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can--

actually, when people in the US disagree we often just shoot each other. [Big Grin]

seriously, though. i skim over the politeness part of the brand of nastiness you are talking about-- it's just too puny a fig leaf to cover the underlying agenda of hateful attack.

and yes, bigots and unkind folks of every stripe and flavor are best at this kind of lying.

hugs to you, neighbor up north.. dilly

Posts: 2507 | From lost in the maze | Registered: Aug 2006  |  IP: Logged | Report this post to a Moderator
AliG
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I'm sorry, but I have to ask this.

If we can not vent our frustrations with the heaps of frustration & emotional abuse inflicted on us by using words that may be "impolite" yet are not vulgar or obscene on a board designed for support, Where are we to do so?

It would be different to call a [cussing] ignorant and emotionally abusive doctor a duck to it's face. That IMO WOULD be "impolite". It would also be "impolite" to refer to all the caring doctors who post here supporting us as "ducks".

IMO, if everyone here was polite to the people who spew ignorance with authority ALL the time, nothing would ever change & IDSA would reign unchallenged forever.

That's just my opinion, besides "ducks" has fewer letters & is easier to spell than "doctors". [bonk] (LOL)

I haven't actually read what is going on here, so excuse me if my statement here seems ignorant. By any chance was the person complaining about the use of term "duck" a doctor? If so, I could certainly understand the frustration.

I think any doctor who truly understands Lyme and is aware of the way MOST patients are treated by doctors who don't understand it, would understand the hostility expressed by the use of "duck" & realize that it CERTAINLY does not extend to them as most Lyme patients would go to heroic lengths to defend the doctors who actually care about our wellbeing.

--------------------
Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner.

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heiwalove
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that's so interesting canbravelyme. i think you might be right. i'm from MN, which obviously is right next to canada.. and we have this expression called 'minnesota nice.' well, it turns out sometimes (often) 'minnesota nice' is really just passive-aggression in disguise.

i've learned a different way of being and expressing myself since moving to the east coast.

letting anger fester unexpressed is perhaps the most unhealthy thing you can do for both yourself and the person(s) with whom you're upset.. and there's an EPIDEMIC of unexpressed anger in MN, that much is certain.

as a related example -- i've talked to many friends of color who say they actually *prefer the unapologetic bigotry they experience in the south. because at least there they know what they're dealing with, they know whom to avoid. there's just as much racism in the northern states, but culturally it's taboo to express it openly, so it's harder to know who to trust, who's just pretending to be kind, etc.

darn. guess i didn't think about that aspect of living in canada. i've long wanted to move there eventually, because of universal healthcare (yes, i know, not helpful for lyme, but in my opinion quite helpful when it comes to non-lyme-related health problems), legal gay marriage, the fact that canada doesn't usually invade other countries and bomb them into oblivion with no provocation, etc.

guess no place is perfect. thanks again for that perspective. [Smile]

--------------------
http://www.myspace.com/violinexplosion

Posts: 1848 | From seattle, wa | Registered: Nov 2004  |  IP: Logged | Report this post to a Moderator
heiwalove
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aww, no problem dilly. you're sweet. [kiss]

--------------------
http://www.myspace.com/violinexplosion

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TerryK
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Truthfinder,
Great idea!! Along those lines, this might be helpful.

U.S. Canine IDEXX Positive Lyme Results

According to the CDC,
"This study demonstrates how canine serosurveys using the IDEXX 3Dx test can serve as an active surveillance system for potential human Lyme disease risk."
Antibody Testing and Lyme Disease Risk | CDC EID

Terry

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Truthfinder
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***'' actually, when people in the US disagree we often just shoot each other. [Big Grin] ``***

[Big Grin] [Big Grin]

Yeah, but we're really pretty selective as individuals, and for the most part we only shoot those people who really deserve it. [Smile]

--------------------
Tracy
.... Prayers for the Lyme Community - every day at 6 p.m. Pacific Time and 9 p.m. Eastern Time � just take a few moments to say a prayer wherever you are�.

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map1131
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I haven't read this entire thread. Sounds like it wasn't something for me to get into anyway. But I just read the post since I posted my little personal stuff yesterday. And....

Maybe being more polite or correct we could use the term lyme illiterate. That doesn't mean this doc is stupid or incompetant. Just not lyme literate.

Like my gastro friend said "Pam, I'm not a lyme expert". I understood that and told him I didn't expect him to be. But I do want him to learn about this illness and it's complication from me.

Like I said in my earlier post yesterday...he isn't going to learn something new just for me. He must learn about this lyme & company for many patients of his today or anyone that comes to him in the future with a unknown or labeled illness like fibro, MS, chronic fatigue, GI issues, etc etc.

Pam

--------------------
"Never, never, never, never, never give up" Winston Churchill

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Truthfinder
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Wow, Terry - I had no idea that CDC said that about canine testing! Thanks for that info - I'll be sure to use it (if I'm lucky enough to get the opportunity again.)

And this is weird..... your post was NOT there when I posted to Dilly's comment..... and now it is there. This website is getting kinda spooky. [loco]

--------------------
Tracy
.... Prayers for the Lyme Community - every day at 6 p.m. Pacific Time and 9 p.m. Eastern Time � just take a few moments to say a prayer wherever you are�.

Posts: 2966 | From Colorado | Registered: Dec 2005  |  IP: Logged | Report this post to a Moderator
Peacesoul
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Heather, I've had given some thought to our back and forth here.
What I did wrong was trying to get my back up with you. I rarely do that.
This thread just got my back up. I try to respect even those that may hurt us

I went to check out your myspace page.
I can see that you're an artistic/sensitive person. As I am.
I write poetry, songs and used to paint.
Music has always helped me deal with my emotions.
There is one song I've been listening to that has helped me over my hump of anger and my past with PTSD.

I ask everyone to read and listen to the song.
It will help maybe with some of the anger.
I apologize since I should have not fed the anger but tried to defuse it

Here are the lyrics and see attached youtube link to hear the song.
I hope it brings u the peace it brought me

City And Colour Sensible Heart Lyrics

I get so distracted
By some peoples reactions
That I don't see my own faults
For what they are
For what they are

At times so self destructive
With no intent on moulding
But behind this emotion,
There lies a sensible heart
A sensible heart

See I'm no king
I wear no crown
But desperate times
Seem over now
But still I weaken somehow
It tears me apart
It tears me apart

I hope to learn as time goes by
That I should trust what's deep inside
Burning bright, oh burning bright
My sensible heart
My sensible heart
My sensible heart
My sensible heart


http://www.youtube.com/watch?v=6YFyChVymeY

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savebabe
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Many of my NY docs know the real deal, but are scared to touch this with a 10 foot pole.

They also feel it is to much work and it is easy to prescribe poop pills than take on this challenge.

I see so many sick people in my area that are misdiagnosed or ingnored by the medical community that it is criminal.

What happened to docs that want to actually help people instead of buying homes in the hamptons and driving fancy cars?

It stinks. [cussing]

Posts: 1603 | From ny | Registered: Aug 2006  |  IP: Logged | Report this post to a Moderator
heiwalove
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thank you for your apology and the youtube link, peacesoul. i appreciate it.

--------------------
http://www.myspace.com/violinexplosion

Posts: 1848 | From seattle, wa | Registered: Nov 2004  |  IP: Logged | Report this post to a Moderator
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