Can it happen in this world? Or are they all too scared
of being put out of work by the fascists?
[ 29. January 2008, 06:40 PM: Message edited by: adamm ]
Posted by kbholley (Member # 12938) on :
I tried with several of my past ducks, but their attitude is that they went school to get where they are, so they know more.
Posted by Aniek (Member # 5374) on :
You can usually tell pretty quickly if a doctor is interested in learning.
You have to realize that most doctors are hearing from sources they trust that chronic Lyme does not exist. It is not that they are all bad people, most are actually trying to do the right thing.
Most likely, the doctors that are interested in learning are the ones that have had a personal experience with Lyme (themselves, a close friend or family) or doctors who use some alternative medicine.
Posted by ICEiam (Member # 7519) on :
My DD's MD was a pediatrician and sees a few adults. He is a really good guy. He tried real hard to figure out what was wrong with my dd for years.
I even told him about the tick I took off her back. He said, no Lyme in this part of the country. This was in Portland OR.
She got bit in Idaho. He did 2 ELISA tests on her being the good guy he is. Sent her to every specialist he thought might help and ran every test known to human on her.
I talked to him after she was diagnosed on the phone. I wasn't living in Portland any longer. He was our MD for so many years I wanted to let him know that we finally found out what was wrong with Ashlee.
He was nice, I asked him if we ever came back over there if he would be interested in treating her. He said sure, but that he had reservations about her having Lyme.
Since the ELISA tests he did were negative. One of my dd's friends goes to him now. She thinks she has Lyme. I think she does too. He has tested her..........ELISA.
She told him that we said she needed a Western Blot sent to IgeneX. He did one, but sent it to Mayo, saying they were the best and were accurate.
So, another one bites the dust??? He is a real open guy and easy to talk to. Doesn't even have a GOD attitude. But, as for Lyme, nope, he doesn't get it.
HUGS,
Posted by Keebler (Member # 12673) on :
-
In Oregon a doctor is not allowed to treat beyond nine days for lyme.
A few who have become educated and treated persistent cases have lost their ability to practice here. Some doctors do know more but admit they simply cannot afford to put their careers at risk.
Some doctors care but don't have the time to learn more. That, of course, is to everyone's determent, however, understandable. This is very complex and is truly a sub-specialty if done right.
The position of the Oregon Medical Board to this day is that "lyme does not exist" in the state - or in anyone from anywhere else who may be breathing Oregon air.
If, by some chance, someone has the textbook bulls-eye rash, they will get nine days' of doxycycline. No tests for coinfections. Any health problems beyond that are considered something else - or nothing at all.
The atmosphere is not safe for doctors in Oregon - or in many other states - to disagree with IDSA or to expand their knowledge or their scope of practice in this area of TBI. That is a huge part of the problem. Sad for everyone.
Something has to change within the system. Anytime a news story comes up it always ends with the quote of the IDSA bonzo saying "well, it could not possibly be lyme."
As long as the hospitals advertise with the media there is little chance of truth.
But even when the media tries to do their job and inform people the IDSA position is very powerful here. It is the trump card in what has become power struggle of ego.
-
[ 29. January 2008, 02:50 AM: Message edited by: Keebler ]
Posted by Robin123 (Member # 9197) on :
I think it may be more than ego. Seems like there is an agenda for the public to not know what's going on.
Posted by meg (Member # 22) on :
Nah, a duck is a duck IS a duck. They usually can
be nothing else by their very nature. Now, there
are those Drs who are semi-ducky in persuasion, but
do listen......
They don't earn the name DUCK for nothing!
Posted by lymie tony z (Member # 5130) on :
Hey there Robin.....You"re absolutely correct!
something like the use of antibiotics for,
Systemic Intracellular Bacterial Infections (Mycoplasma,Chlamydia, Borrelia species) in CNS
and Neurodegenerative (MS, ALS) and Behavioral Disorders like ASD(Autistic Spectrum Disorders)
ADD, Asperger Syndrome or Chronic Fatigue and ME Fibromyalgia Syndrome...don't forget our guys
and gals comming home from (sand flea deserts and previous in the woods boot camp training)
with oh, I don't know, Gulf War Illnesses(symdrome) which are probably nothing more(did I say that!)then lyme and coinfectious diseases.
The mainstream medical or "powers that be guys" don't want it known that simple antibiotics just
may cure most of the neuro and cns degenerative diseases they are trying to find "blocking or immunosuppresant)drugs to treat and never cure.
Just think where all that money for research will go when the government finds out we can
cure our Gulf War Vets with antibiotics.....or get rid of ALS or MS with an anti-spirochetal antibiotic....like penicillin in some cases.
not to mention all the others that I mentioned....gee.....sooooo many conditions and diseases with no Known etiology.....HA!
Gee !!! The IDSA PROFESSORS won't be able to pay all the nerds extra cash for using the internet to scare and confuse people!
BUGS BABY.....IT BE DEM BUGS!
Oh Yeah, I definitely have a trainable doctor....that's why I don't call him a duck. My
second visit after the tests came back negative(done thru a hospital lab, don't know if they
sent it out but if they did it probably went to either Labcorp or Quest....notoriously bad for
using the wrong methodology or reagents for lyme disease to ensure a negative test result).
However when I began to tell him about the negatives and why, he asked me what kind of abx worked best for me and he ordered it! BINGO!
Since then, we've gotten along like two peas in a pod, most of the time. He just refers to my illness as a resistant, persistant infection.
We re-evaluate every quarter or so on how I'm doing and what other med we might try next.
Oh my GOD! He, actually listens to me and most times we agree on my next move. He's my llmd in training.
I don't know if he'll treat anyone else though. I have referred a couple folks. They did'nt have
the kind of success I did with him. I won't ask him why. However I think I can figure at least one reason.....
So the powers that be will leave him alone.
That, would be all the ducks needed to do is not tell anyone who he's treating, and why!
SIMPLE....I guess, that's why they're just ducks!
None too bright! zman
[ 29. January 2008, 01:48 PM: Message edited by: lymie tony z ]
Posted by treepatrol (Member # 4117) on :
My PCP was very wary of my llmd but since so many years have gone buy and he has seen such a increase in lyme in our area he is always telling me how many people have been diagnised with lyme over the last 4 years or so. He still wont touch it but he will pass you along to in his mind experts whpo are treating it.
He sez when it comes to lyme I punt he dosent want to treat it because its very complicated at least he knows his limitations.
Posted by Geneal (Member # 10375) on :
To be honest.....no.
Hugs,
Geneal
Posted by onthemend (Member # 13454) on :
No
otm
Posted by CaliforniaLyme (Member # 7136) on :
Yes?? Not someone who was against Lyme, but an uninformed regular local physician!!! He had no idea Lyme was in California and was open to learning!!
He was out jogging in Nisene Mark State park, #1 for Lyme in CA, as he had done for 15 years- and he saw a poster I had put up on the help kiosk in the woods!! It had my phone number/hotline number on it. And he asked me questions for a good half hour/45 minutes and told me where he worked- so I went and dropped off stuff for him- a hot pink gift bag with TONS of Lyme stuff in it!! A new copy of the book Bulls-Eye by Jonathan Edlow, ILADS CDs, the local study on Nisene & other parks- and every kind of pamphlet we have!!!! And he called to say thank you and said he couldn't wait to read everything!!! He was great!!! LATER, someone else saw a partner physician in his group and said that he had known about Lyme & been Lyme friendly & also said he wanted to know more!!!
So the MORAL is- uninformed doctors are betetr targets for Lyme education, NOT IDs & Rheumies who THINK they know things but are simply MIS-informed!!!
Posted by webmeg (Member # 13647) on :
I'll be the rebel here. My regular MD has been very supportive of my Lyme.
Each time I see him I can tell he's done more research. And I feel like he really listens and is learning a lot from me, too. Doesn't discount any symptom.
Gives me abx without an argument (almost 6 months now). I wanted to switch from Doxy to Amoxicillin to see if would help with my ear noise / crackling, did that no problem.
Has offered IV Rocephin which I might do...I'm doing well on orals right now so I'm not ready to go that route.
He's done all this despite my being technically "negative" by IGeneX (31/41 IND, 18+, 66+). And I never saw Mr. Tick either.
So maybe there is one good duck left??
~webmeg
Posted by Keebler (Member # 12673) on :
-
Although I gave a snapshot of how in some states the doctors are not allowed to learn and grow in practice if lyme is part of that, however, in light of a couple good replies,
I know that we have to "meet them where they are" so to speak. It's sort of a Buddhist thing, I think. Rather than to assault, etc. go in with open heart, giving respect, asking for their respect, too.
Some doctors, most doctors (dare I say) are good at heart. If we come in good spirit, there is always a chance of their listening, learning, growing.
Even if a state won't let doctors prescribe more than nine days' for a illness, there may be ways to work through, around, within. This may be becoming local support while someone consults a LLMD. And maybe, down the road, each town will have several LLMDs.
I've tried with a few doctors to demand they learn more. That does not work.
We have to check our damage, our egos, at the door. We have to really settle down, have the very best of literature to share (share being the key term), and then, as hard as it may be, simply back away if they close their door (or their mind). Just be sure to leave the literature. They may just need time.
Human dynamics and their psychological make-up may not let them easily meet us where we are.
We don't have the time or energy to waste on the ones who are determined TBI does not exist. And we don't want to put off those who might want to learn more.
It's like if someone took something from you, rather than confront, say "this seems to be missing. Have you seen it? Maybe I put it somewhere else." It gives them a chance.
Well, an illness took something from us. The medical field has, too.
But rather than say "YOU are stealing my life." Say "my health has serious challenges. I've been reading some and would really appreciate your reading these articles by some doctors with a group called ILADS. Can I come back in a week to talk about this ? It's really important to me."
If they say "no" ask them again to please read it but you understand that they just aren't in the position to work with your right now. Wish them well, and mean it. If we throw temper tantrums- or even show frustration - that is all they will remember. Doctors have been taught that emotional requests or displays equal mental illness.
Just move on. Above all, don't let yourself cry no matter how sick and exhausted you may be. That has ruined many chances and black-marked my medical file.
On the other hand, presenting our "case" in a professional manner has some sort of freaked-out, too. I think you just have to find a doctor who is also a real person. That makes all the difference.
It's truly a matter of heart, I think, that determines their ability to be a good doctor. And, while I caution about emotion, it's best if we, too, just are honest, real and lead with our heart in a respectful manner.
-
I wish the DVDs of the ILADS conferences were like $5. rather than $65. No way can we afford that for ourselves, much less leave a copy with a doctor. I think it often takes personal knowledge of this in a family or a friend to really see. This is unlike anything they ever learned in medical school (for which most are still paying off loans).
-
[ 29. January 2008, 01:47 PM: Message edited by: Keebler ]
Posted by Greatcod (Member # 7002) on :
The folks at AFLAC seem to have done rather well.
Posted by lymie tony z (Member # 5130) on :
OH Brother Keebler...
You've got to be kidding?
I mean......No one goes into a duck and busts their butt right off the bat!
c'mon, it's their attitude when we tell them we have "chronic lyme disease".
The mainstream folks have been warned...we're "PROBLEM PATIENTS" !
Did'nt you get the memo?...lol I mean geez...no amount of kissin or suckin up to them is gonna change their predjudiced minds...
I used to have a whole bunch of stuff in handy little manila envelopes....they won't even open the dang things...
The women in the office always thank me when I come in to pay the final bill....after one appointment...and sometimes not even that!
MD stands for "Murderous Disciples" of the IDSA!
OR maybe they're just cowards.
I guess you would be better off buying a conference tape....you would get info like I did
at the conference this past 19th but just like a tape or recording...
you would'nt be able to ask any questions!
zman
Posted by Peacesoul (Member # 13709) on :
ugh, it's so disrespectful to ref to Dr's as ducks. I can see dr's coming to these sites who seriously want to learn about lyme and read that some people call them "ducks". Ref to dr's as ducks is one of the reasons why the lyme cause will not get respect. Real mature!
And yes my dr's have all listened to me when I told them about lyme. My Rheum knew nothing about lyme and was sure I had lupus. When I went to him telling him I had lyme, he was unsure but willing to do anything to help me and to learn. He reads all my emails and everything I send him on lyme. He truly wants to help like I believe most dr's do.
I think if you have dr's that don't listen, it's more than likley in the approach and not the dr.
Posted by meg (Member # 22) on :
Of course it's disrespectful, It's totally meant to be. Why be PC about it? Adamm, you got it right in the first place.
I never went in to my doctors with an attitude or proceeded to tell them what disease I had.
I did give them all the details of my symptoms and waited for them to be the doctor they should have been.
Ducks are instead very arrogant and will say anything to distract you from thinking you have LD, to the point of complete disrespect.
I hope those who have never met a duck, never have to.
[ 29. January 2008, 07:16 PM: Message edited by: meg ]
Posted by heiwalove (Member # 6467) on :
peacesoul, i disagree wholeheartedly.
you are one of the VERY few lyme patients i have ever heard of who has anything positive to say about non lyme literate doctors. most of us were treated like S*** before finally finding an LLMD - told we were crazy, making it all up to get attention, etc.
i think you need to be a little more respectful of the vast majority of lyme patients' horrible experiences with the mainstream medical community; and a lot more empathetic. please realize how lucky you are and that most of us have horror stories to tell.
Posted by Peacesoul (Member # 13709) on :
quote:Originally posted by meg: Of course it's disrespectful, It's totally meant to be. Why be PC about it? Adamm, you got it right in the first place.
I never went in to my doctors with an attitude or proceeded to tell them what disease I had.
I did give them all the details of my symptoms and waited for them to be the doctor they should have been.
Ducks are instead very arrogant and will say anything to distract you from thinking you have LD, to the point of complete disrespect.
I hope those who have never met a duck, never have to.
Like most people here, I've been through the medical system for over 13 yrs undiagnosed. I was told everything under the sun. I even had some rude dr's. But I have enough respect for their profession to not call them something as infantile as a duck. If the dr is a jerk, then he's a jerk.
geeez, grow the heck up!
Posted by cjnelson (Member # 12928) on :
Dont take it personally guys....if Peace thinks its immature that is ok, I agree though because I too ahve struggled with trying to get the help I needed and didnt.
It wasnt my attitude, even after I had positive test, it was still the same thing.
I think it has to alot more to do with the fact that they DONT WANT TO RISK THIER LIVELIHOOD today than it use too!!!!
Granted many dont have a clue but I belive that many have more of a clue than they want to and they simply go NO WAY! NOT ME!!!
Those that dont have a clue have been misled and dont buy it and they are stuck there....
wading in the same waters they ahve been
comfortable in them
JUST LIKE A DUCK!!!! Posted by Peacesoul (Member # 13709) on :
quote:Originally posted by heiwalove: peacesoul, i disagree wholeheartedly.
you are one of the VERY few lyme patients i have ever heard of who has anything positive to say about non lyme literate doctors. most of us were treated like S*** before finally finding an LLMD - told we were crazy, making it all up to get attention, etc.
i think you need to be a little more respectful of the vast majority of lyme patients' horrible experiences with the mainstream medical community; and a lot more empathetic. please realize how lucky you are and that most of us have horror stories to tell.
Oh please, get over it. I was treated horrible by dr's even when I had something as simple as bronchitis. I didn't call them a name.
Seriously, I've been sick for a LONG time and don't tell me I need to have a litte more respect for those who has bad experiences.
My situation may or may not have had anything to do with luck, but I didn't go into my dr's or ER rooms expecting dr's to know it all.
My LLMD also had lyme. She was a family dr before she got ill. She was told by dr's her illness was all in her head. She's not going around calling her dr's "ducks". Instead she educated the ones who would listen. The one's who didn't, well move on.
Being angry at the medical community is futile and makes you all look like kooks.
If I were a dr and came here to educate myself, I would pass this site. My other lyme site never uses such terms to explain their uneducated dr's. Do you think dr's are God like they are suppose to know everything? If you were a dr and someone came to you with something you never heard of, would you have the time to even check it out?
Really people, this is sad!
Dr's who disrespect you are jerks....plain and simple!
Posted by meg (Member # 22) on :
Not sure it's nicer to call them Jerks over
Ducks, but to each his own.
We here all know what a Duck is, per the links in
my post above.
Posted by heiwalove (Member # 6467) on :
wow peacesoul. your holier-than-thou attitude isn't very becoming on you. you might want to try on something else.
Posted by Peacesoul (Member # 13709) on :
quote:Originally posted by heiwalove: wow peacesoul. your holier-than-thou attitude isn't very becoming on you. you might want to try on something else.
You obviosuly have never read any of my other posts........had you, you would know that comment is far from the truth. You might want to read some of my other posts
Posted by Peacesoul (Member # 13709) on :
quote:Originally posted by meg: Not sure it's nicer to call them Jerks over
Ducks, but to each his own.
We here all know what a Duck is, per the links in
my post above.
NO we all don't know what a duck is. I made a thread the other day asking what it meant.
Yeah let's call rude dr's ducks. It's such a mature way to handle a bad situation. When someone ****es me off, I call them what they are. jerks. Maybe the dr's that diss'ed us are not ducks. Maybe they are WONDERFUL dr's and actually saved other people's lives, but they just did not know what to do for us. Are they "ducks" cause they didn't want to hear us out? Or were they just unkind, busy, scared or just not equipped?! Think about it!
Posted by Keebler (Member # 12673) on :
-
Whoa.... let's not get into a fight here.
the thing is when doctors have damaged us, we can't let that fester and turn to anger.
Somewhere, deep inside of us, we have to know how to let it go and move on, smarter and wiser.
I wouldn't dream of going back to some of the horrible doctors I've seen. I would never go see a member of IDSA unless I knew from others that the doctor has done other research, too.
But, someone fresh to this, doing a little research on a particular doctor, should not walk in with guns drawn.
The anger here may be understood. Still, it is detrimental. It sets up a war. Maybe we didn't start it, but we must rise above it.
We can do that by letting new people know the best way to choose a doctor (SAVELY's article is a good start) . . . let them know of the political climate . . . and HOW TO FIND A GOOD DOCTOR.
The anger here can turn many away. It's very upsetting. Even if just for an exercise, taking the negative and shifting it - to what would be better - might be an interesting experience.
-
[ 02. February 2008, 03:44 PM: Message edited by: Keebler ]
Posted by Peacesoul (Member # 13709) on :
Thanks Keebler.....I just want to keep the cause of lyme legit and prove we are real.
Posted by heiwalove (Member # 6467) on :
this site is supposed to be a safe space for people with lyme. i think we should be allowed to freely express our anger over the inhumane treatment we've endured without being called 'immature.'
Posted by Peacesoul (Member # 13709) on :
quote:Originally posted by heiwalove: this site is supposed to be a safe space for people with lyme. i think we should be allowed to freely express our anger over the inhumane treatment we've endured without being called 'immature.'
Tell me your story. How were you treated inhumanely?
I'm truly curious.
Posted by clairenotes (Member # 10392) on :
Everyone is at different stages with this...
Some of us need to express our emotions and that should be okay, because the frustration and disappointment with the medical community is another issue to deal with which can be as real as any other co-infection... it can take time to work through those feelings.
But it is also true that at some point, it could and probably would be equally good to learn to let go and move on...
There is a fine line.
Claire
Posted by Wisconsin (Member # 14522) on :
Wow, that is some interesting dialouge. I'm agreeing with everybody. There are no words to describe the frustration I've felt after the 48th Dr. has told us there's nothing clinically wrong with my formerly rough-and-tumble son who hasn't been able to get off the couch for months.
We beat our heads against that wall for years, just like everyone else. However, I'm healthy (for now), so I'm thinking all about solutions. If I have even a sliver of a chance of making a difference here, how can it be done?
I think whoever said that the Dr.'s are afraid of jepordizing their livlihoods was right. That fear is definately part of the issue. And, there are varying degrees of ego mixed in there as well. But again, if there is even the smallest possibility that I can improve the climate for my son's sake and other's who come behind him, how can it be done?
Here's what I've decided. I'm relying on the LLMD's for treatment. At the same time, I'm presenting a rational, respectful dialougue with area doctors and in the media.
There's some psychology there. I'm completely aware that the odds of making a difference are so minute, considering the current medical climate. However, if I approach the subject in a respectful manner, I've raised my odds just a small percentage.
And finally, I have the burden of trying to help our son sort through all of this. He's being physically stunted, and I don't want him to be emotionally stunted as well. Anger will cloud his reasoning. For him to be able to tell his painful story from a position of peace and forgiveness will be powerful. Doctors may find themselves listening just a little, instead of engaging in a debate.
Ahhh, feels good to talk about all this stuff I've been thinking about for years. Who else would know or care?
Hope I don't sound like I think I have all the answers. I know that I don't. When your son's life is in the balance you're espcially burdened to try to think it all through so that you can offer him so reasonable explanations.
Posted by heiwalove (Member # 6467) on :
peacesoul, i do not wish to hijack this thread with the details of my story. if you're truly curious, you can find a version of it in one of the links meg posted - the 'alligator pit' one.
Posted by Peacesoul (Member # 13709) on :
quote:Originally posted by heiwalove: peacesoul, i do not wish to hijack this thread with the details of my story. if you're truly curious, you can find a version of it in one of the links meg posted - the 'alligator pit' one.
ok so I read it. So your family commited you. So it's your family's fault and not the dr?! What do you call your family?
From what I read, a therapist was doing her job to the best of her ability and messed up by misdiagnosing you! Is a therapist suppose to know the signs of lyme?
How come you just didn't leave on your own free will and see another dr?!
I don't want to hijack this thread, but it's within the same topic as dr's not understanding lyme.
I'm not trying to belittle your suffering by the way. I'm just trying to understand all this anger
Posted by Peacesoul (Member # 13709) on :
Wisconsin....wonderful post. We need to all be calm in order to get the word out. And don't be surprised how one little voice can reach a whole bunch of people.
Keep up the good work
Posted by heiwalove (Member # 6467) on :
peacesoul, i sent you a pm. i no longer wish to be interrogated about my experience, which was frankly the most traumatic thing that has ever happened to me and resulted in a severe, intractable case of PTSD.
you are not entitled to know the reasons behind my anger.
you have me in tears. i hope you're proud of yourself.
Posted by Keebler (Member # 12673) on :
-
It is true that the attitude/treatment (of not treating) or wrong treatment on the part of doctors has caused many serious wounds, adding to the effects of untreated infections. The scope of the damage is enormous. Serious flaws exist in the medical system.
I thought this thread was about HOW to introduce questions and literature to some doctors who just think lyme / TBI is a simple thing. It seems to have brought up many issues around that.
It is clear that, until the physical symptoms of TBI are cleared, the abuse issues of bad treatment probably won't clear for many ill treated patients. However, for all the deficient doctors, there are other doctors who want to learn more and rise to the need.
We all have to figure out how to best process all the events around this illness and that includes how we've been treated not just by doctors, but by family, coworkers, friends. We appear to be hidden to the world to sort this out on our own for the most part. And when the media does shine some light, it's never the on the whole picture.
Understandably, it may be difficult to trust that new experiences - different people - can be better.
Healing - on all levels - will take time. Some scars may remain but some may well fade.
In the meantime, the best we can do is take as good care ourselves as possible as we move forward - even if inch by inch.
We can still seek - with wisdom - the right people for counsel: some for their medical knowledge; others as family and friends. We know we are lucky if we find that.
We are lucky, too, if we can retain our spirit so that we can be as much a part of the world as possible.
At this site, we also have to know how best to advise those new to this so that they can understand the current atmosphere in order to obtain prompt and thorough treatment while maintaining as healthy an attitude as possible.
This is a public site for the world to see. It's not easy to balance expression with education in this space.
A great deal has been asked of us, our families, and of the true experts in this field.
Anyone who works through this course in TBI certainly should be awarded a few prizes. I hope we all get the main one we all seek: health (and the tools to get to that place).
Take care, everyone.
-
[ 30. January 2008, 02:42 PM: Message edited by: Keebler ]
Posted by Peacesoul (Member # 13709) on :
quote:Originally posted by heiwalove: [Q] peacesoul, i sent you a pm. i no longer wish to be interrogated about my experience, which was frankly the most traumatic thing that has ever happened to me and resulted in a severe, intractable case of PTSD.
you are not entitled to know the reasons behind my anger.
you have me in tears. i hope you're proud of yourself. [/Q]
If I was not entitled, then why direct me to where your story was? If one stranger's post can put you in tears, you give too much of your power away.
I mean this is the kindest of way, I can see your suffering and need help and I truly hope you get it.
Best bet is to avoid me and my posts as to not add to your already unstable condition. And please do not send me anymore unkind pm's
I will say a pray that you find your calm
Posted by Peacesoul (Member # 13709) on :
Keebler, again, great words of wisdom. You're the voice of reason.
I say be kind to yourself and EVERYONE will be kind to you, including Dr's
Bless you :-)
Posted by heiwalove (Member # 6467) on :
peacesoul, i am amazed at your inability, or perhaps refusal, to take responsibility for the hurt your words have caused another person with lyme. yes, i have PTSD - and when it comes to this subject, i have a lot of anger left to deal with, huge gaping wounds still needing to heal - but i'm not in an 'unstable condition.' i'm a survivor of psychiatric abuse, which, as i said, was by far the most traumatic experience of my life - and i've also endured childhood abuse and rape. so when i tell you that the latter was nothing compared to the former, maybe that gives you a small idea of the extent of the trauma experienced.
i'm truly sorry for your inability to access that which is kind and empathetic inside you; for i believe we all, as human beings, possess it.
Posted by merrygirl (Member # 12041) on :
I think that "duck" is a perfectly good term for the right person.
A doctor that simply doesnt know anything is not a duck in my opinion. A doctor who is willing to listen to a patient and hear what they have to say is not a duck.
I will give you an example of a classic duck
I went to see a rheumy who when I told I was seeing a particular LLMD or chronic Lyme, flew into a rage. He screamed at me and told me there was no such thing as chronic Lyme and that my LLMD was a nut and should be stripped of his medical license.
Now please tell me what I did to deserve that?
This "doc" obviously had some personal issues surrounding Chronic Lyme. The majority of doctors I have seen quack really loud!
I always treat others with respect, but when "someone" disrespects me they get called a big fat DUCK! DUCK! DUCK!
My pcp does not think I have chronic Lyme, but he is not a duck. He cares about me and listens and treats me with respect.
Call them what you want, but if it looks like a duck, walks like a duck and sounds like a duck (quack,quack) IT IS PROBABLY a duck.
We are all entitled to our opinions and most of us have a reason and right to be mad
Melissa
Posted by Robin123 (Member # 9197) on :
I think we all have similar feelings about not being heard or respected by doctors for having Lyme disease.
We have a big job on our hands, to keep insisting that they pay attention. I am not quiet in a doctor's office anymore. I answer every statement with info, and then I go talk to their staff too. Lyme is spreading here and everywhere, so no more silence.
Posted by ByronSBell 2007 (Member # 11496) on :
I can't even begin to count how many doctors I have tought about lyme disease in the Memphis, TN area. It was easy because I am friends or somewhat with about 20 differet ones.
Posted by Peacesoul (Member # 13709) on :
quote:Originally posted by merrygirl: [Q] I went to see a rheumy who when I told I was seeing a particular LLMD or chronic Lyme, flew into a rage. He screamed at me and told me there was no such thing as chronic Lyme and that my LLMD was a nut and should be stripped of his medical license.
Now please tell me what I did to deserve that? [/Q]
no, you did not deserve it. No one does! But he sounds more like a jerk. If my mechanic spoke to me like that, I would walk away and not go back and call him a jerk. But we don't care about getting mechanics listening to the lyme msg, but we do care about dr's listening. Keep the term ducks in play and it takes credibilty away from our cause.
Posted by merrygirl (Member # 12041) on :
I understand and respect your opinion.
I was not trying to educate this rheumy, I just wanted treatment! He is a jerk and I walked out and never went back!
I also dont go tto the mechanic and try to teach him all about mufflers either, I shouldn't have to.
Posted by kbholley (Member # 12938) on :
I have already replied to this post, but the reason that I called my past doctors "Ducks", is because they were Quacks.
I had a tick bite with a bulls eye rash, and they refused to acknowledge that I might have lyme disease, because according to them, Lyme Does Not Exist In Florida, or the other phrase, Lyme Disease is uncommon in our area. So, I went untreated for seven years, and seeing many doctors who repeated the same thing.
And I grew up hearing when doctors that don't listen to their patients, or refuse to think outside the box, or act like they are too educated to learn something new, they were called Quacks or Ducks, by parents, family and friends.
So no disrespect was intended to anyone on this site or who visits this site, or who is willing to listen to their patients, because we might know ourselves better then they do.
Posted by roro (Member # 13383) on :
I guess I am lucky, most of my dr's are supportive of me getting treated. my primary, neurologist, pain doctor, and gastro are all supportive of my tx w/ LLMD
I guess because I was so sick and nothing was helping they are just happy that my fever is gone and my blood pressure and heart rate are down, and other symptoms
my primary said his practice refers people to my LLMD when they have lyme, he said something about a patient doing a year of IV.
so he does refer people, he just didn't want to refer me. I had to make the decision. also they are not going to be the ones to prescribe.
my son's dr is not as supportive, but not against it.
a few infectious disease dr's and neurologists were the ones I got the most grief from.
Posted by Peacesoul (Member # 13709) on :
FYI. definition of Quack.
Quackery is a derogatory term used to describe unscientific medical practices. Random House Dictionary describes a "quack" as a "fraudulent or ignorant pretender to medical skill" or "a person who pretends, professionally or publicly, to have skill, knowledge, or qualifications he or she does not possess; a charlatan."[1]
The word "quack" derives from the archaic word "quacksalver," of Dutch origin (spelled kwakzalver in contemporary Dutch), meaning "boaster who applies a salve."[2] The meaning of the German word "quacksalber" is "questionable salesperson (literal translation: quack salver)." In the Middle Ages the word quack meant "shouting". The quacksalvers sold their wares on the market shouting in a loud voice.[3]
"Health fraud" is often used as a synonym for quackery, but this use can be problematic, since quackery can exist without fraud, a word which implies deliberate deception.[4]
Doesn't apply to dr's who ignore lyme or don't believe it or don't want to treat it, does it?
Posted by CaliforniaLyme (Member # 7136) on :
Heather, sorry you are having a hard time, I agree PeaceSouls experience is the minority of those of us with Lyme- and PeaceSoul, I think it has nothing to do with our approach when doctors have their minds made up re Lyme. My take on it. That said, PeaceSoul, I agree with you about the word DUCK, I think it is demeaning and does not help us in furthering The Cause. I agree with that 100%. Take care all, Best wishes, Sarah
Posted by Keebler (Member # 12673) on :
-
Of course, this is a place to vent frustrations and sadness.
However, someone who suggests some ways to change things should not be called a "goodie two shoes" and put down.
If we let our anger fester and project it on doctors whom we've not even met it will let the disease grow in ways not helpful whatsoever.
Recognizing the medical abuse for what it was (sadly, too, still is for many) yet finding our voice again as we go through stages, we have to realize that a new doctor coming to this site to get a sense of who lyme patients are could be very put off, understandably so.
We must look at how our actions and attitude will be perceived.
If we don't shift out of the victim place in some dignified manner, as a group, we may just perpetuate some of the misconceptions about lyme patients. We can't keep going in with guns drawn to places we know don't want us.
Doing research on a particular doctor's practice, asking the local support group members, just as with a job . . . find out if the doctor is one with whom you might want to work. If not, don't go. It's exhausting and can come back to hit us in the face.
Learning from past experiences, we might find a different future if we put our eyes forward and find those interested in learning more (not "being educated" by patients, exactly - it's a fine line in how we project our desire for them to know more).
-
Posted by heiwalove (Member # 6467) on :
keebler, peacesoul was putting down how other people (namely, me) deal with severe abuse by the mainstream medical industry. as though that's her place, as though she has any right to criticize survivors of an abuse she has never endured.
that would be like me telling an iraqi woman who'd just lost her entire family in a bombing to 'stop complaining, everyone dies, i pray you find your calm and let go of your anger.' how ridiculous and condescending and awful would that be?? and yes, i realize my comparison is a bit of a stretch, but i'm trying to get my point across here.
no one has any right to tell another person how to move through their healing/grieving process. i am floored no one but me has called her out on her behavior.
even so, all that said; and despite the severity of my experience (although i know i'm not the only one, i have yet to meet another lymie who was dragged to court while so sick she could barely hold her head up, then locked away for five months in a psych ward because 'doctors' insisted she was crazy, and not physically ill), yes, i have met non-LL doctors who i would never call 'ducks.' because they were kind, gentle, open to learning about my experience and learning about lyme. they are rare, but they do exist.
Posted by heiwalove (Member # 6467) on :
also, i don't think it's our responsibility to make this site palatable to people without lyme who might wander in, doctors or not. i really don't. maybe another site could be set up for that purpose - in fact, i would think the ILADS site or lymeinfo are two places that already do just that.
lymenet flash is for the lyme community. if we can't come here and find support and solace for all we've been through, that is a sad thing indeed.
i personally am not the least bit interested in how others perceive me. admittedly, perhaps that's just my activism stance showing its face here, too. that's like asking me to act 'less gay' so straight people won't be offended. sorry, not interested. not interested at all.
Posted by Peacesoul (Member # 13709) on :
quote:Originally posted by heiwalove: [Q] keebler, peacesoul was putting down how other people (namely, me) deal with severe abuse by the mainstream medical industry. as though that's her place, as though she has any right to criticize survivors of an abuse she has never endured.
that would be like me telling an iraqi woman who'd just lost her entire family in a bombing to 'stop complaining, everyone dies, i pray you find your calm and let go of your anger.' how ridiculous and condescending and awful would that be?? and yes, i realize my comparison is a bit of a stretch, but i'm trying to get my point across here.
no one has any right to tell another person how to move through their healing/grieving process. i am floored no one but me has called her out on her behavior.
[/Q]
Heather, how would you know what my past entails with abuse? You don't! You don't b/c I don't have an excessive need to talk about my trauma. My story would make your head spin. But unlike you, I don't play victim. I've decided to use my energy to heal my life. Lyme is but a small bump in my road and again will use my strength and energy to heal.
No one else has called me out b/c I think silently people agree with me.
Your comparison to an Iraq woman is absurd. We can have healthy/sane debate if you like, if not, I suggest you follow your comments in the above posts and ignore me.
Posted by Peacesoul (Member # 13709) on :
quote:Originally posted by heiwalove: [Q] i personally am not the least bit interested in how others perceive me. [/Q]
If that were true, you would have not send me the PM you did.
Posted by FuzzySlippers (Member # 13658) on :
Undoubtedly, there is much, much suffering in a Lyme patient. The suffering is compounded by the present medical political climate.
Many people are bitter, resentful, and downright livid with the lack of awareness that has been exhibited by doctors concerning Lyme. This lack of awareness has left people with a profound sense of betrayal and abandonment. This is a direct result from dealings with doctors who didn't know about an epidemic which is right under their noses. Perhaps, for reasons unknown to us they didn't WANT to know or deal with the Lyme epidemic.
I think it's interesting to consider that when we pay for the services of a doctor, we are paying for their opinion. One doctor described the term "diagnosis" to me as, "the doctor's best educated guess." This so-called "guess" is made after critical analysis of signs and symptoms, laboratory testing, and patient history. A sobering thought actually, the notion that a diagnosis is merely an educated guess.
The problem is that in this current medical-political climate of peer-reviewed and "group thought," alot of physicians are failing to approach diagnosis using critical thought and analysis. Instead, they tout party lines or guidelines and fall right in line with what they perceive as the current paradigm. To me there often appears to be a lack of intellectual creativity as well.
Put another way, it's tantamount to having an entire field of scientists insist to us today that the Earth is flat.
I don't know that it's any less of a derogatory statement to call an incompetent doctor a jerk then it is to call him a duck. But, we as consumers of medical services and as patients do not need to possess a medical degree in order to make an assessment of medical competence in alot of situations.
Do we need to have a plumbing license in order to know whether the plumber we have hired has fixed a leaking faucet? I do know that one thing a customer will NOT stand for is to continue to hire a plumber and pay him for his services while he's standing in the customer's kitchen (which is full of standing water leaking from a sink faucet), and continues to insist that the faucet is not leaking and there is nothing wrong with it.
We are hiring doctors for their educated opinions and assessments. Unfortunately, a vast majority of the doctors are UNEDUCATED when it comes to Lyme. And I find the lack of Lyme education and awareness to be reprehensible particularly when it comes to doctors in my State where Lyme is on record as being epidemic and hyper-endemic.
I've come to the harsh realization that No One is going to care as passionately about my well being and health as I do. Consequently, I feel as though I have been forced to sort my health puzzle out myself.
Am I angry? You bet I am. Am I bitter? You betcha. Will I stop seeing doctors? No. Unfortunately, I find myself in the unenviable position of needing the services of physicians who are knowledgeable about Lyme. I require medical testing and medication.
But, gone, gone, gone are the days when I would walk into a doctor's office and assume that he knew what he was supposed to know or would be willing and able to recognize and learn about an illness that could be new to him.
Gone, gone, gone are the days when I would relinquish control and power over to another individual (a doctor) and allow him to design my fate by making so many decisions (mistaken decisions in some cases) about my health.
I ask questions now -- lot's of them. I want to understand my doctor's viewpoint, his thinking, his philosophy and, most importantly, I want to know WHY he's making a certain decision and recommending a certain treatment path.
Call me a high maintenance patient. I don't care. I'm paying for the services and opinions and I'm not going to elect to be a non-participant in the process of how to regain my health.
Will I continue to try to share what I've learned with people, including doctors? Probably. I feel really strongly about this issue now that I am experiencing it. But I've got no expectations that my message will be heard. That won't stop me from trying sometimes though!
Just my 2 cents.
Fuzzy
Posted by heiwalove (Member # 6467) on :
peacesoul, i said abuse *by the medical industry - let me be more specific and say abuse by the medical industry because of/related to lyme disease. you just said yourself, here and in another thread in general, that you haven't had much of a problem in that arena. well, lucky you. i'm not trying to say what your history of abuse is like in any other area of your life, because obviously i have no way of knowing that history.
all i said in my pm was that i'd like you to please leave me alone. i felt i was being harassed by you and as i said your words brought me to tears - not because i'm 'giving my power away,' but because i have PTSD (clinically diagnosed) and this subject is still a very sensitive & difficult one for me. i would appreciate it if you'd respect that, but i've come to realize you are incapable of doing so. i'm truly sorry for you.
my comparison is not absurd - a stretch, yes - but you have no right to tell me how to deal with a trauma that you have admitted to never having endured yourself. even if you did have my exact same experience, you would STILL have zero right to preach to me how i should handle it. everyone has their own process, their own pace, their own journey.
i suggest you get off your high horse. you are no better than me or anyone else on this board.
btw, i would like to know your real name, because you are not a 'peaceful soul' in the least and i resent having to type those words every time i wish to address you.
Posted by Peacesoul (Member # 13709) on :
Fuzzy, great post You took your experience and anger and put it to good use by being your own advocate.
Using the term jerk, defines the person's attitude, not their profession.
We expect a lot from dr's when in reality, unless they are researchers, they are people working in a office practicing what they learned in some books.
I've been in the medical system for over 13 yrs and yes was angry that not one dr really could figure it out. But even if they did, testing is faulty and how would they know to have sent blood to a lab called Igenex?
How can we expect dr's to know all this?! If a dr degrades you or belittles you, you get up and walk out of his office and find someone that will listen to you.
Anger is a productive emotion.
Posted by Peacesoul (Member # 13709) on :
quote:Originally posted by heiwalove: [Q] peacesoul, i said abuse *by the medical industry - let me be more specific and say abuse by the medical industry because of/related to lyme disease. you just said yourself, here and in another thread in general, that you haven't had much of a problem in that arena. well, lucky you. i'm not trying to say what your history of abuse is like in any other area of your life, because obviously i have no way of knowing that history.
all i said in my pm was that i'd like you to please leave me alone. i felt i was being harassed by you and as i said your words brought me to tears - not because i'm 'giving my power away,' but because i have PTSD (clinically diagnosed) and this subject is still a very sensitive & difficult one for me. i would appreciate it if you'd respect that, but i've come to realize you are incapable of doing so. i'm truly sorry for you.
my comparison is not absurd - a stretch, yes - but you have no right to tell me how to deal with a trauma that you have admitted to never having endured yourself. even if you did have my exact same experience, you would STILL have zero right to preach to me how i should handle it. everyone has their own process, their own pace, their own journey.
i suggest you get off your high horse. you are no better than me or anyone else on this board.
btw, i would like to know your real name, because you are not a 'peaceful soul' in the least and i resent having to type those words every time i wish to address you. [/Q]
show me where I preached to you about how to handle your experience. And you pm'ed me to which I did not reply and in your pm you said "you're p*ssing me off and I wish you would just leave" Who's harrassing whom? So far you've insulted me a few times so, maybe it's not my soul that needs the peace
I have no high horse, but there is no point in reasoning with a victim
Posted by heiwalove (Member # 6467) on :
peacesoul, this is getting ridiculous. i said 'you are p*ssing me off and i wish you would please leave me alone' or something to that extent. i never said *you should leave. read it again if you must.
and now i am done. trying to get you to take my experience seriously is futile. you seem to have no ability (or perhaps no desire) to be compassionate.
take care.
Posted by lymie tony z (Member # 5130) on :
I do believe this thread was hi-jacked for the expressed purposes of begining and perpetuating an unwinable argument....
Newbies should fall in line and respect what is normal around here and conform or go away.
because my friends for all the good(bad)reasons are referred to as ducks...HERE...not in person!
Why?
Simple If it looks like a duck If it acts like a duck If it quacks like a duck If it treats us like a duck
Chances are..............it's a DUCK!
No matter what!
Don't forget one thing people!
I and or my insurance are the doctors employer! Remember that!
Not arrogant..just fact!
A true "doctor" will always have my respect, until such time, as they lose that respect!
Then of course! They are ducks until they earn a title of something else!
Jerks would'nt be bad either....oh so much more mature than "ducks"...who practice quackery!
Let's see....Jerks practice Jerkery!
Nope sorry! Does'nt fit properly for our purposes!
Can you see the point now!? If not then you just want to argue! So, what's the point!
Which, if you consider the demographics, are most of mainstream medical practitioners...
AND WE KNOW WHY!
If someone else does'nt then they might be considered immature, illread, naive etc whose
opinion should'nt amount to a hill of ticks, around here!
zman
Posted by FuzzySlippers (Member # 13658) on :
quote:Originally posted by lymie tony z: I do believe this thread was hi-jacked for the expressed purposes of begining and perpetuating an unwinable argument....
Newbies should fall in line and respect what is normal around here and conform or go away.
because my friends for all the good(bad)reasons are referred to as ducks...HERE...not in person!
Why?
Simple If it looks like a duck If it acts like a duck If it quacks like a duck If it treats us like a duck
Chances are..............it's a DUCK!
No matter what!
Don't forget one thing people!
I and or my insurance are the doctors employer! Remember that!
Not arrogant..just fact!
A true "doctor" will always have my respect, until such time, as they lose that respect!
Then of course! They are ducks until they earn a title of something else!
Jerks would'nt be bad either....oh so much more mature than "ducks"...who practice quackery!
Let's see....Jerks practice Jerkery!
Nope sorry! Does'nt fit properly for our purposes!
Can you see the point now!? If not then you just want to argue! So, what's the point!
Which, if you consider the demographics, are most of mainstream medical practitioners...
AND WE KNOW WHY!
If someone else does'nt then they might be considered immature, illread, naive etc whose
opinion should'nt amount to a hill of ticks, around here!
zman
Zman,
With particular emphasis to your statement, "Newbies should fall in line and respect what is normal around here and conform or go away." --
As a newbie myself and someone who also posted on this thread -- I will say thank you for such a warm welcome.
I don't know to whom you were referring in the rest of your post, but in the event your opinion was directed to my post, I urge you to read what I wrote again.
Regards, Fuzzy
Posted by clairenotes (Member # 10392) on :
The possibility that this is more economical in nature than anything else as one poster alluded to here, is very real (insurance companies/budgets etc). There may be other reasons also, but until they come to light, this is what I am most inclined to believe. So using the term `duck' is somehow incongruent and does not ring true to the situation for me. But that does not mean that I still don't get upset by the individual stories I hear either, or that I don't remember how frustrated and angry I was when no one could provide answers for my situation and I didn't have even the slightest clue how to understand what I was faced with. So I certainly don't judge those who do use the term.
And there are some here that need the space to process their difficult experiences without judgment. This is what was most helpful for me when having to deal with the bizarre and twisted set of circumstances in my own life. And I think that most psychologists would agree that this is the best medicine.
Letting go, or finding a way in which to integrate or deal with the distressing events so that we can move forward again will come in time, but in a time that cannot be dictated.
Things got out of hand here in a way that I am almost sure was not intended.
Claire
Posted by Peacesoul (Member # 13709) on :
Zman....You're part of the radical bunch. Just because you've been here for a long 4 yrs, doesn't mean the "newbies" need to comform to the radical bunch.
I've seen many of your posts and you have been rude to many people on here.
Does being on a board talking about an illness for four long years make one even more bitter?
Maybe eh!
Posted by heiwalove (Member # 6467) on :
i think (or i hope) that all zman means in this case is that if you're new to lyme disease, then you're also new to lyme politics, so it might do you well to research the lyme controversy and all its severe, deleterious effects (that is, if you haven't already experienced them yourself) before you tell an entire community that their term of choice for 'doctors' who have treated them like crap is 'wrong' and 'rude' and 'immature.'
that's my take on his words, anyway, and if that's what he meant, then i agree.
i don't believe newbies need to 'conform' - i don't think anyone should conform to anything, ever, if they feel it isn't right for them - but i think perhaps they would do well to take a minute and respect the fact that many of us have been at this lyme thing a long time, have been involved in lyme activism for many years, etc, etc. you may not agree with the term 'duck' and that is totally your perogative. but putting down others who feel the need to use that term in this forum only, as a way to vent their anger/frustration to other folks they assume will understand.. well, that is inexcusable, in my opinion.
peace to everyone here.
Posted by NHgirl (Member # 13585) on :
peace - (dictionary.com)
1.the normal, nonwarring condition of a nation, group of nations, or the world.
2. (often initial capital letter) an agreement or treaty between warring or antagonistic nations, groups, etc., to end hostilities and abstain from further fighting or antagonism: the Peace of Ryswick.
3. a state of mutual harmony between people or groups, esp. in personal relations: Try to live in peace with your neighbors.
4. the normal freedom from civil commotion and violence of a community; public order and security: He was arrested for being drunk and disturbing the peace.
5. cessation of or freedom from any strife or dissension.
6. freedom of the mind from annoyance, distraction, anxiety, an obsession, etc.; tranquillity; serenity.
7. a state of tranquillity or serenity: May he rest in peace.
8. a state or condition conducive to, proceeding from, or characterized by tranquillity: the peace of a mountain resort.
9. silence; stillness: The cawing of a crow broke the afternoon's peace.
10. (initial capital letter, italics) a comedy (421 b.c.) by Aristophanes. -interjection 11. (used to express greeting or farewell or to request quietness or silence). -verb (used without object) 12. Obsolete. to be or become silent.
--------------------------- Peace be with us all. That is my prayer tonight.
Posted by Keebler (Member # 12673) on :
-
Is it possible to stop all labels, all name-calling?
Know that some are more tender than others about this.
Some have developed certain strategies to deal with damage.
Some are still smarting. Others can compartmentalize and put the anger aside from time to time - or for exploring a new doctor or a new avenue. Some can't yet.
But - calling anyone names - posters here or doctors there - is counterproductive and toxic. Let's recognize that we are all struggling and let's see where we can go from here.
Just a thought.
-
"All I am saying is Give Peace a Chance" (John Lennon).
-
Posted by tonysgirl (Member # 11202) on :
Although I registered last year around this time, I rarely post here. I find this thread quite appropriate as I had a "good" experience with my doctor today.
I was just taken off antibiotics several weeks ago in preparation for a new spinal tap. Before you say anything else, I know the taps usually don't show anything. My LLMD, Dr. F in NJ seems to know what she is doing, so I placed my trust in her hands. I caught a nasty cold which has turned to Bronchitis over the last few days which sent me in to my PCP. I wasn't happy about going back on meds since I have made it almost the whole month to get the tap.
I haven't seen this doc since last summer. I brought a copy of my spect scan results which show hypoperfusion. Being that I live in the backyard of Yale, mostly all of his Lyme info comes from there, yet he was openminded. He asked me to help him know what signs to look for since they are so broad. He also knows the testing is sketchy at best. He asked me many questions to try to obtain an understanding of this. We talked about my spect scan and he said this clearly shows signs of chronic infection, to which he replied "No doctor could dispute that."
So in regards to calling them ducks, I am in agreement 100% with Peacesoul. Not that I haven't had my share of bad doctors, but carrying around that anger is not doing any good for my health. Nor, is is helping to spread the word to people who legitimately want to learn.
Lastly, I wanted to say that this board has become quite "hostile" over the last year since I first posted. I also noticed that many other legitimate websites that speak of Lyme no longer list it as a link. I can clearly see why. If we want significant dialogue with the medical community, we need to treat them with respect and they to us in return. I am truly sorry about many of the experiences many of the members here have had, but if we want to get better, we need to put that anger aside and use that energy for some positive healing.
Posted by heiwalove (Member # 6467) on :
anger is a necessary step in any healing process. no, it's not healthy to cling to it forever, but if you bypass the anger stage of grieving/dealing with trauma, you can't ever hope to heal. this is pretty basic psychological knowledge.
Posted by kbholley (Member # 12938) on :
I agree
Posted by tonysgirl (Member # 11202) on :
You are right, you can never hope to heal without letting go of the anger. Basic knowledge I am well aware of. I guess I am just in a much better place with myself than you may be right now. I hope you can find the same.
Posted by heiwalove (Member # 6467) on :
i said you can never hope to heal without first EXPERIENCING (and expressing) the anger. i am well aware that letting go of the anger is important as well.
i would appreciate it if you didn't make assumptions about 'where i am with myself.' thanks.
Posted by tonysgirl (Member # 11202) on :
I guess you must still be expressing it now. Let the thread get back to where it was supposed to be and that's educating doctors, thanks.
Posted by Peacesoul (Member # 13709) on :
TonysGirl, good luck with the spinal tap. Also, thanks for seeing my reasoning.
Posted by lymie tony z (Member # 5130) on :
Contrary to some people here...I am not angry,
The use of duck is supremely appropriate over all others, this is why it is used.
If you do not wish to use it FINE! Don't, just do not try to tell me not to use it or why I am using it or when I can use it...
nothing but a bunch of do nothing for anyone else be argue inane idiotic junk....could be a definition of a TROLL as well...but you won't here me calling anyone a troll.....
zman
Posted by sometimesdilly (Member # 9982) on :
back to the original question.
umm.. NO. never have educated a duck, though not from lack of trying. i'm afraid i just made them quack more furiously in self-defense.
dilly
Posted by lymebytes (Member # 11830) on :
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!
Posted by tonysgirl (Member # 11202) on :
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.
Posted by kbholley (Member # 12938) on :
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.
Posted by sometimesdilly (Member # 9982) on :
moderators- are you checking out tonysgirl?
thanks- dilly
Posted by tonysgirl (Member # 11202) on :
Sometimes dilly, no need, this will be my last post here. I should have made that clear before, my bad.
Posted by sometimesdilly (Member # 9982) on :
oh, ok, good enough.
maybe LymeEurope would be more to your liking.
Posted by sometimesdilly (Member # 9982) on :
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
Posted by Keebler (Member # 12673) on :
-
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.
-
Posted by heiwalove (Member # 6467) on :
thanks, dilly. for real. your words mean a lot. i was beginning to think lymenet had gone completely off the deep end.
hugs back.
Posted by heiwalove (Member # 6467) on :
i agree, kbholley. thanks for adding your wisdom & experience to this thread.
Posted by Truthfinder (Member # 8512) on :
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.
Posted by Peacesoul (Member # 13709) on :
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!
Posted by Truthfinder (Member # 8512) on :
For LymeNet 'rules' for posting on this board, please click on the "Privacy Statemetn" icon at the bottom of the page.
Posted by Peacesoul (Member # 13709) on :
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.
:-)
Posted by sometimesdilly (Member # 9982) on :
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 - (else is edited).
[ 02. February 2008, 11:51 AM: Message edited by: sometimesdilly ]
Posted by Peacesoul (Member # 13709) on :
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.
Posted by Peacesoul (Member # 13709) on :
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
I rest my case
Posted by Peacesoul (Member # 13709) on :
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 ?
just curious, are you a grown woman?
Posted by map1131 (Member # 2022) on :
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
Posted by AliG (Member # 9734) on :
WARNING*******WARNING******WARNING*******WARNING
Heads up people! It appears there is another new moon coming.
EVERYONE DUCK & COVER !!!!!!!!
I'm sorry. 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.
As you were..... (or hopefully not as it seems to have become rather unpleasant on this thread)
Feel better people! Posted by sometimesdilly (Member # 9982) on :
ali "duck and cover.."
the pickled-dill nut
Posted by sometimesdilly (Member # 9982) on :
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
Posted by AliG (Member # 9734) on :
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.
Posted by Peacesoul (Member # 13709) on :
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........
Posted by AliG (Member # 9734) on :
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. Posted by merrygirl (Member # 12041) on :
Everyone is entiled to their opinion.
I think it is time this thread is deleted.
It really is not a productive conversation anymore.
Posted by Peacesoul (Member # 13709) on :
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.
I don't think this thread needs to be deleted, but locked would be better.
Posted by canbravelyme (Member # 9785) on :
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.
Posted by sometimesdilly (Member # 9982) on :
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
[ 02. February 2008, 04:58 PM: Message edited by: sometimesdilly ]
Posted by heiwalove (Member # 6467) on :
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. Posted by canbravelyme (Member # 9785) on :
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.
Posted by sometimesdilly (Member # 9982) on :
oh Heiwa,
your balanced and constructive post has shamed me back to good behavior-- thank you.
dilly
Posted by sometimesdilly (Member # 9982) on :
can--
actually, when people in the US disagree we often just shoot each other.
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
Posted by AliG (Member # 9734) on :
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 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". (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.
Posted by heiwalove (Member # 6467) on :
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. Posted by heiwalove (Member # 6467) on :
aww, no problem dilly. you're sweet. Posted by TerryK (Member # 8552) on :
Truthfinder, Great idea!! Along those lines, this might be helpful.
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
Posted by Truthfinder (Member # 8512) on :
***'' actually, when people in the US disagree we often just shoot each other. ``***
Yeah, but we're really pretty selective as individuals, and for the most part we only shoot those people who really deserve it. Posted by map1131 (Member # 2022) on :
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
Posted by Truthfinder (Member # 8512) on :
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. Posted by Peacesoul (Member # 13709) on :
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
![[lol]](graemlins/lol.gif)
Not sure it's nicer to call them Jerks over![[loco]](graemlins/loco.gif)
![[Wink]](wink.gif)
![[Smile]](smile.gif)
My regular MD has been very supportive of my Lyme.![[Mad]](mad.gif)
![[group hug]](graemlins/grouphug.gif)
![[bonk]](graemlins/bonk.gif)
![[hi]](graemlins/hi.gif)
- (else is edited).![[Big Grin]](biggrin.gif)
![[Eek!]](eek.gif)
![[Frown]](frown.gif)
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. ![[shake]](graemlins/shake.gif)
as it seems to have become rather unpleasant on this thread)![[kiss]](graemlins/kissing.gif)
the pickled-dill nut
![[Roll Eyes]](rolleyes.gif)
![[cussing]](graemlins/cussing.gif)
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".