posted
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.
-------------------- OK...I'll play your silly games.
Finding my happy place.
Brenda-Lee Posts: 126 | From Florida | Registered: Aug 2007
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Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
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.
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
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posted
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,
-------------------- ICEY Posts: 468 | From Las Vegas NV | Registered: Jun 2005
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
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 ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
I think it may be more than ego. Seems like there is an agenda for the public to not know what's going on.
Posts: 13171 | From San Francisco | Registered: May 2006
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lymie tony z
Frequent Contributor (1K+ posts)
Member # 5130
posted
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 ]
-------------------- I am not a doctor...opinions expressed are from personal experiences only and should never be viewed as coming from a healthcare provider. zman Posts: 2527 | From safety harbor florida(origin Cleve., Ohio | Registered: Jan 2004
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treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
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.
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
otm
Posts: 314 | From east coast | Registered: Oct 2007
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
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!!!
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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posted
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
Posts: 257 | From Connecticut | Registered: Oct 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
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 ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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Greatcod
Unregistered
posted
The folks at AFLAC seem to have done rather well.
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lymie tony z
Frequent Contributor (1K+ posts)
Member # 5130
posted
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
-------------------- I am not a doctor...opinions expressed are from personal experiences only and should never be viewed as coming from a healthcare provider. zman Posts: 2527 | From safety harbor florida(origin Cleve., Ohio | Registered: Jan 2004
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Peacesoul
Unregistered
posted
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.
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heiwalove
Frequent Contributor (1K+ posts)
Member # 6467
posted
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.
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.
posted
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!!!!
-------------------- Seeking renewed health & vitality. --------------------------------- Do not take anything I say as medical advice - I am NOT a dr! Posts: 830 | From TN | Registered: Aug 2007
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Peacesoul
Unregistered
posted
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!
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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
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Peacesoul
Unregistered
posted
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!
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
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 ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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Peacesoul
Unregistered
posted
Thanks Keebler.....I just want to keep the cause of lyme legit and prove we are real.
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heiwalove
Frequent Contributor (1K+ posts)
Member # 6467
posted
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.'
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?
clairenotes
Frequent Contributor (1K+ posts)
Member # 10392
posted
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
Posts: 1111 | From Colorado | Registered: Oct 2006
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posted
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.
Posts: 44 | From Prairie du Sac | Registered: Jan 2008
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heiwalove
Frequent Contributor (1K+ posts)
Member # 6467
posted
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.
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
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Peacesoul
Unregistered
posted
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.
heiwalove
Frequent Contributor (1K+ posts)
Member # 6467
posted
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.
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
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 ]
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Peacesoul
Unregistered
posted
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
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Peacesoul
Unregistered
posted
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
heiwalove
Frequent Contributor (1K+ posts)
Member # 6467
posted
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.
merrygirl
Frequent Contributor (1K+ posts)
Member # 12041
posted
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
Posts: 3905 | From USA | Registered: May 2007
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posted
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.
Posts: 13171 | From San Francisco | Registered: May 2006
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ByronSBell 2007
Unregistered
posted
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.
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Peacesoul
Unregistered
posted
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.
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merrygirl
Frequent Contributor (1K+ posts)
Member # 12041
posted
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.
Posts: 3905 | From USA | Registered: May 2007
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posted
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.
-------------------- OK...I'll play your silly games.
Finding my happy place.
Brenda-Lee Posts: 126 | From Florida | Registered: Aug 2007
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posted
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.
Posts: 615 | From maryland | Registered: Oct 2007
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Peacesoul
Unregistered
posted
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?
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
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
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
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).
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