posted
I had a gyno appointment this morning and since I've not seen her in over a yr (since my dx's), I told her I was dx with Lupus and Lyme. She asked about the lyme, How I got it, how I knew I had it and she told me two of her other patients mentioned they feared they had lyme.
I explained to her I was lyme literate and can hook her up with my LLMD and all the info I have if she was interested in knowing more.
She was very interested and is going to email me for my LLMD's contact info and for the info I have
They are starting to listen all. Never give up talking to your dr's about this illness.
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
A BIG thumb's up for you!
And you are so very right. Keep educating! At some point they WILL listen.. or risk the consequences. GREAT work peace!
posted
My Ob/Gyn is also starting to listen. Although not as much as the interest your doctor expressed.
I mentioned the lyme to him at my last annual and he said that it was funny I mentioned it because I was the third women this month to bring it up.
I also told him that my lyme passed to my daughter and he was open to treating during the next pregnancy.
Good things are happening...taking awhile...but happening!
Posts: 183 | From Texas | Registered: Nov 2007
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Peacesoul
Unregistered
posted
The more lyme is talked about, the more dr's will listen.
My rheum was laughed at when he spoke to his collegues about my situation and I told him "wait a few more years and they will be coming to you asking for info"
My boyfriend's IDS also laughed at him when he told him I had lyme and that I was lyme literate and wanted to come talk to him. I told my b/f. It's ok, he'll be calling you one day asking for my #
I'm very confident lyme is going to be out in the open in the next 5 years.
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adamm
Unregistered
posted
yeah--I've noticed this too, 3 of the last 4 physicians I saw at least admitted that Lyme is chronic.
The IDSA ship is slowly but steadily sinking.
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cantgiveupyet
Frequent Contributor (1K+ posts)
Member # 8165
posted
my NP at my uro office is now actually saying I am severe due to lyme.
Im glad more gynos are getting on board, since so many lymies have issues in that area.
-------------------- "Say it straight simple and with a smile."
"Thus the task is, not so much to see what no one has seen yet, But to think what nobody has thought yet, About what everybody sees."
-Schopenhauer
pos babs, bart, igenex WB igm/igg Posts: 3156 | From Lyme limbo | Registered: Oct 2005
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lymebytes
Frequent Contributor (1K+ posts)
Member # 11830
posted
This is always awesome to hear. I have come across two Md's recently very interested.
My pain management Md who is also an ID MD was amazed to learn about Igenex and how unreliable testing is...not long after he called me at home and asked me what to do, he believed he had a Lyme patient! Wow, now that is humbling thyself! The man has over 1700 patients.
Another Md I mentioned that I had LD..he said, "THAT is very hard to diagnose" I told him about Igenex and he said he would have to re-evaluate some of his patients now that he realized it really exists here!
Great feeling!!
But oppposite of you..my gyn looked at me like I was crazy and followed up with a letter to me get into "overcoming pain" classes...he was clearly indicating I was nuts.
posted
Just saw my OB-Gyn. She is quite sympathetic about the whole Lyme thing and here's the cool part - she said "I have a feeling most of the chronic fatigue and fibromyalgia cases are going to eventually be diagnosed as Lyme disease" - wow!!
And this week my psychiatrist asked for my LLMD's contact info for one of her other patients - that he has some kind of "post-Lyme" thing and he's still sick and no one believes him. A while back I had given her the ILADS brochure "What your psychiatrist should know about Lyme disease".
We're making progress... slowly but surely. : )
Posts: 227 | From South of the North Pole | Registered: Jan 2007
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posted
My Daughter's Therapist has turned out to have Lyme. I ordered the test kit for her from IgeneX.
Although her Duck says it is negative it isn't. She is still having a bit of a hard time not listening to the ducks. I saw the test. I told her to call IgeneX and talk to Dr Nick Harris.
I told her He will explain what all the bands mean. She will be a great addition to the LL Therapists.
HUGS
-------------------- ICEY Posts: 468 | From Las Vegas NV | Registered: Jun 2005
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Peacesoul
Unregistered
posted
let's please respect all dr's and not call them ducks. That term is so derogatory.
This thread is showing how dr's are trying to open up and learn.
I'm so happy to hear others have had success with their docs. I think with enough knowledge and insight, we can keep spreading the word and helping dr's become lyme literate.
Keep up the good work my lyme soldiers ;-)
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Peacesoul
Unregistered
posted
quote:Originally posted by lymebytes: But oppposite of you..my gyn looked at me like I was crazy and followed up with a letter to me get into "overcoming pain" classes...he was clearly indicating I was nuts.
give it time, your gyno will come around.
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disturbedme
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Member # 12346
posted
Yep! My gyno and dentist seem to be very open about it. My dentist especially. The last time I went in to see him he was asking me questions about it like how I got it, etc., and said, "Wow, you're the second person that's come into my office today saying they had lyme disease." He was very interested.
And my gyno was very open about it. He was also very young, so that could have something to do with it. I hope he stays on the good side!
-------------------- One can never consent to creep when one feels an impulse to soar. ~ Helen Keller
My Lyme Story Posts: 2965 | From Land of Confusion (bitten in KS, moved to PA, now living in MD) | Registered: Jun 2007
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Peacesoul
Unregistered
posted
My dentist was also very interested in lyme. When I went to see her last Jan. I told her my whole story and she asked for more info.
I gave her some of the web sites to check out
We are making progress and it's very exciting
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Tracy9
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posted
Peacesoul, thank you. I cringe every time I see the word "duck."
I don't think it is necessary nor helpful to use this offensive term to refer to any and all doctors who are not LLMDs.
Most doctors just dont' know. We need to educate them, not ridicule them.
It feels like prejudice to me, calling them by that juveniile name. Almost feels like a racial or homophobic type slur, I find it so offensive.
Let's try to wipe that word out of our vocabulary. It makes us look like silly dumb dumbs!!!! Just my opinion, of course.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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bettyg
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posted
yippee, yippee ... they are LISTENING; so happy to read all the positive reports above!!!
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posted
One of the things I have tried to do is to go back and educate the doctors who missed the diagnoses (of me and my daughter). Sometimes this is extremely hard and painful. There are two doctors that I have yet to communicate with because I am still so mad at them.
I have found that it is well received if it is presented in the "I just thought you should know since you live in an endemic area and that 44% of ticks in our area carry co-infections like babeosis, with symptoms similar to lyme and oh by the way, that's what was wrong with my daughter, in case you have any other patients whose lyme doesn't resolve from antibiotics."
I think we should try to communicate constructively with those who misdiagnosed if possible. It may save future patients.
Even my semi-lyme literate regular doctor who does tons of alternative work with autism/diet/lyme etc and gave me 6 months of amox when he dx me, missed my lyme rash calling it ring worm! Lo and behold, a few months after my "ring worm from the gym" I developed terrible light and sound sensitivity and crushing fatigue.
Posts: 524 | From Hudson Valley, NY | Registered: Jul 2007
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Peacesoul
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posted
quote:Originally posted by Tracy9: Peacesoul, thank you. I cringe every time I see the word "duck."
I don't think it is necessary nor helpful to use this offensive term to refer to any and all doctors who are not LLMDs.
Most doctors just dont' know. We need to educate them, not ridicule them.
It feels like prejudice to me, calling them by that juveniile name. Almost feels like a racial or homophobic type slur, I find it so offensive.
Let's try to wipe that word out of our vocabulary. It makes us look like silly dumb dumbs!!!! Just my opinion, of course.
Hi Tracy, very well put. Let's built an alliance with them and not walls. We can only be taken seriously when we conduct ourselves in the appropriate way
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Peacesoul
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posted
CatSkills, the dr's you're mad at, well let them come to their senses. When they hear more about lyme and think of you, they will realize they should have listened.
I bet they come around and maybe even contact you for more info.
Never give up on your docs, they are smarter than we think. Most are just overwhelmed and have huge egos. Patience and respect will break them eventually...haha!
I'm so psyched how everyone here is helping their dr's "get it" Strength in #'s right?
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Hoosiers51
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Member # 15759
posted
Yes, I feel like things are getting better, especially among "normal" people out and about.
A lot of people, when I or my mother have mentioned my Lyme, have said, "Ohhhh, I've heard that is just HORRIBLE! I am so sorry!......(and often something like) I have a friend who's daughter had that and she was down for over a year!"
Which in a way, is reassuring. People are starting to hear of other people with it that have had it in it's chronic form.
I think some people who know me well are starting to understand. I know one guy from high school......who, excuse his language, is very blunt. He said to another friend, "Yeah, she got Lyme. It really *freaked* her up."
The whole point is that people blame it on the Lyme, not anything else! So I take that in a good way! Posts: 4590 | From Midwest | Registered: Jun 2008
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posted
Sorry, some really are DUCKS. These are the abusive, incapable-of-learning doctors. Not everyone can be reached, but keep trying if you think the doctor really does care about patients and wants to help, just needs a bit of educating. Not all doctors apparently went into medicine because they wanted to help people. Some only want to help themselves.
So, educate if you think it would help. Consign the others to the alligator pit.
Sometimes it is more fear of the consequences and controversy that keeps docs from following their consciences. And there definitely are consequences. One of these years when it is safe to practice good medicine, we will find a lot more friendly docs.
Posts: 8430 | From Not available | Registered: Oct 2000
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Peacesoul
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posted
Lou, the term ducks is so infantile. I don't think it's relevent if some dr's are good or bad. If they're unware, mean, cruel and all the other things, then they are stupid humans. Stupid humans are all over this planet.
Ref to docs as ducks shows bitterness. And if dr's are coming here (and they are) reading this site, they, I'm sure, roll their eyes and think "kooks"
We all need to respect one another and if some doc was disrespectful, then so be it. Using some derogatory term in bitterness is not mature.
Not an image we want to give the dr's who are listening.
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Tracy9
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posted
For many, many years I taught all third year medical students at UMass Medical School about domestic violence, as well as most of the residents, interns, and attending physicians. It was required by JCAHO standards.
Every class would end with many doctors shaking their heads sadly, saying, "If only I'd known. I'm sure I've seen SO many battered women, and didn't know how to pick up on the warning signs. I just knew something wasn't right, but I didn't know what it was. Now I'll know."
I would end up almost consoling some of them, as they would recall particular cases in which they fear they may have patched up a woman and sent her home to a dangerous situation without realizing it.
I felt good about making a difference for all those years. The difference was I had a chance to educate hundreds and hundreds of doctors about something they never would have understood otherwise. Every single third year medical student was required to sit through 8 hours of domestic violence education, and all staff had to attend a four hour class. I created, developed, and presented the trainings.
Occasionally I met a doctor who was sarcastic, rude, didn't get it or didn't care. Most of the time, I figured they themselves were probably an abuser.
Other times, I would be out to dinner, and be approached by someone who would say, "Thank you for teaching me so much. I never knew how serious a problem this was, or how important my role was in it."
My own PCP, after I educated him during my annual physical, said to me, "You've changed my practice today."
At an ER visit with my son once, the doctor said to him, "Your Mommy was my teacher in Medical School!"
Though I hadn't been thinking about this when I cringed at the word "duck," I realize it now. I have taught thousands of physicians. Most of them are good hearted, in it for the right reasons, but just can't possibly know everything.
We are fighting against the propaganda that they have been fed. Not only are they unenlightened, they have been told OTHERWISE. Very, very strongly otherwise.
There are ignorant jerks in every walk of life. There are people who don't believe in chronic lyme disease who are doctors, nurses, ministers, priests, attorneys, social workers, therapists, teachers, and more, ALL of whom we may turn to for help.
There is no reason to single out uneducated, misinformed physicians and make a sweeping generalization by calling them "ducks."
By labeling them, we are labeling ourselves as judgemental, closed minded, prejudiced, assumptive, adversarial, and yes, "kooks."
I'm so glad this has come up. I think we need to take the high road and cut that word out of our vocabulary. In my experience, MOST doctors do care. Remember what they are reading in every medical journal they pick up, and in their professional societies.
Feeding them this skewed propaganda was a large scale, calculated, highly organized mission.
For us to look at the success of this mission, and call the products of it some silly, insulting name is far less effective than spending $17 and giving them a copy of "Cure Unknown" would be.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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posted
So well said Tracy, and especially this part:
For us to look at the success of this mission, and call the products of it some silly, insulting name is far less effective than spending $17 and giving them a copy of "Cure Unknown" would be.
This is my tactic - I am going to be delivering a copy of the book along with a copy of the Under Our Skin DVD to several of our doctors, in the hopes that they will be willing to take a second look at what they have been told. It might change things for their future patients, and maybe they will in turn pass it on to another doctor when they are done with it. -karen
Posts: 205 | From northern california | Registered: Apr 2008
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Someone said... and it doesn't matter who... just the thought is bad enough...
"Most doctors just dont' know. We need to educate them, not ridicule them."
I will call them ducks till the day I die because of their evilness.
posted
One of the lessons of Lyme disease is that most conventional doctors in this country are evil. If they were not evil, there would be no controversy.
Years ago, I can accept that most didn't realize the horror of Lyme disease.
Now--they know. They're buzzing with it. They've known for some time. Most commit premeditated murder or attempted murder--knowing full well what Lyme disease can do.
How do you educate a murderer: Oh please don't do that anymore? That is not rational, nor is it compassionate.
We're being kind, calling them ducks.
Never should we forget. A lot of us are getting our meds--my God, we can't turn our backs on those horribly ill children and adults who follow.
Even if Lyme meds become acceptable in conventional medicine, would you want to be prescribed an antibiotic mix by a duck? Horror of horrors.
posted
Well, I was in the "let's educate them camp" and the "doctors are all good human beings, they just need education" camp, until one of them reported me for Munchausen by proxy because my kid, with Lyme, had so many different symptoms. This was 4 years ago, but I am still devastated.
I had tried to continue working in the traditional medical system all those years, so that the doctors would learn about Lyme. I figured that if we all took our kids to Jones and other MD's who were out of the mainstream, the truth about Lyme would never get out. So we intersected a lot with other MD's in the other "camp."
I was never rabid about Lyme advocacy. I was reasonable and moderate, and always willing to look at other causes for the problems our child was having. Not exactly an angry extremist, believe me. But it didn't matter. With this one doctor, all I had to do was mention "Lyme" and he made a call to the state.
Now, we are very careful about doctors to use and even more careful about mentioning Lyme.
I went through 3 months of hell being investigated, before child protection services apologized and wiped the thing off the record. My three kids are all thriving and we are leaders in the community and the schools. Yet, I was accused of neglect, basically because one of my kids had Lyme.
You sound pollyanna-ish, just the way I did 5 years ago, but try to talk to the wrong doctor about Lyme, in your well-intentioned way, and you may end up with a state investigator in your house, the way I did. I will never, ever get over it.
Calling doctors "ducks" creates a healthy mistrust that will protect people from harm. It should not contribute to the polarization that is an obstacle to progress w/research and treatment, but it may help people understand that MD's are not always to be believed or relied upon.
And these issues of trust are not limited to Lyme. I have had experiences with my other kids (asthma, diabetes) in which my kids would have died if I had completely entrusted their care to MD judgement.
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Peacesoul
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posted
I suspect and am probably right on the money when I say, those of you who lash out calling dr's ducks and saying "quack quack" like 10 yr olds are more than likey the people who dr's never listen to or take seriously.
TRUST ME, with these sorts of attitudes, dr's are very well aware of who the respectable patients are and who are not the so resepctable ones are.
Tincup, you can call dr's names until the day you die, but I can asure you, dr's will never take you seriously until the day you die
I actually don't take any info you or Daise says on lymenet seriously because of your behavior here and that's not because I don't think you don't have lyme, it's because I think you both are not credible.
I've encountered some amazing dr's in my 14 yr journey into lyme, some told me it was all in my head, some were legit about their concerns,some even game me meds that harmed me but not one ever looked at me like I was a kook, why, well cause I don't act like a kook.
Anyone who uses the term duck needs to reasses their own spiritual being.
P.S TRACY, you're a class act and it's b/c of folks like you that our cause will be taken seriously. You rock!
If there are any medical professionals that are reading this thread, it would be awesome if you can add your perspective.
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lymednva
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Member # 9098
posted
Peacesoul said:
quote: but not one ever looked at me like I was a kook, why, well cause I don't act like a kook.
You are lucky! I don't act like a kook, yet for years my former PCP rolled his eyes at me every time an infection didn't resolve with one round of amoxicillin.
Even his nurse practitioner knew to look at my chart and see what had and hadn't worked in the past. She always skipped right to the ones that worked.
When my health really went south, I was told over and over it was only anxiety. I was bedridden, but it was anxiety.
I just don't have any respect for the two doctors in this practice. At one time I did for one of them, but lost it when he assured me it was all anxiety. I knew better by then, just hadn't gotten a dx.
-------------------- Lymednva Posts: 2407 | From over the river and through the woods | Registered: Apr 2006
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lymednva
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Member # 9098
posted
Now, back to the topic at hand.
The orthopedist who has been treating my broken shoulder is fairly young and when I mentioned I had Lyme Disease he was quite aware of it. Of course, he went to med school in PA, which might have helped him become more aware of it.
He had no problem consulting with my LLMD regarding anesthesia for my surgery.
-------------------- Lymednva Posts: 2407 | From over the river and through the woods | Registered: Apr 2006
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lymeladyinNY
Frequent Contributor (1K+ posts)
Member # 10235
posted
I can't disagree with you and Tracy9 more, peacesoul. The MAJORITY of mainstream doctors I've seen have treated me worse than dirt.
I didn't act like a "kook" when I presented with my symptoms. I don't call doctors names (to their faces).
I was dying (my LLMD told me this last Monday - that if I hadn't come to her I'd be dead) and all they could do was kick me out of their offices, scream at me to never return, told me I was a "faker" and tried to prescribe risperdal for my "delusions".
One doctor told my family I was mentally ill because I smiled too much at him while explaining my symptoms!
One doctor shrugged her shoulders when I presented with paralysis from the neck down.
Call me a juvenile, but these "doctors" are QUACKS who don't give a d#%& whether we live or die! They don't care what this disease is doing to our lives and to our loved ones.
You can't talk to evil. You can't trust evil. Sure, some docs are ignorant and grateful for information, but many, many more are just covering themselves by denying what they know is true. They don't want to get involved with this thing. The name "duck" is incredibly benign if you ask me.
Sure I'm bitter. I have every right to be. Because of ducks, I've had my life stolen from me. They CHOSE to deny me the care I needed, and it was not ignorance that made them do it. It was self-servience.
Daise and Tincup, you're the greatest.
Tracy9, I don't like the use of "Lymetard". I think I've told you before, I have a son who is severely mentally retarded.
I don't usually get angry on this board, but this thread has riled me up.
- Lymelady
-------------------- I want to be free Posts: 1170 | From Endicott, NY | Registered: Sep 2006
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Good morning to you too Peace...
You said...
"Tincup, you can call dr's names until the day you die, but I can asure you, dr's will never take you seriously until the day you die."
Actually Peace... some doctors do take me seriously and have been for years... the ones that matter to me.
They are the same ones you refer to as "fresh meat".
I prefer using a bit more respect ... so I call them LLMD's.
(Your recent post- "Ok well anyway, I see two options, you either find some fresh meat (new LLMD) or try to convince him about co infections.")
As for the ducks who have allowed this suffering to go on for years and who have killed my family and friends... I actually don't care if they take me seriously or if they are offended if I refer to them as ducks.
If the word duck sounds like a term that a 10 year old would use... it is suppose to. We have children at this site... and the other words I could use to describe them aren't fit for their eyes.
Actually, it was the nicest four-letter word we could come up with to get the point across years ago.
You said...
"I actually don't take any info you or Daise says on lymenet seriously because of your behavior here and that's not because I don't think you don't have lyme, it's because I think you both are not credible."
First... I appreciate you thinking I might have Lyme- that's a relief... and second...
You can brush off all the information I share if you'd like. I have no problem with that. I am sure many do.
But you are only hurting yourself if you do the same with Daise and all the others here that use the term duck.
These fine folks (and they are very credible) are the reason we have LLMD's in the first place. These fine folks have saved many lives by getting others out of the hands of the ducks and getting them to a good doctor (fresh meat).
You suggested those who are "unware, mean, cruel" are actually "stupid humans".
I am not really sure that isn't more of a derogatory term than the word duck... and at least "duck" narrows it down to those in the medical field and not those you describe as being everywhere on the planet.
Others here have recently suggested the ducks are "incompetent, ignorant, fraudulent, mercenary, dishonest".
Do you really prefer "stupid human" and these others terms in place of the word duck? Fine if you do... but I don't expect it to catch on anytime soon.
I also have to wonder why you think it is ok to say cutting things about our "fresh meat" and feel it is ok to make remarks such as, "any LLMD who rx that many abx and does not tell you to take probiotics should not be an LLMD."
But it isn't ok to say "duck" when there is so much pain and suffering going on that these "stupid humans" have caused?
I think Lou summed up how many of us feel... but I will only speak for myself. She said...
"So, educate if you think it would help. Consign the others to the alligator pit."
That is what I do... and on the way to the pit... QUACK, QUACK, QUACK!
I've tried to educate about 1/3 of the conventional ducks I've seen, including before I figured-out that I have Lyme. I made copies of documents, brought books, and made my signs and symptoms very clear by giving typed lists.
Hypothyropidism is not diagnosed nor is it treated properly by most conventional doctors. Quack! I wound-up with severe hypothyroidism because conventional ducks ignored me--dismissed me. This goes on and on for patients.
PCOS--same duck problems as the above. By ignoring us or refusing to prescribe meds for PCOS, most conventional ducks are deliberately causing diabetes in females. We are 6-10% of the female population in the US. And it goes on and on.
When I figured out I had Lyme, I did the same thing. I tried to educate. I made copies (they cost money) of valuable information when I did not have enough to eat.
I typed my concerns when I had touch sensitivity at my fingertips, which I felt directly in my head as pain. But I wanted to educate them for myself and for those who followed.
That is called having a social conscience. Little did I realize that I was a fool, as these were--the nice word--ducks.
Peacesoul? Get the H--- off my back. I've had it with being accused of things that I have not written or done. You are misnamed.
posted
There is a girl who lives on my street who is very mentally unwell with Schizophrenia, she used to see me and yell at me and others on the street. One day, I went to talk to her (she's actually one of my tenants) and tried to reason with her and explain it was not cool to be calling others names and especially not yelling it out.
She would laugh at me and then yell even louder in my face. Another neighbor overheard the conversation I was having with my tenant and came up to me and said "You can't reason with the people who are not mentally sound"
that's it
And Daise, you came into my thread spreading your toxic energy so if you want me to get the "hell of your back", then don't respond to my threads. That way we'll both be safe
Is it just me or does anyone else every notice it's always the same people who come in and disturb a good thread?
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Tracy9
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Member # 7521
posted
Just to clarify, I have also had some very bad experiences with doctors who deliberately ignore Lyme. Please don't think I am saying I think ALL doctors are well meaning but just misinformed.
I am WELL aware that is not the case. My point is simply twofold: First, I think MOST doctors are well meaning and misinformed. Second, I personally don't like the word "duck", for all the aforementioned reasons.
With that said, I do not hold it against anyone who chooses to use the word. I just took the opportunity to share my opinion.
LymeladyinNY, you did mention to me your dislike of the word "Lymetard", and to the best of my knowledge, I have not used it since.
Correction, I may have used it in reference to myself. Please do point out to me where I may be still using it, so I can correct that. I would not knowingly use a term that offended someone in that manner, and I certainly appreciate your taking the time to express your feelings on that to me.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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Boomerang
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Member # 7979
posted
The neurologist we dealt with will always be a Duck.
Posts: 1366 | From Southeast | Registered: Sep 2005
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METALLlC BLUE
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Member # 6628
posted
Well this thread is constructive in that not only is it pointing out a change in physicians attitudes, but it's also helping members here to express their rage and anger. It's also helping others to express their acceptence of those doctors who once disrespected them, or did whatever they did.
In the end, we can feel many things at once. I feel angry at some physicians, and I feel grateful towards others. I have my resentments, even if I sometimes say I don't.
That's the way it is, that's what I observe in others. Progress comes in fits and starts.
When you've lost someone you love to an illness someone dismissed or otherwise didn't try to stop -- how can that be easily accepted?
When we've lost our lives, living in a room with 4 walls, a bed, staring at a ceiling day after day -- I can certainly understand that anger and frustration.
I'm somewhere in between.
I had an experience recently. My G.I. physician retired without even telling me. He had experience with Lyme, and thus was a big part of my "team". I called the office and they told me the news, then I said "So what do I do now? Who do I see when I have such a controversial illness?"
They told me I could see anyone in the office. I'd already seen 4 other doctors in the office, and they all treated me poorly. They either dismissed me, or misdiagnosed me.
I did research in my area, about 150 mile radius, and I couldn't find one competent G.I. specialist who would be able to handle my case. I'm sure there are some out there but I couldn't find them.
So I called the office back and asked who else was in the office and they recommended this guy named Weinstein. I said "Is he a good physician? Would you see him yourself if your life depended on it and you had a controversial illness that most doctors didn't belelieve even existed?"
The girl hesitated, and then she said "He's very good, very very good, you won't be disappointed if you see him."
So I said "I'll sit on it, I'll call you back if I decide to try."
So I called around to some other doctors on my team and expressed what happened and my concerns. My prior G.I. recommended an Oncology surgeon who in the past performed 3 surgeries on me. He wasn't a G.I. specialist, but he knew my case, respected me, and I felt I could trust him.
I asked his opinion and if he could help. He told me "Weinstein is good, he's young, he's laid back compared to the other doctors in that office. You tell him Dr. Arenas supports you and your situation, if he has a problem with that, he can contact me, or you can call me."
So I felt a little safer. I scheduled an appt but told the girl at the office I would only come in under two conditions. The first was that Dr. Weinstein be told by you in advance that I have Chronic Lyme Disease, and that Dr. C -- my prior G.I. in the same office had been treating me. The second was that I wanted Dr. Weinstein to call me directly, prior to ever seeing him for a consult, because I did not want to waste my time and money, nor his time, if he was going to have a problem with prejudice against treating me.
Weinstein, after hearing all this, wanted to see me immediately, which of course tells me that he received my note, becuase my original appt I scheduled was for September. He wanted to see me this week!
So, it's not just about doctors and choices. Because we don't all have the experience I do, I could easily have ended up on the chopping block with a new G.I. doctor.
Even with a diagnosis, it's a hard process building trust and a relationship. So I know it's painful for those who don't know all these things that I learned the hard way.
People are dying, just because they don't know how to handle doctors.
You have to know before you even walk in the door whether that person is going to waste your time, and often the only people standing between you and that doctor are his/her office staff -- so don't be afraid to interrogate them. Don't be afraid to ask for what you want. Your life and those you love depend on this knowledge.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
robi
Frequent Contributor (1K+ posts)
Member # 5547
posted
Truly unbelievable. Why would you have a preference for "stupid human" vs. "duck". It seems to me that "stupid" is much more derogatory terminology. Anyway I am not going to insist you use on or the other or either for that matter. We really have more pressing issues here than what we call those who have harmed us out of omission or ignorance. Education is the key.
Stupid humans are not even capable of being educated ....... maybe a duck can be educated ...... but some refuse.
BTW, TC has done more for this community than you can imagine. You may not agree with her methods or her terminology but she has moved things forward for this community in a big way. You just aren't aware.
I have personally been told by 2 different ILADS LLMD's that I have consulted with that they hold her in high regard. So Peace, you simply do not know what you are saying when you state " Tincup, you can call dr's names until the day you die, but I can asure you, dr's will never take you seriously until the day you die"
"....the term ducks is so infantile." As opposed to the mature term "stupid human?" Oh, please!!!
".... but not one ever looked at me like I was a kook, why, well cause I don't act like a kook." Well, good for you. I am sure you are qualified to determine that those of us that have been disbelieved are all acting like "kooks" (another very mature term). So lets call patients kooks and show great respect for ignorant, unwilling doctors. What a great idea ...... where can I sign up?
"Anyone who uses the term duck needs to reasses their own spiritual being." Hmmm, I think anyone who feels they can tell others they need to reassess their own spiritual being" might perhaps take a look in the mirror.
robi
-------------------- Now, since I put reality on the back burner, my days are jam-packed and fun-filled. ..........lily tomlin as 'trudy' Posts: 2503 | From here | Registered: Apr 2004
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posted
A point made so well in Cure Unknown is that doctors have nothing to lose (other than self-respect) by NOT diagnosing and treating lyme, while they have everything to lose by diagnosing and treating it. Medical boards don't pursue cases of neglect for failing to diagnose lyme. Then factor in insurance cos. and peer ostracization, along with the difficulty in treating this complex disease. Most doctors aren't out to be heroes.
I have horror stories too and it all makes my blood boil, but it wouldn't be the first time in history that otherwise decent people in an evil system have done evil things because it's easier for them. Not an excuse, just reality. (And I agree some of the most powerful ones aren't decent people. I'm talking about the rest.) Let's hope the film, book and all this media attention force some to confront what they're doing to people.
My .02 on 'duck' - I personally don't use it for the same reasons others have given, but if some need it to feel empowered after being violated like this, I say go for it. That's more important. There can be different voices on the board, if someone's going to judge the whole issue of persistent infection by a few posts of patients who need to vent, they're hopeless anyway.
Meanwhile getting back to the first few posts in this thread, it's great to hear that some are well-intentioned and listening!
Posts: 621 | From US | Registered: Jun 2006
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Shosty
Unregistered
posted
Peacesoul, I assure you that I am a "respectable" patient with many, many years of working well with a lot of different doctors.
The point I am trying to make is that it only takes one doctor, who has not even talked with you, but is anti-Lyme, to do you harm. at least, if you have kids.
It may be one in a hundred or one in a thousand doctors, but people need to be very careful about whom in the medical system they try to "educate."
It is great that many people are finding there is progress in the level of awareness and understanding of chronic Lyme, both in the medical system and in the community.
I just hope everyone will be careful. The same persecution that happens to LLMD's, can also happen to parents of kids with Lyme.
If you don't have kids with Lyme, you may not understand this. And it is happening a lot.
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