posted
I just wish I hadn't been dismissed so easily. That I was taken seriously. I wish that when giving a physician information, they wouldn't have just thrown it away with barely a glance. I wish they'd avail themselves of the same information I can get my hands on. I'm talking recent scientific developments here, not just something I cooked up.
I wish they'd have looked for causes of symptoms, instead of just telling me to "live with" them. And for SURE...I wish they hadn't suggested that it was all in my head, as the rheumatologist I recently saw suggested. I thought of everyone here on the boards when he said that...those who were advised to see a psychiatrist. I got the same advice.
There are so many "wishes", and I'm not sure I'm articulating what I really want to say, or what you in fact do need. This is just what came to the immediate mind.
Posts: 624 | From Oklahoma | Registered: Jun 2010
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Most patients know more about themselves and their condition than a doctor does these days. Accept it, listen to them and act accordingly.
Not all studies and all Medical Guidelines are developed in the best interest of the patients that they are suppose to serve. $$ and power corrupts those who can't do, but who sit back in their ivory tower and write about it.
If you don't know, SAY you don't know. Don't dismiss patients because you don't know... and don't toss the patient in a bogus category with a code designed for filing/insurance purposes because you don't know.
Learn what the ROOT of the problems is before ordering treatment.. and if you don't know, don't put the patients in a psych group because YOU don't know. It serves no one well doing so.
Grow a back bone. Stand up for injustice.
Learn some manners. My gosh, how they are lacking in medical offices.
Don't be all full of yourself- you were once a chump with a skinned knee crying on the side of the road, a clutz with a kick me sign on your back, had ripped britches or a fly down in public, or you were someone that others thought was a wuss, a sissy or stupid. Remember that feeling and don't ever let your sick patients experience it.
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Q: What do you wish all of the (regular?) doctors had told you?
That they did not know enough to properly assess my case. But, they did not know that, of course.
next Q: What would I tell the medical colleges and medical associations - and individual doctors?
Go back to school. Get educated. But - this time - do it right and let ILADS design the courses in tick-borne infections. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
In the decade or so that I saw many physicians and specialists, and underwent a plethora of tests and procedures in a quest to discover the cause of my worsening symptoms, and in the face of "normal" test results but also some measurable chronic anomolies, I was able to figure out more things myself than any doctor did. The doctors seemed comfortable abandoning the quest for the cause of my symptoms and quirky test results, prescribing pharmaceuticals to dull the symptoms as an acceptable response.
What I wish is that the doctor(s) had taken my observations seriously and pursued my suggestions. I even hired a special high-priced "conceirge" doctor just to investigate the cause of multiple sites of inflammation, and he just ended up saying there was such a thing as "chronic inflammatory disease" wherein there was no specific cause. NOBODY brought up Lyme disease except me, and after a negative elisa in 2005, it was dismissed as a possible cause thereafter until 2009 when I insisted on getting a WB (in opposition to the recommendation of the ordering physician who, to quell my concerns, indulgently ordered the test) at IgenX that came out positive.
I also wish there was a way to inform the public more successfully about the dangers and symptoms of Lyme disease and coinfections. I didn't know anything about the controversy, testing, symptoms, etc., throughout most of the ordeal and that lack of knowledge hurt me because the medical community, on whom I relied, also did not know. I only learned of it because I stumbled upon an article in a local paper. I'd been a cubscout leader, was an elementary school teacher, and an avid hiker and camper and this information never found its way to me prior to the article.
The other thing I wonder is why, when someone shows multiple symptoms of a coinfection, don't they test for that? Babesiosis and bartonella aren't controversial, are they? I have babesia RNA in my blood cells; there is no question I am infected. I suffered from pronounced air hunger, night sweats, irregular heart beat, and intermittant anemia for years in addition to the inflammatory and pain syndromes. I didn't get tested for any coinfections until after being found positive for Lyme.
Posts: 212 | From San Francisco Bay Area, California | Registered: Aug 2010
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Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
I think one of the biggest things, is instead of downplaying a patient's symptoms because you don't know what is wrong, just be able to say, "I don't know what is wrong."
Posts: 4590 | From Midwest | Registered: Jun 2008
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daisyrlb
Frequent Contributor (1K+ posts)
Member # 15686
posted
For me...I think first and foremost I would like you to tell every doctor you can...not to be a sheeple. Do not let anyone think for you.
From what I can see, it is unfortunate that many people, and especially doctors, have stopped thinking for themselves and swallow hook, line, and sinker the latest reports--be it from the (fill in the blanks) _____, _______, _______, _______, etc--without giving it a first thought.
Simple example: Consider how many times in the last few years the diagram of the "food chart/pyramid" has been redesigned.
When a doctor thinks for himself then common sense has a chance to prevail. In my case, I was bit by a tick in 2003, had text book perfect symptoms, even the bull's eye rash, so I went to the doctor. The doctor took note of my symptoms, saw the bull's eye rash...but since we do not have Lyme Disease in my state...he said that I could not have Lyme Disease. Unfortunately, I was a sheeple back then, and the rest is history.
Second, tell every doctor you can that when he looks at his patient, to imagine that this is his most beloved family member that he is diagnosing and treating...and act accordingly.
sammy
Frequent Contributor (5K+ posts)
Member # 13952
posted
This is not a personal testimony but general observations that may be helpful for any medical professional.
Always be honest. Show genuine empathy. Have a non-judgemental attitude. Take time to listen.
Look at everything yourself (patient exam, labs, imaging studies, etc) before making decisions. When speaking be sure to address the patient not just the family members or other medical staff present in the room. Speak in a manner that is understandable by the patient and family. Take time to answer questions. Write down instructions (ex: take _ medicine 3x daily for 10 days, call if not better, f/u in 2wks...).
Don't gossip, you never know who may be in the elevator with you. Be kind to everyone (other docs, nurses, maintenance, cleaning professionals...) even if they treat you like dog poo. Go out of your way to help others, they will remember and be more likely to help you in times of need.
Be grateful that you are the one providing care and not the patient in need. Remember to take care of yourself too.
Have fun. Each day is new. You never know what you're going to see and learn!
Posts: 5237 | From here | Registered: Nov 2007
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posted
Don't listen to the IDSA. They are lying and they know it.
LISTEN to the patient and take them seriously. Don't write them off as malingering.
My doctors did a good job of listening to me but knew nothing about Lyme. I was either never tested for Lyme (I had never heard of it myself) or the tests came back negative and that was the end of the story.
[no doctor ever said, "I'm testing you for Lyme disease." I have no clue if they did test me or not.]
I had doctors who tried to help me, but without a good test, nothing happens.
It was a miracle I was ever diagnosed. Took 42 yrs to find out what was really wrong with me.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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posted
Telling us - that they don't know. That they still believe us enough to not tell us to just see a shrink. To listen well to patients. Lots of info there.
Attitudewise, to take some time to do their own research. That they can't expect their profession to hand them the answers. To not laugh about us at cocktail parties. To not put down doctors who are willing to go the extra mile for those with complicated health cases.
Posts: 13116 | From San Francisco | Registered: May 2006
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henson2
Frequent Contributor (1K+ posts)
Member # 463
posted
Please try to tell your colleagues that the current testing methods are inaccurate, unreliable.
That a negative ELISA does not mean the end of the story.
That even a negative WB does not rule out infection.
("you" is used generically here to mean doctors, not specifically you, Green).
If I bring in evidence based studies to show you, you don't have to read them (I know you don't have time) - but at least acknowledge that they exist. My doctor seemed to ignore every article I brought in saying he only does evidence based med. These WERE peer reviewed articles in respected journals! I just wanted him to know they existed.
Be open to new ideas and to the idea that doctors don't know everything.
Please, please don't make a doctor's visit a power struggle.
Please don't be dismissive of a patient's symptoms because they don't fit into a "box" of evidence that you learned in medical school. The field is changing, and you can't possibly know all the new research.
Listen. Be human. Allow the patient the authority of their experience. They know their body better than you do.
We don't mind if you tell us you don't know. We will respect you more.
We are not making things up.
Green -- thank you.
Posts: 1066 | From East Coast | Registered: Dec 2000
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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
Tin Cup said it all for me.
-------------------- 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.
momindeep
Frequent Contributor (1K+ posts)
Member # 7618
posted
I second everything revealed here. The story is an old one now, and unfortunately, the last decade or so has shown little improvement in the medical community concerning Lyme.
I have had doctors visibly, physically, shrink when I mentioned I thought my daughter had Lyme...and much to my consternation, those doctors who rejected Lyme immediately suspected psychiatric problems. I must add, I, as her mother was suspected for inducing my daughters illness...what a nightmare.
I do not trust doctors anymore.
I wish that doctors would of had some compassion for my daughter.
I wish they had listened to me...I harbored such immense anger towards certain doctors for many years...they have no idea what they did to my daughter, my family...our lives.
I wish that doctors would hang their egos up at the door...THAT, I think is one of the most destructive elements in this situation.
Thank-you for asking.
Posts: 1512 | From Glenwood City WI | Registered: Jul 2005
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nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
Keep up with what is going on! Although I did not suggest I had lyme diseas, when I described classic symptoms including the tick bite followed by EM rash, every doctor told me I did NOT have it because they had been taught the lyme zones and Montana was not in it.
Meanwhile three years prior to my bite the state epidemiologist recognized a "lyme like" disease in the state caused by the bite of the wood tick.
Four years later, if I mention to a vet or doctor that I have lyme I am told it does not exist here. I tested positive according to CDC standards.
The doctor that agreed to treat me believes that I am the ONLY case in the county! He has never seen anyone else. He eagerly prescribes marijuana to treat pain in his patients but the numb skull has no idea how many people he has sent off with medical marijuana card that need antibiotics.
The fact is the state collected 345 ticks that had bitten people in 2004 and 6 of those people bitten developed an EM rash. Considering only half of those infected get the rash that would mean about one in 29 people bitten by a tick in this state are infected with TBD.
How many thousands of people are misdiagnosed? The science is self evident. Tell your classmates to wake up and smell the coffee.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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posted
I was never taken seriously. Ever. Not by my family (meaning my mom and sisters). Not by my doctors. Just because doctors can't figure out what's wrong, doesn't mean it's all in our head. Just because common blood tests are normal, doesn't mean we're not sick.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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posted
Thank you so much for sharing. The response is overwhelming, really.
I agree the most with the "Listen to your patients" notion. The last appointment I had with my neurologist i said 'ya know what, i'm just going to tell you everything i'm feeling right now'.... listed off a virtual laundry list of symptoms....
she just sat there and said "well that sounds like glaucoma and a referral to an opthalmologist"... she then gave me the number to a psychologist. hmm. yea...
needless to say, that was the last time i saw her.. and i think the last doctor i went to until the one who finally diagnosed me with lyme.
In other news, I would like to share a small bit of excitement
i recently showed UOS to some of my colleagues and professors. there were many people either crying or very angry about the situation. and many had a handful of questions
one of my favortie comments from a colleague was when he mentioned [and i'm paraphrasing here] 'from what it looks like, when we see a patient with ALS or Parkinsons (etc), we should be looking for Lyme as well...'
...med students don't understand why the controversy is even a controversy, so i really dont know where things go wrong???
Thanks again everyone. Truly.
-------------------- ...trying to be the coffee bean, not the egg. Posts: 420 | From East Coast | Registered: Jun 2008
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posted
That is AWESOME, Green!!! You're doing a GREAT job!!! You're right.. WHY is it a controversy!!?
I'm so glad they get the ALS, Parkinson's idea. My dad had Parkinson's and died before I was dxd with Lyme. I'm sure he and my mother had Lyme as well.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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posted
I have something I wish a Dr. hadn't told me. This man is a very respected LLMD who has since wrote a book about lyme. At my first visit he said " You'll be good as new in three months." It is now 7 years later and I still struggle.
Posts: 366 | From Louisville KY. | Registered: Nov 2003
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* LISTENED with open ears to what I was saying without running to the door in 5 minutes for the next patient.
* TAKEN ME SERIOUSLY and even mentioned to me, "Have you been bitten by a tick, have an embedded tick, or a bull's eye rash or a rash of unknown originality?"
* GET OFF THE "IT'S ALL IN YOUR HEAD" mentality, and not recommend us to psychologists/psychiatrists!
* it should have NOT taken 34.5 years to be correct diagnosed with ME having taken the bull by the horns when I heard about the Western blot blood tests by IGeneX lab in California.
* SAY YOU DON'T KNOW; you're human and that's what I want in a dr.
* We want and deserve good BEDSIDE MANNERS.
* Don't be a stuffed shirt and smile as we talk.
* If I wanted a mommy, I'd go to one!
* Be receptive to info I bring in through my responsible internet searches; don't just toss them away saying you use PUBMED articles only!
* Don't tell me I have an illness, lupus or Lyme disease, and walk out the door without giving me any brochures, info, or tell me how we are going to TREAT this!
* If you say, "Let me refer to a colleague, I'll get back to you if they have some ideas in 2 days," then CONNECT with them and GET back to me as you promised!
* Say: we don't know how long it will take for the antibiotics, supplements, or alternative therapies to help you. No two people are alike.
* After Lyme/co-infection diagnosis, give me good reputable sites, NOT IDSA SITES!
* Given me Dr Burrascano's Lyme treatment guidelines.
* How to understand Western blot explanation by Dr C, etc.
* Have written detailed medical notes so they could be used to SUPPORT me for SSDI, disability insurance work claims, to be approved for work payments!
* NO VAGUENESS! Please take that one minute extra to explain physical and mental limitations.
Green, thank you so much for posting this and we look forward to your being one of our future LLMDs in our nationwide LLMD lists!!
So glad you showed UOS to your teachers/colleagues and shared their reactions on our travesty!
Best wishes on your schooling and commitment to be a Lyme ACTIVIST as well as a Lyme/co-infections patient!
Hugs and kisses, BettyG, Iowa Lyme activist www.mdjunction.com, Lyme group leader
Posts: 13116 | From San Francisco | Registered: May 2006
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randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
yeah same here. i just wish the doctors had not dismissed me as a nut...and not been so damn closed minded.
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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...it's weird not seeing her name on the board anymore
hope she and her husband are doing okay
-------------------- ...trying to be the coffee bean, not the egg. Posts: 420 | From East Coast | Registered: Jun 2008
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Carol in PA
Frequent Contributor (5K+ posts)
Member # 5338
posted
quote:Originally posted by daisyrlb: ...when he looks at his patient, to imagine that this is his most beloved family member that he is diagnosing and treating...and act accordingly.
I think when docs look at a patient, they think about all the things they need to do to CYA and avoid a possible law suit.
When they see symptoms that resemble tick borne infection, they think about that REALLY BIG bonus that they will lose if they diagnose Lyme.
(Some insurance companies promise every doc in the practice a huge bonus if they promise not to diagnose and treat Lyme. If one doc strays, then they all lose the bonus.)
And they may think of a colleague who said to them at some point, "Don't get mixed up with Lyme patients. You could lose your license."
(This was overheard by a patient in the Emergency Room.)
Carol
Posts: 6947 | From Lancaster, PA | Registered: Feb 2004
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posted
Well, I was told many things, including the following: (not exact quotes)
"There's something wrong here, I'm putting a team together to try to figure this out." and "Modern medicine just doesn't know everything there is to know about the human body." "You are what we call an 'A-HA', not so good for you, I know (said with much compassion and sympathy), but a mystery for us to figure out."
and "I just don't know" several referrals later "she's not right about that, I want to do some of my own tests." and "fibromyalgia really just means muscle pain, it's not really a diagnosis."
I was never disbelieved. I was never condescended -until I met my first ilads llmd- and I'm not the only one. There are bruised apples in every bushel. I had to mention that because it is even more caustic considering the source of the insult.
But here I am. On the verge of financial collapse and desperately grasping onto a remission.
All those kind and encouraging words I heard have landed me in the same boat.
So perhaps the advice I would give is to receive proper training. Of course that will not happen.
Not when people are coming out of Medical School with hudreds of thousands of dollars of student loan debt to end up working for the gov't for peanuts so we can all receive "free" healthcare.
The future looks bright. Forgive my pessimism, my life sucks right now.
[ 11-19-2010, 09:10 PM: Message edited by: carly ]
Posts: 797 | From New York | Registered: Feb 2008
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lymeladyinNY
Frequent Contributor (1K+ posts)
Member # 10235
posted
I wish the doctors had considered co-infections for me and treated me for them. I think it would have saved me years of suffering.
I wish they would stop saying I have a "history" of Lyme disease. It is a current event!
And I really, really wish they'd stop referring me to psychotherapy! I look like death warmed over and they say I'm NOT sick with any pathogen!
Come ON! Stop lying through your teeth, doctors. Anyone with a brain can see I'm not a well person, and no amount of "talking me out of it" is going to work!
Stop trying to save your own butts, and do what you went to school to do - help your patients! What happened to integrity??
-------------------- I want to be free Posts: 1170 | From Endicott, NY | Registered: Sep 2006
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posted
Its amazing,some of us typed in our systems on line and BAM Lymes pops up!In reality if they would just get to know the patient,and LISTEN.
Its right in front of them,they dont listen or they are just tired of hearing people complain.
Posts: 72 | From illinois/wisconsin | Registered: Sep 2010
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onbam
Unregistered
posted
"Though I may not know for sure, I have to assume you have Lyme Disease and give you a cocktail of antibiotics to take for the next several months. After that you should have semiannual followups. The risk of not doing so is simply unacceptable."
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