So here we go: What is the most outrageous thing YOU ever heard come out of a doctor's mouth?
I'm at my "get to know you" visit with my new PCP, hoping for an open mind on my journey to wellness.
I say "I just simply don't believe Lupus is the ONLY cause for these symptoms. I do not test DNA positive for Lupus, the only thing I have is an elevated ANA and that could be caused by many things".
Her response "The only other thing would be AIDS".
Withing 24 hours my HMO had me switched to a new PCP. They were appalled by the incident.
[This message has been edited by Curley911 (edited 12 July 2002).]
What are the odds of you being bitten by a tick that has Lyme.....
Duh I Dunno, I only spent every waking moment of my life MTN Biking, and Rock Climbing in the woods of Northeastern P.A. for the last 10 freakin years.
I should have said...
The odds of me catching LYME are better than the odds that you would be able to diagnose it if I did....
May The Force Be With You....
Obi Wan
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Yeah right.
"I've got your lab work back and everything is fine."
I replied, "If everything is fine, why can't I get out of bed?"
I was so furious I threw the sample of antidepressants he gave me on his desk and walked out. Not that I didn't need them..but can you believe he said that????
(I was 39 at the time.)
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Close runner up:
Me: This medication is making me gain weight.
MD: Medications don't cause weight gain. Eating too much causes weight gain.
Me: But I wasn't having any weight problems before I started taking the medication, and since I started taking it I've gained more than 30 lbs.
MD: If you weren't eating too much you wouldn't be gaining weight. After all, there weren't any fat Jews in Auschwitz.
P.S. I am Jewish.
When my Lyme tests came back positive (several tests from different labs), I told this doc about it. He replied, "We haven't seen a documented case of Lyme in Texas in many years".
When I told him that I had also tested positive for the co-infections babesia and ehrlichia, he made a complete about-face, stating, "Remember, M.S. is still in the differential".
Heaven help us!
P.S. Oh Boola, I hope you hit that doctor!
Later, a wonderful Dr in New Jersey diagnosed Lyme affecting the central nervous system, causing the dementia.
When we got home, I told the local dr about the diagnosis. I wanted to sound knowledgeable, so I used the medical term Neuro-borreliosis. He looked surprised and asked "Where did he come in contact with barillium gas (sp?)"
Floored, I said, "No, tick bite...Lyme disease.."
He stammered, "OH, I knew that, I knew that."
Yeah.....really!! Quack, Quack
I WISH I'd hit that doctor -- with a complaint to the state medical board.
Unfortunately I was too ill at the time to be able to think very clearly.
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Two days prior to the surgery I received a call from a doctor that I had seen to get a
'good physical' before having that surgery.
I was told that I had Lyme.
I cancelled my 2-day-away knee surgery.
Here's the good part...my husband happened to run into my Ortho Surgeon the next day at a local hospital...the surgeon inquired:
"So how did they diagnose that...on a CT?"
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I have a two way tie:
#1: My children's EX-Pediatrician: "Most adults who think they have Lyme actually have something else." This was after he had grilled me about why I felt a need to have my daughter tested when she was exhibiting many symptoms of Lyme and my son and I were already being treated for late stage Lyme....I made the mistake of pointing out that not all Lyme patients present with swelling knees.
#2: My ID duck: "You can't possibly have Lyme, but your bullseye rash sure throws me for a loop."
"you are hypochondriacal"
"you are a healthy young man with psoriasis...that all"
"you cant run a high fever from sinustis"
"small pox vaccines for your children isnt given any more
because the disease does not exist anymore"
"You can have antibiotics for your sinusits
because it is just a virus"...with no
cultures or evidence at all
After my son had monthly vomiting attacks
at age two for eight straight months..."
He gets alot of virus".....turned out to
be childhood migranes
Trust me I could go on four hours on this list.
when I went to my regualr doctor the following week he said it couldn't be a lyme tick here in KY. This was in 1989, I guess back then they had signs near the state lines for ticks to jump off the horse vans fro New Jersey. haha.
"you don't have lyme - you just need to stay off the internet"
I responded with "how else can I learn - I don't happen to have a medical library in our home"
He says "Your not suppose to have a medical library - that is why you come to me. I AM THE DOCTOR with the education"
And the next time that he just happened to see us he took my husband aside and said:
"I believe that she believes that she is really sick, and I think that I could help her (wink, wink) I could prescribe just the thing to settle her down"
Unfortunately I cried before I could get out of his office!! Just hate that man knowin he got to me!
He dismissed all my symptoms that were coinciding with my EM rash as due to stress..but then he asked me what was something that I really wanted lately..something that would make me happy..
I thought for a minute...but was really put off by it..didn't know where he was going with it...and I said that I had been wanting to see Les Miserables in SFran..
well, he wrote a med script out to me and told me to give it to my husband...it said something like "take your wife to see Les Mis"...he said that that would make me feel better.
I never felt so humiliated in my life...I remember breaking down in the car telling my husband..he just made me feel like such a hypochondriac..it was absolutely awful and I will never forget it!
meghan
Duck #4
Me "everytime I go to my inlaws I have to sit away from them or across the room because I feel like I'm going to pass out everytime I am there"
Duck replied "In-lawidus"
I gotta admit it was funny but later figured out since the house is so small it had something to with the oxygen.
Duck #20 something
"I don't know what is wrong with you and you are lucky that I ran all these tests. I have a patient that is just like you and she ended up in the hospital because she went blind , now we can treat her. Lets just wait for something to happen."
The alternative practitioners were no better, it was just put in "new age" terms that there was some hidden reason for my illness.... psychological, spiritual, some undealt with issue of my childhood, etc. You are sick therefore you have created a defect in some way, blocking your body from its natural radiant state, out of harmony with the universe...blah blah.
I had forgotten the prescription our doc gave my husband in the ER the night that I was there with my chin frozen to my chest!!
And they couldn't get an x-ray cause when they had me stand by the table and start to lay it down, I screamed with the pain.
The xray tech wrote "patient was very uncooperative"
I still have the prescription:
//Jane is to rest on the couch and be fed Bon-Bon on a silver platter by her lousy husband. Her husband is to wash the clothes and dishes, clean the home & take care of the kids.//
Yep - that did the trick doc - NOT!!!!!!
Last year my daughter, now 18yrs. had a seizure so she was sent to a neurologist who told me that after two weeks of antibiotics she would NOT HAVE ANY NEUROLOGICAL problems related to lyme that would have caused her seizure ten yrs. later. That she was cured of lyme and I should let her get on with her life. Oh my God, I was gona punch this guy, ya right no neurological problems after 2 weeks of antibiotics, give me a break. Yep, those ducks ya gotta love em or hate em!! Barb
stay off the internet is always a good one.
Everyone has that buzzing noise in their head, you've only just become aware of it. Yeah, I believe that.
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__TarCat
Doc: "There is no lyme in Chicago. But I know a doctor" (at - blank - Chicago hospital)"who treats lyme."
Sis: "So who does he treat?"
May The Force Be With You...
Obi Wan
"After three weeks of 200mg/day Doxy, 99-44/100% of my patients get over Lyme for good."
This was from the guy who told me that his office has seen approx. one new case per Dr. per day (in the summer months) over the years.
Let's see: 1 x 3 Dr.s x 60 days x 6 years = 1,080 cases
1) Lyme only exists in Lyme, CT. and Babesia only exists on Long Island
2) You have 2 years to live because you have Chronic Mono
3) "you are crazy and depressed, you need a shrink, You dont have Lyme, your western Blot is negative"
4) "You could not have had 70 tick bites at once, thats imposssible!"
5) Oh, those are all neurological symptoms, you better take some Kava Kava.
6) You need steroids for the rest of your life
7) "You need to accept this illness as a part of your life"
8) "Nobody is longer than 10 days on IV for Lyme, everybody gets cured" HA!
9)"It cant be Lyme Disease AGAIN, you already had it." Your Brain MRI shows you have MS.
10) Those are 70 spider bites you have!
Me: So who do you go to?
Dr.: You really need a psych. consult
ENT: Jordan is not sick, his mother just thinks he is.
PEDIATRICIAN: Make him go to school unless he is on his deathbed.
ID: If you have Lyme, you will test highly positive. Even if you have Lyme, it is only a nuisance not a serious illness. Two weeks of antibiotics will cure it.
ID: Doctors on the East Coast set up clinics just to treat Lyme and make money.
NEUROLOGIST: All kids have headaches and most of the time we don't know why. They usually are worse during the school year.
GI: Some kids have stomachaches and we don't know why.
PEDIATRICIAN: Could he be depressed? Go see a Psychologist.
PSYCHOLOGIST: Go see Pediatrician because not enough medical tests done.
ID: No reason to test for Bartonella and Babesia in Minnesota.
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Then I had a neurologist say that I was too stressed out and that this was all just stress. He then called my Mom into the room and blamed her for stressing me out (Let the record state that I was not under stress ... except for the fact that I was so sick and didn't know why! ... and my Mom has never pushed me or stressed me out) ... it's amazing doctors like these exist ... so scary!
1. No I won't order a Lyme test, sooner or later the HMO is gonna "ding" me for ordering all these labs" Poor baby, his bonus check was at stake. I work at the hospital and see this boob on occasion. I walk with forearm crutches due to permanant nerve damage and have a PICC line in- " wow, you don't look to good, what's going on?" My answer " some idiot Dr refused to test me for Lyme and it turns out I have it and now I'm screwed for the rest of my life." No reply from the jerk.
Neurologist ( king of the stupid ducks) " You are extremely anxious and need to go on Prozac" I asked why I had no reflexes in my feet and he replied " not everyone has reflexes in their feet" Huh???? When I requested my medical records it said all my reflexes were normal and my gait was "unremarkable". Hmmmm, I guess he didn't notice the footdrop on the left or that I can't stand up from a chair due to weakness.
I can NOT believe this!!!!!!!!! Especially about the boob doctor. Why are these doctors so dumb? What ever happened to the hippocratic oath they take? It makes me soooo mad all of these stories. Thank God for our LLMD!!!!!!! We would truly be lost without them if not 6 feet under. They are literally saving our very lives.
Liz
This actually happened to someone I used know. Sadly, the outcome was tragic.
Mom goes pumpkin picking with her kids. Daughter has Lyme and was in treatment for it. Sometime after returning home, daughter goes unconscious and into a coma. Daughter is rushed to the hospital where her LLMD practices (about 20 miles away). Enroute, she goes into complications so the ambulance turns around to taker her to the nearest hospital to be stablized because her life was at stake.
At the hospital she was taken to there is a self-proclaimed LLMD who believes that you are cured of Lyme after 28 days of antibiotics. Since the daughter had already been under treatment for Lyme for a longer period of time, the self-proclaimed LLMD poo-pooed the real LLMD's diagnosis and told the mom that her daughter really had a viral infection. Mom pleaded with the doctor, but was treated poorly. Doctor treats daughter with antivirals and daughter is still unconscious and in a coma. To placate mom, the self-proclaimed LLMD did try the daughter on IV antitbiotics and she showed some improvement but he didn't buy into it because "you're cured of Lyme after 28 days" and continued with the antiviral because he didn't believe she had Lyme. She was eventually transferred to the care of her real LLMD who proceeded with aggressive antibiotic therapy. She eventually regained consciousness (don't recall at which hospital that took place) only to be wheel-chair bound and no longer capable of coherent speech. Her mind still worked but she was no longer the same child. She was more like a child with cerebral palsy. The damage had been done.
The daughter passed away from complications several months later. Mom wanted an autopsy performed. I was told that the autopsy revealed that her little body had been infested with Lyme Disease.
So much for the "28 days and you're cured" theory.
..That last one was sad... guess it says a lot about docs these days doesnt it?
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Lishka
[This message has been edited by Amareo (edited 14 July 2002).]
[This message has been edited by Amareo (edited 14 July 2002).]
(This was 5 years after I had the rash behind my knee.)
This was in the August 1993 issue - I called them "Infamous Quotations" -
(Ed. note: The following are doctor's comments as reported by the patients to whom they were made. The quoted physicians are all practicing in northeastern Ohio, many at most respected medical institutions. Some are neurologists, rheumatologists or infectious disease physicians; others are pediatricians and family practice doctors.)
"You can't have Lyme Disease in Ohio"
"There have never been any cases of Lyme disease reported in Ohio" (there had been about 400 at that time)
"You don't LOOK sick!"
"It's not Lyme disease, it's LIME disease!"
Doctor: "You don't have Lyme disease"
Patient: "How do you know?
Doctor: "I went to Harvard."
About a child: "She can't be too sick; she's smiling."
"I have no idea what you had, but whatever it was, you're over it now."
"There is no such thing as Lyme disease."
"A hundred years ago, she would have been termed a sickly child."
To a child: "I think you are depressed and need a psychiatrist who will put you on anti-depressants. And you're just going to have to learn to live with it."
"If she doesn't have arthritis, she doesn't have Lyme disease"
"You couldn't have Lyme disease. Lyme disease is susceptible to penicillin and you had 10 days of penicillin in 1988."
"Even if it is Lyme disease, it wouldn't make any difference because there is no treatment for Lyme disease."
[Ed. comment: Do we need any further demonstrations of the need for physician education about Lyme disease????] (end of article.)
How awful that for the most part, the picture has not changed in the past 9 years!!!
Ann - OH
In 1996 when I was finally crippled by all my various "stress/over-exercise induced symptoms" and doc sent me to an infectious disease doc who was also a "lyme specialist."
ID Doc said my lyme elisa was positive but my western blot was negative so I don't have Lyme. It couldn't possibly be lyme anyway because I didn't have swollen joints (just excruciatingly painful ones). At this point, he looked down my throat and said "ah ha!! You have Fibromyalgia!" I'm not kidding.
When my condtion continued to worsen and I started having what were apparently petit mal seizures at the wheel of my car (the id duck and the neuroduck wrote in my records that these were "falling asleep"), they did some more testing to rule out epilepsy and MS. When those tests were "negative" the ID duck said I also had Chronic Fatigue Syndrome.
He said to "just go back to work" (at this point I could barely walk at all) and that I "should be glad I [don't] have AIDS." How do you respond to a comment like that??
(I definitely think that Boola wins the Suckiest-Thing-a-Doc-Ever-Said Award with that psycho racist comment.)
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Jen
quote:
Originally posted by Susie Jo:
!!
After six months of being desperately ill, barely able to walk, covered with a rash over my chest,back and face, slung over a chair because I was unable to summon the energy to sit, my long-time family Dr said he was going to send me to Dartmouth-Hitchcock because maybe it was CFS, he really didn't know what I had. Then, with such a smirk, he said You know, of course, what you have is classified as a somatoform illness.The alternative practitioners were no better, it was just put in "new age" terms that there was some hidden reason for my illness.... psychological, spiritual, some undealt with issue of my childhood, etc. You are sick therefore you have created a defect in some way, blocking your body from its natural radiant state, out of harmony with the universe...blah blah.
Dx lyme 7yrs ago pos blood, etc., after 3 yrs oral abx new pcp said "no more abx" due to 28 day rule. You all know the drill...
6 mos later new onset seizures, pcp said, "I think that your problem now is Lupus, "The Great Imitator"
2 yrs later vasculitis shows up on brain MRI, pcp said, "I think your problem now is MS, "The Great Imitator"
5 mos later pos lyme titer on spinal tap pcp said... any guesses, "Just like I thought, you have neuro lyme "THE GREAT IMITATOR"
to which I replied, hey I think I've heard this before somewhere. I know I'm 'a little foggy', but I'm sick, I'm not stupid.
[This message has been edited by Starphoenix (edited 15 July 2002).]
Ok, went to a psychiatrist after 2.5 years of worsening unexplained illness. I begged him to believe that I was physically sick. I said I felt so "desperate" for people to understand, for a doctor to help me figure out what was going on... I said I was not suicidal (have not history or act or intention) or homicidal ("). He said:
"THERE IS NO WAY SOMETHING CAN BE PHYSICALLY WRONG WITH YOUR IMMUNE SYSTEM IF TESTS DON'T SHOW IT." Nevermind he knew nothing of the tests done or anything. IGNORANCE!!!
Then he said, I think you need to be hospitalized in the adult crisis unit. I left before he could degrade me further.
Lastly, my most recent duck before I FINALLY found a wonderful LLMD saw me present with a case of bad tremors in her office. Two nurses tried to hold me down on the exam table to stop the shaking (not seizure). She said "ARE YOU SURE YOU'RE JUST NOT SCARED TO DEATH?" And, then "COULD YOU HAVE EATEN SOMETHING BAD?"
OH my Gosh! These things still enrage me. I have always been so rational and then to have this stuff said to me has made me feel so hopeless and lost. Thank God for my present and only LLMD!!!!
Wendy
After my 21 months old had several documented bullseye rashes, she sent us to an ID doc.
He told me that she looked fine, and other things can cause bullseye rashes. I asked "what?" and he said " ummmmm....spiders?"
-"Don't call or ever come in again! Be your own doctor. In 6 or 7 months you should be better."
"How often do you have orgasams? What is the percentage? When you have your movement disorder with your husband, can you stay on the bed? Wow, honey, you look great after losing all of that weight....(while staring at my ample chest....knee to knee and sweating bullets) No I didn't have the energy at the time to report him!
-"you have pseudo-seizures. (Fake seizures) Don't bother to come in again. "Stay off the internet. Get on with your life and stop focusing on what you can't do!"
_"You have had enough antibiotics to have killed a horse ...If you ever did even have LD"
and sooooooooooooooooooo much more duck talk. The stories are amazing...I just might print them out for my neuro!
Take care everyone-we will make it! There are still some good docs out there! Don't lose hope! Shall we all print this out and mail it to some professionals? What's the poll on this one?
terter
Like others.. I have had so many.. wouldn't know how to list them all..
Here is one I was just reminded of..
After a year of feeling horrible... I drug myself to work so when the kids got home from school they wouldn't find me there, dead.
Once there I dropped to the floor I was so weak. One of the hunters took me to the docs office.. I was there when they opened before 8 AM.
By then.. as I laid on the table unable to move... one arm was swollen and completely blue.. and ICE cold.
The other arm was red, sweaty, and HOT!
I couldn't even sit up, my eyes were watering, my head was pounding, I was too weak to speak... the room was spinning... etc. etc...
The nurse practioner.. who KNEW I had been sick for MONTHS.. asked me if I had eaten breakfast yet?
I shook my head "no".
She said if I started eating breakfast.. then I wouldn't feel so bad.
That will be $60.00 please.
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Please don't feed the ducks!
Your lists of funny comments just go to show how uneducated physicians are about this. I hope this changes in the future for all of us. I for one am working on this for all of us.
No matter what anyone tells you, educating yourself, on the Internet or in a Medical Library at your nearest hospital is a GOOD thing.
If you cannot talk with your doctor...find another. I find that good communication with your doctor is 80%+ of your treatment.
No doctor can know everything. If they say they do, leave as soon as possible.
I am on leave as a RN that is a patient educator of patients with kidney disease. I welcome the patient to my office that has looked up information...it gives us a place to start, or a place to correct falicies. Even if they are into alternative medicine, I say, as long as it can't hurt you, I would never say never. It is like this with Lyme. There are too many Dr. that are too busy to listen or are afraid to burst their egos...at what a cost to their patients. They have to work WITH you.
Yes, keep track of these comments. One day when the research shows they have it all wrong in the year 2002, wow, they will say, I should have been a better listener of my patients.
Now, I am seeing a great Dr. of Infectious Disease that is trying to get me retreated with Rocephin. (insurance woes). But one neurologist told me only that I didn't have Lyme...no other reason or diagnosis noted,or what I should be tested for and another diagnosed me with Trigeminal Neuralgia... did not even hear me tell about vision problems, joint difficulty...was told that Lyme neurologically only give a Bells Palsy (droopy face) and I did not have Lyme...even though I pain, numbness, weakness...
They need to stop thinking they have to make a snap judgement on the first visit...my doctor now does not do this and listens to what I find in my research.
And I really thing boola's doctor should be brought before a state Medical Misconduct Board...unbelievable.
This was a good one, after 2 days of horrible stabbing back pain when breathing, her ped said she was "over reacting" and I insisted on a chest x ray which she thought
was crazy. When it came back showing pneumonia she said that my daughter "brought it on herself by refusing to take deep breaths...(uh, what happened when she was sleeping???)
"A daily fever of 100 is not abnormal, send her on to school unless it is over l0l.5, she just needs to get with the program..she's depressed"...
"Her labs are mostly normal and her symptoms are so subjective, she must be depressed, I think it's time to send her for counseling
...."
yep, and on and on it goes...so easy to dismiss it all from your office when you are not dealing with it, physically and emotionally, from day to day....
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quote:
I have..many promises to keep,
and miles to go before I sleep..
Jessiemacmom
(I was 31 and had no children)
(ha ha I guess she hated feeding her kids!)
(Woops, showing a little too much of yourself, Dr.!)
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"I'd run away
But there is nowhere to go
So I'll stand and fight
And hope and pray
That the best is yet to come
And we ain't seen nothing yet."
--Tracy Chapman
My wife went to her orthopedic doc for wrist pain. He said there is a cyst and go to the Korean plastic surgeon who removes cysts (he has a VERY good reputation!)
This is the truth - the Korean doc told my wife that one of her arm bones is TOO LONG, and that he wants to operate on her, cutting the bone to normal length!!!!!
He said, You haf bone too rong in yo ahm. I gonna cutta bone, den you gonna be in cast fo one yeah. Den you come back gonna feel real good!
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www.afmaconline.com
""-"Don't call or ever come in again! Be your own doctor. In 6 or 7 months you should be better.
terter"""
Wow. Best advice I've ever had infered to me too...
""Shall we all print this out and mail it to some professionals? What's the poll on this one?
terter""
Oh yes! It should be edited, along with more stories and mass e-mailed (***spammed****) anonomously or with a fake authoritative return address (like harvard med school? JAMA news update?) to every single medical clinic and hospital in the country. All in the same week. Would start people talking.
My favorites-
"it's all in your head"
me- (look to kill)
her- "you need elavil!" (anti-psychotic)
another one- "it's all in your head"
me- (look to kill)
her- "you're aggressive!!!"
"you have a flu"
"your allergic to your shampoo"
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recently;
1st office visit;
me "I think I have late syphilis, I'm staggering and can't read"
doc "are you sure it's not lyme?"
me- "no. But I'm not sure about syphilis either. those tests are only 70% accurate."
doc "no they're not'
me "yes they are"
doc "no they're not"
me "YES they ARE. Please give me a treponomal test."
doc "no"
me "antibiotics?"
doc "no"
2nd visit
doc- "you were right, the syphilis tests are only 70% accurate. come back next week and we'll test you for both (trepenomal & elisa )."
Me "thank you. you know I found out the lyme tests are only 30% accurate. Can I have a western blot? it's a little better"
Doc "no they're not. No you can't. We don't do western blots."
me- "can I have antibiotics?"
doc "no."
I went & got my own antibiotics and started to treat myself. I also convinced the nurse to do a western blot. They sent it to unilab which doesn't do a full band report.
During the blood draw another doctor came in with wild eyes & yelled at me (yes- yelled) "this (lyme)is new to us. we don't know what we are doing!!!!"
me- calm & polite- "well, that's ok. well, can we send this to Igenix?"
doc "what?"
me "Igenix lab. they have a lot of experience with this."
doc still screaming "NO !!!"
me "they're good..."
doc "NO !!!" stomps out of the room.
3rd visit-
doc " test is neg you don't have lyme."
me "the tests are not accurate, & it isn't a full report on all bands."
doc "yes they are"
me "no they're not"
doc "yes they are"
me "can I have doxycycline?"
doc "no."
me "do you have lyme in this area? ...Do you treat lyme?"
doc "You have transitory viral menengitis. We will wait 6 weeks and see if gets worse. If it gets worse we will do more tests."
me "what?"
doc "something is effecting your 12th (?)nerve. Lyme effects the 8th nerve. It's not Lyme."
me "it's a bacterial infection..."
doc "no it's not"
me "then why do antibiotics make the neuro symptoms subside?" (look to kill. a look like what kind of doctor ARE you?)
doc "they do?"
me "yes. almost immediatly."
doc "oh. antibiotics are an anti-inflamitory"
me "no, it's a bacterial infection"(look to kill. a look like what kind of doctor ARE you?)
doc "OK !!!! I'll give you antibiotics BUT IT"S NOT LYME !!!!"
doc agrees to give 200mg doxy for 4 weeks. She is totally aghast & freaked out. Refuses to write possible lyme in records. I don't what she came up with for the records.... must have been highly imaginative.
me "thank you."
doc yells " I am NOT going to give a clinical dx for lyme."
me "it's supposed to be a clinical dx. not a test dx according to the CDC even. Whether I have Lyme or not, you have other patients with Lyme."
doc- "I hate antibiotics!!" leaves the room in a hurry. she is crying.
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herbalist at same clinic;
"stay off the antibiotics, they will kill you. we can cure this!"
me " which herbs cross the blood brain barrier? do you know?"
herb, looks confused "we can cure you!"
me "you don't know..."
herb (screaming. no, really...)"you are going to make yourself very sick and it will be your own fault" or something like that. He screamed about whatever for about 10 minits. I just smiled at him. It was actually pretty funny. We came out of that room and the whole clinic was looking at us.
that's pretty close to word for word & I think in that order... the entire clinic had a serious nervous breakdown & it was as good as a monty python sketch. And as infuriating. The CDC dragged this area & it has the highest known lyme count on the west coast. And some of the most ignorant doctors.
Do I feel sorry for them? h*ll no. They are killing people by not treating them. they don't what they are doing and are too lame to find out. People are starting to avoid that clinic big time. There is no waiting time there. it's a great place to go for a common cold.
[This message has been edited by caat (edited 21 July 2002).]
Like the Infectious Disease doctor who told me my fatigue was caused by my sudden post-bite need to take naps.
She then sent me to a Rheumatologist who gave me a 'scrip for a sleeping pill.
The ID doc told me to "Stay away from Lyme support groups, because those people are SO DEPRESSING"
(Can you imagine a doctor saying "Those cancer patients, what a glum bunch of fellows they are!")
The Rheumatologist asked me about 15 questions and seemed vexed that my symptoms were not falling into the RA profile. I said "Well I don't think I have rheumatoid arthritis"
She asked "What do you think you have?"
I told her that my problems had started with a bullseye rash that my primary physician thought was a Lyme EM.
She replied, " Oh no! Not that! You and everybody else WANT to have Lyme these days"
She charged me $350 for her 18 minutes.
And no I never took her sleeping pills!
me: how many Lyme patients do you treat a year?
ID:
"I DON'T HAVE TIME FOR THIS! I DON'T WANT TO HEAR ANYTHING ABOUT LYME! GET OUT OF MY OFFICE!".
2. "There's no way you can have Lyme cause there's no Lyme in Quebec (yeah, duh, it's not a reportable illness, and doctors refuse to test for it. Of course there's no Lyme here, diagnosed and treated that is)
3.
PCP: You are really depressed.
me: of course i'm depressed. I can't move.
PCP: Have you ever considered having a psych. evaluation done?
me: (in my head)yes, actually, to try and figure out why YOU think i need a psych evaluation when YOu're the one who needs it!
4.
me: (to a tropical diseases dr.)so here in this article you wrote in 1993 you say that the effects of untreated Lyme can be really horrible. So why aren't you willing to treat me?
him: we have very strict guidelines concerning Lyme.
me: I fufill all CDC diagnostic and surveillance criteria for Lyme. What guidelines are you talking about?
him: i'm sorry, i can't treat you.
5.
PCP: well, first i want to send you to do a neuro-psychiatric exam. it'll take about 8 months before you can get in.
yeah, and 8 months later i WILL be demented from Lyme and will NEED it!
7.
ID: you can only get Lyme in Connecticut
(and he has new editions of Emerging Infectious diseases magazines sitting on his desk).
i could go on and on.
anyhoo.
sparkes
I now have seizures, and they say it's either from active lyme still, (even the dr's know I was tx w/ 3 weeks amox, 5 months zithromax, 3 months zithromax, 4 mos doxy, all oral, but supposedly 3 weeks of abx cures lyme...
so now I am IV and hopefully it will get rid of any active lyme IF there is any there they say it should knock it out, but I may have scar tissue and continue to have seizures that are not being controlled well with my medications
And Finally...My favorite:
From Hugh C., intern extrordinare at a small hospital in an affluent Boston suburb, where I worked as a unit secretary while at college (the first time). We were on a coffee break, him, me, and my then boyfriend (a fourth year medical student on infectious disease rotation). I had recently caught a horrible med error in one of Hugh's charts. It would have killed the patient if no one had caught it. He didn't know I caught it, thought the head nurse had since she's the one who bitched him out. So it's coffee time and we start arguing. He was saying that all nurses and clerks were out to get him, saying some horrible things about nurses and my mom was a nurse there. It got ugly. Then he said:
"It's a good thing you're dating an I.D. guy...he can prescribe you an antibiotic to clear up your ****ty attitude"
It's my favorite thing a doctor said to me because about 15 seconds after he shut his mouth, he was wearing the contents of my huge styrofoam cup. Which were a whole lot of soda, some ice, and one slice of lemon.
Wahhahahahahahahaaaaa!!!!!!!
-Laura
Then You probablly have Diabetes. Lets change your diet. And, the next few days, You probablly have a brain tumor. I actually got the test.
This was all in the Lyme capital, Columbia County where there are the most cases. I pity anyone who has to put up with these ignorant ducks.
------------------
...on the house top reindeer pause....
Out jumps good old santa clause...
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New Yorkers,and others who are LL, please email [email protected] to help. Lyme Disease Association 888-366-6611 www.lymefnd.org URL=http://www.lyme.org]www.lyme.org[/URL] www.lymenet.org www.lymealliance.org www.lymeinfo.net/lyme www.geocities.com/ldbullseye
www.faim.org/lyme.htm
http://flash.lymenet.org/ubb/forum1/HTML/009342.html For those who need to talk, my home phone is 8605374287
1st visit - yup, that's a bullseye rash from Lyme Disease. 1 month of doxy will clear it right up.
2nd visit - hmmmm, still didn't get rid of the Lyme. 1 week of amoxycillin will clear it right up.
3rd visit - I only said you had Lyme Disease because it is what I thought at the time. But since it is not going away, I don't believe it is Lyme Disease. I will need positive blood tests before I give you any more antibiotics.
aaaaarrrrrggggghhhhhh
"You have too many symptoms."
Thanks a pantload, duck.
2nd doc throws his arms in the air and says"I don't know what else to do with you" I could do a MRI & CAT but this is exactly what the Ins companies do not like.
3rd doc said my ankles were swollen because I was under stress.
4th doc (a LLmd) looks at my positive IgG & IgM & the rash and says "I don't think you have Lyme)
[This message has been edited by Kathy Boss (edited 28 December 2002).]
Oh, and nearly forgot the first advice I got from a doc concerning my chronic fatigue: ,,You might drum with Your fists onto your breast. That stimulates Your thymus. Orang-Utans do this constantly, and just look how much energy they have."
[This message has been edited by LittleCat (edited 28 December 2002).]
1. in response to the Postive Bartonella test results, "You have a cat don't you?"
2. When asking my LLMD..."well, what about my positive Erlichiosis or my IgM results with the 31+, 34+, 93+, 45+, ect. He said,"Well that just means you may have been exposed...If I did an antibody test on you, you could show exposure to things just because you were sitting in the waiting room with my other patients"
------------------
June Bug
There was some justice--one of my test results came back showing that I had had LD.
Outrageous..I froze up, I didn`t know what to say or think. growls
Posted by HeathO947 (Member # 2890) on :
When I first started having symptoms (spacey feeling, fatigue, lose of appetite, headaches) I was a freshman in high school, an avid runner, and the Dr. told me I needed to drink caffeine!
A rheumatologist: "You have Lupus and you're going to have to live with the spacey (brain fog) feeling for the rest of your life."
Another rheumatologist (supposed to be Lyme literate, thought I had a connective tissue disease): "If you think that you have Lyme disease than you can leave my office!"... meanwhile I had a HIGH IgM, and he thought you could only have Lyme if you have swollen knees.
Cardiologist: "If you drink a glass of water real fast it will get rid of the dizziness."
A VERY well known LL rheumatologist: "If you don't feel better after three shot of bicillin that you only have Lupus, not Lyme."
Ear Nose Throat (for dizziness): If you open your mouth real wide, tip your head back, and stick your tongue out all the way, and hold it like that for 30 seconds per day, it will get rid of the dizziness... and you don't have Lyme."
Heather
Anyway, here are some of things I have been told so far:
1) It's only stress - rest it out (in the mean time cortisone shots will make it better!!!!)
2) We thought it was a rare form of cancer, but it's not so we will check for MS, Lupus, Arthritis, so we may start discarding illnesses.
3) You are so beautiful, and look SO HEALTHY! (but my blood work IS off the charts and I feel BAD!)
4) Are you sure you are feeling what you are describing????
5) I should transfer you to a psychiatrist
6) I'm sorry, I can't help you but there is a doctor who treats AIDS patients and has pretty much seen it all.... go see him instead!
7) I read on the internet that this is how Lyme should be treated - so this is what we'll do.....
8) The standard treatment for Lyme will have you cured in 2 weeks... no need to worry!
The surgeon who put in my catheter thinks I'm kind of NUTS and that there is NO need for an IV treatment since I don't have cancer.
He has suggested that I change my course of antibiotics (although he has never treated a Lyme patient) ---- NO WAY! Dr. H (in Houston) has been an angel in my life!!! It's been a long treatment but I can definetely tell I'm getting better...... slowly but surely!
i asked him why did the iv only start working after the 7th week
he replyed i dont know.
and something like science doesnt have ALL the answers.
what a moron.
when i was young like 11 (thats when i really got it i was test for all sort of stuuf but they said nothing was physically wrong with me)
they said all my symptoms was from drinking to much ice t
yes you heard me right ice tea
they was saying abunch of stuff that it was my fault i was sick... i was in tears
b******s
and of course the ever so popular it was from stress (i was 11 ... what were my barbies having problems getting along...my play kitchen resturaunt having fake money problems?)
childrens hospital is horrible!
------------------
New Yorkers,and others who are LL, please email [email protected] to help. Lyme Disease Association 888-366-6611 www.lymefnd.org URL=http://www.lyme.org]www.lyme.org[/URL] www.lymenet.org www.lymealliance.org www.lymeinfo.net/lyme www.geocities.com/ldbullseye
www.faim.org/lyme.htm
http://flash.lymenet.org/ubb/forum1/HTML/009342.html For those who need to talk, my home phone is 8605374287
Here's the link to the official AACFS webpage announcing the upcoming meeting.
http://www.aacfs.org
The CDC Advisory Committee Meeting is generally held the day after the AACFS Medical Conference, but I haven't been able to find any official announcement on the CDC website.
During the last 27 years, in order of the diseases they tried to diagnose me with (but some tests were not conclusive, and some were flat out negative):
1) Lupus
2) MS
3) Fibromylgia
4) Scleroderma
5) Late stage Syphilis (3 negative tests over 20 years and they STILL wanted another)
*Postive* for Babesia & Lyme.. and they didn't beleive those tests because I didn't look sick enough at the time.
Barb
also the np at my pcps office refused to fill my pain meds when my pcp was not there.she told me you are not getting anything for pain and thats that!! youll just have to suffer.mind you ive been a patient in that office since i was 19 years old im now 32 so she knows me and knows im no drug addict. she was just a rotten b***h
cheryl
This is the big biennial conf. on CFS sponsored by the CDC/NIH and the AACFS. Doctors from all over the country and from foreign countries attend, as well as officials from the NIH & CDC.
It would be a great opportunity to have recovered Lyme patient representatives present at a table or booth and to speak with doctors in the halls and on the sidelines during breaks between the conference sessions.
[This message has been edited by Jack Lemonlyme (edited 29 December 2002).]
Cheryl, an ``awful'' patient who doesn't blindly ``obey''
------------------
Lyme Disease Information Online:
http://www.lymeinfo.net
Lyme Disease Information By Email:
http://groups.yahoo.com/group/lymeinfo/
New Yorkers, please see:
http://www.lymeinfo.net/newyork.html
Neuro dx was carpal tunnel!
When I asked about my legs, he said Oh you cross your legs a lot.
Because I was furious and wanted to shock him into seeing how stupid he was being I asked him he thought I had carpal tunnel in my vagina too.
He told me to come back in a month for electrical impulse testing to determine how severe the carpal tunnel was. I walked out and never looked back.
Pomegranite
1- There is no lyme in our area of PA.
2- A neuro told me that I trained myself to speak the way I was speaking. ( I have bells palsy and slurred speech)
3- Another neuro from Cleaveland Clinic told me that I have a severe psychologic disorder and need to get help immediatley from a large univ. hosp.
4- the list goes on and on but fortunatly for me due to short term memory problems I can't remember?? but my husb. does.
Happy New Year Everyone!
other doctors have said: "your a mystery" or this will just go away. you need to exercise more and eat salty foods. "on paper you're healthy," maybe a psych consult. one laughed at me when i mentioned lyme and refused to test me despite my history of hiking, gardening, and ticks on my dog.
I was told a year and a half ago by the doctor who I went to with my Bullseye rash..
"Well, it looks like Lyme Disease. Even though Lyme isn't in New Hampshire, I'm going to put you on 3 weeks of Doxycyline - just incase you went to Connecticut or somewhere they have Lyme, and forgot about going"
After about 3 months of my going to him with Lyme related problems, he told me he thought I had MS and sent me to a Neurologist.
The Neurologist believing I had late stage Lyme, sent me to an Infectious Disease Doctor. She met with me, and ordered 2 lumbar punctures. (which I now know are useless tests for LD)
After reviewing all my symptoms and tests...
She concluded that...
1) I was cured of Lyme!!!
2) I probably had MS, as MS sometimes gets confused for Lyme. (Isn't it the other way around????)
3) When I asked her why I would start to get MS symptoms a week after I was diagnosed with Lyme? She told me that It was all in my head.
4) She also told me that I would just have to learn to cope with the pain.
So I told her that I wish she could feel the pain that I feel, and walked out.
She had the audacity to call my PCP, and warn her that I was hysterical, and wouldn't take her professional diagnoses... MS.
So I got my PCP to send me to a LLMD. He said I was a classic case for Late/Chronic Lyme. He ordered another round of Lyme tests, and they came back positive. ( no surprise here!)
My PCP and LLMD both reported the ID Doctor to the CDC. She is no longer a "Lyme Specialist" as she proclaimed herself to be.
So some good did come out of it... There is one less "Duck" in our Pond!
------------------
~ Missy
"Lyme is an enigma. While the debate rages over proper diagnostic and treatment procedures, patients get sicker and some even die." Pat Smith, LDA
quote:
Originally posted by lymebrat:
My PCP and LLMD both reported the ID Doctor to the CDC. She is no longer a "Lyme Specialist" as she proclaimed herself to be.So some good did come out of it... There is one less "Duck" in our Pond!
Hooray for your PCP & LLMD for doing that!!
Why don't more PCPs & LLMDs do this, too??
Thanks for posting about this. It cheers me up to realize that once in a great while, Truth is allowed to prevail.
"There is no disease in the world, which causes symptomes youre desribing. Thats why it must be stress."
"Stop running from one doc to another! Stop trying to find the reason for your pain! There are people doing this for 40 years. Is that what you want?"
"Since x-ray doesnt show anything it cant be anything serious. Wait until your pain is gone!"
"You think you have lyme? People who live in a forest may have lyme, but not a student in city."
"I also felt pain during my medical examn, went to the toilet too often and so on. It will disappear."
[This message has been edited by cayce (edited 11 January 2003).]
quote:
Originally posted by lou:
I am beginning to wonder if our experiences with Lyme diagnosis and treatment are really unique. Are they getting a lot of other stuff wrong too? Bound to be, if they are so arrogant and ignorant.
Lou......you have NO idea! Read some of the entries on the Google search below for duck practicing in local clinic (N MN) with TB.
This is the same clinic where an ID specialist discovered another tick related disease in MN...yet can't clinically diagnose LD in patients...he emphatically believes the Elisa test is more reliable than the WB...sad.
Tho it's even more sad when a duck does not have his patients best interests at heart and exposes them to TB. :-)
http://www.google.com/search?hl=en&ie=ISO-8859-1&q=TB+Duluth+Clinic+doctor&btnG=G oogle+Search
Barb
[This message has been edited by bargrafx (edited 09 January 2003).]
Why? Because we have resources available to us now that we never used to in the past. We can look up medical information and research on the Internet and be prepared with questions.
I don't think that a lot of doctors know what to do with a patient who asks medical questions. Look at it from their perspective: they've gone to med school for x number of years and here comes a patient with no medical background asking them medical questions and questioning their diagnosis. If the doctor has ego issues then folks seem to get the typical answers posted here. Kind of like a knee-jerk reaction.
Look at the story of the woman from New York who thought she was being helpful to her doctors by doing all this research on her own. All she got was treated badly. How about the doctor from TN who told his patient there was no LD in that state. OK, so the guy actually believes there are guards around the borders of his state who do not allow ticks or tick-bearing animals to pass.
No doctor is going to have "all the answers" but some seem to be more willing to listen and learn more than others.
All these stories should be posted on something like a "Lyme Disease Hall of Shame" web site.
I'll make this real short... Mrs. ****** their is absolutely nothing wrong with you and if you ever find out there is, write me a letter cause I could learn from you.
This dr. couldn't see the tic in my eyes, the tremor in my hand (couldn't even hold a cup without spilling it) showed him results of MRI's in black and white and he claim they were not so....for some reason you if you said something was black he claimed it was white....and he wanted me to waste my time writing a letter. I think not.
I went across the hall with my friend, she had an appt. with her dr. the same day. We were so upset about my appt. she asked if he could see my at some point. He said he would squeese me in on the next tues. which doesn't usually happen but he could tell how bad the tic and tremors were right off from seeing me,and that was not even after examing me...dahhh how can some ducks be such quacks....
I showed my picture-perfect EM rash to four doctors in Ohio:
#1: "Lots of bugs can leave a bite like that."
#2: "It looks like an ant bite to me. There are some really venomous ones around here."
#3: "Well, it doesn't look like a tick bite."
#4: "That doesn't look like anything to worry about. Get off those antibiotics."
A former student of mine is now studying medicine at Ohio State. When I told him my experience he was dumbfounded. He said every med student knows what a bulls-eye rash means. Hope for the future?
Jeff
ME: I was wondering if we should do some tests for MS because of the 15 lesions found on the brain MRI, along with my memory, muscle and joint problems.
DOC: 15 lesions could be normal for your age....Besides, most doctors are reluctant to diagnose MS because there's nothing you can do about it anyway. Also, you said you have pain, and MS is a painless disease..."
CUT TO OFFICE OF MS SPECIALIST
MS Specialist: "Take heart, there are many new treatments developed in the last 15 years for MS. And yes, chronic pain is a primary symptom in 70% of our patients...As for Lyme disease, I doubt you have that. We just don't see that here in California. Also, your rash did not have the bull's eye. But if you are concerned, we can run an ELISA test just to make sure. If that's negative, you definitely don't have Lyme Disease."
CUT TO SLEEP DISORDER CLINIC:
ME: "I wasn't able to sleep during the sleep study, so I don't think we're learned anything new about why I have hallucinations and act out my dreams during REM."
DOC: "Well, it's true that you didn't have any REM and very little Stage 3 and 4, but it was a success because we proved you don't have sleep apnea."
ME: "I never thought I had sleep apnea. I don't snore."
Later...
ME: "I read that hallucinations and acting out of dreams during REM can be a sign of narcolepsy. Is that true?"
SLEEP DOCTOR: "No. There are no studies that show that."
CUT TO MS NEUROLOGIST OFFICE:
Doc: "I want you to go to Stanford and do another sleep study. Hallucinations and REM behavior disorder can be a sign of narcolepsy. And there are some studies that narcolepsy can be associated with MS."
Do you think my neck stiffness comes from having to constantly jerk my head 180 degrees?
[This message has been edited by LucidMusic (edited 22 January 2003).]
Family doctor: "You're female. You're a teenager. You're just depressed."
The head of Children's Hospital: "You are a slug, plain and simple. You are a slug"
After telling a diagnostic duck that I had missed the greater part of my high school life because I was too sick to leave the house, he quacked: "It isn't interfering with your daily life. Get over it."
Internist: "It's all in your head."
I also had a witch doctor (not kidding) tell me that I had 282 "discarnate entities" attached to me, and that was the *real* problem. She said that I was in desperate need of an exorcism.
Right. Maybe the "discarnate entities" were bad vibes I'd accumulated from other ducks!
Poochini- Tell me about it;I got whiplash every time I saw a new doctor!
Health and Happiness...and strength in the duck fight,
Ashley
ROTFL !!!
I have another one.
I was asked to "help" which I assumed meant not only to find out which labs tested for co-infections, and the prices, but also to share some of the research I've done. ie- just plain information.
Bartonella was considered a fine thing to test for till they talked to the California Sonoma County Health Dept. I guess...
The conversation went;
Nurse " I don't know why we're testing for bartonella. Ticks don't carry Bartonella."
me "yes they do"
nurse "no they don't"
me "yes they do"
doc "no they don't"
me "well, no, they do. I can show you the documentation on that, would you like to see it?"
doc "no, because they don't carry it".
nurse reads the descriptions of various bartonella species on the test and laughs.
"trench fever?!?! we don't even HAVE trench fever in the US!!!"
nobody else laughed...
(lots of homeless people (& I'm sure others) in seattle do. I guess they are not considered part of the US.)
The doctor I guess knew this because she looked embarassed. Or maybe she could read me thinking... (why am I here?)
I'm not sure what was going on because the nurse kept asking if I wanted to be tested for erlichiosis after 9 months of doxycycline. I said I don't care- whatever. You want to test me? You think you should test me?- test me, I don't care either way, really, I'm fine with that, but I do want the bartonella.
She seemed to be trying to talk me out of the bartonella test after the doc left the room. Why? I have no idea. Doxy doesn't work w/some bartonella. What possible agenda could she have? Why on earth would it matter to her? Does she not want to beleive in it? Is it against her religion or something? Of course I was scratched by a cat, Lady, please, just give the #$%^&*! test!
She didn't test me for erlichosis. I don't care. But maybe I should have. I now read some strains are resistant to doxy. Maybe she was right on that one. If she knew why I wish she'd have told me.
(Actually I probably have more than one, but this one beat all the others)
After months to years of chronic UTIs, bladder infections, kidney infections for which no one could find an answer, my body came near to giving up completely.
I ended up with a whopping kidney infection. So bad that my urine was bright red. Now here it comes (you guessed it ladies):
The doctor: "Are you sure you are not on your period?"
Let's see, had four pregnancies, three kids, started menses at age 11, now 31, hmm, yeah, I think I would know when I'm on my period. Besides, it feels like a donkey kicked me in the back, my face is gray as ashes, I am so weak I literally can't stand up, and I have a raging fever.
Doctor: "Well, just to be sure, we'd better put in a catheter and collect a clean urine sample. The Nurse Practicioner will be in to do that."
NP: "Hmm. Urine is still bright red. I'd better have the doctor look at this."
Doc: "Hmm. NP must not have done the catheter properly. She will be back in to redo it."
NP comes in to insert a larger tube. "Hmm. Urine still bright red. Let me tell the doctor."
Doc to NP: "Are you sure you did this correctly? Well, go ahead and test it anyway."
NP returns: "Doctor wants you to see a specialist ASAP. You must have a massive infection. There is so much blood in the urine we can't even test it."
Then, the office took days to arrange for me to see the Urologist (was in an HMO). After he sees me, they all panic. Apparently I wasn't too far off from renal failure.
[This message has been edited by Annie Fannie (edited 24 February 2003).]
He came in, introduced himself, and went to get my file. I sat there for one hour, listening to him talk cars on the phone in the next room. Pretty soon I'd had it and peeked my head out; he saw me and jaw dropped two feet.
He entered the room and said I needed my leg amputated up to the knee. I noticed my name was not on the file and he said must have received wrong file; he left the room.
Thirty minutes later, he came back with my file and said I still needed amputation!
Good thing I thought about it, as two months later an xray showed the "tumor" was gone. (I found out later "it" moves from joint to joint) but didn't know didly then what I know now!
There would be nothing left if they "took off" everything on me that hurts!
------------------
Patience is the companion of wisdom.
They state... yes.. they really do...
"Patients with chronic fatigue, joint stiffness &/or muscle aches should not have Lyme disease serology & should not receive Lyme disease treatment."
HUH? Excuse me?
What problems DO I need to have before being tested or treated?
Oh.. that's right... I was suppose to say I have green bananas growing from my ears, a butterfly tattoo with wings that move, and really loose legs than can face forwards or backwards depending on the direction I want to go.
Geeze... I wish I would have known that when I went there!
------------------
~Kristina~
post-treatment(1999): "there's nothing else i can do for you, you're going to feel this way for the rest of your life". haha, funny! because i definately don't feel that way- i feel ten times worse!!
(2003)"you have chronic fatigue syndrome, fibromyalgia, hypermobility, arthritis, and attention defecit disorder".
ha ha ha.
When I told the infectious disease doc I thought I had symptoms of Lyme including Left sided tinnitus, left eye blurring and conjunctivitis, numbness, tingling, and pain on the left side of my face (etc etc etc), and I was worried that my face would start to droop with bells palsy he said: "Don't worry dear, you have such a nice smile. It would be a shame....and you don't have Lyme. People don't get Lyme. I think you're just depressed because you weren't able to get pregnant (I had been trying before). I told him I am a psychologist and had just published a book on depression and that these symptoms are NOT depression. He told me: "That's your problem! You're trying to diagnose yourself." No kidding!
GI doc: "Just let me pull that picc line out of your arm. You don't have Lyme. Your problem is that you're receiving too many medications." (Ya, but why is that?) Oh those are just neurological symptoms. (Uh huh.)
Neurologist: You don't have Lyme. Lyme disease is a myth. Besides, it's not true that people get it back east. (I guess he's never heard of Lyme Connecticut!)
Anyway, just thought I'd add a few for the fun of it.
ID of Vermont - asked for an appt. thru my pcp because he would not give me an out-of-state referral for treatment by llmd.(mind you I had just had a RI ID Dr evaluate me with late CNS Lyme).
ID/VT: "We have no reason to see you because your pcp said lyme test was negative".
ME: "You won't even see me?" "You must know the percents and reasons for false/negative tests?"
ID/VT: "We have spoken to your PCP and we will not see you"
I can only imagine just what that conversation was????????????
4 years previous was dx'd with MS after a year of awful reactions to steroids and therapy drug, I insisted on being tested for Lyme.
Neurologist: "A elisa test?" I don't know if we do that here."
ME: "Duh I think you have a full blood testing facilty downstairs, this is the health center of VT."
Neuro: "And what are you going to do when it comes back negative? You have to face reality you have MS."
Me: "I am facing reality! I am just want to be certain I am treating the right thing."
CHEERS TO MY HUSBAND........A year after MS dx one night I was crawling in the door from the car he was standing in the kitchen looked at me and said "Honey You misunderstood the Dr. He didn't say you had MS - He said YOUR A MESS".
Atleast someone was paying attention
gonna make it! oceangarden
Here's mine:
Scene One:
I go into see my doctor....has decided to give me antibiotics "just to see" if anyting happens....I'm totally bed ridden...can't walk....have migrains.....
Scene Two:
We go back to the doctor to let him see how it "has" effected me....and start asking him some questions....about Lyme...telling him what we have found out.."by the way...I had had a positive Lyme test at this point.
Me: We have some things here we would like you to read....we think this is the Lyme.
Dr. Just who do you think is the doctor here...me or you??? I'm the one who went to college all those years....don't you think I would know more than you?
My Thoughts...: If you don't know....why am I here seeing you....?? And does little old me threaten you???? Opps....sorry...I had an opinion about myself....how dare I? Ok...let me blindly turn my life over to you...because gee...you sound like you care so so much....and my last thought.....how do you fit patients into your office...with that ego????
Mine:
ID at Childrens Hospital:
I feel that your son has No active Lyme, has no coinfections and he'll be better in 2-3 months, after his body has cooled off
ME: Are you going to test for coinfections? and what if he gets bitten again.
HER: No - there's no need for a coinfection test - I can't pronounce them anyway. And look at the bright side, if he gets bitten again, he'll be immune to it!
She's supposed to be a SPECIALIST??? HA
JoAnne
"You are getting older"
"you look fine to me"
"You'll feel better when the weather improves."
So......
Changed to a new doc/with a clue on friday.
Getting more specific tests at IgeneX.
irongirl
[This message has been edited by irongirl (edited 18 May 2003).]
SandiB
By that time I had seen an LLMD and diagnosed. When the ID doctor asked who was I seeing, I told him. He said, "oh, yeah. Beware though, he's one of those doctors who believe in chronic Lyme". Like I should be scared??
Then...when she came out of the hospital after recurrent bouts of Congestive heart failure and pericarditis, we were instructed to go to the pulmonologist, who promptly told Lishka that her only problem was she was depressed....I challenged him on that, and he turned to me and said, well shes not depressed really, just stressed out because you are so stressed....
I told him, yeah we are pretty stressed, from dealing with dumb*@$*! like you! Comon lishka lets get out of here.
"Sounds like PMS"
quote:
Originally posted by boola:
"Its probably just the start of menopause."(I was 39 at the time.)
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Close runner up:Me: This medication is making me gain weight.
MD: Medications don't cause weight gain. Eating too much causes weight gain.
Me: But I wasn't having any weight problems before I started taking the medication, and since I started taking it I've gained more than 30 lbs.
MD: If you weren't eating too much you wouldn't be gaining weight. After all, there weren't any fat Jews in Auschwitz.
P.S. I am Jewish.
I hope you slapped him BEFORE you spit on him! no sence you messing you hand
Sent
Here is mine. Remember I am a tri-athlete and martial artist. I danced clasical ballet for many years before that. My thighs have so much muscle mass that before I got sick I had to wear baggy pants because my thighs would not fit in regular pants till loose fitting jeans came out. Lyme struck with neuro sympthoms and I could no longer walk right let alone train. I gained weight at an extradornary rate I gained almost 90 lbs in 1 year. But at the time it was about 60 extra pounds. My ID said to me, you have had the IV Rocefrin now you are cured, the reason you cannot walk is all the weight you gained! I asked what about the absence of reflexes on my left side? and the diminished reflexes on my right? wouldn't that effect it. He just gave me a stupid smile. He told me when I walked into his office for the first time I was the ONLY PT he had ever even heard of whos blood tested negitive but spinal fluid tested positive for lyme. He had to "look it up" but in the following 4 weeks he became an expert.
My latest neurologist just droped me: "Your beyond my ability to treat. I just don't know what is going on with you or how to treat you" She said this as she handed me back Dr B's guidelines that I was courtious enough to get for her.
No wonder I look to God for my healing. These morons aren't goning to do it.
Sent
Here is mine. Remember I am a tri-athlete and martial artist. I danced clasical ballet for many years before that. My thighs have so much muscle mass that before I got sick I had to wear baggy pants because my thighs would not fit in regular pants till loose fitting jeans came out. Lyme struck with neuro sympthoms and I could no longer walk right let alone train. I gained weight at an extradornary rate I gained almost 90 lbs in 1 year. But at the time it was about 60 extra pounds. My ID said to me, you have had the IV Rocefrin now you are cured, the reason you cannot walk is all the weight you gained! I asked what about the absence of reflexes on my left side? and the diminished reflexes on my right? wouldn't that effect it. He just gave me a stupid smile. He told me when I walked into his office for the first time I was the ONLY PT he had ever even heard of whos blood tested negitive but spinal fluid tested positive for lyme. He had to "look it up" but in the following 4 weeks he became an expert.
My latest neurologist just droped me: "Your beyond my ability to treat. I just don't know what is going on with you or how to treat you" She said this as she handed me back Dr B's guidelines that I was courtious enough to get for her.
No wonder I look to God for my healing. These morons aren't goning to do it.
Sent
one of the sympthoms of lyme is repeating yourself
[This message has been edited by SentByHim (edited 13 July 2003).]
The duck's notes on the first visit said "the patient promptly forgot what was just told to her and repeats herself multiple times. Her speech sounds odd but I wouldn't quite call it slurring." He gave me a diagnosis of Post Traumatic Headache Syndrome and sent me home with a common antidepressant.
I laid in pain for 2 days crying and went back to the duck. I told him that "everything in my head feels like it is so swollen that my skull bones are going to split apart. I don't feel like I am getting enough oxygen to my brain"
His response was a chuckle "Ha...., trust me you are getting plenty of oxygen, you just need to increase your trazadone. Take 4 this time!"
Needless to say, it took 3 years of duck switching, and a severe progression of illness and disability, to finally get tested for lyme and start treatment.
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Can't do better, unless you know better!
Doctor: "Well she looks healthy"
Me: "And does AIDS patients, what's your point?"
ME: Sweaty, shaky, stoopy grin: "Guess what,
doc? I know wut it is! LD !!"
DUCK: Fabulous, flashy, totally blindingly white new ,but her own, toothy smile:
1. "Cannot be LD as there is no LD in British Columbia."
2. "I do not know anything about LD, anyway"
3. "But! Will do Provincial lab test"
done & sent that day, jumping ahead: results
neg as totally bogus anyway
ME (couple days later): "Send sero to LLMD"
DUCK: "I am not prepared to do that. You do not have LD. Test was not for LD anyway.
Why u want go to another dr??" "You are of an age (51) so sweaty is normal!"
ME THINKING: later for you, sweetheart, will deal with that pile when stronger.
PS Prov lab results were in hands by fax of LLMD next day,
so she's not entirely stoop eh? Crafty duck even tho we here in Canada are not known (erroneously so??) to be litigious(sp).
So off I go to LLMD only about 1 hr from my
house. Incredible for a place in SW Canada
that has NO LD. Clin dx of course LD.
Antibs that day. Two biggest are EM and
unable walk soles feet so incredibly sore;
but walked yesterday around house a bit and
am paying dearly for it today. Igenex test kit on it's way to me now, should arrive by end week. Later on that.....
Anyway, hallucinating late eve in dark, unable tell where am in bed. Anyone with that experience at beginning trtmt? Sorry,
have read quite a few pages this site but don't have lingo down yet and anyway am too
old (ha ha) to learn it. Feel thick as a tree trunk..
"oh, that's a sure sign of leukemia."
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jeni
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Stay positive. Smile. People care.
He said I had the flu.
And this was after he knew I had been sick for 6 MONTHS!
It must be one of those rare permanent cases of the flu.
What a dumba*s!
------------------
D.C. Chris
she asked me if the swelling, cracking and bleeding in my feet might be due to depression.
i looked at her with an evil eye, so she said she would ask the doctor. she came back 45 minutes later and said:
"we think it's connected to the lyme."
------------------
jeni
"There's no such thing as chronic Lyme"
When I told an ID that I was going to a particular LLMD, he said, "oh, just be careful. He's one of those that believes in chronic Lyme" Heavens, I wouldn't want to go to a person like THAT (that's me thinking of telling ID)
Lishs ID doc when the picc line broke and we needed to put in a chest port to continue ABX.
"well, its gonna leave a really awful scar right over your breast area and when they put it in it will cause pain for a few days. I think we should reconsider whether we should continue with treatment since the side effects (scar and 2 days of pain) will be so significant."
Because of ringing in my ears, I was told to have my hearing checked (1991). Asked the dr what causes the ringing and he said that about 80-85% of cases are from unknown cause.
When I asked about Lyme disease, he said:
"We don't waste our time studying an illness that we'll see only one bizarre case in a lifetime."
Situation I:
Exam room "discussion" w/rt the most pertinant aspects of the dignosis and treatment of lyme, and having seen comprehensive, exhaustively detailed medical records, including one West. Blot for lyme Ab (Igenex) according to the CDC, one lyme west. blot from Stonybrook, with an insufficient number of positve antibody bands, 1-2 bands being specific for Bb; Lab corp results = totally negative; 110+ photos of disseminated rash from two separate occasions when I was bitten, darkfield microscopy results, actual medical images(MRI,CTSCAN), and results of specialized blood work.
After "discussion" and presentation of the foregoing "evidence-based medical facts," one of my doctor's explicit statements were:
"Well, you can't prove a negative."
His in-office conduct verbally low-key pretension to "deep" consideration of data, but comportment, countenance, ocular dialect was quite hostile:
Translation:
I'll say anything I want in the service of my hidden agenda(s), come up with every psychiatric label and character assasination against you and you can't prove otherwise.
Situation II: In Office:
Infectious Diseases Specialist's statement to me: "I want to see 5 bands on the IgG and 2 bands on the Igm..."
I only wish I had a hidden tape-recorder, or transmitter when this was said.
This statement was after all healthcare providers received the explicit warning from a Federal agency about the "...widespread mis-use of the lyme western blot results..." as the sole diagnostic criterion of lyme disease.
Situation IIIOne phone discussion:
Me: " If labcorp's results comeback with insufficient number of bands to test positive, then what..."
Infect. Dis. Specialist: "We'll put 'em all together." Meaning combining the lyme West. Blot results from Stonybrook and Labcorp's lyme west. blot results.
He said this in a low-keyed, vocal tone of quiet-confidence, and inherent sarcastic, dupping laugh.
Dq
[This message has been edited by DiffyQue (edited 22 July 2003).]
[This message has been edited by DiffyQue (edited 23 July 2003).]
[This message has been edited by DiffyQue (edited 25 July 2003).]
Another guy told me I could control the Lyme symptoms solely with dietary changes. When I told him my neurological symptoms were pretty severe, he got angry and said, you know, you shouldn't be so contentious, because someday you may meet a man and then there will have to be harmony.
Even though your western blot is positive, it doeasn't mean that you actually have lyme disease. You could have just been exposed.
This was a few months after reveiwing the same results and saying......
This looks like you have an active infection
Hummm, time for a new PCP????
Ahem I am a 37 year old male.
I hope he was kidding.
Never the less he said it as he was perusing my chart.
Sent
His recommendation: "Go swimming 3x per week and come back and see my in six weeks and you will be fine."
1) Lyme doesn't exist in Ohio. Then the doc pulled out a map of the border of Ohio and NW Pennsylvania. He then told me that the area where NE Ohio borders Pennsylvania was the only place in OH where I could have gotten Lyme. He never asked any further questions of me and left the room.
2) I was recently in the hospital where the neurologists ganged up on me and told me Lyme does not exist in OH. I was having vision problems and speech problems at the time and they told me AIDS was a possibility for causing my symptoms. I agreed to give blood. I tested negative (like I was worried). The neuros also told me they ran an Elisa against my blood fo Lyme and it too was negative. They obviosly did not know the first thing about Lyme.
2) Years ago I went to a neurologist. I asked him for a Lyme test and he got really angry with me. He threw the paperwok at me with the script for an ELISA bloodtest. He then proceeded to tell me that he didn't know why I was bothering with the blood test because they always come back negative. He did not even listen to my request for my blood to be sent to IGENEX.
I have many more examples of stupid docs stories!
Karen
My GP is on vacation, so another doc in the practice sends me for bloodwork. They do ELISA and western Blot. Elisa is elevated and WB is "negative". (a local lab did the work)
The doc who ordered the bloodwork says "your pneumonia can make your titer go up."
The nurse says well "you only have lyme if both the ELISA and WB are positive"
The doc returns from vacation and says that the pain in my wrists and hands are carpel tunnel flaring up, the pain in my chest is heartburn and when I told him that I wasn't sleeping at night, he asked if I'm having some sort of anxiety.
Then he diagnoses me with ehrlichiosis and gives me 4 wks of doxy to shut me up.
3 yrs later I relapse and here I am a year later still dealing with this #$%!%%~@#$#.
Sheesh!
Pea
[This message has been edited by GreanPea (edited 02 November 2003).]
He said "Could be a brain tumor, could be a growth on the brain or spine. But I think as you are self-employed and under a lot of stress, you just need a vacation with no phones ringing."
I told him my husband had an appt with a neurologist scheduled and he said "Oh good idea."
We won't go back to him!!
ER Duck: Everything checks out fine; blood, CT scan.
ME: What do you think it is?
ER Duck: You know, she's a girl, 13... It's a rough age... there's no many pressures nowadays...
ME: And you are suggesting -- what?
ER Duck: Take her to therapy for emotional issues.
ME: She's SICK. She doesn't have emotional issues.
ER DUCK: There's too many symptoms.
ME: Too many symptoms should be a CLUE to something!
ER Duck: I'll give you a referral to therapy.
Help yourself...
Up for new members...
#1- (PCP) If your b/w is normal you're manic depressive (2 weeks later 2 IGM 7 IGG w/b)
#2- (PCP) Herxheimer reaction? Ohh it can't be that bad take 2 alleve...
#3-(nurse) What sort of tests do you need to see if you're having this 'herxheimer reaction?'
#4-(PCP and a LLMD) You have Fibromylagia now, take these....
#5-(ID) Even IF you had Lyme, you're allergic to the antibiotic I would use, so.. Don't worry about it... I think it's your thyroid.
#6-(PCP) You have a brain tumor (after a neuro exam-pin pricks etc) I said-"I have a negative triple phase bone scan, and negative brain MRI-no I don't..." (She walked out...)
#7-(PCP) You have tattoo's it's probably Hepatitis...(after flipping thru my b/w from another PCP mind you...)
#8-(immunologists) You have 'chronic hives' and the western blot results mean nothing more than you had it, I don't know what's causing your meurological symptoms.
(University of Medicine and Dentistry)
-BTW- I tested + via LP 2 years later for Lyme...
#9-(PCP) The # of bands on a western blot mean nothing, it just means you're positive for Lyme... (questioning my 2 IGM, 7 IGGs) same dr gave me an initial treatment of 3 weeks trimox..
#10-(allergist) With all your allergies, you must have AIDS......(over active immune system=allergies).... my reply- I just got a 200k life insurance policy 2 months ago, and they tested me for AIDS- it was negative.
#11-(allergist) Even IF you had Lyme, I won't desensitize you unless it's out of your pocket, as insurance won't pay me enough to spend the time in the hospital w/ you for something YOU think is Lyme...
(2 yrs later + LP to Lyme)
#12-(Allergist) I don't know why when you're placed on steroids you can't walk....
#13-(Rheumatologist) It could be Lupus, as you have a 'malar' flushing on your face, but you tested negative, I think you DO have Lyme, but I am afraid to treat you due to all your allergies....
#14-(PCP) Your sons EIA is .30 he's negative for Lyme, I don't know what's causing his symptoms.
#15-(PCP) I don't know why your son walks weird while on Biaxin, it could be that the allergy is settling in his joint....
#16-(Dermatologist) You REALLY need to be evaluated by a University...
(just came back from UMDNJ)
#17- Have you traveled out of the country?
#18-(PCP)I don't know if that's ringworm or Lyme...Ohh you're going on IV soon-good don't worry about it...
#19-(neurologist) You're having uncontrolled seizures, you need to see a neurosurgeon..(misdiagnosed w/ seizures)
#20-(neurologist) Ohh that LP was POSITIVE for Lyme? Ohh, I don't know how to read those tests....(swear to god this lady was a nut)
#21-(neurologist) My patient does NOT suffer from seizures, she infact has Neurological Lyme Disease.... (re instating my drivers license from her misdiagnosis)
#22-(PCP) Your 2 swollen ankles COULD be due to an exisiting Lyme infection, but let's do a stress test on your heart to be sure.....
#23-(PCP) I don't know why when you're on steroids you can't walk, and you need them for this allergic reaction...take some alleve then....
#24-(immunologist) You don't have anything that shows up from our exam (bone scan, cultures, entire workup of 40 blood tests, skin tests for allergies, stool tests for parasites, test for TROPICAL diseases) I don't know what's causing your symptoms, and you DID have Lyme, but it's negative now.
#25-(PCP) I don't know why you think your heart is beating weird, there's nothing wrong-(he leaves nurse comes in) I said, listen to my heart okay? She says okay- she listens, I move my finger to match when its coming-she goes back out to PCP and insists I get a holter monitor.....
#26-(cardiologist) I don't see anything wrong w your heart besides MVP and regurigtation, and I dont know why your ankles are killing you so badly on the treadmill- do you have arthritis or something? (had just explained the Lyme tests and my symptoms)
#27-(ID) your brain MRI and LP are negative for MS, and for Lyme, and the antibodies can carry over so the + western blot means nothing, you'll haveto come into the office to discuss this...
#28-(ER) Why did you have a LP? (for Lyme), well we are going to give you an IV line incase you need antibiotics-(I relpy I am allergic to antibiotics) she says- well what ones? (I roll my eyes, and state it's on the CHARTTT duh) and refuse the IV...
#29-(Neurologist)-You DO have Neuro Lyme, here fill this perscription (as he pushes me towards the door at 4:45 pm) I say, am I allergic to this??? He says-Ohh you have allergies??? Let me see that script...
(I say-well what family is it?) He says it's Rocephin, it's a Cephalosporin, ( I say- I went to the ER w. a SEVERE reaction to Ceftin- I can't take this it will kill me) Yoins script out of my hands and starts making phone calls...
Thats all of them I can think of for now... but I am sure more will come for me to add..
Rose
[This message has been edited by rosespetal (edited 29 January 2004).]
"Your leg pain is caused by your mother's inability to accept your growing independence."
Me: I was diagnosed with Lyme disease which I have had for at leat twelve years.
Duck: If you had Lyme disease for twelve years, you would be dead.
Me: Well, I'm not. I've been in treatment for six months and getting a lot better.
Duck: If you take a bunch of antibiotics, you are going to feel good.
..........................................
Huh? Under what set of conditions would that be true? Bacterial infection, perhaps?
1st: "If the blood is flowing properly to your heart it's flowing properly all over your body"
This was after concerns that blood flow to my head wasn't right.
"Don't come back unless you drop to your knees or lose consciousness"
"If you have encepholaphy you'd be in a coma.
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Duck 2: "You do not have Lyme. You have a psychogenic disorder (Its all in your head)"
Duck 3: "You could not have Lyme. You did not travel to a Lyme area (I did) and you can only be infected by a fully engorged adult tick. They are big not the small thing you are describing"
Duck 4: "I cannot read this report from Ignenx. I am going to do tests of my own!"
An allergist told me that there is no chronic Lyme and it was made up by doctors in Lyme Clinics to make money. He added that people, especially women, have little to do so they create these symptoms.
He was a duck and a half!
Ducks are dummies...
I asked him if the bite could be causing my symptoms. He said, "No, I doubt it. We don't really have Lyme and all of those other tick diseases here in Texas."
He said, "Don't worry about the bite and let's wait and see if the symptoms go away."
Still waiting...
ARGH!
To make a long story short, after 2 years of neuro problems and numerous neurologists........beginning with what was diagnosed as Bells Palsy.........which I was told "moved" and has caused numbness and tingling in my arms and legs, in addition to pain I was sent to see the "top neurologist" in the southeast. A professor emeritus at a the large teaching hospital in my state. He reviewed my records, this 80 year old expert, spent 10 minutes with me and then said, " There is no "objective" reason for your symptoms..........what you are feeling is "subjective". Do you know what "subjective" means?" . Before I could answer he went on, "It means you think you have these symptoms". Mind you I am 6'3", about 250 pounds and before all of this I bench pressed 400 plus pounds, 3 times.......:-). Then he said, "You understand...you think you have these symptoms"...........I had to laugh.
Then............"you have a good quality of life...........be thankful".........of course he didn't hear me when I said there was a problem with my symptoms and my career.........namely that I am unable to draw a firearm from my holster.........because I can't feel it.and haven't been able to for over a year.
When I reminded him of this aspect of my condidtion he said, "Well you will just have to find another line of work".......I left before I was tempted to tear his arms off.........:-)
So much for the "top neurologist".........:-)
Other student health doc told me I may have benign ataxia. although her assumption is wrong I am very thankful for her help. she got the ball rolling by referring me to outside help. she was truly concerned and wanted to find the cause of things.
Neurologist said I was depressed and wrote on his report that he suspected drug use once we acquired records. also found a memo that I was not told about where he suspected Wilson's disease.
After serological positive IgG by the CDC standards mine you on top of that, my infectious disease doc concluded after a lumbar puncture for a PCR test (which has as low as a 5% yield that I have read in some studies) that I didn't have lyme disease and that false positives were very common and that I may have been infected long ago and just show left over antibodies
Actually his assistant was insisting on IV Rocephin for 3 months but he quickly said it wasn't necessary and prescribed 200 mg of doxy a day for 2 weeks as a precaution.
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Click here to join AIM Chat for Lymies
Click here to join my Yahoo group for lymies called "Lyme On A Dime"
BTW, I lodged a complaint with the Medical Board against this DR. and pursued it to the end.His patients have my deepesy sympathy.
My next ID Doctor(in Princeton area..didn't i learn from my first mistake..also found out they knew each other.,.she said to me "You may very well have what we call chronic lyme but until you test positive you won't find a doctor in the PRinceton area who will treat you with antibiotics."
This goes on and on and now I am even sicker than I had to be..these doctors sucked!
#2 - Lyme disease does not exist in Florida.
#3 - Babesia and Erichlia are extremely rare diseases, we don't need to test for those.
#4 - A diagnosis of Lyme Disease would be opening up a can of worms, lets look for the real reason why she's not feeling well.
(said by my daughters pediatrician)
#5 - After my insistance about the tick bites, my PCP had to look up in the back of a book what kind of test to give me. When I asked how many people he had tested for Lyme disease his reply was "only one in my whole career", (this man was not young!)
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Julie G.
___________
lymeinhell
He is now practicing medicine in Hawaii.
Also: Because it was her IGm that is Pos. there is no way you could have passed it to her in utero, it is too large.
Uuuuuhh....HUH?
[This message has been edited by lookin4answers (edited 20 August 2004).]
sue from downunder.
I didn't have the strawberry tongue, though. Also, there was no other kid with scarlet fever around and I didn't infect anybody else with it, myself. However, as in 1960 nobody knew about Lyme, I cannot blame him for that.
But later, I was the only kid ever heard of, who - according to him - got Mumps THREE TIMES!!! He said he had never heard of such a case before, but thought it was probably because I didn't have it properly the first two times ... haha!
Gabrielle
I am sorry for laughing so hard about this. It really is quite sad.....but...I just can't help it right now.
I was reading these and getting so sad...but..CHEESE?????????? LOL!
It seems that some ducks become more stupid instead of smarter.
From another local ID doc....."Even with positive blood work, you couldn't have lyme after three weeks on doxy. You clearly are mentally ill and in need of therapy." He then tossed all my records in the trash, turned on his heel and walked out.
His nurse followed me to my car and found me crying. She told me that I was not insane, that their medical group, 1500 doctors strong, would be penalized for treating lyme beyond three weeks by Blue Cross...they would lose the monthly bonuses and then be penalized further if treatment continued...
His suggestion, just dont treat, it would go away eventually!
he referred me to a guy on park ave, nyc, who did elaborate acupuncture on me.
he initially said i would be fine in 2 months. he later recanted that and said spring, it was fall. i started to become wary.
after 4 months i sent him a check (i owed him some money) and a letter thanking him for his time trying to help me and best of luck in the future. very congenial.
3 months later, when i was just dx'd with lyme (and herxing), he sent me a reply letter.
he said he was a :
master acupuncturist...
that he did help me...
that he spent his whole life fighting injustice and what had i done?...
that i had my head stuck between my tail and wouldn't get better until i faced my fears...
and on and on. this from a 'healer'.
i wrote him back a long, logically stated and eloquent letter. i never mentioned the lyme diagnosis.
he sent me back the letter with a note saying :
"i never read the letter... if you spent as much attention and time developing your body as you have your mind you would be healthy."
lesson : ducks are bad but they don't quack the loudest
ps :currently my brother is trying to drag me to another 'healer'. he wants to pay so i 'must' go and be duped again.... lesson : i'm a sucker.
[This message has been edited by mcpucho (edited 12 August 2004).]
Dr.#2 (ID) "I have absolutely no idea what's wrong with you, but it will prob. just go away"
Dr#3 (Yet another internist) "I hate when people get medical advice from friends or look up things themselves. People should just stay off the internet" "You don't have Lyme (Negative Western Blot). If I were to give you antibiotics and you started feeling better than you might live your life thinking you had Lyme dx"
Back to Dr. #1 (2 weeks later from above visit) following waking up with a headache that made me think I had had an aneurysm accompanied by blurry double vision:
"Your blood work is fine. There is absolutely nothing wrong with you."
I was referred to a neurologist for headaches and decline in vision. I played the game we all know and dummied up. I didn't offer any info unless he asked and I kept my replies brief. I thought I would see him once, but he kept making return appts. He kept finding odd things here and there and eventually noticed I had swallowing difficulties. He referred me to ENT. ENT found I had no gag/reflex and asked if I'd had a stroke. He also asked if I'd been tested for lyme. The ENT ordered a sleep study because of the paralysis. NOTE: The neurologist USED to be the only doc offering sleep studies in this city until the ENT came along.
Sleep study and MSLT were abnormal per ENT doc and I'm having PVCs. ENT doc already had copy of tests prepared for me to give to referring neurologist the next day. Dutifully handed sleep study results over to the neuro, he quickly flipped through 2 pgs. and said, your sleep study is normal! I think you need to continue to see your psychiatrist for your somatization disorder. (HUH?) The neuro raised his voice more said you have to stop seeing doctors and stop subjecting yourself to all of these tests!
I came unglued.
I yelled, you're telling me I need to stop seeing doctors but you referred me to the ear, nose and throat doctor! I didn't just get a wild hair up my ***, walk into the ENTs office and make my own appointment with him. You referred me to him!
He said, yes, but I referred you for your swallowing difficulties, not for a sleep study study!
I said, you're telling me to stop subjecting myself to tests but you decided to test my parathyroid glands twice, you ordered several blood tests, you wanted to do an EMG, you wanted to do a sleep study, you wanted to test my muscle strength, you ordered a pituitary MRI . . . I listed all of the tests he'd ordered for me.
HERE IT IS:
The neurologist said, Dr. Smith (the ENT) is playing games with me!
I lost it with the guy and said, If you believe Dr. Smith is playing games with you, then you need to take the matter up with Dr. Smith, not with me! Don't involve me in your silly doctor squabble because you're angry with Dr. Smith. I'm the patient and this has absolutely nothing to do with me!
He said, I'm not taking it up with you.
I stood my ground and said, yes, Dr. neurologist, you are.
He raised his voice and said, I am not!
We bantered back and forth a couple more times. I finally realized he threw a tantrum because the ENT gave me the sleep study and HE wanted to do it. Geesh.
Ended up he tried to tell me I didn't have lyme but hadn't ever asked me a single lyme-specific question. He tried explaining to me that lyme is caused by a tick bite. Rreally? I thought it was caused by ducks. Then he told me he was a leading authority on lyme disease in our state. Grrrr. Lyme disease is here now, but people like you are becoming hysterical about it. It's overdiagnosed. People are becoming fanatics about lyme disease.
I had a hardcover book in my hand, Bull's Eye, Unraveling the Medical Mystery of Lyme Disease. A few more words were exchanged and I got so angry I threw the book at his feet. The book went BANG on the floor and the appt. was over. He's my ex-neurologist and 12 days later I was diagnosed by someone else.
P.S. He did write me a follow-up letter and included something about, "the book you so dramatically threw on the floor . . . ."
I was told by the cheif of the hospital
that i had WAY TO
(MANY SYMPTOMS)
for it to ever be lyme disease!!
then he ordered the house nut doc to do head evaluation on me
cause i was crazy!!
but head doc said to him that it wasnt my head,
so then he kicked me out of hospital
ONE MONTH later four positives on test
for lyme and co"s that was two yrs ago and im still sick and now been on iv for 8 month after year and half orals
stupid duck
wack ( quack quack
debbie from warwick
------------------
lyme diease coming to a family near you;;
staring the infamous spirochete;;
with special apperances by
coinfections.
education should never stop.
This has to be the best
"Well...I can tell you that you are clear of any disease or virus....in otherwords...the good news is...you aren't dying."
But....please keep testing....why does my spine swell up when I am exposed to chemicals and mold?
"My ASS-ociate and I are willing to meet with you once a week to help you deal with your pain."
So...you aren't going to keep searching?!?
"No....at this point we are going to just treat your symptoms."
Doctor....kiss my a**!!!
Door closes as I walk out.
Trout
"go home, take a hot shower for the pain and get on with your life"
I stood up and left without saying a word
The second doctor, an infectious disease doc, put me on IV Rocephin, which I had an allergic reaction to after 2 weeks. He did not prescribe another medication saying that the two weeks of Rocephin just needed time to work and it should clear up in a month or so. "Give it time" This came after my complaints of returning symptoms. Obviously, if Im not on a drug, and the symptoms are coming back, then the 2 weeks of the drug wasnt enough!!!!
Have you been sleeping more
Have you been more widthdrawn
Have you been sad?
I was crying every day and didnt have the energy to move.
After telling him that i was diagnosed with
CFIDS and fibro in my teen he said hmmm
then reached for some samples of lexapro and told me that what im suffering is common.
Its SOCIAL ANXIETY DISORDER
i wanted to bash his head in
What the hell did you go to school for.
To be ignorant!!!!!
He always called them KNOTHEAD DOCTORS, but likes ducks better.
At least he got some laughs out of the comments and asked me to send copies to several family members who can't seem to relate to why we have been to sooooooo many doctors to get diagnosis and treatment of his Lyme, babesia, bartonella, Borna virus,
CMV, HHV-6, and nanobacteria.
We have many classic lines to add to this post and I'll add one now and be back to add more in the future.
One classic line regarding another illnes, "YOU'RE GETTING BETTER, BUT YOU JUST DON'T KNOW IT."
Yeah, right!!!
Bea Seibert
[This message has been edited by gonecrazy81 (edited 05 November 2004).]
-it's depression
-lupus
-fibermyalgia
- you shouldn't get your information off the internet
-you have polymyalgia rheumatica (I'm only 40)
-menopause
But the best duck story by far for me was:
My youngest son has had health issues since he was born, among them being heart defects, a hearing loss and growth hormone deficiency. He also has a learning disbility and his IQ scores are very skewed. One day I was on the internet and happened to come across a genetic disorder called Noonan's Syndrome. My son is not a Poster Child for the syndrome but he had a lot of the characteristics that pointed to the syndrome. Part of the syndrome includes puberty delay, so on his visit to his endocrinologist, I brought up my suspicions and since my son was at the age of puberty and showing no signs I mentioned that we should consider treating him for a delay. The doctor just brushed me aside and said, he"s not a Noonan's kid. I was really upset and wanted to put the issue to rest so I took him to a genetics doctor. Again, I mentioned that I thought he had Noonan's syndrome,
geneticists(sp) answer..."He's not a Noonan's kid, but to make you feel better I'll test him for it."
Three weeks later when the lab results come in I get a call from the doctor......He says...."Well, Just as I expected (meaning him the doctor) your son has Noonan's Syndrome"
DUHHHH....Thought you said he wasn't a Noonan's kid
Now the endocrinologist is pissed at me, because I proved him wrong (plus I think he noticed I took great pleasure in waving the report under his nose to prove him wrong).
This duck says that my 14 year old can decide when he wants to get treatment for his puberty delay.
Sure...the kid is going to just beg to start intramuscular injections on top of his daily subcue injections.
Needless to say, that endocrine duck is no longer treating my son.
Thx,
Dave
"I don't think blood work is necessary. Let's put you back on antidepressants"
Doctor 2 before positive Lyme test:
"Are you happy?"
"Are you married?"
"Do you have a happy marriage?"
Doctor 2 after positive test:
"I knew you had Lyme disease. See, I even wrote it as a possibility on your chart. And you know how I knew? Because you are 30 and you have the health of an 80 year old. Three weeks of antibiotics should take care of it. Come back in a month and we'll put you back on antidepressants" (Me: what's up with the antidepressants?)
Doctor 2 (back to see him because of seizures. I fainted in his office and began getting serious tremors):
"Here...breath in the paper bag and get a hold of yourself. You're too excited!"
A nurse at a neurological facility: "A tilt table? Well, I'm not sure what you're refering to...we have a regular patient exam bed..."
LL neurologist called for a complete neurological evaluation at my treating LLMD's request:
"Complete neurological evaluation is $400, but if you have Lyme, it's $700".
He said, "When was the last time you had a breast exam?" Would you like me to perform a breast exam for you?"
I should have said in my best porn voice, "Will it make me feel better?"
My symptoms started to get worse. I started to get a distended abdomen, so again my mom asked my doctor about it. He said, "Do 100 sit-ups twice a day."
Then I developed drop-foot. My mom again took me into the doctor and asked why I walked funny. He told me to walk for him, and he said I looked perfectly fine.
Finally I was really weak and he referred me to a neurologist. That was more than 10 years ago, and I've had many doctors in between
Had IV Rocephin for 10 days. I whispered to the doc: "I think I have a yeast infection in my mouth. My throat really hurts."
She replied, "Antibiotics do NOT cause yeast infections! Stick out your tongue! Nope, no yeast infection."
She walked out the door and I had to see a psychiatrist the next morning.
When I gave my response, he shook his head in a very grave manner.
He said, "Someone your age should be having sex every single day." (I was in my early 20's).
As if a little rumble tumble would solve all my problems!
"The patient may have ALS; MS; Fibromyalgia;Chronic fatigue;ankylosing spondilitis;....I don't think he has lyme disease but I will treat him for Lyme Arthritis.........."
What a MORON!!!!!!!..............zman
------------------
1) Before I knew what was wrong with me, and had multi system symptoms that waxed & waned...one doctor asked, " were you abused as a child?"
2) Most recently on a search for a new pcp: Frazzled looking doctor offered me a job as we walked into the examining room...her receptionist had just quit. Then she looked at my rather small list of problems...and of course at the top was "chronic lyme disease". She immediately looked frightened and said..."you know I have these get to know you appointments so I can reject patients...I am a mainstream doctor."
So I just tried another pcp today...who told me: "oh, I have treated a few "LymeS patients." The knowledgeable "S". There were only two pcps available in the Tricare network in my county... so he is now it. At least he accepted the brochure I offered...the first one said, "I don't have time to learn about it."
Quest
[This message has been edited by CA quest (edited 15 March 2005).]
He also said ALL of my symptoms (muscle aches, twitches, stabbing pains, butterfly rash, electric shock pains, visual problems, memory problems, sleeping problems, etc) were caused by anxiety, allergies, rosacea and sleep apnea. Those were the only causes of everything (all 40 symptoms).
The other duck (my family physician at the time) told me that I wasn't in enough pain to have Fibromyalgia (this was before I realized I had Lyme). Guess she thought I should be crying, writhing in pain, in the hospital and not able to get out of bed (good luck with that when you have a toddler).
And finally, my old family physician that I saw (I was running out of doctors to see) said I might have MS but whatever it was wasn't killing me yet and not to worry - I really needed to get my weight under control. That was more important....
``Maybe you're just tired because you didn't get a good night's sleep or you're a little stressed.''
(Even if I don't sleep well I was able -in the past--to hike 17 miles quickly over a 13,000 ft mountain pass or carry a 45 pound backpack for 10 miles over rough terrain in the Grand Canyon. I'm trying to tell you I was too tired to walk across the room! The only thing stressing me out right now is doctors like you who don't understand their patients!!)
``You need to learn how to deal with the fact that you feel poorly. Here is the name of a counselor that I recommend.''
(If you can't tell a doctor that you feel poorly, who are you going to tell?! I don't need a counselor. I need a doctor who can help me figure out what is wrong with me!)
``If you lived in New York, you would have been tested for lyme right away.''
(Since when is lyme found only in New York??!!)
``You just keep going from doctor to doctor, don't you?''
(You would too, if you felt as poorly as I do.)
``I only treat nerves. If your joints or stomach are bothering you, you need to see a different doctor.''
(Now THAT'S tunnel vision! What if the same ``culprit'' is causing the nerve, joint and stomach pain?)
``If it's not hormones or iron deficiency, I don't know what is wrong with you!''
(Well, how about doing some research to help me?)
``You sure are falling apart. You need a 50,000 mile tune up!''
(I am well aware that I am falling apart, thank you for your assessment.)
``Try deep breathing exercises for the pain.''
(Do I look pregnant?)
``You look perfect on paper and on exam.''
(Then why do I feel so crummy?)
``How about a vacation?''
(Are you going to write a script so my insurance will cover it?)
``If I hadn't known you for the last 10 years I would say that you are a fruitcake!''
(Thanks for those comforting words)
I grew up in CT...multiple bull's eye rashes as a kid and tick bit scars that have flared up regularly for years.
10 years ago I mention this to a world famous MD homeopath, and asked to be tested for LD. I get told that if I had been bitten by ticks in the past I was certainly over it by now.
Next, LD was only discovered in 1977...that was when you graduated from high school, and you didn't grow up in Lyme Ct, so stop being a hypochondriac!
"You read too much."
-Drew
Okay, were they going to come take me to the padded room now? I knew if I let my true feelings show and hit him they would...
At the time I was on IV rocephin and flagyl..I didn't prescribe it, yet he thought ME crazy..He told me I should go to and infectious disease doctor and unless I was actually bitten by a tic that i should not suspect lyme disease and that I did not have ANY neuro problems that he could see including MS and that he did not see a reason to even do any further testing or waste any further time or money on my case. To which later I was told my MRI had multiple lesions and my problems if left untreated would have resulted in putting me in a wheelchair within a matter of months and death within 3 years..
Melinda
I landed in the ER not knowing what a herxheimer was at that point...I explained how I could see my right arm but it didn't feel like it was there and I was having chest pain - along with the myriad of other symptoms I was having - I was asked by the ER doctor to smile after I let him know this vet thought I might have lyme - No Bells Palsy so I was released and told to see a neurologist and that it might take a long time to figure out what was causing the Parathesis "since those neurological issues can be hard to diagnose".
She then discharged me with papers on how to handle stress, anxiety and the suggestion to do yoga which I have been practicing for three years prior.
Turns out I have lyme, babesia, ehrlichia and possibly Bartonella. I can't wait to inform this ER doc...
Their response was "It's the wrong time of year for Lyme".
I guess everyone get's better around Christmas. Right?
"You can't get lyme disease in January."
Turns out the whole family is infected by ticks on our infested Christmas tree.
I was referred to an Infectious Disease specialist in NJ, and when thru my whole list of neuro symptoms with her. She told me that if I had 'Active Lyme' my knees would be swollen.
She then told me to take Advil, since it makes me feel better. When I asked, "So, then it's OK for me to take Advil every four hours for the rest of my life?", she said, "Yes".
I was only 28!!
I've got like 50 of them, but this is my personal favorite...
In a medical center on Cape Cod of all places.. with a huge bulls-eye type rash..
Doc: 'No..No.. it's not lyme. It's Impotigo.. '
Me: 'Doctor, I don't remember the actual tick bite but I am absolutely sure that it is Lyme or something very similar.. this is why....'
Doc: 'It's not Lyme. If there was no tick there is no Lyme'
I stand up turn around & notice a LYME DISEASE AWARENESS POSTER on the wall directly behind where I was sitting! Perfect side-by-side match & even information about how easy it is not to notice a tick bite!
Amazing! lol!
An associate of my neurogist, one who never even saw me comes in takes a quick look at me and picks up a cane, slams it on the trapeze bar on my hospital bed and yells..get up and walk through the halls, there's nothing wrong with you and ran out of my room...duh..I wish I could have gotten up and grabbed that cane and slammed him with it..
My GP Jan '05
"I don't have time for you today, I'm backed-up and have a bunch of other patients to see, and I'm the only Dr. here."
That's the last time I saw him. I then searched the internet and found my LLMD in three weeks, and he made an appointment for me within 3 days of calling his office.
cigi
know what it is with all you California people, you think you all have lyme!"
We switched peds. because she was more like a cheerleader - always superficial and "perky" - than a real doctor.
He was in for his yearly exam which consists of checking his vitals and not much more..she would never be involved in his Lyme treatment or speak to our LLMD. At the time Max was herxing badly, feeling terrible with a continual headache...at the bottom of the form she wrote...
"Healthy boy with chronic Lymes"
How can you even talk to someone like that???
Nancy
When does the rash actually turn green?
(Lime green) I thought, only in New Mexico!
Trails
[This message has been edited by trailsgrl (edited 12 June 2005).]
quote:
Originally posted by trailsgrl:
In 2001 while hospitalized with severe herx reaction to Rocephin, I had a nurse ask me:When does the rash actually turn green?
You have got to be kidding! Boy they were bright!!
------------------
Episode 1:
I was first diagnosed with Lymes at age 13 in 1993, I was hospitalized for a week and put on morpheine for my pain. During my 5 day stay my current doc (who against every other doc I had seen was willingly treating me for Lymes though I had not had a positive test) well he commited suicide. That by itself was tragic, but the quack that replaced him actually said this the very first time I ever met him:
quack: (walks in holding my chart, rifles through it) we're discharging you because you do not have Lymes, you're completely fine except for the fact that you have numerous mental problems and that you need to be admitted to a pyschiatric ward to deal with them. I'll talk with your parents about it as soon as they get here.
me: (who is under 16 and by law quack should not be discussing any treatment with me w/o my parents who were not there) (as I was on morpheine I didn't care what was going on or how I behaved soo....) ***k you I want another doctor. I am sick. I have Lymes. I need to have my mom and dad here right now. I want you out of my room now.
nurse: (quack had called her in becuase of my "distress" as he called it) what do you need?
quack: give her a shot to calm her down and then discharge her
Needless to say my parents filed a huge complaint that even today still sits on said quacks record. The nerve!
Episode 2:
Now 15 years later since my first bought with Lymes it is back and has been here the whole time...I was never fully over it. I have yet again been through the rig-a-ma-row of 5,000,000 quacks that all say the same thing; although there was one I was not expecting.
Days after waking up one morning almost blind, (this was the onset of my obvious signs that Lymes was back in my life) I sought the advice of an opthomologist quack....visited her 3 times within 3 weeks, desperate to regain my vision. Each time she did normal tests, etc...all came back normal. So the last time she saw me she looked at me and said:
quack: have you been fighting with your boyfriend?
me: no everything is fine
quack: (looks at boyfriend whos with me) do you fight a lot? have you noticed her behavior change? do you think she is depressed?
boyfriend: (looks at me like "are you kidding?") no changes everything is fine really she just can't see anymore
quack: (back to me) you were recently promoted at your job right?
me: yes but I love my job and am good at, there's no problems there at all
quack: well I can't find anything wrong with you and I have discussed your case with a colleague and I think you have what's called "hysterical blindness". you see a counselor right?
me: (starting to cry) yes but that has nothing to do with..
quack: (interrupts) you should focus on more therapy and deal with your mental issues and depression. you have "hysterical blindness" and the only one who can make your vision come back is you.
me: (now sobbing) I can't deal with this again. This happened to me as a kid, no one would believe me and now you won't either. I need a doctor who is willing to help me and you are not that doctor by far. (abrubtly left her office, went to receptionist desk and made it very obvious that i was unhappy with quack and needed to talk to her supervisor) Also put an official complaint on her record as well. The nerve...like I want to be partially blind!
Episode 3-
Finally am seeing a neurologist who can interpret my MS looking damage seeen on my MRI's and delayed VEP tests and perhaps shed some light on my situation. On visit number 3 I tell quack that I had been running a temp of 100-101 for the past 4 days. Quack looks at me and asks me accusinly "Why did you take your temp?" I replied "Because I felt hot, like I had a fever." Shouldn't his first question be..."hmmm that's no good, have you felt like the flu...blah blah?"
On visit number 4, 2 1/2 weeks after having a spinal tap done I tell quack that I had been super thirsty and drinking like a gallon or two of water a day for the last 2 weeks. Quack looks at me with disdain, "Why are you doing that?" I'm like what? "Because I was thirsty". Quack replies, "Well don't do that it's not good for you." So I say,"How do I deal with being so thirsty? What is causing it then?" Quack says: "Just don't drink that much water. Be thirsty, it's not going to hurt you."
Last time I saw him I brought in my symptom journal. He looked appalled. I read him off all of the things that had been going on for each day, and there were lots. He looked at me and began the speech I had been dreading, that we have all heard "Well some of that is important to know, but most of that I think is you just being too in tune with your body, (is there such a thing? I don't think so) too conscious of it. I think you are just very wound up about this whole thing and need to relax. I'm going to give you this rx for Impramine to help you be less anxious, and I want to talk to your therapist. Also I think you can go back to work now, things seem to be resolving themselves and the medication will help even more. Just come back and see me in 4 months and we will redo the MRI's and if we see more brain damage then we can diagnosis you as MS."
This was incredible to me as I had just told him that my arms and legs had gone numb and tingly for a whole week, seizures, tremors, episodes of falling down, speech impairments, vision issues had worsened, and the headaches now were unbearable and so much more. That was the last time I saw him, and when I got the positive Western Blots back from my LLMD that were done at Ingenex I sent him copies!
Thanks for sharing all these stories...they are really good to hear so that we all know we weren't alone in the hypochondriac cave!
------------------
"Be joyful in hope, patient in
affliction, and faithul in prayer." ~
Romans 12:12
"I don't have time to keep up with the regular diseases! How do you expect me to have time for something like Lyme!" "Besides, I haven't had a vacation all year because my malpractice insurance is so high!"
Kindof makes you NOT wonder why malpractice insurance is so high!
------------------
Internist, Infectious disease MD at University hospital:
"Even though your Western Blot came back still positive for Lyme, you were treated with antibiotics for 9 weeks two years ago -there is no way you can have Lyme now. You will just have to accept that this is a false positive and you have MS or fibromyalgia"
Found an LLMD after that one!
------------------
Me: I can't see out of my right eye anymore (28/29 years old at the time). It happened over a 12-day period.
Quack: How do you know you can't see out of the eye? That's right. How do I know I cannot see out of the eye??????
Me: Well, what do I say to this? I had to paid $150. to him before he would see me(Ophthalmologist). I was living in Canada at the time. Dealing with the limited amount of doctors and red-tape.
Quack: Well, the only way to know what's going on with the eye is to TAKE THE EYE OUT OF YOUR HEAD AND DISSECT IT. The only problem is we couldn't return the eye back in your head(my only problem). However, this problem isn't your eye your need to see a Neurologist.
I won't even tell you about the neurologist he referred me to. After 8 months, I was finally able to see a good Ophthalmologist and neurologist. I wonder if I could have had a chance (to see out of that eye) if I didn't wait so long.
quote:
Originally posted by bigmamma:
You have got to be kidding! Boy they were bright!!
quote:
Originally posted by bigmamma:
You have got to be kidding! Boy they were bright!!
I had called her one day because i thought i had a seizure while driving...while i was dealing with the oil heat guy she called and my sister answered.
My sis says "korinne, dr.k is on the phone" i get on the phone and the doctor says to me "well thats pretty bad that your family knows me by my voice on the phone already"
I guess she never heard of caller ID.
Another time is... i was in her office and she was thinking that i could possibly have a tumor in my pituitary.
So i asked her while she was writing up the perscription for an MRI...."what are the symptoms of a pituitary tumor?" and she says "im not going to tell you the symptoms because you'll be back in my office the next day saying you have all of the symptoms of a pituitary tumor."
Belive me there are many times where i just wanted to smash her head against the wall The famous words i would always hear was "korinne, what am i going to do with you?"....
well i dont f-ing know, im not the doctor here...shouldnt you know? lol
those are my doctors stupid phrases.
~korinne~
I finally told him, "If you don't do something I'm going to slip into a coma! All I do is sleep!!!"
He said, "If you don't quit complaining I'm going to write down chronic fatigue." Like that was a threat?
I said, "Well, write down something!"
Thank GOD I found my doctor.
quote:
Originally posted by Korinne21:
My doctor said very many things to me but heres 2 things.I had called her one day because i thought i had a seizure while driving...while i was dealing with the oil heat guy she called and my sister answered.
My sis says "korinne, dr.k is on the phone" i get on the phone and the doctor says to me "well thats pretty bad that your family knows me by my voice on the phone already"
I guess she never heard of caller ID.
Another time is... i was in her office and she was thinking that i could possibly have a tumor in my pituitary.
So i asked her while she was writing up the perscription for an MRI...."what are the symptoms of a pituitary tumor?" and she says "im not going to tell you the symptoms because you'll be back in my office the next day saying you have all of the symptoms of a pituitary tumor."
Belive me there are many times where i just wanted to smash her head against the wall The famous words i would always hear was "korinne, what am i going to do with you?"....
well i dont f-ing know, im not the doctor here...shouldnt you know? lol
those are my doctors stupid phrases.
Wait, want to write one more thing. When i had come up positive for lyme disease in august of 04' the neurologist had actually tested me and never told me i was positive until i found out on my own.
When i had faxed the results to my doctor she supposidly called an infectious disease doctor and she said to me "Well i cannot treat you because you only have 2 reactive bands on your western blot and you need 3 or more to be positive."
While my ELISA was positive and i had the 30 kda band and the 41 kda band....I demanded to be tested in 2 months and she said i was negitive....i later found out i was actually positive and the PA department of health had contacted her with a letter asking if she was going to treat me for lyme's disease.
I actually found that one out today, i got all my medical records in hand. My dad says to me "why would someone do that to you?" ...i dont know dad i really dont...she obviously did not care.
~korinne~
I took this to mean it was serious. And it explained why I have felt the way I have for, oh, 15-20 years.
When I met the dr. (he was a new one, I hadn't had before) He greeted me with - Hi, I understand you have Lyme. Do you have a tick bite for me to look at?
"if I'd get bitten that often I would really dislike ticks."
He thought Lyme made you ill for like 2 weeks or a month, so he thought I'd been bitten by at least 60 ticks over the years. Truth is I've only discovered a tick on me twice in my life, and the one that caused Lyme I never even saw. My EM was in my neck so I guess I must've overlooked that one.
The neurologist was the best -
Husband says "I was being treated for Lyme Disease just when this started - could it still be that?"
Neurologist says "Oh come now, I really don't think so - what do you think?"
Husband should have said "You're the b---- doctor being paid to do the thinking!" but he is far too polite.
Brodiemac
I went to walk in clinic because I had a sore throat and cough and wanted a strep test. During the history part I told the doctor I had lyme disease.
He knew very little about it and I felt it my duty to educate him (at least a little). I just started spouting all kinds of useful information.
After a few minutes of this he said to me, "You know an awful lot about lyme disease. WHY do you know so much about lyme disease?"
I went on to explain that I knew I had it for a year or 2 and had been through some treatment and thought it was a good idea to learn as much as I could about it.
Then he said, "You shouldn't read so much!"
(I didn't tell him I was running a support group and active in another. Who knows what he would have done if he thought I was encouraging others to read!)
"Don't try to argue with idiots. They will bring you down to their level and beat you with experience."
Which reminded me of another one.
When I moved to florida, I was very concerned with finding a LLMD. I came from an area that was endemic and had quite a few.
So, I sat down with the phone book and called a bunch of doctors' offices (rhuematolgists, neurologists and even IDs) to see if any treated lyme and how they would treat.
After a few days of this I hit on a rhuemy that sounded promising. I promptly made an appoinment and had them request my records.
I was on tetracycline at the time and she said to continue with what I was on. (It wasn't helping and I was feeling worse but I did for a few months.)
When I felt so bad and knew I had to do something I asked what else we could try; she seemed flustered. (She sounded willing to treat but had no clue how.)
Then she comes out with, "You know I have patients that are in much worse shape than you in wheelchairs, etc. that are working full time."
I ran from her office so fast. She didn't understand the first thing about lyme disease nor did she hear a word I said in those months. (Like I would have chosen to live on pennies a month and be sick and in pain because it was a great deal.)
I called all over the country until I got a referral to my present LLMD. Heh, my disability review papers came a few days later. I can't say enough about good timing.
Please note: Stay away from the rhuemy-duck S. in Boynton Beach Florida.
quote:I got that same reply! Son's of *****es, honestly.
Originally posted by kaos:
Doc said, "You have Post-Lyme Syndrome and your symptoms should resolve within 3 years on their own."
quote:When my daughter was starting treatment and herxing out of her mind, I printed off this entire thread, put it in a binder, and we would take turns reading it.
This is a Really good thread and someone should make a Book out of it- Seriously -
quote:I had a similar experience east December in the midst of my horrific Lyme crash.
Originally posted by btmb03:
"Go home and have a glass of wine"...!!! What the...??
quote:So where did you go to fill it? At the sole (soul) pharmacy in town?
Originally posted by BoxerMom:
"You need a soul retrieval."
Actually wrote me a Rx!