Topic: New Poll: What's the most outrageous thing a doctor has actually said to you?
matmemom
Unregistered
posted
Rheumatologist who is an "expert" on lyme disease told me that the presence of lyme in my blood work was proof that I did not have lyme. My lyme titer was 1.44 and I had 4 bands positive. He told me that this indicated I had lyme antibodies and was immune to lyme. He then told me I was doing myself a great deal of harm by not going to a neurologist.
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matmemom
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OH, I forgot to add that as he was telling me to leave his office after I questioned his "diagnosis" there hanging on his door was an article written by Dr. Allen Steele.
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heckyeah
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Member # 603
posted
I had a classic EM rash ~1990 but doc said it was a "bee sting." I told him that I had had a bee sting before and this was NOTHING like that. So he said "ok, then it's a spider bite."
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.)
------------------ Jen
Posts: 1082 | From Upstate New York | Registered: Jan 2001
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tree
Unregistered
posted
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.
Starphoenix
Frequent Contributor (1K+ posts)
Member # 2402
posted
I recently began treatment, and I've had Lyme for 17 years. I've heard so much ridiculosity in that time! Three recent events come to mind. My now-former PCP, who was wonderfully supportive when she thought I had Lupus, scoffed at the possibility of Lyme and even went so far as to wonder if I was sick at all! She thought I may be sick because of all of the medications I've been taking. HELLO! I told her that I've been sick for 17 years and taking meds for two. I was given meds because I'm sick! I couldn't believe she would question whether or not ANYTHING was wrong! She thought changing my diet and losing weight would do the trick. My new, soon-to-be-fired, PCP doesn't believe in the PCR result! Even though I've had the Blot (not technically positive, but positive nonetheless) and a positive blood PCR, he wanted me to have another Blot. He didn't believe it. He had so much erroneous information. He wouldn't argue about it. (Of course. I was right!) He even questioned my respiratory diagnoses and thyroid diagnosis (like "can you say 'hypochondriac'?"). I was in the ER the other night. (Our apartment building is loaded with mold--long story--hope they condemn it so they have to move us. We're low income and can't just find another place right now otherwise, and no one in power is taking it seriously, it seems.) I'm concerned about having an invasive mold infection (been here awhile, didn't know how bad it was, am on steroids still after Lupus diagnosis because of weak adrenals, have been on oral chemo during the time here, and have Lyme and both restrictive and obstructive lung disease), but the doctor said I read too much! When I asked about Aspergilliosis, he said, "You don't want that." Another one thinking I'm a hypochondriac! No, I don't want it! I'd sure like to know if I HAVE it, though! Steph
[This message has been edited by Starphoenix (edited 15 July 2002).]
Posts: 1318 | From Shohola, PA | Registered: Apr 2002
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Ann-OH
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Member # 2020
posted
I had a doctor tell me I read too much. I told him I had a license to read - a Master's degree in English. Ann - OH
Posts: 5705 | From Ohio | Registered: Jan 2002
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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
Posts: 443 | From Santa Rosa, Ca USA | Registered: Jun 2002
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posted
-"You just want to have Lyme because it is in vogue!" (like cancer????????????)
-"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?
posted
First of all, I really feel we need to see the humor in this...somedays, you need to really look hard, but it helps.
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.
Posts: 36 | From Akron, PA USA | Registered: Jul 2002
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posted
On my 35th birthday a doctor said..."your symptoms are weird...could be MS, have a great weekend." Needless to say, I didn't have a great weekend or birthday!
Posts: 188 | From Highlands Ranch, CO | Registered: Oct 2000
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posted
I am sooooo glad to know that there are others living in my parallel universe!! Let's see, most of these (but not all) come from the head Rheumatologist at a well respected university teaching hospital that "followed" my daughter waiting for an autoimmune disease to fully manifest itself enough to put her on Pred... "She doesn't have Lyme - she doesn't have the hot,red, swollen knees" "A positive IgM doesn't mean anything, especially since her symptoms have been going on for longer than a month, it's not a very accurate test and besides her IgG was negative (only 3 bands)if IT was positive, now that would be a TRUE positive..but it's not so it is something else causing the IgM postive...let's retest her in a month..." "There is no Lyme in Georgia so that makes the positive IgM immediately suspect"
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....
------------------
quote:I have..many promises to keep, and miles to go before I sleep..
Robert Frost ...and every Lyme mom out there who fights to advocate for her child..
Jessiemacmom
Posts: 65 | From Ga. USA | Registered: Apr 2002
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henson2
Frequent Contributor (1K+ posts)
Member # 463
posted
The rheumatologist who said: "Everyone has trouble getting up in the morning. Who wants to get up and feed the kids their oatmeal?"
(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.!)
arg82
Frequent Contributor (1K+ posts)
Member # 161
posted
Okay, here's mine. I went to a walk-in clinic because I was having trouble breathing. I tell the doctor, "I can't take a deep breath" and he tells me "well, you don't need to take a deep breath." --Annie
------------------ "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
Posts: 2184 | From Rochester, MA | Registered: Oct 2000
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posted
An ID Idiot Duck said "I think you have MS because my sister has MS". By the way, I just got retested by PCR, and it was Positive on the first try at MDL in NJ. Yippy!!! Now I can go back to the VA and show the idiot he was WRONG!!!
Posts: 65 | From My Mother | Registered: Oct 2000
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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!
posted
as far as duck's and amusing physicians... i hate to say this, but all authority is going "down". this is a sign of the times and neither good nor bad. while it is important to keep your head about you, we are -thru this list- as important as even LLMD's in this fight. the 95% of physicians in lyme will always be way behind us in information. the hard thing for us is to find ways of testing and authenticating the information. i went to a colorful shrink years ago and in the course of conversation he said ". If i still treated my patients from what i learned in medical school, they would all be dead by now." point is: med school maybe minus 5 years AND med school teachings 10 years beyond that. so, med school is at least 15 years behind the current situation. we are now in a situation of rapidly evolving current information where the problem is weeding out the unreliable.
Posts: 3 | From ithaca, ny | Registered: Jul 2002
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caat
Frequent Contributor (1K+ posts)
Member # 2321
posted
I should be doing something else- but this thread is hilarious.
""-"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"
------ 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. ----------------
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).]
Posts: 1436 | From Humboldt county ca usa | Registered: Mar 2002
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posted
Everyone, All these stories are sadly funny. If laughter could cure us, we would all be cured after reading these ridiculous conversations with doctors. Someone does need to edit them and print them up in a pamphlet. The last story reminds me of a skit I saw on the Carol Burnett Show. Unbelievable! SandiB
Posts: 991 | From USA | Registered: Aug 2001
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posted
The response to this poll has been really incredible. I found myself shrieking a kind of twisted "aaaagh!" as I got to the "punch line" of almost every one. We really should do something with this- I don't know what though, but let's think...... I see a really dark black humor in the circular nature of all these people being "invalidated" by these authority figures who are being paid to heal them. (Joseph Heller's novel "Catch-22" comes to mind.)
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!
Posts: 424 | From Houston TX | Registered: Jun 2002
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posted
My doctor told me "I don't have time to answer questions - if you have questions, sign up for a class somewhere". He was not joking!
Posts: 111 | Registered: Aug 2001
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posted
oh man i just gotta get my 2 sens in here: the MOST outrageous thing that was said to me was not said to me but SCREAMED at me by one of the most well respected ID docs in Montreal:
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
Posts: 246 | From montreal, & a west coast island | Registered: Mar 2002
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posted
to the top
Posts: 982 | From Florida | Registered: Feb 2002
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rosespetal
Frequent Contributor (1K+ posts)
Member # 571
posted
All of these responses are after 3 blood cultures, 30 blood tests, triple phase bone scan, 6 day stool tests: #1 PCP-Manic depressive #2 PCP-brain tumor #3 Allergist, PCP, Dermo- Aids #4 PCP, Endo-MS #5 Allergist, Immunology specialist- Lupus #6 PCP-dunno, you were tx for lyme, maybe it's post lyme syndrome #7 ID- even if you still had lyme, you're allergic to cephalosporins, you can't be treated, don't worry about it Spinal tap showed higher antibodies in CSF than in blood, non LLMD insisted IV abx..
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
posted
Oooh oooh, I've got some good ones! 1. When discussing recurrent vag. yeast infection: "Just try to keep that area dry" 2. When I was 19, w/o any diagnostic tests to confirm: "You have endometriosis. You'll probably never be able to have children" 3. From the school infirmary nurse practioner after several weeks of nausea and intense right abdominal pain and a negative pregnancy test: "It's just a touch of the stomach virus" (yeah, a very localized virus) 4. From my former pcp after this nausea and pain continued for another month, who didn't see me himself but called it in from the hallway: "It's probably just endo" 5. From my current pcp after my first Lyme test (drawn the day the rash showed up) came back negative: "It just doesn't make sense to keep you on antibiotics if your test was negative"
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
Posts: 9 | From CT, USA | Registered: Jul 2002
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posted
Ok, after being bit, I wasn't given antibiotics but I was told just wait to see if you get a bullseye rash. Then the next day trying to get some antibiotics anyway and I overheard...."Boy, is she a piece of work, she won't give up on the antibiotics, let's just get her out of here."
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.
------------------
Posts: 937 | From Seattle, Washington | Registered: Mar 2002
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
I believe most who answer this poll have grounds to sue. You're going to have to pay for the long term treatment and the ducks might as well contribute, especially since it's their fault.
posted
I went to the family doctor knowing that I had Lyme Disease (since I had the bullseye rash and my arms and legs were in pain).
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
Posts: 494 | From Michigan, USA | Registered: Jul 2002
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Sue vG
Frequent Contributor (1K+ posts)
Member # 3143
posted
Boy, I can't come close to some of the -er- amazing affronts y'all have endured, but a neuro said to me last year (pre-Lyme dx),
Kathy Boss
Frequent Contributor (1K+ posts)
Member # 3062
posted
1st doc said I had shingles. I asked than why are they on each side of my body and not located on one side. She said "your lucky"
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).]
posted
Psychologists got hold of me once. They told me I was healthy and I shall focus on the therapy. When talking to my therapist, she once said: ,,You're trying to argue consequential. You won't come far this way." If you're not nuts after years of illness, give a try to a Freudian psycho-analysis. I promise You, Woody Allen movies get a whole new dimension.
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).]
Posts: 37 | From Southern Germany | Registered: Dec 2002
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posted
My LLMD after 2 years of treating me "in case I have lyme" and now has stopped treating me said...
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"
Marz
Frequent Contributor (1K+ posts)
Member # 3446
posted
Most outrageous quote from a rheumatologist I was referred to (and will never go back to): After examining ALL the joints of my body, he made the observation that most are very flexible except for my knees and neck. (he called it hypermobility--which I already knew--I am flexible, but not to the extent that I can turn myself into a pretzel!) He said people like this often have joint aches inferring that was my problem--not Lyme's. At least when I pointed out that I didn't have any pain in the flexible joints--mainly in my knee and neck he was very quiet!
There was some justice--one of my test results came back showing that I had had LD.
posted
Okay..hold on to something and try not to scream..My ex-MD asked as he was listening to my heart.."Is that a black teddy you have on under your clothes ?"
Outrageous..I froze up, I didn`t know what to say or think. growls
Posts: 236 | From Knoxville, TN | Registered: Oct 2002
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posted
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
Posts: 66 | From Dutchess County, NY | Registered: Aug 2002
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posted
I was told LOTS of different things...... all of which I had read of above! I don't know of many cases who have been accurately diagnosed and treated for Lyme on their first visit to the doctor. It took me MANY appointments with 14 of the BEST doctors in TWO COUNTRIES!!!!!
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!
Posts: 712 | From Ottawa, ON, Canada | Registered: Sep 2002
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AZURE WISH
Frequent Contributor (1K+ posts)
Member # 804
posted
hi. i had one dr tell me to throw away all my meds i would never get any better i had fibromaylagia (sp). he said antibotics do not work after the 6th week.
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!
posted
Allen Steere is not LL nor are all the ducks with his mindset. To use the term LL with these types is likely to cause confusion in the less LL among us.
TX Lyme Mom
Frequent Contributor (1K+ posts)
Member # 3162
posted
I'm thinking that we should print this topic out and enter it into the minutes of the next CDC/NIH Advisory Committee Meeting on CFIDS, probably next month in DC, following the biennial meeting of the American Association of CFS, to be held Jan. 30 - Feb. 2 in Virginia.
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.
just don
Frequent Contributor (1K+ posts)
Member # 1129
posted
World famous reumitoligist; You only have some OA in your hands. OA does not travel around the body therefore the pain you think you feel in your elbows is not OA or RA. They are fine, no sign of arthritis of any form.( Couldnt bend it to my mouth)Right elbow and right handed. reumy: Good for you if you cant feed youself cause your elbow wont bend, cause you need to lose weight anyway. I am not that overweight, maybe 20 #s. I dont have six-pac abs but not obese either. Two weeks later when an Ortho Dr. scoped my elbow and removed extensive arthritic roughness and bone spurs. He said he never saw any thing like that, That I really had early onset osteo-arthritis and I should have both my wrists fused at once including my hand bones. Nothing else was going to help. And to go on disability as soon as possible. Okay fast forward to dxed lyme: Why does IV Clafron make them feel wonderful?
Posts: 4548 | From Middle of midwest | Registered: May 2001
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posted
A doctor in Michigan told my father it would be better if I had AIDS rather than Lyme Disease.
Posts: 1 | From northern WI | Registered: Apr 2010
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bpeck
Frequent Contributor (1K+ posts)
Member # 3235
posted
The following is a true story:
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.
posted
before my lyme was dx i was sent to see a neurologist at nemc in boston.my left leg was totally numb,had no feeling and i couldnt lift my foot up off the floor (dropped foot) i hab burning fire pain,was extremely weak all over and my bones hurt felt like my insides were rotting. when nervve conductiom tests showed nerve bamage he said it was caused by my rapid weight loss of over 100 lbs.he says muscles and tendons shifted and i damaged the nerves by crossing my legs . when i asked about the cause of all my other symptoms he told me to stop stressing myself out and wrote me a script for valium.can u believe this guy thought my problems were from crossing my damn legs ? what an idiot!
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
Posts: 96 | From SALEM ,NH,ROCKINGHAM | Registered: Sep 2002
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posted
The most outrages for me is quite a few 1.You had lyme disease at one time but do not have it anymore. 2.we can not give you antibiotics they will kill you. 3.Lyme does not cause lesions in the brain. 4.I think you had an attack for 91/2 years and went into remission,I still think you have ms but you do not have seconday progressive you have relapsing remitting ms. 5.Do your legs swell 3 times the size?If not you do not have lyme even though had all symptoms but 2 for lyme. 6.It is cause you have ms is why you think you have a pain in your ear. 7.Heart palpatations is cause the ms is tricking your brain to think you have them. 8.You have to live with it. 9.Lyme disease ir rare. 10.No you can not go see him wanted to see an infectious disease doc who was lyme knowledgeable he would not let me go see him cause that guy believes everyone has lyme,had hmo insurance and needed a referral 11.There is not enough proof lyme is passed on to the fetus no I will not test him Posts: 125 | From southington | Registered: Jan 2002
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TX Lyme Mom
Frequent Contributor (1K+ posts)
Member # 3162
posted
I just created a new topic in the General Forum and I want to link these two topics. Please take a look at the topic entitled "Anyone Want to Lobby on Lyme at CFS Conf. in Jan.?" Here's the link: http://flash.lymenet.org/ubb/Forum3/HTML/007141.html
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.
posted
The md in the hospital who was to sign off on my first dose of rocephin refused to. He wrote a letter to my doctor saying that rocephin was no longer used to treat lyme. And that I should see Dr Sugar at the Cape Cod Hospital if I really wanted to get better. Sugar is Siegal's plant here from Boston...the dr didn't look at my orders nor talk to me, just refused me and walked off. The nurses all reported him. I came back a few days later when the coast was clear and got my rocephin... Also a local GYN asked me if I had been someplace exotic to catch Babesia. (aka: Nantucket Disease) I said no, just here on Cape Cod. She thought I was nuts.
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posted
Here we go: "You are not sick. You are stressed b/c your Mom is pushing you to finish college" ... (which she wasn't!! ... and I loved college and I wanted to go and finish ... so ... WRONG ANSWER!!!) Another dr. told me "You just need to eat better." Yea, ok buddy!!!
Posts: 265 | From Stamford, Ct, USA | Registered: Jul 2001
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