Topic: New Poll: What's the most outrageous thing a doctor has actually said to you?
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
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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
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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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Lyma Bean
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Member # 1914
posted
I went to one of the leading dermatologists, in my area, with my bulls'-eye rash. She dx'd some kind of fungus and staph. When I developed arthritic-like sx, three months later, I did my own research, and discovered lyme disease. I called her office and was told that my rash was too big to be lyme disease and that if it were, it would be more like hives Posts: 1405 | From Plano, Texas | Registered: Dec 2001
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posted
A neurologist I went to when I started feeling worse had this little bit of wisdom, but it wasn't said in verse. "Your PCR is negative, your MRI was good, are you sure you're really feeling bad? 'cause everything looks good. I don't think lyme's your problem, here's a simple remedy... every morning, for an hour, do the martial art tai chi."
[This message has been edited by Jack Lemonlyme (edited 29 December 2002).]
Posts: 39 | From Lancaster PA | Registered: Dec 2001
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Cheryl
Frequent Contributor (1K+ posts)
Member # 75
posted
OHMIGOSH, I can't believe how many clowns everyone here saw! It is outrageous! There is an epidemic of moronic doctors! Is it contagious? I considered posting some of my own, but I'd be here all day!!!
Cheryl, an ``awful'' patient who doesn't blindly ``obey''
posted
Our (former) family physician said, (after being told that my son had several tick bites, and hearing us explain what were Classic Lyme Disease symptoms, and seeing not one, but two large bright bulls-eye rashes) "I know you think this is Lyme Disease, but, the thing is, we don't even HAVE Lyme Disease in Tennessee."
Posts: 26 | From Tennessee | Registered: Oct 2002
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posted
While in the hospital being treated for a collapsed lung which occured when they put in my Hickman cath to start IV treatment for Lyme, the neurologist called in as a consult told me "There is no such thing as Lyme at all, it is just a form of mass hysteria!!!!" After going untreated for 8years because of ignornace in the medical profession, I firmly asked him to leave my room.
Posts: 65 | From Verona, nj, us | Registered: Sep 2001
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posted
I went to a neurologist when my hands were numb with numbness that would radiate up my arms. My toes were numb and numbness would at times radiate up my legs. My private parts were numb. I had tingling, stabbing, pinprick sensations that moved around my body but were often on my tongue or around my face. I felt like water was running down my leg when there was none. I thought ants were crawling on my arm when there were none.
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.
posted
I haven't been on in a while so I missed the beginning of this poll. What a great idea ! The worst thing drs have said to me are....
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.
posted
My first neuro told me my vision problems were do to eyemake up. when i told him i have symptoms without makeup he said nothing. when i told him about tremors (which were bad that day) he said i was nervous because i was at a doctors appt. i told him i have them when not at the docs, again he did not relpy. tingles according to him were anxiety and he didn't believe i was having pain because i wasn't in tears. in the end he blamed it on being female. i'd really like to do nerve conduction studies on him.
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.
Posts: 46 | From central new york | Registered: Oct 2002
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lymebrat
Frequent Contributor (1K+ posts)
Member # 3208
posted
Hi Everyone
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
TX Lyme Mom
Frequent Contributor (1K+ posts)
Member # 3162
posted
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.
posted
Let me count the ways.. those axxholes said dumb things. Okay, it's august 1999 and i'm stuck in the hospital. These are only three examples of stupid things ducks did... i have countless more. So, I'm lying there with tubes coming out of my chest for two months.... no, not for IV abx, but for plasma exchanges... they vampired me twice a day for two months... i had an autoimmune reaction called tpp. so, someone is kind enough to bring me a laptop, i start doing my homework on pub med, plus which i have access to the hospital library, and sure enough, paper after paper spits out with the link between ttp and tickborne disease, as well as a slew of other microbial etiologies. so, i mention it to every duck who walks into my hospital room. but guess what they say? they refuse to look at the papers (from respected med journals, if you please) and then they insist that ttp has no underlying microbial cause... or if it did, the culprit has long been cleared out of my body... but then they give me an AIDS test, just in case. (TTP is more frequent in AIDS patients..) That's one of the dumb things. earlier on, another dumb thing was when they failed to dx me with TTP. instead, they insisted that i had ITP, which is much less dangerous. well, someone gave me a harrison's which is this med encyclopedia, and i'm there trying to make sense of the hematological section, and i've got my chart in front of me, and i keep seeing that in my chart, there's something called LDH (lactate dehydrogenase, i.e. the byproduct of hemolysis) which is boldfaced cause it's about triple what it should be. then i look at the harrison's, and it specifically says that with ITP, LDH levels are normal. so, all proud of myself, i go find a resident and point out this discrepancy, thinking how grateful they'll be that i've ruled out a patently incorrect diagnosis.. yeah, right. instead, the resident tells me it's against the law for me to read my chart, and he moves towards me with hands outstretched and then puts his hands around the harrison's .. the exact quote was, "We'll take that from you now," at which point I slam my hands down on the harrison's and reply, "No, we will NOT take that from me now." So he calls another resident, and they confer, and they both approach me and tell me it is illegal for me to see my chart. Foolishly, I believe they can't both be mistaken, or worse, lying. I recount the story to a nurse later that night, and sure enough, he tells me that under NYS law i am entitled to see my chart as often as i damn well please. other dumb things include sending a priest to icu to see if i wanted last rites... that one didn't thrill me.. after i tracked down a ttp specialist in nebraska who has had success treating ttp patients with doxycycline alone, without the addition of the steroids and plasma exchanges they so often use to treat ttp, i suggested this to my hospital hematologist, and he replied, o no, doxycycline is very dangerous. i hate them i hate them i hate them. those fokkers almost killed me. by all means, everyone, eat duck for dinner.
Posts: 234 | From nyc ny u.s. | Registered: Jul 2001
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posted
I guess this is a never ending poll! Can contribute some nice ones...
"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."
Posts: 33 | From Europe | Registered: Jul 2002
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cayce
Unregistered
posted
I've been told by more doctors than I can count - we know that your sick, and it probably is some virus that we dont know about yet - because there just simply isn't any health condition that causes all of the symptoms you have! Once I started researching lymes - I have all but 4 symptoms! SO FRUSTRATING... still waiting for appt. with llmd, and hoping for treatment!
[This message has been edited by cayce (edited 11 January 2003).]
posted
my doc said: " we don't have lyme here". She sent me to a dermatologist because she didn't know what the rash was, but she was sure it wasn't cancer. The derm said: "I think it's capillaritis". He gave me some type of anti-inflammatory topical creme. The rash continued to grow and the only thing the creme worked well on was my sunburn! I went undiagnosed for one year after that...until I changed docs.
Posts: 239 | From Evansville, IN | Registered: Oct 2000
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posted
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.
Posts: 8430 | From Not available | Registered: Oct 2000
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posted
Went to the quack primary care in eastern LI the tick capital of the world with positive elisa and western blot, bone inflammation, pain there are no words to describe, fevers, thyroid failing and was told you are upset about 9/11. I started to cry, I thought I had bone cancer and he rolled his eyes and said "so what do ya want some codeine". Left and went to StonyBrook lyme clinic the specialists; Was told the 100mg doxi I had taken a yr ago had cured my lyme and I was just depressed and all my symptoms were auto immune (eyes , thyroid , bones and liver)......just depressed I was 41 and could not walk had bone scans showing such severe bone inflammation the orthopedic surgeon thought I might have osteo osteoma and had not slept in months due to the pain and was getting constant nose beeds from all the anti-infammatory medication. quack quack
Posts: 50 | From NY | Registered: Feb 2002
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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. :-)
posted
I think what's happening is that patients aren't willing to take everything doctors say as gospel.
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.
Posts: 749 | From New Hope, PA | Registered: May 2002
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posted
hey, lou, bargrafx and richtersl. here's another story to curl yr hair. i have a friend, a gym mate, who happens to be an RN. So the nyc quacketyquacks take out a few calcifications and one lump and diagnose her with breast cancer. the next step, they say, is to whack the breast and take a mirror biopsy, which is the mirror image spot in breast B of where the lump in breast A was found. my friend goes to another institution for a second opinion, and the duck there looks at the first duck's report, performs a cursory, disinterested exam, and says, i agree completely. fortunately, a friend steps in and insists that my friend fly down to MDanderson in texas. she does so, and she sees a radiologist who left the nyc institution where my friend was first seen and went to texas because, and i paraphrase third hand, she couldn't stand lying to patients any more. apparently, the nyc ducks are covering their waddly white tails. so the texas docs tell her that yes, her cells are abnormal, but they're not cancerous, and at this texas institution they think that women who have never breast fed can live with this kind of cell for the remainder of a normal length life, and would my friend like to be part of a study to that effect. ten years have gone by, and my friend, now 56, is fine. moral of the story: 1) quacking in unison; they all agree with each other in nyc without even examining the patient thoroughly because they all belong to the same club. 2) the ducks in ny are afraid of lawsuits so they overdiagnose (this is a possible interpretation) 3) the ducks in new york don't know that this type of cell may not lead to cancer (another possible interpretation, highly likely in light of the fact that we all know that ducks lose their literacy upon graduation from med school as evidenced by their inability to read up to date med journal articles or patients' charts...) best, ilona.
Posts: 234 | From nyc ny u.s. | Registered: Jul 2001
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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....
posted
Oh, I feel human again, yet the pain and disease is still with me....I haven't laughed so hard in awhile....I think we are all going to the same doctor or either they are all going to the same University to get their PHD's....I have been to so many that they tell me my symptoms don't make sense because they aren't routine....what the hell is ROUTINE? I also asked one doctor if maybe it was allergies...please find what is wrong I can't give up and I can't make it ....he turned around and reached in his medical cabinet and said....YOU THINK YOU HAVE ALLERGIES?????.....here take this ALLEGRA and threw an armful of sample pills in my purse while I sat on the table looking at him with tears streaming down my face.....I also was told TEXAS doesn't have lyme disease......PHD=partial hearing disorder (only hears what he wants to)
Posts: 18 | From Texas | Registered: Jan 2003
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posted
In my case, I even told the doc that "I KNOW we have Lyme here, because I used to work at the County Health Department!" She still said we don't have lyme here! Oh, yes, I also forgot to mention, that I'd already had it documented that I'd found tick by a night clinic doc because I was experiencing flu like symptoms about one week later....the rash hadn't appeared yet. I reminded doc of this and she still disagreed. When I changed docs, he asked me who told me we didn't have lyme here. When I told him --- he was shocked!!! He and the female doc that had told me that had done missionary work together in the past! Posts: 239 | From Evansville, IN | Registered: Oct 2000
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posted
I forgot the last rheumatologist diagnosis....she walked in my room poked my arm with her finger (no other test mind you) and said you have fibermalagia(sp?)....then looked at my chart without examining me and said...how old are you? any kids???? when I said yes three....SHE IMMEDIATELY looked up over her glasses and said WELL THAT IS certainly enough to make you feel this way....I WAS FURIOUS (MY family have been my strength thru this NIGHTMARE) if I had bad kids I wouldn't of mad 6 yrs of HELL....when I started to cry she said WHAT DO YOU WANT ME TO DO???? THIS IS AN OVERPAID EDUCATED MEDICAL DOCTOR asking ME what she should do....When I left her office I could barely walk down the hall to give the nurse my papers....do you know what I left with ....SLEEPING PILLS....she said I needed sleep ...this is how she feels when she pulls an oncall shift.....GO FIGURE....I wish I could make an appt. with some of you before wasting my insurance (which thank God I have wonderful insurance).....have a good weekend....this site has really lifted my SPIRITS....while I fade fastly physically...
Posts: 18 | From Texas | Registered: Jan 2003
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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
Posts: 281 | From Pleasant Grove, UT | Registered: Nov 2002
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posted
To the top.....Please! Any new readers need to know that they are not alone in this nightmare. I just "met" a new Lyme Mom, through a mutual friend, and she too is experiencing what many of us have in trying to get help for her son. In a odd, sad kind of way, this helps to to laugh at it and realize there are many others who KNOW that we are not IMAGINING this horrible illness. There really is Lyme Disease in _________ (fill in the name of your state).
Posts: 26 | From Tennessee | Registered: Oct 2002
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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?
Posts: 548 | From Diagnosed 2003 | Registered: Jan 2003
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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
Posts: 37 | From California, USA | Registered: Jan 2003
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posted
Supposed LMD doc in K harbor, Michigan, I can't treat you unless you have a positive test. Internist In Maui,"I'm from Michigan,and an expert on LYME, You do not have it, you tested negative on Elisa, 6 months after bite an dhaving two doses of abx. I gave him internet info from DR. B , he threw it back at me, "I don"t need this crap". I said, what if I do have Lyme and you don't treat me, meaning, I'll sue your ass off. He went and got me a prescription for Doxy, 100 , three time a day and I walked out and reported him and changed docs. My Hmo said, why do you come here if you think docs are bad, I replied that my husbands company paid for the insurance, That's why. ID doc in Maui,You don't have Lyme, your chances of getting Lyme from one tick bite (in Michigan) are rediculous. I asked him if he would tell a teen age girl she couldn't get pregnant from having unprotected sex just once. He than askd me If "I needed to TALK TPO SOMEONE?". I told him I was physically sick, not mental. Later found out from a pharmacologist sent over from Oahu, that they had written in my chart to NOT give me abx for Lyme. He told me to go to mainland, treated me for Fibermaglya and chronic fatigue, low immune system, low magnesium, shall I go on???? If I could sue, I would! BIG QUAKS over there in Hawaii, that's why we moved.
Posts: 137 | From somonauk , Illinois | Registered: May 2001
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caat
Frequent Contributor (1K+ posts)
Member # 2321
posted
24-bit; "I once went to a doctor that didn't know what to do, so he referred me to the Lymenet board for treatment!! No, that didn't happen, I'm just kidding. "
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.
Posts: 1436 | From Humboldt county ca usa | Registered: Mar 2002
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tabbytamer
Frequent Contributor (1K+ posts)
Member # 3159
posted
Okay, I've got one.
(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.
Posts: 2098 | From San Diego, CA, USA | Registered: Sep 2002
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posted
To the top
Posts: 546 | From Cascadia subduction zone | Registered: Mar 2002
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Annie Fannie
Unregistered
posted
When my doctor told me that chronic Fatigue is not a part of Lyme Disease! Could have fooled me, the only reason I finally went to the doctor after 8 months of being tired. I could barely keep my eyes open when driving and needed a nap every afternoon. So if it wasn't for the chronic fatigue I still might be undiagnosed.
[This message has been edited by Annie Fannie (edited 24 February 2003).]
posted
After the moving pain that goes to large joints settled in one ankle so bad I couldn't walk, my ortho guy referred me to a specialist.
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.
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
I like Hopkins approach... it is on their web site!
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!
posted
After my bloodwork came back positive for Mycoplasma Fermentans, HHV6,CMV, Clamydiae Pneumoniae and Trichosporon Sacchyromac the doc looked at me and said "You can't have all these infections you would be really sick!"
------------------ ~Kristina~
Posts: 173 | From Long Island ~ New York | Registered: Mar 2003
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posted
pre-diagnosis(1992): "well, you might of had mono, but you don't anymore"
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.
Posts: 4 | From highland park, nj | Registered: Mar 2003
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
up
Posts: 20353 | From The Moon | Registered: Jun 2004
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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.
Posts: 115 | From Oakland, CA USA | Registered: May 2003
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posted
Gosh I haven't laughed this much in years...crying too because this is truly very sad for all of us, but not to be alone is a drug in itself.
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
Posts: 125 | From Burlington, VT USA | Registered: Apr 2003
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posted
Ok...this is great..it helps to see that we all have the same things happening...
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????
posted
OMG - I'm amazed at these stories! I know I wasn't the only one these things happened to, but I had no idea....!
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
Posts: 42 | From Ridgway, PA USA | Registered: Nov 2002
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posted
I was unable to get up from the sofa and my Dr told me I needed to work out at the gym every day! Another Dr told me I was just trying to get out of work and needed a good kick up the backside.20 years on ,he's one of Britains top A.I.D.S specialists - wonder what he tells his patients these days??? I'm still considering a brick thru his window!!
Posts: 35 | From switzerland | Registered: Apr 2003
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posted
A friend suspecting she had Lyme went to an infectious disease doctor. He said, "There's no Lyme in Florida...it seems it is just the latest FAD this year".
posted
I went to the head of ID at a local hospital. He said....well.....he'd take some more tests. They came out negative, and he said, "if you really want, I'll give you a month of doxy".
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??
Posts: 186 | From Metrowest Boston, MA | Registered: Mar 2003
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posted
Lishkas mom here (I am on her puter...and dont remember my password) The most interesting things drs have said would include, but are not limited to your 8 year old daughter has recurrent flu syndrome and growing pains, I asked, "what is the difinitive diagnosis for recurrent flu syndrome? He responded there is not difinitve, but thats what she has. WEll could she have lyme, she was bit by a tick, followed by spiked fevers, rash, then began having recurrent encehpalitis...should we check for lyme? No. lyme doesnt exist. Its just a catchall, he replied.
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.
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Like I should be scared??
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