posted
I'm sure this has been done before here; but it could bear updating, probably. After reading the Faces of Lyme comments on the Open Eyes site, I started thinking how I would love to see a compilation of the ridiculous things doctors have said to lyme patients. Wouldn't it be fun to expose them?
If you are game, share your experiences with us. Here is my list:
"You can't have lyme disease. You look too good!" (Probably the most common)
" I worked with lyme disease at Fairfax Hospital this summer, and I can tell that you don't have it"
" Yeah, you and everybody else in Fairfax County thinks they have lyme disease!"
"How could you have lyme disease? It's January!"
"You mean the two of you (parents) go off and leave a 16-year-old to lie in bed all day??" (Same ID specialist who made above comment)
"All they produce are positives" (Referring to IGenix lab)
"Borrelia is not a spirochete" (This was a gastroenterologist at JH in Baltimore. When I took documents in from NIH and CDC calling it a spirochete, he became very angry, refused to take the documents, pretty much told me that if this was the direction I wanted to pursue, I needed to look elsewhere. Still not sure what "direction" he was talking about)
And the general comments I have seen in print that make my blood boil:
"It is a designer disease. Everyone is trying to get a diagnosis" (Clearly they don't know anyone who has it)
"People are shopping for doctors". How can anyone trivialize our desparate search for relief by using such terms?
Can you top these??
Posts: 422 | From Herndon, Virginia | Registered: Oct 2005
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Andie333
Frequent Contributor (1K+ posts)
Member # 7370
posted
I went into the doctor's office for Qwest lab test results. I had difficulty driving to get there. My vision was blurry; my thinking impaired.
I was walking with a decided, noticeable limp, unable to straighten out my right leg, my knee searing with pain. I was panting and exhausted. My face was flushed.
The so-called ID specialist greeted me with a smile:
"Great news," he said, "You're fine!"
Posts: 2549 | From never never land | Registered: May 2005
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mlkeen
Frequent Contributor (1K+ posts)
Member # 1260
posted
After a positive Elisa and neg WB and lots of symptoms, told "You can't possible have lyme you aren't sick enough"
My son after a rash, herxing on abx for broncitis, regarding a WB CDC positive " A strange combo of bands, so it's not lyme"
We both tested positive early and were denied treatment by PCP.
Posts: 1572 | From Pa | Registered: Jun 2001
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bettyg
Unregistered
posted
yes, you are right; there is a post with countless good responses on it here...Bettyg
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savebabe
Frequent Contributor (1K+ posts)
Member # 9847
posted
My doctor actually told me, "to get a boyfriend."
Posts: 1603 | From ny | Registered: Aug 2006
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TheCrimeOfLyme
Frequent Contributor (1K+ posts)
Member # 4019
posted
1.) You can't have lyme disease. If you did, you would be laying on the floor screaming in pain right now.
2.) Babesia? did you get bit by a dog?
3.) Lyme? were you petting deer?
4.) Your migraines are caused by chronic congested pelvic syndrome. You need to master.. you can figure it out. I reported THAT doctor to the medical board.
5.) Young white girls like yourself get MS all the time. You need to prepare your Will.
6.) You have one too many kids. ( This doctor basically threw me out when I said, "Well, what do you want me to do, put one of em back?")
7.) Admit it, your boyfriend beats you.
8.) You're under too much stress.
9.) You're not experiencing the symptoms you say you are.
10.) Are you on cocaine. Yes, I was asked that.
-------------------- You want your life back? Take it. Posts: 3169 | From Greensburg, Pennsylvania | Registered: Jun 2003
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trueblue
Frequent Contributor (1K+ posts)
Member # 7348
posted
duck at a walk-in clinic I went to for a strep throat (in a majorly endemic area): How do you know so much about Lyme disease?
me: I've had it for a while so have done a lot of reading.
duck: You read too much!
A hemotoloduck, I went to for a consultation on another matter, while taking a history,... "Lyme, so what do you treat that with, steriods?"
-------------------- more light, more love more truth and more innovation Posts: 3783 | From somewhere other than here | Registered: May 2005
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hiker53
Frequent Contributor (5K+ posts)
Member # 6046
posted
At a well respected LLMD's office last month.
Dr. "Do you know you have an increased risk of breast cancer. We should test your hormones."
me "I am here to talk about Lyme treatment and do not want a hormone test. I will deal with breast cancer if I ever get it."
Dr: "You are too thin. You should avoid all sugar, eat only one piece of fruit per day, avoid starches, eat fish and vegetables."
me "Yes, that is why I am too thin." I am not here to talk about my weight. I am here to talk about my lyme treatment."
Dr: after looking at Igenex tests. "You have so many bands that meet the CDC criteria. Serious case of Lyme."
me: "I would like to do some physical therapy to gain some strength. Will you write me a prescription for physical therapy."
Dr: "You need a diagnosis for that."
exasperated me: "What the *&#$ do you think Lyme is?"
Me: "I think I have yeast. See, my tongue is all white."
Dr: Maybe. It's been nice meeting you.
GRRR. I will not go back to Dr. M in Fond-du-lac.
-------------------- Hiker53
"God is light. In Him there is no darkness." 1John 1:5 Posts: 8916 | From Illinois | Registered: Aug 2004
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posted
Here are a few of mine: If you still have symptoms after 3 weeks on antibiotics, you must have something else!
Take 2 aspirin,drink tea and see how you feel tomorrow>
and this same MD told my friend when she was pos with lyme "Don't worry, why don't you go to the beach.!!!!!!"
-------------------- To win this battle, make the time for exercise and fitness activities! There is no shortcut to any place worth going! pegee4 Posts: 59 | From Hamptons, New York | Registered: Aug 2006
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posted
Too Funny! You got my morning off to a great start!
Posts: 422 | From Herndon, Virginia | Registered: Oct 2005
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Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
"Probably just growing pains." - many, many docs
"One of your legs is longer than the other, that's why your knee is swollen." - an ID doc when every blood test was negative
"You need to consider finding a job that doesn't use a computer" - to me at age 27, because my wrist pain didn't get better after 9 months in braces and on NSAIDs
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
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posted
Pins and Needles in hands and feet. Was told by emergency room doc "You must have been hyperventilating, yes...even though you don't remember....you must have been"
Was told by rhuematologist (even though I did NOT ask)...."there is NO SUCH THING as Chronic Lyme you know"
Was told "you need to get a hobby"
Was told by Neurologist at Columbia "If you gain 10 pds probably all of your lyme symptoms will go away" .."and eat more salt".
Was told by internist "I don't think it could possibly be Lyme, I think you have AIDS". (I don't)
-------------------- Corinne Posts: 529 | From Raleigh, NC | Registered: Jun 2006
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kelmo
Frequent Contributor (1K+ posts)
Member # 8797
posted
Primary Care to daughter/patient: "When is the next time you see your psych?"
Infectious Disease: "I'm putting all my money in this is a latex allergy"
Any and all of these docs to mother: "Is there stress at home?"
Posts: 2903 | From AZ | Registered: Feb 2006
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posted
Have a Rheumy who always remembers me "because you have that Lyme Disease connected infection I can't pronounce". I was positive for Babs and negative for LD. Of course, LD can't be considered by the VA since I wasn't positive ya know.
Or how about the Primary Dr of mine at the VA. When I questioned about my red palms, a Medical Student in the room pipes up and says "It's because you're so very white". Dr didn't blink an eye or say a thing. Both are African American btw.
-------------------- Toodles, Sal Posts: 195 | From Tampa, FL | Registered: Sep 2001
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posted
He wouldn't say it to my face, but my PCP told my partner's son "There is no Lyme Disease in Vermont."
An ID specialist didn't believe I had Lyme disease (despite bullseye and symptoms), but she was happy to push Lexapro on me.
Posts: 449 | From Vermont | Registered: Nov 2004
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cantgiveupyet
Frequent Contributor (1K+ posts)
Member # 8165
posted
At the ER last September- Its just a sensation that you cannot swallow........try to eat, go out and buy something that you REALLY like to eat.
There is no way that your throat and eye problems are connected.
November ER visit.....after CT scan of stomach, was told nothing was found on scan. your frequent urination is normal....Im going to refer you to a GI dr.
Opthamologist appt- complaining of sensitivity to light- well, people with light colored eyes are normally more sensitive to light.
Im going to refer you to a neuropthamologist....its a long wait but your symptoms arent life threatening.
-------------------- "Say it straight simple and with a smile."
"Thus the task is, not so much to see what no one has seen yet, But to think what nobody has thought yet, About what everybody sees."
-Schopenhauer
pos babs, bart, igenex WB igm/igg Posts: 3156 | From Lyme limbo | Registered: Oct 2005
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posted
A duck informed me I read too much and should leave the learning to the doctors... and to make sure I stayed away from the internet.
Then he suggested I take a walk at the zoo. I told him I would make sure I went by the monkey cage then end the visit at the duck pond. yikes...
Posts: 106 | From Texas | Registered: Jun 2005
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posted
I forgot a couple, when duck was testing me for RMSF right after a bad tick bite. Because I know ticks in my area can carry Ehrlichia (since my dog has had Ehrlichia canis and Ehrlichia equi), I also requested a test for Ehrlichia. Duck says... "Ehrlichia and RMSF are the same thing". I tell him they're not the same. Duck says he'll look it up in his 'book', then says... "How do you spell Ehrlichia".
That test showed I was positive for Ehrlichia. Two weeks of Doxycycline later, I still have symptoms so I go see a duck who says... "You can't have Ehrlichia anymore. My 'book' says Ehrlichia is cured after two weeks of Doxy. You must have post-infectious disease syndrome. The treatment for Ehrlichia is two weeks, so that's all we treat. If you still have symptoms you'll just have to live with it."
Posts: 106 | From USA | Registered: Aug 2004
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posted
neurologist when I was hospitalized last year, telling me that Mri signal abnormalities not to worry. A lot of people have them.
Posts: 719 | From Delaware | Registered: Jan 2006
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Ann-OH
Frequent Contributor (5K+ posts)
Member # 2020
posted
My favorites:
One doctor told me "You read too much" I answered, "I have a license to read - a Masters Degree in English."
Another said: "There's not much in the literature about that, is there?"
Neuro Doc: Her sister just had open heart, and you experience migraines, she is just doing this for attention.
My daughter: Is he saying I am making it up or crazy mommy?
Me: Yeah, but he is an *** , lets blow this docsicle joint.
(This doc became head doc of neuro pediatrics at St. Raphaels after insulting my daughter. I was able to straighten his act out).
IF Doc: (whose boss wrote and published an article on TBRDs that is akin to what we experience). Why did you come here. What do you want. There is nothing wrong with you.
Me: I am sick, I have TBRD, as evidenced by this bulging manila envelop full of positive test reports.
I am here to experience the doc patient relationship, I am sick you make me betterer.
As for nothing wrong with me, I am bleeding incessantly from PICC line, perhaps you might take a look as the PICC sterile dressing has floated off.
She left room
ER Doc: You are fine... (after I asked for second opinion from real Doc and western blot run), we do not do follow up blood work here, you need to get out.
-------------------- wpcj, Cyn Posts: 20 | From Virginia Beach, Virginia | Registered: Aug 2006
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lymednva
Frequent Contributor (1K+ posts)
Member # 9098
posted
When entering the third weekend in a row with a combination of air hunger and shortness of breath due to dysautonomia, I finally broke down and saw my primary duck.
His verdict: "You are hyperventilating due to anxiety."
Me: "I am not feeling anxious, this happens at times when I am answering the phone, talking to a friend, opening up the window shades, etc."
Duck: You must be worried about getting a call you don't want."
Me: "I have caller ID."
Duck: "If you continue to have this problem I can refer you to a pulmonary specialist."
Then I really lost it and told him I had suffered from hyperventilating due to anxiety and that was not what was going on at this time. I went on and on. Never went back to his office again!
-------------------- Lymednva Posts: 2407 | From over the river and through the woods | Registered: Apr 2006
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posted
Told me a story about a medical student who thought she had every disease she read about in the Merck Manual. So, don't read and worry, was the message to me. Do they say things like this to cancer patients too, I wonder?
Told me that thin people live longer. This was in connection with my pointing out recent and rapid loss of more than thirty pounds.
Too many other dopey things said to list them all. This thread subject has been an ever popular one over the years of lyme forums. Apparently docs don't think anything said to a patient is out of bounds. Really, it is a wonder that more doctors are not punched in the nose.
Posts: 8430 | From Not available | Registered: Oct 2000
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geniveve
Unregistered
posted
went to llmd and complained about the shortness of breathe, trouble breathing,etc.,
posted
Here's my most interesting and at the time, was closest to the truth (in terms of dx)
Visiting orthopedic Intern: ( Funny look on face). " Is it possible you have syphillis?"
Me: " I don't think so, I have been with my husband for 17 years."
Well, i now I know I don't have syphillis but I do have spirochetes. I was not the least bit offended by the question because i realized he was really listening to me. He seemed very perplexed. Perhaps if he had been the "real doctor", with some reflection he would have figured it out!
I have some other doozies.
i wonder if these docs swap weird patient stories (about those that they never followed up on)
Posts: 208 | From Santa Fe | Registered: May 2006
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posted
MY DOC SAID WELL IF YOU DID HAVE IT (BULLSEYE AND CONFIRMATION AFTER THE FACT)BUT HE SAID IF YOU DID HAVE IT 2 DAYS OF 100MG DOXY WOULD HAVE KILLED IT RIGHT AWAY AND YOU WERE ON IT FOR 14 SO YOUR REALLY GOOD, THAT LEG PAIN IS PROBABLY MORE OR LESS AN IRRITATION OF SOME KIND OF AN OVERWRKED MUSCLE.TAKE SOME ASPIRN IT TURNED INTO NOT BEING ABLE TO STAND OR WALK ON THAT LEG FOR A WEEK BEFORE HE PRESCRIBED 30 MORE DAYS. W/CONFIRMED BLOODWORK. Posts: 5 | From Pa | Registered: Sep 2006
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Nal
Frequent Contributor (1K+ posts)
Member # 6801
posted
These are great. Sad that they are making me laugh but ridiculous at the same time that we have to put up with this crap.
Lets see.....
1.. You are stressed because you just moved here to VA and you don't know anyone yet.
2. You have somata form disorder-here's some Ativan (from a neurologist)
3. I think we should send you up to the mountains of Colorado (where he knew I was from) and see if the altitude will knock this stuff out of your system
4. My all time favorite: "You are suffering from Military Wife Syndrome...these are tough times to be in the military right now. Plus you just had a baby." I asked him to show me the literature on Military Wife Syndrome so I could look it up.
Coincidentally the dr that made the last comment was fired a couple months (this was in a military hospital) because several women filed big complaints on him. Hmmmm, wonder why???
Nancy
-------------------- Life is 10% what happens to you, 90% how you respond to it!
-Chuck Swindoll Posts: 1594 | From Colorado | Registered: Jan 2005
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posted
Wow, what a coincidence. This wasn't something "said" per se by a Dr. However, when I pulled a copy of my last labs from the VA hospital, they had run a Syphillis test on me! I was SHOCKED, to say the least. Of course it was negative. But come on....SHEESH!
quote:Originally posted by jif: Visiting orthopedic Intern: ( Funny look on face). " Is it possible you have syphillis?"
-------------------- Toodles, Sal Posts: 195 | From Tampa, FL | Registered: Sep 2001
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AliG
Frequent Contributor (1K+ posts)
Member # 9734
posted
The PCP duck told me that "having a chemical imbalance is nothing to be ashamed of", when I told him that I didn't think Psychotherapy was the answer. He also said he thought I had sleep apnea. He had me on antidepressants and allergy medication and wanted me to try a sleeping pill.
That was when I went to see an ID specialist, one of the top Drs. in NJ, according to some magazine.
Fax cover sheet from that ID duck to PCP duck:
"She has multiple complaints indeed. Her complaints numbered 20 to 30."
"I have evaluated her by blood smears, stools, as well as eosinophilia and IgE levels, all of which are negative."
"Reommendations: I have told her to consider alternative therapy such as massage, physical therapy and accupuncture for possible control of some of her somatoform symptoms."
When I tested positive for Babesia I was told it was a past infection. The intensive work up he ordered contained no TBD tests.
This one's for you, Carol
2nd ID Dr. with regard to the possibility of my having previously undiagnosed Lyme and still having Babesiosis, "Blah, Blah, Blah" and "Blah, Blah, what they're teaching at all the major universities, Blah, Blah" and "Blah, Blah you don't look sick enough, you would look much sicker, Blah, Blah"
After that my PCP didn't know what to do. Her nurse called me with the negative Lyme test results and told me she thinks I have Fibromyalgia and I should go to a Reumatologist or an Infectious Disease Specialist if I still think I have Lyme.
Needless to say, thanks to you good people here, I had her make the duck call me back and talked her into a scrip for Doxy. Then I promptly found a LLMD (Thanks again!), who told me that I "absolutely, without question still have Lyme" and it's entirely possible that I have active Babesiosis. We're waiting for the results on that one.
So to all the IDSA IDs and ducks out there, I say "Blah, Blah, Blah!"
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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posted
I'm in a somewhat unique position because I'm a doc in a small town, ran our ER for 20 yrs, and have been respected as a clinical sleuth. Long prior to my Lyme diagnosis, but at least 13 yrs into having the disease, I'd seen my pal, our local orthopedist for foot pain, knee pain, hip and back pain, etc. I was and am NOT a complainer. I was a triathlete and everyone figures I know what I'm doing. But, of course, despite living in a densely endemic area, I was blind to the possibility I might have Lyme. The phrase my orthopod used more than once was, 'Jon, you're just 'maturing''.
Uh huh....... yeah, 30 yrs of running wasn't so good for me, I guess(ed).
He's otherwise a wonderful doc and he'd be the first guy I'd go to for a joint replacement, but no one around here has a clue. Now that I'm retired and am not taking care of patients (25 yrs in the ER was plenty), I'm gradually becoming lyme literate. Ironic.......
jon (just maturing....... )
-------------------- ret ER MD (25yrs), lyme 19yr DX 6/06, guitarslinger www.LifePathGuide.com Posts: 28 | From Willits, California | Registered: Sep 2006
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posted
These guys have been told lyme is a zebra, when in some places it is horse. Think this mindset and lack of time with patients leads to snap judgements.
However, some of them also know that lyme is a controversial mess and just don't want to get caught in it too.
It doesn't seem to matter how much or little you have seen doctors prior to lyme, they still can think you make this stuff up in order to hang around doctors' offices. I spent years avoiding all medical things, even fibbed to the college clinic nurse who thought it was time for a booster shot. No thanks. Don't tell me this was stupid. I know it. But I didn't even like driving by hospitals. So, does this influence how I am treated when I am finally forced to go to the medical folks? No. You can have this kind of medical avoidance history and STILL be thought of as a hypochondriac. It is this kind of illogic that is the most mind boggling.
And yes, I know all docs are not this way and medicine does help people.
Posts: 8430 | From Not available | Registered: Oct 2000
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posted
I really think the problems with doctors regarding Lyme Disease is not just their igorance of it, but the fact that their egos, after a certain point, shut down their capacity to solve the problem. When they've exhausted all the easy possibilities (tumor, virus, etc.) they decide that the problem is in your head, not in his lack of problem-solving skills. erg...makes me so mad..
Oh, yeah, another quote I have:
Head Honcho Hospital Doctor: "Are you making this up to skip school?"
It's like, if there's not a huge spot on the MRI, or your wbc is 0, and you're not bleeding, you're fine.
-------------------- -Em
"Thank you, Oh Lord, for giving me the power to control my pain" Posts: 59 | From Missouri | Registered: Sep 2006
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kam
Honored Contributor (10K+ posts)
Member # 3410
posted
Interviewing a possible new primary doc.
One comment was the insurance company will not allow me to talk to you this long.
(note: doc did not ask me my symptoms, what treatment I had been on, how long I have had the disease, etc. He did ask me the same questions that were on the form...relatives have any high blood pressure, heart disease, etc.I was too out of it to really do a good job of interviewing him and just let him do the talking. All I said was will you be willing to work with my lyme doc when he said he did not feel qualified to treat me for lyme)
So sad but it does seem to be the norm with primary docs.
The good news is he is willing to work with lyme doc. I have talked to others that were not and were more interested in proving I do not have lyme and doing nothing about my health.
I kept thinking doctor's go in the medical field to help people get well. Silly me.
There was something else that was said. Hopefully, I will remember it and get back here.
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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posted
My daughter has been unable to walk and onfined to a wheelchair for almost a year due to lyme-related issues. A visiting nurse changes her PICC line dressing weekly. Recently, the nurse told my daughter she'd probably feel a lot better if she just got up and walked around a little bit. (Duh!)
Posts: 991 | From California | Registered: Feb 2006
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posted
At a major University hospital they snickered at me and said many people THINK they have lyme and do not! And my son was going to physic himself out of the pain! It was all in his head!
Yikes
-------------------- Amy Holloway Posts: 255 | From Michigan | Registered: Oct 2005
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tailz
Unregistered
posted
I have MANY. I think I can beat all of you with this one though. Okay, here goes...
I'm divorced and have not been in a relationship because I have been too sick.
I was arguing with my doctor that I've had intermittent cloudy urine, and when they dipped it, it's sometimes been positive for protein. My doctor argued, "SPERM can cause protein in your urine!"...
Can someone please tell me when FEMALES began producing sperm?
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Vermont_Lymie
Frequent Contributor (1K+ posts)
Member # 9780
posted
I am sorry to say that I went to a doctor who was supposed to know about lyme disease with a bulls-eye rash many years ago. I was told that I could not have lyme, because ticks do not bite in august, and they do not bite on arms.
Posts: 2557 | From home | Registered: Aug 2006
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tailz
Unregistered
posted
In a voice you'd use with a 5yo, "Everything comes back normal. It's ALL in your MINDDD. I think you should take 'something' if it is offered (Cymbalta/antidepressant)."
In response to my pointing out my 2mm liver lesion, "Liver lesions 'occur'."
My abdominal CT scan with my colon collapsing all over the place, "Your CT scan was 'normal'."
My eyelid was droopy, "Everbody's face is uneven."
I'm sweating profusely in air-conditioning, "Everybody is sweating today."
I've lost weight, "Well, you can MAKE yourself lose weight!"
My gums are dissolving, "Well, do you use a tongue brush?"
Trip to the ER...resident walks in..."Do you hear voices?"
And my favorite, "I can't be ordering random tests. Your insurance company will drop me."
I'm so happy it's not just me! I thought I was the only one who was actually fearful of seeing doctors, just because I had lost so much respect for them.
What irks me most about all my complaints above is that doctors think so little of me that they think I am UNABLE to distinguish between normal hot day sweat and profuse sweating, for example.
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posted
Comment from Children's Hospital Pain Mngmt Center Head Lady (response to my worrying about a headache lasting 2 mos):
"We have a boatload of kids here who've had headaches for six months to a year"
basically telling me this in a "don't complain" sort of way. I want to scream in her face "WELL WHAT HAVE YOU DONE TO HELP THEM OUT, HUH?!??!" Ugh.. And here I am, almost 2 yrs later and I still have the SAME HEADACHE. It hasn't left, not for one millisecond!
-------------------- -Em
"Thank you, Oh Lord, for giving me the power to control my pain" Posts: 59 | From Missouri | Registered: Sep 2006
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posted
It thought of another one. I had my hair cut and colored. When I went to see my doc he complimented my new hairdo and said since I look good that must mean that I'm not sick anymore.
Reminder to self: do not get a makeover right before seeing your duck.
Posts: 106 | From USA | Registered: Aug 2004
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posted
Extremely itchy EM rash appeared 24-48 hours after removing partially engorged tick from my back. Called Dr. B's office. Was told he is no longer accepting new patients. Went to Dr. B's office and pleaded with receptionist. Showed her my EM. She could not refer me to another LLMD. Called my local walk-in clinic and explained EM rash. After waiting for 4 hours at walk-in clinic to see a doc, I walked out. Totally disgusted. Saw my local Dermatologist who is supposedly a LLMD. He took one look at EM and diagnosed me with Lyme. Here are some of his comments:
PATIENT: "Should we do a biopsy to get more information on my current condition?"
DOC: "No need."
PATIENT: "Blood test?"
DOC: "Nope."
The doctor then told me that based on my fatigued appearance and lack of "vigor" I was obviously sick. Put me on 21-day course of Doryx 100mg2xday. After finishing antibiotics, central pupil of EM rash was still dark red. Called his office and was told this is, "normal."
Every day my fatigue, neck/head/jaw pain increases.
After a week of dead-end phone calls, and e-mails to various researchers at Stony Brook, I have an appointment with Dr. J at Stony Brook next week.
Posts: 8 | From NY | Registered: Sep 2006
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quote:Originally posted by doggiemom: "I can tell just by looking at you that you don't have Lyme" (but had not done an exam)
"You have too many symptoms to have a real disease".
"Lyme disease is not found in Tennessee".
"It's mental. Let's try Paxil for a while".
And way too many more to post here.
/////////////////////////////
yes the first one I could tell you don't have lyme you don't have a rash!!!!!!!! I can tell by looking at you ( Dr. has ESP)
you don't have lyme because you would have gotten better in 28 days
you don't have lymes but MS and why give you medician you don't need antibiotics have alot of side effects (I said and MS meds don't)DUHHHH
MS comes and goes "well how come I said it didn't go before my antibiotics
you are going to Quacks these aren't real Dr's(I said to myself and you are)
the insurance companies know only to cover 28 days cause that cures Lyme...( since when was insuance comapanies real doctors???)
you are only hearing and believing whaT YOU want to you don't have lyme and may be making your self worse ( then I said why am I better)
lyme is only in May lyme is not in december their is no such thing as Chronic lyme theirs no such thing as Nerulogic lyme
lymes doesn't make you unable to walk lymes doesn't give you white markens in MRI scans
It's MS not lyme your test was negaitive ( Quest lab)
we don't deal with Igenex they aren't a well known lab???
You don't have a positive lyme spinal tap so it's MS a well known Hospital said some of these
Heaven help us. Now I can laugh but when I was REALLY sick I believed I could be wrong but I rechecked those Dr's & Websites saved me
now I hear The Dr's I have now aren't real also my blood test doesn't show you have lyme I ( have 3)
you would have a fever and body aches
on and on.boy I feel SO much better I am not crazy and NOT alone
God Bless us lymies United against them
-------------------- I feel like their's corruption with some Doctors about lyme disease Posts: 23 | From Westchester NY | Registered: Oct 2006
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posted
This post is awesome! Here's some of my favorites:
While visiting with an endocinologist, I was expressing to her that I'd been too sick to attend school for several months. She replied "Well, you've got to graduate!" like she thought I was just trying to be rebelious. (duh?)
At the end of that same visit, the endocrinologist told me that she knew a "really good psychiatrist" she wanted to reccommend to me....
After explaining my multitude of debilitating symptoms to a duck and asking what was so risky about just putting me on some abx duck said "you could get a yeast infection!" (oh gosh...I'll risk the yeast infection.)
Posts: 89 | From UT | Registered: Jun 2006
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posted
I needed to laugh! Thanks! I can add things non-lyme dr's said:
When I took a list of abut 90% lyme symptoms checked off to a ped and asked for a western blot b/c the lyme ELISA was negative, "Well that's so rare here I don't think we should test for it" After they tested dd for everything else in the book I thought we WERE looking for a needle in a haystack!!!!!!!
Ped referred to 2nd neuro who referred to ENT, Allergist, and cardio, who referred to Inf Dis to do CFS work up who said he didn't do that (he just did it for my brother!) to go to int med. Int Med dr almost wouldn't take dd b/c she was 17! Had to drop name of a friend who recommended dr b/c he dx her with Lyme! Needless to say I was so excited when we finally got to the appt and had pages of notes to relay to dr. I was nervous I would forget some important piece of the puzzle and talked too fast to not waste his time. He was very nice and wanted to get all the history etc, but at the end he asked me to leave the room so he could ask my dd some ?'s:
Is your mother overbearing...? How about Dad? Are there problems at home? Did you just break up with a boyfriend? Are you stressed out about school? ETC
I actually laughed at myself when my dd told me what all he said! I'm sure I appreared overanxious! He also asked why didn't my dd speak up for herself more. She said she could hardly sit up, much less talk, plus brain fog...Couldn't remember yesterday very well muchless the saga of our search for answers!
ER NON-LYME DR!!!!! You know sniffing glue, whiteout, sharpies etc can cause migraines. SAME DR: When asked for meds in IV instead of shot, replied it hurts less and works faster in the shot!
My brother lost a lot of spinal fluid when the neurosurgeon's nurse removed some leads from his spine in the hospital but left word for his dr, a nephrologist to order some caffeine to help with the spinal HA. His Dr said my brother shouldn't take caffeine because he was dehydrated and had been throwing up and it would upset his stomach. My delirous brother raised up and uttered my dd's name before passing out. You see she had been recently hospitalized and thought to have low CSF (probably from the 1st LP that failed to measure CSF pressure!) and the neuro ordered caffeine & benadryl in an IV to help. When my family told this dr my brother was trying to say that my dd had IV caffeine the dr said he had never heard of that we must be mistaken. The nurse later said she was going to let the dr figure it out on his own, but my brother was so bad off that she called to the pharmacy and sure enough they had IV caffeine in stock and she educated the dr!
Sorry so long winded!
Posts: 242 | From Mississippi | Registered: Oct 2006
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
After being referred to a Pulmonologist due to shortness of breath, I requested a Lyme Disease blood test. He replied "oh you don't have that", then proceeded with about 50 different blood tests that all came back negative. He called me and told me there was nothing else he could do for me and referred me to a pyschiatrist and that he would see me in 30 days. What satisfaction to call and request my records for a new MD as I had a positive WB for Lyme and that to cancel my scheduled 30 day check up as I no longer needed his services!!!! Egotistical, arrogant and ignorant. Working in hospitals for 17 years, there is a pet name for such physicians---------TOADS!!!!! Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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