I'm at my "get to know you" visit with my new PCP, hoping for an open mind on my journey to wellness.

I say "I just simply don't believe Lupus is the ONLY cause for these symptoms. I do not test DNA positive for Lupus, the only thing I have is an elevated ANA and that could be caused by many things".

Her response "The only other thing would be AIDS".

Withing 24 hours my HMO had me switched to a new PCP. They were appalled by the incident.

What are the odds of you being bitten by a tick that has Lyme.....

Duh I Dunno, I only spent every waking moment of my life MTN Biking, and Rock Climbing in the woods of Northeastern P.A. for the last 10 freakin years.

I should have said...

The odds of me catching LYME are better than the odds that you would be able to diagnose it if I did....

May The Force Be With You....

Obi Wan

"I've got your lab work back and everything is fine."

(I was 39 at the time.)
----------
Close runner up:

Me: This medication is making me gain weight.

MD: Medications don't cause weight gain. Eating too much causes weight gain.

Me: But I wasn't having any weight problems before I started taking the medication, and since I started taking it I've gained more than 30 lbs.

MD: If you weren't eating too much you wouldn't be gaining weight. After all, there weren't any fat Jews in Auschwitz.

P.S. I am Jewish.

When my Lyme tests came back positive (several tests from different labs), I told this doc about it. He replied, "We haven't seen a documented case of Lyme in Texas in many years".

When I told him that I had also tested positive for the co-infections babesia and ehrlichia, he made a complete about-face, stating, "Remember, M.S. is still in the differential".

Heaven help us!

Later, a wonderful Dr in New Jersey diagnosed Lyme affecting the central nervous system, causing the dementia.
When we got home, I told the local dr about the diagnosis. I wanted to sound knowledgeable, so I used the medical term Neuro-borreliosis. He looked surprised and asked "Where did he come in contact with barillium gas (sp?)"
Floored, I said, "No, tick bite...Lyme disease.."
He stammered, "OH, I knew that, I knew that."

I WISH I'd hit that doctor -- with a complaint to the state medical board.

Two days prior to the surgery I received a call from a doctor that I had seen to get a
'good physical' before having that surgery.

I was told that I had Lyme.

I cancelled my 2-day-away knee surgery.

Here's the good part...my husband happened to run into my Ortho Surgeon the next day at a local hospital...the surgeon inquired:

"So how did they diagnose that...on a CT?"

I have a two way tie:

#1: My children's EX-Pediatrician: "Most adults who think they have Lyme actually have something else." This was after he had grilled me about why I felt a need to have my daughter tested when she was exhibiting many symptoms of Lyme and my son and I were already being treated for late stage Lyme....I made the mistake of pointing out that not all Lyme patients present with swelling knees.

"you are hypochondriacal"

"you are a healthy young man with psoriasis...that all"

"you cant run a high fever from sinustis"

"small pox vaccines for your children isnt given any more
because the disease does not exist anymore"

"You can have antibiotics for your sinusits
because it is just a virus"...with no
cultures or evidence at all

After my son had monthly vomiting attacks
at age two for eight straight months..."
He gets alot of virus".....turned out to
be childhood migranes

"you don't have lyme - you just need to stay off the internet"
I responded with "how else can I learn - I don't happen to have a medical library in our home"
He says "Your not suppose to have a medical library - that is why you come to me. I AM THE DOCTOR with the education"

And the next time that he just happened to see us he took my husband aside and said:

"I believe that she believes that she is really sick, and I think that I could help her (wink, wink) I could prescribe just the thing to settle her down"

He dismissed all my symptoms that were coinciding with my EM rash as due to stress..but then he asked me what was something that I really wanted lately..something that would make me happy..

I thought for a minute...but was really put off by it..didn't know where he was going with it...and I said that I had been wanting to see Les Miserables in SFran..

well, he wrote a med script out to me and told me to give it to my husband...it said something like "take your wife to see Les Mis"...he said that that would make me feel better.

Duck #4
Me "everytime I go to my inlaws I have to sit away from them or across the room because I feel like I'm going to pass out everytime I am there"
Duck replied "In-lawidus"
I gotta admit it was funny but later figured out since the house is so small it had something to with the oxygen.

I had forgotten the prescription our doc gave my husband in the ER the night that I was there with my chin frozen to my chest!!

And they couldn't get an x-ray cause when they had me stand by the table and start to lay it down, I screamed with the pain.

The xray tech wrote "patient was very uncooperative"

I still have the prescription:

//Jane is to rest on the couch and be fed Bon-Bon on a silver platter by her lousy husband. Her husband is to wash the clothes and dishes, clean the home & take care of the kids.//

stay off the internet is always a good one.

Everyone has that buzzing noise in their head, you've only just become aware of it. Yeah, I believe that.

Doc: "There is no lyme in Chicago. But I know a doctor" (at - blank - Chicago hospital)"who treats lyme."

May The Force Be With You...

"After three weeks of 200mg/day Doxy, 99-44/100% of my patients get over Lyme for good."

This was from the guy who told me that his office has seen approx. one new case per Dr. per day (in the summer months) over the years.

1) Lyme only exists in Lyme, CT. and Babesia only exists on Long Island

2) You have 2 years to live because you have Chronic Mono

3) "you are crazy and depressed, you need a shrink, You dont have Lyme, your western Blot is negative"

4) "You could not have had 70 tick bites at once, thats imposssible!"

5) Oh, those are all neurological symptoms, you better take some Kava Kava.

6) You need steroids for the rest of your life

7) "You need to accept this illness as a part of your life"

8) "Nobody is longer than 10 days on IV for Lyme, everybody gets cured" HA!

9)"It cant be Lyme Disease AGAIN, you already had it." Your Brain MRI shows you have MS.

Me: So who do you go to?

ENT: Jordan is not sick, his mother just thinks he is.

PEDIATRICIAN: Make him go to school unless he is on his deathbed.

ID: If you have Lyme, you will test highly positive. Even if you have Lyme, it is only a nuisance not a serious illness. Two weeks of antibiotics will cure it.

ID: Doctors on the East Coast set up clinics just to treat Lyme and make money.

NEUROLOGIST: All kids have headaches and most of the time we don't know why. They usually are worse during the school year.

GI: Some kids have stomachaches and we don't know why.

PEDIATRICIAN: Could he be depressed? Go see a Psychologist.
PSYCHOLOGIST: Go see Pediatrician because not enough medical tests done.

ID: No reason to test for Bartonella and Babesia in Minnesota.

1. No I won't order a Lyme test, sooner or later the HMO is gonna "ding" me for ordering all these labs" Poor baby, his bonus check was at stake. I work at the hospital and see this boob on occasion. I walk with forearm crutches due to permanant nerve damage and have a PICC line in- " wow, you don't look to good, what's going on?" My answer " some idiot Dr refused to test me for Lyme and it turns out I have it and now I'm screwed for the rest of my life." No reply from the jerk.

I can NOT believe this!!!!!!!!! Especially about the boob doctor. Why are these doctors so dumb? What ever happened to the hippocratic oath they take? It makes me soooo mad all of these stories. Thank God for our LLMD!!!!!!! We would truly be lost without them if not 6 feet under. They are literally saving our very lives.

Liz

This actually happened to someone I used know. Sadly, the outcome was tragic.

Mom goes pumpkin picking with her kids. Daughter has Lyme and was in treatment for it. Sometime after returning home, daughter goes unconscious and into a coma. Daughter is rushed to the hospital where her LLMD practices (about 20 miles away). Enroute, she goes into complications so the ambulance turns around to taker her to the nearest hospital to be stablized because her life was at stake.

At the hospital she was taken to there is a self-proclaimed LLMD who believes that you are cured of Lyme after 28 days of antibiotics. Since the daughter had already been under treatment for Lyme for a longer period of time, the self-proclaimed LLMD poo-pooed the real LLMD's diagnosis and told the mom that her daughter really had a viral infection. Mom pleaded with the doctor, but was treated poorly. Doctor treats daughter with antivirals and daughter is still unconscious and in a coma. To placate mom, the self-proclaimed LLMD did try the daughter on IV antitbiotics and she showed some improvement but he didn't buy into it because "you're cured of Lyme after 28 days" and continued with the antiviral because he didn't believe she had Lyme. She was eventually transferred to the care of her real LLMD who proceeded with aggressive antibiotic therapy. She eventually regained consciousness (don't recall at which hospital that took place) only to be wheel-chair bound and no longer capable of coherent speech. Her mind still worked but she was no longer the same child. She was more like a child with cerebral palsy. The damage had been done.

The daughter passed away from complications several months later. Mom wanted an autopsy performed. I was told that the autopsy revealed that her little body had been infested with Lyme Disease.

So much for the "28 days and you're cured" theory.

..That last one was sad... guess it says a lot about docs these days doesnt it?
------------------
Lishka

[This message has been edited by Amareo (edited 14 July 2002).]

This was in the August 1993 issue - I called them "Infamous Quotations" -

(Ed. note: The following are doctor's comments as reported by the patients to whom they were made. The quoted physicians are all practicing in northeastern Ohio, many at most respected medical institutions. Some are neurologists, rheumatologists or infectious disease physicians; others are pediatricians and family practice doctors.)

"You can't have Lyme Disease in Ohio"

"There have never been any cases of Lyme disease reported in Ohio" (there had been about 400 at that time)

"You don't LOOK sick!"

"It's not Lyme disease, it's LIME disease!"

Doctor: "You don't have Lyme disease"
Patient: "How do you know?
Doctor: "I went to Harvard."

About a child: "She can't be too sick; she's smiling."

"I have no idea what you had, but whatever it was, you're over it now."

"There is no such thing as Lyme disease."

"A hundred years ago, she would have been termed a sickly child."

To a child: "I think you are depressed and need a psychiatrist who will put you on anti-depressants. And you're just going to have to learn to live with it."

"If she doesn't have arthritis, she doesn't have Lyme disease"

"You couldn't have Lyme disease. Lyme disease is susceptible to penicillin and you had 10 days of penicillin in 1988."

"Even if it is Lyme disease, it wouldn't make any difference because there is no treatment for Lyme disease."

[Ed. comment: Do we need any further demonstrations of the need for physician education about Lyme disease????] (end of article.)

How awful that for the most part, the picture has not changed in the past 9 years!!!

In 1996 when I was finally crippled by all my various "stress/over-exercise induced symptoms" and doc sent me to an infectious disease doc who was also a "lyme specialist."

ID Doc said my lyme elisa was positive but my western blot was negative so I don't have Lyme. It couldn't possibly be lyme anyway because I didn't have swollen joints (just excruciatingly painful ones). At this point, he looked down my throat and said "ah ha!! You have Fibromyalgia!" I'm not kidding.

When my condtion continued to worsen and I started having what were apparently petit mal seizures at the wheel of my car (the id duck and the neuroduck wrote in my records that these were "falling asleep"), they did some more testing to rule out epilepsy and MS. When those tests were "negative" the ID duck said I also had Chronic Fatigue Syndrome.

He said to "just go back to work" (at this point I could barely walk at all) and that I "should be glad I [don't] have AIDS." How do you respond to a comment like that??

(I definitely think that Boola wins the Suckiest-Thing-a-Doc-Ever-Said Award with that psycho racist comment.)

quote:

---

Originally posted by Susie Jo:
!!
After six months of being desperately ill, barely able to walk, covered with a rash over my chest,back and face, slung over a chair because I was unable to summon the energy to sit, my long-time family Dr said he was going to send me to Dartmouth-Hitchcock because maybe it was CFS, he really didn't know what I had. Then, with such a smirk, he said You know, of course, what you have is classified as a somatoform illness.

The alternative practitioners were no better, it was just put in "new age" terms that there was some hidden reason for my illness.... psychological, spiritual, some undealt with issue of my childhood, etc. You are sick therefore you have created a defect in some way, blocking your body from its natural radiant state, out of harmony with the universe...blah blah.

---

Dx lyme 7yrs ago pos blood, etc., after 3 yrs oral abx new pcp said "no more abx" due to 28 day rule. You all know the drill...

6 mos later new onset seizures, pcp said, "I think that your problem now is Lupus, "The Great Imitator"

2 yrs later vasculitis shows up on brain MRI, pcp said, "I think your problem now is MS, "The Great Imitator"

5 mos later pos lyme titer on spinal tap pcp said... any guesses, "Just like I thought, you have neuro lyme "THE GREAT IMITATOR"

to which I replied, hey I think I've heard this before somewhere. I know I'm 'a little foggy', but I'm sick, I'm not stupid.

Ok, went to a psychiatrist after 2.5 years of worsening unexplained illness. I begged him to believe that I was physically sick. I said I felt so "desperate" for people to understand, for a doctor to help me figure out what was going on... I said I was not suicidal (have not history or act or intention) or homicidal ("). He said:
"THERE IS NO WAY SOMETHING CAN BE PHYSICALLY WRONG WITH YOUR IMMUNE SYSTEM IF TESTS DON'T SHOW IT." Nevermind he knew nothing of the tests done or anything. IGNORANCE!!!

Then he said, I think you need to be hospitalized in the adult crisis unit. I left before he could degrade me further.

Lastly, my most recent duck before I FINALLY found a wonderful LLMD saw me present with a case of bad tremors in her office. Two nurses tried to hold me down on the exam table to stop the shaking (not seizure). She said "ARE YOU SURE YOU'RE JUST NOT SCARED TO DEATH?" And, then "COULD YOU HAVE EATEN SOMETHING BAD?"

OH my Gosh! These things still enrage me. I have always been so rational and then to have this stuff said to me has made me feel so hopeless and lost. Thank God for my present and only LLMD!!!!

After my 21 months old had several documented bullseye rashes, she sent us to an ID doc.

-"Don't call or ever come in again! Be your own doctor. In 6 or 7 months you should be better."

"How often do you have orgasams? What is the percentage? When you have your movement disorder with your husband, can you stay on the bed? Wow, honey, you look great after losing all of that weight....(while staring at my ample chest....knee to knee and sweating bullets) No I didn't have the energy at the time to report him!

-"you have pseudo-seizures. (Fake seizures) Don't bother to come in again. "Stay off the internet. Get on with your life and stop focusing on what you can't do!"

_"You have had enough antibiotics to have killed a horse ...If you ever did even have LD"

and sooooooooooooooooooo much more duck talk. The stories are amazing...I just might print them out for my neuro!

Take care everyone-we will make it! There are still some good docs out there! Don't lose hope! Shall we all print this out and mail it to some professionals? What's the poll on this one?

Like others.. I have had so many.. wouldn't know how to list them all..

Here is one I was just reminded of..

After a year of feeling horrible... I drug myself to work so when the kids got home from school they wouldn't find me there, dead.

Once there I dropped to the floor I was so weak. One of the hunters took me to the docs office.. I was there when they opened before 8 AM.

By then.. as I laid on the table unable to move... one arm was swollen and completely blue.. and ICE cold.

The other arm was red, sweaty, and HOT!

I couldn't even sit up, my eyes were watering, my head was pounding, I was too weak to speak... the room was spinning... etc. etc...

The nurse practioner.. who KNEW I had been sick for MONTHS.. asked me if I had eaten breakfast yet?

I shook my head "no".

She said if I started eating breakfast.. then I wouldn't feel so bad.

That will be $60.00 please.

Your lists of funny comments just go to show how uneducated physicians are about this. I hope this changes in the future for all of us. I for one am working on this for all of us.

No matter what anyone tells you, educating yourself, on the Internet or in a Medical Library at your nearest hospital is a GOOD thing.

If you cannot talk with your doctor...find another. I find that good communication with your doctor is 80%+ of your treatment.

No doctor can know everything. If they say they do, leave as soon as possible.

I am on leave as a RN that is a patient educator of patients with kidney disease. I welcome the patient to my office that has looked up information...it gives us a place to start, or a place to correct falicies. Even if they are into alternative medicine, I say, as long as it can't hurt you, I would never say never. It is like this with Lyme. There are too many Dr. that are too busy to listen or are afraid to burst their egos...at what a cost to their patients. They have to work WITH you.

Yes, keep track of these comments. One day when the research shows they have it all wrong in the year 2002, wow, they will say, I should have been a better listener of my patients.

Now, I am seeing a great Dr. of Infectious Disease that is trying to get me retreated with Rocephin. (insurance woes). But one neurologist told me only that I didn't have Lyme...no other reason or diagnosis noted,or what I should be tested for and another diagnosed me with Trigeminal Neuralgia... did not even hear me tell about vision problems, joint difficulty...was told that Lyme neurologically only give a Bells Palsy (droopy face) and I did not have Lyme...even though I pain, numbness, weakness...

They need to stop thinking they have to make a snap judgement on the first visit...my doctor now does not do this and listens to what I find in my research.

This was a good one, after 2 days of horrible stabbing back pain when breathing, her ped said she was "over reacting" and I insisted on a chest x ray which she thought
was crazy. When it came back showing pneumonia she said that my daughter "brought it on herself by refusing to take deep breaths...(uh, what happened when she was sleeping???)
"A daily fever of 100 is not abnormal, send her on to school unless it is over l0l.5, she just needs to get with the program..she's depressed"...
"Her labs are mostly normal and her symptoms are so subjective, she must be depressed, I think it's time to send her for counseling
...."
yep, and on and on it goes...so easy to dismiss it all from your office when you are not dealing with it, physically and emotionally, from day to day....

------------------

quote:

---

I have..many promises to keep,
and miles to go before I sleep..

---

(I was 31 and had no children)
(ha ha I guess she hated feeding her kids!)
(Woops, showing a little too much of yourself, Dr.!)

My wife went to her orthopedic doc for wrist pain. He said there is a cyst and go to the Korean plastic surgeon who removes cysts (he has a VERY good reputation!)

This is the truth - the Korean doc told my wife that one of her arm bones is TOO LONG, and that he wants to operate on her, cutting the bone to normal length!!!!!

He said, You haf bone too rong in yo ahm. I gonna cutta bone, den you gonna be in cast fo one yeah. Den you come back gonna feel real good!

""-"Don't call or ever come in again! Be your own doctor. In 6 or 7 months you should be better.
terter"""

Wow. Best advice I've ever had infered to me too...

""Shall we all print this out and mail it to some professionals? What's the poll on this one?

terter""

Oh yes! It should be edited, along with more stories and mass e-mailed (***spammed****) anonomously or with a fake authoritative return address (like harvard med school? JAMA news update?) to every single medical clinic and hospital in the country. All in the same week. Would start people talking.

My favorites-

"it's all in your head"
me- (look to kill)
her- "you need elavil!" (anti-psychotic)

another one- "it's all in your head"
me- (look to kill)
her- "you're aggressive!!!"

"you have a flu"

"your allergic to your shampoo"

------
recently;
1st office visit;

me "I think I have late syphilis, I'm staggering and can't read"

doc "are you sure it's not lyme?"

me- "no. But I'm not sure about syphilis either. those tests are only 70% accurate."

doc "no they're not'
me "yes they are"
doc "no they're not"
me "YES they ARE. Please give me a treponomal test."
doc "no"
me "antibiotics?"
doc "no"

2nd visit
doc- "you were right, the syphilis tests are only 70% accurate. come back next week and we'll test you for both (trepenomal & elisa )."
Me "thank you. you know I found out the lyme tests are only 30% accurate. Can I have a western blot? it's a little better"
Doc "no they're not. No you can't. We don't do western blots."
me- "can I have antibiotics?"
doc "no."

I went & got my own antibiotics and started to treat myself. I also convinced the nurse to do a western blot. They sent it to unilab which doesn't do a full band report.

During the blood draw another doctor came in with wild eyes & yelled at me (yes- yelled) "this (lyme)is new to us. we don't know what we are doing!!!!"
me- calm & polite- "well, that's ok. well, can we send this to Igenix?"
doc "what?"
me "Igenix lab. they have a lot of experience with this."
doc still screaming "NO !!!"
me "they're good..."
doc "NO !!!" stomps out of the room.

3rd visit-
doc " test is neg you don't have lyme."
me "the tests are not accurate, & it isn't a full report on all bands."
doc "yes they are"
me "no they're not"
doc "yes they are"
me "can I have doxycycline?"
doc "no."
me "do you have lyme in this area? ...Do you treat lyme?"

doc "You have transitory viral menengitis. We will wait 6 weeks and see if gets worse. If it gets worse we will do more tests."

me "what?"
doc "something is effecting your 12th (?)nerve. Lyme effects the 8th nerve. It's not Lyme."
me "it's a bacterial infection..."
doc "no it's not"
me "then why do antibiotics make the neuro symptoms subside?" (look to kill. a look like what kind of doctor ARE you?)
doc "they do?"
me "yes. almost immediatly."
doc "oh. antibiotics are an anti-inflamitory"
me "no, it's a bacterial infection"(look to kill. a look like what kind of doctor ARE you?)
doc "OK !!!! I'll give you antibiotics BUT IT"S NOT LYME !!!!"

doc agrees to give 200mg doxy for 4 weeks. She is totally aghast & freaked out. Refuses to write possible lyme in records. I don't what she came up with for the records.... must have been highly imaginative.

me "thank you."
doc yells " I am NOT going to give a clinical dx for lyme."
me "it's supposed to be a clinical dx. not a test dx according to the CDC even. Whether I have Lyme or not, you have other patients with Lyme."
doc- "I hate antibiotics!!" leaves the room in a hurry. she is crying.
----------------

herbalist at same clinic;
"stay off the antibiotics, they will kill you. we can cure this!"

me " which herbs cross the blood brain barrier? do you know?"
herb, looks confused "we can cure you!"
me "you don't know..."
herb (screaming. no, really...)"you are going to make yourself very sick and it will be your own fault" or something like that. He screamed about whatever for about 10 minits. I just smiled at him. It was actually pretty funny. We came out of that room and the whole clinic was looking at us.

that's pretty close to word for word & I think in that order... the entire clinic had a serious nervous breakdown & it was as good as a monty python sketch. And as infuriating. The CDC dragged this area & it has the highest known lyme count on the west coast. And some of the most ignorant doctors.

Do I feel sorry for them? h*ll no. They are killing people by not treating them. they don't what they are doing and are too lame to find out. People are starting to avoid that clinic big time. There is no waiting time there. it's a great place to go for a common cold.

Like the Infectious Disease doctor who told me my fatigue was caused by my sudden post-bite need to take naps.

She then sent me to a Rheumatologist who gave me a 'scrip for a sleeping pill.

The ID doc told me to "Stay away from Lyme support groups, because those people are SO DEPRESSING"

(Can you imagine a doctor saying "Those cancer patients, what a glum bunch of fellows they are!")

The Rheumatologist asked me about 15 questions and seemed vexed that my symptoms were not falling into the RA profile. I said "Well I don't think I have rheumatoid arthritis"

She asked "What do you think you have?"

I told her that my problems had started with a bullseye rash that my primary physician thought was a Lyme EM.

She replied, " Oh no! Not that! You and everybody else WANT to have Lyme these days"

She charged me $350 for her 18 minutes.

me: how many Lyme patients do you treat a year?
ID:
"I DON'T HAVE TIME FOR THIS! I DON'T WANT TO HEAR ANYTHING ABOUT LYME! GET OUT OF MY OFFICE!".

2. "There's no way you can have Lyme cause there's no Lyme in Quebec (yeah, duh, it's not a reportable illness, and doctors refuse to test for it. Of course there's no Lyme here, diagnosed and treated that is)

3.
PCP: You are really depressed.
me: of course i'm depressed. I can't move.
PCP: Have you ever considered having a psych. evaluation done?
me: (in my head)yes, actually, to try and figure out why YOU think i need a psych evaluation when YOu're the one who needs it!

4.
me: (to a tropical diseases dr.)so here in this article you wrote in 1993 you say that the effects of untreated Lyme can be really horrible. So why aren't you willing to treat me?
him: we have very strict guidelines concerning Lyme.
me: I fufill all CDC diagnostic and surveillance criteria for Lyme. What guidelines are you talking about?
him: i'm sorry, i can't treat you.

5.
PCP: well, first i want to send you to do a neuro-psychiatric exam. it'll take about 8 months before you can get in.
yeah, and 8 months later i WILL be demented from Lyme and will NEED it!

7.
ID: you can only get Lyme in Connecticut
(and he has new editions of Emerging Infectious diseases magazines sitting on his desk).