posted
Dr. - "I recommend a psychiatric evaluation"
Me - "So...the antibiotics caused me to imagine I felt worse?"
Dr. - "Possibly. You don't do anything for fun-"
Me - "Because I am sick."
Dr. - "-and you aren't married, you don't have a boyfriend...these are red flags, you have psychiatric problems, not an infection."
Posts: 243 | From chicago | Registered: Dec 2005
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
This thread is priceless.
Here's a few from Neuro duck:
Dripping scorn: "You are Internet doctor."
"Dees are migraines. Ve just need to find your triggers." ( I got some triggers in mind for you.)
"You don't have Lyme. Lyme very rare in California."
"Vot you tink is EM rash just allergic reaction to tick bite."
After being faxed the CDC positive western blot from my LLMD:
"Dis doctor OVERTREATING you. Vot is his name?" (Righteously, as if he hadn't just misdiagnosed me. Barely six weeks into abx with LLMD!)
"If you really got Lyme, all dees brain lesions vill go away."
ME: "No, I think studies say about 50/50 chance."
DUCK: (Emphatically!) "NO! Dey vill ALL disappear if it is Lyme."
Well, they haven't changed in one year, but he'll never get to know, because I refuse to see him any more. He is too pigheaded to read any studies or educate himself. Him and all the other neurologists in the Redding area are the chief reason people think there's no Lyme around here. It's always diagnosed away as something else.
Wouldn't it be nice if doctors put as much energy into trying to find out if you have Lyme as they put into trying to disprove its existence?
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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klutzo
Frequent Contributor (1K+ posts)
Member # 5701
posted
It took me two days to read this whole 9 page thread, and I don't know whether to laugh or cry.
After more than 20 yrs. of illness, I could fill another 9 pages with incidents, several of which would have killed me if I hadn't educated myself by the time they happened. I will just post the one that came closest to causing me to commit homicide.
At the time, I had not yet heard of Lyme, and had been told I had fibromyalgia, after being mis-diagnosed with MS for 4 years.....
Rheumatologist: "Why are you taking up my office time? You have fibromyalgia. It will not shorten your life. I refuse to examine you."
Me: "But, I am so sick I cannot work anymore".
Rheumatologist: "So what you can't work. You're a woman, stay home!"
(I would have got up and walked out, but I was wearing a backless gown. I literally had to sit on my hands to keep from hitting this a**hole).
Klutzo
Posts: 1269 | From Clearwater, Florida, USA | Registered: May 2004
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posted
Although my Mom went to see a doctor for something completely unrelated to Lyme this is a good one...
She went in and had a health concern...I think it was in relation to ovarian cancer...She asked her question in that regard and Dr. Idiot replied, "Well you are going to have to die of something"...
At least he didn't pretend to be someone he wasn't I guess...
-------------------- �Pride is concerned with who is right. Humility is concerned with what is right.� - Ezre Taft Benson Posts: 655 | From NC, Exit 88 on the Deer SuperHighway | Registered: Dec 2004
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posted
from a food allergist "you are young and attractive, stay out of doctor offices" (no, I'm dead serious) she had so more gems to say too:
Her:-your inflammatory test came back negative. If you were sick, it would show on here.
Her:-you are depressed and have anxiety, you're not ill. Me:-Depression and anxiety can cause your rib cage to be so inflamed it crackles (proceeded to press on my ribs so she could hear it pop and crackle)? Her:-your mind is a powerful thing. Me:-I only got depressed after I started getting physical symptoms. Her:-You have a problem...there is something wrong with your life. Me:-I have great friends, an amazing family, a great job, and a fantastic fiance...the only problems I have are physical" Her: (yelling at me) I am so disturbed by you! What is wrong with you? I am the doctor! Stay out of doctor offices!
Posts: 594 | From NJ/NY | Registered: Jun 2006
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posted
My husband was just in the ER today. When the ER doctor came over to ask about the problem and why my husband has a PICC line in his arm, my dh told him he has lyme disease.
The doctor, " you can't have lyme disease. You look ok to me."
Then he also said "lyme disease is not treated with rocephin."
Good grief! What ARE they teaching doctors these days!
Oh, and there will probably be more to tell - the hospital is sending in an ID doctor tomorrow!
Posts: 160 | From Abington, PA, USA | Registered: May 2005
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Dave6002
Frequent Contributor (1K+ posts)
Member # 9064
posted
"I feel I am dying", I finally said the truth, intending to warned the doctor that I had serious problems.
"That just comfirmed my long suspect that you have Hypochondriasis".
Then happily wrote the referal for the mental health doctor.
Never say this to a duck even it's the truth, otherwise you'll end up in mental health center.
Posts: 1078 | From Fairland | Registered: Apr 2006
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posted
My endocronologist is arrogant and good-looking -a truly wretched combination. Having being diagnosed with multiple endocrine problems including hyperthyroidism that also displayed as hypothyroidism I finally said, after researching my condition, "I think I might have Lyme disease."
He looked at me very slowly, laughed in my face, and said, "Yes, it was very popular for people to think they had Lyme disease 10 years ago - people were becoming quite hysterical about it, but we don't have Lyme disease in British Columbia."
I then asked him to explain why the US has over 20,000 documented cases on Lyme disease a year, which the CDC say is under-reported by a factor of 10, and why Canada only had 34 cases - he really didn't have much to say.
The next one I swear is true - a friend of mine is a nurse, and she asked an infectious disease doctor at the hospital where she workds why we don't have Lyme disease in British Columbia. He said "because they don't cross the border." He was being serious.
TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
Before I knew that I had lyme I worked with a doctor for several years who admitted that she had no idea what was wrong with me. We worked with several very strict and difficult treatments. I was extremely compliant and she was well aware of that. She finally told me that she couldn't help me. Later, I read in my medical records "Why won't Terry let herself get well?"
Like I wanted to spend thousands of dollars and feel absolutely horrible for years on end because I didn't want to get well???
There have been many things over the years that are just as bad or worse but I won't be able to sleep tonight if I start thinking about them now. Terry
[ 12. May 2007, 07:02 PM: Message edited by: TerryK ]
Posts: 6286 | From Oregon | Registered: Jan 2006
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"You are too stressed" Do you work AND have kids?"
"You need to exercise more and lose weight"
"You need physical therapy"
"You need hernia surgery" This was for an unexplainable pain I had in my groin area that lasted 8 months and mysteriously went away. Nothing had showed up on CAT scans! The doctor got mad at me when I challenged him.
TMJ pain- "You need cortizon shots"
Heart Pains in ER - "You need to relax and they just gave me Xanax upon releaese"
First LLMD after 8 months of antibiotics and not getting better- "This may be as good as you get"! This is the dcotor I went to for three years and he missed my Babesia.
Quotes pertaining to my kids:
I tell pediatrician my husband and I have lyme and I'm concerned about the kids- "Well, what are the manifestations?"
I finally go to Dr. J with the kids and all three get diagnosed. I go back to their local pediatrician with test results, info etc. He says to me: "You have to watch all these doctors at 1-800-TICK BITE- they are out to take you money" I was floored with that one. "Bartonella doesn't last long and is blood born" "You and one other mother are bombarding me with all this information" "There are other tests besides Quest/Lab Corp?" He knew nothing about MDL or Igenex.
I could write a bokk myself with the endless,senseless quotes I have gotten from docotrs. Luckily I do have common sense and am a fighter and pursued every avenue I could to get my family diagnosed properly.
I just feel for the families who are on the diagnosis carousel and aren't getting answers to their families true issues. I just can't beleive how clueless medical doctors are in regards to this disease!
Posts: 238 | From Bethlehem, PA | Registered: Oct 2004
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posted
this thread has been real medicine for me...
I've had two doctors on two separate occasions tell me that they don't know what this is, but being that I've been sick for a long time and haven't dropped dead yet, whatever it is is not possibly dangerous...
Posts: 169 | From former Philadelphian | Registered: Jun 2006
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Truthfinder
Frequent Contributor (1K+ posts)
Member # 8512
posted
I got the old:
"You have too many symptoms. No one could have that much wrong with them. Obviously, you need to see a psychiatrist."
This from the head of the G.I. Department in a large, prominet hospital in a major metropolitan area that I had travelled 200 miles to go see.
Sheesh. Thanks for the drive-by psycholanalysis, Duckster.
Tracy
-------------------- Tracy .... Prayers for the Lyme Community - every day at 6 p.m. Pacific Time and 9 p.m. Eastern Time � just take a few moments to say a prayer wherever you are�. Posts: 2966 | From Colorado | Registered: Dec 2005
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posted
13 years ago when I was 21, My dad and I went to see a "SPECIALIST" at Shands Hospital in Gainsville Fl.
We stayed at a motel the night before after a long drive from Ga. Hopeful that this guy would be different than the others, and actually try to figure me out between TEE TIMES.
This was a year into major pain that I thought I had gotten after getting hurt on a trampoline.
After telling him that I couldnt play guitar anymore or any of the other things I enjoyed as a 21 yr old, he looked at my MRI and said "Theres nothin wrong with ya" then he walked out of my life.
My father and I sat there almost in tears and really didnt have words for that moment. (we had experienced it so many times before)
Just then, the resident came in and presented me with a "test" that Dr. %$@# thought I should take. Here are a few of the questions:
What is your name?
where were you born?
What year is this?
Who is the President? (pointing to a map of the USA) Where are you on this map?
I just looked at my father, and we walked out...... Wiser.
To add insult to injury, the resident was really hot.....unimportant you ask? Not when your 21.
Needless to say, I just got diagnosed this week. 13 years later. It is possible that I have been infected since early childhood. He didnt care to try very hard.
He doesnt remember me. BUT I WILL NEVER FORGET HIM. Yay!
~R
[ 13. May 2007, 06:42 PM: Message edited by: Rooster ]
Posts: 24 | From Studio City, Ca. | Registered: May 2007
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quote:Originally posted by kaos: Doc said, "You have Post-Lyme Syndrome and your symptoms should resolve within 3 years on their own."
I got that same reply! Son's of *****es, honestly.
-------------------- "You know, the worst, meanest, nastiest, ticks in the world are politicks," - Steve Nostrum Posts: 242 | From South NJ | Registered: Dec 2006
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posted
Go to the gyn/ob and mention that I have chronic Lyme disease, am sick and taking antibiotics.
He saids that the antibiotics have taken care of my lyme disease by now, and then tests me for syphilis! Posts: 187 | From Washington, DC | Registered: Dec 2004
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posted
Doc told me " its not LYMES disease" maybe post LYMES. My neck hurts cause I am out of shape. I am losing weight cause Im not taking in enough calories. And if it were LYMES it would've shown on my mri?????
Posts: 413 | From nj | Registered: Nov 2005
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canbravelyme
Frequent Contributor (1K+ posts)
Member # 9785
posted
From a neurologist's report (who on a subsequent visit suggested hypnotherapy):
"A. was reviewed recently complaining of tightness of all her muscles, dizziness, confusion, irritability, nausea, vomiting episodes..."
"I suggested that A.[...]try to join a swim club for exercise, strengthening and conditioning. [...] Her episodic symptoms are of a migrainous nature and are best alleviated by relaxation therapy, exercise and conditioning, regular hours of eating and sleeping and reassurance."
That was a year ago...can you say, "seizure"? Exercise? If I even get out of bed, I'm subject to one of these "attacks". Perhaps a little seizure in the pool??
-------------------- For medical advice related to Lyme disease, please see an ILADS physician. Posts: 1494 | From Getting there... | Registered: Aug 2006
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At a recent meeting with an MD at a pain clinic-I tell the doc I have lyme disease-he refers to borrelia as infectious agent, but it becomes clear he doesn't even know it is a bacterial infection.
Second visit-doc read up on lyme disease. He is now the expert. He tells me "what WE (we being the medical profession and you being only the ill informed patient) know about lyme disease is that it is totally eraticated within 3 weeks with antiobiotics" and what you have could not possibly due to lyme. I sure wish our goverment would start educating our physicians on tick borne illnesses so these doctors can stop making *** .. of themselves.
Don't even get me started on the internal medicine doc that told me borrelia was a virus and the vector was a flea....
Diana
Posts: 202 | From vancouver, canada | Registered: Jun 2005
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posted
Doc laughs and says "If you go and see enough people claiming that you have Lyme Disease, you will always find one who will agree with you". He said this after I had given him a copy of my 'positive' Igenex result!
Posts: 67 | From UK | Registered: Jan 2007
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lymeladyinNY
Frequent Contributor (1K+ posts)
Member # 10235
posted
I've had lots of outrages.
First, I was told I had postpartum depression and that I didn't want to take care of my children so I was making up symptoms.
Then, I was told there's no babesia in Maryland.
"Your Lyme tests are negative. We did PCR testing, which is extremely accurate."
I was told I most definitely did not have tick-borne illness and the tick bite was an "alleged" tick bite.
Next, I was told I needed to go into a nursing home until I could get over my conversion disorder.
Another "doctor" told my family I was mentally ill because I "laughed too much" for a person who "seemed" so sick.
I was kicked out of a family practice for refusing to see a psychiatrist for making up "fake" seizures.
I was told to stop my behavior or I'd be wheeled to the parking lot at an ER when I screamed with terrible body pain and severe muscle spasms.
My niece, a PA in an ER, told my family I was a drug addict because I occasionally use valium and oxycontin for muscle spasms and pain.
On a trip to the ER in an ambulance, the paramedics were told that the doctor on call was angry they were bringing "that woman" in again.
A psychiatrist diagnosed me with hysterical personality disorder when I seemed to have a fixation on the fact that a tick bit me and I subsequently couldn't walk.
The list goes on and on!!!
-------------------- I want to be free Posts: 1170 | From Endicott, NY | Registered: Sep 2006
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Before the positive Igenex, I had a board certified rheumatologist tell me after my 20 year illness:
"The good news is that there is nothing really wrong with you. The bad news is that you won't get better, but some antidepressants may help."
This was her synopsis of the official position in the Fibromyalgia/Chronic Fatigue brochure from the Arthritis Foundation. She also gave me the brochure.
I spent thousands of dollars for that ducky report.
P.S. Is there a record for number of responses to a post?
Oh, and the runner up reponse from my family doc: "All you ever talk about is yourself and your problems. What do you do for other people? If you would give some thing positive to the world, you would get back good health."
Posts: 233 | From United States | Registered: Oct 2006
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lymeladyinNY
Frequent Contributor (1K+ posts)
Member # 10235
posted
I have more:
I was taking amoxicillin and I had a bull's-eye rash after a tick bite on my 9-months-pregnant abdomen. I begged the ob-gyn to deliver my baby. She refused, saying my son was just fine because he was getting my amoxicillin. 10 months later, after my son tested positive for Lyme by urine PCR, I called her up and yelled at her, "You'd better treat a bull's-eye rash on a pregnant woman's abdomen as a medical emergency from now on!" She had nothing to say.
An ID duck told me all I needed was one doxycycline and I'd be all better, if indeed I ever was bitten by a tick.
She also said I'd already had too much antibiotic treatment (4 wks. of amoxicillin) and that I was harming my children because I was breathing and sweating out antibiotics and making them resistant! I wasn't even on antibiotics at the time because every duck I went to begging for help refused to give me any!
-------------------- I want to be free Posts: 1170 | From Endicott, NY | Registered: Sep 2006
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posted
the first neuro doctor that I went to didn't know why I was having tremors and prescribed me a heart medication. and also wrote a letter to my medical doctor that all of my blood work for lupus and lyme were negative and I was a young women with nothing wrong. I was 32 at the time.
The 2nd neuro doctor I went to with Severe neuro symtoms told me I had hyperventilation syndrom and to go home and talk to my husband about taking an anti depressant!
Another specialist asked me if I had any hobbies and how was my marriage. I was wearing a size 0, could not eat, swallowing, think, get out of bed!
The ENT that I saw because of the servere acid reflux that damaged my throat, it was so bad that my teeth were breaking and constricting my vocal and I couldn't swallow pills and felt like I couldn't breath told me that he was calling my medical doctor because I needed a shrink! by the way his wife was a shrink!
Then the gastro doctor that I saw because I couldn't eat for a year told me I had a lot of MS symtoms and needed to see a neuro! I could go on and on
Posts: 71 | From milford, connecticut | Registered: Mar 2007
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posted
I am currently seeing the physican/author of the book "The Triple Whammy Cure". This book covers how to cure fibromyalgia, chronic fatigue, TMJ, depression and many other illnesses in just 3 weeks. His thesis is these health problems are caused by low serotonin, shifting hormones and stress. Why isn't "The Cure" all over the news?
He said that seeing a LLMD was dangerous. The antiboitics they use cause liver damage. The speciality labs they use to test for Lyme look for antibodies. Treating antibodies from an old infection is pointless. The immune system has already killed off the infection leaving just the antibodies behind. That's like treating your antibodies to chicken pox!"
My reply was "Borrelia is a spirochete illness much like syphillis. It's not a herpes virus like chicken pox. Would you tell someone with syphillis they couldn't have penicillin?"
To his credit he ended up writing me a RX for Minocin. The only reason I continue to see him is for the pain meds.
Posts: 192 | From Dwight, IL USA | Registered: Mar 2007
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posted
"You are under stress". What a surprise for my doctor when I returned three weeks later with blood work from Igenex showing Lyme. He couldn't look me in the face although he did apologize.
Posts: 31 | From Bloomfield, New Jersey | Registered: Nov 2006
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LisaS
Frequent Contributor (1K+ posts)
Member # 10581
posted
My neurologist said that I was manifesting symptoms because I read about Lyme Disease, mind you I had never heard of it until a coule days before when my GP called me and told me I tested positive.
Then the neurologist called my GP adn quized her why I she diagnosed me with Lyme. As he never looked at one of my tests.
Then next time I went to that GP, he said it's not that I think that you're crazy kiddo, and he patted me on my shoulder but here, and he handed me a business card to a psychiatrist.
The ironic part is when I did go to that Psychiatrist she knew a lot about Lyme and was mad at my doc! LOL. That's karma for you. She wrote in her charts, patient here with Lyme Disease and needs help to deal with chronic pain!
posted
My husband's PCP (who I can't get him to dump, though fortunately husband goes to my LLMD and does what she says):
"Allen Steere is the guru of Lyme disease!"
And he wasn't being sarcastic.
Posts: 74 | From MA | Registered: May 2007
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tailz
Unregistered
posted
Not sure if I posted this before, but my PCP said, "Well, you can MAKE yourself lose weight! SPERM can cause protein in your urine!"
The best part was I had no boyfriend, so if the protein in my urine was swimming around, I have more problems than Lyme apparently.
Just goes to show if you are hot, you should never go see a doctor who is old enough to be your father.
My GYN smiled and said to me, "Everything comes back normal. It is all in your head. I strongly suggest you take something if it is offered (meaning Cymbalta)."
Let's just say I used the F word, and I've never gone back and don't ever intend to - ever.
And in my medical records I am reprimanded for 'reading waiting room literature' after having read a sign that something like, "If you have 3 of these 11 diabetes symptoms, you should discuss them with your doctor."
So to be a 'good' patient - don't read, I guess.
I don't even think I can laugh at this thread anymore. What they did to me has scarred me for life.
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canbravelyme
Frequent Contributor (1K+ posts)
Member # 9785
posted
Oooh I love this!
Asking neurologist:
"Can you please prescribe to me anti-seizure medication in the interim?"
"No, we believe in, 'Do No Harm'; you've been living with these events for 3 1/2 years, you can wait." [note: next appointment is in 6 months]
"But I'm here because the events are becoming more serious, and I'm experiencing serious cognitive deficits afterward. Can I cause myself permanent damage if this continues?"
He wouldn't say 'no'. Makes me shutter.
-------------------- For medical advice related to Lyme disease, please see an ILADS physician. Posts: 1494 | From Getting there... | Registered: Aug 2006
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posted
After I had waited months for the appt, and endured the trip (travel makes me ill), the doctor, whose office had no other patients waiting, said "I'm too busy to see you today."
Apparently this duck has quite the reputation: when I later related the story to another doctor, he instantly guessed who it was.
Posts: 727 | From USA | Registered: Mar 2006
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posted
I was told by an acupuncturist that they don't know anything about Lyme disease, yet they still went on to say that I don't have it and should see psychiatrist.
Posts: 526 | From NJ | Registered: May 2007
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
Gosh, I never saw this old thread.
I think besides the "Post Traumatic Stress Disorder" for which paxil and xanax
Was Rx'd (but never taken), the duck that
REFUSED to test me for Lyme take the cake (and the icing too) as
We don't have Lyme in Louisiana.
My response "Ok so just test me for it anyways".
His response "You don't have it."
My response "Do you have x-ray vision or something like that where you can see inside MY body?"
Never went back. Did write a nasty gram though after being diagnosed.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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- "Well, now, you're so upset that you're noticing EVERYTHING"
- "It is more likely to be an undiscovered disease than it is to be Lyme"
- "Can you tell me about your childhood"
- "You have to become TIRED to be able to sleep. You are probably just not active enough during the day" (I am a mother of a young child and a super volunteer plus athlete)
- "Peri menopause (about 10 years too early)
- "You've got to let this go and move on"
and so many, many others. what is wrong with the medical profession?!?! If you ask me, THEY'RE the ones not using clear thinking!!!!
Posts: 314 | From east coast | Registered: Oct 2007
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posted
1) "Why can't you just have something that is easy to diagnose." Obviously, this doctor was unable to diagnose me. I guess I forgot to specify "easy to diagnose" when I ordered from the CHRONIC ILLNESS MENU! (Insert sarcastic tone )
2) "You can't be sick, you're the picture of health!" This was from the doctor who nine years earlier said my EM rash "looked like it could be from Lyme Disease, but it is nothing to worry about."
3) "I'd like you to have some testing to look at your memory issues, but I also want to rule out any psychiatric issues that could be causing your symptoms." This was after I had just explained that aside from being sick, I actually love my job, and have a very loving relationship with my boyfriend. All psychiatric/mood disorders were ruled out as a cause! Furthermore, although my IQ test showed I have an IQ almost two standard deviations above the norm, my achievement test and D-KEF showed I had "significantly impaired executive functioning, and significant memory impairment."
-------------------- Mountaingirl
"What lies behind us and what lies before us are tiny matters compared to what lies within us." ~ Ralph Waldo Emerson Posts: 138 | From West Virginia | Registered: Sep 2007
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posted
1) "Why can't you just have something that is easy to diagnose." Obviously, this doctor was unable to diagnose me. I guess I forgot to specify "easy to diagnose" when I ordered from the CHRONIC ILLNESS MENU! (Insert sarcastic tone )
2) "You can't be sick, you're the picture of health!" This was from the doctor who nine years earlier said my EM rash "looked like it could be from Lyme Disease, but it is nothing to worry about."
3) "I'd like you to have some testing to look at your memory issues, but I also want to rule out any psychiatric issues that could be causing your symptoms." This was after I had just explained that aside from being sick, I actually love my job, and have a very loving relationship with my boyfriend. All psychiatric/mood disorders were ruled out as a cause! Furthermore, although my IQ test showed I have an IQ almost two standard deviations above the norm, my achievement test and D-KEF showed I had "significantly impaired executive functioning, and significant memory impairment."
-------------------- Mountaingirl
"What lies behind us and what lies before us are tiny matters compared to what lies within us." ~ Ralph Waldo Emerson Posts: 138 | From West Virginia | Registered: Sep 2007
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joalo
Frequent Contributor (1K+ posts)
Member # 12752
posted
My first duck said, "You can't be sick because you are overweight". (Meaning only skinny people are sick) Quack, Quack!!
-------------------- Sick since January 1985. Misdiagnosed for 20 years. Tested CDC positive October 2005. Treating since April 2006. Posts: 3228 | From Somewhere west of the Mississippi | Registered: Aug 2007
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disturbedme
Frequent Contributor (1K+ posts)
Member # 12346
posted
All by different "ducks":
1. The first night all my symptoms (almost all of them from the list of Lyme) were dumped on me, I went to the ER the next morning and the ER "duck" told me I had a sinus infection and gave me antibiotics. That made me even sicker the same day and that night I ended up back in the ER (with a different "duck" but still a "duck").
2. It's your "spirit."
3. You need to see a psychiatrist. (And, even though I didn't believe that anxiety, etc. was causing my illness, I went to see one anyway. It was somewhat helpful in dealing with my ILLNESS. I didn't get better, of course, but it was nice to talking to someone without judgement. Therapists can be good...)
4. You have vitamin deficincies. If you take these vitamins, you'll get better. (I didn't, of course. I went back to him and he told me to keep taking them and that eventually they would help. Yeah right! And he kept praising B-12 and Folic Acid. He told me that would get rid of all my problems (when my B-12 level was fine in the first place!!!!)
-------------------- One can never consent to creep when one feels an impulse to soar. ~ Helen Keller
My Lyme Story Posts: 2965 | From Land of Confusion (bitten in KS, moved to PA, now living in MD) | Registered: Jun 2007
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posted
[/QUOTE] that there was some hidden reason for my illness.... psychological, spiritual, some undealt with issue of my childhood, etc. [QUOTE] -------------------------------------------------
Spent years going back into therapy and keeping everything dredged up for myself and my family!
Talk about feeling bad now!!!!
#2 - psychosomatic
#3 - stress
#4 - there is NOTHING wrong with you
#5 - ID - reviewed my file only which included a checklist filled out on Lyme symptoms - I check 33 of 38!!!!! "No definitive proof of Lyme" Refused to even see me in his office!!!!
#6 - Post Traumatic Stress Disorder
#7 - Depression - loved this one! I said - I have them, dreams, desires...but I cant seem to
get the energy to do any of them - Depressed people DONT CARE!!
-------------------- Seeking renewed health & vitality. --------------------------------- Do not take anything I say as medical advice - I am NOT a dr! Posts: 830 | From TN | Registered: Aug 2007
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posted
I originally saw a doc about my numb ring finger and pinky on one hand.
He sent me for an electronic muscle test, with the electrodes.
The doc who gave me the test said "you don't have anything that will affect your quality of life."
Hah!
Posts: 78 | From Rhode Island | Registered: Jul 2006
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bejoy
Frequent Contributor (1K+ posts)
Member # 11129
posted
From a GP: "You have PMS. You need to embrace your femininity."
From another GP when I am in serious agony: "Look, I told your there is nothing wrong with you."
And from a wonderful and generous doctor after diagnosing me with lyme: "That rash is ringworm."
-------------------- bejoy!
"Do not go where the path may lead; go instead where there is no path and leave a trail." -Ralph Waldo Emerson Posts: 1918 | From Alive and Well! | Registered: Feb 2007
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I was wondering if I could contribute to this poll since so much has been said, it is hard.. But Actually...
"Don't panic"
Said the ID Dr in my first consultation with him some years ago when I was much better than now. A few years later I am a mess thanx to his incompentence and that of others. This sentence has now become a noir standing joke in my family.
Posts: 75 | From europe | Registered: Mar 2007
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posted
Check your records for this one: "May be due to functional overlay." This phrase was tossed around a lot in my medical reports over the years as I was trying to figure out what was going on and no one could figure anything out.
I believe it's a phrase used to mean they think there are other functional reasons why we're complaining about not feeling good.
Posts: 13116 | From San Francisco | Registered: May 2006
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posted
The first thing I got diagnosed with was Fibromyalgia. I was diagnosed after a 5 minute office visit, and no blood work to rule out other possible causes.
me: "I only have 2 tenderpoints, aren't you supposed to have 11?" rheumatologist: "well, each case is different." me: "okay, but, I don't have widespread pain, I only have pain in my legs." rheumatologist: "try these antidepressants."
Why even have diagnostic criteria?
Then I got diagnosed with Chronic Fatigue Syndrome, by the worst neurologist in the world. This is how my visit went.
I showed him my outrageously long list of symptoms. neuro: sighs, and ROLLS HIS EYES AT ME, "you think you have MS huh?" me: I... think I'm not a neurologist. Do you think I have MS?" neuro: "No. This is really a lot of symptoms"
After a 5 minute office visit, he diagnoses me with CFS. THEN orders an MRI, VEP, and EEG even though I couldn't possibly have MS.
He even sent me to an opthamologist to check optic neuritis, since I was having pain behind my eyes when I moved them and seeing spots.
eye guy: "well, your retinas look good, there's no inflammation." me: "so what's causing the spots?" eye guy: "benign floaters." me: "oh. Well what about the pain?" eye guy: "hrm... dry eyes?"
Are you asking me? He prescribed me eye drops as needed.
But my very most favorite thing was when I told my rheumatologist some of the weird symptoms I'd been having.
He said, "huh."
Posts: 306 | From Brownsville, PA | Registered: Jul 2007
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map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
Thanks for bringing this thread up again. I had forgotten how funny (or pathetic?) it is. Many names still here since I joined in 02.
But so many posters long gone since 02. I just hope they are gone due to being well again.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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posted
I had fever, sweats and joint/muscle pain that responds dramatically to antibiotic, i.e. symptoms resolve after 24-48 hours on antibiotic and return after 1-2 weeks of stopping the antibiotic. I also have swelling, twitching, history of bullseye rash, tested positive for exposure to co-infections, heart valve damage, meningitis, cranial nerve palsy, and every single other symptom of lyme disease, all of these confirmed by neurologists and other specialists.
I was told it could be "drug fever" me: Isn't drug fever the opposite, i.e. the person gets worse with antibiotic and gets better when going off?
Another explanation was the antibiotics were causing an anti-inflammatory effect. me:If that were true, wouldn't steroids work better? Steroids cause the fever to spike and worsening of the condition, doesn't that indicate infection?
I have also been misdiagnosed with MS, ALS, dystonia, myasthenia, chronic pain syndrome (which I may still have) CFS, FMS, bechet's, autonomic dysfunction, congestive heart failure, aseptic meningitis, need I go on?
Posts: 615 | From maryland | Registered: Oct 2007
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posted
I saw a neurologist becuase I was having heart palpiations, muscle spasms & twitches, fatigue, insomnia, vivid dreams, headaches, shooting pains, numbness and tingling, unexplained fevers, sensitivity to light.. the lsit goes on and on...
Anyways, I told the lady that I had been doing research and though I had lyme disease and had been trying to tell doctors for the past year and nobody would ever test me.
She then replied, "You have anxiety problems. You are alert & oriented and I see no signs of neurological distress. You complain that you have hundreds of muscle twitches a day and I have not seen one since you have been here. I will run a lyme test only because I think that telling you that you do not have lyme will not suffice."
This lady did not schedule a follow up consult and when I called to get the results she was very rude to me on the phone. She also told me I tested negative for Lyme disease. When I went to the hospital to get all of my medical records I saw that she never even ran a Lyme test on me. When a lyme test was finally run 2 months later I was positive.
Gotta love those doctors!
-------------------- "One day at a time"
Current: -1.2 IM bicillin three times a week -1.25 IV Vancomycin every day -IV glutathione and IM B12 -Byron White since Jan. 2011 -ALA, Yasko protocal, Adapten-All, thyrosol, Pekano, phosphalipid exchange, probiotics, oregano... Posts: 390 | From FLORIDA | Registered: Jun 2007
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posted
I think some of these docs do really know about Lyme and coinfections and are not talking about it because the cost of treatment will be too high for insurance companies to cover, as well as treatment being complicated and they don't want to bother.
I said as much to one rheum who tried to undiagnose me, that insurance companies were behind all this. He walked out saying he was going to write a letter to my doctor. I said, so am I. And I got there first with my letter. Needless to say, I changed all my doctors.
Personally, I think it's time for them to lose their licenses until they're willing to recognize, adequately test for and adequately treat Lyme and co's for the spreading plagues that they are.
Btw, anyone can go to www.ratemds.com and rate a doctor publicly. I have rated both wonderful doctors and ducks.
[ 15. August 2008, 04:15 AM: Message edited by: Robin123 ]
Posts: 13116 | From San Francisco | Registered: May 2006
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posted
I was told by the rheumy too much medical knowledge can be dangerous.
He refused to give me my previous fibro pain med (Vicoprofen) saying he doesn't like to give out narcotics.
He told me I need to quit smoking and get more exercise.
I told him I stopped taking the Mobic because it wasn't helping and it's similar to Viox which is off the shelves. He then wanted to increase it to twice a day.
I said it's a COX 2 inhibitor, and he says it's not (actually it is considered a COX 2 inhibitor in other countries, but not in the US!!) and when I said everyone dies in my family from heart attacks, and I'd rather not take it, he smiled and said everyone dies from heart attacks.
Um.. and this means ....what? Um...excuse me but I would prefer not to die from a heart attack (I am 50) from a drug that doesn't even work (I am taking the generic which I have heard is not for some reason as beneficial as the Brand name, Mobic).
Posts: 37 | From Connecticut | Registered: Jul 2008
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posted
I chased a diagnosis for more than 20 years. In that time I was given lots of labels with "syndrome" and/or "idiopathic" attached to them. Just a few weeks ago I was finally diagnosed with lyme, as well as a few other complications.
In all that time, doctors have said a lot of stupid things to me. The most absurd statement that immediately comes to mind is this one:
About a year ago I went to (yet another) neurologist because of rather severe neurological symptoms. My regular doctor had suggested I see him to get an MRI of my brain. The neurologist told me he didn't want to do an MRI because he didn't want to "look for trouble". I was so stunned that I was speechless.
Posts: 8 | From New Port Richey | Registered: Jun 2008
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posted
Oh I forgot! I showed him the slight droop in my right eye lid that I never had before. He said he was going to test my thyroid because my eyes were big. I said 'every doctor tests me because my eyes are big...everyone in my family has big eyes.'
'But I see some swelling there." he said.
The tests came back normal thyroid. He never mentioned what he thought the drooping eyelid and swelling were THEN!
I should have asked him at that point, what he thought it was NOW that the tests were negative, but I didn't. I had forgotten why he had originally taken the tests and in my mind I had vowed to never go back.
I had almost forgotten he had taken tests, and he had finally mentioned at the end of the visit they were normal. I had put them out of my mind because he tested in addition to the thryoid...stupid things... Vite D, Fifth's disease (I am 50 years old) ... If he was ruling out something and they were negative, what was it then?
Posts: 37 | From Connecticut | Registered: Jul 2008
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posted
I went to a neurologist after years of increasing balance problems, memory problems, trouble with comprehension, failure to recognize faces and many other neuro issues.
On the written history form I wrote that I do not drink. During the oral history I answered that I do not drink.
His advice to me after a 5 minute exam: "Cut down on your drinking."(!!!)
Posts: 345 | From East Coast | Registered: Apr 2008
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posted
after my gym found a tick in my belly button that was not tested for lymes or any other disease. She told me that lymes test are like pregancy test you ether are or your not.
-------------------- Except the ones you love,be sure that you are also being excepted!!!! Posts: 16 | From Elkton,MD. | Registered: Feb 2008
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posted
after my gym found a tick in my belly button that was not tested for lymes or any other disease. She told me that lymes test are like pregancy test you ether are or your not.
-------------------- Except the ones you love,be sure that you are also being excepted!!!! Posts: 16 | From Elkton,MD. | Registered: Feb 2008
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lymielauren28
Frequent Contributor (1K+ posts)
Member # 13742
posted
I went to an Infectious Disease Dr. and when I told him I was certain I had Lyme he said, "Lyme disease? You think you have Lyme disease?! Do you know how rare that is? It's hardly heard of in the north, and we don't have it at all in the south! And let me tell you girly (yes, he called me girly)if you THINK that's your problem, then you are waay out there and I can't help you."
I replied, "No you can't!" and walked out.
-------------------- "The only way out is through" Posts: 1434 | From mississippi | Registered: Nov 2007
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posted
My first Lyme symptom 27 years ago was a sudden sharp stabbing pain under my right should blade that began in a Statistics class in college and never went away.
I'd be rich if I had a dollar for every doctor, counselor and health practitioner who asked "And how did you FEEL about that statistics class?" (I got a "A")
My daughter: I took her to a neurologist who said in one breath that someone her age (13) shouldn't be on Zoloft because it was a "strong" medication and in the next breath blamed her severely tremoring legs on "anxiety"
Marla
-------------------- "Life isn't about waiting for the storm to pass, it's about learning to dance in the rain." Anonymous Posts: 450 | From California | Registered: Feb 2008
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posted
I was going numb all over on my left side (including inside my throat) so I made an early appointment w/my neuro and he told me:
"Don't come back early for your next appointment unless you lose the use of a limb, or go numb from the waist down"
When I finally go back my CDC positive IgeneX results that I had my GP order and brought them w/me to my next appointment and told him that I finally knew what was wrong with me he said:
"You don't have lyme (as he is waving the paper around in his hands), you don't WANT to have lyme, from what I hear it is really BAD!"
Vermont_Lymie
Frequent Contributor (1K+ posts)
Member # 9780
posted
I was explaining to a doctor (not my llmd, clearly) how over a year of high-dose antbiotics had helped: my crushing fatigue was gone, along with horrible joint and muscle pain, facial numbness, uncontrollable tremors, brain fog, inability to stand, and daily chest pains. I said how grateful I was that long-term abx had saved my life, and although all my symptoms were not completely gone, I was still getting better, had not had problems with the abx, and before starting treatment felt like I was dying.
The doctor then said, "Yes, but do you have any objective symptoms and evidence? Without objective evidence you shouldn't be taking abx."
NanaDubo
Frequent Contributor (1K+ posts)
Member # 14794
posted
One visit with my PCP several years ago: I was having horrible ear aches and wanted her to have a look.
She said my ears looked just fine. I said that I thought lyme or certain abx could cause ear pain.
She rolled her eyes, looked at her watch and said "go home and take some Tylenol."
Fast forward to a few months ago. I needed a form signed by PCP to cancel some travel plans.
She said "why would I put my medical license on the line because you don't feel like going on a trip?"
I said "because I don't feel well."
She rifled through my file and said "well, this Igenex thing, we just don't like that lab and this Doctors Data heavy metals test, I've never seen any blood work on you that shows heavy metals".
"I suggest you stop eating food you are probably allergic too (I did years ago) and this will all go away."
"Take the trip, it might be good for you."
Maybe that's sufficient for her medical license to be on the line!
Posts: 1129 | From Maine | Registered: Feb 2008
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posted
Sitting in the drs office one day with muscle spasims, chest pains, extreme fatigue, etc.
I told the doctor what my complaints were that day. After looking in my chart for awhile she said that all the tests i've had in the past were all normal.
my muscle spasms were from stress and I should go get a really good massage.
My chest pains couldn't be explained so she told me not to worry because if it was cancer it wouldn't hurt.
I had just had a friend die from cancer and it hurt him all the time.
For fatigue, quit my job and find something easier.
Posts: 317 | From Kansas and New Jersey | Registered: May 2008
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First LLMD appt Oct 3rd to start treatment! Currently on 500mg Cefuroxime twice a day Posts: 52 | From Windsor, ON | Registered: Jul 2008
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Lauralyme
Frequent Contributor (1K+ posts)
Member # 15021
posted
After showing my GP my positive Igenex of Babesia "Babesia? hmmm I don't know what that is, but I don't think you have it"
-------------------- Fall down seven times, get up eight ~Japanese proverb Posts: 1146 | From west coast | Registered: Mar 2008
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posted
"YOU DO NOT HAVE LYME DISEASE PAULINE"... "no need to test"... and "come back when you have a babysitter and I can examine you". Then he passed me a bottle of Paxil.
When I DID get tested positive a month later after I ended up in the hospital deathly ill, I wrote a big, long letter to that practice!
Posts: 144 | From Connecticut | Registered: Sep 2006
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posted
I went to see a neurologist because my left side (face, arm, leg, foot...) had gone numb. I had a long list of other neurological symptoms.
His only theory was that they were probably the manifestation of some mediumnic/channeling powers my body was trying to block. I could not believe it!
Posts: 209 | From Montreal, QC, CAN | Registered: Jan 2008
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Dawnee
Unregistered
posted
I went to a neuro who did not perform a neuro exam on me... instead he took a phone call during my visit. He never touched me. He sent me to another room to have some nurse perform an EEG (she ALSO took a phone call during my EEG)
I was told to come back in a month. When I came back I asked why I never got an exam .... And the doctor tried to convince me that I HAD had an exam but that I just couldn't REMEMBER!
I got my files..and sure enough, he had made up exam findings. He said my babinski test was normal... uh.. my shoes never left my feet so how do you know that?
Said my reflexes were normal (I went to a new Neuro three days later who found me to have very hyper reflexes)
The list goes on. Outrageous that he tried to convince me that he'd done an exam, Outrageous that he made up exam findings, Outrageous that the B**tard still has his license.
groovy2
Frequent Contributor (1K+ posts)
Member # 6304
posted
Hi All
This is a Really good thread and someone should make a Book out of it- Seriously -
When you read these posts make sure to notice that Very Few of these people are posting here Any More - they have gotten well and moved on with there lives --
You Too Will get Better and Get Your Life back -
The post about the Cheese is Priceless -Jay-
Posts: 2999 | From Austin tx USA | Registered: Oct 2004
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posted
We went to a regular doctor a few days ago, before switching doctors.
The first doctor said. "Go home. All you have is a simple virus. You will be fine in 3 days."
In three days, we went to a much better doctor. This new doctor took a bright light pointed to all the red rashes and he said "This is obviously disseminated lyme."
He thinks the first doctor is nuts.
Posts: 43 | From RI | Registered: Aug 2008
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posted
Well, since the conventional docs labeled me a "complex IBS case" a few years ago, their reply to everything is:
"Well, you're just constipated"
I tell them that I've got severe pain in my ribcage, and sometimes I can barely breathe.
"You're just constipated"
I tell them that I'm dizzy and my heart rate drops really low at night, and I'm really short of breath.
"It's probably just the constipation. You're just backed up."
I go to the ER and tell them that my heart is racing, I feel really weak, I can barely stand. It feels like my spleen is super swollen. I've also had diarrhea a few times.
"It's probably because you're constipated"
But I've had diarrhea?
"Yea, that happens sometimes when you're really constipated"
Posts: 710 | From West Coast | Registered: May 2008
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kelmo
Frequent Contributor (1K+ posts)
Member # 8797
posted
Groovy said:
quote:This is a Really good thread and someone should make a Book out of it- Seriously -
When my daughter was starting treatment and herxing out of her mind, I printed off this entire thread, put it in a binder, and we would take turns reading it.
It helped us deal with previous years of being jacked around by "specialists"
Posts: 2903 | From AZ | Registered: Feb 2006
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