Topic: Lets hear some of your Md comments before correctly diagnosed?
lymebytes
Frequent Contributor (1K+ posts)
Member # 11830
posted
I just had to see if all Md's are as illiterate every where else as they are here in California.
Here were what some of the Md's told me was wrong when I was search for answers. Now keep in mind I had 35+ symptoms and had dropped 25 pounds overnight:
Some classic diagnoses/responses from Md's I had to listen to:
"Get a life, you are fine, go see a chiropractor!" "If you smoke, don't smoke and all your problems will go away!" "Are you ready to talk about your emotional problems now, because all your tests are normal?" "You clearly have anxiety!" Nuerologist - literally shrugged his shoulders and said, "Hmmm...MS?" Gynecologist learned they had tested me for LD: "Hmmm, they are really reaching now!"
The classic of all after I was diagnosed with LD, a mainstream Md said: "How'd ya get LymeS? Have you been back East?"
"You still are run down from the flu you had six months ago."
"Celiac Disease." (Honestly, that's what I thought it was because I had ALL the classic symptoms, including wheat intolerance). When I tested negative, "Let's look at your gall bladder."
"Somatization Disorder. Your unresolved emotional issues are making you physically ill."
Same doctor after CDC positive Lyme test, "I still think it's Somatization Disorder. Your Lyme test shows past exposure, but I don't think that's a problem for you now."
Gyno at recent check-up, "Lyme testing isn't very accurate." I said, "Yes, but I have 8 positive bands, over 40 symptoms, and have had a positive response to treatment, doesn't that confirm diagnosis?" No answer.
Plus, same visit,"If all your Lyme doctor does is treat Lyme patients, I'd be careful, it's probably a scam, I just don't think you'd have to travel to see someone who will treat Lyme."
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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lymebytes
Frequent Contributor (1K+ posts)
Member # 11830
posted
Sixgoogykids, I am laughing my rear off and it isn't funny, but it is, you know what I mean!
Your Gyn made me think of my Gyn and I edited my post to add it.
Unreal..and so stupid!
Somatization disorder, (real meaning: hypochondriac) - my husbands neruologist diagnosed him with that! He also has LD.
posted
My PCP said: "So, where did you get Lyme'S'?" I said: "when I worked for Nasa and they send me to the moon, apparently that is the only way you can get Lyme, not LymeS like you called it, just plain simple Lyme".
Lymster in WA
Posts: 303 | From WA | Registered: Jul 2004
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posted
So in honor of stupid answers like these, we have prepared stupid questions, plus more stupid answers over at Off-topic, Stupid Questions post. Of course you're all invited to come up with questions as stupid as these answers for our in-house doc-duh to answer... Posts: 13116 | From San Francisco | Registered: May 2006
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posted
After being diagnosed by my MD as having Lyme and being on antibiotics for a month, he says "well, it must not be Lyme if it didn't go away already".!!
Thank the Lord for you guys.
Julie
Posts: 494 | From Michigan, USA | Registered: Jul 2002
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posted
1st Doc-Duh...Neuro ''you have a ``FLU'' in your nerves...it will go away...it didn't
2nd Doc-Duh..Neuro...''Im 90% sure you have ALS theres nothing you can do...I would get your affairs in order, it usually takes 3-5 years''
3rd Doc-Duh...PCP...''Im not going to send your bloodwork to IGENX, it's a scam, besides you have ALS don't you want to be enjoying the time you have left?''
3yrs later...not dead yet and am getting better
-------------------- Dxed ALS 2/05 Dxed Lyme/Babs 9/05 2/08 Finially Improving
"It Can always be worse...." Posts: 51 | From Victor, NY | Registered: Aug 2007
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
MINE were AFTER a correct diagnosis because I didn't get 100% in 30 days of Doxy!!! They then re-diagnosed me Post-Lyme and hinted that I had mental instability issues for not having gotten completely well- and blamed it on the only thing they could find in my file relating to that- PTSD from being held at gunpoint over 5 years previously!!! It was SURREAL!!!
Rheumatologist who diagnosed me Lyme, then Post-Lyme says, when I asked him for more Doxy-
"Antibiotics are dangerous- besides- you were held at gunpoint!"
LOGIC??? LOGIC ANYONE????
MY PCP then sent me to a psyche consult who said I didn't have any pscyhe problems but he couldn't diagnose Lyme or not-!!! But HE kept bringing up that darn gunpoint episode to explore what was obviously the Rheumies theory- and then months later I get sent to this ID idiot who says, when talking about why I am there-
"-and you were held at gunpoint!"
I'm like, "WHAT THE )!&!@^@ HAVE THESE PEOPLE BEEN SMOKING????????????????????"
Doctors!!!!!!!!!!
There are good ones, angel ones, like our PLLMDS*)!*)!! And then there are... *sigh* the OTHERS!! Like a bad horror film*)!!!!!!!
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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Beverly
Frequent Contributor (5K+ posts)
Member # 1271
posted
I heard things like....."what is the matter can't handle turning 30?" "Is your husband not giving you enough attention?" "It's stress, you are causing your own pain."
And I think there were doctors who thought I just wanted attention even if they didn't come right out and say it. I am sure I was told more stuff, but I cannot remember it all, it's probably a blessing that I can't.
Posts: 6638 | From Michigan | Registered: Jun 2001
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ID Specialist: "You may or may not have Lyme, there's no way you have babesia or bartonella....take some Lexapro."
Posts: 449 | From Vermont | Registered: Nov 2004
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posted
After countless tests over a few years with nothing coming back conclusive but my symptoms getting worse my neurologist said "I don't know what it is but it is obviously progressive, come back in 6 months perhaps the tests will show something then."
-------------------- Lucy Posts: 342 | From Hawaii | Registered: Nov 2005
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tailz
Unregistered
posted
My favorite - not sure why, but:
"Sperm can cause protein in your urine!"
Then...
"Well, you can make yourself lose weight!"
"Everything comes back normal (grin). It's all in your head."
I still have nightmares - grind my teeth worse than ever, too. My teeth will never be right again.
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CD57
Frequent Contributor (1K+ posts)
Member # 11749
posted
"You can't have neurological Lyme, because if you did you'd be really sick and need Iv antibiotics".
Posts: 3528 | From US | Registered: Apr 2007
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CD57
Frequent Contributor (1K+ posts)
Member # 11749
posted
"Igenex tells everyone they have Lyme so if you have a positive test from there it's highly unlikely you have Lyme."
Posts: 3528 | From US | Registered: Apr 2007
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CherylSue
Frequent Contributor (1K+ posts)
Member # 13077
posted
My doc at the time said, "Don't come back until you see a psychiatrist!" Wasn't that rich????
Posts: 1954 | From Illinois | Registered: Aug 2007
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lymebytes
Frequent Contributor (1K+ posts)
Member # 11830
posted
Unreal...
Made me think of another Md who prescribed Amoxi for 2 weeks. He said, "You aren't better so it couldn't be Lyme".
Also, same Md told me "I am acting like I should be in the hospital (then laughed) and said for anxiety!"
As my whole body was wracked in neruo pain!
Well I must say it....it is an old joke and it use to be a "attorney" joke, but I am changing it:
What do you have when you have 1000 Lyme illiterate Md's at the bottom of the Ocean?
Me: But did you see the positive and IND bands I did have on my results? Did you do any research on Western Blot and how to interpet the bands?
Doc: "No"
--I now explain briefly the meaning of a positive 18+, 66++, and IND on 31/41 and that along with my gobs of neuro symptoms it's extremely likely that it's Lyme.
Doc: "This is beyond my area of expertise. I received my training in NYC - we didn't see Lyme there"
He then told me he didn't want to see me any more...I was a nice person but he couldn't help me.
Please note: this MD doctor is treating patients in SW Connecticut! About 45 miles from Lyme, CT. Doesn't have a clue how many people he has sent away with LD. So frustrating!
I don't expect every MD to be an expert on Lyme. But I do expect them to know how to read and interpret a Western Blot, understand that negative isn't always right and that when a normally healthy patient walks in the door with a pile of odd symptoms it's worth considering LD! I'm sure many people just go home and suffer...and the misdiagnosis problem continues.
~megan
Posts: 257 | From Connecticut | Registered: Oct 2007
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djf2005
Frequent Contributor (1K+ posts)
Member # 11449
posted
wow this is all quite funny.
here goes-
"well, your severe head pressure is not from lyme or a tick borne disease"
me- ok, so what could it be?
doctor- um, i have no idea.
me- um, so what do i do?
doctor- see a physciatrist
i have like 25 others but i cant remember.
another neuro told me to throw away my laptop because the internet is "poisoning" my mind
luckily, i found lymenet ON THE INTERNET and saved my life.
cant really hate them though, they just dont know any better and its simply ignorance.
-------------------- "Experience is not what happens to you; it is what you do with what happens to you."
Really, it's freakish. I hate to even think about all of this - even though it IS funny - because it's just so awful, makes me so viciously mad and takes away my healing energy. The worst is, I really do believe many of these folks were 'good' docs and had my best interests at heart. But the ignorance was woeful and the bedside manner a disgrace.
otm
Posts: 314 | From east coast | Registered: Oct 2007
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AZURE WISH
Frequent Contributor (1K+ posts)
Member # 804
posted
the first two years when I got sick ages 10 - 12
she's faking (told to my parents who fortunately didnt believe any of the drs who said this)
its viral it will go away
its growing pains
its stress
its your fault your sick (to me at age 12)
i was in tears after this last one. I felt bad enough about being sick
and about only 1 teacher and no students at school believing me
plus not knowing what was wrong and having no dr saying they could help me ...
and then to be 12 and blamed for how horrible i felt...
posted
Upon telling my primary duck that I consulted with an LLMD and tested positive on the CD57, the primary duck said:
"You tested positive on a CD-What? That is a test for Lyme?"
I tell him I also tested positive on the Igenex WB. He says:
"Igenex is notorious for telling customers what they want to hear. People want to hear that they have Lyme. I know how desperate you are to find out what's wrong with you. I've watched you deteriorate before my eyes over the past seven years.
I know you are very sick with an infection or illness of unknown origin. So if you are THAT desperate to have a Western Blot you should request that Quest or LabCorp do one. Their criteria are more reasonable and they aren't out to tell everyone what they want to hear."
Posts: 503 | From Maryland | Registered: Oct 2007
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posted
"I haven't seen you happy since you've had a boyfriend...go get yourself a boyfriend."
"Well, we've now done the million dollar test work up to find out that you are depressed. You have to get on the bandwagon here!"
But...But...my alltime favorite quote is " You know what your problem is? Your problem is that I can break my foot and go work an eight hour shift, but you can't deal with these little aches and pains you are having!"...from my mother! FKOW
-------------------- Its not easy bein green... Posts: 11 | From Tickville | Registered: Oct 2007
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posted
I don't think this is innocent ignorance. I think they're being told to turn away Lyme patients by the insurance companies, and just to say anything to get us out of there. And I've had my share of that, in 25 years, and even after, when I did find out that I had Lyme. The doctors have fought the Lyme diagnosis even when I have found out.
I called a rheumatologist on it. I went to see him to get some meds, after being told by his office that they treat Lyme. I came in with a positive Western blot. Then he sent out for an ELISA, comes in the room, says "Good news, you're negative." The second line on the ELISA form says a negative test result does not necessarily rule out Lyme, but he wasn't interested in that line.
I said I had a known tick bite, with 25 years of symptoms following, a positive Western blot, and a fantastic response to clindamysin that month(fibro pain down to zero, with other symptoms diminished). Oh no, you're negative, he said.
Oh no, I'm positive, and I let him know my opinion about the insurance companies not wanting to pay for our treatment. I'm tired of these people thinking they can say anything they want to us, and I think it's time to tell them so.
Many months later, representatives from that hospital were out on the street asking for community support signatures. I explained I had no trouble with the hospital, but with a few of the practitioners there who refuse to recognize Lyme, and I named them. And I said I would not support the community pledge drive until that was dealt with.
I think it's time to call them mr and ms, not dr, if they won't doctor.
And I think it's time for a huge class-action lawsuit.
Posts: 13116 | From San Francisco | Registered: May 2006
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