posted
Just looking for some funny stories about an unfunny topic-- how undereducated people are about Lyme.
I'll get the ball rolling: my dog's veterinarian remarked that you can only get Lyme in or very near Lyme, Connecticut.
Sigh.
-------------------- Currently infected with Lyme, Babesia, Ehrlichiosis, Rocky Mountain Spotted Fever, Mycoplasma, & Q-fever.
10 months into treatment, currently on Bicillin, Rocephin, Doxy, Biaxin, and Mepron. Posts: 87 | From USA | Registered: Sep 2010
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just don
Frequent Contributor (1K+ posts)
Member # 1129
posted
cardiac rehab RN nurse says "Oh lyme, thats nothing,,,it goes away on its own,,dont have to treat"
-------------------- just don Posts: 4548 | From Middle of midwest | Registered: May 2001
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steve1906
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Member # 16206
posted
My last doc visit was with an Infectious Disease doctor. I only went to make my family doctor happy...anyway- here's what happened.
I told him everything I've have been going through!!! He then logged on to the internet to research my symptoms...right in front of me...
-------------------- Everything I say is just my opinion! Posts: 3529 | From Massachusetts Boston Area | Registered: Jul 2008
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randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
i spent months with an infec doc and the last appt she said "well i never thought you were sick anyway."...
gggrrrrrr
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
"There is no lyme disease in Montana". six times, six different doctors.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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momlyme
Frequent Contributor (1K+ posts)
Member # 27775
posted
Before I knew better... I took my 11 year old son to an "pediatric infectious disease specialist" who promptly told us that three weeks of antibiotics were adequate treatment for lyme... any further treatment is unnecessary and that if he still has symptoms, they are all in his head.
A month later I got a bill in the mail for the co-pay... $30 ... but I had paid it before the appointment.
My girlfriend called when I was frantically searching for the receipt and I explained what was going on. She said, "Why don't you tell them it's all in their head -- we were never there!"
-------------------- May health be with you!
Toxic mold was suppressing our immune systems, causing extreme pain, brain fog and magnifying symptoms. Four days after moving out, the healing began. Posts: 2007 | From NY/VT Border | Registered: Aug 2010
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steve1906
Frequent Contributor (1K+ posts)
Member # 16206
posted
Hey momlyme, I love that one----its all in your head!
-------------------- Everything I say is just my opinion! Posts: 3529 | From Massachusetts Boston Area | Registered: Jul 2008
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momlyme
Frequent Contributor (1K+ posts)
Member # 27775
posted
Thanks Steve. Glad you liked that too.
I went from hopping mad to laughing hysterically.
It's all in YOUR head...
WE WERE NEVER THERE!!!!
-------------------- May health be with you!
Toxic mold was suppressing our immune systems, causing extreme pain, brain fog and magnifying symptoms. Four days after moving out, the healing began. Posts: 2007 | From NY/VT Border | Registered: Aug 2010
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posted
Neurologist reports, "your Igm is positive but your Igg is negative so you must not have had Lyme 2 years ago when you had the bullseye rash and other symptoms". I say, "my western blot was positive 2 years ago and primary care dr diagnosed and treated Lyme for 3 weeks." Neurologist says, "oh, then this is a false positive and I don't know what is wrong with you"
Posts: 26 | From New England | Registered: Mar 2010
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penguingirl
Frequent Contributor (1K+ posts)
Member # 28688
posted
My rheumatologist commented on my constant neck pain as a "virus." And was mad when I didn't immediately go to physical therapy.
Then I asked him why when my PCP gave me doxy months ago I felt more horrible than ever, more symptoms came out (I guess I was herxing but I did not know about all that yet)... the rheumie goes, "oh that is all just a coincidence."
Then the most infuriating comment from him - especially with all that I have learned to this point now - "lyme is just an over exaggerated disease... but if you do have lyme then I can refer you to an excellent Infectious Disease doctor."
-------------------- Posts: 1204 | From USA | Registered: Oct 2010
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steve1906
Frequent Contributor (1K+ posts)
Member # 16206
posted
I had day surgery a couple of months ago. The doc asked me why I can't take steroids.
I told him I had lyme disease, "what a mistake"... He got MAD and told me thats crazy. He went on the computer and printed out a bunch of crap from the internet.
I waited till AFTER my surgery~~~ and told him to go fry his ass...
-------------------- Everything I say is just my opinion! Posts: 3529 | From Massachusetts Boston Area | Registered: Jul 2008
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
I have a good one that's actually from my LLMD-- I do think he's a very competent, open-minded person and he is giving me all the right meds-- but occasionally he says something kinda crazy.
"Are you of Native American descent?"
"Yeah, I'm a quarter Cherokee."
"I'm not surprised. We frequently find Lyme in Native Americans because they are very close to the earth."
hahaha. guess that explains it?
-------------------- Currently infected with Lyme, Babesia, Ehrlichiosis, Rocky Mountain Spotted Fever, Mycoplasma, & Q-fever.
10 months into treatment, currently on Bicillin, Rocephin, Doxy, Biaxin, and Mepron. Posts: 87 | From USA | Registered: Sep 2010
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kidsgotlyme
Frequent Contributor (1K+ posts)
Member # 23691
posted
my daughter's pediatrician(not anymore) took a glance, and I mean a very quick glance, at our CDC positive Igenex test and told me that she doesn't have lyme because their is no lyme in Tennessee.
That's strange because even the CDC thinks she has it. Not to mention that we have an over population of deer in Tennessee.
Oh and BTW, my daughter has Cherokee blood on her Dad's side so that must explain why she has it. Good one, Bash.
-------------------- symptoms since 1993 that I can remember. 9/2018 diagnosed with Borellia, Babesia Duncani, and Bartonella Hensalae thru DNA Connections. Posts: 1470 | From Tennessee | Registered: Dec 2009
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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
After studying Clinical Microbiology a little bit, I can understand why physicians have such a difficult time diagnosing Lyme Disease. Hundreds of infections can mimic systemic symptoms, especially the non-specific ones.
Either way, I've heard it all. I've been called a hypochondriac, anorexic, a liar, malingering, a drug addict, and more.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
posted
I first went to the student health clinic at my university (my first mistake) when I realized I had Lyme. I told the doctor I'd done a lot of reading about it and was pretty sure I met many of the symptoms. She nodded knowingly and said, "Yeah, people tend to think they have whatever disease they happen to be reading about at the time, I saw that in med school. It's just psychological." Didn't stop to consider that maybe I'd been reading about it BECAUSE I have it, not the other way around...
-------------------- Currently infected with Lyme, Babesia, Ehrlichiosis, Rocky Mountain Spotted Fever, Mycoplasma, & Q-fever.
10 months into treatment, currently on Bicillin, Rocephin, Doxy, Biaxin, and Mepron. Posts: 87 | From USA | Registered: Sep 2010
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posted
In 1985 i was told, "You don't have LD. We don't have LD here in Upper Michigan. We DO have a very important tourist industry and having LD here would ruin that. You are 37 years old now, so you should expect that all your joints will hurt. "
NS.......I was told that........still suffering. I guess just scripting ten bucks worth of Abx would have ruined their perfect record or something.
Posts: 37 | From Louisiana | Registered: Oct 2011
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Dogsandcats
Frequent Contributor (1K+ posts)
Member # 28544
posted
When I was in HR I had to tell a man his wages were going to be garnished for a child living out of state. He says "I have never been to that state"
I held it together, trying no to laugh, and say===well there is a little person living in ____and the mother says it is yours.
But, he argued it couldn't be the father,he had never been to that state.
I explained to him that perhaps she had been in our state or he had met her in another state....OHHHHHHH, he says.
Moral: I was bit in Alaska. I live in California. I have been told many times there are no ticks in California.
-------------------- God will prepare everything for our perfect happiness in heaven, and if it takes my dog being there, I believe he'll be there.
Billy Graham Posts: 1967 | From California | Registered: Oct 2010
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posted
Comment from a PCP that I saw back before official diagnosis:
"You can't have lyme.. if you did, you'd be limping around and hobbling into the office with big, swollen knees.".. ???
He then proceeded to try and give me prozac and a sleep aid, as he thought I must be depressed. Meanwhile, I felt so dizzy, light headed, woozy, tired, etc. that I could barely stand it. What an a**.
-------------------- "The simple things can get you through the hardest times." Posts: 628 | From Connecticut | Registered: Sep 2010
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James1979
Unregistered
posted
"I really don't think you have Lyme. I think you have Chronic Fatigue Syndrome." (He thinks the CFS was acquired 2 days after getting bitten by a tick...). (Yes, that was an M.D.)
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linky123
Frequent Contributor (1K+ posts)
Member # 19974
posted
I took my son to the ER because he was having respiratory problems. The local GI doc was working some extra hours in the ER to help with her kid's college tuition.
I mentioned lyme; she became very hostile. Then she diagnosed him with a 'spastic esophogus.' I said, 'he can't breathe for heaven's sake; it has nothing to do with his esophagus.' She stuck by her diagnosis.
What an idiot.
We went to yet another ER, where they actually knew what a breathing problem looked like.
I have never mentioned lyme in another doctor's office or ER and never will.
-------------------- 'Come to me, all you who are weary and burdened, and I will give you rest.' Matthew 11:28 Posts: 2607 | From Hooterville | Registered: Apr 2009
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posted
Oh these sound familiar! I had an RN tell me (while I was in the office for IV meds) that she had Lyme disease a few years ago and all it took was 30 days of doxy and she was cured....
Meanwhile, she's telling me how she has CFS and arthritis. Then, she tells me that she doesn't understand why I need all these abx it's probably just CFS.
Un-huh.
Same doctor's office (I no longer go there) had four different doctor's come in and want to hear about how I got Lyme. After all, they had never even heard of a case of Lyme Disease in CA!!!
I was one of a very few that were going to be reported to the CDC.
(rolling eyes)
Oh, well, thank goodness for Lymenet and my LLMD!!
Posts: 13 | From Los Angeles, CA | Registered: Feb 2010
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posted
Amazing, re "no Lyme in CA" - you can let them know about a blog entry at www.LymeDisease.org -
It's the Touched by Lyme blog - scroll backwards to Mar 12, 2010 - the entry is called "No Lyme in California?" - it's a description of more than 150 responses about where folks got Lymed in CA -
AND, if they have never heard of folks getting here, then they are all sitting ducks for it when they and their pets roam around -
so I do hope you can speak up and warn folks about learning protective behavior -
I saw the most concern in a doctor when I mentioned that it could happen to him personally if he or his pets were exposed, including just engaging in walking the dog - so I suggest also making the message personal -
Posts: 13116 | From San Francisco | Registered: May 2006
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posted
Thanks for the link and the responses, Robin123!
I'm now a huge proponent of telling everyone I meet that they can get Lyme. All of my friends are avid tick checkers after hikes and walks and picnics!
But, I do need to keep spreading the news!!
Posts: 13 | From Los Angeles, CA | Registered: Feb 2010
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- I was told by more than one specialist (neurologist, rheumatologist, orthopedists) that
"lyme burns itself out in a matter of weeks, with or without" a) "any drugs" or b) "any help from you." and, then, a couple added: "it is absolutely harmless"
"now, let's talk about why you are unhappy with your life." (This was used so often by so many different doctors that they must have been taught to say this phrase.)
Another said to me (when in my 40"'s): "young lady, you really need to start taking responsibility in your life. There is nothing wrong with you that a swift case of growing up won't fix." Adding, "there is no such thing as Chronic Fatigue Syndrome."
At that time, I thought I "only" had CFS. I knew nothing about lyme. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
My records all said "undetermined amount of functional overlay." I didn't know what that meant at the time, as I carried them around with me to yet another health practitioner.
I later found out it meant I was presenting with symptom complaints to get out of functional living responsibilities - ie, that's how the complaints were functioning in my life.
Boy, did I let everyone have it when I found out, A, about Lyme, and B, about what the phrase meant. AND, got all records changed to reflect the new knowledge about an unrecognized illness.
Posts: 13116 | From San Francisco | Registered: May 2006
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momindeep
Frequent Contributor (1K+ posts)
Member # 7618
posted
Doctor #1...she's 13...of course it is growing pains...I say, No, don't think so and why I didn't think so...doc says...you should stay off the internet.
ER doctor at a local hospital...my daughter's symptoms would flare terribly at night...still no LD dx yet...probably the third of fourth time we show up on his watch...Said he didn't know what was going on here, but was suspicious that I, her mother, was the cause for all of her discomfort! Right...
At the U of M (MN) cutting edge facility...doc walks in and takes one look at my daughter and says, Well, she LOOKS healthy...whaaaa?
At the U of M...different "specialist"...your daughter has CFS. I ask, what makes you think that? Well...her story...her story tells me she has CFS...I say, would you consider LD...no the doctor says...that just doesn't fit...my daughter had almost all of the symptoms listed for LD.
Orthopedic surgeon...had been taking my daughter to him for a few months because her shoulder was killing her...Doctor...what do you think is going on with her? He looks me in the eye and says...I don't know...I respected that.
You can't die from Lyme Disease said one doctor we saw...so don't worry about it.
It's in your head, little lady.
To my daughter...It's in your mother's head..there isn't anything wrong with you.
It's in your head, we have a good phychiatrist on staff.
Posts: 1512 | From Glenwood City WI | Registered: Jul 2005
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Whenever medical professionals say that, I love to say, "You're right!! Lyme bacteria ARE found early on in the brain!"
And then I proceed to discuss their affinity to nerves. Better yet if I have some great brochures with me.
Posts: 13116 | From San Francisco | Registered: May 2006
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BoxerMom
Frequent Contributor (1K+ posts)
Member # 25251
posted
"2 positive Elisa's, 3 Positive W. blots, and a laundry list of coinfections? I'd like you to see a psychiatrist friend of mine."
Posts: 147 | From youngstown | Registered: Oct 2011
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posted
The first time my Lyme infection was properly diagnosed was by my orthopedist, who ran a WB on me that came back positive, both IGG and IGM.
This same orthopedist had recently treated my son for septic arthritis caused by Lyme.
Both me and my son were referred to an ID doctor for treatment. My son had been started on IV rocephin while hospitalized for emergency surgery and treatment for the septic arthritis. Meanwhile, I was put on oral doxy, 400 mg twice a day.
Three days into the doxy, I started herxing something awful, though at that time, I didn't know what a herx was.
When I reported back to the ID doctor for a recheck, I told her about my response to the antibiotics. Her reaction? "You must not have Lyme disease after all." Since I didn't immediately start to feel better on abx, I could not have Lyme!
I was in shock. What about the positive WBs, what about the EM rash surrounding a tick bite a year earlier, what about all the symptoms I had--a full page of them--suggestive of the disease?
This ID duck then tells me, "Hmm, the WBs must be false positives...though the EM rash does throw me for a loop. Still, you must not have Lyme. I think you're depressed."
And then she tells me, "I think you just WANT to have Lyme disease, because that is what your son has."
Aaaggghhhh!
Posts: 962 | From Charleston | Registered: Jan 2002
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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MADDOG
Frequent Contributor (1K+ posts)
Member # 18
posted
Your knuckles hurt due to impact arthritus from your job,you have Tennis elbo. But doc i never have played tennis. Just take this motrin and you will be better.MADDOG
Posts: 3996 | From Ohio | Registered: Oct 2000
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