posted
I think a few docs let me down, but I resent my GP the most.
I had recently moved to a new state when my obvious decline began, so I had no existing doctor/patient relationship.
The first time I went to see my GP was for tingling in the face and extremities, and it had already been going on and worsening for months, but I was kinda in denial and waited until it was bad to see a doctor. I was 28, no other medical conditions.
She ordered an ELISA test, but it was negative.
About a year later (during which I was extensively tested and examined by specialists for every condition known to man!) I started to suspect Lyme. I also made about a dozen visits to her office during that year as my condition worsened.
I asked her to either order a Western blot or do a trial of antibiotics. She refused, on the premise that I was too likely to get a "false positive." She then told me not to return to her for whatever this problem was.
In other words, she gave up on me.
This of course, after she put me on a course of steroids a few months prior...
Posts: 455 | From Was in PA, then MD, now in the Midwest | Registered: Nov 2008
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Dr. H (sure wish I could give the town)...an ID duck who told me that I had Lyme "at one time", and there's no such thing as chronic Lyme, and that my symptoms are something I'm "just going to have to live with".
Dr. T...A rheumy in one of Oklahoma's two large cities...told me that I don't have Lyme, never had it..and diagnosed me with CFS and FM AGAIN. (I was dx'ed years ago by another Dr.) Didn't mind sending me for a round of blood work (ten vials, all for me!) and had ordered a whole host of x-rays. Never gave me a good reason for either, since ALL my problems are "CFS related".
Oh..he also told me that Chronic Fatigue Syndrome is a form of arthritis, when I asked what CAUSES CFS and FM.
At least my GP apologized for sending me to those "quacks" (her words, not mine..though I wholeheartedly agree), and didn't make me go to anymore.
I got the same basic spiel everyone else here has gotten, and thanks to this board I was really forewarned about ducks like this. I wasn't surprised when I heard the same things I've seen people post here repeatedly.
The rheumy even alluded to this possibly being "psychosomatic". I could have gleefully caused him bodily harm.
Posts: 624 | From Oklahoma | Registered: Jun 2010
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posted
Dr. Mc--My husband's PCP.. saw him in the beginning when I was desperate for answers and was so dizzy/light headed I could barely stand it... Told me I had anxiety which causes people to be lightheaded (I've never had an anxiety problem in my life until lyme & co)..sent me away with a script for Prozac, which I never took. He said that since my CDC western blot only had 2 positive bands and I wasn't "limping into the office with severely swollen joints" that there was no chance I had lyme!!!!
Dr. P.. a neurologist that my PCP referred me to.. She refused to even see me! Basically yelled at me and said that she doesn't believe in chronic lyme and that she had no idea why my PCP would even send me to her and that she could not help me! I left that office crying. My PCP actually knows how sick I am, but knows she cannot treat me adequately.
I don't remember the doctor's names, but I should also mention the ER doctors at my local hospital.. Went to the hospital twice in the beginning of this w/racing heart, light headed feeling, dizziness, etc, etc.. AGAIN, they blamed it on anxiety and they couldn't find anything wrong!
This is a fun thread!
-------------------- "The simple things can get you through the hardest times." Posts: 628 | From Connecticut | Registered: Sep 2010
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posted
So many in the South so little time, where do I begin...
Dr S IDSA in North Florida...I was referred to him for my + western blot and he will not see lyme patients because of the "psychological aspect of the disease" instead they refer them to the county health department! I was not aware the health department did PICC lines for neurological lyme...good to know!
Top childrens hospital in Florida, another IDSA doc. Broke out his red book and referred to it as "the bible of infectious disease". Turn to lyme page..."tertiary lyme is treated with 3-4 weeks IV rocephin." Lyme treatment simplified at its best.
Atlanta top teaching hospital: took positive lyme elisa and recent tick bite history and brain lesions on MRI as a diagnosis of "post traumatic stress disorder or marital problems"
Daughter Pediatrician in Georgia: misdiagnosed bullseye rash as ringworm. When I persued lyme her chart reads "maternal anxiety and imaginary lyme disease"
Another IDSA winner in Georgia: Took ANCA+ vasculitis and lyme western blot as "anxiety disorder".
I have more stories! It is amazing! I have lost faith in almost every type of docs except the LLMD's.
Thanks for finding the alligator pit Lymetoo! Hope they are hungry!
Posts: 747 | From Utah | Registered: Apr 2010
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posted
To the infectious disease doc that didn't care that I had been bit in 75/76 and that it was then 200 and gave me 10 days worth of Doxy and said you are cured, into the pit you go.
To the duck two years ago that was on call at the hospital that admitted me that asked me "are you sure you just aren't looking for some attention?", umm, hello? Have you seen my EKG's? Have a nice swim!
To the Pulmonologist that kept telling me that I HAD to take steroids, uhhh, no, I don't! Watch out for that one over there, I think he has very sharp teeth!
For every quack that has ever made me feel like I was crazy, nuts or just plain invisible. For ever quack that has made me doubt MYSELF as person, into the pit you go!
-------------------- J Posts: 91 | From Northwest Indiana | Registered: Dec 2004
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For every quack that has ever made me feel like I was crazy, nuts or just plain invisible. For ever quack that has made me doubt MYSELF as person, into the pit you go!
- Amen... I think my GI dr needs to meet the alligators too.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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posted
So, ho ho ho - what I did when I finally got diagnosed: I contacted as many of the 300 so-called medical providers as I could and let them know my diagnosis. Then I asked for my records to be updated.
I also wrote a letter to the psychologist who screwed me over at a major pain clinic, telling her how I felt when I found out the secret notes from her in my record that blamed my symptoms on psychological issues when I had told her I was hurting and that's why I was at the pain clinic!
I had found it when another pain clinic asked for my records and I asked if I could speed up the transfer, so I got them myself. Yep, a speed-up to nowhere again!
Posts: 13116 | From San Francisco | Registered: May 2006
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posted
Neurologist who did all kinds of tests... gave me IV steroids...and pronounced that the
transverse myelitis would disappear in three months (2007). he was a kind and nice man... oh well. Nice is essential but not good enough.
EDT practioner who found the lyme and helped a lot but in the third year when undetected bartonella brain was killing me
and I wanted to die she pronounced that I should "get out socially" and recommended I join a club majoring in men, by which she meant date..i.e. get a sex life."I still had my looks"
I started out the appointment in tears of desparation and ended the visit in sheer shock.
My very longtime very caring integrative MD who on occasions when I wanted to discuss long term lyme said "we are not going to talk about that".
Every practioner who was nice but got restless with me when I did not improve on their timetable. I can feel that.
I am getting over lyme faster than getting over them.
-------------------- Not everything in life that can be counted counts and not every thing that counts can be counted...Albert Einstein Posts: 208 | From Northeast | Registered: Aug 2010
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posted
I called the teaching hospital ID department and asked to speak the person who knows about Lyme.
Because I am in health care, I got the courtesy of a call back almost immediately.
This ID duck, the "most knowledgeable Lyme ID specialist" told me nobody would treat my son (who has a positive Elisa and 8 positive IgG bands on WB and has DEMENTIA at 20 years old). He also warned me to stay away from "so-called Lyme-Literate MDs".
Stay away from YOU, you duck butt.
There, now I feel better. Susie
Posts: 234 | From albany, ny | Registered: Mar 2011
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posted
up
Posts: 747 | From Utah | Registered: Apr 2010
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linky123
Frequent Contributor (1K+ posts)
Member # 19974
posted
Where do I begin? My favorite is the time I took my son to the ER with a breathing problem.
The local GI doc was working extra hours there to put her kids through college.
I mentioned lyme and she became very hostile asking for the llmd's name etc.
She dx my son with a 'spastic esophogus.' I said, "it's not his esophogus; he can't breathe!"
She said, "nope, it's his esophogus!"
Well, alrighty then!!!
There's more, but I will have to come back later to tell about them when I have more time.
-------------------- '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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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Dogsandcats
Frequent Contributor (1K+ posts)
Member # 28544
posted
You are really enjoying this TuTu, remind me not to make you mad......
I have a few to feed Mr Alligator...he might get bloated and then constipated....
-------------------- 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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Razzle
Frequent Contributor (1K+ posts)
Member # 30398
posted
I think there are about 100 doctors I could toss into this pit...
The best one, ha ha, is the GI doc (we called him Dr. Brick cuz he always looked stoned) who told me not to research things that don't concern me, when I asked him a question about my Husband's GI Disease...
Oh yes, and there is the ID Duck who told me in the hospital I could not possibly have Lyme cuz ticks only exist in Oregon and cannot cross the border into WA.
He did run a Lyme test on me though, just to humor me I think, and when it came back CDC positive, he said must be a false positive.
And all the ducks at Mayo...much away, gators! They were so busy looking for how to diagnose me with a psychological disorder, they couldn't see me the patient for all their egos and lies and eagerness to go on vacation!
And the other GI doc, who seemed nice at first, but when I went alone to an appointment (instead of with my Husband), she sat next to me and said in a very condescending/patronizing voice, "Now [my name], don't you think this could all just be stress of being a newlywed?" Jeez doc, I thought I was seeing you for a REAL PHYSICAL problem (colonoscopy proved I had inflammation) not a mental one...I never went back...
And then there're all the docs at a certain teaching institution in Seattle...who insisted my gut shutting down was all just a bug and it would go away if I just got a job. Got diagnosed with Gastroparesis a week later...
And the GI doc (can you tell I have had the worst experiences with GI docs?) who told me to go to Mayo, there was nothing he could do for me (i.e., your problems are all in your head but I'm to chicken to say it to your face)....
And the ID doc who told me to shut up and take my Crohn's meds like a good patient...that there was NO WAY I could have an infectious disease because I DIDN'T HAVE A FEVER!!!
I really could go on and on...
-------------------- -Razzle Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs. Posts: 4166 | From WA | Registered: Feb 2011
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posted
Sometimes I've wondered about resorting to calling them by their first name only, not last name, not Dr, and then explaining that when they're ready to doctor again, then I'll call them doctor.
That would be quite an act of civil disobedience. Haven't tried it yet. But it's true - if they're refusing to doctor these illnesses, why should we call them doctor?
Posts: 13116 | From San Francisco | Registered: May 2006
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posted
Neuro-ophthalmologist at teaching hospital with huge following of syncophantic residents. I had a radiology report stating possible neuritis. And referral from excellent ophthalmologist with her observation of nystagmus. Had huge muscle jerks of head with eye movement too. I was worried because I couldn't do my job tasks. Performed a 3 second exam and said,
"Don't move your eyes."
I asked if he meant right then - was he trying to look at something? No, he meant FOREVER.
He clarified, "Get a different career."
PUSH!
Posts: 146 | From South | Registered: Aug 2012
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posted
Got a doctor you'd like to throw into the PIT??
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Haven't seen this in a while! Makes me laugh!
I did want to share the note I got this summer from the gators. Seems we are feeding them well, but they decided they would like to try a more varied diet.
They asked if we had any others who were getting in our way and requested we toss them in the pit for them to sample.
BUT, they said, absolutely NO politicians! As they made clear, they may only be gators to us, but even they have feelings and know a bad meal when they see it.
posted
What a stupid doctor .. not rare though. I think the gators are going to have to chew on that one a LONG time!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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beaches
Frequent Contributor (1K+ posts)
Member # 38251
posted
Wow, this thread is an oldie but a goodie.
DD had a +IgM back in January of this year. Her LLMD, YES an ACTUAL ILADS-educated LLMD!!! opted to have her try some potions he sold in his office.
Well when his potions didn't work he gave her oral abx and wondered if she had ever taken what he was going to prescribe.
$%^&*()((**%__!!%%#^_))*^*&^R$E%^&*
Um, nah, she's only been sick for what, 7 years? But no, she's never taken oral ceftin. Nope, not once, ever.
After a couple months on that, there was no improvement (predictably so) and I stated that there was CLEARLY a need for IV abx based on her symptoms and IgM + lab test (DUH).
After lots of head-scratching, procrastination and a few more mega-dollar visits, he agreed.
But the procrastination and BS from his office continued. We moved on.
BYE. Into the pit with him!
Posts: 1885 | From here | Registered: Jul 2012
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Kudzuslipper
Frequent Contributor (1K+ posts)
Member # 31915
posted
Great cathartic thread TuTu!
For me... It was many... But it was mostly the system that failed me. 25 or so years ago, with my first brutal rash bullseye-ish but allergic... They were smart enough to test... But not smart enough to treat. Started a pursuit of answers, specialist after specialist.
10 years later, I had a very smart, kind doctor, who tried to treat me on just band 41 positive cause of migrating joint pain, rashes, constant swollen glands and low fevers...she put me on doxy...but when further tests came back inconclusive, the medical group she was in, declared this was not Lyme!!!
But when my current dr... Pursued Lyme on the same band 41, I pulled up all my records from the that good dr. She tested all the right things, parasites, kreb cycle, mitochondria and I believe had a hunch but was not allowed to "practice" medicine. Sadly a year later, she left to do research and become a webmd cause she didn't feel she could really be a doctor in the current system. (And that was in 1999)
So my rant is with the system,the CDC, greedy pharmaceutical companies, greedy, greedy insurance companies.... I have had some good pcp's who have tried... They all left, cause they were not able to practice the sort of medicine they had hoped.
But then there were all those specialist who told me I was stressed, allergic, overweight, and it all was in my head. Oh about 15 I'd say, that should feed the alligators!
Posts: 1728 | From USA | Registered: May 2011
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desertwind
Frequent Contributor (1K+ posts)
Member # 25256
posted
Yeah, but you look good! Throw em all in there.
Posts: 1671 | From Tick Infested New Jersey | Registered: Apr 2010
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posted
I would like to throw in the ID doctor Dr. Thomas Lamarre. Because of Obamacare, he had to join in the office of my PCP last year. My PCP was excellent and very supportive of my ongoing lyme treatment by my LLMD.
Not being aware of the lyme controversy, my PCP thought it would be good for me to visit the ID doctor. I told him that I didn't think it would be helpful but I wanted to maintain the good relationship I had with him.
So, off to the ID doctor. The appointment was horrible. He accused my LLMD of being a gold digger. Told me Igenex was not an authorized lab. Said I could not have lyme disease.
He never offered any hypothesis about my condition. After lecturing me for 45 minutes, he left the room saying he wasn't going to charge me.
The worst part is he must have spoken to my PCP because, he is no longer on board with my treatment and is basically saying that I am well.
Sigh!
Posts: 538 | From kentucky | Registered: Nov 2011
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GretaM
Frequent Contributor (1K+ posts)
Member # 40917
posted
In gator speak
I D
Means
Indulgent Dessert...
Gators LOVE dessert!
Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
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posted
This is a great thread. Really sad to see how many people had bad experiences with the person
they are trusting their lives with. Just goes to show that doctors are not gods even when they think they are.
My story is very similar to others:
My primary care (former) waited 3 weeks to call me back with my lyme test results then proceeded
to tell me that I was off the charts positive like it was no big deal. Prior to this I went to
the doctors twice in 2 months with all the common symptoms of lyme and was shrugged off until I
literally had to demand a lyme blood test be done through my own research. After a 28 day
prescription of doxy she asked to see me again almost as if she knew I wouldn't recover. Well
after feeling 10x worse she said "well you completed the medicine you are cured your next
step would be to get some psychiatric help"
WHAT A QUACK
-------------------- T. Brown
CDC Lyme Positive Co infections? Who knows... Bands 18+ 30+39+41+45+58+66+ IGG 23+39+41+IGM Posts: 351 | From Boston MA | Registered: Oct 2013
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posted
OK, I have unknowingly been in the lyme lite for almost eight years now, just found out 2 months ago. I have heard it all, but one of my favorites is this:
Doc: So you know you moved to this small town (I grew up here and moved back)....people are not accepting of new comers, I see it all the time. Do you think this could be causing you could be depressed?
Me: I'm not really following, but I am concerned about my son regarding this comment.
Doc: Your son will be fine, he started school here and plays sports, he is accepted.
Me: I'm not so concerned about him being accepted, I am concerned that he will become narrow minded and not accepting of others!!!
Doc: Quickly turned and left the room. lol
So this is the answer to my physical problems...Really?
Posts: 19 | From Kentucky | Registered: Oct 2013
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BoxerMom
Frequent Contributor (1K+ posts)
Member # 25251
"He never offered any hypothesis about my condition. After lecturing me for 45 minutes, he left the room saying he wasn't going to charge me."
-- I had a similar experience many years ago! Thankfully, not 45 min worth! But he left the room and then I found out he didn't charge me. I told the nurse, "GOOD, because I'm NOT going to PAY him!!"
--
"The worst part is he must have spoken to my PCP because, he is no longer on board with my treatment and is basically saying that I am well."
--
That is HORRIBLE! I'm so sad for you!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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posted
Suebear, I think we're doing something right when the doctor leaves the room!
What I do after that is go out and educate the staff since they can't walk out!
Posts: 13116 | From San Francisco | Registered: May 2006
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