posted
My 1st MD ask how my home life was and if I had been sexually abused. He also said Lyme is not in Alabama.
The 2nd doctor would not even address all of my symptoms. He said we can only look at 2 symptoms. Then he pulled out a medical dictionary and read Lyme word for word and said you don't fit the text book description.
Everyone is different and has different symptoms. They don't want to admit that the patient knows more than them.
-------------------- We are their voice, Please spay and neuter! Make adoption your first option! Posts: 61 | From Alabama | Registered: Aug 2008
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posted
"You don't have edema, you are just fat! Don't come back until you have been on the Southbeach diet for 2 weeks."
When I promptly replaced her she "failed" to mail my records to new doctor. I turned her in to the Texas Medical Board, copied her Association and picked them up personally.
She didn't succeed in treating me like I was nothing! I got my records.
-------------------- 3 Strains Mycoplasma and Chlymedia 2001. After treatment fine for all 2004. Major symptoms since 2005. Diag Aug 2008 Lyme. 400 mg/d doxy 500 2/d Ceftin Posts: 164 | From Texas | Registered: Jun 2008
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Angelica
Unregistered
posted
Yalie shrink turned energy worker "There is no such thing as Lyme disease it is just something people invented and friends tell friends about and then they get it too. I don't want to hear anymore of your Lyme dogma."
He interned at Stanford. He still had the price tag on this plastic grapes draped above the armoire in his office in his zillion dollar fake Tuscan home in the hills. He use to be an emergency room duck.
I stopped payment on his check and wrote him a letter spelling out exactly why. He took it well because he knew he had been abusive.
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Ocean
Frequent Contributor (1K+ posts)
Member # 3496
posted
After having been very sick for over a year, back in '97 when Lyme was really not well known here in OH, a doctor told me (after injecting myself with things he made for a few months, to this day I don't know what they were, I was desperate), "You have Chronic Fatigue Syndrome and since these injections haven't worked, you will be like this for the rest of your life."
I was 19 years old, I went home and cried for days.
cactus
Frequent Contributor (1K+ posts)
Member # 7347
posted
From a neurologist who had (mis)diagnosed me with MS:
"Until you begin to spiritually heal others, you will not heal yourself."
This from a neurologist to a neurology patient, in a neurology practice.
She then told me that she is a medical intuitive as well, and proceeded to try to sell me a painting from the wall of her office, and to convince me to take reiki lessons from her on the side.
At that point, I got smart and found an LLMD.
After 3+ years of treatment, no more MS symptoms and no more MS diagnosis.
-------------------- �Did you ever stop to think, and forget to start again?� - A.A. Milne Posts: 1987 | From No. VA | Registered: May 2005
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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
Mine is hilarious:
I had 6 Brain SPECT scans done. Every single one was abnormal. In 2004, my Brain SPECT scan said:
"Cerebral Cortical perfusion ranging from 50% to 70% of max perfusion seen in RT frontal, temporal region, left frontal and parietal regions.
Heterogeneous cerebral cortical perfusion suggesting widespread process such as a micro vascular, infectious, or encephalopathic process rather than large vessel or classic degenerative dementing process."
I was hospitalized in early 2005. I had all my medical records with me. The Infectious Disease specialist came in, and told me "You don't have Lyme Disease."
I said "Dr. _____________ said that I do, and it's supported by 1 psychologist, 1 psychiatrist, 1 infectious disease specialist.
He said "We tested you, it was negative." I said "Testing for borrelia is inadequate, I'm well aware of this fact, and you should be too given the abundant studies available on the public medical database -- Seronegative ELISA and Western Blots."
He said, well that may be, but you don't have Lyme.
I said, well I was bitten by a tick at age 9, I've been sick since, that was 1987. I have a history compatible with the disease, I'm responding to treatment, I have bands showing up on the test, although circumstantial evidence, and I have 6 brain SPECT scans indicating global hypoperfusion and vasculitis."
He says "Let me see them, I'm going to consult the Neurologist overseeing your case." I show him and he reads what you read above, and you know what he said?
"This test isn't yours. Me and the Neurologist agree. You wouldn't be able to talk to us, this is the test of a 90 year old man with severe Dementia, neither of which are you. -- It's a lab error if it isn't yours."
So I say, well I have 6 of them, done at more than one facility. Farmington UCONN, UMASS Memorial, Western Baystate." Are you telling me they're all incompetent or that their equipment is all faulty?
He said "Well I don't know, but these obviously aren't your tests, someone gave you the wrong charts."
He then said "I know your Lyme Disease specialist, him and I worked together for many years -- over 25 years in-fact we've known each other. He's incompetent and a quack. He likes to take a lot of vacations out on his Yhat on weekends. That's what he's doing with your money."
I don't pay him. Medicare does. Medicare has investigated him and found him competent in treating me, and I reviewed his malpractice history. He hasn't had one malpractice suit, nor been brought before any medical board at any point, so I think the burden of proof belongs to you. Additionally, He works 6 days a week, has over 10,000 patients, and he doesn't own a yacht, and It's not very professional to talk about a fellow doctor as you have. I'd recommend that if you two have disagreements, that you two work it out, it's not my problem.
He tried to talk over me, but my family was there and they told him it was time for him to leave. He walked out and he was ****ed. What a ****in' moron.
-------------------- 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 was told by my PCP that I was the healthiest looking sick person he knew.
I had empty nest syndrome (my sons had been on their own in college for years already)
That it was because my husband worked nights and I was alone
The best one is that I was bored and needed a vacation..hey I would have loved to go away on a trip if only I wasn't so sick!
Posts: 343 | From North Carolina | Registered: Oct 2008
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2roads
Frequent Contributor (1K+ posts)
Member # 4409
posted
What a great thread.
I really needed to hear how much they make as*()(*)(*_ses out of themselves.
Yes, a book is a must.
Posts: 2214 | From West Chester, PA | Registered: Aug 2003
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kelmo
Frequent Contributor (1K+ posts)
Member # 8797
posted
When my daughter first got sick, we printed out this entire thread and put it in a binder.
We would read it on days we needed encouragement to deal with the crappy years of seeing doctors who diagnosed her with one syndrome after another.
It's amazing what doctors feel they can say to a patient. Just because they can pass a test, doesn't mean they should be in practice.
We have had more than one doctor lately say, "you must have brucillis, not bartonella"
Posts: 2903 | From AZ | Registered: Feb 2006
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posted
I saw this thread while searching for something else. It gave some good laughs. I thought it would be fun to circulate again.
One of my severe symptoms is light sensitivity and very Sound Sensitive. Any light caused severe pain in my head and Migraines
Doctor told me to go to the beach every day. Start by going 5 min. a day, than 10, etc. and soon I'll be able to go anywhere.
Posts: 258 | From San Diego, CA USA | Registered: Sep 2002
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1) "No, I won't test for Lyme. We don't have those ticks here." (Um, yes, we do. And I just moved here from Northern CA and went to college in western MA!)
2) MD: "Are you pregnant?"
Me: "No. In order to get pregnant, I'd have to have sex. I haven't felt well enough for sex in months. No sex, no baby."
MD: "I'm ordering a pregnancy test."
3) "You have CFS. CFS is exactly the same thing as chronic EBV. You should feel better in two to three years. Check back with me in a few months."
4) From a yoga teacher, with no medical training:
I was sick because: 1) I don't eat meat. 2) I have bad karma.
And eating dead animals is supposed to give me better karma? Riiiiiiight....
5) MD: "You have low ferritin." (Ferritin levels test out fine.) "Well, it's probably still low ferritin because you don't eat meat."
Me: "But the test showed my ferritin is normal. In fact, all of my labs are perfectly normal. And I've been vegan for five years, and only now am sick."
MD: "Let's give it a few more months. Come back then."
Posts: 398 | From By the Salish Sea | Registered: Dec 2008
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posted
I agree with a previous responder. Those with horror stories should add their opinions to www.ratemds.com. You don't need to join up or recieve spam or anything. Just fill out a simple evaluation after you find the correct doctor.
The only way some will learn is if they lose business or are admonished publically. Information can be a great equalizer. All patients deserve basic decency and an empathetic experience. Unbelieveable what some of these stories are.
Posts: 30 | From DC | Registered: Oct 2008
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posted
one of my doctors asked, How much money do you have???
I was like UGH.............. Posts: 208 | From Hudson Valley, New York | Registered: Mar 2008
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
Most common question I get when I tell them I'm sick: 'Where did you get your degree from?' and 'What level of schooling do you have?' WTF?
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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posted
So I'm bringing this back up, because I found it randomly, and thought it was great.
Here are my stories:
Chiropractor/acupuncturist: You don't have Lyme disease. If you did, your knees would be swollen to the size of grapefruits.
(When I still looked sceptical)- It's easy to think you have a brain tumor whenever you get a headache (I had not mentioned headaches or brain tumors)
Family doctor: When I came to him with Lyme- ``People get over Lyme.'' (as in, without treatment).
When I told him I'd already got an ND to sign off on the Igenex test he said sarcastically ``Welll, let's bet on the outcome.''
At drop-in clinic: I was there to talk about muscle twitches/tingling and eye problems.
Before I even got to the eye problems, he interrupted me to ask (3 times!) if I were an anxious person. Then he told me he thought it was stress.
I said I wasn't stressed. He went back to my chart from my previous visit , and started critiquing it!
Him- ``I see you came to us for shin splints. Have you resolved that?''.
Me- ``Not yet. I'm supposed to do physio for periostitis (shin splints'').
Him ``but your bone scan is normal. You can't have shin splints.''
Me ``The sports med doctor said I do.'' Him- ``You can't have shin splints.''
Arg! He was obviously looking for ways to prove I was a hypochondriac! Getting him to test just my thyroid/blood glucose was like pulling teeth!
If my Igenex comes back positive, I'm going to send them all copies!
Posts: 503 | From Alberta, Canada | Registered: Jun 2009
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btmb03
Unregistered
posted
"Go home and have a glass of wine"...!!! What the...??
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Leelee
Frequent Contributor (1K+ posts)
Member # 19112
posted
quote:Originally posted by btmb03: "Go home and have a glass of wine"...!!! What the...??
I had a similar experience east December in the midst of my horrific Lyme crash.
My PCP said, "Take a Xanax. It's like having a glass of wine."
-------------------- The ultimate measure of a man is not where he stands in moments of comfort and convenience, but where he stands at times of challenge and controversy. Martin Luther King,Jr Posts: 1573 | From Maryland | Registered: Feb 2009
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posted
Years ago I stopped to help our family doctor and crawled under his car to tie up the muffler to keep it from dragging on his way home from church. On my next visit to his office, when it was time to pay, he told his secretary not to charge me because I did him a favor last week.That was outrageous.
Posts: 228 | From Wassaic NY. USA | Registered: Aug 2002
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posted
Years ago I stopped to help our family doctor and crawled under his car to tie up the muffler to keep it from dragging on his way home from church. On my next visit to his office, when it was time to pay, he told his secretary not to charge me because I did him a favor last week.That was outrageous.
Posts: 228 | From Wassaic NY. USA | Registered: Aug 2002
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posted
Years ago I stopped to help our family doctor and crawled under his car to tie up the muffler to keep it from dragging on his way home from church. On my next visit to his office, when it was time to pay, he told his secretary not to charge me because I did him a favor last week.That was outrageous.
Posts: 228 | From Wassaic NY. USA | Registered: Aug 2002
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posted
Years ago I stopped to help our family doctor and crawled under his car to tie up the muffler to keep it from dragging on his way home from church. On my next visit to his office, when it was time to pay, he told his secretary not to charge me because I did him a favor last week.That was outrageous.
Posts: 228 | From Wassaic NY. USA | Registered: Aug 2002
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posted
Years ago I stopped to help our family doctor and crawled under his car to tie up the muffler to keep it from dragging on his way home from church. On my next visit to his office, when it was time to pay, he told his secretary not to charge me because I did him a favor last week.That was outrageous.
Posts: 228 | From Wassaic NY. USA | Registered: Aug 2002
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posted
Years ago I stopped to help our family doctor and crawled under his car to tie up the muffler to keep it from dragging on his way home from church. On my next visit to his office, when it was time to pay, he told his secretary not to charge me because I did him a favor last week.That was outrageous.
Posts: 228 | From Wassaic NY. USA | Registered: Aug 2002
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posted
I was told years ago in my quest for an answer that I needed to look to God. Will never forget that doc.
Posts: 847 | From upstateNY | Registered: Dec 2007
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karenl
Frequent Contributor (1K+ posts)
Member # 17753
posted
A University professor ( 600$ for this advice) I was couchridden since four months: " Just go out to dance".
Posts: 1834 | From US | Registered: Oct 2008
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feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
A HMO Doctor told me I had great tan lines while he was examining me for dizziness.
Posts: 3975 | From usa | Registered: Aug 2007
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
That's crazy Feelfit!
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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posted
I handed my ID doctor my western blot and he wouldn't take it. So I handed him my positive babesia FISH test and he wouldn't take it either and said "I don't believe in that crazyness, here I'll give you a prescription for an antidepressant so you'll stop worrying about this nonsense"
I told him to get an education, he billed me $450 for the 5 minutes he spent with me.
Posts: 499 | From Indiana | Registered: Oct 2007
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Dawn in VA
Frequent Contributor (1K+ posts)
Member # 9693
posted
"Lyme exists, but I won't test for Babesia or Bartonella because I don't believe in them."
More recently, and my face turned RED RED RED as I stomped like a tomato out the door after this appt.
I went to see a regular doc about something totally different, but once he saw my medication list and asked what all the antibiotics were for, he could not- and oh I tried forcefully to redirect him several times- focus on why I was there to see him.
He only wanted to argue with me about the over-diagnosis of Lyme and cited the old faithful among ducks, that darn New English Journal IDSA article. Oh how I have come to truly despise that publication. It's all I (we) hear from these people. I hate getting caught up in that trap with docs who really couldn't give a doo about what I have to say about it, even with my positive tests and titers, etc. I got nuthin' out of that appt but rage.
On the way out, with his hand on his hip, he smugly said "Good luck with your so-called Lyme and such."
-------------------- (The ole disclaimer: I'm not a doctor.) Posts: 1349 | From VA | Registered: Jul 2006
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Dawn in VA
Frequent Contributor (1K+ posts)
Member # 9693
posted
OK, just have to say thanks to all of you who posted. I am laughing so hard I might pee in my pants! You guys have a way with words, no doubt.
On the flipside, of course such occurrences are at the same time sad and disgusting and many have taken a chunk out of us emotionally and have wasted precious time while we waited and searched for our own answers and proper treatment. And understanding and some needed compassion.
Right now it's about 4AM and I'm herxing with some pain and have insomnia and I needed the giggles from the couple of pages I read. Hugs to each and every person here.
Despite the wachadoodles' nonsense, despite their arrogance, despite them giving up on us, we will not give up this fight.
-------------------- (The ole disclaimer: I'm not a doctor.) Posts: 1349 | From VA | Registered: Jul 2006
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posted
about 9 years ago, a leading Lyme doc in the NY area told me to get my affairs in order. Well, I ain't dead yet.
He also asked me if I was a praying man -- I wasn't then, so his words did click -- I better find out who this God Character is before I kick. Thus, some years after that, I became a minsiter at a healing minsitry.
I am no way healed of Lyme or allergies, but I am not dead and that is a blessing!
Posts: 462 | From Newnan, GA | Registered: Aug 2004
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posted
The most hurtful Dr I went to was an endocrinologist. I just wanted him to check my thyroid and glucose. Told him it felt like I was having bad hypoglycemic episodes.
He actually got angry with me. Him, "Do you get periods?" Me-"yes, but they're not normal..." Him-"you get periods, You can't have hypoglycemia if you're not diabetic!"
He then opened his door in front of all the waiting patients, called his receptionist over to tell her how ridiculous I was and yell at me. I left humiliated and in tears.
-------------------- Sofi Posts: 150 | From Northern California | Registered: Jun 2009
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posted
When I was 17, they told me my dysautonomia was because I was young - I'd grow out of it.
When I was 27 they told me I was a young mother - of course I was in pain and exhausted. Must be post-partum.
When I was 33 they said... well, welcome to aging. Have you seen a counselor? Even had a Dr ignore me and talk to my husband about my emotional state and how good religion was for the mind, body and soul.
The last Dr I went to because my heart was beating out of my chest and I was having throbbing pains in my left arm said, "Have you tried Valum?"
!!!!!!!!!!!!!!!!!!! I'm not crazy!!!!!!!!!!!!!!!!!!!!!
Is there no age when a woman is allowed to feel well?
-------------------- Sofi Posts: 150 | From Northern California | Registered: Jun 2009
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lymeHerx001
Frequent Contributor (1K+ posts)
Member # 6215
posted
the older I get actually the more serious they are with me.
They just say they dont know, and do take me seriouslly. Still doesnt help though.
Posts: 2905 | From New England | Registered: Sep 2004
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posted
After being diagnosed with Lyme (positive blood test,bell's palsy, bullseye rash) I stayed on doxy. for 4 weeks then stopped as directed. My rash had been going away, but when abx. stopped, the rash got ragged again on the edges and active looking. I called the ID doctor and his nurse told me couldn't be Lyme - the doxy. killed the bacteria. I said "How come the rash is active again then?" She said "Maybe you leaned against poison ivy or something else." - I said "It's in the exact same place (the rash never really went away) and only became active again when I stopped doxy." She said, "Well all I can tell you is it isn't the Lyme. It's just a coincidence that you have contact dermatitis there!"
It's really hard to get anyone to believe this conversation took place but it did! (my pcp put me right back on doxy. so it wasn't a problem).
Posts: 34 | From Saratoga Springs, NY | Registered: Jun 2008
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nenet
Frequent Contributor (1K+ posts)
Member # 13174
posted
An Infectious Disease specialist I went to (before I knew I had Lyme) told me, with a derisive smirk, that I just needed "a pep talk", and maybe some exercise.
He said I might have "post-infectious CFS."
If I had listened to him and left it at that? I feel 100% certain I would either be dead now or have permanent heart and brain damage. I had been sick with Lyme for more than 30 years, and not long after that appointment, I was bedridden for months.
Guess his pep talk didn't work so well.
Now with a year of antibiotics, I am well on the road to recovery. Once I am doing really well, I wonder if I should pay this person a visit and give them some information on Lyme.
Maybe a whole giant binder chock full of Medical and Scientific Literature on Lyme disease. Something like what the ILADS just gave the IDSA for their review.
I'm thinking I just might do this with all of my previous docs that misdiagnosed and mistreated me.
posted
"You may have Lyme, but you have to stop thinking you might have passed it to your kids. It is NOT possible."
Posts: 564 | From Tick Hell | Registered: Oct 2008
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Starfall1969
Frequent Contributor (1K+ posts)
Member # 17353
posted
I don't think I've had any quite as hilarious as some I read on here, but I heard all the usual.
NEUROLOGIST: I have seen people with Lyme Disease, and YOU do NOT have Lyme disease.
(Fast forward 6 months when I was diagnosed with Lyme and Ehrlichia)
DUCK #3: (After looking at my chart but not examining me) You seem to have some anxiety and stress issues. You should see a psychiatrist and take some Lexapro.
(Never saw the psych, but took the Lexapro--almost killed myself after one dose, just went off the deep end.
Yeah, that's just what I needed)
Posts: 1682 | From Dillsburg, PA | Registered: Sep 2008
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randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
i can't remember but i think i already posted this.
one doc said "your breathing problems and shortness of breath are because you're boobs are too big".
another said "your bra is too small".....
and one idiot (lymetoo knows who this is), literally threw me out of his office and told me to come back when i understood english!!!!! (english was my major in college, he was middle eastern...)
another ask if i was sexually abused as a child.
and the usual "how's your marriage"...type comments.
and one finally did say "well i never thought there was anything wrong with you in the first place."
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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Jane2904
Frequent Contributor (1K+ posts)
Member # 15917
posted
I think the best one for us came from a Boston Hosp. After reviewing our daughters labs from igenex, they said she was adequately treated and probably didn't have Lyme.
Forget about it, "Don't label your child" Even though she had many symptoms.
Sent us home, said anxiety!!!!!!
Almost one year later, we are retreating for Lyme and now treating for Bartonella. Per Well known LLMD pediatric.
Posts: 1357 | From Massachusetts | Registered: Jun 2008
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lymetwister
Frequent Contributor (1K+ posts)
Member # 19590
posted
Your follow up appt. is 15 min. and it will cost $400 Cash.
Posts: 1227 | From District of Columbia | Registered: Mar 2009
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posted
Looking right at my positive babesia FISH bloodwork THE local ID doc said "there is no babesia here, it's only in Shelter Island, so this must be a false positive."
He was referring to a 1996 study that found babesia in ticks on Shelter Island, but hello, do birds not fly? Do deer not swim? Do infectious diseases not migrate?
Posts: 524 | From Hudson Valley, NY | Registered: Jul 2007
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posted
Neurologist: "You might be developing Parkinsons" in one breath AND "you need to ignore your symptoms" in the next. Then "you need to go to a psychiatrist." But also "Yes, you DO need an MRI." She also sent me to a rheumatologist and an orthapedist: foot specialist. The hostility escalated when I asked about CFS.
ID duck: "Do you want to be a professional patient?" AND the basic it's all in your head line with a major rant about those who believe in late stage lyme disease.
I almost forgot, a GI specialist said: "You need to drink more, and relaaaaaax."
Posts: 702 | From North Eastern USA | Registered: Dec 2009
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I guess the most serious thing was a doctor telling a nurse (on his way out of the room) "Just give her another pad!" while I was hemorraghing on his table after he had performed a biopsy on me.
I had told him I was pregnant, I was throwing up every morning, etc. He refused to wait for test results and so essentially aborted me. The nurse shook her head and said "That's the second one this week!"
They put me on a guerny and rolled me into the emergency room where another doctor going off duty elected to sit up with me all night to be sure I didn't die. I was too young and stupid to sue the miserable man....and my mother and husband too furious to do more than yell at each other.
More recently I was asked, ever so politely, not to wait in the waiting room for the doctor. I was so sick in my wheelchair and with my oxygen tank...they suggested I wait in back so I would not upset other patients!
I did not look that bad, just weak and tired. My husband told them ever so politely that we had just decided to find a qualified physician to handle my care...and we left.
Isn't it amazing, with all the stuff we forget, that those painful insults remain with us for a lifetime!
-------------------- DOCTOR: "I don't think you are sick." PATIENT: "We are all entitled to our opinions. I don't think you are a doctor." Posts: 697 | From Northern California | Registered: Jul 2009
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sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
This one is a little different. Not exactly told to me, but about me.
I was "un-diagnosed" of LD by Mayo clinic, without even going there.....HA HA HA!!!!!
My cousin who has been ill for about 2 years went to Mayo clinic recently in search of a diagnosis......(definetly hold the Mayo)!
But anyway, he told them that he had symptoms very similar to his cousin(me) and that I have Lyme Disease.
Well of course they never diagnose anyone with LD, so they gave him a very rare disorder called parsonage turner syndrome.....even though he has classic lyme symptoms and lives in the middle of 200 wooded acres of land.
And here's the clincher......They said they were 99% sure that his cousin(me) did not have LD.
They said parsonage turner syndrome was a genetic disorder, and since he has it, then I probably do to.
And then they told him, there is no treatment for parsonage turner syndrome but that it will go away on its own within 3 years.
Unbelievable what happens at hold the Mayo!
Posts: 4035 | From Mississippi | Registered: Jul 2008
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posted
My daughter was in the hospital last fall to see if they could do anything to stop her headache. We went in to the ER but she was admitted for a couple of days.
Of course, they had to do their own Lyme analysis and they decided she didn't have it.
She has had a nonstop disabling headache for 2 years. Their opinion? "She needs more exercise."
I asked the doctor if he had ever told a patient that and they went out and exercised and got their life back. He said no.
I also told him that before my daughter was sick, she was extremely active and athletic.
He didn't listen because in her records it says "mother is resistant to the idea that exercise is a major contributor to her illness."
Posts: 984 | From US | Registered: Dec 2007
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posted
I have another one from a different doctor. He also denies Lyme is a possiblity.
My daughter has a tremor, POTS, and extreme fatigue as well as her headache.
I was trying to get him to understand there might be more than just a migraine going on and I asked him about her disabling fatigue. He said we could just give her Ritalin.
Posts: 984 | From US | Registered: Dec 2007
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linky123
Frequent Contributor (1K+ posts)
Member # 19974
posted
I took my son to the ER the other night. He had an upper respiratory infection and was having shortness of breath.
We got the local GI doc working some extra hours to put her kids thru college.
Her diagnosis: 'His esophagus is spastic. He needs to take some Maalox."
I said, 'it's not his GI tract, HE CAN'T BREATHE!'
She said, 'No he needs Maalox.'
Posts: 2607 | From Hooterville | Registered: Apr 2009
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posted
I saw an Infectious Disease doc and showed her that I was positive for Lyme and Babesia...she said "Well, most of the population has Babesia, so I dont treat that"
posted
My daughter had Lyme when she was six. She had chest pain and pain in her large muscles: not her joints. She'd had a tick bite but no rash. The pediatrician said, "children with Lyme never present with cardiac symptoms or muscle pain. You can trust me because I treat Lyme all the time and I go to conferences." By the time I got her to this doc she had an arrhythmia and a strongly positive Lyme test.
Posts: 360 | From New York | Registered: Oct 2009
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nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
I went to the doctor for back pain, undiagnosed, and mentioned the tick bite and the rash but never said anything about lyme.
He said "did you have a temperature of 106 with a rash all over your body"? "No" I said, "they looked like spider bites"(I had three EMs) With great impatience in his voice he snapped at me, "Then they were spider bites and you did not get anything from that tick! There is no lyme disease in Montana. The only thing you can get is Rocky Mt Spotted fever"! He charged me $200 for that visit.
Rocky Mt Laboratory is less than a mile from the hospital that employs him, and it is where they are trying to identify this new strain of borellia. I went to 6 doctors and they all told me there is no lyme disease in Montana.
From a lyme doctor via an internet site promising a free consultation. Nothing you are taking will cure you You will have to consult with me and that will be $1000 per hour.
-------------------- 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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nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
My GP, knowing I have lyme, tried to persuade me I need medial marajuana. That would be just great for my brain fog, I said.
How about an antidepressant then?
-------------------- 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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Haley
Frequent Contributor (1K+ posts)
Member # 22008
posted
Just recently I flew to San Francisco to see a somewhat well known LLMD. He was a character. He mentioned the medicine Alinia. I told him "my doctor says that stuff will kill you." He said, "he's right it will kill you, that's one less Lyme patient we have to deal with."
I laughed. This was one of the first things he said to me. Ha Ha
Posts: 2232 | From USA | Registered: Aug 2009
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posted
Having sex with my husband every night would help me sleep better, then I wouldn't feel so tired daily.
This was a psychiatrist. Oh, my husband LOVED him!!
Posts: 893 | From Florida | Registered: Dec 2008
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steve1906
Frequent Contributor (1K+ posts)
Member # 16206
posted
Last year I had one of my worst chest/heart pains I've ever had. I really thought I was having the BIG one so went to the ER...I never went to the ER for chest pains before this visit.
The ER doctor didn't really find anything wrong with me (surprise -surprise). But he must have believed how much pain I was really in because he said I would be spending the night at the hospital.
They did all kinds of test and blood work all night and I guess they found nothing.
In the morning I had 3 or 4 different doctors come in and talk to me. They must have had a meeting together before talking to me> they all said basically the same thing (WHY ARE YOU HEAR-YOU KNOW THERE IS NOTHING WRONG WITH YOU).
One of them even said you know there is nothing wrong with you and wanted me to tell him the I was lying about the pain!!! I TOLD HIM TO GO F... YOURSELF AND GOT UP AND LEFT... I ALWAYS RECPETED DOCTORS TILL I GOT LYME...
posted
My GP at my first visit to her, about 2 months after my tick bite--I removed the tick when I noticed it after 3 days, then started having what I later realized were Lyme symptoms within a week after that.
I told her about the tick bite and my symptoms, and asked her if I might have Lyme disease.
She rolled her eyes and laughed and said, "You do NOT have Lyme disease. We don't have that around here. You must have caught a cold virus. Go home and take some Advil."
I protested that I have never before been sick in the summer,
that I have never caught a virus that did not provoke respiratory symptoms due to my asthma--much less twice within 6 weeks (fever episodes), and
I did not know anyone else who had been sick who could have passed it to me or gotten it from me.
I started explaining more about the timing of the tick bite and my symptoms.
She interrupted me and started telling me I did not understand how viruses worked, and if I had been exposed to one, then I would definitely get sick with it, regardless of whether my immune system was strong.
I wondered why she thought that same reasoning didn't apply to bacteria from a tick bite that I KNEW I was exposed to?
Thankfully I kept insisting and got her to give me some antibiotics while I found my own LLMD, and now have a proper diagnosis and am on proper treatment.
-------------------- Don't forget to laugh! And when you're going through hell, keep going!
Bitten 5/25/2009 in Perry County, Indiana. Diagnosed by LLMD 12/2/2009. Posts: 756 | From Inside the tunnel | Registered: Jan 2010
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posted
When my husband saw an "infectious disease specialist" and told him his symptoms, the doctor said, "Some people are just really tired for a year".
Posts: 25 | From New York | Registered: Feb 2009
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sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
Cardiologist told me that people with Mitral Valve Prolapse, just notice every little thing in their body.
Posts: 4035 | From Mississippi | Registered: Jul 2008
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posted
My daughter has been having singular symptoms for about 2 1/2 years, very easy to dismiss as other causes (sports injuries, growing pre-teen, strain, sprain, pulled muscle, low iron, over-did activity, etc, etc). Nothing clicked that it was more than "usual things" until symptoms clustered in Aug of 09 and all of a sudden I thought JRA.
First stop, pediatrician. Lab work ordered, everything is in range, they don't suspect JRA. I tell them that something still isn't right, and that the tests must be false negative because something is going on. They suggest a ped rheumatologist.
Well known children's hospital, chief of rheumatology. Does clinical exam, orders some more lab work, and a foot xray for my daughter's deformed toe (that has gotten progressively worse over the few months before we saw the dr). Xray negative, so on to bone scan. Bone scan negative.
By this time, another mother who was kind enough to email after I posted on an email list (not about Lyme), suggested that I might want to look into Lyme since I had mentioned my daughter was chronically ill. (We start researching).
In the meanime, the rheumatologist sends us to a physiatrist saying it's not JRA, probably FMS, but she doesn't have the credentials to dx that.
Go to physiatrist, they do clinical. They state that the rheumatologists developed the criteria for FMS, they don't know why she didn't either dx it or rule it out. Physiatrist can't help.
Back to rheumatologist. I push for a Lyme test, very reluctantly she orders one. However prior to ordering the labs, she says, "Have you ever even been to Connecticut?" (in a very derisive tone).
Now the funny thing is, I looked her square in the eye and truthfully stated that "Yes, we camped in the state parks there in Aug of 2006"
She answered with the statement that she didn't think it was Lyme, but to make me happy she would order the testing.
We left with an order for the labs and a referral to a pain mangement clinic.
We never went back. (And I also don't have much faith in Children's Hospital anymore.)
Posts: 19 | From Michigan | Registered: Feb 2010
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posted
Before both my girlfriend and I were diagnosed with Lyme, we found ourselves in the emergency room sometime after midnight in a small CA coastal hospital. My girlfriends heart raced up to double her normal rate and stayed there for a week.
We still don't know what to think of this doctor. He told my girlfriend she was fine and that she was just stressed, and needed to learn how to express her emotions. We will always remember how he said, "Get a journal. Jot it down. Burn it. Let it go." My poor girlfriend is stripped down to a hospital gown, terrified at 1 in the morning, is actually struggling with some of the most unnerving symptoms of Lyme, and he says let it go.
Oddly enough, when I explained to him some of the symptoms I was having, he told me flatly that I probably have Lyme Disease, I should get a Rife machine, and move on.
Apparently he came from a family of osteopaths, and he had to work the midnight shift to pay his college debt, but he couldn't wait till he could quit and start his own business as an osteopath.
Weird.
This guy is just a New-Agey twist to an old theme: Which is the God Complex most doctors have. They think they're first instinct is right, and when people exhibit symptoms they don't understand, instead of listening and learning, they privately or publicly condemn you as a crazy.
Posts: 19 | From Oakland, CA | Registered: Feb 2010
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"Is she depressed?" our response: not until she couldn't get out of bed because she is very very SICK his reply: "oh"
"Are there problems at home or school?" our response: what? his reply: "well you know, arguing in the household, boyfriend problems..." our response: do you know any family that doesn't have the occasional argument? Do you know any teenager who hasn't had a boyfriend or girlfriend problem? And, do you really think that either of these things would cause an active kid to go from 100 to 0? his reply: blank stare due to reality smacking him in the head
"Lyme is cured in 3 weeks" our sarcastic response: that's awesome...please tell us who cures lyme in 3 weeks--we'll be at his office tomorrow morning. his reply: doesn't look at us and changes the subject
and tada, famous last words spoken by one doc:
"I don't know what it is, but it's definitely not Lyme"
our response: "So if you don't know what it is, how do you know it's not Lyme? Please tell us what you think it might be so that we can explore that further" his reply: made believe he didn't hear us and moved on quickly to the next question.
School district quotes, equally ridiculous:
"I think it's all in her head" our response: um, no and here's some stuff for you to read their reply: took the literature and probably just threw it out
"She needs to see one of our psychiatrists to rule out other issues" our response: um, no their reply: "we recommend this" our response: um, no...again, a little louder in case someone didn't hear us the first time
"What does she do all day?" our response: what? their reply: staring at us, waiting for an answer our response: she sleeps, sleeps, sleeps, eats, tries to do her schoolwork and then sleeps, sleeps, sleeps. their reply: "Oh" our response: heavy sigh, eyeroll and throwing hands in the air.
If all our experiences weren't so pathetic and disturbing, it would be funny, wouldn't it? Maybe one day we'll look back at all this and be about to laugh at all this ridiculousness.
[ 02-16-2010, 12:59 PM: Message edited by: Alana ]
Posts: 214 | From where ticks flourish | Registered: Dec 2007
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posted
A month after my PCP diagnosed me with Lyme and immediately put me on amoxicillin, I went to the local Infectious Disease guru who told me flat out, "You don't have Lyme." When I told him I had the classic bulls eye rash, swollen glands, exhaustion, sore creaking joints, shooting pains, tinnitus and vision problems he said, "That could be any number of things."
When I said I had done research online, he laughed and said, "You shouldn't believe what you read on the web. Those people are just chronic whiners looking for attention. Here, I'll give you the name of my friend who is a rheumatoid arthritis specialist. He'll help you."
He also said there was no such thing as chronic Lyme and since my test was negative, I definitely didn't have Lyme. Aaarrgghh!!
-------------------- Never give up! Posts: 7 | From Gloucester, MA | Registered: Jan 2010
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posted
Well, other than having 4 neurologists and 1 rheumy all telling me that under no circumstances was it even remotely possible that I have Lyme, I think my overall favorite came from my PCP.
After visiting her about 1/month for a year with my concerns, I finally knew to request a Western blot (I was negative on the ELISA 2 or 3 times).
She refused, on the grounds that "It's too likely to give you a false positive."
Yeah, yet she had no problem putting me on oral steroids without knowing what was wrong with me.
And I live in an endemic area, and have lived in them all of my life.
Posts: 455 | From Was in PA, then MD, now in the Midwest | Registered: Nov 2008
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posted
my favorite was from the idsa doctor as she read me the results of my blood tests and said there is no lyme disease in illinois. so why are you here, as I sat there sweating like I was in a sauna and shaking like a hooker in a convent she then asked me why are you sweating like that when she and her nurse both had on heavy sweaters and were freezing. I replied as I got up and walked out of her office what do you think im here for in the first place your supposed to be the doctor. two weeks later I was diagnosed with babesia!
Posts: 294 | From sw chicago suburbs | Registered: Apr 2007
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lymebytes
Frequent Contributor (1K+ posts)
Member # 11830
posted
I have learned ONE thing, when an MD tells you that you need to see a shrink, that is it, they can't figure out what is wrong and it is Lyme. It happened w/my son and husband too and as soon as they recommended it was all in their heads, I KNEW they had LD too and they did.
There are too many to count. I actually posted the illiterate responses on my website (below). I copy and pasted a few from my site many stupid things doctor's said and did in search of my answer.
"Stop reading the internet and let ME be the doctor!!!" "Oh, please none of the pain makes sense, get a life, you are fine, here go see this chiropractor". "Numbness on one side of your body, that doesn't make sense and you sound crazy saying it" "Are you ready to talk about your emotional problems" Dr. Can I please see a neurologist? "No, we know what this is and so do you". What is it? "It is anxiety". "If you smoke stop and you will be fine, I tell everyone with any problem that is the answer". As I sat crying, a Neurologist shrugged his shoulders and patted me on the back "I don't know what's wrong, hope you feel better soon!" "Well we have tested you for everything, it can only be anxiety, depression or fibromyalgia" When I shot back an angry look he said, "Well, maybe I don't know you well enough to say that, but there is NOTHING else it could be!" "You have tender points it is fibromyalgia" Hospital visit - "Why are you on pain meds? That is ridiculous, this is obviously a chronic stomach issue, follow up with your primary". Lastly I insisted on an LD test and to be given antibiotics while the test was pending. 2 weeks later the doctor called "'Your lyme test is negative, did the antibiotics help" I said, "No, I felt worse." Doctor response "Then it obviously isn't lyme". "You are very high strung, obviously it is anxiety, just look at you" (I could barely walk now at this point and I was losing function I was hysterical)
posted
The Neurologist I saw told me, "At some point, someone is going to tell you that it's Lyme Disease - but you don't have it."
In retrosepct, it was a herx but after treating me with Ceftin for six weeks the Infectious Disease doctor said, "Well, it's not Lyme then. Clearly you're a mess."
But the topper for me was the John-Hopkins guy. While asking about various issues, environment, etc., he through a curveball question in - "Do you ever experience guilt?" and then proceeded to tell me my problem could only be depression. His reasons were because: 1) I've stopped doing the things I like to do (ignoring the fact these were physical activities and it became too painful to do them) 2) I experience guilt. 3) I was emotional. 4) My Quest Lyme test was negative. 5) And because Lyme is hard to get and easy to treat.
-------------------- ---------- Danni Posts: 311 | From Glen Mills, PA | Registered: Jan 2009
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17hens
Frequent Contributor (1K+ posts)
Member # 23747
posted
#1. FP to me - "I realize you have the tick you pulled off your back but I don't believe it is a deer tick. And I realize you have a bull's eye at the bite site, but I don't believe you have lyme. I believe you have arthritis but since you insist on antibiotics, before I will give you 3 weeks of doxycycline, you must sign here saying you won't sue me if you end up with liver damage, and sign here saying you won't come back to me if you don't feel better."
#2. ER doc to me (about my 7 yr old daughter who had started abx. the day before when she was diagnosed with lyme due to waking up with 13 bull's eyes on her torso)- "She doesn't have lyme. We don't have lyme disease in Pennsylvania."
(1)While in ER with crushing chest pain and pressure, shortness of breath, nearly passing out, racing heart,sky high BP. "It's all in your head and you've convinced yourself that you have this mysterious thing -like med students when they are studing think they have rare diseases. Stop reading on the internet. You're just stressed out dear, go home and have a hot cup of tea and try to relax. I know someone who can probably teach you biofeedback - that might help."
(2)"Lyme isn't in WV." from ID Duck. I live 8 miles from the Pennsylvania Border. Ticks are apparently able to recognize borders.
(3) From a very nice endocrinologist after a two hour appointment,"Well you're definitely sick. I don't think it's anything I can help you with though. You'll either get better, Stay the same and learn to live with it, or get worse and someone will figure it out." - Way to cover all the bases Doc!
AND MY FAVORITE... (4)"Lyme? Did you get bitten by a DEER?" (YES!REALLY!) This was from the RN in a quack's office. After recovering my ability to speak, I patiently explained that the deer don't bite you - ticks do. She still wrote on chart, "Bitten by deer."
Posts: 237 | From WV | Registered: Mar 2007
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posted
My daughter was diagnosed with Lyme after 6 to 8 weeks of fevers and muscles aches followed by Bell's Palsy and a CDC positive test. (there was a known tick bite)
5 months after that I ask my pedi about how he would evaluate for re-infection due to her getting more ticks bites.
He send me to a pedi ID doc at the only children's hospital in the state. There I am told: "She probably never had lyme and if she did she is immune from geting it again"
Why did she never have lyme? Because her IgG Western blot never converted to positive and "all my lyme patients with Bell's Palsy have had a positive IgG after this many months"
And the getting "immune from lyme" comment? I just don't know what they are thinking
Interestingly they also said that perhaps she did have lyme and that her IgG never was positive because of early anitbiotics intervention blunting the immune response. but then no ID ever says that about anyone else's test (ie negative due to early antibiotics)
Posts: 207 | From NH | Registered: Jul 2009
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