1. "there has never been one documented case of lyme in kansas city" -ID's secretary
2. "youve been tested and the drs cant find anything wrong. its time you see a psychologist" - my so called mom even though she knew that before i got sick i hadnt gone to a dr in 10 years.
3. ``just come on over if you get sick I can just give you some chicken noodle soup'' my brother followed by laughter by my sister
4. the worst was after being very sick for weeks i finally went to the ER not knowing what to do. later that afternoon my PCP's test for lyme came back positive so i went to see him(i had to ask for the lyme test). he asked me how i was doing and i said "not very good, went to the ER this morning" he looked at me like i was a complete idiot and said "now why would you go and do something like that" i want/wanted to choke his eyes out.
-------------------- sick since 9-09 igg, 18,23,41 reactive igm, 41 reactive Posts: 436 | From Kansas City | Registered: Jan 2010
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posted
My daughter had a clear bulls eye rash, high fever, and intense right knee pain, our Johns Hopkins-trained, top-ranked Pediatrician treated her with a 30day antibiotic and then declared the Lyme to be gone. We had to return 5 months later with right knee pain so severe, she cried herself to sleep at night for three weeks. The doctor to my daughter: "I think you just hit your knee against something very very hard."
Posts: 3 | From Lehigh Valley, PA | Registered: Oct 2008
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posted
The first doc I went to see when I began feeling sick was my other pcp. I was so out of it I could barely communicate what was wrong with me.
I went in to see her, filled out a form checking off all of the symptoms I was having (typical lymes symptoms)-
the nurse asked me what my greatest concern was and I told her extreme fatigue, joint and muscle pain. gave her the form... she gave me a physical, supposedly looked at the form I filled out, talked with the nurse, checked my heart, etc... then looked up at me: well, you look pretty good and ..you don't have any joint or muscle pain... I think you're fine! maybe you need a vacation
-------------------- PHOENIX: mythical bird that rises from the ashes July '09 got sick very quickly could barely get out of bed - ND diag lymes.. and the journey began bite: unkown - no rash Posts: 248 | From private | Registered: Jul 2010
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posted
This thread rocks! I LOVE the "did you get bitten by a dear?" OMG, that would make this all so much easier! We would all have known right away we were slymed!
-------------------- PHOENIX: mythical bird that rises from the ashes July '09 got sick very quickly could barely get out of bed - ND diag lymes.. and the journey began bite: unkown - no rash Posts: 248 | From private | Registered: Jul 2010
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posted
My daughter had been seeing a psychiatrist because she became very depressed after years of being sick and everyone telling her it was either constipation or telling me to just make her go to school.
So off to the shrink we went. He gave her meds for depression. Now she was still sick, but no sad anymore. The Dr said to make her go to school, that she was faking her fever.
The next time we wanted a referral to infectious disease clinic at children's hospital, the pediatrician didn't want to refer her becasue the unexplained fever was depression.
Fast forward six months. After my daughter tests CDEC/NYS positive IgM for Lyme my husband brought a copy of the lab report for his record.
He looked at it and said you don't have Lyme. Then he took my daughter into her appt. and told her that her parents were trying to kill her by making her take abx, and that the LLND was just out to make money off of her! Sad but true!
Posts: 333 | From Lyme Here Too | Registered: Mar 2010
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posted
I had a history of over a dozen symptoms going back a year and only after coming down with chronic uveitis the opthamologist ran a barrage of infectious disease tests due to my 2 years travelling the world.
Got no word from the hospital after 2 months so I went to the opthamologist and insisted he get me results right now!!
He came back and said " We have good news ....you came back positive for lyme disease....Its a good one to have....very treatable now go down to the ID department and they will help you"
Went to ID department " WHO SAID YOU HAVE LYME?"
ID consultant walks in with hands in pockets...Says "lyme only exists in black forrest region of Germany and east coast US (as apposed to the jungles of Laos and Cambodia)....You must have got it last month in Germany"(despite illness going back a year).
Gave me 2 weeks of doxy 200 mg a day. After 5 days on doxy my whole body goes berserk. I call ID and tell them the meds are making me worse. The girl on the phone says "come in"
I try to explain I have become ten times worse by the antibiotics and I have awful fatigue and neuro symptoms now.
"You don't have lyme anymore you have post lyme syndrome" Despite still having the chronic Uveitis that landed me there in the first place and now a million other symptoms and had a textbook herx to the doxy.
I insist I need a western blot "he says we dont do that here"
ID doc:"2 weeks of doxy kills all spirochetes"
Refers me to neuro to get my head examined.
It was only after 3 months of requesting my bloodwork did I actually find out I was also IGG positive for Bartonella and the doxy only sent the disease neuro due to under treatment.
6 months later at the neuro despite all this blood evidence of TBI and being disabled and unable to work:
ME: "Antibiotics make me ten time better and I think I have neuro lyme".
Neuro: with 3 junior neuro groupies in the room Laughed and said "you only think they make you feel better".
-------------------- Pos BB and Bart(Q & H IGG pos) Began treat 1 year after start of illness. Diagnosed Feb 2007. Posts: 648 | From Ireland | Registered: Jan 2007
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The first neurologist i went to (this was long before any dx) on about the 3rd visit looked me right in the eyes and said , can you bring this on yourself ? I never went back.
-------------------- Wishing us all well ! Posts: 99 | From Southern Illinois | Registered: Feb 2010
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BoxerMom
Frequent Contributor (1K+ posts)
Member # 25251
posted
ID Doctor #2 "Lyme only occurs in sick deer- it is not transmitted to humans."
-------------------- "Courage is not the absence of fear, but rather the judgement that something else is more important than fear." Posts: 16 | From Austin | Registered: Jul 2010
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Neuro told me the increase in size and number of the lesions on my brain were from: "magic".
Posts: 113 | From CA | Registered: Jun 2010
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posted
ER Doc: "Did you do cocaine. All your symptoms look like cocaine"
(Test results come back negative for cocaine)
Doc: "Are you sure you didn't do cocaine. Your young and healthy, and your blood work is fine"
(Receives 15 mg horse tranquilizing dose of Ativan per 24 hours while in and out of ER for a couple days).
Doc: "You've received a lot of Ativan. You might want to figure out how to get yourself off that stuff. You must be dependent."
(I explain my normal dose of Ativan which was about 1/5 the amount/day)
(I suddenly have the strongest feeling ever that I was dying. Infused with 3 mg of Ativan, and still agitated.)
Nurse: "Well, you obviously have a lot of anxiety. I've had anxiety before. You just have to learn how to relax."
----------
Anyways, I was havin a really rough time already with neuro/neuropsych symptoms and had an ADR to an anti-psychotic on top of it that caused all this. Adverse drug reaction was printed on my first discharge sheet. Interviewed by psych hospitals several times and each interviewer labeled my condition as non-psychosomatic organic anxiety.
Most doctors still tried to blame me for my anxiety at the time, ignoring the fact that I was interviewed for an hour and had an ADR to an anti-psychotic that lasted several days. The docs typically saw me for less than 5 minutes.
The fact that I couldn't exercise, had bouts of SVTs in the hospital, and couldn't exercise for years was my fault as well.
Oh, and say the word Lyme to a ER doc; forget about it. It's a bad word. I just say I'm infected with neuroborreliosis as that word seems to go over most ER docs heads.
Posts: 967 | From A deserted island without internet access | Registered: Sep 2009
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doctor: this is OBVIOUSLY a mental problem and you are wasting my time. i am used to helping people who are actually dying!!!
nurse: here's some suicide hotlines. if you think about killing yourself this weekend please feel free to come back here Posts: 220 | From Kansas | Registered: Mar 2010
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quote:Originally posted by BoxerMom: "You need a soul retrieval."
Actually wrote me a Rx!
So where did you go to fill it? At the sole (soul) pharmacy in town?
Posts: 13116 | From San Francisco | Registered: May 2006
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littlebit27
Frequent Contributor (1K+ posts)
Member # 24477
posted
My PCP looked at my blood work ordered by my LLMD one day. He says...
Doc: "Oh, mycoplasma-that's rare-no one gets that, and since your blood work on your body fighting an infection is normal it's nothing to work about-it's not THAT high"
Me: "Um, ok..."
Doc: "Chlamydia Pneumonie, this is women problems, means you have vaginitis, you've been exposed to the STD (then looks at my husband)"
Me: "Um, no, it's says Pneumonie, it's like any other pneumonia, has nothing to do with an STD. You catch it from people coughing and sneezing."
Doc: "No, no, it definitely means you've been exposed to Chlamydia. So you have Chlamydia."
REALLY?!?!?!
He has also told me Lyme doesn't exist in GA. People with ehrliclia are much more sick than me with a high fever and a couple day of abx takes it away.
Then goes on to say LLMD's are only out to steal people's money, but who is he is to argue with success. What??? That didn't even make sense.
He is so stupid.
Someone really does need to make this into a book.
posted
When I went for an evaluation to see if I qualified for disability. I saw a Psychiatrist who told me that my problem was I needed to be more social, make friends and hang out at Starbucks. All I needed was some social interaction!!!!!
Posts: 366 | From Louisville KY. | Registered: Nov 2003
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Called the doc asked her to do a Lyme test. It Came back positive. She ordered 14 days of Doxy. Several days later I got 2 letters cancelling my appts for the rest of the year.
I had just had blood work done and my triglycerides were 715. Keep in mine I weight 125 lbs. No diabetes or anything else that goes along with high trigs. Even though she had cancelled my appts I needed to find out if I had gotten them down. So I called for an appt to find out. (They had gone down to normal on Lovasa.)
She just pretty much ignored me with her nose in the computer screen. I told her I wanted to talk about the Lyme test. She said "yes you have Lyme!" with a hateful tone. "it's right here in front of me. You do have full blown Lyme."
Me. "Well what are we going to do about it?" Doc. "I have treated it. It's gone." Me. "No it's not I'm still sick." Doc. "All the symptoms you have are from depression" I proceed to tell her that other how sick I have been and other drs. said it was either Fibro or RA they didn't know. They did lots of tests ruling out MS etc. etc.
Then I say "I'm not a doctor but I know that Fibro doesn't cause HIGH fevers and RA doesn't cause HIGH fevers and depression doesn't cause HIGH fevers. It's the first thing that has ever come back absolute and I want to treat the LYME."
Well by then I was crying and she says "See there, you're depressed."
Me. "it's not depression, I'm crying because I'm crying out to you for help and you won't give it." There's a lot of conversation left out here but you know the drill.
Anyway, she determines she is not going to do anything further. And makes the comment "I cancelled all your appts. You didn't have to come back!"
She offers to refer me to a ID and I tell her I don't need her referrals. I start to walk out crying uncontrollably.
She says "But you need help."
I turned to her and said "YA THINK!!!!!!"
When I got out I looked at my check out sheet and she had written in big letters. NO COPAY NO APPT.
There were a lot of people standing at the check out window. I walked up slammed the paper on the counter right in front of the others waiting in line and reiterated NO COPAY NO APPT!!! and walked out.
I now have a good doc and am on IV Rocephin no thanks to her. Oh yeah...I got a questionaire a few days later from the clinic where she works wanting to know about my visit with her. HUM what should I say?
Well I'm not like her so I guess I won't get to down and nasty. I'll just pray....heaping coals of fire on her head.
-------------------- Life was meant to be lived.....One must never, for whatever reason, turn his back on life. Eleanor Roosevelt Posts: 14 | From Georgia | Registered: Jun 2010
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I found out a lot of charts said I had an undetermined amount of functional overlay. When I read that, I had no idea what they were talking about.
Then I found out it's doctor code for the patient is complaining as a way to get out of facing life's responsibilities. Get it? That's the secret function of our complaining.
Yeah, right. I think life's responsibilities are easier to handle than what we've been put through.
To be replaced with "Doctor shows determined amount of nonmedical BS..."
Posts: 13116 | From San Francisco | Registered: May 2006
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posted
While seeing a LLMD...he asked when we would like to come back for the next treatment. He usually waits 3 months but with patients who have an ALS dx, they could be dead by then.
Yup, he said it. and Yes, my husband has that dx.
Without thinking I said, well you could be dead too.
My poor husband didn't know if he should hold me back, say something or what.
We no longer see him. Posts: 23 | From Pennsylvania | Registered: Jul 2010
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posted
You look great! Go out and enjoy life! versus You live in New York City - how could you have Lymes? (it's the added -s that really made me scream!)
Posts: 277 | From NY | Registered: Jun 2005
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'Kete-tracker
Frequent Contributor (1K+ posts)
Member # 17189
posted
I asked my PCP, "But what's right There??..." (I was pointing right at the Constant pain near my lowest rib, just to my right of center) "...about 1 1/2 inches in?"
"Nothing!" he replied.
(No tests to view the area ever ordered. No X-ray, MRI, ultra-sound, CT scan... zippo)
But I give him credit for eventually Dx'ing me w/Lyme, based on W.Blots from Quest (Thanx, Immune system!)
Posts: 1233 | From Dover, NH | Registered: Sep 2008
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'Kete-tracker
Frequent Contributor (1K+ posts)
Member # 17189
posted
The 'top doc' present in a local E.R. upon being told (by me) that I had recently been diagnosed with Lyme disease... In a disgusted, highly suspicious tone: "WHO diagnosed you with Lyme disease?"
"My Primary, Dr. B----- in Dover. CDC+" I replied. Dead silence... & walked of to check on another patient as I was being wheeled into an exam room.
Posts: 1233 | From Dover, NH | Registered: Sep 2008
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Really? Would the thousands living in MO with Lyme Disease agree?
Posts: 71 | From Missouri | Registered: Jun 2010
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Tricky Tickey
Frequent Contributor (1K+ posts)
Member # 26546
posted
While seeing my GYN doc for my yearly check up, he noted the meds I was taking (Doxy/Flagyl). I had previously sent my original test results to him for a referral to a ID doc (when I was unaware of the controversy) so he had seen my results. I explained my treatment & that I was seeing a LLMD. He said,"Your test showed you don't have Lyme. You were only positive for 1 band....you must have 3 or more to be positive." I replied, "Sure doc...I realize that but the tests are inaccurate." Later, while in his office going over my exam, I informed him that I, in fact, DO have Lyme & wanted him to be aware of the controversy as I attempted to explain it. He gave me a pompous look. I said, "Five years from now when the lid blows off this thing you're gonna remember this conversation & realize I was right.....a lot of these women have it....." He continued to give me a blank stare, looking right though me, no emotion, stoic, unbelieving. He's retiring this year. More power to him.
-------------------- Early Disseminated LD- 2010. Currently doing acupuncture and yoga. Negative Igenex (IND & Pos Bands) ISSUES AFTER: Tendonitis, letter reversal, Low immune system. PREVENTION:SaltC,Iodine,Humaworm, Chiropractic. Posts: 1013 | From In a van down by the river. | Registered: Jun 2010
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Tricky Tickey
Frequent Contributor (1K+ posts)
Member # 26546
posted
Here's one more. I emailed a microbiologist from UAMS who's special study was in Lyme. This is his only part of his reply: "....there are no Lyme disease specialists at UAMS. This is in large part due to the fact that Arkansas is not an area where Lyme disease is considered to be endemic." Hahahahah!!! Not an endemic in Arkansas!???!!! What a joke! There's so many people who have it in the NW part that almost all families have at least 1 member affected. No kidding.
-------------------- Early Disseminated LD- 2010. Currently doing acupuncture and yoga. Negative Igenex (IND & Pos Bands) ISSUES AFTER: Tendonitis, letter reversal, Low immune system. PREVENTION:SaltC,Iodine,Humaworm, Chiropractic. Posts: 1013 | From In a van down by the river. | Registered: Jun 2010
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1st I went to him with heart palpitations, trouble breathing, etc. He told me it was all anxiety and that next time I get that feeling I should pop a xanax. He went on to say that after doing so, if I go to a bar, I should only have 1 or 2 drinks or I will surely wake up in some hotel room naked next to some guy I don't know!
2nd I had mentioned that I was dieting and still having trouble losing weight (I have never had a weight problem) so I suggested maybe it's my thyroid. He said "all women who can't lose weight say that. you just need to exercise"
-------------------- Lyme IgM: +31, +34, +41, 23-25 and 83-93 are Indeterminate.
Currently taking Oral Biaxin and Bicillin Injections. Posts: 47 | From New York | Registered: Jul 2010
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1) I had a ID doctor (who was supposedly LL) call me a "drug seeker" when I asked if he thought I should give abx another go...
2) After my stroke my PCP told me it was "all in my head". Once I found out I had had a stroke, I have to admit I found that rather humorous cause...yeah! It WAS in my head! lol
Posts: 415 | From Canton, GA United States | Registered: May 2004
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posted
I will tell you few. The first time I brought lyme to my primary doctor, he said... "Listen, what are the chances of finding a zebra in your back yard when you go home." I said, very low chances. And he said, "Zero chances, that's how it is with lyme."
I went to a bone specialist and told him that I am sure it's lyme. He laughed and said, "If it is lyme that means you got bit by a tick and got a rash on your foot. There are some people out there who call themselves lyme specialists, just to waste your money and time. There have not been one case reported here".
Oh, how much I wanted to punch him.
Another one, Lyme does not exist in Southern California. Stop stressing out and you'll be fine.
A one my dad told me... "Take a swimming class and you'll be cured. If you think positive, you'll be cured"
-------------------- Ema Posts: 394 | From Southern California | Registered: Jun 2010
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posted
OMG! Luvema...are you my sister my dad never told me about???!!! LMAO! My dad CONSISTENTLY tells me that I rely too much on "western medicine" and if I just "think positively", "lose some weight" and "exercise regularly" I'll be all better and won't have Lyme Disease anymore. I think I DO think postively (hey I could hole up and cry over my fate in life constantly and I only do that like once a year! ;-) lol), I'm not THAT overweight and I was barely overweight at all when he started in on me about it, and I don't know about you guys, but both LLMDs I've been too very much warned me about too much exercise...
Posts: 415 | From Canton, GA United States | Registered: May 2004
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BoxerMom
Frequent Contributor (1K+ posts)
Member # 25251
How about the one about the doctor saying there's no Lyme in Canada because, drumroll please, "ticks don't cross the border."
Posts: 13116 | From San Francisco | Registered: May 2006
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tickled1
Frequent Contributor (1K+ posts)
Member # 14257
posted
My GI doc told me if I had another child maybe it would make me feel better.
Posts: 2541 | From Northeast | Registered: Jan 2008
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tickled1
Frequent Contributor (1K+ posts)
Member # 14257
posted
I actually have tears in my eyes reading these....
....not from laughter.
Posts: 2541 | From Northeast | Registered: Jan 2008
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-"You need to blow in a paper bag." In response to me passing out regularly and having numbness in my extremities.
-A Mayo Clinic neurologist told me the cause of my nerve pain was restless leg syndrome. I never even mentioned anything about my legs.
-In the ER with extreme abdominal pain--we now know it was liver related--"You know you didn't have to come to the ER to get into the clinic upstairs, right?" Yeah, kind of in extreme pain, and I am not dumb. They then sent me home in extreme pain. The nurse felt awful and said "Y'all don't LOOK like drug addicts."
-After telling one dr I had 9/10 on the pain scale, he said EVERYONE has pain sometimes. Thanks for the head's up, doc.
-Most commonly, it is just the complete arrogance and attitude from them on a regular basis. Geez.
-------------------- You name it, I've got it. Full-time medical anomaly. Posts: 432 | From Southeast | Registered: Aug 2011
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nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
Someone should make this a book!
So the internist said, "Your blood work shows you have a chronic infection. However there is no lyme disease in Montana - I just don't see it - so I don't treat it.
I said, " You believe there is no lyme disease in Montana so that is why you don't see it".
He said, "yes that is right. I don't see it".
I said, "here I am in Montana with lyme disease. I tested CDC positive and never left the state. Are you seeing me?"
I am shown the door.
I don't know if we should laugh or cry. Maybe both.
-------------------- 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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ktkdommer
Frequent Contributor (1K+ posts)
Member # 29020
posted
When I first started getting really sick, a rheumatologist told me I was allergic to soccer after I explained I feel so sick after being outside in the sun watching my sons play soccer. He changed his mind when my ANA came back elevated.
My son's pediatric gastroenterologist told me that my son would be fine now that I knew he was fine. He showed me pictures of his nice pink colon. Wow! I couldn't even respond.
ER said we needed to get on with our lives and that sometimes this helps. Thank you ER!
Recived a certified letter from PCP stating that she was dropping the family after I inquired about IgeneX testing. She stated we no longer had a two way communication. I knew that long ago.
-------------------- Things are never dull. After 3 fighting Lyme, 2 are in remission. Youngest is still sick, age 22. He has new diagnosed Chiari Malformation and Ehlers Danlos Syndrome. Posts: 1366 | From Perrysburg, Ohio | Registered: Nov 2010
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sammy
Frequent Contributor (5K+ posts)
Member # 13952
posted
The first ID doc that I saw said that I was "too young to be sick" (I was 21yrs old). I remember telling him that I was concerned because of my symptoms and that I had lost about 30lbs in less than a month, he said that I was "too pretty to be sick".
The ID doc said if I ever needed to talk with him to just pull him aside in the hallway at the hospital where we worked, no need to make another appt. (I was too sick to work at that time...)
I was too shocked to know how to respond to all of that. My PCP, GI, neurologist, and surgeon had all thought that I needed an ID referral. Surely an ID would be interested in a previously healthy young person who fell ill right after returning home from a foreign country? Wow!
I thought that I had started getting used to the rude comments about Lyme and such but every now and then a doctor surprises me.
Not too long ago I had a hematologist write in his report that I did not make eye contact with him at all during the appt. It was a report full of inaccuracies and inappropriate comments. My LLMD sent me a copy because he was shocked, he knows me well, that hematologist didn't take a second to look or listen to me either.
Posts: 5237 | From here | Registered: Nov 2007
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Summer3
Frequent Contributor (1K+ posts)
Member # 35286
posted
I had a family doctor tell me that I had a negative attitude towards food. I don't know how he determined that since he never asked me any food related questions...........
A rheumatologist told me that there has never been a case of Lyme bacteria surviving past 28 days of antibiotics. He said I had been over treated and he wouldn't have even given me a week of antibiotics. This was after many known tick bites, a rash, high fever and almost every Lyme symptom possible. He also told me there are no co-infections in my state. He didn't seem to care that I had recently traveled down the entire East coast of the US by car.
I asked him "So what can I do for all of these symptoms? They have been getting worse."
Razzle
Frequent Contributor (1K+ posts)
Member # 30398
posted
GI doc, after I'd mentioned that my Husband had a rare GI disease: "Don't research things that don't concern you." -- Huh? My husband's disease isn't my concern, even though I'm his caretaker???!
Hospitalist: "We know you can't fake these blood test results" (blood gas test showed ketoacidosis...because I couldn't swallow even my own spit for 5 days) - yet they still insisted I had somatoform (i.e., faking)!
After I got a CDC positive Western Blot (drawn at local hospital & sent to Mayo), I was sent to an ID duck:
ID: "There is no Lyme in Wa. The test is false positive. If you were in Oregon, then it would be Lyme. The positive bands are cross-reacting with something else." Me: "What would it cross-react with?" ID: "I don't know."
Allergist (previously, I'd respected this dr. a whole ton because of how outside-the-box he was with allergy stuff): Yells at me for at least 5 minutes about how Lyme isn't chronic, there's no Lyme here, etc.
This same Allergist sent me to a GI doctor to get a feeding tube placed. When he sent records to the GI doc, he sent 1 report, filled with ranting about how I couldn't possibly have Lyme and all the cr@p he'd yelled at me in the appointment. I couldn't believe it when I saw it!
Needless to say, the GI doc didn't want to have anything to do with me and promptly told me there was nothing he could do for me and referred me to Mayo.
Before Lyme Dx, I was constantly being told my symptoms were all in my head.
-------------------- -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
"You can't have Lyme, you live in New York City" despite the fact that he knew I grew up in Maine and had a weekend beach house on Fire Island, NY!
Posts: 277 | From NY | Registered: Jun 2005
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posted
Latest remarks that have been told to me by my PCP ~you gave gained a lot of weight, look at this graph! (I mumble something about how hard my life has been with all these symptoms and my feet hurt so it is hard to exercise while i am in pain) ~You mean you can not control yourself and what you eat? ~I will not give you a referral to that (LLD) doctor because I do not respect his work. ~you do not have Lyme, but I will give you the name of an infectious disease doctor for another opinion. (I declined knowing that the Infectious disease doc would fight with me too. All I have been asking for is a Western Blot. everyone says no!
Posts: 65 | From Just Maine | Registered: Jul 2012
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gigimac
Frequent Contributor (1K+ posts)
Member # 33353
posted
Gotta love this thread!! I'm sure this will be an immensely long one.
The last doc I saw said only 1 in 1000 people who have untreated lyme become chronic and that chronic lyme was rare even up in Massachusetts and that we didn't have it here in NC.
He basically called my llmd a quack and practically forced me out of his office.
Other doctors have said: You don't have lyme, you are spending too much time online. (Thank God I did spend so much time online or I would never know what is wrong with me)
Posts: 1534 | From Greensboro NC | Registered: Aug 2011
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Dogsandcats
Frequent Contributor (1K+ posts)
Member # 28544
posted
The last rheumy doc I saw looked at my records and only could talk about my pain meds, I said yes, I am in pain.
Second appt, lasted less than 3 minutes. " how are you doing on one plaquenil ". No difference. "ok, then stay on that" After..of course the discussion of my pain meds. Didn't examine me or look at me.
Oh and yes, I was told I couldn't have Lyme living in California. Does a doctor realize how stupid that sounds? Does no one ever leave their state?
Off topic, but same: I am in charge of HR. Male employee in California gets a garnishment for his 5th child, third partner. The garnishment came from Virginia. He replies " They can't be my children, I have never been to Virginia". I tried to explain without sounding too astonished, that his partner obviously did move to Virginia after the consummating event.....
-------------------- 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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Brussels
Frequent Contributor (5K+ posts)
Member # 13480
posted
Dr. S. from Zurich, THE tick born disease specialist of Switzerland:
'Don't imagine things. You can't have babesia because you still have your gall-bladder. Only people without gall bladder can fall sick with babesiosis. Buy my book, I explain everything there.'
Posts: 6199 | From Brussels | Registered: Oct 2007
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posted
I have many, but will share two: Neurologist: After watching me walk and asking me about why I took IV Rocephin at such a large dose, and me explaining my llmd gave it to me for lyme... He says,"there is nothing wrong with you and I will not waste time or money testing you"..further he began asking me, "where are you now?", "who is the president?", and other ?'s you ask psychotic people. Needless to say, I had to control my anger for fear of him placing me in a padded room. I was still shaking from anger when I returned home an hour later. My 1st PCP: "IF you do have lyme, you may as well go ahead and apply for disability now"..this was before I ever was treated..I soon left her care. Although in retrospect she was right, just not what I needed to hear at the time.
-------------------- One day at a time Posts: 409 | From TX | Registered: Mar 2004
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surprise
Frequent Contributor (1K+ posts)
Member # 34987
posted
Infant daughter, with hospital visits for unexplained fevers, constant crying, late to sit up, never crawled, walked late:
Pediatric Dr.s: *shrug shoulders* wait and see, she's fine, and if you stop vaccinating you can't stay in my practice.
Now daughter 4 years old, raving OCD up at night, sensory issues, rages, anxiety.
Head child psychiatrist: 'she does not have autism, can look me in the eye and speak, does not have ADD as she didn't throw all the toys around; it's your parenting.'
Me: I am in my 40's, educated, have 2 other neuro typical children who don't have any of these issues. It's not my parenting! Something is going on!
Psychiatrist: Can give prescription for anti-depressant- otherwise, we can't help you.
(She is currently 7 and in treatment for Lyme and co., with me.)
-------------------- Lyme positive PCR blood, and positive Bartonella henselae Igenex, 2011. low positive Fry biofilm test, 2012. Update 7/16- After extensive treatments, doing okay! Posts: 2518 | From USA | Registered: Nov 2011
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Me: My memory is REALLY bad and it worries me. Doc: Hahaha You're too young to have memory problems. Me: I know. That's why I'm here. Doc: You're fine. Don't worry about it. --------------------- Flash forward to when I was 29 (last time I went to a doc). Not the same doc. Same town, though.
Doc: Chronic Lyme doesn't exist. I have a friend who knows all about it. Me: Well, there's SOMEthing wrong with me and I want to know what it is. Doc: It's probably just depression. Me: I haven't been depressed for FOUR YEARS straight. Doc: I can't do anything more.
-------------------- [insert motivational quote here] Posts: 27 | From CT | Registered: Feb 2009
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posted
That is exactly what infuriates me. Sent to specialist after specialist..only to be told the same thing..we can't help you.
I even had some that didn't dispute the lyme, didn't say they thought it was lyme, but didn't dispute..and still said, "nothing can be done".
I was told that I would just get worse and nothing can be done.. NOT good enough.
-------------------- One day at a time Posts: 409 | From TX | Registered: Mar 2004
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linky123
Frequent Contributor (1K+ posts)
Member # 19974
posted
"Vitamin D will take care of lyme. Just go outside and sit in the sun for a few minutes every day."
This man, a pediatrician and deacon at our church, was sitting in my living room when he said it. Too bad you can't throttle the deacon from your church while he is a guest in your home.
My son said he could see the hair go up on the back of my neck when he said it.
-------------------- '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
The night before ID appt. I read here on Lymenet that ID will say:
"We followed all the protocols, there's nothing we can do".
I'd already had two rounds doxy and was still sick. Later found I've had it for 10 years (that's when neuro problems tore my life apart).
Sitting in front of ID with numb face, leg pain, burning feet, dizzy, fatigue, confusion, comprehension problems..... I listened to her babble with claims "there's no evidence whatsoever continued use of abx helps Lyme" and "chronic Lyme is a fallacy" and then she stared me right in the eyes and said:
"WE FOLLOWED ALL THE PROTOCOLS. THERE'S NOTHING WE CAN DO".
Posts: 99 | From Cali | Registered: Dec 2011
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steve1906
Frequent Contributor (1K+ posts)
Member # 16206
posted
- I wanted to wake-up this post....I love reading these
Some years ago I went to a (ID, Doc). I showed him all my paper work, scans, blood work etc.
I even had my report from a local Lab here in Boston, that I tested Pos. for Lyme Disease.
Well this is what he said to me> You don't have Lyme disease, what. He didn't care that I tested Pos.
We all learn the hard way when it comes to (ID Docs).
Steve
-------------------- Everything I say is just my opinion! Posts: 3529 | From Massachusetts Boston Area | Registered: Jul 2008
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Haley
Frequent Contributor (1K+ posts)
Member # 22008
posted
I told one doctor that my primary doc said, "this medicine will kill ya". The new doc said, "yeah, it will, that's one less Lyme patient we'd have to deal with." hahahah. I thought it was funny. I think he was making a joke, but maybe he was serious
I just couldn't believe I flew out to see this new doctor and that was the first thing out of his mouth.
Posts: 2232 | From USA | Registered: Aug 2009
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Brussels
Frequent Contributor (5K+ posts)
Member # 13480
posted
THE lyme specialist Dr. Satz from Zurich in Switzerland told me, after I came back from the ER, unable to breath or to move:
"Come back in one year for a check up."
His name has to be here. He's a tragedy doctor and probably killed dozens of his patients for negative diagnosis of lyme, if not hundreds.
Posts: 6199 | From Brussels | Registered: Oct 2007
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Phoiph
Frequent Contributor (1K+ posts)
Member # 41238
posted
Response from PCP after my initial report of bizarre and alarming neurological symptoms, inability to digest food, and sudden, rapid weight loss (down to an emaciated 99 pounds):
"Wow...I wish my stomach was that flat."
Posts: 1885 | From Earth | Registered: Jul 2013
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posted
On bringing my bed ridden son to Children's Hospital when he stopped being able to lift his head:
"There are three children here I'm ACTUALLY worried about"
Posts: 372 | From british columbia | Registered: Feb 2012
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Judie
Frequent Contributor (1K+ posts)
Member # 38323
posted
Me: Can we do a Lyme test?
Immunologist: All the people who think they have Lyme don't have it and the ones that do, don't know it.
(he did not conduct the test).
Posts: 2839 | From California | Registered: Jul 2012
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Judie
Frequent Contributor (1K+ posts)
Member # 38323
posted
(While on the acupuncture table with a fresh bulls-eye rash)...
Me: Can you give me antibiotics?
Acupuncturist/PA: No, a bulls-eye rash isn't necessarily Lyme. Let's wait 8 months, if you're still sick we'll consider antibiotics...
(Later in the same appointment...)
Acupuncturist/PA: Now you must imagine healing angels or you won't heal (said in a very threatening voice while waving a box supposedly sending "healing rays" at me)
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