Topic: Lyme name change- now called "We don't DO THAT!"
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
I sit here shaking my head in disbelief.
I am DETERMINED to make a LLMD out of somebody.. but after over 100 calls several years ago that were made to find someone who cared about their patients... with NO luck...
It hasn't gotten any better in Florida.
Last year I had ONE appointment in 6 months. And I was actually ordered to leave it (eye doctors office) BEFORE I got help when the nurse accidently mentioned the word Lyme in front of the doctor.
I was actually tossed out on my butt by the DOCTOR because I had Lyme. NO other reason. I hadn't hardly even said anything.
It was just the nurses mention of the word Lyme that got me tossed.
Unbelievable.
Today I decided to start the search again. I got a name from a chiropractor's office for a medical doctor they said was the most open to new things. And still I'd have to travel a good way to get there but it was the best place they knew.
But I was determined to try.
I can't believe that everything was going well on the phone, they had my information and the appointment was set.... until they asked why I was coming in.
I STUPIDLY mentioned it was because of Lyme disease.
WHAT?
Lyme disease.
Immediately they said...
"Do you take pain medications for that?"
Rather shocked by the question, I said, well no.... just over the counter stuff. That's the only kind of pain medicine I need right now for my Lyme.
They said .. and I can't believe they said this..
"Well you can't come here because- we don't DO THAT!"
I said, excuse me? What did you say. I heard her because she was so loud and nasty.. but at that point I had nothing to lose...
She repeated herself... and about blew the phone out of my hand... and replied...
"I said, WE DON'T DO THAT!!!"
I let the dust settle for a moment.. and then said...
Do you know anyone who does?
"NO! You need to call the hospital for THAT!"
I quietly said thank you and hung up.
Now I am NOT upset or even desperate.... not at all.
I am stunned by the total freak out people around here are having at just the mention of the word.
What's going on?
You'd think there can't be that many idiots in one place!
But there is.
Anyone want to make bets how many calls I have to make before I find someone?
Keep in mind I weeded out a bunch of "We don't DO THAT's" several years ago.
posted
Maybe the correct answer was that you take pain medication and then you would magically be let into the secret Lyme treating society.
Posts: 526 | From NJ | Registered: May 2007
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Yes, I am sorry to say, there are that many ignorant people here in Florida. I can tell you that I have been here for 10 years, and I did not know what was wrong with me.
I had to go to Atlanta to get my diagnosis of Lyme/Ehrilichia because I didn't even know what Lyme was, nor that their was a possiblity that I might have it!!
I have since seen several of my doctors and told them what was wrong with me and non of them believe it and refuse to give me any medicine. Even my dermatologist. The Infectious Disease guy (Ft. Walton) told me that he has seen several patients that "claim" they have lyme but he was never able to reproduce the results.
I previously had an Igenex test and tested CDC positive for Lyme IGM and Igenex positive for Lyme IGG. So, I wasn't really worried about this test. BUT, it came back negetive!! Lyme Titer they said.
Ok, so I go to the lab, I ask them what their criteria is because it is funny that I have tested CDC positive for Lyme IGG and IGM on the WB, but not on their test. On their test I was negetive for IGM and IGG. Well, of course I had to speak to 3 people because I wanted to know if any bands showed up because that could help me track the progression of my disease or the progress of my treatment. They were dumbfounded!!! They didn't even know what I was talking about, bands???
I gave them my home and cell numbers so the head of the lab could call me back. Well, they called me back and want to me to go back so they can take some more of my blood. Which would not be such a big deal, but they are 2 hours away. My husband is so mad that he doesn't even want me to go. He said no wonder the doctor couldn't get any of the results reproduced because the lab doesn't know SH!! about Lyme!!
So, I am in the panhandle, don't even bother to call any doctors here!!!
Regards, Shalome
Posts: 893 | From Florida | Registered: Dec 2008
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
r said.. "Maybe the correct answer was that you take pain medication and then you would magically be let into the secret Lyme treating society."
I think you've got it!
My thought is they are treating a misdiagnosed disease (fibromyalgia- NEVER have seen so much fibromyalgia anywhere) and using pain meds.
Then I got thinking about WHY Florida is SO much worse than everywhere else.. and I've worked with folks from ALL states...
BINGO!
HOLD THE MAYO Clinic!!!
Will have to look into what is going on. This is insane.
Hey lies..
Yes on the scarlet letter deal.
Maybe our Lyme green shirts should have a big red bulls-eye and also the letter L printed on them in red.
GEEZE!
And Hey Need...
You are totally correct in that post. It is a shame what you had to go through. How awful!
Do note- I did learn the ID idiots here consult with ID idiots up north. One Florida IDiot here actually was STUPID enough to write the ducks name on the records of a patient after he had a phone consult with him.
Guess who said in the consult to "ignore the tests"- "they don't have Lyme even though the tests are positive"... and "don't treat them."
It was none other than...
Dum, dum, Dattwyler.
These IDiots are trying to nail our LLMD's for treating.. and made a HUGE deal out of Dr. Jones prescribing (a refill) before seeing sick kids from out west.... and look at what they are doing.
Without seeing the patient or knowing anything.. they ORDER the ducks here to not treat... even with CDC positive tests, a history, a rash and symptoms!
THE IGNORANCE IS ABSOLUTELY AMAZING!!!!! Sadly I am not shocked at all! I live in South Georgia, 40 minutes from Tallahassee.
I was finally dx by a very sweet Dr. that actually listened as he bacame ill while working as a Surgeon. Nobody could dx. him, his collegues kept telling him it was stress!!!! So he truely understands how we/anyone feels.
I was the first person he had ever seen w/Lyme, let alone dx. NOW, his words-----half of my supply room is stocked with IgeneX kits!!!!!!! He has since dx many!!!!! But---I can't get him to test hiself as I believe that is what he has!!!!!!
I am so sorry, I know how you feel and it is the most fusterating, unbelievable thing I think at some point we all run into!!!
Shalome----Please send me a PM as I think that there is a NP that is very versed in Lyme and has a good rep. for treatment!!!! I am shocked that you where dx. in Atlanta!!!!!! I was sent to the 'head' Nuero. there and I had my + results for Lyme and Babesia-----He actually laughed, threw----yes, threw my results at me and said "there is no such thing as Lyme here!!!!" Unreal!!!!!
Tincup, did I understand right?? Are you in Fl.????? If so, please PM me!!??
Also, God bless you for not going off on that receptionist, or the other Dr.'s!!!! I have promised myself that the next time I run into that and I know I will ever with all of the + testing----I AM GOING TO LOOK THEM IN THE EYE AND TELL THEM; PLEASE DO SOME RESEARCH AND LEARN ABOUT THE EPIDEMIC CALLED LYME DISEASE!!!! WHEN YOU DO----LET ME KNOW AND I'LL BE HAPPY TO SEE YOU!!!!!!
I know---sarcastic and no patience there!!! It is just plain wrong and I will not tell another Dr., Nurse, Office "O.K." and walk away again!!! Just me----But they need to realize that they are the ones that need FURTHER EDUCATION as someday it may affect one of their family members.
Of course I pray that never happens, but so many LLMD's start their practice because someone close to them has late stage Lyme!
Also TC--if you need an Eye Dr. and are in Fl., there is a wonderful one in Tallahassee that is actually from New England and STUDIED LYME WHEN IT WAS 'NEW' TO THEM THERE!!!!!
He was actually happy, in a bitter-sweat way, to see me!!!! He had so many questions as when he left New Eng., they had not run into anyone with Neuro-late stage Lyme.
Do you believe it!!!!!!!!!!!!!!!!!!!!!!!!!
Y'all please send a PM if your in Fl., okay.
Posts: 351 | From Georgia | Registered: Feb 2008
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
Holy Cow!
Tell them you would like a letter from their office
To forward to the State Medical Board and your insurance
For future reference. I hate to say it (but I will)
Is that my response to "We don't do that" would have been
"Well I don't do ignorance or stupidity. Thanks for saving me the trip and time".
One day.....our time is coming. Hang in there Grandma.
BTW, how is the precious new one?
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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adamm
Unregistered
posted
We don't do Lyme= "We're acting under duress--if we deal with you and also have to deal with the medical board."
posted
Why not ask them why they don't do that? And then keep engaging in conversation asking why to see how far you can chat with them about what's going on? I know, it's a chore...
I did that once and actually got somewhere after a long conversational while...
Posts: 13116 | From San Francisco | Registered: May 2006
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posted
When my I told my GP I had Lyme, she agreed it was possible considering all the symptoms that I had complained about over the years.
I asked her if she would be willing to work in collaboration with my US LLMD (for the prescritions, the monthly blood tests, etc.). She wanted nothing to do with Lyme and asked me to find another GP in Canada.
I felt as if I had told her I had the Plague or Ebola.
I imagine that people who were diagnosed with AIDS in the early 80s received similar treatment, if not worse.
Docs make me sick!
Posts: 209 | From Montreal, QC, CAN | Registered: Jan 2008
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feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
I must be lucky. I am 6 months Fl. 6 months MI. My LLMD is in MI. and my MI PCP is very open to helping in my treatment.
She gave my bicillin shots. coordinated my PICC insertion and 1st dose Rocephin.
In Fl. while I do not have a LLMD, the PCP that I have has been cooperative. There is also an underground PCP who treats lyme and has for quite awhile but remains under the radar. He selects who he treats on a trust basis....I am hoping to hook up with him with an introduction from a alternative doctor.
So I really gues that I have been lucky as far as these things go.
Feelfit
Posts: 3975 | From usa | Registered: Aug 2007
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posted
Same here.....I have been told just today in fact, that a very prominent hospital here "does not treat Lyme". I was told the EXACT same thing by another prominent hospital here.
By the way, can I say the hospital. I really don't feel like looking up the rules. That sounds lazy I know, but oh well!
I am getting so fed up with this that I am coming real close to bit** slapping the next doc who acts like I am a crazy or a hypochondriac. (sorry for the lang).
ypo's think they have evrything. I don't. I didn't think I had MS when they tried to tel me I had it over 10 years ago, or Lupus or FMS.
Well, I might have FMS, but if I do, I believe it came from Lyme.
I took positive western blt tests to several docs here in NC, and I was laughed at too.
If ya'll know of anyone here, I would love to know.
For those of you who do have the $ to travel, and good Ins, I would suggest going to the doc (in NYC I think) who was on Mystry Diagnosis and treated a young girl for Lyme.
I still have the episode on tivo I think. If anyone needs me to look it up I would be happy too!!!!
And someone please tell me if I can name the hospitals or not. I would do it anyway cause I don't want anyone to go through it but I don't want to get kicked out of here. It's the only place u can go to talk about Lyme and not feel crazy!
You can all probaley figure it out anyway if you are near NC, but still.
Thanks ya'll!
Posts: 117 | From Winston Salem NC | Registered: Sep 2008
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posted
It's not that much better here in CT, the epicenter of the Lyme epidemic. My PCP was finally persuaded I had chronic Lyme, but was too nervous about treating it, suggested Yale-New Haven.
I finally hooked up with Dr. S who trained under Dr. Jones. I believe there are only 3 LLMD's here in CT, which is GROUND ZERO of the epidemic. This is INSANITY.
-------------------- Sick since at least age 6, now 67. Decades of misdiagnosis. Numerous arthritic, neuro, psych, vision, cardiac symptoms. Been treating for 7 years, incl 8 mos on IV. Bart was missed so now treating that. Posts: 765 | From nw ct | Registered: Sep 2008
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sparkle7
Frequent Contributor (5K+ posts)
Member # 10397
posted
I guess we just have to take our business elsewhere... The medical industry is being hit by the recession just like everyone else.
Can you find some good alternative practitioners?
I've been misdiagnosed & ridiculed for a long time now. I don't trust most of the "mainstream" doctors, anyway.
Sorry it's been difficult for you folks. I'm pretty disgusted with the whole medical situation regarding Lyme, etc. I don't even know if the so-called LLMDs even know what they are doing.
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
I agree Sparkle. There's some serious issues even with LLMDs and their total lack of consistency treating. I'm totally fed up with the lunacy now. I'm seriously considering just stopping treatment based on my experiences after nearly six months. I'm not seeing any significant improvement that makes me think it's warranted to continue slamming myself with Zithromax endlessly. The ends need to justify the means.
Overall, it's a sad state of affairs. As has been said many times, I guarantee you the pressure is coming from high, high above these docs, societies, etc. This ignorance surely isn'ty accidental. It's impossible. Thinking otherwise is not sensible.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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bettyg
Unregistered
posted
tc; WOW; if this happened to you, who doesn't take crap from anyone; guess how others would have handled this! uffda big time.
so disgusting, being treated like a leper;
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posted
Just had another idea, but it's totally up to any of us if we feel like spending our time this way.
Simply go in person to these medical offices, without a prior phone call, and ask about care when you walk in.
When they say no, tell them you'd like to leave them some literature about Lyme/co's and give them some brochure packets, and be willing to chat about it informationally.
I am now ready for most medical visits with my info packet in hand. One for the doc, one for the staff.
And I talk with the staff about it being here, that anyone could catch it, that their pet could bring it inside the house, that they need to take precautions, etc.
And you know what? Sometimes I think the message is getting through.
Posts: 13116 | From San Francisco | Registered: May 2006
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lymielauren28
Frequent Contributor (1K+ posts)
Member # 13742
posted
Tincup, I bet if you'd said "yes I take pain meds" and THEN told them you were on anti-depressants as well not only would you have been let into the secret Lyme society but you might've gotten a cookie too!
See! There's your ticket girlfriend!
But seriously, I feel your pain. It's just as bad here in Mississippi. Feels hopeless and pointless sometimes but you know better than anybody that you just gotta keep on keepin on!
Good luck in your search.
Lauren
-------------------- "The only way out is through" Posts: 1434 | From mississippi | Registered: Nov 2007
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I was diagnosed in Atlanta by the Fibromyalgia and Fatigue Center. Someone asked about them in another discussion and I was floored about the negetive responses given from the people on this board about the FFC. I love my FFC doctor.
She is very expensive, they don't take insurance, but she was the one who finally tested me for Lyme. That is something I will never forget, and I will always appreciate her for that!!
Oh, when the Infectious Disease doctor's receptionist called me for an apt, I specifically asked, "Does he treat late stage Lyme?". She said, "He is an infectious disease doctor, he treats all infectious things." OMG!!
This infectious disease doctor also ranted for about 30 minutes of my appointment telling me that Lyme doctors are quacks, a waste of money, and trying to get rich off of sick people. I was inches from saying to him, "And what the difference in your line of work and what you do for people?" I guess he just gives pain medicine or antidepressants until we get upset enough to go somewhere else.
He billed my insurance $440.00 for the first visit!! They paid him $250, and I had to pay a $25.00 copay. The ignorant jerk got $275 to tell me I did not have lyme, and please for me to never try to go to a Lyme Doctor.
I could not wait to get out of there!!!
Shalome
Posts: 893 | From Florida | Registered: Dec 2008
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posted
When my chiropractor advised me to go get blood work tests for Lyme,
I went to LabCorp and they drew lots of blood.
I had no clue why I was there and what Lyme was...
Well unfortunately about one week later, they came back positive for Lyme.
Labcorp faxed the results to my Chiropractor.
She (who has Lyme herself) advised me to go see an LLMD.
Since I did not know what to do I turned to my elder family members...
My family members advised me to contact a Poison Control Center.
A Poison Control Center ???... hmmm but was I poisoned ???
So I went on line to do some research, and found Lymenet, and understood what Lyme really was, and what an LLMD is, then compared my symptomps...
Now I know I have Lyme disease.
The family and friends are still clueless what Im going through.
I guess most of these doctors are all the same, Idiots with Old School Training and a lack of belief or care for what is actually causing the symptomps that we have.
We go in for a headache, and get pills for a headache, But then dont they really want to know what is actually causing that headache or those joint pains or that Chronic Fatigue, etc... ???
I guess the next patient who is sitting in the office waiting for his meds is more important than digging into each individual case, they get paid per the visit and Not per their actual care.
And I am still surprised that today in 2009 the modern day medical community can behave in such ways.
Very Sad.
Thank You All For Being Here.
Best regards, Eric
[ 01-28-2009, 02:46 PM: Message edited by: eric555 ]
Posts: 570 | From philadelphia, pa | Registered: Dec 2008
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posted
Boy, I am still just-----well at this point agnry!!!!! How in the world can a Dr. tell you, especially with a + result to show them that you don't have Lyme????????? UNFREAKING REAL!!!! I can say that, can't I???? It does kind of sound bad!!!! Sorry.
Y'all know I'm sure, but the old saying among Dr.'s was "TO KNOW SYPHLIS IS TO KNOW MEDICINE!!" Now, we all know that the sprocete is almost the same as in Syphalis. It's even been referred to as the cousin of it as Lyme is the only other Dis. to show this spircete!!!
SOOOOOOOO---I just wonder how any M.D. would feel if we actually quoted that!!! Can you imanging saying, in responce to what they have said, "Sir (not Dr.!!) it was said some years ago, To know syphalis is to know medicine. Well I'm afraid that you will have to come into the Mellinium as, "TO KNOW LYME IS TO KNOW MEDICINE." When you are ready, please feel free to contact me and I will guide you through the learning process, HOWEVER payment is due at the time of service!!!!!!!! Give them your # and walk away!!!
Although I went through all of this, and still do like y'all said, with positve results; it still just blows me away!!!!!
AaaarrrrhhgggG!!!!!!!!!!!!!!!!
Posts: 351 | From Georgia | Registered: Feb 2008
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posted
It is admirable that patients are trying to educate doctors, but it might be less a problem of education than of being afraid of getting involved in the controversy. Education won't fix that. As long as doctors are being punished for treating lyme correctly, there will not be very many lyme treating doctors.
That is the whole point of what is going on. It is an intentional program to stop doctors from treating lyme. This has been said repeatedly, in such places as a book by a former Yale doctor who worked with Steere.
I was screamed out of two doctors offices because I wanted to be tested/treated for lyme. It was so shocking to see this behavior that I said nothing, just left. But anyone who goes to a doctor not known to treat lyme should be prepared for this reaction and have their flash card ready with an appropriate response. Otherwise, these docs will not get told off. But, really, why should they stick their necks out and take a chance on losing their licenses.
The real problem is up the line.
Posts: 8430 | From Not available | Registered: Oct 2000
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posted
The real problem I still say is totally on the Government,
and their coverups of this being so severe and a Genuine Epidemic,
with millions infected and millions more who get treated for other symptomps while they actually have Lyme Disease.
So when the Officials that we elect step up to the table and admit how bad this thing really is, it may create a World Wide Panic.
Trust me, the Governments know about all this and the severity of it, they have the Bio-Terror labs very well hidden from us all, where they practice, test, grow all various infectious diseases, and Lyme being one of them, and they do wear those Space like suits just like in the movies and go through a very thorough cleaup before they go home...
Posts: 570 | From philadelphia, pa | Registered: Dec 2008
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posted
One of the more interesting reads is when you google for "military bases Lyme disease".
Near the top you will see an entry about tick risk assessment of military bases. They assessed all bases between 1983 and 1996 for tick prevalence.
Then if you check some more entries there, especially Pat Smith's talks, you will read what the army has been doing about ticks for a while. They take the issue very seriously.
Posts: 13116 | From San Francisco | Registered: May 2006
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disturbedme
Frequent Contributor (1K+ posts)
Member # 12346
posted
Lou makes a very good point, and I agree.
-------------------- One can never consent to creep when one feels an impulse to soar. ~ Helen Keller
My Lyme Story Posts: 2965 | From Land of Confusion (bitten in KS, moved to PA, now living in MD) | Registered: Jun 2007
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posted
I agree with Lou, and still I will continue to educate every medical staffperson I come in contact with, to tell them to protect themselves and their pets, since the ticks are unaware of the politics of this disease and continue to infect whoever crosses their path.
Posts: 13116 | From San Francisco | Registered: May 2006
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posted
It seems to me that is is taking the medical field/governement a lot longer to accept Lyme than it did to get them to admit that there was HIV. I might be wrong, but Lyme has been around for a really long time.
What did the AIDS folks finally do to get recognition? And, I have looked at a lot of the Activisim posts, but I just can't read through them all. I don't know what is most effective for me to spend my time on?
Trying to educate doctors who don't care
Trying to educate those I think have lyme, but trust their doctor like they do God
Trying to prove to people who aren't sick that I have lyme
I am just so tired and I don't feel like after I have pushed through this disease for 20 years I should have to explain it to anyone. I should be accepted just as easily as if I walked in and said I have cancer....
I have written to Oprah, voted to Obama, contacted my congressman - via mail and tried to phone him, talked to doctors who really think I am crazy.....
I mean, literally, I told my husband, IF I DIE, you better tell them that I died from LYME. Nothing else, I DIED FROM LYME. How pitiful is that? How pitiful is it that I can tell my Infectious Doctor what WB Band 41 means when he doesn't even know that it is measured in bands?????
Sorry for the rant.......Shalome
Posts: 893 | From Florida | Registered: Dec 2008
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