posted
I only "rediscovered" my Chronic LB last week by finally doing a search on "Chronic Lyme," then going to the ILADS page.
I'd NO idea about the political controversy and the baloney M.D.'s face due to misinformation, etc.
So, am I to understand I should only use the "L word" behind closed door with my physician or naturopath? Please help me understand Lyme etiquette 2010. I'm still in shock, and just reading up a storm about LB and the nasty spirochete. Thanks.
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Keebler
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- Lyme etiquette 2010? When it's OK to even whisper "Lyme"
You probably don't want to use the term " 'L' word" to a doctor as that can mean lesbian (there was a cable TV & a stage show with that title, too).
So, to keep things clear, when is it safe to speak of lyme?
Well, not with just any physician. Your LLMD (Lyme Literate MD), of course is safe. However, most GP's will kick one out of the office and most specialists will shoot one out in a body cannon.
Once a patient mentions "lyme" to a non-educated doctor, one's chart and one's care usually goes down hill from there and they are labeled a "difficult patient" - a code for crazy, lazy, whining, demanding . . . and one to ignore. "Difficult Patient" is up front on your chart forever. It's the first thing a new doctor will see and it will bring the last of being treated with respect.
If you think you might have lyme or other tick-borne disease, get to an ILADS-educated LLMD for a good assessment and tests from labs that know what they are doing. Not all do. But, an experienced doctor would need to SEE you, take history, do a physical, etc.
If you EVER had a bulls eye rash from a tick bite, that is important for LLMD to know. Not all lyme patients have a rash and the rash can appear in many ways - but if you ever had that, it is key to diagnosis, especially if you are experiencing symptoms.
As for your naturopathic doctor, most NDs are not at all lyme literate, either. However, I've never known one who did not want to learn more. Some NDs are LL and even are ILADS-educated and ILADS members. Even if your current ND is "lyme friendly" it can take a very long time to learn about lyme.
If you think you might have lyme, see an ILADS-educated LLMD for assessment or an ILADS-educated LL ND. But be sure they are up to speed and thoroughly educated. Often one will have both a LLMD (as they often have much more experience) and a LL ND for the support measures. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
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- * This explains WHY you need an ILADS LLMD or ILADS LL ND (naturopathic doctor) to guide your treatment protocol.
In addition to the usual coinfections from ticks (such as babesia, bartonella, ehrlichia, RMSF, etc.), there are some other chronic stealth infections that an excellent LLMD should know about:
I would encourage EVERY person who has received a lyme diagnosis to get the following tests.
- at link.
=====================
Baker's Dozen also explains a lot. Others will also be along with links to videos or articles that explain the hostile territory. There is one from a Boston TV station.
Here is hope, though, that you find an enlightened GP, a good LLMD and -- that it turns out that you are assessed with something far more simple and easy to address. Best of luck in your discovery process. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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randibear
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oh man, sore subject. i told one doctor in the er that i had lyme.
he politely put down his pad and told me to never, ever mention that word to anyone in the hospital. he was very nice and said they would put me in the psch ward and laughed, but told me don't go there, nobody here believes in it and you'll just get in trouble.
so i only mention it to my llmd. i don't even tell my gp (who i tried to talk to and gave up and now he treats me like a nut case) or my cardiolgist (ok, maybe i should, but i ain't gonna), or my gastro (oh yeah, he'd really believe me. he told me one time a doctor was prosecuted for treating lyme and bragged about what a "quack" he was. uh huh,,,) or my ob/gyn.
nope, i just keep my big mouth shut.
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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Keebler
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- Before the E.R. doctors even came into the room, I heard one say to the other "you're not even going to TREAT her?" The head intern said "NO" We don't treat lyme.
But I was not there for lyme. I was there for unrelenting seizures and shaking. They actually threw me out of the E.R. for "trying to throw myself off the table" after yet another startle seizure when the speaker on the ceiling directly over my head blasted and shoot me off like a cannon.
Apparently, my chart had "difficult patient" as the main label and then "thinks she has "lyme" - which is basically a code to not treat anything at all.
They had not even come into the room to assess my current situation and they had determined I would get no treatment. They had not counted on me having hyperacusis and able to hear them talking outside the room.
And that is just one of many, many horrible experiences. I would rather die, no my own, peacefully, than ever be exposed to either the noise of the E.R. or the ignorance, embarrassment and bad medical care.
I've also been in so many specialists' offices with nearly the same experiences. And I'm about the most polite and emotionally centered person there is. But, I'll never see another doctor who is not lyme literate. (And in my state, that means, no doctor). If they don't have the background, they can't even begin to understand the terrain. But it is their attitude that is the most disgusting of all - and that gets recorded and goes on to cause trouble in my chart - in my care - forever.
=========
Another E.R. - before I knew about lyme, my inner ear doctor suggested it and I was in the patient education center of a hospital on the computer when something flashed and sent me flying. I was taken to the E.R. where the doctor said,
"It's says here in your file that you think you have CFS?" I whispered, yeah. He said: "well, doesn't it bother you that you SEEM to have something that no doctors can find, can't prove and you just SEEM to get worse?"
I said, "yeah." He said: "Well, young lady, I'd really think about that if I were you" and mumbled something like "CFS, hah, what a joke."
Never mind that even while in the E.R. I had a couple more seizures, I was dismissed as told I just needed to "cheer up."
And these are just two of dozens of experiences like this. Had my file not had "difficult patient" on that inside front page, I wonder if I might have received better treatment.
But, asking for better treatment is what got me the label of "difficult patient" in the first place. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
I only talk L with my llmd. If I go to other docs I never tell them. Quick way to get dismissed. The only problem is when they see anomolies that you know are a result of L and they want to do invasive things.
So I just go and see what they say and make my own decision (after going home and asking my llmd what he thinks)
Sounds like most everyone has had the same dismissive experience.
-------------------- Treelady Posts: 39 | From California | Registered: Dec 2009
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posted
I have a young PCP, but not my main one, who believes in it, but she follows the standard guidelines since she works in mainstream medicine and at a clinic. She at least is very accommodating to my discussions.
My cardiologist doesn't debunk the theory, but he's arrogant enough that if Lyme is causing me symptoms, it's nothing heart-related because all of his testing proves I'm okay. Nice guy, but most cardiologists seem to have some arrogance about them. He did mention a LLMD that he thought was still in practice.
Those are two I got lucky with not being pegged as a "difficult patient". As suggested, best not to mention it at all. If I see my main PCP and he asks why am I taking that, I just tell him another MD wants to treat me for a bacterial infection.
Posts: 194 | From Colorado | Registered: Nov 2008
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posted
well, I'm seeing an ID doctor and she's great, she knows all about LYME and the BS surrounding it, she ordered all new
bloodwork and I was all sorts of positive she said, she immediately put me on the IV. I think it has a lot to
do with where you live. I live in an area that has 1000's of sick LYMIES, so the docs HAVE to treat us....REVOLT PEOPLE !!
Posts: 208 | From Hudson Valley, New York | Registered: Mar 2008
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Keebler
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- Ott - Perfect: " . . . just tell him another MD wants to treat me for a bacterial infection." That works. A slight shrug of the shoulders with " . . . Something I can't spell" also works. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
My LLMD tells me to tell everyone in the ER, because she is a well respected MD in the hospital, and because they have access to my dx anyway.
I've had excellent respect, and some curiousity, as well from ER docs. The younger docs are getting better training, too.
Keep in mind, though, I go to a rough hospital -- trauma center, gun shots, etc. Fighting about Lyme isn't a good way for them to spend their time.
I know I'm lucky.
Posts: 564 | From Tick Hell | Registered: Oct 2008
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GiGi
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We were recently told by visiting physical therapists from Medicare that if the cause of the problems is Lyme, they are now extending the therapy period to 8 weeks instead of 4 when it is "just Parkinsonism"! But of course therapy ends after 8 weeks when no improvement can be seen.
I almost fainted when I heard this. I call it Lyme and everything else that is part of it. It took about ten years for them to hear my mantra - so don't be shy, eventually they get the message. The PCP's wife herself now has Raynaud's, so it won't be long before they will become more "curious"and start asking questions how did I get rid of it. That was one of my first very minor symptom too.
I call it by its name - Lyme Disease, and am getting a lot fewer stares already - "ya, heard about it, that's bad !"
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littlebit27
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I had to go to a new primary care doc because my old one's was horrible and his office staff was horrendous. But anyway I told him the DX of Lyme, not by choice but because my LLMD wrote on the sheet for the blood work order Lyme under other diagnosis. And I had to ask if his office would pull the blood for the Igenex tests. He said they would pull it for me.
But then said "I won't argue with success, but there are some doctors out there who are just trying to get rich off of patients." I told him I understood the controversy and everything else. But see, the funny thing is, he didn't offer any other kind of suggestion as to what I MIGHT be suffering from.
Just said there are no confirmed cases of Lyme in GA, I said I'm not from GA, I'm from MD, I just live here now. Oh well that didn't matter either. At least I can be grateful they will pull the blood for the igenex tests.
And I've had horrible ER experiences that had nothing to do with Lyme. I avoid the ER at all costs, and when I do have to go, sometimes I drive 40 miles to go to a good one instead of the crappy one in my city.
posted
keebler, your experiences make me feel better!
when i went to the ER they sent me home with a list of suicide hotlines, and told me if i decided to kill myself before i could get an appointment with a psychologist to come back in... i wasn't suicidal at all... i was there because i felt like i was dying and wanted to live!
i swear, for every good doctor there's 100 bad ones!
Posts: 220 | From Kansas | Registered: Mar 2010
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quote:Originally posted by kellephant: keebler, your experiences make me feel better!
when i went to the ER they sent me home with a list of suicide hotlines, and told me if i decided to kill myself before i could get an appointment with a psychologist to come back in... i wasn't suicidal at all... i was there because i felt like i was dying and wanted to live!
i swear, for every good doctor there's 100 bad ones!
posted
Sorry, I don't know how to use the quote thing.
Some of your responses added to my fears and others had me LOL! I guess I should approach this new adventure in medicine with a chuckle and look to collect more ideas for dramady films.
I'm afraid I already freaked my current specialist 'cause I talked up LD to 2 of her staffers when I went to drop off x-rays. Oh, man... Can't change what I already said. Will keep my mouth closed from now on (I hope!).
Of the five surgeons I worked with last yr, it seems only one was open to Fibromyalgia being "real." He and two others gave me steroids.
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Keebler, et al. I definitely have LB. Had the EM rash verified by three excited GP's together in 1989, but only got one wk of abx.
History of air hunger, early colitis/ileitis dx, long story of more attached ticks, more LD, endometriosis, Fibro dx, bout with unknown tropical intestinal parasite, more ticks, major chigger attack, arthritis, swollen painful joints, another attached tick Sept 2009 but still no abx (my PCP removed that tick but wouldn't give me any abx).
From recent reading, I think I have Babeosis, too. I've long thought I've got untreated parasites (in addition to the noisy yeast screamin for chocolate).
I made copies of Dr. B's 37-pg treatment monograph to give my doctors when I see them.
Thanks to all for posting. I take it that I should only whisper about my LD, but get public education going whenever/wherever I can.
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im pretty sure if you have those you shouldnt be taking steriods :/
Posts: 220 | From Kansas | Registered: Mar 2010
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Dear kellephant, NO KIDDING! omg
I was appalled to read (and re-read, and re-read, and photocopy) Dr B's 37-pg monograph. NO ONE told me!
Yes, I had the EM rash and a positive LB dx nearly 21 yrs ago. And yes, I asked my PCP for more antibiotics when I had attached ticks in 1997 and 2009, but he refused. Wouldn't give me preventative abx to have on hand despite knowing my vocation and avocations both scream TICK, TICK, TICK.
I got lost in the Fibromyalgia myth. OK, now I'm crying. My chronic LD is NOT my fault.
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Keebler
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- You said: " . . .I made copies of Dr. B's 37-pg treatment monograph to give my doctors when I see them. . . ."
I did the same thing. It turned out to work against me. With positive results for 3 tick-borne infections from Igenex in hand, I had Dr. B's set for my PCP. She would not hold onto it, but defleted it to the trash can, saying "there is no lyme in this state." She said I had mental issues and that the seizures were just my imagination.
This happened with different doctors for years. None ever read what I took for them but only placed it in my file. One doctor said, "You know, no doctor is going to take any of these articles seriously." He was right. They were so very wrong to dismiss the material. But it's how it is. Move on.
I would put your efforts into finding a doctor who is LL and getting on with learning what you need to know to proceed with your treatment -- and just leave the other MDs in the dust where they want to be. When you get better, then is the time to share. If you get labeled in your medical chart as a bad patient, that will follow you for life.
Anyone who even whispers LD to most doctors, will be labeled "difficult patient" - forget any kind of medical care for anything from anyone after that.
It's best to just not go back to doctors who are ignorant. Why pay them for bad work? Why risk your medical file? Why risk their making trouble for your LLMD?
Seriously, once you are labeled as incompetent, in an emergency, you will not get care.
If you want to work in advocacy, activism, go to the forum here - &/or to the LDA site. Work with the groups that already are working on education. They've been through the trenches and can show you the way. -
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springshowers
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posted
I understand the reasons you are listing as to why your afraid or do not feel you should say you have Lyme.
But we have to ban together and YELL It outloud. How else are we to raise awareness if we all quiver in the corner afraid to "SAY" it even.
I know it might mean stress or being treated differently.
I recently this year had sepsis from my port and I had to explain to a team of doctors and specialists and nurses and doctors coming in and out what is going on.
I told THEM ALL The same thing all about my LYME and CO infections and All about Fry Labs and that BUG and even though I got the looks..
And I was told some odd things such as how they do not treat it etc.... or that it is not believed to be chronic etc.
I kept repeating the same story and how I knew of the controversy and how real it was. I got lucky and ONE of the lady doctors has a husband with CFS And FMS and said he was treated badly. I mentioned to her that she should have him tested because lyme comes up a lot when you are told you have those.. She was very supportive and agreed.
THe ID doctor and others were very stand offish.
But when I got my reports back from the hospital stay.. All weeks. I read them stating what I said and in my diagnosis they listed it.
The only reason I got nervous about that was for insurance reasons because until then I had doctors who used various codes that were not exactly lyme. Such as Vector borne illness and FMS and CFS and Pain Syndrome etc.
SO.. WEll Back to my point.
I THINK WE HAVE to Speak out when we to go these ERS .. The more voices we have the more they will start listening. THat is what I think.!!
Please do not be afraid. I know its tough.
I got a comment from one nurse that she is hearing that word in the ER more and more often. That is what will make them support us. WE can not retreat.
Please think about it everyone!
You do not have to go into all the details of your treatment and have to worry about your doctors getting into trouble etc. I tried to keep that stated in overall terms. I know this is a touchy subject.
But I was so glad that I disclosed it and talked about it and brought it forward. I had been in other ER and doctor office situations where it did not go so well. But still..
WE have to bring out the awareness and there are foundations and such trying to help "US" do that. WE ourselves have a responsibiilty I feel to do our part in that venture and tell everyone!! and Speak about it openly and outwardly and with strength.
I hope you will think about this point of view for the better of all of us and those young people coming up who have to battle this battle ground onward. I feel somewhat responsible to do the RIGHT Thing for the community forward!!
BLESSINGS EVERYONE
Posts: 2747 | From Unites States Of America | Registered: Apr 2009
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Keebler
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- Working through an organized group will not put our personal medical care at risk for being labeled "difficult patient"
I saw what happens. With that in the inside jacket of my file, before the ER doctors even entered the room, they had decided not to treat me - regardless of what was happening.
Advocacy works in many ways without putting one's future care on the line. Yes, we have to work - but smarter, not just louder. Working with an advocacy group offers us privacy and the experience of many who have gone before in such matters. -
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Haley
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I never really thought about this until recently. I went to the ER 2 times - 2 different ER rooms.
I checked in with the nurse and she asked "do you have any illnesses we should know about." I immediately said Lyme. When I saw it written on the screen in big bold letters I thought "maybe I should not have said that." I even thought if I am admitted again maybe I should say "take that off" I really don't have a CDC positive test.
I'm glad that spring showers expressed that opinion. I feel a little bit better about telling both hospitals that I have Lyme.
Posts: 2232 | From USA | Registered: Aug 2009
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Keebler
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- Haley,
You live in a state where doctors who treat lyme are protected by law so your ER care likely was not adversely affected.
Some states will take away the medical license of a doctor who treats lyme. I live in one of those states. To be open here can be dangerous. No doctor in my state wants to be connected with having a patient that says they have lyme as that doctor can then be turned in to the medical board and their license challenged.
Much depends on where one lives and how military the state medical board is as to how safe it is to be open about lyme. -
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springshowers
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I still think we need to be brave and step forward or things will not change and there will not be an accurate account or accounting of how many suffering people there are.
I know my own doctor got nervous when i was admitted two times in 6 months under his care.
Somehow the doctors and the patients have to stand up together.
I do not see how living in fear or being secretive is going to change anything when you look at the big picture.
I understand when you look at individual cases and such and I am in no way minimizing the affects and treatment we get when we do disclose.
But for me.. it is of my opinion that we need to change to expect change.
Posts: 2747 | From Unites States Of America | Registered: Apr 2009
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lymetwister
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posted
I think you are safe to use these "L" words :-)
Large_Cell_Carcinoma M Lung Adenocarcinoma of Lung (Low Power) Large_Cell_Carcinoma M Lung Large Cell Carcinoma of Lung (Low Power) Large_Cell_Carcinoma M Lung Large Cell Carcinoma of Lung (Med Power) Leiomyoma M Uterus Leiomyoma (Low Power) Leiomyoma M Uterus Leiomyoma (Medium Power) Leiomyoma M Uterus Leiomyoma with Degeneration (Low Power) Leiomyoma M Uterus Leiomyoma with Degeneration (Medium Power) Leiomyoma M Uterus Leiomyoma with Degeneration (High Power) Leiomyoma G Uterus Uterine Leiomyomoma (external view) Leiomyoma G Uterus Uterine Leiomyoma with Degeneration Leiomyoma G Uterus Uterine Leiomyoma (cut surface) Leiomyoma G Uterus Uterine Leiomyoma Leiomyoma G Uterus Uterine Leiomyoma (close up cut surface) Leiomyosarcoma G Bladder Leiomyosarcoma_of_bladder_neck Leiomyosarcoma G Colon Gastrointestinal Stromal Tumor Leiomyosarcoma G Colon Leiomyosarcoma of Colon Leiomyosarcoma G Small Intestine Gastrointestinal Stromal Tumor Leiomyosarcoma G Small Intestine Gastrointestinal Stromal Tumor(GIST) Leiomyosarcoma M Uterus Leiomyosarcoma of Myometrium (Low Power) Leiomyosarcoma M Uterus Leiomyosarcoma (Low Power) Leiomyosarcoma M Uterus Leiomyosarcoma of the Myometrium (Low Power) Leiomyosarcoma M Uterus Leiomyosarcoma of the Uterus (Medium Power) Leiomyosarcoma M Uterus Leiomyosarcoma of the Uterus (Medium Power) Leiomyosarcoma M Uterus Leiomyosarcoma of the Uterus (High Power) Leiomyosarcoma M Uterus Leiomyosarcoma of the Uterus (High Power) Leiomyosarcoma M Uterus Leiomyosarcoma of the Uterus (High Power) Lewey M Brain Lewey Body Linitis_Plastica G Stomach Linitis Plastica Linitis_Plastica G Stomach Linitis Plastica Linitis_Plastica G Stomach Linitis Plastica Lipoma G Soft Tissue External surface of a (benign) lipoma Lipoma G Soft Tissue External surface of (benign) lipoma Liposarcoma G Colon Liposarcoma Liposarcoma G Kidney Liposarcoma Encasing The Kidney Liposarcoma G Kidney Liposarcoma Encasing The Kidney Liposarcoma G Soft Tissue Liposarcoma Liposarcoma G Soft Tissue Pleomorphic Liposarcoma Liposarcoma M Soft Tissue Low power view of a liposarcoma Liposarcoma M Soft Tissue Medium power view of a liposarcoma Liposarcoma M Soft Tissue Medium power view of a liposarcoma Liposarcoma M Soft Tissue Medium power view of a liposarcoma Liposarcoma M Soft Tissue Medium power view of a liposarcoma Liposarcoma M Soft Tissue Low power view of an myxoid area in a liposarcoma Liposarcoma M Soft Tissue Medium power view of an myxoid area in a liposarcoma Liposarcoma M Soft Tissue High power view of an myxoid area in a liposarcoma Liposarcoma G Soft Tissue Cut and external surfaces of a liposarcoma Liposarcoma G Soft Tissue External surface of a liposarcoma Liposarcoma G Soft Tissue Cut surface of a liposarcoma Lissencephaly G Brain Lissencephaly Lobular_Carcinoma M Breast Lobular Carcinoma of Breast (Low Power) Lobular_Carcinoma M Breast Lobular Carcinoma of Breast (Med Power) Lobular_Carcinoma M Breast Lobular Carcinoma of Breast (High Power) Lobular_Carcinoma M Breast Lobular Carcinoma of Breast (Low Power) Lobular_Carcinoma M Breast Lobular Carcinoma of Breast (Med Power) Lobular_Carcinoma M Breast Lobular Carcinoma of Breast (High Power) Lobular_Carcinoma_in_situ M Breast Lobular Carcinoma In Situ of Breast Lupus_nephritis M Kidney Lupus Nephritis Lupus_nephritis M Kidney Lupus Nephritis Lupus_nephritis M Kidney Lupus Nephritis Lupus_nephritis M Kidney Lupus nephritis Lupus_nephritis M Kidney Lupus Nephritis Luteoma M Ovary Luteoma Luteoma M Ovary Luteoma Luteoma M Ovary Luteoma Lymphoid_Hyperplasia Salivary Glands Lymphoid tissue in Parotid gland Lymphoma M Brain Lymphoma of Brain Lymphoma G Liver Lymphoma in liver Lymphoma G Liver Lymphoma Lymphoma M Lung Non-Hodgkin Lymphoma of Lung (Med Power) Lymphoma M Lung Non-Hodgkins Lymphoma of Lung (Hi Power) Lymphoma M Lung Non-Hodgkins Lymphoma of Lung (Lo Power) Lymphoma M Lung Non-Hodgkin Lymphoma of Lung (Med Power) Lymphoma M Lung Non Hodgkin Lymphoma of Lung (Low power) Lymphoma M Lymph Node Malignant Lymphoma - low grade diffuse small lymphocytic Lymphoma M Lymph Node Malignant Lymphoma - low grade diffuse small lymphocytic Lymphoma M Lymph Node Malignant Lymphoma - low grade diffuse small lymphocytic Lymphoma M Lymph Node Malignant Lymphoma - low grade diffuse small lymphocytic Lymphoma M Lymph Node Malignant Lymphoma -intermediate grade diffuse small cleaved cell type Lymphoma M Lymph Node Malignant Lymphoma - intermediate grade diffuse small cleaved cell type Lymphoma M Lymph Node Lymphoma M Lymph Node Lymphoma M Lymph Node Lymphoma M Lymph Node Lymphoma M Lymph Node Malignant Lymphoma - intermediate grade large cell type Lymphoma M Lymph Node Malignant Lymphoma - intermediate grade large cell type Lymphoma M Lymph Node Malignant Lymphoma - intermediate grade large cell type Lymphoma M Lymph Node Malignant Lymphoma - high grade small non-cleaved cell type (Burkitts) Lymphoma M Lymph Node Malignant Lymphoma - high grade small non-cleaved cell type (Burkitts) Lymphoma M Lymph Node Malignant Lymphoma - high grade small non-cleaved cell type (Burkitts) Lymphoma G Pericardium Malignant Lymphoma Invading Visceral Pericardium
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springshowers
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posted
There are protests going on right now by illegals from mexico about new laws they do not like. They are risking being out in the streets in front of the police who now have the authority to arrest then and send them to the agencies that can send them back to Mexico.
But they feel so strongly that they do not just sit in their homes and hide.
They take the risk to be heard and to make their voices in numbers be shown. They know its a risk but they know that they have no chance of change unless they take such risks..
Not all of them are illegals but many are and its just one example of how sometimes you have to take risks to be heard and to invoke change.
I think that Lyme is swept under the rug. Lyme patients suffer more than any other disease I know of. Yes so many others have so much more attention and validation and funding and even flat out care and consideration for us and what we go through.
It is a bad situation and it has to change. The groups can only do so much. And yes there is only so much we can do since we are all so ill.
But as I said.. Even a nurse commented on how much in the last few years she learned from patients who spoke up and out that they had Lyme.
Awareness is step one.. Like Under Our Skin Movie.
I am sure that was their goal, to start the process of awareness and then change. The movie helped with awareness. But there is so much more to do and so much more we can do.
I do not think that any of the advocacy groups would be happy to hear that we are not even telling doctors at ERS and others that we have lyme out of fear. That is what they are trying to change.
I think we are all going to be a big part of that change once we stand up and stop living in fear.
I will admit I have done it too in the past. But I just realized I was not helping anyone really. Maybe my doctor ? Maybe? Maybe not. Maybe it was more hurting to the whole lyme community that is growing.
Doctors are needed and going to continue to be needed. THere will be a need for many more than we have now. ALready there are too few and we have to travel etc.
THis is not a good situation and I believe our behavior is not doing anyone new to lyme or the surge of new patients to be living in the past with OLD Rules and OLD ways.
That is part of this site. Many old timers still wanting to keep the old rules and old ways and "that is the way it is" Well that is NOT the way it is an things change and have changed and will keep changing.
Trying to keep those old ways and rules is hurting things and not helping things. This is just my own opinion.
I think we are acting stuck and afraid to move.
Time to think about the future and not the past.
Just my opinion..
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Keebler
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- To stand up for one's self before a firing squad is not the wisest move. There are other ways for doctor education that do not risk own's own medical file. Many other ways.
It's not the "old timer's" saying this - it's learned wisdom trying to save others' medical files from the kiss of death.
One must know their audience before they speak. It's just the smart thing to know the territory first. Then, give some thought as to how to proceed, how to act with a good plan and with those who have the knowledge for the best approach.
Once a medical file is marked, the repercussions can be huge. That requires much thought. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
Never. It's even worse having Lyme along with electromagnetic hypersensitivity...and being forbidden to use BOTH the "L" and the "EHS" words.
Posts: 495 | From USA | Registered: Mar 2010
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