|Dana's - Story - Creator of TALD (Truth About Lyme Disease)
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|Author:||Cog1st [ Mon Feb 18, 2008 10:48 pm ]|
|Post subject:||Dana's - Story - Creator of TALD (Truth About Lyme Disease)|
Dana's (Story) - Creator of this website TRUTH ABOUT LYME DISEASE
Link to return to main website : http://www.truthaboutlymedisease.com
**Over 100 subjects and topics of interest regarding Lyme/co-infections can be found by scrolling up to the top of this page & clicking the green house (in the upper left hand corner at the top of this page) at the "Board Index" the clicking "Everything You Need to Know About Tick Borne Disease"
**The following few paragraphs are my message to the lyme community*** (to skip this message and go straight to my story scroll down to the large link below.
If you are interested in reading some Lyme illiterate Md's remarks to me when I was searching for what was wrong, scroll down beyond story link):
To all my Lyme friends ~ The silver lining in this cloud has been you.
The world couldn't possibly understand what we have endured, I would have never believed a disease like this existed simply from the bite of a bug. Maybe this website and our stories will give people a glimpse and my main hope, help other's understand one of the worst diseases that no one should have to endure.
To add insult to injury, the horrible mistreatment of MD's and the ridiculous misdiagnoses they come up with (scroll down to see what some illiterate Md's said to me). All I can say is thank God for LLMD's (Lyme Literate MD's) they have saved our lives.
I never knew what Lyme Disease was and now that I have lived it and understand it, I have come to the conclusion that people with Lyme Disease are quite seriously the bravest people on earth. Living a disease that was not meant for the weak & yet for some reason we have been "chosen" to live through one of the greatest challenges on earth, so challenging that no one could possibly understand it, unless they have had to live with it.
I sadly, but honestly don't know many with Lyme that haven't expressed to me that they would rather endure cancer, as it has a definitive answer, wellness or death. Many have told me they have thought about an early "exit" to this living hell on earth, but because they "love their children" or "don't want to hurt their family" we have endured the horrible treatments from Md's, even family members that don't understand, medications that make us so much sicker with endless herxing. We have gone on hoping that one day our health can be attained once again.
I am no different, I have too have felt this way - hopeless, helpless, despondent and depressed and even suicidal as you will see in my story. I always considered myself strong, until I met the Lyme monster, a giant that brought me to my knees, but giants can be brought down - look at David and Goliath, the bigger they are the harder they fall. As a lyme friend once said to me, "You don't get lyme, until you get lyme". That has stayed with me since the beginning. There is no explaining this, there are no words. Family and friends think we "look great" so we must "feel great" - it is deceiving that way.
The silver lining in this cloud is that I have met so many great Lyme patients, sane as the day is long, kind, caring, supportive and passionate about educating other's and fighting for proper Lyme treatment. Fighters from the heart, quitters...NEVER!
Also, had I never been diagnosed - 5 other's in my family would remain with Lyme never knowing what was wrong, searching forever possibly and never finding the answer. I am grateful my diagnosis helped diagnose them.
Day by day by day we wake up with hope that maybe today we will take a few steps forward, or that maybe by this Christmas we will be able to join our family in their holiday parties and dinners and truly enjoy ourselves. It does happen, it will happen..slowly, ever so slowly, we walk this out one day at a time and progress at the rate of a snail it seems, but progress none the less and then the finish line we will be able to see in the distance. What seemed impossible - is not.
Never allow this war to over take you, we may lose a battle now and then, but we will be victorious, by keeping our eyes on that finish line.
Please know you are all in my prayers daily. I have cried at your emails and messages to me, I want nothing more than to help those find doctor's who will listen and treat them and for all of us to beat this. I believe we can and will, for now we soldier on, until we conquer this disease.
Many blessings and health,
My story in its entirety: http://www.truthaboutlymedisease.com/about.html (Please note, my story could be considered an "extreme" case of Lyme, many with Lyme may have only a few symptoms or they many have many more or different symptoms, than I have had, Lyme presents in many ways - ONLY a Lyme literate Md can properly diagnose you)
An edited version of my story is in the July 2008 issue of Joyce Meyer's Magazine - page 16. The magazine was available by pdf until 2012 and has since been removed.
To read other patient stories, click on Lyme Disease Patient Stories at the top of this page
My Frantic Search for help begins with mainstream Md's
Notable Quotable Illiterate Doctor's Comments made to Me
"Stop reading the internet and let ME be the doctor!!!"
"Oh, please none of the pain makes sense, get a life, you are fine, here go see this chiropractor".
"Numbness on one side of your body, that doesn't make sense and you sound crazy saying it"
"Are you ready to talk about your emotional problems"
Dr. Can I please see a neurologist? "No, we know what this is and so do you". What is it? "It is anxiety".
"If you smoke stop and you will be fine, I tell everyone with any problem that is the answer".
Do you think I have MS? Doctor, "No, we only diagnose oh, maybe one case a year of MS". (I have brain lesions)
As I sat crying, a Neurologist shrugged his shoulders and patted me on the back "I don't know what's wrong, hope you feel better soon!"
"Well we have tested you for everything, it can only be anxiety, depression or fibromyalgia" When I shot back an angry look he said, "Well, maybe I don't know you well enough to say that, but there is NOTHING else it could be!"
"You have tender points it is fibromyalgia"
Hospital took blood test and chest xray, but was most interested that a "humane" doctor had put me on vicodin, that wasn't touching the pain by the way! The MD at ER asked - "Why are you on pain meds? That is ridiculous, this is obviously a chronic stomach issue, follow up with your primary".
Lastly I insisted on an LD test and to be given antibiotics while the test was pending. 2 weeks later the doctor called "'Your lyme test is negative, did the antibiotics help" I said, "No, I felt worse." Doctor response "Then it obviously isn't lyme". (He didn't recognize the classic herxheimer reaction - the worsening of symptoms on antibiotics -OBVIOUS proof of Lyme).
"You are very high strung, obviously it is anxiety, just look at you" (I could barely walk now at this point and I was losing function I was hysterical)
Even spoke w/ my dogs veterinarian about lyme "Oh, that is extremely rare around here".
Later when diagnosed a nurse said, "How'd ya get LymeS?" (It is Lyme Disease NOT LymeS with an "s")
The doctor of that nurse, "How did you get Lyme Disease, have you been back East? How could you not feel better after a month on amoxi???"
[b]My final words to the last mainstream doctor I saw and I was yelling at him after many visits to him, I told him: "This will not be found in an x-ray, an MRI, an ultrasound, a CAT scan or any other test you have run. Apparently you are missing something huge in my BLOOD! I guarantee the problem will be found in my blood and I am willing to BET there is a pill to cure it and YOU will be the first to know when I find a doctor who knows what he is doing!" (This was the Md who told me to stop reading the internet & diagnosed me w/anxiety. Later when I was diagnosed, I sent him a letter to let him know I had several tick borne diseases and 4 active viruses. He sent a letter back apologizing, recanting his "anxiety" diagnosis, saying "it was only a possibility, one of many possibilities, I wish you a speedy recovery"....amazing, speedy recovery? Because of his illiteracy and delay I was stage 3 long before I got help from an LLMD. Please Listen to your instincts, they will never fail you![/b]
Even the IDSA lists Northern California as one of the highest endemic regions in the U.S. Vet's needs to study, along with every other Md in California and KNOW this is not a disease found only "back East".
(Anyone wishing to have their story added, please email your story to me, check for spelling, accuracy, etc, as it will be printed here exactly as you write it)
That which doesn't kill you, makes you stronger
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