posted
This post is about some Anger, Frustration, Raving,and Dis-Belief of how some of us are treated,so please excuse my Ranting!!
I've been a member of this sight for a couple years now, I think, can't remember how long for sure? I have not written or even logged in for some time, because I needed to figure out if my symptoms would go away or if I just wanted alot of excess attention from doctors.
Well, I've decided that this pain, memory loss, anger, and the list goes on, is NOT IN MY HEAD, and that this is not the attention that I want.
I'm a 33 year old recently married mom of 3 and I live with this disease every day. My children and husband live with this disease and it's taking a huge toll on me and my family.
I have not been diagnosed, have been tested 3 times and the first test came back that I didn't have it, second test came back in-between (what ever that means) and the third test came back inconclusive. So I can't get a doctor to treat me for the lymes and I have a feeling when I finanlly do get treatment the disease will be so far progressed that it won't matter if I'm on medication or not.
I used to have a career, unable to work anymore, don't get me wrong, I love being home with my kids, but I miss my career. I've gone through the disability process have been turned down 3 times, now I'm waitng for a hearing with a law judge.
I've been told that I've had everything from Lupus, MS, Cancer, and every other diease, illness, and syndrome that the doctors can come up with. I've been to the #1 hospital in Minnesota and I was told that there is nothing wrong with me and that it's all in my head. This doctor that I saw told me that I was waisting his time and other doctors time because nothing is wrong with me, and that I needed to stop waisting time with all these "Specialists" because they need to treat others who are "Really Sick" and not just looking for attention and pretending these symptoms exist.
Since that I've seen 4 other doctors and those others were about the same, not as rude or as bad, but being told you are going to die and not see my children grow up I guess that is almost as bad.
When I did find out that I was not going to die, almost 6 months later I was relieved but very angry and all I got was a "Sorry!" I stopped seeing doctors all together for 6 months because I couldn't handle the humiliation from the doctors, lab workers, nurses, and some of my fmaily who all thought that I was a hypochondriac.
I have printed off the symptoms of this Disease and guess what I have checked them all, except the ones for males (obviously). Everytime I went to a new doctor I had a copy of the Symptoms of Lymes Disease, some took it, others glanced at it and gave it back, and one doctor tore it up and said that he didn't need help doing his job, he was the one who went to school for years, not I.
It is now 2007 and still no treatment in sight, nothing has changed. Some symptoms have changed, gotten worse, new symptoms, and still almost 4 years of having these symptoms I still can't get a doctor to listen and hear me without insulting me.
This has been extrememly hard on my whole family and myself. I've gone through the depression stage and I'm being treated for that, but so what! What about my "Real Illness", what about that? Can't I find relief for me and maybe get some of my old life back that I've lost? I suppose not!
So my advise to anybody is that keep fighting, for believe it or not, I'm back at seeing doctors again. Still NO LUCK, but I'm hopefull, maybe, just maybe it will happen this year. Maybe they can give me a test that might actually say those beautiful words, "Positive", but I'm not that wishful, but maybe one day.
But to everyone, stay tuff, be strong, and keep your head's up. For it will happen and soon everybody will be treated for Lymes who have Lymes and the doctors will start listening to us and looking "OUTSIDE OF THE BOX!"
Until that time, Life Goes On!!
Sincerely,
Mom of 3
[ 24. April 2007, 09:54 AM: Message edited by: Mom of 3 ]
-------------------- Best Friends Are The Siblings God Forgot To Give Us!! Posts: 24 | From Wabasha, Minnesota | Registered: Jul 2006
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Ahhh, the old Mayo "all in your head" diagnosis. Many with Lyme were misdiagnosed at Mayo, including myself. There have been many posts about people's mistreatment and poor Lyme experiences there.
I had all kinds of abnormal labs and tests there, but of course they never tested me for Lyme. Despite my abnormal labs, MRI, EEG, etc they concluded for me, as well, that it was basically all in my head and referred me to a psychologist.
The six digit $$$$$$ bill almost beat me home from MN.
You are right, it is not right how people are being treated when a diagnosis is not black and white. It is an injustice. I am sorry you have been treated so poorly. I hope you will be able to find a good LLMD who is compassionate and knowledgeable about the symptoms of Lyme.
I have been there too! It took me years and 12 doctors to finally get a diagnosis.
I agree wholeheartedly with the advice given by imanurse. Get a test from Igenex. My western blot from another lab came up completely negative but through Igenex I was CDC positive.
Also, get tested for co-infections: Bartonella, babesia, erlichiosis. I was approved for social security disability on my first try and I believe that testing positive for Bartonella had a lot to do with that. Sometimes for whatever reason they are more willing to consider the coinfections rather than the Lyme itself. It could help.
I really feel for you - this is a horrible disease and it is so awful to be treated like a whiny hypochondriac, which happened to me on several occasions.
Hang in there!
Alison
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The obscure we see eventually. The completely obvious, it seems, takes longer. --- Edward R. Murrow Posts: 923 | From California | Registered: Aug 2005
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You have been seeing the wrong doctors. Believe it or not there are LLMD's who will treat WITHOUT a positive Lyme test. Don't waste any more time going to docs who do not believe in Lyme. Use your time and energy to fight the disease instead of the docs.
Please go see a real LLMD -- use the seeking a doctor forum to find a real LLMD.
Almost everyone here has been undiagnosed or misdiagnosed at some point. We do understand what you are going through.
Remember that even the CDC says the Lyme is a clinical diagnosis.
Good luck.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
Hey Mom!*)!!! You need a good Lyme doc- it is almost impossible to find docs who will treat w/o positive tests in this age of persecution but they are still out there!!!!!!!!! I hope you find one!!!!!!!!!!!!!! And if it is not Lyme a good Lyme doc will find out WHAT it is- my LLMD knows every Lymelike disease upside down and sideways to do a thorough Differential Diagnosis-by someone who believes you are not crazy! You don't sound the least bit crazy- I am sorry it has been so hard!! Best wishes, Sarah
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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I want to THANK EVERYBODY who posted and talked. It does help and it took alot to realize that I'm NOT CRAZY!!! But I believe that I finally realized that talking to others with this horrible disease does help, so 1000 THANK YOU'S to ALL and Take Care!!
-------------------- Best Friends Are The Siblings God Forgot To Give Us!! Posts: 24 | From Wabasha, Minnesota | Registered: Jul 2006
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