Sometimes when you have lyme you are prone to sudden rages that seem to have no cause. This phenomena is called "Lyme Rage". Some of you have experienced this with yourself or someone you love. The title of my blog isn't about this definition, instead I used this common term in the Lyme Community to set the stage for what I really am feeling led to write about.
I am enraged at the treatment lyme patients receive from the people who are suppose to care for them the most. I am enraged at the stubborn and arrogant attitudes from many in the medical profession, who like blind mice, follow the IDSA with no independent thought of their own, refusing to do the research and ask the questions with an open mind, willing to HEAR the answers. Then and only then can someone make an informed choice as to what side of the fence to stand on.
You may say to me, "I'm sure doctors do that". Yeah, I thought that too, that's why I have been sick for so long. I blindly, unquestionably, trusted everything my doctors told me. Even last summer, when friends started trying to point me in the direction of lyme, I simply accepted my doctor's answers and didn't research it myself. It wasn't until I was unable to walk and having seizures, that I became desperate enough to look at the possibility of lyme. Especially when I was sent home from the hospital told, "we don't know what is wrong, sometimes we can't figure it out", and when the neurologist said, "There is nothing wrong with you".
OH REALLY?
After having MONTHS of sitting around my house, I have done my homework. I am SHOCKED at how uneducated our medical community is on this topic. They strongly state chronic lyme doesn't exist, it's easy to test and easy to treat. They say this, and then give out information that is totally wrong, even wrong according to the CDC. Multiple doctors told me the ELISA test was accurate. WRONG! The CDC says that lyme is a clinical diagnosis. Positive tests are only needed for reporting to gather statistical information. They are not intended for diagnosis. Despite the inaccurate ELISA tests, doctors won't look further into a possible lyme diagnosis if that test comes back negative. It doesn't matter what your symptoms are, it doesn't matter if you have ruled out other diagnoses through testing, negative ELISA means no lyme.
No doctor ever thought to give me the Western Blot. They don't give the Western Blot test unless the ELISA comes back positive. The western blot gives more information for the doctor to use to help diagnose lyme. It still isn't accurate, but it gives more specific information. I'm lucky, when I finally got my Western Blot done, it came back glaringly positive. I already had been given the diagnosis of lyme based on clinical observation, but now that I have the positive Western Blot, I feel I can be a huge advocate when discussing the existence of chronic lyme, and the benefits of long term antibiotic treatment. NO ONE, can dispute I have lyme. I have the VERY POSITIVE test, I have more then enough clinical symptoms, and I have had enough testing to rule out everything else.
So yeah, I'm angry.
As many of you know, WABI featured my husband and I in a story about lyme. Since then I have experienced the negative back lash that many "lymies" talk about, but I had yet to go through myself.
I'm curious how anyone, has the right, or knowledge, to tell someone who's ill with lyme, that it isn't real, or that it's all in their heads. I am shocked and appalled at the behavior of friends and family of lyme patients, who discredit or ignore their supposed loved one. Many lyme patients handle this by not telling anyone what their diagnosis is, and by hiding their symptoms. Not, me, I have a strong voice, and I will use it! The more you push against me the more I will push back when it comes to this particular topic.
Anger isn't always bad. It's ok to be angry over actions of injustice. It's what you do with your anger that determines if it is a positive or negative element in your life.
So, I am going to finish this blog, by refuting all of you who have said I don't have lyme, there is nothing wrong with me, it's all in my head, I've been misdiagnosed, I'm grasping at straws............
As I stated above, there is no refuting my diagnosis, even the CDC acknowledges it. I'm not going to tackle that argument here. Be advised, you DON'T need a positive lyme test to be diagnosed with lyme. I was diagnosed based on symptoms well before my blood work came back. Many people test false negative. I don't want to discuss false positives. Any discussion of that and I simply will point you to the CDC's diagnostic criteria. No argument there.
I am going to discuss long term antibiotic treatment.
Where is the common sense in stopping treatment when the patient is responding but not completely well yet? How does that make sense?
My insurance only paid for one month of my most needed antibiotic. That is what the IDSA guidelines suggest, so the insurance can justify refusing payment. Here's the dig, if one month is all that's needed, why am I, three months into treatment, seeing significant improvement? I'm, once again, lucky. (plus I have one of the best llmd's on the east coast). If I had stopped my medicine after one month, I'd still be bed ridden, I'd still be having seizures, it's not an exaggeration to state that my life was at risk. So,I've been paying for my meds out of pocket, I'm more alert and awake, I'm up and around doing light housework, and best of all, I'M CURRENTLY NOT USING MY WHEELCHAIR!
I'm not completely better, of course. I still fatigue easily, I have trouble out in public due to sensory overload, and I still have joint and muscle pain. So, do you think I should stop treatment or should I keep spending my own money on meds to see if I continue to improve?! Mainstream doctors would STILL tell me, despite the evidence, that I've been on antibiotics to long, or that my recovery is psychosomatic. Use your imagination as to what my response to that is!
So, here is what I have to say to those of you who have ignored or discredited someone who has lyme, "SHAME ON YOU"! This is slowly become a heated political issue, and in twenty years, when this is resolved, how will you feel when you look back and remember how you treated or negatively talked about someone who has lyme. I only hope that you never have to experience this horrible illness yourself. Unfortunately, even the CDC statistics show that lyme is a growing epidemic, worse then any other vector born illness. This means that you will, one day, experience this disease up close and personal whether you want to acknowledge it now or not.
Since when do people blindly accept what our government says? We, as citizens, have an obligation to be diligent, and to keep our representatives in check. We voted them in, we can vote them out. They are in government to do the will of the people. It is irresponsible and lazy to blindly follow whatever our government says.
Lastly, it shouldn't matter what the diagnosis is, you should be supporting those you know who are ill no matter what the cause. All you have to do is say, "I support YOU, I just can't support the diagnosis." Once this statement is made, you should still BE THERE for your friend or family member. Ignoring them is a horrible thing to do. Don't think they don't notice, they do. I will tell you I am very aware of the friends who have ignored me and my illness. It doesn't matter if you agree with my diagnosis or not, I still was unable to walk, I was still having seizures, I am still unable to work or participate in life. The only reason to ignore me would be if you thought I was faking it. If that's what you think then you don't know me at all. Bottom line, it doesn't matter what the illness is, if your loved one is suffering then you should be there for them. End of Story.
If you are interested in where many of our representative are on this debate, read this petition and the information in it. If you choose not to read it, then you are choosing ignorance.
http://www.change.org/petitions/the-u-s-senate-calling-for-a-congressional-investigation-of-the-cdc-idsa-and-aldf?share_id=ByifDHrMlm&utm_campaign=share_button_action_box&utm_medium=facebook&utm_source=share_petition
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