Tuesday, November 23, 2010

Chronic Lyme Disease

The reason I chose to start this blog, making my life and struggles suddenly very public (sorry Mom!), is because I am appalled by the lack of awareness for Lyme Disease. If you know me, you know that I'm a very passionate person, and I've never been good at keeping quiet when I feel strongly about something.

There is a lot of controversy surrounding every aspect of Lyme Disease. By reading my story, you are hearing the voice of a person with Chronic Lyme Disease. Did you know that many doctors are trying to say that there is no such thing as Chronic Lyme Disease? We are being told that, other than a few very rare cases (which are supposedly very easily treatable), it doesn't exist. But as more and more people are not being properly diagnosed in the beginning stages when Lyme is easily treatable, more and more cases are becoming chronic and, thus, very difficult to treat.

Chronic Lyme Disease deserves more awareness, more research, more facts, more truth. Many doctors are turning their heads away from those of us suffering from Chronic Lyme Disease, slapping us in the faces by telling us that what we have doesn't even exist or is easily treatable. Doctors that are standing up for us, choosing to treat this disease in ways that they see fit, are losing their medical licenses. People are dying of Lyme Disease all over the country because they can't get the care they need. It is a very messy and political situation, and I don't have the time or strength to go more in detail. (I can point you here if you are the type who likes to do research; if nothing else, check out the many links at the bottom of the article citing numerous lab studies done on Chronic Lyme Disease; as a caveat, I haven't had the chance to check all of the links.)

Lyme Disease has asked, no demanded, that I pour every last drop of strength that I have into fighting for my life. My body is in a very, very fragile state right now. What little bit of energy I have left goes into fighting for validation of a disease that is not even considered by many doctors to exist. I have to fight for insurance coverage for more treatment of this "easily treatable" disease. I have to figure out what I will do if my doctor no longer has a job for being brave enough to treat my "easily treatable" disease.

Doctors say there's no reason to continue with antibiotics after a few weeks. They say there's no proof that it helps. Yet, here I am. I'm back on antibiotics again, and I feel like I'm slowly emerging from the pits of hell (also known as Chronic Lyme Disease). After being off of antibiotics for a few months, and thus almost totally housebound, I've been back on them for almost two weeks and I can now leave my house for short periods of time again. I'm still very weak and in a lot of pain, but it is a huge improvement.

There's nothing rare about what's happening to me. It is happening all over the country. Person after person after person, chronically ill from Lyme Disease, able to function again only after long-term antibiotics. We don't like this option either, but we deserve our lives back, and we deserve the chance to try this option that has helped so many other people with Lyme Disease. Doctors don't give a second thought to treating things like acne with long-term antibiotics, so given that we understand the risks involved, what makes Lyme so different? And where is the research to find a better treatment? While doctors are so busy butting heads over whether or not Chronic Lyme exists, is anyone left out there working on a cure for this disease?

Thank you to the brave doctors and scientists out there who are standing up and fighting for us, risking all you have. We can never thank you enough and we wouldn't be here without you!

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