Everyone keeps asking me questions about how I am doing and what is going on. I'm still learning myself. But it's hard for me to continually talk about it to everyone. If it's all I talk about then I can never escape it. I appreciate people asking all the time and understand everyone has questions. Thought maybe this would be a better way of letting everyone know what is going on. I will link each entry to Facebook or send it by email so you can all stay up to date on my journey.
With that being said, I didn't know a damn thing about chronic lyme disease. The majority of the people are in the same boat. All we know is that you get bit by a tick, get a bullseye rash, take some antibiotics, and then you are better. Well, that only works if you catch it right away.
My journey started about 10 years ago when I had this horrible migraine that would not go away. Light sensitive, joints hurt, nauseated, etc. I was taken to the ER and all they did was dish out some pain medication and do a CT Scan. The next day I went to my doctor for a follow up. I barely made it there alone. The doctor found me in a corner, lights out, covering my eyes and in tears. He immediately admitted me into the hospital and thought maybe it was meningitis or west nile. They ran every test known to man. Bloodwork, EEG, EKG, MRI, etc. They assigned a neurologist to me and he just put me on some meds and 24 hours later I was at home. I was off work for a month and in bed the whole time with my migraine. Finally it died down and I went back to work. The medication wasn't working and my doctor suggested another neurologist. In the meantime I did some research on my own on the internet. Put all my symptoms in and Fibromyalgia kept popping up. When I mentioned it to the neurologist he agreed, changed my medication and I started to feel better.
At the time I was extremely stressed out due to a new job that required a lot from me and a husband that was mentally abusive. Finally left the crazy ex and the stress seemed to disappear along with my good insurance. I could no longer afford the medicine I was on. Lyrica is extremely expensive so I decided to try and go without it. I did pretty good for a long time.
About 3 years ago my symptoms were back and seemed to be worse. Back on the Lyrica I went. My insurance was great so why not. It worked for a few years, not perfect but took care of all the nerve pain I had. I was blaming all my other pain on my job as a truck driver. For years I've been told to find another profession because my body can't handle it. Bouncing down the road, vibrations from the truck, and just stress from the job.
My symptoms were nerve pain, muscle weakness, muscle soreness, sore throat, low body temp with an occasional fever, all my major joints inflammed and swollen, foot pain, felt like arthritis in my hands, occasional twitch in my finger or face, panic attacks, headaches, sound sensitive, light sensitive, tingling in hands and feet, bee stings in random places, occasional tooth pain in different teeth, fatigue, can't lose weight, night sweats,....I could go on and on.
Not too long ago I was diagnosed with Hashimoto's disease. Under active thyroid. So I started medication for that and after several months nothing changed. In the meantime someone close to me, who wants to remain nameless, had also been suffering for a long long time from some mysterious illness. Been to countless doctors, all different kinds of doctors. Each one giving a different diagnosis, always puzzled but very willing to write a prescription. One diagnosis was Fibromyalgia, once upon a time. Until early this year, they ended up at a Naturopath doctor's office. It didn't take long to get the diagnosis of Chronic Lyme Disease. So I started looking into this disease. I knew Lyme Disease but not Chronic.
The more research I did on Chronic Lyme Disease the more frightened I got. I found a symptoms list and decided to print the list out and check off everything that I had. Out of the 60 symptoms, I had all but 12. Unbelievable. Why hasn't a doctor ever mentioned this before? I was pissed off because no one ever suggested testing for it.
Then I watched Under Our Skin. Documentary about Chronic Lyme Disease. Pissed me off even more and it all made complete sense. Chronic Lyme is the biggest epidemic in the USA and they are hiding it. If everyone knew about it and got tested for it, so many people would have it and it would bankrupt the system. They are being misdiagnosed with things like MS, Dementia, Parkinson's, Fibromyalgia....it's a long list! The pharmaceutical companies are making a killing off all the prescriptions for all of THOSE diagnosis. The insurance companies will pay for regular Lyme, the antibiotics that will initially take care of it. But no one is allowed to say Chronic Lyme. It doesn't exist in the mainstream medical community. No one will touch it. They are afraid they'll be taken to court and lose their license. They can't make money off of it because there isn't a magic pill that will make it all go away or tame it. Who puts money in the politicians pockets? Lobbyists that work for pharmaceutical companies and lobbyists that work for insurance companies.
According to the CDC, every year 30,000 cases of Lyme disease are reported. "Preliminary results from three different evaluation methods suggest that the number of people diagnosed with Lyme disease each year in the United States is around 300,000". And they also stated that could actually be 1,000,000 people a year. If one million people a year got Lyme, everyone would have it within a matter of time.
You can take the blood test and it can come back negative. Take it again in a year and it's positive. The bacteria borellia hides in your body. Then it designs your very own customized nightmare. Everyone has a different journey with it. Some might have heart and joint issues. Others might have memory and muscle issues. The longer you have it the worse it gets. And it can kill you.
Please be tested! Don't see your regular doctor for the tests, go to a Naturopath (N.D.)
End rant for now. I'm going to document my treatment on my next blog entry. And will continue to do so as I go along. This journey has just started.....to be continued.....
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