I have so many causes that are dear to my heart, but as of now, Chronic Lyme disease is the one topic I will talk about the most. I had NO IDEA the controversy around it. I had NO IDEA that it's a topic doctor's aren't educated on. I had NO IDEA a negative lyme test doesn't mean you don't have lyme.
I asked my PCP today if she had heard about the legislation passed in June concerning informing patients who are tested for lyme that a negative test result doesn't mean you don't have lyme. She had just heard about this in passing conversation over the past month or two.
Did you know that if you don't pass the initial lyme screening doctor's wont' test you for the more accurate Western Blot? That is CDC guideline. How does that make sense? You don't pass the more inaccurate test you don't get to have the test that is more detailed? What?! Seems pretty backwards to me.
I have spent 20 years ignoring lyme because that initial test came up negative. That test that only tests for one of the over one hundred strains of lyme. Even better, that one strain is a strain from Europe. (Plant fist to head)
I'm trying not to be angry. I'm trying to reprogram my brain. I have spent twenty years telling myself that symptoms I experienced weren't' as bad as I thought, or that they were in my head. Even now, when I'm having a focal seizure, my body is convulsing and my brain is saying "cut this out, you can control this, you're letting this happen" This is what twenty years of misdiagnosis has done to me.
So, I feel it's important to share this journey. I feel it's important that you know things, such as finding a doctor who treats chronic lyme means joining an underground network of private messages and quiet connections. Doctor's run a great risk when they treat chonic lyme.
I'm not a doctor, so I run no risk.
I will share this journey and hope that by doing so I am raising a level of awareness.
Light needs to be shed on the suffering of hundreds of thousands of citizens.
Light needs to be shed on our insurance companies refusal to pay for treatment.
My Lyme is neurological. I also most likely have co-infections making my treatment even more complicated. I need IV antibiotics because those nasty bugs are in my brain and the pills can't adequately cross the blood brain barrier. Insurance will only pay for one month of IV antibiotics and one month of in-home care.
My casual estimate is that we will be paying $1000 a month for medicine, supplements, appointments and blood work. I have no idea how we are going to do it, but we have to do it. My life literally depends on it. The CDC and our insurance companies don't want to acknowledge patients like me.
I want to live this disease out loud. I will be talking about it on facebook, please don't think it's attention seeking or complaining. I am trying to start dialogue that will not only educate, but also help others who are sick and don't know why. I don't want others to wait twenty years to figure it out.
I will be posting pictures and videos. I am doing this because I know what would have captured my attention before this. I saw things about LYME but I didn't think it was any different then any other disease people suffered from. The difference is the medical community not seeing, not understanding the suffering of the patients they see. The difference is that patients are forced to pay out of pocket for their treatment.
My diagnosis is a clinical diagnosis based on symptoms and the ruling out of all other possibilities. My diagnosis is confirmed by my reaction to the start of treatment. I am currently taking an antibiotic to stir the little bugs up. I will then have blood drawn Monday. The blood will be sent to a lab in California that specializes in Lyme testing. I will also be tested for co-infections. It is uncertain if anything will show up because I have been sick for so long and my immune system isn't responding to the disease. They test looking for an immune system response.
The first day on this antibiotic I felt like I had the flu and had a seizure. I am so thankful for that! It is a clear sign lyme is being killed. The die off of the bacteria cause what is called a HERX reaction which is basically an increase and intensifying of symptoms. So when things like tinnitus set in (a new symptom) I rejoice because I know there is a war going on and my body is doing it's job.
I say bring it on. I don't mind being sicker because I'm ready to get better!
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