I’m so tired of people NOT thinking I’m sick because I “don’t look sick.” I wish that people could see exactly what is going on inside of me. I’m hate when some one finds out you have Lyme and they say “Oh I know someone who had that.” The co infections almost no one has heard of so they assume that they mustn’t be “that bad.” What I want is to scream at these people “I’M FIGHTING FOR MY LIFE AND YOU MORONS CAN’T PULL YOUR HEADS OUT OF YOUR ASSES AND SEE THAT!”
So I’m going to take a moment and explain exactly what Babesia, Bartonell, Mycoplasma, Lyme and a Chronic Multisystemic Inflammatory illness like for me at this moment.
Lets start with Lyme since most people naively assume its curable. Lyme is ONLY curable in Stages 1 and 2. Due to the lack of Lyme Literate Doctors and refusal of the CDC to change their guidelines, most patients end up in Stage 3 or Chronic Lyme for which there is NO CURE! Doctors rely on their scientific tests for Lyme when its actually a clinical diagnosis. Symptoms are vague at first and a large part of patients with Lyme are misdiagnosed because they are too far advanced and their immune systems are so compromised and worn out that their systems can’t/aren’t producing enough antibodies to test positive on a blood test (which are flawed and have a high rate of inaccuracy according to the makers of the test.) Lyme is an epidemic. Lyme is more prevalent than AIDS was at its highest rate and the Lyme numbers only continue to climb. AIDS has claimed more lives than Lyme but the suicide rate of Lyme patients is growing out of control. Thousands are dying either at their own hand because they can not take the pain and the lack of treatment or from complications of the disease, yet people continue to see Lyme as a minor blip in life. LYME DISEASE KILLS! And if people don’t wake up and start learning about it and demand changes, they are going to start losing their loved ones at a rapid rate. Lyme starts out with vague flu like symptoms, joint problems and fatigue. (There are over 300 known symptoms for Lyme.) In my case, I did get a rash (typical bulls eye.) I went to the doctor and got 3 weeks of Doxycycline. What I didn’t know at the time is that Doxycycline wasn’t prescribed long enough. To be curable it must be taken for a minimum of 4-6 weeks. System fail #1. That was 5 years ago. 2.5 years ago I was tested for Lyme by my neurologist, at my request. He told me I tested negative for Lyme on the Western Blot test but never bothered to tell me that I had tested positive on 3 bands, just not the 5 required by the CDC. Failure #2. I got sicker and sicker. I has pain every day, I was always catching something (a cold, the flu, etc.) I started to have tremors and a whole slew of “unexplainable symptoms.” I started having seizure, both grand mal and non epileptic form. I had night sweats and nightmares. Intermittent fevers. Heart palpitations and chest pain. These are just to name a few. Lyme was attacking my brain.
Let’s step over to Babesia. It is a sister disease to Malaria. Everyone knows, untreated Malaria kills. Per my doctor, I would have been dead within 12 months of my diagnosis. DEAD! It doesn’t get any worse than that. Babesia is a parasite. Millions of them living in my body. Feeding on my red blood cells and causing them to explode, thus the parasites find more red blood cells and multiply until they explode again. They cycle continues. Living things do not want to die. They want to live and with treatment to kill them, they are fighting. My blood pressure is so low now that if it goes any lower I’ll be on medication for that as well. Babesia is eating my insides. Its a parasite that will kill its host to survive.
Add in Bartonella, another organism that is willing to sacrifice its host for its own personal gain. This one however likes the brain. It settles in there and impairs cognitive function and blood flow. Without adequate blood flow you can incur irreversible brain damage (I won’t know how much damage is done till I am in remission.) Keep in mind that that the Lyme, Babesia and Bartonella are all hiding inside my body hoping to not be found and to again survive.
Last but not least, Mycoplasma. This can be found in humans very commonly but at a low level because a healthy immune system can fight it. But when your immune system is compromised it grows out of control and you feel like you have walking pneumonia at all times. I can’t eat or drink from the same glass/plate/utensil/etc., because it is passed through saliva. Imagine not be able to kiss someone for years! Im scared to even attempt a relationship because how to you explain all this to another person and not have them run for then hills?!
I’m in treatment and the purpose of treatment is to kill as much of this “crap” as I can. Hopefully I should be left with just remnants of Lyme, which is considered in remission. Where do these dead things go? They die inside of me. I have stuff to help “rinse” it out, but just as with any other creature, death causes release of toxins and my body has to try to process them out. My liver and spleen are enlarged because they can’t keep up with the death rate. All of it goes through those 2 organs.
I titled my blog Lymestorm because it is a mega storm inside of my body. (Think Superstorm Sandy on steroids.) It was also inspired by the band Halestorm. Lzzy Hale has given me lyrics to make me realize I am strong enough to beat this even on days like today. This morning I sat in bed and tears just poured down my face, from pain, from exhaustion, from everything. I looked at my bathroom door where I have a quote from Lzzy Hale and even through the tears I could feel her words…
“Every challenge you face is a chance to prove you are extraodinary. Thrive in the fact and in the darkness. Nothing is impossible, so don’t let this world break you. Be yourself and be proud to be misunderstood. Stand out in all your colors. The ones who live to bring you down are weak, they are afraid to be themselves and live their own life. They are content to blend in. As freaks, we take the hard road. We are leaders, creators, artists and inventors. Its never easy…but we take the risk because we are worth it! Support each other and together we will blaze our legacy in this side of the earth! Today, make a promise to never again let anyone or anything make you feel like you are nothing. Because you my little freak, are the heart to my soul. Be proud to be a freak…Write your name in gasoline and SET THAT SHIT ON FIRE!”
So watch out, because while so many have turned their backs on me and left me to rot and die during my greatest time of need, when I am in “remission” and better, I’m coming back to blaze my own trail! I’m going to fight for those who can’t, I’m going to cause changes and I’m going to do it with a healed heart and soul, with the love of God, my family, and my “TRUE” friends!