It’s been a while since I posted anything on here and I just saw the annual charge on my credit card so HollyLyme is going to live another year. Why not ramble about how things have been since I have been off antibiotics and antifungals for over a year now?
I don’t have a whole lot to report or maybe I just don’t know how. I think I am “better”. I am not coughing up thick mucus and I don’t have scabs all over my face and body anymore. I sleep more than six hours a night. I am working and enjoying it. I’m okay.
I feel like Lyme disease, at least for me, is very ambiguous right now. There seem to be several schools of thought amongst both doctors and the general public. I would just go with science but that doesn’t seem like a black and white choice currently.
I continue to read and hear about emerging connections, new testing, personal struggles, failures and triumphs of all things Lyme. I don’t feel like I have a clear triumph and or failure personally. I feel like I am somewhere between healthy and forever in fear. That’s all I got.
Ever since I have been a girl I have had this voice in my head fighting the things that I hear and see as I move through the world. When I was yelled at by men on the street I always wanted to yell back in a much nastier and obviously demeaning way! I wanted to laugh and point right back at the boys for the same things they were laughing and pointing at me for. I wanted to be the quarterback, but I didn’t want to be the quarterback. If you don’t get that last line it’s okay.
My first memories of my teen idol started in my summer school gym class. There was another redhead, gym failure who decided it was important to ask me if I knew about Bikini Kill. I didn’t know about them. She was right, it was important. Thank You Jessica!.
What Bikini Kill was and will always be is a revolution. My heart still flips when I hear “Rebel Girl”. The freedom, the joy and the shared secrets that Bikini Kill opened to my girl mind and my girl heart will live with me for the rest of life. I learned that my power was mine and that’s okay. I yelled back! I suffered for this sometimes but it was worth it!
A few months back I was experiencing a large range of serious symptoms, I was calling off of work because I was having trouble not bleeding randomly while pipetting very expensive antibodies. I was suffering from an illness that had been misidentified as a terrible case of MRSA! On one of my insomnia nights I decided to watch the documentary “The Punk Singer”.
This documentary goes over a brief history of a beautiful butterfly who gets shot down by a chronic bacterial illness and then shows the world her wounds. The brilliant Bikini Kill front woman, Kathleen Hanna, her need to be this person who decided what was happening. Her fear of facing this sickness and the shitstorm it will bring. The vulnerability that had to come with her healing. This warrior was having a hard time. Thank God!! Me too! Damn it do I have chronic Lyme disease?
Months, doctors visits, false negative$ and finally a pcr lyme (whole blood) showed the lyme was in my plasma. I started a blog.
The bottom line is this blog entry is a big thank you to Kathleen Hanna for having the gusto to be Kathleen Hanna. You may have saved my life warrior lady!
There has been some kind of bacteria war zone on my nose, chin and around my ears since this Lyme thing blew up in my face, literally. My neck is occasionally breaking out in rashes that end in a bunch of gold hairs shedding from my skin. I’m not crazy, I’m inclined to believe people when they call me that but my shrink hasn’t let on so I’m gonna call them assholes. They are assholes. Every last one of them!
For about two weeks I couldn’t look out a window. I was pretty sure I was going to at least lose an eyeball because the pain was worse than pushing a child out of my vagina. So I figured get the eyeballs out because this shit hurts soooo much. I got to keep both my eyes and now I do not need my current prescription of glasses. Thankfully, I have had the same eye doctor since I was very young because I was born with a cross eye. Thankfully.
I thought the Masons were after me for a couple weeks. God was speaking to me for two months and if you know me, you know I’m pretty much an Atheist. He spoke to me through Wayne’s World mostly. I drove to Milwaukee. PS. God’s a pervert.
-Kathleen Hannah of Bikini Kill, Le Tigre, Julie Ruin..
The test doesn’t work. The test doesn’t work. The test doesn’t work. Lord help me people! The test doesn’t work!!!! If you have the common co infections that chronic lyme patients have you aren’t going to be producing IGG or IGM antibodies for the Elisa qualifying Western blot that is approved by your insurance (assuming you have it!) Go to Igenex’s website if you want a test that can help chronic lyme patients. “Watch Under Our Skin!” or “The Punk Singer” https://www.imdb.com/title/tt1785612/ Fucking do it!! Please.
My blood under my microscope…
Look at me!!! Help me!!!!!!!!! Learn. I promise you this will end up touching your life like cancer. With or without your help or attention!!!!!
¤ Lyme disease: you may have Borrelia without Bartonella or batonella with borrelia, most often it seems like you have both. I’m not even going to get into Candida right now.
¤ The antibodies you produce due to your infection could be dissimilar to what other populations may be producing due to their genetics and type of spirochete+infection(s) they have. Current standard for testing is for only a couple antibodies some people produce to some infections related to Borrelia.
I don’t know how long I have had Lyme disease. All I know for sure (formal medical documents) is that there is borrelia bacteria in my body! It’s documented. The doctor who asked me if I was bipolar is the one who had to call and tell me!
The worst part about this illness is defending it. Not defeating it.
I spent last summer thinking I was in on some kind of pattern secret code that only special people understood. I told myself not to be cocky about it but God had already confirmed I was right when we were chatting during “Wayne’s World” so I was absolutely certain.
This summer I was terrified because I realized that the three redheads (MC1R homozygous mutants), Thomas Jefferson, Benjamin Franklin and George Washington, had an evil spirochete conspiracy that started in biblical times. This was confirmed for my diseased brain when I read Franklin’s quote “Three can keep a secret, if two of them are dead.”
“THE TRUMPET HAS THE SNAKE!” – Whispers from my Spirochete-al God
PS. I have been typing every blog entry without wearing any prescription contacts or glasses. That is a miracle.
I’m kinda pissed and hate everyone right now. Mostly everyone.
The truth is that my illness is in part due to a spirochete infection that is similar to syphilis. The reality is that I have developed a biofilm in joints of my body that has become a community of bacteria and maybe something else or possibly other things.
The biofilm that chronic lyme patients have and the reason they have so many issues eradicating it is lack of knowledge and understanding.
I have to figure out how to get biofilm out of my jonts that have been exhibiting lots of pain. I guess that would have helped my doctor’s fibromyalgia theory. Too bad it started after I was on my lyme therapy. I didn’t know I was going to exhibit that symptom until I was getting treatment for my actual problem. lol