This blog was created to document my journey with Lyme, Bartonella and Babesiosis. I am not your typical 20 year-old college student or should I say almost 21 year old! I have been sick for almost seven years now, but went undiagnosed for over four years allowing the spirochete to entrench deeper into my muscles, joints, and unfortunately my central nervous system. I also have created this blog to help myself remember my current symptoms, protocols, feelings, to help myself ultimately heal.
Currently, I am home from college for the summer! I don't know how I survived this past semester at school with living in a college apartment, taking 16 credits, being 3 hours away from home, and 2 hours away from my doctor. It is very isolating when you have Lyme disease and don't know how to describe how you feel or what is happening to you to other people. Bazaar things would happen to me and I wouldn't know how to or quite frankly want to tell other people at first. How could I begin to explain to people that my vision would go blurry in the library and I would need a ride back to my apartment? That is such an embarassing thing, I felt like I was losing control of my life, which is something I so desperately try to hold on to.
Anyways, my symptoms continued to get worse all through the semester and I could tell they were getting deeper into my nervous system and that oral antibiotics just were not cutting it, so intravenous antibiotics were going to be necessary again. I was nervous that if it hadn't worked the first time why try it a second time, but I had not done the full IV antibiotic protocol that this specific specialist would recommend based on my current symptoms and at this point I am desperate. What do I have to lose? Last summer I had done IV antibiotics for 14 weeks, but it was only rocephin and I did not see a dramatic improvement with it. Plus, the PICC line ended up causing me more problems then benefits. It coiled and had to get removed, then got a blood clot and had to get removed. Needless to say, I am petrified for this summer and getting my PICC line inserted, which is on Wednesday! I am going to be taking two classes for my major, so that I have something to focus on during the day other than being sick, while I go through treatment. I need a distraction to keep me alive, without it I don't know what I would do and that seems to be a weird concept for most.
I also am hoping to spread more awareness with my blog about Lyme disease and about the different "faces" of Lyme disease. Please feel free to comment and share your experiences or ask questions!
My current protocol that I was just on for the past 3 months was:
Omnicef 300mg twice daily on M,W, F (Week 1,2)
Septra 11/2 tab twice daily on M,W, F (Week 1,2)
Mepron 750 ml twice daily M,W, F (Week 1,2)
Artemisinin 800mg twice daily M,W, F (Week 1,2)
Minocin 100mg twice daily every day (Week 1,2)
Tindamax 500mg twice daily Th, F (Week 2)
CoArtem 20/120mg 4 tabs twice daily M,T, W (Week 3)
Then rest of week 3 and week 4 was always off of antibiotics then I would repeat.
Gaba- 750mg
Deplin-15mg
Biotin-5000mcg
MultiVitamin
B12
Fish Oils
Nattozyme
Niacin-500mg
Probiotics
Saccharomyces Boulardii
Vitamin D3- 5000Ius
Magnesium Citrate
5-HTP-200mg
Zonegran-75mg twice daily (focal seizures and headaches)
Topamax- 100mg twice daily
Neurontin- 600mg twice daily
Trileptal-150mg twice daily (focal seizures)
Baclofen
Tramadol HCl
Xanax
Adderall
I knew I took a lot of medications/supplements, but seeing it all listed never ceases to amaze me! I go to my specialist right after I have my PICC inserted on Wednesday so I am sure I will have a completely different protocol then. The doctors said this time I will be on an accelerated IV track this summer because I have already done intravenous antibiotics before so they are not starting with their normal antibiotics; they are throwing the hardcore stuff at me first! Although that scares me I am ready, I am tired of dealing with this day after day, year after year. Plus, I have dedicated all summer to getting better so I would rather be at my sickest now and have a chance of going back to school in the fall compared to being very sick for the rest of my life. This disease is going down!
For those of you that will be reading my blog and either do not know me or are not familiar with the symptoms of Lyme disease and the co-infections that I have here are the ones that I currently have and can remember:
-headaches daily
-muscle aches (thighs, back, neck)
-chest pain
-hurts to breathe sometimes
-hand tremors
-nerve pain on my right side
-shooting nerve pain in my back
-vision issues
-sound sensitivity ****
-concentration problems
-thinning hair
-vivid nightmares
-digestion issues
-muscle twitches
-cold hands and feet
-sometimes will get freezing for no reason and cannot warm up my body(random chills)
-very low blood pressure
-severe anxiety
-panic attacks
-dizziness
-numbness in my arms and hands
-out of breath for no reason
-joint swelling
-sensitivity to light
-"zoning" out (focal seizures)
-horrible sleep problems
-memory loss
You will get through this summer and conquer lymes! I'm always here for support! You can do this!
ReplyDeleteJamie, when you posted on Hannah's blog a few months ago, it meant so much to her to know that someone was out in space hearing her thoughts and feelings about her experience with Lyme. We have also read your blog and are here with you, sharing in your story. You're a wonderful writer. I am so incredibly moved by your story and I hope your writing/sharing and others' response will be a deep source of encouragement and empowerment to get through tough times. Please tell us more when you can! I'm most moved by the title of your blog: how I found an invincible me. A disease like chronic Lyme that causes so much suffering makes one dig deep to find strengths and invincibility that most people never find in their lifetime. You're doing that, digging in deep. We readers will dig in with you, and will cheer in the year and years ahead as you climb out of the darkness like so many Lyme survivors do. You're doing the right thing, pursuing this treatment on the path to wellness. You can do this!!!
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