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.
Vitamin D3- 5000Ius
Zonegran-75mg twice daily (focal seizures and headaches)
Topamax- 100mg twice daily
Neurontin- 600mg twice daily
Trileptal-150mg twice daily (focal seizures)
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:
-muscle aches (thighs, back, neck)
-hurts to breathe sometimes
-nerve pain on my right side
-shooting nerve pain in my back
-sound sensitivity ****
-cold hands and feet
-sometimes will get freezing for no reason and cannot warm up my body(random chills)
-very low blood pressure
-numbness in my arms and hands
-out of breath for no reason
-sensitivity to light
-"zoning" out (focal seizures)
-horrible sleep problems