Two Steps Forward, Three Steps Back

After four weeks of being on IV Doxycycline, the last medication left I had to try for IV, I still felt no better. My memory betrays me just as it does those around me, and I forget the exact reason why I stopped IV Doxy. I remember a phone call with the nurse at the doctor's office saying it would be best to stop the medicine, maybe from me still not improving? They wanted me to start back on Mepron for the month, and I only remembered to take the yellow paint-like liquid once. In fact for almost an entire month I completely forgot probiotics, Nystatin, B12, and Magnesium which are all important supplements I take to help me get through from day to day. I was told to wait another month and see if just the Clindamycin would do anything, however I knew in my heart that it wouldn't. Why sound so pessimistic? Well, I know I've been on the medication in the past, two separate times. I know that once you do a medication seriously and then stop, the bacteria tends to seem more immune to the substance in the future. Some argue that fact with the idea of pulse therapy where you start the medication for a short bit of time, then stop it long enough for the bacteria to be caught off guard when you restart two weeks later. Pulse therapy is a very common treatment plan used by New York specialist Dr. Horrowitz, I believe, not something that ever worked in my situation. For some people, those more sensitive to medication changes that feel Herx type reactions with treatment, Pulse therapy can be the difference in successful treatment. I have always been difficult to treat, with a poorly absorbing stomach and impossible Lyme symptoms. Very few medications made me feel a possible Herx, and very very few made me feel better. There was a total of two summers I did very well with no rhyme or reason, and I am beginning to think it was more heat and mild weather related than it was medications. Beside all of that, I also know that the second time I tried Clindamycin back in the spring, I felt no effect from it. My main hope in my treatment after leaving my LLMD's office was for the Iv Doxycycline, keeping at the forefront of my mind its effectiveness in treating Lyme and Coinfections like Bartonella and Babesia, both I'm suspected to have. For now I slowly decline until I see my Doctor again, dealing with other issues in my personal life, and trying to survive a more normal life as a student and part time employee.

The Big Picture

Aside from all of the school struggles I have going on with graduation nearing, I have many other setbacks that affect my life. I'm on IV treatment still, with a port in my chest. I get IV medicine (Clindamycin) for 30 minutes twice a day (so much better than the IV drip for 3 hours). I'm also on oral medications for multiple things. I am trying to get a small part time job yet again at Gunstock as a sales rep for the zip line and adventure park this summer, to keep me out and moving and making some gas money. Getting out in small bits is a great way to keep moving, keep positive, meet people, and still build a resume. Lymies have to keep moving! For me, being a social butterfly, meeting people and having friends to help me get out every once in awhile matters enough to lose some sleep occasionally, and push myself to dress up and head out to do something adventurous. Everyone has different things they should be doing to keep themselves positive and hopeful, and for teenagers it tends to be anything that makes us feel normal for a few hours. I am still trying to stay active with horses as well, training an arabian 30 minutes away who was once untouchable. I also stay active in church and I'm working on my guitar skills to be a worship leader in a church someday. Currently I am trying out different churches to find a good baptist church to call 'home' and go to once/twice a week for bible studies and services. All of this must make you question, jee she can't be that sick if she's doing all this? I must say some days I don't know how I do it, where the strength comes from, why I keep pushing. Even though I wake up everyday with pain shooting down my body a thousand times before I even move, radiating through my neck, hips, and legs mainly. Even though I struggle with random headaches throughout the day, sometimes so bad I can't do anything but crawl back into bed and pull the covers over my head. Even though I lose friends because one minute I'm fine, and making plans, and the next I have to let them down and be unreliable because I can't drive or have to do medicine. Even though I push myself sometimes to the point of losing my ability to walk, talk, think, etc. Even though I can't complete schoolwork because sometimes I have the math level of a 5th grader and forget anything I have previously learned in a class. Even though sometimes I suffer from double vision, blurry vision, light sensitivity so I must wear sunglasses even inside or at night and not drive long distances. Even though some days I nearly pass out just standing up, and get so dizzy I have to walk slow with my hand against the wall. Even though sometimes I'm so nauseas that even my favorite food (ice cream) is repulsive and I could go a week without force feeding myself and just let myself wither away (to the point of losing large amounts of weight off my tiny body very quickly). All these things, alone, being things that would push any regular full grown adult out of school with a solid job and family of their own to want to give up, to cancel their plans, forget their dreams, stop pushing for better quality of life. Even through all of those things listed above, and then some, I still push. I don't expect people to understand why, how, when, where, none of the above. I do expect them to understand that everyone has a choice, even the hardest of circumstances we are left being a species full of decision making. My choice is to push, to aim for quality and fullness and not necessarily staying in bed every day all day waiting for treatment that might put the Lyme into remission while my muscles atrophy. I put a smile on my face and have a positive attitude because I have made the choice to be positive in the face of the greatest adversity. I pend nights crying and breaking down with pent up resentment because it is not easy, never was and never will be. However, through all things in my life, I push with the strength I get from God, my past experiences, the people I help on my path to health, and my families love for me. I hope everyone can read this and gain strength from it, keeping in mind they always have a choice and it won't necessarily be easy but it will always be worth it in the end. Nothing simple is worth fighting for, and nothing great is easy. 'The best way out, is always through.'

Took this picture in Upstate, NY. It was heaven on earth, a great escape.