last part of story....re-visited

 
This is a re-post. Sometimes I need to re-visit where I have been, and what my path has been. I know some people have not looked back at these posts. When I read it I see all kinds of inconsistencies and out of sequence information. Another sign of my Lyme Head. I hope it's getting better as I go along. I wrote this about a year ago, but the events run from decade ago to two years ago. I have 'way more' details I did not share. Enough for a book...


 My story is dragging on and I am truly writing the Reader's Digest Condensed version. I am leaving a ton of details out that I will fill in as I go along.
     To finish up in a summary, I stopped seeing Boston Specialist and went on for a year or two feeling a lot better. I still had pain in my hip joints, some brain fog and of course the relentless fatigue. At some point I began to slip again. Slip into the pain, lethargy, inability to think, tiredness, and a number of other symptoms I could name, if I had my journals in front of me. I have been recording my everyday struggles and doctors experiences for 10 years.
      I couldn't understand why I still felt crappy even after all that treatment. All I can say now, is that the treatment was of a limited type and used limited antibiotics and no herbs, supplements or other body building, cell building therapies. So, my body was still run down, maybe even more so now.
     Around 4 years ago the movie "Under Our Skin" came out. My husband and I went to see a pre-release screening presented in Rockland at the Strand.  Well....I wasn't expecting what I saw. I saw me. I was in that movie all over. All the different doctors (I left that part out so far), all the different diagnosis (ditto), all the 'humoring', all the disbelief, all the fatigue, pain, brain fog, etc. etc., all there, all me. I found my self crying. Not bawling, but the kind of crying where one tear at a time flows. I realized I am not alone. It was the fist time in my life I understood what was really going on and why I was not being treated properly. It was the first time in his life that my husband realized all these vague symptoms were indeed Lyme and they were not going away.
     This started me on the most intense research so far. I studied the disease, the politics, the vaccines, the places of research, doctors different therapies, doctors accepting patients, doctors published reports. I did it all. Good for me I kept it all in a file cabinet.
       As a couple more years went by I began to function poorly again. I was worse than ever, and could hardly do anything without feeling drained (like walk up stairs, do laundry, simple things). I felt different somehow. To be honest, I felt like I was dying. Like little by little this disease was taking my life. It is a very hard feeling to describe, but it was like I knew I was losing the battle. I had lost almost 20 pounds from my usual weight and had no desire to eat. None. All those bacteria in my brain were effecting all areas of my body. I felt like I was being eaten up alive. The cell kill off was faster than the cell regeneration. At least  healthy cell regeneration. That's what Lyme does. It KILLS cells. Hello....I hope patients and doctors understand that. Lyme kills cells.
       I dug around and found another specialist who works out of Washington D.c., when I got in to see him I explained to him how I felt. Like I was dying. His reaction was one I wasn't expecting. He agreed. (Even now I am frustrated again at the misinformation out there about Lyme. People should know Lyme kills cells! It is a deadly disease when left to it's own devices.) Very briefly, I decided to go the IV treatment route. I had IV antibiotics for 8 months. I also went on a gluten free/sugar free diet, and began to take many supplements to build up my cells and grow healthy new cells.
     At this time I am still working with this doctor, who understands the disease in a very intimate manner and he is helping me become healthy again. Time will tell.
     I'm going to call that my story because I am tired of writing about it. I'll get to details as I go along. There are so many other topics I want to get to. So much to get from the file cabinet to the computer! I am on vacation next week, hiding in the mountains of Maine, with my bug spray, hiking hat, and walking stick. This year, I will be able to hike and kayak a whole lot more.