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.

my story prt. 5

     Disability was a long hard row to hoe, but I did eventually receive it. I hate that I get it, and I am grateful I get it. Hate it because I would rather earn my own money thank you, and grateful, because I know I really can't earn the money. So disability helps,  thank you, even if just a little.
     I was rejected the first time I applied for disability. The second form they give you to fill out is about 20 pages long and asks detailed questions about your ability to function. This worked more to my advantage than not. Things I could not express in the shorter first application were coming up in this application. Then, in a stroke of genius, I decided to send with my application, a research paper from my doctor in Boston. This paper was written describing the bands in the Western Blot test, and what each band number means. Bottom line for me, was that his research showed several bands from the test ONLY show up if you have the spirochete in you. I had two of these bands. In another stroke of kindness from above, the person who reviewed my application and research the second time, was a doctor who actually understood the research paper. This is not an easy task! He approved my disability. Sometimes I wonder, if I may not have been the first person in Maine to be  approved for disability, for Chronic Lyme Disease.
 

prt. 4

     During these years of treatment, there was virtually no immune support for me. I knew to take probiotics and eat well, but supplements were a foreign language to me. Neither doctor I saw, my family physician or my specialist, suggested building my cell strength. Nor did I.
     As the years went on and I worked through the herxing and detoxing on the road to healthy stretches of time. The night sweats stopped. The joint pain lessened probably 90%. The fevers all but went away. I was feeling much better. Even my allergies went away. Weird, but true.
     It was in the second year of this treatment I left work. I had no income but was unable to do the job I was hired to do. As a special Education teacher I was involved in numerous meetings, in depth lesson plans for each individual student, and mounds of paper work. I took two medical leaves during my last two years. Each time I thought I could work, and each time as the months went by I felt worse and worse. I had a window of three hours each day. From 9a.m. to 12 noon I was kind of able to perform my job. Then, like a wand of sparkly stuff falling over me I would become too tired to think or talk. Just like that. I wanted to just sit and stare.  (I used to call it the Sit and Stare Disease)It was hard work to make my body get up, walk, and verbally interact with students or adults. I did the best I could and hid it the best I could. I doubt I fooled anyone.
     It was a good decision health wise to leave. work. The 'disease' had robbed me of stamina and ability to multi-task and keep it all straight. After I left I was able to rest a lot, for a very long time. I could feel my energy even out after all the years of 'pushing through' every day. I was also applying for disability.

prt.3

It wasn't too long before I had and apt. with the specialist in Boston. I agreed when I read a number of his published papers which led me to understand he know the disease at an intimate level. At the cellular level. So began a long road of treatment with him. We made the trip to Boston many times in the five years I worked with him. My first visit was the physical, memory tests, and history. He confirmed my diagnosis of Lyme Disease. I was put on a number of oral antibiotics. I knew enough on my own to take probiotics. The treatment symptoms went through a definite cycle of sorts. Mainly, I could feel pain in my bones and inner spine, etc.. Then it would feel like my muscles were sore. After that, My blood, intestines, heart would feel funny until finally my skin would sweat it out. That is a quick synopsis of what took over five years to kind of figure out. There was another cycle to the treatment as well. I went through definite times of pain and Herxing and other times I felt considerably better. It continued like this: the pain cycles were the longest with only a day or so of good days. The pain days grew less as the good days grew more. I could record and mentally track the progress of my improvement, which was a saving grace. When I felt better longer than I felt worse, I stopped going to him. That treatment, which lasted five years, cleared my body of many spirochetes. I could tell by the way my body was able to move, and how I was able to think and follow conversations. And, very importantly, how little pain I was in compared to when I first started. I stayed on this track of about 75% better, for the next couple of years. Certain symptoms just persisted no matter what, it seemed, so I grew tired and let it go.

rabbit path

 I went for a walk in the woods with my daughter and dog Sat.. It was too hot for tick activity. We thought it would be cooler in the woods but it was not. I was careful to choose a trail that is wide and well kept. Usually Preserves and State Parks are good for trails. Many allow leashed dogs. I do use a ceder oil repellent as well as something on my clothes and hat.  I've done one hike a week for the past three weeks. This is actually an improvement over where I began, when lifting a gallon of milk seemed like an impossible task. Never mind walking a dog and keeping up with my daughter! So all I have done may not have been in vain.

Let's skip prt. 3 for today. I am looking out at pouring rain for the umpteenth day. I see lots of overgrown drainage ditches, meadows, lawns, driveways and pathways, a lot of overgrown everything. And everything is wet. Tick heaven. It's at times like this that 'tick movement' occurs most readily. Ticks like wet, high grasses, bushes and tree branches. When everything is wet, they can travel more easily without a hot, dry break in the path, which stops their movement. Ticks do not like hot, dry environments. Today I can look ouside and see possible ways ticks could make it into my yard and gardens and walkways. I will be extra careful to wear my treated clothes when in those areas until they dry out well. We are promised sunshine and hot temperatures soon. This means lawns can get cut, and many other tick pathways will be broken up again. Keeping your lawn and yard trimmed back, so that wet, debris covered areas are out of reach, is a great way to keep ticks away.

prt.2

    In my twenties I noticed I fell asleep during the day, everyday. I had to fight to stay awake long enough to get somewhere I could nap. This concerned me but it was no red flag. My first bout with serious brain fog was in my senior year of highschool. (before 1982) After a literally 10 hr. hike in the middle of the night. I was tired, and life got fuzzy. I figured everyone else there felt the same. Then, after my wedding, I had brain fog for weeks. Beat out only by the months of it after having my two children. Again, I thought everyone in those circumstances felt that way.  Later, after having both kids, when I was feeling tired all the time, I got the famous "you're the mother of two kids, what do you want?". I believed them. I was having a lot of joint pain by then and was noticing I was finding it hard to keep up with everything. I worked as long as I could, up into my forties. So this was a very difficult time in my life.
    By my mid-thirties, I had been having regular fevers, and soaking night sweats to go along with the fatigue, brain fog, and joint pain. I had an exceptional fever at one point and went to my doctor. Except my doctor was not in that day. The P.A. saw my state and the amount of pain I was in. She ordered a Western Blot Lyme Disease Test. I'd never heard of it. I recieved a phone call from the office asking that I come in immediately and speak with the P.A.. I did, and she confirmed I had Lyme disease. Her concern was the test showed both IGg and IGm positive bands, so she thought I might have had this disease for a long time. After this, my own research began and all the pieces of the puzzle started to fall into place.  This P.A. put me in contact with a doctor in Boston who was a specialist. He was her Lyme doctor too.