Tuesday, 25 February 2014 01:00

Gale; my first tick bite was at age 13

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Hi, Im Gale. I have no idea when I was infected with Lyme. I do know that my first tick bite was at age 13 or so and I got it in Massachusetts.

As a young adult in College I started coming down with sleep disturbances and muscle pain. My arms and legs specifically felt as though Id been working them to a burn but most of the time I wasnt doing anything except holding a blanket up or walkin up a small flight of stairs.

In my family pain was ignored to get the job done so I ignored my increasing symptoms and only occasionally wondered what was going on. Once in a while over the years I would attempt to research various auto immune diseases which ran in my family and try to pinpoint what was happening to my body but most of the time it was business as usual. In 1994 I was dx unexpectedly with Fibromialgia. I tried various holistic things in an attempt to help myself with this largely ignored condition by the Drs. Most didnt work. I began a lifestyle of what I call conservation. I would conserve my energy and use of my body so that I could more readily function for an up coming event or job or what have you. Then after I would go back into conservation mode.

I suffered a horrible car accident which only increased symptoms and confused the issue with other legitimate non lyme issues. During this time I watched as a family member was bitten by a tick, found the bulls eye, and subsequently spent years trying to get Drs to treat her until she finally got lucky enough to be treated by the Dr who actually discovered Lyme! This was likely my downfall though I didnt realize it at the time.

I was also during this time misdiagnosed with lukemia, sent to Boston for extensive pokes, prods, n lit up like a glow worm so many times that If I didnt have cancer I prob will just from that. They told me I had so many bone lesions that I could never have a true pep scan for cancer because I did already glow just in a diff way. They also told me I would be having hip replacement surgery and shoulder replacement surgery before age 45 due to all the dead and dying bone in the joints but I did not have any kind of arthritis they could pinpoint.

They did not however ever really dx me with anything. I had antibodies for Lyme and for Scleroderma but they ignored them saying they were too low to be the cause of my condition.

After a year they gave up and told me I had to travel to more specialists further into Bostons medical community to be Dx because they just couldnt nail anything down though they found lots wrong. I told them I was from lil ole Maine and they WERE Boston to me. I gave up. I went on living in pain daily. I self medicated too during all this with alchohol. It "lubricated" my muscles and joints so I could move pain and stiffness free..though that too turned out to be a very bad idea.

Meanwhile the family member who had lyme and was being treated was going through hell. She was so sick with a myriad of things she was hospitalized for her heart, for sinus infections so bad she was on morphine in the hospital and lookin at surgery for it, she couldnt live alone, fix meals, take baths without help, fell twice and got concussions from fainting, and her mood swings were so volatile everyone wanted to commit her more than they did before she was dx!

Four years ago I was tested again by a new doc after I moved to north eastern Maine. He wanted me off my pain pills which thankfully I am not addicted to and wanted me to begin treatment for lyme. The mere though of treatment and going through what that family member did scared the hell out of me. I was also still drinking. I knew I couldnt handle the treatment and the alcohol but it was hard to give up the drink after 26 years. I started my doxy, its the only drug I can tollerate for the lyme apparently, and became sick with a champylobactor infection so bad I was hospitalized and sick for months in exactly the predicament I didnt want to be in,.

I couldnt run my farm alone, I was so weak I couldnt get dressed or stay out of bed. It was bad. I couldnt eat. I experienced clinical protein deficiency and muscle wasting. Hell of a way to lose weight I dont recommend it. I am better now but...Im scared to go ahead with the lyme treatment and put myself back in that situation. The docs said I got the champylobactor infection because the first round of doxy ripened my system for it. They are backtracking that now making me feel like im a lil bit touched for clearly remembering them stating that.

I feel like I cant trust them when Im going to be at my most vulnerable. Ive tried twice since that illness to start the meds for lyme. Both times I started to feel overwhelmingly sick and stopped them. I read all these stories of people who CANT get treatment....I feel a responsibility to do the treatment as I am one of the lucky ones to receive it all be it 30 years into my illness. I am not as sick as some even for having it for so long and so I find myself justifying not doing the treatment based on that but then again I find a story of someone who died, someone who cant have the treatment and again I feel as though Im not only letting myself down but all of them as well.

This mental viscous cycle is as hellish as the monthly cycle of lyme I go through. At least I suppose that is what it is. Im trying again. I just dug out my meds and Im trying again. Im scared to death but Im gonna try and this time instead of stopping them when I get sick and depressed about not being able to run the farm alone I will come here or go there and blurt out my misery and find a shoulder to cry on. I have a fear of being a winy baby and burden to others that was as well but I will try harder because Im one of the lucky ones. If this wasnt supposed to be posted here please feel free to relocate it ..I didnt know what you meant about posting stories to "the blog"
Thanks

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