Joined: Sun Feb 17, 2008 9:42 pm Posts: 2809 Location: USA
I've been dealing with lyme disease nearly my whole life. Undiagnosed for 20 years! Been infected since I was 9 years old. I'm now 29, and the past 10 years I have steadily gone downhill. My husband and I always kept researching for answers, when he came up with lyme disease.
It's because of sites like this that we were able to finally get this figured out. I'm now in treatment and will be happy for even a 40% improvement. I used to be very active in the community, raising money for people with cancer, planning benefit dinners, delivering meals on wheels, but since my health gives me limitations, I can no longer be as active as I would like in such things. So this is how I reach out now.
Lyme disease is so underdiagnosed and misdiagnosed, I feel the need to reach out to people who are suffering like I am and have. If I can make this journey easier for even one person I will have succeded
I am a stay at home mom of two toddlers. Was diagnosed with fibromyalgia and MCTD (lupus, RA, scleroderma) , but no ana factor....3 years ago.
Been doing research and strongly believe I have lyme disease. when I was 9 I had two ticks burrowed into my skin. Since then I have had a miriad of symptoms.
Just really trying to get this figured out. Out of a list of 35 symptoms for lyme, there are only a few I haven't had.
Breif background on me. I am now 29 years old. When I was 9 I was in texas with my dad, and they saw I had 2 ticks on my back, they burned them off with a match or ciggarette or someting (worse thing you can do, they regurgitate into you) I had strange things happen as I was growing up, but blew it off as well, growing up. A week before my 21st birthday I had just met my husband to be and fell VERY ill. No doc or emergency room could give me an answer, best I got was "mutated epstein barr virus" My bed was soaked I was sweating so bad, throat was so sore could't swallow, had to swallow lidocane , lived on popsicles for a week. I believe it was the Babs comig out in full force. Through the next few years started having aches and pains, and different symptoms. no sex drive at 22 (a nightmare for hubby, lol) Then I got pregnant with my first child. I felt like death. I wanted to die. It was miserable. I ended up getting a rash on my face, of course the clueless docs didn't know again, they said I had poison ivy!!!! Then pregnant with second child, same thing, same rash, was then told poison ivy aggain. twice, same time??? huh? I also started getting horrible headaches with baby number 2. So bad I had to take fioricet just to function and take care of my other little one. After having the kids, my right knee swelled up 4 times it's size, doc said get to the ER afraid of a blood clot. Of course it was nothing...he said i was out of shape...I weighed 120 pounds...was in better shape than most. I had always been very active. When we moved I found a new doc who dx me with fibromyalgia, lupus, RA and scleroderma and has been treating me for that. But yet I still kept getting worse. I had no posiitive blood tests for any of these. So hubby and I never stopped researching. My doc was great at first , humoring me when I'd ask about this test or that, he'd run it. Then hubby found lyme online. We knew right then that's what it is. My doc laughed. So I started the search for a lyme doc. There aren't any in ohio, at least not the good ones, so we travel to PA every month. It's been a nightmare. I can't even tell you how many pills I have to take. I dont even know. I still have to see my regular doc who is still treating me for fibro and MCTD because I need the pain meds, my lyme doc doesn't or can't prescribe them. I usually run out, as do most of us in chronic pain becuase pain managment is a joke in this country. CA has made some great headway and I'm wondering if my friends doc will help me over the phone and send me scripts in the mail. doubt it. I'm not going to list all my symptoms, there are just too many. Before all this started I was miss "all natural", I am a licensed massage therapist and can't even work....the pain meds make it so I can try to do some normal mom things with my kids. It reminds me of when Montel had on Duff (the old mtv dj), she has sarcodosis, and was on major amounts of morphine, and he said, "you can sit here just like a normal person becuase of these meds, it's the jerks out there who abuse them that give it a stigma"...so true. Unfortunatly I will never be fully recovered, I had 12 shots of cortisone in my spine in march before driving down to florida, it nearly killed me....steroids with lyme is a big no no...but I didn't know I had it at the time. There are days I lay on my floor and beg God to end it all one way or another. BUT I lost my dad to suicide when i was only 9 and my kids are my world, I would never leave them, yes have the fleeting thoughts, but never could do it. I think all lymies have these thoughts it's normal. it's because ofmy kids I get up and keep fighting every day.
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