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Freethinker
Posts: 14
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Greets to you all... I <3 your format, you have built a awesome place here. My story is long and you just won't believe how long i had the "little varment" on me...lol...so here is the link. http://www.illinoislyme.com/DontTickMeOff.htm I am currently working on making folks aware of the "standard" testing at the hospitals being bogus and such, where i live...i have become quite the vigilante for Lyme and the other nasties... i go door-to-door with my flyers and i speak where ever and when ever a group will let me. I set up my boards at festivals and have become a fighter for all who are too sick to fight this battle alone. Glad to be here, and i can't wait to meet you all! hugs* Dottie  "Data Over Dogma
Evidence Over Egos
Patients Over Politics."
-Edwin J. Masters |
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Julie4848
Posts: 1367
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HI: Welcome to the board. I just read your story, WOW like mine. Not fun... I live in Illinois also, but north Lake Villa... J Lyme will not win, we will and we WILL… |
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Jenn56
Posts: 258
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Hi and Welcome,My name is Jennifer,i no just what u are going threw,i went threw the same stuff when i first got sick....I have to say that what u are doing is amazing,I also want to start doing some of the same things,i am also one who will be HEARD.I just think if people are aware that maybe we could help people so they wont have 2 go threw what we have all been threw.. I still over one year later am very sick,This disease changes your whole life as u once new it.I never thought Lyme disease could be this bad,I always new of lyme because a very close cousin of mine has been fighting it for over 20 years she is now 28 and a mother of three.The llmd who treated her 20 years ago is also my llmd,if it wasnt 4 this man i would be dead..I just wish that the doctors would not be so fasts on telling us we are crazy and to listen to our symptoms,because everyone i meet or talk to all have the same ones...I dont want ,even not one more person 2 have to go threw what ive been threw to be told something that we already new .I have a very hard time understanding why no one not even doctors seem to no any thing about this Disease...I just dont get it..JENN |
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Freethinker
Posts: 14
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So nice to meet you Julie and Jen. All of our stories are so similar aren't they? But most of all i think they like to tell us is: it's all in our heads. I hear that so much. ACK! Sure it is, the SPIROCHETES!!! i went undiagnosed for 3+ years, found out what was going on this summer. i had such bad head seizures and panic attacks around May/June/July this year. On 400mg oral doxy per day, for 4 months now. i have had several bad herx's a week ago, and i am so stiff...my muscles and joints make me feel like the "Tin man" and it makes it so flippin hard to walk and move around. i don't let all the pain stop me though...i think i am so driven by the CDC and IDSA's "big lies" ... it drives me to madness. Thank you for the warm welcome, hugs Dottie<3 "Data Over Dogma
Evidence Over Egos
Patients Over Politics."
-Edwin J. Masters |
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Jenn56
Posts: 258
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Me 2 with those dam panic attacks,over the summer was hell,i was in the Hosp, at least four times a week,but mine were a little different,i had to have a few arrythmais removed in Sept,it took them over three hours.And im still on heart meds,my heart was racing 2 over 180 beats a min.But the last few days im having problems breathing,i dont understand.My eyes untill thid day have so much trouble with the light,and those dam black floaters wont seem 2 go away,i really hate them.It seems when one thing lets up new or even old ones take over,its so strange.Dont no if i will ever get it..JENN |
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jaime1978
Posts: 1094
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Hi Dottie, you are doing a wonderful thing! Thank you for that. I think people really need to be informed. Even my own family, when I first started treatemnt (I have been sick for 20 years, but just now figured out what it is), and my first herx, had a family reunion to go to, my aunt tells me, in front of everyone "it looks like you're overdosing" I tried to explain to her what was going on, but she just kept saying that. Made me feel like a moron...in front of my whole family. So when I got home, I cried of course, then got all sorts of info together and emailed my family about it. I told them I have over 60 symptoms to deal with, and what it all entails. Now, if I had cancer, they'd all be sympathetic, because that's what we get in my family, cancer. But they know nothing about LD. They are starting to come around more now. I have a big mouth about LD now too. People need to be educated about this. Feel free to read my story, part is in the group leader section, there is more in my profile. Welcome to our humble home  jaime Please do not take anything I say as medical advice. I am not a doctor.
~lyme disease support group leader~
please pm me with any special concerns |
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KendraM
Posts: 44
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Hey Dottie, I applaud you for all you are doing to rasie awareness abput LD. The common element in everyones stroy is the doctors not believing us. If doctors would just listen to the what patients tell them more then what bloodwork says, maybe more people wouldnt have to get so sick. Oh a girl can dream right? I did want to ask what you mean by "head siezures". I have what I think are seizures, but when i described them to one doctor he said it prob wasnt because they are not granmaul. Im glad this team has someone speaking out like you  I am not a doctor. I can only give my opinion.
"Never give up. Never, never give up!. We shall go on to the end." Winston Churchill |
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Freethinker
Posts: 14
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KendraM wrote: Hey Dottie, I did want to ask what you mean by "head siezures". I have what I think are seizures, but when i described them to one doctor he said it prob wasnt because they are not granmaul. Im glad this team has someone speaking out like you The "head siezures" i was talking about were what they were calling "Anxiety"/w panic Attacks. In all reality i was actually feeling this movement in my brain, it would only last for like 3-6 seconds and then i would have the immediate feeling i was going to die. They were actually mini-seizures, or muscle spazums not Anxiety. I have come to learn psychiatrists have lots of "made up words" and Anxiety is one of them! I was having lots of them within a week i had like 15 or more. I believe it's part of dementia. Anxiety-Smankxiety my big bootie. My views on shrinks maybe you don't wanna hear...lol... And tyty for all your kind words! <3 "Data Over Dogma
Evidence Over Egos
Patients Over Politics."
-Edwin J. Masters |
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goldfinch
Posts: 28
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Hi Dottie, This head seizure thread is very interesting to me. I experienced a few of these (possible seizures) but I always chalked it up to anxiety. What normally happens is I expierience an electical shock type sensation (which lasts only a few seconds) in my head followed by nausea. Maybe these head seizures are bringing on the anxiety/panic aftewards because while I am having these epidsodes I am normally out in public and I feel like I am going to pass out. |
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