I am 43 years old (feel about 70) married to a wonderful man and have a 24 year old daughter. I is very difficult to remember my life before LD.

I remember the warm spring morning in 1994 when my journey began. Flu like symtoms and a feeling like a veil had been placed over my eyes. Bedore rhis, I was an active individual who worked full time as a medical secretary in our local hospital, instructed exercise classes/personal trainer at our local YMCA, and was very active in my community. I was the epitome of health, but I could'nt shake this "bug". My PCP reassured me that I was fine. I was sent to an Infectious Disease MD, had many lab tests and a lymph node biopsy. All were negative. Sorta wished something would come up positive so I'd have an explaination.

Although I was diagnosed w/ Chronic Fatigue Syndrome in 1996, I managed to continue working both jobs. I remember coming home some days and crying because I was exhauseted. Feelings of bugs crawling under my skin, severe weight loss, depression, gastrointestinnal and kidney problems, ect, ect ect.

My PCP stared to think it was all psychological. It was in my head, literally!

In May 2000, at the young age of 34, I sufferd a thalmic stroke. After lumbar [unctures, brain scans, and countless vlood tests, Neurologist could not find the reason.

I resumed working part time but was no longer able to instruct my classes (didn't know my left from right, had balance issues, difficulty walking- all the stuff that comes w/ a stroke). We were devistated. My long term disability (LTD) insurance denied my claim and we almost lost everything we own. Thank God for FAMILY!!!

I was part of a LTD lawsuit in 2005. I discovered a positive lyme test when I was compiling my records for reevaluation (I won my claim !) OMG My PCP told me that test was *essentially negitive" in 2000!

Needless to say I fired him and transferred to the doc I have now (he is fantastic). I was referred to a Naturopathy in 2006 and had homeopathic and antibiotic therapy. In October 07, I was forced to resign from my position at the hospital after 20 years due to several LOA's for relapse. That job was my lifeline and I was crushed.

I am still battling the long term affests of this illness. My daughter (who was encouraged by my struggle with illness and is now an MD living out of state) encouraged me to join a support group so here I am.

Just needed to spill my guts.

Thanks,

Sue

I'm sorry you have had to battle as long and hard as you have and your story touches so many of us with it's resemblance to our own.

There are many insightful and caring people here and lots of great information and resources too.

Happy to have you...

Vent all you want that is what we are all here for...

Your story breaks my heart, why doctors won't listen when we talk, is way beyond me. thank god you found those results in your paper work...

Any questions, please ask away...

Julie

I hope that the new bills in the House and Senate on LD won't take a back seat to the economy. This is an incredibly urgent situation. The ramifications of this disease are profound. What would happen to our nations work force if a large majority are stricken with this illness with no cure in sight.... Scary.

Sue

I hope that we will get some resolution for our cause now that the bills in House & Senate have been past.

My dad always ends our conversations w/ "keep the faith kid" and it encourages me to proceed with the struggle.

Here's to a better future!

Thanks again,

Sue

Your story is very similar to mine in a lot of ways. My first bout with this was in 1994, with a severe flu bug. I actually got better, tho, and had 3 good years, then had another relapse, with pain issues involved as well. I've had issues off and on since then, but have had several good years in between. This last year to year and a half have been hell for me. I'm so sorry to hear that you've had such a rough time of it.

I'm glad, tho, that you won your lawsuit. Thank heavens you saw the lyme test, and that your daughter watched such a courageous woman attack this disease head-on! You have fought in a way we all tend to do! We just don't take no for an answer, and we don't believe it's all in our heads. I think that doctors should be ashamed of themselves for even suggesting the idea!!

I'm glad you were referred here, and I hope it can be a source of comfort to you. I'm sorry about your job. I lost mine about 9 months ago, and it's been rough, because this computer is now my connection to the outside world. I'm nearly completely disabled, and some of it may be due to the mental decline I've been suffering.

I can completely sympathize with your situation, so if you need anything, even just a sympathetic ear--or eyes! lol--please feel free to send me a PM. I've also compiled a list of websites that can help you learn more about this disease, so if you're interested, please feel free to send me a PM, and I'll give them to you. I'm here if you need me!

*hugs*

Jen

I read your profile.... our stories are quite similar.

I simply cannot sit by and know that more people will suffer with this crappy illness. Been to my state legislature to advocate for us and, hopefully, we will get some results w/ the new bills that passed the house & senate. Seems like there has been an "old boys club" in the medical community dictating there lame knowledge of the disease and treatment. Change must come!!

I also saw a Rheumatolist for joint pain in March and after touching a few points on my back (NOT even addressing the complaints I had-pain in jointd of feet, hands, & knees) he diag'd me with fibromyalgia. At my FU appt, I told him I disagreed w/ this diag. I insulted his intelligence and he got all defensive. He told me he didn't believe lyme could invade the joints and said there was nothing he could do for me if I disagreed. Some Nerve!!! I fired him right away.

I have found many sites on line - some insightful, some not so.

I'm sick and tired of being sick and tired. The docs like to shove meds at me but no one can address the real issue, you know what I mean?

Sue

No more mope and cope ~ proactive is for me!

If it takes all the strength I have left, I vow to make a difference. Got lots of time on my hands now when I'm not sleeping LOL

Hope you have a good day...hour or minute

sue

I've been sick for 5 years and was told I had fibromyalgia, "Here's some painkillers and an anidepressant..." I KNEW something was wrong. I, too, was tested back in CT, (I was living there when I became ill), and it was "borderline," and Lyme was dismissed. Had my PCP been a little, more "up" on Lyme (and wouldn't you think in CT where this crap originated in the States, that the doc would have been more familiar?), I might not have suffered physically and emotionally (and spent time and money going to various doctors having all kinds of tests),these last 5 years. (Got a new doctor here in FL to re-test me with Igenex. She was angry when she heard about the first test being dismissed. Um, so was I, lol.)

Yeah, it seems most of have had a tough time just getting the diagnosis and proper treatment. I'm in my 4th month of treatment and have had some pretty good days, so I'm optimistic.

Anway, we're all fighting the good fight, together. Hope you will be feeling better soon. - Peggy