posted
I'm new to this site and I'm excited to talk to people who understand what I'm going through. I'm 22 years old and I was diagnosed with Lyme's about 1 year ago. It went undiagnosed for 12 years. How do you start to take back your life after it has been dominated by a disease for so long?
-------------------- Laura French Posts: 39 | From Bloomington, IN | Registered: Sep 2005
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posted
Hi frenchie! I've been misdiagnosed for 18 years and I just figured it out in May by myself. So, I understand how life is taken from you.
I'm just a bit older than you and these last 2 years have been awful for me...I've had to stop my grad studies to recover. Boyfriends?? I can't even think of making another person suffer with whatever stuff I'm going through. Maybe I'll gather the courage if/when I feel a bit better...?
From what I gather, we just have to keep doing treatment to kill these germs before they kill us. See your doc. Make necessary changes until you feel better.
One day, hopefully life gets back closer to the way we left it.
-------------------- Be well, SAK Posts: 371 | From Up North | Registered: May 2005
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All I can tell you is to find a good LLMD and go from there. I've had Lyme since I was 8 and I'm 54. I found out 5 yrs ago that I had LYME not Fibromyalgia.
With the help of a great LLMD, I'm doing very well now. So it CAN be done!!
Glad you found this site!!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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What is an LLMD? I know what you mean about boyfriends. I don't want this to effect anyone else. I can't bear to watch the damage it has already done to my family. I"m being treated with antibiotics right now. What kind of treatments have you all been on?
-------------------- Laura French Posts: 39 | From Bloomington, IN | Registered: Sep 2005
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I'm taking antibiotic IV clindamycin (900mg) 2x/week and Ketek 800mg for about 4 weeks now.
An LLMD is an acronym that stands for Lyme Literate Medical Doctor. So, a dr that knows about lyme and has treated many is the way to go. I just saw one about four weeks ago. They have long waiting lists.
Thanks Lymetoo. You give us longer-time sufferers hope!
-------------------- Be well, SAK Posts: 371 | From Up North | Registered: May 2005
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How long have some of you had to wait to get an appt. with an LLMD?
-------------------- Laura French Posts: 39 | From Bloomington, IN | Registered: Sep 2005
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livinlyme
Frequent Contributor (1K+ posts)
Member # 3773
posted
That will all depend on who you find to go..
I have had to wait 6 months, but most often it was only a few weeks..
-------------------- "Hatred paralyzes life; love releases it. Hatred confuses life; love harmonizes it. Hatred darkens life; love illuminates it." Posts: 1389 | From who knows, who cares, but somewhere over the rainbow | Registered: Mar 2003
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Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
Laura,
There is no easy answer to your question about how you take your life back. I was 28 when I was diagnosed. I had been undiagnosed for 16 years.
Because I had Lyme for so long, my life as I knew it was with many of the restrictions of Lyme. But the last two years were the ones that became debilitating, because I was in constant pain.
The way I took my life back was picking one thing I really wanted, and going after it. For me, that was law school. I've slowly added things back in that I really want, big and small.
But I also remember to take the time to rest. I'd rather be out with my friends and not have the energy to clean the next day rather than have a perfect apartment.
This site has also been tremendous. It gives me a boost when I need it.
-Aniek
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
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