posted
Hey everyone.. It has been a while since I've been here but I wanted to give hope to all of you who are still suffering from lyme disease.
Well.. I am 22 years old now and In remission for going on 3 years. I got bit by a tick when I was 16 years old.. my parents and I didn't know anything about lyme disease when we found the tick. I never got a bulls eye rash.. no symptoms at all. Then two years later when A lot of stress was put on my body from a miscarriage my symptoms came on full force. It first started out with panic attacks, then it progressed into not being able to eat, drive, go out to public places because I was so sick. I had numbness, tingling and extreme heaviness of my arms and legs.. It kinda felt like I was going paralized. I had a hard time breathing.. this is the way I explain it.. It felt like something was taking my gravity away. It was so horrible. My general doctor could not figure out what was going on with me.
She sent me to all the specialists.. you name one and I've been to one. Every test was negative at every specialist. One day I got lucky, I was picking up my blood work from the neurology place I went to for a Thyroid doctor I can't remember the name for them. My mom was looking through the bloodwork.. shes a nurse and she sees that my lyme disease test was positive. I never got a call from that office telling me I had a positive lyme disease test.. nor did I know I got tested for lyme. So I called my doctor up right away and she told me to fax the results to her when I got home, so thats what I did.
I was so excited that they may have found what was going on with me until I got a call back from my doctor. She consulted with an infectious disease doctor in the area about my results and that doctor told her not to treat me due to me only having 2 reactive bands on my western blot and I needed 3 reactive bands to be considered "positive". I was so upset because I was so sick and tired of being sick and tired.. and I thought my prayers had been answered. My GP refused to treat me even though my mom gave her consent to expose me to a month of antibiotic's just to see if I'd get better or not. Man do I hate that quack.
After that I continued to go to specialists with no answers.. everyone thought I was nuts. Looking back on it now, I don't understand how they could think I was crazy when I was 106 pounds soaking wet and I couldn't gain a pound at all. (my height is 5'5) So.. One day while I was trying to live a normal life, I was at work and I almost fainted. I left work early.. called my mom up and said that if she didn't bring me to an emergency room outside of our area...(being that the local one thought I was crazy too since I visited the E.R. a couple times a week because I thought I was dying) I would commit suicide because I couldn't live like I was living anymore.. Being so sick and not having a diagnosis.
So my mother brought me to a hospital an hour away, a very good hospital at that. The E.R. doctor did not like the way I looked.. He ran blood tests on me.. and like every other doctor he thought it was an over active thyroid, so he tested that. I had told him that I came up positive for lyme disease and he tested me.. since my blood work was normal he sent me home WITH antibiotics and told me that the lyme disease test results wouldn't be back for a couple of days and that they'd call me if I was positive.
Well.. I got that call.. I was so happy, I started crying on the phone with the doctor and thanked him and said "I knew I wasn't crazy all along" So my mother and I then searched for a lyme disease specialist.. I found one about an hour away from me. I got a PICC Line and began my treatment on rocephin and oral zithromax.. I was treated for 90 days on that. I was Ok for a couple of months and then I relapsed.. The doctor then put me onto the PICC again and I was treated with IV Vancomycin and Rocephin at the same time...That treatment lasted 60 days.
Since then I have been in remission. If it wasn't for that lyme disease specialist I probably would not be alive today. While I was sick I never saw the light at the end of the tunnel.. I thought I'd never get better.. but I did.
I still have some symptoms of lyme disease as in CFS (Chronic fatigue syndrome) I still have difficulty with my memory but not as bad, and math with number reversal and anxiety still but I take medication for the anxiety. I do have a very very low immune system but thats a small price to pay for all that I went through.. I'd rather get colds more often then others rather then be sick with lyme disease.
I am working a full time job now, I am getting my life back in order. I plan to go to college soon.. Since I had to drop out while I was sick. There is hope.. I NEVER thought I'd pull through it and I did. I always keep the thought of relapsing in the back of my mind but I know theres nothing I can do about it if I do relapse and I know who to go to. I get tested for lyme every now and then just to make sure Im still showing up negative.
I just felt the need to give all of you that are suffering some hope.. I hope I helped someone see that there is a light at the end of that very dark tunnel. I will continue to post on here from now on because I know that when I was sick I never saw anyone in here who had been a success story.. only war stories.. no offence guys but I know that a lot of people who are in remission do not come to help those that are still suffering. So I will be talking with you guys soon.
<3 Koryn
-------------------- ~*In remission for 3 years!! There is a light at the end of the tunnel, just keep holding on!*~ Koryn Posts: 8 | From Poke-A-Nose, PA | Registered: Nov 2007
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Vermont_Lymie
Frequent Contributor (1K+ posts)
Member # 9780
posted
Thanks Koryn for sharing! it is great to hear your success story, and my best wishes for your continued health.
Are you still seeing a llmd regularly? Do you take maintenance abx?
Posts: 2557 | From home | Registered: Aug 2006
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
YAY Koryn- VERY glad to read it*)!!!!!!!!!!!!!!! *)!*)!*!)*!)!
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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tdtid
Frequent Contributor (1K+ posts)
Member # 10276
posted
Koryn,
Thank you so much for taking the time to share your story. So many of us have felt the despair or still feeling it and it's always good to read that someone has gotten out of this horrid hole.
I do hope the new year finds you healthy and that you remain on a positive course. Thank you for sharing.
Cathy
-------------------- "To Dream The Impossible Dream" Man of La Mancha Posts: 2638 | From New Hampshire | Registered: Oct 2006
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RoadRunner
Frequent Contributor (1K+ posts)
Member # 380
posted
you wrote I still have some symptoms of lyme disease as in CFS (Chronic fatigue syndrome) I still have difficulty with my memory but not as bad, and math with number reversal and anxiety still but I take medication for the anxiety. I do have a very very low immune system but thats a small price to pay for all that I went through.. I'd rather get colds more often then others rather then be sick with lyme disease.
Sounds to me that lyme is still in you but if you are better and like living like this that is great. If you have symptoms you are still sick and I would look for more treatment you should have no symptoms.
I wish you the best
RR
-------------------- "Beep Beep" Posts: 2630 | From ct | Registered: Nov 2000
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Eventually this thread will fall backward in the pages and be lost forever. The Success story thread at the top of General Support stays there for the encouragement of others who are desperate for help.
Could you copy this into that thread?? I know it will give encouragement to many others.
If you need help with it, someone could post it there for you....just ask and it'll be done
Vermont.. no I havent seen my LLMD since my last treatment and I'm not on a mait. dose of abx. I kinda wish I was but yet I also think my immune system would laugh at oral abx being that I was on IV abx.
roadrunner... I do see where your coming from, I am getting another test done soon so i'll see i guess.
Meg... I will deff. post it on that website for you
Thank you all for wishing me well, I also wish everyone else well too..
-------------------- ~*In remission for 3 years!! There is a light at the end of the tunnel, just keep holding on!*~ Koryn Posts: 8 | From Poke-A-Nose, PA | Registered: Nov 2007
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posted
Yes I do need someone to put my story on the success stories forum for me.. I tried but I dont know how to lol.
-------------------- ~*In remission for 3 years!! There is a light at the end of the tunnel, just keep holding on!*~ Koryn Posts: 8 | From Poke-A-Nose, PA | Registered: Nov 2007
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