I NEED YOUR HELP, PLEASE REPLY

Discussion in 'Lyme Disease Archives' started by HaleyC, Jan 25, 2008.

  1. HaleyC

    HaleyC New Member

    Hello,

    My name is Haley C and i am 23 years old. Right now my life is in ruins. I barely can leave bed, my head feels like it is in a constant fog. Almost two years ago i had to drop out of college and my cognitive skills have been slipping since. My depression is horrible and no doctor or pill seems to help me.

    When i was 7, i contracted lyme and was treated. I've heard of it coming back with chrnoic neurological symptoms. I also contracted mono more than once, and i fit a lot of the Chronic EB symptoms. I NEED HELP! my life feels like it's over at 23. I can't get a diagnoses or a doctor who doesn't give up on me over time or think i'm crazy. I just need a friend or some advice. I live in the Binghamton NY area so if anyone has a recommended doctor, treatment, or any advice please write me here or at haley_colavito@yahoo.com


    Thanks for your time, please help a struggling soul..
  2. victoria

    victoria New Member

    There are various organizations that can help. Here's a few that can:

    http://www.aldf.com/physicianReferral.shtml

    http://flash.lymenet.org/scripts/ultimatebb.cgi
    (here you post on the board listing your area, others will respond via pm)

    www.lymediseaseassociation.org/referral

    ilads.org may also be of help.

    All these places have a lot of info as well. And you could have both chronic Lyme and EBV, as well as other infections....

    Please let us know what happens? We all know here how devastating it is. My son was diagnosed at 17. Good luck.

    All the best,
    Victoria



  3. HaleyC

    HaleyC New Member

    thank you all for helping, it's good to know there are some people that care out there, thank you thank you, Victoria especially, please feel free to keep contacting me with advice i know i will be checking all the sources that you and others gave me, thanks
  4. Renae610

    Renae610 New Member

    I know it's hard. My daughter became ill in 6th grade and she is 20 now. She missed all but one trimester of high school!!! It's been a long road of doctors for us too. But it is always darkest before dawn...and you will have that breakthrough one of these days! Faith will carry you. We got a breakthrough last June from an LLMD....

    But also, you might check with The Green Pharmacy and Renewal Enterprises, both in N.C. They use the Cowden Protocal. Talk to Michelle at R.E.! My daughter likes her!

    Best wishes and I'm believing in faith for your recovery!!!

    ((hugs))
    ~Renae
    [This Message was Edited on 03/06/2008]
  5. wld285

    wld285 New Member

    I e-mailed you, I live near you.
  6. hopeful4

    hopeful4 New Member

    Hi HaleyC,
    I'm sorry that you're feeling so ill. Yes, what you describe sounds like neurolyme.

    I hope that you follow-up on the recommendations that people have given you so far. My advice is to find a very lyme literate doctor who can treat you. Maybe there's a lyme support group in your area as well.

    Also, as best you can, read some of the info available on the web. Or take some books out from the library on lyme. The more you can educate yourself on lyme, the better position you will be in to discuss issues with your doctor.

    You're not alone. Let us know how things progress for you.

    Well wishes,
    Hopeful4
    [This Message was Edited on 01/30/2008]
  7. victoria

    victoria New Member

    is to spend a lot of time reading, about different alternatives etc, as it seems not everyone does well with every protocol. Most people agree to start with the antibiotic (abx) approach if possible, some have said the IV abx made the difference, others have done well with only the orals. Some have not done well with either and have gone on to try other protocols with varying successes.

    Besides reading at the main sites for chronic lyme I listed, here is also a free online newsletter that talks about various approaches, plus their old issues are also available:
    http://publichealthalert.org/

    all the best,
    Victoria

  8. Krista25

    Krista25 New Member

    Haley,
    I love your name! That is my daughter's name. I just want to let you know you are not alone. I am 25 and dealing with this. I became ill at age 19, and had to drop out of college as well. I had a really good time period where I seemed to be okay, and ended up meeting the man of my dreams and had a beautiful daughter. I know that was a blessing because I can't get pregnant now because I am so ill. I feel your pain because I am so young too and I can't believe I am dealing with this. I get tingling in my head and feel spaced out and in a different world most of the time. The best advice I have to you right now is to keep fighting!! It seems like this disease gets worse or maybe seems worse when it feels like there is no hope.
    Hang in there and keep holding on!!
    Best Wishes and lots of love,
    Krista
  9. HaleyC

    HaleyC New Member

    thank you all, i hadn't check the updates for a few days because being i didnt think i would have any new messages. I was overwhemled with all of your kind words, and it makes me want to fight another day.

    Krista25, do you think you could contact me via email? haley_colavito@yahoo.com I miss having friends, i would love to have someone my age to talk to . That goes for anyone who would like to say hello outside the message board


    THANK YOU
  10. momof27

    momof27 New Member


    WALK IN A SWIMMING POOL AS MUCH AS YOU CAN I LIVE FOR SUMMER. I HAVE CFS, FM, WILL KNOW SOON ON THE LYME, KEEP YOURSELF IN CONTROL BE GOOD TO YOU . GOD BLESS YOU SWEETHEART
  11. highcotton

    highcotton New Member

    hang in there, girl!

    welcome to the board. i hope you find help in the resources mentioned by others, above. we understand what you're going through.
  12. ritarhoads

    ritarhoads New Member

    I treat lyme and have 2 adult kids with lyme and they were misdiagnosed for years, then it was 3 hours to a LLMD so....I begain treating lyme. But it has been a long haul for my kids. The son has struggled with college but will finally graduate, premed. But....he is on treatment for 2 years and definitely improving!!

    I have a lot of patients who sound just like you. If you stick with the treatment plan for a long time, and an LLMD who is willing to try many avenues, you should make it! Good luck!