MISDIAGNOSED AS CFS FOR 7 YEARS/BUT LYME DISEASE

Discussion in 'Fibromyalgia Main Forum' started by JAREDKIRI, Mar 27, 2003.

  1. JAREDKIRI

    JAREDKIRI New Member

    I WAS MISDIAGNOSED FOR 7 YEARS WITH CFS AND FIBRO. TURNS OUT I HAVE CHRONIC LATE STAGE LYME DISEASE WITH A PARASITIC INFECTION ALSO.

    I ALMOST DIED. DOES ANYONE ELSE HAVE THIS PROBLEM?

    ALSO, ANYONE HAVE SMALL CHILDREN AND HAVE A HARD TIME TAKING CARE OF THEM BEING SO SICK.

    THANK YOU,

    BRENDA
  2. Mikie

    Mikie Moderator

    Welcome to our board. I am so sorry for your misdiagnosis. We have at least one other member who was misdiagnosed. My doc tested me for this to eliminate the possibility.

    My kids are grown. Geez, they were a handful before I got sick. I really feel for all the parents of young children who suffer chronic illness. Take care.

    Love, Mikie
  3. sofy

    sofy New Member

    What led them to the conclusion it was late stage lyme? I have been treated for lyme 3 times and early this year had a lumbar puncture to be sure it wasnt lyme lingering on. The infectious dis. dr said the spinal fluid was clear and showed no signs of lyme, the end. He did say I could still "could" be suffering from lingering effects from an old case but I doubt it cuz that was treated right away and felt fine for a long time after finding the bulls eye tick bite.
  4. bejo

    bejo New Member

    I've never been tested for Lyme Disease.I've read a lot about it though and have sometimes wondered about it.Thankfully my children are grown.Raising kids is hard enough when you feel good,I'd hate to have to do it the way I feel now. bejo
  5. JAREDKIRI

    JAREDKIRI New Member

    THE RIGHT TESTING IS IMPERATIVE.

    I WAS TEST FOR LYME FOR 7 YEARS AND ALWAYS CAME UP NEGATIVE.

    I WAS FINALLY RECOMMENDED TO A SPECIFIC LAB BY A CHIROPRACTOR WHO SAVED MY LIFE. I WOULD HAVE DIED WITHIN TWO YEARS, BY LAST SUMMER.

    THE LABS THAT DO LYME TESTING THAT CAN BE TRUSTED ARE AS FOLLOWS:

    IGENEX, PALO ALTO, CA WWW.IGENEX.COM

    MDL, MT LAUREL, NJ WWW.MDLAB.COM


    IN MY EXPERIENCE, THESE ARE THE ONLY LABS THAT CAN CORRECTLY DIAGNOSE LYME IN PEOPLE THAT HAVE SYMPTOMS AND HAVE TESTED NEGATIVE.

    I ALSO HAVE A VERY GOOD LYME DOCTOR IN NORTHERN NJ WHO ALSO DEALS WITH OTHER CHRONIC ILLNESSES TO. AFTER ABOUT 50 DOCTORS, I FINALLY FOUND TWO WHO CARE ABOUT ME AND WHAT I AM GOING THROUGH.

    BRENDA
  6. Debgene56

    Debgene56 New Member

    First I am so happy that you have finally been diagnoised. What a relief that must be to you. But your post has also left me confused.

    I live in MA in a heavily wooded 10 acres of land. I have been bitten many times. Last laborday weekend, I got a bullseyerash on my neck. The doc said it was by a lyme tick. I have had three Lyme (IgG/IgM) Ab test's done. They are all negative. I have Fm and I believe Cfs. I have felt so much worse for many months now. The pain and the fatigue puts me down. I have a appt. with a new doc this week and I want to address this. What do you know about testing? Is this test I had three times no good, or is it the labs that are no good. What is it that the chiro told you? How had you been feeling? Could you please share with me anything that might be helpful? I would be so grateful for any infor, thanks so much. Again glad things are looking up for you. My youngest kids are 12 and 14. I don't think it gets much easier as they get older. Mine can be just as time consuming now as they were at 3 and 4. They get bigger, but so do the problems. If I could go back, I would teach them to fend for themselves more and be more consistent with discipline. Good luck to you and the little ones. Love, Deb
  7. jstbrznby

    jstbrznby New Member

    She is an incredible person but this ruined her active lifestyle. She trained and showed horses, always had a student she was going down the road with and when she was hit with Lymes she lost it all, the horses, the business, and all her clients. She is allergic to all the medications so I really worry about her, all she takes is advil. She has the Lymes under control at the moment but it raises its ugly head periodacly. Anyway this is a very serious disease and not to be played with so I am glad you are getting treatment!

    Good Luck and warm HUGS.......Pam
  8. JAREDKIRI

    JAREDKIRI New Member

    THE ONLY TWO REPUTABLE LYME LABS THAT I HAVE FOUND TO HELP ME ARE:

    IGENEX WWW.IGENEX.COM

    AND

    MDL WWW.MDLAB.COM

    MY LYME DOCTOR IS DR. UYCHICH IN ELMWOOD PARK, NJ

    201-796-0866.

    I HOPE THIS HELPS. I BELIEVE THAT ALL CHRONICALLY ILL PATIENTS THAT ARE NOT GETTING BETTER SHOULD GET TESTED FROM ONE OR BOTH OF THE ABOVE LABS.

    BRENDA
  9. kerrymygirl

    kerrymygirl New Member

    I too was misdiagnosed for 10yrs. I beieve I am in a flare right now. They are right about the labs. Usually you have to pay out of pocket depending on ins. I do not have anyone on my plan who treats but have worked with a lyme specialist here who dedicates her life to how poorly this growing problem has been handled. I was treated once on doxy but bactirium,which there are 3 of, hide deeply in tissue and our standard tests are not reliable only these labs do complete tests. It `s treatment is very controvercial as I have stated before. Many relapse after long periods of antibiotics. It is a toughy. I have no help for it right now and am suffering. I have alot of info & research. Lyme-net may beable to help you. Take Care,let me know how you are doing? Hugsss, I also have fm/cfids I believe after no treatment for so long and breakdown of immune system.
  10. IngaDinga

    IngaDinga New Member

    All of my blood and urine tests were negative for lyme through the years. A hematologist ordered a bone marrow biopsy to rule out Leukemia as I was so incredibly sick. They found Lyme DNA and HHV6 in my bone marrow.
  11. JAREDKIRI

    JAREDKIRI New Member

    HAVE YOU BEEN TREATED?

    MAYBE I CAN HELP STEERE YOU IN THE RIGHT DIRECTION.

    YOU NEED A GOOD LYME DOCTOR AND THE RIGHT TESTS.

    LOVE

    BRENDA
  12. JAREDKIRI

    JAREDKIRI New Member

    HAS ANYONE HEARD OF THE NANOBACTERIA?

    I WAS JUST DIAGNOSED WIT THIS BACTERIAL INFECTION THROUGH BLOOD DNA OVER THE WEEKEND.

    SOUNDS LIKE SOMETHING FROM OUTERSPACE.

    THE DR. PUT ME ON ANTIBIOTICS.

    HELP..


    BRENDA
  13. IngaDinga

    IngaDinga New Member

    I am going into my third week of IV Rocephin. I see Dr Burrascano.
  14. Debgene56

    Debgene56 New Member

    When I showed my doc the rash, he gave me iv fluids because I was dehydrated and not feeling well. He did the standard test and forgot about it. I have just recently asked for a third test. All negative. I have been what I would of called a major flare for many months now, thinking it was just fm. I have been dehydrated several times which is new for me. I am going to ask my new doc this week about the DNA/PCR test. Are there other ones that I should look into to? I live closeby to Old Sturbridge village. Inbetween Springfield and worcester. Love, Deb
  15. Debgene56

    Debgene56 New Member

    I am going to check out your old post. Could you please tell me how to get to the discussion board on lyme. Thanks.Love, Deb
  16. JAREDKIRI

    JAREDKIRI New Member

    DEB,

    YOU NEED TO BE TESTED BY THESE LABS IF YOU WANT AN ACCURATE DIAGNOSIS.

    IGENEX WWW.IGENEX.COM

    OR

    MDL WWW.MDLAB.COM

    NO OTHER LABS WILL DO, ESPECIALLY FOR THE CHRONICALLY ILL PERSON. YOU CAN ORDER A KIT FROM IGENEX WITHOUT A DOCTORS PRESCRIPTION. YOU CAN GET THE LYME DOT BLOT ASSAY DONE AND A HOST OF OTHER TESTS. YOU CAN CALL THE 1800 NUMBER AND SPEAK TO A DOCTOR OR NURSE.

    DO IT, IT IS WORTH IT.


    BRENDA
  17. JAREDKIRI

    JAREDKIRI New Member

    IF YOU HAVE ANY DOUBT AT ALL THAT YOUR ILLNESS COULD BE LYME, PLEASE READ THE ABOVE POST TO DEB AND BE PROACTIVE. GET THE TEST DONE.

    YOU WILL NEVER GET BETTER IF YOU HAVE UNDETECTED LYME DISEASE.

    IF YOU HAVE LYME, DON'T WASTE YOUR TIME GOING TO INFECTIOUS DISEASE DOCTORS.

    GO TO WEBSITES RELATED TO LYME LIKE LYMENET.ORG AND FIND DOCTORS YOU CAN TRUST.

    TAKE CARE,

    BRENDA
  18. TerriM

    TerriM New Member

    I have had two other negative Lyme Titers, but now am being tested by MDLab in NJ for Lyme PCR . . . hopefully this is the test they did where you found out the correct results! All my best . . . Terri
  19. JAREDKIRI

    JAREDKIRI New Member

    HI TERRI AND DAVE,

    I AM ANSWERING YOU BOTH AT ONCE HERE BECAUSE I HAVE TO GO GET MY LITTLE ONE FROM SCHOOL SOON.

    TERRI,

    YES MDL IN NJ IS THE CORRECT LAB. YOU ARE ON THE RIGHT TRACK.

    DAVE,

    MY NAME IS BRENDA S. SHE WILL KNOW WHO I AM. I SEE HER EVERY TWO WEEKS. FEEL FREE TO MENTION MY NAME!

    SEE YA LATER,

    BRENDA
  20. Kay2

    Kay2 New Member

    What is the phone#? How much does it cost, an does some one draw your blood and then we send it? Thanks

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