Positive Lyme test

Discussion in 'Lyme Disease Archives' started by mollystwin, Feb 19, 2007.

  1. mollystwin

    mollystwin New Member

    I just got my test results and I am positive for Lyme. I called on the phone to get them because I was so anxious to know.

    I have a doctor appointment on Thursday morning and will know much more at that time. I'm glad I know ahead of time so that I can get my questions in order.

    I guess I'll be spending more time on this board from now on!!!
  2. jbennett2

    jbennett2 New Member

    Sorry to hear you have Lyme. Although it is a relief to actually have a diagnosis, isn't it?

    My husband, daughter and I all have Lyme and it is a constant struggle.

    Another good resource, if you haven't discovered it yet, is Lymenet.

    Any questions you have, feel free to ask.
  3. jarjar

    jarjar New Member

    Its so good you finally got a diagnosis as to what has been keeping you so ill.

    Please inform others on the Fm/cfs board of your new diagnosis. The majority of cfs/fm patients have lyme and don't realize it.

    J
  4. connieaag

    connieaag New Member

    Glad you had the test done. What were your numbers as I would like to compare them to Kathyrn's in what iGenex considered positive versus her negative results from them.

    BTW -- We decided to treat her with ABx since Dr.C's office said they would do it with any positives in the panels, and she had 3 in one and 5 in the other. She is taking 500mg of tetracycline 3x a day for 4 weeks to start. We go to the doctor today, but we have seen improvement in her! Dr. C indicates an improvemnet in 97% of patients who test CDC and IGenex negative like her with the Tetracycline, so we felt it was worth a try.

    Keep me posted as to what your doctor says if you don't mind. Thanks & Best wishes! Connie

  5. mollystwin

    mollystwin New Member

    I really need the support!

    Jbennett2 my twin sis has lyme too so I know about the lymenet. I am sorry that your hubby and daughter have this too!

    JarJar- I have already posted this on the CFS/FM board. I think you are correct that many have it but don't realize it. It's so sad. I wasted a year and over $12,000 on treatments that helped little but only temporarily. And many years before that wondering what the heck was wrong with me.

    Connie-I don't have my copy of my results yet. I have my appointment Thursday but I just could not wait until then to find out so I called and they told me over the phone that I was positive. I will post my results when I get them. I am happy that the tetricycline is working for your daughter! Finally something that works!
  6. dahopper

    dahopper New Member

    And Praying for you !! We leave tommorow for Dallas will be back late Thursday. I will be waiting to see what you post about your Thursday Appt. Good Luck. Hugs, Debbie
  7. mollystwin

    mollystwin New Member

    Thank you so much for your support!!! It means a lot to me.

    And thanks for the prayers. I believe in prayer![This Message was Edited on 02/20/2007]
  8. mollystwin

    mollystwin New Member

    I saw my dr today and here are my IGM results:

    30 +
    31 ++
    39 IND
    41 +
    66 +
    83-93 IND

    Igenex positive
    CDC negative

    My CD57 was only a 6 which I guess isn't as bad as some of his patients, but not real good either. It needs to be 15 or higher. Some of his patients are only 2's, so I guess this isn't too bad.

    He is starting me on Doxy initially then will switch for summer due to the sunburn issues with doxy.[This Message was Edited on 02/22/2007]
  9. mollystwin

    mollystwin New Member

    I don't know what those numbers mean. I looked at my igenex forms and didn't see either of those numbers. The igenex tests are for IGM and IGG but so are the quest tests.

    Do you have a copy of your results? If you don't you should get them. If you do it should tell you if they were from Quest or Igenex which is the two places FFC gets them from. The Ignenex are are more sensitive and are considered more accurate due to less false negatives.

    Band 41 is a double starred band which means it is one of the significant ones for lyme. Many doctors would treat for lyme with this kind of result.

    It's so ridiculous that we have to go through this kind of confusion! I wish the medical community would get their act together related to this lyme situation!
  10. Hootie1

    Hootie1 New Member

    Oh, I totally agree! My doctor NEVER even suggested that Lyme could be an issue.

    I don't think that my doctor's will write a script for ignex because they use quest. We'll see. I think that I will go ahead on the website that you suggested in the fibro/cfs board and just go ahead and pay for it. For heaven sakes, I want to be sure that I know what I have and that it is documented. I am also in the middle of filing for disability.

    Many days I have a very difficult time functioning beyond a basic level. I struggle with hormonal issues as well which hurts my self esteem terribly.

    Thank you for responding so quickly!
  11. mollystwin

    mollystwin New Member

    And good luck with your testing. Please post your progress.
  12. Hootie1

    Hootie1 New Member

    Thank you for all of your valuable information on both boards.

    I will stay posted. I have to admit that I am a bit nervous that #1 my doctor won't do it and #2 if it is done, it won't be done properly.

    I become very anxious and upset about the fact that these damn doctor's refuse to further test even when you pay out of pocket- that is outrageous!!! How arrogant is that!

    I have an appt at the FFC next week, but I am going to cancel it until I check with my GP as to whether he will order the test or not.

    Do you know how long I would need to be off of the antibiotic prior to testing?

    Also, I found out something interesting when I was researching lyme testing last night (until wee hours of the morning!). The test could be affected if one is taking anti-inflammatory medicines - which I was!!

    Thanks again.
  13. mollystwin

    mollystwin New Member

    Just answered your other post. I think you need to be off Abx for a week or two prior to testing. I was on samento because I didn't know I wasnt' supposed to be on abx, and I still tested positive!!
  14. 6t5frlane

    6t5frlane New Member

    The 31 band I'm told shows a later stage infection. Having ++ means you have had it probably more then 6 weeks. The 31 band was used to make the Lyme Vaccine
  15. mollystwin

    mollystwin New Member

    I'm learning more stuff everyday!!
  16. 6t5frlane

    6t5frlane New Member

    My llmd said that the reason the CDC did not include band 31 on there criteria was because since it was used in the Lyme Vaccine they thought people might show positive because they got the shot and band 31 would show up. If you never had the vaccine then it would not matter and would indicate the probability of later stage Lymes
  17. Hootie1

    Hootie1 New Member

    I got my IGG results today:

    **23 - 25 IND
    28 +
    **39 IND
    **41 +++

    Those darn IND!!!! Why can't they either be + or -!! The IGG results make sense since I have been sick for the last 10 years.

    What do you think?

  18. mollystwin

    mollystwin New Member

    You have activity on three double starred bands. I believe this means something. Let us know what the dr. thinks.
  19. monicaz49

    monicaz49 New Member

    Welcome. I was diag w/ cfs and fms too. I am IGENEX positive and started treatment recently.
    I have gotten so much grief from regular docs regarding my igenex results. They say WHY IS IT THAT IGENEX IS THE ONLY PLACE YOU CAN GO IN THE WORLD TO GET A POSITIVE LYME TEST. YOU THINK ALLLL THE OTHER TESTS OUT THERE ARE WRONG?

    It starts to play with your mind. Welcome to the long journey ahead of you. Good news...now you can see if antibiotics will help longterm! Lets cross our fingers :)
  20. 6t5frlane

    6t5frlane New Member

    The problem with band 41 is that it's the tail of the bacteria. It can also be positive for other bacteria not just Lyme. Lymenet.org Go there and look up western blot bands