Igenex results - appreciate help please

Discussion in 'Lyme Disease Archives' started by maps1, Mar 31, 2009.

  1. maps1

    maps1 Member

    My results came back March 23 and docs office called to say negative. Had doc appointment yesterday and even the doc said she did not really understand the results but thought it was negative.

    But after all the posts here, which by the way prompted me to do the test, I know that there is some significance in the bands result. So I am posting the results in the hopes that someone more knowledgeable and less fogged could guide me.

    I need some confirmation this is positive for lyme as I can hardly believe it is real, my stomach is in a knot and I am feeling all shaky. It will be totally unbelievable if it is true.



    IFA, B BURGDORFERI G/M/A 140 titer

    I assume this is lyme and so this result is negative


    LYME IgM WESTERN BLOT

    IGENEX IGM RESULT POSITIVE
    CDC/NYS RESULT POSITIVE

    **23-25 kda positive
    **39 kda indeterminate
    **41 kda positive
    **83-93 kda indeterminate

    IGENEX IGG RESULT NEGATIVE
    CDC/NYS RESULT NEGATIVE

    ** 41 kda indeterminate


    Thanks to anyone taking the time to respond.

    Regards
    maps
    [This Message was Edited on 04/01/2009]
  2. Nanie46

    Nanie46 Moderator

    Hi maps,

    Your result is definitely POSITIVE!!!!!!!

    The significant result here is the IgM:

    Bands 23-25, 39 and 83-93 are species specific bands. Only a person who was exposed to Borrelia burgdorferi would produce antibodies to the proteins on those bands.

    My LLMD said that an indeterminate result is like a fingerprint. It doesn't matter how dark the print is, it's still the same fingerprint....like a weak positive.

    You need to find a good Lyme literate MD. Go to lymenet.org....click on flash discussion....click on "Seeking a Doctor"...sign up for free like you did here.......then post on the seeking a Dr board something like this..."Need an LLMD near Toronto Canada".

    You will get at least one private message with names of LLMD's. Not sure if there are any in Canada or if you treat in the US.

    If you and your Dr want to read more and see why this is a positive result, go to Dr B's guidelines and read the short western blot explanation on page 7:

    http://www.ilads.org/lyme_disease/B_guidelines_12_17_08.pdf


    Only a good LLMD will be able to sort out if you have other coinfections and what treatment you need. It is usually long term combination antibiotic therapy with lots of supplements also.

    It takes months or years to recover. There is no cure, but we can go into remission with no symptoms. There have been many success stories!!!

    Since you have lyme (and potentially other tick borne coinfections that are common such as babesia, mycoplasma, bartonella, ehrlichia and others) you should definitely read the entire paper plus these other very importand ILADS guidelines and other resources:

    http://www.ilads.org/files/ILADS_Guidelines.pdf


    http://www.lymepa.org/Basics2007v1.2Rev.pdf


    http://www.lymediseaseassociation.org/


    www.lymenet.org

    Since Dr's don't understand how to recognize, diagnose, interpret test results and treat lyme, you can see why so many people go undiagnosed for soooo long.

    Congratulations to you for finding out a CAUSE of your illness so you can get treated!!!

    Keep posting here and go to lymenet.org too.

    All the best to you!
  3. maps1

    maps1 Member

    here is the correction:

    IFA, B BURGDORFERI G/M/A 140 titer

    I assume this is lyme and so this result is INDETERMINATE (thought 140 was negative)

    AND

    IGG results show band 41 kda as indeterminate.

    Nannie46: Thank you so much for all the information, I have bookmarked the sites and printed off Dr. Burrascano's report.

    Yes, I will be here sharing the journey. I have been seeing a Naturapathic doctor the last three months, she is also going to provide me with information on how alternative medicine would treat this. Though I have to say I am leaning much more for a regular doctor plus the fact that I have to pay naturapathic treatment and would not have to pay anything for regular treatment.

    Still feel pretty stunned and shakey but managed to get an appointment with my gp for this pm.

    Although I have had fairly good support it will be interesting to see how my family and friends re-act to having a "real illness" :)

    regards
    maps
  4. Nanie46

    Nanie46 Moderator

    Hi maps,

    I know that some people on lymenet.org use naturopathic treatments, so they may be a very good resource too.

    I know from what I've read that people do not seem to go completely into remission with them.

    Borrelia is the most complex bacteria identified to date. It can even morph into cell wall deficient forms and biofilms that many antibiotics can't affect.

    It is a spirochete that bores into every tendon, muscle, ligament, organ and tissue in the body, especially the brain and CNS.

    That is why it is so difficult to treat. The Infectious Diseases Society of America says that you only need to treat with a few weeks of antibiotics and you are cured!!!

    That is soooo wrong, especially since so many of us have had this for so long. It takes months and years sometimes of treatments.

    In the US our insurance co's won't pay for the long term treatment we need because they side with the IDSA instead of the real lyme experts who are members of the International Lyme and Associated Disease Society.

    It's all about money. Of course they don't want to pay...and some of the IDSA Dr's work for insurance and drug co's, so there is also a conflict of interest.

    You may also have these same problems in Canada....just wanted to give you a heads up.

    It's a real travesty. I cannot imagine this happening to cancer or AIDS patients.

    That is why we pay out of pocket for our treatment...otherwise we would never be able to get well. The real LLMD's put themselves on the line to treat us, so their names are confidential.

    It's all very complicated when it shouldn't be that way.

    Let me know how you make out at your appt with your GP.

    All the best to you!
  5. maps1

    maps1 Member

    Just had my doc appointment, admittedly she is a new doc for me only seen her a couple of times.

    She ended up with it is probably a false positive!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

    She will need to talk to my cfs doc and my physciatrist (so), guess to find out if I am totally crazy. Just can't stop crying, don't know what to do, I feel like I am crazy.

    She was looking for a rash, oh my god I just can't believe this it is just too crazy.

    Do many people have false positives, any suggestions on what I should do.

    I do appreciate the responses. Guess I had better go make some tea and calm down.

    Don't want to drain you guys but are my results real.

    Thanking you all so much.
  6. Nanie46

    Nanie46 Moderator

    Hi,

    Hope you had a chance to calm down.

    You are not crazy....the Dr is totally uninformed....to put it very politely!!!

    This is exactly what most people with lyme have encountered with the mainstream medical community and why you need a LLMD.

    Igenex does not have many false postives.....you have species specific bands, remember?

    Please go to lymenet.org and post your results on the Medical Questions Board....you will get many intelligent responses to also confirm what I am telling you.

    This is exactly why sooooo many people go undiagnosed for sooooo long.
    [This Message was Edited on 04/01/2009]
  7. pw7575

    pw7575 New Member

    Maps1,

    Your Lyme test is DEFINITELY positive. Your IGM result is what you need to be looking at there. You are even CDC POSITIVE!!! Not many people ever even get a CDC positive. Your doctor is an idiot...it says right on the results that you are CDC and Igenex positive so I don't know why they couldn't interpret the results. False positives are not common. Plus you have some very Lyme specific bands. Please go see an LLMD. Clearly your doctor doesn't know anything about Lyme. You have a positive Lyme test and they should be reporting that to the CDC rather than questioning it being a false positive.

    I hope you are feeling better. I know how emotional this all is. I went through a lot of emotions and questions myself when I first tested positive for Lyme. I wish they hadn't upset you like that! Your test is positive for Lyme.

    I would definitely see an LLMD.

    Take Care!
    Pam :)