IGENEX test results

Discussion in 'Fibromyalgia Main Forum' started by TrishinSpokane, Feb 16, 2011.

  1. TrishinSpokane

    TrishinSpokane New Member

    I received my test results today. I would greatly appreciate any help/comments you have. Thank you in advance!!

    IgG results

    18 kDa -
    22 kDa -
    23-25 kDa -
    28 lDa -
    30 kDa -
    31 kDa IND
    34 kDa -
    39 kDa IND
    41 kDa +
    45 kDa -
    58 kDa ++
    66 kDa -
    73 kDa -
    83-93 kDa -

    IgM results

    18 kDa -
    22 kDa -
    23-25 kDa -
    28 kDa -
    31 kDa IND
    34 kDa IND
    39 kDa -
    41 kDa +
    45 kDa -
    58 kDa -
    66 kda -
    73 kDa -
    83-93 kDa -

    Serum, Whole Blood and IFA were negative as well.
    The paperwork included with the test results states that IGENEX is considered negative for Lyme if less than 2 starred bands and CDC/NYS negative is less than 5 starred bands for both the IgG and IgM tests. My pain specialist was kind enough to order the tests for me, but is not LLD, so I need to try and find a LLD in my area.

    I have been diagnosed with CFIDS, Fibromyalgia and chronic EBV and CMV and intermittent HHV6. I have had the CEBV for 10+ years, CMV 4-6 yrs and HHV6 2+ yrs. Please comment if you can help with what I have posted!! Thank you so very much!!

    [This Message was Edited on 02/16/2011]
  2. lea

    lea Member

    recommend you post on flashlymenet.org, and post where you live, and that you are looking for a llmd.
  3. victoria

    victoria New Member

    that is the best place to find a good LLMD.

    Remember that Lyme is a clinical diagnosis regardless of what a western blot says, even IGenex is 50-70% reliable. The CDC also says it remains a clinical diagnosis.

    The reason for this is because the Lyme can quickly disappear out of the blood and invade blood and tissue cells to hide, as well as go into a "cyst" form. Many bacteria can form cysts, including e coli. Lyme also has a very slow replication time so that makes it also verty hard to catch in the bloodstream.

    Good luck. A trial of abx would be a good tthing to try with an experienced LLMD.

  4. ktp812

    ktp812 New Member

    My WB test was almost identical to yours except I had a 41+++ on the IgG plus many of the same IND all on the starred bands.

    I did treat for 3 years with zero success by one of the top LLMD in the country. I feel that anyone who has been sick for a while and has symptoms should definately try a trial of abx and see what happens. My doc told me at least 3 months..remember that some people do have reactions to abx which they think are herxes but are not.

    All in all I had 3 seperate IgeneX tests and 2 co-infection tests along with 3 CD-57.
  5. victoria

    victoria New Member

    Sorry you didn't get good results, ktp. 3.5 years of abx saved my son's life IMHO because of the rate he was deteriorating, but, it didn't cure him. Those with long term Lyme have a much harder time unfortunately.

    what I've observed is usually one needs to change abx or take a combination of them... also flagyl is good to dissolve cyst form, etc....

    there are different varieties of Lyme plus one needs to be evaluated for other tick born infections, there are more than a few including mycoplasma. Bartonella alone has over 30 different varieties. Blood testing for infections other than Lyme have even worse reliability, most less than 50%.

    Good luck...

    [This Message was Edited on 02/17/2011]
    [This Message was Edited on 02/17/2011]
  6. Nanie46

    Nanie46 Moderator

    Here are 2 western blot explanations from 2 LLMD's.....

    read them carefully and compare each of your band results with their explanations....my LLMD says that "IND" results are like a weak positive....like a light fingerprint....it's not dark, but still the same fingerprint.

    western blot info on page 7 of this very important paper by a lyme expert:


    and also this western blot info:


    The others are right about going to lymenet to find a LLMD.

    Go to lymenet.org........click on flash discussion.....sign up for free.....click on the "Seeking a Doctor" board.....click on "Post new topic" and create a post asking for a LLMD in your state.

    You can also try clicking on "Support Groups" on the left side of the page, click on the appropriate country and then state....see what lyme support groups are listed for your location that you can contact and ask for suggestions for a good LLMD....their sugggestions/list may vary from the one you would receive on the seeking a doctor board.

    Then go to the Medical Questions board on lymenet and read, read, read. Post your questions too. There is also a good General support board and activism board.

    Band 31 kDa can cross react with viruses. Igenex does have a test to see if band 31 is reacting due to a virus or not. (31 kDa epitope test)

    Band 34 is Outer Surface Protein B, a lyme specific band. Dr C says that band 58 is lyme specific also.

    You definitely need a good eval from a good LLMD for lyme and all related coinfections.

    Many people who have lyme also have Babesia, Bartonella, etc and must be addressed or lyme will not respond well to Rx.

    In the first link I listed above, read the coinfection info on pages 22-27.

    Many people with Babesia have post exertional malaise and severe fatigue in general. Some have night sweats and/or air hunger.

    Bartonella is often associated with anxiety and mood swings, among other symptoms.

    Important to remember: testing is not the final answer at all. Lyme should NEVER be ruled out based on a test result that reads "negative". Many people with lyme have only had offically negative results.

    Lyme and other common coinfections are diagnosed by history, symptoms, exam, labs, etc. (A clinical diagnosis). Many people go undiagnosed and untreated because they see that "negative" result and think they do not have lyme.......wrong!

    Here are some more resources...





  7. ktp812

    ktp812 New Member

    Hi- I was seeing one of the best LLMD in NY and even he couldn't get me better and I can tell you they sure tried. I was on at least 15-20 combo's of abx including IV and IM. I didn't get well because I don't think I ever had Lyme..I was also treated for all the co-infections.

    Unfortunately I am more debilitated today than I was almost 7 years ago..I am seeing a new doctor in two weeks and will bring him all my old test results and see what he thinks..
  8. victoria

    victoria New Member

    At least he sounds like he knew what he was doing. I really wish there were better tests/a way to find out aside from doing trials of meds for the different infections. This is too often such a mystery for all of us.

    One of my friends with CF/FM/ME says he has the "fill in his name" disease, and I have the "Victoria"disease and you have the "ktp disease", etc., because no one thing works for any of us or not completely. He's been disabled for about 20+ years and nothing much ever comes up on any of his tests (and he's seen all the top doctors in CF/FM & Lyme here and in other countries).

  9. ktp812

    ktp812 New Member

    victoria- nothing ever shows up on any of my tests either..only the first CBC I had done when I became ill. The values were all very high so they knew something had attacked me but what?

    I feel that I have been to the best Lyme doctor and now I will be seeing one of the best CFS doctors in 2 weeks. I have been told I am a complicated case, out of the box, complex etc....

    I am praying that the new doctor in Boston will have some different ideas on what might be going on or have some other tests I have never had before...I think he is my last hope in all this.

    I truly feel like an alien has taken over my body and I am no longer here.
  10. lea

    lea Member

    They are now realizing that you need to get rid of co-infections before they can work on the lyme. Even, with negative co-infection tests; because coinfections are very difficult to get a positive test for(since the tests are not sensitive enough).

    good luck,
  11. victoria

    victoria New Member

    As i said up above, the reliability for other infections is way worse than for Lyme and that's why an experienced Lyme doctor is key.

    In some (if not many) the Lyme needed to be treated immediately - in my son's case he was 2X positive to the CDC's tracking standards in just the first 6 months and had been going down rapidly until starting abx.

    There was no waiting time available, not with his worsening symptoms - from neuro to muscular to cardio.

    PS: he was dx'd in '05, he is now stable, but is disabled

    [This Message was Edited on 02/19/2011]
    [This Message was Edited on 02/21/2011]
  12. Mikie

    Mikie Moderator

    I'm so sorry. My prayers are with you. My HMO wouldn't pay for sensitive tests but we knew it was a mycoplasma infection which triggered my CFIDS, so we treated that. I also have had to take AV's to keep whatever Herpes-Family virus(es) that lie latent in my body. We are walking Petri dishes for certain types of pathogens and that makes it extremely difficult to treat what ails us.

    Please let us know what you find out.

    Love, Mikie
  13. victoria

    victoria New Member

    I don't think the tests have gotten any more sensitive unfortunately. I don't know if it's worthwhile for my son to keep getting tested unless something remarkable happens (either he really regresses or there's some new miracle testing).

    I hope ktp and others can find good doctors to ultimately figure it out, there are (too) many possibilities. At least my son got some results. I can't imagine how frustrating it would be to get none.

    So much of what many of us go through reminds me of a pt my DH had when he was a psychologist. He told her there was nothing wrong with her psychologically, & to keep looking for a dx. She'd been ill for about 15 yrs. with many similar symptoms.

    About 3 years after seeing him, she called him to say she finally found out she had brucellosis.

    I think we all need a lot of good luck. These bacteria and virii are far more devious than we ever thought.


  14. Chootik

    Chootik New Member

    I haven't posted in a long time. I was working but recently decided that I couldn't do it anymore and had to get to the bottom of this illness.

    So I quit my job, which was really scarry but I'm determined to figure this out once and for all and get better.

    I would love to hear how your son is doing? Last I checked with you he was doing the Hyperbaric treatments, is he done with those? Did he get any benefit from them?

    I'm actually thinking of doing that and IV Antibiotics. Trying to bring the big guns to kill the damn thing.

    But on a related topic on testing, I'm looking for the best Bart Test.

    It seems the best tests right now for are the Igenex FISH Test and the Galaxy Labs Test.

    Do you know which one is better? I agree with everyone here that testing is not great but we have to figure out what co-infections there are aside from Lyme. Because if we just treat Lyme (my case) we won't get better, which is what has happened to me.

    I'm better but def. not cured. There is still something lurking around, so unless we get to the bottom of it, not sure if we'll ever get better.

    By the way, do you get Scott F.'s newsletters? I'm sure you do since you are so informed but I found good info in his emails that is helpfull.

    Ok hon. Wishing you all the best. I'm also on Lymnet if you want to reply back to me there.

  15. ktp812

    ktp812 New Member

    I had my Bartonella testing done through Igenex. They tested the IgG and the IgM using blood and I also had a urine test I believe for the Bart.
    I did have a elevated titer on the IgG test...I am not sure which is best but I was seeing Dr. H in NY and that is the lab he used for my tests..

    Hope this helps. I am sure others on Lymenet have had some other labs do the Bart test.
  16. munch1958

    munch1958 Member

    My Quest & Igenex WB results are in my profile. I also have kept a running diary of my progress with this illness after going to a Fibro and Fatigue Clinic. The FFC protocol is based on the work of Dr Kent Holtorf who was a CFS sufferer. Their protocol is based on what the doc used to fix his own CFS.

    While I don't recommend the way the FFC clinics treat patients, specifically their IVs and supplements are way over priced, but I do recommend their kind of lab testing. In other words, they test you for everything known to cause fatigue, muscle pain, brain fog, etc.

    They did find more wrong with me than just some positive markers for Lyme disease. I was deficient in B12; had low Vitamin D levels; had multiple areas of hormone dysfunction like under treated thyroid, non-existent treatment for low IGF-1 (growth hormone) or pituitary function and non-existent treatment for low adrenal function (barely made any DHEA or cortisol) and an unidentified sleep disorder. I had high levels of Cardio-CRP, high levels of inflammation and a few other things.

    Based on my own personal experience in dealing with this crud since maybe 1969 (age 11) with my first official fatigue treatment in 1981, I think we need to be treated for ALL kinds of underlying pathogens, correct any vitamin deficiencies, fix leaky gut, find and eliminate food intolerances, correct hormone deficiencies and address blood disorders like hypercoagulation.

    Here is some basic info on pathogens that cause disease in humans:


    For us, this means:

    antibiotics for bacteria like Borrelia, mycoplasma, CPN, etc;
    anti-protazoa meds for Babesiosis (Mepron, Artemensia, Malarone) + Flagyl for borrelia cysts;
    antivirals (AVs) for viruses and;
    anti-Fungals for candida.

    Some don't get well until parasites are also treated too. For others, mold issues need to be addressed too. It depends on the past exposure.

    Many don't get well until underlying problems with B12, Folate, and the methylation cycle are repaired.

    Some have MCS to deal with too. For me, glutatione worked wonders. I have been nebulizing it since the fall of 2006 and no longer have MCS which is a MIRACLE in itself.

    I had hypercoagulation or too sticky blood. This was corrected with 10.5 months of heparin. Some people use Lumbrokinaise and others use Nattokinaise and others use enzymes.


    1. IGG WB 5 of the 10 bands (18,23,28,30,39,41,45,58,66)
    2. Criteria based on early Lyme
    3. IGENEX adds 3 specific bands (31,83 and 34) and 3 non-specific bands (22,37,73)

    1. IGM WB 2 of the 3 bands 23, 39, 41
    2. IGENEX adds 3 specific bands (31,34 and 83) and 3 non-specific bands (22,37,73)

    1. IGG WB: 2 specific band criteria has demonstrated improved sensitivity and maintained specificity
    2. Can diagnosis Lyme if any one band (IgG or IgM) of 18, 23, 28, 39 or 58 kDa or if any 2 or more of the following bands are present; 30, 45,41 and 93
    3. If negative or require further confirmation, can obtain IGENEX WB (adds specific bands of 31, 34 an 83, which are typically seen in chronic disease)
    4. Positive if any one band of 18, 23, 28,31,34, 39, 58 or 83
    5. If positive for Borrelia on any test, consider testing for neurotoxins
    6. Consider testing for co-infections (discussed below)
    7. Check for coagulation defect (See Hypercoaguable State in CFS and FM)"