Home Forums General Discussion Please help interpret these Igenex Lyme results

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  • #305072
    redrock
    Participant

    First let me say that I am somewhat skeptical of this whole Lyme thing. I have been on Lyme boards where they try to convince EVERYONE they have Lyme disease and it’s a cult-like atomosphere. And I have heard that everyone tests positive on Igenex tests. But nevertheless I would be interested to know what you all think of these results. BTW my AP doctor is apparently clueless about Lyme. He gave me page 2 and said it was negative and didn’t even look at page one, he thought it was a copy of page 2, clearly doesn’t know the difference between IGG and IGM which gives me grave concerns about him in general…

    Also if you have the name of a LLMD for my area which is South east Florida, zip 33435, Boynton Beach area. Here is what my report says:

    IGENEX IGM RESULT NEGATIVE
    CDC/NYS RESULT NEGATIVE
    18 kDa. –
    22 kDa. –
    **23-25 kDa. ++
    28 kDa. –
    30 kDa. –
    **31 kDa. –
    **34 kDa. –
    **39 kDa. –
    **41 kDa. IND
    45 kDa. –
    58 kDa. +
    66 kDa. +
    73 kDa. –
    **88-93 kDa. –

    IGENEX IGG RESULT NEGATIVE
    CDC/NYS RESULT NEGATIVE
    18 kDa. –
    22 kDa. –
    **23-25 kDa. –
    28 kDa. –
    30 kDa. –
    **31 kDa. –
    **34 kDa. –
    **39 kDa. –
    **41 kDa. ++
    45 kDa. –
    58 kDa. –
    66 kDa. –
    73 kDa. –
    **88-93 kDa. –

    #353887
    Maz
    Keymaster

    @redrock wrote:

    First let me say that I am somewhat skeptical of this whole Lyme thing.

    Also if you have the name of a LLMD for my area which is South east Florida, zip 33435, Boynton Beach area. Here is what my report says:

    IGENEX IGM RESULT NEGATIVE
    CDC/NYS RESULT NEGATIVE

    **23-25 kDa. ++
    **41 kDa. IND

    IGENEX IGG RESULT NEGATIVE
    CDC/NYS RESULT NEGATIVE
    **41 kDa. ++

    Hi Redrock,

    Well, I won’t try and convince you of anything because I think we each have to do our own research and make an informed decision for ourselves. 😉 In case it helps, though, I’ll offer some insights for you to interpret your results for yourself, bearing in mind I am just a fellow patient and these results require the expertise of an experienced LLMD who can look at them in combination with your history, signs and symptoms to make a clinical diagnosis. Lyme is a clinical diagnosis, ultimately, because it is a highly suppressive set of infections and it can take many years for some people to show positive, if ever (see Pam Weintraub’s book, Cure Unknown). I’m an example of this….2 EM rashes and only testing positive (+) on Bands 39 and 41…on IgM this is a CDC positive…however, these bands were only positive on IgG (I also had a positive Band 41 on IgM with an IND on Band 22-23), so according to the CDC, I was negative, in spite of the EM rashes, which is pretty ironic, because if you have EM rashes, you are positive for Lyme, regardless of what the labs say. 🙄 Go figure…

    Okay, so here are two links to help you interpret your results. Would suggest reading these carefully, several times, if necessary, because it’s a lot to take in and understand:

    http://www.lymenet.de/labtests/brenner.htm

    http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=1;t=042077;p=0

    Band 41 on its own is fairly meaningless, because it can cross-react with other spirochetal species that have a flagellum (tail)…although a double-starred band, it doesn’t necessarily mean it’s Lyme unless it’s seen in addition to other borrelia-specific bands.

    As you’ll see in the first link, Band 23-25 is a double-starred band, highly specific to Lyme, and is an antibody band that shows reactivity to borrelia “outer surface protein C” aka OSP C. With two ++, this means that you were producing a good amount of antibody to this borrelial antigen.

    “1. the first band to show up on a Lyme disease patient’s IgM blot is usually the one at 41 kDa,
    2. followed by the OspC band and/or the one at 39.

    The OspC and 39 kDa band are highly specific for Bb, while the 41 kDa band isn’t. That’s why the 41 by itself isn’t considered adequate.”

    So, essentially, you and I are fairly similar in our results…except that your results appear to be more recent than mine. We both tested positive on Band 41 and the two earliest bands to show up that are highly specific to Lyme are Bands (23-25) or Band 39.

    If you check out the following link, OSP C is considered so specific to Lyme, it is suggested that it be used to produce a Lyme vaccine:

    http://www.jbc.org/content/276/13/10010.abstract
    http://www.ncbi.nlm.nih.gov/pubmed/14970347

    If you do a websearch on “Borreliosis Outer Surface Protein C,” you should find quite a bit of info comes up to wade through.

    This is as much as I am able to share, Redrock.

    As for LLMDs in Florida, my understanding is that they are a mixed bag and would suggest asking others who see them in your state (on a Florida Lyme support group) who they would personally recommend. Each will have their own approach – some more allopathic, integrative or naturopathic – so it’s important to research these guys to ensure that they can supply the services you require, if you choose to see a LLMD. Will send a PM with this list.

    Does the above help any?

    PS. Re: your IgM result, Had your Band 41 shown a + rather than an IND (indeterminate) reading, then you would have been CDC and IGeneX positive. As it stands, you are neither CDC nor IGeneX positive, bearing out that not everyone will test definitively positive on IGeneX labs. That said, Dr. C remarks in the link above (Kim’s LLMD in MO) that if a person tests IND on any band, then some antibody is showing up, just not enough for a full positive at that moment in time. In this sort of situation a question that might be asked is: “Can one be a little bit pregnant?” The “rub” here is that you do show up significantly positive with two +s on Band 41 on IgG.

    #353888
    redrock
    Participant

    Thanks for your help. I have to decide if I am reading to step aboard this boat along with other things I am dealing with, i.e. breast cancer. I am one of those CREST people with very few symptoms to begin with, just a bit of Raynauds and “mild” pulmonary hypertension tested via echocardiogram, yet no breathing difficulties to speak of. I got on AP to make sure my CREST does not advance. Whether I can go the route of exploring the Lyme issue to it’s full extent depends on A) Time; and B) Money. My life is very very busy and in the absence of symptoms making my life unbearable, I’m inclined to put this on the back burner unless or until things get significantly worse.

    #353889
    Maz
    Keymaster

    @redrock wrote:

    I have to decide if I am reading to step aboard this boat along with other things I am dealing with, i.e. breast cancer.

    …Whether I can go the route of exploring the Lyme issue to it’s full extent depends on A) Time; and B) Money. My life is very very busy and in the absence of symptoms making my life unbearable, I’m inclined to put this on the back burner unless or until things get significantly worse.

    Hi Redrock,

    Yes, can see why this wouldn’t be an easy decision, but you’ll always find support here whatever you decide is right for you.

    Btw, did you know that the tetras have some great properties for breast and other cancers? There are quite a few studies on PubMed if you’re interested in doing a search. 😉

    Be well, Redrock, and hope you’re doing okay.

    #353890
    Cheryl F
    Keymaster

    Redrock:

    I completely appriciate your need to keep is simple so to speak. Like Maz said, I agree that it is very important to become well informed about the various infections that are at the root of your health issue(s).

    The first “AP” doctor we saw is also an LLMD, so she was tested through Igenex for Lyme.

    My daugther has/had CREST and started AP with 3 days of IV Clindy, then had an allergic reaction, then started Minocin at 100mg BID. She did mino only for a few months, then I added a couple supplements that I learned about on this board, including Bromelain which supposely can make the antibiotic more potent. She recovered quite nicely on that protocol.

    About six weeks after starting AP, the Igenex test results came back, and like you, she had “+” on a couple of the highly lyme specific bands. Per the information available, she is clearly positive for Lyme. Yet, the minocin worked well. About 6 months after starting minocin, we added Zith intermittantly.

    While Jess had technically never been treated for Lyme, she had rotated through many of same antibiotics that are used for “Lyme” treatment.

    I guess my point is to just take it one step at a time, you have alot on your plate, so I don’t think that you have to take it all on immediately or at the same time. Do what you can to learn so that you can make well informed choices as you are able to further your protocol for the treatment of CREST (or Lyme as the case may be).

    Good luck!

    Cheryl

    #353891
    redrock
    Participant

    Thanks well the good news is that one of the LLMDs in my area is also on my insurance, so for the cost of a co-pay, I could get some info at least.

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