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  • #305092
    toml
    Participant

    Would be grateful for some interpretation of these test results just received:

    IgM

    18 kDa _
    22 kDa _
    ** 23-25 KDa _
    28 kDa _
    30 kDa _
    ** 31 kDa _
    ** 34 kDa _
    ** 39 kDa _
    ** 41 kDa IND
    45 kDa _
    58kDa _
    66 kDa _
    73 kDa _
    ** 83-93 kDa _

    IGG

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

    Tom

    #354007
    Maz
    Keymaster

    @toml wrote:

    Would be grateful for some interpretation of these test results just received:

    IgM

    ** 41 kDa IND

    IGG

    ** 34 kDa IND
    ** 41 kDa ++
    58kDa +

    Hi Tom,

    Well, your IgM (present infection) is pretty non-reactive. Band 41, on it’s own, is not considered all that significant, as it could be due to other spirochetal infections (e.g. oral spirochetes, heliobacter pylori, syphilis, as well as to Lyme). It is a protein that is expressed on organisms with a flagellum (whip-like tail). When Band 41 becomes significant is when it shows up in relation to other borrelial-specific bands. In your case, you are more indicative for Lyme on your IgG (past infection) with three antibody bands showing up – 1 positive double-starred band with two ++ (band 41), one non-starred band with one + (band 58) and one highly specific double-starred band for Lyme with an Indeterminate reading (band 34).

    Band 58 is a type of borrelia protein that shows up when exposed to elevations in temp, called heat shock.

    Band 34, a highly specific band for Lyme, also known as Outer Surface Protein B (or OSPB), was one of the bands removed from the standard test and one of the reasons why the standard tests are inadequate and miss a lot of people. The reason it was removed is outlined here at this link:

    “A second criticism of the CDC Western blot criteria is that they fail to include the 31 and 34 kDa bands. This does indeed seem like an odd decision, since antibodies with these molecular weights correspond to the OspA and OspB proteins of B. burgdorferi, which are considered to be among the most species-specific proteins of the organism.

    So why didn’t Dressler et al. include them?

    Answer: These bands tend to appear late if at all in Lyme disease patients, and did not show up with great frequency in the patients that the Dressler et al. group studied (though they did show up sometimes). As a result, they weren’t deemed to have much diagnostic value and didn’t find their way onto the CDC hot list.

    However, while the absence of either of these bands from a patient’s immunoblot result does not rule out Lyme disease,
    their presence is hardly meaningless.”

    Thus, many Lyme disease experts believe it is a serious mistake to exclude these two antibody proteins from the list of significant bands.

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

    Tom, you’re showing up IND (indeterminate) on Band 34. Dr. C, a well-known LLMD has this to say about IND bands:

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

    “Many would say the ” +/-” equivocal [“IND”] bands are not significant. The problem I have with that, is that there are “-” negative bands. The lab has no trouble calling some bands negative. So they must be seeing something when they put “+/-” at some bands.

    The only thing that makes sense, is that there is a little bit of that antibody present in your serum. If the “+/-” equivocal is reported on the borrelia associated bands, it is usually significant, in my clinical experience. This is a strong clue that I am on the right track.”

    In this sort of instance, there are a few things you can do:

    1. Ignore the test and treat with low dose AP.
    2. Call IGeneX and ask if there are any further etiope tests they can run on Band 34 for you to confirm the IND read on this band.
    3. See an experienced LLMD who would take these results, in combination with your history (past exposures to ticks, living/visiting Lyme endemic regions, etc) and clinical presentation of signs/symptoms to either make a diagnosis or rule out Lyme for you. Sometimes a positive coinfection test can provide further confirmation of Lyme, too, or just signs/symptoms of the presence of a coinfection.

    What might have happened in your case…and this is just fellow-patient speculation, is that you might have been infected for a number of years and your antibody titers fell off as time went by (see Brenner link above):

    “Similarly, IgG response can remain strong or decline with time, again regardless of treatment.”

    Lyme is a very immunosuppressive set of infections, which can result in some of the sickest folk not being able to create enough antibody to produce a positive result. Also, Bb (borrelia burgdorferi) is a highly pleomorphic organism that literally can go “underground” and is able to trick immune function by shape-shifting into cystic forms that have reduced outer surface proteins. With little or no antigen (bacterial toxin) being produced, there would be reduced immune response (antibody). This is why some LLMDs also use the CD57 test, which measures immune function:

    http://www.publichealthalert.org/Articles/gingersavely/everything%20you%20always%20wanted.html

    Hope something here helps a bit, Tom. I’m just a fellow patient and harvesting info from these links with what I’ve learned over time about them, so my personal opinion is pretty irrelevant. An experienced LLMD would be able to help elucidate further. 😉

    #354008
    toml
    Participant

    Many thanks for the prompt reply and thorough information. I sincerely appreciate your information as patient to patient info is very informative, especially when dealing with something as elusive as this stuff.

    I know an emergency room doc who practices out your way and has seen a lot of Lyme. She is not at all LLMD, but in talking with her she did mention asking the lab to do a PCR test that would pick up genetic material. Any information on that test as it would relate to what I am dealing with?

    I will probably act on both of your suggestions: Call the lab and see if there are more test to clarify my results and I do have an appointment with a recommended Lyme doc who also does work with complex infections. Seems like many of the Lymies in the recent support group meeting like him.

    Thanks again and hope you and family have a Merry Christmas

    Tom

    #354009
    Maz
    Keymaster

    @toml wrote:

    I know an emergency room doc who practices out your way and has seen a lot of Lyme. She is not at all LLMD, but in talking with her she did mention asking the lab to do a PCR test that would pick up genetic material. Any information on that test as it would relate to what I am dealing with?

    Hi Tom,

    From what I understand, PCR testing hasn’t been standardized…meaning there is no real agreement as to how these tests are to be adequately performed between different labs and no standard parameters for specificity, as a result. The ILADs treatment guidelines speaks briefly to this in Point 16 at the following link:

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

    “Several additional tests for Lyme disease have been evaluated. These include antigen capture, urine antigen and polymerase chain reaction. Each has advantages and disadvantages in terms of convenience, cost, assay standardization, availability and reliability. These tests remain an option to identify people at high risk for persistent, recurrent and refractory Lyme disease but have not been standardized.”

    My LLMD just ran an IGeneX western blot, saw my two bands positive and then diagnosed me based on clinical presentation and history (past tick bites and two EM rashes). I think, generally speaking, the IGeneX WB is considered the more reliable test by most LLMDs, but each has their own preferred testing methods and labs used. So, you could have a go with the PCR, but it may not be needed when you see your new LLMD and might be better to wait to see what he has up his sleeve for you in terms of further testing. All this can rack up the costs, in other words, when Lyme ultimately has to be a clinical diagnosis. 😉

    Thanks for your very kind wishes for the holiday season and sending same back to you and yours, Tom! 😀

    PS. If Dr H at IGeneX suggests further testing on Band 34, it would just require a further script from your ordering doc, as they hang on to the blood sample for a month or two.

    #354010
    toml
    Participant

    Hello
    I was recently seen by LLdoc recommended by most people in our local support group. He called my W Blot results I posted indeterminate and after about a 1.5 hr consult with me is leaning towards Lyme. To verify this he has me on Biaxin 2x day which will challenge the Lyme critters if present. Testing again in a month should show more definitive Lyme results.

    After one week on the Ap I have had no herzing or other reaction. However I have been on a gradual decline in symptoms (pain, brain fog etc) for about 4-5 weeks, well before starting the AP. I believe this fading of symptoms is largely due to becoming wiser in adding back exercises. Prior to this gentler approach, I would start exercising after experiencing a string of a few good days. That would inevitably cause a flare of some strength and duration. After a few episodes of that I have kept my exercise regime in a more gentle mode of walks and some stretching of the affected joints.

    Is there any average time it will take to start herzing?

    Will keep you all posted as the process unfolds.

    Tom

    #354011
    Maz
    Keymaster

    Hi Tom,

    My Lyme herxes usually hit two to three weeks in on the Biaxin/Mepron combo and will last anything between 2 to 5 days. Each antibiotic protocol I’ve been on for Lyme and coinfections, though, has produced different results with herxing. With Moxatag (extended release amoxicillin), for instance, my herx came three days in and lasted 5 weeks. Herxing will be unique to most people, dependent on pathogen load, strain variation, strength of immune function, whether a particular abx is effective for the pathogens within a person’s load….lots of variables.

    Tom, I’m a little confused by your LLMDs approach…Lyme is primarily a clinical diagnosis according to ILADs. If Lyme tests are positive, then this is a nice bonus, but a diagnosis really needs to be made based upon patient history (exposure to ticks, living or visiting endemic regions, etc) and presentation of signs/symptoms. It sounds like this particular LLMD is looking for positive western blot results before committing to a clinical diagnosis, which is what most LLMDs will do. My doc, for instance, will gauge my progress based on my herxing and this may be more obvious with some antibiotics than others. If one abx isn’t producing a clearly definable herx, then it’s switched out to something else. He’s never relied upon testing to determine whether or not my symptoms warrant treatment or not, but based his treatment plans on whether or not they have been effective for my symptoms and whether or not a particular abx has produced a herx.

    That said, every LLMD works slightly differently, so I don’t want to presume anything here…it’s just that I don’t think one antibiotic will do much for anyone in the time space of a couple weeks for Lyme and its questionable whether or not this type of challenging actually works to produce more definitive test results. What I’m wondering is whether challenging with abx may be just as likely to push spirochetes into cystic forms, which have reduced outer surface proteins (OSPs). With reduced OSPs, the body is likely to respond with less antibody, as there is less antigen to pick up in a test. I’ll be interested to know how this turns out for you, Tom…is he going to re-test you with standard tests or IGeneX labs? It might be worth putting in a call to IGeneX to speak with Dr. Harris to ask about your LLMD’s plan and whether or not you could expect to see more definitive results. As owner of this lab, he’d be able to give you a better idea as to this.

    #354012
    toml
    Participant

    Hello

    Thanks for the good response and information concerning herxes.

    I too have heard that these critters under treatment can revert to cysts, may not be killed by the abx and consequently be less likely to show up on a test. I will research this approach with the lab as it will be a second W Blot at IGeneX that my doc is recommending. He has treated others here in our support group and I will also ask their opinion of the abx challenge approach.
    He did evaluate all my symptoms thoroughly however but could not say positively that it is Lyme. I forgot to mention also that he wanted me to note the herxing response, if any, during this month on abx.

    Diagnosing and treating this illness is certainly is a muddy, confusing picture isn’t’ it? Too bad there has to be so much time and dollars wasted in just justifying the existance of this disease that could be better spent on effective healing measures.

    Tom

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