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Igenex, lyme/TBD testing, different interpretations...

Discussion in 'Lyme Disease and Co-Infections' started by HTree, Jul 27, 2012.

  1. HTree

    HTree

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    All:
    I'm wondering about Igenex.
    I hear there are lots of positive results coming out of Igenex? I don't think they are a bad lab by any means, and indeed am VERY well aware other labs (and CDC criteria for interpretation) seem to miss alot of cases (eg very specific, but not sensitive testing). So I think Igenex plays a service--
    However, i wonder if those of us with lots of infections will end up having positive results, even if we do not actually have Lyme/bacterial co infections. E.g. I know some bands are cross-reactive with EBV/herpes viruses?

    In any case, also wondering what you folks think about my lyme Western Blot results:
    IgM 31+, 41+, 39 IND -- positive by Igenex (not by CDC)
    IgG 23-25+, 41+, 34 and 39 IND -- again positive by Igenex (not by CDC)

    I have read a great deal about all this, but do wonder what your thoughts about Lab interpretation/ and Igenex specifically? And would your LLMD consider the above positive too? (I know it's also based on clinical symptoms, but...I'm still wanting input here :)

    Context: have had symptoms (ME/CFS) for twelve years at least (noticeable after Mono/EBV); was also always very out-doorsy so who knows IF/when I did pick up Tick-bourne infections...
    I did only a couple years ago try several months of Doxy, but felt no noticeable change positive or negative (aside from some upset stomach/nausea i assume side affect of the abx itself)

    Thank you all, for your energy/time :)
    Htree
     
  2. xrunner

    xrunner Senior Member

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    You can find some of the answers in this video. It's a very comprehensive presentation of the many aspects of diagnosing, incl. CDC criteria, and treating Lyme disease by Dr Horowitz (part 1. starts at min24 ca.)
    http://lookingatlyme.blogspot.co.uk/2012/05/lyme-disease-forum-ny-21-may-2012.html

    Regarding Doxy, it targets only one form of the bacteria, it's ineffective against cysts, intracellular forms and biofilm colonies whilst at the same time it can quickly increase growth of such resistant variants which may be the ones causing the most damage.
     
  3. Ema

    Ema Senior Member

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    This band is an outer surface protein and can cross react with viruses such as EBV. Igenex offers a test that can separate out whether or not this is a cross reaction or not. It is called the 31 kda epitope test.

    This band is specific for a flagella.

    This is a bacterial membrane protein specific for Bb.

    All three of these bands are important in the diagnosis of Lyme. If your clinical symptoms match, I would have no issue calling this a positive Lyme test.


    Again, another Bb specific band.


    Doxy alone may not have been enough to make a dent in the infection. Most LLMD's recommend treating all three forms the bacteria can take and these require different antibiotics. Otherwise the bacteria can convert to a form not attacked by the doxy and then just reemerge when the antibiotics are stopped. Hopefully you have a good LLMD now that can guide you through the antibiotic options. I would also consider taking something to help break up biofilms and a lot of good probiotics.

     
  4. LisaCanada

    LisaCanada

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    My husband also had a Igm 31+ and 41+ band from Igenex. He did the testing for the 31kda epitope and wAs found positive. I am wondering if anyone knows of published articles that suggest the accuracy/validity of Igenex testing. In Canada all doctors we have spoken to do not believe the test is accurate and will not treat the Lyme infection bAsed on these results. We are confused and would like to do our own homework. Thank you.
     
    taniaaust1 likes this.
  5. Timaca

    Timaca Senior Member

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    check this out: http://chronicfatigue.stanford.edu/patient_care/ Since your illness started after an EBV infection, viruses may be playing a role in your illness.

    I would get tested for the viruses suggested on the above site and treat first what looks to be most obviously wrong. You test positive for a few Lyme bands, but not many. I've had many WBs done on me over the years, and tested positive for lots of bands (at Igenex and SUNY labs). Do I have Lyme? Maybe. Maybe not. Do you? Maybe. Maybe not.

    I suggest testing for lots of things and treating for what seems to be most obviously wrong.

    Best, Timaca
     
  6. CFS-FIBRO-LYME

    CFS-FIBRO-LYME

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  7. AFCFS

    AFCFS Senior Member

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    Excellent video, long, but a good long walk around peoples' perspectives, medical responses from both sides. I see some optimism in there despite the adversity all about. It seems that Lyme is more contentious than CFS. Makes me wonder more:

    I was diagnosed with Rocky Mountain Spitted Fever (RMSF) about 4 years ago. Had the spots, and associated symptoms. Was given doxy for a week, and felt sick as a dog, with sever cognitive aspects. At the same time of the RMSF diagnosis (unspecified tick-borne rickettsiosis , RMSF) they did a Lyme test. Lyme came back negative:
    *******************
    Lyme Disease AB, Quant, IgM < 0.91 Normal Range 0.00-0.90

    Note: IgM levels may peak at 3-6 weeks post infection, then gradually decline. FDA currently advises that Western Blot testing be performed following all equivocal or positive EIA results. Final diagnosis should include appropriate clinical findings and a positive EUI which is also positive by Western Blot.

    Lyme Ab IgM Iterp., EIA
    Lyme Ab IgM Iterp., EIA

    *******************
    So 3-6 weeks it needs to peak, but I had the test at time of onset of RMSF. I had continued to complain for two weeks after doxy treatment (total of three weeks), at which time the doctor told me to follow up with a psychiatrist, as I was obviously obsessing about how I felt. Nothing more to be done.

    Now, after four years, having shown brain inflammation on recent MRI, empty sella (crushed flat pituitary), and the psychiatrist, having run his gamut of medications then calling what I had CFS, and then the typical doctor mill, am wondering if it might be Lyme.

    I had a recent doc run another Lyme, Babesia, Bartonella, Ehrlichosis, and am waiting for those results. I wondered if these were enough tests, or if should see a LLMD?

    There are three that I am considering; two have indicated they use the IGeneX and clinical overview.

    I have read through many of the threads/posts on people who have the testing, but wondering if this is something that should be pursued more – for myself and everyone with CFS - and if treatment has worked/is working for anyone?
     
    taniaaust1 likes this.
  8. CFS-FIBRO-LYME

    CFS-FIBRO-LYME

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    A LLMD will be willing to treat with abx based on clinical symptoms. If you can find one where you live, it will make your life much easier and you won't get sent to a shrink for feeling pain "that shouldn't be there" but will actually get a medical response. It varies depending on doctor and area what you'll get. A positive Western Blot (WB) is icing on the cake.

    If you felt worse on doxy, likely a herxhiemer-jarish ("Herx") reaction and typical of Lyme and Syphilis. IV abx cause a far less severe herx than oral abx but depending on your health insurance are much more expensive...but the #1 treatment protocol.

    Does RMSF have a herx as part of abx? I don't think so but don't know for sure.

    Anytime you get one tick born disease (TBD), you should be checked for symptoms of all of the various co-infections. Most tests are crap for all TBD's right now, so a LLMD who can read and think for themselves and isn't afraid to do so is essential but rare.

    For Lyme, Igenex WB is more sensitive and looks for more immune system markers. I have tested positive by Igenex WB but never by IDSA approved crap WB.

    Look up Dr. Burrascano's Lyme guidelines for typical symptoms of the more common co-infections of babesia, erlichia, bartonella. Here's a site that keeps a link to Burrascano's guide in the bottom left corner:

    http://www.publichealthalert.org/

    Seeing you live in North Carolina, I'd look up the doctor who got sued by BCBS and is now practicing in S.C. as the N.C. medical board, employed by corpse-arations like BCBS took his license to practice in the state from him. He's in the Lyme movie posted above. Lyme brain prevents me from recalling his name at the moment. Edit: His name is Jemsek.
     
  9. CFS-FIBRO-LYME

    CFS-FIBRO-LYME

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    For those who want and are able to read and want to decide for themselves, here's a couple books:

    "Cure Unknown: Inside the Lyme Epidemic" by Pamela Weintraub
    "Lab 257 : the disturbing story of the government's secret germ laboratory" by Michael Christopher Carroll.

    For the Canada folks, you're not going to get any appropriate medical care from a socialist government. Even if you both had bulls-eye rashes, all the "classic" symptoms and a positive IDSA version of the Western Blot, they'd give you 2 or 3 weeks of oral doxy and proclaim you "healed" of Lyme regardless of your symptoms. And it's really the same world-wide with a few exceptions. Cattle get more abx in their daily feed for prevention that you can because it's too "dangerous" for you.

    The history of hamstringing the current Lyme Western Blot and leaving out intentionally the most important markers and watering down the tests ability to do what is purports to do is well documented and included in the first book.
     
  10. CFS-FIBRO-LYME

    CFS-FIBRO-LYME

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    Don't believe in a Western Blot which looks at immune system response and does not look for the actual spirochetes when Lyme is known to suppress the immune system?

    Here's two alternatives:
    • CD-57 test from Labcorp. (in US) that gives an absolute count. What it is and why it is tied to both Lyme and CFS as a marker for how well or sick you are can be found in back articles at www.publichealthalert.org or web search.
    • http://www.advanced-lab.com/ is marketing a new test that says they actually find the spirochetes or more accurately parts of spirochetes in blood. Too new for docs to say if they "believe" it or not.
    Isn't it great to live in scientific times that require so much blind faith and so little scientific proof that we all can "believe" in?
     
  11. Symptomatic

    Symptomatic Senior Member

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  12. CFS-FIBRO-LYME

    CFS-FIBRO-LYME

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    That's him.
     
  13. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    And: http://www.infectolab.de/index.php?id=40&L=1

    You can choose English on the home page. You can also get a kit from them and send blood.

    Sushi
     
  14. AFCFS

    AFCFS Senior Member

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    Looking for a Lyme doc can be like looking for a needle in a haystack. Jemsek got run out of my home state. I had called him in DC to check on prices and availability and never got a call back. I have found that some docs will give a determination based on a clinical view even if the labs show nothing. The rationale is - lets try a run of antibiotics and see if there is any change/improvement and go from there. There is such a variability in Lyme, possible co-infections, treating damage that is already done, etc. that often times the docs just like to have a positive test result so they might be able to cover their butts if a state medical board comes snooping around.
     
  15. MishMash

    MishMash *****

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    Mitt Romney (anybody remember him?) was a big proponent of Lyme disease syndrome. He was referring to the lingering CFS symptoms after one has been "susccessfully" treated with antibiotics for the initial bite. This is kind of a left-wing web site, so I was surprised they called the syndrome "quackery." I was surprised by the concern and compassion of Romney for these patients.

    http://www.slate.com/articles/healt...romney_campaign_pushes_medical_nonsense_.html
     
  16. AFCFS

    AFCFS Senior Member

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    Interesting article, with what seems like little substance beyond a rabble-rousing campaign tool, a few brief comments for thought, and a few links. Aside from the caustic political overtone the author may be a bit simplistic in logic, stating:
    Well, if her friend was not treated for severe depression then how does she know what it was? It could have been depression associated with the inflammatory response of Lyme, or other mechanism of action. And what of us who have traveled to many doctors, only to find the solution is not likely fully in their arsenal, but rather a patchwork approach?

    I come at his with a bit of discernment, as now in the wee hours of the morning, I realize I have been up (sitting in bed, walking to the printer) for the last 12 hours putting together my medical records - thick enough to require a table of contents (in the form of an overview), for a Lyme appointment, at least to get some moor eyes on whatever might be ailing me, perhaps a fuller picture.

    Two articles linked from the above article make for a pretty good read: Post-Treatment Lyme Disease Syndrome (CDC) and Death from Inappropriate Therapy for Lyme Disease (Clinical Infectious Diseases), which gives a corner case of one fatality, and states some interesting info, including:
     
    MishMash likes this.
  17. Paul M

    Paul M

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    Hey guys, I also just got diagnosed with lyme after a 5 month battle with what maybe is now lyme? Symptoms were muscle pain in the upper body, shoulders, arms back that got worse over the 5 months, overall terrible fatigue, sleep problems and immune dysfunction (had a sore throat for 8 weeks). I am skeptical of everything in general and try to learn as much as possible, so I'm trying to do that before I end up 6 months down the road on antibiotics. Any advice for someone in this spot? I was thinking I had CFS, but realize lyme can present itself similarly

    IgeneX WB IgG: 23-25 IND, 31+, 34 IND, 39 IND, 41+++, 58+, 83-93 IND
    IgeneX WB IgM: 31+, 34 IND, 41+
    IFA: 40, Equivocal

    Thoughts?
     
  18. vamah

    vamah Senior Member

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    You have 3 positive bands on the IgG, which means that lyme is very possible. My understanding is that the IFA is not a very useful measurement. Have you gotten a CD57 test? I got mine through igenex, but any regular lab can do that for you. If it comes back under 60, then in combination with the IgG I would say lyme is a strong possibility. CD57 is something that tends to be low in lyme patients, although other infections can do that also. For example, mine is 51, but my igenex lyme test was pretty clearly negative (you can never be completely sure with lyme).
     
    leokitten likes this.
  19. Paul M

    Paul M

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    My CD57 was 89
     
  20. vamah

    vamah Senior Member

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    Some people consider 60-98 to be borderline/inconclusive, others that over 60 is a good number. So I'm not sure what you should think. You may want to consider antibiotic treatment, but I wouldn't recomend doxycycline because new research indicates that that might exacerbate low-level chronic lyme. My friend with chronic lyme is on a new antibiotic regimin that is supposed to work well, but can't remember the name of the drug right now. I will try to find out and get back to you.
     
    leokitten likes this.

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