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Have you been properly tested for Lyme poll?

Discussion in 'Lyme Disease and Co-Infections' started by loayachil, Jan 23, 2013.

?

Have you been tested for Lyme, its co-infections, and what was your results?

  1. I have never taken a lyme test

    26.2%
  2. I have only taken the basic lyme test and it was negative

    29.5%
  3. I have only taken the basic lyme test and it was positive

    6.6%
  4. I had a negative basic, and went for better testing (ie Igenex) and received another negative

    9.8%
  5. I had a negative basic, and went for better testing (ie Igenex) and received a positive

    26.2%
  6. I had a negative basic, and went for better testing (ie Igenex) and received a positive co-infection

    13.1%
Multiple votes are allowed.
  1. roxie60

    roxie60 Senior Member

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    Central Illinois, USA
    IGenex test results 11/2013

    IFA, B Burgdorferi G/M/A <40 Negative
    Lyme IgM Western Blot
    IGenex IGM result - Negative
    CDC/NYS result - Negative
    18 kDa -
    **23-25 kDa -
    28 kDa -
    30 kDa -
    ** 31 kDa IND
    ** 34 kDa IND
    ** 39 kDa -
    ** 41 kDa IND
    45 kDa -
    58 kDa -
    66 kDa -
    **83-93 kDa +


    Lyme IgG Western Blot

    IGenex IGM result - Negative
    CDC/NYS result - Negative
    18 kDa -
    **23-25 kDa -
    28 kDa -
    30 kDa -
    ** 31 kDa -
    ** 34 kDa -
    ** 39 kDa -
    ** 41 kDa +
    45 kDa -
    58 kDa -
    66 kDa -
    **83-93 kDa -


    Multiplex Borrelia Burgdorferi Serum
    Genomic Bb - Negative
    Plasmid Bb - Negative

    Multiplex Borrelia Burgdorferi Whole Blood
    Genomic Bb - Negative
    Plasmid Bb - Negative
    Last edited: Nov 8, 2013
  2. vamah

    vamah Senior Member

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    Pretty similar to mine: 2 positives and a few indeterminates. It looks pretty negative. Someone else might be able to tell you if your positive bands are very significant ones or if they are ones that cross react with other bacteria. I think I remember that 41 can cross react. You should probably concentrate on looking at other things, like viruses.
    roxie60 likes this.
  3. roxie60

    roxie60 Senior Member

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    Central Illinois, USA
    @vamah I agree it 'looks' negative. But I thought there were other folks here that took the IGenex test and might have some input on is this a case of a negative really being a positive (in other words INDs are not negative). I really wish the results had been more clear. It just perpetuates confusion when they say an IND can be clinically significant. I'm sure you can relate.

    I'm certain all my company would see is it's NEGATIVE. It is a midwest company and I would not expect them to have any or much experience with Lyme diagnosis. I'm sure all they will see is what my doctor saw - its NEGATIVE.

    That is why I am considering doing an antibiotic challenge but I think it should be under the care of an LLMd. I'm sure my GP would agree but I have no idea what abx to start with. I already have tinnitus so dont want one that will agravate that symp. Stomach is already quezy so want to be careful with that.

    I'm getting feedback on other forums and many feel my results indicate I have Lyme in their opinions. Apparently some others also had intial tests that were negative but then took abx and retested and then results were positive. Supports the theory that if you have had untreated Lyme for a long time that you immune system is too compromised to produce antibodies and that the Lyme has changed form so harder to detect.

    I am learning so much but still not confident enough to say I have Lyme. Really considering the antibiotic challenge.
  4. roxie60

    roxie60 Senior Member

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    @vamah anything with ** next to the band IGenex considers specific to Lyme. Not sure if you noticed that note in your results.
  5. vamah

    vamah Senior Member

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    Washington , DC area
    @roxie60 I did notice about the double stars later. All my positives and indeterminates are in double starred bands. I agree with everything you said about why a negative may not be a negative. I worry about that too and am considering an antibiotic challenge.

    Thing is, I have already spent so much on tests, I don't know that I can afford another test from a specialty lab and don't really see the point of getting a standard lyme test. I have also made myself crazy about so many tests lately, I honestly don't know if I can take it mentally and emotionally.

    Haven't been able to talk to my lyme expert lately (not a doctor, a researcher) so would be interested in what he has to say. He is the one who told me I should consider the test negative (and if he said that, it really means something), but also said I should consider retesting in a year.

    I am just too confused to make a decision about anything right now.
  6. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Albuquerque
    Won't your insurance cover another "good" test after an antibiotic challenge?

    Sushi
  7. roxie60

    roxie60 Senior Member

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    I completely understand @vamah , I'm also reluctant to keep paying for these expensive tests ..... I understand the emotional toll as well. I am at the end of my rope as well. But I am trying to get as informed as possible and I am finding so many people telling me that my IGenex result should be considered positive for Lyme given the bands are ** (double starred) and a long history of symps and misdiagnoses, even though is 'says NEGATIVE'. I dont want Lyme but like so many here I want answers so I can try to get my life back.

    I wonder what makes your friend a Lyme expert? Not meaning to be disrespectful, just concerned for you and I know how important is is to get good , useful, accurate answers so we can figure out how to get better.

    Confusion is just another torment of chronic illness that few seem to understand much less offer encouragement. I know how easy it is to get mentally overwhelmed trying to understand all this and determine what applies to each of our situations.

    Hang in there, take a break, give yourself some rest. I have found a number of online references thru Google regarding IGenex results and negative not being negative. There is a lot of confusion out there, you are not alone.
  8. vamah

    vamah Senior Member

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    Washington , DC area
    My old insurance didn't cover the first test. I have know idea if my new insurance will cover another one?
  9. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Albuquerque
    Medicare covers Igenex and that sometimes sets the standard for payment.

    Sushi
  10. vamah

    vamah Senior Member

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    Washington , DC area
    That's good to know, thanks. My insurance seems to cover whatever my doctor says is necessary. I will have to call and find out. Had kaiser before. They don't cover anything not done at kaiser.
  11. Aerose91

    Aerose91 Senior Member

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    @vitamink

    Did you have a SPECT and/or EEG? I have had both and EEG showed significant slowing and my SPECT was horrible, ill post the results if you'd like.

    I ask because I need to get further tested for Lyme and co-infections. The doctors know my ME started from encephalitis but now diagnose me with "toxic encephalopathy of unknown origin" because of my very severe psychological problems and severity of my SPECT. I have fatigue, too but it's far from my worst concern.
    I'm curious what someone who tested positive for lyme's SPECT looks like ... or EEG
  12. roxie60

    roxie60 Senior Member

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    An LLMD has now offered opionion based on IGenex Negative test results and CD57 - says due to bands that are '+' and IND she suspects Lyme infection. Now on 3000mg/day of Amoxy
    golden likes this.
  13. golden

    golden Senior Member

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    Clear Light
    thats great news :)

    i have been really hoping you get somewhere as you so courageously pushed for tests.

    i hope the treatment is swift and straight forward.

    Golden
    roxie60 likes this.
  14. vitamink

    vitamink

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    NYC
    sorry for the late reply. i had a spect done- it showed a moderate decrease in cerebral cortical perfusion in a heterogeneous pattern. what were your results?
  15. Aerose91

    Aerose91 Senior Member

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    No problem, thanks for the reply. This is what they wrote up in my SPECT report

    1: Decreased tracer activity in the left and right inferior orbital prefrontal cortex seen at rest.


    2: Decreased left and right temporal lobe tracer activity seen at rest.


    3: Decreased parietal lobe tracer activity seen at rest.


    4: Decreased left and right lateral prefrontal cortex tracer activity seen at rest, and decreased left and right prefrontal cortex pole tracer activity seen at rest.


    5: Mild scalloping seen at rest.


    6: Brain trauma. A combination of findings suggests past brain trauma. These findings include:

    - Decreased prefrontal pole activity

    - Decreased temporal lobe activity

    - Decreased parietal lobe activity

    - Decreased left and right occipital lobe activity

    - Decreased dorsal prefrontal cortex activity.
  16. Valentijn

    Valentijn Activity Level: 3

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    Amersfoort, Netherlands
    My vote should change (but can't) - I went from "tested negative on a basic test" to "tested negative on a basic test and positive on a better test".
  17. Aerose91

    Aerose91 Senior Member

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    I have a question. I tested negative on a basic test but my doctor is considering doing a more advanced test. However, ive been on Valcyte for about 5 months and ive seen some improvement in my OI and a reduction in PEM effects- no progress on my baseline though. My HHV-6 titers werent even very high. Does my having seen some benefit, albeit small, from Valcyte give reason to believe Lyme or a co infection isnt the cause?
    Last edited: Feb 14, 2014
  18. MeSci

    MeSci ME/CFS since 1995; activity level 6

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    Cornwall, UK
    I'm too late to vote in this poll, but I don't think I've ever been tested for Lyme. I've probably had plenty of opportunities to catch it, having spent a lot of time in the countryside including moorland and the New Forest, and my cats have had several ticks.

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