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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. loayachil

    loayachil

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    Around 10 years ago, I had gone for a Lyme test, which came back negative. I had even asked my doctor for the more advanced one, which he waved his hand.

    I recently (because of Phoenix Rising) took the Igenex test which returned with a multi-positive. According to Wikipedia there have been many fights between the cdc and iliads, where they have sued each other, and as such the cdc refuses to acknowledge what the lyme doctors are saying (sounds familiar).

    However, I think it is worthwhile to ask yourself, have you been tested, and have you been tested properly. While there are many false positive, I believe the regular tests are 40% inaccurate, and if you have been suffering from "brain fog", headaches, etc.. isn't it worth while to double check.

    Please take this poll, and maybe it will shed some light.
    (Also, I wonder if lyme should get its one section, as so many seem to have it to some affect)
  2. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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    Not sure what my results ere with Igenex. I think 2 doctors have seen it, most recent 1 I have been seeing for 4 years now, and am doing better than ever in my 10 years of illness. I thought I had a couple of bands? So not sure if that would be "negative" or a "positive co-infection"?

    GG
  3. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Hi,

    I think these are good questions to ask as Lyme testing has improved a great deal in recent years. But while the Igenex test is a step up, it still (according to JOSEPH J. BURRASCANO JR., M.D) only 50 - 70% accurate. Now there are better tests such as http://www.advanced-lab.com/spirochete.php which is a culture test, not an antibody test.




    There are also other companies offering similar tests. I wonder if you could incorporate these other testing possibilities int your poll--as I am not sure what a "basic test" is. And, though I have taken the Igenex, the results are still not clear so I plan to take a culture test and then genetic sequencing--so at this point, I cannot take the poll

    Best wishes,
    Sushi
    beaker likes this.
  4. loayachil

    loayachil

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    Thank you Sushi,

    I'm not exactly what defines the "basic test", but I was referring to the kind that a primary often gives (usually labcorp or quest) that will only return a positive if it is cdc positive, which means that five bands are positive, something that is heavilly argued against by ILIADS doctors and many patients.
    You are right that there are more tests, and the tests are starting to test more than just antibody bands. I just meant a test that is more precise, as by myself, and so many others in the forums, once the basic lab says negative, it is pushed to the corner and never addressed again.

    Lo
  5. peggy-sue

    peggy-sue

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    My gp refused me a Lyme test on the grounds that I did not have evidence of a tick bite.
    However, I did spend a lot of time up in the hills, camping and walking and loads and loads of sheeps were about
    You get bitten by all sorts of things in these places.
    I've not been tested for toxoplasmosis either, although I've been emptying cat boxes for 40years. My gp just dismissed it as a notion.
  6. SusanB

    SusanB

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    DFW
    Hi loayachil,

    There is one category familiar with Lyme patients that you left out. It the "equivocal" result from Igenex. Equivocal means that there are not enough bands for CDC and too many bands to completely rule out Lyme. ILADS doctors go by clinical signs and don't rely on the those tests alone.

    There are many reasons why the tests could show equivocal. So far, there are over 30 strains of Lyme and Igenex does not test for all of them. One might have a strain that is not being tested. The immune system can be suppressed. And so forth. The same can be said of other tick-borne diseases like Bartonella and Babesia.

    I had a tick bite with the bullseye rash, but the doctor wouldn't test me. 7 years later, a doctor finally recognized some of my symptoms (a red flag is antibiotics making one "herx" like it did me) and tested me, My results were equivocal from Igenex. A bullseye rash is considered a clear case of infection and I should have been treated by the very first doctor I saw. Many people do not ever see the bullseye rash (it may be in a place they cannot see), but they end up with one or more of the tick-borne diseases.

    Hope this was helpful,
    Susan
  7. SusanB

    SusanB

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    P.S. The "basic test" is the Elisa and Western Blot. Many doctors won't run both tests, so that makes the test results even more questionable.
    beaker likes this.
  8. SusanB

    SusanB

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    P.S.S. Lyme disease is a spirochete and a cousin to syphillus. Both diseases are Spirochetes. Both diseases are well known to cause herxheimer reactions in the patient when being treating with antibiotics - especially if one has had the disease for a long time and gone untreated. Prior to getting Lyme disease, I never reacted to any medications. But after getting hit by a number of tick bites and living in a mold home at the same time, I react to so many things now: medications, supplements, chemicals, foods...
  9. soxfan

    soxfan Senior Member

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    I wouldn't even bother with any testing...I have had 3 Lyme tests from Igenex in the past 4 years and on every single one of them I had 41+++ on IgG and each test had different IND bands. I would say all together I had a total of at least 12 different IND. So that tells me the testing is not all that reliable....I want to add I had 2 postitive ELISA even though I know that is even less reliable....

    I think but am not certain that many people get alot of IND on their tests but not alot of postitives which to me leaves a person even more confused like I am!
    CallieAndToby likes this.
  10. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Yes, loayachil, this is the kind of result I had from Igenex, so I can't take the poll. Is there a way you could alter the poll to include more possibilities so that more people could take it?

    Sushi
    merylg likes this.
  11. svetoslav80

    svetoslav80 Senior Member

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    Bulgaria
    What do you mean by "regular" test. There are generally 3 types of lyme testing available. (I don't count culturing borelia test because it has not been confirmed as reliable). These are ELISA, Western blot and PCR (ordered by price). Some laboratories make ELISA as a first test, and some make Western blot as a first test. Both these tests test for antibodies of the bacteria. ELISA is a test with big sensitivity, so if you make it, and it gives you a positive result, don't panic. Chances are that antibodies from another pathogen have cross reacted and you have a ... false positive. Then it's worth to make the Western blot which also tests for antibodies but is more accurate. What if you get a negative result on ELISA? Then there are 2 possible answers:
    1) you may not have enough antibodies due to ... making the test too early / too late / have taken antibiotics before the test / your body just don't produce enough antibodies
    or
    2)you don't have lyme

    There is no logic that you do ELISA and it gives you negative, and you do Western blot and it gives you a positive result, considering that you make these tests at the same time.
    And there is also the PCR test which tests for DNA of certain strains of the bacteria. Because of this, there are speculations that you might have been infected with another strain (which the test don't catch) so you might get a false negative, and, on the other side, this test often gives false positive results.
    merylg likes this.
  12. SickOfSickness

    SickOfSickness Senior Member

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    I had the Igenex which says negative, but I think I read LLMDs should reinterpret the results. Like with thyroid and research finds that other tests need better sensitivity. The lab sets a cutoff and says you're negative if you are below that cut off, but an LLMD would say, no, the cutoff should be lower. The LLMD would consider your symptoms and diagnose it if you are in a range of uncertainty. I never saw an LLMD. I am not sure what to believe now, because I think some LLMDs diagnose too easily too.

    I feel getting a Lyme diagnosis would be more good than bad, but I am sure it would bother me to get diagnosed.
  13. CallieAndToby

    CallieAndToby Senior Member

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    I went to see two llmd's and they were both shady so I gave up. They did their "own" lab corp testing but after I looked it all up, very controversial. I was basically diagnosed b/c of a very low CD57 but I never did get igenex. After contracting severe C-diff from antibiotics, I was done. The lyme doctor also kept bringing up mold and saying "well I think mold is actually the problem" after I got c-diff. I agree with the person above me, I don't think they diagnose accurately and I didn't trust the two I saw.
  14. CallieAndToby

    CallieAndToby Senior Member

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    It's confusing and not reliable and I think a lot of supposed lyme md's are out to make money and shyster people. What I find puzzling is that they tested a 5,500 year old frozen corpse and say this man had lyme yet they can't test us living folks?? Something fishy about that.
  15. loayachil

    loayachil

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    I was wondering about the iceman also, although my guess is 1) it is a lot easier when everything is frozen and not moving around, and 2) scientist's egos are more precious and worthwhile then the pains of people.

    Concerning Sushi and other responses, yes the poll was partially premature, as there are more options (which I am trying to figure out how to add) as well as more testing knowledge. I am just pointing out that there are more tests and a possibly different cut-off point then what the cdc has to offer.

    I dont think that most llmd's are Shysters. Although are sure there are some. We dont have the answers to many diseases, such as obviously cfs, me, ibs, etc, just as 50 years ago we misunderstood asthma, ulcers, and a hundred years ago we didn't know much. For me it makes sense, as I went hiking often, grew up in Maryland, and went down in April-June. According to what I have started reading some of the co-infections can cause the body to not be able to remove mold toxins, and even if that was not the case, there are multiple detoxes for mold and other detoxes that can be used together or separately from a lyme regiment.
  16. svetoslav80

    svetoslav80 Senior Member

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    Positive Band 41 tells you that you have been infected with bacteria, which has flagella, not that you have Lyme disease. Example of such bacteria is H. Pylori, which has infected half of the population on Earth. That's why half of the population have band 41 positive on Western blot ... Even some E. Coli strains have flagella. IND bands mean nothing. Stop with this Lyme paranoia. I'm sure that the percentage of people here who actually have Lyme is very small.
    August59 and soxfan like this.
  17. ukxmrv

    ukxmrv Senior Member

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    I've only had a basic test on the UK NHS. This is probably worse than useless of course.

    Not bothered with paying for further more reliable testing as I have asked myself "what would I do differently" with it. Over the decades I've already tried many of the treatments currently used for Lyme with no improvement in my ME symptoms.

    I would look at it again of course if something new was discovered that would lead to new treatments that long term sufferers reported as working. It's just a question of priorities.
    Tito, beaker, soxfan and 1 other person like this.
  18. peggy-sue

    peggy-sue

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    Sorry, svetoslav, I do not think "very few folk" who have the label ME/CFS (or whatever other label it gets) have Lyme.
    I suspect the proportion of folk with Lyme might be quite high.
    The problem is that the tests are unreliable, probably expensive - particularly if you want a reliable one, and doctors have this convenient label to put on folk to make them go away.
    A good friend of mine in Eire seemed to be getting ME - her husband, however, has some clout in the medical establishment and she did get properly tested - and she did have Lyme, she was diagnosed nice and early and has been treated and is now almost completely well.
    She only lost about a year of her life to illness. She's out running again - her favourite hobby.
  19. CallieAndToby

    CallieAndToby Senior Member

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    I did antibiotic treatment for about a year until I got really bad C-diff and I never saw any improvements. Is this normal? Just wondering. I didn't mean that all LLMD's are shysters, but the two I saw certainly were. One diagnosed me on my first visit without running any labs based on my "tongue and finger nails" and wanted to do really weird stuff that seemed quackery to me and my R.N. mother and to science.
  20. soxfan

    soxfan Senior Member

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    I agree totally that the IND means nothing. I think Igenex is confusing alot of people who come up with IND on their testing reports because a doctor will tell them that means they "maybe" saw something which "maybe" could be Lyme. I have been on the Lyme boards long enough to know that most of them believe an IND on any of the Lyme bands means you have it.
    I do live in an area where there are alot of ticks but it doesn't mean we are all contracting Lyme. I was bit again this summer in NC and did end up with a bulleye on my back. I even was smart enough this time to take photos to show the doctor.

    It is also true about the 41 band which many people think is the first to show in a Lyme infection with is totally false. I went to one of the very well known LLMD in New York and he said band 41 doesn't mean Lyme at all. True just about anyone who is tested comes up with this band. Even my sister who has MS came up with 41.

    I was in Lyme treatment off and on for almost 5 years and saw little improvement. I actually feel now I am worse off then when I first became ill even with all the abx I was on. I obviously didn't have Lyme....but sadly even the great doctor in NY treated me for 2 years without even a close positive test.

    The testing is horrible and just makes patients even more confused then ever because on one hand the doc says get tested but when it comes back negative they say well....the testing really isn't all that accurate so we will treat you anyway.
    After all my testing I feel it is just a big scam and these labs are raking in alot of money for testing that is worthless.
    I know some people do get very postive tests but most get a bunch of IND and band 41. I am not sure why that is either.....

    I would love to be able to run again....
    CallieAndToby likes this.

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