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Just found out I have active lyme disease. I am stunned. Help!

Discussion in 'Lyme Disease and Co-Infections' started by lizw118, Jun 17, 2012.

  1. Lotus97

    Lotus97 Senior Member

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    I have problems with both Lyme and mercury toxicity. I was concerned about taking NAC because it could lead to elevated levels of Cysteine for people with mercury. Now I don't know if my levels are too high or too low. Is there anything I can do other than getting my Cysteine levels tested on a regular basis?
  2. Lotus97

    Lotus97 Senior Member

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    Do you know what the relationship is between Lyme and mercury/metals? I suspect I'm having similar problems with both and have been coming across information suggested they could be related such as this:

  3. brenda

    brenda Senior Member

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    Sorry I missed a question - I have been rifing and using Samento. Breakspear want to give me cetrifiaxone via a port.
  4. Mog

    Mog

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    Further to the Western Blot results I posted above, I've just got results back from InfectoLab. Looks like I definitely have Borrelia, Chlamydia pneumoniae, Mycoplasma and Ehrlichia/Anaplasma. The only one I don't have is Bartonella :( . They didn't test for Babesia.
    Any comments on the results please? How do I proceed from here?

    Borrelia burgdorferi Elispot LTT Results Units Reference
    Borrelia burdg. Fully Antigen +3 SI <2
    Borrelia OSP-Mix (OSPA/OSPC/DbpA +7 SI <2
    Borrelia LFA-1 1 SI <2

    The results of the Elispot-Lymphocyte-Transformation-Tests are an indication for an actual cellular activity against Borrelia burgdorferi.

    Chlamydia pneumoniae antibodies
    Chlam. Pneum. IgG antibodies (ELISA) 0.2 Ratio <0.8=neg, >1.1=pos
    Chlam. Pneum. IgA anitbodies (ELISA) 0.1 Ratio <0.8=neg, >1.1pos

    The specific Chlamydia pneumoniae IgG and IgA antibodies are no indication for a humoral immune response against Chlamydia pneumoniae. Please look at the Chlamydia Elispot LTT for the actual cellular activity.

    Chlamydia pneumoniae Elispot LTT +15 SI <2
    The result of the Elispot-Lymphocyte-Transformation-Test (LTT) is an indication for an actual cellular activity against Chlamydia pneumoniae.

    Mycoplasma pneumoniae antibodies

    Mycoplasma pneumoniae IgG (EIA) +1.0 Ratio <0.8=neg, >1.1=pos
    Mycoplasma pneumoniae IgM (EIA) 0.2 Ratio <0.8=neg, >1.1=pos
    Mycoplasma pneumoniae IgA (EIA) 0.2 Ratio <0.8=neg, >1.1=pos

    The specific M pneumoniae IgG antibodies are an indicationf for a borderline humoral immune response against Mycoplasma pneumoniae.

    Bartonella antibodies
    Bartonella henselae IgG IFT <1:64 Titer <1:64
    Bartonella Quintana IgG IFT <1:64 Titer <1:64

    Serological no evidence for an infection with Bartonella henselae or Bartonella Quintana

    Anaplasma phagocytophilum antibodies
    Anaplasma phagocytophilum IgG antibodies <1:64 <1:64
    Anaplasma phafocytophilum IgM antibodies <1:20 <1:20

    No serological evidence for an infection with Anaplasma. Please look at the Ehrlichia / Anaplasma Elispot LTT for the actual cellular activity.

    Ehrlichia / Anaplasma Elispot LTT +18 SI <2

    The result of the Elispot Lymphocyte Transformation Test is an indication for an actual cellular activity against Ehrlichia / Anaplasma.

    C reactive protein (CRP) 0.2 mg/l <5

    Anti Nuclear Antibodies

    ANA (EIA) 0.39 Ratio <1.0

    Included are auto-antibodies (IgG) against the following antigens: Chromatin (dsDNA, Histones), Sm/RNP, SS-A, SS-B, Scl-70, Centromer, PCNA, Jo-1, Mitochondria (M2), Ribosomes, nuclear extracts. There is no evidence for antinuclear antibodies.

    CD 57 Flow Cytometry

    Leucocytes 5.15 tsd/ul 4 - 10
    Peripheral lymphocytes 30.10 % 18.0 - 51.0
    Lymphocytes 1550 /ul 468 - 5100
    Natural killer cells 10.19 % 6 - 29
    Natural killer cells 158 /ul 60 - 700
    CD 57 positive NK cells 0.77 % 2 - 77
    CD 57 positive NK cells 12 /ul 100 - 360

    The CD 57 cell count is an indication for a chronic immune-suppressive situation caused by Borrelia burgdorferi.



    Valentijn likes this.
  5. Ema

    Ema Senior Member

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    Has your doctor recommended antibiotic treatment?

    I would also consider testing your Immunoglobulins, total and subclasses especially if you have tested positive for viral as well as bacterial infections. This testing seems to be overlooked in many cases and replacement (IVIG/Hizentra) can really help to make a difference.

    Ema
  6. Mog

    Mog

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    Thanks Ema,
    I'm waiting to hear the doctor's recommendations. I don't know whether to start herbals myself, or whether I could do more damage that way, by driving the bugs further in. I suspect I'd be better to start with abx, then add herbals later. I don't really know.
    I had immunoglobins tested last year. I had low IgA. IgG and IgM were within range, but only just. Does IVIG/Hizentra help the low IgA? EBV showed up in my tests last year also.
  7. Mog

    Mog

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    Now somebody has questioned the validity of the tests as a means of diagnosing Lyme :( I thought they were sound enough.
  8. Ema

    Ema Senior Member

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    All Lyme tests have limitations but you've had good testing and both times have gotten positive results. If you have Lyme symptoms, that is enough for a clinical diagnosis and antibiotic treatment in my opinion.

    My total IgG was in range but barely and I had two low subclasses which was enough to get me on Hizentra. With low IgA and low IgG, I would consider revisiting this. Many people I know with Lyme also have immunoglobulin deficiencies. I think treating those can help too.

    I wod personally wait on herbals and start on antibiotics first though I know there are lots of people that do well with herbals. I just think the herbal protocols are so complicated and expensive and they both should do the same thing.
  9. Mog

    Mog

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    Thanks very much Ema.

    I will note that about treating the immunoglobin deficiencies. I probably would want to start on abx first if I can.

    Somebody has suggested that the Bartonella antibodies test wasn't conclusive at ruling out Bartonella, because antibodies were low in all the tests Could that be right? And how could I then find out if I do have Bartonella?
  10. Ema

    Ema Senior Member

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    My opinion is that if you have symptoms of Bart along with a positive Lyme test, you should be treated for Bart as well despite what the testing says since they occur together so often. Rifampin is commonly used for Bart.

    Ema

    \
  11. Mog

    Mog

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    Okay, thanks again. Thought I'd managed to at least rule out Bartonella but maybe not :( . Does it require its own abx, Rifampin that you mentioned, or will the other Lyme abx treat it as well?
  12. snowathlete

    snowathlete

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    If you have Bart symptoms then you need a better test. The test you've had has ruled out two of the most commonly diagnosed species but there are lots of species and more are found each year. There are only a few labs that test for the majority of them. As with infectolabs test for Lyme, they are not FdA approved. Doesn't mean they are bad tests, but it means you don't know for sure, so you'd have to reach your own conclusion as I did.

    If you had Bart then there are several abx that have been shown in studies to be effective. Rifampin is one of the best it seems but cannot be used in mono therapy as Bart becomes revisitant. I am on rifampin and telithromycin for instance, but there are lots of combinations available. Some also work on Lyme, to varying degrees.
  13. Ema

    Ema Senior Member

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    I have read of people using azithromycin but that seems to be less common than the Rifampin.

    Levaquin is also used as well but it is in the more problematic category of fluoroquinolones which may cause tendon damage in some people.
  14. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Have you had a PCR test for Bartonella? It is hard to find in blood but worth a try.

    Sushi
  15. roxie60

    roxie60 Senior Member

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    I am trying to now educate myself on Lyme Disease since that is now suspected. Dr wants me to take Igenex Lyme Panel (#6050). My question is why do that test and not the others like 5080 or 5085 which seems more comprehensive or 5090 and/or 5095. How do I know which test is appropriate. We are just taking the next step after the CD8-CD57 results were LOW. Thx
  16. PhoenixBurger

    PhoenixBurger Senior Member

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    I do not trust these "alternative" labs nor the doctors who peddle them. At all. Sorry. Went down this path and it is wrought with scam artists claiming to be LLMD's. people taking out 2nd mortgages on their homes, testing completely negative at Labcorp and Quest, only to test completely positive at the "other labs", while conspiracy theories fly around about how Labcorp and Quest are "testing incorrectly". The whole scene is a monstrous mess of nonsense, monstrous doses of antibiotics that damage the body (conveniently labeled "herxing"), insanely high office visit fees (cash only of course), and tens of thousands of dollars in products "needed" to kill the Lyme and coinfections.
  17. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    I don't know the numbers of the tests but I'd get the one with all the co-infections.

    Sushi
  18. roxie60

    roxie60 Senior Member

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    Figures that is not the one the doctor is requesting. Is this just a scam to take sick people's precious money? The test I believe she is going for is #6050 which includes Lyme IFA, IgM and IgG Western Blots and PCRs for Borrelia. The other tests are called complete and test for other things except Borrelia. Why in the balze dont they have one friggen test to test for them all???? My doctor has admitted I will be her first patient she diagnosed with Lyme if this test comes back positive. She admitted she is not familiar with Lyme. I like my GP but I would goto other specialists if I could trust they really kenw what the blazes they are doing and stop treating labs and treating me as a lab rat.
  19. roxie60

    roxie60 Senior Member

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    just starting research but this is scary stuff.
  20. Ema

    Ema Senior Member

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    IgeneX is a very reputable lab. I don't think it is a scam.

    I think there are two ways you can go with testing. You can test everything under the sun upfront or you can just do the Bb Western Blots and see if they are positive. They hold onto your blood at the lab so if those come up positive, you can call them and have them add on tests for the coinfections (double check that they still do this though).

    My doctor ordered the WB's for me - #188 and #189. The cost was about $160 which is much more affordable than the full panel.

    There is also some overlap with the antibiotics used for Lyme and the coinfections so some doctors may choose the appropriate antibiotics based on the clinical symptoms (Bart and Babs have some common typical symptom profiles).

    Ema

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