ImmunoSciences Test

Discussion in 'Fibromyalgia Main Forum' started by Slayadragon, Apr 11, 2007.

  1. Slayadragon

    Slayadragon New Member

    Hi All,

    Today I spoke briefly with Dr. Morris Papernik, whom I think of as my "regular non-emergency internist."

    He is a well-respected general internist from a good hospital (Rush). He uses standard medical treatments (e.g. pharmaceuticals) in his practice.

    Dr. P has an interest in CFS and is used by the three Chicagoland patients I know are on this board (deliarose, cherylsue and me). He knows a great deal about CFS and attended the Florida conference in January.

    During my visit, I showed him my ImmunoSciences test results (Rnase-L activity, apoptosis, NK Cell activity and interferon alpha serum). The test had been ordered by my CFS doctor (Dr. Dale Guyer), but Dr. P previously had asked to see them.

    Dr. P seemed impressed with the test results (which show extremely strong immune system dysfunction). "Well, look at that!" he exclaimed.

    He showed no skepticism whatsoever about the accuracy of the test results or the quality of lab doing them, and went on to tell me what each of the measures suggested. This is despite the fact that he has shown significant skepticism about other sorts of lab tests, included those of Genova/Great Smokies.

    This seems to me significant for a couple of reasons:

    * Based on his comments, it seems that the tests are valuable with regard to determining whether a patient has significant viral problems due to a dysfunctional immune system. This is important since results of other tests (such as those for individual viruses like EBV, CMV and HHV6) have been debated in terms of their importance.

    * This is a very simple test to read and understand. Whether you've got a problem--and how bad the problem is--is quite clear.

    My hope is that within a couple of years, this test (or one similar) will become standard. If that were to occur, then CFS patients (or at least the segment who have viral problems) would have a much easier time getting through channels to get decent care and (when applicable) get approved for disability benefits.

    I personally have found that none of my physicians (including those who have nothing to do with CFS) have dismissed the results of this test. Some have stated that they didn't understand it fully (as would be expected!), but I've gotten a lot more credibility from all my doctors since I've started bringing it to appointments.

    Finally, for those considering antiviral treatment, this seems a useful test to run. (My CFS doctor thinks it's so useful that he didn't bother with individual viral panels, which he does not find predictive of patient results.) As Dr. P and I discussed, the amount of viral problems shown on the test might suggest whether an antiviral might be appropriate at all, the strength of the antiviral dose or type of antiviral that might be best, and the amount of time/difficulty that might be required before results are seen.

    I've found this test the most helpful thing I've done with regards to understanding my health situation during the entire 10 years I've been sick. I thus thought that others might want to put some thought into getting it done also.

    Best, Lisa
  2. cherylsue

    cherylsue Member

    Thanks for sharing. I found it most interesting. Did Dr. P. have any additional suggestions or did he just encourage you to keep up what you are doing?

    Dr. P. was never interested in doing tests for individual viruses although we discussed it. He said the treatment would be the same. I am so glad he attended the conference in January. I was wondering about that. If I still had my old insurance I would go back to him and get the Immunosciences test. My HMO doctor could order it, but it would be out of pocket expense. I don't think she would know what to do with the results.

    What, if any, suggestions did Dr. P give you? What did each of the measures suggest?

    Thanks for you input.

    CherylSue

  3. roge

    roge Member

    thx Lisa!

    already had confidence myself in this lab and these tests, but glad you shared what you did with us, give us even more confidence knowing Dr. P not only didn't poo poo them but seemed impressed with them.

    as for me, been sidetracked last few weeks with bad flare but i still plan on getting some more immune tests likely at immunoscience, but i see my ID dr. this friday and gonna see what he can do , even if just to order me a lymphocyte sub pop analysis to start based on my low lymphocyte count. I also wonder if my PCR for parvo B19 will be known? I will also get my ACTH stimulation tests results back. I suspect both the PCR for Parvo and ACTH will be negative but you never know I suppose.

    by the way, did you ever receive thier CD?, it has lots of information on immunity on it.

    peace
  4. pw7575

    pw7575 New Member

    Thank you for posting this Lisa. I have been wanting to get this test done for a while now but was worried that many have said it costs $500-$1000. I certainly don't have that much money.

    Did your insurance cover your tests? I really would like to have this done especially with the response you have gotten from your doctors.

    Thanks!
    Pam
  5. Slayadragon

    Slayadragon New Member

    Apparently Immunosciences is now running a whole bunch of tests for people with CFS. Swedeboy got all of them done (or at least all the ones available in January or so), and I think the cost indeed was around $1000.

    However, the four tests I mention above are available on their own. Forebearance got her results back last week. You can read about her results in her status report, called something like "Continuing the Experiment with Anti-Viral Enzymes (7)". (Her results were fairly similar to mine, demonstrating clearly severe viral/immune problems.)

    The test was about $500 when I had it done last summer. Forebearance said that her cost was more like $375.

    As with every other lab test I've had run, my insurance paid for practically all of this one. Obviously I have very good insurance, though.

    I had forgotten to ask for the Immunosciences CD. Thanks for the reminder!

    Best, Lisa

    [This Message was Edited on 04/11/2007]
  6. zipk

    zipk New Member

    Hi Lisa:

    Would you please post your Immunosciences lab results? I haven't had a doctor interpret mine, so I'd love to compare.

    Thanks,
    Zip
  7. Slayadragon

    Slayadragon New Member

    Hi Zip,

    Have you had the test done yet? If so, please post your results!

    I am posting mine here. In addition, since Forebearance seems eager to have feedback on hers, I'm going to copy them from her original post to here.

    By the way, Forebearance says that this group of tests is now called "Molecular Biology of CFS" by ImmunoSciences. (When I got it done, it was just "CFS.")

    Best, Lisa

    **

    MY RESULTS (August 2006)

    INTERFERON ALPHA-SERUM
    This suggests presence of viral load in the body. Interferon Alpha alerts the rest of the immune system that viruses are present and that it thus needs to become more active.
    NORMAL LEVEL: Less than 12.5
    MY LEVEL: 412.0
    (Yes, these are the right numbers. Approximately 40x the high end of the reference range. This means that I have an extremely large number of viruses present.)

    NK CELL ACTIVITY
    Measure of activity of Natural Killer Cells, sort of similar to T-cells. Some viruses--notably herpes family viruses--can be killed only by NK Cells; T-cells are ineffective. (Rnase-L kicks in as a last resort.) In Japan, CFS has been known by the name "Natural Killer Cell Dysfunction Syndrome" or something to this effect. With my viral load (measured by Interferon Alpha), a far higher NKC Activity measure than the "minimum normal" cited here (more like 100-200 or even higher) would be expected if my system were functioning as it should.
    NORMAL RANGE: Greater than 19
    MY LEVEL: 4

    RNASE-L ACTIVITY
    Causes destruction of RNA in cells in order to kill viruses in them. This is a "suicide" strategy to get rid of viruses not being killed by the rest of the immune system. What this test doesn't seem to say is whether this is regular Rnase-L (which has some functional benefit in killing viruses) or Low Molecular Weight Rnase-L (a form that seems purely destructive to the individual---see Dr. Kenny de Meirleir's somewhat cryptic writings on this topic.)
    NORMAL RANGE: 1.0-10.0
    MY LEVEL: 40.00

    APOPTOSIS
    Marker of cell death--caused by Rnase-L activity and other factors (including presence of HHV6a, toxins and bacteria). Cell death causes the body to have to work harder to replace the destroyed cells. If the body does not have the resources to do this, structural damage is sustained.
    NORMAL RANGE: 0-5%
    My LEVEL: 10.70%

    **

    FOREBEARANCE'S RESULTS (March 2007):

    Interferon Alpha Level: 322.0 ----Normal is less than 12.5
    I am very abnormally high.

    NK Cell Activity: 6 ----Normal is above 19
    I am very abnormally low.

    RNaseL Activity: 10 ----Normal is 10-30
    I am normal!

    Apoptosis: 2.20% ----Normal is 0-5%
    I am normal!


    Note there is a changed reference range for the Rnase-L Activity from last August (when I got the test done). I don't know what to make of that changed reference range, or exactly how to interpret these Rnase-L Activity scores in general. While it is clear that Rnase-L activity is often abnormal in CFS patients, why that is the case--and whether a higher level is helpful or harmful to them considering their other problems--seems not to have been fully resolved. If anyone can provide a good explanation, please share!!!
  8. zipk

    zipk New Member

    Hi L:

    It seems I had a slightly different test done at Immunosciences.

    2-5A Synthetase Activity - A key enzyme in the antiviral defnese mechanism through interferon action. In CFIDS, Activated 2-5A synthetase was increased up to 10 folds intracellular levels of bioactive 2-5A was increased up to 220 fold and RnaseL was elevated up to 45 fold.

    My result: 10.90 Ref Range 0.0-3.0

    PKR Activity - an antiviral anti-proliferative gene induced by interferon. PKR expression is implicated with neoplastic cell growth and the induction of programmed cell death (Apoptosis). The activity of PKR is enhanced significant in patients with viral infections and is decreased during the course of the disease in parallel with clinical ameliorations and reversal of clinical symptoms.

    My result: 9 Ref Range 0.1-1.0

    NK Cell Activity

    My result: 7.50 Ref Range 20-50

    Total T Helper Cell: 702 Ref Range 336-2376
    % T Helper Cell: 48 Ref Range 35-55
    Total Suppressor Cell: 366 Ref Range 192-1598
    % Suppressor Cell 25.0 Ref Range 20-37
    T-Helper/T-Suppressor 2 Ref Range 1-2.5

    Don't know what this all really means. I never had it interpreted by a doctor.

    Like I said in another message to you, I had an infectious panel done by MD Labs and all the viral stuff was negative, as well as Chlamydia and Mycoplasma. My D levels per the Marshall Protocol testing was high, making me a good candidate for that protocol. Hmph. Just don't know what to make of it all.

    Zip
  9. Slayadragon

    Slayadragon New Member

    Well, the first two measures seem to be related to alpha interferon and thus to demonstrate (if maybe indirectly) the presence of viral activity. Your scores are pretty elevated, and so (if the test is providing accurate info) you have significant viral activity going on.

    NK Cell activity is low, which means that your immune system (again if the test is right) isn't functioning properly. As always, the connection between high viral activity and low NK Cell activity seems to suggest a long-term problem (since the immune system doesn't seem very up to the task of killing viruses).

    I wrote three hypotheses on the other thread. With the apparent viral activity, it doesn't sound like tumors are your problem.

    My best guess is that you have viruses other than the ones you had tested for.

    The possibility that one or more of these tests (either the Immunosciences one or the viral titers) is not providing the results that it's supposed to always exists too.

    Other hypotheses certainly also may exist.

    Best, Lisa

    [This Message was Edited on 04/12/2007]
  10. Waynesrhythm

    Waynesrhythm Member

    Hi Lisa,

    Thanks so much for sharing this information with us. I think it holds signficance for many of us no matter what direction we're focusing on at the moment.

    Regards, Wayne
  11. swedeboy

    swedeboy Member

    Great post Lisa!

    Yes I had all three of the CFS panels done at Immunosciences Lab. The Total was $1100. There is a 50% disount if you get a panel of tests instead of an individual test.

    The two red flags on my Immunosciences Lab results are:

    Secretory IgA = 108.0 Normal range 10-40 Ug/ml
    and
    Apoptosis = 7.90 Normal range 0-5% Percent

    My HHV-6 is negative on Immunosciences Labs, but I tested positive (for a conventional past infection) when I was tested with a focus lab with Dr. Montoya

    For Immunosciences My Blood was Drawn on 1/9/2007.

    I had The CFIDS Panel 1 and 2, and The Molecular Biology of CFIDS Panel test performed, $1100, and here are the Immunosciences results.

    Total WBC = 3900 Normal range: 4800-10800 mm3

    Total Lymphocyte = 1716 Normal Range 960-4320 mm3

    %Lymphocyte = 44.0 Normal range 20-40% percent

    Total T-Cell = 1218 Normal range 586-3672 mm3

    % T Cell (T11, CD2) = 71.0 Normal range 61-85% percent

    Total T Helper Cell (T4) = 686 Normal range 336-2376 mm3

    % T Helper Cell (T4) = 40 Normal range 35-55% percent

    Total Suppressor Cell = 480 Normal range 192-1598 mm3

    % Supppressor Cell (T8) = 28 Normal range 20-37% percent

    T-Helper/T-Supressor = 1.4 Normal range 1-2.5 Ratio

    Total B Cell = 137 Normal range 48- 648 mm3

    % B-Cell (B1, CD20) = 8 Normal range 5-15% percent

    Total Natural Killer = 377 Normal range 52-864 mm3

    % Natural Killer Cells = 22 Normal range 5.5-20% percent

    Total NKHT3 Positive = 34 Normal range 14-216 mm3

    NKHT3 Positive = 2 Normal range 1.5-5% percent

    Total NKHT3 Negative = 343 Normal range 38-648 mm3

    % NKHT3 Negative = 20 Normal range 4-15% percent

    Total CD3+ CD26+ = 532 Normal range 10-1944 mm3

    % CD3+ CD26+ (TA1) = 31 Normal range 1-45% percent

    Total T3 (CD3) Positive C 1235 Normal range 509-3413 mm3

    % T3 Positive Cells = 72 Normal range 53-79% percent

    Anti-Nuclear AB By Hep-2 = 1:20 "Titers up to 1:20 indicate
    a weakly positive test."

    IgG Candida = 926 Normal range 0-2475 Elisa

    IgM Candida = <400 Normal range 0-2248 Elisa

    IgA Candida = <400 Normal range 0-1426 Elisa

    IgG Cytomegalovirus <8.00 Normal range <8.00 EU/ml
    (I assume mine is less than
    (8.00, this is exactly how
    (the results appear on the
    (print-out, maybe for some
    (test results they don't
    give an exact number)

    IgM Cytomegalovirus <0.90 Normal range <0.90 Index

    IgG Epstein-Barr Virus VCA = 2.40 Normal Range <0.90 Index

    IgM Epstein-Barr VCA = <0.90 Normal range <0.90 Index

    IgG EA = <0.90 Normal range <0.90 Index

    IgG EBNA = 6.08 Normal range <0.90 Index

    IgM EBNA = <0.90 Normal Range <0.90 Index

    IgG HHV-6 (Herpes Type-6) = 5 Normal range 0-76 Elisa

    Igm HHV-6 (Herpes Type-6) = 15 Normal range 0-57 Elisa

    Total Immune Complex = <4.4 Normal range <4.4 ug Eq/ml

    Activated T-Helper Cells = 25.5 Normal range 23-45 %

    Activ. T-Supressor Cells = 11.7 Normal range 9-21 %

    Activated B-Cells = 4.0 Normal range 1.5 - 6.5 %

    Natural Killer Cell Activity = 27 Normal range >19 LUs

    *(NK Cell Activity in 2005 was 11.40 LUs)

    NK Cell Activity/Cell = 7.00 Normal range 5.1-10 LUs

    %Natural Killer Cells = 22.0 Normal range 5.5-20% percent

    % T3 Positive Cells = 72.0 Normal range 53-79% percent

    Rheumatoid Factor = <16.0 Normal range <16.0 IU/ml

    Secretory IgA = 108.0 Normal range 10-40 Ug/ml

    Rnase-L Activity = 20 Normal range 10-27 Active-U

    Apoptosis = 7.90 Normal range 0-5% Percent

    Interferon Alpha Level = <12.5 Normal range <12.5 ng/ml


    *******Summary Results********

    Results Were Verified By Repeated Testing

    The Following Abnormalities Were Detected:

    Total WBC = 3900 Normal range: 4800-10800 mm3

    %Lymphocyte = 44.0 Normal range 20-40% percent

    % Natural Killer Cells = 22 Normal range 5.5-20% percent

    % NKHT3 Negative = 20 Normal range 4-15% percent

    IgG Epstein-Barr Virus VCA = 240 Normal Range <0.90 Index

    IgG EBNA = 6.08 Normal range <0.90 Index

    Secretory IgA = 108.0 Normal range 10-40 Ug/ml

    Apoptosis = 7.90 Normal range 0-5% Percent



  12. Reidsbeads

    Reidsbeads New Member

    I just want to know if they have a test like this for FMS patients as well? Sounds like a great break through!!!
    I am happy for all of you but I want in too!! So do you know if this is available for FMS? Tam
  13. roge

    roge Member

    you say you have FM, well do you have fatigue cause > 50% of FMers do. If so, you could have the same underlying cause as those with the label CFS. Thus any test for CFS might be worthwhile for you and anyone else with FM.

    All of us are trying to test for and treat underlying causes , not so much what label/dx we have been given. Many of us have been diagnosed with either FM or CFS by doctors who have no clue really what these diseases are about and most have not even attempted to try and address underlying causes. Thus for most of us, depending on what doctor you went to and what symptoms you stressed the most to that doctor , one could just as easily have been diagnosed with CFS instead of FM and vice versa.

    Peace