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Results of Cytokine Multiplex 18 Report

Discussion in 'General ME/CFS Discussion' started by PhoenixBurger, Jun 24, 2013.

  1. PhoenixBurger

    PhoenixBurger Senior Member

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    I received my report back from Klimas Clinic and here are the results that were abnormal.

    Any input you guys can give would be appreciated, no matter how small.

    Disclaimer: I am not traditional CFS but something is definitely going haywire inside me.


    TH1 / IL8 RESULTS
    ----------------------------------------------------
    IL-2: Very High : 18 (range 1 - 8)
    IL-12: Very Low : 2 (range 4 - 9)
    IL-15: High : 8 (range 1 - 9)
    IL-8: Normal
    TNFRII: Normal
    IFNy: Normal


    PROINFLAMMATORY
    ----------------------------------------------------
    IL-1: Very Low : 5 (range 7 - 20)
    IL-6: Low : 0.6 (range 0.6 - 2.8)
    TNFa: Normal
    TNFb: Normal
    IL-18: Normal
    TNFR1: Normal


    ANTI-INFLAMMATORY
    ----------------------------------------------------
    IL-17: Very High : 7 (range 1 - 5)
    IL-4: High : 4 (range 0 - 4)
    IL-23: High : 608 (range 146 - 760)
    IL-13: Normal
    IL-5: Normal

    Questions: That IL-2 looks bad. Wonder what it means?
    Question: If anti-inflammatory numbers are high, does that mean my body is suppressing inflammation? Or does it mean that I may be dealing with autoimmunity (false alarm suppression of inflammation that isn't present)
  2. SOC

    SOC Back to work (easy, part-time work)

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    My Cytokine Multiplex-18 Report has some detailed descriptions down the right hand side. Yours probably does to. :)

    Interesting, we have abnormalities in IL-17 and IL-23 in common except that your IL-17 is very high and mine is low and Your IL-23 is high and mine is very low. o_O Darned freaky illness!

    Did you have IL-10 on your report? Mine is high, so yours is probably low.

    I think high IL-2 associated with autoimmunity, as is high IL-17.
  3. PhoenixBurger

    PhoenixBurger Senior Member

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    SOC - Well remember I am probably not a CFS patient. I did endure months of unexplained fatigue and countless other symptoms that had no rhyme or reason, but most of that has passed. It was during those really rough months that I set up the appt with Rey - and then had to wait 6 full months to see her.

    By the time I did, my situation had evolved into something more reminiscent of autoimmunity. So I expected my results to not quite match up with the typical ME patient. I have never felt that I am dealing with a struggling immune system due to viral overload, but the very opposite. And my results being opposite of yours may have some relevance.

    I didn't have an IL-10. She didn't put any notes on the side, but the pre-written text I see there is greek to me :)

    I am positive on Coxsackie A - IGG but negative on IGM. I can not determine if that means acute or paste infection. Usually IGM has to be positive for acute, no? I am still acute with CMV. Darn thing won't dip below "1". Been hovering there for 3-4 months now. Equilibrant is not smart for people with autoimmune issues, so I need to figure out if I am acute with Coxsackie. I will tough it out if I am. Otherwise I should avoid the stuff like the plague.

    Regarding IL-2, as I understand it, the presence of IL-2 prevents autoimmunity. Therefore my high level of IL-2 may indicate that my body is struggling against autoimmunity. Trying to squash it. They actually use IL-2 injections for people with autoimmune disorders, to calm things down. So you may be right, my high IL-2 may be a sign that I am pre-autoimmune. I hope it doesn't become autoimmune :(
  4. SOC

    SOC Back to work (easy, part-time work)

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    Let's hope it's not ME/CFS! The acute CMV is not good, though.

    Did you get an ANA test? That should tell something about autoimmunity.

    I'll dig out my cytokine report and see if I can figure out anything about your numbers.
  5. PhoenixBurger

    PhoenixBurger Senior Member

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    My life is a mystery right now.

    *all* of my markers for inflammation are negative or extremely low.
    Sed rate, ANA, and literally all the others.
    I do seem to have all the markers for infection (or cancer) though. Lymphs high. White blood cells high. CD8 is high. etc...

    I have powered through this CMV infection and have monitored the immunity (IGG) numbers as they slowly rose from almost nothing to, sky high .... and the acute infection (IGM) numbers as they went from sky high, to ... now ... 1.1. And its being a little b*** and refusing to go below 1.0 where i will officially be "done" with the CMV issue. Its just hovering there.... taunting me ... lol .. I think 3 months ago it got down to 3.0 from 15 and i thought I'd be scott free by now, but noooooooooo .....

    My kingdom for someone to tell me if Coxsackie IGM negative means NO acute infection or not...
  6. PhoenixBurger

    PhoenixBurger Senior Member

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    Hip. You're the expert on Cox test interps.

    What does it mean when Coxsackie A is completely negative on IGM, but positive on all IGG?

    Past infection?
  7. Hip

    Hip Senior Member

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    Yes, high IgG and zero or low IgM indicates a past, now latent infection. The reverse (high IgM and low IgG) would indicate a current active infection.

    IgG antibodies against a particular virus will be there for the whole life of a person. IgG is designed as the long term police force against a virus, trying to ensure it never springs back to life.

    The coxsackievirus A group do not normally cause long term "smoldering" infections anyway, so nothing to worry about with coxsackievirus A. I believe only coxsackievirus B group can cause the long term low level "smoldering" infections that can lead to ME/CFS.


    By the way, was looking through some threads recently and came across this comment you made:
    I would seriously look into this. I don't know the exact details, but if it is toxic mold, this can easily precipitate ME/CFS. And mold toxins, once breathed or ingested into the body can remain in the body tissues for 6 months or so. This means even if you remove yourself from a toxic mold source, or eliminate the source, it can take many, many months before your body clears out the toxins from the tissues, and so many months before you start feeling better. I don't know that much about toxic mold myself, but there are a few experts on this forum, so you might want to seek their advice.

    slayadragon for example knows a great deal about mold.

    Some toxic mold threads are here:
    Detection of Mycotoxins in Patients with CFS
    Toxic Mold Research Articles
    Mold Illness Resources and Information
    Anyone recovered after discovering residential toxic mold exposure?

    I hope that helps.
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  8. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    igg can still be an active infection just not a new infection. The high cd8 t cells is commonly high in active cmv and ebv infections and can be a guide of an active in fection as well as high viral titres if y can get them tested.
    http://www.sydpath.stvincents.com.au/tests/ImmunoFrames/lymphocytosis.htm

    CMV has been my issue and was told by a few docs that it wasnt active because i only had igg antibodies not igm but my current doc tested my t cells where we found the high cd8 which we monitored for 12 months where it stayed high and i stayed like crap. Then we did the antiviral thing and these cd8 t cells lowered with antivirals as my symptoms improved.

    The whole active and latent infection interpretation just isnt black and white even many docs get it wrong.

    cheers!!!
    SOC likes this.
  9. PhoenixBurger

    PhoenixBurger Senior Member

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    I would moreso assume that you had some other viral invader which you resolved with the antivirals, unless you took the one CMV antiviral specific for that? And felt better?

    Hip thank you. That's what I thought. I'm kind of blown away that I was put on Equilibrant even though I don't have positive IGM. Just goes to show that the patient should always double check the doctors conclusions. As crazy as this sounds, I forwarded the test results to another doctor who was taught under Klimas in immunology. He told me that same thing. He said IGM is the "memory" anti-body, therefore it represents past infection. When I called this into question, he later agreed I was right. Crazy. I know you and I have had debates on here about the medical system, and its problems, so here's another little story to chalk up supporting my viewpoint I guess.

    As for the water thing, I know what the problem is. It's the P-trap in each of the faucets. If you look up into the faucet, you can see the white disgusting gross stuff. I have now moved into a different unit in the same building. Same situation. If I turn on a faucet that hasn't been on for several hours, the first 10 seconds worth of water will get on my hand, and my hand will stink even after I wash and dry it with soap. I have called the management office in this condo tower, and they just tell me to run the water.

    Directly across the street from my building is a water treatment, Sewage facility. A local contractor told me that it pumps chlorine into the downtown Miami water supply, and is building gets the highest doses of that. They just dump in tons of it to clean the water, and further downstream, people get more realistic levels. He said people in this building get saturated with it. Not sure if that might also be an issue. But I can smell chlorine in the shower often.

    I will look into getting the P-trap's changed, but these faucets I'm sure have residue all up inside them. It may just be something with the water here.

    More likely this whole thing relates to the toxic medications I took before all this started.
  10. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    I did get 1 viral titre test but had been on famvir for a few m9nths at that stage but it still indicated a high enough igg to be active. Antiviral s only work against herpesvirus and I have only tested positive to ebv and cmv neg to hhv6 and hv1 and 2. Also my igg to ebv tested negative several years later which was pre antivirals. And this tested like this several times. So if we class that as no ebv then I only have cmv. I think if u read dr lerners work u will find the same thing with his research in that a positive igg and no igm can still be an active infection. I wouldn't rule it out with high cd8 either. Igm in cmv is know to be alot more unreliable test of an active infection then in other herpes viruses.
  11. PhoenixBurger

    PhoenixBurger Senior Member

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    My big question is about Coxsackie though. I would tend to believe that positive IGG-only for Coxsackie A simply means I had Coxsackie as a child, like most people. I already have positive IGM on my CMV so that is confirmed acute/active infection. I asked Dr. Rey if I should take some low dose short term antiviral to knock the CMV down, and she said no. Despite the fact that I have been dealing with positive IGM for over 7 months now.
  12. PhoenixBurger

    PhoenixBurger Senior Member

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    Hip -

    There is a post above i wrote to you as well.

    Couple issues: First off when I look at my HHV6 test result, it is also an "IGG" test. It showed positive, but at a "Dilution" level that was high. The result was positive at 1:40. Because of this the doctor wrote positive but not reactivated. Here we have an example of an IGG-only test result that is interpreted as possibly "ACUTE" but only if the ratio is high. In my case it wasn't. Have you heard of such a thing?

    With my Coxsackie the IGM was negative. But the IGG ratios were fairly high:
    Cox a7: 1:800
    Cox a9: 1:1600
    Cox a16: 1:800
    Cox a24: 1:800

    Is it possible she called this "Positive" because of the high numbers, despite IGM being negative?

    ----------------------------------------------

    Possibly another error on my test results. I have been tested numerous times for EBV acute and reactivation. I had EBV 12 years ago. So it has always shown as past infection. That would be:

    Negative EBV-VCA IGM (acute)
    Negative EBV-Early Antigen (acute)

    Positive EBV-VCA IGG (past)
    Positive EBV-Nuclear Antigen (past)

    On these test results however, the doctor marked me as positive for Early Antigen.
    Unfortunately the results are unclear so I can't determine if she's right or wrong.

    It says:

    EPSTEIN BARR VIRUS EARLY ANTIGEN (which would imply new infection) IGG: 1.78 AU/ML
    COMMENTS: Eb-Ea Range: 50% - 75%
    INTERPRETATION OF RESULTS:

    Statistics Report: n=33
    Std Deviation: 1.42
    Std Error: 0.2
    Mean: 1.83
    Median: 1.51

    PERCENTILES:

    10 - 0.73
    25 - 1.05
    50 - 1.51
    75 - 2.10
    90 - 3.16

    I fail to see any indication that I am positive or negative on this result. Can you clarify why she wrote:

    " + Mono Acute Antibody " next to the results?

    I have had at least 4 of these tests in the last 12 months since this all started and they all read as follows:

    EBV-Vca: < 0.2 (Negative)
    EBV-Ea: < 0.2 (Negative)
    EBV- Vca: > 8.0 (Positive)
    EBV-Na: > 8.0 (Positive)
  13. SOC

    SOC Back to work (easy, part-time work)

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    PhoenixBurger
    IGG and IGM interpretation is not as straightforward as some would like to think. This has been a big problem for people with ME/CFS. Too many doctors (and laypeople) grossly over-simplify and miss chronic infections.

    A positive IGG means you are able to produce antibodies and have been exposed to the virus. The dilution level may give a clue about whether the virus is active. If it's high and you have appropriate symptoms, you probably have a chronic infection. If it's high and you don't have appropriate symptoms, you are probably just making lots of antibodies still.

    A positive IGM means that you are within a couple of months of either a new infection or an reactivated infection. It does not tell you about chronic smoldering infection.

    So, for a healthy person a high IGG and low IGM means they were exposed to the infection once and cleared it, but antibodies remain. Usually the antibody numbers will reduce (IGG will lower) over a period of years.

    However, for a person with symptoms of the infection the high IGG (lots of antibodies) is likely to mean a chronic infection. Antibodies are high because the infection still exists. Treatment or a better test are warranted in that case.

    A person unable to produce sufficient antibodies to the virus will have a low IGG, but could still have an infection. They would present as having symptoms, but with a low IGG titre.

    As you can see, it's easy to oversimplify and screw up the interpretation. Dr R knows better than to do that.

    Your HHV6 IGG titre of 1:40 indicates you've been exposed to HHV6, but it's not currently active. Positive means you've been exposed, not that you have an acute infection -- postive (you had it), but not many antibodies remaining (it's cleared). A negative IGG only means the person has never been exposed. I have a negative IGG to CMV, for example, because I've never had it.

    Your coxsackie A IGG is positive meaning you've been exposed. If Dr R is not treating you, she probably believes it is not active but you have leftover antibodies.

    EBV EA arises immediately after a new infection or a very recently reactivated infection. Herpesviruses like EBV can reactivate frequently, even among healthy people. If Dr R is prescribing an antiviral she probably thinks your recent reactivation is indication of a chronic infection. If she is not prescribing an antiviral, she's probably thinking that it's a minor reactivation of the sort seen in healthy people and your immune system will handle it as a healthy person's will. Being under stress, either emotional or physical, can impair the immune system enough for herpesviruses to break through occasionally. Cold sores (herpes simplex I) are an example of that. Not a big deal, as long as your immune system is strong enough to knock it back again soon.

    Dr R really does know what she's doing. Honest! :)
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  14. SOC

    SOC Back to work (easy, part-time work)

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    PhoenixBurger
    I dug out my cytokine report to read the printed info on the side. Here's the best interpretation that I, a layperson, can suggest for your results. Your doctor would be a better source for interpretation, of course.

    High IL2 and IL12 suggest your body is trying to kill something off. If you have high CD8 (cytotoxic T cells) as well, you might be fighting an infection. It's also possible, I think, that what your body is trying to kill of is self cells (autoimmunity). :eek:

    Low IL1 and IL6 suggest your inflammatory response is abnormally low. Maybe due to anti-inflammatories you are taking....? You may not be getting the sufficient inflammation response to handle an infection.

    My report has printed on the left hand side:
    "TH17 (IL17 & IL23) cytokines affect anti-microbial immunity at the epitheilial/mucosal barriers & produce IL-22 which stimulates epithelial cells to produce anti-microbial proteins to clear out certain types of microbes. [Lowered] TH17 levels may leave the host susceptible to opportunistic infections."

    I'd guess, according to the above, that your body is trying to fight off an infection.

    I believe IL-2 inhibitors are used to treat autoimmunity or transplant rejection. That would be to reduce IL-2. So I stand by my suggestion that high IL2 might suggest autoimmunity. I could certainly be wrong, though; I have been wrong many times in my life. :)
  15. PhoenixBurger

    PhoenixBurger Senior Member

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    Thanks SOC

    Remember I have a very unique situation. I developed unexplained problems systemwide after the poisonous HIV antivirals were saturating my system for 30 days. (prophylaxis). The HIV medications I took are known to cause an immune inflammatory syndrome in which the immune system ENHANCES its REACTION to EXISTING pathogens that have ALREADY resolved. Its called "Paradoxical IRIS". My million dollar question has been: Can the body INCREASE antibody production, without CURRENT active infection.

    Okay okay HERE is the kicker. You nailed it. Though you may not have meant it this way: In the last 12 months I have tested positive for Lyme, CMV, Coxsackie, HHV6 etc... yet I am negative on *all* confirmatory and PCR testing. In other words, the antibodies are being made, but the viruses are *not* showing up. And my symptoms do *not* match any of the viruses behaviors at all. This leads me to believe that I am exhibiting an exaggerated immune response to pathogens I have already successfully suppressed. I have asked the Dr. this question and she said it is not possible to create IGM antibodies to something without it actually being active. Paradoxical IRIS may disprove that. I believe the immune system creates antibodies ongoing, no matter what, to keep past infections suppressed. If something tells the body to start doing that at a level 10x higher than before, you can bet that antibody tests are going to show high titers even though the virus itself hasn't budged.

    This has been my big mystery since the beginning. Its a question that medical science can not answer. But others in my shoes, who have taken the same HIV medications for prophylaxis, have all told me they've developed inflammatory immune responses that *eventually* branched off into autoimmune disease. I am trying to figure this out before i reach that point. They all said prednisone was their savior.

    However, when i see high immune activity and my "Natural Killer T Cells" are high as well, I worry about cancer. Taking prednisone while trying to handle cancer, can be a death sentence.
  16. SOC

    SOC Back to work (easy, part-time work)

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    I believe I know what you mean. :) I had an IRIS or IRIS-type rxn to Valcyte. As I understand it, IRIS (immune reconstitution inflammatory syndrome) only happens when your immune system has been weakened by chronic infection(s) and has not been responding appropriately to existing infections. The anti-retroviral or antiviral gives your immune system a break by helping to deal with the primary infection. The immune system comes back online with a vengeance, going after all the opportunistic infections it couldn't handle earlier. It's called paradoxical because it appears to be a paradox -- you take the antiviral or antiretroviral and suddenly you seem to be getting all these infections. In fact, you had the infections, your body just wasn't fighting them well. I suppose it's also possible that your immune system could be increasing all your IGG antibodies even without an active infection -- I hadn't heard that before, so I just don't know.
    It's also not so simple as you tested positive. Positive means you've been exposed. You can have some of the "bars" for Lyme without having a Lyme infection. Almost everyone is positive for CMV and HHV6. IGG and IGM titres can give a clue about whether the infection is active, but they're not definitive, as I mentioned earlier. If the viruses are not showing up by PCR, you don't have virus in your blood. That doesn't mean it isn't in tissues, or spinal fluid. The whole thing is very complicated.
    Well that's a very good sign!
    What the doc says is consistent is what I've heard about IRIS -- you are not creating IGM antibodies without an active infection.
    Dr Rey knows a lot about immunology and Dr Klimas is an immunologist who worked for many years with HIV patients. I believe they know what they are talking about regarding antibody titres. Since it's consistent with everything I've read, I have no reason to doubt them. Your hypothesis doesn't fit the known science. Yes, you'll continue to have IGG antibodies to keep latent infections suppressed, but not IGM antibodies. I think that's what Dr R was trying to tell you.
    An out-of-control IRIS reaction can be extremely serious. It doesn't sound like what you have. You should definitely check with the doctor who prescribed the antiretroviral for you. S/he should have been able to diagnose a severe IRIS reaction and treat it appropriately with something to reduce the inflammatory reaction. I'm not surprised helps people with IRIS, but I don't know if it's commonly prescribed for it. Prednisone is great for short, infrequent treatments, but really not good for you at all on any regular basis.
    If I were in your shoes, I would trust Dr R. She really knows what she's doing and is not unfamiliar with HIV treatment.
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  17. Hip

    Hip Senior Member

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    What SOC said above about IGG and IGM interpretation is not being as straightforward as some would like to think also applies to many other areas of medicine. Medical tests and interpretations are often not black and white, and in many cases may not provide simple yes/no answers. Medical test results are often suggestive of the presence or absence of condition, but do not provide absolutely certain yes or no answers. For example, even the very best and most expensive Lyme test is only 90% accurate. That means that 1 in 10 people will be falsely diagnosed positive or falsely diagnosed negative by this test.

    So doctors have to work with this situation of less than perfect tests — they have to work with possibilities and probabilities, not total certainty. This is why a good doctor uses a combination of testing, his experience, his gut instincts and his hunches to come to his conclusions.

    But doctors are not perfect or omniscient either, so a patient is definitely advised to do their own research, and act on their own hunches too, just like you are doing.

    Many people try Equilibrant/oxymatrine without any blood tests whatsoever. This is called empirical testing, where you try an anti-microbial, and if you get benefits, then you assume that you have the microbe it treats. Empirical testing is also useful when you don't have access to good doctors and all the appropriate tests, like most UK ME/CFS patients like myself don't .

    In any case, enteroviruses can be very hard to detect, so blood tests for these viruses many not be reliable indicators of whether you have an enterovirus infection or not. Chia found that only the ARUP lab enterovirus tests were able to detect the low levels of antibodies present in ME/CFS patients.

    So it is perfectly fine to try Equilibrant/oxymatrine speculatively.

    If every apartment has this fungus/mold in the P-trap, then it would seem that the source of the water (perhaps a tank on the roof?) must be contaminated. You might consider sending a sample of the mold away for testing, to find out if it is a toxic variety. There are labs that specialize in mold sample testing.

    Though I am not sure if you can get mold poisoning from the water supply, so you'd need to question someone with more expertise on this matter.

    This mold may not be the only factor in your illness, but it may be one of them. The smart money is on ME/CFS being caused when multiple factors (toxins and infections) hit a person simultaneously.

    I don't know how to interpret antibody positive and PCR negative results, but as a complete guess, certainly the paradoxical immune reconstitution inflammatory syndrome (paradoxical IRIS) you mention might be a good theory to account for your test results.

    I understand that paradoxical IRIS occurs when HIV patients begin drug therapy, and the patient's viral load then plummets, and the immune system begins to recover. But in some people, the restored immune system goes into overdrive and starts ferociously fighting any infections it comes across.

    It seems that you can get IRIS without having HIV: Immune reconstitution inflammatory syndrome in non-HIV immunocompromised patients.

    I wonder if you might have been hit by something like toxic mold when you first moved into your new condo, which suppressed you immune response, and as your immune system recovered, you developed IRIS.

    Corticosteroids would appear to be the treatment in severe cases: Management of the immune reconstitution inflammatory syndrome.

    Wikipedia says: "In paradoxical IRIS reactions, the events will usually spontaneously get better with time without any additional therapy. In unmasking IRIS, the most common treatment is to administer antibiotic or antiviral drugs against the infectious organism. In some severe cases anti-inflammatory medications, such as corticosteroids are needed to suppress inflammation until the infection has been eliminated."

    So this suggests you will slowly get better anyway, if you have IRIS.


    TIP: Given that you have an unusual condition, one thing to try might be the NIH's UNDIAGNOSED DISEASES PROGRAM, which is designed to "provide answers to patients with mysterious conditions that have long eluded diagnosis." Although I am not sure if they are still taking on patients; I think the service was over-subscribed.
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  18. Hip

    Hip Senior Member

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    PhoenixBurger
    Where did your IRIS theory come from, by the way?

    Since IRIS occurs when the pro-inflammatory cytokines outweigh the anti-inflammatory cytokines, and since you are very high in the pro-inflammatory IL-17, you might want to consider the supplement N-acetylglucosamine, say 750 mg twice daily, which reduces the Th17 / IL-17 immune response. Jarrow is a good brand of N-acetylglucosamine.

    Theoretically, N-acetylglucosamine might be helpful. But of course, you need to suck it and see. If it makes you feel worse, then stop.
  19. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Multiple issues eg viral and bacterial infection, maybe add immune defiency like low nk function and say adrenal fatigue and it makes everything complicated and can make it hard to tell if one particular treatment is helping. I think it generally takes treating a few issues at once before one feels things improving. Educated guesses with trial and error is the best we can come up with. Medically its called winging it.
  20. PhoenixBurger

    PhoenixBurger Senior Member

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    Here is what I do know:

    1) I have had bodywide muscle twitching, cramping, myopathy, fatigue, generlized loss of vitality, exercise weakness, and symptoms of nerve damage for the last 14 months. It has basically become [ Neuromyotonia ]. However I lack the necessary EMG/Blood result for diagnosis (as do 40% of those with NMT anyways).

    2) Neuromyotonia has two possible causes: Autoimmunity or Paraneoplastic Cancers. NMT is not associated with reactivation of viruses, nor are bodywide muscle fasciculations.

    3) Inflammatory foods make my symptoms worse. Burning left foot. Locked up left calf. Increased twitching. Eliminating inflammatory foods, calming my CNS, and exercise help improve my quality of life significantly, but it is always still there.

    Began after a 32-day course of : Kaletra and Combivir, with a 3 day stint of Efavirenz/Stocrin. This was not a mild course. It was 10 pills a day on a quadruple antiviral therapy at high doses.

    3) I had none of the documented side effects which have lead to discontinuation of meds in clinical studies. Instead I developed a severe inflammatory reaction, including: Body-wide macropapular rash. Enflamed skin. Fever. Lung inflammation and nonstop productive cough for the entire 32 days. Bouts of sore throat. Fatigue. Neuropathy in left leg. Generalized inflammation for entire 32 days.

    I was very sick. But I kept taking the drugs because I didn't want to acquire HIV.

    4) After finishing meds: Monthly bouts of nausea. Pain in sides of ribs under my arms. No swollen glands. Debilitating fatigue. Tingling sensations. Muscle weakness that saturated me to the bone. Would last for a week, then fade until the next month. Seven months after the meds: Developed body-wide twitching. Muscle cramping. Spasicity in calf. Sleep disturbances. Sleep paralysis with hallucinations. Cognitive difficulties. Speech disturbance. Neuromuscular symptoms. Continued muscle tingling/aching. This was a 2 month "acute" event which faded slowly. CMV showed positive IgM during this time.

    Clean MRI. Nerve Conduction. EMG. Clean CBC.

    6) Nearly every blood test has been normal. Have had at least 60 of them. Negative for M Spike Electrophoresis. Normal CBC's. Negative ANA. Normal Thyroid. Bartonella. Lactic Acid. Carnitine. Electrolytes. Hep C. Heb B. HIV Antibody. HIV RNA PCR. Co2. Vitamin D. PSA. Diabetes. Liver enzymes. Immunofixation. Normal RA. Normal C Reactive Protein. CD4 - spectacular and healthy. All normal.

    7) Only abnormal tests have been Immune system function: CD8 (sky high). IL-2 (sky high). IL-17 (high). Transient High White Blood Cells + Lymphs %. Others: High IGF-1. Low Testosterone (low 300's). Low Estradiol. SED rate of "1". High ACE. Positive CMV IgM.

    Conclusion: My body is fighting either itself (IRIS/Autoimmune), a Pathogen, or a Cancer.

    Considerations:

    1) I am in correspondence with 3 others with similar problems after HIV meds. Their health is failing, and their bloodwork is mostly normal. Generalized loss of vitality, muscle pain, twitching, neuropathy problems. Google [Edmond McNack HIV]. I speak to him regularly. He has spoken to many who developed CIDP and GBS (inflammatory autoimmune conditions) after the meds, when they were perfectly healthy before.

    2) HIV Meds are known to cause: Nerve Damage. Neuropathy. Mitochondrial/DNA/Lipid Membrane damage. Inflammatory Immune reactions (IRIS). Viral Reactivations. Blood Diseases/Cancers.

    3) I had Hep B vaccinations at same time as HIV meds. Hep B vaccine known to cause autoimmunity in some people. Hep B Immunoglobulin shot 1 year prior, due to an exposure.

    4) My clinical presentation is that of Neuromyotonia. Prior to that, it was undefined and vague. Whatever it is, is slowly progressing. Not resolving. The options of Autoimmune, Viral Reactivation, or Cancer fit in perfectly with known effects of Antiretrovirals.

    This isn't easy. There probably is no answer. But one needs to think "outside the box" a little and not just rely on "current medical knowledge" or assume infallibility of doctors just because they went to immunology school. I would kill to have a doctor who is capable of exploring thought experiments and whatnot, but the medical culture isn't capable of such things. Maybe you guys can help me with a thought experiment here.

    :)

    Hip - is there something I can take for IL-2 ? thats the one I am sky high on ...

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