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Undiagnosed Immunosuppression

Discussion in 'Immunological' started by undiagnosed, Mar 20, 2016.

  1. Knockknock

    Knockknock Senior Member

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    I think hiv has an envelope protein like the pne herpes viruses have, for that reason even with low levels underectable still in the body like most herpes viruses , hhv6,cmv, ebv...
     
  2. Lolinda

    Lolinda POTS + MCAS

    Hey @undiagnosed , so here I am again :)
    I spent a day or so trying to find an explanation for our mutual problem: decreasing wbc counts, total and various subtypes (your diagram shows the trend nicely!). Now there is actually a good explanation, but unfortunately, I lost the original source long ago. Here is a short mention of it by an ivy league ex- professor:

    (thanks to @Emootje !)
    go to minute 21. there he explains that wbc are fighting bugs in fat tissues. This is what draws the wbc out of the blood. He sees lowish wbc in tons of his patients for this reason.
    The video is about autoimmunity. If you dont have any, it doesnt matter for my argument. My point is: low wbc are by no means any proof of having too few wbc, but mean in many patients that they are out to fight.
    I red a great paper on this "wbc go into fat cells" a while ago, but in spite of searching a lot, I just dont find it again. In any case, this is not just some stray sentence in a long interview. There is more research behind.

    I see your posts about your viral hypothesis. I see you approach it with proper realism and responsibility for yourself, being well aware that it is a theory for a desperate situation where all other explanations are even less likely... so proposing an undiagnosable virus may be still the most viable theory.
    I hope this "wbc are out to fight" theory could be an alternative explanation. I hope it to be a more happy explanation: it is treatable. I wish you luck with it, so one day you feel so happy that you replace those 3 horrible crosses in your avatar by 3 smiling flowers :tulip::bouquet::tulip::) :) :)
    Btw, in minute 52 the prof mentions that he can switch stiffness on and off in his patients by having them consume or avoid lectins. I am referring to your complaint you mentioned:
    Now, what to do next?
    - More papers needed on any "wbc are out to fight" / "wbc go into fat cells" theory
    - which wbc subgroups would be most affected? Do they fit us?
    - The prof in the video proposes a treatment, will this by any chance apply to us?

     
    Last edited: Mar 20, 2017
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  3. Knockknock

    Knockknock Senior Member

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    !! The bottom line is that Me/cfs screams( RETROVIRAL) all over, i still dont understand why some people refuse to contemplate and acknowledge that possibilit, its a high possibility, im not trying to convince or impose my believe to anyone, but this is the only explanation.
    Im trying to understand why there is so many people in this desbelieve that me/cfs could be the result of Retroviral infections.
    Why??
    There is sooo many things that point that way, there is so many things so similar to AIDS, doctors, researchers, authorities in me/cfs often compare it with AIDS, many have said if the AIDS name wasnt taken thet would call it AIDS and not cfs.
    From the outbrakes, to the immunosupresion, high cancer rates, oxidative stress, associated viruses and oportunistic infections like hhv-6, cmv, ebv.. that ate also know to give progession to AIDS..
    Peoole talk about a science that doesnt exist on Me/cfs, them ignore all this facts( FACTS) .
     
    Last edited: Mar 20, 2017
  4. Lolinda

    Lolinda POTS + MCAS

    @undiagnosed - some of your symptoms I could already resolve in myself:
    I had all of these except foot pad atrophy.
    • Fungal infections in nails went away from avoiding all sugars and all sugary food (chocolate, honey, etc). It was a very slow process over years. I believe the trick is avoiding blood sugar spikes.
    • Skin fungi went away in me from smearing Mg-Cl and B5 on them, in watery solution. Confirmed by baffled dermatologist that seborrhoeic dermatitis gone (that's a fungal disease). Fungi on feet skin gone equally. Irritated skin on achilles tendons gone equally (I get that from running a lot)
    • Reduced acuity: Do you know the research by Ritchie Shoemaker? He uses reduced acuity as a screening test for mold disease. I was positive for this and many other of his tests, but could finally prove that in me the pathologic test results come not from external mold exposure but from gut bugs. He confirmed me by email that it makes sense. I do not remember what resolved things. Can dig it out if of interest.
    • Muscle weakness: I was so weak I could lot climb up stairs or lift a bag. In fact, I fullfilled also all other criteria for ME. Solution
     
    Last edited: Mar 20, 2017
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  5. undiagnosed

    undiagnosed Senior Member

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    I agree that low WBC itself doesn't mean that you have too few. You would need to correlate it with clinical indications to make that determination. Speaking for myself, I have had a number of clinical conditions associated with immunosuppression which is why when I look at my CD4 counts I consider that prior clinical evidence to come to the conclusion that the declining CD4 counts are likely significant and indicative of having too few which are not functioning properly.

    Thanks, I try to be as objective as possible. I wouldn't call it an undiagnosable virus. If I am correct, it is diagnosable, I just need access to the appropriate tests. The tests are available and routinely used in research settings so it's not like anything new has to be invented to detect it. That's why this is all so frustrating.

    Thanks, I appreciate it, wish you the best as well. The crosses in my avatar are probably a bit misleading. It's from the last scene in Monty Python's Life of Brian. If you haven't seen it, you can watch it here. I use it because it matches my philosophy to not take life too seriously. The absurdity of the whole scene is hilarious and a great commentary on the absurdity of life.
     
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  6. ukrmen

    ukrmen

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    Undiagnosed, I think you are familiar with the diagnosis Idiopathic CD4 + T-cell lymphopenia. Short.
    Idiopathic CD4 + T-cell lymphopenia - heterogeneous immunological syndrome where decreased number of lymphocytes with a phenotype CD3+CD4+ in the blood (<300 cells /mcl and <20% of the total pool of T-cells) under normal other parameters of the immune status, and the absence of HIV-infection. Among the representatives of the general population, this immune dysfunction occurs in 0.25-0.4% of cases, but in hospitalized patients the proportion of immunodeficiency increases up to 5-6%.
    Idiopathic CD4+ T-cell lymphopenia results in the development of severe recurrent opportunistic infections, including herpesvirus, papillomavirus, mycobacterial and pneumocystis, and leads to the formation non- protective immunity after vaccination. Many patients suffer from allergic, autoimmune, immunoinflammatory and neoplastic complications. Among autoimmune manifestations of this immunodeficiency prevails primary Sjogren’s syndrome. In 20% of cases develop lymphoproliferative and solid tumors, often caused by opportunistic microorganisms. For the treatment of immunodeficiency currently proposed several immunotherapeutic agents including recombinant interferons-alpha and -gamma, interleukin-2 and -7, which have demonstrated efficacy in case reports and small controlled clinical trials. In very severe cases, transplantation of hematopoietic stem cells from a compatible donor is recommended.
    I live with the diagnosis of diopathic CD4 + lymphocytopenia at least already for the past 12 years. During this time, the number of my CD4+ T cells varies between 200 ... 500, and the number of T lymphocytes with the CD8+ marker ranges from 1000 ... 2500. The typical immunoregulatory index is 0.2..0.3. I accept periodic courses of maintenance therapy IFN gamma and peptides. I constantly monitor the presence of DNA viruses HHV4, HHV6, HHV7 in the blood. When the virus enters the blood, I take valtrex at a dosage of 6 g / day for 2-3 weeks.
     
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  7. undiagnosed

    undiagnosed Senior Member

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    Hi @ukrmen, I am familiar with Idiopathic CD4 lymphocytopenia (ICL). Currently, I do not meet the criteria for ICL as my CD4 count is > 300 and CD4 % is > 20. However, my CD4 count appears to be trending downward. I am going to be getting it measured again within the next few weeks. I think I am also going to get some HHV antibody titers measured, maybe EBV and CMV. Do you measure antibody levels or do PCR to detect DNA?

    The 0.25%-0.4% figure seems high, do you have a source for that? A paper I saw reported only 258 cases of ICL in scientific literature as of 2012. That figure is way less than 0.25%-0.4% of the general population. By comparison, a paper reported 25 seronegative HIV-1 cases as of 2009. This does not include cases of seronegative HIV-2 which have also been reported. Given that I have a risk factor for HIV, low IgG1 which could theoretically impact antibody detection, and a progression resembling HIV, the HIV hypothesis looks more likely for my case.

    The paper I saw also found this to be true. I have Sjorgen's symptoms including dry mouth and dry eyes. However, I've been tested for autoantibodies and the results were negative. These Sjogren's symptoms are also common in HIV infection.

    Do you have all of your labs in your possession? I think it would be really useful to document your case. I am working on a project to track and share medical data called p2pdx. It's not quite ready to use yet but when it is it'd be awesome to have your data.
     
    Last edited: Mar 21, 2017
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  8. Knockknock

    Knockknock Senior Member

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    Waoooo!!!
    This sounds like real science!!
    Also sound like karen lambert, im strong believer of her theory on none HIV-AIDS.
    I believe the immunosupresion that we have its do to retroviral infection, herpes viruses are know to accelerate replication of HIV, HTLV RETROVIRUSES.
    They help enter the cell and replicate.
    I keep saying that the immunodeficiency we see on ME is very similar to AIDS.
    If in fact ME is the result of retroviral infection especially a strain from the MLV gama retrovirus family, this explain why we dont progress to AIDS, becouse MLV retroviruses are slow replication.
    This also explain why onset ofter herpes virus infection or postviral onset.
     
  9. undiagnosed

    undiagnosed Senior Member

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    Just to be clear, Idiopathic CD4 lymphocytopenia is a distinct syndrome that to my knowledge has no established association with ME/CFS.

    Again, Idiopathic CD4 lymphocytopenia is different and opportunistic infections that would be considered AIDS defining in the presence of HIV are seen. Also, there have been retroviruses with putative association to ICL including HIAP-II and HICRV.
     
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  10. ukrmen

    ukrmen

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    Hi @undiagnosed.
    Yes, I periodically measure IgG titres to HHV3, HHV4, (VCA), HHV5, HHV6. All titles are high. For example, the last titre to HHV4 (VCA) was 32.1 at the reference value 1.1 boundary, the titer to HHV6 was 0.924 at the reference value 0.5 boundary. IgM measurements are negative.
    However, I agree with my attending physician that the control of DNA in the blood plasma is more important for choosing the tactics of treatment, so most often I do this analysis. It is he who gives start to the beginning of the next course of treatment with antiviral and maintenance drugs.
    Here is the link you are requesting https://www.uptodate.com/contents/idiopathic-cd4-lymphocytopenia/abstract/15. I do not know if the forum rules are allowed to give links, so if necessary I can drop you into the mail.
    Here and to me my doctor says that 0.25% is not very small, one person out of 400, so do not worry.
    Of course, different authors give different figures, there are other data.
    In my case, IgG1 is also reduced to 2.5 at the reference interval 4.9 ... 11.4. In this case, I take intravenous octagam.
    It would be interesting to explain your concern about the low values of IgG1 in detecting antibodies to HIV.
    As for your project. It would be good to build and train a neural network that provides a treatment regimen and a prognosis based on a patient data bank. However, it is obvious that on this way there are many difficulties of legal, financial, technical nature.
    In addition, such work requires considerable time to input and structure diverse data. This is a very large work, certainly designed for enthusiasts.
    I, of course, are ready to participate in your project as far as possible, when it is ready for work. I monitor the dynamics of subpopulations of lymphocytes (B, T, NK) by 31 indicators (helpers, killers, natural killers, their activation, naive cells, regulatory cells, B1, B2, memory cells, DPT, DNT, etc.), and general blood test against the background of the treatment.
    But still, I'm more concerned with the practical side of the matter.
    Sincerely, ukrmen.
     
    Last edited: Mar 22, 2017
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  11. Knockknock

    Knockknock Senior Member

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    I personaly think that IDL is a missleading name used, like CFS in our illness, those are names that dont really describe the illness.
    Basically IDL and AIDS are almost identical... ofcoure there couod be small difference( even hiv/aids people have diference in severity and symptoms depending on co infections).
    But the immune deficiency low immunity in both diseases is the main cause of allowing all this ( herpes viruses to reactivate causing all kind of other sub illness) in many cases infection of the CNS, in others totally depletion of CD lynphocytes, B cells, T cells..
    remember example as in HIV hhv-6 its blame fir progretion to AIDS why? Becouse it helps hiv to enter Cd4 & replicate( its well documented) , CMV, Hhv-7 have same caracteristic, EBV infect B cells, all this herpes play a Role in all 3 illness.. in diferent ways, but what is really allowing them to replicate what is allowing the low immunity, the change Viral Rnase L its the unknow part( onviously if hhv-6 can deplete CD4 with out the presence of HIV, them HIV is not the only cause of AIDS, by what sicience have said since the AIDS epidemic yes, but if you look closer to some ( facts) including that herpes viruses can do same immunosupresion with out the presence of HIV, them we can say that there has to an undelaying pathogen ( unknow ) in all 3 illnesess allowing this viruses( herpes viruses) and ( hiv) to replicate and deplete each part of the immune system they best fo like the example i put EBV (B CELLS) HHV-6 (CD4 lymphocytes)..
    I mean no one need to be a rocket scientistc to see this... this is easy to the naked eye.. no scientistc terminology will chamge this fact ( in all 3 illness herpes viruses are highly suspected to be directly or indirectly involve constanly or periodically reactivation)
    That is the reason why many people on Antivirals see improvements.
    Come on naked eye!!!
    ??? What is allowing this in all 3 illness AIDS, IDL, CFS???
     
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  12. ukrmen

    ukrmen

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    Hi @ Knockknock.
    The term "ideopathic" means by definition that the cause is unknown. Although some authors point to the root causes of mutations in the genes UNC119, p56Lck, etc. Perhaps they are right, perhaps not. Probably the virus is still to blame. What is the question? And where to look for it? In the mucous membranes, salivary glands, cerebrospinal fluid, plasma?
    HHV7 and HIV enter the cell using the same CD4 glycoprotein and causing their depletion. However, HHV7 does not lead to a catastrophe due to total immunodeficiency, as the immune system copes with it, in contrast to HIV. However, the presence of HHV7 often leads to neurological problems. Why?
    In contrast, HHV6 increases expression on the cell membrane of the glycoprotein CD4, thereby facilitating the entry of both HHV7 and HIV into the cell, contributing to both.
    I do not mind looking for an answer together. Offer.
    What is the dynamics of your helpers, T killers, natural killers?
    What is the viral load?
    Sincerely, ukrmen.
     
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  13. Knockknock

    Knockknock Senior Member

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    No i dont have Hiv, i just know that herpes viruses like hhv-6-7- cmv help hiv to enter ans replicate faster, they any use as you said the protein or the envelope protein that hiv use( something interesting is that hiv like most herpes family viruses one infect stay in the body, stay in tye host for life.
    You can reduce viral load but not clean off completle this sugeat they may have the coating protein thesame or very similar.
    In my opinion what happen to cfs is thesame thing that happen to HIV, there is another underlaying pathogen woth slower replication that like most of retrovirus like aids transform your Dna, resulting in gene mutuations , them allow this others herpes family to reactivate them the cascade starts.
    IDL,,AIDS, CFS.. all have many things in comun.
    MLV retroviruses have are know to have slower replication than HIV.
    This may explain why people that use HIV DRUGS, ARTS, can use them to at lowe intermiten doses.
    Also why only nucleotides reverae transcriptance like Raltegravir that have both actions on herpes and hiv ... and TF to.
    People totally ignore all this ( facts) oftren askimg for science background or publications.
    But they are out there.. if you started to missed stuff from your house back yard, that didnt happen before over the 20 years you have been at your house,but a new neighbor just move in an right them things started to happen, them you realized that were he. Was living before neighbors were also missing stuff from their house.. when he left the other neighbor things stoped missing there, now they are missing in your neighborn hood??? Them you learn the guy had previous record for robery!! You dont need a video camara to realize what is going on!!!!!
    Its more than obvious!!
     
  14. Knockknock

    Knockknock Senior Member

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    We
    We just dont proggress to full blow LIKE AIDS becouse hiv it replicate faster than MLV an other retroviruses... but it have been demostrated that your dont need HIV to have immunosupresion immune deficiency like AIDS... IDL your case is a living proof of it :)
     
  15. undiagnosed

    undiagnosed Senior Member

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    You can post links. I took a look at the reference you posted and I now see why there is a discrepancy between the numbers. The CDC definition of Idiopathic CD4 Lymphocytopenia is defined as:

    A documented absolute CD4 T lymphocyte count of less than 300 cells per cubic millimeter or of less than 20% of total T cells on more than one occasion, no evidence of infection on HIV testing, and the absence of any defined immunodeficiency or therapy associated with depressed levels of CD4 T cells.

    You can see from the definition that repeated measurements over time must be below the threshold to meet the criteria. The reference you posted is actually referring to transient CD4 lymphocytopenia where only a single measurement meets the criteria and normalizes afterward. From this paper, "transient CD4 lymphocytopenia is common and has been estimated to occur in healthy HIV-negative individuals within a 95% confidence interval from 0.4-4.1% at any given time." So our sources are in agreement. Idiopathic CD4 lymphocytopenia is much more rare while transient CD4 lymphocytopenia is more common.

    Interesting, mine is 322 mg/dL with a reference range of 422-1292 mg/dL. What are your other IgG subclasses and your total IgG, IgA, IgM?

    The primary IgG subclass response to HIV is IgG1. Typically, HIV+ patients have elevated IgG1 and commonly elevated total IgG. However, if IgG1 is deficient it may be possible that the threshold for detection in the antibody test will not be met and it will be classified as negative.

    Ya, treatment recommendation and prognosis would be cool as it would be possible to have more individualized recommendations. Obviously this wouldn't be possible until a significant amount of data has been collected. I agree that there is a significant amount of work involved to reach the full potential. The first phase is focused on data collection. That goal is feasible with my current resources, it's just a matter of how long it will take as it's just me with part of my available free time at the moment. I am in the process of getting something basic ready to use and trying to see if I can get any sort of funding to expedite things. I set up a Patreon page but unsurprisingly don't have any supporters yet. Maybe when there is something to use I can get some support through that.

    Cool, sounds good. I understand the practical side and trying to figure out the best path forward given the resources available to us. The data will primarily benefit future patients, but it will also help to connect to people who are quantitatively similar to you to try and find a path forward by working together.
     
  16. undiagnosed

    undiagnosed Senior Member

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    AIDS is a syndrome, HIV is the retrovirus that causes AIDS. By definition AIDS is only associated with HIV, not any other retrovirus. That doesn't mean that other retroviruses can't cause immunodeficiency.

    Raltegravir is an integrase inhibitor.

    We here in this thread are well aware of your position. You don't have to keep restating it. If you have any specific references or data that are relevant to the discussion you want to share, I would ask that you present them. Otherwise, please avoid unnecessary speculation.
     
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  17. ukrmen

    ukrmen

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    Hi @undiagnosed.
    It seems to me that it is about fulfilling all the criteria of LDL, including the criterion for the repeated measurement of CD4 + levels.
    I quote a link to more recent similar data (0.2 ... 0.6%). Http://www.bloodjournal.org/content/bloodjournal/117/22/5892.full.pdf?sso-checked=1. Further I quote:
    "Selective depletion of T lymphocytes is common in both primary and secondary immunodeficiencies." Idiopathic CD4 T lymphocytopenia (ICL) is defined by an unexplained ! PERSISTENT! CD4 T lymphocyte count of 300 cells / L or 20% of the total T-cell Count.1
    Since the discovery of human retroviruses, sporadic ICL patients were recognized with a CD4 lymphocytopenia not infected by HIV or HTLV-1.2-7 Smith et al reviewed 230179 cases from the CDC AIDS Reporting System and described 47 ICL patients.2,3 Of these cases , Only 3 (6%) were asymptomatic. Screening of healthy blood donors confirmed a low prevalence of ICL of 0.2% -0.6%. "
    On the other hand, non-ICL causes of CD4 lymphocytopenia 95% confidence interval from 0.4-4.1% in the article you cited give a slightly different idea of the subject.
    The usual case, the subject of scientific disputes and good faith of the authors. I do not think that for us from the practical side these nuances are important. Much more important is what is happening to us. Although it is possible that when you build models in your project, this parameter is important.
    My subclasses of immunoglobulins before taking an octagam were as follows:
    IgG total 5.6 reference 6 ... 15 g / l
    IgG1 2.5 reference 4.1..11.4 mg / ml
    IgG2 2.3 reference 1.5 ... 6.4mg / ml
    IgG3 0.3 reference 0.2 ... 1.1 mg / ml
    IgG4 0.1 reference 0.08 ... 1.4mg / ml
    IgM 0.9 reference 0.8..1.6g / l
    IgA 0.85 reference 0.6..2.5g / l
    IgE 78.4 reference 30 ... 100 MO / ml

    After taking an octagam according to the results of several measurements within 6 months, the values fell into the lower limit of the norm.

    As for the detection threshold for the HIV test for IgG1, I do not think that this is critical, otherwise it would have to be taken into account in the test protocol.
    I would like to know did you analyze the DNA of your biological fluids for the presence of HHV1 ... HHV8 and have the levels of antibodies tested for these viruses? If so, do you think it is possible to share the results?
    Sincerely, ukrmen.
     
  18. ukrmen

    ukrmen

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    So, if I correctly understood your posts, you deny the phenomenon of IDL, or rather think it incorrect to explain it by an innate genetic defect, which can manifest not only in infancy, but also in adulthood. You explain IDL to an unknown at the present time human retrovirus, similar to HIV or HTLV, which is embedded in the cellular genome of the lymphocyte. Then one of the representatives of the herpesvirus family, under certain conditions (if you know, say which ones?) Activates the genes of this unknown virus, which leads to its enhanced but slower replication than HIV, and, accordingly, to a slower depletion of CD4 + T lymphocytes.
    Do you have any data confirming this hypothesis (links to research, own observations, etc.) It would be extremely interesting.
     
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  19. undiagnosed

    undiagnosed Senior Member

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    I don't want to debate it either, but it's important because a transient low measurement is fairly common especially around times of illness while persistently low measurements are indicative of an underlying disease state and are not common.

    So you were fairly low across the board. Were you evaluated for CVID? I see that you're taking IVIG so I guess the treatment is similar regardless of your diagnosis.

    I disagree with your premise. Take for example CVID. If a doctor sees it on your chart or knows you have it, they may consider that the antibody test for HIV could give a false negative. However, even that is not a guarantee that they will take any special action. Another problem is that many people don't know they have CVID so there wouldn't be anything on the charts. CVID diagnosis is notoriously delayed, something like > 6 years from onset of symptoms. The only way to be sure would be to measure immunoglobulin levels prior to the test. This is not part of the diagnostic algorithm for HIV testing. You can see a case report here of a CVID patient infected with HIV whose antibody test results were false negative due to his underlying primary immunodeficiency. If low IgG1 did have any impact on the antibody tests, it's not hard to see how it would be overlooked. I'm not saying that it does but it's a question that I think could be further investigated.

    No, I haven't done any testing yet for HHVs. I am planning to though. Probably will just do antibody levels as that's what I have access to at this time.
     
  20. ukrmen

    ukrmen

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    Undiagnosed. Thanks for the link. I want to tell you that measuring the drop of IgG antibodies to HHVs will not give you any noticeable benefit. Only DNA in the blood plasma.
     

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