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    Old 10-18-2013, 06:53 AM   #1
    yalwayssick
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    Question Immune Dysfunction & Blood markers

    What are the links with Autoimmune Dysfunction relating to Adrenal Exhaustion, Hypogammagloblenmia, low IgG, low RBC platelet production, & low Killer Cells?

    How are the Complement Systems negatively impacted by Autoimmune Dysfunction relating to connections of impaired CNS, Endocrine and Blood systems?

    What are the Specific Blood Tests required to diagnose or Rule out CVID??????? Questioning this aspect of testing for the Primary Condition either unfounded or induced, with the secondary conditions that manifested.

    What kind of specialist should be contacted: Hematologist? Immunologist?

    Any input advice or feedback appreciated.

     
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    Old 10-19-2013, 01:14 AM   #2
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    Re: Immune Dysfunction & Blood markers

    Hi & welcome. I couldn't tell from your post how far you've gotten in your search for answers, what kind of doctors you've seen so far, or how wide a net they've cast... so I'll start off with the AI's.

    AUTOIMMUNES. Have you had an ANA blood test? It's a very general test that's typically done early on, when symptoms and/or basic labs warrant. If ANA is positive, next task is to look for MORE SPECIFIC autoantibodies that might explain your standard lab abnormalities & what condition(s) might be the underlying cause. For example, are your RBC's low because they're being attacked by autoantibodies... and ditto with platelets?

    Re: IgG, one of my lupus hardcovers states bluntly that IgG is the "most important part" of the normal immune response, and that "most autoimmunes" feature IgG abnormalities. So that's yet another reason to want autoimmunity ruled in or out.

    As to which specialist to start with to look into autoimmunity, that would all depend on symptoms & which abnormal values your PCP has found. I think there are various possibilities, and that you REALLY need your PCP to guide you. For example, general inflammation markers plus low C3, C4, and CH50 might suggest rheumatologist (conditions like lupus can deplete serum complements). Low RBC's and low platelets: I think these can be seen in lupus and its close cousins, BUT also in certain blood disorders as well (hematology). Suspected adrenal insufficiency would likely be handled by an endocrinologist. i.e., you may need multiple "ologists".

    (Re "adrenal exhaustion", I believe it's controversial in mainstream medicine & is therefore only handled by alternative medicine practicioners.)

    NON-AUTOIMMUNE front. In contrast, Common Variable Immunodeficiency Disorder (CVID) features low IgG, IgA, and IgM... but in the absence of autoantibodies (I think). So if your doctors have already ruled out the autoimmunes, you could try the "Immune Disorders" board for advice. And if your doctors have already settled on CVID but you aren't getting anywhere? I'd look for national groups that maintain lists of doctors who diagnose & treat CVID. My guess is that they're mainly Immunologists. As for the tests employed, I don't know (sorry).

    But I think my #1 question in all of this is, Is my PCP guiding me down ALL the logical paths? If no, that's not happening, I'd look for a new PCP, and PDQ! Let us know what happens, OK? Wishing you good luck, sincerely, Vee

    Last edited by VeeJ; 10-19-2013 at 02:18 AM. Reason: added & clarified

     
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    Old 10-19-2013, 06:30 AM   #3
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    Re: Immune Dysfunction & Blood markers

    Hello Vee,
    We have been to many doctors. The "ologists" list is almost as long as the Pcp's, the "nets" casted provided many testings, various dx's, with a paper trail that has led us to the self driven patient research and proactive steps of learning about combined conditions suffered. PCP's, internal pcp's, endocrinologists, pulmologists, hematologist (who referred to an immunologist colleague who refused to do any further tests), oncologists, rheumatologists, allergists, dermatologists, naturalists, and yet to find an Immunologist specialist.

    Autoimmune conditions run in both sides of familial genetics, Immune dysfunction conditions like CFS and Fibromyalgia, hypogammagloblenima, cryogammaglobeniama, aggaglobelemia, Addisons Disease, Sjorgens, RA, PsA, Scleroderma are just a few.

    What complicated and or compromised our conditions were extended exposures to "toxic mold" and "soot puffback inhalation" during a one year time frame. There were also "medication" toxicity and 'adverse reactions", that necessitated multiple doctors for inquiry, testings, and treatment. (including De-toxification) The non production of Red Blood Cells, with No Killer Cells, and the abnormal IgG became a life or death scenario. The Oxygen levels were below 80%, and there was obstructed breathing.

    Yes ANA testings were done. Yes the IgG abnormalities were founded and there were NO ANTIBODIES. IgA & Igm were abnormal as well. We were treated with a vaccination to spark the immune system to bring up the blood levels. Though that helped, the failure to thrive is evident. I've questioned the possiblilty of CVID as the primary condition, yet not one physician has concurred, delved into, or done further testings on the CD3, CD4, & CH50. I've asked for those and T-cell bood assays to no avail. which is also why we've had to find other doctors outside of our past Pcp's (been through 4 Pcp's) However, we still have not found or been referred to an Immunologist Specialist, mainly because our area does not have any, or perhaps there is more to our conditions that we are not being told about. The Adrenal exhaustion occurred in 3 family members right after the medication toxicity of 1 family member, and soot exposure for 3 family members. Two of the members have multiple health related conditions, and one is a child. One is elderly, and 1 is disabled.

    Have the doctors 'Ruled out" Autoimmune deficiencies? Without those tests I don't see how they can rule out or diagnose. Its quite frustrating, so I've done just as you've suggested and have contacted numerous national organizations that has helped sift through the medical maze through the past several years. Researching multiple medical journals, and other research sites. With that however, many Dr's do not like an educated patient, who asks questions, or who asks for specific tests. Either way, the journey continues with or without solid answers. My research continues.

    The cumulative analysis of blood work testings over 5 years time, indicates Autoimmunity dysfunction, with symptoms that vary. CVID has been mentioned to the PCP as well as DNA testing. We are now at a standstill.

    Thank you for your response, its good to know that I'm on the right track, asking for the right tests, now to find the specialist that can help us.

    Last edited by yalwayssick; 10-19-2013 at 06:31 AM. Reason: omit-ion

     
    Old 10-19-2013, 07:42 AM   #4
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    Re: Immune Dysfunction & Blood markers

    I'm sorry you (multiple "you's", apparently) have been thru so much, tried so hard, yet are still looking for answers and help. I must stress that this isn't an area in which I have first-hand experience, so it's really just a gut feel on my part that immunology would be the logical "ology" to vie for.

    Why? Because I'd bet that multiple "ologists" have run ANA, because it's the cornerstone test for autoimmunity. (BTW, if you've have copies of the tests run, you could check that pretty easily.) And if ANA was run, esp. repeatedly, yet no autoantibodies were found, like you said, I'd also focus on flat-out "immune disorders" as opposed to "autoimmune disorders"... in which case hopefully the people on the "Immune Disorders" board could help by suggesting ways of locating an immunologist.

    As I said earlier, I believe "adrenal exhaustion" is a theory seen ONLY in alternative medicine. To be frank, when talking to the PCP, I'd not focus on it. Instead I'd stick to what's been found via the "mainstream" tests, as I think that might be more helpful in getting you an immunology referral.

    I hope you can make headway for all your family members affected.

     
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    Old 10-19-2013, 05:24 PM   #5
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    Re: Immune Dysfunction & Blood markers

    I agree with your assessment and with Vee that an immunologist is needed. Immunology is an incredibly complex area of medicine, and most PCPs and other specialists don't know much about it when it comes to immune deficiency states. I would seek a referral to your closest large University health care system, or get myself to the Mayo clinic in Rochester, if possible. Autoimmunity generally causes excess antibodies to self and is an overactive immune system that needs suppressed. You are describing more of an immune deficiency state, which is treated with IV immunoglobulins and treatment for infections resulting from the lowered immunity. Some people actually have both and have a mixture of autoimmune conditions and immune deficiencies. You need experts in these fields and truthfully will get no where with PCP's other than an immunology referral. But since you have so many family members affected in different ways, getting one person diagnosed accurately by the best of the best will help everyone indirectly. I would send the sickest member to the Mayo clinic with a more well family member as advocate and helper, and get to the bottom of this before a disaster strikes someone.

     
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    Old 10-26-2013, 08:28 AM   #6
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    Re: Immune Dysfunction & Blood markers

    In most recent updated research from the NCBI, it does appear that with Compromised Humoral Immunity, defective antibody production, lack of serum immunoglobins and circulatory B cells is a clear indication of X-linked Agammaglobulinemia and is associated with Community Acquired Pneumonia. (pneumonia vaccination was given to patient to spark the cellular production, IgG, Rbc platelets, and NK production )

    There has also been Germline Mutations in NFKB2 protein indicating noncanonical signaling pathway as a genetic etiology for this primary immunodeficiency syndrome. Affected individuals presented with an unusual combination of childhood-onset hypogammaglobulinemia with recurrent infections, autoimmune features, and "adrenal insufficiency". Demonstrating a CVID-like phenotype with hypogammaglobulinemia and poor humoral response to antigens. (course of manifestation in apparent symptoms are in conjunction with all the above) Genetic predisposition through genetic testings and model study have also been identified.

    Being that there is indeed familial associated aggamagloblinenima, hypogammagloblinemia, and other related Autoimmune disorders it would seem that with the ANA tests, and factors relevant to course of symptoms and condition...that there is a very real possibility of CVID.

    However, due to the rarity of Primary Immunodeficiencies, it can take years before getting the primary diagnosis for this disorder. My concern is that the delay in such dx may pose other problems.

    Last edited by yalwayssick; 10-26-2013 at 08:33 AM. Reason: addition to text

     
    Old 10-26-2013, 08:40 AM   #7
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    Re: Immune Dysfunction & Blood markers

    This sounds indeed like a very real possibility. I think you need a genetecist on your team of experts to do the genetic testing. Any possibility of going to the Mayo clinic? They do a superb job of intense diagnostics over a 1-2 week period to get the diagnosis and establish a treatment plan for you and your physicians to follow when you get home. With these genetic disorders, if one person gets the diagnosis, it provides the path to diagnose for everyone involved.

     
    Old 10-26-2013, 09:19 AM   #8
    yalwayssick
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    Re: Immune Dysfunction & Blood markers

    Quote:
    Originally Posted by ladybud View Post
    This sounds indeed like a very real possibility. I think you need a genetecist on your team of experts to do the genetic testing. Any possibility of going to the Mayo clinic? They do a superb job of intense diagnostics over a 1-2 week period to get the diagnosis and establish a treatment plan for you and your physicians to follow when you get home. With these genetic disorders, if one person gets the diagnosis, it provides the path to diagnose for everyone involved.
    LadyBud, Precisely! Conducive to the familial connections, where more than several have immune related dx.

    Unfortunately, no, we are not able to get to the Mayo Clinic. Although I have requested Genetic Testing from several physicians, yet there has not been any referral for such. Also, there has not been an established "team" nor is there a multidisciplinary facility in this area.

     
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