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Primary immune deficiencies, IVIG, Lyme, XMRV, etc

Discussion in 'Immunological' started by IntuneJune, Oct 23, 2009.

  1. IntuneJune

    IntuneJune Senior Member

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    I just arrived at this site, my hats off to the "founders," this community is so impressive. (Please advise if this post is in the wrong place....slowly learning my way around and I have lots to learn.)

    Three years ago, I was diagnosed with a Primary Immune Deficiency, specifically common variable immune deficiency and have been treated for two years with intravenous immunoglobulins given every three weeks. By the way, primary immune deficiencies are in the genes

    Over 25 years ago, I was DIAGNOSED with FMS, the rheumatologist's first patient to be diagnosed with fibromyalgia. She had just returned from MCE conference and had taken the workshop, "fibrositis."

    Prior to that, our young family went camping a lot, living and camping in the NorthEast. I had (at the time) the oddest rash on my back noted by a chiropractor, "it looks just like a bull's eye."

    Fast forward, years, years late, after lyme had been "found" the rheumatologist ran a lyme titer, which came back negative. "You don't have lyme.

    In a primary immune deficient patient, our titers do not return postive, as there is a dysfunction in the immune system and it does not respond.

    Now XMRV has arrived on the medical horizon.

    Is it possible, my primary immune deficiency did not come solely in my genes, but brought on by an undiagnosed culprit, possibly a tick bite and then developing an undiagnosed lyme disease, which has now, after all these years and years, dug itself deep, hiding and evading all testing?

    Any thoughts, anyone???

    Thank you again! June
     
  2. Alice Band

    Alice Band PWME - ME by Ramsay

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    June,

    What proof did you ever have their your "primary immune deficiency" was ever in your genes.

    Did you ever check to see what classified diseases had the same test results?

    What were your tests?

    The ACOR criteria for Fibromyalgia was from 1990. If you were diagnosed 25 years ago you may not "even" have Fibromyalgia.

    Lyme tests are notoriously unreliable for everyone and there is a great deal of debate over how to test and treat. If you want to go down the Lyme route you need to see a doctor that specializes in it. I've known people to do this and finally get a positive test and then treatment - it can work for some but for others it years of extra suffering with no result.

    Hope that helps. Just a few ideas.
     
  3. IntuneJune

    IntuneJune Senior Member

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    Alice re PID, Lyme etc

    Thank you for your reply Alice.

    I was followed by the same rhuematologist for 25 years, she ran all the appropriate tests, and I was/am a classic fibromyalgia patient. The name/syndrome fibrositis (way, way back then) was then changed to fibromyalgia because it was determined that the patients fittting the critiera for the syndrome were better described by the name change.

    The next five paragraphs are from the Immune Deficiency Foundation site explaining immune deficiencies.

    "Nearly everyone has suffered from colds, the flu, or sinus and ear infections. Just as many have been affected by cuts, scrapes and abrasions that become infected. Even in the case of more severe infections - such as pneumonia - we expect the cough and congestion to 'run its course', aided by prescription antibiotics, over-the-counter symptom remedies, and our body's own immune system.

    Recovery times vary, but the human body can usually rid itself of the infection-causing germs, and work to defend against future "bugs" and viruses. There are, however, instances in which the body cannot recover, and some of these apply to individuals with a primary immunodeficiency disease.

    Primary immunodeficiency diseases occur in persons born with an immune system that is either absent or hampered in its ability to function. While not contagious, these diseases are caused by hereditary or genetic defects and can affect anyone, regardless of age or sex. The World Health Organization recognizes more than 150 primary immunodeficiency diseases - some are relatively common, others are quite rare. Some affect a single cell within the immune system; others may affect one or more components of the system.

    And while the diseases may differ, they all share one common feature: each results from a defect in one of the functions of the body's normal immune system. Because one of the most important functions of the normal immune system is to protect us against infection, patients with primary immunodeficiency diseases commonly have an increased susceptibility to infection.

    The infections may be in the skin, the sinuses, the throat, the ears, the lungs, the brain or spinal cord, or in the urinary or intestinal tracts, and the increased vulnerability to infection may include repeated infections, infections that won't clear up or unusually severe infections. People with primary immunodeficiency diseases live their entire lives more susceptible to infections--enduring recurrent health problems and often developing serious and debilitating illnesses. Fortunately, with proper medical care, many patients live full and independent lives." From the Immune Deficiency Foundation.

    Me again....."These deficiencies are heriditary or genetic." We have posters we use for the IDF fund raising which state, "its in the genes."

    It seems you researched PID, that would not be specific enough ,I believe, for a code, there are many, many PID's, coded by the specific deficiency I would assume.

    Yes, I have contacted the Lyme folks and am considering evaluation by a Lyme specialist, however, testing may not be valid in my case and a moot point because of the immune deficiency.

    Thank you for your concern. June
     
  4. Alice Band

    Alice Band PWME - ME by Ramsay

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    Thanks June,

    I did find the bit that you posted before I replied.

    What specific tests did you have that confirmed your diagnosis?

    I just wanted to see if they corresponded with any common tests in CFS, Lyme etc?

    Time does move on and opinions change.
     
  5. IntuneJune

    IntuneJune Senior Member

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    Immune deficiencies

    Immune testing for immune deficiencies.

    Total IgG, IgG, IgA, IgM, subclasses IgG 1,2,3,4, kappa, lambda.

    I was deficient in total IgG, IgM, kappa, IgG 3.

    It would be great if this profile set some bells and lights off!!! Anyone???

    A Beth Israel physcian recently stated common variable immune deficiency is now thought possibly to be a T cell dysfunction.....this is being studied more closely.

    Thank you! June
     
  6. Gemini

    Gemini Senior Member

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    June, do you follow patient postings on the Immune Deficiency Foundation's site, www.primaryimmune.org by any chance? For years many CVID patients in that discussion forum have indicated they have CFS besides PID. It's too soon to know the significance of this recent scientific finding, but it's quite interesting to note XMRV affects T-cells, B-cells and NK cells.

    Gemini
     
  7. IntuneJune

    IntuneJune Senior Member

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    Gemini, IDF, B and T cells

    Thanks for posting Gemini, yes I do visit the IDF site. Also, last year, attended a good-sized immune deficiency meeting where doctors spoke and also participants had time of mingle and talk. I said to my husband, take away all the talk about immune deficiencies, (ie infusion products, infusions, testing etc) and we would have sound like an CFS/FMS support group meeting.

    My immunologist said they are taking a closer look at T cell dysfunction.

    This is a very old thread, had you searched for primary immune deficiencies? Since you are familar with the IDF site, are you or a family member affected by PIDD?

    Also your name, were you born in June by any chance? My BD is in June, therefore it is part of my name here.

    June
     
  8. aquariusgirl

    aquariusgirl Senior Member

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    Hey June
    would love to hear how those IVIG infusions are helping you?
    This is a txt that is used in the autism community. Often wondered if I would qualify for this, but fear that my immune profile may have improved too much on the yasko protocol to be eligible.
     
  9. IntuneJune

    IntuneJune Senior Member

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    IVIG infusions...

    Yes, they help a lot. The infusions help fatigue, more energy, a sense of being stronger which is a nice feeling, thinking clearer, not feeling sick all the time.

    Now, IVIG is never given for the above reasons.

    There are numerous PIDDs and blood profiles vary but there must be a deficiency and a poor response to vaccine challenges.

    Insurance companies do pay but sometimes it is a fight Unfortunately I will be going on Medicare and I will have a greater fight on my hands. I cannot fight infections, Medicare does not cover charges unless the IgG goes below 600 (I was told this by the manager of the Infusion Lab I use. ) I am sick at 1000. Very sick at 800. This is a life-threatening situation.

    June
     
  10. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Another interesting topic on the immune system, i have had immunoglobulin tests done a few times as well as lymphocyte sub sets. Have always had elevated IgG and IgA. So my immune system has always been activated. But i always wondered if your immune system was low it would struggle to produce antibodies to different infection which would cause negatives to alot of infectious testing, mmmm interesting subject!!
     
  11. IntuneJune

    IntuneJune Senior Member

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    Heapsreal,

    You've got it!

    June
     

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