Results 1 to 5 of 5

Thread: Lupus and ...

  1. #1
    Join Date
    May 2010
    Posts
    980
    Thanks
    57
    Thanked 310 Times in 251 Posts

    Default Lupus and ...

    I'm not trying to diagnose anyone with this, just maybe point some folks, especially the men folk (it hits us more), at some information I found most interesting. I've been recently diagnosed with CVID, which is Common Variable ImmunoDeficiency. In and of itself, it's not bad, but it surpises me what the symptom "tree" for it is, and how it can lead to other diseases, including cancers & yes, even SLE. Open yourself a Google page or tab, and search on "CVID". The first 3 hits should be:
    Wikipedia
    Immune Disease dot com
    eMedicine dot com

    I've not read too much past those three. Here's an article I found today from a Feb 2006 issue of "Cleveland Clinic Journal of Medicine" (who?):
    http://www.ccjm.org/content/73/2/133.full.pdf

    If you were sickly as a child, did fine in your teens & maybe even twenties, got sick in your twenties/thirties, progressively getting sicker more often as you age (sort of like if you were in your later years, but way too early), maybe developed AI stuff, gastro stuff, neuro stuff, just a myriad of symptoms, check out CVID. Simple blood tests can find it, and why they don't do them arbitrarily for an AI person is beyond me... We'd have found this *years* ago.

    The sad thing is, once something is done, it's done. So if you've lost your thyroid from CVID, it's gone. However, if you treat CVID (plasma infusions), the damage can probably be slowed, or maybe even stopped. From what I can tell, some docs don't want to do the infusions, due to cost, and just treat the infections with anti-biotics. Other docs *insist* on infusions, because of the ramifications of not doing it. CVID has not been proven to be hereditary, but the genetics involved make that almost a certainty. In my case, it looks like I can blame my dad - again... First my looks, and now this... lololol

    As a lot of you folks on this site have found: EDUCATE YOURSELF, 'cause most of the docs ain't gonna do it...

  2. The Following 6 Users Say Thank You to jmail For This Useful Post:

    BonusMom (02-14-2011), Nonna (02-14-2011), Numpty (02-16-2011), rob (02-12-2011), SandyR (02-15-2011), tgal (02-14-2011)

  3. #2
    Join Date
    Dec 2009
    Location
    Atlanta Area - Dacula and Boca Raton
    Posts
    1,817
    Blog Entries
    12
    Thanks
    381
    Thanked 404 Times in 327 Posts

    Default

    I'm going to check this out with my endo. I'm more than curious. I had my last thyroid surgery about 10 years ago; that was my third one. The surgeon said he was going to use me as an example as to why completes should be done the first time. What you say above looks to be my life story. I made it to twenty seven before everything fell apart .

    Checking and educating,
    nonna

  4. #3
    Join Date
    May 2007
    Location
    Seaside, Ca.
    Posts
    3,871
    Thanks
    196
    Thanked 948 Times in 732 Posts

    Default

    It sounds a lot like me, too. However, my "good" rheumy in Texas asked for a very thorough lab work-up, which included a whole series of tests for the thyroid, and mine was all fine.
    These symptoms match fairly closely with Sjogren's, too and I did test positive for that.
    Hugs,
    Marla

  5. #4
    Join Date
    May 2010
    Posts
    980
    Thanks
    57
    Thanked 310 Times in 251 Posts

    Default

    The "scientists" and "doctors" are still studying CVID, and the whole idea of immunoglobulins and other blood protiens is all rather "new" as far as medicine goes. It wasn't until like the turn of the century that some guy "supposed" there could be issues with a person's blood, and I think it's like 1937 before someone experiments with it. It wasn't until the 70's before some of the various parts of the blood were "identified". They do NOT understand how it all works. What they "know" is all theory - remember, medicine is an art, and it's practiced, and I'm sure you all don't want to hear me do my violin scales, even though it's "art". I know the cat doesn't... She *runs* when she sees me get the fiddle out... lolol - Anyway, it's just something to ask your GP or PCP about next time you visit. I saw somewhere where the initial blood test is like $57 to do a total Ig count.

  6. #5
    Join Date
    Dec 2007
    Location
    Edinburgh, Scotland
    Posts
    144
    Blog Entries
    1
    Thanks
    4
    Thanked 5 Times in 5 Posts

    Default

    Sounds familiar here too so will check it out! Either way I'm always interested in reading up on things like that so thanks for the information and reading material suggestions!
    x
    Numpty:- (num-p-tee) dialect, chiefly Scot, ~n. 1. a bumbling fool: one who is intellectually challenged. 2. widely known in Scotland as an MSP (Member of Scottish Parliament).

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •