Immune Deficiencies and The Difficulty of Diagnosing AutoImmune Conditions

[SjoDry]

Hi Sjoggie-Mates.

I mentioned yesterday that I am researching biologics (seeing my Rheumy on Monday). One of the other forums I am part of is the Immune Deficiency Forum. The IDF posts their conference presentations on their site for FREE. So I listened to 2 separate sessions today. One was CVID by Dr. Marc Riedl and the other was a panel of docs and the session was: FAQ of CVID. Specifically, the doc I am referencing from the panel is Dr. Charlotte Cunningham Rundles.

I am mentioning this because I know that there are some of you out there that test negative for AI conditions..who may also be (immuno-deficient)or could possibly be..but don't know for sure. Dr. Riedl referenced the difficulty in diagnosing AI conditions because of the lack of intrinsic antibody production. I thought some of you might find this interesting. If you would like to hear this discussion and don't want to hear the entire presentation, you may find it here: https://idf.confex.com/idf/2015/webprogram/Session1008.html    Fast forward to spots 38:09 and 35:20.

Also, if interested, Dr.Rundles (one of the leading immune deficiency docs/Immunologist) talks about her preference to specifically treat CVID patients with Rituximab and why. If interested, you can follow this link and fast forward to the 47:35 mark in the presentation. https://idf.confex.com/idf/2015/webprogram/Session1031.html

And finally, if you go to the IDF site where it has the conference sessions, there are others that might interest some of you. One is Autoimmunity and Immunodeficiency, What's The Relationship? Here is the link for the list: https://idf.confex.com/idf/2015/webprogram/alphabetical.html

I just thought some of you might find it interesting.

Take Care.
SjoDry

[Judie P]

For those of you who do not know what CVID is:

Common variable immune deficiency (CVID) is a disorder that impairs the immune system. People with CVID are highly susceptible to infection from foreign invaders such as bacteria, or more rarely, viruses and often develop recurrent infections, particularly in the lungs, sinuses, and ears

Sounds like us Sjoggies.

[SjoGirl]

Thank you very much. I know that my white counts are typically low and I am more vulnerable to illness as a result. How is one diagnosed with immune deficiency? Do you have to see an immunologist and what type of tests are run?

[SjoDry]

Sjo,

Typically, you would see an Immunologist (though some Rheumies and other docs will do the labs). Aside from the detailed medical history and physical exam, they would do blood tests and vaccines that test the immune response.

The blood tests can determine if you have normal levels of infection-fighting proteins (immunoglobulin) in your blood and measure the levels of of other immune system cells.

Most immunologists will give the pneumovax vaccine to see if a person can build protection against different strains of bacteria. I think there are different numbers of bacteria in the pnemovax vaccines. For instance I was given the pneumovax 23. Then you wait (I think it was 6 weeks) and go back to be re-tested. I was unable to build any resistance to all 23!

I'm not sure if I explained that correctly..you should probably google it or check with some of our smart nurses on this site.

Hope that helps.

SjoDry

[Nomad]

I'm going out of town in the morning for a wedding and need my rest....probably wont be able to check those links right this momrnt, but what a GREAT topic/thread. Thank you.

I've had lupus for decades, Sj. Syndrome for perhaps 4 or 5 years.

I have a slightly lowered IgG test score and one of my subsets was also a little too low. I can't recall the details. This was picked up a few years ago.

A few years ago, whenever I was around my grandsons little cousins, I would get sick and often would get a sinus infection.

I suppose in retrospect, I may have had a teeny tiny tendency to get sick easily for decades. HOWEVER, nothing like it was two years ago or so.  I thought I might have CVID, but didn't truly fit the criteria.

HOWEVER  (and this is a huge however) I discovered that simply by taking OIL OF OREGANO when around sick people, flying on a plane, when around day care age children, or if I have any symptoms of a cold...I can and have DRASTICALLY REDUCED  my colds and have had (knock on wood) no sinus infections for a long time.

This does require awareness and diligence, but it is a small price to pay. I don't take the OIl of Oregano daily nor do I take a high dosage. It has been pretty much a MIRACLE and many others I know do this and it has blown them away.

BUT BUT BUT, of course I wonder what in the world caused this slight deficiency in the first place and might it worsen??? I don't know what caused it. I don't know if it might get worse. I have no clue what happened or is going on. (Although I'm thrilled otu of my mind that the colds are much better and the sinus infections have basically stopped)

Has anyone had this happen to you...where your immunity worsened in your 50s?

As soon as I am able, I will check the links.

Many many thanks!!!!!

[Sharon]

Thanks for raising this important topic SjoDry!
I've suspected something additional is wrong with me for awhile,
but the regular IGg variant tests came out okay.
I've been searching for a good immunologist for awhile now to run more tests and get to the bottom of it.
What I did notice was when I took antibiotics for a salivary gland infection my sinuses, headaches, general stuffiness, dizziness, and some gastro issues cleared up! I was feeling so flu-like for a long time before the antibiotics and thought it was the SJS! So...I guess hidden infections may be responsible for some symptoms.

Nomad- I second your support for Oregano Oil for treating infections or perhaps strengthening our defenses: When I had the salivary gland infection the antibiotics didn't do a thorough job of clearing it so I began pulling with oregano oil and swallowed oregano oil each evening until it did the job.
 

[Jasper]

Thanks for posting this link.

There is a wealth of information in those various presentations.

I don't have CVID or any type of immune deficiency (that I am aware of) but the sessions still contain a great deal of very useful information for me.

[irish]

Just my opinion! I do believe that everyone who has a possible or for sure autoimmune disease should have testing for immune deficiencies. The reverse is also true---the people with immune deficiencies should also have a certain amount of testing for autoimmune diseases.

I did research many years ago when my brain was working better and the relationship between the autoimmune, immune and allergies is so intertwined and yet this gets missed. I was so lucky that my doctor tested me for both and surprised me with my severe t-cell deficiency plus some low IgG levels. Who would have thunk> Good luck Irish

[Nymph]

A couple of years before I was semi-dx'ed with Sjs I investigated CVID and had the IG panel. I was having many sinus issues at the time, as we have all experienced. Mine were normal except for elevated IgM. Now I have seen that's a marker for Sjs. This is still an interesting area for me, though, as I continue to be quite susceptible to infection. It has improved since I started taking probiotics. Some work better than others. I will add the oil of oregano when I am around my little nephews for Christmas. Thanks for the tip!

I will check out the video on AI-CVID connection. Sounds interesting.

[Nymph]

The autoimmunity and immune deficiency presentation is fantastic!