Sooooo Confused!

[cajunsis]

And I might not even belong here!

I will try to make this short... but...

I went to an ENT for chronic sinus infections

He sent me to an allergy Dr who just happened to be an Immunologist for swollen sinus' and assumed it was allergies.

After an hour of medical history, the Immunologist alerted to last 5 years of physicals that showed low Lymphocytes and high Monocytes, combined with my history and told me she thought my problem was immune.

Allergy tests were negative.

Tests on B cells were normal

Absolute levels of the T cells (CD3+, CD2+, CD3+, CD4+) were significantly decreased.

The T helper/T cytotoxi cell ration was significantly decreased.

The natural levels of killer cells (CD3-, CD16+ and CD56+) were above normal range.

The results of the immunophenotype demonstrated a decreased level of T cells and T cell subsets, and thus a decreased level of cell mediated immunity and T helper cell dependent antibody mediated immunity.

Whatever all that means. I am outta my league!

I had a Pneumonia vaccine that came back with good antibodies and I had a horrid reaction to it - so something is working, right?

The other DTP (?) test also came back with good antibodies.

She had told me that her pre-diagnosis is Common Variable Immunodeficiency, but until she had all results back it was not a positive diagnosis. This is after the DTP came back good, but the Pneumonia results had not yet been received.

I am so stinking confused! *Did I say I am outta my league?*

The nurse is honestly clueless assuring me "it looks like everything is coming back great!" The next day I got a call that I need to come in right away and the Dr tells me that my "alert cells" are non-existent and cannot alert my body to danger and it we have many, many more tests to take.

3 days ago, I had a conference with the Dr to help explain everything. The Dr told me that I had good immunities towards whatever the other vaccination (DTP?) was. She was waiting on the rest of the results, but the next step is to go to an infectious disease Dr because I am fighting so many infections. She then told me the tentative diagnosis was Common Variable Immunodeficiency, but it was only tentative, and that she felt comfortable enough to give me the name.

She said the break in the cascade is high up in my case where in most people it was much further down the chain. Whatever that means. (refer to in over my head)

Today I talked with the nurse again and she said the pneumonia shot came back with antibodies and "everything looks great!".

I am sick ALL the time; sinus, lung infections, gastro problems and I can't fight any of it without antibiotics no matter how long I drag it out.

Did those good reactions on my immunizations mean I don't have CVI?

I want to add here that I lived in Asia and in 2008 I received a buttload of immunizations and when she tested me for antibodies on some of them they were non-existent - as was my pneumonia antibodies before I got the new vaccination. She said it looked like I had never been in contact with pneumonia even though I have had it several times.

Any thoughts?


Thank you so much for reading! If you reply, terrific! I know no one is a Dr, but surely you know something about all this gibberish if you are here!

[elained]

Cajunsis, I have NO idea about those cells. My husband is an immunologist and over the years he has thrown those terms around, and I have always ducked.

When those cells were tested, all of mine were normal.

BUT, what wasn't normal were my immune factors: IgG and IgM.

And I didn't get immunity from the Pneumovax, well one out of 21 I guess.

But I'm SURE someone here will know what you're talking about.

So I will leave it to them to interpret your T, T helper and killer cells.

What does your Immunologist want you to do?

Hugs

Elaine (elained, North Carolina)

[s162216]

Hi and welcome to the forum,

This can all be a very complex time, and you can feel like your being over-loaded with information, so try and relax and we'll try to help you get through it, and perhaps also help you understand what your getting told a bit better.

Common Variable Immunodeficiency (CVID) literally a condition where the body is impaired, or reduced in its ability to respond to infection. The name actually quite simply gives away what the condition is like: its the most common diagnosed primary immunodeficiency condition (~1 in 20,000 to 50,000 people in the UK), its presentation is highly variable amongst patients as its actually a collection of about 50 conditions that have the same clinical outcome (reduced/impaired antibody production/activity) that at the moment at least cannot usually be differentiated between, and lastly it causes immunodeficiency.

Now the immune system is incredibly complex, and despite the amount of information we now know about it, we've still barely scratched the surface. In response to infection the body will produce antibodies (immunoglobulins) to flag the infection to other parts of the immune system to destroy.

In the case of CVID though there is a break or deficiency somewhere in the production line that makes or activates antibodies. B and T cells both have various tasks in the immune system, but both are involved in signalling to other parts in the antibody production chain and/or destroying an infection. A defect in either of these or a fault in any other place can make antibodies not work or not form. Imagine it as a production line with very strict quality control or faulty machinary etc. (The high up break in the chain that your doctor referred to could mean your actually producing the antibodies but their inactive as your T cells are ineffective for instance [as I said CVID is very variable])

Have you had any results for antibody (immunoglobulin) levels as that is usually how CVID is typically characterised? The main type (IgG) is usually much reduced, and the other types are sometimes as well. Unfortunately theres no real yes or no test for CVID as its so patient specific and its based on clinical signs.

This is the reason for the vaccination tests, they stimulate your immune system with the vaccine and then measure your antibody response against it, its not a definite yes or no to whether you have CVID, but its a pretty good indicator of your immune system. You'll have to wait for the doctors to decide on the results though as there are lots of other immunodeficiency conditions that can give similar results and the fact that you've lost your immunity to previous vaccinations could be a potential indicator of CVID, but I'm not the one to ask about that!

Has this helped clarify anything for you? Is there anything that you want me to re-word etc or you want to ask, I'm entirely happy to help. In case your wondering where I know this stuff from, I'm not a doctor, but I did recently complete a Pharmacology degree that included quite a lot of immunology theory (plus my shock CVID diagnosis 3 years ago enhancing inquisitive nature about the immune system!)

Now remember to take things one step at a time as you'll get through this.

Sam (Admin)

[elained]

YAY Sam,

51 years of marriage to an Immunologist have never produced such a helpful description for me.

Even the 'kids version' of the Immune System from IDF wasn't as clear to me.

Yes, it is complex, and the diagnosis is based upon lots of factors.

I have understood that the response to immunizations, especially with Pneumovax is often considered strongly in the decision.

I do know that my response was the last factor to be retested, and I was holding out hope that I would have strong immunity, in spite of other indicators of CVID.

Alas, with only one immunity out of 21, I have wound up on Subq. I say alas, because I preferred not to embark on the process of infusion. However, once I started, I found like so much of life, I've just incorporated it into my life.

Still waiting (one month in, only) to see if it affects how I feel. And of course, keeps away scary infections.

Hugs

Elaine (elained North Carolina)

[cajunsis]

Thank you so very much! Yes it explains a lot. Looking on the internet sure is skeery! You do a wonderful job of explaining, Sam!

I did find this: www.cdc.gov/vaccines/pubs/pinkbook/downloads/appendices/A/immuno-table.pdf

It seems to show my positive immunity tests can still mean one form or another... from what I am seeing, I think I could still have some sort of immunity problem. I don't know how long until we have a final diagnosis, but I will keep you posted. She took a lot more blood Wednesday. I think I have given more blood than I had! I bet they have drawn at least 50 vials since all of this started.

As far as I know, I am waiting for the final results of the rest of the tests, then she said they will get me an appt with an immunologist - should be in a couple of weeks - to start helping me with the constant infections.

We shall see.

I forgot to put my name on the last post,

Euvah (YOU-vuh)

[elained]

OH Euvah, I know what you mean about giving more blood than you thought possible.

When I had the really BIG bunch of tests for auto immune conditions they took at least 15 syringes of blood. It was amazing.

Fortunately, I don't mind much of anything any more, having been through the 'mill' of medical procedures, primarily in the past 15 years or so.

I hope there are some 'answers' for you.

Being sick all the time is the pits.

I've suffered more from auto immune conditions (part of my CVID) and some idiopathic things like peripheral neuropathy and anemia. I've only had the illness frequently in the past two years, just after the Immune Deficiency was identified, oddly enough.

But I have severe osteoarthritis, so anything that causes inflammation (autoimmune attacks or infections) gives me serious pain.

However, we all cope as we can, and my time on medical forums has taught me how simple my issues are compared to many I've met here.

My mantra: It's always something, and then it's something else".

Hugs

Elaine (elained, North Carolina)

[glowing]

Hi Euvah,
I too want to welcome you to the forum. I was diagnosed just over two years ago and am still trying to get my head around it. So many people seem to understand far more about cvid than I do. Luckily we have Sam who never tires of explaining everything, as you can see. Good luck with everything and just like the rest of us - try and stay well.

Glo

[cajunsis]

Thanks for the welcome, Glo.

The Dr called me today and said given my great results with the titers, she is "cautiously not going to label me with CVID YET". She said she knows I have an immunity problem, she knows what I have is rare, but is having trouble trying to figure out what it is. She told me that the immunity system is very complex and she has not seen this set of test results before and neither have the colleagues that she contacted. She is referring me to an infectious disease Dr who will work to control my continuous infections, she will consult with more Drs and see if they can come up with a diagnosis and until then, she said to come back in November for a check-up and in one year come back to check my immunities to the vaccinations that she gave me. She suspects I will have lost the immunities by then and it will answer some questions...

Sooooo, basically, I still don't have a clue as to what is going on.

But I am not diagnosed with CVID yet.

Euvah

[s162216]

Sad fact of most immunology conditions, theres no automatic yes/no test. In CVID for instance, nobody knows any of the genetic mutations (apart from in 6 rare forms) that cause the various forms of CVID (as I said there are different forms but at the moment its not possible to distinguish between them as the ultimate differences are unknown) so you can't use genetic testing like you can for certain other immunology conditions such as XLA or SCID which have clearly defined mutations.

I hope that you stay well and manage to get at least some answer soon.

Sam

[cajunsis]

So here goes... I was positively diagnosed with Idiopathic CD4+ Lymphocytopenia. Basically, I was told "no help, no cure, good luck".

If you look it up on the internet, you will see there is a 'good prognosis' "as the CD4 count doesn't drop as rapidly as that of an AIDS patient".

NO I DON'T HAVE AIDS or HIV! I am HIV negative; confirmed by the CDC.

However, CD4 count is well below the 'critical' level of 350 - my last total CD4 count was 41 - which is not good news. There is nothing that can help - no magic potion, no infusion, no transfusions; they did try bone marrow on 2 patients - both died. Since my CD4 count is so low, my prognosis is not as good - but who knows? I am not giving up.

I am one of 45 patients known to have it in the states. 2 years ago they started with 58; the CDC told me that they have 'lost' 14 due to opportunistic infections/cancers; one was in his 80's, the rest 55 and below.

So that is what I know. I have already been to National Institute of Health in Bethesda MD - for help and knowledge. I am in the study, but there are no clinicals going on at the time.

Not sure if I even still belong here - but there are no support groups for people with IDC.

And so it is...

Thanks for the moral support everyone,
Euvah

[s162216]

Hi Euvah,

I am so sorry to hear about your condition, and almost feel ashamed that I'm able to get an effective treatment for my PID whilst you're left with nothing. I really hope that things go better for you, and they are able to find at least even just a basic treatment to help.

As to whether you belong here... well IDC pretty much meets the definition of a PID and we welcome all PID conditions here. We'll all try to be as of much help as possible as I can't even imagine how it must feel to be in your position, and I would be wanting as much support as I could get. We're all here for you.

Sam

[glowing]

Hi Euvah.
How awful for you. As Sam said, we're all here for you when you need to talk.

Glo