Immunodeficiency

[Deb 27]

So, a few weeks ago, I noticed there is a trend marked on my white count and it's been heading down. I was wondering if my doc had seen this but I was surprised that no one has mentioned it to me. Then today, I noticed they said I had immunodeficiency. I asked why that was on my chart via e-mail and they said that  I really wasn't immunodeficient b/c my white count is still in the normal range. They had just flagged it to keep an eye on it.

Still, I think I should have been informed and upset that they didn't at least mention this to me. I've had a lot of infections this year and now I am a little worried it's going to keep dropping and  if the lower white count  isn't the reason I've gotten a lot of infections this year.

Any thoughts on this???

[irish]

Have you been keeping this doc in the know about your infections?? Are you getting antibiotics all the time for your infections? I think that it is good that your doc is watching this and has it flagged. I have two immunological diagnoses and I was sick for many years with infections. No one paid any attention to me or even thought to check it out. In fact one doc gave me heck for coming in for antibiotics for infection. He even asked me if it made me feel better. I said yes but they were clueless.

I did not get diagnosed until my new immunologist did a whole much of blood work and they showed up. It was mind boggling for me and even for them as I was severely deficient in t-cells.

I guess if it was me I would question this doc about what the criteria was for immunodeficient issues and ask him what his plan of action was. Could also ask why he didn't say anything to you. Many docs will say that they don't want people to worry until it is actually a true diagnosis. I don't know what they could do at this point and time anyway as you are doing a downward trend not a true deficiency. Also, ask him how many infections a person needs to have.

I had some really ugly infections plus MRSA and mycobacterium infection and not one doc at the time wored about me having a deficiency. It is good your doc is watchful. Good luck. Irish

[Deb 27]

Thanks for the reply Irish! Yes, I've received antibiotics when I had the UTI's and anti viral when I got the cold sores. They originally thought they were the shingles. I have not seen an immunologist. Are you over in Europe?

  Well, they say they didn't tell me because it was something just for them to keep an eye on. I think it was a bit negligent. Perhaps I will make another appt with them. I am disappointed as I think they should have done some more testing. Goodness, it's always something, isn't it?

[irish]

I am in the US and was referred to an immunologist in 2006 when a lot of my issues were finally diagnosed. I think that immunologists have a more thorough understanding of autoimmune and immune issues plus allergies which occur very frequently in most of us. Good luck. Irish

[Deb 27]

Thanks Irish. I'll talk to my rheumy.  I bet I'd need a referral to see an immunologist.

[Carolina]

Hi Deb,

There are three conditions that describe Primary Immune Deficiency Disorder:

1.  significant measured deficiency in at least TWO antibodies:  IgG, IgA, IgM, and I guess IgE, tho' I never hear about it.  (There are other Immune Deficiencies or Dysregulations, but deficiency in two of the major antibodies is usually of prime importance.)  So you need to start examining your antibody numbers.

2. Failure to mount an adequate level of immunity from the 21-23 strains of Pneumonia in the administered Pneumonia vaccine.  You will be tested about a month later.  I developed barely measurable immunity from 6 of the 21-23 strains of pneumonia in the vaccine.  This test was administered twice.

3.A history of illnesses and hospitalizations from infections, viral, bacterial, fungal, etc.  ;A history also of childhood allergies, eczema, etc.

As a general rule, you supply the data relative to your illnesses and hospitalization.

Until your antibody levels drop below the measured amount in the criteria for deficiency, and before you are tested for Pneumonia vaccine immunity, and present the required health history, you are in the 'watch and wait' level of treatment.  You should, of course, track your illnesses, your treatments, etc.

I know it is hard to think you can't immediately have IVIG, when you are often ill.  But if your illnesses can't be help by IVIG, that would be a waste.  And for me each IVIG treatment (every four weeks) is billed at about $14,000.  And that is just for the liquid in the IV bag.  I am treated in a huge Duke University infusion center, with nurses, doctors (on call) gobs of expensive equipment, all taking up space in a large Medical Center.  The entire cost every 4 weeks is billed at about $18,000-$20,000.

I'm glad you found us.  I for one had no idea I had CVID, or PIDD.  I didn't even know what it was.  The thought of the complications of IVIG and possible side effects, added to the outrageous cost made me reluctant to aggressively pursue treatment.   But another year of illness changed my mind.

Keep us posted on your journey.

Regards, Elaine