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Discussion:
Newly diagnosed & have questions!
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Hi! I was just diagnosed 2 weeks ago & I find myself in the odd position of actually being happy to have something- or at least knowing the name of the something that has completely ruled my life for so long! I'm wondering if anyone else has had to fight their drs for treatment?

I've been chronically sick for over 6yrs, w/ the last 2yrs being pretty bad. I've had pneumonia every year of my life, but 6yrs ago I started getting chronic bronchitis/pneumonia for months at a time, & now I don't go more than a few days w/out getting it again- I haven't gone more than 4 days w/out a raspy voice/cough/fever/aches/mouth sores in over a yr. I barely function anymore, have to use oxygen a few days/wk & my husband hasn't been able to work a full week in years, because one of us must care for our special needs son, & I can't get out of bed most days. My wbc, rbc, platelets, neutrophils & IGG 1's have been super low for years (progressively getting worse), yet they have given me no treatment, including antibiotics ("I don't want you to become resistant"!)- the theory was that if they wait long enough, I'll eventually get better. One dr even suggested I change my hairstyle, so I'd feel better about my life & then my levels would improve.

My HMO has stepped in and forced a referral to a specialist & last month I finally saw the triage unit for the Infectious Disease/Immunology team at UC San Francisco (they spearheaded the research/treatment for AIDS in the '80s). They took one look at my lab history (especially that I have no antibodies to pertussis/tetanus/pneumococcal/rubella & the levels actually got worse after vaccination) & diagnosed me w/ CVID. They sent me back to my pcp w/ instructions to do a bunch of tests, which would determine if I qualified to treat further w/ them, & what kind of treatment to proceed w/.

Got my labs back today & I just want to cry. I finally get someone to listen to me & for the first time in 6yrs, my levels come back pretty much normal- mildly low wbc & neutrophils abs. The IGG 1's are still in the low 500's, but all the T & B lymphocytes were perfect. They have drawn my blood every 6wks for over 6yrs, & not once have they been close to normal, yet they have magically improved now that it's time to consider treatment (** just want to note that I have NOT recently changed my hairstyle, although I won't be surprised if that is not somehow attributed to the improvement!!!).

I am absolutely terrified that now I'm going to get stuck back in that pattern of "let's just watch & see". My pcp is very hesitant (obviously!) to "take any unnecessary action", so refuses to do anything unless instructed by the specialist. She just informed me that she now feels justified not treating me, 'cause obviously I have the ability to get better on my own- 6yrs of being sick w/ crappy labs, & one fluke reading gets to be the determining factor in my healthcare! I know I shouldn't second guess what the specialist is going to say/do, but I guess I'm just so conditioned to have to fight for anyone to acknowledge that something is wrong, much less that they should treat it.

Anyway, I would love any advice &/or info anyone has on what the requirements are for qualifying to get treatment to boost my system. Even though we had no idea why I was always sick, I have BEGGED for ivig treatments, but was told they are only for really sick people, like cancer patients. Apparently, having bronchitis 6 - 10x/yr isn't sick enough! I've googled this to death, but I can't find anything about what the typical T & B cell levels are when you have CVID- if the levels are normal, does that mean you actually don't have this? Thanks!!!
Posted on 06/02/11, 02:07 am
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Reply #1 - 06/02/11  8:05am
" Wow. You have been through the ringer girl. Many of us here, including myself, have spent years wasting time and life to get a diagnosis. You need one bad, and I believe with the right doctor you should get one. The problem is getting the right doctor. It sounds like you were given the correct diagnosis at UC San Francisco. Just the number of infections you are getting alone, should be enough for treatment I would think. Can you go outside your HMO and see someone independently? I don't know too much about HMO's so I don't really understand much about referrals etc. But, it sounds like you need to ditch this crazy doctor who is witholding treatment from you. No antibiotics?? What must you do to qualify for them, lay on the floor and die?

I feel really bad for you. Have you gone to the IDF website? If not, you should visit there and look for help from them. They can suggest doctors and help you get some clarity on what is going on. Get a new hair do???? I am indignant hearing that. What restraint you must have shown with that bombshell. I have run across some really bad doctors and some very good doctors, but I have yet to hear something so rude and insensitive. I was told that I was bipolar, depressed and needed shock therapy, but never anything so silly as to change my hair. Gawd, the insanity of it.

Hold on to that diagnosis like a prize and continue to look for a doctor that has a clue. The IDF should be able to help you with that. I am so sorry for all that you have endured. I agree, it sounds like you need IVIG. You have already passed the diagnostic stage thank God, but now you must get another doctor for help. It's crazy, you have an established diagnosis now and that should be enough to begin treatment. IVIG is not just for cancer patients. There are many reasons that people receive IVIG that don't appear to be 'really' sick, whatever the hell that means. The fact is that most of the people that are getting infusions seem to be fine and allot of it is due to the fact that they are getting their infusions on a regular basis. It helps them.

Forgive me for rambling on, but your story has struck a nerve big time. I think your non-treatment is outrageous. You should get lots of responses on this board, many of them more technical than mine. Welcome aboard here, and I hope we can begin to help you. You are not alone. "
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Reply #2 - 06/02/11  9:46am
" From what I understand we still make T & B cells, they just don't work, so I am not surprised they are normal with your labs. The final in diagnosing CVID is to give a pneumonia vaccine challenge - you get the pneumo and tetanus shots, wait 3 weeks then draw your labs again and see if you have a response - if not then that with your low igg should be enough to dx you with CVID. What are your IgA, IgM, IgD? Typically, we are low in at least one of those as well. I would find another PCP honestly. If I remember correctly, my HMO has a certain level of IgG before I can be treated as well, mine was much lower than 500 so it was not a problem for me. Good luck!! "
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Reply #3 - 06/02/11  5:06pm
" Hi Stacey, and welcome to the group! It really does sound like you've been through a lot, I'm sorry for the way you've been jerked around by doctors. Many of us have similar stories, and it's normal to run the gamut of emotions when you finally get that diagnosis. Mine ranged from excitement that there was a name for it and I wasn't just a crazy hypochondriac to anger over all the ridiculous things that prevented my diagnosis earlier, so fear and depression over the disease itself. I think that's all a normal part of dealing with something this big.

The others mentioned the IDF webpage, and I thought I'd give you the link: http://www.primaryimmune.org

This group is wonderful and there are many helpful people here. I hope that you get the diagnosis and treatment you need in the medical system, and get the emotional support you need here. :) "
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Reply #4 - 06/02/11  10:51pm
" my daughter and have congential cvid been sick our whole lives...just saw new immune doc at kirklin clinic in bham...after 5 yrs of ivig replacement my numbers are up but i am still getting sick i am now on higher ig went from 45 g every 3 wks to 55 g every 3 wks and i am on anti b rotation everyday for at least 6mths...the immune doc's thinking my numbers are up but immune system still not working correctly...bumping the ig and daily anti bs to try to get what i do have working better so even if your numbers are up he explained that they may not be working correctly just because i have it doesnt mean it working...not his excat words but close enough....

good luck it took my daughter and me awhile to get dx for yrs they thought we had lupus just didnt test for it....we have a family history of immune disorders it just took them some time to figure out what one we had....i do ig replacement she has not started yet she is still able to get by with anti b rotation...she is doing ok with anti b rotation but the deal is if she starts getting infections frequently she will start ig replacement she is trying to get thru pharm school first...but after me living with the damage from repeated infections she will begin ig replacement when she gets frequent infections...
good luck...... your story sounds like a familar story unfortunately "
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Reply #5 - 06/03/11  6:21am
" Hi, Stacy. Welcome to the group. I am so sorry that you have had to go through what you are going through. And I know how hard it can be dealing with an HMO. Trust me on this: it can be really hard dealing with a PPO, too. :-(

I too have leukopenia as well as hypogammaglobulinemia. Leukopenia is not really a criteria for CVID; low IG is. Some of us have really high white counts; others really low. People with primary immunodeficiency have compromised immunities and that can show up in a variety of ways, including auto-immune diseases. I was told not to pay attention to my white blood count unless my neutrophils consistently drop below 1000.

I have Cigna, and their criteria for treatment is to have proof of chronic infections requiring multiple courses of antibiotics, a consistently low IG count, and limited response to vaccines.

HMOs should have patient advocates; I would contact your advocate and ask for help with your PCP. At the very least, you need a PCP who will aggressively treat your infections.

Good luck and hang in there. It took me 18 months to qualify for treatment through mu insurance; you just have to be tenacious.

Tina "
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Reply #6 - 06/03/11  6:46pm
" Welcome.

HMO's can be hard to deal with. But the good news is that they were the ones forcing the referral. BONUS. Call them and see if you can get released from you PCP. They have to approve you going to another one. At least ours did when we had an HMO. I'm guessing they will be okay with it.

As the others have stated we are all different. ie....Variable

I have leukocytosis: High WBC's. My B & T cells are eleveated and was told not to worry about it. I still make them, they just don't work.

Keep pushing for your own health girl. We all do it on a daily basis. It took almost 20 years of me being sick and then a cat bite for me to get diagnosed. Docs just don't know that much about it and then are afraid to commit to that as a diagnoses because they don't know how to treat us. I'm referring to PCP's here.

Also, HMO PCP's get a kick back for not referring you out. It would be my opinion that your PCP does not want you to be seen by a specialist because he/she losses money.

Hope is gets better "

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