Anyone Else with CD4+ Lymphocytopenia Here?

[cajunsis]

I have been looking for ANY one that has the same diagnosis I have... CD4+ Lymphocytopenia. Apparently, there are only 45 of us in the United States known to have it. And yes, I have been positively diagnosed through the CDC and with the National Institute of Health (where my statistics came from). I am a patient at NIH.

There are slim picken's, but I am trying to find one of the 44 others out there with it. It is a scary diagnosis, and I do have problems and I would like to chat about with another that has this.

I finally found a Dr here that would treat me. No one knows what to do with me unfortunately - other than treat me for infections. Thank God I found one after being refused by 6 other Drs.

So, looking for someone with CD4+ Lymphocytopenia. Anyone?

Euvah

[s162216]

Hi Euvah,

I tweeted this thread to the Immune Deficiency Foundation asking if they could be of any help in locating someone. They tweeted back recommending to try looking on their IDF Friends community, which is a private social network dedicated to those with primary immunodeficiency conditions. As obviously there are only 44 others in the US, which might make finding someone else on there with your condition difficult, they also recommended contacting them, and asking to see if they had anyone that you could directly connect with via their "Peer Support Program".

I really hope that you're able to find someone, if your still unable to then feel free to post back here and I'll do my very best to locate somebody for you. I have contacts in the UK patient support organisations as well, so I might be able to locate somebody with it over here (which should be better than nothing).

Sam.

[cajunsis]

Thank you so much for that Sam! I just e-mailed the Peer Support Program and will jump on their board now. I appreciate it. There is just no one out there that I can find that has this.

Thanks, again!

Euvah

[hlh]

Hi there,

My father has lymphopenia. In his situation - all of his lymphocytes are low. This includes CD4 cells, CD8 cells and CD19 cells. They fluctuate some. His doctors don't know what to make of it, and as best as we can tell there isn't much you can do except treat infections aggressively when they come. Our plan has been to consider starting prophylactic antibiotics if the CD4 cells drop below 250 and stay there. Our doctor is most concerned if the total lymphocytes drop below 500. I assume if/when that happens, he would also start prophylactic antibiotics.

He also has "specific antibody deficiency". He has pretty good levels of immunoglobulins, but he doesn't always make specific antibodies well in response to a challenge. So when they tried giving him the Pneumovax immunization, he didn't make many antibodies too it. There was some discussion years ago about starting him on IVIg, but since it is so pricey and he wasn't really getting any infections at the time, he held off.

What kind of infections are you getting? My father has done well for many years, and has infrequent respiratory infections (about one per year) without hospitalizations. However, this year has been bad and he has had 7 urinary tract infections in one year. However, he also has a spinal cord injury with neurogenic bladder, which increases his risk of these infections. It is unclear how much his immunodeficiency is contributing to these infections.

What is your situation? Is it just CD4 cells that are low? How low? Are you taking prophylactic antibiotics? What type of infections have you had?

I hope you have found some of the support you are looking for.

[jeffgator]

Hi Euvah,

My name is Jeff and I also have ICL.  I am in the study at the NIH.  You are the first person I have seen online that has ICL (let alone met in person).  The little information about it, and the uncertainty of the prognosis is quite scary, but I am so happy to finally know someone else with this illness.  I sent you a message on Facebook and look forward to talking more.

All the best,

Jeff