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Some questions about ICL.

May 8, 2006

Hi Dr Frascino, I've been having some increasing problems recently where the doctors really seem to be confused about which has led to me feeling like I want to do some research of my own. I have a long and complicated medical history which i will try and summarise for you. I'm basically wondering if I have found out about ICL before my doctors even have thought of it!!

I'm a 22 year old white british female. I had severe glandular fever (mono) caused by EBV with associated hepatoslenomegaly at 7 years of age which was serologically proven. At age 12 i developed an 'encephalitic' like syndrome which none of the doctors could pin point an actual cause and was attributed to 'ME or chronic fatigue syndrome'. I required a year in hospital and rehabilitation. I've had 2 episodes of chickenpox, at age 2 and 15. I was hospitalised on a school trip after having a severe ear/sinus infection and having a seizure, given IV antibiotics. At age 19 (in 2003) i was infected again with EBV (positive for reactive/atypical lymphocytes) and had massive hepatitis and obstructive tonsilitis requiring hospitalisation for IV antibiotics and steroids. I had a persistantly high EBV count during the course of 9 months which confused the doctor and then sent my blood off to a specialist who said i had made a very low level of interferon in response to the virus. He put me on valaciclovir which brought my viral load down. Two weeks later I had a chest infection and put on antbiotics but then developed night sweats, very high fever, cough, rapid weight loss and was hospitalised and found to have reoccurance of splenomegaly. Bone marrow was negative for lymphoma and leukaemia. Viral serologies were negative but the cough continued for half of 2004. I had a fungal mouth infection and then developed streptoccocal cellulitis requiring hospitalisation with IV antibiotics. My GP then referred me to a haematologist with a suspicion of pernicious anemia due to macrocytosis and low B12 and was diagnosed with this after a positive shilling test. Despite B12 injections and folate tablets I have become anemic and have been very lymphopenic, with neutropenia at times also. The haematologist referred me to see an Immunologist as he thought i might have a primary immunodeficiency but the Immunologist said he couldnt find an immune defect with the simple tests so wouldnt do the more specialist tests, despite having lymphopenia of 0.69 and a CD4 count of 254. A repeated CD4 count 6 weeks later (2 weeks ago) was also 254.

Inbetween these distinct infections I have had frequent skin, eye and throat infections.

My body is having another crash at the moment however as 4 weeks ago i stopped being able to hear in my left ear, weight starting falling off again and i was put on metronidazole for a 'tooth' infection. I developed a rapidly progressive non-blanching petechial and maculopapular rash on my legs, bottom and chest with a mild pancytopenia and fever. Skin biopsy wasnt 'conclusive' and I had a bone marrow biopsy last thursday which so far has come back negative for lymphoma/leukaemia. I was put on 2700mg a day or antibiotics for the worsening infection by my GP. The haematologists found 'reactive lymphocytes' on my blood film and suggested that it might be an EBV reactivation or another virus, even though the immunologist just told me last week that i have such a low EBV count it shouldnt even cause any symptoms. They did a throat swab last week too and this came back positive for Group G strep, but said it was of no significance but after looking up this infection it says clearly that this is a bug normally grown in immunocompromised individuals. Also 3 different doctors commented on the little white spot things i have around my eyes and said they thought they were molluscum. After reading a bit about ICL, molluscum is mentioned as a common infection with it.

I had an HIV test last week and it was negative. I've only had one sexual partner who had no risk factors and I have no risk factors either.

To be honest, im fed up with things so obviously not being right with my body and just because the docs cant find something obvious and simple they stop and think it is 'nothing' but it is apparent it isnt nothing. I will be seeing the dermatologists and haematologists soon to follow everything up but after doing a little research into low CD4 counts i found out about the entity known as ICL Idiopathic CD4+ Lymphocytopenia and i think i actually already fit into that category as I have had 2 counts of my CD4 level being below 300.

I mentioned it to my GP yesterday and he said he hadnt heard of it but I did seem to fit but he didnt think it would account for all of my problems, maybe it doesnt but it would account for the repeated infections and basically seeming like I clinically have HIV/AIDS. It was a relief when he said it was unacceptable for me to go on like this, i just hope someone can help my body.

I read a recent reply to a question you gave on the 16th March about a woman with ICL so thought it would be best to ask you about your thoughts on this. How rare is ICL? If it is very rare could that account for why these doctors havent thought about it?

Thanks very much, Katharine. London.

Response from Dr. Frascino


The case-definition criteria for Idiopathic CD4 Lymphocytopenia (ICL) include:

1. CD4 count less than 300 cells/mm3 (or CD4% less than 20%) on two or more measurements.

2. Lack of laboratory evidence of HIV infection.

3. Absence of alternative explanations for CD4 lymphocytopenia, including Sjgren's syndrome, sarcoidosis, radiation, atopic dermatitis, collagen-vascular disease, steroid therapy or lymphoma.

The Centers for Disease Control receives notice of about one ICL case per month.

I believe additional immunologic studies may be warranted and I'm disappointed the immunologist you saw did not complete the evaluation. He or she would also be the specialist best trained to diagnose and manage ICL. Perhaps your GP could refer you to another more competent clinical immunologist for a definite diagnosis and ongoing treatment.

Good luck!

Dr. Bob

Unlikely transmission, but still worried.
From "Scared Dad" - oral white streaks - Thank you!!

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