|i ahve got Idiopathic cd4 lymphocytopenia (IDIOPATHIC CD4 LYMPHOCYTOPENIA) (ICL)
Jan 20, 2008
after few weeks of having tested negative from HIV , all my happiness has gone. I have got idiopathic cd4 lymphocytopenia. Now i really wish to have been HIV+. My only thoughts now are about my future time waiting for my death. Hope you can answer me , only two questions. -I know that there are not drugs for this sickness, how long will it take to die? -And how painful it will be?
Im so scared that i'm only thinking about suicide now.
| Response from Dr. Frascino
If you have ICL (idiopathic CD4 lymphocytopenia), you should be followed by a clinical immunologist who is both knowledgeable and experienced in treating this relatively rare condition. The first thing he or she would do is confirm the diagnosis by ruling out other illnesses associated with low CD4 counts, such as Sjgren's syndrome, sarcoidosis, etc.
Next, why are your "only thoughts now about waiting for death"??? If indeed you do have ICL, your prognosis is quite good! (Much better than mine with HIV, for instance.) "How painful will it be"??? ". . . i'm only thinking about suicide now." Hmm . . . aren't you being just the tiniest bit overdramatic dearie??? OK, you're scared. I get that, but becoming hysterical and suicidal over an illness with a good prognosis seems as bit whacked to me. Gosh, if I reacted that way when I received my HIV diagnosis (a much, much, much worse prognosis than ICL), I wouldn't be here today (a full 17 years after my diagnosis) answering questions like yours.
I'll reprint some information from the archives about ICL. Please note we are using IL-2 (interleukin-2) and gamma interferon as well as other agents to treat ICL!
Confused in testing (IDIOPATHIC CD4 LYMPHOCYTOPENIA) (ICL) Jun 15, 2007
Hi Doctor Bob,
Yes it is me again, but I am even more confused by my test results.
I have tested HIV- on the standard testing in week 10 since my last exposure. The specialst took another test for my PCR which was undetectable at 50 approx 3 months after my exposure. (Remember my EBV test came back negative a month ago)?? She has taken another blood count and everything is fine except my CD4(208) and my CD8(133). Can you help me understand what in the world is going on?? We are awaiting the test results from the P42, but what should I expect as an outcome? Is the EBV causing this drastic decline in My CD counts? Is stress an important role in those counts.
Much appreciation for your reponse. I am wondering how in the world you find the time to be so generous:)
Response from Dr. Frascino
If your CD4 and CD8 counts are persistently low and your HIV-1 and HIV-2 tests, consistently negative, I would suggest you consult a clinical immunologist. There are a variety of illnesses that can result in abnormal T-cell subsets, including ICL (idiopathic CD4 lymphocytopenia). (See below.) I do not believe this is the result merely of stress or EBV. Ask your doctor for a referral to a clinical immunologist or consult one at your nearest major medical center.
I wish I could provide a more detailed response; however, this is not the type of problem that can be handled effectively over the Internet with limited information and without the benefit of a physician examination and complete medical records.
Non hiv aids (IDIOPATHIC CD4 LYMPHOCYTOPENIA) (ICL) May 9, 2007
Dr. Bob, I read that about 1% of all aids cases do not involve an hiv virus that can be found. Could that be the cause of a number of us who from every indication other than a test believe we might be hiv positive. I have tested negative past two years from a high risk exposure. However, besides the acute symptoms which included fever, rash, swollen lymph nodes at 6weeks post exposure I also have the white and sometimes discomfoprting tongue[ been there since right after acute symptoms and still there], I developed floaters and now what appears to be ks lesions on lower leg.[ these two lesions do not go away. They are round and pink], this accompanied by swelling on dauily basis. It is all so very strange but I want your opinion. I can tell from this website I would not be the only one interested in your answer. Also, if this is a possibility where could I get more info in regards to non hiv aids?
Response from Dr. Frascino
Non-HIV AIDS is a misnomer. AIDS is caused by HIV (Human Immunodeficiency Virus). Period! That said, there are other conditions that can cause immunodeficiency. Cancer chemotherapy and use of certain immunosuppressive drugs for instance can cause immune deficiency, which in turn can result in opportunistic infections identical to those seen in AIDS. The condition I believe you are referring to is idiopathic CD4 lymphocytopenia (ICL). I'll reprint some posts from the archives that address this condition. Please note your "1% of all AIDS cases do not involve an HIV virus" is way, way, way too high, if you are referring to ICL!
Regarding your situation, you have tested negative past two years. That means HIV is not your problem. No way! No how! As for your "symptoms," I do not know what a "discomfoprting" tongue is. I can also advise you emphatically, that you do not have Kaposi sarcoma!! If you have unexplained symptoms, have your doctor check them out. If no physical cause can be identified, which I strongly suspect will be the case, I suggest you consider a psychosomatic cause. Counseling may well help.
Dr Bob is it hot in here. Or is it you? Love you (ICL) Oct 16, 2006
Dr Bob unfortunately I found myself in the same condition. Here is my story back in 1997 I had a sexual partner which after two years into the relationship and a long history of unprotected sex found out she was HIV positive, however after rigorously testing I remained negative, time flew fast and in 2002 I began to have serious health problems such as trush which was diagnosed and treated, generalized swollen lymph nodes (pretty much in my neck and underarms) constant fatigue and rash once in a while, then my Doctor ordered more HIV testing (Sep 2002) DNA PCR, Elisa and CD4 count and surprisely everything was negative, except for the CD4 count and % (225 and 14%) He told me not to be alamed by this that he would repeat the CD4 count to make sure. One month later the results were almost the same CD4 239 13% then I was diagnosed witn ICL and reported to the CDC (currently I visit my doctor every 3 or 4 months to follow up ang get tested and recieve medicine for preventing OI's) After this I contacted mi ex and told her about it, she invited me over and told me that she was already diagnosed with AIDS and that recently had survived an attack of PCP and soon will iniciate chemo to treat KS. Today i'm at lost and do not where to turn for help please give me some light on this dark tunel I'm going through. I'm a good person and if I have some undetectable HIV I want to have the opportunity to be treated please tell what shoul I do. below i post this article that applies to my situation and I believe to many readers of this forum. Condition Reported in HIV Negative Patient
1996 MAY 13 -- In a letter that appeared in the May 2, 1996, issue of the New England Journal of Medicine (NEJM 1996;334:1202-1203), a Spanish team of physicians described a case of idiopathic CD4+ T-lymphocytopenia in a woman who tested negative for HIV. "CD4+ T-lymphocytopenia is extremely rare in the absence of ... HIV infection in asymptomatic persons," wrote Dr. Eduardo Fernandez-Cruz of Madrid, Spain. Although the woman had no evidence of HIV infection, she did have a history of unprotected sex with an HIV positive partner who developed AIDS.
Fernandez-Cruz has followed the 30-year-old patient for more than five years, and, despite repeated testing, he has detected no evidence of HIV infection. Serologic tests for antibodies to HIV types 1 and 2, recombinant HIV-1 Anticore EIA, Western blot assays and peripheral-blood mononuclear cell cultures remain negative, as do serial PCR assays for HIV proviral DNA.
Test results for antibodies to a variety of other infectious agents, including human T-cell lymphotropic virus type I and II, cytomegalovirus, hepatitis B and C, and Mycobacterium tuberculosis, are also negative. Overall, this patient has met the U.S. Centers for Disease Control and Prevention (CDC) criteria for a diagnosis of idiopathic CD4+ T-lymphocytopenia, he said.
"The fact that our patient has had repeated sexual contact with an HIV infected man before the development of idiopathic CD+ T-lymphocytopenia raises the possibility of the involvement of HIV in her asymptomatic immunodeficiency." Take care Bob because we need you..
Response from Dr. Frascino
ICL is a rare and incompletely understood immunological condition. I'll post some information from the archives below.
Your situation, ICL after having contact with someone who has AIDS, is even more remote. I would assume you are being followed by a clinical immunologist or HIV/AIDS specialist (if not, you should be) and that your ex also has an AIDS specialist physician managing her case. I would advise your two specialist physicians contact each other to discuss your situation. Since your case has already been reported to the CDC, you might contact them and let them do the follow up. At any rate, viral-type-and-strain testing could be conducted on the extremely remote chance something was missed in your initial workup. If not, it is indeed possible this is just a rare case of two completely separate conditions that just happen to be occurring at the same time. The chances of this happening are, of course, extremely rare. But extremely rare things do occur "extremely rarely," right?!? I understand your concern, and with appropriate follow-up testing, we should be able to clear up any residual doubts. Good luck. Keep me posted, OK?
Prevalence of ICL
Mar 13, 2006
In a 1996 response Mr. Sowdasky explained Idiopathic CD4+ Lymphocytopenia (ICL) sometimes called non HIV AIDS. Several times, Mr. Sowdasky called the condition rare. Have there been any studies on the prevalence of ICL? If so, what have they found?
Response from Dr. Frascino
ICL is not a specific disease caused by a single agent, but rather a syndrome characterized by an abnormal laboratory test (low CD4) not linked to other medical conditions. Generally the CDC receives notice of about one ICL case per month. I'll reprint a recent post from the archives that discusses ICL.
HIV-NEGATIVE AIDS Feb 23, 2006
Assuming HIV is the cause of AIDS (and assuming the CDC didn't botch the HIV=AIDS definition), then what is the cause of HIV-Negative AIDS (idiopathic CD4 lymphocytopenia)?
Response from Dr. Frascino
"Idiopathic" by definition means the disease has no known cause. If it did, it would no longer be idiopathic! What we do know about idiopathic CD4 lymphocytopenia (ICL) is that it's not caused by an infectious or transmissible agent. I'll reprint a question from the archives that discusses ICL.
THIS IS NOT IN THE ARCHIVES!! Nov 17, 2005
Youve ignored this before and im asking again because i know its not in the archives. Simple question! Can someone have symptoms of HIV infection and then develop ICL? or is ICL independent of HIV like symptoms?
Response from Dr. Frascino
O.K., here's the scoop on what we know about Idiopathic CD4 Lymphocytopenia (ICL). By definition, it's a syndrome characterized by low CD4 counts (less than 300) that are not caused by HIV or other medical conditions (Sjogrens Syndrome, Sarcoid, Radiation therapy, atopic dermatitis, steroid therapy or lymphoma). Transient unexplained decreases in CD4s can occur in healthy folks. Several important observations have been made about ICL:
1. There is no evidence it is caused by an infectious agent, as there is no clustering or evidence of spread from contact evaluations.
2. The most common opportunistic infections associated with ICL are cryptococcosis, molluscum and histoplasmosis. In general, folks with ICL have fewer OIs than HIV/AIDS patients for any given CD4 level. Infections, such as PCP, Candida and KS (HHV-8), are unusual for ICL.
3. ICL patients generally have a relatively good prognosis and their CD4 counts remain stable.
Presently ICL is being treated with IL-2 and gamma interferon, but since cases are relatively rare, treatment experience is limited. Cases of ICL should be reported to local and/or state health departments for follow-up.
That may be more information than you or our readers wanted to know, but at least you won't accuse me of ignoring you any longer, right?
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