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I Do Not Believe I Have HIV (IDIOPATHIC CD4 LYMPHOCYTOPENIA, 2011) (ICL, 2011)
Mar 21, 2011

I went to a holistic doctor to start my diet. I am over weight. He ran a seires of test. I was diagnosed with HIV. My immune system was 117 and my viral load was 250. The following week more test because I said there must be an error. My immune was 117 and viral load 90 with no medication. I went to another doctor. Three weeks later I was tested my immune was 111 and there was no trace of HIV. I had started the medication. Seven days before I took the first test I had a flu shot and pneumonia shot. I have never had a blood transfusion. My husband was tested and he does not have HIV. I have never used drugs.I am low risk if any risk at all. They have registered me with "full blown aids". I still believe that I do not have HIV or aids.I have no symptoms. I look fine. I feel great and I have gained more weight. What would you do or where would you go or what test would you ask be given to find out if perhaps there is something else wrong?

Response from Dr. Frascino

Hi,

Your first mistake was going to a "holistic doctor." Most have never gone to medical school and actually know next to nothing about human ailments or effective therapies. For instance, you went to him to start a diet for being overweight and he runs an HIV test on you? What's that all about? He then misinterprets the tests, which were ordered inappropriately, and leads you on a wild goose chase of additional expensive tests and an unwarranted treatment for an illness you most likely don't have!

I would suggest you consult a certified HIV physician specialist or at least an HIV-knowledgeable physician (M.D.!) to sort out what's going on. I would tend to agree with you that you are most likely not HIV infected. You also report follow-up HIV tests found "no trace of HIV." I can't determine if this was an HIV-antibody (diagnostic) test or an HIV plasma viral load (monitoring) test. I'm also unsure what you mean by your "immune system was 111." Was this a CD4 count? It is possible to have a low CD4 count and not be HIV infected. See below.

If you need a certified HIV specialist in your area, check the Web site of the American Academy of HIV Medicine (www.aahivm.org). They have a "find a physician" function.

Good luck. Write back after you've had your second opinion.

Dr. Bob

history of cd4 and cd8 lymphopenia but hiv 1 and hiv 2 and western blot has been ruled out Dec 12, 2009

my cd4 count is at 478/ul lymph is at 36.8% my cd8 count is at 113/ul lymph 8.7% but have never tested pos for hiv 1 or hiv 2 or western blot . in 2005 i had a pneumocystis carinii pneumonia i was also tested and tested neg for hiv . i was ok after that then i started to feel sick in july 2008 fevers from 100 to 104 i let it go then started to loose weight fast cold sweets at night bad i let go tell i got really sick till i went to the hospital i was having problems breathing the fevers got worse i also had bilateral pneumonia . 1 was in the hospital 47 day i been in and out of hospital seen then 6 times the doctor that i see is an hiv doctor i been tested about 32 times from diff dotors when i was in the hospital they all ruled out hiv my doctor says he has never seen this that there are 7 none cause of what i have i was reported to the cdc because they said it was a cause that they have never seen low cd4 and low cd8 is there any thing i can do or who can i talk to or who is treading this please if you can help

Response from Dr. Frascino

Hello,

You should be evaluated and treated by a clinical immunologist. There are other immunological conditions that can cause lymphopenia other than HIV-1 or HIV-2. It appears that HIV has more than been ruled out by your 32 negative tests!

I'll reprint some information from the archives on idiopathic CD4 lymphocytopenia. This condition affects primarily CD4 cells; however, it may provide insight into your problem as well. In light of the degree of your immunodeficiency, you should be treated with opportunistic infection prophylaxis.

Good luck.

Dr. Bob

Please help!!! DONATION Feb 8, 2009

Dear Doctor,

I am a 37-year-old man, and 6,5 months ago I had a risky exposure (unprotected sexual contact) with a woman with unknown HIV status. 6,5 weeks after this exposure, I had several symptoms such as fever for a week, sore throat, one swollen lymph node under neck and severe muscle pain. At the time of my illness and also 3 months and 6 months after the contact I was tested negative for HIV with Ag+Ab testing. But when my symptoms began I suffered from tongue problems (black hairy tongue which lasted for 1 week) and since that time I am suffering other tongue problems which are : light-brown coating on my tongue and white points/patches along the side of my tongue. In addition, I have a never-healing athlete's foot for 3 months and swallowing problems and chest pain. This week I have again been extensively investigated in the hospital with biopsies and endoscopies and diagnosed with leukoplakia on my tongue and what much worse is PCP (Pneumocystis pneumonia) which causes my swallowing problems and chest pain. My doctors said that the leukoplakia I have on my tongue is resembling oral hairly leukoplakia and PCP almost always occur with HIV positive persons. They have said that both of these symptoms/illnesses are ARC although I still had a negative HIV test which they had no explanation for. So, in short, they have diagnosed me with AIDS. But, I don't understand why I still test negative with HIV tests. So far I had several HIV Ag+Ab (Ab for HIV1&2, Ag for HIV-1) test and one PCR test for HIV1 which came back negative. Almost all guidelines say that the maximum window period is 3 months and may be extended to 6 months if you have a kind of autoimmune disease which I am sure I didn't have. At the moment I have no idea what I should do and how I should move. Can you please help me and suggest anything you may think about?

Thank you very much in advance.You are amazing person!

Response from Dr. Frascino

Hello,

You do not have AIDS. Your repeatedly negative HIV-1 and HIV-2 antibody plus antigen tests plus your undetectable PCR out to six months from your potential exposure are definitive and conclusive. You are not HIV positive and therefore by definition cannot have AIDS.

Your diagnoses, including PCP (pneumocystis carinii pneumonia) and oral hairy leukoplakia, etc. are suggestive of immune deficiency. However, there are a number of medical conditions that can cause immune deficiency (or immune suppression) other than HIV. I would suggest you see a clinical immunologist for a complete evaluation. I would also suggest you have your T-cell subsets checked. I'll reprint below some information from the archives on one type of non-HIV-related immune deficiency disease: idiopathic CD4 lymphocytopenia (ICL).

Good luck!

Dr. Bob

ICL Jul 1, 2007

I have a question about the definition of Idiopathic CD4 Lymphocytopenia (ICL). First off I know about the qualification of less than 300 cd4 count ( or less than 20%) on two or more occasions and being HIV negative.

One thing I want to know is does the person also have to have an AIDS defining disease or can they be clinicly asymptomatic?

Also is the less than 300 T cell count (or under 20%) mandatory? In other words if a person had an AIDS defining disease(lets say chronic TB), was HIV negative, but had a T-cell count of 650 would he qualify as ICL or would he be just a TB patient?

Thanks for your help, Daniel

Response from Dr. Frascino

Hi Daniel,

The case-definition criteria for ICL include:

1. CD4 count less than 300 or CD4% less than 20% on two or more measurements.

2. Lack of evidence of HIV infection.

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

Please note, transient unexplained decreases in CD4 cells may occur in healthy persons.

To answer your specific questions:

1. No, a person does not need an AIDS-defining disease to have ICL. They need only to meet the three criteria listed above.

2. Is a count of less than 300 or less than 20% mandatory? Yes, it's the first criterion listed above.

3. A person with TB and CD4 count of 650 would have TB, not ICL, because she didn't meet this first criterion above. (I should also point out that TB is only considered to be an AIDS-defining illness in folks who definitively have HIV infection.)

Dr. Bob

i ahve got Idiopathic cd4 lymphocytopenia (IDIOPATHIC CD4 LYMPHOCYTOPENIA) (ICL) Jan 20, 2008

Hello Doctor,

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.

Please help....

Response from Dr. Frascino

Hello,

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!

Dr. Bob

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

Hello,

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.

Good luck.

Dr. Bob

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

Hello,

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.

Good luck.

Dr. Bob

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

Hello,

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?

Dr. Bob

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?

Thank you

Response from Dr. Frascino

Hi,

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.

Dr. Bob

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

Hello,

"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.

Dr. Bob

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

Hello,

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?

Dr. Bob


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