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CD4 depletion
#39023 - 08/29/02 01:52 PM
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Dear all - I really need some advice - I'm freaking out about HIV. I've been suffering from symptons now for 8 months after a seemingly low risk exposure - continue to have swollen glands, white tongue, floaters and mild sore throat. Have tested -ve on Elisa out to 8 months as well as undetectable on viral load 4 times.
However have had CD4 count done and it is 350!!! Basically my white blood count is really low. What on earth could be causing this bit HIV?? Have tested -ve on EBV, CMV, Hep A and B etc.
I would really appreciate any comments / help - I really don't know what to do next. I'm really scared that my CD4 count is going to decline to 200 and I'll get opportunistic infections but still eb -ve on all the tests.
Very Scared
Mark
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Mark Im in the same boat
Howare your WBC and Lymphs Monocytes
My Lymps are very low on 3 tests Don't know if that means anything though
What about the tounge My tounge is all white like a frosting is on it. When I scrape it a mucus comes off and then its not so white, but themucus is like tan not white I also have extremly dry mouth, which I never had before. What exactly was your exposure.
Unlucky
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One CD4 test doesn't mean a thing. CD4 counts can vary quite a bit. Even between morning and afternoon. It is the trend that is looked at. This is not something that can be established with one or two CD4 tests. Many things including stress can affect a CD4 count.
You are doing all this to yourself.
....continue to have swollen glands, white tongue, floaters and mild sore throat. Have tested -ve on Elisa out to 8 months as well as undetectable on viral load 4 times.
First off, ANYTHING can cause swollen glands. Perhaps it's your mild sore throat. Please tell me what a white tongue (which many people have) and floaters have to do with HIV infection. Last time I checked Dr. G over at Hopkins was banging his head against the wall because he was soooo tired of telling people over and over that floaters HAVE NOTHING TO DO WITH HIV.
You don't have HIV. All your tests show that. At this point you have really OVER tested. All that is doing is creating more anxiety in your life and not allowing you to move on with your life. Something else is causing your symptoms, and the truth is, nothing you descibe is really worth getting all worked up over in the first place. I doubt if you would give any of it a second thought if you hadn't allowed yourself to fall into this obessive trap. You need to move on. If you can't do it alone, then find a professional to help you.
Jackie
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My WBC is 2500 (normal range 4500-10500). My tongue is very dry with like a white film on it that is kinda furry.
My exposure was heterosexual sex - don't know status of other person.
I've looked everywhere for possibe alternative causes for the low WBC but the 2 things which keep coming back are AIDS and Cancer and I'm sure as hell that it isn't cancer.
The symptons started 2 weeks post exposure and continue to this day showing few signs of lessening. I have to be honest - I'm sure the tests are 99% accurate but I'm not convinced they piack up all infections!!
Still scared
Mark
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Only Cancer and AIDS (hate that term, try Advance HIV Disease) cause a low WBC? Try again. I'm not here to do your research, but just off the top of my head you can add Pancreatitis,Diet and Lupus (tho' that may be a form of cancer, there are SO many) to those. Are you sure it's not cancer. How can you be so positive it's not cancer, but so sure it's HIV? Did you have tests run to confirm it isn't cancer? What did your doctor say? Or are you busy playing doctor and diagonsising yourself? Or did your doctor tell you not to worry about it, and you've decided to worry about it anyway?
I kinda imagine he did. I notice you were quick to respond to another worried well but you didn't respond to my post. Doesn't surprise me. I'm sure it's much easier for you to ignore things like floaters have nothing to do with HIV because it doesn't support your belief. So tell me...how many times have you been told by medical personnel that you can quit testing? How many times have you decided you know more than they do?
What you have described about your tounge sounds suspiciouslly similar to what other people have describe. Same symptom. Of course it's not a symptom of HIV, but a lot of people that have tested negative and don't believe their tests seem to have it. Of course a LOT of people that don't even worry about HIV have that. It's called Coated Tounge. Very Common. Certainly not a concrete reason to have given up 5 months (almost HALF A YEAR) of peace in your life.
Do you REALLY believe that you could be having ARS symptoms for 7.5 MONTHS!!!!! Impossible. Please don't say it isn't ARS, but sypmtoms from the progression of HIV. After ARS people are SYMPTOMLESS for years. A 3 month test is CONCLUSIVE. It's 99.9. If you want to throw away your life being worried about 1/10 of 1 percent, that is your choice, but from where I stand I just it's a waste of time. Life's short. Too bad you are wasting yours being concerned over an issue that was decided for you 5 months (ALMOST A HALF A YEAR) ago.
I admit I'm being long winded this evening. I just get really frustrated by these types of posts. For heavens sakes people YOU ARE NEGATIVE. You all come across as COMPLAINING about the fact you are NEGATIVE. I just don't get it. Each and every time you receive that negative result you have received amazing gifts. Health and a second chance. Yet instead of being happy and grateful, you find ways to disbelieve it. Why? How can any of you throw away peace of mind so carelessly?
One thing being HIV has taught me....DON'T WASTE TIME. It's precious. You can't get it back. The only thing being obessive about something does is rob you of the happiness, contentment, joy of life. Life and time is precious...don't waste it.
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Hang in there mine were low too then I at least felt a little better when I had been tested multiple times and at least they were staying at the same level.
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Jackie,
I can undestand your frustration, but it is a very stress full time for these folks. Jackie you have been a great asset to this board and we appreiciate it.. 8-)
To the individual post, the floaties are nothing to worry about. 3 potential exposures and negative, so far, floaties are do to the stress.. a lot of people get them.. so relax you are ok.
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Actually floaters are due to protein deposits. Those are the spots. No one knows why exactly. You're correct in the fact lots of people get them. Most of the people that have floaters don't have HIV.
I understand it's a stressful time for people. For the most part I'm very patient with people that are in the 3 month window and fairly patient with people that opt to test at 6 months, even tho' I do believe the guidelines and would trust the 3 month test. It's people that have tested over and over and STILL don't believe their results that really get to me.
Remember I've been where you are. Before I tested positive. I tested negative twice. I didn't keep on testing because I didn't believe the results. I tested because it is recommended that someone in a relationship with a person with HIV should test regularly. I use to test every 6 months. The difference was I BELIEVED my results. Funny thing, the more I've learned about the disease and transmission over time, the more I see I was so CORRECT in not obessing about it.
I felt the stress of waiting for the results. I felt the butterflies in my stomach right before I would get my result. The difference is, after I received a negative result I wouldn't worry about it again until it was time to test again.
For those of you that will wonder...or say, but Jackie, maybe the result was wrong and you really were positive before that last test and those other were wrong...all I can say is POPPYCOCK! As I've said before...between when I had the 'flu' and the fact my viral load was still high and had not gone down to the set point the first time I had it done proves that I tested early in my infection (about 8 weeks after I was infected.)
But anyway back to the point. See where I'm coming from? There I was believing my negative results and I had a real reason to worry. That's why I just can't understand why people with possible or non-exsistent exposures keep looking for reasons to disbelieve their tests. Funny thing I've notice....the more valid the reason a person has to worry, the more likely they are to believe the results. Maybe because if a person is involved with someone that is HIV, they have learned about the disease and aren't as likely to make it out to be some magical, mythical monster.
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I saw this when I was putting another post together.
http://www.hopkins-ssjs.org/forum/view_question.html?section_id=61&category_id=102&id=21709
While this was a post from a person with HIV, it goes to show that even a cold can affect a CD4 count. That's why one test doesn't mean anything.
I've had mine go from 525 one time, to 320 the next, back to 550 the next. CD4's are known to jump all over the board.
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Dear Mark,
I am in exactly the same boat. I wish I had never had my CD4 count done! After a low risk exposure I became sick with what I think/thought was ARS. I felt really sick. I have tested negative to CMV, EBV, Hepatitis A,B & C and syphillis. I have tested negative by ELISA for HIV 1&2 antibodies at 9, 12, 16.5 and 22 weeks and negative proviral DNA at 9 weeks. What has continued to freak me out is that I have had CD4 levels done on 3 occasions and they have ranged from 367 to 410. I am not going to have a CD4 count ever again! I have seen a Professor in Sydney Australia and another ID specialist and they do not seem bothered by these counts and they have both told me I do not have hiv. They say plenty of viruses can do it (like what?!). There are also some posts on the "ask the expert" section of this board where the doctor does not seem worried by lowish cd4 counts in the face of a negative ELISA. Bottom line: medicine knows very little about cd4 counts in non-hiv infected people. Moral: never check your cd4 count unless you have already tested hiv positive. It is the low counts that has been one of the major reasons for me becoming a basket case over all of this.
Best wishes
Extremely unlucky, hoping to become Extremely unlikely
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lymphopenia is not diagnostic!
Posted: Oct 19, 1998
Dear Dr
You seem to have the most sympathetic ear for the worried well so I decided to post my information here. Two weeks after a potential exposure my lymphocyte percent began to decline from the 20s to about 13 by the end of week 4. I was feeling unwell and lost about 10 lbs. A CD4 count was 402 although the CD4:CD8 ratio was 2.7. After this I sought better medical care and got to an HIV-knowledgeable doctor who bluntly told me I did not have HIV in spite of those numbers. It took me a long time to become fully convinced but an undetectable VL at 5 weeks and negative antibody tests at 4.5 and 7 months pretty much rule out infection, not to mention that I gained back the lost weight and feel fine, better than ever in fact.
I just wanted to post this as proof that low lymphs and CD4 do not mean HIV. As far as I know, my only illness was extreme fear of HIV, and the anxiety may well have contributed to these numbers. Not all doctors are in the know about the effects of emotional stress on these numbers. The CD4 doctor gave me the bad news but never suggested that the incredible anxiety and depression I was experiencing may have had something to do with the numbers.
To Doctors, please reserve CD4 counts for those who have already tested positive. To the worried well, when Dr Holodniy says that many non-HIV factors can contribute to low lymphs, he is speaking the absolute truth. Thanks, Dr Holodniy, for your sympathetic ear.
Couldn't have said it any better. MH
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Low t -4 without hiv?
Posted: Jun 14, 1999
All my tests for hiv-1 r neg 1 year out.I have painful glands and border low t4 count.Can other viral illnesses (like chronic ebv) be the reason for the low cd4 counts?.Keep up the great work.
Yes and Cytomegalovirus (CMV) and probably other viruses we don't know about yet. MH
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ELISA negative, PCR undetectable, CD4 370?
Posted: Feb 14, 2001
Possible exposure a year and a half ago. I have been experiencing symptoms similar to HIV for little over a year. My Elisa and PCR test were negative at three months and tested negative at one year with the Elisa; however, my CD4 count is currently at 370. Is there a possibility that a PCR cannot pick up the virus at three months? Is it a possibility that it would not pick up the virus at 11 months while taking a high dose of Vitiman C (3000 mg)? Is it possible not to produce antibodies after a year and show up undetectable on a PCR test?
No to all 3. MH
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