|Long term nonprogressor, but very ill
Apr 28, 2004
I am what they call a long term nonprogressor - at least, since diagnosis, I have had an undetectable VL for a few years without therapy and normal CD4's(>900 as of last T cells subset).
But, I have been incredibly ill from the start of infection...for almost three years, I have had really bad symptoms almost every single day. Yet I read of people who say they feel well with single digit CD4's and high VL's.
How can this be?If I have low enough levels of HIV in my plasma by bDNA and RT-PCR 1.5 assays (undetectable), shouldn't I feel better? if I have a strain of HIV that is especially bad, wouldn't it be attacking my CD4 cells ruthlessly?
Can HIV be totally ruled out as a cause of symptoms in a case such as mine or can it do a lot of damage in thelymph nodes and elsewhere without ever showing up in VL tests? Symptoms include frequent difficulty breathing (can HIV cause asthma and how does one test for it?), weakness and nonresponsiveness in legs, chronic pharyngitis (throat feels blocked), painful lymph nodes (but never swollen since primary infection), burning and very clammy skin, diarrhea, amazing nausea often...
Test for other suspects have been negative...Hep B and C, colon cancer,etc. Tests such as for C Reactive Protein, chromogranin, CPK enzyme, MRI and Pet Scan have been negative, so I don't know where to turn. I literally feel as if I am dying a very slow and truly agonizing death - the symptoms are that bad...and I fight back every day, show up for work and suck it in as wellas I can. But, I have no quality of life like this and the symptoms get worse (though there are occasional spurts for a few days where I feel a little better - though not well - as if my immune system is rallying...then the nightmare comes crashing back).
With an undetectable VL and normal number of CD4's, can HIV be ruled out as a cause of these symptoms?If not, how can one track into HIV as a cause? Is it viable to extract cells from lymph nodes to analyze them? Any significance to a positive blood smear with reactive lymphocytes? A skin biopsy showed lesions like those of cutaneous lupus, but tests for systematic lupus were negative.
So, I don'tknow where to turn- I cannot convey how bad these symptoms are and I would do anything to feel well again. So, your advice - can HIV be ruled out if I have an undetectable VL, how can I feel this ill with an undetectable VL...what tests would you do if I were your patient...are there tests you would do to rule out lymphoma or leukemia and what would they be (I thought the chromogranin test and CBC covered that?)? Some docs even advised me to begin HAART to see if it is helpful.Any advice and perspective you can give would be very appreciated.
Response from Dr. Lee
HIV can be associated with immune dysfunction other than simply a loss of CD4's. But, HIV is not the only thing that can cause symptoms such as you describe. It is not possible for me to list all the syndromes and diseases that need to be checked. Work with your docs. I'm not sure that HAART will help, but the only way to know for sure about that is to test the hypothesis by experimenting. Otherwise, there should be some symptoms that can be treated. (For example there are several medicines to treat nausea.)
Please Respond!!! (not sure if infected- a worried adolescent)
hiv pregnant on combination therapy
This forum is designed for educational purposes only, and experts are not rendering medical, mental health, legal or other professional advice or services. If you have or suspect you may have a medical, mental health, legal or other problem that requires advice, consult your own caregiver, attorney or other qualified professional.
Experts appearing on this page are independent and are solely responsible for editing and fact-checking their material. Neither TheBody.com nor any advertiser is the publisher or speaker of posted visitors' questions or the experts' material.