update from joe (lymphopenia etc)
Jun 27, 2003
Dear Dr. Frascino,
I hope you are doing fine!
I wrote to you in January (http://www.thebody.com/Forums/AIDS/Fatigue/Archive/Other/Q143845.html) about my lymphopenia, lymphadenopathy, mild numbness in hands and fatigue. At that point i had tested negative for HIV and other conditions up to 34 weeks after possible exposure.
You advised me to see a hematologist and immunologist for a full check up including CT scan, lymph node / bone marrow biopsies.
Last April i finally managed to see a specialist for hematology and immunology. This is what happened in the meantime:
* my lymphopenia is gone. the only leukocytes slightly out of range are monocytes (does this give any clue?)
* the doctors use the term "micro lymphadenopathy" to describe my swolen lymph nodes. They could not "make the case" for "real" generalised lymphadenopathy...(however 2 nodes are visible and a couple of others are easy to feel at several places over the body)
* my liver enzymes (ALT has been between 90 and 180 for months) are now in range (around 22-25) since several months
* i tested negative for hiv 1/2 at >12 months (i requested the test myself) and i managed to get another PERT test done on my plasma (negative) which seems to confirm earlier pcr, p24, pert and viral culture tests.
* i still feel very fatigued. the feeling comes in waves (3 days mild fatigue followed by 3 days bad fatigue)
* i am glad that my ALT and WBC are okay now. However since my labs are "okay" and since i am able to work (desk job), the doctors continue with their wait-and-see approach. Their working theses is that i may have something like a "prolonged viral syndome" or a "fatigue syndrome". My doctors definitely say that i am no mental case. They even say that i am handling this problem in a good way, etc.
However, I am pretty exhausted and I don't have any idea how to proceed.
- Should I insist on the CT scan and lymph node biopsy? Can you give me some arguments my doctors cannot dismiss?
- Is it safe to remove 2 or 3 of the most hurting nodes or is it impossible to get some relief that way?
- anything else should i do?
thank you Dr. Bob, you are an incredible man!
Response from Dr. Frascino
Thanks for the update. The good news is your lymphopenia resolved. (Slightly out of range monocytes are of no great concern.) Not having "real" generalized lymphadenopathy is also good news. Being able to feel lymph nodes at various locations in the body is not uncommon or worrisome (without other related abnormalities). Your elevated liver enzymes are not back to normal. More good news! Youve had a number of HIV tests, including viral cultures out to 12 months, all of which were negative. Again, excellent excellent news!
So what are you left with? Fatigue that tends to wax and wane, and a few slightly enlarged lymph nodes. First off, we can absolutely conclude HIV is not your problem. Second, its quite clear that whatever was causing the problem is definitely getting better based on all the information you provided.
Joe, I think that if you are being monitored by an immunologist and hematologist, that a "wait-and-see approach" is perfectly reasonable here, especially because so many of the abnormalities you had before have spontaneously resolved. I also agree a viral (not HIV) illness is the most likely cause. Just as your lymphocytes and liver enzymes have returned to normal on their own, so Id anticipate your other symptoms will resolve spontaneously as well. A CT scan and lymph node/bone marrow biopsies? No, I wouldnt recommend them at this time.
Best approach for now is to eat well, rest, exercise, keep stress levels low, and allow "tincture of time" to resolve your remaining complaints. You can exercise in moderation until you get your energy levels back --- daily walks, dancing, cleaning house to the Justin Timberlake CD etc. Id say you are not only definitely out of the woods now, but also very much "on the mend!"
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