does any one know where to send blood - TheBody.com's Bulletin Boards

One for the psychologists among you. This is a long post and not everyone will be interested in this. You'll soon see if you're not, so you don't need to reply saying so!

It's not my intention to freak anyone out, by the way. Quite the opposite. I'm trying to get to the bottom of why someone will repeatedly and FALSELY claim that he is a late, late, late seroconverter, and hopefully help me solve some of my ongoing problems too.

When I first read about the thirty-month seroconversion, I freaked a bit, like many here, especially because what the guy ("julio?") was describing was basically exactly what I was experiencing.

Subsequently, it was shown by a good amateur detective on this site, that he also "seroconverted" at seven, thirteen and nineteen months! In short, he has most likely never seroconverted at all. In fact, he seemed to flip between being a seroconverter and a non-seroconverter, depending on which doctor he was talking to. He was negative in November 1999, seemingly forgetting that he had tested positive only two months earlier!

So what we have here is someone who, admittedly, has shown himself to be untruthful about his HIV status, but who otherwise has been remarkably consistent in his alleged and developing problems for OVER TWO YEARS. In that time, he has posted CD4 counts, CD4/CD8%'s and VL's which have also been consistent. (There are a few very minor deviations, which I don't think are significant, although some might think that someone so seemingly obsessed would not make ANY mistakes).

So, what do you make of him? Is he for real, total fake or somewhere in between?

Personally, I would rule out "total fake", unless its some weird injoke between a couple of doctors or something (and how likely is that?). I just can't see anyone having the motivation and inclination to completely make up this story, post it over two years and even speak to Dr Gallant about it a few times.

Do we rule out "for real"? We might do so on the grounds of his fluctuating HIV+/HIV-status. I can't explain his motivation there, unless he's trying to "bluff" the docs into some sort of desired response?

Other than that though, and this is only my opinion

1. he DOES exist
2. he IS mostly for real
3. the physical complaints he describes ARE largely genuine, perhaps exaggerated/intensified by being, in his words, "a nervous wreck"
4. not sure about the hospitalisations and "OI but not OI" type diagnoses: maybe real, maybe made-up to further validate his case
5. there is NO current explanation for his problems, other than the fact that he is a total loony who's imagining it all

Having had many of the same chronic problems (fatigue, diarrhoea, lymph node pain) and having also been written off as a total loony who's imagining it all, I'm naturally interested. For my part, I'm happy to accept my HIV- status, even though this does nothing to alter the symptoms.

So, over to you. What do think? Am I right? Am I wrong? What do you think is the matter with "julio"?

Answers such as "he's a wacko", "he's a loony", "he's a weirdo" etc. aren't allowed without a full explanation, nor are "get real", "stop obsessing" or "move on"!

To help out, here's a chronological account of our friend's history. He's posted more than this, but I can't remember where the others are.

Prolongued Acute Viral Syndrome-julio
By Joel E. Gallant, M.D., M.P.H. (17-Sep-1998)

Dear Dr Gallant, I had a high risk exposure on February 26, at 6 weeks I developed
malaise, fatigue, a red rash in my upper roght arm, Lymphadenopaty, and an
enlarged spleen. Six months later, after losing my job, the symptoms continue and I
am bedridden most of the day. My lymph nodes hurt, specially my groin and axilla,
and the spleen is enlarged and hurts at night. Test results are as follows:
- at 8 weeks, negative Eliza and undetectable vl by PCR RNA at 400 copies, 1072
t-cells.
- at 12 weeks, negative Elisa, undetectable VL by PCR RNA at 400 copies, 960
t-cells.
- at 16 weeks, negative Elisa, undetectable VL PCR RNA, only 610 t-cells.!!
- at 19 weeks negative Elisa
- at 23 weeks, negative Elisa (HIV1-HIV2)and WB, undetectable VL PCR RNA at
400 copies.
- at 26 weeks negative Elisa.
- AT 28 weeks, undetectable PCR at 400 copies, 880 t-cells.

I AM QUITE SICK AND EVERY LYMPH NODE IN MY BODY IS
ENLARGED AS WELL AS MY SPLEEN. I tested negative for toxoplasmosis and
CMV.
lOCAL DOCTORS WILL NOT TREAT ME WITHOUT MORE EVIDENCE.
WHAT SHOULD I DO?????

julio

Stop assuming you have HIV (you don't) and let the doctors try to find out what you
really DO have.

Age/HIV Progression
By Joel E. Gallant, M.D., M.P.H. (15-Oct-1998)

I am recently diagnosed and I took 7 months to seroconvert, I was negative on Elisa
and undetectable VL at 400 copies at 2,3,4,5,and 6 months after infection. Finally in
the seventh month after exposure I seroconverted. My t-cell counts were 1060 at
two months, 960 at 3 months 610 at 4 months and rebounded to 880 at 6 and 1/2
months. I had lymphadenopathy since the beginning and now it is extended to every
lymph node in my body.
I will soon have a t-cell count and VL to determine treatment options. Various
questions:

- Why did I take so long to seroconvert? I also tested positive for EBV on all titer
measures. Could that have affected seroconversion? Could age have affected
seroconversion? I also had a very long AVS perhaps caused by coexisting EBV?

- There are various studies state that at my age and the extended AVS (sick for 4
months)I will progree to AIDS in a short period of time( 5-6 years) Any way to
delay that?

- Are there any implications to the five undetectable viral loads or the
lymphadenopaty or is it that the virus is just hiding in my lymph nodes (very enlarged)
and will be released to
my blood in the near future.

- My doctor is conservative and wants to wait for treatment unless VL > 10,000. I
feel that we should treat right now if there is a detectable VL to bring the virus down
and restore whatever immune function may be left in terms of CD4 cells that may be
active against HIV. At my age I do not have a thymus.

- Do you have any cases of people in late fifties who have responded well and lived
over and above the statistical averages?

Long question but it is important for treatment and other decisions.

First, the thymus: none of us have the big active thymus as an adult that we had as a
kid. So you are in no different category than any other HIV-infected adult.

Second, the age: you are not elderly by any stretched definition. Younger age has
been associated with improved survival from HIV in some studies from other eras
(pre-HAART). This is the HAART era, and people in their fifties do respond to
HAART if they follow the same rules that other folks taking medication do.

Third, the long seroconversion period: I cannot think of any scientific reason to bring
the mono into explaining this. Of course, your story is now going to send everyone
who had a possible exposure and just got their negative 6-month follow up test back
into a panic. I almost did not answer your question for that reason. You might be
what what statisticians call "a statistical outlier." Late seroconversion happens, but it
is a very rare event.

Last, "the treat early or observe?" part of your question: there are good arguments on
both sides of that question and the best decisions are based on individual (patient)
preference and life issues (not age necessarily, but medications fitting into a routine
and being tolerated). Your viral load and CD4 count are the most important
laboratory predictors of the risk of getting sick quickly. They should weigh in heavily
in making your decision.

Delayed seronversion: should I start?
By Joel E. Gallant, M.D., M.P.H. (15-Mar-1999)

I am the person who converted at 13 months and recently asked you whether
treatment after seroconversion would be considered "early treatment" in my case.
You did not answer because you are concerned that the "worried well" will start
testing up to 12 months. However, mine was a very unique case in that I always had
PGL, visible rashes, and great malaise.

Still,I went to four different specialists, the NIH at Bethesda, and a very famous
midwestern clinic before I was finally diagnosed back home. I had 8 negative Elisas,
two negative Western Blots, and 6 undetectable PCR'S ( 3 at 50 copies) before
finally testing positive at 13 months.

The diagnoses were that I was obcessive-compulsive, delusional, a hypochondriac,
and even psychotic. More than one doctor told me that I had to have my head
examined but in the meantime the swollen glands went from my elbows to my armpits,
to my groin, to my thighs, to the back of my knees. Nobody wanted to look at my
swollen nodes because the tests tell so much more!

Are you going to answer my question now??

How do you know why I didn't answer your question? Couldn't it have been for the
same reason that dozens of other questions go unanswered each month (usually lack
of time on my part). Couldn't it also be that it's on my list, along with so many others,
but that I haven't got around to it yet? Is it necessary to invoke blatant censorship on
my part to explain why your own particular question didn't get answered?

I have never said that it is not possible to seroconvert after six months; I have simply
said that it is a very rare occurrence. If what you say is true and you're certain about
your date of infection, then you're one of those rare people who took longer than six
months to seroconvert. And if as a result of posting this question thousands of
"worried well" readers suffer sudden exacerbations of their obsessive-compulsive
disorders, I'm sorry for them, but I'm going to have to delete their questions, just the
same.

All right then, despite your accusatory tone I will try to address your question. If I
remember correctly, you wanted to know whether starting therapy now would qualify
as "early treatment" since you've been infected for over a year but only seropositive
for a short time. There's no answer to this question, since the benefit of early therapy
is still not well understood and since your situation is so unusual. When we think about
early treatment, we're most interested in the time from primary viremia (the acute
retroviral syndrome) rather than the time from infection or time from seroconversion.
However, you don't really know when this occurred, so it's hard to say whether you'd
get the same "early treatment" benefit. I would imagine that anyone who tried to
advise you would be guessing, so the decision will probably have to be based on your
own preferences. If you start now, you might still be getting the "early treatment"
benefit, and even if you don't you'll be getting the usual benefit. On the other hand,
you have to weigh the downsides: toxicity, cost, compliance, resistance. There's no
single right answer."

By Joel E. Gallant, M.D., M.P.H. (30-Sep-1999)

I was infected in February 0f 1998 with no further exposures, my humbers are as
follows:
CD4 T4/T8 VL
April of 1998 1060 2.7 <400
May of 1998 960 2,5 <400
July of 1998 610 2.3 <400
August 1998 900 2.5 <400
November 1998 1065 2.3 < 50
February 1999 1050 2.3 < 50
May 1999 1170 2.1 <200
August 1999 na na <400
September 1999 Reactive HIV-SCREEN AND WESTERN BLOT.
So I took 19 months to seroconvert and the reason I kept testing is that I had
continuously painful lymphadenopathy since April of 1998 which was progressive
from axilla to ribs, to groin, to
thighs, and starting in my neck currently. I also had chronic diarrhea for three months
which is now more or less under control, and fatigue which has improved somewhat
since seroconverting. My questions are:
- should I consider therapy if anything to alleviate current symptoms or continue to
take 8 advil a day, hot tubs, and topical lotions for the lymphadenopathy?
- does my history so far make me a probable long term non-progressor?
I am 59, 6'1", 250. I hope you will answer this question although I understand the
implications for your forum, but I am trying anyway because you are the tops and it is
my life that I will be fighting for.
Thanks.

Maybe you’re leaving something out, but you don’t say anything that convinces me
that it took you 19 months to seroconvert. The fact that you had a reactive ELISA
and Western blot in September doesn’t mean that you didn’t have one before, nor
do we know for a fact that your infection took place in February of 1998. I can’t
imagine why a physician would order eight viral loads and CD4 counts on someone
who had not evidence of infection. You also need to confirm the diagnosis of HIV
infection with a repeat serology, since there is no evidence of of HIV infection based
on viral load or CD4 count.

There is no evidence that you need antiretroviral therapy at this point, since your viral
load and CD4 count are normal. However, it’s much too early to say that you’re a
long-term non-progressor.

"Laboratory Results and Clinical Status - AP (November 23, 1999)
http://www.thebody.com/cgi/treat_ans/12532Lab.html

Question:
Dear Doctor, I have had enlarged lymph nodes all over my body for almost two years after a high risk exposure, they were very tender for about a year and now are non-tender although they itch at times. I have also had other symptoms including fatigue, oral ulcers, chest rashes, dizziness, and malaise. As you can imagine I have had a bunch of tests, including many screens for HIV-1 and various DNA and RNA tests which so far have been negative. From June to September 1999 I had chronic diarrhea but no pathogens were found (ova/parasites, culture, colonoscopy and endoscopy)and an HIV DNA (qualitative)test as well as 2 HIV-1 screens were negative. In October 1999 I got shingles and was treated with acyclovir cream and FAMVIR tablets, at the same time the HIV-1 screen was negative and VL undetectable at 20 copies. In November, the doctor tested me for various viruses and my IGG'S were 1:1280 for toxoplamosis so I am beign treated with BACTRIM twice a day. I also had high IGGs to EBV 1:640, but I have always had high titers to EBV dating from a 1989 infection. However, the rise in TOXO titers is recent. More recently, the doctor ordered a blood culture which is going to take a few weeks but which he says should be definitive. However, he wants to continue to see me every 3 months for follow-up even if there is no HIV in the culture. As you can understand I am now a nervous wreck since the tests are all negative but I have diseases and conditions that are common with HIV infection. My t-cells jump all over the place between 600 and 1100. Latest count in November was 1070. Have you ever seen a case like mine? Any suggestions?

Response:
It sounds like your doctor is doing very rational things. After double and triple checking for HIV, he has been checking your immune function, and your CD4 cells are normal. I doubt you have HIV or HIV-2.

We have seen very severe illness with acute toxo in young persons with fevers, fatique, painful lymph nodes and the like. However, you should have a high IgM. Shingles does occur in perfectly normal people and can also be precipitated by stress, so it does not automatically mean you have an immune problem. I assume that you are being tested for things like lupus, syphilis, HTLV, tuberculosis and the like. I think following you carefully to see if things return to normal is important, and there are a number of causes of swollen lymph nodes which will improve.

I think you can likely exclude HIV though. Good luck

Andrew T. Pavia, M.D.
University of Utah
School of Medicine"

Re: progressive lymphadenopathy
By Joel E. Gallant, M.D., M.P.H. (29-Jul-2000)

Well you do know about my case, I am julio and we discussed my unusual
progression a couple of times over the telephone. Viral load always undetectable,
t4/t8 ratio always >2, t8 always 300-400. The CD4 trend is as follows:

2/98 exposure
4/98 1072
5/98 960
6/98 610
7/98 884
9/98 1065
5/99 1160
10/99 1370
11/99 1170
2/00 1170
5/00 960
7/00 820

Infections: 5/99 to 9/99 continuous diarrhea, 10/99 shingles, 2/00 E.coli. Also
hospitalized 1/00 and 3/00 with malaise and enlarged groin lymph nodes.

Lymphadenopathy is generalized. Groin, abdominal, and stomach area lymph nodes
are more recent and painful. Arm, axillary, rib cage nodes are older and no longer
painful. Hundreds of lymph nodes but non pathological (lymphoma, etc.)

Doctor will not treat and expects situation to eventually stabilize. I am in favor of
treatment due to: 1) painful nodes and spleen, 2) CD4 recent trend, 3) give immune
system a break!!
4)getting infections and getting sick (now I have psoriasis). I am sure lymphatic viral
load much, much higher than in blood. I have fatigue, malaise, and sleep 12-14 hours
per day.

Please advide and thank you very much. What would you do??

julio,
I've given you my advice, and it hasn't changed: Don't assume that your
lymphadenopathy is due to HIV infection (it's probably not). Find out why you have
it. If I remember correctly, you've never had a lymph node biopsy.

delayed seroconversion (August 23, 2000)
http://www.thebody.com/cgi/viralload_ans/26735del.html

Question:
Dear doctor, I just seroconverted after 30 months since exposure. YES, 30 MONTHS. During this period my viral load was always undetectable, I had a negative DNA PCR, a negative culture for HIV-1, but I always felt sick and my lymph nodes were always enlarged and painful and my spleen was also enlarged. The exposure was early in 1998 and I had ARS six weeks later, chronic diarrhea for five months in 1999, shingles in October of 1990 and E.coli infection in February of 2000. My t-cells dropped initially from 1100 to 600 at three months from infection and then slowly crept back up to 1300. Then, I had the shingles and since that time my t-cells dropped to 800 although I maintained an undetectable VL. My theory is that initially I had a very strong cellular response but the virus remained in resting cells which were then reactivated by the shingles. Do you have any ideas as to why it took so long?? Is it a good or a bad sign that I took so long to seroconvert?? I want to start medication because my immune system feels overtaxed (the lymph nodes in my groin are very large and painful). My doctor says they are helping me but he has not gone through the continuous pain!!..and my t-cells are dropping. Would you treat?? I hope I do not scare everybody/Regards.

Dr. Holodniy's Response:
No idea about the seroconversion length of time or prognosis. Many doctors at this point would be hard pressed to start treatment in you given your very high CD4 count and undetectable viral load.
MH

Mark Holodniy, MD, FACP, CIC
Assistant Professor of Medicine
Stanford University

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