My Case History - TheBody.com's Bulletin Boards

I thought posting my case history might be useful to others since I
have done well with the somewhat exotic therapies that I have used
over the years.

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I am a 38 year-old male who was infected with HIV probably in 1991 or
1992. In 1995 I developed persistent peri-ocular dermatitis. Use of
topical corticosteroid ointment suppressed the symptoms but for years
if I stopped taking the treatment the dermatitis would return even if
the treatment went on for months prior to stopping. In 1997 I was at
a camp site with four friends. We all ate contaminated meat by
mistake. The others got a bit sick but I alone got acute
gastroenteritis which eventually led to an emergency room trip for IV
fluids and took many weeks (and much Metronidazole) to recover from.
It is clear to me that my immune system was not up-to-par with the
immune systems of other healthy people.

I did not receive a diagnosis of my HIV infection until Jan 1998 but
by then I had a viral load of 340,000 copies/mL using PCR. My CD4
T-cell count, while still high then declined a full 9% in just three
months while under observation but prior to initiation of HAART (CD4
595 abs, 41% on 24-Feb-1998 went to 486 abs, 32% by 14-Apr-1998.) I
was co-infected with HVA (viral Hep A) during that period and it was
probably driving the HIV VL up since it is the activated immune system
that is the best breeding ground for HIV. I was unable to take HAART
since my liver did not allow me to tolerate it. Eventually the Hep A
cleared and in about four years my liver enzymes returned to normal
levels. I believe that the HAART was responsible for prolonging the
period of elevated liver enzymes. I was using nevirapine back before
it was known to be very hard on the liver.

My doctor gave me the choice of starting HAART as either PI-sparing,
PI, or SAQ/RIT (double PI). I chose the PI-sparing due to concerns
with side-effects. The initial combination was ddI, d4T,
hydroxy-urea (HU) and nevirapine. It was a poor choice as the ddI/d4T
led to neuropathy in five months while the viral load was not fully
suppressed below 3000 copies/ml. Since I was experiencing neuropathy
my doctor switched me to AZT/3TC and nevirapine. I developed
persistent nausea with vomiting every morning due to the AZT and my
viral load was not fully suppressed either. May 1998 - Sept 1998 was
neuropathy. Sept 1998 - Sept 1999 was the vomiting. Treatment failure
occurred in Sept 1999. I remember coming to my doctor and complaining
about feeling very bad. He seemed to be very interested in getting me
to use an anti-depressant. I was incensed by his reaction and
insisted to have a PCR. My VL was up over 12,000 - 18,000. It seems
like such a disaster in terms of treatment but it is a distant memory
since things are so much better.

Some facts about my body. My skeleton is asymmetrical. If I stand on
my left leg my height is 5' 9", on the right I'm 5' 9.5". In early
1998 during my health crisis my weight was as low as 135 lbs. While I
was recovering that year I ate to gain weight but did not exercise (I
had a lot to learn then) and got to an out-of-shape 176 lbs. I was
always a skinny child (not interested in sports) and prone to
illnesses. The 176 is the most I've ever weighed in my entire life.
My wrists are only 6.5" in circumference. I get the small frame
modifier on the Hamwi Formula for Ideal Body Weight (see
http://fshn.ifas.ufl.edu/kauwell/sb.htm )

By May 1999 my doctor told me that my testosterone level was low but
since he only had tested me that once he decided to wait and see what
was happening over time. By September of 1999 I remember personality
changes--I was staring to worry all the time about everything.
However, during that time frame I was made aware of Dr. Jon Kaiser by
other friends and bought his second book _Healing HIV_ which I
followed with great enthusiasm. It was his writing that inspired me
to start progressive resistance exercises. This was right at the time
when my first HAART treatment failure happened on a PI-sparing
combination and I started PI's in Sept 1999 and weight lifting in
October 1999.

Based on Dr. Jon Kaiser's writing I started taking DHEA
supplementation in November 1999. Dr. Kaiser reported that he often
prescribed as much as 200mg qd of DHEA. I decided to start with a
much lower dose, only 5mg qd. I am very glad that I did that because
I proved to be extremely sensitive and had to reduce the dose quite a
bit to find a level that I was comfortable with. In the beginning I
found that I had emotional problems on more that 2.5mg taken only
every Wednesday and Sunday (just two days a week.) I was OK on that
extremely low dose and I started to virilize, developing considerable
additional body hair in a few months. While DHEA was very androgenic
to me it was not at all anabolic and I lost a lot of weight very
rapidly falling from 176 lbs to about 155 in just a few months between
the DHEA and the weight lifting. Over time my tolerance for DHEA
increased and now I routinely use either 5m or 10mg every day.

Very soon after that I discovered Nelson Vergel's web site and bought
his _Built To Survive_ book. The exercise program it described became
the standard one that I used. After reading his book I spent time
contemplating the use of anabolic steroids. In June 2000 I used
anabolic steroids for the first time, obtaining a prescription for
Anadrol-50 from my doctor. The dosage was a small "diamond cycle" I
designed for myself as a limited test to see what they would be like
for me. Here is the schedule I used:

------ -dose pills date range----------- weight at start of week
week 1 25mg 3.5 2000-06-13 2000-06-19 152lbs empty, 155 full
week 2 50mg 7.0 2000-06-20 2000-06-26 158lbs empty, 163 full
week 3 75mg 10.5 2000-06-27 2000-07-03 160lbs empty, 162 full
week 4 100mg 14.0 2000-07-04 2000-07-10 160lbs empty, 166 full
week 5 75mg 10.5 2000-07-11 2000-07-17 160lbs empty, 167 full
week 6 50mg 7.0 2000-07-18 2000-07-24 160lbs empty, 168 full
week 7 25mg 3.5 2000-07-25 2000-07-31 162lbs empty, 166 full
total 57.0

I actually veered off the cycle a bit at its peak and ended up using
all 60 Anadrol-50(R) pills that were prescribed to me by taking the
three extra pills, one a day in the very middle of the cycle so the
100mg qd during week four was actually 150mg qd for three days. My
liver enzymes went up drastically and I decided not to use
Anadrol-50(R) again. I used nandrolone decanate and depo-testosterone
for ten weeks from Sept to November 2000. I did not taper the dose at
all. Every Wednesday morning I would self-inject a single syringe
with a mixture of 200mg nandrolone decanate and 200mg
depo-testosterone.

------- date range----------- weight at start of week
week 1 2000-09-20 2000-09-26 163lbs after breakfast
week 2 2000-09-27 2000-10-03 164lbs
week 3 2000-10-04 2000-10-10 165lbs
week 4 2000-10-11 2000-10-17 168lbs
week 5 2000-10-18 2000-10-24 170lbs
week 6 2000-10-25 2000-10-31 174lbs
week 7 2000-11-01 2000-11-07 174lbs
week 8 2000-11-08 2000-11-14 174lbs
week 9 2000-11-15 2000-11-21 175lbs
week 10 2000-11-22 2000-11-28 175lbs

I was also co-administering Androgel(R) 1%, 50 qd which I started June
30, 2000. When I stopped the injections I continued the Androgel(R).
My appetite was enormous and my strength made great gains. I was up
to working out three days a week, different muscle groups in rotation.

My first and second BIA tests
+------+-----------+-----------+
| |30-Jun-2000|13-Oct-2000|
+------+-----------+-----------+
|weight|157.5lbs |170lbs |
+------+-----------+-----------+
|BCM |65.3lbs |71.5lbs |
+------+-----------+-----------+
|FFM |130.7lbs |144.2lbs |
+------+-----------+-----------+
|ECM |65.4lbs |72.7lbs |
+------+-----------+-----------+
|TBW |41.8liters |47.4liters |
+------+-----------+-----------+
|FAT |26.8lbs |25.8lbs |
+------+-----------+-----------+
|úT |17.0% |15.2% |
+------+-----------+-----------+
|PAA |7.4degrees |7.0degrees |
+------+-----------+-----------+

It is important to know that during this time frame I was also
experimenting with a very cutting-edge approach to using
Interleukin-2. Dr. Kendall A Smith who ran the lab where IL-2 was
discovered was and is convinced that the standard approach to using
IL-2 to treat HIV symptoms is completely wrong and bad. Instead of
cycling on and off extremely high doses of IL-2 (which are highly
unnatural) you should administer as little as possible to do the job
of signaling CD4 T-cells without signaling NKs since NK activation
leads to many unpleasant side-effects and is of little or no benefit
to HIV. By using an extremely low dose for a long time you would
eventually end up with a large CD4 T-cell elevation and there would be
no need to discontinue the IL-2 therapy if desired since the
side-effects were minimal. In fact you could discontinue HAART
instead since your immune system would be supported by the IL-2.

Unfortunately, it is hard to get Proleukin(R) brand IL-2 without being
in a trial. It is also expensive, and requires constant refrigeration
and causes injection site irritation. In 2000 I could receive 2
bottles of Proleukin(R) -- it made no sense to stock up since it was
so volatile. I would fill as many 0.5cc insulin syringes as I could
with about 1.5 - 2.0 MIU doses of Proleukin(R) and keep them in the
refrigerator. The bottle claimed to contain 11 MIU of IL-2 and I
could get about 21 syringes out of that (after some practice--I got
less at first.) I would inject before bedtime since the injection
site would become very sore and that way I would not have deal with
walking on a leg that was in pain. I would keep up using one
injection a day for three weeks and when I ran out it was difficult to
re-order (I was using a mail-order pharmacy which is the only one my
insurance would accept) plus I would be very wounded from having
masses of injection site sores. I repeated this cycle four times.

Start Date End Date
Apr 24, 2000 May 14, 2000
May 26, 2000 Jun 11, 2000
Jul 27, 2000 Aug 17, 2000
Aug 28, 2000 Sep 16, 2000

The Anadrol-50 cycle was run between the second and third IL-2 cycle.
This was not really planned, but I think it was fortuitous since the
extra strength and increased body mass and appetite made the IL-2
easier to endure. My CD4 T-cell counts prior to the IL-2 were doing
OK since I had achieved a fully-suppressed viral load with my new
PI-containing HAART. I was actually on a bit of an overdose of PIs.
My doctor had insisted that I use a ritonavir-boosted combination. I
wanted to use amprenavir since the side-effect profile was superior
(it has less effect on metabolic parameters.) There was no data on
amprenavir/ritonavir dosing so he decided to only lower the amprenavir
dose from 1200mg bid to 900mg bid and use ritonavir at 200mg bid. The
other medications in the combination were abacavir and ddI. Years
later the FDA approved 600mg AMP / 100mg RIT bid. I first cut the RIT
I was taking to 100mg and later switched to using only 750 AMP. I
have yet to reduce the dose to the FDA-approved levels.

Apr 24, 2000 (before Proleukin(R) and Anadrol-50(R))
<50 copies/mL HIV-1 RNA
CD4 absolute 650/CMM (in range 400-1500)
CD3+/CD4% 34.9% (in range 33.5-61.1)
155 lbs weakling

September 20, 2000 (after fourth cycle)
<50 copies/mL HIV-1 RNA
CD4 absolute 1042/CMM (400-1500)
CD3+/CD4% 40.4% (in range 33.5-61.1)
163 lbs bodybuilder

At this point I am going to reveal my master plan. My experiences
with HIV had revealed to me that the FDA-AMA-Pharmaco approved
treatment for HIV/AIDS with all its happy-sounding names of "HAART"
and "cocktails" was really a deception as if some conspiracy was
painting smiley faces on chemotherapy. What was in store for me if I
chose to go down that road forever was a miserable lifetime of
ever-increasing side-effects as treatment failures wiped out my
options. I was stuck in a position where I was dependent on toxic
medication and while the medication was wonderful if you were in a
health crisis it had a terrible cost/benefit ratio as a maintenance
therapy. I knew that I had to get off the stuff as much as possible
but I feared treatment interruptions since I was in such bad shape. I
had to re-shape myself so that treatment interruptions were a
reasonable possibility. In late September 2000 I decided that I was
now fit enough to interrupt HAART without much risk. I figured that
anyone in as good shape as me could spend two weeks off HAART.

What I didn't think about was the question "what happens when your
immune system is really stoked by IL-2 and suddenly it is confronted
with a powerful HIV infection?" I think the answer was "cytokine
storm." I got very ill when I went off of HAART that time.

September 27, 2000

Start of first treatment interruption.

September 30, 2000

Started feeling feverish in bed at night.

October 1, 2000

"fluish" symptoms: aches, fever.

October 4, 2000

Restarted anti-virals. Was off for 6.5 days. Aborted my plan to
spend 14 days off.

Sure it could have been a co-incidence that I got sick then but I was
so very healthy and I recovered fast after restarting HAART. I
decided to try interrupting HAART again, this time planning to only be
off it 7 days from Nov 8, 2000 to Nov 15. I felt very run down and
fatigued at the end of the week by I was not violently ill like the
first time. I had not used IL-2 since Sep 16, 2000 so the effects had
a month to wear off. I had decided to use progressively long
intervals off HAART but not until I had time to recover and be tested.

October 25, 2000 (during recovery phase)
<50 copies/mL HIV-1 RNA
CD4 absolute 811/CMM (400-1500)
CD3+/CD4% 37.3% (in range 33.5-61.1)

January 8, 2001 - January 24, 2001
Third HAART interruption, this time for 16 days

January 24, 2001 (last day of 3rd interruption)
VL 3,882 copies/ML PCR
CD3+/CD4+ abs 620 /CMM (35.3%)

May 14, 2001 (during recovery phase)
VL <50 copies/mL HIV-1 RNA Ultra Quant, RT-PCR
CD3+/CD4+ abs 740 /CMM (37.0%)

May 25, 2001 - June 14, 2001
Fifth HAART interruption, this time for 20 days

June 14, 2001 (last day of 5th interruption)
VL 1053 copies/mL HIV-1 RNA Ultra Quant, RT-PCR
CD3+/CD4+ abs 714 /CMM (34.0%)

August 26, 2001 (during recovery phase)
CD3+/CD4+ abs 626 /CMM (39.6%)
viral load not taken

October 3 - 29, 2001
Sixth HAART interruption, this time for 25 days

October 29, 2001 (last day of 6th interruption)
VL 3292 copies/mL HIV-1 RNA, PCR, 2ND GEN, ref < 50 Copies/mL
CD3+/CD4+ abs 748 /CMM (31.8%)

December 7, 2001 (during recovery phase)
VL <50 copies/mL HIV-1 RNA, PCR, 2ND GEN, ref < 50 Copies/mL
CD3+/CD4+ abs 859 /CMM (38.7%)

I stopped doing this because the amount of time on drug was too great.
I needed more time off HAART. About that time Dr Mark Dybul was
conducting tests of a new kind of treatment interruption: short-cycle
Structured Intermittent Therapy (SIT.) I decided it was for me.

Unfortunately, there was a lapse in my record keeping. I assume I
started SIT in February 2002. One thing is for sure, the original
on/off cycle I chose was nine days on - five days off.

April 8, 2002
VL <50 copies/mL HIV-1 RNA, PCR, 2ND GEN, ref < 50 Copies/mL
CD4+ 654 absolute, 39%

After receiving the April 8th test results (some time in April) SIT I
gave myself an extra day off so I was on an 8-day-on, 6-day-off cycle.

July 19, 2002
VL <50 copies/mL HIV-1 RNA, PCR, 2ND GEN, ref < 50 Copies/mL
CD4+ 953 absolute 47%

After receiving the July 19th test results (some time in July) my SIT
cycle was switched to an 7-day-on, 7-day-off cycle. This cycle has
not been changed.

October 25, 2002
VL <50 copies/mL HIV-1 RNA, PCR, 2ND GEN, ref < 50 Copies/mL
CD4+ 656 absolute 39.4%

January 17, 2003
VL <50 copies/mL HIV-1 RNA, PCR, 2ND GEN, ref < 50 Copies/mL
CD4+ 733 absolute 40.2%

So here I am doing week-on/off HAART.

Post Extras: Remind Me!