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Treatment side-effects

I might have been infected in 1991. I didn't acknowledge it until1998 when I was very sick and in and out of hospitals. I weighed 135 lbs and had a viral load of 340,000. My first attempts of anti-viral therapy were flawed. The first round lasted two days before I threw up my Videx right after taking it in the morning and was in so much pain I called an ambulance. I didn't know I had Hepatitis A too. My second attempt ended up with neuropathy in five months. My third attempt caused me to get into a state where I threw up every morning like clockwork. Then it stopped working after a year and my viral load went back up over 25,000. But my fourth attempt worked; I've been on the same medications since Sept 1999 (well Videx is now Videx EC and the original doses of Agenerase and Norvir were too high and have been
lowered plus one other change I write about near the end of thismessage.)

I think a lot of the vomiting side-effects were due to liver damage from the Hep A making me unable to clear out the anti virals as fast as a person with a healthy liver. I had elevated liver enzymes on my lab tests from 1998 to 2002. I think it would have taken less time if I had just Hep A and not all the toxic medications to deal with too.
At least I managed to completely kick drugs and alcohol; I have been clean for over five years now. With a liver like mine I could be dead if I hadn't gotten clean and I'll never forget it you know!
During that time period I went from a nutritional supplement non-believer to a heavy user of a custom regimen of nutritional supplements. I used advice from a large number of sources but in the end it came down to trial and error. I never lost my job although I was away for some time due to hospitalizations I went back to working. My doctor advised that I did just that saying I wouldn't like being unemployed and I have to thank him for it but sometimes I'm really
xhausted after work. That's what sold me on nutritional supplements--I'll eat dinner and give myself some time to digest but then I'll take the pills and that's when I'll start to feel normal again. I've also been spared from major effects of lipodystrophy and l think the right supplements can help some there but it's really more complicated than any one treatment approach can deal with. I'm one for attacking a problem from multiple angles.
Speaking of angles I should mention that one day during a doctor's visit my doctor quickly mentioned that my testosterone level was low. It was the first time I had heard anything about it. We probably only spent ten seconds discussing it. He said he needed to wait and see what a second test later would be like. Things got worse months later. I started doing my own research and discovered Nelson Vergel's world. Nelson's a great guy, I've seen him speak once in public and seen this web site: http://www.medibolics.com/

I don't do everything exactly Nelson's way though. I also discovered Dr. Jon Kaiser's work around the same time.
http://www.jonkaiser.com/

I'm somewhere between the two in terms of hormone replacement. My current technique is to shower in the morning then lift dumbbells until my arms and shoulders are pumped up and then put one blue packet of Androgel on each arm. I try to make it into the gym a couple times a week but it's much easier to work out at home since it's so quick.
I just slap some Underworld or Daft Punk or whatever on the stereo and get to it.
I also discovered Dr. Kendall A. Smith's work.
http://www.kendallasmith.com/

I have actually attempted some of his ultra-low-dose IL-2 strategy. My doctor really helped, I didn't think I could get IL-2 covered by my insurance but he knew the tricks. I'm not sure if it would work again after the US economy tanked but it was great at the time. I did my own tiny injections of IL-2 in my legs (didn't want to mess my belly up) and my CD4 T-cells eventually went up over 1000. The injections did not make me sick since the dose was deliberately set very low but the spot where I would inject got very sore like a bee sting and sometimes it hurt to walk. I injected every night before bed for 21 days and then only took a short break while I was waiting for more of the IL-2 to be delivered and then did it again for another 21 days. Then I took a somewhat longer break and repeated the same process. I was being tested every two weeks since my doctor was concerned something might go wrong but my T-cells climbed up from the 600's to over 1000 in four months.

Looking back my poor insurance company really got hit hard but at the time I was so caught up in it I
didn't think twice. My motivation for doing that was that I wanted to do treatment interruptions. I was really upset by idea of taking anti-virals forever since then my anti-virals were a real drag. I had to take the horrible chewable Videx and my Agenerase and Norvir levels were too high since we started this combination before there were trials done on it and the FDA ended up approving less but my previous treatment had failed and this was a hit-hard approach. I did the IL-2 since I thought that if my T-cells were really high I would do better when I stopped taking the anti-virals. I had also planned to take only very short treatment interruptions at first and get tested after them and see what things where like. I planned on being off medication for only two weeks the first time. I stopped doing the IL-2 for about a week before stopping the anti-virals. That was where Dr. Kendall Smith and I differed; his trials were about keeping up the low-dose IL-2 while being off anti virals.

What happened is that I ended up feeling very fluish after only a fewdays and ended up aborting my first treatment interruption just short of a week. Exactly why this happened I'll never know for sure but my pet theory is that my high CD4 T cell and NK cell count met with a sudden surge of HIV and the NK cells released a lot of cytokines causing flu like symptoms. I waited a couple months and my test results came back with the viral load being undectable and I tried it again with a full week off. I repeated that schedule with two months on anti-virals and a slightly longer time off, first two weeks and eventually three and four. I also got into the hang of scheduling things so I could be tested on the last day off the anti-virals to see the maximum viral load.

Toward the end I was getting up to 3000. Much better than the old 340,000 but I wasn't really convinced this was the way to go. My CD4 T-cell count was coming in higher than before I started this madness, er method. For years on conventional take-it-all-the-time therapy my CD4 T-cell count was always in the 600's and now I was getting 800's. Then I discovered Dr. Mark Dybul's work with week-on/off.
http://hermes.tubas.net/HIV/Mark_Dybul_MD_on_treatment_interruptions.pdf


I went back on anti-virals for the usual two months and as usual the viral load dropped to undectectable. It was Febuary 2002 and I started not with week-on/off but with only five days off and nine days on. After two months I got tested on the exact last day off anti-virals during my cycle and the tests came back with my HIV viral load undectectable. I gave myself another day off making it six days off and eight days on. I repeated it again and by July 2002 I was doing a full week-on/off with fully suppressed HIV. I never lied to my doctor about what I was doing but if I wanted to I could go to a completely different doctor and lie my ass off about always taking my medication and how would he know? I could pass for strict adherence:)
The last angle I have been exploring is gut health. I think Dr. Jon Kaiser does an excellent job of summarizing the facts on this web page: http://www.integrativehealthconsulting.com/educate/0104transcript/two.html

A full medical report from Dr. Michael A. Poles called "HIV and the Gut: Feeding the Enemy" is also an excellent source of information: http://hermes.tubas.net/HIV/hiv-gut-poles_v5n3.pdf

 

Sent via Email Mar 15, 2004 from Takoma Park, MD USA.

 
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