Suspending One's Drug Regimen: When to Start and When to Stop
Living with AIDS is a game of strategy and timing -- a very serious game since our lives depend on not only how we play but that we play. Coexisting with such a demanding and draining visitor is not a spectator sport. There are no bleachers. Our approach needs to be strategic and designed in such a way that we don't exhaust ourselves. We must be aggressive enough in our decision-making and self-care that we remember that we are as much a player in this game as are the virus and our drugs. Like any good engagement, the actions are either one of defense or offense. There is a time to be passive and receptive. There is also a time to get the juices flowing and assert yourself in an all out assault. This can not only frighten the opponent but the adrenaline rush you get from taking the upper hand can actually get you a few points up and boost your own self-confidence.
A new strategy being utilized is that of taking a responsible, reasonable and well-timed time-out from drug regimen. Whether you label it HAART interruption, pulsed therapy or structured interruption of therapy, you find yourself defying conventional wisdom and cutting off what has been your main defense against HIV and AIDS. If the time-out is called when you are ready, the results can be empowering -- boosting your heart, your mind and your spirits, not just your body. Be very clear: a time-out from the drugs is no "time-out" for you. On the contrary, you are going to be involved like at no other time in recent memory, taking on more responsibility for yourself than you have in a long time, both in the concept of healing and in the action of healing.
Advisable? Answers vary according to whom you speak. What available research exists is sparse, though not totally discouraging. Like so much that has preceded this, we are the research. No one will actually say that this is a tried and proven therapeutic approach that those with HIV should seriously consider. However, those venturing into these uncharted waters will generally say that the risk is worth it, and that you should be ready to regroup quickly if your body does not respond appropriately. A time-out should be taken as a chosen plan of attack, not a rebellion against the doldrums of a drug regimen born of frustration. Across the board, those taking time-outs do so for personal reasons knowing full well that there are medical risks, but also knowing that their quality of life can improve and their bodies can be somewhat detoxified from the cumulative effects of long term drug therapies.
So what does one of these time-outs actually look like and how did it play out? The nature of a competitive game of one-on-one best describes the energy flow. I'll share my experiences with you seasoned with some observations and conclusions.
In May of 1998, I had been on a combination of d4T, Viramune, Viracept and Saquinavir plus Bactrim, Cytovene for CMV colitis and a maintenance level of testosterone and B12. My viral load was holding around 30,000 and my CD4 cells were 135. Nothing awful, but we wanted to get the viral load down. At this time I had never thought of stopping cold turkey (except out of frustration, which always went away as an option when I considered the assumed alternatives and results). Some new drugs were coming down the pike that were very promising -- the triple whammy of Sustiva, 1592 (Ziagen) and Preveon. In the time between drugs, I did nothing and simply waited patiently, my CD4 cells dropped to 68 and the PCR soared to 300,000. I got into the expanded trials and started, first with Sustiva and Preveon and then added 1592 soon after. Add to this Crixivan, d4T, plus my usual Cytovene and Bactrim. Like many others, my first few days on Sustiva were spent in Na-Na land, confused and stoned. The strange side-effects abated and my counts did a tap dance -- this time in my favor. CD4 and CD8s were stable but viral load went to virtually undetectable. That was a first I thought I would never see. My body was picture perfect: T-cells, viral load, blood chemistry. However, how I felt was another matter entirely. Six weeks into this experiment and something had to give and it looked like it was going to be me or some aspect of me that shouldn't. We had to do something. Other cocktail options faded. Unfortunately, I had been on virtually every combination since the birth of AZT and had developed reactions or the beginnings of resistance to all of them. We were keeping the low resistant ones in the cupboard in the event that a desperate situation arose, which this was not, at least not yet.
This is where timing and opportunity enter into the game strategy. I didn't say calling a time-out always comes at the best time but, rather, at the most opportune time.
First Step: Consultation
Get your coaches together and assess the situation. Your body's reaction to your current regimen shows how strong you are, how your immune system is reacting and, in a way, how much "gas is in your tank" if you decide to cut from what the drugs have been providing. Also, note how the virus is reacting to its present environment. Remember, whether it originates in you or in a pill that you swallow, the virus is blissfully ignorant of whence his predator comes, only that it is there and in the way. Most importantly, how do you feel? Are you up for a fight? You haven't been absent the security blanket of back-up drugs for a long time. Can you handle it? This decision involves not only how you feel physically but how you feel about yourself emotionally and spiritually. This is a fight, and a fight with no spirit behind it is not something entered into advisedly. In fact, if your heart isn't in it, you could be in relatively good health and actually be setting yourself up for a one-two punch that could set you back even further. This is not to scare you but to impart to you how vitally important the timing of all your actions is going to be during this time. Listen to your doctors. Just because they aren't in the actual engagement doesn't mean that they can't tell better than you the difference between creatively stretching yourself and taxing yourself beyond what is prudent or healthy. Learn all the players' vulnerable points. Yes, contrary to what we think and feel, the virus and the drugs have Achilles' heels which they bare from time to time. Our job is to be vigilant enough to spot these moments of opportunity, surprise them by reversing the tables and then evening up the score and even gaining a point advantage. How long this lasts and when we make that equally powerful decision to go back to a drug-assisted defense is a judgment call. The available research shows varying responses and speed of increased viral load activity. There are emerging patterns of better, faster and longer lasting results after the second time-out. It is important to remember that this is medical and biochemical research. There has been no research on the attitude with which this experiment is done. I would venture to say that active participation in aggressive stimulation of your body can prove to be extremely vital to the outcome. Your body has been in an "immunicological hibernation" while on drugs and must be jolted awake to begin responding. Someone -- you -- must tell your body to react. Again, this is not a passive activity where you sit around and count your CD4s. Nutrition, exercise, mental stimulation -- all are essential in this call to arms. You want to push yourself and test yourself but not to the point that once you start drugs again you are depleted and totally at their mercy. Half of the purpose of this endeavor -- no, more than half -- is that you are putting the virus on notice that it must also contend with you. You are also telling the drugs that they are working not for you but with you and that is how it is going to be from now on. It is a team effort and everybody better get used to the idea. Also, know that this is not the only time out that you will ever be able to call a time-out. Knowing if and when to call time-in is as powerful and responsible a decision as the moment you called time-out.
Next and Biggest Step: Commitment
This is not going on a date that might or might not work out. Nor is it just going to a vacation stop from which you will return safe and sound. This is not rehearsal. This is a very real step into very real living with very real consequences, the nature and beauty and success of which are in your hands and your hands only.
Well, I held my breath and called a time-out. Here was the plan: An anti-depressant got me out of the Sustiva/1592 fog. I started back to the gym. Exercise is great for depression and the oxygenation of the blood does horrible things to the virus (circulation, more oxygen and all those chemicals being secreted in reaction to muscle growth are definitely low on its list of favorite things). We did a baseline test for tracking purposes: PCR 1345, CD4s 56. My body was in good shape and the virus was in a state of relative inactivity -- a good starting point. We would monitor every four to six weeks. I had mentioned prudence in making this decision. You don't throw the baby out with the bathwater. Select what you stop and choose one by one the medications you keep. My t's were still well below 200 (they had once gotten down to 11) so we kept Bactrim and Cytovene. We could not court disaster and I would need my gastrointestinal system and lungs to be in top form to pull off this time-out successfully. Keeping the testosterone and B12 would help in conditioning the body and keeping weight and energy levels up. We discussed vitamin and mineral supplements and the need to eat really well from now on.
So I did it. July 6, 1998.
It takes some getting used to. Your time is your own. There is more shelf space where your pharmacy once resided. There is a new feeling -- one of living in full responsibility. Among other things, being in charge of the chemistry nurturing the body and powering the immune system to do what it can do (and may have forgotten for awhile how to do) is a double rush of panic and accomplishment. When you got your first puppy, there was a fear of doing something wrong or not enough or too much. Your body is like that now. There are no drugs and no timetables to do the work for you. It is the scariest sensation of all but it is also the best of all because the work is totally yours. That can trigger all sorts of good chemistry as well. As you would love and care for and have fun with that puppy, so, too, you must love and care for and have fun with yourself. I occasionally did the wrong thing like staying out too late, eating too much fatty food or getting too tired. And guess what? My body asked for more sleep or passed gas and forgot about it. No drawn out residual reaction like taking a drug at the wrong time or incorrect dosage. You do and try things because you want to or just for the joy of it rather than in fear that by not doing it, something will break. I could get used to this! Feeling better about myself was nurturing and contagious. I found myself meeting people, doing different things and seeing new possibilities. The body and the soul like change and flourish in its presence. Both are imaginative and resourceful if we just put them in a situation to be so. I knew something was going on when I found myself actually laughing (when was the last time you laughed at nothing particularly funny till you cried and could hardly breathe?). After a full day I could be tired and actually fall into a restful sleep naturally rather than after taking two Ambien. I became more aware of what I ate and drank than when I ate in response to a drug regimen. That was very empowering. I remembered past frustrations of going for a walk and then really wanting something to eat, even a candy bar for energy, but had to reject my body's natural request because I had to take my Videx. And we will not even begin to talk about that all but forgotten phenomenon known as bowel regularity. I can truly say that being regular was one of the crown jewels retrieved by calling a time-out. Drug free bowel control, sleep and normal mood response had been the things of which dreams were made and now I was experiencing them for my own and on my own.
Five weeks later, we drew bloods. I could deal with the results: PCR 95,000, CD4s 60. We knew there would be a learning curve for the body. It takes a period of time to find your own levels again, especially after ten years of pharmaceuticals. Basically, I wanted to continue this tact until there was a significant change.
Some other observations. Eating becomes an entirely new experience. You may have a sudden craving for liver and onions! Give in and give your body what it requested. It knows by sight and memory what is in what food and what it stands to gain by eating it. That is why cooking your own meals is great for this work. Your body actually begins reacting in the grocery store as you buy raw products. When you order a salad in a restaurant, you have no idea, other than color, what is going in it and subsequently into your body. Buy the ingredients in the produce section and suddenly you think how nice it would be to have some yellow squash and grated carrots in with your greens and tomatoes. You just got a signal. You listened. Your body's chemistry factory just got some basics to synthesize some good stuff. It might be used for muscle, for bone or for the immune system. Bottom line, you have what you need to do the full job. A note on eating out. The beginning of a time-out is definitely not the time to eat your way through a Zagat's Top 100 restaurants. You need some consistency in food preparation and ingredients. If you eat out, be consistent and go to places you like. When it comes to food ingestion, knowledge is definitely power. Listen to the needs of your body. Be good to yourself. You deserve the best.
Things were going well and I felt great, but when the viral load spiked to over 750,000 and CD4's went to 52 in late September, we huddled to assess and make a decision. This is not an unusual occurrence. In other cases, viral breakthrough occurred in anywhere from a few days to a few weeks.
I called time-in on September 22, 1998. Duration of time-out: 11 weeks. Successful: Yes.
When to call your first time-in . . .
And I emphasize "first" here. We were by no means throwing in the towel. This is not about failing but merely a strategic shift of tactics and moving to a more passive/receptive role for my body and letting a drug regimen do the dirty work with the virus. Again, the virus doesn't know the source of what's being dumped on it. Taking a time-out and calling a time-in is keeping the virus guessing and, therefore, adding a very powerful option in the war chest that wasn't there before, namely, my own body. It just has to be used prudently and responsibly. In various observed instances, those taking several time outs had increasingly longer spans of time before renewed viral activity. The body seems to be more actively engaged in the HIV war than when totally dependent on HAART. Those taking more than two time-outs have stabilized for periods of 6 to 21 months. Self-reliance is regained slowly. Correspondingly, reliance on drugs is lessened.
In this first time-in, we reacted imaginatively. We had to since no previous combination still worked and I had been on virtually everything. Working on the theory of totally confusing the opponent, we concocted a really big cocktail consisting of Norvir, Fortovase, Zerit, Hydroxyurea, Viramune and Videx plus the Bactrim, Cytovene, testosterone and vitamins. Blasting my system after flying solo was a bit of a kick in the pants, both emotionally and physically. I was back to the frustration of "what to eat and when to eat it" thinking and vowed to do really, really well and work towards being on my own again within the next year or so. I have always been an optimist having endured lyme disease, meningitis, crypto, CMV colitis, recurring rectal cancer, eye surgery and my own share of meds-induced and self-induced mood swings. After a very successful time-out, I am even more optimistic. I know that under the proper circumstances, my body can and will react. I also know that it will not react without my guidance, feeding and love. We have an inherent capacity to heal ourselves, even if it means living healthy with a chronic condition.
The reaction to the new cocktail was a viral load drop and a moderate boost in CD4's. I've maintained a PCR range of 3,000 -- 31,000 and CD4 range of 60 -- 80. And I feel good. For the time being, the drugs are playing lead with me as a strong back-up -- a good game of two-on-one. Undetectable is a goal for many people. After ten years, I am less interested in an individual marker, important though it be, than in my overall state of being.
So what if I had to call a time-in? So what, indeed. I'm different now. Dealing with the virus can become a passive activity after so many years of drug regimen reliance, dependency even. After my time-out, I re-learned what it is to contribute actively again, not just with my mind, but with my body as a creative being capable of turning food into self-protecting medicine -- an alchemy all its own! Now the game has a back-up player that will be kept in shape. You can no longer be totally dependent on doctors and drugs to engage this invader. This experience fortified me and gave me a new resolve. I re-learned what a formidable force of nature we are capable of being. So, use the resources at hand. Rest. Build yourself up. Never abdicate responsibility and watchfulness again. You're a team now and you have to be ready when, not if, the game plan calls for another time-out. A big part of this and any game is the psychological advantage. If you decide to call a time-out, give it everything you have. Your heart and soul have to be in it for your body to be in it. You have to love and be loved, trust and be trusted and live as if every thing you do depends on it, because it does. And, when the time is right, get in the game and play. It's hard work, but it's worth it and you feel so alive!
This article was provided by Test Positive Aware Network. It is a part of the publication Positively Aware. Visit TPAN's website to find out more about their activities, publications and services.