This article by David Evans originally appeared on the CATIE website here.

Une version française est disponible ici. 

Before starting HIV medication, flight attendant Terry Wong never had a problem with jet lag or sleeping. “I could sleep just about anywhere anytime,” he recalls. “If I was tired and there was a bed, I would pass out and be snoring in minutes.” Diagnosed with HIV 15 years ago, Terry’s health took a nosedive seven years later—his weight dropped from 175 to 109 pounds and his CD4 count plummeted to zero. He was hospitalized for a week and started HIV treatment immediately. The meds saved his life but when combined with flying, they made getting some shut-eye a thing of the past.

Once on treatment, Terry started to gain weight and his health steadily improved, allowing him to return to work shortly afterwards. That’s when the insomnia hit: “When you’re switching time zones regularly, juggling your sleep and medication schedule without missing a dose becomes very complicated.” At first, he took his meds with lunch when in Vancouver. That meant that from his regular destination, Hong Kong, he had to take them at 3 am. He would call the hotel front desk to order a wakeup call and room service for that time, so he could take his pills with food. This threw his whole sleep schedule into a state of disarray. “My sleep was terrible,” he says. “I couldn’t sleep at all. It was the darkest period of my life.” In addition to the headaches and diarrhea he experienced as side effects from the medication, Terry constantly felt groggy, irritable, weak and depressed. After several years of this, he suffered a nervous breakdown.

Like Terry, many people living with HIV experience sleep problems. These can occur at any stage of HIV infection. Upwards of 75 percent of people report sleep issues on a regular basis. Some have difficulty falling asleep, some have trouble staying asleep (due to poor-quality sleep or frequent nightmares) and others wake up too early. Then there are people, like Jasmine, who have the misfortune of experiencing many or all of the above.

For years, when Jasmine went to bed at night she found herself wide awake, staring at the clock for hours on end. “If I fall asleep now,” she would calculate, “I’ll get only five hours of sleep…now only four hours…”—a vicious circle of insomnia and anxiety. Once she finally nodded off, she had problems staying asleep and achieving a deep sleep. As a result, she awoke each morning feeling sluggish. “It was very frustrating because it took a long time to get my engine up and running, ready to start the day.” When she started working night shifts, the problem only got worse. “When I’m sleep-deprived, I’m not as quick with my thinking or speech. I’m off my game and have to push myself to get stuff done.” 

Key to quality of life

Sleep is vital to our health and well-being: It can help regulate our hormones, reduce stress, manage our weight and improve immune function. As many of us know all too well, a lack of sleep can impair our memory, affect our ability to focus, deprive us of energy and leave us more susceptible to infection. Over time, this can lead to depression and anxiety, which can make it even harder to sleep.

Poor sleep can also make it more challenging to adhere to a pill-taking schedule—something that is crucial for successful HIV treatment. Dr. Julio Montaner, director of the BC Centre for Excellence in HIV/AIDS, stresses the importance of identifying sleep disturbances caused by HIV treatment early: “It is my job to be proactive and monitor for potential side effects. The more I can support people’s HIV treatment and help them be free of side effects, the more they are likely to be able to adhere to their medication regimen. Patients should be encouraged to bring up issues early as opposed to suffering in silence.”

Getting to the root of the problem

Identifying the nature of a sleep problem and figuring out what’s behind it is step number one, best done in conversation with a knowledgeable doctor or nurse. For people with HIV, the root cause tends to be one or some combination of the following:

• HIV itself – HIV-infected cells in the brain, which produce neurotoxins and chemical signals that may impair the sleep of some people.
• medications – such as efavirenz (Sustiva, also found in Atripla) used to treat HIV, interferon used to treat hepatitis C and other drugs prescribed for HIV-related illnesses.
• mental health issues – such as depression and anxiety.
• alcohol and drug use – heavy drinking or using drugs, especially stimulants such as cocaine, speed and ecstasy. 

Other causes of sleep problems can include changing hormone levels (for example, high or low levels of thyroid hormone, changes in estrogen levels during menopause and declining levels of free testosterone), calcium and/or vitamin B12 deficiencies, and infections (including a cold or flu).

After years of tossing and turning, Jasmine was determined to pinpoint the cause of her problems. The efavirenz she was taking as part of her HIV treatment was a possible culprit but not an obvious one because she had been taking the medication for years without side effects. The vivid dreams, nightmares and insomnia that some experience when taking this drug normally occur when people start the medication and tend to diminish or go away with time. But when Jasmine switched HIV drugs, it was confirmed: “My sleep was much better within days. It was definitely one of the things that had been causing me problems.” Working nights was another—but more about that later. 

How sleep works

When we sleep, we alternate between periods of non-rapid eye movement (NREM) and rapid eye movement (REM). One cycle takes about 90 minutes to complete and typically consists of five stages. Stage 1 is a drowsy sleep that usually lasts five to 10 minutes. During stage 2, our muscle activity diminishes and body temperature drops as we lose consciousness. Stages 3 and 4 are characterized by a deep, restorative sleep when the growth hormone responsible for cellular regeneration and muscle development is released. Stage 5 is REM sleep: Our eyes move back and forth rapidly and dreaming occurs as a result of increased brain activity.

People’s sleep needs vary, but most of us need seven to nine hours per night. This is known as “sleep architecture”—the total time asleep and the duration of NREM and REM periods. A good night’s sleep depends on the right balance between these different stages. Various factors, such as light, stimulants and poor sleep hygiene, can disrupt this balance. The goal for insomniacs is to restore this balance.

Strategiezzz…

Finding the solution that’s right for you might not happen overnight, but persistence and trying different strategies with the support of a knowledgeable doctor can go a long way. Here are some suggestions:

Stay away from the light! Light at night is one reason why many people don’t get enough sleep. Our circadian rhythms respond to the light and dark around us. Derived from the Latin words circa and diem, meaning “around a day,” the term describes our sleep/wake pattern, hormone release, body temperature and other bodily functions over a 24-hour period. In the past, people would wake up with the sun and go to bed with the moon, but the lightbulb changed all that. Bathed in artificial light long after the sun has set, many of us find our patterns out of sync with our body’s biological clock. And our sleep suffers from it. (Research suggests that it may also contribute to cancer, diabetes, heart disease and obesity.)

In the absence of light, our bodies release the hormone melatonin, which helps us get to sleep. When we are exposed to light, the release of melatonin is suppressed and makes sleep more difficult. Any kind of light has this effect, but the “blue light” emitted from electronic devices makes it particularly easy to disregard the body’s readiness for sleep. That is why it is important to sleep in total darkness. The best way to achieve this is with a specialized window covering that blocks outside light (a “blackout blind”), but a sleep mask is effective as well. It is also important to eliminate all sources of light in the bedroom, including all blinking lights or display screens, by turning them off, taping over them or removing them altogether.

Cut back on caffeine. Caffeine is the world’s most consumed psychoactive (mind-altering) drug and can be found in coffee, tea, soda, energy drinks and chocolate. Coffee is the most popular choice, with 65% of Canadians drinking an average of 2.8 cups per day. With its ability to boost energy, increase alertness and improve mood, it is a simple solution for a quick pick-me-up. Unfortunately, it can also disrupt sleep patterns. A central nervous system stimulant, caffeine increases the heart rate, core temperature and blood pressure, which, in turn, can increase the time needed to get to sleep, decrease sleep duration and limit your time spent in deep sleep.

Caffeine has a half-life of five hours—that’s how long it takes to metabolize half the amount circulating in your system. So if you drank a 12-oz coffee containing 260 mg of caffeine at 8 am, there would be 33 mg of caffeine left in your system by 11 pm, which is more than enough to disrupt sleep.

Want to sleep better? Here are some caffeine tips:

1. Limit your consumption after 10 am.
2. Reduce your overall intake—withdrawal symptoms like headaches can occur within 48 hours after you stop and can last two to nine days. If this happens, you’re on the right track!
3. Decaf does not mean caffeine-free—that same coffee still has 20 mg of caffeine. 

Check your meds and supplements. Review with your doctor all the medications and supplements you’re taking to determine if any of them could be to blame. Dr. Montaner points out that it’s essential to find the medication regimen best suited for each individual—one that is highly effective and can be taken long-term without disrupting daily activities. “Antiretroviral therapy is a lifelong proposition,” he says. “This is a marriage that has to work.”

Some cough and cold medicines, Gravol, antihistamines and other over-the-counter remedies are used to help people sleep; however, these can exacerbate underlying sleep problems and, when used over time, can lead to anxiety and depression.

Get your vitamins and minerals. If you have a calcium or vitamin B12 deficiency, taking a B-complex vitamin along with calcium and magnesium supplements can help your muscles relax.

Seek peace of mind. If an underlying emotional issue is keeping you awake, seeing a psychologist, counsellor or other health professional can help with depression, anxiety and other issues. A healthy support system and meditation, yoga or acupuncture can also help you rest easier.

Avoid sleeping pills. Sleeping pills offer a short-term solution for some people, but using them over the long-term can create dependency, negatively impact sleep architecture and make you feel drowsy the next day.

You are getting sleepy... A bedtime routine is essential for quality rest. We know its value for children, so why do so few adults have one? A consistent bedtime routine, which ideally starts 60 minutes before hitting the hay, helps you prepare for sleep by giving your day closure, quieting your mind and relaxing your body. A few pointers:

1. Turn off all electronics.
2. Dim the lights to start the release of melatonin.
3. Listen to soft music.
4. Set the temperature in your bedroom between 16°C and 20°C and make sure the room is well ventilated.
5. Have a hot bath. The rapid drop in body temperature that occurs when you get out will help you fall asleep.
6. Spend time reading, stretching or meditating.
7. Try some deep breathing in bed: Inhale for five seconds, hold for two seconds, exhale for five seconds. Repeat until asleep.

When Jasmine gets home from her night shift, around 3 am, she says it’s not as easy for her to “do the whole wind down/relaxation thing, the way a person who works regular hours would.” Instead, she finds that putting on a pair of blue-light-blocking glasses for two to three hours before bed helps; in fact, she swears by it. She starts wearing them toward the end of her shift and doesn’t remove them until she’s in bed with the lights off. She also makes a point of exercising (cross-training, kick-boxing, roller-blading or biking) during the day, which helps with her sleep. Although working nights isn’t easy, her modified regimen of anti-HIV drugs combined with these lifestyle changes has helped.

As for Terry, after years of trial and error, he now has a roster of strategies that have turned his formerly sleepless nights into long, uninterrupted deep sleeps. He tweaked his medication schedule (he now takes his meds at 7 or 8 pm in BC and at 9 or 10 pm in Asia) so that he no longer needs to call for room service in the middle of the night. He consulted with a dietitian who recommended light meals (nothing greasy) before a flight to reduce jet lag. When travelling, he routinely orders hotel turndown service, to make sure his room is completely dark at bedtime (he also tapes the curtains to the wall to make extra sure that no light comes through when day breaks). Regular Chinese acupressure massages and use of the hotel steam rooms or a bath help him relax before bed. Emotionally, he is now faring much better. When asked how he sleeps, he says unequivocally, “Like a baby.”

About the author: For 23 years, David Evans woke up feeling the same way he did when he went to bed. Desperate for answers, he did his own research, met with specialists and completed an overnight sleep study. Blood tests turned up nothing. Meds for sleep, anxiety, depression and daytime drowsiness produced more side effects than benefits. His relationships and finances were a mess and he had difficulty holding down a job. He became isolated and considered suicide as he longed for a state of non-existence.

Fast-forward to today: David’s sleep is under control and he is leading an energetic life. He no longer needs caffeine, naps are a rarity and he takes no sleep medication. Since transforming his own life, he now dedicates his time to helping others sleep soundly. He has delivered the workshop “Better than Counting Sheep” at Positive Living BC and Vancouver Friends for Life Society. For more info, visit www.sleepstudent.com

Question:What does your body and the New York City sewer system have in common?

A) Lots of rats running around the place living the good life.

B) Chewing gum, candy wrappers and all the stuff from storm drains strewn all over.

C) Bacteria, bacteria and more bacteria.

D) Zombies plotting their strategy take over the land of the living

Unless you are unusual, worry not about the zombies folks, the correct answer is bacteria and lots of it.  No don’t step away from the computer and drink some toilet bowl cleaner, this is good news.

Your body is host to billions and billions of bacteria, what doctors call intestinal flora. As the Definitive Guide to Alternative Medicine  poetically puts it, think about your body as a rainforest, (minus the parrots and monkeys, let's hope) a delicate ecosystem where these kinds of bacteria live and thrive in magical balance.  

TAKE CARE WHEN TAKING ANTIBIOTICS

Magical, that is, until the presence of external forces throws the bacterial balance off kilter. Food poisoning will tip the bacterial apple cart but the most common threat to this gentle ecosystem  are antibiotics, though steroids and oral contraceptives also do their damage to those good bacteria too.

Now don't get me wrong. Antibiotics represent a miracle in health  care. Many infections, diseasesand illnesses (at least for those of us in developed nations) no longer pose the mortal danger of years past because of them.

Yet overuse of antibiotics has created a situation where mutant viruses resist antibiotic treatment, and even relatively simple ailments require antibiotic treatment thousands of times stronger than was needed 30 or 40 years ago. So if your doctor writes antibiotic prescriptions faster than Manhattan meter maids write parking tickets, ask questions.  

PROBIOTICS ARE A GUT'S BEST FRIEND

While some of my friends consider me a paranoid pill popper I take probiotics daily. Probiotic supplements contain a variety of several of the most common and healthy bacteria in your gut and support your good old and sometimes overworked immune system. While many like myself believe supplements are the best way to replenish the intestinal flora and keep it healthy, yogurt and other fermented foods are also beneficial.

If you’re not going to take a supplement as part of your daily regimen when antibiotics are necessary make sure to take a probiotic supplement.  Be sure to read the directions on the label as many brands are best taken on an empty stomach to allow those healthy bugs the chance to reach your gut without stomach acids killing them off en route to their final destination in your GI tract.

As mentioned, cultured yogurt is also a great way to keep the bad guys from taking over the intestinal neighborhood. But some of the best known brands, like Activia, are loaded with sugar and far more expensive than many natural brands found in health food stores and the natural section of your supermarket. 

BALANCING ACT

When antibiotics or other factors disturb the intestinal bacteria an unhealthy balance is created allowing opportunistic bacteria and yeasts – the bad guys in the jungle – to take over the proverbial rainforest and flourish while the good bacteria disappears. 

This problem affects both men and women but the most commonly understood form of it is vaginal yeast infections. In some HIV-positive individuals thrush, an overgrowth of yeast in the mouth, is also found. 

In addition to prescription and over the counter antifungals there are a wide variety of herbal and homeopathic remedies available too.  Many herabl products contain combinations of garlic, pau d’arco (a Brazilian herb), black walnut and other immune supporting nutrients.  Homeopathic formulae are available in oral and topical forms as are all-natural suppositories for yeast infections.

Of course diet can upset the bacterial balance too. Eating too many simple carbohydrates, lots of sugar and fermented foods like beer and yeast-risen breads can exacerbate imbalances.

Of course anyone reading this doesn’t need someone wagging their online finger like an overbearing Mom, but don’t forget that eating whole grains, fresh fruit and vegetables will support your body’s ability to deal with all kinds of stress (perhaps with the exception of online dating) immunological and otherwise.  

And what the heck, since I’m acting like your mother, don’t forget that regular supplementation with a good multiple vitamin, vitamins C and other nutrients can keep your body strong even during those times when the bad guys are running amok in the jungle.

Check out nutritionist Lark Lands' website for more information on why supplementation is especially important for people with HIV.  As she notes both HIV infection and the impact of long-term treatment create a variety of nutrient deficiencies. Supplementation can in Lands' view, increase the body’s immune response, improve the efficacy of RX treatment and minimize the side-effects of these drugs. 

The above article is not intended as a substitute for medical advice and is for informational purposes only.  The author has provided web links as added resources for information but does not endorse products and/or services  found on these pages.   

Some of the writing in this column was first published by this author in the now defunct website Fidget.com.

‘Knowledge is power only if man knows what facts not to bother with.’

Robert Staughton Lynd

How much interest do you take in what you’re swallowing every day? Okay, wrong article: stop sniggering at the back of the class!

No seriously, do we know exactly what’s in the medications and supplements that we take and do we know what they do to our body and exactly how they affect our health? Of course we don’t and nobody reasonably expects you to. However, we do tend to bury our heads, ostrich-like, in the sand and blindly accept whatever we’re prescribed without having any idea what sort of risks and side effects are involved. Even with innocent sounding things like supplements and vitamins, we throw them down our throats in daily rituals because they sound good and should do us good but do we really know if that’s true?

On top of all that, we take recreational things like cigarettes, alcohol, sexual performance enhancers and anything else that will keep us up all night with the in-crowd. A hundred years ago the human body had never been exposed to such a cocktail of chemicals but of course more people died from disease and arguably had far less fun.

Speaking from personal experience; when I moved from one city to the other my HIV details somehow got lost along the way. I didn’t find this out until later, when I started wondering why certain combinations of drugs weren’t working for long and why my HIV-specialist was experimenting his little heart out. I casually mentioned that I shouldn’t be on one particular drug because I had been found to be resistant to it in my last town. He knew nothing about my resistance history but because the viral load wasn’t anywhere near high enough to measure it again, we had to go on until the right combo was found. Needless to say I was more than a little pissed that important details could be lost but had no option but to work with him. That’s the reason why I’ve had six antiretroviral combinations over the years but it did persuade me that from that point on, I was going to leave nothing to chance and keep a careful eye on what was prescribed for me.

I was still given things that did me harm (Videx and Kivexa for instance that brought rampant neuropathy with them as a freebie) but at least I quickly found out why. When the specialist put me on Truvada as part of a combination for the third time, after my kidneys had started showing alarming figures the second time; I was able to stamp my foot and ask him politely if this was wise. I’ve successfully been on a double-boosted regime for some time now (instead of the normal triple therapy) but when my blood pressure started soaring through the roof and my cholesterol figures were way too high, I was able to produce details of the right studies that showed that this was a result of the drugs and not a louche lifestyle (honest to god) and from that point on, the specialist knew that I wasn’t going to let anything more slip by without me knowing the risks.

The neuropathy was largely dealt with by neurologists and the circus started all over again. I was put on drugs with nasty side effects but again, because I’d done my research, I was able to recognize the problem, change the drugs and get the best possible pain relief for me. Much to his visible irritation, I’ve  unfortunately had to prove the neurologist wrong on several occasions since by producing up to date evidence as to why this that or the other just didn’t work. It sounds as though I was deliberately aiming to trip the doctors up but that absolutely wasn’t the case. I realized early on that they’re just human; they have hundreds, if not thousands of patients to deal with; they’re under immense pressure from time constraints, patient numbers and their hospital administrators and mistakes can be made.

The point is that most people don’t question their doctors; it’s just not done. They were brought up to respect the medical profession as some sort of untouchable divine force. That has changed and has to change. It’s the age of the internet network interaction and patients have access to possibly more information than the doctors themselves have time to read. The old adage that you should never believe what you read on the Net and other doctors’ standbys such as ‘a little knowledge is a dangerous thing’, just aren’t pertinent anymore.

To their credit, doctors are beginning to realize this and medical training schools lay much more emphasis on the concept of a patient/doctor partnership where knowledge can come from a variety of sources. It’s logical really; if you only have ten minutes for your doctor’s appointment, you won’t achieve much if the doctor has to explain your disease and the drugs he or she prescribe to you in detail in that time. That’s why, you walk away with a prescription but with little idea of what it’s going to do for you.

Medicine packaging includes lengthy pamphlets issued by the drug companies but they are designed to cover every option and their asses in case of law suits, so you will be faced by an encyclopedia of possible side effects which may worry you unduly and are too confusing to take in. Little wonder that most people do as they’re told and take the drugs according to doctor’s orders. If it goes wrong later, then that’s a problem for another day.

There are real benefits to doing your own research before the doctor’s appointment:

• You can find out why you have a problem, what the usual or possible cause is and what’s usually done to fix it.
• You can then approach the doctor with a certain amount of background knowledge and providing you don’t stuff it down their throats, or come across as arrogant, that will be appreciated because it saves so much time.
•  Most of the time, if you’ve established a personal rapport with your doctor, he or she will appreciate that actually, you’re taking a load off their shoulders. They can correct inaccurate assumptions but they won’t have to start from square one and the treatment will go ahead much quicker.
• You’ll be surprised how much the doctor then begins to respect you and your limited knowledge and the more research you do beforehand, the more it becomes a real partnership which makes the most of appointment times.

If you also bear in mind that mistakes can be made and resign yourself to the fact that shit happens and it’s no use flying into a hissy-fit about it, you’ll achieve health improvement much more quickly and what’s more be psychologically much more at ease with the process.

The same applies to the things we take which are largely outside the doctor’s control and that means, vitamins, supplements and many alternative therapies. Because we generally have to pay for these ourselves, you would think that we would be much more discerning about what we actually take and whether we’re actually just pissing our money away because things aren’t being absorbed properly. Of all the treatments meant to improve our health, vitamins and supplements are the most prone to advertising chicanery and the hard sell.

It started in the first decade of HIV/AIDS, when people were dying because the official treatments couldn’t save their lives. People grasped at any straws that were flying about in the wind and bought vitamins, herbal concoctions and supplements out of desperation. Rumors that this, that or the other, was a wonder supplement spread like wild fire and many people were taking 20 or 30 extra pills a day on top of whatever their doctors had prescribed. Some may have helped, others not but the point is that for us, the supplement industry boomed and continues to this day. It’s happened throughout history; the biggest money makers in the middle ages were the quacks who roamed around selling ‘cures’ for the plague to the desperate.

Now many supplements and vitamins can help you enormously if taken the right way but it’s possible that we are taking far too many things which aren’t doing us any good because we feel we should, or we’ve read the latest article about them, or because we daren’t stop in case the unquantifiable benefits disappear. In this way, many people still take masses of vitamins and supplements which build up and are rarely reduced.

We need to take responsibility for our own actions and again, the internet is an invaluable source of information. Try to steer away from commercial sites promoting their own products – they just want your cash - and read trusted sites which will tell you how to make the best of vitamins and supplements without wasting your money. You can also ask your HIV specialist or home doctor to test you for vitamin deficiencies but also other things like testosterone and cholesterol. In this way, if you’re results show that you’re already self-sufficient in those things, you don’t need to supplement. Many people living with HIV are deficient in certain vitamins but it’s always worth confirming that by a simple test. After that, do your research and base your purchasing decisions on the information you’ve found. It’s also advisable never to rely on one source for information; always get it corroborated by one or two other reliable sources.

Exactly the same applies to alternative therapies. Many people living with the complications of HIV, plus other conditions, try one or more alternative therapies to see if they help. There’s a feeling that if you’re avoiding chemicals in some way that alternative treatments are somehow better for you. If there’s a therapy (for instance, massage, acupuncture, aromatherapy, yoga and countless others) that fits your bill and genuinely helps then of course that is probably better than ingesting pills. However, although you may feel that you know what you’re doing, checking it out with your doctor first may not be such a bad idea. There are pitfalls and traps on the alternative therapy circuit too. Countless clinics will make exaggerated claims to be able to help, or even ‘cure’ your condition but it’s worth remembering that these are private businesses that are out to make money and your interests may not come first.

It’s always wise to check out therapists to see if a) they’re qualified in the field (and not just a vague, printed qualification from an unknown university, in a frame on the wall) and b) what their track record is like. Again, the internet and social media are excellent sources of information but even there, unscrupulous operators can log in on forums under a pseudonym and make wild claims of how brilliant their product is. If you’re going to give out your hard earned money, it must be worthwhile doing your homework first – there are so many shysters out there who are only interested in your bank balance and not your health.

So the point of this article is not to lecture people about the decisions they make but to encourage people living with HIV to be a little more responsible for their own treatment, whatever form that may take. It’s the age of rapid information exchange and although not all information is trustworthy, there are enough serious HIV sites to provide you with all you need to know about living with the virus and its complications. The medical profession has never been under such pressure from all sides and the rise of aggression in the waiting rooms and hospital departments show that patients are becoming frustrated too.

However diligent a health professional may be, he or she doesn’t really know you and how your body is reacting to medication or treatment. Mistakes can be made and if we want the best possible help for our conditions we should really be prepared to take some of the responsibility and acquaint ourselves at least with the basic background information. In that way, we’re helping our doctors make better decisions because we can fill in the gaps that a ten minute consultation won’t allow. If you’re concerned that you have an unexpected problem and know that others have experienced the same things, you can take your evidence and point this out to your doctor, or be reassured that you’re not alone. You’ll be amazed at how much more seriously they will take you and how much more directed your treatment will become. Doctors rely on a lot of guesswork based on their own knowledge and experience but you can make their task so much easier in your own case by learning what’s normal and what’s abnormal for your body. This is how partnerships are made and how you can actually make your doctor your friend, if you approach it in the right way.

The medical profession is learning that the internet can be an ally and a useful tool; surely we can do the same; it’s in our own best interests.

HIV medications, doctor patient relationship, HIV knowledge, vitamins and supplements, alternative therapies

This article first appeared on the CATIE website here.

Une version française est disponible ici. 

Many AIDS service organizations (ASOs) in Canada are committed to the greater and more meaningful involvement of people living with HIV (GIPA and MIPA) and the empowerment of people living with HIV. One manifestation of this commitment is the proliferation of “capacity building” and “leadership” programs for people living with HIV.

While such programs play a critical role in building the self-esteem of people with HIV/AIDS (PHAs) and empowering them as community leaders, many PHAs seem to have hit a “glass ceiling” in capacity-building initiatives. Many have completed all of the leadership programs available to them yet express a desire to continue to learn and grow through the guidance of those who are willing to share their experience and expertise. Such need for ongoing mentorship has also been identified through various research studies and community-planning think tanks.

In response to these emerging trends in capacity building, the Committee for Accessible AIDS Treatment (CAAT)—a Toronto-based coalition of HIV-affected individuals and organizations—took leadership to engage multiple community agency partners to create the Legacy project. The Legacy Project is CAAT’s initiative to build on existing capacity-building programs and provide PHAs with an ever-expanding network of mentors to facilitate a continuous, ongoing exchange of knowledge and resources.

The Legacy Project engages PHAs and their allies as “mentors.” Legacy builds structured mentorship relationships between mentors and PHA mentees to facilitate the establishing and working toward life goals, including more effective involvement in volunteerism, employment and/or pursuit of academic studies. The program begins with an orientation open to mentee candidates (PHAs who have completed “capacity building” trainings available in Toronto) and mentor candidates (PHAs and their allies who have transferable skills and experience). At the initial orientation, mentors and mentees are matched up to begin identifying goals and working out terms of how they will work together to achieve them.

Mentees who have achieved their initial goal may return to the Legacy Project to be partnered with a different mentor to work on another goal. In some cases, a mentee may be paired with multiple mentors to work on different goals simultaneously. Depending on their skills and experience, participants in the program who are PHAs may shift between roles as mentee and mentor or serve as mentor to a mentee while being mentored by someone else in the program.

For example, a mentee may participate in the program initially for guidance in exploring plans to pursue academic studies. While working with a mentor on that goal, she may be paired up with another mentor for guidance in working out how to balance her employment and community volunteerism priorities. This same mentee may have advanced artistic skills, meanwhile, which she may share by serving as mentor to another participant in the program looking to explore that discipline.  

PHA graduates of the program are also invited to return to participate as co-facilitators, thereby increasing the sense of agency promoted by the program. Whenever possible, opportunities for internships are created with partner agencies to provide placement for program participants.

The Legacy Project has established a broad network of mentors and mentees to engage in ongoing community learning and sharing. In addition to the initial orientation session and meetings of mentor/mentee pairs, the Legacy Project operates additional meetings on an ongoing basis to bring together participants in a workshop-style setting; these meetings build and sustain the sense of community among participants and encourage the ongoing exchange and sharing of lived experience, knowledge and information. These “reflective practice sessions” are opportunities for Legacy participants to reflect and address emerging issues in their mentoring relationships, learn further skills, share ideas for improving the program, and form additional connections with other mentors/mentees in the program.

Legacy also organizes group mentoring activities to bring participants with common interests together to further share skills and lessons learned in these areas. Group mentoring sessions have ranged from baking bread to learning about social media to sharing concerns on parenting.

The Legacy Project is one example of an innovative approach to creating a sense of community, building capacity and strengthening connections among PHAs. For more detailed information on programs that strive to bring PHAs together to share resources and build connections, see Sharing Together for Life and Weekend Wellness Retreats.

For more information on The Legacy Project, please contact:

Korata Komane, Legacy Project Coordinator

Committee for Accessible AIDS Treatment

c/o Regent Park Community Health Centre

465 Dundas Street East

Toronto, ON, M5A 2B2

 416-364-2261 ext 2318  Email: This email address is being protected from spambots. You need JavaScript enabled to view it.

(PositiveLite.com says: Please also refer to the Ontario AIDS Network's leadership training program, the  Positive Leadership Development Institute; details available here.)

As a worker in the field of HIV & AIDS, you often find yourself telling people what to do, or what not to do, and it’s not always true that you can follow your own advice. Others have written about the fact that when it comes to safe sex, workers are not perfect. After all, education is not the only factor that goes into sexual decision-making, and sexual health educators are real people with real lives (and sex lives, I might add). Similarly, I sometimes find myself making decisions around my own health care that may sharply contrast from the advice I might give someone living with HIV.

I live with a chronic auto-immune disease myself, and though it differs significantly from HIV in many ways, I can often relate to fears as well as the seemingly irrational choices that people living with HIV sometimes make about their health.

I will share an example that brought this to mind recently. Every year I have to attend a day-long check-up at a hospital in Toronto that involves stacks of paperwork (where I rate my pain levels), vial after vial of blood work, awkward poses and measurements in various positions, and hours of x-rays taken in compromising positions while naked under a gown. (If the x-rays go through skin, why do I have to be naked, is it just to make the patient feel extra humiliated?) The worst part of the visit is not trying to find reasonably priced parking near a Toronto hospital (impossible) or even wondering if the x-ray technologist guy is looking at my nipples through my gown. It’s actually the fears that accompany being forced to consider my life with a disease that is expected to worsen throughout my lifetime.

Here’s where the similarity to HIV kicks in. I kind of ignore my disease right now because at the moment it’s not impacting me so much.

I once went through a period of debilitating and nearly incapacitating pain, but since that phase has passed, I’ve moved and have been able to live a normal life again. My health gives me permission to ignore it, and if I’m brutally honest with myself, maybe ignore parts of my health care that are probably important to ongoing maintenance and management of the disease.  When I go to the hospital though, I come face to face with the reality of the disease. It makes me confront the steps that I should be taking but I’m not. It makes me wonder and worry about my future. It makes me think about the time in my life when my disease was active and I was really miserable. It makes me worry about whether I’ll have a hard time accessing affordable health insurance, even if my disease may not be a problem for me in the years ahead. My good health now makes me question the diagnosis in the first place, and wonder if perhaps it was a misdiagnosis; I contemplate whether I should ask the doctor. 

Today I cancelled my appointment. I used the excuse that I am taking a few weeks off for holidays and when I come back to work I won’t have the time to take another full-day off work. But part of the reason of why I cancelled it also had to do with the fact that I’ve been noticing more pain and more issues lately, and don’t want to go to the doctor when I feel this way. It’s much more encouraging to go when I’m doing well, and can fill out my pain charts more optimistically and score better on the measurements.  Last year my appointment went really well. I kind of want to wait to go to another appointment when the awkwardness and fear of the entire situation is offset by improvements in flexibility or pain levels.

Today I thought, “this is why people with HIV don’t go to their doctors appointments when their counts are low; this is why people disappear from the clinic when they’re not doing well.”

The irony is that when people don’t access our services, it sometimes means they could use our help more than ever, that they’re really struggling but don’t want to have to deal with the fear, shame or negative feelings that will be brought up by the visit.

My January appointment has been moved to mid-March.

“Pain is experienced by people and families not by nerve endings” Dame Cicely Saunders

A nightmare for some and a godsend for others; some people become addicted to opioids because opioids have become their recreational drug of choice, others because their pain symptoms are so severe that they have no choice. Either way, a problem has arisen which threatens social stability in whole communities, especially in North America and makes authorities unsure which way to turn.

You may see this as a far from my bed phenomenon but as I will explain later, many people living with HIV find themselves involved with opioids before they know it and have to live with the consequences of this sort of treatment simply because there is no better way of treating their pain.

First some statistics to highlight the scale of the problem:

• According to the US Institute of Addiction Medicine in 2007, 23 million people over the age of 12 needed treatment for substance abuse in the USA.
• Between 1992 and 2003, abuse of prescription drugs increased by 140%.
• Given that Americans represent 5% of the world’s population; 80% of the world’s supply of opioids and 99% of the global availability of hydrocodone is used within the US borders.
• Because opioids are legally available as prescription drugs, this availability has been matched by a 63% increase in opioid-related deaths between 1999 and 2004.
• Many studies have shown that abuse or misuse of these drugs averages out at between 20% and 58% of people who have been prescribed opioids for chronic pain.
• In 2005 it was established that almost 2 million Americans were opioid dependent but more alarmingly...
• Approximately 4.7 million teenagers and adults used opioids for non-medical purposes and...
• Over 32 million Americans reported having used them for non-medical purposes at least once in their lives. 

Shocked yet? Actually these statistics were assembled before the current explosion in opioid addiction and abuse that has recently begun to hit the headlines across the western world. The figures, five years later in 2012 will be far higher and the number of deaths and serious health problems resulting from both opioid prescription and the black market, will now be alarmingly high. It’s a problem that is almost unrecognised in its expanse and a social time bomb that we still seem unwilling to acknowledge.

Still, why should this be relevant to people living with HIV? The answer is that many people with HIV are also chronic pain patients; something that is often overlooked when reading about the negative aspects of being positive.

According to the Well Project, many people with the virus have to manage chronic pain symptoms for the following reasons:

• Peripheral neuropathy (between 25% and 40% of people with HIV) – nerve damage with over 100 causes, amongst which are the virus itself, diabetes, cancer treatment, toxic medications and even high alcohol consumption.
• Abdominal Pain (26%...) – as a side effect of some HIV drugs; parasitical infection or bacteria; problems and irritability in the intestines, including irritable bowel syndrome; inflammation of the pancreas caused by some HIV meds; too much fat in the blood; or drinking; bladder or urinary tract infections and in women, uterus, cervix and ovary conditions.
• Headaches and migraines (17%...) - from mild to severe brought about by a variety of causes including certain HIV drugs
• Joint, muscle and bone pain (5%...) – can also be from mild to severe and be HIV-related to forms of arthritis, rheumatism; bone disease and bone density problems. It can also occur when using drugs for high cholesterol and especially hepatitis.
• Herpes pain (5%...) – many people may see herpes as par for the course when you’re sexually active but a cold sore, or sore on your genitals represents its mildest form. If you’ve ever had shingles, you’ll know that the pain can be excruciating and as the herpes virus can frequently re-occur, it’s something that can plague your life if you have HIV.
• Skin problems and rashes – side effects of certain HIV medications or other drugs.
• Chest pain caused by lung infections such as TB, bacterial pneumonia, or PCP pneumonia.
• Mouth pain caused by ulcers or fungal infections.
• Pain due to cancer in all its forms.

"the good news is that the explosion in opioid use since then has not been paralleled in the HIV population" 

According to pain.com in 2005, 8% of HIV individuals were on long-term opioids for severe pain, which was more than double the non-HIV population. However, the good news is that the explosion in opioid use since then has not been paralleled in the HIV population. This is possibly because opioids are prescribed for valid reasons to HIV patients and there is less incidence of recreational opioid use which has worsened the problem in the general population.

Before everybody writes in to say that they’re fine and have never had a problem with the virus or the medication, please be reassured that you are some of the lucky ones. Of course only a certain percentage of people living with HIV will suffer chronic pain in one form or another but a significant proportion of those will eventually have no option but to start taking opioids as the only painkillers that will help. It’s not a choice; some pain is so severe that it just doesn’t react to over the counter medications, or medications meant for other diseases. Opioids, if used properly, are a very effective solution. The problem is that they are not always used properly as the statistics above clearly show.

Recreational use of opioids could also be said to be the result of psychological ‘pain’; fulfilling a need to escape from the harsh edges in life (it could also be simply the well-known search for a kick that has got out of hand). However, recreational drug use and the reasons for its popularity are really subjects for other articles. What we need to know to arm both ourselves and people we know with knowledge, is that it gets out of hand when people don’t realise how quickly and easily they can become seriously addicted.

So, with the facts out of the way, it’s perhaps useful to illustrate the problem by giving some examples of what opioid abuse has been doing to people.

Canadian issues

A BBC article told how Oxycontin (Oxycodone) has been responsible for devastating certain groups within the Canadian First Nation communities.

"The spiral of social decay then becomes speedy and almost inevitable and in the end becomes a criminal rather than a social problem."

Just three hours flying time north of Toronto is the small town of Fort Hope, where it is estimated that 80% of the working age population is problematically involved with Oxycontin abuse. A local artist, Dave Waswa, carves eagles from moose antlers and instead of selling them to art dealers and galleries, sells them to feed his addiction. One carving will earn him 5 or 6 Oxycontin pills and in Fort Hope itself, an 80mg tablet can cost up to $600. If ever a town was ironically named! Even more ironic is that in cities like Toronto, you can buy Oxycontin pills for roughly $40 each and the suspicion that drug dealers are targeting remote communities seems to be borne out. The result is that people will do anything to get their drugs, including selling themselves and their possessions. The spiral of social decay then becomes speedy and almost inevitable and in the end becomes a criminal rather than a social problem.

"It makes everything go away," Mr Waswa says of the prescription-only painkiller. "You don't have no feeling. You just want to stay high… but I'm tired of it. I lost a buddy last summer. He was 38 years old and took an overdose, went into a coma and never got up."

As an ex user of Oxycontin myself (prescribed for neuropathic pain) I know what it’s like. It’s said to be as potent as heroin and more addictive. For people who use it as prescribed, it is taken orally and absorbed into the body over twelve hours. The problem is that huge numbers of people are abusing it by crushing and smoking or snorting it – the high is then pretty much instant and the addictive effects kick in almost as fast.

You shouldn’t be tempted into making racist assumptions here. The First Nation communities are just one example of many, spread across society from the leafy suburbs of the big cities, to isolated communities where life is already under pressure. The BBC article is worth reading but you can find equally powerful case-studies across North America, in every type of social class and structure. Just like any other addiction problem, local circumstances may make the problem easier to find but it’s everywhere, irrespective of social background. The Methadone Strategy Working Group in Ontario states clearly... “Opioid dependence is a health and social crisis in Ontario that crosses all social and economic strata.” ...and that applies to every country or state facing these problems.

"They’re working on various alternatives but many people end up taking levels of Oxycontin for instance that virtually guarantee addiction."

The manufacturers of Oxycontin (Purdue Pharma) have recently stopped distributing the current format of the drug both in Canada and in many states in the US. It has been replaced by a version that is far more difficult to tamper with (OxyNeo) and only works on a time-release basis, thus bringing it back to its original purpose. It’s important to note however that even time released opioids are potentially addictive. The very nature of the way they work means that eventually you need more of the same drug to maintain the same level of pain control! They’re working on various alternatives but many people end up taking levels of Oxycontin for instance that virtually guarantee addiction. Many doctors don’t appreciate how easy a process this is. When I realised what it was doing to me, my specialist told me to come down from 80mg a day for instance, to nothing within a week! Six months later, I was down to 5mg a day and a couple of months later finally came off it altogether but it was a struggle and telling people that weaning off the drug is a short term process is nonsense and guaranteed to add to people’s insecurities.

Oxycontin was introduced as a wonder drug in the late 90s and was pitched as a less addictive option than other opioids. Cancer patients especially saw this as a huge breakthrough in dealing with their pain but in fact Oxycodone turned out to be twice as strong as morphine. Doctors were at first unaware of its addictive strength and many still are but fortunately, local and state medical authorities across North America  are waking up to the problem and removing it in its current form from the market; with the FDA in the States  leading the way.The problem is that the more controllable alternatives are not yet available everywhere, leading to addicts heading onto the black market and underground dealers. These alternatives are basically exactly the same as Oxycontin or other opioids but can’t be crushed or liquefied. Unfortunately, this is a typical governmental approach to all sorts of addiction: pass a law, remove the drug but don’t have realistic alternatives in place so that addicts can wean themselves off slowly and with guidance. This often leads to further misery for the addict and a rapid growth of an underground market.

It’s important to remember that Oxycontin is by no means the only opioid that has these troubling side effects. Morphine family members, including amongst others, Tramadol, Dilaudid and Percodan all have their own stories of widespread addiction after delivering relief from chronic pain.

A paper produced by the Ontario Addiction Treatment Centres  makes for very interesting and alarming reading, the chief points of which are as follows:

• The main causes of drug-attributable deaths are suicide, overdose and AIDS contracted from sharing needles—all of which are strongly associated with injection drug use.
• Each year, about 1% of opioid users will die from an overdose.
• In 1995, opiate poisoning was the cause of about 160 out of 804 drug-related deaths in Canada, and opioids accounted for 11% of the 6,947 hospitalizations attributed to illicit drug use. (This does not include the hospitalizations for inappropriate use of prescription opioids.)
•  People who are opioid dependent are also extremely vulnerable to life-threatening blood-borne diseases, such as HIV and hepatitis C. Between 1985 and 1999, the proportion of people in Ontario diagnosed with HIV through injection drug use rose from 0.45% to almost 15%. In 1999 alone, injection drug users accounted for 24% of new HIV infections in Northern Ontario and 15% of new HIV infections in Ottawa. As of 2000, 63% of newly diagnosed cases of hepatitis C are related to injection drug use.
• In 1999/2000, drug possession or drug trafficking accounted for 7% of new admissions to correctional institutions (2110 people), 5% of new admissions to probation (1,809 people) and 16% of new admissions to conditional sentences (694 people). These figures do not include the number of people convicted of theft or other crimes to support a drug habit.
• The Ministry of Community and Social Services estimates that about 3% of users of the social assistance or welfare system have a history of drug dependency, which affects both their employability and their ability to maintain employment. 

It’s again important to remember that this paper was drafted some years ago and since then the opioid problem is said to have ‘exploded’, which if true, is a frightening thought. Whether the problem has really become so much greater since 2000 is open to discussion. The truth may be closer to the fact that the media in western countries has finally cottoned on to the extent of the problem and has devoted column inches to lurid and sensationalist headlines which make it look as though the opioid addiction problem is explosive and threatening to the social fabric.

So what is the ‘real and present danger’ to us as people living with HIV, its co-morbidities and any resulting extra health problems? If your pain does not respond well enough to analgesics and other drugs (anti-depressants, anti-convulsants and other drugs meant to interact with nerve signals to the brain), you may be advised to move onto opioids of one sort or another. This shouldn’t alarm you too much, despite the content of this article. Opioids work really well, if they are kept under control and you are consistently monitored by your doctor or specialist. He or she should make every effort to ensure that you don’t become addicted whilst still getting the most relief out of the pain killing effects. The problems often begin if the doctor writes you a prescription and then leaves you to get on with it. You should always discuss any potential side effects and problems before beginning with opioids. You should get his or her reassurance that you will be carefully monitored and that the right level of opioid medication will be found with as little risk of addiction as possible. Anything less is really unacceptable but the reality is often harder than this advice suggests. If you’re given a ten minute appointment, it may be difficult to discuss things in any detail because the doctors are under so much time pressure. However, in this case, you can be sure that a little time spent establishing ground rules now will save much more of the doctor’s time later if it goes wrong. If you want to get off the drugs at a later date, make sure that the close monitoring continues: weaning yourself off opiates is no casual matter and isn’t easy; you’re going to need support. In your own interests, make sure you get it.

"Addiction also involves a physical, psychological and behavioural need for an opioid and can dominate a person’s life."

The American Institute of Addiction Medicine points out that the World Health Organisation recognises opioid addiction as a brain disease. Addiction also involves a physical, psychological and behavioural need for an opioid and can dominate a person’s life. They also say that opioids prescribed as pain killers are similar to heroin and can be equally addictive. Addicts will go to any lengths to satisfy their need, including shopping around the various doctor’s surgeries and clinics; stealing from friends, family and work and using the internet to order them from whatever suspect source. The withdrawal symptoms of coming off opioids should never be underestimated – it’s always possible but it’s going to be hard – you’ll probably need help, guidance and understanding. Never try to go cold turkey with opioids; you don’t need to; just get the right advice. Some people however, will continue their addiction rather than face the social stigma of admitting their problem and seeking help. 

The medical authorities and pharmaceutical companies are finally reacting to the problem and working on ways to reduce the potential for pill abuse by developing safer alternatives with longer delayed release effects, to try to cut out the possibilities for instant highs. They are also busy studying the best ways of directing and re-directing pain signals to the brain by creating more refined opiate derivatives but this will take time, especially as each new product has to go through hoops before it is officially approved. 

In the meantime, millions of people suffer from substance use and abuse and many more are affected by someone else’s problems. The best we can all individually do is keep our eyes open in our own circles. If you know someone who has been prescribed opioids for chronic pain, tactfully try to let them know that you will be there for them during any difficulties and watch out for signs of a personal struggle with the drugs. Of course this is true for all substance abuse; from over-eating via alcohol and smoking, to heavier medication abuse. If for whatever reason you personally take opioids for recreational purposes, I can’t judge but please make yourself aware of the facts and the dangers and if you feel that control is slipping away and the drugs are taking over, at least tell someone you trust. You really don’t want to become another drug abuse statistic, especially if you are also living with HIV; life is surely difficult enough! 

"I know I have a history of being open to temptation and may have a ‘suggestible’ personality."

I don’t want to come over as alarmist; the statistics surely speak for themselves and opioids are powerful analgesics that when properly and sensibly prescribed and administered, can bring much needed relief from physical pain and emotional suffering. However, they aren’t aspirins and need to be treated with the greatest of respect. If you take them because your pain is unbearable, you have to see them as a positive treatment; you may not have any choice but knowledge is power and being aware of what they can do if not wisely used, is half the battle against potential problems. If you’re honest with yourself, you may become more aware by looking at other things in your life. Do you find it difficult to resist smoking, drinking, eating, for instance? I know I have a history of being open to temptation and may have a ‘suggestible’ personality. Perversely, that knowledge helped me stop smoking, drinking and certainly helped when coming off Oxycontin. Knowing that you are susceptible to mild addictive behaviour may keep that thought in the back of your mind when dealing with opioids. Never be afraid to pester your doctors for help – they can’t read your mind.

Finally, the following by Jane Ballantyne and Steven LaForge from the official journal of the American Pain Society sums up how difficult the whole subject is.

“When patients are maintained on opioids for the treatment of pain, there is currently no satisfactory means of distinguishing true addiction from problematic behaviors caused by a variety of factors other than addiction. Unfortunately, advances in understanding the neurobiological foundation of addiction have not been matched by any improvement in physicians’ ability to recognize and diagnose the condition. There is no single diagnostic marker of addiction, no definitive change on brain imaging and as yet no genetic markers to provide a reliable prognosis of risk. When it comes to iatrogenic opioid addiction, the clinician is faced with even greater difficulty: the behaviors encountered do not resemble those outlined in the criteria for addiction to illicit drugs...

...One of the great difficulties of quantifying, recognizing, and treating iatrogenic opioid addiction is the subjective nature of the judgment on whether behaviors have crossed an ill-defined boundary between problematic opioid use and addiction. This judgment then becomes dependent on the reporting person’s experience, prejudices, and knowledge.”                                            

Ballantyne JC, LaForge KS. Opioid dependence and addiction during opioid treatment of chronic pain. Pain. 2007;129(3):235-255

Opioid dependency is clearly a huge problem, partly because of the dichotomy of its causes. How can you balance the medical need for perfectly legal and effective drugs, with the potential for side effects and addiction? Addicts may become addicted because the opioids have overcome the original medical need and prescription parameters, or because they’re seeking a buzz or a high? The end result for both can be addiction, even if the original motives were polls apart. The lines are blurred and nothing is just black and white but there is no doubt that it’s another underestimated problem of the modern age, which is having wide ranging effects of certain groups in society. The authorities are, as is often the case, reacting instinctively by using sledge hammers to crack nuts by locally banning this and that and criminalising doctors and chemists, who have to turn legitimate patients away. It is complex and we have to hope that the pharmaceutical companies will ignore their cash cows and quickly come up with safer but equally effective alternatives. Let us hope that people living with HIV are amongst the most knowledgeable and level headed in society and that the problem within our community will be constrained, even if it can’t be removed.

 “Only the patient knows how intense and frequent a pain is – a pain is what the patient says it is.” Palliative caregiver

Further information:

http://pain-topics.org/opioid_rx/risk.php

http://www.whocancerpain.wisc.edu/?q=node/78

http://opioids911.org/