SmartAirMedia YouTube ChannelSubscribe to our RSS feed

Living with HIV

May17

The HIV-Positive Sex Worker

Written by // Guest Authors - Revolving Door Categories // Current Affairs, Living with HIV, Revolving Door, Opinion Pieces, Guest Authors

Guest Alex Garner from FrontiersLA.com asks “What exactly are the dynamics at play if one is an HIV-positive escort?”

The HIV-Positive Sex Worker

This article by Alex Garner, Frontiers’ Editor-at-Large first appeared on the website of FrontiersLA.com here.

I’m sure you’ve seen the sensational headlines, “HIV-Positive Prostitutes Arrested” or, “Greek Panic over HIV-Positive Prostitutes.” 17 female prostitutes in Greece were arrested for having HIV. It’s being covered as a scintillating story full of drama and intrigue. It has all the makings of an 80s miniseries. All that is missing is Phoebe Cates asking, “Which one of you bitches is my mother?” The appropriate title could be, “Sex, Scandal and Stigma.”

The key word is stigma and unfortunately, this is not a TV movie, it’s real life. The rights of these women have been completed disregarded in order to further the narrative of the dangerous and diseased prostitute. Their names and photos were released to the media, in the style of America’s Most Wanted, and Health Minister Loverdos is using language like, “exploded bomb, “ which helps paint them as sinister immigrant prostitute terrorists.

There has been no indication that HIV transmission has occurred and even the Health Minister admits that assigning blame is a bit tricky. He said, “It's not all the fault of the illegally procured woman, it's 50 percent her fault and 50 percent that of the client, perhaps more because he is paying the money."

So as this scandal unfolds it will pull focus from the challenging conditions for those living with HIV and it will keep a frustrated population from focusing on an economic catastrophe.

This incident should provide us with an opportunity to think about what it means to be an HIV-positive prostitute. Here in Los Angeles, there are scores of gay men working as escorts. Many also work in the porn industry. They aren’t “dirty bombs of disease,” they are just gay guys making a buck off their ripped abs, bulging biceps and other ample bulges.

What exactly are the dynamics at play if one is an HIV-positive escort?

A few years ago, a contributing writer to The Infection Monologues in Seattle, wanted to include a story about how his character got infected from an escort. It was the classic example of relinquishing all responsibility and blaming it on the diseased professional. The question I posed to him is still relevant today- “what incentive does an escort have to be honest if he knows he will lose money?”

I don’t mean to say the escorts are all money hungry monsters. They are businessmen who are making a living. If they know that being honest about their HIV status means they will no longer be able to make a living then it’s reasonable to expect that they may not divulge that information.

I don’t believe that HIV-positive escorts are callous and intend to infect their clients so they can make a quick buck. I think it’s important to explore the complex dynamics of sex, money and power that are at play. 

When a man decides to hire an escort he usually has a sense of what he is into and what his boundaries are. He is paying for a service and he establishes the power dynamic. An escort often has their own boundaries but those boundaries might be flexible depending on how much money is being offered and how low their bank account might be.

The scenario could go something like this: A client calls an escort and asks him details about his services. The client says he intends to be very safe and use a condom. He then asks the escort if he is negative or positive. The escort says positive. The client thanks him for his honesty but decides to move onto another escort.

If this happens to the positive escort again, will he be just as honest? If the escort is undetectable and a condom is going to be used, it’s not out of the realm of possibility that the escort would lie so that he could make some money.

And what about the client who declined the services of the positive escort? Does he expect every other escort to be as honest? Was he asking because he might really be interested in sex without a condom?

The bottom line here is that sex work is very complicated. Whether they are immigrant prostitutes or Weho escorts, they are real, three-dimensional human beings. They are already working in an industry that is highly stigmatized and add to that a disease that is all about stigma and it makes for a difficult situation.  Not to mention, there are profound differences between the escort from Rentboy and the one on the street corner in front of Shakeys.

Depicting these people as akin to bomb toting terrorists only increases the fear and fuels the stigma. The solution is a sophisticated and nuanced discussion about sex work that acknowledges the rights and the humanity of the workers while understanding the complicated dynamics involved.

Alex Garner says: I invite you to follow me on Twitter and join me on Facebook.

 

May17

Spotlight on a survivor - Francisco Ibáñez-Carrasco

Written by // Bob Leahy - Contributing Editor Categories // Gay Men, OHTN OHTN/PositiveLite.com, Features and Interviews, Living with HIV, Population Specific , Bob Leahy

Bob Leahy interviews the dynamic new Director of Education and Training at the OHTN, a long term survivor with a history of succeeding.

Spotlight on a survivor - Francisco Ibáñez-Carrasco

You can’t help but like Francisco Ibáñez-Carrasco.  He is a handsome silvered-haired dynamo, a Latino through and through, who is enthusiastic about everything he touches, even about being alive.  Clearly Francisco loves life and that comes through in the interview which follows.

Not that his life has been an easy one.  Born in Chile forty-eight years ago, he was,  according to his 2011 profile in CATIE’s The Positive Side “raised by a poor, single mother who earned her living cleaning rich people’s houses. As a child he was molested by Catholic priests, and as a teenager he traded sex for cash. “I get along with people with an edge, with difficult lives,” he says, “because I see myself reflected in them.”"

Francisco came to Canada in 1985; within months he was diagnosed with HIV.  Says CATIE “Most of the friends he arrived with in Vancouver moved on to New York City, which was “kind of a gay Mecca in our imaginations,” he says. “We were all young gay men who didn’t know anything about AIDS. We all got infected and they all died. Some of them died of HIV-related complications; some of them died undocumented. So, yeah, there’s a trail of dead people behind me, whom I honour, of course, all the time.”"

Francisco himself was diagnosed with Kaposi’s  Sarcoma back then, its  spots covering most of his body. He saw first one and then a second partner die of AIDS-related complications. But like many others he was saved from the jaws of death by the protease inhibitors which surfaced in 1996.

Meanwhile he had been pursuing higher education at B.C.’s Simon Fraser University where he eventually earned his Ph. D in 1999 – one of the first Canadians with HIV to earn a doctoral degree. His focus since has been on research on HIV and rehabilitation and, latterly, in the training of new researchers in the field of HIV. Resident at the OHTN (Ontario HIV Treatment Network) in Toronto, he has been Program Manager of Universities Without Walls.  Just recently he has been appointed the OHTN’s Director of Education and Training.

As you’ll see, Francisco is a lively and engaging interview subject.  For this interview I asked him the questions off camera with those questions edited out, allowing Francisco’s responses to shine through.

Videography by Guy McLoughlin

Photo by Bob Leahy

May16

Always Let Your Conscience Be Your Guide

Written by // Positively Dating Categories // Gay Men, Dating, Lifestyle, Living with HIV, Population Specific , Positively Dating

Positively Dating on condoms, serosorting, parTy and play - and doing what feels right!

Always Let Your Conscience Be Your Guide

As I re-entered the world of singledom, after the South African, some things became disturbingly clear

I realized that I have a post break-up habit.  Some people get a drastic hair cut. Some people gain or even lose 15 lbs. For me, after a relationship ends I tend to become a true believer in free love.   During which I made good use of all of my gentleman’s socializing networks. I could be found chatting with guys at the gym, at work, at home.  I would even travel the length of Manhattan to partake in an extra long lunch break. Just to clarify, this was NOT my prior lunch date.  Within the midst of my newly rejuvenated spurt of free love, there were a couple observations that shocked and confused me. 

Way before the South African existed in my word, I chatted with this handsome Brooklyn Boy. We met on OkCupid and we tried to set up a really real date on a couple different occasions. Unfortunately it never really worked out, so we both just gave up. While on sowing my newly found wild oats, I came across the same Brooklyn Boy, on a slightly different website, Manhunt. We chatted again and this time we were determined finally to make our date happen. Since we were chatting on a site that had the byline of “Get on, Get off” I thought I should come clean with my status. He quickly became excited and he said, “So am I, now you can fuck me raw!” Clearly, I should’ve given him a different nickname with the initials B. B. I politely declined and then literally got off. 

There was another guy, who I chatted with for quite some time.  We talked about everyday random stuff and not just about a mutual love for our freedoms.  Finally, we decided to finally set up a time to meet. Again, because we didn’t meet on Manhunt and I wasn’t sure what his intentions were, I told him my status and lo-and-behold he said he was also poz. Ok, great. There should be no weirdness. Oh, was I wrong. I also told him that I always play safe and he proceeded to tell me that he never uses protection and he basically apologized saying that he hates “rubbers” and he would never have sex with someone who insisted on using them. 

I was baffled. I know I talk a lot about my disappointment and frustration with negative guys who turn me down because of my status, now I was turned down by a positive guy who didn’t date me because I always use a condom! I felt like I had just stepped into some bizzaro universe. 

Now, don’t get me wrong, I completely understand the allure of this particular practice, especially with another positive person.  But forgeting  the personal risk factors involved, I think people tend to forget that there are other STDs out there. I have a hard enough time expressing my status to a prospective date; imagine adding Chlamydia, Gonorrhea, Herpes, or Syphilis to the mix! 

Another thing that completely perplexed me was the amount of people that ask me if I "parTy". I am not that naïve that I am completely unaware of this practice and on prior occasions I have been asked if I "parTy and play". And I would be remiss not to mention I did try meth once. Luckily for me the only addictive substance my body will let me consume is chocolate.  But day after day, I found myself bombarded with that question, “Do you parTy?” No, “Hello.” No, “How are you?” Just “Do you parTy?”

I would respond: “Why yes I do! When my niece turned five, you should have seen me tearing up that Disney karaoke.” 

I love my oral fixations too much to give myself meth mouth and I love my penis way too much to swing it around at every Tom, Dick, and Harry without any protection. You can call me a fuddy-duddy, but I still head the advice given to me Mr. Jiminy Cricket and I always let my conscience by my guide.

May16

What Lies Ahead

Written by // Guest Authors - Revolving Door Categories // Gay Men, Activism, Revolving Door, Living with HIV, Population Specific , Guest Authors

Christopher Myron’s story : ” I know disclosing isn’t as easy for everyone, but I’d like to think my one voice will encourage others to come out, negative and positive, and talk about HIV. “

What Lies Ahead

Ever since I came out of the closet for the second time with my diagnosis I made a promise to myself that I would be vocal, to anyone who’d listen, about my life as a gay man and living with HIV.

Essentially, I had practice coming clean about situations in my younger years when I talked with friends and schoolmates about my adoption from a foster home in Colombia.  I thought nothing of it, but what always amazed me was how fascinated people were with my story.  As I grew older I realized it wasn’t so much my adoption that they were interested in hearing, rather the passion I exuded in my words.

It’s always great to get my listeners to laugh when I told them I was adopted and I happened to be on sale that week and went by the name, “Baby Number 5.”  Of course I was joking!  From there on I knew that I loved to make people laugh…even over a touchy subject like HIV.  I never stop talking about my beginning HIV story and where I am now, but recently I returned my energies back towards gay rights in our country - something I hadn’t cared much about since I began with HIV.  Now I advocate for both the rights of positive people and gay people. 

I’ve endlessly told my HIV story and spoke about my background on many websites, including my own blog site and in particularly, Robert Breining’s POZ I AM site where individuals recently diagnosed can find a safe haven.  Now that it’s been over two years since my diagnosis I’ve acquired the skill to summarize my limited experience (time-wise) with HIV in a couple of paragraphs. That way it leaves the dialogue open for people to reach out to me for further details.  

I was diagnosed January 21, 2010.  I went into a severe depression that only took a downward direction when I was told that it was in my best interests to start medications right away given my low T-cell count at the time.  I began my regimen March 27, 2010 and was declared undetectable with a growing T-cell count by June.  I was lucky and once I knew that there was nothing to worry about I disclosed my status to my parents one hot July evening at home.  Following that,  I went viral with a YouTube video that disclosed my status to friends, relatives, co-workers and strangers.  The video continues to get recognition and praise for the most part and can be found at the end of this post. 

My video skills have since improved, but I’ll never forget how nervous I was when I filmed it.  It took almost a whole day to get my words right.  One can probably pick up on the fact that I stuttered with my words, trying to get all my feelings out in ten minutes (I thought it would be my only video.)  Needless to say when it was published my Facebook page, my cell phone and email FLOODED with responses from all my connections of life.  They cried and admired, making sure I was okay and that I wasn’t dying.  Talking to everyone as if I was a doctor explaining how my HIV isn’t killing me, I quickly realized that I made a breakthrough with my words and began a stepping stone for people’s idea of HIV.  Sky was the limit for me from that point on.  This coming August that video will be two years old. 

So there you have it, my HIV history in a speedy nutshell.  I’m not one for living in the past as I have a mind to just look at the road ahead- bumps and smooth terrain alike- with a little more knowledge and experience under my belt. 

I’m at a place in my life where I meet people in bars or social events and I talk about my HIV like it’s an everyday thing - because it is, in retrospect.  I know disclosing isn’t as easy for everyone, but I’d like to think my one voice will encourage others to come out, negative and positive, and talk about HIV.  Besides, I’m tired of being a third class citizen - second because I’m homosexual and third for being an HIV positive homosexual. And don’t get me started on HIV-positive women in this country as my heart will always have a place for them. 

The reason I bring this up is because I’ve transitioned my HIV story from being recently diagnosed to living with HIV.  I’m stealing the “So What, Now What?” slogan.  I live in America where the news and media is lately saturated about our President’s support for gay marriage.  Sure, I’m happy to hear about his support, but I’m one of those people that want to see action.  After all it is an election year in our country and isn’t timing just everything?  What happens if one day my body’s virus takes a turn for the worse and my partner at the time is unable to see me in the hospital? 

With my “so what, now what” attitude and my HIV in a healthy check I reassembled my fight for gay rights that I put on the backburner since January 21, 2010.  I’m still hopeful that more and more of our states and provinces will approve equal rights for all.  This will be quite a year in our country with the election, the mass hysteria over gay rights and the International AIDS Conference being held this summer in Washington, D.C.  The President won’t be able to hide then when he’s asked why America has a waiting list for medications and treatment for even one  individual too many and what he plans to do about it.  

I can’t wait when a few decades down the road I’m writing the memoir of my life and I make jokes at the fact that I remember a world that opposed gay marriage and people feared HIV.  Those were the days.  However, that future I set will only be a reality if more people like me come out from the shadows and scream about their HIV.

May15

What is an ‘HIV Identity’, and should you have one?

Written by // Michael Bouldin Categories // Gay Men, Activism, Michael Bouldin , Living with HIV, Opinion Pieces, Population Specific

Michael Bouldin “You’ll have your own HIV identity when you own the disease, not the other way around. I really do believe that everyone can get there.”

What is an ‘HIV Identity’, and should you have one?

Like many HIVsters, I’ve made ample use of therapy; both personal and group, at times simultaneously. One might add that I am, or was, therapy-naïve – never saw much use in it, and this particular extravagance was more for the camaraderie and the drinks after it was done. In one such group session – here at Gay Men’s Health Crisis (GMHC) in New York City -- the facilitator (I believe that’s what they’re called, others go by ‘moderator’) mentioned a concept that had me spitting nails: the idea that one should develop said HIV identity. It would help us ‘get in touch’ with the supposed turmoil within.

Well, no, I said. I neither need nor want that. My identity doesn’t include an accidental disease, and I don’t do turmoil. I speak French, read books, cook, I’ve walked down Fifth Avenue in nothing but a pair of combat boots, Calvin Kleins and a big smile, am active in politics, write stuff people actually read, I’ve even met the President of the United States – the current, sane one, not that hot mess we had until three years ago. I’m a New York hipster, for crying out loud. That should suffice to establish a secure sense of self. And just who the fuck do you think you are anyway?

So, no, I don’t have any use for this particular bit of thera-blather, I said as nicely as I could. Which still, if memory serves, wasn’t all that nice. The way I was brought up – military family, you do the math – boys don’t have feelings to begin with. If you have a problem, you sit down and work on it. You certainly don’t talk about it with mom, or dad, or your friends, and if that problem resides below the waistline where the icky parts live, you’re definitely going to mind your manners and remember that polite company is wherever you happen to be. All very British, if you will, or German, rather, because that’s my actual background. If you know anything at all about that particular ethnic group, aside from their utter lack of humor, it’s that our ‘therapy’, such as it is and Freud be damned, consists of invading defenseless neighboring countries.

And all of that served me quite well, thank you very much, for a long time. Granted, being a slab of meat devoid of detectable emotion can cost you. Say, a stunning man you’re still in love with twenty years later and an ocean apart, the one you never told just how much you love him.

I find, however, that people who vigorously disclaim something – I tend to be one of those – do so for the simple reason that someone has struck very near a mark, and  continue thinking about and watching what goes on around them. And so I did. I watched those young kids, clearly terrified, walking into GMHC for probably the first time. I had a friend break down in tears over not having anyone to talk to about his status but me, not his family, not his other friends, no one in God’s creation. Just me. That other pretty young guy, maybe half my age and worth his weight in gold, crying on the street. Or that poor transgendered woman who had just had the stuffing kicked out of her by the ‘real’ women in the homeless shelter, with no idea where to go next. Just heartbreaking, and yes, I do have one. Somewhere.

I forget when it was, sometime two summers, I suppose, when the flip-side of the Anglo-Teutonic iciness came out; and that is, simply put, the idea that one has a duty to be there for others. The idea of duty is, I believe, one of the strongest moral forces in our world; it’s why we pay taxes and at least try not to break laws. Judaism has a very useful concept for that called ‘Tikkun Olam’, ‘Repair the World’ in Hebrew. The idea, once you strip it of all the extraneous religious verbiage, is simply this: that as human beings, we live in a society, and have a positive moral obligation to make it better for everyone. As in, stop talking, take action. So far, so good, and all emotional aloofness aside, I personally actually have a pretty good track record on that; leftwing activist and all.

I decided that my duty was to be as open about my HIV status – positive, in case you’re wondering – as I could be. That’s one reason why I write here, on Daily Kos, on Alternet, and probably more as this journey progresses. One other reason is, of course, that I like to hear myself talk, but my editors have learned to live with that, bless their hearts.

But talking alone isn’t action, is it, unless you calculate the value of being out and, God alone help us, maybe being a role model for some kids none of us may ever know. Stigma is still out there, it ruins lives, and it pisses me the fuck off.

I decided to cancel my therapy group just recently. It was getting tiresome anyway, and frankly, I’m not all that interested in the granular details of the sex life of strangers (unless I plan on being a part of it, but that’s a story for another day, and most certainly not applicable in that particular context). Instead, I joined ACT UP New York, the mothership, still around after all these years. And guess what? ACT UP still gets stuff done. Amazing, that, and I get to be a part of it.

So I guess that’s my HIV identity: I’m very much okay with everything, and so is everyone around me. I’ve done a few small things for other HIVsters, nothing to write home about, not yet at least. I’m healthy as a horse, my career is getting back on track, my relationship is solid, you get the idea. I’ve stepped out of the shadow of the disease. I’m in charge now, not some virus.

I suppose that’s the moral of the story and what my facilitator was talking about. You’ll have your own HIV identity when you own the disease, not the other way around. I really do believe that everyone can get there; and meanwhile, never shut up, raise hell, and if anyone tells you it can’t be done, laugh in their face. Because it can.

May12

What Is Neuropathy? A Growing Problem.

Written by // Guest Authors - Revolving Door Categories // Health, Living with HIV, Revolving Door, Guest Authors

Guest writer Dave R. is an expert on neuropathy because he suffers from it. In the first of a three part series, Dave explains how neuropathy is a growing problem amongst people with HIV.,

What Is Neuropathy? A Growing Problem.

Let's keep it simple here. If you've had neuropathy for some time, you'll already know what we're dealing with but if you're just beginning to encounter strange sensations in your feet or hands, or numbness which makes it feel like you've got wet sand in your socks when you walk, you may be wondering what on earth's happening to you. You may also be concerned that it's something that may happen to you in the future, or maybe already know a family member or friend with neuropathy and want to understand what's involved to be more supportive. 

Basically, neuropathy is nerve damage. You can equate it to an electrical short circuit, which causes a breakdown of normal service in the nervous system. It's a highly complex condition with many causes and equally many variations and although the symptoms are like no other disease, it can be very difficult to diagnose. Once diagnosed, a prognosis is almost impossible because its progress is dependent on your personal situation. It's another auto-immune disease, where in this case, the immune system more or less attacks the nervous system.

Our nervous system is made up of two parts: the central nervous system and the peripheral nervous system. The central nervous system comprises the brain and the spinal cord and the peripheral nervous system concerns the nerves which spread out from the central nervous system. Confused already? Hopefully not yet.

In general there are two types of neuropathy. If we're talking about damage to a single nerve, then we would call it mono-neuropathy; if several or more nerves are damaged then it is called poly-neuropathy. The peripheral nerves (extensions growing out of a nerve cell or neuron) are also called neurites and they can be compared to electricity cables because neurites also have an external insulating material called myelin. Myelin protects the neurites against both physical damage and electrical impulse damage to the tissue. Neuropathy occurs if the nerve cells or myelin are damaged or destroyed. That's why you can compare it to a domestic short circuit, which makes it easier to visualize.

Most people have one or another form of peripheral neuropathy: nerve damage in the longest nerve channels, furthest away from the brain and spinal cord. This is characterized by the well-known symptoms found in the extremities (the hands, arms, legs and feet) but can also be seen in the internal organs. The symptoms can vary, with amongst others, tingling or loss of feeling; a burning feeling (especially on the feet and hands); itching, chronic pain, or combinations of some or all of them.

Unfortunately, the potential problems don't end there.

The Nervous System

Neuropathy can also attack the so-called Autonomic Nervous System, a term for the part of the nervous system that works involuntarily -- we have no control over it. This system controls things like heartbeat, blood pressure, digestion, certain muscular and lung functions, liver and kidney operations, sexual activity and so on: to put it simply, things which work in the body without us being consciously aware of them.

If neuropathy begins to affect the autonomous nervous system, then a whole range of activities may cease to function normally. Blood pressure problems, (dizziness on standing upright); drying up of sweat, saliva and tear glands; urine retention (not being able to empty the bladder completely); impotence, constipation, stomach contents retention (not being able to clear the bowels); heart rhythm problems; breathing difficulties and so on.

Most people on the street have never heard of neuropathy and certainly most HIV-positive people are unaware that it's a real possibility in their lives; which is strange considering that is generally accepted that around twenty million Americans (and therefore a proportionate number in other countries in the world) suffer from neuropathy in one form or another. Most of them have neuropathy as a result of diabetes, or chemotherapy treatment, or alcoholism, or physical trauma, (up to a hundred causes in all) but the disease still remains relatively unknown; why?

As you know all publicity costs; and because there is no cure and therefore, no world-beating medication for the drug companies to compete over, there is no new money to be made, so few pharmaceutical companies are going to promote neuropathy as a cause. Instead, they boost their older pain killers, anti-depressants, or epilepsy drugs, which work for some people in suppressing the discomfort -- no cash to lose there. Apart from that, there are very few high-profile role models (Angela Lansbury and Johnny Cash are hardly likely to bring in the big bucks!) and the media doesn't find images of neuropathy patients to compare with the AIDS orphans in Africa.

No Outward Signs

That's another major problem for neuropathy campaigners: neuropathy is a disease which, if you stand still, doesn't usually have any outward signs: no rashes, lumps, or malformed limbs, or swelling, or wasting; you can look the picture of health and yet still be in agony from neuropathy. It can be a major issue convincing people, from doctors to family members and loved ones, that you've really got a problem. Little wonder that the anti-depressants are sometimes more useful for the depression resulting from the disease, than helping the symptoms!

The longer you live with the disease, the more you grow to understand what's happening to you but in the beginning, it's like sifting through mud trying to find answers and solutions. Many doctors will still just shrug their shoulders, sympathize and tell you that you'll just have to learn to live with it; which for a patient already living with HIV, is the most negative and depressing thing they could hear. Why don't doctors realize that?

The problem is that patients living with HIV need doctors who will look at their situation holistically because every side effect, medication, or virus-related problem is linked to another medical area. Luckily, most HIV specialists are fully aware of that and have become "Jacks of all trades" in the medical world. You don't just treat the virus HIV; you treat everything that comes with it and for some people that's like the contents of a small medical dictionary! Neuropathy, in whatever form, is the unexpected sniper that hits you just when you thought everything was settling down in your medical life. It doesn't come with the virus, or when you begin the drug regimes, but appears later, as a result of the medication, the virus itself, or a host of other reasons. It's a mean, life-changing disease that has different causes and is different for everyone and that's precisely what makes it so difficult to treat and why doctors are just as frustrated as we are.

That said; neuropathy doesn't affect everyone with HIV. Current estimates and statistics show that at least a third of HIV-positive people will encounter neuropathic problems but that means that two thirds won't! Still, one in three, or four is pretty significant and the longer people survive with HIV, the more cases of neuropathy (amongst other things) are appearing. Then, if you do have neuropathic symptoms, they may begin with as little as numbness in one toe ... and stay that way; or tingling in the feet and hands, combined with numbness and paradoxically, pain which eventually lead to muscle weakness and some form of permanent disability. It's just that sort of disease; it ranges from mild to wild, with everything in between. The doctors try to treat the symptoms with a variety of drugs and/or supplements and alternative therapies and what works for one person, doesn't work for another with exactly the same symptoms -- are you getting the picture? Unfortunately, however much the many symptoms can be helped or not, the disease itself is, in 2011, still incurable.

Don't Get Depressed!

This article is not meant to depress people but it is meant to be realistic. If you know what you're dealing with, then it's much easier to find a place for it in your life. Moreover, worst-case scenarios are just that: you will probably be able to find something to help your own neuropathy experience become more bearable. It may take a while, as you try this, that or the other treatment but most people will find some relief amongst the many options available. It's very important to learn as much as possible about your condition and if your doctor tells you there is nothing he or she can do, that may be strictly true in terms of curing the problem but that is never an acceptable approach in terms of living with the disease; change doctor and find someone who will support you in your efforts to control the worst aspects of neuropathy -- with a bit of luck, your HIV specialist may be the very person. Armed with facts, you can work with the medical specialists, rather than passively accept a one-sided relationship. However, most first-port-of-call doctors are not neurologists and may have a limited experience of neuropathy. Plus, busy as they are and under the burden of time restrictions, their very human instinct may be to usher you out as quickly as possible, to try to clear the day's backlog of patients. If you can save them some time by doing your own research beforehand and maybe setting your symptoms down on paper, you'll earn respect and establish a constructive treatment program much more quickly.

After all, you're already living with HIV; you deserve some acknowledgement for what you've already gone through but as Sir Francis Bacon said in 1597, "Knowledge is power."

Much more information about Neuropathy and HIV can be found on my website here and my blog here.

Dave also writes for The Body.com here, where this article first appeared

Bio: English but living since 1986 in Amsterdam, the Netherlands. HIV+ since 2004 and a neuropathy patient since 2007. I've seen quite a bit, done quite a bit and bought quite a few t-shirts if you know what I mean; but all that baggage makes me what I am today: a better person I believe, despite it all.

I'm here as the end result of getting neuropathy as a side effect of the medication, or the virus, or both. I found it such a vague disease and discovered very little information that wasn't commercially tinged, or scientifically impenetrable, so I decided to create a website and blog where practical information, hints, tips and experiences for patients could be gathered together in one place.

I'm not a doctor or qualified medical expert, just someone with neuropathy and HIV who has spent the last few years researching the illness and trying to create information sources for people who want to know more.

Next week Dave asks “Why Do People With HIV Suffer From Neuropathy?”

MarketPlace