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Dave R.

HIV, Neuropathy and More: Avoiding Becoming a Nervous Wreck


She Worked Hard for the Money: Donna Summer, 1948 - 2012
May 17, 2012

For those who partied in the '70s and '80s, the name Donna Summer evokes nostalgic memories of hot discos throbbing to the heat generated by 'I Feel Love', 'Love to Love You Baby', 'Hot Stuff' and Last Dance', to name but a few. This woman put sex and disco together and instigated a musical genre, which belonged to gays and was only later adopted by the world at large. She was the musical 'love-child' of Georgio Moroder and Pete Bellotte and was the voice that fronted a new techno-synth and electronic sound that was distinctly European in flavour and first broke there too in the early '70s. The icing on the 'Macarthur Park' cake went into meltdown however, when in 1983, La Summer opened her newly converted Christian mouth and made some remarks, which instantly alienated the gay community and thus her strongest fan base. Whether the things she said were misquoted or not, suspicions were aroused which refuse to go away.

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"Dear Dave ...": The Virus Writes Back!
April 29, 2012

Are you surprised? Seriously! How can you be surprised? You knew all about me before we met and let me remind you ... you knew what to expect! How many friends had I killed, with you watching me do it and yet still determined to get into bed with me eventually? Oh please, don't tell me you never meant for this to happen! You pretty much knew how to avoid it, or am I wrong?

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Crimes and Generations, or How We Throw Our Elders Out With the Bathwater
April 19, 2012

Societies across the world will be facing many challenging situations over the coming years but one of the greatest may well turn out to be one of the most shameful; the hidden and unrecognized, wide scale abuse of our elderly. What does it mean now and what will it mean in the future for many people in the HIV generations that have been saved from an early death but may be condemned to a miserable last few decades?

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Can I Get A Witness! Authentic Voices Tell the Story of Neuropathy
April 11, 2012

In 1931, the French medical missionary Dr. Albert Schweitzer wrote: "Pain is a more terrible lord of mankind than even death itself."

If you have headaches, or toothaches, most people will be able to identify with you and sympathise. They can't feel your pain at that moment but they've had headaches and toothaches before, so can imagine exactly how you're feeling. Similarly, if you've fallen and broken bones, or cut yourself and are bleeding, most people will be able to empathise with you.

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Attack of the Killer Couches, or Why People With HIV and Neuropathy Need to Get Off Our Backsides! Part Two
March 30, 2012

Okay, all that information about exercise provided in Part One probably leaves you feeling somewhat frustrated if your movement is already limited by pain and disability. So what can we do for ourselves? We've been pushed reluctantly into our chairs by neuropathy and have learned that activity can be painful but there must surely be things we can do. Unfortunately, immobility is a huge problem for neuropathy patients. It can shrink your muscles even further and cause them to lose flexibility. Your metabolism will decrease, which means again, less energy and more fat gain.

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Attack of the Killer Couches, or Why People With HIV and Neuropathy Need to Get Off Our Backsides! Part One
March 29, 2012

Nobody with neuropathic pain, or tingling, or numbness wants to hear it. Neither do those people with HIV who are exhausted from the pressures, both physical and psychological, of living with HIV and its medications. These are people who on some days are so tired they can't move one foot in front of another and they just don't want to be told to go forth and exercise. Yet they have to; we must! It's a question of how much longer we want to live.

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The Vitamin Evaluations, or How to Reduce Your Urine Costs! Part Two
March 17, 2012

The following two sections are probably the ones of most interest to most people and for that I apologize for the amount of information you had to wade through in Part One to get to this point. Although we want to know when to take these supplements and which daily dose is the right one; I always want to know what it is I take and what it's supposed to do. This is not so easy when researching HIV medications but is much easier with vitamins.

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The Vitamin Evaluations, or How to Reduce Your Urine Costs! Part One
March 16, 2012

As a confirmed supplement taker, it struck me some time ago that I should really make more effort to understand what I'm taking and why and whether I'm doing it in such a way that my body gains maximum benefit. I always suspected that swallowing a handful of vitamins and minerals with the orange juice every morning was possibly swallowing a whole lot of advertising propaganda at the same time. Yet still I did it (and forgot the orange juice too) because as someone with both HIV and neuropathy, I felt that my immune system was continually under attack and therefore needed boosting with supplements to enable it to fight off the unknown and unexpected.

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FDA Adds More Heat to the Capsaicin Debate
February 25, 2012

It's a series of events that has become all too familiar to people living with HIV over the years. A promising drug or treatment emerges, either for HIV or an associated illness; the news spreads like wildfire across the Net and people become excited at the prospect of a breakthrough and finally getting some relief. However, the news that something's in the pipeline is just the beginning. Trials need to be organized that can take years to complete and then the drug has to go through assessments akin to the Inquisition before it can be approved.

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I Hate to Be a Kicker, or How to Get Neuropathy Into the Glossies?
February 17, 2012

Apparently the figure of twenty million Americans alone with neuropathy isn't enough to make it a Twitter Trending Topic, or a Facebook phenomenon. That's maybe understandable when you think of the average age of social networkers but the fact remains that, one way or another we have to get neuropathy taken seriously as a major health problem. In an ideal world you'd expect the doctors, medical authorities and drug companies to take the initiative. After all, with those statistics, there's surely money and reputations to be made but apart from a few serious neurology and diabetes conferences (where solutions are genuinely looked for), there's nothing in the mainstream media that makes Joe the plumber sit up and take notice. Why are we missing the target?

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See Also
Neurological Complications of AIDS Fact Sheet
More on Neuropathy
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HIV, Neuropathy and More: Avoiding Becoming a Nervous Wreck


Dave R.

Dave R.

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.

Arriving on TheBody.com, originally, was 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 daily Blog and a website where practical information, hints, tips and experiences for patients could be gathered together in one place.

However, I was also given the chance to write about other aspects of living with HIV and have now contributed more articles about those than about neuropathy. That said, neuropathy remains my 'core subject' although one which unfortunately dominates both my life and that of many other HIV-positive people.

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.

I also have my own personal website and write for PositiveLite.com.


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