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Dave R.

HIV, Neuropathy and More: Avoiding Becoming a Nervous Wreck


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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The Health Cost Crisis? Who Cares?!
February 8, 2012

There's no denying it; the post-war baby boomers are getting old but there's one thing baby boomers have always loved and that is getting on a soapbox and having a good old moan (that's as near as you'll get to an apology in advance, from this particular grumpy old man!). However, aging has meant different things to different tribes within that group.

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The Supplement Syndrome: "I'm Not Sure It's Helping but It May Get Worse If I Stop!"
February 1, 2012

The advent of HIV in our lives coincided with the beginning of a western obsession with alternative self-help and self-medication. Not that HIV was responsible for that but people with HIV were desperate to find ways of improving and extending their lives; many alternative therapies were adopted and in many cases maintained to this day. However, the biggest boom was in the use of supplements to our diets to improve general health and hopefully boost our immune systems. The rest of the population was on board because the idea of taking a few pills beat dieting and exercise hands down, and the western world at that time just wanted to look like Lee Majors and Jane Fonda. For some reason, it didn't click with the general couch-potato population that supplements were exactly that and no substitute for healthy eating and exercise.

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The Self-Worth Analysis, or How Neuropathy Can Steal Your Social Self
January 20, 2012

Allow me to imagine a scenario: You've been there before remember ... with HIV. The day before your diagnosis you were more or less a fully-functioning part of society, even if that wasn't particularly the aim and the day after ... you weren't. That's not to say that you ceased to exist; your role just changed that's all. It's a two-way process; society looks at you differently and you see society as something outside yourself. For many people, it's the first time they've been forced to examine their position in the world and for many people it's a real shock.

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The Lemming Compulsion, or How People With Neuropathy and HIV Will Grab at Straws
January 10, 2012

A short post on my other blog started me thinking. How many people deliberately avoid acting responsibly, to take their minds off their medical problems? Is it one of those things that nobody talks about because everybody does it to one extent or the other? Is there an iceberg, of which the study at this link is only the tip?

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How Neuropathy Is Currently Treated
January 3, 2012

It is probably best to be brutally honest here: neuropathy is essentially nerve damage and as of November 2011 (the writing of this piece), there is no cure for nerve damage and nerves where the cells are dead cannot be repaired. Anyone who claims to be able to "cure" your neuropathy is exaggerating at best! That said, many of the worst aspects of neuropathy, and that means the symptoms, can be helped or alleviated, so that life becomes more bearable.

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Why Do People With HIV Suffer From Neuropathy?
December 22, 2011

It really does seem profoundly unfair: you've contracted HIV and have begun treatment; you may have sailed through to this point without too many problems, or you may have already been to hell and back dealing with secondary infections and psychological problems. Then, after you've been on the meds for some time, again you may have noticed no significant difference in your life, or may have suffered every side effect on the list. Eventually, for most people the situation tends to settle down and you learn to live with HIV as an irritating but constant companion (apologies to those for whom life never seems to get better). Then, seemingly out of nowhere, you begin to feel strange, new and unpleasant symptoms. After some time these are diagnosed as neuropathy (peripheral or otherwise) and your life is changed forever. For some people that can lead to annoying but ultimately not very serious symptoms and for others, the end result is invalidity and a life of pain.

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See Also
Neurological Complications of AIDS Fact Sheet
More on Neuropathy

BLOG:
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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