Neuropathy & HIV
Why neuropathy with HIV?
How is it treated?
Other options or alternatives
BLOG (help for the community)
What is neuropathy?
"You'll have to learn to live with it"
Can we approach it differently?
Site in Dutch
you’ve learned that you’re HIV positive. You’ve learned to live with the facts (difficult enough) and are possibly one of the
more fortunate ones who can take their meds daily and lead a relatively normal life.
On the other hand, you may already have had problems
with secondary infections, or side effects, from either drugs or the virus itself and are finding that living with HIV is anything
but the ‘one pill a day covers all’ fallacy.
thing’s for sure, the last thing you’ll be hoping for is yet another problem; especially
one for which there isn’t a cure and may develop into something very painful and debilitating. That’s the sort of confrontation that
neuropathy can bring.
key words here are, ‘can’ and ‘may’, because neuropathy is a condition that ranges from tingling or loss
of feeling in a single toe, to serious pain and invalidity but its seriousness varies and progresses at a different rate for every
individual. Yet almost all statistics on the subject, suggest that in the Netherlands alone, there are approximately 400,000 patients
who have polyneuropathy to a lesser or greater degree. Two to eight percent of all adults have symptoms or signs of polyneuropathy
and the older you are, the greater the chance of developing neurological damage.
These statistics are by no means all HIV patients.
Neuropathy can emerge in cancer patients who have undergone chemotherapy; diabetes patients and people who have had physical
traumas and therefore the vast majority of neuropathy sufferers in the Netherlands are not HIV patients. However, it is estimated
that 30%+ of HIV patients will develop neuropathic symptoms and that works out on current estimates at 5,500 to 6,500 people which
is a truly staggering figure when you see how little media attention is given to it!
you can prove anything with statistics
and at the moment, relatively few HIV patients go on to develop serious neuropathy to the point of invalidity but HIV is a relatively
young disease and the longer people survive, the more chance they have of developing long-term conditions such as neuropathy. Time
will tell how widespread this problem will prove to be.
What is indisputable, is that if you are suffering from neuropathic pain in
your feet, legs or hands, or have little or no feeling in the same organs and need to watch how you walk and what you touch; or if
it is already affecting secondary functions such as urination, erectile function, breathing and so on, you won’t be interested in
statistics, you’ll just want someone to do something about it.
If only it were so simple!
Unfortunately, finding the cause of the
neuropathy, whether it’s caused by the virus itself, or medication, is extremely difficult and that’s without mentioning how difficult
it is to measure! Via tests on the central nervous system and the patterns of signals to the brain, signs of neuropathic damage can
be seen but more often than not, the tests show little in comparison to the extent of the symptoms and a proper diagnosis often depends
on the alertness of your doctor.
Far too often you’re told:
“That’s neuropathy; you’ll have to learn to live with it I’m afraid.”
And fighting to be taken seriously when busy doctors depend more and more on concrete evidence, only adds to your problems.
is designed to fill in some of the gaps in knowledge and background information so that we can make considered choices and ask the
right questions of our medical practitioners. It will attempt to look at both conventional and alternative treatments all which may
help but probably not cure and will provide links to other websites, which give more extensive information.
It is specifically aimed
at HIV patients but of course not exclusively. Neuropathy is neuropathy and can affect a broad range of people.
is one of those conditions that can drive you to distraction is a very important first step because the frustrations associated with
neuropathy are aggravating for both doctor and patient alike. In the Netherlands, there is a fair amount of support for neuropathy-suffering,
diabetes patients and also those recovering from chemo treatments but almost nothing for HIV patients. HIV patients can also go to
general sites dealing with those other problems – the facts are the same for everyone but as we all know, HIV patients have to deal
with more than just neuropathy and hopefully on this site, ideas can be shared via the Blog
because as every neuropathy patient knows,
all tips are helpful and sometimes just knowing that you’re not the only one feeling this way, helps enormously.
The information on this site is not intended or implied to be a substitute for professional medical advice, diagnosis or treatment. All content, including text, graphics, images and information, contained on or available through this website is for general information purposes only. Use of this site should in no way replace the consultation of a skilled professional. Never disregard professional medical advice or delay seeking medical treatment because of something you have read on or accessed through this website. We are not responsible or liable for any advice, course of treatment, diagnosis or any other information, services or products that you obtain through this website
Link to Blog Post
This site contains basic information regarding Neuropathy in combination with HIV. However, on the Blog (see Menu) you will find much more background information, articles about treatment, hints, tips and the experiences of other people.