The title quote was written by George Bernard Shaw in ‘Saint Joan’ in 1923 but if ever a saying is timeless it’s this one.

The reason I’m dragging it out of the cliché locker is because I feel I have to take issue with a couple of articles that have appeared on PositiveLite.com recently.  

They are IS HIV TRANSMISSION POSSIBLE WHEN VIRAL LOAD IN THE BLOOD IS UNDETECTABLE? from CATIE and INFECTIOUSNESS coming from Aidsmap.com

I respect the work that people in HIV organisations put in to the struggle to control the virus and I appreciate the time and effort put in by writers who do their best to provide us with information – we’d be in a sorry state without them. I also know the perils of one article writer criticising another but I genuinely mean no disrespect. These two articles are pretty representative of what you will find all over the net and therefore my problem is more with the genre than the individual articles themselves.

The CATIE article addresses a question which is in the back of everybody’s mind. It’s crucial, both for positive and negative sex partners. The title suggests that the question will be answered but unfortunately that’s anything but the case. The first paragraph sums up what viral load actually is but hardly gives hard and fast rules which we can hang our hats on. It talks about the viral load being measured in the bodily fluids of a positive person. Surely it’s not. It’s measured in the blood and only very rarely in semen, saliva etc.

“Research shows that successful HIV treatment can reduce the viral load to “undetectable” levels and this can reduce the risk of HIV transmission. However, HIV transmission may be possible when the viral load is undetectable…The risk of HIV transmission when taking antiretroviral treatment may increase if sexually transmitted infections (STIs) are present…This risk may also be higher for anal sex than for vaginal sex.”

What do they mean, ‘can’ and ‘may’? We’re thirty years into the history of the virus. We should be hearing ‘does’ and ‘will’, not bet-hedging to cover all possibilities!

The following is something we’re all very aware of but what does a statement like this actually tell us?

“Viral load tests used in Canada cannot detect HIV in the blood if there are less than 40–50 copies/ml. Therefore, an undetectable viral load means the amount of virus in the blood is too low to detect, it does not mean that there is no virus present.”

First of all, we know the testing procedures are still limited but surely we’re entitled to ask why? Secondly, what the hell are we supposed to take from such a statement? Getting everybody to undetectable status is the universal aim but is pretty pointless if we don’t know how much of the virus has escaped detection because the procedures are lacking. Of course ‘undetectable’ suggests ‘less infectious’ but thirty years into the disease and its treatment and we still don’t know whether that’s entirely true. Until other bodily fluids are routinely tested we’re no closer to an answer and even then, the virus may be hiding in bone marrow, organs and brain tissue. Testing every susceptible piece of the body may never be possible but telling us we’re undetectable but maybe still dangerous, tells us almost nothing; we deserve better.

Another pretty meaningless statement is:

“Research shows that a lower amount of virus in the blood is usually associated with a lower risk of transmitting HIV to others, and a higher viral load is associated with a higher risk.”

Duh! And by the way, what research? We probably all accept the truth of this statement but what research proves that? Far too often the words ‘Research shows…’ are thrown at us in the expectation that we’ll accept that as gospel. Very often research is so small-scale and out of date that it is barely relevant. It is wrong to assume that the reader can’t cope with references to the exact piece of research and it should be expected that research is looked at with a critical eye but very often, ‘research shows…’ will back up a multitude of assumptions.

CATIE quotes HPTN 052 research to back up theories that a lower viral load reduces risk but that research was conducted amongst tiny groups of sero-discordant heterosexual partners in Africa and Thailand. The research is ongoing but trials to measure the same risk reduction when it comes to homosexual, anal sex…well you can whistle for that one! A lot of people hang a lot of credence on HPTN 052 but for HIV+ gay people, it suggests absolutely nothing and proves even less. To be fair, the CATIE article does point this out and even questions the relevance of the research but still draws conclusions that say we can reasonably assume that the same applies to anal sex. Uhm sorry, no it doesn’t!

When a paragraph begins with:

“Successful antiretroviral treatment can lower the viral load in the blood and other bodily fluids to undetectable levels and this can reduce the risk of sexual HIV transmission...Antiretroviral treatment may be much less effective than 96% when these conditions are not met.”

You know that it means very little. We want to know that in the majority of cases, ‘it will’!

More woolly information follows:

“A higher level of HIV in the semen, vaginal fluid, and rectal fluid may increase the risk of transmission when the blood viral load is undetectable. However, it is unclear how often this happens and how significant it is in terms of HIV transmission. Research shows it may be more common if a person has an STI, but can also happen in the absence of STIs.”

There they are again: ‘may’ and ‘can’, plus a ‘research shows’ and an ‘unclear’. How exactly is this useful information? The fact is that the research in all areas of HIV is still shockingly lacking and in the meantime we have to put up with guesswork. That's not good enough in 2013. If there’s no more money for  extensive and indisputable research; or no plans are on the table; or government and scientific bodies are standing in the way; or moral objections are blocking funds it’s the responsibility of HIV sites and organisations to say so and tell their readers the truth. “We just don’t know and this is why we don’t know,” is far more acceptable than ‘cans and maybes’. At least then we know where we stand.

Doesn’t this next sentence just sum it up?

“Although there have been no studies among gay men and other MSM, there has been one report of HIV transmission occurring between two men when the HIV-positive partner had an undetectable viral load.”

Pitiful, really! Are we going to have to take to the streets again to demand efficient and relevant research which will end up saving the state millions in health care and why aren’t our large HIV organisations leading the charge?

The second article comes from aidsmap.com, which is generally regarded (just like CATIE) as a reliable and up-to-date source of information. The introduction is as follows:

“Aidsmap.com reports about 10% of gay men taking antiretroviral treatment have low levels of HIV detectable in their semen, according to new research. Whether or not this level of HIV in semen is associated with transmission is unknown.”

Now I thought this was interesting and went in search of this new research. It stemmed from a University of California study into the effect of the herpes virus on HIV transmission (read more here.) It involved 46 people, split between so-called HIV transmitters and non-transmitters and could hardly be called ‘large scale’. The Aidsmap article refers to 114 men in the study but even that’s hardly a significant research group. The point is that Aidsmap presents this as fact, based on ‘a US study’ when in fact it’s a little more complex than that and to state that 10% of men on HART have low levels of HIV in their semen seems pretty conclusive, yet it is based on a small study concentrating on the Herpes virus. Again, the statement may be true; it may be relevant and important but we need more evidence to back up global statements like that. (Editorial comment. PositiveLite.com says: even more important is whether such low levels of virus have any significance, i.e the ability to result in transmission. Is in fact the semen issue a complete red herring? We suspect yes, given the transmission history -  or lack of it -  in people with undetectable viral load in their blood.)

PositiveLite.com has quite rightly questioned the accuracy of aidsmap's references to the HPTN052 research, which is trundled out yet again yet proves practically nothing for gay men.  (Editorial comment; PositiveLite.com has since received acknowledgement from aidsmap that the aidsmap information was incorrect and that a retraction (apology?)  will be issued shortly. The moral is, as Dave says, question EVERYTHING you read.)

The article then goes on to say:

“But there have been rare case reports of HIV transmissions in the presence of an undetectable viral load”.

What rare case reports? How many? Why isn’t this being investigated right now, on a large scale, to actually establish some facts? It’s almost as if HIV organisations and sites have become so accustomed to writing generalised pieces that repeat the same old suspicions and assumptions, that it has become a new truth of its own. Why aren’t they screaming out for new research and not settling for worn out cliché responses?

It goes on:

“Untreated bacterial sexually transmitted infections (STIs) such as chlamydia and gonorrhoea may cause viral load to increase in genital fluids, even if a person is taking effective antiretroviral treatment.”

‘May’! Why don’t we know for sure?

Finally, statistics are rolled out:

“They also found that 36% of study participants with a detectable viral load were shedding HIV in semen compared to 6% of participants with an undetectable viral load…A urethral bacterial STI was diagnosed in 4% of men, but these untreated infections were not associated with the presence of HIV in semen.”

Okay, let’s assume that the study involved 114 men and not 46. 36% of 114 is 41. Is it really valid to come to wide-reaching conclusions based on the results of 41 people? The urethral bacteria numbers are even less relevant: 5 people out of 114!

The point is that readers take headlines and believe them to be true, when in fact they’re often based on such small-scale studies that they barely merit a mention. Of course, all these studies may be revealing vital information and should be reported but if one (small) study suggests a trend then it should be replicated on a wide scale across the HIV community in order to establish whether it is more than just a medical soundbite. It’s the responsibility of authors and their organisations to look at these things more critically and if necessary make readers aware of the scale and validity of studies, statistics and suppositions.

The reader also needs to question anything that’s not clear, or seems to be stated as fact when it’s not proven. The problem is that life’s just too short to take the time to do that. So the promulgation of half-truths and loaded headlines becomes the easy way out, eventually leading to mistrust and suspicion.

This article of mine may seem like an attack on two highly regarded HIV information sources; it’s not meant to be. I have used them as examples of what we see every day in articles and discussions throughout the HIV community. We really do deserve better than to be fed meaningless conclusions based on ‘maybes’ and ‘possibilities’ but it’s not the fault of the authors. News has to be reported, no matter how tenuous the facts.

Unfortunately, it looks like the HIV community has to start demanding again. Demanding proper, well, funded and large scale research at home and abroad. The World Health Organisation has a responsibility (and the finances), as does the pharmaceutical industry and every other research or research-funding facility across the globe, including the major philanthropists like Bill Gates etc.

I’m fed up with endless arguments as to whether an undetectable status is safe or not, or whether TASP, PrEP, PEP and various other acronyms are the way forward, or whether the viral load in your blood reflects the true levels in your body. Just how safe is condomless sex between sero-positive people on HART? The questions are endless but I would like answers and soon. Some people and organisations are dragging their feet in providing them. It’s a question of having the political will to do the necessary research and damn well prove things once and for all and if the ‘climate’ makes it difficult to instigate the discussion and find the evidence, then we’ll just have to scream and shout until that changes. If it doesn’t happen then confusion drives apathy and stigma grows.

When you next read an article about the latest theory concerning HIV treatment and transmission; count up the number of ‘statistics, if’s, may’s, possibly’s and researches show’ and ask yourself if you are being presented with new facts and are you learning anything new. If the answer is negative then you may well be being short-changed!

I’m fully aware that some people will be irritated by this article but then I hope they’ll respond and widen the discussion. If I’m talking out of my backside, I hope you will say so  - but you’re going to have to prove it! 

“That over one-third of LGBT people have been subjected to violence from an intimate partner is evidence of the brutality we can inflect upon one another, even those whom we claim to love.” 

David Phillips 

The quote above from David Phillips, was a comment on an earlier post of mine. At the time I thought, ‘Damn, he’s right. I should have mentioned that side of it in the article.’ Then a couple of days later it hit me that by saying that, he had inadvertently reopened a chapter of my life that I’d more or less successfully filed away. It shocked me that I hadn’t thought about it for years and that other events had overtaken it on my list of life changing moments.

It’s one of the last remaining taboos, along with men being abused by their wives. If you are a man you just don’t readily admit that you were in an abusive relationship …with another man and yet if the statistics are true and one in three LGBT people are being abused by their partners, shouldn’t we be talking about it? After all, we lay our sex lives bare and confess all about our relationships with HIV and yet revealing a past full of same-sex abuse somehow makes us losers, weaklings and unable to hold our heads up in society. 

An abiding memory I have is one which still gives me chills and one which David Phillips reawakened.

The pub would be its usual boisterous self on a Friday night. It was loud, full of smoke and both working and unemployed men from a tough industrial town in the North East of England. It was a straight bar and my partner’s brothers would be there, full of fighting talk and Newcastle Brown Ale (a lethal combination). I was sat on the edge of the group playing 5-card Stud, silently supporting my partner but not standing behind him, otherwise the others would accuse you of cheating. At any given moment but usually after Pat had had that elusive one beer too many, he’d turn his empty glass upside down on the table. At that moment my world would stop. The noise in the bar would be blocked out and my heart would start thumping in my chest. At that moment, mostly without warning, I’d know I was in trouble. 

I was 21 and he was my first real love, after a few years of fumblings, furtive adventures and infatuations here and there. He’d completely swept me off my feet. I was the deepest shade of green you could imagine and met someone who was street smart and a player and knew exactly how to manipulate my naivety; talk about putty in someone’s hands! I didn’t know he was psychotic, or had been behind bars, or was an ex-boxer, or was addicted to betting on the horses, or came from a family of five brothers living on and off in a small council house, with a mother desperately trying to cling on to the reins. I didn’t know that he had a sort of sugar daddy who worshipped him and funded his gambling and rent arrears out of his own meagre pension and hated me from the first moment he set eyes on me. I didn’t know any of that; all I knew was that he was the handsomest man I’d ever seen and after one night at one of his hook-up’s houses, after he had begged him to let us use a room, I was completely hooked. 

The timing was appalling. I’d just qualified as a teacher and had my first job in a town a few miles away. I had my own bedsit, my independence and loved the work I was doing. I was already set for promotion and my working future looked rosy. Pat ruined all that within six months. I should have taken the hint after a furious row during the morning after the first night before. I even walked away, horrified at the appalling arrogance of the man and the already evident aggression. The fact that I believed his apologies after he ran after me and swore undying love and unremitting attention, was a mistake that I lived to regret.

Funnily enough, looking back in many ways, I don’t regret it now. I grew up in those three years and I needed to and there’s no doubt that part of who I am now was forged through those harsh lessons. The road through life might have been easier and I would have avoided losing my job and my family and any other friends I used to have but in a perverse way, Pat taught me how to survive and read people in a way that I wonder if I could have done on my own. 

It was the beatings that I still carry the scars from, both mental and physical. I’m convinced that half of my current back problems come from his thumping me repeatedly on the back instead of the face, because I had to go to school and face a class the next morning. He would take out his rage on me and until that rage was spent, there wasn’t much I could do about it. In the beginning I fought back but I was out of my league and of course, the classic apologies and promises never to do it again always worked. Now I know I fit the profile of a classic abusee but I didn’t see it then. 

There came a point where it was too late and I couldn’t get out. The love changed to fear but I’d burned my boats with the schools, who got sick of my constant absences due to illness and I ended up on sickness benefit. I’d also turned my back on my family after a disastrous visit, during which Pat started an argument with them, as he loved to do with virtually anyone. My mother couldn’t take the swearing and the aggression and I ran out in sheer horror and shame. I learned later that Pat had added a few other choice home truths after I had gone and after that I couldn’t face them again. 

So there I was, living in his family home with battle-worn siblings and his mother who, in her own way, tried to take me under her wing. I had no job, I’d cut the ties with my family; I had nowhere to go. I had to adapt pretty damn quickly and learned what it was like to, shall we say, live on the other side of the tracks. I learned about honour amongst thieves and the fierce loyalty his family had towards each other. Luckily, his brothers were sympathetic. It was never mentioned that Pat and I were gay, although it must have been obvious. Pat was their brother and I was his partner and that’s all that was important to them; the rest of the world had better watch out with their comments.

We went down to London a couple of times to get jobs and I built up experience in different trades (supermarket manager, record shop manager etc). Again, I’m grateful for that. A teacher often goes from kindergarten to his pension without ever leaving a school situation and it’s frequently true when they say that a teacher is a man amongst children but a child amongst men. The problem was that Pat could never hold down a job and was repeatedly fired for starting rows and being aggressive. He’d take out his frustrations on me via alcohol and the beatings got worse. One day after turning up for work with a black eye and broken nose, the penny began to drop. 

To cut a long and painful story short, I eventually walked out on him; rang my parents and begged their forgiveness for two years of silence and asked if I could come home. To my astonishment, they later told me that they were convinced rough, tough, macho Pat was gay but didn’t ever suspect I was! Go figure! They protected me whilst I got myself together, got back into teaching, got my own place and got my life back on track.

What I didn’t know was that they had to put up with months of a drunken Pat ringing them, threatening them and abusing both them and me and once even turning up on the doorstep. Thank God they had the strength to put up with all that while making sure I never knew about it. It was only later when I came out to them and told them the whole story that they in turn told me about the aftermath of the break up. 

So why did I put up with all that crap for so long? Why would any sane and supposedly intelligent person allow his life to be dismantled and his body to be regularly battered in this way? Well, I could write a whole article about my theories as to why Pat was the way he was; a psychologist could have a field day but in the end you have to own your own mistakes and face up to the fact that it is nobody’s fault but your own. I was so naïve and my life experience had never prepared me for someone like Pat. I was in love, at least for the first year, after which I was in too deep and I was forever finding excuses for his behaviour.

From what I read now, these are classic avoidance techniques and classic abuser and abusee scenarios. My naivety also led me to romanticise the situation somewhat. His life and background was a sort of exotic ‘otherness’, with enough danger to make it exciting; it was almost seductive.

Only after the reality became apparent did all that nonsense disappear and it became a question of making the best of a very bad job. Perversely, although he was the beast personified in the outside world, he was passive sexually (more food for the psychologist). I’m sure that made him hate himself and by extension me even more but there you go, I just wasn’t aware what went on in the mind of a psychopath. 

There will be people reading this who make instant judgements. Yes I should have left him after the first fists were raised but nobody ever got away with threatening me in that way again – lesson learned! I’m not a masochist either; that was never a part of the equation. Yes, I should have been more responsible concerning my job and family; why would I put both in such a situation where they had to deal with my failure? I should have reported Pat to the police, or gone to a social worker. That’s possible today but in 1971, it was much more difficult. The police would laugh you out of the station and social services just weren’t equipped for same sex violence (they could barely protect people in heterosexual abusive relationships). Battered women’s shelters didn’t even exist and believe it or not, I still had enough pride to know that you didn’t go running to the authorities if you were being abused by your boyfriend.

One in three LGBT people are apparently still being abused by their partners. Believe me, it isn’t just physical abuse either. (One of Pat’s favourite tricks was to humiliate me in public by exposing my weaknesses in a sort of reverse snobbism.) Verbal abuse can be just as damaging although the scars are mainly on the inside and not visible to the outside world.

There’s clearly still a taboo round the subject. So, if it’s really true that a third of gay people are being abused by partners, why aren’t we hearing about it? Social workers will tell you that it’s a big problem which they do their best to deal with but society as a whole is far from sympathetic to the woes of the ‘sissy being slapped by his boy or girl friend’. Yet bullies can take all shapes and forms and same-sex bullies aren’t interested in having you as an equal partner, they search for conquests and possessions; people they can call their own property. It’s a mind- trip, a kick, a compensation tactic, call it what you will but if you’re on the receiving end, it can damage you for life.

Last week, I read a comment on an HIV forum that many young people wish older guys would stop giving in to the urge to tell their life stories…enough already! I get it, I really do. We come from a different generation, different circumstances and different truths and continually pushing the past into youngsters’ faces will of course turn them off big time. My point in writing this piece is that some things are universal and belong to every generation.

One in three LGBT people suffer abuse from their partners in 2013! Let that sink in for a minute. If it’s only half true, it’s shocking and proof that the stigmas and taboos are not confined to HIV. Surely, we as a community should be addressing this social cancer amongst us, or should we sweep it under the carpet like every generation before us?

Telling my own story has not been easy for me. I’m still ashamed that I let it happen (I’m blushing as I write) and with hindsight, which is a wonderful thing, I should have been strong enough to get out early but if one person reading this recognises the signs and makes the right decisions, then maybe it’s been worthwhile.

Remember, you can be outwardly the butchest creation on God’s earth and be regarded by society as a rock and someone who could deal with anything but behind closed doors, you could still be subject to someone else’s sadistic tendencies and living in your own private hell. It needs to be talked about and it needs exposing, so that people feel safe enough to get help if they need it. Unfortunately, breaking down society’s silence and disdain, is so much easier said than done. 

“You're only as sick as your secrets, but the truth shall set you free...” (via David Geffen).

Neuropathy is one of those diseases that affects millions of people (20 million in the USA alone) and between 30% and 40% of people living with HIV and yet if you ask 100 people on the street what it is, the vast majority of them won’t have a clue what you’re talking about. This article is meant to establish some facts and clear up some misunderstandings about the disease, especially in relation to people with HIV.

What is neuropathy?

Simply put, neuropathy is damage to the nervous system. The nerves have been attacked or compromised for one reason or another. Very often the protective layers surrounding the nerves themselves or the nerve cells have been destroyed or eroded and this leads to what you could term, ‘short circuits’ in the nervous system. This means that signals that normally travel between the brain, spine and the organs and limbs to enable normal function, are disrupted, causing both erroneous instructions and sometimes strange and painful symptoms. Neuropathy is categorised as a disease of the nerves, so it’s not just a random happening caused by an unexpected accident (except in those cases where physical injury is the obvious cause).

I’ve seen lots of sites on the internet about neuropathy caused by diabetes, or as a result of chemotherapy: is my HIV-related neuropathy the same, or totally different?

That’s true, you’ll see many more sites about diabetes-related neuropathy than anything else because diabetes is the commonest cause, especially in the Western world. There are however, over 100 different categories of neuropathy and over 100 different causes but that doesn’t mean that the neuropathic symptoms you may be feeling are generally any different to those brought about by other causes. Many things will bring about nerve damage but once you have neuropathy, you’re sharing symptoms with about 90% of all other neuropathy patients.

I don’t understand why people with HIV get neuropathy?

Don’t worry, you’re not alone. At first it was thought that people who had been on older HIV drugs (d-Drugs, Kivexa, Videx and others) were more likely to suffer nerve damage as a result. That is certainly still true in places like sub-Saharan Africa where older HIV meds are still distributed because they are cheaper. The neuropathy cases there are much higher than in the rest of the world. However, because people living with HIV are still getting neuropathy, despite being on modern combinations with no record of causing nerve damage, scientists began to look into why that was and have established that the virus is perfectly capable of attacking the nervous system on its own and without outside help. However, it’s important to remember that people with HIV can still be diabetic, or get cancer, or have alcohol problems, or any of the many other contributors to neuropathy. Finding the exact cause of your neuropathy can often be tricky but in the end, the cause is not as important as reducing the effects of the disease on your daily life.

I saw an advertisement from a local clinic that claims to be able to cure neuropathy for good: is that possible?

No, unfortunately, nerve damage cannot be cured at the moment. There are cases where nerve damage is caused by injury and if the surgeons are quick enough, they may be able to repair the damage at the site of the break but in almost all other cases, when the nerve damage is established, it is virtually impossible to repair. You can assume then that the clinic is exaggerating at best. These clinics are in the business of making money and unfortunately they have few scruples about promising people the impossible to boost their bank accounts.

However, what clinics, doctors, specialists and neurologists may be able to do is reduce the effects of the symptoms but that is entirely different to achieving a cure.

I’ve been told that the numbness, burning, tingling and pain will go away by itself; is this true?

This is where neuropathy can confound even the experts. Sometimes, if you haven’t had the symptoms for very long, they may gradually disappear, possibly due to the body being able to repair the nerve damage itself. However, in these cases, the nerve damage was probably only slight to begin with. In the vast majority of cases, if you have had neuropathic symptoms for more than 6 months to a year, you’re more than likely to be stuck with them and there’s a good chance that they will be progressive and get worse. At that point, you will need some help to cope with the effects and keep them under control. 

My neurologist says that my neuropathy probably comes from a back injury; is this possible?

Oh yes; it’s mainly called radiculopathy and is one of the many causes of neuropathy. It occurs when a nerve becomes trapped between discs and vertebrae (in the hands, it may result in carpal tunnel syndrome) and this is quite common. There is some light at the end of the tunnel for radiculopathy patients in that the trapped nerve may be able to be surgically ‘released’ thus relieving the pressure and the symptoms. However, the longer a nerve is damaged due to impaction, the less likely it will recover fully. A study in the British Medical Journal, showed that three quarters of back pain sufferers who receive no help will have pain or disability a year later, so the quicker you get your condition checked out the better.

I’ve been told that neuropathy is a natural result of aging; is this correct?

This is by no means true. Many neuropathy sufferers are older people but it affects people of all ages, especially in cases of diabetes, chemotherapy, or HIV-related neuropathy. Many African HIV positive children suffer agonies from neuropathy thanks to being supplied with older HIV drugs and neuropathy amongst Western children is unfortunately more common than you think.

My doctor told me I just have to learn to live with it.

Personally, I’d change doctor if I was told that but to be brutal, it’s partly true at the moment because there’s no cure for the condition. However, there are series of about 10 medicinal treatments (plus many alternative treatments) which you can work through until one of them reduces the symptoms for you. That’s not having to live with it; that’s finding the best current way of making your life easier and you shouldn’t accept anything less.

Lots of people I know have different symptoms and my pain isn’t the same as theirs. Have I got something else?

Just like the causes and types of neuropathy, the symptoms can vary widely but generally fall under one of the following:

• Numbness, tingling, burning sensation, pins and needles, twitching (even restless leg syndrome is a form of neuropathy), loss of balance and sharp, severe pains. These are most often felt in the feet (soles of your feet), legs to your knees, hands and arms but can appear on other body parts as well.

If you have what they call ‘Autonomic neuropathy’ then various involuntary functions of the body may be compromised (breathing, digestive functions and sexual performance amongst others) and bring further misery.

So just because your symptoms are different doesn’t remove the possibility of neuropathy. Personally, I believe the symptoms are pretty much unique to the disease and you know it if you’ve got it but both the degree of discomfort and the range of symptoms can certainly vary.

My doctor told me I have Idiopathic Neuropathy; what on earth does that mean?

Actually it means very little. Idiopathic neuropathy is not a disease on its own, or even a form of neuropathy; it just means the doctors can’t identify the cause of your problems. Many people leave the doctor’s appointment feeling both dissatisfied and perhaps even disbelieved if they are told their neuropathy is idiopathic and it’s the doctor’s job to reassure you that your problem is no less serious for it. Up to 40% of all neuropathy patients have idiopathic neuropathy but that says more about the efficiency of the testing systems than the severity of the symptoms. With causal diseases like diabetes, or HIV the doctor/ specialist/neurologist will probably make a reasonable estimate that the cause is linked to those external problems. Similarly, if you have undergone chemotherapy after cancer, that is a common cause of neuropathy but in many cases, the diagnosis is made on the basis of your symptoms, which are so clear that there is little dispute as to what you have. If you tell your story and describe your symptoms, you should never feel that you’re exaggerating, or being underestimated. The cause is not the end of the matter; the treatment that follows the diagnosis is what’s vital for you.

Although, I’ve worked my way through the medication lists, my neuropathy is now being controlled by opiates. The problem is that I have a feeling they’re not working as well any more.

This is a problem that many people eventually face. They work their way through this, that and the other medication and nothing has worked for long, if at all. They may also have reacted badly to the side effects of certain drugs and end up on opioids just to control the pain. The problem with opioids is that eventually, you need more of the same to achieve the same pain relief. This can be a horrifying scenario for many neuropathy patients and it requires careful and thorough monitoring by both your specialist and your home doctor. You should never be issued an opioid prescription and be left to get on with it; they’re not M&Ms. They are powerful and potentially addictive drugs which need careful handling. If you are in the position where your current opioid seems to be losing its power, then consult your doctor straight away; don’t wait until you are totally dependent and don’t ever try to go cold turkey. With careful handling, you should be able to move onto another sort of opioid but the after-care and medical control is vital.

Why am I being given antidepressants for my neuropathy?

That’s a very good question and one which every neuropathy patient should ask their doctor. Almost as far back as the Second World War, there has been an accepted course of treatment for neuropathy and there are roughly 10 drugs which can be tried until something works (or doesn’t).

1. You start with ‘normal’ analgesics, most of which you can buy over the counter
2. Then you move on to anti-depressants (either Selective Serotonin Reuptake Inhibitors (SSRIs) or Serotonin Norepinephrine Reuptake Inhibitors (SNRIs)). Those names may not mean much to you but the most common antidepressants used for nerve problems are amitriptyline and nortriptyline (Aventyl, Pamelor), which were originally developed to treat depression.In theory these can reduce pain by interfering with chemical processes in the brain and spinal cord. In the second group of antidepressants (SNRIs) you will often see duloxetine (Cymbalta) prescribed but there are others in both groups. The problem is the potential for side effects (nausea, drowsiness, dizziness, constipation and lack of appetite) and many people find these worse than the neuropathy symptoms themselves.
3. If the anti-depressants haven’t worked or been effective enough (and unfortunately this is true for most neuropathy patients) then you will probably be moved on to anti-convulsants, or anti-seizure medications (drugs meant for epilepsy). These include; gabapentin (Gralise, Neurontin), topiramate (Topamax), pregabalin (Lyrica), carbamazepine (Carbatrol, Tegretol) and phenytoin (Dilantin, Phenytek) but once again, the side effects can be a big problem. These drugs work on the sodium channels and neural signals in the brain and spinal cord. If you’re having problems with a drug, don’t keep going because you don’t want to complain; discuss it with your doctor. By the way, Pfizer, the makers of Lyrica have withdrawn their own promotion of the drug for diabetes and HIV-related neuropathy because a) it has been proved to be largely ineffective and b) they were being confronted with more and more court cases thanks to the side effects. When a major drug company withdraws positive advice for its own money-spinner, you should take note, despite what your doctor may say.
4. If the anti-convulsants haven’t worked then your doctor may well ask you to try a number of other treatments before moving on to the serious stuff. These include lidocaine patches, capsaicin patches (based on chili pepper extracts); various supplements such as Acetyl-L-Carnitine and Alpha Lipoic Acid (there are many more) and even yoga, acupuncture and courses of exercise. Even marijuana is being recognised as being an effective neuropathic pain suppressor (depending on the laws of your area). These treatments should also not be taken lightly however, especially the patches which can cause painful burning if not applied properly.
5. Finally, if all else has failed, you may be put onto drugs from the opioid family such as Tramadol, Oxycontin, Tapentadol and morphine. The question above talks about how these should be approached and it cannot be overstated that you need help both beginning these drugs and coming off them if you need to. Constant monitoring of progress is essential to avoid addiction and unnecessary suffering from side effects. Your doctor should do this but if possible, get your specialist to double check; you should never be allowed to plot your own course through opioids. They will however, work if used properly but remember, if your pain is much less, it doesn’t mean that your neuropathy is being cured, it just means that the symptoms are being suppressed by the drugs. 

I’m at the end of my tether. I’ve tried everything and nothing makes the pain away completely. What can I do?

I wish that I could offer you more than platitudes but at this moment in time, the drug companies are working very hard to develop new treatments for neuropathy. They have finally woken up and recognised the scale of the problem and have realised that using drugs meant for other diseases is like putting a plaster onto a severe injury; it can only be a temporary and unsatisfactory solution. Furthermore, they have realised that finding effective treatments for neuropathy will be a huge money-spinner and without being cynical, that’s their bottom line. Consequently, extensive research is being done at molecular, cellular and even at DNA level to discover how nerve pain actually works and what can be done about it. The bad news is that it will be some years before anything gets onto the chemists’ shelves and is available for most patients. Quite rightly, all new treatments have to go through assessment procedures, trials and approval from medical authorities before they can be deemed safe for the public. It’s frustrating but better that than serious mistakes. 

In the meantime, if all the accepted treatments have failed, you do unfortunately have to learn to live with neuropathy and the way it’s affecting your life, in the best way you can but you’re not alone and there are many strategies which you can try to relieve your symptoms. Following the links below will provide you with lots of information to do just that.

What you need to remember is that everybody reacts differently to current neuropathy treatments; what may work for one will not work for another. You need to plough your way through the minefield until you find a single drug, or combination of drugs, supplements and alternative treatments that will help you. If, despite all your best efforts, like the questioner above, you’re still plagued by almost unbearable symptoms, you need to get support from your specialists, your doctors, your families and your friends. You may not look ill from the outside but you need to convince people that you have a serious problem and that occasionally you need a listening ear, or a hug or a good chat to unburden yourself. You may be surprised; people may not be able to feel your pain but they can be amazingly empathetic at times. Neuropathy support groups and forums may help fill in the gaps. 

Further information: (there are many more sites – just Google and see) 

http://www.neuropathy.org/ 

http://neurotalk.psychcentral.com/forumdisplay.php?f=20 

www.neuropathyandhiv.blogspot.com 

http://neuropathyawareness.blogspot.nl/2011/11/living-life-with-peripheral-neuropathy.html 

http://www.neuropathytreatment.com/

Most people have to deal with various illnesses and complaints during their lifetime and by definition, the older you get, the more likely something will come along to ruin your year. If you are HIV-positive then it’s an extra burden on top of the illnesses you might have reasonably expected to get according to your age and lifestyle. This means that at one time or another or if you’re really unlucky, permanently, you’ll be taking multiple medications at the same time to deal with what’s ailing you. This is when you really need to watch out for what you’re putting into your body because the very things meant to cure or control your problem may end up fighting each other in your system, to the detriment of one or the other, or both. Not only medications can interact negatively but supplements and vitamins can influence the working of your medical treatment also.

Drug interactions are a serious issue and for people living with HIV, it’s not just a question of avoiding grapefruit and St. John’s wort. It requires careful checking of each of your HIV drugs and components against anything else you might be taking, to see if one reduces the efficiency of another, or worse, interferes with it to the point of making it dangerous.

Most people take medications on trust. They go to their doctor or specialist and are prescribed something to treat a specific problem. If you’re lucky you’ll be warned about possible side effects but mostly you take your doctor’s word as being gospel and swallow your drugs at the appointed times each day without a second thought. Furthermore, most people don’t read the information leaflet inside the box, a) because they don’t want to become paranoid about all the possible side effects; b) because the print is sometimes so small you need the Hubble telescope to read it or c) because they just can’t be bothered.

The list of potential side effects is indeed intimidating but if you remember that it’s there to cover the pharmaceutical company’s ass if something goes wrong – “Well, you were warned in the leaflet!”; you can read the most common side effects and then do your own research on the internet. However, reading the leaflet anyway is not a bad idea, if only to see whether the recommendations match up with what your doctor has told you. If they don’t then you’re entitled to phone and ask why; there may well be a reasonable explanation but leave nothing to chance.

Doctors are also human beings who make mistakes; they shouldn’t but they do and we should be able to forgive them for it, considering their workload and stress levels plus the fact that you may be patient number 35 of the day and he/she can’t remember that this particular antibiotic actually clashes with this particular HIV medication. It happens more frequently than you may think and when something goes wrong it may be some considerable time later and the mistake may be very difficult to trace back.

HIV meds are complex compounds and in order to work to the optimum, they have to be taken at the recommended times and regularly but if they are mixed with other chemical drugs meant for other diseases, the clashes may have consequences. It’s logical really. In the best of all possible worlds, the right prescription is given for the right disease and the eventual interactions will flash up on your chemist’s computer screen before you even begin the course. However, in the real world things will be missed, especially when  taking supplements over which your doctors or pharmacists generally have little control.

It’s up to us then to check everything we throw down our throats because simply put, it’s in our own best interests.

The links shown here are two of the best sites for checking both what’s in your drugs, what the side effects are and what the possible interactions with other drugs can be. . . . 

The 17^th Annual HIV Drugs Guide and How do your medications interact with others? 

There are other good drug comparison sites on the net but these two are trustworthy and you really need accurate information. If in doubt double check somewhere else.

Whenever you come away from the doctor or specialist, take a few minutes (it really doesn’t take long) to use these sites to see exactly what you’re taking and what its purpose is and then check its interactions with any other medicines, or supplements you may use.

N.B sometimes you will need to enter the proper name of the drug and not just its market name. For example, Truvada is a combination of Tenofovir and emtricitabine and Isentress is Raltegravir. This is because different countries often have different brand names for drugs but you will always find the proper name on the box, generally in brackets after the brand name. Most common supplements can also be checked on the second link.

If you have any doubts at all about clashes or contra-indications, or even side-effects, first check that you haven’t misread the information and then don’t hesitate to contact the person who has prescribed it for you. They may be slightly irritated that you’ve had the nerve to question their judgement but really they should be pleased that you’re so on the ball because if there is a problem and your HIV or other drugs are compromised by something else you’re taking, then they won’t work properly and the last thing you want is to be resistant to this that or the other because of other chemical influences. Doing a bit of research on your own may save wasting time and money due to complications later. 

If you think that you’re perfectly healthy, your HIV regime is working fine and everything is hunky dory, remember that you may become diabetic, or be unlucky enough to get a cancer, or any one of a myriad of lesser or greater diseases later in life – it happens! Remember also, alcohol is one of the commonest negative interactions with drugs so everybody needs to keep their wits about them. Besides that, even antibiotics used for common infections can interact with your HIV meds. There are enough good alternatives, so why put yourself through more misery for the sake of a few minutes reading up the facts.

I’m aware that this all sounds a bit like a lecture from your parents and I apologise for that but so many people are unaware of both what they put into their bodies every day and how one chemical can work against another, that it can’t do any harm to at least think about adding these two links to your favourites, in case something comes up in the future. Don’t rely 100% on doctors; they just don’t have the time or the resources any more to check absolutely everything in the pantheon of medicines and remember your case is unique; you may react badly to a certain drug while others don’t.

It seems a no-brainer to be at least partially responsible for looking at our own treatment efficiency and sharing the load with doctors. Your treatment should ideally be a partnership between you and your doctor instead of being one-sided and assuming that ‘God doesn’t fuck up every now and then’. Don’t let yourself be caught out by ignorance; you’re the only one who may suffer in the end.

Further information:

http://www.fda.gov/ForConsumers/byAudience/ForPatientAdvocates/HIVandAIDSActivities/ucm118915.htm

http://www.hivclinic.ca/main/drugs_interact.html

http://www.nlm.nih.gov/medlineplus/druginformation.html

http://www.prohealth.com/library/showarticle.cfm?libid=13668

The problem with scare-monger titles like this one is that you can be accused of over-reacting (especially if it turns out to be a false alarm) and therefore devaluing every warning in the future. That said, sometimes the message is more important than the delivery and a dramatic title may at least catch the eye.

Recent reports concerning the deaths of HIV positive men in New York who have suddenly contracted a new strain of meningitis may seem localised (especially when you look at the numbers involved) but they may well be the precursor to a very serious problem indeed. The ease in which meningitis can be spread, both sexually and via normal social contact, makes the New York situation a problem we ignore at our peril.

We can’t forget that HIV began as a localised problem with a few people coming down with strange symptoms. The good news is that there is a vaccine to prevent it; the bad news is that if you already have it, you need to get help before it’s too late.

“The Health Department issued new recommendations today for vaccinating against invasive meningococcal disease – commonly known as meningitis – after an increase in cases. Vaccinations are now advised for men, regardless of HIV status, who regularly have intimate contact with other men met through a website, digital application (“App”), or at a bar or party.”

(March 6, 2013, New York Department of Health and Mental Hygiene.) 

Many people won’t really understand what meningitis actually is, so first, a few facts.

The meninges are three protective membranes which cover both the brain (cranial meninges) and spinal cord (spinal meninges). You could describe them as layers of glue, following every contour of the brain and they prevent fluids from coming into contact with the brain and spinal cord. In this way, the nervous system is protected from blood and other fluids pressurizing those vital organs, although there is a layer of cerebro-spinal fluid between two of the membranes. They also serve as a framework for blood vessels. Isn’t nature wonderful!

Meningitis happens when these membranes become inflamed or damaged. There are two distinct types: viral meningitis and bacterial meningitis and generally, meningitis can be treated with antibiotics. The current problem in New York and amongst LGBT people is that this outbreak is a new form of bacterial meningitis (meningococcal) and it is very easily spread from person to person. It is unique and so new that it hasn’t yet been named but it is particularly deadly and kills one out of three people instead of the normal one out of five, as with other forms of meningitis. Most worrying of all, it seems to be targeting gay men.

Those are the basic biological facts; so what has actually happened in New York and should we be worried?

Since 2010, there have been 22 reported cases; 13 of them in 2012 and four so far this year. Seven of them have died and 12 were HIV positive. The cases are spread across various New York districts and the pattern and connection to HIV is just beginning to be fully realised; hence the warning from the authorities.

“It’s been sort of marching through the community in a way that makes us very scared,” Dr. Jay Varma, the deputy commissioner for disease control at the city’s health department, said last week.

Because meningitis very often attacks young men, the 12 cases of men in their early 30’s; eight of whom were HIV+, becomes an alarming factor. Four new cases in the last month and four deaths among the 12 younger men; plus the fact that the normal incidence of bacterial meningitis amongst gay men is about 20 times higher than in the rest of the population, all adds to the growing sense of alarm.

“Fortunately for meningococcus, we surely have the tools to prevent the next case. A vaccine is available to prevent almost all the cases seen in the U.S. It’s comprised of bits from four of the five strains that cause most human disease. In the usually drab world of hard-boiled science, these strains are organized by an eccentric lettering system: A, B, C, Y, and W135 (don’t ask). The current shot works against all but the B strain, which remains difficult to develop for reasons that only a vaccinologist could describe.”  (Kent Sepkowitz: Infectious disease specialist.)  

So what happens if you get meningitis and what should you look out for?

The symptoms of meningitis usually emerge pretty quickly (normally two to five days after contact) and because they progress very quickly, it can be a fatal disease if not treated as quickly as possible. It can go from a fever, to a headache; maybe a rash of red spots and a stiff neck and then death within a few hours. Without wishing to exaggerate in any way; people have reported sick and have died before the ambulance could arrive. This is a nasty disease. People need to see their doctor and receive at least preventative, prophylactic antibiotics as soon as humanly possible.

“This disease is spread by prolonged close contact with nose or throat discharges from an infected person. Examples of prolonged contact include living in the same household or intimate activities, including kissing and sexual contact.” (HIV and Hepatitis.com)

So yes, unfortunately sharing cups, tooth brushes and all the things that led to stigmas for HIV are pertinent in the case of meningitis.

What can you do about it if you display these symptoms?

First of all, we all know how common these symptoms are individually and how easily people may panic at the first sign of a headache, so it’s important to listen to your body and take action if you know that the symptoms you have just don’t feel normal. If you’re worried, contact your doctor immediately and report both your symptoms and the story behind them. In this way, the doctor will have a reference point from which to start and know what he or she should be looking for. This is a disease where quick action could save lives, so without being pushy, make sure you’re taken seriously. Unfortunately, the vaccine won’t cure those who are already infected but that equally doesn’t mean a death sentence. Quick and effective treatment is the key but delay can be dangerous.

What should you do if you have no symptoms but are now pretty worried that you’re at risk?

Again, try not to give in to rampant hypochondria (we’re all guilty of that from time to time!) but be aware of your local situation. If you live in New York, then you should heed the warnings and get vaccinated; if you live elsewhere, it will do no harm to ring your local LGBT/HIV/local health authority and ask if any cases have been reported near you and what their policy is. It may be that a vaccination is advisable for all gay men, especially younger gay men but then you may meet problems of availability, cost and general unwillingness plus the inevitable insurance coverage issues. Your local LGBT groups may be able to put pressure on health authorities to implement a vaccine programme or at least make the vaccine readily available.

As you may have gathered from reading so far, bacterial meningitis is no joke. Hopefully it will remain confined to small outbreaks but as this snippet from The Daily Beast shows; medical practitioners are holding their collective breath at the potential of this outbreak:

“So when the New York City Department of Health and Mental Hygiene yesterday sent around an alert about recent meningococcus cases in HIV-positive homosexual men, it caused a real gasp among practitioners everywhere—this one is scary. When you see a newspaper photo of people in a town lined up for shots and pills to prevent spread of the case of meningitis, it’s meningococcus causing the problem. Its name, which is already alarming enough, actually understates its potential devastation. The meningococcus bacteria can cause two different diseases—when it’s “just” meningitis, the death rate is about 10 percent, but the more lethal sepsis form (called meningococcemia) kills about half by overwhelming the body’s blood vessels while sparing the brain’s lining. We don’t know yet which manifestation is being seen among gay men in NYC—perhaps cases of both—but the high death rate suggests the more dangerous meningococcemia.” 

Finally…

It does seem cruel doesn’t it? We’re coming to terms with the consequences of HIV and both living longer and developing effective strategies to avoid its spread and along comes something else to scare the living daylights out of us. It may all turn out to be a storm in a teacup (with respect for those who have already died) but if HIV/AIDS taught us one thing, it’s that our own organisations are sometimes quicker to sound the alarm bell than the authorities.

That’s possibly not true in this case. When the New York medical authorities advise all gay men to get vaccinated that’s a pretty swift official response and one that shows how seriously they are taking the threat. They too may have learned their lessons from the past and want to prevent an epidemic before it takes hold. However, the problem is getting the message out.

What happens if you’re active sexually, or using intravenous drugs, or hiding behind marriage, or hiding from stigma, never read the gay press or websites and don’t take much notice of health warnings? These are the guys that may be at greatest risk and the ones who could spread bacterial meningitis out of control. The warnings need to be displayed as widely as possible; in doctors’ waiting rooms, hospitals, train stations, public libraries and of course, all gay establishments, wherever, in order to get the message across.

It’s not the only cloud on the horizon either: the spread of bacteria resistant gonorrhoea and the potential for resistant strains of syphilis and hepatitis may be occupying our thoughts in the years to come. It’s the way of all viruses and bacteria; those life forms have a survival instinct just as we do and are constantly seeking out ways to resist the things we develop to kill them. Plagues and viral epidemics are a part of human history; there’s no reason to suppose it will stop now. The key is remaining alert and just as in New York, reacting quickly when a threat comes along.

Bacterial meningitis is easier to catch than HIV and potentially much deadlier; the good news is that we can vaccinate against it at the moment; the bad news is that making people aware of this is not as easy as it sounds.

Further information:

http://en.wikipedia.org/wiki/Meningitis

http://www.dailykos.com/story/2013/03/24/1196531/-Health-Alert-Meningitis-Outbreak-in-NYC-Among-Gay-Men

http://www.huffingtonpost.com/michael-broder/gay-meningitis-outbreak-new-york-city_b_2932956.html

http://www.queerty.com/nyc-health-dept-issues-meningitis-warning-for-gay-men-20120928/