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Maurice's

Liquid Ritonovir

You may have heard about the horrid taste of this version of this strong protease inhibitor. It is 43% proof alcohol! The equivalent of a strong gin! Now called me old fashioned but 43% alcohol is a strong drink whatever you call it. It certainly makes a bracing start to the day! Maybe it is my maturing ability to appreciate strong flavours or distant memories of alcoholic abandon, but for whatever reason, I quite like the noxious poison. It is true that the after taste overrides delicate flavours but it can also produce some interesting and original tastes when combined with a full bodied flavour like smoked mackerel!I hope it will be ages before the new capsule formula comes into production to replace it.

Disturbing News

On my trip down to London for the second Dr Fax Symposium on the latest treatment issues and clinical trials (Full report in next issue) I happened to discover some news which worried me. It came from one of my best London friends who told me that on his last visit to the Kobler Centre where he does voluntary work there was standing room only! People were coming in because they were ill (obviously) but not from the major opportunistic infections like KS, PCP, Thrush etc., but from emotional/mental problems which had no rational foundation. Sudden mood swings, horrendous dreams, feeling ill for no apparent reason. He told me that their viral loads were undetectable and their CD4 counts were high in other words, they were “Clinically” healthy but in reality not feeling at all well. Isn’t it odd that just as we are seeing the old equation:

disappear, we now find it replaced by:

It may take longer to knock this one on the head than the previous false equation. However, even from my own experience, I know that good lab results do not equate with excellent health. Of course there is a strong connection.
There is also no mistaking the elation you feel when your results are good. But the good results don’t alter reality. Reality for me is a day which takes into account:

	painful feet and stiff leg joints every morning;
	observing a strict drug regimen and its dietary requirements;
	Insomnia
	making provision for accidents of diarrhoea, eye and throat irritation
	Fatigue - ensuring that I am able to “crash out” when my body signals the need
	(I almost forgot) coping with a zero sex drive! (Four years of celibacy)

At present I am able to cope - none of these problems are insurmountable. It would be true to say that I enjoy a very full and interesting life. With the help of external aids like complementary therapies and a few good friends and a holiday now and then it is manageable. So why make a fuss? The answer is:

Complacency!

By saying nothing, I honestly feel that I am adding to the growing complacency about HIV & AIDS which is to be found everywhere. Too many people are under the impression that the new drugs are a cure. More and more people are having unsafe sex in the belief that even if there isn’t a cure the disease can be easily treated. Another problem is that people are not able to keep to their medication regimes for a whole range of reasons, which results in drug resistance. “Salvage Therapy” provides an untested solution. It involves piling on extra powerful drugs to drive viral load down and boost CD4 counts. No one knows what this amount of toxicity will do to the human body. Heaven knows there is little enough monitoring being done on triple combination therapy as it is. Lypidostrophy only became a problem when people started to have external abnormalities - “Crix Belly” & “Buffalo Hump” which pointed out the more serious internal implications of narrowing arteries. I have no wish to be regarded as a scaremongerer but I feel a need to flag up things like complacency and insufficient monitoring. I was reading Edward Helmore’s interesting article in the Guardian which contained many good points. However, I was incensed when I read the following:

“Part of the problem, doctors say, is that HIV patients know too much about their disease and treatment”

I really resent this kind of ill informed opinion. It is only by becoming knowledgeable that we are empowered to make wise decisions. It is only by learning as much as we can that we can highlight problems like inadequate monitoring. Maybe I am a lone voice, maybe not. We are all guinea pigs, like it or lump it and we can at least squeal. If enough of us squeal together the sound is bound to be noticed.

BP Staffordshire

Talking of togetherness Body Positive Staffordshire (self-help group of HIV+ people living in Staffordshire) is one year old on 3rd March. It is time to celebrate its first year and to make plans for the future. Following the drop-in on Tuesday 30th March there will be a special “do” :

Culture

After an enjoyable holiday in Spain where I was fortunate to see some live theatre in Granada which must have wetted my appetite because I have since seen shows at the Lyceum in Crewe, The Gateway in Stafford and the Royal Exchange in Manchester. But best of all I have discovered that we have some of the finest theatre to be seen here on our doorstep at the New Victoria Theatre. In the November /December issue of Positive Lives I reviewed “Kiss of the Spider Woman” directed by Michael Cashman and described it as stunning. Maureen Cuell reviewed “Othello” which she clearly enjoyed as did I. “Dead Funny” was a really fine comedy using bare flesh to soften the examination of raw truths about life as it is. “Twelfth Night” was the second Shakespeare play in the season performed by a top rate touring company. The present show is “She Knows Y'know!” written by Jean Ferguson (Last of the Summer Wine) who also takes the central role of Hilda Baker. I will let you know what I thought about it in the next edition.

Until then,

Take care of yourselves...

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