Before talking about my own personal experience of HIV, I think it is worth remembering that HIV and AIDS is not a ‘gay plague’ confined to gay people. This is how certain right-wing political and religious groups describe this chronic illness. It effects everyone, all races, homosexual, bisexual, transsexual, heterosexual, young and old alike.
Good health is important to each of us. In late 1994 I discovered the hard way that I was HIV+. Having the HIV virus is no picnic, even in the era of combination therapy. There is the no small matter of taking lots of pills every day, probably for the rest of one’s life. Then there is the discipline of taking each pill at the right time. Finally, the side effects of the drugs themselves. The D4T I used have to take caused neuropathy (pains in the hands and feet) almost all the time, accompanied by a numbness, bit like pins and needles. Wonderful as these new drugs undoubtedly are, they guarantee nothing. They are not a cure, the long-term effects are completely unknown. There is only one way to avoid HIV and that is not to get infected in the first place.
Back in 1993, I developed swollen glands all over my body, under the armpits, neck and groin. I had a very hard time swallowing with comfort. I decided to go to my GP, (who luckily was gay) and told him my symptoms. His verdict was something of bombshell. He reckoned I could well be infected with HIV, but told me it was not the end of the world and to get on with life. Well after several weeks of worry, I did just that. The swollen glands and general ill feeling remained. I then got an eye infection and then an ear infection. Then my food started to taste peculiar and so it went on until finally, I went down with a lung infection. My first and nearly fatal attack of PCP (pneumocystis carinii pneumonia).
It was December, 1994, and I was feeling very ill. After months of suffering one minor infection after another I was admitted to North Manchester General Hospital with PCP (pneumocystis carinii pneumonia), a rare form of pneumonia, but common amongst people infected with the HIV virus.
Whilst I was in hospital I was counselled on the pro’s and con’s of having an HIV Test. I decided without much hesitation to go ahead and within 24 hours the result came back positive! I can’t say I was that surprised. Having had unsafe anal sex on a fairly regular basis with a regular partner around that time.
Many of the symptoms described above occur in many other much more common diseases, so it is best not to jump to any rash conclusions. If you are worried that you may have become infected, or concerned you may have put yourself at risk, then you need to decide whether to have the HIV Antibody Blood Test.
After two weeks of hospitalisation and lots IV treatment with drugs I emerged into the world outside again. Having recovered from the initial PCP, I refused all medication hoping that my immune system would be able to cope with the aid of mega doses of vitamins and a stress free life. Unfortunately however, my health began to decline again, I contracted MAI (a form of tuberculosis) and I was forced down the drug route. I have since suffered two further attacks of PCP, the last whilst on combination therapy in 1998, thereby underlining the fact that these drugs are not a cure all.
I have been on HAART, or highly-active anti-retroviral therapy, now for nearly 17 years. Having been literally close to death in 1996, with a CD4 count of zero, I have done remarkably well with this medication, finally achieving an undetectable viral load around the year 2000. I began in mid-1996 with the only drug then available, AZT. My first real combination was with Saquinavir, 3TC, with D4T substituted for the AZT which made me very anaemic. The AZT made me so anaemic that I had to have a blood transfusion every three weeks or so, which involved an overnight stay in hospital. I then started my second combination therapy consisting of Sustiva (DMP 266) and Abacavir in the spring of 1999, the side effects for me after almost over a year on this were a certain manic activity, anxiety, some depression, but overall less pills to take, which was a relief! During this period I was also on DDI, another anti-viral drug and Septrin (co-trimoxazole). The latter was to combat my susceptibility to PCP.
In February of 2003, I started my fourth combination. I was put on two of the lastest antivirals, the first called Tenofovir and the other called Nevirapine. This replaced the DDI, another antiviral which can cause neuropathy. Out went the D4T and DDI, that was good news, I might get less neuropathy. I still take the Abacavir, a drug which I have never had much side effects from. This change was brought about not by a failure of the drugs themselves to control the virus, far from it, but rather to counter the anxiety and depression caused by the Sustiva (DMP 266), which had become a real quality of life issue for me. I did very well on that regime, with no really bad side effects. My latest combination which started in 2005 consists of Abacavir (again), Tenofovir and Raltegravir coupled with Aciclovir. This has had spectacular results, my viral load is undetectable and my CD4 count has been over 900! So I have come far indeed. My immune system is now in the lower range of normal So, my health is almost back to something like it was before all this overtook me. My energy levels are not quite the same, but then I’m getting a little older too. I stopped working when I got ill back in December 1994 and currently live on my pension. I have no difficulty however in filling my days. Being a keen gardener, poultry lover and wildlife enthusiast, there is always lots to do and see. My various web sites also take up a lot of my time too – see Passions page.
I guess I’m what is known as a ‘Long term Survivor’. It’s almost 20 years ago now since I first became ill with HIV and was facing certain death. I remember only too well my HIV outreach nurse telling me I would be dead by Christmas of 1996 and crying my eyes out. I do have however have a certain determination to stay alive. I wrestled like hell with my first bout of PCP, the worst one that nearly finished me off. I can clearly remember voices whispering in my ears as I lay on my hospital bed tied to a drip of Septrin. I was one of the lucky ones and yes, I’m very glad to be still alive despite it all. I will be 66 yrs old this coming October, 2017 and I know only too well that other health worries are waiting just over the horizon. The long term affects of taking HIV medication for getting on for twenty years is unknown, heart problems and cancer are more common amongst people with HIV. I know you’ve got to die at some point from something, but I just hate the thought at the moment. When I’m in a lot of pain or I’ve completely lost my marbles, I might be more willing to shake the hand of death, but not now please.
My Health (update early winter 2017)
Having had my foot amputated, I was kept in hospital for 5 weeks for healing and physiotherapy. After discharge from hospital during March, I was supplied with a prosthetic limb. Here was where the hard work started. Learning how to walk with an artificial limb was difficult and painful. To begin with, I could only manage a few minutes. But after many weeks I started to walk for a few hours, relatively pain free. Now I can walk for many hours and I’m almost back to mucking out the hens again. Its been very stressful at times and the whole experience has taught me to be more patient and more willing to listen to free advice.
My Health (update early summer 2017)
During the summer of 2016 and beyond I was suffering from a foot ulcer on my left foot. Despite various treatments it failed to respond and during January 2017 it started to get a lot worse. One or two of my toes began to look black and my foot had become more and more painful. In addition I started to have intense shivering all over my body, luckily paracetamol managed to get rid of it for a while. All this culminated with me being referred to a local hospital as an urgent referral. The doctor there said the foot had started to break down and was now infecting the whole body and needed to be amputated urgently. Bit of shock to hear this, but not entirely out of the blue as my own GP had told me that unless I bed rested for 5 to 6 weeks this would be the likely outcome.
Whilst at the local hospital, I was waiting to be ferried over to one of the main hospitals in the Highlands when I started to become delirious, and from then on new little of my transfer to the main hospital. I later learned that I had pneumonia which required a high dose of antibiotics. I had my foot amputated a day or so later. The pneumonia was on the wain and I was feeling a lot better.
I was in the hospital for 5 weeks, during which I had quite a lot of physiotherapy. I finally got back home in early March with a wheelchair. It is now mid May and I’m waiting for a artificial limb.
My Health (update Summer 2016)
My sciatic pain in the legs has now gone thanks to the back operation back in March. However, the weight loss, lack of balance, inability to walk properly and weakness in my left arm remain. I’ve purchased some rather expensive Whey, the sort that body builders use. Not got round to taking it yet. Any suggestions would be welcome as the stuff is not very palatable. The idea here is to put lean muscle on as a first step and hope the nerves come back.
My Health (update Winter 2015/16)
Recently been loosing weight and worryingly almost one and a half stone (10 kilos). Most of it seems to have been lost from my bottom. Together with this has been what can only describe as muscle wastage, from my arms. So much so that lifting anything above waist height is difficult. A typical example like lifting a 4 litre drinker (for the hens) over a 3 foot fence is almost impossible. Or another example, lifting a 4 litre bottle of milk off the kitchen work surface, I had to drop it as my left arm just couldn’t bear the weight. My weight at present is just under 9 stone (57 kilos). I am currently investigating treatment along with my GP and HIV Consultant. One option is taking weekly testosterone injections to regain lean tissue over several months.
My back problem has got a lot worse and now it seems an operation is required. Having had a full scan of my spine, which shows a vertebrae has slipped out of line and is pressing on the spinal cord, I’ve been offered a spinal fusion operation. This involves a metal cage with screws and rods being inserted to fuse two vertebrae together. A long recovering period is envisaged, lasting several months, during which the vertebrae should have grown into each other (fused). The operation is offered at Aberdeen hospital and will probably require up to 7 days as an in-patient. An update to this. I have now had the operation in which a metal cage was inserted into my spine. It has already stopped the sciatic leg pains I was suffering from. The long term prospects look very promising, however the weight loss (HIV wasting syndrome) will need to be addressed urgently.
My Health (update Winter 2014/15)
I went for another MRI scan in September 2014. The results were fairly predictable in that the scan shows an abnormal spine. The lumbar vertebrae L4 and L5 are the ones with the damaged discs. My consultant said that the option to have an operation was not really on, as the risks far outweigh the possible benefits. I’ve heard that some people have had operations on more seriously damaged vertebrae with good results, only to see the problem reapear one or two years later.
Depressing as the reality is, I just get on with things. Over the last six months there has been a significant change. The location and nature of the pain has now changed. It can only be described as a very painful spasm in the left buttock and extending down the leg, making walking especially painful. Unfortunaltey, sitting down does not really bring relief either, especially if I’ve been on my feet for a few hours. After resting my legs for a significant period, it slowly subsides. But walking remains a painful process, at the moment at least. I will just hope in time it will change again and allow me to walk a little better.
My Health (update Autumn 2013)
I decided not to have the bone scan as there was nothing in the x-ray to worry about. I have had spinal problems stretching back over a number of years. It has now got to the point where I have to take strong painkillers and the symptoms recently have been a bit worrying. I’ve had numbness and considerable pain on both legs and more recently numbness coupled with a burning sensation around the genital area and around my bottom. I went to my GP and explained the new developments. He thinks I should have it investigated. The nerves affected are called the cauda equina, they are abundle of spinal nerve root fibers at the bottom of the spinal cord. This structure resembles a horse’s tail, which is what its name means in Latin. It supplies sensation to the thighs, buttocks, genitals, and the area between them, which are called the saddle area because they are the area of the body that would touch a saddle. My doctor explained that we should investigate, just in case it could be Cauda equina syndrome, caused by pressure, as may result from a ruptured or herniated disk, or heaven forbid, cancer of the spine . So I will have to have an MRI scan to clarify the problem. More on this later.
My Health (update Spring 2013)
Having experienced shortness of breath I went to my local GP. He arranged for a chest x-ray, which I duly had a few days later. A week or so later I retured to my GP for the result. Thankfully nothing really scary, however the x-ray did show a rib fracture. I don’t remember falling or anything, so we both are a little puzzled. My HIV consultant has been informed and wants me to have a bone scan. Not decided yet, so more on this later.
My Health (update Winter 2011/12)
The ageing process seems to be in full swing. My back problems continue, making walking first thing in the morning a real effort. The pain is also getting worse and having had a MIR scan last autumn, there is apparently significant disc problems. I’m now on fairly heavy duty pain killers, which manage to take the edge off the pain. I shudder to think what the pain would be like without them.
Looking on the bright side, my poultry interests continue, so does my web site building. Having just experienced the wettest period I can remember here (two months sold rain and wind), we are hoping for a decent summer, fingers crossed.
My Health (update Summer 2008)
The tuberculosis infection treatment is now at an end (as of July 2008). The medical staff at Inverness hospital were extremely professional and insisted on the full nine months of treatment which I completed (not without complaints). I just hope that is the last espisode of tuberculosis I have to cope with, fingers crossed anyway. My depression and gloom has now lifted and I guess the summer did help, sunshine and the longer days work wonders. So things are just about back to how they were before September of 2007. I just hope it stays that way for a while at least.
My Health (update Autumn 2007)
My health recently took a downward spiral. In late 2007 I mananged to get Tuberculosis which required me to say in hospital for 3 weeks, the treatment for tuberculosis is very long and lasted almost a year. In addition to this I suffered depression and suicidal thoughts which required medical intervention. I was put on anti-depressants for a few months. It did work after a few weeks. Having depression is very common amongst people with HIV and having suffered depresssion before (but not as intense as my bout in 2008) it can be a long haul and should be recogised as a serious illness and medical intervention and counselling sought for support.
For people with HIV it is very important to eat a healthy, varied diet.
HIV infection can cause you to eat less. You may also absorb nutrients less well. That is why many HIV infected individuals are deficient in many vitamins and minerals. This can directly help the virus to multiply and cause further problems. Our bodies are under greater stress with HIV, therefore it is vital that we eat well.
First of all, try to eat as varied a diet as you can. In addition, HIV doctors recommend the following:-
- A multivitamin, without extra iron, twice a day.
- A trace element supplement once a day.
- An antioxidant supplement once a day.
While this may not offer you all of the possible benefits of the high-dose supplementation described below, it should help prevent severe deficiencies. If it s hard for you to eat or to get pills down, or if money is a problem, this will give you a safe, supportive regimen that is easy and inexpensive.
If you want to do more, the following supplements are also recommended:-
- A multivitamin, without extra iron, twice a day.
- A trace element supplement once a day.
- A vitamin C supplement, 1,000 to 3,000 milligrams (as tolerated), once a day; or 3,000 to 6,000 milligrams (as tolerated), once a day during periods of active illness.
- A vitamin E supplement (alpha tocopherol preferred), 800 to 1200 units, once a day.
- A beta-carotene supplement, 15 milligrams (with 25,000 units of vitamin A), twice a day.
- A vitamin B stress complex supplement twice a day. These offer higher doses than an average B-complex supplement. They have a little added vitamin C, to promote their absorption.
- A magnesium supplement, 250 milligrams, twice a day.
- A selenium supplement, 50 micrograms, one to four times a day.
It is best to take any supplements with food.
N.B – All the above take into account the dangers of over supplementing.
Quite apart from the physical symptoms, HIV also has an affect on your mental well-being.
To have a positive result from an HIV antibody blood test is no minor event! You will need counselling, both before and after the test itself. You will also need to learn how to live your life with HIV in a constructive way. Planning for the future with HIV as a backdrop to your life is hard. It requires inner strength, courage and some discipline. For most people in the developed world at least, HIV whilst being a serious and disabilitating chronic illness, is very manageable now.
This does not mean however that everything will always be ‘plain sailing’, it won’t. Feelings of worthlessness are very common, especially when first diagnosed. You may feel that you do not have a future. You may also feel that your sex life has come to an end. Life certainly will not be quite the same again. Knowledge and information is the key to managing your life in a more confident way.
The support and help of close friends and if possible, family members should be sought. There are also plenty of HIV support groups in Europe and the US who can help, where you can meet others affected by the virus. These groups provide vital personal support for all those infected by HIV. Many of these groups will also provide social drop-ins centres, information, befriending services and other personal support that you may need. See the main hiv links section of this site for more information and advice about mental health.
It is very important to get this support if you feel you need it, most are free. Looking after yourself is an important part of learning how to live with HIV. Eating well and getting plenty of sleep helps to reduce stress levels. Friends are invaluable to most of us. When we are HIV+, they are vital. Do NOT have people around you who cannot cope with your status, reducing stress is very important.
Life does exist beyond HIV, you just need to adjust at your own pace. In time, things will become easier and confidence will return.
Many people who have been on antiviral treatment for some years, often experience a condition known as Lipodystrophy.
Lipodystrophy manifests itself in a variety of ways, by interfering with fat redistribution in the body. The more common symptoms are:-
- wasting (sunken cheeks).
- prominent veins in the legs.
- fat pad on back of neck.
- increase of fat in the face.
- breast enlargement.
- increase of fat around the gut.
- lipomas (fatty growth in different parts of the body).
Any of these can be very distressing for the individual. To date their is no firm evidence to show what actually causes lipodystrophy, however HIV itself and prolonged antiviral treatment for many years are both thought to contribute to this condition.
These changes in body shape are sometimes accompanied by changes in lipid (triglyceride and cholesterol) levels and insulin resistance, which is associated with an increased risk of heart disease and diabetes
Treatment of lipodystrophy is difficult and rather random both in its success and availability. The treatments on offer range from liposuction (removal of body fat) to a very new treatment of injections with polylactic acid (New-Fill) for facial wasting.
I can’t finish this page without thanking all the doctors and nursing staff at North Manchester General Hospital, Ed Wilkins my HIV Consultant, Norma Turner my HIV nurse and Marsha Myers, who was my ‘HIV buddy’ for while, who is still a very close friend and taught me how to laugh again. Also, not forgetting Jay Clarke my masseur and counsellor back in Manchester.
I returned home from a grueling 3 week spell in Inverness hospital during late 2007. The diagnosis seemed to be non-pulmonary TB. Symptoms ranged from night sweats and fever and joint pains. Non Pulmonary means not affecting the lungs. In the early stages an oral pill treatment was administered which lasted for 6 months to get rid of the bacteria.
Tuberculosis is a chronic, recurrent infection that most often causes pulmonary disease, but it may also result in extrapulmonary disease, particularly involving the pleura, lymph nodes, genitourinary tract, skeleton, meninges, peritoneum, or pericardium. Tuberculosis is caused by infection with mycobacteria, most commonly Mycobacterium tuberculosis and M. bovis. Diagnosis of tuberculosis, especially non-pulmonary tuberculosis, may be difficult and a high index of suspicion is required in order to avoid delays in diagnosis.