HIV Health
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.
HIV/AIDS and Me
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 antiretroviral therapy, now for nearly 11 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 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 the 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 am doing well on this latest regime, with no really bad side effects. My latest blood count taken in August of 2007 showed my CD4 count at a level of 500, this was coupled with a continuing undetectable viral load. 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 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.
My Current Health
My health has recently taken a downward spiral. Recently I mananged to get Tuberculosis which required me to say in hospital for 3 weeks, the treatment for tuberculosis is very long and still continues for me. In addition to this I am now suffering depression and suicidal thoughts which have required medical intervention. Currently on my first course of anti-depressants, which will probably last a few months assuming the chosen drug works, if not I will no doubt be put on another and see how that goes. Having depression is very common amongst people with HIV and having suffered depresssion before (but not intense as my current illness) it can be a long haul and should be recogised as a serious illness and medical intervention and counselling sought for support. Will keep those interested by posting on my progress hopefully again before too long.
Diet and Supplements
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.
Mental Health
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.
HIV and Lipodystrophy Syndrome(s)
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.
HIV/AIDS and Tuberculosis
I have recently returned home from a grueling 3 week spell in Inverness hospital. The diagnosis seems to be non-pulmonary TB. Symptoms ranged from night sweats and fever and joint pains. Non Pulmonary means not affecting the lungs. I am in the early stages of oral pill treatment which will last 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.
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