My HIV (Human Immuno-deficiency Virus) viruses cleverly evolved immunity to the pharmacopoeia of HIV drugs. On 2013-06-14 I applied to join a experimental drug trial of a new integrase inhibitor made by Glaxo Smith Klyne called dolutegravir. The drug is not yet approved by Health Canada or the FDA (Federal Drug Administration). On 2013-07-24 I got my new drug cocktail.
|Roedy’s HIV Drugs|
|Dolutegravir||twice daily||small plain white 50 mg tablets||integrase inhibitor||experimental|
|Truvada||once daily||dark blue tablets, 500 mg||combination. emtricitabine 200 mg (nucleoside)
tenofovir 300 mg (nucleotide analogue reverse transcriptase inhibitor)
|Darunavir||twice daily||large bright coral tablets, 600 mg||protease inhibitor||$625|
|Ritonavir||twice daily||white rectangular tablets that smell of coconut. 100 mg||protease inhibitor||$87|
If my bugs develop immunity to this cocktail, there is nothing else to try and unless some new drug came I would be a gonner. Ritonavir I have had before. It causes extreme nausea and diarrhoea. It smells like gasoline. The new version is supposed to be much easier to tolerate. I have had Truvada before. It is reasonably tolerable. I have never had Darunavir before. It is a protease inhibitor. That class of drug causes lipodystrophy.
I have been coping with HIV since the summer of 1985. Drugs are keeping me alive though I still have severe problems with nausea, fatigue and diarrhoea and minor ones with neuropathy (numbness) and liposdystrophy (fat distribution). On 2013-07-01 by T4 level was .21, pretty low, but I had been on a drug holiday for a few months month or so, while the new cocktail was arranged. On 2005-11-29 my HIV viral load was undetectable and by Cd4 ratio was 0.41. Anything above 0.2 is considered acceptable, so on that front I am doing fine. It has stayed undetectable every since. I am not about to die anytime soon.
The most cheerful thought to someone with HIV is that Big Pharma has a vested financial interest in keeping them alive. The most depressing is if someone ever marketed a cure for HIV, it would destroy the immensely profitable HIV drug industry. Big Pharma would fight it tooth and nail.
I became HIV+ in the summer of 1985. I met a muscular handsome black man named Ray H. in San Francisco. I thought, Here he is finally, Mr. Right. He wanted to play dice with his friends then come home with me. I thought to myself, do I really want to get involved with someone who gambles? I said to myself, if he does not quit on the next throw, I’m going home. He won and the next throw and we went back to his place. So literally my HIV status depended on a single throw of the dice. We spent a delightful night of versatile unprotected sex in his circular bedroom with windows on all sides overlooking San Francisco. It never occurred to me that someone so healthy-looking could be carrying the virus. I later learned he had a lover with AIDS (Acquired Immunodeficiency Syndrome) and I went immediately for a test. It was negative. I learned a great deal about HIV and AIDS from the San Francisco health department and then had no unsafe sex after that. I had a short flu-like conversion illness with profusive sweats, which I shrugged off as flu. Two years later, I went to my GP complaining of nausea. She did an HIV test and this time it came back positive. The moral: HIV is not like baseball, its one strike and you are out. There are no warnings and no second chances. I contracted HIV from a single unsafe encounter.
I have lost most of my friends to AIDS and two of my lovers. I’m hoping to find another HIV + lover who would enjoy me massaging him.
Even though there are reasonably good HIV drugs now, having HIV is still a major pain in the ass.
The picture in the upper left corner represents one day’s medications. To get an idea of actual size, the six orange pills are the size of jelly beans. The table below is out of date. My prescription changed several times since then as my HIV became immune to the various drugs. Now they are immune to all drug cocktails so I take nothing, awaiting something new to be released.
|Image||Drug Name||Daily Dose||Why||Notes|
|Kaletra, aka ABT-378/r, Lopinavir+retonavir||4 pills x 2||HIV protease inhibitor||Contains lopinavir and retonavir. Easier on the stomach than pure Retonivir. Pills look like orange jellybeans. Must be kept refrigerated. I take 4 instead of 3 pills because Nevirapine inhibits ABT. Causes nausea, weakness, depression, lipodystrophy..|
|1 pill x 2||HIV NNRTI (Non-Nucleoside Reverse Transcriptase Inhibitor)||Pills are large white cylinders.|
|1 pill x 2||HIV NARTI (Nucleoside Analog Reverse Transcriptase Inhibitor)||Causes neuropathy, numbness in the feet, much as if I had been out skiing. I was originally on a D4T/3TC cocktail but my bugs became immune to it. For reasons I don’t understand, D4T has been kept part of my new cocktail. Comes in brown gelatine capsules. Causes neuropathy.|
|1 pill x 2||HIV NARTI||I was originally on a D4T/3TC cocktail but my bugs became immune to it. For reasons I don’t understand, 3TC has been kept part of my new cocktail. The pills are tiny white diamonds, unlike some other HIV medications that are elephant sized.|
|300 mg 4 pills x 1||manic/depressive bipolar disorder||Quite hard on the stomach. Take all at once in the evening to reduce kidney damage. Comes in pink and white gelatine capsules.|
|Pill||Drug Name||Daily Dose||Why||Notes|
|Pepto bismol||1 pill x 2||nausea||Helps with nausea from taking HIV medications.|
|multiple vitamin||1 pill x 1||boost immune system||Alive Super One Plus. Whacking giant pills quite hard to swallow, slow release. I have trouble holding down vitamins without the slow-release feature.|
|glucosamine sulphate||500 mg 1 pill x 2||rebuild cartilage||Recommended my a chiropractor to help my worn disc back problems. I’ve been pain free ever since.|
|Vitamin C||500 mg 1 pill x 2||boost immune system||The Inter-Cal company kindly sent me a whole case of Ester-C as a gift. It is not acidic like the usual Vitamin C, so they are gentler on the stomach. If you try to chew them, they taste terrible. They also contain calcium.|
|Immodium||1 pill x 1||diarrhoea||Works best if taken late at night. Takes several days to kick in.|
|Pill||Drug Name||Daily Dose||Purpose||Why I Don’t Take It|
|150 mg 1 pill x 2||nausea||I was treated with Ganciclovir IV for three weeks to clear up CMV (Cytomegalo Virus) ulcers in my stomach, but that still did not stop the nausea. Zantac are white pills that look like large aspirins.|
|5 mg 2 pills||nausea||It works indirectly because it gives me a Starbucks coffee-like buzz which energizes and stops me from moping about focusing on the nausea. Nausea is improving. I am very nervous about this drug. It is quite an upper and it was an abused street drug in the 70s. Pills look like small orange hearts with a split line.|
|1 pill x 1||nausea||Works reasonably well. Other things I tried such as Gravol and ginger did not work. Pills are small, round and orange.|
|2 mg 1 pill x 1||neuropathy||It is supposed to help the numbness in my feet caused my D4T. Does not appear to help much. Pills are small and a very pretty robin’s egg blue.|
|AZT||1 pill x 2||HIV NARTI||Could not hold it down.|
|1 pill x 2||HIV NARTI||Gave me terrifying nightmares. Hard to hold down.|
|1 pill x 2||HIV NARTI||Gave me terrifying nightmares. Hard to hold down. (It was quite a while ago, and DDI (Didanosine) and DDC (Dideoxycytidine) are muddled together in my mind. One of the two came as giant disks you had to dissolve in water like Alka-Seltzer to create a disgusting drink. )|
|Ritonavir||small glass full||HIV protease inhibitor||Tastes like gasoline. Hard to hold down. Made me sleepy, weak and nauseous.|
|1 pill x 2||HIV protease inhibitor||Was part of a cocktail I was on for a short time. It seemed to work fine, and was easy to tolerate. I guess Dr. Montaner is saving it for the future.|
|1 pill x 2||HIV NARTI||This stuff just about killed me. I have never been so sick in my life. Some people die from the allergic reaction.|
|Penicillin||1 pill x 2||infections||As a child my Mom punished us by having Dr. Sharpe inject us with penicillin. As a result I developed an allergy. My hands and finger swell up so that I can barely bend them.|
|anti psychotic||I was given Haldol in 1977. It made my tongue swell up so that I could not breathe. It was one of the most terrifying experiences of my life.|
|1 pill x 2||diarrhoea||Did not work.|
|nausea||Yes, I have a prescription. The catch is there is no legal way to fill it. Pot is the only thing that truly works on my nausea. Unfortunately I can’t get anything accomplished while under its influence, so it is not suitable for continuous use. It also irritates my lungs giving me a cough. I no longer use it. During the worst days, it was nice to be able to look forward each day to a few hours of freedom from nausea. I wrote an essay on marijuana, among other things defending its medical use.|
|1 pill||Antidepressant||Calming. Suppresses sex drive. Slightly effective in lifting depression.|
|1 pill||Antidepressant||Did not have any effect.|
|100 mg 1 pill x 1||PCP (Pneumocystis Pneumonia) prophylaxis||For PCP prophylaxis. Pills are large white cylinders easy to confuse with Nevirapine.|
|prostaglandins||3 injections per week
no more than once a day
|impotence||Injected into the 10 or 2 o’clock position on the penis. I used a spring loaded device called a PRO-ject to hold the syringe that does the injection quickly and completely painlessly. Only a microscopic amount (0.1 to 0.4 ml) is injected through an extremely fine needle. HIV wiped out my sex drive totally for about a year. With the HIV cocktail first my mental horniness returned, and gradually my plumbing is starting to work again. See my personal story in the gay glossary under Canadian Men’s Clinic, impotence, prostaglandins and Viagra. This stuff is bloody miraculous. It is even better than Viagra. I am celibate now, so I don’t use this anymore.|
|gym||1 visit x 1||To improve insulin sensitivity, protect the heart against elevated blood fats, restore wasted muscles, improve strength.||I was going to Fitness Quest in New Westminster every day. I have not been since 2001-02 since just felt too rotten. I have gained weight and felt even worse. I alternated weights and cardio on the Stairmaster. It improved stamina and mood. I could not see much difference in my appearance, other than my legs which now look normal again, though my sister said I look fitter. Customers who had not seen me in some months said they did not recognise me I was so much more trim and fit. So I guess the gradual effects do add up. The particular gym I use is not fancy, no dancercise or whirlpools, but it is nearby and the staff are friendly. They greet me by name. The other people exercising there like to talk to me.|
|Pill||Drug Name||Daily Dose||Purpose||Why I Don’t Take It|
|glutamine||5 grams x 3||Supposed to help with muscle wasting and diarrhoea.||Too expensive. White gritty powder that tastes vaguely reminiscent of meat juices. Many products contain small amounts of glutamine with tons of filler such as whey powder i.e. powdered milk and energy boosters, i.e. sugars. If you wanted whey and sugar, there are much cheaper ways to get it than $100 a can! I bought the pure pharmaceutical grade stuff. Just started so I have no opinion yet. 5 grams is about 1 ½ teaspoons. I use a Braun hand blender to mix it up with orange juice and half a banana to form a reasonably palatable drink. I have been full of energy since I started taking it. I have no trouble working from the moment I get up till well after midnight without a break. I’m more often in a calm happy mood than before as well.|
|creatine||1.5 grams x 3||Supposed to help rebuild muscle mass.||Too expensive. White gritty tasteless powder. 1.5 grams is ½ teaspoon. All comments about glutamine apply to creatine.|
|Coenzyme Q10||30 mg x 2||energy.||Too expensive. This is one of the body’s natural energy transmitters. I wonder if these small quantities can make much difference.|
|phosphtidylserine||100 mg x 2||energy.||Too expensive. Supposed to help with neuropathy. Some concern it may metabolise HIV drugs too quickly.|
|CLA (Conjugated Linoleic Acid)
|1060 mg x 4||Supposed to help rebuild muscle mass.||Too expensive. Combating lipodystrophy. CLA supplementation was shown to improve the lean mass to body fat ratio, decreasing fat deposition, especially on the abdomen and enhancing muscle growth. To achieve this, CLA reduces body fat is by enhancing insulin sensitivity so that fatty acids and glucose can pass through muscle cell membranes and away from fat tissue. This results in an improved muscle to fat ratio. Some sources say you need about 7 grams a day. No noticeable changes may occur for six weeks, then change may be rapid after that.|
|Qi Gong herbal medicine||nausea||This worked. It tasted awful. You have to brew a foul black tea with a potful of twigs, mushrooms, moss, oyster shell and lord knows what else that was in the giant grocery bag of herbs he gave me. Unfortunately, Master Sha, who concocted the brew, is no longer in my city. Otherwise I would repeat it.|
|impotence||I tried Viagra, buying at inflated prices on the web and a 100 mg dose works perfectly. prostaglandins are much cheaper. I am celibate now so I am not using either.|
|protease paunch treatments|
|liposuction||To deal with protease paunch. Recovery is 3 days. Cost is $3000 to $8000 CAD. It often must be combined with surgery to tuck the loose skin created. Cost is|
|fish oils||Supposed to help with protease paunch.|
|DHEA||DHEA stimulates production of human growth hormone, which helps counteract the lipodystrophy side effect of protease inhibitors. Supposed to help with general and sexual vigour. Buying it legally in Canada is a major hassle, requiring your doctor to get permission from Ottawa to prescribe it for you, but some places reputedly sell it under the table. I could not find any. Reference ??|
I later learned that you must brush twice a day, once after breakfast and once just before going to bed. You must not eat or drink anything except water, not even coffee after your final brushing. I strongly recommend a Sonicare toothbrush since it keeps almost all the plaque off your teeth above the gum line. When you floss, gently saw back and forth to get the floss between your teeth. Don’t snap it down onto your gums or that will cause permanent gum recession.
The more you can keep the bacteria down in your mouth, the less you swallow and the less strain you put on your immune system. I also learned that you should discard your toothbrush when you get sick to avoid reinfecting yourself.
The only thing that works well was carefully avoiding anything with wheat or gluten in it.
If ever I take antibiotics, to restore the destroyed intestinal flora, I take probiotics. .
I have found oranges and apples, much as I like them, make it worse. The natural corking food I found most effective is rice. For some people home-made white bread also works. Over-the-counter Immodium is the most effective medication. Pepto-Bismol helps with the discomfort, but does not seem to stop it.
Lacotose-free milk with added lactase helps.
Yogourt with pro-biotic bacteria seems to help a little.
Diarrhoea combined with gas is a deadly combination. Beano helps reduce the gas.
If things get really bad, try a Depends pad for men with straps. They will rescue you from small accidents. Make sure you carry a couple of clean ones with you.
Giving up orange juice, my favourite food, helped a lot. Colostrum also seems to help. Home-made yogurt also seems to help.
I suspect blueberry, pickles and oatmeal help.
This sounds counter-intuitive, but try raisin bran. It absorbs water, retards flow and dilutes whatever is irritating the bowel.
Giving up more than one vitamin C fizzy drink a day.
adding a splash of pomegranate juice to my drinking water.
avoiding bread and bagels
Lots of fruit, blackberries, cantaloupes, apricots, cherries — the opposite of the usual advice. Perhaps you need to replenish some enzymes.
If whatever you are doing is not working, try something else, even if that something else failed earlier. Even if you can’t get on top it permanently, you can often get relief for weeks at a time.
If you start feeling faint and wondering if this is your last day on earth, you have got dehydrated. You seen some Gatorade or rehydration salts, or in a pinch, any salty food such as chicken noodle soup.
Diarrhoea went from making life unbearable to gone in a week in2002-07, to come back later. I am still trying to figure out what fixed it. The two most likely explanations are Keflex, an antibiotic I had to take to prevent infection after surgery and vitamin B12 injections for HIV anemia and overly large red blood cells. One other possible explanation is Effexor, an antidepressant. I notice that fear, panic or worry always made the diarrhoea even worse. Possibly ginseng extract did it. And one final explanation, I ate large numbers of wild blackberries and had them for breakfast each morning. It did eventually return.
The CDC (Centers for Disease Control) says more serious cases of diarrhoea can be caused by viruses (such as rotavirus), bacteria (such as salmonella or campylobacter), parasites (such as Giardia lamblia) and microorganisms (such as E.coli).
If you lose weight or feel like death warmed over from diarrhoea, you are probably dehydrated. You can replace your electrolytes with Gatorade drink or a powder such as Gatorade, Pedialyte or Gastrolyte. These are all expensive. You can make up your own ORT (Oral Rehydration Therapy) like this:
I need more oxygen and more circulation to help flush out the lactic acid, a natural byproduct of muscle exertion. Yet I feel like shit, so am not up to cardiovascular exercise. There are some vitamins reputed to help. Co-Q10 is the most expensive, but the most useful. Vitamins B1, B2 and B15 are reputed to help. Others suggest including C, E and the usual BS, especially sublingual B12. One source suggested l-carnitine but for some reason, it is illegal in Canada. It is not toxic. Your body’s synthesises it from a pair of amino acids: lysine and methionine. It occurs naturally in dairy products, avocados and lamb, beef and other red meats. It helps with fat metabolism.
Just getting outside for a short walk helps. What I am going to have to do is force myself to gradually exercise more and more and eventually get back to gym-level cardio exercise. I am also trying to improve my diet, upping the amount of fresh food. However, I have little energy for shopping or food preparation. The other possibility is to switch to some other drugs that don’t have this effect. Unfortunately there is only one left, Saquinavir, that I am not violently allergic to. In times when I have gone off all drugs, I suddenly felt much better, so I know the drugs themselves really pull my energy down.
First, you have to keep your immune system up by all non-drug means you can think of such as:
You might try to befriend as many people as you can on the Internet. At some point you could then approach them for a contribution toward the cost of the drugs needed to keep you alive. You could ask them to send you the drugs rather than money so they won’t think you are just scamming them. Investigate buying the drugs in various countries and on various black markets. You still probably could not afford a full five-drug cocktail, but even a one-drug Nevirapine regimen is a lot better than nothing.
No matter what you do, in all probability you will still die young. Don’t waste the time you have left moaning or regretting the past. Get on with what you think is most important.
Perhaps we could have a compromise where drug companies were permitted to put an adjective either always before or always after the standard generic name.
Every last one of my friends who got HIV died. Somehow I hung in there long enough for this miracle, that could easily keep me going another 5 years or so.
I think the reason I survived is because I have always had a strong life purpose. The planet just needs so much work done. I just could not die and leave it undone.
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