Coping with HIV : Gay & Black Glossary

Current State

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.

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.

How Could I Be So Stupid?

1. AIDS was caused by recreational drug abuse. Why else was it an American problem and not in Canada. When I visited the USA and saw the extreme drug and alcohol abuse that seemed plausible. In San Francisco alcohol is sold on every corner. The strongest drug I took was coffee, so I was safe.
2. AIDS was caused by poppers (amyl nitrate). I did not take them; so I was safe.
3. People who had AIDS looked like Biafran famine victims. I did not have sex with people like that, so I was safe.
4. AIDS was typical American hysteria. They were always overreacting. A few years earlier it was "killer gonorrhea".

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.

Prescription Drugs I Take

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.

HIV Drugs

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..
	Nevirapine Viramune	1 pill x 2	HIV NNRTI (Non-Nucleoside Reverse Transcriptase Inhibitor)	Pills are large white cylinders.
	D4T Stavudine Zerit	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.
	3TC Lamivudine Epivir	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.
	lithium carbonate lithane	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.

Non Prescription Drugs I Take

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.

Prescription Drugs I No Longer Take

Pill	Drug Name	Daily Dose	Purpose	Why I Don’t Take It
	Ranitidine Zantac	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.
	Dexedrine dextroamphetamine	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.
	PMS/Perchlorperazine Stemetil Phenothiazine	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.
	amitripyline elavil	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.
	DDI Didanosine Videx	1 pill x 2	HIV NARTI	Gave me terrifying nightmares. Hard to hold down.
	ddC Zalcitabine	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.
	Saquinavir Invirase	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.
	Abacavir GW-1592 Ziagen	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.
	Haloperidol Haldol Miltown Serenace Halperon		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.
	Lomotil diphenoxylate atropine	1 pill x 2	diarrhoea	Did not work.
	marijuana Cannabis sativa pot		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.
	Paxil paroxetine hcl	1 pill	Antidepressant	Calming. Suppresses sex drive. Slightly effective in lifting depression.
	Zoloft sertraline hydrochloride	1 pill	Antidepressant	Did not have any effect.
	Septra sulfatrim Bactrim	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.

Non Prescription Drugs I No Longer Take

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) CLA	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.
	Viagra sildenafil citrate		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.

Procedures and Drugs I Want To Investigate

Drug/Procedure	Notes
protease paunch treatments	Book referral for Syndrome X: Overcoming the Silent Killer That Can Give You a Heart Attack recommend book⇒Syndrome X: Overcoming the Silent Killer That Can Give You a Heart Attack by Dr. Gerald Reaven, with Terry Kristen Strom and Barry Fox 978-0-684-86862-2 hardcover publisher Simon & Schuster 978-0-7432-1899-3 eBook published 2000-03-14 Protease inhibitors cause insulin resistance which in turn causes the fat to move from my legs and arms to my paunch (lipidystrophy). Its not that bad, but I am super sensitive about it since it is one more thing that interferes with getting laid. Online bookstores carrying Syndrome X: Overcoming the Silent Killer That Can Give You a Heart Attack abe books anz abe books.ca abe books.de amazon.ca amazon.de Chapters Indigo amazon.es Chapters Indigo eBooks iberlibro.com abe books.com abe books.fr amazon.com amazon.fr Barnes & Noble abe books.it Nook at Barnes & Noble amazon.it Kobo junglee.com Google play abe books.co.uk O’Reilly Safari amazon.co.uk Powells other stores Greyed out stores probably do not have the item in stock. Try looking for it with a bookfinder.
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 ??

Medical Problems

• nausea.
• neuropathy (numbness) in my feet and lower legs.
• double vision, e.g. I sometimes pour water from the kettle beside my cup.
• depression.
• problems with ducts in anal glands (like a dog!).
• impotence.
• diarrhoea.
• fungus/yeast infections. I’m told Vic’s Vaporrub works, but I have not had success.

Oral Health

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.

Nausea

1. Avoiding anything containing wheat or gluten made a major difference.
2. Candied ginger gives temporary relief. Fresh ginger works even better. Powdered ginger in coffee works to some extent. Gravol produces pills and lozenges containing ginger that work, but are a rather expensive way to get ginger. Regular Gravol is useless.
3. Marijuana is the only thing the really works well. However, it also makes you stoned and using it could land you in jail.
4. Stemetil is the best drug I have found. Ordinary Gravol is useless.
5. Getting various stomach problems cleared up like CMV, campylobacter, amoebas and ulcers helped. You need a gastroscopy and stool samples to diagnose these problems. A simple antibiotic can sometime clear up or ameliorate a long-standing problem.
6. Trying different HIV drugs helped. I tried quite a few before settling in on these ones.
7. Sometimes just giving into whatever food craving you have works. For example, ginger ale sometimes works.
8. Potato juice gives about 30 minutes of relief even for severe nausea. It tastes disgusting. You make it by putting a potato through a juicer. You can make it more palatable by mixing it with other vegetable juices or fruit juices.
9. Qi Gong Chinese herbal medicine. This worked quite well even after the treatment was completed. You boil up pots full of herbs, oyster shells, mosses and various things without a name to create a foul tasting black liquid.
10. Yellowroot is a twig that grows in swampy areas in Alabama. You can brew the yellowy wood into a bitter tea. It is very cheap. For me, it causes instant vomiting.
11. Cold fresh air helps. Take a walk outside, or just open the windows wide.
12. Getting dehydrated, especially from exercise or vigourous sex can make you nauseous. Gatorade is a quick way to replenish the lost water and salts. The cheapest way to get in is by buying the powder and mixing it up a litre at a time.

• Tell yourself, When this is finished, I will feel much better on an empty stomach.
• If you are overweight, tell yourself, At least I will lose a little weight.
• There are people who perform tricks swallowing balls and other objects and regurgitating them on demand. Vomiting is no big deal. It is just reverse swallowing. It does not mean you are about to die.
• If you try to vomit, you can get the dry heaves and eventually bring up whatever is giving you trouble. Eventually you gain something approaching voluntary control, which is much less distressing than feeling your body is running out of control vomiting you.
• To help convince yourself vomiting is no big deal, see if you can read something while you are vomiting. You would be surprised how much of the distress of vomiting is just the effect of panic.

Diarrhoea

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.

Greek-style yogurt

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.

Tums

cinnamon

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:

ORT Recipe

• one level teaspoon of salt, preferably sea salt or half-salt (half potassium chloride). The ideal ratio is 1/3 potassium so you might add a little ordinary salt to your half salt. Don’t oversalt. The final mixture should taste no saltier than tears.
• One level teaspoon of sodium bicarbonate (baking soda).
• eight level teaspoons of sugar, glucose or honey.
• one litre of clean drinking or boiled water and then cooled. This makes 5 cupfuls (each cup is about 200 ml.)
• Something to flavour it such as concentrated orange juice. It tastes pretty disgusting plain.

Lactic Acidosis

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.

Third World

First, you have to keep your immune system up by all non-drug means you can think of such as:

• Korean red ginseng. Beware, many products purporting to contain red ginseng do not.
• aloe
• selenium
• vitamin supplements
• fresh fruits and vegetables. Consider vegetable/fruit juice as a way of getting your quota. These take energy or money to prepare, but they work better than anything else for boosting energy.
• exercise
• scrupulous sanitation
• whatever keeps you optimistic and energised.

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.

Smoothie

Ingredients include:

1. about half a litre of cold water
2. Emer’gen-C effervescent Vitamin C packet
3. scoop of Nu-Greens Berrysplash
4. scoop of Greens+ Multi+
5. Frozen mixed fruit e.g blueberry, strawberries, raspberries, blackberries, peaches
6. banana
7. two shakes of ginger powder
8. small container of probiotic yogurt

Rant

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.

Hallelujah

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.

Links

• See also Index of Drug Companies.
• Safe Sex, risks of various activities quantified.
• Gay Glossary, definitions of terms in this document that may be unfamiliar to you.
• HIV Education an open letter to the ministries of health.
• AidsMeds.com. News on AIDS medications.
• About.com. All sorts of HIV related links.
• More Than You Wanted To Know about Diarrhoea

Rings