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Who is Cosmo? In my personal set of beliefs Cosmo is a representative of Infinite Knowledge. His brain is actually the universe and thus when asked a specific question he can answer it. Cosmo warns of only one thing I am bound to an honest answer, thus, Do not ask a question unless you can accept the answer. |
Okay, I have no idea what people really want to know about me or about life with HIV. So I'll let you ask me. Don't be shy, the only stupid questions are the one's that are never asked. I promise to answer honestly and as completely as I can. If I don't know the answer I'll tell you so. If I can I will try to point you to someone who does know or try to find out myself.
Now, I realize opening myself up for questions will get allot of you mischievous types
out there to send me questions like "Why is the sky Blue?" or have some try to
embarrass me or get really personal. Fine! You can ask anything. You may not get an
answer. Unlike Cosmo, I do not posses Infinite Knowledge. I'll do my best and I'm rarely
embarrassed (I did say rarely). If its a really personal question I may answer you
personally or I may not answer at all.
Please address questions as "Questions" or "?" so I can find them
easier. Send A Question
I've heard stories about people getting HIV from needles left in movie seats or gas pumps. Is it really possible to get HIV from a needle stick?
NO. This is an Urban legend with no basis in fact (more information follows).
But wait! You do recall that HIV can be transmitted in IV drug use or even 'dirty' tattoo needles, that is a needle stick.
Here is the difference.
A needle
handed from one person to another during drug use (or in the rare cases
of tattoo needles) is fresh out of the blood stream and headed directly
into another blood stream.
HIV is actually weak compared to other virus's when it comes to
surviving out of the body. It dies in seconds when exposed to air and
if there is no fluid, it is also dead. (There is a general rule of
thumb in 'Universal Precautions' - If it's wet, it's dangerous. Meaning
that dried blood or semen on a floor or wall has no danger of HIV
infection. Stronger blood born virus's such as Hepatitis is much more
likely).
Granted, HIV may live longer when it is in the barrel of the needle,
but it still must have something inject that fluid into a blood stream
for infection (merely being 'stuck' with the needle only exposes you to
the outside of the needle, not the contents of the barrel). A needle
'stick' very rarely transmits HIV even in the medical industry where
accidents happen.
PS - you can't test a needle for HIV. Maybe the blood or fluid in the needle, but not the needle.
Here is some information from snopes.com about this Urban Legend and where it came from.
Claim: AIDS-infected blood is being injected into unsuspecting moviegoers and young people dancing in bars or at raves.
Status: False.
Examples:
[Collected on the Internet, 1998]
Warning - MUST READ
Be careful the next time you go to a cinema. These people could be anywhere!! An experience of a friend of my brother's wife left me speechless. Please do send this out to everyone you know. This incident occurred in Bombay's Metro cinema (Among the best in town).
They were a group of 6-7 College girls & they went to the theater to see a movie. During the show one of the girls felt a slight pinprick but did not pay much attention to it. After sometime that place began to itch. So she scratched herself and then saw a bit of blood on her hands. She assumed that she had caused it. At the end of the show, her friend noticed a sticker on her dress and read the caption. It read "Welcome to the world of AIDS". She tried to pass it off as a practical joke but when she went for a blood test a couple of weeks later (just to be sure), she found herself HIV Positive.
When she complained to the cops, they mentioned that her story was one of the many such cases they had received. It seems the operator uses a syringe to transfer a bit of his/her infected blood to the person sitting ahead of him/her. A horrible experience for the victim as also the family & friends. The WORST bit is that the person who does it gains NOTHING where as the victim loses EVERYTHING.
So, be careful . . .
[Collected on the Internet, 1998]
PLEASE CHECK YOUR CHAIRS WHEN GOING TO THE MOVIE THEATRES!!!!
An incident occurred when a friend's co-worker went to sit in a chair and something was poking her. She then got up and found that it was a needle with a little note at the end. It said, "Welcome to the real world, you're "HIV POSITIVE".
Doctors tested the needle and it was HIV POSITIVE. We don't know which theatre this happened at, but it happened in Hawaii.
"BE CAUTIOUS WHEN GOING TO THE MOVIES!"
IF YOU MUST GO TO THE MOVIES, PLEASE, PLEASE CHECK!!!!! One of the safest way is NOT sticking your hands between the seats, but moving the seat part way up and down a few times and REALLY LOOK!!!!!!! Most of us just plop down into the seats.
[Collected on the Internet, 2001]
PLEASE READ THIS CAREFULLY! IT MIGHT SAFE YOUR LIFE!
This is happening in Montreal. A couple of weeks ago, in a movie theater, a person sat on something sharp in one of the seats. When she stood up to see what it was, a needle was found poking through the seat with an attached note saying, "You have been infected with HIV." The Centers for Disease Control reports similar events have taken place in several other cities recently. All of the needles tested HAVE been positive for HIV. The CDC also reports that needles have been found in the coin return areas of pay phones and soda machines. Everyone is asked to use extreme caution when confronted with these types of situations. All public chairs should be thoroughly but safely inspected prior to any use. A thorough visual inspection is considered a bare minimum. Furthermore, they ask that everyone notify their family members and friends of the potential dangers, as well. Thank you.
The previous information was sent from the Regina City Police Department to all of the local governments in the Saskatchewan area and was interdepartmentally dispersed. We were asked to pass this to as many people as possible. This is very important! Just think you could save somebody's life, just by passing this on. Please take a Couple of seconds of your time and pass this on. Thank you for your precious time and consideration!
[Collected on the Internet, 2002]
HIV Warning
A few weeks ago in a movie theater in Melbourne a person sat on something that was poking out of one of the seats. When she got up to see what it was she found a needle sticking out of the seat with a note attached saying... "You have just been infected by HIV".
The Disease Control Center in Melbourne reports many similar incidents have occurred in many other Australian cities recently. All tested needles ARE HIV Positive. The Center also reports that needles have been found in the cash dispensers in ATM's. We ask everyone to use extreme caution when faced with this kind of situation. All public chairs/seats should be inspected with vigilance and caution before use. 17 people have been tested positive in the Western suburbs alone in the last 2 months!!!
A careful visual inspection should be enough. In addition they ask that each of you pass this message along to all members of your family and your friends of the potential danger. We all have to be careful at public places! This is very important. Just think about saving a life of someone even you don't know by forwarding this message. Please, take a few seconds of your time to pass it along.
Origins: The important news first — this isn't happening. In the seven years we've been tracking this legend since its first appearance, no AIDS-laden needle attacks on moviegoers have been reported in Bombay, Hawaii, Dallas, Paris, or anywhere else in the world. We know of only two related incidents, neither of which has proved to involve any deliberate intent to infect an innocent victim with HIV: A Louisiana man sat on a needle in a theater in Baton Rouge in December, 1996, and sued the facility over the incident, but there was no note welcoming him to the world of AIDS or any indication of his contracting any infection. An October 2005 case from Athens, Georgia, in which a woman sat upon a deliberately-placed needle in a darkened theater there (a syringe had been duct taped to the seat), there has been no determination that it actually contained blood, much less HIV.
One of the many versions of this warning claims to be one circulated by the Dallas Police Department. Not only didn't that institution originate the warning, but since its appearance officers there have been kept busy fielding inquiries about this hoax: "It's all false," said Sgt. Jim Chandler, a Dallas police spokesman. "This has not happened, and we would ask people to stop forwarding this message to their friends because it's creating situations where police departments and emergency personnel are having to respond to inquiries to a situation that has not happened." What we have here is an urban legend trading on our fears of catching AIDS. Cautionary tales about hapless bystanders contracting an infectious disease became all the rage in the 1990s. Another such scare has to do with addicts leaving HIV-contaminated needles in the coin returns of pay phones. See our " Slots of Fun " page for more about this related legend.
This particular pin prick story is a version of the better known "AIDS Mary" legend. (In " AIDS Mary ," the "Welcome to the world of AIDS" communication is typically imparted either through a gift emblazoned with that message being left for the victim or found scrawled in lipstick on the bathroom mirror.)
AIDS Mary has been scaring the bejeebers out of us at least since the early 1980s. The pin prick legend, however, isn't all that new either, with the HIV version of it having its roots in an 1989 incident in New York City. The legend in its current incarnation (teenage girls in darkened theaters jabbed with needles) dates back to a much older non-HIV story, one rampant in the New Orleans area in the 1930s. Toothsome young girls were told to beware of Needle Men. Young ladies were strictly instructed to sit at the end of the aisle in movie houses, not in the middle, lest they attract the attention of white slavers working in pairs who would sit down beside the girl, one on each side, inject her with morphine, and carry her out of the theatre and into a life of shame.
The New Orleans Needle Men rumor circulated in another form besides the "white slavers after young girls" — others feared these syringe-armed fiends were in fact medical students harvesting cadavers for dissection. Women jabbed by them would quickly succumb to the poison contained in those needles, with their lifeless bodies soon afterwards delivered to a local teaching hospital. Such deadly attacks were said to take place in theaters, but also on the street.
Though "Needle Man" scares rippled through New Orleans at various times in the 1920s and 1930s, each time sending women into hysterics, there was never any credible reason to believe such men existed. Women weren't disappearing at a furious rate, nor were gals who'd fallen into lives of prostitution afterwards asserting they'd been overcome via injection and abducted.
A slightly different yet inexplicably more frightening version of the pin prick legend began circulating in the early spring of 1998. According to it, young people partying in clubs or at raves run the risk of being jabbed with an HIV-loaded needle and then afterwards finding a "Welcome to reality — you now have AIDS" message stuffed into a pocket or affixed to them by way of a sticker. This warning has so far circulated in Philadelphia, New York City, San Diego, Oakland, Seattle, Toronto, Vancouver, Montreal, Mexico, Australia, Ecuador, and Germany, each time passed along as something that had already happened to others locally: [Collected on the Internet, 1998]
Do you any of you guys like to go clubbing? Well you might want to think twice after this message. Just in case you don't already know, there is a certain group of people with stickers that say "Welcome to our world." Once this sticker is stuck on you, you contract the AIDS virus because it is filled with tiny needles carrying the infected blood. This has been happening at many dance clubs (even DV8 and Beatbox) and raves. Being cautious is not enough because the person just chooses anyone, and I mean anyone, as his/her victim. So you could just be dancing the night away and not even realize the sticker had been stuck on you. It sounds too demented to be true, but it's the truth. In fact my sister's friend knows someone who just recently contracted the virus in this manner. The world isn't safe anymore. Please pass this on to everyone and anyone you know. Wherever this rumor goes, it has a significant impact on the local bar scene. In August 1998 one popular Toronto nightclub estimated its business to be down by 50%. In March 1998 a popular dance club in San Diego was similarly affected when the story swept through there. People hear this story and stay away in droves.
Police in each of these cities have investigated the rumors and found nothing. The clubs named in the rumors similarly report they know nothing of any attacks.
Okay, so this isn't happening in movie houses, at popular dance clubs or at raves. Where did this HIV-loaded needle story come from?
Keep in mind that although there have at various times been random attacks with needles, none have resulted in infection being passed to victims. That part is myth. Now for the truth of it:
For a few weeks in the fall of 1989, a group of Black teenagers (mostly girls) scared the pants off the denizens of New York City by running about jabbing pins into the necks of 41 random white females. Media coverage escalated the general public's fears as it was repeatedly stated the pins were tainted with AIDS. Within a week the kids responsible were found and arrested, and it was at that time police discovered there was no basis to the reports of the AIDS virus being part of these attacks. The hooligans responsible admitted it was just a fun game to them, run up to a white woman, stick her with a pin, see her reaction, then run off.
Possibly inspired by the 1989 panic in New York City, for three weeks in 1990 a Black man terrorized white and hispanic women in that city by hitting them in the legs and buttocks with dart-like missiles fired from a homemade blowgun. More than 50 women were hit in this fashion before the man responsible was caught. When asked why the attacks, the assailant made a rambling statement to the effect that short skirts were immoral and "people from the islands shoot women who wear provocative clothing with darts to punish them . . . they also throw them sometimes into volcano's." (Good thing this nut didn't live in Las Vegas, else the volcano at the Mirage would have been standing room only.)
Kids have since gotten the idea this is a cool game to play. In 1995 a 13-year-old boy brought a hypodermic syringe to Mount Pleasant Area Secondary School (Pennsylvania) and proceeded to jab 28 classmates with it. The boy was charged with aggravated assault, simple assault, reckless endangerment and possession of a weapon on school property and was turned over to juvenile authorities pending a hearing.
In 1997 two teenage lads at Exeter-West Greenwich (Rhode Island) jabbed 32 other students with a medical lancet. Meant to be a "playful prank" (stabbing someone with anything isn't considered playful in my book), the state Health Department took the matter very seriously, ordering blood tests and vaccinations against Hepatitis B for all the victims. The boys responsible were suspended and criminal charges were brought against them.
Earlier in 1997, 18 Lecanto Middle School (Florida) pupils were attacked by five schoolmates wielding lancets. The perpetrators were suspended for ten days and medical tests were run on their victims. Again, it was only a mean spirited prank — no viruses were communicated in the attacks.
Robberies have been carried out by syringe-wielding robbers who claim to be armed with the AIDS virus and willing to stick anyone who gets in their way with the infected needle. It has to be stressed that though various robbers and muggers have claimed to have been so armed, thus far this has never proved out to be anything more than an empty threat. All syringes so employed have tested out as perfectly clean. Even so, it doesn't take a rocket scientist to see that claiming to be armed with an AIDS-tainted needle would generate a lot of cooperation from the people you're trying to rob. Expect to see this "weapon" become even more common as time marches on.
It's not all sweetness and light, however. On 20 May 1999, WBFF/WNUV of Baltimore, Maryland, reported on a midday attack upon an unnamed Towson, Maryland, woman. She had been checking her oil at a gas station when she was approached by a man who asked her for money. The victim described what happened next: I said I didn't have any money. I said I only had a dollar. He said that would do. He put one arm around me and kissed my cheek, he put another arm around me and stabbed me with a needle, and said welcome to reality you have HIV. The victim's description led police to a panhandler known to frequent the area. He was found with a syringe on him. (Click here to read WBFF's report about this incident.)
In January 2000, the attacker earned a three-year prison sentence for his crime. The victim is not HIV-positive.
There has been at least one verified HIV-positive syringe attack of the non -random variety. It happened in Australia in 1990, with the victim being a prison guard at Sydney's Long Bay Jail. Gary Pearce opened a security gate for an inmate known to be HIV-positive and in doing so turned his back for a second. He felt a jab in his buttock. He turned to knock a blood-filled syringe away just as the inmate, Graham Farlow, shouted "AIDS" and ran off.
Pearce rushed to a nearby office where the wound was sterilized. To no avail however. Despite the 1-in-200 chance that a stick injury from an HIV-infected needle would produce a positive result, he tested HIV positive two months after the attack. Pearce died on 30 August 1997 of an AIDS-related illness. Farlow had died in 1991.
This attack plus a spate of supposedly HIV-loaded needle robberies (the robberies at needlepoint were real, but the HIV part was never proved), prompted the Australian government to introduce legislation covering such offenses. Since the victim didn't die within a year and a day of the pricking, the attacker couldn't be charged with murder under the old laws. That changed in 1990. Now robbers using syringes filled with AIDS-infected blood as weapons face up to 25 years in jail in New South Wales state.
British police would like to have something a lot closer to what the Australian legal system provides for. In 1994 they unsuccessfully called for a crackdown on HIV-loaded needle threats, claiming the harm done to victims necessitated both harsher penalties than currently legally available and voicing the need to be able to charge someone in possession of a syringe with carrying an offensive weapon. At present, the psychological damage caused by the threat to inject someone with an HIV-infected syringe is classed in Britain as actual bodily harm, and an attacker can be charged with grievous bodily harm if an injury is sustained. Is that really enough, or are the British police right that this doesn't go far enough?
The AIDS pinprick legend's popularity stems from our fear of contracting AIDS. Even if we take pains to avoid engaging in high risk activities or strive to do so in as safe a fashion as possible, we're all too aware we're still vulnerable, and this legend speaks to that awareness. Though in the early days of this disease, the average citizen felt perfectly safe from its ravages, AIDS is now no longer perceived as something only other people will catch. It's now seen as a danger to all of us.
This sense of being at risk, coupled with ongoing fears of the madmen who walk among us, has given birth to this bit of scare lore. Credibility is further supplied by news stories about kids jokingly stabbing classmates with needles and robbers threatening victims with "loaded" syringes. Mix a bit of truth into an existing bit of scare lore, and it becomes powerful medicine indeed.
The typical college girl victim is a metaphor for us. By casting the one pinpricked as one of tender years, the undeserving nature of the victim is underscored. She's seen as both young and untouched by the world, therefore completely undeserving of this terrible fate. (As, by implication, are we.) Her gender also comes into play as "college girl" is a short form in the world of urban legends for sexual and social innocence. Her fatal infection is made to appear doubly tragic in that it doesn't seem to us, the audience, she would otherwise have come in contact with this illness. Indeed, no more "innocent" a mythical victim could be created.
She's a lot like us, in other words. The terrifying aspect of this bit of scare lore is we see ourselves in her place.
This was from http://www.snopes.com/horrors/madmen/pinprick.asp
Other links with similar information:
http://urbanlegends.about.com/library/weekly/aa061400a.htm
http://urbanlegends.about.com/library/weekly/aa032499.htm
http://en.wikipedia.org/wiki/AIDS_myths_and_urban_legends
Christian Myths and Urban Legends http://www.new-life.net/myths.htm
Hypodermic Hysteria http://tafkac.org/ulz/needles.html
AIDS Myths and Urban Legends http://www.answers.com/topic/aids-myths-and-urban-legends
My Question is about the Concentration
of HIV and how it effects transmission. The Virus can not transmit via spittle
out of body ,but, can during deep kissing or oral sex. I understand that this
is because of concentration of cells containing the virus. Their number is small
in spittle and the virus can not transmit because concentration of cells on
entry point is too small. Also, if spittle would come on open wound, the virus
also wouldn't transmit, but, during oral sex or deep kissing, amount of spittle
increases, it also moves, so there is a chance for a transmission. Is this true
or false?
Second, why the virus can not transmit in water .If someone ejaculates in water,
how is it that virus can't transmit?
And third, again, how much virus live out of body? Can you get answer how much
is it "minutes"? Is it around half hour or is it like few minutes?
Okay, you are laboring under a little bit of a misconception that I hope I
can clear up.
True - spittle or saliva can NOT transmit HIV.
This is not a concentration issue. HIV dies in water and saliva.
Saliva does NOT transmit the virus during deep kissing or oral sex. It is the
BLOOD that may be in saliva that will transmit HIV.
This is where a lot of people get confused. It wasn't helped any with the HIV
Oral swab tests, which lead people once again to believe that HIV was in saliva.
People forget HIV tests do NOT find the virus, they find the Anti-bodies your
body makes in response to the virus.
Saliva is NOT a transmittable fluid for HIV.
Not UNLESS mixed with BLOOD - BLOOD can transmit HIV.
Recent dental work or bleeding gums from poor dental hygiene can be a problem.
Wounds or sores can also be a problem (everything from having bitten your lip
to a cold sore). These transmit the virus because of BLOOD, and the access the
wound gives the virus to your blood stream. Also the mouth is a semi-permiable
membrane which can allow the virus to pass into the blood stream like the tissues
of the nose (or more specifically the sinus cavity), eyes, anus, vagina, and
urethra.
Another way to look at this that might help is that HIV is a VIRUS - it uses
your own cells to manufacture more of itself. Blood is a cell. Saliva is not.
HIV can survive IN a blood cell, but not in Saliva or water.
In a way this also begins to answer your question about ejaculating in water
or a swimming pool.
HIV dies (almost instantly) in water. It may survive in the cells of the semen
for while, but not for long. Water is to harsh an environment for HIV (especially
swimming water with all the other chemicals in it for sanitation like chlorine).
As far as how long the virus lasts outside the body ...
There is nothing that puts a time on it. In general the rule of thumb is "If
its wet, it can transmit."
Thus Dried blood - no HIV. Maybe hepatitis, but not HIV.
Dried semen, vaginal fluids or breast milk - No HIV.
If it is still wet or viscous - there is a chance.
Chance is defined by the fact that only one copy of the HIV virus has to make
it into your blood stream to start using cells to reproduce.
There isn't an issue with the 'concentration' of HIV in a fluid, of how much
survives or dies because all it will take is ONE living copy of the virus to
begin using the cells it now has to begin to reproduce.
I hope this answers your questions. I'm sorry I can't be more scientific with
minutes and seconds of survival outside the body, but there are to many conditions
that may contribute.
I also invite you to view more of my web site dedicated to transmission and
HIV information at
http://www.misfitslife.com/hiv101.
Do you have a medical explanation or recommend any link about this matter?
Please forgive me if this question is so stupid!
Your question is not stupid - I have no solid answer for you though. I only have some
theories.
Transmission and sociology (or culture) would be the contributing causes. As you may or
may not know America is the only part of the world with a disproportionate number of
Homosexual infections. Throughout the rest of the world it is near equally spread across
the population.
Just for those that may not know - you are in a risk group if you have had sex, used
intravenous drugs, or come in contact with infected fluids (like blood or seamen). This is
all the virus cares about, not your age, race, religion, sex or sexual preference. Thus it
is the way people interact within a culture that fills in the rest of the transmission
patterns.
The CDC (Center for Disease Control) identified the original carrier (to the US) as a
Homosexual that traveled extensively. The fact that he was a Homosexual was just chance.
However, because of that, the virus spread first in the Homosexual population. Fifteen to
20 years ago our country held marriage and monogamous relationships in the forefront and
considered Homosexuality a forbidden thought. With this set up, (relatively speaking) only
Homosexuals where having frequent sexual contact with multiple partners that would not
come forward and admit it. This made it difficult to track. Also, because it infected a
group of people in the minority and that was frowned upon - government agencies looked the
other way thinking it would only effect Homosexuals.
In our country it took A LOT of hard work to remove AIDS from the idea that it was
"God's retribution" against undesirables like Homosexuals and drug users.
This ignorance is now haunting us as we now catch up to the rest of the world in infection
rates among women and children. I still find it funny that now infection rates in
Homosexuals is down drastically because we are the most educated against the spread at
this point.
None of this has been proven or documented to my knowledge. The CDC does have a Web Page that may have information on infection rates and the reason for them, but every time I have tried to find anything on their pages I get lost in the Scientific jargon and political overtones.
If you want a more medical reason, there are two to consider. One reason it's more common in gays is that the rectum tends to be subject to tiny tears during intercourse. Thus blood, semen and other fluids are combine providing a rich environment for the virus. (Note, this would seem that you would only be at risk if you where the 'bottom' or the one receiving intercourse in the rectum. THIS IS NOT TRUE.) Second, there are different strains of the virus. Our version of the virus doesn't seem to be present in vaginal fluids as much as the versions in Europe and Africa. This is probably due to the virus mutating in different environments in the different cultures.
The best link I can suggest would be AEGIS.COM because it has a comprehensive library and HIV/AIDS search engine.
I hope I have answered your question, and I thank you for it.
Keep asking, and learning.
I'm fine. When most people ask me this what they mean is "What does the Doctor say?" followed by what does that mean. When I was first diagnosed the T-Cell count was the major factor in charting the progress of the virus (Also known as the CD4 count. It's used because this is the cell most commonly effected by the virus). Now there is also a Viral Load test which is used in conjunction with the T-cells. With T-Cells higher is better (you want T-Cells to go up). My T-cells have fluctuated a lot. I have been as low as 340 something and as high as 760 something. 700 is considered "normal". I have never been normal so it is conceivable I have a naturally low T-cell count and have always been in my average. The Viral Load test actually counts the amount of the virus in the system. It is measured in "repeats per milliliter"(rpml) in the thousands. Thus with the VL test lower is better (you want the VL to go down). I'm told Doctors don't really worry about it unless the count is above 15 or 17 thousand rpml.
See my last count (and the history of counts before it) in this Chart.
So far none of this has actually effected the way that I feel. I'm still healthy and active. I feel fine.
Have you had any side-effects from your medications?
I tolerate most drugs very well. At first I had no side effects that I
could notice. Around Sept '97 I started to have some very uncomfortable (but not
debilitating) side effects. The best I can tell you do is check out my Journals and see how I progress on a daily basis.
A general run down of the side effects I've had (and from what) is -
Acid Reflux, most likely from the Crixivan (which I took an antacid
to remedy).
Neuropathy from (?) the Hivid (ddC - which I'm not taking any more). What
is neuropathy? Basically it's nerve damage. It is in many cases reversible.
Currently my feet generally feel as if they are always 'asleep' and cold. There is a
general tingle and light 'burning' sensation (like a case of athletes foot) and the
feeling that I'm walking on bunched up socks. I'm still trying to reverse this.
Altered mind set, most likely from the Sustiva (which I no longer take).
For the first time I felt a full range of side effects with this drug. Not only did I have
dizzy spells, nausea and 'malaise' - I also had mood swings that leaned toward agitation
and depression. Many of these I was not fully aware of until I was off the drug.
Diarrhea, from the Agnerase. I took Imodium, but it wasn't strong
enough. I took Lonox and the Diarrhea was 'manageable' meaning that I don't have to
bolt for the restroom 90% of the time. Once I stopped the Agnerase, the Diarrhea stopped.
Diabetes, A side-effect of LONG TERM use of medications.
Liver Enzymes and other blood level fluxuations, also a side effect of LONG TERM use of medications.
So far I've been very lucky. I intend to stay that way. My doctor is working with me to rid or ease any symptoms. Nothing has yet slowed me down (much).
Movie - Rosencrantz and Guildenstern are Dead. Tim Roth and Gary
Oldman with Richard Dryfus. If you can find it, watch it. It was originally a play and I'd
like to see it performed someday.
Book - Illusions by Richard Bach. Only book I've ever read more then once
... voluntarily. Unfortunately I don't read as much as I'd like. I have a long list of
books I'd like to read but, no time
TV Show - Lots of those. Trek Fan. X-Files. 3rd Rock from the Sun. I tape
what I watch because I sleep the weird hours. Besides if I watch it, it's worth watching
again. Good shows never die.
Music - Anything but hard core Country and Rap. Alternative probably best
suits my taste. Bands I like: The Cure, The Smiths, Ministry, Skinny Puppy, Red Hot Chili
Peppers, NIN, Enigma, EMF.
Things to do - Write, Draw, Talk with friends, Dance (I'm not good but I
like it anyway), Think.
Holiday - My Birthday and Halloween (and not for the reasons you might
think).
This is a very hard question for me to answer. The Honest answer (and the one people don't like) is I don't really know or care. I have it, I know it, I can prevent the spread from me.
I am not a drug user at all (I have never even drank or smoked) so I know I didn't contract it from intravenous drugs. I am a recent contractor so I didn't contract it from unknowing doctors or blood transfusions. I am a sexually active Homosexual, but I do practice Safe Sex.
So here's the story. I caught my first STD losing my virginity (basically - check out the journals for that sorted story) and learned my lesson early. I practiced safe sex and got tested on a regular basis from then on (sort of). My doctor got a good job elsewhere and left. I wasn't tested for a year or more while I looked for another Doctor. I found one. I was tested for a year before I came to the conclusion that my new Doctor was a Prick! We fought over everything. I then began to look for a new doctor. I was in good health so I was in no hurry. One night two friends of mine came to visit me and say they had gotten their test results back, one of them was positive (no, I hadn't had sex with them - but it did start me thinking about HIV again). I realized I hadn't been tested in nearly two years and found the public health center and arranged for a test. I had no reason to believe it would come back positive but it did. I then contacted everyone I could think of from the last three years. All have tested negative. I do not know who I got it from (and I assume I got it from some one because it is the only high risk activity I am involved with.) and like I said I don't care. For me it has always been about knowing for myself, so I can do my part in stopping the spread, not in placing blame.
3/3/99 - Addition - After going through my Journals (putting them on-line) I found the
time I got sick, which is probably when the virus first invaded my system (Frequently (not
always) the onset of the HIV virus begins with a 'flu'. Some so mild they go unnoticed,
others severe (like mine) that don't seem to respond to normal flu treatments). From this
I think I have been able to figure out exactly when and from who I contracted the virus (if
this flu was actually the onset of the virus). The only flaw in my safe sex practice was
that I substitute Knowing about my partner with Trusting my partner. This was a commonly
mis- taught practice at the time.
I was taught this - "Pretend everyone is HIV+ and don't take a risk you
aren't willing to live with. If you have had extensive talks about each of your sexual
histories and are sure you both have not come in contact with
the virus - then you are okay." It should be (and is more commonly) taught now
"Pretend EVERYONE is HIV+. Don't have unprotected sex
unless you both KNOW you BOTH don't have the virus."
You can have this virus without knowing it. Don't tell someone
you are negative if you have never been tested. Don't tell
someone you are negative just because your last test came back with that result - it
doesn't cover exposure in the last 6 to 8 months.
Don't be sure - Don't trust - Don't think you haven't been
exposed - KNOW IT!
7/31/01 - Addition - Someone asked this question again, so I looked this
over. I should report I looked into that time and those people again. They are
still testing negative, so, I still don't know from whom I caught the virus -
and I still don't care. It is just as likely that I caught it from one of the
many medical patch ups I did as a manager. (I worked with people that used
knives and frequently cut themselves. My hands would have had cuts on them as
well.)
Under any circumstances - I am sure of one thing now - Who ever gave me the
virus, did so unintentionally because they where unaware that they had it - and
still may be unaware of it.
It still isn't about blame. I don't know exactly when or how or from who, and I
don't care. I know I have it, I know how it is spread - I will take all the
precautions that I can to protect my health and the health of any other involved
in a possible risk activity involving me.
A friend of mine asked me this referring to how do I motivate myself.
At the risk of sounding like a sneaker commercial, I just do. I've never really thought about it. That may be why I succeed. Trying to figure out a reason to get out of bed can be depressing. Realizing you just have to get out of bed is the way to go. I don't care whether it's to feed my cat or go to work. I don't need a reason to get up I just do.
I'm not saying it's this easy every day. It isn't. There are days when you just want to give up. Everybody has them. The HIV 'magnifying glass' may make these days harder, but in the long run the same things will motivate you as before. What got you out of bed today? (If you didn't, Why Not?) Same as before. I've always wanted to have something to do. I'm always at a lack of time to do the things that I want. I don't think I'll ever run out of excuses to get up and do something. (If I do, I can guarantee I'll sit there trying to think of some - and that is doing something).
How do people react when you tell them you have AIDS/HIV?
"As with all living things, each according to their gifts." - Spock in Wrath of Khan.
Every reaction I have received has been different. They are different because the
people that react are different. Each one reacts within the boundaries of their education,
compassion, experience and the circumstances around the revelation.
If you want anything more specific - read the journal entries and see how people react.
You will find examples of good and bad over reactions to very casual ones.
I'm often asked this when people are perplexed by my behavior and the reply is Nothing (or at worst Tacos - spicy foods will make me very hyper).
Sometimes this is asked in medical terms. You can check my Journals for near daily updates on this or the Chart I've made. My medications have changed over the years I've been on them. My Doctor and I discuss the advantages and disadvantages of each. I don't know if he takes me seriously when I tell him that if I don't want to take it I won't, but I am the last word about what goes into my body at anytime. People also ask me if medications are a good idea. I try to make informed decisions with my Doctor's help, I hope I am doing the right thing. If you are considering medications (for any reason) talk to your Doctor and make an informed decision.
(actually phrased) What's it like being in the same town as Freddy Kruger Phelps?
(By the way - Just incase you are wondering 'Who?' ... Brace yourself and visit his
homepage 'godhatesfags.com')
Unlike the rest of the world we have gathered up a reasonable tolerance to him, meaning we can ignore him on the streets and generally don't come to any major confrontations with him (generally). By ignoring him we take away his power because what he really wants is to make us mad. We don't however ignore him enough to vote for him when he runs for office (he loses with a resounding slap! every time).
What makes life difficult is watching the innocent go down. I have a friend who spent a month in jail for driving by and yelling he would kill Fred (Fred pressed charges of terroristic threat). I've met the guy that had Fred charge him with hurling a deadly weapon at him (He threw his cigarette butt at Fred's feet). Biggest problem with Fred is that he can very easily anger you into an action you will regret, or make you regret even the most harmless of reactions. He is a master lawyer and will press charges on the most minuscule of things and, if you don't have one of the best lawyers, can spend time in jail (or at the very least go bankrupt trying to win in court appeals). Thus this city holds itself in a state of perpetual check. (Picture this: My Mother (a big 300lb woman) and my grandmother (a frail 90lb woman) are leaving the Civic Theater. Fred is picketing (because we all know that all performers are gay heathens). He said "All fags should die of AIDS" and my mother had just found out about my being Positive. My Mother started to walk toward him and my Grandmother hooked mom's arm with her cane and pulled her away reminding her he wasn't worth the trouble to kill.)
Hmmm ... you know, I've grown up with him. It didn't seem so bad until I tried to tell you what it was like. Now it seems bad but I still believe that we can "Ignore" him into non-existence (The height of mans cruelty is indifference). When he makes us angry he's winning, the trick is to fight him in calm measured tones. Wish me luck.
Yes and No, depends on what you call progress.
Many that say we are making progress are the ones that want you to believe the
epidemic is over because AIDS deaths are down. AIDS deaths are down, because of
the advances in medicine and health care (if you can get it).
However, that means that care programs and resources are being taxed and strained because
there are more people living with AIDS/HIV. There is still no cure, and the
epidemic is just getting started because the rates of new infections is still quite
startling.
We are not making nearly enough progress for the care of those living with HIV/AIDS, or
in halting the spread of the virus.
This is the proverbial "One step forward, two steps back."
I read something about Medications they are using to fight AIDS. Could you explain what they are and how they are working?
The drugs used to fight HIV/AIDS are called Antiretrovirals (Anti-retro-virals : It's a mouth full - and it gets worse). These drugs fall into three different categories, depending on how they work.
Nucleoside Reverse Transcriptase Inhibitors (Nucleoside Analogs or
"Nukes")
This drug mimics one or more components of the HIV's DNA or RNA and interrupts the viral
replication process. They work by blocking the reverse Transcriptase enzyme essential for
viral replication. This terminates the viral DNA chain, halting the replication process
before it is completed.
Protease Inhibitors (PI's)
These drugs block the process by which HIV reassembles itself inside a cell. Specifically,
these drugs disable protease, an enzyme that is necessary for cutting large viral peptides
into smaller, functional units, in order to create active, new viral particles. The
resulting virus is defective and not infectious.
Non-Nucleoside Reverse Transcriptase Inhibitors (NNRTI)
Like the nucleoside analogs, this class of drugs inhibit HIV replication by interfering
with the reverse Transcriptase enzyme for viral replication. These drugs have a different
mechanism of action and a distinct side effect profile from the other drugs.
The 'cocktail' is a combination of at least two drugs (preferably from different groups) to help stop the replication of the virus in as many places as possible.
What is a T-Cell?
Okay, here is a very simplistic overview of what a T-Cell is.
A T-Cell (also known by different names depending on the test you get) is a specific kind
of white blood cell in your immune system that is attacked by the virus. It is kind of the
'General' of the army. It is what tells the rest of the immune system to do - what foreign
agents to attack. With out the T-Cell the rest of the immune system just doesn't know what
to do.
This is why it is used as a monitor for how badly the immune system has been compromised
by HIV (and often in other conditions that compromise the immune system - like
chemotherapy).
In a normal system there should be about 700 to 1000 T-Cells. 500 is considered the low
end of 'normal'. Below that Dr.'s begin to worry. The amount of T-Cells can vary in a
system from hour to hour if you test it that often. They are only a loose indicator -
which is why the Viral Load test became so useful (Viral Load test actually tells how much
of the virus is active in the system).
When someone is telling you about their blood work, remember: T-Cell count - Up (more
generals to direct the army) Viral Load - Down (less of the enemy).
Does a pregnant woman with AIDS / HIV always pass it on to their unborn child? What are the odds?
No, she does not always pass it on to the unborn child. The odds are getting better
(last I heard the odds where - with out medication you pass it to the child with a 1 in 4
chance - with medications it drops to a 1 in 12 chance).
If you are pregnant and HIV+ make sure your Dr. is aware of it. What generally happens is
that the mother will start (if she hasn't already) a cocktail of drugs in the last
trimester to get the viral load as low as possible. The virus isn't passed on through the
umbilical cord - it is passed on during the birth process. Thus by getting rid of as much
of the virus as possible - the child has a better chance of not contracting the virus
during birth.
The next risk factor for the child is then in post-natal care. You can't breast feed for
example. The Dr. will advise you on all the precautions to be taken.
By the way - this is a very new process. There may be some long range problems for the
child from the medications that we have yet to see.
If you're not involved with someone, How would you feel about trying to have an intimate relationship with someone and then telling them you have HIV? (Disclosure)
This is a big and very personal debate for each person having to face it - not only for
HIV/AIDS but for anything that is contagious.
If you read my journals you can see my opinion change slightly from situation to situation
(and over time - it's different now then it was when I began).
Brass tacks Basics - I believe in total and immediate disclosure. That doesn't mean in every day situations, but for anything in which a risk of transmission exists. That also doesn't mean I follow through on it - but I do strive for it.
If you are told by someone that they are HIV+ and you are upset about the timing on it
- ask yourself ... Are you upset because they didn't
tell you - or because you forgot to ask?
Don't put the burden on someone else. It is as much your responsibility to ask, as it is
for them to tell.
How long does it take before you know you have the disease?
Right after that test comes back Positive (the second time), you know.
There are no physical symptoms of the HIV virus. You can't tell that you have it until you
have had the test. You can suspect you have it, or fear you have it, or think
you have it - but you don't know you have it until you
have had the test.
Just as you can't tell someone else has it by looking at them - you can't tell you have it
by looking at yourself or judging by the way you feel.
Example - Some people will develop flu like symptoms as the virus initially
establishes itself in the body. Not all people do. How many times have you had the flu and
not been HIV Positive?
Semantics - No one has ever died or gotten sick from AIDS/HIV. They die or
get sick from the complications arising from the opportunistic infections taking advantage
of what HIV does to the immune system.
To answer the question directly - indefinitely. Without a test you could
live your whole life without knowing you have the virus. You just won't know why you
couldn't recover from the accident or disease.
What are the steps a person goes through in the process of getting AIDS?
You engage in a risk activity.
You acquire the virus.
Your immune system becomes weaker, until you fit some medical criteria for AIDS.
These are the only absolute givens. Everything else is a variable.
The HIV/AIDS virus effects persons in as individual a way as there are individuals. This
is one of the reasons HIV is a very personal thing. One persons experience with the virus
is not the same as the next persons. Infected in different ways, find out in different
ways, deal with it differently, different incubation periods, different medical regiments,
different opportunistic infections, different complications. It's all similar, but
different. As unique as you are.
Here is a HIV/AIDS time line that will show just how different the range of infection can
be.
Is it true that with the weakened immune system (AIDS) patients can't tolerate the meds and it won't do them any good?
No.
The question really boils down to a patient / Doctor decision on whether the risks (or
side effects) outweighs the benefits (of stopping or slowing the virus's progression).
This question is relevant in any stage of the disease. Many do not tolerate or react well
to the medications - others do. Some have severe side effects - others don't.
Patients and Doctors need to communicate their desires and tolerances in the debate of
Quality vs. Quantity of life. This is what will determine whether the medications are
doing them any good.
What are the side effects of the medications out there? Can they be helped with vitamins?
The side effects range from headaches to nerve damage, and it varies from person to
person. Different drugs react differently in different people. Some people have no side
effects - some have all the side effects - some only have one or two of them and in
different degrees of severity.
The most common are - (in no particular order)
headaches, nausea, diarrhea, upset stomachs, appetite loss, rashes, gas, rashes, fatigue,
insomnia, vomiting, dizziness, drowsiness, fevers.
Mental side effects - anxiety, confusion, depression, inability to concentrate,
nightmares, paranoia, more rarely: suicidal tendencies (most of these are only associated with the drug Sustiva, but others
have displayed them)
Some of the more rare and sever side effects can be - Kidney stones, elevated liver
enzymes, hair loss, peripheral neuropathy, anemia, muscle loss (or 'wasting syndrome'),
unexplained pains, pancreatitis, liver inflammation.
Long term side effects - Changes in blood sugar levels (development of Diabetes), changes
in fat levels and how the body stores it, bone marrow suppression, damage to mitochondria,
fluctuations in red and white blood cell counts, lactic acidosis (which can cause liver
and kidney failure), pancreatitis.
Can they be helped with vitamins?
Maybe - Once again - like these drugs, different things react differently in different
people.
The only symptom that I have tried to alter with vitamins and diet was diarrhea - I had no
luck. It didn't matter what I ate, drank, or how much anti-diarrheals I took, I had
diarrhea until I stopped taking the medication. In fact, it only took 24 hours for the
diarrhea to stop after the ceasing of the medication.
All of this information can be gotten from the drug manufactures, the pharmacist,
magazines, and on the web. Specific drugs have specific side effects - this is a run down
of the most common from them all.
Could you be more specific about which drugs cause which side effects?
Sure I can. With the help of a Chart Published in POZ magazine.
(PI's) Protease Inhibitors - This class of drug blocks the process in which HIV reassembles itself inside a cell. Specifically, they block Protease, and enzyme necessary for cutting viral peptides into smaller, functional units, in order to create new active viral particles.
| Agenerase (amprenavir) | Diarrhea, nausea, oral tingling and numbness, rash, vomiting. | Long term side effects : Changes in blood sugar levels (and potentially development of diabetes), elevations in blood fat levels, and changes in the way the body stores fat (including development of fat deposits in the abdomen and on the back of the shoulders, breasts and limbs, as well as loss of fat in the arms, buttocks, legs and face). |
| Crixivan (indinavir) | Anxiety, back pain, diarrhea, headache, insomnia, kidney stones, nausea, rash, stomach upset, vomiting. | |
| Fortovase (saquinavir) | Diarrhea, elevated liver enzymes, headache, insomnia, nausea, stomach upset. | |
| Norvir (ritonavir) | Appetite loss, diarrhea, elevated liver enzymes, nausea, oral tingling and numbness, stomach upset, vomiting. | |
| Viracept (nelfinavir) | Diarrhea, elevated liver enzymes, gas, nausea, rash, stomach upset. |
(NRTIS or 'Nukes') Nucleoside Reverse Transcriptase Inhibitors - This class of drug mimics one or more of the components of HIV DNA or RNA interrupting the viral replication process. Specifically, it blocks the reverse transcriptase enzyme, inserting a nucleoside analog into the new viral DNA strand which terminates the replication process before it is complete.
| Retrovir (AZT) | Appetite loss, fatigue, headache, nausea, stomach upset: more rarely: anemia, muscle loss, pain | Long term side effects : bone marrow suppression and damage to the mitochondria (the cell's energy source). These effects may cause low red and white blood cell counts, muscle pain and loss (particularly in the arms, buttocks and legs - often referred to as 'wasting'), fatigue and peripheral neuropathy. More rarely: lactic acidosis (which can cause liver and kidney failure and death) and pancreatitis. |
| Epivir (3TC) | Hair loss, nausea | |
| Combivir (AZT+3TC) | See Epivir (3TC) and Retrovir (AZT) |
|
| Hivid (ddC) | Mouth ulcers, nausea, peripheral neuropathy | |
| Videx (ddI) | Diarrhea, nausea, peripheral neuropathy; more rarely: pancreatitis | |
| Ziagen (abacavir) | Serious allergic reaction*, appetite loss, diarrhea,
insomnia, nausea, vomiting *Serious allergic reaction - resembles the flu - Call your Doctor immediately to determine if it is the allergic reaction - and follow Dr's instructions. Do not do this on your own! Do not stop taking the medication, if you do - do not start taking it again. This can cause a FATAL allergic reaction. To avoid this a Doctor's supervision is necessary. |
|
| Zerit (d4T) | Facial wasting, nausea, peripheral neuropathy: more rarely: pancreatitis |
(NNRTIs or 'Nerts') Non-Nucleoside Reverse Transcriptase Inhibitors - Like the nucleoside analogs, they interfere with the reverse transcriptase enzyme essential for viral replication. they have a different mechanism of action and a distinct side effects profile.
| Rescriptor (delavirdine) | Elevated liver enzymes, fatigue, headache, rash, stomach upset. | Resistance develops very easily in the NNRTI class - meaning that if you are taking one of these, adherence to medication is a must or it will become useless. |
| Sustiva (efavirenz) | Anxiety, confusion, depression, dizziness, drowsiness, elevated liver enzymes, fever, inability to concentrate, insomnia, nausea, nightmares, paranoia, rash, stomach upset, more rarely: suicidal tendencies. | |
| Viramune (nevirapine) | Elevated liver enzymes, headache, rash, stomach upset: more rarely: liver inflammation. |
Chart of T-Cells, Viral Load, Medications and notes.
| THESE | ARE | MY | BLOOD TESTS |
| Date | T-Cells | Viral Load | Notes: Medical changes |
| 6/29/93 | 549 | N/A | . |
| 9/16/93 | 404 | N/A | . |
| 10/21/93 | 464 | N/A | . |
| 3/1/94 | 365 | N/A | 3/14/94 Begin AZT and ddI |
| 5/11/94 | 585 | N/A | . |
| 8/9/94 | 607 | N/A | . |
| 10/31/94 | 448 | N/A | . |
| 1/31/95 | 532 | N/A | . |
| 5/2/95 | 441 | N/A | Begin d4T and ? stay on AZT |
| 8/17/95 | 570 | 2059 | . |
| 10/31/95 | 454 | 4005 | . |
| 2/6/96 | 342 | 22,845 | AZT, 3TC, Saquinavir |
| 3/8/96 | 570 | <100 | . |
| 8/5/96 | 578 | 2,522 | . |
| 10/24/96 | 440 | 9773 | . |
| 12/9/96 | none | <400 | . |
| 1/31/97 | 527 | 21,570 | . |
| 4/1/97 | 486 | 5,362 | Crixivan, ddC, d4T |
| 6/27/97 | none | <400 | . |
| 7/14/97 | 369 | none | . |
| 9/4/97 | 462 | 514 | . |
| 11/14/97 | 578 | 23,861 | Crixivan, Combivir |
| 12/31/97 | 760 | 100 | . |
| 4/2/98 | 555 | 18,000 | . |
| 4/20/98 | 18,438 | . | |
| 5/25/98 | 400 | 26,237 | Fortovase, Norvir |
| 8/8/98 | 416 | 131,766 | Start Sustiva, ddI, Hydroxyeura |
| 476 | <25 | Dec 1 Off medications - side effects to much to tolerate. | |
| 01/06/99 | 387 | >50,000 | Start Bactruim 1/15/99 - end because of allergic reactions 2/2/99 |
| 03/09/99 | 347 | Not done | Blood drawn for T-Cell 03/09/99 Genotype
drawn 03/29/99 04/28/99 Genotype says virus is sensitive to everything (no drug resistance's) Going to start Combivir and Ziagen as soon as a rash clears up (05/13/99) |
| 06/10/99 | 389 | 530 | Good results. Drew blood for VL on 07/07/99 for comparison. |
| 07/10/99 | N/A | 19,727 | Drew blood again today. Starting Leviquin and Tussionex Lq. for cough. Only ten days unless it continues. New Genotyping shows resistance to all NUKES and most NNRTI's. Seen again 1 month. |
| 08/23/99 | 428 | 28,653 | Drew blood again for Viral Load only. Things seem steady. |
| 09/20/99 | N/A | 27,000 | Seen again on 11/02/99 |
| 11/02/99 | 397 | 30,000 | We are hovering in a gray area. No changes yet. |
| 01/31/00 | 338 | 48,000 | Blood drawn for genotyping on 2/24. May change meds depending on results. Next appointment is March 29 |
| 03/29/00 | 29,279 | Blood drawn on 3/29 while I consider which treatment plan I wish to pursue. | |
| 5/10 Keep Combivir, add Viramune and
Agenerase. 5/18 pm Break out in a Rash. Dr. and I disagree on which med. is causing the rash. I follow Dr.s orders and stop taking Viramune for 24 hours - then go to half (5/19). (5/21) Rash persists. Stopped Viramune until further notice. |
|||
| 07/10/00 | 369 | 3,500 | Continue Amprenavir and Combivir. Not going to add Viramune back. Add Imodium to regiment to stop Diarrhea - Imodium not strong enough - change to prescribed Lonox (diarrhea continues, but is 'manageable') |
| 11/06/00 | On 11/03 I noticed abdominal pain that I
thought was a strained muscle. Pain continued to increase until I checked myself into the
ER on 11/05am and was released with pain killers. They didn't help - after vomiting I
asked to be taken to the ER 11/05pm. I was given more pain killers, told not to take my
medications, and referred to my Dr. 11/06 Dr. checked me into Hospital for Dehydration, low Platelet count, and hoped to run enough tests to find the cause of the abdominal pains. Discontinued all meds until further notice. Platelets at admission (11/06)- 10,000 Low enough to be a bleeding danger (140,000 is normal - last count of mine to compare - June 108,000). Platelets during stay (11/07)- 32,000 rise thought to be due to stopping the meds. Platelets at discharge (11/10)- 44,000 no longer a bleeding danger. Pain continues at 'strained muscle' level. No cause yet found. Thought to have been medication related. Scheduled for more blood tests on 11/13 |
||
| 11/20/00 | Lab Dr.'s called my home 9pm 20th following
blood drawn on the 20th. The blood results from 11/13 - platelets 49000 Had blood drawn again 11/20 : Lab called me at home to say my platelets had dropped to 39000. If I have any bleeding problems I should call the Dr. earlier then the scheduled appointment on the 4th. |
||
| 12/04/00 | 397 | 16,579 | 11/27 - platelets 22,000 11/29 Had another CT scan of the abdomen and Bone Marrow Aspiration. Conclusion of Bone Marrow Aspiration is that I have Immune Thrombocytopenic Purpura (ITP). We are determining which drugs I can take to lower the HIV and save the platelets. |
| 12/08/00 | Platelets at 9,000. ITP will be treated
with IGI (Immune Globulin Intravenous (Human)) - received first shot today. Scheduled for
Lab work weekly. Abdominal pain is basically gone. Just faded away. |
||
| Platelet Counts ^2000 v2001 |
12/11/00 12/18/00 12/27/00 01/02/01 01/08/01 |
28,000 35,000 37,000 28,000 17,000 |
IGI seems to only last about a month for
me. Receiving another treatment on 01/10/01 Once again they are talking about spleenectomy. |
| Platelet Counts |
01/15/01 01/22/01 01/29/01 02/05/01 |
35,000 26,000 25,000 22,000 |
Dr feels we aren't holding enough ground (numbers look better to me) Wants to up the dosage on 2/8 and is still pressing for the spleenectomy. My Dr having talked to me - seems to support my decision to wait until we have tried new meds - he's still trying to find some (VL&T-cell blood work drawn 2/8). |
| 02/08/01
Platelet |
408
02/12/01 |
76556
82,000 |
T-cells are up - but so is the viral load.
Platelets got a very good response to the medication this time and actually went up on there own. Put off the medication treatment. Continue weekly blood work, hold off on treatment until they drop below 10,000. |
| Platelet Counts |
03/13/01 03/19/01 03/26/01 04/02/01 04/09/01 04/16/01 |
17000 12000 13000 27000 14000 13000 |
Called in for treatment on the 26th, Then again on the 16th. May 5th the Doctor will hear from the drug company about whether or not I will qualify for another drug. 5/23 No word yet from Trovirdine for advance release. |
| Platelet Counts |
04/23/01 04/30/01 05/08/01 05/14/01 05/22/01 05/29/01 |
24000 16000 14000 13000 22000 36000 |
Not getting the results from the IGI that
we would like. The spikes are getting lower and shorter. * Went in on the 22nd for an IGI treatment. We did the lab work first. Since it had gone up to 22 on it's own - we skipped the treatment. I need to mention to the Dr. that bloody noses became more common in this period of time. |
| Platelet Counts |
06/05/01 06/12/01 06/19/01 06/26/01 |
26000 15000 16000 12000 |
Down, but not enough for
treatment. Down again, close for a treatment. Up just a hair - still no call for treatment. Down, low - should get a call soon. I called them - they want to see if it comes up on its own next week. If not, then we treat it. |
| Platelet Counts |
07/02/01 07/10/01 07/16/01 07/23/01 07/30/01 |
19000 None 10000 21000 19000 |
Up all on it's own again.
Wonder how high it will go? No test - on vacation in Denver. Going in for treatment on 7/19 Treatment has made an improvement. Fell just a little - not big. |
| 07/18/01 | 230 | 75000 | I have signed up for tinofovier |
| Platelet Counts |
08/06/01 08/13/01 08/20/01 08/28/01 |
10000 11000 18000 8000 |
Big drops every where - still feel
great Received IGI treatment directly after the test. Got copies of counts for Drug trial exceptions. IGI treatment tomorrow. |
| 08/26/01 | Starting new medication regiment. Kaletra (Lopinavir 133mg / Ritonavir 33mg - 3 gel tablets - twice a day) With Food Videx (400mg - 4 tablets (chewed) - once a day) Empty stomach Ténofovir (300mg -1 tablet- once a day) Zerit (400mg - 1 capsule - twice a day) |
||
| Platelet Counts |
09/04/01 09/10/01 09/17/01 09/24/01 |
21000 27000 24000 20000 |
Good Jump after treatment Second climb. Maybe the HIV drugs are helping. Small fall - but feeling under the weather. Nice and slow steady decline - I can live with that. |
| 09/24/01 | 182 | >600 | Basically an undetectable Viral load, but a big drop in T-Cells that should come back. We will be watching everything. |
| Platelet Counts |
10/01/01 10/08/01 |
13000 24000 |
I guess I didn't rest enough on my
vacation Nearly doubled on their own. Only going for this lab once a month now. |
| 10/22/01 Platelets |
182 11/05/01 |
457 54000 |
Lab Drawn and flu shot given. Same
T-Cell and lower VL. I must be doing better |
| 12/01/03 Platelets |
136 12/01/03 |
623 49000 |
I think I messed up some
dates here - I can't be missing an entire year of labs. Cloresterol: 145 - Triglycerids: 182 - HDL: 22 (low) - LDL: 26 |
| Platelets 08/23/04 |
10/12/04 301 |
33000 <400 |
Considering that I enter this as I recieve news of my latest test results - I should mention these counts Glucose Serum is 104 (high, but not really high) Bilirubin 9.2 AST 34 (normal) ALT 58 (high 40 is top range) |
| 11/16/04 Platelets A1c |
220 11/17/05 8.9 |
<400 20,000 |
Glucose Serum is 625 (Very High) I am to check into a Hospital ASAP (Friday 11/19/04) to get this under control and learn if I need insuline or other medications regularly to control this. Others: Sodium 128 (low), Chloride 90 (low), Bilirubin 5.7 (high), AST 14, ALT 15 White Blood Cell - 2.8 (low), Red Blood Cell - 3.2 (low), Lymphs 0.5 (low) |
| From the | Hospital | 11/19/04 | Hematology : WBC 3.6 (L), RBC 3.14 (L), HGB 12.0 (L), HCT 35.0 (L), MCV 111.5 (H), MCH 38.4 (L),SEGS 75 (H), LYMPHOCYTE 16 (L) Automated Chemistry : Glucose 529, Bilirubin 4.3 (H), Chloride 95 (L) AST 14, ALT 34, Sodium 135 Special Chemistry was NEG for Acetone Serum (Keytones) Urinalysis showed that Glucose was HIGH (duh) |
| NEW | SET-UP | ||
| TEST | DATE | RESULT | NOTES |
| T-Cell V-L |
02/09/05 02/09/05 |
172 <400 |
Down from last reading of 274 Still "Undetectable" |
| A1c Liver Thyroid Cholest Triglyc |
05/09/05 | 4.2% Normal 268 410 |
Exellent! down from the 8.9% at diagnosis |
| T-Cell V-L Platelets |
06/01/05 06/01/05 06/01/05 |
246 |
T-Cells are up But so is the Viral Load. Not much, 'just a blip' it all hinges on the new tests. Everything else that was flagged in the Blood panel MCV 116 H (80-98) - MCH 40.2 H (27- 34) - White Blood Cell count 2.6 L (4-10.5) - Red Blood Cell count 3.28 L (4.1 - 5.6) - Neutrophils (absolute) 1.6 L (1.8 - 7.8) - Lymphs (absolute) .6 L (.7 - 4.5) |
| New Tests Drawn 09/09/05 | |||
| A1c | 9/26/05 | <4.3% | From a letter dated 9/26/05 Cholesterol 276 - Triglycerides 401 I have opened the letter on 12/07/05 while sorting bills - There is a script for Tricor which I have not started. Will bring up at next appointment. |
| T-Cell V-L Platelets |
11/30/05 11/30/05 11/30/05 |
490 Undectable 14,000 |
Drastic increase in T-Cells. Billiruben is chronically high, 4.7 (norm is 0.5 to 1.2) because of the medication I am on; Retonivir. |
|
A1c |
02/14/06 02/14/06 02/14/06 02/14/06 02/14/06 02/14/06 02/14/06 |
6.3 473 18 303 6.1 39 56 |
A1c should be between 4.0-6.0. This is now high, from my previous 4.2 Should be <149 - this is up slightly from before. Should be between 40-90 Should be <200 I must be missing a test. The last reading I remember was 463 so this is down - No vitamin E, Fish Oil or Prescription. 0.3-1.2 Chronically high due to medication 16-37 Just a little high 10-46 Kind of high |
| Tests drawn T-Cell V-L Platelets White cells Red cells MCV MCH |
03/06/06 03/06/06 03/06/06 03/06/06 03/06/06 03/06/06 03/06/06 03/06/06 |
345 <400 10,000 3.4 3.61 109 38.3 |
B/P 138/70 pulse 78 weight 181.2lbs A more normal count for me "Undetectable" Still dropping, I should call my Blood Doctor - Other flagged results follow Low - range 4.0 - 10.5 Low - range 4.1 - 5.6 High - range 80 - 98 High - range 27.0 - 34.0 |
| T-Cell V-L Platelets Injection |
05/24/06 05/24/06 05/24/06 06/09/06 |
299 153 9,000 WinRho 4000 mcg |
B/P 126/74 Pulse 76 Temp 98.2 wieght 176 lbs. Ultra sensitive test, this is 'undetectable' or <400 "To low to ignore any more." - "Amazingly healthy despite these counts." Here is the plan; Stop Danazol - start WinRho (again) and do a bone marrow test to determine if I am making platelets. If I am, then we need to reconsider the spleenectomy. |
Results: A1c Cholesterol HDL LDL triglyceride |
06/12/06 06/16/06 06/16/06 06/16/06 06/16/06 06/16/06 06/16/06 |
LFT 5.1 232 23 172 187 |
B/P 128/72 Pulse 80 wieght 174 lbs. Plan to fast for Blood Tests on 6/16/06 Liver Function Tests - abnormal Liver functions (chronic) (received on 7/15) 4.0 to 6.0 is normal - this is down from the previous 6.3 target is below 200 goal > 45 - was 18 (improving) goal < 100 - was ? goal < 150 - was 473 (improving) |
| Platelets Marrow Injection Platelets Injection Platelets |
06/14/06 06/14/06 06/16/06 06/21/06 06/21/06 06/29/06 |
10,000 drawn WinRho 26,000 WinRho 34,000 |
B/P 128/80 Results: I am making platelets - thus the spleenectomy is the only option. 4000 mcg - Because this is only an expensive short term solution. <- It takes about 2 weeks for the shot to take effect. 4000 mcg - called therapist for appointment in first week of July (6th). Skip injection and see how long it stays higher. |
| Platelets Platelets Platelets Platelets Platelets BP 118/82 Platelets |
07/06/06 07/12/06 07/19/06 07/26/06 08/03/06 Pulse 80 08/10/06 |
55,000 |
Skip injection and see if it continues to go higher. 4000 mcg WinRho Friday 07/14/06 and refer to surgeon (apt on 7/20). 4000 mcg WinRho Friday 07/21/06 Asked to skip this Friday until he knows more about what the surgeon will do. Told to skip the shot because "I'm good to go for the surgery." Sugery Consult on 08/10/06 Surgeon asked me to continue WinRho - Oncologist said NO - asked why the surgery was scheduled so late (9/5/06) ... I am getting the attitude from the Oncology office that I am the surgeons responsiblity until after the surgery. |
| Platelets | 08/17/06 | 12,000 | Oncology
office finally answered my calls (took a week) and said that he would
give a WinRho shot the week before the surgery or if I go below 10 -
only. My objections, and concerns were ignored. Note: I was called on the 18th by Oncology. They want me to come in for a shot (today - can't) I was 'yelled' at for not making the appointment with a count of 12. The next time I could even begin to make it in for them is the 23 - next lab. They already have me scheduled for a shot on the 29th regardless for the surgery. I'm pretty sure I just fired an Oncologist. |
| Vaccine Vaccine Vaccine Platelets Injection Labs drawn |
08/22/06 08/22/06 08/22/06 08/22/06 08/22/06 08/23/06 |
Left arm Right arm Right leg 13,000 WinRho |
MPSV4 (Miningococcal polysaccharide vacccine) for Meningitis Bacterias 1pm Hib (Haemophilus Influenzae Type b vaccine) for Influenzae Bacterias 1pm PPV (Pneumococcal Polysaccharide Vaccine) for Pneeumococcal Bacterias 1pm It went up even without a shot 3pm 4000 mcg 3:45pm ... Appointment for 29th still stands - surgery now on 12th. See 0608.22 for more details |
| Platelets Injection Platelets Injection |
08/29/06 08/29/06 09/05/06 09/05/06 |
21,000 WinRho 17,000 WinRho |
Some reaction to shot on 8/22 4000 mcg 2:45pm ... Have appointment for lab and shot on 5th. Kind of surprised me. I was hoping it would be higher, not lower. I don't think this drug is working now either. Surgery is on the 12th. |
| Platelets | 363,000 | This was the count after leaving the hospital | |
| A1c Cholesterol HDL Choles Triglyceride Bilirubin AST ALT White BC Red BC Platelets |
10/25/06 10/25/06 10/25/06 10/25/06 10/25/06 10/25/06 10/25/06 10/25/06 10/25/06 10/25/06 |
5.4 182 36 387 2.2 29 40 3.6 3.46 360 |
Range - 4.0-6.0 This is good control of my diabetes Range - 0-200 This is good and down from before Range - 40-90 Range - 0-149 This is High ... don't know what I can do for it. Range - 0.3- 1.2 This a Chronic condition Range - 16-37 Range - 10-46 Range - 4.8-10.8 This is low and a side effect of my HIV Meds. Range - 4.5-5.9 This is low and a side effect of my HIV Meds. Range - 147-412 Holding steady after the surgery |
| Viral Load Platelets WBC RBC Bilirubin AST ALT |
11/20/06 11/20/06 11/20/06 11/20/06 11/20/06 11/20/06 11/20/06 |
524 242 4.7 3.61 4.1 36 49 |
<400 is "undetectable", this rise is not enough to be concerned with. Platelets dropped,
but still within a "normal" Range (147-412). The rest are chronic
disorders from Long term medications and just need to be watched. |
| Viral Load CD4 Platelets WBC RBC Bilirubin AST ALT |
03/12/07 03/12/07 03/12/07 03/12/07 03/12/07 03/12/07 03/12/07 03/12/07 |
<50 524 258 5.9 3.67 5.1 34 43 |
"Undetectable" with the most sensitive test available. This is the highest I have been in several years. Lower, but still 'normal'. Normal is 4.0 - 10.5 This is Low (normal is 4.1 - 5.6) This is High (Chronic) Normal Normal |
Don't be afraid to ask me anything. The only stupid questions are the ones you don't
ask.
Please address questions as "Questions" or "?" so I can find them
easier. Thank you.