The Cure?????

[Moffie65]

The Cure?

I see posts from new members of the Living With HIV Forum, and this question is discussed often. 

I think it is very important here, to bring up a critical point about “curing” HIV.  It is crucial to remember that this virus becomes a custom virus very soon after infection; taking on RNA and DNA of yours, which means only one thing.  If the virus is blasted with some newly discovered chemicals, there is a probability that it will also blast your immune system, therefore killing you.  Consequently, there is no way to cure HIV as of yet, without killing the host at the same time.

What are we supposed to do with this news?  Well, I am sure you understand by now, that I am about to tell you. 

Achieve a level of comfort:  The first and most important thing for someone new to come to grips with, is that this is a DEADLY disease.  It will kill your immune system and in the end, it’s presence in your body will set you up for a long and protracted death; unless of course, you are one of those lucky ones that check out with a heart attack, or some other quick solution.  It takes a huge amount of human spirit to learn to cope with disease, let alone one that will take you out.  This is what you must do to survive this insidious bug.

Believe:  Acceptance is the first step. The second is of course, believing that what you know is real, and is not going to change for the rest of your life.  Some of you here have other demons that you must deal with, and I don’t have to list the many things which can cause us to become dependent, or hooked on things that will keep us from thinking straight or making good decisions.  None of this makes any difference to the virus.  It will do what it has to do, and keep on replicating, and destroying your immune system. That is one irrefutable fact, regardless of who you are, how you live, or how much money you have; or don’t?  If you have other issues like drug use, or alcohol use, or any number of things which make your body physically weaker; then you have to deal with these things also, as they will stand in the way of clear thinking, which is mandatory for keeping on top of the viruses’ damage to your body.

Create a Strategy:  There are many things one can do to keep the bug at a disadvantage, and most of them are very easy to do, but must be done for the rest of your life.  You have to make a commitment not to let anything in your body, (that is any of your orifices) that isn’t completely clean.  When you eat a banana to boost the level of Potassium in your body, it would be a good idea to wash that banana with antibacterial soap, BEFORE you peel it.  Why, you say?  Well because bananas are grown in fields which are fertilized with human waste, and it washes throughout the fields as the workers are picking and packing your food.  Yes they are washed, but I think with all the fecal bacteria involved here, I would just as soon do it myself, Thank You.  Also, there is almost no way that you can then peel the fruit, and not get any contamination on the fruit you are going to put into your mouth. 

It was stated as early as 1994 that there were NO completely clean water supplies in the United States.  The biggie is Cryptosporidium.  Crypto is a bug that will make a person without HIV sick enough to be hospitalized, and for someone with HIV, it will kill you.  This is not particularly good news, as Crypto can only be killed with ammonia, which for obvious reasons cannot be placed in the public water supply.  Chlorine is the obvious next solution, but Crypto loves chlorine, and thrives in its presence.  Therefore, ALL the water you consume for the rest of your life should be filtered.  The government knows this, and has approved the purchase of tap mounted water filters for you to use free of charge and this will be done through the Ryan White funding which is what is paying for your medications.  I know some of you are privately insured, but in the end, there is little hope that this government will be there with your expensive medications bill, 10 to 15 years from now.  The financial burden on the economy will more than likely, prevent any further funding of HIV medications.  At least this is my observation, based on current trends.  Of course we can change that, but I also don’t see the human spirit of unity among newly infected that would make this possible.  In creating your strategy for survival; sleep, diet, cleanliness in your home, and many other things must be considered, because whether or not you like it, your life has just made a dramatic change, and you can make a difference in your health by changing things in your life that might help keep HIV under control.

Think about your choice of secrecy:  Most of you are aware that because of the way the virus started to spread in this country; there are loads of Gay people on this site.  Being Gay, is not something that most people can identify in a person, because there is no physical outwardly obvious sign.  We deal with secrecy as a tool for survival in a “Christian” (?) nation that would just as soon shoot us as look at us.  At least that is the attitude in many rural parts of this land.  Many of us come out with who we are early in life, and then we don’t have to continue to hide or live in secrecy, leaving us without all the STRESS of living with a secret for the rest of your life.  I am not suggesting that everyone reading this come out about your HIV status; that would not be prudent.  What I am saying is that like being Gay, you will be living with HIV in your body until you die.  Are you ready for the secretive and stressful existence that this will make your life?  Not very bright is it?  I strongly suggest that you at least think about claiming your HIV, and making it a part of your thought and living processes early in your infection.  This will make your immune system work more efficiently, giving you a greater chance of a long life.  Coming out publicly about it is a choice which some of us have made, and that stress of carrying a secret that nobody dare find out, is now gone and leaves all our energies to deal with our lives, the disease, and our families.

HAART:  If you are fortunate enough to live in a country where medications are readily available, it is very important to remember that this is a mutant virus, and with that knowledge comes responsibility.  We have to be responsible for creating personal habits that will ensure that the medicines we are prescribed are taken with a regularity that will sustain our immune systems, and keep the virus under control.  However this is done is of an individual nature, and we must take that on with a seriousness that will keep us healthy.  It is also important to remember that one or two missed doses a month are not going to kill us, but if you have other issues like alcohol or drugs, then you must be very careful to be honest with yourself and keep track of you medications schedules very well.  Most of us will live full lives, in spite of the science of this bug, but we must also remember that in terms of medical science, we are all still guinea pigs and there is no real confirmation that in fact we will live a full life.  Many of the drugs we take daily, are working on our organs and might do us long term damage that is still not known.  With that in mind, we still must be vigilant and keep ourselves healthy and happy, however we achieve that goal.

Living with HIV is not easy, and will challenge you daily, and the sooner you come to an understanding of the real impact that it will make, the sooner you will be able to keep your body in balance and live a long and healthy life.

Love,

(edited to "cure" a typo)

[ChaplinGuy]

Moffie, you're a good guy and I've always enjoyed your posts. But this is somewhat random and incoherent in my opinion. Besides setting up the context of your statement with a bleak message regarding any hope for improved science for treating and preventing HIV/AIDS, you go on to equate being gay into having HIV.

My apologies to my fellow poz member, but I don't quite understand why you're making the connections you are here.

(And about gay people exhibiting no outward signs of their sexuality? Come on...)

[Moffie65]

Above all else, I am sometimes random, and incoherent.  My apologies if it disturbs some readers.

The message is pretty clear to me, but that is because I live inside my own brain, so randomness and incoherence is sometimes the result.

Love,

[leatherman]

I'll back you up Moffie.  I think you summed things up nicely for a "realistic" viewpoint of what having HIV is all about. I have a similar debate with my partner occassionally. It's all fine and dandy to say that people die all the time ("you could get hit by a bus"); but the reality is that I have an illness that's going to do me in sooner than I would like. It's sad and depressing but you have to come to grips with it if you plan on doing anything to hold out as long as possible then.

Because life goes on until then, and I thought you outlined several positive steps to take to in real life - develop a strategy to enjoy life, take steps to improve your current health status, and get on the meds.

In realistic terms too, I do think that (at least in America) being HIV+, or being Gay, or being Afro-American, or even being fat can be linked together as each of these groups is a group that the majority can, and often does, discriminate against. The main similiarity for HIV+ and Gay being linked together, unlike the other groups I mentioned, is that from outward appearances, most people can't be immediatley stereotyped into those groups. For me, the fear of coming out to my parents was equal to the fear of telling my employer about my HIV status.

But I will say that your post did stir up my germ-ophobia a bit. Knowing that all those germs are out there is what makes me keep to my house quite a bit. Now I see that I'm still in danger here! Ack! LOL

[Iggy]

The issues that you discuss and that I struggle with most are the secrecy and taking care of myself.

The secrecy choice was by and far taking from me by the cruelty of others and that is something that is bittersweet.  I am angered over it because the revelations to m family should have been for me to do on my time and choice, however I do admit (and I know this is what you mean about this area) that the loss of the secret of my HIV status to my family has in fact made me closer to them and to myself.  There are conversations had that would not have existed before, and more importantly, there is a sense of understanding about me in things that need not be talked about - what was once awkward silence is now a comfortable knowing...or at the very least a mutual confidence in each other.

The process has led me to tell friends and helped me select who is in my life now vs. the fear of who will have me in theirs.  That is empowering.  My work doesn't know but I admit having no inordinate fear as the org is quite knowledgeable in the matter.  Frankly I don't expect it to come up but I also don't fear it.

As for the issue of taking care of myself I am my own worst enemy.  I go to the gym 5x a week and eat the good foods and then I'll go out with friends and have 5-6 macallan neats.  I also suffer from the feelings of being invulnerable that comes with my age - still not on meds and feeling pretty good physically - so I take the risks that are unwise when I face the reality that just because I look outwardly untouched by this deadly virus doesn't mean that my insides do.

The truth of the matter on that one is that I do know better - but I think I'm still too stubborn to get it until my body forces me too.

Thanks for this post Tim - it was a necessary reminder.

[Moffie65]

Leatherman, and Iggy,

It is important to remember that in fact stigma and prejudice is always perpetuated by silence.  Can you guys remember the early campaign saying that "Silence = Death"?  I can remember when I first saw those signs that I was a bit confused and really didn't know the true meaning of the saying because of my totally being out of the gay closet, so it didn't really sink in.  Now though, I am constantly reminded of this because of the current state of silence that shrouds this disease, and the only answer is for everyone to be open, even though it might be difficult, it still is the only path to killing stigma and hate around this disease.

Thank you for your thoughtful comments.

Love,

[racingmind]

I understand what you are saying Moffie and to some extent I agree with most of it....

The disclosure thing is my current problem.  I feel like keeping it secret offers a veil of protection.  I feel like if I tell one person that is not HIV+ themselves or that I do not trust implicitly, the information will spread like wildfire and I will lose control of that aspect of my life with this disease.  HIV (in its early stages at least) is a lot like being gay in that you can hide it if it suits your needs (this has been the number one topic with my therapist for a while now...).

Shouting it from the rooftops is not the best solution for EVERYONE....like the virus itself, HIV and living with it is different for everyone.

We must all do what it is right for all of us....and shame on you for dashing hopes of a cure.  NOBODY knows how this is going to play out in the long run.  Sometimes the thought that I might be able to rid myself of HIV sometime in the near or distant future puts a smile on my face and gets me through the day.

My two cents.

[Miss Philicia]

]Being Gay, is not something that most people can identify in a person, because there is no physical outwardly obvious sign.

I can always tell... TRUST

However, I do agree with that passage you wrote about secrecy.  It's very important to negotiate a proper zone in one's head about their infection, and of course it varies from situation to situation.  The more "out" one is the better IMO, but it is certainly not easy.  The less "out" you are the more it can fester mentally... though in my experience I was in denial about this fact for a good 10 years of my infection and then it all burst out at once in my head, I had a melt down, and then obtained a nasty anxiety disorder and it was JUST SO NOT PRETTY.

[Moffie65]

....and shame on you for dashing hopes of a cure.  NOBODY knows how this is going to play out in the long run.......................

Yes, Racing, I agree that Nobody knows for sure about a cure, but with the science we have available to us today, and knowing that we are sure that each HIV is dna specific to the immune cells of the host; one doesn't have to have a Doctorate to figure out that if you kill the virus, you in turn kill the host and the host's immune system.  So, with that knowledge, dreams should consist of making our lives Whole, Complete and Happy right now, even as we carry the virus forever.  That is the true meaning of this thread and also the truth about the science of this bug.  All of us can shit in one hand, wish in the other, and we all know which one will fill up first.  I happen to be a bit more of a pragmatist and don't deal well with fantasy.  All that being said, you should continue to dream of a cure if it serves you well, but for me, I just don't have the time, or the inclination.

Philly, yes, the public personna we all have and give out to our families and neighbors is ours to control, and while I do advocate for being out and open about our status, I also live in a very very conservative part of the country where people carry loaded guns to the market.  Even still, they stop me and inquire about how things are going and if the work is progressing well.  People are not nearly as much assholes when we claim our own power, and those that are, tend to shy away from someone who claims this shit and empowers themselves in their home community.  Funny thing is, I am constantly surprised when I tell yet one more person aobut the disease and how it will screw up their kids lives and theirs also, because most parents are not inclined to ignore something that they know is possibly going to kill their kids, and totally screw up their lives forever.  Only thing is, it takes us to make it an issue, because they are always busy with all the regular stuff with raising a family.

Thanks you guys,

Love,

[Miss Philicia]

Yes, it's all about visibility.  To fight the stigma you have to be willing to familiarize the masses by example, and that is no easy task because so many recently infected are dealing with other things rather than that.  All I can say is everything became SO much better for me once I swept all of that away.  Hell, my mother even felt the need to tell even more people than I'd chosen to (of course she asked me first) but she needed support from HER friends and close family.  It's even better for me that she's willing to make converts.  Go Mom!   She had breast cancer and survived 15 years ago and is still an activist with those groups, so my hat's really off to her on it all.

[Jody]

Thanks Tim for a very thoughtful post about surviving in this world with HIV...I found it quite enlightening indeed and containing, as usual in your posts, much beneficial information, especially since I drink bottled water and now am reading that tap water is safer - OY !!!

I guess it's like Roseanna Roseannadanna used to say on SNL- "It's alllllllllllways something"

Jody 

[Miss Philicia]

I've bought Brita filters since I was diagnosed moons ago.  They filter out cryptosporidium but Pur brand does not, or at least that was the way it was back then.  I did not know I could get freebies via Ryan White.  Interesting... I'm sure there's all sorts of crap like this they don't want anyone knowing about.

[northernguy]

I wish I was secure enough to disclose at work and to family, but I'm not. In my mind I am still viewing it as an admission that I was weak and failed.  I know that's irrational and unhealthy, but there it is.

As to a cure, I can't let myself hope for that.  However, I am encouraged by the therapeutic vaccine research that may allow HIV to be controlled without all the toxicities of current meds.

[Miss Philicia]

You may get more comfortable as time goes along.  It took me a decade.  First my mother was diagnosed with breast cancer pretty much at the same time I got my HIV diagnosis, and not only that but somehow I was the one who drove down to relay the news to my grandmother, which was not a fun trip.  By the time she'd gotten a somewhat clear result from treatment I'd settled into my HIV routine and rationalized all sorts of reasons that I didn't need to tell them.  Anyway, I'd always figure I'd put it off until it was necessary.  Then years later my parents were saddled with dealing with my grandmother who was in her 90's.  She had a big fall, had to go to the hospital and once that happened it was like God switched on the dementia switch and we had to put in a rest home.  Anyway, that went on for years.  I kept saying when my grandmother died I'd tell my parents and well, Gran Gran just kept on ticking.  I finally gave up waiting for her to croak and spilt the beans... it was eating my insides too much not telling them, plus after two severe weight losses I knew they were looking at me like "wft is wrong with you?"  At the very least I should have told them before it became outwardly apparent.  I'm a loser... but I don't beat myself up about it now.  It is what it is... or was.

[fondeveau]

This is one of those posts which I've read and having done so, can't unread it.  But, I wish I could. 

To me, it paints an extraordinarily bleak outlook, one which is totally at odds with my prognosis, at least according to my ID specialist.

He's confident I will outlive him by far and says I will probably die of plain old age.  He's also quite optimistic about advances on the scientific front.  I don't plan on simply surviving, I'm gonna live and love it.

I'm not quite sure that the life cycle of the virus supports the premise that killing the virus means killing the host and therefore, makes it unlikely that a cure will be found. 

Perhaps, I'm just too naive and too boring a patient as I haven't had any OIs, no side affects,, etc, etc. etc. and it hasn't been that hard.  Other than taking a pill once a day and seeing the doctor every 3 months, I wouldn't know I was positive.

[lostboy]

This is one of those posts which I've read and having done so, can't unread it.  But, I wish I could. 

To me, it paints an extraordinarily bleak outlook, one which is totally at odds with my prognosis, at least according to my ID specialist.

I disagree. I quite often find Moffie's posts to be negative (sorry). However, this one is about being proactive and taking responsibility for your life with the disease.  It is saying that your decisions can have a big influence on the disease's progression. You should focus on making the most out of your life.

Moffie, thanks for sharing.

Lost

[JPinLA]

Hi Moffie -

I am fairly newly diagnosed (about 6 mos. now) and am absolutely still at odds with coming to terms with being HIV+; I suppose I am still developing my strategy.

I was struck by your post for its frankness describing the reality of dealing with HIV as well as the way HIV is viewed by those who have recently been infectedi (that is to say those in the last few years).  I see, what I thought you touched on a little, complacency among us.  Indeed, complacency and ambivalence  got me where I am right now.  How did this "it's not such a big deal" attitude come about?  In my opinion, the advent of effective drugs and research have fueled this a bit perhaps. Less people are dying so quickly from AIDS these day but they are indeed still dying from AIDS. Funding for social programs and research are being cut left and right in this country and yes we do need to do something about it.

I'm 35 now and I remember being in my early 20's working with ACTUP, Project AIDS, lobbying for research funding...  Then it kind of petered out and boom here I am.  I am concerned with the future of healthcare funding and all the social programs going to hell because of this complacency.  The voices that were once so many and so strong have diminished somewhat.  On this I agree with you absolutely.

I am a scientist and I do have hope for better and more effective therapies to keep this disease at a stand still at least..with better quality of life.  I also do have hope that a cure may someday happen.  It is a difficult thing to completely eradicate a virus like this as you point out but research with stem cell therapies and gene therapies could show a plausible chance that this could happen.  Most likely not in my lifetime but perhaps someday. 

As for disclosure, I take that one instance at a time.  At my place of employment, no way, not yet.  Family and firends well, that's a work in progress.  I also work (and have for many years) with my local ASO as a volunteer in many capacities and will continue to do so.  I think now, of course, my perspective has changed as well as  my message.

Finally, I am everyday thankful for my life.  I cannot regret the choices I have made and I accept my lot and am moving forward to keep me as healthy as possible.

Hopefully I haven't rambled too much and have made some sense. 

JP

[ChaplinGuy]

I think that the most important thing to keep at the front of our minds is that every day is a step forward in fighting, living with, treating, curing or eradicating HIV. It is so extremely important that we learn from the lessons of the past and from long-term survivors of this illness, but it is not beneficial to dwell on or get stuck in those lessons as persistent truths. Like the virus we all live with, the things we know about HIV are changing constantly - indeed progressing each year.

With all due respect to Moffie and his valuable life lessons, I guess this is to say that I simply choose to look forward, with blinding hope, happiness and appreciation.

[Moffie65]

............................To me, it paints an extraordinarily bleak outlook, one which is totally at odds with my prognosis, at least according to my ID specialist............

He's confident I will outlive him by far and says I will probably die of plain old age. 

I don't want to argue with Fondeveau, and I will not.  

However, for those of you who have not questioned your ID "Specialist", I would suggest you study this disease and question everyone and everything.

Do you know that the medications do not go through the blood brain barrier, and that HIV loves liviing in the fluid that bathes the spinal cord and brain?  Are you aware that the virus, even with a low viral load, can hide in the intestines where our immune cells are born and thrive under normal circumstances?  Are you aware that the virus kills the cells that buttress the intestines and keep them from leaking into the rest of our bodies?  Are you all aware that the HAART that we all know and love and have been told makes a "Fatal" disease "manageable" are in fact only 12 years old and none of us know the outcome of living with these medications in our livers, kidneys, and other organs for an protracted length of time?  

No, as I said above, I am not an illusionist, and I don't accept drug propaganda and I do not accept long term prognosis from someone who is paid by said drug companies to tell me unknown facts.  Like Lost and others have commented here, my point in this thread is to accentuate the necessity of establishing a life of reality, and a life that respects this bug and what it is continuing to do to our bodies, in spite of the magical medications.  None of us really know the impact to our bodies and organs over a 20 or 30 year period of taking them, and nor do the drug companies.  Nobody does at this point.  So, when your "Specialist" says that you will outlive them, tell them to level the playing field and start taking HAART themselves, and then wait a few years for them to come around to reality.  

To JP,

I appreciate your post and your admission that many of us have become slightly lax in realzing that this bug is not going away, but in fact intensifying.  As a scientist, I would challenge you to look at this thing with an open mind, and try to figure out why it is so very incessant and so very adaptive.  Why don't the medications reach the brain, and why is it so virulent from the day of infection in the intestines.  These questions really piss me off, mainly because nobody is seemingly even the slightest bit curious about them.  I see the drug compaines donating billions of dollars to buttress their power bases in Washington and even on CNN this very morning, Dr. Sanjay Gupta, reenforced the mantra that HIV has now become a one a day pill to keep under control, even though we all know that the bug can and does still mutate, even under the most adherant of patients.  So many Questions, so little time.

Chaplin,

Please re-read the first post and if you do so with attention, you will see that with 24 years of living with this shit, I have simply told people here to accept this fact, and move on to develop habits that will keep the bug a bit more controlled and allow us all to live our dreams and live full lives.  You obviously missed that point, so I don't know what I can say to you to impress the fact that living with hope is one thing, but personally I would rather live with action, as hope tends to be inactive.

Love,

[SASA39]

Huh , for the first time someone is telling the truth..........and because he is an oldbee noone could tell him " Don`t rock the boat ".........yes it is indeed hard as that..........but I`m hoping for a cure one day..........just for one reason .This bug is out of control and seems to evade just "targeting " population , and threath to spread among whole population............and "they " are afraid of that kind of outcome..........and for me the worst thing is to fight my emotional pain...........just simple questions : who am I now , am I worth( full ) human on this earth , what to do to decrease ( possible) future shame............and think that I`m maybe loosing this battle..................but anyway  thanks for realistic wiew conceirning this theme .............Al

[Miss Philicia]

I don't think we should speak ill of Dr. Sanjay Gupta!

[Moffie65]

Generally Philly, I like him, but when watching his "Summit on HIV/AIDS", titled "RU+?", I was shocked that all his expert witnesses for "HIV Manageability" came from Roche, Glaxo and others; yet he had NOBODY speak of the disease who was actually "LIVING WITH HIV/AIDS".  What a sham!!!!

Love,

[Miss Philicia]

But his hair is perfect!  You must trust him!   ha ha

I'm glad I did not witness that on TV.  Sounds comically WRONG.  Sanjay should have asked some of us Depends wearing Infectiosos onto the set... at least we could have hobnobbed with Anderson Cooper and gotten Christiane Amanpour's autograph (love her!)

[ChaplinGuy]

Moffie, what a horrible way to approach life. I just disagree with your approach, that is all. It's not that what you are saying does not have value to these forums, it's just that its value places emphasis on the wrong kinds of things (in my opinion).

It is the equivalent of a perfectly healthy person blogging about all the things that could happen to him and his friends based on things he's seen in the past. To me, that person is just stewing about what's going to kill him.

Moffie, we all die. Why beat that point to death (pun intended).

[englishgirl]

thought i would add my twopenneth to the discussion... i dont find moffie's post negative or depressing, on the contrary i find it quite positive and offering suggestions on how to know and understand your situation, not dwell on it, but take reasonable precautions. moffie i enjoy reading your views, please keep on offering your opinions and reflections xxx

[milker]

I think that Moffie's post may not resonate well to someone with good numbers and not on meds, having no particular symptoms, feeling good, and looking forward for a happy life, with its burdens, yes, HIV being one of them.

When I initially read Moffie's post it seemed too dark for me,  but I wanted to ingest it and re-read it before replying. I think Moffie is saying good stuff, but for us newbies with no symptoms and no meds, no depression, no nothing, it doesn't "dock".

Being respectful of my elders and especially those who have endured so much during the early days of the disease, I cannot possibly say that Moffie's post was wrong, because I know he is not. But his post may reflect a certain aspect of Living with HIV which some of us are lucky to not experience (yet).

This is why read the LTS forum, and take time to think about posts like this, because although I'm looking for a bright future, I want to be ready if the future darkens. And people like Moffie are the ones that get me ready.

Milker.

[racingmind]

Do you know that the medications do not go through the blood brain barrier, and that HIV loves liviing in the fluid that bathes the spinal cord and brain?  Are you aware that the virus, even with a low viral load, can hide in the intestines where our immune cells are born and thrive under normal circumstances?  Are you aware that the virus kills the cells that buttress the intestines and keep them from leaking into the rest of our bodies?  

Holy Shit ....Even more things to worry about.  Gee thanks.

I think I'll take the advice of my therapist and give these forums a rest.  There are some things that I simply do not need to know at this stage of the game.

[fondeveau]

I don't want to argue with Fondeveau, and I will not.  

However, for those of you who have not questioned your ID "Specialist", I would suggest you study this disease and question everyone and everything.

Do you know that the medications do not go through the blood brain barrier, and that HIV loves liviing in the fluid that bathes the spinal cord and brain?  Are you aware that the virus, even with a low viral load, can hide in the intestines where our immune cells are born and thrive under normal circumstances?  Are you aware that the virus kills the cells that buttress the intestines and keep them from leaking into the rest of our bodies?  Are you all aware that the HAART that we all know and love and have been told makes a "Fatal" disease "manageable" are in fact only 12 years old and none of us know the outcome of living with these medications in our livers, kidneys, and other organs for an protracted length of time?  

And I could get hit by a bus or a gun-wielding criminal could attack me or I could develop multiple-sclerosis, etc.  But, I'm not gonna give limit my life by the possibility that I will die or become disabled tomorrow.

[stratosphere]

Moffie,  i swear you posted this before some time ago,  or maybe I'm going crazy. 

I agree with most of what you said because i know you have been there.  I also feel like i have a more positive outlook on life than you do,  or perhaps they way i perceive you do from this writing.  Call me an optimist,  the glass is always half full with me thank god.  But i do appreciate the great advice you give here,  if people can look past the things you say they don't agree with and take the useful tools you provide for now,  perhaps they can re-visit this again later to perhaps gain more knowledge. 

So now a couple of questions for you if you don't mind:

So am i wrong for drinking bottled water vs "filtered" water?  I ask because i always drank filtered water before but switched to bottled water because i could swear people on sites like this said to do so.

You mentioned elsewhere eating yogurt,  is this for the digestive system or just for the vitamins and calcium in general?  I started eating yogurt because my digestive system seems to be in an uproar I'm assuming the HAART plays hell on the natural acid or whatever in my stomach  and i have very loud stomach growling after i eat on most days,  plus i have some acid reflux at night.  I was told to eat yogurt because it has natural cultures needed for digestive process or something like that

I thank you for your post

God Bless,

[Miss Philicia]

If you can be sure that the bottled water doesn't have crypto in it it is safe.  Something tells me you probably can't tell on the label though... I don't buy bottled water myself, or not often, though I don't hyperventilate about crypto and haven't for a while because my numbers are good.  I still filter all of my water at home though, just out of habit when I had teh AIDS.

[Central79]

Like a lot of Moffie's posts this one set up quite a few conflicted feelings. On one hand I strongly believe in the ability of medical science to cure this disease in my lifetime: I do not expect to die with or from HIV. So it raised my hackles on that front.

But then I started to think about my attitude. Although I believe in a cure, I started thinking that actually it's quite a passive way to think if that's all you're thinking. And that maybe since my diagnosis I've been sitting back, pressed the "pause" button on my life, and have waited for the cure. So for that little revelation, I'd like to thank you Moffie.

I think being pro-active is what this post is all about, and I couldn't agree more. Although some of the detail is a little off-the-wall, it is very true.

I'd like to correct one factual inaccuracy: there are drugs that cross the blood-brain barrier. These include AZT (zidovudine, Retrovir), d4T (stavudine, Zerit), 3TC (lamivudine, Epivir), abacavir (Ziagen), nevirapine (Viramune), efavirenz (Sustiva) and indinavir (Crixivan). In addition, controlling viral replication even just in the blood cripples HIV in the brain, because the virus freely diffuses across the BBB and is destroyed.

Matt.

[StrongGuy]

Personally, my medical advice, my prognosis, and information on medications are areas I discuss with my doctors or health professionals and are the individuals for whom I base my outlook and primary judgement I value (and yes, I believe a cure is possible). Every case of HIV is unique and the array of HIv drugs are all different and many are getting much better than the older fast-tracked drugs of the mid-to-late 90s. That's what I'm told. That's what I see and experience. That's what I believe.

It's like oral Diflucan vs. Ketaconazole -- both are antifungals and treat the same things -- but Keta is known for being much more "toxic"  to the liver (hate that word "toxic" 'cause it is so overused/non-specific and, IMHO, HIV is what should be labeled toxic).  Same can be said for the varying molecules that make up the wide array of drugs that treat HIV. I never understood the premise by which some believe all HIV drugs are bad when they are all different.

HIV drugs and many other drugs that people take for long periods for a wide array of diseases may have unknown effects. Some may occur, some may not. Some may be manageable, some may not be.

Most of what my doctors say contradicts a lot of what the author of this post conveys, but everyone is entitled to his/her opinion and I respect that and it's good to hear varying view points.

As for the water, I drink NYC Grade A tap and I don't filter. My numbers are good and I personally rather keep the chlorine floating in the tap water to kill of the germs while it's sitting in the jug in the fridge. I'm more freaked about the heaby jeebie bugs crawling on the Subway rails (I heart Purell - though it still didn't stop me from picking up that infamous stomach virus this past winter). In NYC you can't recycle the plastic water bottles (who knew!) so I've steered clear of bottled water for awhile anyway.

Mike
(who is vigilant, but not fearful by a long shot)

[Moffie65]

I suggest and request that all further questions and discussions on this thread be addressed to Mattmee, and Strong Guy.  These two people are obviously far more informed and intelligent about HIV issues than this poor old asshole.  I really try here to be a voice of reason and experience, but at least one of these is my nemisis, and after a very very long silence, Strong Guy just couldn't leave well enough alone with this thread, so from here on out, please ask your questions from this pillar of knowledge and strength.  I am obviously not qualified, nor am wise enough to deal with HIV, as I have no experince at all.

Blessed be the all knowing!!!!!!!!!!!!!!!

[David_CA]

Now Tim, don't go and get your feathers all ruffled!  Most of us dealing with this nasty little virus have some insight to offer... even I occasionally have something helpful to offer after just over a year of diagnosis and a few months of HAART.  Multiply that by the 20 something years of experience you have in living with it and I think we all know you have a lot to offer.  Take care.

David

[Iggy]

I never understood the premise by which some believe all HIV drugs are bad when they are all different.
HIV drugs and many other drugs that people take for long periods for a wide array of diseases may have unknown effects. Some may occur, some may not. Some may be manageable, some may not be.

Mike,

You seem to be adding the word bad here where it does not belong and making false and misleading statements about effects and manageability.   I didn't see Moffie or anyone imply that the drugs were bad.  He and others have been honest about the reality of the potency of the very medications many of us take to stay alive - something I'm sure any legitimate doctor would agree about.

It is a proven fact that all medications DO have side effects and there is no debate on that issue - none.  Perhaps you could spend a moment reading http://www.aidsmeds.com/list.shtml the information on this site for starters before you respond again.

The bottom line is not you, your doctor,  me nor moffie can tell you what is going to happen to you today, tomorrow or 20 years from now - however the overwhelming proof and accepted conventional wisdom  and experience by most of the scientific  and medical community is that the potency of medications that we currently take to prolong our lives do in fact have various negative effects on our body - some short term and some long....some minor and temporary, and some building and devastating, but the issue of there being effects is really not news nor controversial and there is no "may" about it  - it just is.

As far as the cure, what I read Moffie saying is actually quite tame if you really think about it:

I think it is very important here, to bring up a critical point about “curing” HIV.  It is crucial to remember that this virus becomes a custom virus very soon after infection; taking on RNA and DNA of yours, which means only one thing.  If the virus is blasted with some newly discovered chemicals, there is a probability that it will also blast your immune system, therefore killing you.  Consequently, there is no way to cure HIV as of yet, without killing the host at the same time.

  What I see Moffie saying is what I have been reading over and over on this board by others and in medical journals: we can not cure HIV (aka removing it from our system) as the virus is so integrated into our very DNA.

This is why everyone is so hopeful on Gene therapy being discussed which I might remind all is NOT about getting rid of the virus from our body but about shutting it off while it remains forever a part of our structure.

And that is the truth
 

[RapidRod]

StrongGuy, show me an antifungal medication that will not cause kidney failure. I've been on them all and they all list kidney failure as a possible side effect. Now I'm on Noxafil, which too causes kidney failure. I have no choice, dying now or take my antifungal medication and take my chances on kidney failure. I believe everyone knows what my decision was. I'm still alive.

[StrongGuy]

Moffie I am just expressing my view point. The fact that it differs from you is OK and this is a discussion board and that is all I'm doing. I stated that I believe your opinion should be respected, even though a lot of what you say is contradictory to what I am told, see and experience. I have a feeling you rather I keep quiet because when I make a comment you don't like you appear to get angry instead of engage relative to the topic. Please don't make this personal, because I am not fighting with you. When it digresses to attacks rather than discussion, I just report it. It's a discussion, we're not changing the world here.

Iggy Iggy Iggy I am well aware all meds for HIV have sides. I never said they don't. All medicines for various diseases have sides on differing scales. That was part of my point. I"ve read many many lessons,  but thanks for the link (I think). And I never said Moffie said ALL HIV drugs are bad. Please re-read what I wrote and I'd appreciate what I said not being contorted. Thank you. And "truth" is relative.

Rapidrod I brought up those two antifungals because I have been on both, and I referenced it in regard to liver issues (not kidney).  The occurence for all antifungals is not the same in terms of severity of side effects and the amount it occurs within a population. That's the data. That's all I'm saying. And that was my point in making a comparison that not all HIV drugs are the "same."

Anyway, like I said, I am just expression my POV -- as I have every right to. Nothing personal, just my take on it.

Peace...
Mike

[Peter Staley]

I suggest and request that all further questions and discussions on this thread be addressed to Mattmee, and Strong Guy.  These two people are obviously far more informed and intelligent about HIV issues than this poor old asshole.  I really try here to be a voice of reason and experience, but at least one of these is my nemisis, and after a very very long silence, Strong Guy just couldn't leave well enough alone with this thread, so from here on out, please ask your questions from this pillar of knowledge and strength.  I am obviously not qualified, nor am wise enough to deal with HIV, as I have no experince at all.

Blessed be the all knowing!!!!!!!!!!!!!!!

Moffie -- this is pure flamebaiting.  I'm giving you a Time Out (you've been warned many times in the past about participating in flamewars, and this time you have attempted to actually start one).  The postings by Matt & Strong Guy read to me as opinions only, and had nothing in them which could be construed as baiting you.

Peter

[Robert]

It's important for me not to let HIV tell me what to do and what not to do.  Honestly, I really don't do anything  different now than I did before my near-death experience with AIDS (except now I take HAART but even that I do on my own terms, ie. intentionally skip every 8th day.)

For example.  if I'm thirsty, I drink water out of the tap, if I'm inside. Today I was shoveling dirt in the hot sun and couldn't stand it anymore so I drank my water directly from the hose. I drink my mile directly from the carton.  I belive in the 5 second rule.  If I drop a piece of food on the floor, I bend over, pick it up and stick it in my mouth (of course I'm talking about my own kitchen).  Or, if it's a piece of lettuce or spinach, I'll put it back in the bowl.  My dog Boo licks my face every morning, telling me it's time to wake up.  At least once a day I roll my dog Cecil over on her back so she is "belly-up" and then I kiss her on her tummy. 

I did all of this pre-AIDS and I did all of this today.  It's part of who I am and I'm not about to stop now.

robert

[Dragonette]

It's important for me not to let HIV tell me what to do and what not to do.  Honestly, I really don't do anything  different now than I did before my near-death experience with AIDS (except now I take HAART but even that I do on my own terms, ie. intentionally skip every 8th day.)

For example.  if I'm thirsty, I drink water out of the tap, if I'm inside. Today I was shoveling dirt in the hot sun and couldn't stand it anymore so I drank my water directly from the hose. I drink my mile directly from the carton.  I belive in the 5 second rule.  If I drop a piece of food on the floor, I bend over, pick it up and stick it in my mouth (of course I'm talking about my own kitchen).  Or, if it's a piece of lettuce or spinach, I'll put it back in the bowl.  My dog Boo licks my face every morning, telling me it's time to wake up.  At least once a day I roll my dog Cecil over on her back so she is "belly-up" and then I kiss her on her tummy. 

I did all of this pre-AIDS and I did all of this today.  It's part of who I am and I'm not about to stop now.

robert

Good on you and in my opinion that is what <living> with HIV is all about.

I have spent a long time in Asia in countries like Vietnam, Burma, Laos & Cambodia and the rural parts of Thailand, well into my HIV infection, eating street food, sometimes raw food, occasionally getting sick, bathing in local water and swimming in ameaba infested jungle streams. Did I get sick? Yes. Did other Westerners get sick? Yes and just as much or much more than me. Would I do it now knowing my status? Probabaly not. But the advantage of being diagnosed at an advanced stage ('on the edge of the abyss' the docs referred to it) was that it taught me that I can live and do everything (within reason) and don't need to close myself in a glass bubble.

I'd be more aware now of HPV and other STDs; messing around with cat poop (never a hobbie anyway); cut down or better yet quit smoking [although smoking is so bad, I feel just as guilty smoking with or without HIV] and drinking; less trans-fats and processed food [within reason]; excercise, but over-excercising will lower T-counts; sleeping enough; use water filters when I am in the middle east but drink from the tap anywhere in Europe; and enjoying life as much as I can.

Edited to add: I am just becoming aware of "camps" on this board; but this is not me joining any of them. I think I have something valuable to gain from almost any member of this community especially the long-term survivors. This is just my take, or my coming to terms, with having this disease, which I reached by myself long before I started using aidsmeds.

And now, still using the flu as an excuse to slack off today!

[Iggy]

Robert,

 I too drink water out of the tap and for an agnostic I certainly kiss a lot of dropped-on-the- ground food up to God before shoving in my mouth, and I can't see myself ever washing a banana before eating it - however I think Moffie makes a great point here - why on earth do we take such risks when they could have profound health issues for us and it really takes only a little effort to avoid such things.

I guess I see it as part of the acceptance process of having HIV is to learn to behave in a more aware manner....I don't mean a sense of paranoia or Julianne Moore-SAFEish, but just learning not to do things that in general may not be wise for anyone (such as 5 single malt scotch neats for me) but could really have significant ramifications for me with a lowered immune system.

[Mike89406]

Hmm what I get out this is anyone who is infected unde4rstand that this disease is lifelong, and not to take it lightly.

What my nurse told me on my 1st appt after diagnoses was this is a disease but its up to me how i choose to live and take charge of my own virus. The virus can get me or I can take control somewhat. 

The post is very true and beneficial for newly diagnosed individuals to understand whats going on. Now I would'nt have come out like Moffie but he's right realize this is a virus and theres no cure.

Some people will be symptomatic and some not. Some will die because of what happens and others will live longer.Regardless just remember its not necessarily a death sentence but a wakeup calll to take charge of you're health. While there are some situations/illnesses etc... that cant be controlled there are others that can be controlled.

My 2 cents.

[peter1991]

I'm new to this site, I hope I got the correct person.
Why are you on Antifungal meds? I wad diagnosed with Histoplasmosis and I take Sporanox.
I also tried to reply to question from Rapidrod.
Please feel free to e-mail me at auspetertx@aol.com