POZ Community Forums
Main Forums => Living With HIV => Topic started by: Etay1207 on January 15, 2010, 08:51:41 am
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Hello all, these forums are INVALUABLE for me. I don't know what I would do without you guys. I have a question though. As you can see from my signature, my t-cells are low and my viral load is high. I know that will change if I started taking meds. Are there others on this forum that have low CD4's and no meds who are living healthy lives? I have no OI's and I am the picture of health.
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Etay,
I'm happy for you that you are the picture of health right now, but I believe your playing with fire. With only 71 t-cells and a viral load of almost 500,000 coupled with a cd4% of 10, your at risk for many complications. I believe you should re-think your Doctor's suggestion to start HAART. Once the complications start, your recovery will be a lot more difficult.
I'm wishing you the best, but please don't gamble with this disease.
Let us know your decision. By the way, I have been on medications since 1991 and today (thank god) my stats are: cd4 - 1300, vl -ud, cd4% 43.
Good luck
v
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Believe the science. IF LEFT UNTREATED, HIV/AIDS CAN/WILL BE TERMINAL.
If you don't want to live a long life and don't take the meds, for sure you will become very sick. The HIV has already damaged your immune system and a good bout of the flu, cold, PCP, or any other thing that might come along, may surely kill you. How you "feel" now is of little consequence, but what is going on in your body will certainly catch up in time.
The choice is yours.
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If I was you I would get on meds ASAP. You are doing your body great harm by holding out.
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Etay,
I responded to you in this thread, Back around the 17th of December.
http://forums.poz.com/index.php?topic=5067.msg372376#msg372376
Your t-cells will continualllly drop your viral load will go up, and you are bound to get seriously ill, if you don't get started on meds soon. I know, I've been there !!
Ray
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Hi Etay,
Good to hear you are feeling good even with the horrible numbers. However I am still concerned for you. Please dont equate feeling good/looking good with everything being A-OK. Chances are your immune system is shot and you are a walking magnet for OI's.
Please, please seriously consider starting meds before it is too late. Your situation reminds me of my dear friend Scott. He never took meds because he felt "Great" and always told me he would start the meds when he started to feel ill. He never got the chance to start meds....he suddenly became ill and went to the doctor, they ran a battery of tests and it came back that he had advanced cancer, among other things, pretty much everywhere in his body including his brain. The doctors gave him 2 months. He wanted to start meds but of course it was too late. They sent him home. My beautiful Scott was dead 4 weeks after he started "feeling bad". He went blind lying in his bed 2 weeks before he died. He went into a coma 1 week before he died. It was heart breaking. He was 34. Just a month prior to his death he was happy. It happened that fast. The doctors said the cancer was related to his HIv status.
Please, please consider meds now, before its too late.
-Will
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in the mid 90s, I was feeling pretty damned healthy too with about 100 tcells and a viral load of 600,000 though I had just buried my first partner who had died from AIDS. A few months later I thought I had the flu that everyone else was having too during a February; but it just wouldn't get better. Finally I went to the hospital on my birthday in March where they admitted me. I was down to 5 cells, had a vl around 800,000, and was actually dying not of the flu but PCP. Thankfully after 5 miserable, harrowing days in the hospital, while the doctors pumped me full of meds and my family rushed to what we all thought would be my "death bed", I barely survived; but as my health and immune system were permanently damaged, I've never been the same man since.
Almost two years ago now, my second partner was admitted to the hospital with a flu that he couldn't shake. Sadly, we found out he had undiagnosed, untreated HIV. With a tcell count of 7 and a vl load of 650,000, he also had 3 non-Hodgkins lymphoma tumors and pneumonia. Sixty days of hell in the hospital later, I took him home as it had been too late for the HIV meds or cancer chemotherapy to work. Nine days later he died. All of the people around him were devastated as he had been the picture of health in January but was dead from the AIDS, that we never even knew he had, just about 80 days from the first symptom that anything was wrong.
Ever since then, I realized that with counts like that (like yours), death can easily come within about two months. You have no idea what pathogens are building in your body right now, as the HIV has destroyed your immune system. Tomorrow someone's sneeze or cough nearby could be the germ that proves fatal to you. For a few months, you've been "bragging" about your numbers around here. Unfortunately, over and over from the people who have been in your position with those kinds are numbers, you're not going to get any "approval" but you are going to get the same reaction - that you are playing with fire and are very close to being burned - if it's not too late already. Of course, I really do wish you the best and would hope that you would start treatment ASAP; but I won't be surprised to hear it when the worst befalls you if you continue to not treat your HIV.
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I am curious - since you have your labs - you are seeing a doctor. What does your doctor say about your choices? She / he is an EXPERT, more than most of us here - who are experts in another way - living with hiv.
You know, this is a public forum. Honestly I can't imagine any doctor advising you to have waited so long for HAART. If you get one or two people here who support you, it's sending, in my opinion, a pretty poor message to whoever falls on these pages.
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That viral load is too high (causing great damage to your system) and you are now under 100 CD4. If you want to continue feeling well then it is seriously advised that you start treatment. If you are afraid of side effects or the fact that meds are a a lifetime commitment you need to discuss it openly with your doctor. Don't waste too much time just because of fear. It will be very unusual (and irresponsible) for any of us to advise you otherwise.
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As Mecch pointed out above - since you have your labs, you must be getting some sort of medical care. So, that begs the question...is your doctor trained in any way at all when it comes to HIV? Is s/he even an HIV specialist? A couple weeks after my HIV+ diagnosis, they told me that I had an AIDS diagnosis - even though I felt pretty good, I wasn't sick at all, I went on meds immediately after that - without questioning it. You, my friend, have an AIDS diagnosis - is that a wake up call at all to you?
I'm quite shocked to see that being poz for 10 years would even lead you to the question you're posing to us??? Since you have the data...ask yourself WHY have you even bothered to track your numbers for the past 10 years? Most everyone else on here tracks numbers as an indicator or when to go on meds, or to make sure meds are doing what they're supposed to do.
For someone who has shown to have access to medical care for the past 10 years, there is no reason to be walking around with such a compromised immune system. Ask around to those who have had opportunistic infections...they're not fun! Did you know that you can "feel pretty good" and have a cancer metastasizing inside of you? I'm afraid to say that without medical intervention my friend, you're well on you're way to a serious illness or a premature death.
I wish you well.
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Dear Etay,
I tested positive in 1985 and had regular medical care and monitoring with an ID doc. For a variety of reasons, I stopped that care and monitoring in 2000 with a CD4 count of 788 and viral load of 7590. During the following 7 + years I felt invincible, my wife and I were raising two children, I ran a successful general contracting company, I was renovating a huge weekend home and NEVER got as much as a sniffle. I smoked, drank and ate whatever / whenever. In mid 2007 I began to experience skin problems, itching and inflammation from the waist up. I was in what my therapist called "a stunning case of denial". By December I was hospitalized and diagnosed with PCP, Thrush and AIDS Wasting Syndrome. I had a CD4 count of 54 (don't remember the viral load) and nearly died. Because of my actions (better to say inaction) the HIV destroyed my thyroid and testicles (and who knows what else).
Why would you not take advantage of the knowledge, science and experience before you? So many good and deserving people and their lovers, spouses, families, friends, employers etc. have suffered immeasurable pain and indignity because we did not have the knowledge, science nor experience with this hideous disease. Please ask yourself why you choose inevitable pain, suffering AND DEATH over LIFE.
In retrospect, I wish someone would have shaken me out of my "sleep".
With love and respect,
Richard
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This is akin to running across a 10 lane interstate fifty times and not getting run over and then trying to convince the world that what you're doing is safe. It's really nothing more than a case of AIDS denialism, though in this case more "denialism-lite" I suppose as you're not coming out and just stating that HIV is harmless, but almost.
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Right on Miss P!! - I've been thinking that, or even wondering if the OP is just putting these posts up for shock value. You're the one to "lay it on the line" so to speak.
Thanks!
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Thank you guys for your replies. I appreciate the concern and advice. I've been monitoring my labs as you can see for quite awhile now. I know what the medical community says about low tcells. I've been reading, studying, and seeing my doctor for 11 years now. Though I appreciate your concern, I did not make this post for advice. Thank you again.
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Etay
Are you perhaps reading too much into your experience to date? Up until quite recently you had very healthy tcell counts. And while they were healthy you didn't have any health problems. That's pretty consistent with the science that says the short term risks of death or serious illness are quite small for higher tcell counts (although the virus is eating away at you then -- it is likely to show up later).
But you have had next to no experience with living with low tcell counts. You only went under 100 a few months ago and life gets even riskier under 50. Your experience of the past decade is perfectly consistent with what all the rest of and science suggest for people with a normal tcell count.
But you no longer have a normal tcell count.
Instead you have reached the territory where studies show about a 30% chance of death or crippling disease each year.
...
You posted asking for people who are currently living healthy with a long term history of low tcell counts and no medications.
You haven't found any.
The only ones you are likely to find are those, like you, who have recently dropped part way into the danger zone and have been lucky so far.
But you can't roll 70% on the dice each year.
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Hello all, these forums are INVALUABLE for me. I don't know what I would do without you guys. I have a question though. As you can see from my signature, my t-cells are low and my viral load is high. I know that will change if I started taking meds. Are there others on this forum that have low CD4's and no meds who are living healthy lives? I have no OI's and I am the picture of health.
Thank you guys for your replies. I appreciate the concern and advice. I've been monitoring my labs as you can see for quite awhile now. I know what the medical community says about low tcells. I've been reading, studying, and seeing my doctor for 11 years now. Though I appreciate your concern, I did not make this post for advice. Thank you again.
It was pretty clear in your first post that you were asking for advice. You got advice, but obviously not what you wanted to hear.
It's sad that you seem to be hell-bent on self destruction, but if you want to continue in your denial, that's your right. Hope you don't linger on your deathbed for too long - it won't be much fun and you certainly won't be the "picture of health" for much longer. Sad.
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Etay,
I will respect your statement for no more advice, however, I would like to ask you a question: Are you taking any type of extra-ordinary measures or homeopathic remedies?
You seemed to have controlled your virus pretty well until the last couple of labs, but your numbers are in the danger zone now.
For myself, medication was the only way I could build my numbers to their present level ,along with healthy living and a good diet.
v
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Veritas, my numbers were excellent until I got a flu shot. ::) my doctor tells me all the time of the horrible things that will happen to me. I take a good multivitamin and garlic but I'm not crazy about taking a bunch of suppliments. I just live a good, clean life.
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Etay,
Fair enough. I wish there was something I could say to change your mind, however, I wish you well.
Please keep us posted on your progress.
v
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Etay,
I too, like sdguy, was wondering if you are for real. While I can understand being in denial (as I was for so many years), I cannot understand being in denial AND knowing your CD4 and viral load results have you literally at death's door.
I had 22 years of my body telling me that I was the picture of health. In the early years of my diagnosis there was much talk by my doctor and others of long term non progression and that I very well could be one. Of course, I latched onto that theory for dear life.! That coupled with living in a very heterosexual environment where HIV AIDS was rarely spoken about or the ravages of the disease seen, I ended up as I did.
Something about this story is not right under any circumstance.
My fear is that someone may be inspired by your "story" and act in a similar irresponsible fashion. My hope is you are alone in the world and have no relations or dependants that will ultimately suffer from your arrogance and stupidity.
Richard
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Assurbanipal: I have found many, just not on this site.
Ann: reread the post. I wasn't asking for advice.
Rioz: I'm not saying that HIV is not an issue. But you did state that you smoked, drank, and ate whatever. Nobody can keep that type of lifestyle and remain healthy.
Sdguyloveslife: yes, my doc is an HIV specialist.
Veritas: of course I'll keep u updated.
Now my question for everyone who has replied thus far. Why is there such hostility? I highly doubt you would feel so strongly if I were smoking, not getting proper rest, or eating unhealthy. All of which will send you to an early grave. Why are we allowing my choice to not take HIV medication to cause a disturance between our correspondence with each other?
Sorry for such short answers. I am still at work and don't have time for thought out answers.
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Since your at work get off the computer and go do your job. I am not buying any of this Mr. Jersey.
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Now my question for everyone who has replied thus far. Why is there such hostility? I highly doubt you would feel so strongly if I were smoking, not getting proper rest, or eating unhealthy. All of which will send you to an early grave. Why are we allowing my choice to not take HIV medication to cause a disturance between our correspondence with each other?
I think what you're reading as hostility is actually frustration and concern on the part of those who took the time to respond. I debated whether or not to enter the fray of this thread because it really is so hard to believe that it almost seems as if you might be pulling our collective leg.
Etay, if you are indeed for real, you should realize that those numbers you have posted do in fact tell a story: consistently declining CD4s and consistently rising viral loads, the classic recipe that leads to a death from AIDS if left untreated. These are not "opinions," but cold hard facts.
While your viral load was still relatively low and your CD4s were in the triple digits, you could get away (barely) with no meds. At this point, with a very high viral load and double-digit CD4s, there is nowhere to go but down unless you start meds.
It's not rocket science or brain surgery, it's actually very straightforward and simple.
I hope you don't die soon but I do hope this thread does.
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... because it really is so hard to believe that it almost seems as if you might be pulling our collective leg.
Exactly !! This will be my last response. Etay, I suggest you read the lessons, starting here :
http://www.aidsmeds.com/articles/WhenToStart_4754.shtml
Ray
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Why is there such hostility?
Hostility?
I tell you about my, not one but TWO, partners who died with numbers like yours from untreated HIV, and I back it up with my own story of being hospitalized and nearly dying myself with numbers like that because my HIV was untreated, and did you see that as hostility? Not only are you wrong about your course of in-action (ie not taking meds) but you've grossly mistaken scientific fact, compassion and concern for hostility.
I highly doubt you would feel so strongly if I were smoking, not getting proper rest, or eating unhealthy.
your strawman arguments are no good. None of those things is a terminal disease. True they can eventually shave a few yrs off your life. However, HIV when it reaches the AIDS stage is a terminal disease resulting in death usually within 18 months or so. I saw hundreds die like that in the late 80s and early 90s. You're not any more "special" than them, so you should be expecting what happened to those that died early in this epidemic without meds to happen to you too.
Dude, I think we're all just telling you that you're a fool and will probably end up dead soon unless you change your ways. (the clock is already ticking away on those 18 months) But go ahead and ignore science and ignore the multiple accounts of anecdotal evidence we've presented to you. I know you're already ignoring your doctor's advice.
One last thing to ponder as I leave you to your own devices, think about all the things people here have said, the things you're read online, and the things your doctor has surely told you. Can you honestly say that all of us are wrong, while you, alone, are the only one right about your course of action? Does that sound logical to you? Are you so sure you are that right? I promise when you find out how wrong you are and you're lying in the hospital I won't say I told you so, but I'll be thinking it. ;)
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Etay1207,
I don't know what keeps you from not taking the meds that would permit you to live long and like anybody else. With all the poisons we eat, drink and smoke, this HAART drugs will not make any difference but on the contrary they would keep you alive and make you feel even better. This if you're concerned about toxicities and side effects.
Consider that there's very much interest now in finding a cure and perhaps over the next decade something will pan out. Wouldn't it be very sad if you should die earlier without the chance to be there celebrating this revolutionary event?
I was reading a question on thebody.com website from a reader who is also very tired of the current meds and Dr. K. Henry, a researcher who is mostly very caution about future developments in therapy gave an answer which leaves hopes for next years. It seems that there's really a change coming soon. Be there to see and feel it!
Read it here:
http://www.thebody.com/Forums/AIDS/SideEffects/Current/Q205777.html
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Etay,
I surrender!
Not just yet.
I WAS one of the (you say many, I say few) LTNP's for 22 years UNTIL two years ago.
You DID ask a question and you did get answers. If you care to argue the formal, lexical or conceptual semantics of advise vs. question, check with your local English professor.
HIV IS THE issue. Again, not the argument of how much one drinks or how healthy one eats.
You have an AIDS diagnosis and therfore YOU HAVE AIDS!
AIDS IS THE ISSUE!
RESPONSIBILITY IS THE ISSUE!
I don't see any hostility here, I see anger and frustration with your arrogance and ignorance.
Have you watched someone you love die of AIDS? I have had many friends and lovers die of AIDS. The sum total of death and suffering witnessed and experienced by the good people on this forum is one of the greatest human tragedies on this Earth.
Now I surrender because quite frankly, I think your story is bogus.
Richard
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etay
People are getting upset because they have witnessed many lingering deaths.
There is also a passive/aggressive element in your stance and in your ? about why are people getting upset.
theyer
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Assurbanipal: I have found many, just not on this site.
Because here you will find INFORMATION and SUPPORT (when granted), not denialism (which is what you seriously verge on) or advice that could cause other newly diagnosed people to make ill-informed decisions.
Ann: reread the post. I wasn't asking for advice.
Then what did you want? Someone to say "yay, I agree with you on the fact that you can stay in AIDS-land, with barely any CD4 and still claim to be the "picture of health" (of what sort of health?)". Again, wrong place, mate.
Now my question for everyone who has replied thus far. Why is there such hostility? I highly doubt you would feel so strongly if I were smoking, not getting proper rest, or eating unhealthy. All of which will send you to an early grave. Why are we allowing my choice to not take HIV medication to cause a disturance between our correspondence with each other?
Was there hostility in my response? In Mikie's? In Miss P.'s? In Veritas'? How dare you? You are the one who flippantly says that you do not want "advice."
I'm done with this thread. Take your rubbish someplace else.
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Now my question for everyone who has replied thus far. Why is there such hostility? I highly doubt you would feel so strongly if I were smoking, not getting proper rest, or eating unhealthy. All of which will send you to an early grave.
You are equating untreated HIV/AIDS with a lack of sleep and unhealthy eating habits. In the very short term the former is much much more dangerous than the latter. At what point will you decide you need to get on meds? When you are on the respirator in the hospital? I would kill to have had the knowledge of my counts while they were as good as yours used to be so that I could have gotten onto meds sooner and spared myself some of the hell that I'm going through right now.
Look back through this thread and ask yourself how many of these people think you're doing the right thing.
I hope you come to your senses before you get seriously ill.
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Now my question for everyone who has replied thus far. Why is there such hostility? I highly doubt you would feel so strongly if I were smoking, not getting proper rest, or eating unhealthy. All of which will send you to an early grave. Why are we allowing my choice to not take HIV medication to cause a disturance between our correspondence with each other?
Sorry for such short answers. I am still at work and don't have time for thought out answers.
You know what Etay? If you didn't want advice, then I retract what I said. I should know better than to try to fix another person. But the fact is that too many of us on this board know what a death from AIDS looks like.
Keep us posted and be sure to post pictures of your "picture of health" self when you have raw KS lesions opening up on your face ;-)
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Etay if you don't wanna take medications then that's just fine. Don't take 'em. I've been there and done that.
You might feel healthy now, but you're not healthy. A CD4 count of 71 is not healthy by any stretch of the imagination. But it's your call. Some people walk around for ages with low CD4 counts feeling just fine.
Eventually you'll stop feeling fine.
But know this: the first OI that visits you may not be something relatively innocuous like candidiasis or even KS. It might be MAC. It could be Progressive Multifocal Leukoencephalopathy (PML) or Histoplasmosis. Look those words up.
Whatever happens, it's ultimately a matter for you. But you won't be able to say you weren't warned.
MtD
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It might be MAC. It could be Progressive Multifocal Leukoencephalopathy (PML) or Histoplasmosis. Look those words up.
Yikes . . . that's some scary ass shit. It does make KS and candidiasis and even PCP sound like a walk in the park.
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Ann: reread the post. I wasn't asking for advice.
You said "I have a question though." Where I come from, that's tantamount to asking for advice. I come from Planet Earth, where people with counts like yours and access to life-saving meds take those meds so they can remain "the picture of health". What planet do you come from?
Ann
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Are there others on this forum that have low CD4's and no meds who are living healthy lives?
hi etay,
personally, i don't recall having come across any such persons in my short 5 months here on the aids meds forums.
an aside, i see that you are aware that your numbers would be different on hiv meds. i'm curious. what are your reasons for staying meds free?
max
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Etay, I realize your specific question "Are there others on this forum that have low CD4's and no meds who are living healthy lives?" is looking for more "factual" information than "advise."
While I personally don't recommend going without meds, I recall there was a study conducted at the University of Miami regarding patients with low cd4 counts who remained asymptomatic.
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I recall there was a study conducted at the University of Miami regarding patients with low cd4 counts who remained asymptomatic.
more information about that study is here http://www.aegis.com/pubs/aidswkly/2002/AW020104.html
Dr. Gail Ironson and colleagues at the University of Miami and the University of California at Los Angeles investigated the possibility of "an immune component that protects a relatively rare group of HIV-infected people with very low CD4 cell counts (less than or equal to 50 x 106/l) who have prolonged asymptomatic periods."
Natural killer (NK) cell activity may help make up for CD4 cell deficiencies in asymptomatic patients, the researchers found.
Ironson et al. studied a group of 30 untreated HIV patients who remained asymptomatic for nine months despite extrememly low CD4 cell counts. They compared their immune activity to that of treated patients with CD4 cell counts between 150 and 400 x 106 cells/L and healthy controls, according to the report.
and more on the same study here (http://www.sciencedirect.com/science?_ob=ArticleURL&_udi=B7581-47W63XG-TD&_user=10&_rdoc=1&_fmt=&_orig=search&_sort=d&_docanchor=&view=c&_searchStrId=1168295858&_rerunOrigin=google&_acct=C000050221&_version=1&_urlVersion=0&_userid=10&md5=639c5926c26afeaae4c11bb9dbc638ce), though you'd have to pay to actually read the full report
Abstract
A 5-year research project has compared psychologically and immunologically long survivors with AIDS as well as HIV+ persons who have remained healthy in the face of very low CD4+ cell counts with a group of HIV+ persons without symptomatic AIDS and CD4 counts between 150 and 500 mm3. Long survival is characterized by a collaborative relationship with physician, and religious/spiritual coping. Optimism characterizes healthy HIV+ persons with low CD4 counts, whose health may be protected by the unusual preservation of normal levels of natural killer cell cytotoxicity (NKCC). Refusal to perceive disease as imminently fatal and coping well with loss correlate positively with NKCC and negatively with viral load; toleration of loss correlates positively with CD4 count. Both specially designed self-administered tests and rated semistructured interviews are useful in discerning psychosocial factors related to health and long survival and their biological correlates.
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Thanks, Dennis! I appreciate it.
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I smell a denialist troll
I hope you are living in a bubble because walking around NJ is this frigid weather with 71 Tcells, 10% ratio and over 500K copies of a virus, you might just drop dead. I hope you don't take the train, bus, or ferry into NYC for work. You are just asking for trouble.
I am glad you are feeling fine which is kind of a silly way to predict how your immune system is performing.
Also, did I miss why you don't think you need to take meds? I mean, if you have 1 tcell, will you decide to take them then? Do you think they don't work?
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more information about that study is here http://www.aegis.com/pubs/aidswkly/2002/AW020104.html
and more on the same study here (http://www.sciencedirect.com/science?_ob=ArticleURL&_udi=B7581-47W63XG-TD&_user=10&_rdoc=1&_fmt=&_orig=search&_sort=d&_docanchor=&view=c&_searchStrId=1168295858&_rerunOrigin=google&_acct=C000050221&_version=1&_urlVersion=0&_userid=10&md5=639c5926c26afeaae4c11bb9dbc638ce), though you'd have to pay to actually read the full report
Hmm. A study from 2001. I'd been interested to see how many of the Asymptomatic 30 are still rocking on.
MtD
(Who knows stale research when he sees it)
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Hmm. A study from 2001. I'd been interested to see how many of the Asymptomatic 30 are still rocking on.
MtD
(Who knows stale research when he sees it)
A search of current research projects at the University of Miami show this project is still being conducted within the College of Psychology. It can hardly be considered stale.
http://www.psy.miami.edu/research
http://www.psy.miami.edu/graduate/health/research/nimh_lts.phtml
However, the study appears to focus mainly on stress and the affects HIV individuals. HIV positive people who have low CD4 counts (<100) and are clinically asymptomatic (no CDC 1993 category B or C symptoms) just happen to be 1 of the 3 groups studied.
I agree, though. It would be interesting to see if any of the original participants from that group are still alive and kicking today without meds.
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I'd been interested to see how many of the Asymptomatic 30 are still rocking on.
one description of the study said it was a 5-yr research project while the other says it was only 9 months long. If perhaps this portion of the research was only 9 months long, perhaps it was on humanitarian grounds because the subjects were finally becoming ill? I'd love to know more about this study ;) (thanks for the additional info Dennis ;) )
Who knows Etay perhaps you are one of those incredible few who can survive some unknown amount of time with low tcells and a growing viral load. you're taking an awfully big risk (perhaps death) for your chance to be a "special" one in a million case.
Also, did I miss why you don't think you need to take meds? I mean, if you have 1 tcell, will you decide to take them then? Do you think they don't work?
I too wish you would spend a little more time on the forum, and explain your reasoning for not taking the meds. It just seems so odd that you would even bother going to have labs done if you weren't planning to use that knowledge on when to start taking meds. You've been talking about your counts here for several months, but never quite seem to explain why you choose to ignore common wisdom and continue without starting meds. You really should take the time to explain yourself, and maybe you wouldn't be the burnt of such hostility concern. From you limited replies, you sound much more like a AIDS denialist posting into a forum of HIV/AIDS support.
Or did you plan on going onto meds one day; but have been waiting because you haven't gotten "sick enough" to start? The science clearly shows that going onto meds before you become seriously ill improves your chances of survival and a healthier future. So once again it just seems odd that you would bother with the science of monitoring your counts and yet ignore all the other science of when to start the meds.
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If you're not using your lab tests to make treatment decisions, then why are you bothering to get them? It appears that you're attempting to prove to yourself that lab tests are worthless. Good luck with that.
Eating well, exercising, getting enough rest, and not smoking are all nice, but these measures are not a cure for AIDS.
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one description of the study said it was a 5-yr research project while the other says it was only 9 months long. If
mikie, the more I look at the informaton you linked to, the more I think these are two seperate studies. Although, they're conducted by the same person.
I have access to these journals through the University without having to pay for them. I'll see If I can find further details for you.
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You said you didn't ask for advice. You asked if anyone had low CD4s and felt good. I doubt you'll find many of those. They are either sick in the hospital or dead. You have been extremely lucky thus far to not get sick with anything. I got bacterial pneumonia. My CD4 has been around 800 the last year. I can only assume my CD4 before getting sick was the same or higher. HIVers are more likely to get bacterial pneumonia--I was told I almost died from it. That was with my numbers. I can only imagine if I had gotten it at your CD4 or got something else. I don't think I would have had the same recovery. You are now at risk for PCP, toxo, cancers, and the list goes on. You know all this.
My former partner felt great too until his CD4 was just 7. He almost died with staph infections and other infections. I saw a family friend in 1992 just before he died. He couldn't control his cough from PCP. He had several cancers, too. I've been talking to this guy who quit his meds for 5 years. He said he felt great until he collapsed at Christmas. He now has some kind of brain cancer/tumor. I think you're mistaking "hostility" for strangers caring about you.
I hope you will get on meds without delay. If not, please let us know when things do go way down hill. Or, designate someone you know to let us know when you can't. I know that sounds grim, but it would allow us to be able to share your story when this comes up again.
I worry too much about my situation--way too much. You aren't worried enough. I hope to hear back from you that you came to your senses on this issue. It feels like we are all jumping on you. I feel a connection to all of you and just hate to see something bad happen to you--even though we are strangers.
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I think we sometimes make "downward adjustments" to our definition of FEELING GOOD.
When my T-cells were at 68 and my viral load was at 469,000, I thought I felt all right. I went to work every day. I sometimes went to the gym. I hung out with family and friends. I did all the things I was supposed to, and I thought I felt pretty good.
Once I started treatment, got my VL suppressed and quadrupled my T-cells, I discovered that I felt a whole lot better than when I had your numbers. I re-adjusted my definition of FEELING GOOD to something more akin to normalcy.
But the choice is yours, obviously.
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Hi Etay!
I am also the picture of health and I started taking meds when my cd4 count was 503/25%. As you can see, taking meds does not make you unhealthy, so there is no reason to delay treatment anymore, if that is what scares you... ;)
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Are there others on this forum that have low CD4's and no meds who are living healthy lives? I have no OI's and I am the picture of health.
OK you don't want advice? You just want this question answered? Read between the lines, man! Yes can feel healthy with a destroyed immunse system, but is both an ILLUSION and a TIMEBOMB. When it explodes, you will be very sick, or die. HAART will do less for you than it could now. I
Some of the responses did not take into account your recent labs. Yes, its only a few tests that your CD4 has dropped into the treatment zone. But it has recently dropped very very low indeed.
Once again, you do NOT mention what your doctor says about the situation.
What exactly are you fishing for here. People to tell you they live healthy lives with no immune system and actif HIV.
Well, you will find more people who will agree with you if you join a denialist forum.. Go read about Christine Maggiore and hook up with her surviving deluded supporters.
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Hi Etay
I too am the 'picture of health' and have been lucky enough to never suffer from an OI.
I got my diagnosis a few months ago, and went from 357 to 286 to 249 in a short time.
I was originally scared to take an HIV test, because I suspected the result and was worried about my outlook.
But I have now started the meds - they are really not that bad at all and my numbers are improving.
My only regret was not finding out sooner as I feel the 357 may have been a 'high' reading and I may have benefitted from starting meds earlier - the numbers are clearly a downward trend and I could have dropped to your numbers very quickly.
If I was in your shoes I would be very worried about my long (and indeed short) term outlook now, regardless of how I felt.
I just wish I had your history of numbers, as if it had been me I would have taken action much sooner.
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Something isn't right here. I don't know you Etay and I haven't read through every post here. But with a count like yours, is your doctor not recommending meds for you? Or is the doctor recommending them and you're simply not taking them? If the doctor isn't recommending meds, then you need to switch doctors. If he/she is recommending them, then the only conclusion I can come to about you is that you have a death wish, or you live in some bubble that is protecting you from all sorts of pathogens...etc.
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I did not make this post for advice. Thank you again.
So why did you do it in the first place?
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Hello all, these forums are INVALUABLE for me. I don't know what I would do without you guys. I have a question though. As you can see from my signature, my t-cells are low and my viral load is high. I know that will change if I started taking meds. Are there others on this forum that have low CD4's and no meds who are living healthy lives? I have no OI's and I am the picture of health.
1) his question is: " Are there others on this forum that have low CD4's and no meds who are living healthy lives? " => He wants to get in touch with others in similair position.
2) his vision on this disease: "my t-cells are low and my viral load is high. I know that will change if I started taking meds. => He is not an AIDS denialist, but for reasons not clearly disclosed has chosen not to start meds. While I may disagree with this, at least I have the decency to RESPECT his choice...and so should all of you !
Why this collective urge to start a feeding frenzy ? Give the guy a break !
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Thank you, Grasshopper!!!!!!
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Why this collective urge to start a feeding frenzy ? Give the guy a break !
perhaps you too should read the Lesson about "When to start meds (http://www.aidsmeds.com/articles/WhenToStart_7512.shtml)" so you'll understand the danger zone that Etay is in with counts like he has.
I have written my posts because all of my friends and partners that have died from AIDS, all had counts very similar to the ones Etay has. I very nearly died with counts like that a few times, and only because of the meds I am here today. Etay is very much in a "danger zone" and seems to be denying the science that says he should start meds (well, that he's past the point of starting meds) to stay alive. Though he's not in denial about having HIV, as illustrated by him continuing to have labs done, he does seem to be in denial about taking the meds.
Our "feeding frenzy" as you call it, is because we'd really hate to have to add the name "Etay" to the list of those whom this disease has killed off.
I see that you're back online (sat 1:52 1/16) Etay and really hope that you can get some time to answer some of the questions that we've raised about your choice to not start meds. Thanking people who vaguely give you support doesn't really help the rest of us to understand why you are making the choice that you are. As I mentioned before, you should be able to see that your current choice flies in the face of science and logic. Our "advice", though perhaps unwanted by you, is only given in the spirit to keep your from harm's way or from death as many of us have seen happen more times than we care to remember. Best wishes!
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perhaps you too should read the Lesson about "When to start meds (http://www.aidsmeds.com/articles/WhenToStart_7512.shtml)" so you'll understand the danger zone that Etay is in with counts like he has.
If only you had taken the time to read up on me, you wouldn't have stuck your foot in your mouth with that remark.
Have you been hospitalized as many times as I ? Have you had your lab results read CD4 0 (zero!) and VL hovering between 2 and 3 million for 2 years ? Have you ever had to empty a syringe with Pentobarbital in an IV to euthanize your dying partner because the doc chickend out at the last moment ?.......guess not.....so don't even think that you can teach me anything about this shitty disease.
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1) his question is: " Are there others on this forum that have low CD4's and no meds who are living healthy lives? " => He wants to get in touch with others in similair position.
He's not going to find many, as most people with numbers like his don't survive very long without meds. That's what we've been trying to tell him.
His actions seem less like an informed choice and more like a delusional idea that he's somehow immune to OIs even though all the scientific evidence we've collected in the past 30 years tells us he's going to succumb sooner or later, regardless of how he feels today.
To go along with his delusion is to enable him in his unhealthy actions.
Ann
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An observation about whether the OP asked for/should receive advice.
The very act of opening a thread invites response. That's the purpose of message boards. People may not appreciate the responses they receive, the unvarnished truth rarely being welcome, but like it or not that's how these things work.
Moreover a forum such as this one is advice oriented. That's why people come here, so it's not surprising that many who have responded in this thread have done so with advice. Gratuitous or otherwise.
Opening a thread here and then saying "I wasn't asking for advice" in the face of the responses is a bit like tapping another one's foot under the stall wall and then objecting to what gets poked through the glory-hole.
Or somesuch,
MtD
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Again, what is your reasoning for not taking meds? Have you spoken with you doctor about when/if you are going to start meds.
Maybe if you explained your decisions that seem delusional to most of us, you wouldn't be met with so much hostility?
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Excuse me for a quick highjack Etay. Someone here thinks that they are special and needs to be put in their place.
guess not.....so don't even think that you can teach me anything about this shitty disease.
Au contraire mon amie. IF you had read up about ME you wouldn't have written such a foolish sounding post. I've had cd4 counts at 5, 7, 12, 56, 64 with viral loads not quite a million (875,000; 740,000, 680,000). I've put 8 of my 11 cocker spaniels to sleep to sleep. (ah the joys of being friends with a vet) I cared for, not one but TWO, dying partners in my home (14 yrs apart) and yes it was me that administered the pain meds, thank you very much. (Jim didn't even die two years ago and I lost the car and our home because of his passing) I've lived with an avg 176 tcells for 17 yrs and have only been undetectable for 1.5 yr of all that time. There have been times I went off meds because the side effects were so horrendous, and I ended up in the hospital twice and nearly died. I've gone without meds because I couldn't afford them and because with all the resistance issues there literally wasn't anything for me to take. Sometimes I just had to pray I didn't die until something came onto the market.
Want me to start naming off the name of my friends that died from AIDS in the last 20 yrs? Quite of few of them waited until they "felt sick" and they didn't make it. Are you on meds? What prompted you to take them if you are? Don't you think Etay should follow the same medical advice? Obviously by your answer you seemed to imply that Etay should continue to not follow his own doctor's advice (see his past posts) and that we shouldn't point out the fallacy of his logic to not start treatment - that's why I suggested perhaps you needed to learn more.
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In all my time here at AM and living with this virus, I think this is the first time I've seen a person share his numbers, which indicate a trainwreck going on in his body and they not give any form of reason why they are not on meds. No fear, nothing, just plain : I live a "good, clean life" and I am the "picture of health".
Hope he made it to work today.
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Denial is a defense mechanism postulated by Sigmund Freud, in which a person is faced with a fact that is too uncomfortable to accept and rejects it instead, insisting that it is not true despite what may be overwhelming evidence. [1] The subject may use:
* simple denial - deny the reality of the unpleasant fact altogether
* minimisation - admit the fact but deny its seriousness, or
* projection - admit both the fact and seriousness but deny responsibility.
http://en.wikipedia.org/wiki/Denial
Asking this OP for his Doctor's opinion, and his own explanation - but getting no response to either. This is denial. The OP admits the HIV but denies the consequences of the current state of affairs. (Stock-and-trade of the HIV denialists, by the way.)
Want to talk IRONY, instead? The thread is called "Living with HIV".
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In all my time here at AM and living with this virus, I think this is the first time I've seen a person share his numbers, which indicate a trainwreck going on in his body and they not give any form of reason why they are not on meds. No fear, nothing, just plain : I live a "good, clean life" and I am the "picture of health".Hope he made it to work today.
Amen, Skeebo. Also, he seems to only respond to those who somewhat agree with his decisions. This makes me think that maybe this is someone playing around with us.
Either way, your numbers suck so take your meds or prepare for some lengthy hospital stay which will be expensive even if you have insurance.
Also, since you say you live in NJ, you might want do a little research as to what hospital is your better option for care. Hackensack, Holy Name, Englewood, Robert Wood Johnson are all great hospitals. I would stay away from Palisades General (a dump) or any of the hospitals not near a bigger city since they will have limited access to understanding HIV OI and how to treat them. I mean you wouldn't want to sit around a ER with PCP waiting for a bed.
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Also, since you say you live in NJ, you might want do a little research as to what hospital is your better option for care. Hackensack, Holy Name, Englewood, Robert Wood Johnson are all great hospitals. I would stay away from Palisades General (a dump) or any of the hospitals not near a bigger city since they will have limited access to understanding HIV OI and how to treat them. I mean you wouldn't want to sit around a ER with PCP waiting for a bed.
Etay
I'm sorry if you found our replies felt hostile. Honestly, I think we've been trying to be helpful. And you said the forums are invalauble to you ... so is there some other way we can help you prepare for the possibility that things will go more the way most of us expect. Are you looking for info more like that in Pete's post (quoted above)?
I'm in NJ too, but on the other side of the state from Pete, and there are people in Philly, New York and sometimes South Jersey. So, if we can help you prepare somehow (for the contingency of illness) PM or tell us a little more about where you live and what we can do to help.
A
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This thread makes me really sad, n think, WTF? the fight was for what?
Wind the clock back 15 years, I know (or knew) people who did AZT monotherapy, some are alive, some dead. The ones who didn't do triple combo are all dead.
It is a person's inalienable right to decide how their HIV is treated. Yes I believe this.
It is also without question that at CD4 count of around 70 without treatment the risk of AIDS or death in the next 6 months is 25-40%. This is a statistical fact. Clearly, don't necessarily apply to an individual, but this is the odds. Who wants to play these odds?
Yes, an inalienable right, I believe.
Loads of people died who could be walking the green hills in the sunshine now. This makes me sad.
However, some changed their mind n didn't die. This gives me hope.
I reckon the answer to the original question is probably NO.
I don't like to wear glasses but I like to read. I don't wanna take meds, but I wanna see the kids row up n graduate. It's not really about me anymore.
- matt
Now playing: Bodywserve (Warren C remix), M-Gee & Mica Paris
Edited for spelling
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Also, since you say you live in NJ, you might want do a little research as to what hospital is your better option for care.
Has hospice care (end of life care) become commonplace in the States yet like it is here in the UK? Because if it is, he should probably look into which are the better hospices in NJ as well.
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LOL, I think Etay might be a provocateur, like that woman who claimed she gave HIV to 500 people because she was bitter that a cure had not yet been found. It turns out she's negative and wanted to raise awareness. Which she did, apparently many more people than usual went in to get tested in Detroit, where she is from.
LINK:
http://www.latimes.com/news/nationworld/nation/wire/sns-ap-us-hiv-hoax,0,418979.story
(this thread is getting more and more macabre, I don't know whether to laugh or cry)
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I think the website crashed like an hour ago, I tried to respond, and got a time out error:/
In any case, being some one who is young and newly diagnosed, I would *never* believe anything like this to be factual. Especially since you've said that your doctors and everyone around you have been telling you about the dangers of what you're doing. I've been on meds for a year (omg actually this week, I just realized that), and I feel great, my life's going great, and most importantly, I have great numbers. I have a FANTASTIC team of people at my doctor's office, and I would never simply reject their advice because "I feel fine". There was nothing wrong with me what so ever when I began taking my medicine, and my numbers weren't low. I am extremely involved in *every* decision made about my health, and do extensive research on my medication and supplements, but your health care professionals are just that, professionals. And to not even entertain the prospect of beginning a regime simply because you're not currently sick is not only ridiculous, it's just plain stupid.
But I do, however, completely respect your decision. But these kinds of decisions are never based on logic. Having a healthy life style is a plus in your favor, but that's not going to save you. I sincerely hope that this course of action works out for you.
I should also mention that I sincerely hope that people in my position (young and newly poz) don't take this thread in any way, shape or form seriously. I don't know about any one else here, but I've got a ton more schooling ahead of me, and I certainly don't want to leave graduate school and step onto a death bed. :p It is completely with in your right to deny treatment. But ignoring the advice of trained professionals and people who have been in the EXACT same position that you are currently in is invariably asking to die. Period.
One more thing: You keep claiming that you've never been sick, but yet in your video, you tell two stories about how you caught a horrible flu, and also had a parasitic infection. I guess those incidents, in combination with your terrible numbers, don't mean much either.
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I would imagine there is a way for many of you to get your point across without the scare tactics.
It's one thing to point out the facts and statistics, or tell your personal story and allow etay to make an informed decision on his own. It's quite another to suggest someone start looking into hospice care or hoping they made it to work today simply because he refuses to take your advise and see it YOUR way immediately.
I think your points can be made and will be more helpful in the longterm without the morbid remarks.
Lets not forget that I went 11 or so years before I made the personal decision to go on meds. Despite the recommendations of doctors, family, friends, I waited until I got down to below 10 tcells and wound up in hospital with PCP before that decision was made for me. One small reason I waited was because I also felt and looked fine (hint..hint).
The decision of if and when to go on meds is a decision we all ultimately had or have to make at some point. Some of us just happen to make that decision sooner rather than later. And ultimately, we all have to live with the consequences of our decisions.
Is he pulling our leg, as some of suspect? I don't know. I personally don't see any reason to be suspicious. All I currently see is someone with a different outlook or point of view than many here are used to.
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Dennis, do you advise people to wait until they have 10 tcells and get PCP before starting meds because they feel fine? Do you think the guidelines given by the medical community are just to be ignored?
I have asked WHY would you wait so long to go on meds? Why chance getting sick, especially since it has been proven time and time again that the lower your Tcells are, the more horrible life threatening diseases you are at risk for acquiring?
Maybe if he gave any kind of rationale besides "I feel fine" people would be more prone to understand what he is going through.
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I would imagine there is a way for many of you to get your point across without the scare tactics.
No, actually, there isn't. Why? Because HIV is a scary thing, even while on meds, and with good numbers. I'd be scared sh*tless if my numbers began to dip below 100, let alone 71. I wouldn't so much as call them "scare tactics", as they're more cold, hard facts.
But you are right Dennis, if or when to start meds is a completely personal decision. But for him to sit here and paint some rosy picture of not starting meds because he feels fine and has yet to be hospitalized is a ridiculous generalization. That's like saying that there's no such thing as world hunger because you have a pack of top ramen in your cabinet. His not taking meds is totally fine, but his touting his numbers like he's some super hero with the power to have AIDS and not get sick is not. He is going to get sick at some point. It's just a matter of when. You yourself of proof of this.
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Dennis,
Fact of the matter is he posted in a public forum. He is going to get responses of varying opinions. You may slap him on the back and say great job, leatherman may think he's in for trouble, and then you have my simple take calling bullshit. To say we are wrong for not being more open to his decisions or suggesting him to seek a comfotable mattress to die on would be equally as wrong as us telling you not to coax the guy in his ill fated decisions. We respect your open mind concerning this issue just like you can respect us... the right wing and simple minded. ;)
I still got that pocket calculator by the way, those 70 Cd4's are not far off your 10.
Since he's in Jersey we can call him The Real Situation!!
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Pete, no I don't advise or suggest others do what I did (I mentioned that in my first reply here). That's also why I tried to be subtle with my hint in my post above. However, the decisions I made for myself worked for ME (luckily).
And I honestly believe if I followed the "guidelines" that were preached to me in the early 90's I wouldn't be doing as well as I am today. Of course, things are much differenttoday. But then again, that's why they are called guidelines. I don't want to hijack etays thread with a story about my decisions though.
I just think we can respect his current decision (although it differs from many here) and disseminate the information to help him and others reading this thread make and informed decision without the morbid comments.
Dennis, do you advise people to wait until they have 10 tcells and get PCP before starting meds because they feel fine? Do you think the guidelines given by the medical community are just to be ignored?
I have asked WHY would you wait so long to go on meds? Why chance getting sick, especially since it has been proven time and time again that the lower your Tcells are, the more horrible life threatening diseases you are at risk for acquiring?
Maybe if he gave any kind of rationale besides "I feel fine" people would be more prone to understand what he is going through.
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It's quite another to suggest someone start looking into hospice care or hoping they made it to work today
hey, that's nothing different than I told some of my friends in the mid 90s. I'd get them here to confirm that I offered that advice, but since they didn't listen to me, or the instructions from their doctors, they're all dead and can't confirm anything. I mean when you personally see that (low counts end in death) happen hundreds of times, I just can't assume that Etay is going to be the special one to not end up in the grave.
You and me are some of the lucky ones (with the counts we've reached and not taking meds) but think of all the people we know who weren't lucky and aren't here. Are you going to guarantee that Etay is going to be a "lucky one" too, or would you suggest that he get on meds - just like you and I are on meds.
Lets not forget that I went 11 or so years before I made the personal decision to go on meds. Despite the recommendations of doctors, family, friends, I waited until I got down to below 10 tcells and wound up in hospital with PCP before that decision was made for me. One small reason I waited was because I also felt and looked fine (hint..hint).
The decision of if and when to go on meds is a decision we all ultimately had or have to make at some point.
according to your story, you did NOT make the decision. You foolishly waited because you felt fine until you ended up in the hospital and meds were forced on you to keep you alive. You said it right there in your own words. Your story is the perfect argument for showing Etay why he should be on meds. Obviously Etay is probably going to have to learn the lesson the hard way too - just like you did. Hopefully he won't end up dead like countless others just as foolish as you and Etay.
I just think we can respect his current decision (although it differs from many here)
no i don't have to respect a stupid personal decision that goes against the truth of proven medical scientific data and facts.
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Dennis,
Fact of the matter is he posted in a public forum. He is going to get responses of varying opinions. You may slap him on the back and say great job, leatherman may think he's in for trouble, and then you have my simple take calling bullshit. To say we are wrong for not being more open to his decisions or suggesting him to seek a comfotable mattress to die on would be equally as wrong as us telling you not to coax the guy in his ill fated decisions. We respect your open mind concerning this issue just like you can respect us... the right wing and simple minded. ;)
I still got that pocket calculator by the way, those 70 Cd4's are not far off your 10.
Since he's in Jersey we can call him The Real Situation!!
Hey, to each his own. Obviously, based by the lack of replies you all have received, the scare tactics, morbid remarks, and accusations ain't working. So do you keep going down that road or do you try a different approach in order to get your point across and make him realize the urgency?
Perhaps you should upgrade your pocket calculator in for a scientific calculator to get the answer to that last question ;)
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Hey, to each his own. Obviously, based by the lack of replies you all have received, the scare tactics, morbid remarks, and accusations ain't working.
sometimes it takes the truth a while to sink in. ;)
I didn't demand, or expect, that Etay would change his behavior immediately. In my part of the world it's Sat and he couldn't do much about it anyway - unless those prescriptions his doctor wrote out (that he never filled) haven't expired yet. ;) I don't mind keeping up on the "scare tactics" until Etay changes his way or until he ends up dying. I would do the same for anyone trying to commit suicide - which is what Etay is doing in a long round-about way.
And Etay, I do hope that you realize by now that what you thought was "hostility" was simply our respect for perserving life and keeping you from making a terrible mistake that will probably lead to your death in the near future. To me, you don't look like the "face of AIDS", you look like a man that has stepped into the middle of oncoming traffic and I'm desperately trying to persuade you to step back onto the curb and save your life.
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Oh dear, when are you guys going to learn..73 post and only 8 from the OP and in 7 of them all he had to say was "thank you for agreeing with me"..the whole thing is bullshit and you guys fell for it, and before too long you will all be arguing between yourselves and will be at each others throat while the OP sits back and has good old laugh at your expence..
If he has a death wish and doesn't want to take his meds..that's down to him..I think it's time to put this thread to bed and let him get his fun somewhere else.
OP...1
Members..0
Jan
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according to your story, you did NOT make the decision. You foolishly waited because you felt fine until you ended up in the hospital and meds were forced on you to keep you alive. You said it right there in your own words. Your story is the perfect argument for showing Etay why he should be on meds. Obviously Etay is probably going to have to learn the lesson the hard way too - just like you did. Hopefully he won't end up dead like countless others just as foolish as you and Etay.
Can't argue with you too much here. However, HIV meds weren't forced on me in the hospital. I was in from December 24 through January 5th. I didn't actually begin taking meds for HIV until February. But you are correct, the PCP had much to do with my decision.
You'll also notice I put a little hint...hint after my brief synopsis to get across what waiting until a low tcell count can do despite how you feel.
Again, I don't suggest he put off going on meds. I do respect his decision; one only which he can make.
Can you imagine if the AidsMeds lessons were written like some of the "advise" being dished out here.
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Perhaps you should upgrade your pocket calculator in for a scientific calculator to get the answer to that last question ;)
I'm just thanking God that I ain't the one sporting the Terminator glasses.. LMAO! Look folks, they block the bullshit equally as well as the sun!
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I believe if you watch Etay's video in the other thread you will get a better understanding of where he is coming from and why he is not taking HIV medications. I don't agree with his decision not to be on medication but I think I understand the place he is in.
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I'm just thanking God that I ain't the one sporting the Terminator glasses.. LMAO! Look folks, they block the bullshit equally as well as the sun!
LOL! You live in S. Florida. With the amount of bullshit down here you do what you can to repell. You got your trusty calculator. I got my glasses.
Honestly though. Would a bullshitter go as far as plastering his face across YouTube and identifying as the "face of AIDS?" Pretty ballsy I think for someone who is presumed to be pulling a fast one over on us.
When I view the video I see someone who is not fully educated in regards to HIV/AIDS and UNDOUBTEDLY scared on the inside, despite what he says.
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Honestly though. Would a bullshitter go as far as plastering his face across YouTube and identifying as the "face of AIDS?" Pretty ballsy I think for someone who is presumed to be pulling a fast one over on us.
When I view the video I see someone who is uneducated in regards to HIV/AIDS and UNDOUBTEDLY scared on the inside, despite what he says.
Agreed.
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Why is there such hostility? .......................... Why are we allowing my choice to not take HIV medication to cause a disturance between our correspondence with each other?
Because I have seen walking dead men, like you, far too often, and have buried 205 of them.
Etay, you confess to be living a wholesome and "clean" life, yet you cannot, or will not understand that your heart is far from "wholesome". Otherwise you wouldn't be so nasty to those here who have the "actual heart" to respond to your insanity, and do so with such unconditional love for you.
I see and know you are trying to make a point, and to sustain your own ethos, at the same time, making those of us who have lived this life, both the way you are and otherwise, seem so trite. I know many people who lived like you are and wore your shoes. Unfortunately I cannot and will not point you to them because they are already on the other side. DEAD!!!!
If you are not capable of seeing that those of us who have responded to try to steer you in the direction of life, and still think you are THE ONE ON THE PLANET that can conquer this bug with a clean life, then there is no hope for you, and you will soon succumb to this bug, which will with all certainty, kill you.
Where do you want me to send flowers? They will of course be plastic, because fresh ones are far more than I can afford for someone who so obviously desires death over living.
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Lets not forget that I went 11 or so years before I made the personal decision to go on meds. Despite the recommendations of doctors, family, friends, I waited until I got down to below 10 tcells and wound up in hospital with PCP before that decision was made for me. One small reason I waited was because I also felt and looked fine (hint..hint).
Feeling and looking fine is a pretty damn stupid reason when you have doctors telling you that you are not fine. Its fine and dandy to do what you like, make your own decisions.
However, the OP and you, as well, have the obligation in a public discussion to give full disclosure that you are aware that the entire history of this epidemic does not support your decisions as "good for health".
I think you have done so.
The OP has not.
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Why is there such hostility? I highly doubt you would feel so strongly if I were smoking, not getting proper rest, or eating unhealthy. All of which will send you to an early grave. Why are we allowing my choice to not take HIV medication to cause a disturance between our correspondence with each other?
I felt absolutely fine right up till I found myself knocking on death's door. It really did come out of the blue (although I had no idea I was positive).
Most of the posters have either experienced first hand the effects of having such a dangerously low t-cell count or witnessed the effects in others. I think you're confusing hostility with a genuine concern for your wellbeing. With your numbers, not taking HIV medication represents a much greater threat to your health than any of smoking, not getting proper rest, or eating unhealthily.
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etay,
i had previously asked you why you were adverse to hiv meds, but haven't gotten a response yet. accordingly, i've since read some of your recent posts regarding this topic to get a better feel where you're coming from. i couldn't grasp whether you were simply unaware of the likely ramifications associated with your current numbers, whether you're an anti-drug kinda dude in general, whether you want to believe that you're a ltnp or whether you simply want to die. it's hard to guage things through the online medium due to the limited personal interaction thing.
in looking at your posts, two things that stood out to me were: 1) you acknowledged you were envious of another member's cd4 count in the 100's and 2) you said that you were more or less "waiting for a sign that you were sick." from that, i'm guessing that you're referring to a physiological cue of sorts. that's the confusing part for me, as you've already gotten that: your steadiliy declining cd4 and inclining vl counts. your keeping yourself in great shape is likely why you haven't "felt" physically sick, but it doesn't negate the fact that the virus is having it's way with you internally, which you reportedly haven't yet felt. this can be considered akin to a marathon runner, in top condition, not acknowledging that he/she is developing a degenerative & progressive cardiomyopathy despite diagnostic tests showing such, until that runner one day suddenly collapses on the track in full heart failure. whether or not that runner has lost so much heart muscle by this point and that he/she will respond to medical treatment is a crapshoot. if the runner does survive, what will that person's quality of life be like (?), as once that heart muscle is damaged & gone, it's gone forever. 'i'm hoping that you see the parallel here and don't get caught up on the clinical semantics of this example. it's simply a different way of looking at the same scenario.
your thread responders, in varied delivery styles, all express a single commonality: to provide you with education through experience & knowledge about how you can potentially raise your cd4s and avoid a crisis. that's the purpose of this type of forum, and remember, member posts are cumulative and what you say in one thread will carry over to another. rather than seeing their passionate commentaries as hostility, maybe appreciate the time that people have taken out of their lives to support you and give consideration to the common message they are all trying to send your way.
wishing you well.
max
(edited to include) ps: i just watched your vid. in it so you stated that you "embrace" having a 71 cd4. from the following quote, i thought that you felt oppositely: Wow! 121 t-cells? I'm envious! Mine were 71 the last time I had labs done.
and you didn't take meds to treat your parasitic infection? how was it eradicated... was it something self limiting like giardiasis?
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Hey Etay
I just watched your video.
You mention being the picture of health, but other than your numbers telling you otherwise there's other signs there.
You're the same age as I am, and clean living as you say. But it's not normal for a clean living 29 year old to develop parasitic infections - that's got to be a serious warning sign.
And also, maybe its bad light or bad recording, maybe its the long 80 hour weeks or perhaps it's just even me, but your eyes are telling another story.
I wish you all the best
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Oh dear, when are you guys going to learn..73 post and only 8 from the OP and in 7 of them all he had to say was "thank you for agreeing with me"..the whole thing is bullshit and you guys fell for it, and before too long you will all be arguing between yourselves and will be at each others throat while the OP sits back and has good old laugh at your expence..
If he has a death wish and doesn't want to take his meds..that's down to him..I think it's time to put this thread to bed and let him get his fun somewhere else.
OP...1
Members..0
Jan
;)
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Bluemoon,
Watch the video, it does not seem like bullshit to me.
Otherwise I agree we are chatting amongst ourselves, Coffee Talk Linda Richman style.
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This Etay is a clear denialist. He has been jerking all over the (blocked organisation name) forum.
edited by Ann to remove a denialist website reference
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This Etay is a clear denialist. He has been jerking all over the (blocked organisation name) forum.
Ah! ;) Thank you for that information Brad.
edited by Ann to remove a denialist website reference
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Proof is in the damn pudding :
Maybe I shouldn't provide the link.. anyone wants to see just google his name and [blocked URL]exposed.
Said it all along..
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Denial is a defense mechanism postulated by Sigmund Freud, in which a person is faced with a fact that is too uncomfortable to accept and rejects it instead, insisting that it is not true despite what may be overwhelming evidence. [1] The subject may use:
* simple denial - deny the reality of the unpleasant fact altogether
* minimisation - admit the fact but deny its seriousness, or
* projection - admit both the fact and seriousness but deny responsibility.
http://en.wikipedia.org/wiki/Denial
Asking this OP for his Doctor's opinion, and his own explanation - but getting no response to either. This is denial. The OP admits the HIV but denies the consequences of the current state of affairs. (Stock-and-trade of the HIV denialists, by the way.)
Want to talk IRONY, instead? The thread is called "Living with HIV".
I quote myself.
OP is in denial about the consequences of HIV infection. He may have something to say in HIV Denialist forums but I haven't read there. So far in AIDSMEDS he has not in my opinion prosthelytized for a specifically HIV Denialist agenda. He has, rather, embodied denial in the psychological sense.
I don't think OP has posted here to antagonize members. I take it at face value that ETAY would like to believe and hear that he's gonna be fine from others. That ETAY can't respond to contrary information is puzzling.
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I guess I'll spell it out. He says his church is Pentecostal Holiness, aka "Holy Rollers". They believe in speaking in tongues and faith healing. He keeps track of his CD4 for the same reason some religious people handle snakes: God will keep him safe if he has faith. The worse his CD4 the greater evidence that he is not like the bad people who have HIV and need to take medications. He is an African-American male whose primary support is a conservative church that doesn't accept homosexuality. He makes it clear he doesn't want to identify with the drug addicts, promiscuous people and homosexuals. If he doesn't get sick he continues to be special and if he does get sick then part of him feels he deserves it.
Normally I would keep these opinions to myself but I am hoping Etay will read this, get pissed off and resume communication on the forum.
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I guess I'll spell it out. He says his church is Pentecostal Holiness, aka "Holy Rollers".
Lawl.
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Yes gymrat, in a nut shell, I didn't dare say it myself.
And for this reason I do not feel that he qualifies as an AIDS denialist as we normally understand that label and there is NO reason to lock his threads here.
Rather, OP's wall of denial must be torn down if he is to survive.
Best.
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Hello all, we really need to put a stop to this. This going back and forth is really RIDICULOUS.
Gymrat: I understand why you said what you did. I was raised Seventh-Day Adventist and came over into pentecostalism when I was a teenager. SDA's and Pentecostals (I hope I don't offend anybody) do tend to be ONE WAY thinkers. I am not that way AT ALL! I would often get rebuked when I was in my early twenties for questing things that didn't make sense. I am not a Jesus ONLY person. I don't even believe in divine healing. So this assumption that I'm waiting to get deathly ill for the Lord to heal me is absured! I am openly gay. I attend an openly gay christian church which worships in the pentecostal tradition. So, I am OUT. I'm out about my sexual orientation, I'm out about my HIV status, with me, what you see is what you get!
Brad: of course I go on the dissident's forums. I am not so arrogant to say that MY WAY is the only RIGHT WAY. And I am not afraid to read and possibly learn from someone with opposing views as my own. I am a left-brained thinker, so I don't respond well to fear and intimidation. (probably why I couldn't grasp the fire and brimstone messages of the traditional pentecostals). Give me the FACTS and allow me to make my own decision. I know very well the risk of having a low t-cell count, and I am MAN enough to live with my decision.
I am in close contact with my doctor of 11 years. My nurse and I speak every month or so to update her on how I'm doing and to answer any questions I might have. I go to a traditional doctor at an ID clinic here in NJ.
I see that most of you missed the point of my YouTube video. Christians (again I hope I don't offend anybody) sometimes tend to push issues under the rug and wait for God to work them out. There are alot of young people in the church who don't know who to go to. Alot of them cannot come out about their HIV status because they must deal with the shame of pre-marital sex and then they will have to admit that not only had they "sinned", but were irresponsible and didn't use protection, and now they are dealing with "GOD'S WRATH". That type of thinking is a strong-hold for many people. The purpose of the video is to bring awareness that HIV is in the CHRISTIAN CHURCH! And that people in the church SHOULD feel comfortable to deal with their issues among their own peers and associates (especially those in the church who CLAIM to love everybody).
As for why I'm not on medication for HIV. That is a personal decision that I made. I don't feel as if I have to explain myself to ANYBODY. Alot of my friends are poz and most of them are on meds. NEVER have I encouraged someone to stop their meds and be like me. I celebrate with them when they reach UD just as I celebrate with many of you on this forum when you reach UD or your t-cells go up.
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In Jesus' Name, Amen.
OK, Church is over, light em up if you got em.
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One more thing I forgot to mention. The purpose of starting this thread is pretty much clear cut. I was looking for others with "bad" numbers who weren't on meds, and didn't have any OI's at the present time. I know a couple of you, like Ann, are not on meds, but her numbers are still good. I know what type of forum this is so I wouldn't expect to find many. In no way did I post for entertainment purposes as some of you have stated. One: my maturity level is too high for that; two: I just don't have that kind of time. I was not looking for advice. What could you possibly tell me that I haven't heard before? I read many of your stories on these forums and I appreciate you guys for telling your stories and being so open and vunerable. I kind of see you guys as extended family and enjoy reading about your lives and experiences with this disease and experiences in life in general. I hope to meet most of you at the gathering later this year. I would love to see you guys face to face.
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I hope to meet most of you at the gathering later this year. I would love to see you guys face to face.
Us too, but I need to caution you that traveling with a wheelchair is a pain in the butt. Would you like me to throw my spare wheelchair in the trunk for you? I will be taking my electric, but will have room for the folding manual model.
Cheers, hope to meet and pray with you then. :)
P.S. Sorry, forgot to warn you about the Shingles. They are often the first sign of a failing immune system, but you have already had the parasitic infection, so watch out, the Shingles are on the way soon, especially if you let yourself get any stress in your life.
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I attend an openly gay christian church which worships in the pentecostal tradition...
A gay-friendly pentecostal church? Probably the most anti-gay church denomination of all? And in New Jersey? A state where some of the most vocally anti-gay christianist leaders are pentecostal, including a Democrat sen. called Ruben Diaz Sr, a pentecostal minister, who's the leading the opposition against gay marriage? I would really be very interested to find out more about this church you're attending .. I am sure it's truly exceptional.
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Etay, in the first post you mention that you are a picture of health, how can you explain this?
My CD4 counts are low as well. It is ironic that I am also feeling better and have more energy with lower t cells. I don't get sick as often as when my cd4 counts were in the 1200 range. At the same time, I'm not dealing with the stresses that I dealt with in my early 20's. I am having chest pains though and will be contacting a cardiologist early next week.
Posted December 25th, 2009 (banned organisation name) Forum
edited by Ann to remove prohibited organisation name
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Etay,
I have to admit I was tempted to lock your threads and ban your account when I became aware of your participation in a denialist forum. However, partly because my colleagues haven't been available for discussion (probably due to it being MLKD), I decided to take a "wait and see" approach and see what, if anything, you came back with in the meantime. After all, you haven't really been toting the denialist line here, other than what some of us see as your own personal denial.
You see, we have a very strict policy here concerning any posting of denialist content. It's not permitted and we do not give any lee-way on that issue. Providing you do not post any of the denialist's "party line" - and that includes in Private Messages - I don't see a lot of reason to ban you at this time, given the clarification you've written today.
We have an ex-denialist member here in these forums - for the life of me, I can't remember his username - and he nearly went the way of many of the denialists... in other words, very nearly died. He too felt absolutely fine for a long time, then suddenly one day he collapsed while eating lunch in a restaurant. He'd felt perfectly fine only that morning. He spent a long time in hospital before being deemed well enough to go home. Needless to say, he gave up on the denialist propaganda, started taking meds and was doing great, with good counts, last I knew. There aren't a lot of hard-core denialists out there who have been poz for more than a few years (and denialists have been with us for a long time) because they're all dead. Not many long-term-survivors among them at all. You also need to realise that a fair amount of denialists are not even poz.
WOULD PEOPLE PLEASE STOP POSTING THE NAME OF THE DENIALIST ORGANISATION? THANK YOU!
Ann
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I've visited that other forum and God damn did it depress me. People coming in complaining they can't breathe or swallow, but they are thanking God that they are not following the advice of their doctors because someone just gave them some sugar water and it should fix things. It's sad and Etay I think you should stay over there until you are ready for the truth... of course you may never get to see that because you follow a very disturbing belief brought on by a group that is responsible for putting many many beautiful people like yourself in the grave far too early.
Good luck my friend...
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Etay I think you should stay over there until you are ready for the truth...
I totally disagree with this statement. You want him to frequent that awful site so he can become totally brainwashed by them? Bloody Nora!
Etay, there's a saying I'm sure you're familiar with that you should be using when you even think about visiting that other site:
GET THEE BEHIND ME, SATAN!
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I totally disagree with this statement.
And you know where I was coming from when I made that statement Ann. I know you've come across a denialist once or twice in your life if not more. They will generally ride their beliefs to their grave. POZ magazine had a guy who was well respected and a gifted writer if my headache riddled memory can serve me correctly. With the materials/studies/info his own employer supplied him he died without ever popping a pill.
Denialism on the AIDS front is a terrible belief in my opinion... I hope Etay can see it before it's too late for him. I am sure the doctors and medical professionals he's seen have tried to change his mind or at the very least advise him differently as far as his approach goes, so I doubt very seriously any of us can.
So we can try, I think anyone and everyone is worthy of a shot. Sorry you took my statement so literal.
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Well ETAY, nobody has to explain their choices and rationales to anyone. But inquiring minds want to know, since you do sort of avoid the big questions - the elephants in the room -
1) What will be the situation where you will start HAART, or is there no plan to do so, ever? Is this something you have made your mind up about, specifically, for the future, or are you taking everything one day at a time? For example, I had a bf in the 80's who wouldn't take azt, but he would take drugs to treat infections. (He died.)
2) Do you expect to beat the odds and remain healthy without an immune system, according to the numbers that indicate what is an immune system. If so, what sustains that expectation? Faith? A theory?
You say that we are like family and you've been generous to the HIV+ people in your church, sharing your experience, so why not share with us here. You have surprised a few hostile members already, so do it again! Inquiring minds want to know.
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I know you've come across a denialist once or twice in your life if not more.
Known one or two? I originally became a moderator in 2002 when we had denialists trying to shut the forums down by posting thread after thread after thread of their nonsense. Yes, I know all too well what they're like. That's why I'm hoping Etay sees sense and stays the hell away from them. ::)
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Etay - and anyone else wondering if there is any merit to the denialists way of thinking - I urge you to check out this website: http://www.aidstruth.org/
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MY T-CELLS ARE HI ,AS WELL AS MY VLOAD AND MY DOCTOR WILL BE STARTING ME ON ON MEDS IN APRIL SO I THINK YOU WILL BE BETTER OFF ON THE MEDS ! BEST OF LUCK TO YOU !
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I WAS READING DR. GALLANT'S POSTS TONIGHT. IT APPEARS SOMEONE ASKED HIM A QUESTION ABOUT ETAY. HERE IS THE Q&A: I POSTED THIS ON ETAY'S OTHER POST AND PMed HIM WITH IT.
Low CD4s, No Meds & Still OK?
Joel E. Gallant, M.D., M.P.H.
Posted on Jan 16, 2010
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There's someone on one of the HIV Forums who has had HIV since 1999. His numbers were OK for many years but have been steadily declining to the point where his last labs showed CD4s at 71 and VL at 498,670 on 11/09. His last reading before that was on 7/09: CD4s 267 VL 263K He says he feels great, totally healthy and was wondering if there were others like him. Someone cited a study from 2002 that looked at some individuals with low CD4s who were "relatively healthy" b/c they had high levels of natural killer cells. I believe that the people in that study did not have such high viral loads and for all we know they could all be dead by now if they never started ARVs. My questions are: are you familiar with this scenario of people who can remain healthy with low CD4s and high viral loads? Are you familiar with this study? Were there any follow-ups to see "where are they now"? http://www.aegis.com/pubs/aidswkly/2002/AW020104.html
On Jan 17, 2010 Joel E. Gallant, M.D., M.P.H. replied:
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It is not healthy to have a low CD4 count, and it's not healthy to have a high viral load. People like this who remain untreated risk serious illness, failure to achieve immune reconstitution when they DO start therapy, and death. Those who insist on remaining off therapy because of something they read about natural killer cells should do some reading of history: We know what happened to people with low CD4 counts before there was effective treatment: they died. There's no reason to repeat this experiment in 2010!
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Oh dear, when are you guys going to learn..73 post and only 8 from the OP and in 7 of them all he had to say was "thank you for agreeing with me"..the whole thing is bullshit and you guys fell for it, and before too long you will all be arguing between yourselves and will be at each others throat while the OP sits back and has good old laugh at your expence..
Have I ever told you just how much I love and adore you?
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I WAS READING DR. GALLANT'S POSTS TONIGHT. IT APPEARS SOMEONE ASKED HIM A QUESTION ABOUT ETAY. HERE IS THE Q&A: I POSTED THIS ON ETAY'S OTHER POST AND PMed HIM WITH IT.
Low CD4s, No Meds & Still OK?
Joel E. Gallant, M.D., M.P.H.
Posted on Jan 16, 2010
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There's someone on one of the HIV Forums who has had HIV since 1999. His numbers were OK for many years but have been steadily declining to the point where his last labs showed CD4s at 71 and VL at 498,670 on 11/09. His last reading before that was on 7/09: CD4s 267 VL 263K He says he feels great, totally healthy and was wondering if there were others like him. Someone cited a study from 2002 that looked at some individuals with low CD4s who were "relatively healthy" b/c they had high levels of natural killer cells. I believe that the people in that study did not have such high viral loads and for all we know they could all be dead by now if they never started ARVs. My questions are: are you familiar with this scenario of people who can remain healthy with low CD4s and high viral loads? Are you familiar with this study? Were there any follow-ups to see "where are they now"? http://www.aegis.com/pubs/aidswkly/2002/AW020104.html
On Jan 17, 2010 Joel E. Gallant, M.D., M.P.H. replied:
--------------------------------------------------------------------------------
It is not healthy to have a low CD4 count, and it's not healthy to have a high viral load. People like this who remain untreated risk serious illness, failure to achieve immune reconstitution when they DO start therapy, and death. Those who insist on remaining off therapy because of something they read about natural killer cells should do some reading of history: We know what happened to people with low CD4 counts before there was effective treatment: they died. There's no reason to repeat this experiment in 2010!
I find that exceedingly inappropriate for someone to take someone's story from AIDSmeds.com, without the consent of Etay, and cross-post it on TheBody.com
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yeah kinda stealthy and it seems this OP has really flipped out some people.
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yeah kinda stealthy and it seems this OP has really flipped out some people.
I wouldn't say "flipped out" so much as totally amazed.
In my shower this morning, I thought about Etay, and wonder how we can keep him true to his Christian word and keep us posted as he declines in health. I know he knows how to use Youtube, but wonder if when wasting and PCP take over if he will lie and not check back in. You know mecch, Christians are above all not supposed to lie, but in this case, who knows?
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In my shower this morning, I thought about Etay, and wonder how we can keep him true to his Christian word and keep us posted as he declines in health. I know he knows how to use Youtube, but wonder if when wasting and PCP take over if he will lie and not check back in. You know mecch, Christians are above all not supposed to lie, but in this case, who knows?
1)since when is it our place to keep him true to anything ?
2)since his God has a forgiving nature, should he (and in the last place we!) worry about forgiveness ?
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2)since his God has a forgiving nature, should he (and in the last place we!) worry about forgiveness ?
Given that his God has just flattened Haiti twice in as many weeks, I challenge your assertion about the Almighty's "forgiving nature".
MtD
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"his God" ! .......personally I don't subscribe to the existence of such identity ;)
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Then how do you attribute a nature (forgiving or otherwise) to an entity you claim doesn't exist?
;)
MtD
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I find that exceedingly inappropriate for someone to take someone's story from AIDSmeds.com, without the consent of Etay, and cross-post it on TheBody.com
twasn't me!!
As much as I find both of these threads to be annoying and full of bad info [that newly diagnosed people might believe to be appicable to their case] I agree on the fact that it is anappropriate. This is is sorta like taking family secrets to the neighbours and asking them for advice.
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Moffie, you were thinking of me in the shower? That makes me feel warm and fuzzy!!! ;D ;D ;D
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The Lord can see you in the shower too, Etay. ;)
MtD
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Etay,
Loads of people flash through my mind whilst showering, and I send a prayer for each one. Some have passed over though and they need less prayer, since they aren't dealing with the infirmities of a physical body anymore. One day I even got a slap up side the head from a recently passed neighbor, because I was being tempted to not give a shit about my brothers and sisters who are living with HIV. He gave me a good slap, and told me if I didn't do it, who would? I relented and wrote a letter to our representive in HRSA in Washington DC, and chewed her a good one.
I sure do think of many while cleansing this HIV riddled body. ;)
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Moffie, you were thinking of me in the shower? That makes me feel warm and fuzzy!!! ;D ;D ;D
ETAY - inquiring minds want to know. Why don't you share with us your rationale for not taking HAART. Yeah, you don't have to explain, but here we all, expressing amazement, frustration, anger, concern. Assuming we are all able to carry on a civil conversation, why do you avoid the elephant in the room question?
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Mecch, it's my own personal desicion. The thought of medication for the rest of my life? Not ready for that yet.
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Mecch, it's my own personal desicion. The thought of medication for the rest of my life? Not ready for that yet.
I remember saying this very same thing for years after my diagnosis and prior to being hospitalized with PCP.
When and if you do decide to go on meds, it really isn't much different than having to remember to take your multivitamin and garlic. As I'm sure you found out with your supplements, the benefits greatly outweigh the detriments.
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The thought of medication for the rest of my life? Not ready for that yet.
Etay,
The rest of your life will be very short without them. Just curious though, do you have an adversion to the meds per say or are you simply afriad of the side effects people talk about?
"Every man's got a right to decide his own destiny and in this judgement there's no partiality"
I hope your decisions are capable of being rectified... Good luck Mr. Etay.
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So this Etay guy seems to enjoy romping around on AIDS denialist web forums so I must wonder if this has been discussed in this thread and if he defines himself as one, and if he is one why is he bothering everyone here?
Frankly since I don't know the guy I could care less if he sinks down to 3 t-cells and still decides that popping a few pills every day is just so tortuous that he can't handle living that way.
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So this Etay guy seems to enjoy romping around on AIDS denialist web forums so I must wonder if this has been discussed in this thread and if he defines himself as one, and if he is one why is he bothering everyone here?
we've discussed it some, but Etay is pretty sparse with his comments around here. Unfortunately, that's made it hard for us to figure out exactly what kind of person he is, and what we should say to him (man up and take the meds or go the fuck away and take your denialist shit elsewhere), so we have all said a little bit of everything to him. Personally, it's no skin off my nose to keep writing stuff here, especially if it might save someone's life. I know I may be beating my head against a brick wall; but who knows? It would be nice to think something someone wrote here finally made him see the light and kept him from dying. My suggestion is if people no longer feel like continuing to try to help Etay realize how necessary the meds are, there are plenty of other threads around here to keep you occupied. As I've just volunteered to work with the Speaker's Bureau of my ASO, I don't see that persuading Etay to take meds is much different that trying to persuade people to have safe sex, or to get tested to save their lives.
The thought of medication for the rest of my life? Not ready for that yet.
would you feel the same way if you had diabetes? would you refuse to take insulin even when you're blood sugar numbers showed that you needed it? how about if you need high blood pressure medicine? Do you take vitamins or supplements daily? Do you refuse to take other medicines or just HIV meds?
I believe God gave men the brains to invent medicines to keep us alive and healthier longer. To not take advantage of the meds is to deny that God wants us to use those brains to improve our lives. And if you're not very religious (and I watched your vid clips, so I don't think that explains you at all), we could take God out of this equation, and in that case it's just plain stupid to not take meds that would keep you alive.
Besides no one is ever really "ready" to take meds all of their lives. (what does that mean anyway??) Do you really think that any of us want to have to adhere to taking meds every day? No diabetic does, no one with high blood pressure does, no one that has to take daily meds to stay alive really wants to be saddled with taking pills every day. But it's a sight better to take meds daily and live, than to not take meds and not have a life to live.
Plus, don't forget, that everyday you continue to not try to stop the HIV, it is replicating inside of you and damaging your immune system and your internal organs. Every day that passes, you are losing quality of life in your remaining years that the meds could be giving you. If you wait much longer, you will be guarenteeing yourself numerous other problems because of the great amount of internal damage the HIV will have done for which time and other meds will not be able to compensate. Many of us who didn't find out our status until nearly too late suffer from many issues that can never be "fixed" because of how long the HIV went unchecked in our bodies.
I'd love to actually have you be part of this discussion someday Etay with something more than your cryptic one-liners that don't really help us to understand where you're coming from. Unless of course, we've already shot down all your arguments. LOL
I realize that you didn't exactly start this thread to have this kind of discussion; but only a truly egotisical self-centered person would ignore what the other people in the room were saying and keep trying to force a discussion to only be about what he wanted to talk about.
As you should have surmised by now, there really aren't any people around here with low tcells, high viral load, not on meds, and asymptomatic. Those people tend to either not know they have HIV (until they get hit with an OI and find out) or they have already died. A few people were at one time in a position similar to yours, but they testified that they ended up very sick and barely went onto meds in time to save their lives. To be honest, if you're not actually a "denialist" then you're a very rare person who believes in the science enough to bother with the blood tests and generally accept your doctor's opinions and yet is arrogant (some might even say stupid) enough to think he knows more than the science and the doctors and thinks it's "wise" to deny taking the medication that could keep you from becoming terribly ill or perhaps dying.
Whatever kind of guy you are Etay, your unbelievable attitude/opinion has certianly helped you make an impression around here. Hope to hear MORE from you!
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So this Etay guy seems to enjoy romping around on AIDS denialist web forums so I must wonder if this has been discussed in this thread and if he defines himself as one, and if he is one why is he bothering everyone here?
Frankly since I don't know the guy I could care less if he sinks down to 3 t-cells and still decides that popping a few pills every day is just so tortuous that he can't handle living that way.
His response was one of his typical dismissive one-liners. Something to the effect of having the right to visit denialist boards so that he can get all sides of the story.
My opinion, and I'm sorry to sound judgemental, if someone is a member of a denialist forum and posts actively in such dreadful, ignorant places then they have more than a tinge of denialism to their way of thinking. If we were a board focused on Jewish heritage and we found some member posting questionable rubbish, and then we discovered that they also belonged to a neo-Nazi forum would we tolerate it?
I simply refuse to buy into this. Even if/though the guy is actually likeable.
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The thought of medication for the rest of my life? Not ready for that yet.
Etay,
I can understand that also. After having seen so many lives lost in the early days, on AZT mono therapy, I think that was one of the determining factors in myself holding off. Plus my own cockyness and self denial.
BUT !!, Times have changed, and the whole purpose of starting on medication, is to prevent yourself from being admitted to the hospital in the first place.
Pneumonia is not fun, extreme fatigue is no fun, opportunistic infections are not fun, and some you may never recover from.
And, If you get esophageal thrush ( candida, all the way down your throat,) you'de be wishing you had started sooner.
Everything you eat, drink and swallow, will be like chewing on broken glass, and the excruciating pain, will go all the way down to your stomach. It will feel as though you having a severe heart attack.
When it hurts to wash your hair in the shower, because you have no strength to hold your arms above you, you will have wished you were on medication. When simple things like walking a flight of stairs, almost make you pass out, you will have wished you started sooner
I've Been there, done that. And I regret to this day having held off on medication as long as I did !
Ray
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Hey Mikie and Ray,
Those were great posts, I don't see it getting anymore religious (holy, Jesus -like, christian or whatever)than people caring for each other. I was left feeling very uncomfortable with some of the more aggressive posts in this thread, as I empathize with the frustration of some members in the face of such absurdity (as for etay refusing to take meds). Different strokes for different folks and I apologize to etay for any comments I made that were judgemental. I think it best to try and engage rather than attack a differing opinion (even one that flies in the face of science and medicine). By doing this we reduce the risk of a newbie seeing these attacks as jealous AIDS victims whose motive is misery loves company, take the meds. Any opinions urging the start of meds expressed here a are no different than urging safe sex and testing.
As I've just volunteered to work with the Speaker's Bureau of my ASO, I don't see that persuading Etay to take meds is much different that trying to persuade people to have safe sex, or to get tested to save their lives.
Just my two cents.
Richard
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LOL, I think Etay might be a provocateur, like that woman who claimed she gave HIV to 500 people because she was bitter that a cure had not yet been found. It turns out she's negative and wanted to raise awareness. Which she did, apparently many more people than usual went in to get tested in Detroit, where she is from.
LINK:
http://www.latimes.com/news/nationworld/nation/wire/sns-ap-us-hiv-hoax,0,418979.story
(this thread is getting more and more macabre, I don't know whether to laugh or cry)
I agree. That and/or has a psychiatric issue going on (not saying this to cause offense) such Münchausen syndrome.
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If we were a board focused on Jewish heritage and we found some member posting questionable rubbish, and then we discovered that they also belonged to a neo-Nazi forum would we tolerate it?
(http://www.forumammo.com/cpg/albums/Upload/Upload/ban-him.JPG)
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Mecch, it's my own personal decision. The thought of medication for the rest of my life? Not ready for that yet.
Ok, WOW THANKS - I am SO glad you have spelled it out for us. Of course decisions about your body are your own to make. But what exactly is it? The commitment to some kind of artificial "health" for the rest of your life - health that depends on medicine? The cost of the medicine? Something about the politics of medicine? Something about medicine doesn't jive with your spiritual beliefs? Fear of side effects?
I can tell you one thing. I just turned positive recently, and went on HAART very quickly. The specialist assures me, the HAART you take now these days 2010 - it is NOT poison, not TOXIC. And there is not garantee you have any side-effects, and if you have them, they can be quite mild.
So what people have been so concerned about is whether you understand that you may feel fine, at the moment, you've had HIV for a long time now, and recently it has gotten quite worse. There are real effects on your body and possibly mind, as well, from such inflammation and high viral loads.
You know, you have had a really long run without meds. Your body put up a great fight. And obviously you have keep a very positive attitude and interest in normal living! All that is great. I'm sure its the reason you feel "fine".
If you started HAART now, you might very well go on feeling just normal and fine. Wouldn't that be the best solution? Cause the alternative is some really catastrophic illness. Its not fear mongering when we say that. Many have had such scrapes with death and many others have seen it in their loved ones, now dead.
Don't you feel some responsibility to continue on your good works and being a healthy, dynamic person in your job, your church, your family and your friends. Imagine the suffering you will put them through if you have a horrible illness and are suffering yourself.
Best - mecch.
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Everyone posting in this thread should scroll back and re-read what the wise woman, Jan (anniebc) had to say. Then read it again and stop feeding this guy the attention that he craves.
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Everyone posting in this thread should scroll back and re-read what the wise woman, Jan (anniebc) had to say. Then read it again and stop feeding this guy the attention that he craves.
How bout a shameless BUMP. ;D
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Etay,
I understand the choice to avoid going on meds as long as possible and it sounds to me like you are aware of the risks such a decision involves. If you did not before, you surely do now after getting all of these responses.
I avoided meds as long as I could, until I was at a point where I was very ill, with a CD4 count of 1, a viral load of 3.3 million and kaposi's sarcoma all over my body, face and internal organs. That was in 1995, just prior to the introduction of protease therapy.
I was originally diagnosed in 1985 and a review of my medical records indicates I was probably infected in 1979. Anyone who chooses to wait until their immune system is as compromised as mine was does so at great peril. Yet I do not regret waiting.
There are still people who wait for years before starting therapy, usually contrary to their physicians' advice (although they are probably less likely to be on this message board, since it is principally focused on AIDS meds). Some of them have a genetic mutation association with much slower progression of the virus (I am one of those). Others decide not to treat because they feel good, as you do. Some are surely in denial of the severity of their situation.
While I have always urged people to avoid letting a lab report tell them they are sick, closely monitoring your labs is even more important when your CD4 count is falling and you're not on treatment.
I believe I am alive today because I refused pharmaceutical treatment when it was first prescribed for me and, just as important, that I went on pharmaceutical treatment when I did. Waiting longer not only risks various OIs, but it also makes it tougher for your immune system to rebound and, in fact, it may never come back as much as someone who started meds earlier. That's a trade-off for avoiding whatever cumulative toxicities you might get from starting treatment earlier.
Another reason to consider treatment is because it will make you less infectious.
Reading through these posts, it does seem to me that some of them are harsh and imply criticism of anyone who does not go on treatment. I don't think there is one treatment strategy appropriate for every person, but too often the debate boils down to whether someone should be on treatment solely based on their CD4 and viral load. For most people I know, it is a more complex equasion.
Please keep a close eye on your labs. You are, statistically, at great risk of developing an OI and, as one poster noted, that can happen relatively quickly, within a few months. It is likely, but not 100% certain, that you will respond well to treatment when you start and your CD4s will rise quickly and your viral load will go to undetectable.
Sean Strub
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Yet I do not regret waiting.
Really? You could have at least waited for "0" t-cells, no? Just for giggles and all. I mean come on, you almost died from what you did, and yet you say you have no regrets. Sorry, but that just boggles the mind, and yes I lived through that whole era myself so I know what was going on. There was a difference between going on AZT at those mega-high doses in 1987 and the lower doses (like I did) in 1993. You're "alive today" for one reason -- mostly called luck. We all know plenty of people that did what you did and ended up taking a dirt nap.
Comparing what you did in waiting for PI's and HAART regimen to appear (which could have easily backfired on your) with what the OP/Etay is doing with current treatments which are not even comparable to what was available to you in the early 90's is disingenuous at best.
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Miss P,
From someone who has been there also, I fully agree.
Etay,
God has blessed you with good health up til now. BUT, remember this, "whom the gods reward, they will destroy, if they presume to be a god." (HUBRIS).
This is my last post in this thread.
v
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What's wrong with not regretting? I waited to go on meds as well, and I don't regret it. What good would it do anyway to "regret" something you can't go back and change? If I hadn't recovered from incidents in 2001/2002 , than yes, there may be room for regret. However, for me (and obviously others), that's not the case.
I made a decision, I suffered the consequences, and I moved on by making smarter choices. There's no time for regret.
We've all made stupid choices in our lifetime despite the "facts" we were aware of, or we wouldn't be posting in "Living With HIV". We all come here looking for advice or support of some type, and the moment someone disagrees with us we want to ban them, call them stupid, etc. Defeats the whole purpose of the forum, don't you think?
I think one thing we can all learn from each other is that living with HIV (or any terminal illness) is not a one size fits all. While I don't agree with op's decisions, it's not my place to press my views upon him. All any of us can do is relay the facts and share our experiences and hope he makes an informed and intelligent decision for himself regarding his health.
If etay is a denialist, he has yet to press those views upon us. Therefore, I don't see any reason to ban him. would I have been considered a denialist and banned if I had been visiting this website 1991 - 2002 and stated I refused to take meds? Chances are if I was around here during that time, it's quite possible similar comments and experiences you all have shared with etay may have persuaded me to rethink my position. I think we owe etay the benefit of the doubt until such time he clearly shows what many of you fear.
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Lack of regret indicates that you'd do the same thing again, knowing all what you know now. Is that the case with you, Dennis? Sean? I'm not saying you'd have decided to go on meds as early as lots of others, as there is (obviously) a wise choice in hindsight of not going on AZT when it was first available at mega-high doses, but less so once doses were lowered.
There are informed decisions, and decisions borne out of an acute sense of denial. Knowing Strub's background as I do I doubt it was denial.
But hey, feel free to be defensive.
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I think this thread is very interesting and informative. Why do people have to be so negative. Isn't it clear that we've decided to give ETAY the benefit of our patient exploration of his denial of the consequences of untreated HIV, or, perhaps, our probing of the mysterious reason that he won't fully explain his rationales - maybe its not denial.
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Mecch, I for one have always been a supporter of anyone who chooses not to take the lifesaving medications, just as Ryan White did, but this decision must be made without any undue influence on the person. In this case though, I am sure that Pentecostal Theology and other BS has had an undue influence on Etay. Can't proove that, but I draw on my own Christain Evangelical background to influence this particular post, and those I have given to this thread.
I just don't buy that Etay is dealing with a full deck of information here, yet I thank Sean for coming in and giving witness to what many of us did in the mid nineties. Times and meds are now very different.
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Mecch, I for one have always been a supporter of anyone who chooses not to take the lifesaving medications, just as Ryan White did, but this decision must be made without any undue influence on the person. In this case though, I am sure that Pentecostal Theology and other BS has had an undue influence on Etay. Can't proove that, but I draw on my own Christain Evangelical background to influence this particular post, and those I have given to this thread.
This all may be true, but we can only gently prod ETAY to come out with it. Wishing him an early grave as some almost seem to have done, or calling him a HIV Denialist when he has clearly stated he would never discourage a friend from taking HAART. Also, someone said he was so actif in denialist forums and I saw but two posts there.
If anyone doesn't have the will or interest to continue the deprogramming and reprogramming, just go away. Stay if you want to continue telling true stories about untreated HIV, and exchanging real information.
I dont see how his posts in AIDSMEDS will fuel misinformation among others dropping by these forums, if we continue to post the truth in these threads.
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Mecch, I for one have always been a supporter of anyone who chooses not to take the lifesaving medications, just as Ryan White did, but this decision must be made without any undue influence on the person. In this case though, I am sure that Pentecostal Theology and other BS has had an undue influence on Etay. Can't proove that, but I draw on my own Christain Evangelical background to influence this particular post, and those I have given to this thread.
I just don't buy that Etay is dealing with a full deck of information here, yet I thank Sean for coming in and giving witness to what many of us did in the mid nineties. Times and meds are now very different.
Agreed, it's the difference between an informed and an uninformed decision. Though I'll add that I often find some "informed" decisions slightly uninformed, but at least an attempt is made.
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I believe I am alive today because I refused pharmaceutical treatment when it was first prescribed for me and, just as important, that I went on pharmaceutical treatment when I did.
Sean Strub
I also believe the same. I've been told that, by at least a half dozen professionals throughout these past 24 years, Even as recently as 4 months ago. Each time , It made me raise an eyebrow.
It was after a 1999 blood test,( almost 14 years after being diagnosed) when t-cells were in the mid 900 range, that I got cocky, and slipped into that denial. I never thought that I would get sick, but when I did, my body fell apart quite fast. Within a period of 4 years t-cells went from the mid-900's to 16.
Ray
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Wow this thread has become allot more civilized,thank you. There was so much hostility and ugliness at first I was afraid to post but now I feel safe enough to tell my story some.
So I was on AZT mano therapy till I couldn't do it anymore. Then came protease and I was on that cocktail for around 7 to 10 years. I would take breaks for a month or two once in awhile but was manly very consistent with a t-cell count of 350ish and undetectable throughout. I never questioned anything my doctor told me about my body until 5 years ago. Then 5 yrs ago I see this guy on TV saying how organic vinegar is a better treatment for so called acid reflux disease than anything from the pharmaceutical companies, Well I had been having horrific tummy trouble for years,constantly popping Rolaids and zantec and still being bloated and in pain with weak digestion ect...Well eventually I tried the vinegar and as soon as it hit my stomach by whole body seemed to say "ah thank you" and before long I did not even need to take the vinigar anymore. I was happy about the cure but felt horribly betrayed by my country and the medical system. Why the hell didn't any of my doctors tell me about this cure? Anyway it was an eye opening event. Being a rather extreme person by nature I went from a pill popping city slicker to a tree hugging hippie in short order :)
Anyway I decide that since I can't seem to trust the medical industry with my upset tummy I can't necessarily trust them with my immune system either so I look up other views about my body...
Long story short I adopted many of the dissenting views about HIV/Aids and decide to stop the drugs and the monitoring until if and when my health declined in an AIDS like manor. For five years I have enjoyed healing in my body. My horrible chronic fatigue went away my sleep issues went away I lost 65 pounds of body fat while gaining muscle, my anemia went away,my liver function returned to normal in short I changed my life.
A great success story right up till I developed MAC. It is so hard to believe many of the dissenting party lines when you have a positive test 4 t-cells and your dying of a lung infection at 43 years old without any lifestyle issues to blame it on. The MAC was hideous months of cough,fevor, night sweats being to weak to work, I lost over 20 pounds on an already lean frame with low white counts,anemic,low platelets ect ect.. .
I count myself very fortunate to have recovered from the MAC with my docs help and some good karma. I have gained 27 pounds in five weeks and feel better than I have in years I am still holding back on the ARV's at the moment because I want to see how my next labs look while I am not sick. Also I have had rather extreme chronic allergies since moving to Hawaii but I have found out it wasn't the volcanic fog or the mold but all the pot I have been smoking lol My breathing issues got so much better when I stopped and now that I'm not sick anymore and feel so freaking great I realize I am allergic to pot and can't smoke the stuff at all much less 5 times a day like I had been he he. So I definitely don't advise anyone to do as I do and I have been very humbled by my illness but my path is my path and I need to be very sure my life depends on toxic drugs before I will take them again.
I get my next labs middle of next month and if I don't see some major positive changes I am likely to start ARV's again
I hope my story can be helpful
Tracy
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Well that is a great history and if it shows one thing is that living with HIV is living with contradictions that cannot be resolved.
It also shows, once again, like other stories in this thread and thousands on this site and millions in the world, that you can feel "healthy" while sliding toward death.
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::shakes head::
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Yeah Fondoo, wait until you get the next bloods, or you start getting feverish, or you start dropping weight, or you can't breathe, or, or.......
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My suggestion is if people no longer feel like continuing to try to help Etay realize how necessary the meds are, there are plenty of other threads around here to keep you occupied.
I won't even bother to repeat that if this thread bothers anyone that they are free to go to a different thread, since I'd just be banging my head against the wall trying to make people not post in threads they couldn't stay away from. LOL (how's that for a passive-aggressive post? ROFL)
Mecch, I for one have always been a supporter of anyone who chooses not to take the lifesaving medications, just as Ryan White did, but this decision must be made without any undue influence on the person.
Ah, I would have agreed with you Moffie, but only "back in the day". I myself went off meds several times as a "quality of life" decision, not quantity of life. However, this is 2010, and anyone that doesn't at least try meds, from the vast of array of improved meds, when their numbers have gone below the medically set limits is just stupid and doesn't deserve any PC rationalization. They deserve to be given all the necesary facts and then if that doesn't work, they need to be told about their stupidness and stubbornness until they cave into following the medical guidelines or leavie the group/forum - since this is a group based on supporting the medical and scientific facts about HIV/AIDS not denialism.
Personally, it's no skin off my nose to keep writing stuff here, especially if it might save someone's life. ...It would be nice to think something someone wrote here finally made him see the light and kept him from dying....As I've just volunteered to work with the Speaker's Bureau of my ASO, I don't see that persuading Etay to take meds is much different that trying to persuade people to have safe sex, or to get tested to save their lives.
Yikes, I'm quoting myself again; but I'll point out again that I think this thread may not be the worst thing in the forums after all. Look at all the reasons and arguments that we've laid out for a newbie to read about why to go onto meds. Isn't that invaluable data?
Things that I have read and written in this thread have already helped me to refine the answers I can give to people in the Q&A section that follows the speech I give after my ASO's HIV prevention/detection presentation.
and consider the possible outcomes of this thread:
1) Etay changes his mind after reading something here and gets on the meds, then we've helped saved a very stubborn person from sure death.
2) Our predictions come true. Etay ends up in the hospital with an OI - and hopefully survives. Not only might he need our suppport for real but he might even have valid questions to ask of the forums after he gets out of the hospital. The forums have already let back in people who have said much worse things than Etay's limited comments, so I can easily envision the scenario when Etay (who has been a member since Oct 09) makes a small apology (Doh!) for being so pig-headed and then the members here gladly offering their help.
3) Our warnings go unheeded and Etay continues down this path to his ultimate doom - well, then we have a perfect, but incredibly sad, object lesson to point out to a newbie debating staying off meds. Just as I use my Jim's story (undiagnosed, untreated HIV will kill you!) and have the "Spinning Wheel" thread to point to, so will Etay's story ("Low t-cell and healthy" thread) of not taking meds and dying be a tale we could point out, rather than just mentioning friends who followed this same route and died in the past when we talk to the next idiot that shuns meds.
Of course, we still might get played for a while (yes, Etay. I see you keep poking your head into the forum and yet making no reply. You were here last night, back this morning, and back again tonite. ;) ); but I'm just sitting here with nothing else to do but think of some other tactic to try the next time Etay drops in with another cryptic non-reponse in this dicussion that he started.
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I count myself very fortunate to have recovered from the MAC with my docs help and some good karma.
So I definitely don't advise anyone to do as I do and I have been very humbled by my illness but my path is my path and I need to be very sure my life depends on toxic drugs before I will take them again.
I get my next labs middle of next month and if I don't see some major positive changes I am likely to start ARV's again
I hope my story can be helpful
Tracy
Are you joking Tracey? That your story can be helpful? If you're not advising people to do what you did, then how is your story supposed to be of any help? You're worst than Etay. You've actually survived MAC and say you're "likely to start" meds again. Down to 4 tcells, got MAC, and still won't take daily meds? Way worse than Etay. If having MAC didn't change your opinion about being on meds then I don't understand why you think your denialist attitude would be helpful at all in this thread. And by the way, you didn't recover from MAC with your "docs help and some good karma", it took medicines to make you recover. It had nothing to do with "help" or "karma". Perhaps you need to re-read this thread and think about what we have been trying to say to Etay and learn the lesson we're trying to impart to him.
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I've visited that other forum and God damn did it depress me. People coming in complaining they can't breathe or swallow, but they are thanking God that they are not following the advice of their doctors because someone just gave them some sugar water and it should fix things. It's sad and Etay I think you should stay over there until you are ready for the truth... of course you may never get to see that because you follow a very disturbing belief brought on by a group that is responsible for putting many many beautiful people like yourself in the grave far too early.
Good luck my friend...
Skeebo,
I just wanted to tell you that I agree with you.
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Fondoo, you state in another forum that you tried twice to treat your MAC with antibiotics the docs gave you without the knowledge of your hiv infection. You admit yourself that you did not recover until you admitted to being hiv positive and stronger meds were given. Good karma my ass. It's only a matter of time before MAC comes back or another OI rears its head.
You also say on that other forum that you're thinking of starting meds again. And some of the more hard-line members there will tell you to stop feeling sorry for yourself and to not take meds. Will they visit you in hospital or attend your funeral? Doubtful. The fact that you're on the fence about meds is the only reason your ilk is being permitted here. I'm hoping you see sense.
Ann
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"ilk" is such an operative word
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My Ilk? Please delete my post if you desire Ann. I came here to get and give support not to be a target for hate. I am a honest good natured person doing the best I can. I would like to make some real friends so I share my real story. If I wanted phoney friends I would give you all a phony story so exept me as I am or ban me right now I am too hurt to care.
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"ilk" is such an operative word
I guess that's why it sprang to mind first. It wasn't about hate, it was just calling a spade a spade.
Fondoo, you won't get the vitriol over here that you get in that other place when you say that you're thinking about taking meds. I've seen how nasty they treat people who chose to go on treatment. You won't get that here. Do you realise that some of those guys over there who are so adamantly against hiv meds aren't even hiv positive? They don't give a shit about you. We, on the other hand, do care about people with hiv.
I look at it this way - if we can save either of these guys from the delusions of the denialists, then I'm reluctant to throw them to the wolves. They're welcome here to a point and the moment the cross the line they'll be banned. I just hope it doesn't come to that - I hope these guys realise that the meds do help keep one alive and healthy.
Ann
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Wow this thread has become allot more civilized,thank you. There was so much hostility and ugliness at first I was afraid to post but now I feel safe enough to tell my story some.
So I was on AZT mano therapy till I couldn't do it anymore. Then came protease and I was on that cocktail for around 7 to 10 years. I would take breaks for a month or two once in awhile but was manly very consistent with a t-cell count of 350ish and undetectable throughout. I never questioned anything my doctor told me about my body until 5 years ago. Then 5 yrs ago I see this guy on TV saying how organic vinegar is a better treatment for so called acid reflux disease than anything from the pharmaceutical companies, Well I had been having horrific tummy trouble for years,constantly popping Rolaids and zantec and still being bloated and in pain with weak digestion ect...Well eventually I tried the vinegar and as soon as it hit my stomach by whole body seemed to say "ah thank you" and before long I did not even need to take the vinigar anymore. I was happy about the cure but felt horribly betrayed by my country and the medical system. Why the hell didn't any of my doctors tell me about this cure? Anyway it was an eye opening event. Being a rather extreme person by nature I went from a pill popping city slicker to a tree hugging hippie in short order :)
Anyway I decide that since I can't seem to trust the medical industry with my upset tummy I can't necessarily trust them with my immune system either so I look up other views about my body...
Long story short I adopted many of the dissenting views about HIV/Aids and decide to stop the drugs and the monitoring until if and when my health declined in an AIDS like manor. For five years I have enjoyed healing in my body. My horrible chronic fatigue went away my sleep issues went away I lost 65 pounds of body fat while gaining muscle, my anemia went away,my liver function returned to normal in short I changed my life.
A great success story right up till I developed MAC. It is so hard to believe many of the dissenting party lines when you have a positive test 4 t-cells and your dying of a lung infection at 43 years old without any lifestyle issues to blame it on. The MAC was hideous months of cough,fevor, night sweats being to weak to work, I lost over 20 pounds on an already lean frame with low white counts,anemic,low platelets ect ect.. .
I count myself very fortunate to have recovered from the MAC with my docs help and some good karma. I have gained 27 pounds in five weeks and feel better than I have in years I am still holding back on the ARV's at the moment because I want to see how my next labs look while I am not sick. Also I have had rather extreme chronic allergies since moving to Hawaii but I have found out it wasn't the volcanic fog or the mold but all the pot I have been smoking lol My breathing issues got so much better when I stopped and now that I'm not sick anymore and feel so freaking great I realize I am allergic to pot and can't smoke the stuff at all much less 5 times a day like I had been he he. So I definitely don't advise anyone to do as I do and I have been very humbled by my illness but my path is my path and I need to be very sure my life depends on toxic drugs before I will take them again.
I get my next labs middle of next month and if I don't see some major positive changes I am likely to start ARV's again
I hope my story can be helpful
Tracy
Your story serves to illustrate how the illusion of health can so quickly be ripped away from a person. I guess you again have a choice to take or not taking the HIV meds and accept the resulting consequences. I wish you luck and good health.
By the way, are you aware that smoked pot can contain fungal spores and chemicals that can be fatal to somebody with a compromised immune system? Source: here (http://www.mjlegal.org/health.html)
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I came here to get and give support not to be a target for hate. I am a honest good natured person doing the best I can.
I hope that you didn't take my post to be hateful, incredulous perhaps but not hateful. I just had to point out the problems with using your story (not on meds, deadly sick, barely recovered and yet still not on meds) made it totally unhelpful in this thread as we were trying to explain/persuade Etay to understand the importance of meds - especially when you are claiming to still not fully understand the importance of taking meds yourself. If you really do want support, I would suggest you move your story into your own thread where your issues can be addressed without interference from the discussion going on about Etay and the topic he brought up (that's just good net etiquette anyway). Similar to what I said to Etay, I would hope that you would understand that what you perceived to be vitriol/anger/hatefulness is actually a very serious concern about you, your health, and your obvious lack of information concerning the needs for meds to fight HIV. The spectre of Death that hovers over yours and Etay's refusal to take meds brings out a certain amount of emotion and vehemence in our response to try to help the both of you.
Although to continue hijacking Etay's thread just a minute more, I do disagree with a comment you just made. I, and most here, would disagree with your assessment that you are "doing the best you can" - especially if you have already suffered through a major OI and still refuse to acknowledge the need for HIV meds to improve your health. If you'd like more information so you can truly do the best for youself, please don't hesitate to put your story and issues into your own thread, so that members here can better advise you.
best wishes, and please reconsider your decision as the world would become an even smaller place if you were to become just another AIDS death statistic.
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isn't it strange that ALOT of people who agree or how are sympathetic to his story have only posted a few times. I smell some kind of sabotage here.
I respected ETAY until he posted that stupid fucking video on youtube about how "fine' he feels with such lose counts. Do you know how many young people could watch that and say "I feel fine" so I don't need to test or go on meds.
I agree with Miss P- BAN THIS LIAR
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This is my last time posting in this thread.... Just wanted to make everyone aware.
BUMP
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isn't it strange that ALOT of people who agree or how are sympathetic to his story have only posted a few times. I smell some kind of sabotage here.
This gave me the biggest laugh I've had all all week! Sabotage? What or who are we trying to sabotage?
First of all, I don't think I've read one post in this thread that "agrees" with etay. Second, it's not a matter of being sympathetic. I just think some choose to not to read each and every single post as a cynic. Third, what do you think etay is lying about, and how can you be so sure.
I respected ETAY until he posted that stupid fucking video on youtube...
Really? And you just happened to show this respect by calling etay a denialist troll and and projecting a death wish upon him in your first reply to him?
It must get pretty lonely on the pedestal some of you look down from.
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Dennis
When did I wish death upon him? prove that claim?
I think he is a total denialist and there are a few peeps who have like 7 post who agree or are sensitive to his nonsense.
and his youtube post is irresponsible and if you don't see that then so be it.
Pete
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This gave me the biggest laugh I've had all all week! Sabotage? What or who are we trying to sabotage?
I think Pete was referring to the people with like 5 posts who were supporting Etay's belief that everything will be OK if he continues on this path set forth by the preacherman... or woman I guess. Perhaps not sabotaging, but I can see how one might think they are here to perpetuate his beliefs.
Dennis, keep in mind Etay even explained in his video that he was over joyed when he received his AIDS diagnosis. He may not be overtly saying it, but his message sure has some denialist overtones to em. Etay's responses to only the people who support his actions/beliefs also is cause for suspicion.
Do I think Etay is a denialist? Maybe not who knows, but I do gather he is at best someone who has been advised by people who do not follow the facts.
Damn sorry Pete you responded while I was proof reading my junk
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thanks Skeeboo
That is exactly what I was saying maybe not sabotage but I thought that it was a say for denialist to come into your little world here
And Dennis if that is the biggest laugh you got all week, maybe you should leave the house more.
I will say it again ETAY is full of shit and should be banned.
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thanks Skeeboo
That is exactly what I was saying maybe not sabotage but I thought that it was a say for denialist to come into your little world here
And Dennis if that is the biggest laugh you got all week, maybe you should leave the house more.
I will say it again ETAY is full of shit and should be banned.
If you're talking about Fondoo, than I agree. That's the only member I recall who somewhat agrees and has less than 10 postings.
I don't agree with Etay. However, I don't consider him or anyone who documents their own personal experiences as irresponsible. However, I would consider someone to be irresponsible if they made a personal medical decision based soley on a video on YouTube.
Trust me, 16 college credits and work gets me out of the house plenty.
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Dennis
Have you read the "AM I INFECTED" forum? It is full of folks with half as knowledge of HIV. I think if someone search Christian and HIV on youtube and came across him it would be so irresponsible and I pray those people come here for the correct info.
I don't want to fight with you but come on, his message is irresponsible and childish.
Pete
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I just read this whole thread and it seems to me the originator is more "denialist" than he wants anyone to believe. Something ain't kosher. Hopefully some of the well-informed and heartfelt responses in this thread will help others who actually want to face the hard facts, not live in denial.
Mikey
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Have I ever told you just how much I love and adore you?
No not recently...what's up? am I not paying you enough, I thought the money we agreed on was for at least one "I love you" a month... ;)
Hugs
Jan :-*
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this thread just went back on track to be a trainwreck.
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this thread just went back on track to be a trainwreck.
Wouldn't that be off track?
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I'm new to the forums and hope not to offend anyone, but each time I go to my unread threads and see that this one is still going, and going, and going..... (like that battery bunny), I'm wondering just how long is it going to be allowed to keep going on...... not only has the dead horse been beaten, but I don't even think it would be recognized as a horse any more. Just my thoughts. Although, I have appreciated reading much of the discussion -- particularly early on in the thread -- then it just became overly redundant.
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I'm new to the forums and hope not to offend anyone, Although, I have appreciated reading much of the discussion -- particularly early on in the thread -- then it just became overly redundant.
Welcome to the fourms, and if you think this thread is redundant, stick around for three or four years; you aint seen nothing yet. ;)
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It was off the track, almost frozen. Then back on the track, but its heading for a trainwreck. Full speed.
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I would suggest you move your story into your own thread where your issues can be addressed without interference from the discussion going on about Etay and the topic he brought up (that's just good net etiquette anyway).
I see your point sorry for the hijack.It has been some time since I was around such a busy active forum. I will see if I can gather the guts to move and discuss my story further. I want support but I am extremely sensitive to other peoples anger right now.