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Author Topic: Low t-cell and healthy?  (Read 23756 times)

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Offline Brad Pritt

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Re: Low t-cell and healthy?
« Reply #100 on: January 18, 2010, 12:15:53 PM »
Etay, in the first post you mention that you are a picture of health, how can you explain this?

Quote
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
« Last Edit: January 18, 2010, 12:24:50 PM by Ann »

Offline Ann

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Re: Low t-cell and healthy?
« Reply #101 on: January 18, 2010, 12:27:37 PM »
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
« Last Edit: January 18, 2010, 12:29:17 PM by Ann »
Condoms are a girl's best friend

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"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Offline skeebo1969

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Re: Low t-cell and healthy?
« Reply #102 on: January 18, 2010, 01:30:07 PM »



   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... 

 
I despise the song Love is in the Air, you should too.

Offline Ann

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Re: Low t-cell and healthy?
« Reply #103 on: January 18, 2010, 01:46:38 PM »

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!
Condoms are a girl's best friend

Condom and Lube Info  



"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Offline skeebo1969

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Re: Low t-cell and healthy?
« Reply #104 on: January 18, 2010, 02:08:05 PM »
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.
I despise the song Love is in the Air, you should too.

Offline mecch

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Re: Low t-cell and healthy?
« Reply #105 on: January 18, 2010, 02:22:09 PM »
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.
ďFrom each, according to his ability; to each, according to his needĒ 1875 K Marx

Offline Ann

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Re: Low t-cell and healthy?
« Reply #106 on: January 18, 2010, 02:23:18 PM »

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. ::)

« Last Edit: January 18, 2010, 02:28:22 PM by Ann »
Condoms are a girl's best friend

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"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Offline Ann

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Re: Low t-cell and healthy?
« Reply #107 on: January 18, 2010, 02:27:27 PM »
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/
Condoms are a girl's best friend

Condom and Lube Info  



"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Offline justus35

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Re: Low t-cell and healthy?
« Reply #108 on: January 18, 2010, 07:25:06 PM »
 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 !
SELF MADE -DOING IT FOR MYSELF

Offline tednlou2

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Re: Low t-cell and healthy?
« Reply #109 on: January 19, 2010, 01:36:37 AM »
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
--------------------------------------------------------------------------------
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!

Offline Miss Philicia

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Re: Low t-cell and healthy?
« Reply #110 on: January 19, 2010, 07:45:58 PM »
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?
"Iíve slept with enough men to know that Iím not gay"

Offline Miss Philicia

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Re: Low t-cell and healthy?
« Reply #111 on: January 19, 2010, 07:48:56 PM »
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
--------------------------------------------------------------------------------
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
"Iíve slept with enough men to know that Iím not gay"

Offline mecch

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Re: Low t-cell and healthy?
« Reply #112 on: January 20, 2010, 09:40:27 AM »
yeah kinda stealthy and it seems this OP has really flipped out some people.
ďFrom each, according to his ability; to each, according to his needĒ 1875 K Marx

Offline Moffie65

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Re: Low t-cell and healthy?
« Reply #113 on: January 20, 2010, 02:34:50 PM »
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?
The Bible contains 6 admonishments to homosexuals,
and 362 to heterosexuals.
This doesn't mean that God doesn't love heterosexuals,
It's just that they need more supervision.
Lynn Lavne

Offline Grasshopper

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Re: Low t-cell and healthy?
« Reply #114 on: January 20, 2010, 02:47:15 PM »
 

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 ?

Offline Matty the Damned

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Re: Low t-cell and healthy?
« Reply #115 on: January 20, 2010, 02:49:52 PM »
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

Offline Grasshopper

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Re: Low t-cell and healthy?
« Reply #116 on: January 20, 2010, 02:52:29 PM »
"his God" ! .......personally I don't subscribe to the existence of such identity   ;)

Offline Matty the Damned

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Re: Low t-cell and healthy?
« Reply #117 on: January 20, 2010, 02:55:19 PM »
Then how do you attribute a nature (forgiving or otherwise) to an entity you claim doesn't exist?

;)

MtD

Offline Rev. Moon

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Re: Low t-cell and healthy?
« Reply #118 on: January 20, 2010, 03:05:57 PM »
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.
"I have tried hard--but life is difficult, and I am a very useless person. I can hardly be said to have an independent existence. I was just a screw or a cog in the great machine I called life, and when I dropped out of it I found I was of no use anywhere else."

Offline Etay1207

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Re: Low t-cell and healthy?
« Reply #119 on: January 20, 2010, 04:25:27 PM »
Moffie, you were thinking of me in the shower? That makes me feel warm and fuzzy!!! ;D ;D ;D
POZ since 1999
1/07 tcells: 530 vl: 72,922 7/07 tcells: 542 vl: 26,577
9/08 tcells: 339 vl: 56,120  7/09 tcells: 267 vl: 663,160
11/09 tcells: 71 vl: 498,670 2/10 tcells: 52 vl: 322,000
 no meds and feeling great!

Offline Matty the Damned

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Re: Low t-cell and healthy?
« Reply #120 on: January 20, 2010, 04:34:56 PM »
The Lord can see you in the shower too, Etay. ;)

MtD

Offline Moffie65

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Re: Low t-cell and healthy?
« Reply #121 on: January 20, 2010, 04:36:18 PM »
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.  ;)
The Bible contains 6 admonishments to homosexuals,
and 362 to heterosexuals.
This doesn't mean that God doesn't love heterosexuals,
It's just that they need more supervision.
Lynn Lavne

Offline mecch

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Re: Low t-cell and healthy?
« Reply #122 on: January 20, 2010, 04:42:38 PM »
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?
ďFrom each, according to his ability; to each, according to his needĒ 1875 K Marx

Offline Etay1207

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Re: Low t-cell and healthy?
« Reply #123 on: January 20, 2010, 06:33:43 PM »
Mecch, it's my own personal desicion. The thought of medication for the rest of my life? Not ready for that yet. 
POZ since 1999
1/07 tcells: 530 vl: 72,922 7/07 tcells: 542 vl: 26,577
9/08 tcells: 339 vl: 56,120  7/09 tcells: 267 vl: 663,160
11/09 tcells: 71 vl: 498,670 2/10 tcells: 52 vl: 322,000
 no meds and feeling great!

Offline Dennis

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Re: Low t-cell and healthy?
« Reply #124 on: January 20, 2010, 06:53:03 PM »
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.

Offline skeebo1969

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Re: Low t-cell and healthy?
« Reply #125 on: January 20, 2010, 06:54:03 PM »
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.
I despise the song Love is in the Air, you should too.

Offline Miss Philicia

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Re: Low t-cell and healthy?
« Reply #126 on: January 20, 2010, 07:11:52 PM »
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.
"Iíve slept with enough men to know that Iím not gay"

Offline leatherman

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Re: Low t-cell and healthy?
« Reply #127 on: January 20, 2010, 08:23:30 PM »
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!
leatherman (aka mIkIE)


chart from 1992-2013; updated 2/09/13  Reyataz/Norvir/Truvada

Offline Rev. Moon

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Re: Low t-cell and healthy?
« Reply #128 on: January 20, 2010, 08:53:52 PM »
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. 
"I have tried hard--but life is difficult, and I am a very useless person. I can hardly be said to have an independent existence. I was just a screw or a cog in the great machine I called life, and when I dropped out of it I found I was of no use anywhere else."

Offline J.R.E.

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Re: Low t-cell and healthy?
« Reply #129 on: January 20, 2010, 09:06:02 PM »
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
Current Meds ; Viramune, Epzicom, 40mg of simvastatin, 25 mg of Hydrochlorothiazide.
Metoprolol tartrate 25mg



http://forums.poz.com/index.php?topic=40802.0

http://forums.poz.com/index.php?topic=45159.0

http://forums.poz.com/index.php?topic=39722.msg495621;topicseen#msg495621

http://forums.poz.com/index.php?topic=46806.0

http://forums.poz.com/index.php?topic=39414.msg491701#msg491701


Diagnosed positive in 1985,.. In October of 2003, My t-cell count was 16, Viral load was over 500,000, Percentage at that time was 5%. I started on  HAART on October 24th, 2003.

 As of 8/25/14,  t-cells are at 402, Viral load <40

 Current % is at 11%

  
 62 years young.

Offline rioz

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Re: Low t-cell and healthy?
« Reply #130 on: January 20, 2010, 09:51:00 PM »
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
Living with HIV since 1985
Living with AIDS since 2007

Truvada, Lexiva, Norvir, Levothyroxine, Testim, Sertraline, Crestor

Offline GNYC09

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Re: Low t-cell and healthy?
« Reply #131 on: January 20, 2010, 09:58:59 PM »
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 MŁnchausen syndrome.

Offline Miss Philicia

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Re: Low t-cell and healthy?
« Reply #132 on: January 20, 2010, 11:23:42 PM »
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?

"Iíve slept with enough men to know that Iím not gay"

Offline mecch

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Re: Low t-cell and healthy?
« Reply #133 on: January 21, 2010, 06:17:00 AM »
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.
ďFrom each, according to his ability; to each, according to his needĒ 1875 K Marx

Offline bocker3

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Re: Low t-cell and healthy?
« Reply #134 on: January 21, 2010, 07:49:20 AM »
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.
Atripla - Started 12/05
Reyataz/Norvir - Added 6/06
Labs - Pre-Meds
Sep05 T=350/25% VL98,559
Nov05 288/18%  47,564
Current Labs
May2013 691/31% <20

Offline skeebo1969

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Re: Low t-cell and healthy?
« Reply #135 on: January 21, 2010, 08:15:55 AM »
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
I despise the song Love is in the Air, you should too.

Offline Sean Strub

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Re: Low t-cell and healthy?
« Reply #136 on: January 21, 2010, 10:39:36 AM »
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


Offline Miss Philicia

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Re: Low t-cell and healthy?
« Reply #137 on: January 21, 2010, 11:42:02 AM »
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.
"Iíve slept with enough men to know that Iím not gay"

Offline veritas

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Re: Low t-cell and healthy?
« Reply #138 on: January 21, 2010, 12:00:51 PM »

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

Offline Dennis

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Re: Low t-cell and healthy?
« Reply #139 on: January 21, 2010, 01:06:40 PM »
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.

Offline Miss Philicia

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Re: Low t-cell and healthy?
« Reply #140 on: January 21, 2010, 01:21:52 PM »
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.
« Last Edit: January 21, 2010, 01:24:36 PM by Miss Philicia »
"Iíve slept with enough men to know that Iím not gay"

Offline mecch

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Re: Low t-cell and healthy?
« Reply #141 on: January 21, 2010, 01:41:18 PM »
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.   
ďFrom each, according to his ability; to each, according to his needĒ 1875 K Marx

Offline Moffie65

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Re: Low t-cell and healthy?
« Reply #142 on: January 21, 2010, 01:58:51 PM »
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.
The Bible contains 6 admonishments to homosexuals,
and 362 to heterosexuals.
This doesn't mean that God doesn't love heterosexuals,
It's just that they need more supervision.
Lynn Lavne

Offline mecch

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Re: Low t-cell and healthy?
« Reply #143 on: January 21, 2010, 03:38:50 PM »
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.
ďFrom each, according to his ability; to each, according to his needĒ 1875 K Marx

Offline Miss Philicia

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Re: Low t-cell and healthy?
« Reply #144 on: January 21, 2010, 03:52:47 PM »
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.
"Iíve slept with enough men to know that Iím not gay"

Offline J.R.E.

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Re: Low t-cell and healthy?
« Reply #145 on: January 21, 2010, 06:09:49 PM »


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

Current Meds ; Viramune, Epzicom, 40mg of simvastatin, 25 mg of Hydrochlorothiazide.
Metoprolol tartrate 25mg



http://forums.poz.com/index.php?topic=40802.0

http://forums.poz.com/index.php?topic=45159.0

http://forums.poz.com/index.php?topic=39722.msg495621;topicseen#msg495621

http://forums.poz.com/index.php?topic=46806.0

http://forums.poz.com/index.php?topic=39414.msg491701#msg491701


Diagnosed positive in 1985,.. In October of 2003, My t-cell count was 16, Viral load was over 500,000, Percentage at that time was 5%. I started on  HAART on October 24th, 2003.

 As of 8/25/14,  t-cells are at 402, Viral load <40

 Current % is at 11%

  
 62 years young.

Offline Fondoo

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Re: Low t-cell and healthy?
« Reply #146 on: January 21, 2010, 06:24:05 PM »
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

Offline mecch

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Re: Low t-cell and healthy?
« Reply #147 on: January 21, 2010, 06:43:06 PM »
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. 
ďFrom each, according to his ability; to each, according to his needĒ 1875 K Marx

Offline Miss Philicia

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Re: Low t-cell and healthy?
« Reply #148 on: January 21, 2010, 07:26:31 PM »
::shakes head::
"Iíve slept with enough men to know that Iím not gay"

Offline BT65

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Re: Low t-cell and healthy?
« Reply #149 on: January 21, 2010, 08:24:07 PM »
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.......
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

 


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