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Author Topic: Low t-cell and healthy?  (Read 62131 times)

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Offline leatherman

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Re: Low t-cell and healthy?
« Reply #150 on: January 21, 2010, 08:38:09 pm »
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.
leatherman (aka Michael)

We were standing all alone
You were leaning in to speak to me
Acting like a mover shaker
Dancing to Madonna then you kissed me
And I think about it all the time
- Darren Hayes, "Chained to You"

Offline leatherman

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Re: Low t-cell and healthy?
« Reply #151 on: January 21, 2010, 08:41:02 pm »
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.
leatherman (aka Michael)

We were standing all alone
You were leaning in to speak to me
Acting like a mover shaker
Dancing to Madonna then you kissed me
And I think about it all the time
- Darren Hayes, "Chained to You"

Offline skeebo1969

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Re: Low t-cell and healthy?
« Reply #152 on: January 21, 2010, 08:52:34 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... 

 

  Skeebo,

     I just wanted to tell you that I agree with you.
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 #153 on: January 21, 2010, 09:02:36 pm »
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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"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

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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 Miss Philicia

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Re: Low t-cell and healthy?
« Reply #154 on: January 21, 2010, 09:12:52 pm »
"ilk" is such an operative word
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Offline Fondoo

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Re: Low t-cell and healthy?
« Reply #155 on: January 21, 2010, 09:53:36 pm »
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.

Offline Ann

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Re: Low t-cell and healthy?
« Reply #156 on: January 21, 2010, 10:04:15 pm »
"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
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 GNYC09

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Re: Low t-cell and healthy?
« Reply #157 on: January 21, 2010, 10:06:11 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

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
« Last Edit: January 21, 2010, 10:07:45 pm by GNYC09 »

Offline leatherman

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Re: Low t-cell and healthy?
« Reply #158 on: January 21, 2010, 10:45:02 pm »
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.
leatherman (aka Michael)

We were standing all alone
You were leaning in to speak to me
Acting like a mover shaker
Dancing to Madonna then you kissed me
And I think about it all the time
- Darren Hayes, "Chained to You"

Offline PeteNYNJ

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Re: Low t-cell and healthy?
« Reply #159 on: January 22, 2010, 12:17:02 am »
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

Offline skeebo1969

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Re: Low t-cell and healthy?
« Reply #160 on: January 22, 2010, 12:46:39 am »


  This is my last time posting in this thread.... Just wanted to make everyone aware.

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

Offline Dennis

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Re: Low t-cell and healthy?
« Reply #161 on: January 22, 2010, 12:46:47 am »
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.

Offline PeteNYNJ

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Re: Low t-cell and healthy?
« Reply #162 on: January 22, 2010, 12:51:33 am »
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

Offline skeebo1969

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Re: Low t-cell and healthy?
« Reply #163 on: January 22, 2010, 01:06:24 am »
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

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

Offline PeteNYNJ

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Re: Low t-cell and healthy?
« Reply #164 on: January 22, 2010, 01:11:37 am »
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. 

Offline Dennis

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Re: Low t-cell and healthy?
« Reply #165 on: January 22, 2010, 01:23:36 am »
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.

Offline PeteNYNJ

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Re: Low t-cell and healthy?
« Reply #166 on: January 22, 2010, 01:31:31 am »
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

Offline StrongGuy

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Re: Low t-cell and healthy?
« Reply #167 on: January 22, 2010, 01:42:00 am »
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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Offline anniebc

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Re: Low t-cell and healthy?
« Reply #168 on: January 22, 2010, 01:55:57 am »
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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Offline mecch

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Re: Low t-cell and healthy?
« Reply #169 on: January 22, 2010, 04:52:40 am »
this thread just went back on track to be a trainwreck.
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline Dachshund

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Re: Low t-cell and healthy?
« Reply #170 on: January 22, 2010, 04:59:40 am »
this thread just went back on track to be a trainwreck.

Wouldn't that be off track?

Offline phildinftlaudy

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Re: Low t-cell and healthy?
« Reply #171 on: January 22, 2010, 08:01:30 am »
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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Labs:
Date    CD4    %   VL     Date  CD4  %   VL
10/08  636    35  510   9/09 473  38 2900  12/4/09 Atripla
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12/10  740    41  <48   
8/11    667    36  <20  
03/12  1,041  42  <20
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Offline Moffie65

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Re: Low t-cell and healthy?
« Reply #172 on: January 22, 2010, 10:10:21 am »
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.  ;)
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.
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Offline mecch

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Re: Low t-cell and healthy?
« Reply #173 on: January 22, 2010, 12:02:30 pm »
It was off the track, almost frozen. Then back on the track, but its heading for a trainwreck. Full speed.
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline Fondoo

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Re: Low t-cell and healthy?
« Reply #174 on: January 22, 2010, 05:42:00 pm »
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.

 


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