Newest Members
Stormchaser, johnnyc717, bluebook, Roscoe, SJC
12314 Registered Users
Today's Birthdays
clutzygurl (22), dun (50), Gene (50), ufp1964 (50), Zoot (68)
Who's Online
0 registered (), 13 Guests and 4 Spiders online.
Key: Admin, Global Mod, Mod
Forum Stats
12314 Members
74 Forums
63355 Topics
443006 Posts

Max Online: 418 @ 07/02/12 07:29 AM
Twitter
Page 1 of 2 1 2 >
Topic Options
#260731 - 11/09/08 12:27 PM End of the drugs
duncanUK Offline
Member
MaleSurvivor

Registered: 12/24/06
Posts: 632
I am not sure how i can put this................... I have now burned all my bridges - so to speak..... I have emailed the doctor in advance of my appointment tomorrow. I have told him that i will not be going back on the drugs.. now and forever.

I will goto the hospital tomorrow and make it my one and only visit. I still cannot face the truth that i am hiv+. I want to prove to them that i can go on without the need for body damaging drugs. Since coming off of the drugs i feel a whole lot better.

If i get sick then that is down to me. I sit in that clinic waiting to be called and it pisses me off that i should be there. They scared me into taking the drugs - telling me that i will progress to full blown AIDS in the next 2-3yrs we shall see.

I hate the idea of being tied to time. always having to remember to take the drugs on time. The expense to the NHS must be staggering; which brings me to another thing. I am a burden on the whole system, money being wasted.

I had a friend over yesterday and he was upset when i told him that i have stopped taking the drugs. its my choice.





_________________________
you dont see me. i am not really here. Its my fault.. all of it. I am to blame and no one else.

Top
#260737 - 11/09/08 02:01 PM Re: end of the drugs [Re: duncanUK]
wes-b Offline
Member
MaleSurvivor

Registered: 08/17/07
Posts: 438
Loc: Western, Canada

Duncan;

I pray you change your mind... I do not know your story and have not gone totally co-dependent on you :-) and read your post history. However, since you are here that make you a brother of the wounds and I am bound to you by our common pain. We have all had enough irrational experiences and damage thru chaos that I find it difficult to type in an argument that feels like I am attempting a rational argument :-\

You speak of being a burden on the system due to the expense to the NHS for your meds... I believe that if you take the meds and carry your message/story forward that will prevent at least 1 other from contracting HIV and thus clearing your account.

If we stay on the sidelines and wallow in it we are only perpetuating the systems that let us down when we could not save ourselves.

In looking at my 30+ years before I began to heal and recover I recognize a majority of that time as spend in depression. I also see clearly how often I took the easy path of Martyrdom claiming it as the "high moral ground". Bloody Hell, the hardest things I have done have been in healing and recovery. no litany of back patting I did this I did that crap... This is just a simple truth in my life.

With love, and some anger and frustration --as your post brings up memories of my past attitudes which I still carry some shame about--

Your Brother, Wes

_________________________
Happy to be a recovering survivor. :-)

Continuing to meet more of my fellows as I "Trudge the Road of Happy Destiny".

My Story, 1st pass

Top
#260738 - 11/09/08 02:08 PM Re: end of the drugs [Re: wes-b]
steveb121 Offline
Junior Member

Registered: 01/02/01
Posts: 157
Loc: Swindon, UK



Top
#260743 - 11/09/08 02:27 PM Re: end of the drugs [Re: steveb121]
Davesc Offline


Registered: 09/24/08
Posts: 67
Loc: NJ
I just saw an old friend who is going on disability. He had HIV but could not afford the drugs. He went 2 yrs without before going to AIDS. With the AIDS diagnosis he went to a new doc who got him in touch with funding. He is now undetectable with 1200 Tcells. He has found a partner in life and is living for tomorrow. He needed some help to get there. You need some too. We all Do. Take what is offered to you. You deserve it. I deserve it. We are all human . We make mistakes. Say f**k it and move on to a new and better life. Dave

_________________________
Davesc
_______________________________________
Thankful Wor Kirkridge Alumni Oct 2008

Top
#260755 - 11/09/08 03:00 PM Re: end of the drugs [Re: Davesc]
duncanUK Offline
Member
MaleSurvivor

Registered: 12/24/06
Posts: 632
I will not be changing my mind on this subject. I just wanted to say what my intentions are. I will not be taking anymore drugs.

Tomorrow will be my final visit. I believe that this will enable me to lead a somewhat "normal" life. I look at myself in the mirror and often wonder who is staring back at me. I see another person behind the eyes but cannot work out who it is.

I was talking to my friend yesterday about a lot of things and i kept seeing horrible images in my mind and i was too ashamed to talk about that part. i am not human.





_________________________
you dont see me. i am not really here. Its my fault.. all of it. I am to blame and no one else.

Top
#260759 - 11/09/08 03:12 PM Re: end of the drugs [Re: duncanUK]
Davesc Offline


Registered: 09/24/08
Posts: 67
Loc: NJ
The shame you feel is what is killing you. Let it out. Talk to your friends. I feel such shame at times I think no one could love me. I have done horrendous things to myself and others that I am ashamed of. I am still human and worthy of forgiveness. You did not ask for this illness. Neither did I . We have it and we deserve to live. We are good We deserve good. Dave

_________________________
Davesc
_______________________________________
Thankful Wor Kirkridge Alumni Oct 2008

Top
#260766 - 11/09/08 03:22 PM Re: end of the drugs [Re: Davesc]
duncanUK Offline
Member
MaleSurvivor

Registered: 12/24/06
Posts: 632
I will have to inform work of my decision and i know they will not be happy, but i no longer care about try to make them happy. I am doing it to save myself.

_________________________
you dont see me. i am not really here. Its my fault.. all of it. I am to blame and no one else.

Top
#260843 - 11/09/08 10:28 PM Re: end of the drugs [Re: duncanUK]
Davesc Offline


Registered: 09/24/08
Posts: 67
Loc: NJ
Duncan, none of this was your fault. Rape is Rape. You are not at fault. Your life has meaning. You are young and have so much to live for. My wife and I are so pissed at your story. My HIV is my fault but you did not go looking for trouble. Don't let those bastards who raped you win. Start screaming about your story from the highest hill. You have a right. You need to keep living and that means coming to terms with your drugs. They can be managed. If you got Diabetes would you want to stop taking the insulin. The drugs can be harsh but there are lots of different ones. ONCE a day vitamins are taken once a day . Atripla is taken once a day. You can take it with you morning vitamin. You have been dealt a shitty hand, but you can still win. We want to come over there and kick your ass and show you there are lots of people who care about you. We do not know you but we care about you. Your life is worth living. You can outlive those bums that gave it to you. I wish I could be there with you during your nightmares. the doctors visits the times when you tell your story to friends and family. No one shuld go through this alone. I would like to be there with you. We care. We ALL care. Grab the life line thrown to you. Your are worth it. Bless you Duncan

_________________________
Davesc
_______________________________________
Thankful Wor Kirkridge Alumni Oct 2008

Top
#260875 - 11/10/08 08:37 AM Re: end of the drugs [Re: duncanUK]
Davesc Offline


Registered: 09/24/08
Posts: 67
Loc: NJ
Duncan, This was sent to me from one of our brothers on this site this morning. There is hope. www.plime.com Look into this site. Good news for both of us.
A friend of mine died of AIDS just before they came out with the cocktail that sustains me. His partner had the hope there would be a drug come to the market in time to save Glenn. Sadly that was not the case. For us there is time. we can live well with the help of the drugs until there is a cure. Give yourself time. Don't give up on us. You are loved. Dave

_________________________
Davesc
_______________________________________
Thankful Wor Kirkridge Alumni Oct 2008

Top
#260927 - 11/10/08 03:27 PM Re: end of the drugs [Re: Davesc]
duncanUK Offline
Member
MaleSurvivor

Registered: 12/24/06
Posts: 632
It is done. I have cancelled all future hospital visits and i will no longer be taking the drugs. I was warned today of what will happen, but i am not bothered. I dont care if i get AIDS. I am giving up on myself.



_________________________
you dont see me. i am not really here. Its my fault.. all of it. I am to blame and no one else.

Top
#260933 - 11/10/08 05:20 PM Re: end of the drugs [Re: duncanUK]
Davesc Offline


Registered: 09/24/08
Posts: 67
Loc: NJ
*

Dow Jones Reprints: This copy is for your personal, non-commercial use only. To order presentation-ready copies for distribution to your colleagues, clients or customers, use the Order Reprints tool at the bottom of any article or visit www.djreprints.com
See a sample reprint in PDF format. Order a reprint of this article now
* Need a Real Sponsor here

* NOVEMBER 7, 2008

A Doctor, a Mutation and a Potential Cure for AIDS
A Bone Marrow Transplant to Treat a Leukemia Patient Also Gives Him Virus-Resistant Cells; Many Thanks, Sample 61
By MARK SCHOOFS

* Article
* Comments

more in Health »

(See Corrections & Amplifications item below.)

The startling case of an AIDS patient who underwent a bone marrow transplant to treat leukemia is stirring new hope that gene-therapy strategies on the far edges of AIDS research might someday cure the disease.

The patient, a 42-year-old American living in Berlin, is still recovering from his leukemia therapy, but he appears to have won his battle with AIDS. Doctors have not been able to detect the virus in his blood for more than 600 days, despite his having ceased all conventional AIDS medication. Normally when a patient stops taking AIDS drugs, the virus stampedes through the body within weeks, or days.
[Dr. Gero Hutter] Sixten Koerper

Dr. Gero Hütter isn't an AIDS specialist, but he 'functionally cured' a patient, who shows no sign of the disease.

"I was very surprised," said the doctor, Gero Hütter.

The breakthrough appears to be that Dr. Hütter, a soft-spoken hematologist who isn't an AIDS specialist, deliberately replaced the patient's bone marrow cells with those from a donor who has a naturally occurring genetic mutation that renders his cells immune to almost all strains of HIV, the virus that causes AIDS.

The development suggests a potential new therapeutic avenue and comes as the search for a cure has adopted new urgency. Many fear that current AIDS drugs aren't sustainable. Known as antiretrovirals, the medications prevent the virus from replicating but must be taken every day for life and are expensive for poor countries where the disease runs rampant. Last year, AIDS killed two million people; 2.7 million more contracted the virus, so treatment costs will keep ballooning.

While cautioning that the Berlin case could be a fluke, David Baltimore, who won a Nobel prize for his research on tumor viruses, deemed it "a very good sign" and a virtual "proof of principle" for gene-therapy approaches. Dr. Baltimore and his colleague, University of California at Los Angeles researcher Irvin Chen, have developed a gene therapy strategy against HIV that works in a similar way to the Berlin case. Drs. Baltimore and Chen have formed a private company to develop the therapy.

Back in 1996, when "cocktails" of antiretroviral drugs were proved effective, some researchers proposed that all cells harboring HIV might eventually die off, leading to eradication of HIV from the body -- in short, a cure. Those hopes foundered on the discovery that HIV, which integrates itself into a patient's own DNA, hides in so-called "sanctuary cells," where it lies dormant yet remains capable of reigniting an infection.

But that same year, researchers discovered that some gay men astonishingly remained uninfected despite engaging in very risky sex with as many as hundreds of partners. These men had inherited a mutation from both their parents that made them virtually immune to HIV.

The mutation prevents a molecule called CCR5 from appearing on the surface of cells. CCR5 acts as a kind of door for the virus. Since most HIV strains must bind to CCR5 to enter cells, the mutation bars the virus from entering. A new AIDS drug, Selzentry, made by Pfizer Inc., doesn't attack HIV itself but works by blocking CCR5.

About 1% of Europeans, and even more in northern Europe, inherit the CCR5 mutation from both parents. People of African, Asian and South American descent almost never carry it.

Dr. Hütter, 39, remembered this research when his American leukemia patient failed first-line chemotherapy in 2006. He was treating the patient at Berlin's Charité Medical University, the same institution where German physician Robert Koch performed some of his groundbreaking research on infectious diseases in the 19th century. Dr. Hütter scoured research on CCR5 and consulted with his superiors.

Finally, he recommended standard second-line treatment: a bone marrow transplant -- but from a donor who had inherited the CCR5 mutation from both parents. Bone marrow is where immune-system cells are generated, so transplanting mutant bone-marrow cells would render the patient immune to HIV into perpetuity, at least in theory.

There were a total of 80 compatible blood donors living in Germany. Luckily, on the 61st sample he tested, Dr. Hütter's colleague Daniel Nowak found one with the mutation from both parents.

To prepare for the transplant, Dr. Hütter first administered a standard regimen of powerful drugs and radiation to kill the patient's own bone marrow cells and many immune-system cells. This procedure, lethal to many cells that harbor HIV, may have helped the treatment succeed.

The transplant specialists ordered the patient to stop taking his AIDS drugs when they transfused the donor cells, because they feared the powerful drugs might undermine the cells' ability to survive in their new host. They planned to resume the drugs once HIV re-emerged in the blood.

But it never did. Nearly two years later, standard tests haven't detected virus in his blood, or in the brain and rectal tissues where it often hides.

The case was presented to scientists earlier this year at the Conference on Retroviruses and Opportunistic Infections. In September, the nonprofit Foundation for AIDS Research, or amFAR, convened a small scientific meeting on the case. Most researchers there believed some HIV still lurks in the patient but that it can't ignite a raging infection, most likely because its target cells are invulnerable mutants. The scientists agreed that the patient is "functionally cured."

Caveats are legion. If enough time passes, the extraordinarily protean HIV might evolve to overcome the mutant cells' invulnerability. Blocking CCR5 might have side effects: A study suggests that people with the mutation are more likely to die from West Nile virus. Most worrisome: The transplant treatment itself, given only to late-stage cancer patients, kills up to 30% of patients. While scientists are drawing up research protocols to try this approach on other leukemia and lymphoma patients, they know it will never be widely used to treat AIDS because of the mortality risk.

There is a potentially safer alternative: Re-engineering a patient's own cells through gene therapy. Due to some disastrous failures, gene therapy now "has a bad name," says Dr. Baltimore. In 1999, an 18-year-old patient died in a gene therapy trial. Even one of gene therapy's greatest successes -- curing children of the inherited "bubble boy" disease -- came at the high price of causing some patients to develop leukemia.
[Chart]

Gene therapy also faces daunting technical challenges. For example, the therapeutic genes are carried to cells by re-engineered viruses, and they must be made perfectly safe. Also, most gene therapy currently works by removing cells, genetically modifying them out of the body, then transfusing them back in -- a complicated procedure that would prove too expensive for the developing world. Dr. Baltimore and others are working on therapeutic viruses they could inject into a patient as easily as a flu vaccine. But, he says, "we're a long way from that."

Expecting that gene therapy will eventually play a major role in medicine, several research groups are testing different approaches for AIDS. At City of Hope cancer center in Duarte, Calif., John Rossi and colleagues actually use HIV itself, genetically engineered to be harmless, to deliver to patients' white blood cells three genes: one that inactivates CCR5 and two others that disable HIV. He has already completed the procedure on four patients and may perform it on another.

One big hurdle: doctors can't yet genetically modify all target cells. In theory, HIV would kill off the susceptible ones and, a victim of its own grim success, be left only with the genetically engineered cells that it can't infect. But so far that's just theory. All Dr. Rossi's patients remain on standard AIDS drugs, so it isn't yet known what would happen if they stopped taking them.

In 1989, Dr. Rossi had a case eerily similar to the one in Berlin. A 41-year-old patient with AIDS and lymphoma underwent radiation and drug therapy to ablate his bone marrow and received new cells from a donor. It is not known if those cells had the protective CCR5 mutation, because its relation to HIV hadn't been discovered yet. But after the transplant, HIV disappeared from the patient's blood. The patient died of his cancer 47 days after the procedure. Autopsy tests from eight organs and the tumor revealed no HIV.

Write to Mark Schoofs at mark.schoofs@wsj.com
Corrections & Amplifications

_________________________
Davesc
_______________________________________
Thankful Wor Kirkridge Alumni Oct 2008

Top
#261012 - 11/11/08 01:04 AM Re: end of the drugs [Re: Davesc]
duncanUK Offline
Member
MaleSurvivor

Registered: 12/24/06
Posts: 632
i read that article and it is not as simple as that. There a whole load of obstacles to overcome to make it viable. i will not be adding anything further to this thread

_________________________
you dont see me. i am not really here. Its my fault.. all of it. I am to blame and no one else.

Top
#261056 - 11/11/08 08:44 AM Re: end of the drugs [Re: duncanUK]
Davesc Offline


Registered: 09/24/08
Posts: 67
Loc: NJ
Duncan, I did not say it was easy ,I did not say it will be tomorrow, I just said there is hope. I live with that thought. Someday I may be cured. Until then I want to live and love. Dave

_________________________
Davesc
_______________________________________
Thankful Wor Kirkridge Alumni Oct 2008

Top
#261092 - 11/11/08 02:28 PM Re: end of the drugs [Re: Davesc]
duncanUK Offline
Member
MaleSurvivor

Registered: 12/24/06
Posts: 632
There will never be a cure, just drugs after drugs. thats where the money is. i do not trust the idea of using other viruses for gene therapy either. I can see that going wrong and a new disease would emerge.

I believe i have done what is right for me. I do not need the drugs. I will not be going back for further tests either - this will save them some money.


_________________________
you dont see me. i am not really here. Its my fault.. all of it. I am to blame and no one else.

Top
#261095 - 11/11/08 03:18 PM Re: end of the drugs [Re: duncanUK]
Davesc Offline


Registered: 09/24/08
Posts: 67
Loc: NJ
Hi Duncan, My wife and i were wondering how old you are and if your parents know of the infection. We have a 28 and a 24yr old and we wondered about you parents. Do you have any support from your family? I don't think I would ever want my kids giving up on life. Dave

_________________________
Davesc
_______________________________________
Thankful Wor Kirkridge Alumni Oct 2008

Top
#261097 - 11/11/08 03:41 PM Re: end of the drugs [Re: Davesc]
duncanUK Offline
Member
MaleSurvivor

Registered: 12/24/06
Posts: 632
** ADMIN STAFF PLEASE COULD THIS POST BE DELETED AS IT IS CAUSING ISSUES, AND MY DIRECTION OF FOCUS IS CHANGING**


_________________________
you dont see me. i am not really here. Its my fault.. all of it. I am to blame and no one else.

Top
Page 1 of 2 1 2 >


Moderator:  Chase Eric, ModTeam 

I agree that my access and use of the MaleSurvivor discussion forums and chat room is subject to the terms of this Agreement. AND the sole discretion of MaleSurvivor.
I agree that my use of MaleSurvivor resources are AT-WILL, and that my posting privileges may be terminated at any time, and for any reason by MaleSurvivor.