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breathe
Newbie

Reged: 02/06/06
Posts: 3
Loc: Oklahoma
maintaining hope
      #173596 - 02/06/06 12:57 AM

I have been taking meds for three years now and phenotype and genotype testing have shown i have extreme resistance i think i may have one regiment that may work and it would include fuzeon....im just trying to remember we are not guaranteed any amount of time on this planet and to keep on plowing forward keeping the right attitude. if anyone has resistant virus and has been or is going through what i am it would be nice to hear from you


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Anonymous
Unregistered

Re: maintaining hope new
      #173638 - 02/06/06 09:02 AM

I'm so sorry to read about your situation. I wish you all the luck in the world with the remaining regimen option.

It saddens me because there are people out there & on this board who are oblivious to the fact that resistant strains exist and steadfastly cling to the notion that HIV is manageable for everyone, or at least everyone who has access to meds.

And you are right, our time is not guaranteed in this world. What matters is that we make the best of the time we have.

All the very best to you.

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AIDS2HIV
Legend

Reged: 12/19/05
Posts: 2200
Re: maintaining hope new
      #173656 - 02/06/06 10:14 AM

hi breathe...
I have some friends in the same boat, they all say Fuzeon has done wonders in them. I asked my specilaist about Fuzeon and he says the same, its a very good thing. Keep Your chin up, and be selective about what you let into your life. things like stress,depression,etc do have an impact on your body and how well it performs with this disease.Many factors do contribute to resistance as well. While a small few are naturally just resistant, many can contribute to thier resistance. I'm not saying that is you. It is possible through poor lifestyles,etc.
We here who have this know the ins and outs of "managing" this disease. Its not about meds available, finances etc...<that stuff is all relied upon by political bodies,governments,etc. It is Sad that some people dont have meds available, or live in places that are in financial ruin, thats not something to be blamed on hiv/aids though. Thats something ya can thank the politicians, regardless of what type of government it is, when we say its "managable" we mean it doesnt have to dictate and overwhelm your present quality of life. Death is something we will all have to face regardless of who we are. Theres many factors that go into "managability" of this disease nutrition, excersise, lifestyle changes, spiritual changes, many many things. Some people here, on these boards dont even have this disease, yet they feel qualified to magnify certain things they read, into something its not, then use it as tool to debate thier poor outlook on hiv/aids. Its difficult to accurately tell someone how to manage it when the teller, doesnt have it, or does have it, but has such a poor quality of life themselves. It's not hiv/aids that kills us, it just weakens our immune systems so that something else can come along and get to us, and contrary to others beliefs that certainly is managable*

If you need to talk or wish to get help on " managing" this....i STRONGLY suggest ya find someone who not only has this disease as well, but have "managed" it well in thier own lives. If you need to talk, feel free to send me a private message. theres quite a few winners on this board that actually have this disease, live with it daily, and are able to manage it......Good Luck and God Bless

--------------------
Thinking about meeting someone from this site? Read my profile before you do.

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Survivor
Legend

Reged: 10/30/05
Posts: 3256
Loc: Get off the fence and live again!
Re: maintaining hope new
      #173679 - 02/06/06 11:43 AM

Breathe,

Welcome to thebody.. It so good to have you here. I understand Fuzeon is one of the last lines of defense against our virus. I have also heard its very powerful and generally works well. I hope this is your case. Your outlook on life seems to be right in line with where you are with this virus. I applaud you for that. I pray that the powers that be are dealing with these resistance issues in the drug discovery pipeline. Do you keep current with these potential advancements? I cannot put myself in your shoes as I am 1 week into therapy and have no resistance issues as yet. But, I know that could change on any given day. So, we prepare for what lies ahead. Our outlook is more on the lines of "what will be, will be.". We try our best and make the most out of this... I think early on (for me) have gained some acceptance about what could and will lie ahead for me good or bad. My life has a ultimate ending date. That really makes no difference to me right now. When its time for me to move on, I will move and I will know its the right thing to do. I am thankful I have been given what I have already experienced here...

My Best wishes to you,

Love

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breathe
Newbie

Reged: 02/06/06
Posts: 3
Loc: Oklahoma
Re: maintaining hope new
      #173691 - 02/06/06 01:15 PM

Thank you everyone who replied to my post...I have made so many lifestyle changes since being diagnosed so i have my disease to thank for that, it definately pulled me out of the haze i was in.....I have been researching and there are new drugs in the pipeline and it seems researchers are looking at resistance..sometimes, not often my thoughts get dark, and then i must pull myself up and out of that thinking.....Im so grateful to even have access to treatment

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Survivor
Legend

Reged: 10/30/05
Posts: 3256
Loc: Get off the fence and live again!
Re: maintaining hope new
      #173693 - 02/06/06 01:37 PM

Breathe,

We have all been there in that dark place.. But there is alot of light to be found in the people found here.. Please keep sharing with us.

Love

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Big_S
Newbie

Reged: 02/09/06
Posts: 1
Re: maintaining hope new
      #174232 - 02/09/06 01:47 AM

Breathe-
Like yourself I was at my last option in Dec 04. I was resistant to just about eveything so my final options were Fuzeon, Taprnivir (Aptivus), Viread, and Norvir(as a booster).
My CD4 starting out was 6 and my VL was +750,000. Slowly but surely my numbers improved. Now a year later my CD4 is 164 and my VL is finally undectable.

Fuzeon is not that bad, and if you have a fuzeon support group in your area I would recomend going (I just got home from mine). You will be suprised at how easy it is to adjust.

I too had given up hope, but now I think I'm gonna stick around a little longer. So take the meds, be compliant, and soon you will be giving someone else this same advice.
Best of luck and let us know how you are doing!

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imoneofyou
Unregistered

Re: maintaining hope new
      #175037 - 02/14/06 05:56 PM

I was reading about this person who has drug failures with almost all the regimines,maybe this will help you.A good friend of mine'also pos only he has been 27 years.Maybe this will shine a ray of hope in your life,he became resistant to Everything! The dr. stopped all meds for 6 months until the virus mutated and then once again meds started working.I hope this helps you to be encouraged to keep on keeping on. GOOD LUCK from one who has been pos 8 years

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