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Danielle
Unregistered

i need advice
      #17339 - 04/11/01 11:38 PM

i have never used this forum before, but i'm totally having one of those "my life sucks days" why? because it does, well not really, just lately i've been feeling like it. how do you "long term survivors" do this. these drugs are killing me, i can feel it. any advice on how to make this work? and please, no quotes from RENT, or cliches on how to live life to the fullest and enjoy each day, i appriciate that stuff, but it's not what i want to hear right now. thanks.



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Anonymous
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Re: i need advice new
      #17342 - 04/12/01 07:21 AM

Not all drug combinations work for everyone. It does take time to get use to the medicine. If however, you have tried your combination for about a month and still have side effects you can't deal with, then see about switching to something else. A lot of the newer meds have less side effects to deal with and easier dosing schedules.



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Gus
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Re: i need advice new
      #17359 - 04/13/01 01:45 AM

Hi There. Days like that are hard to bear with, but do hang in there as I can guarantee there is light at the end of the tunnel. In 1984 when I first tested poz, there were no drugs and no hope. People just died. Now there is hope and there are options - and if there is one thing I have learnt about living with this virus, is that I have seen, particularly in recent years, there is a new glimmer of new hope every year.

Okay, enough of the philosophies. First to the drugs. If your drugs are vile, change them. I went on drugs for the first time 12 months ago - and my health is the best it has been in years. I am on Nevirapine, 3TC and 1592 - and it is working brilliantly. The 1592 had to replace that revolting AZT that I was initially put on. If AZT is part of your cocktail and you are feeling like this, change it. You do have options - it is not the old days. There is a whole shelf to chose from. Don't be fearful. it is about the quality of your life. There is a glimmer of hope.

The other thing about the drugs is they can be pretty toxic. But there are things you can do about balancing that in your body through diet, vitamins and herbs. Read Dr Jon Kaiser's book - Healing HIV - which makes the most sense of any of the literature out there on living with this virus. So much of what he says makes sense - balance the best of modern medicine with the best of alternative medicine and it can be a truly winning combination. And it does work. I am walking proof - poz 17 years, no illnesses, no side effects or body changes. It took a few goes to get the combination right, but God bless it as it is working and I feel great. But I do the herbs and vitamins as religiously as I do the drugs.

Anyway, read Kaiser's book, maybe change your doctor and do not give up hope. You have options.

Take care,
Gus



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Anonymous
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Thanks Gus new
      #17370 - 04/13/01 02:38 PM

Thank you Gus, it has only been two days, but I'm feeling a lot better. That afternoon I worked things out a lot with my doctor and we are trying something new. Take care,
Danielle



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Anonymous
Unregistered

Re: i need advice new
      #17408 - 04/16/01 09:26 PM

Hey Gus...I just finished reading Dr. Kaisers book and also think he is right on target. Just wondering, do you see him or just follow his suggestions in the book? I have spoke with him on the phone and am thinking about flying out to San Francisco to see him. I'm on my 3rd HIV doc and have been very disappointed with the quality of care I have been getting. I think everyone who has HIV should read this book. Everyone needs to take charge of their own health care, learn all you can, the wrong doc can shorten your life.



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Gus
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Hi Danielle new
      #17625 - 04/28/01 01:04 AM

Hi Danielle. Glad to hear things are getting better. And they do. Some days are just so shitty, you wonder if it will get better. Well, it does and you have to charge on. Check out the Dr Kaiser book and if you are in Califronia, make a trip to see him in San Francisco. I am in Sydney, Australia and so inspired by what he says in the book, I am considering a trip across the Pacific to see him. I have a brilliant Professor, Doctor and Herbalist working for me, but the best way to know what is right for you is information and opinions. And have you tried a Support group? I did one two years ago when I was not feeling great, but terrified to go on treatments after 15 years of not needing to. The support group was fascinating to hear of so many other people's experiences. Really helped me at the time. Maybe it will work for you.

If you ever want to drop me a line direct, I am on guscarnegie@hotmail.com.

All the best,
Gus



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