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Author Topic: Is this all true?????  (Read 2993 times)

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Offline egello

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  • Posts: 899
  • cb
Is this all true?????
« on: January 18, 2007, 10:42:13 PM »
By now, I should know, after cd4 being 11, thrush and PCP, however, as soon as I start feeling fine, I doubt that I am really sick. I have to start my med tomorrow, and I am completely dreding starting them. I know that once I start, I need to keep on....

At cd4 11, am I really at risk for other infections? Is that all true? I would hate to be taking those hiv med for nothing. I feel like I am walking into a prison cell guided by my doctor. Since getting pcp the only other pain i got was all from side effects of antibiotics, vaccines and other various shots. What if my cd4 count was always very low all my life? Why can't I just keep taking prophylaxis and do nutritional therapy? Arggghhhh,,,,, Has anyone felt this way before starting their meds?
Reyataz / Norvir / Truvada/ Androgel 5 g / 2 days
1/29/07 14 T, 300 k V, 1.8 %
2/22/07 197 T, 247 V, 6.8 %
3/27/07 164 T, <50 V, 5.4 %
5/28/07 177 T, <50 V, 8.2 %
7/28/07 214 T, <50 V, 9.6 %
10/3/07 380 T, <50 V, 10 % no more Mepron, Famvir

Offline Eldon

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  • Posts: 2,664
Re: Is this all true?????
« Reply #1 on: January 18, 2007, 10:49:46 PM »
At this point you have a compromised immune system and it is best to start your meds in order to initiate operation viral load supression. While they are surpressed this gives your body the advantage it needs to rebuild what has been torn down.

When your immune system is weak it does expose you to other infectious diseases. Starting your meds is that best choice that you could make right now in order to regain control of your immune system. It is true.


"What Can I do today to make a better Tommorrow?"
« Last Edit: January 18, 2007, 11:00:41 PM by Eldon »

Offline Eldon

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Re: Is this all true?????
« Reply #2 on: January 18, 2007, 10:52:04 PM »
By The Way...


Hi Egello, my name is Eldon and I am also HIV positive. You are not alone with this unfortunate circumstance that has taken place in your life. Communication is key.

Here you will find acceptance, understanding, communication, support, some cries, some laughter and much more. This site is infused with a lot of good information in order to HELP you with any questions that you may have on HIV/AIDS.

From my personal experience here, this is a great group of individuals who will listen as we as answer back to you. I have learned so much more by being here with my interaction with the others.

A few suggestions to HELP you on your Journey:

1. A Positive Mental Attitude
2. A Good Exercise Routine
3. A Good Balanced Diet
4. A Good Strong Support System

Feel free to browse through the many variations of topics here and also share with what is on your mind.

Welcome to our community!

Offline Coffeechick88

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  • Posts: 431
Re: Is this all true?????
« Reply #3 on: January 18, 2007, 11:13:23 PM »
You better believe you are at risk for other infections.  You are at a point where prophylaxis alone will not be sufficient.  And your CD4 count would not be that low all your life.  I do understand being fearful of meds, because I was once there.  My doctor finally made me realize I had two choices:  go on meds or let my immune system deteriorate to the point I was in more danger than I was.  He was very forceful about it and said I can't screw around anymore, but he was right.
Lucas James is here
Born 6-14-08 at 1233 am
8 lbs 14 oz, 22 in long

Offline Life

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  • Posts: 2,388
  • Member 2005
Re: Is this all true?????
« Reply #4 on: January 18, 2007, 11:18:55 PM »
Egello..  As others have said, if your absolute cd4 count is 11.  Your pretty wide open for infection.  You really have no options left,  take the meds.  Build back your immune system.   Its your life my friend we are talking about.....

Hugs,

Offline koi1

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  • Posts: 713
Re: Is this all true?????
« Reply #5 on: January 19, 2007, 08:53:47 AM »
Hey Egello,

I was at 97 when diagnosed. But I imagine I had a much higher cd4count when my digestive system started to go down the toilet. Since then, I got pcp, thrush, eye problems, bad diahrrea... So yes, there are millions of things that can go wrong with you if you don't get on those meds. My condition began to improve in just a few days! The side effects will probably be minor for you. For some reason people only want to hear the negative side of the meds. There are lots of us doing fine on meds with little or now side effects.

Best of Luck

rob
diagnosed on 11/20/06 viral load 23,000  cd4 97    8%
01/04/07 six weeks after diagnosis vl 53,000 cd4 cd4 70    6%
Began sustiva truvada 01/04/07
newest labs  drawn on 01/15/07  vl 1,100    cd4 119    7%
Drawn 02/10/07
cd4=160 viral load= 131 percentage= 8%
New labs 3/10/07 (two months on sustiva truvada
cd4 count 292  percentage 14 viral load undetectable

Offline poet

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  • Poet living and working in Central Maine
Re: Is this all true?????
« Reply #6 on: January 19, 2007, 09:25:29 AM »
Egello,  I think that everyone pauses at some point prior to starting meds.  Each person and/or each person's doctor may have a different point at which to start them.  There is, however, no question that your cd4 count would not be as low as it currently is were it not for hiv and other infections, some of which you may be aware and some of which may be working quietly and undetected in the background.  Get the lab results sheet out and note the 'normal' range and so just how far off from normal you are. 

That said, if you have the time, pour through the threads here for posts from others at a similar point.  Many of them dreaded starting but then had no side effects at all.  And, if it helps you, keep posting here so that we can keep track of your progress?  Best, Win
Winthrop Smith has published three collections of poetry: Ghetto: From The First Five; The Weigh-In: Collected Poems; Skin Check: New York Poems.  The last was published in December 2006.  He has a work-in-progress underway titled Starting Positions.

Offline aztecan

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  • Posts: 5,382
  • 29 years positive, 56 years a pain in the butt
Re: Is this all true?????
« Reply #7 on: January 19, 2007, 09:53:46 AM »
Hey Egello,
First, as others have already said, Yes, it is time to start meds.

You have already had PCP, which can occur in anyone with CD4s of less than 200. I have seen it happen in those with somewhat higher CD4 levels.

There are a host of other bacterial, microbial, protozoal, fungal and parasitic infections that could affect you.

I'm not trying to be overly alarmist. I am just pointing out what can happen.

Many people seem to fear the meds. I guess there are valid reasons and, yes., some people do have severe side effects.

But I think those fears and the experiences of some must be balanced with a knowledge of what can - and too often does - happen without them.

As Rob pointed out, many people take meds with few or no side effects. Today's regimens are much simpler and easier to live with than in the old days.

For the record, I am heading toward 11 years on meds and am doing well enough that the perils of old age now loom before me.

Because of your low CD4 level, there are some things I would do, were I you, to help preserve my health.

Chief among those would be to be very cautious about what I eat. People with advanced HIV disease are between 20 and 200 times more likely to develop serious food-borne illnesses.

Some things to do:

All animal products (meats, poultry, fish, eggs) must be thoroughly cooked. No medium rare steaks or roasts, no raw sushi or sashimi, no over-easy eggs or eggs with runny yolks.

No unpasteurized dairy products, including cheese (read the labels, some are made with unpasteurized milk).
(Edited to add: Also avoid soft-ripened cheeses such as camembert, brie, roquefort, bleu, etc., because of the risk of Kemplobacter sp?)

All fruits and vegetables must be washed thoroughly. Many people use a weak bleach solution (one cap per gallon of water) to do this. There also are produce washes availiable.

Proper kitchen hygiene is crucial. Never cut meat and produce on the same cutting board or with the same utencils. Wash your hands with soap and water after handling raw meat, poultry or fish, especially before preparing other foods.

Never eat any leftovers that may have been in the refrigerator for too long. (This is a lesson recently reinforced for me. I was retaught a harsh lesson thanks to my complacency.)

My motto is: When in doubt, throw it out. Three days and its history.

Drink bottled or filtered water if possible.

Never eat foods from street vendors. It also is best to avoid buffets because the foods often are not maintained at temperature levels that prevent the growth of bacteria. Also, if it is one of those "serve yourself" types, contamination is probable, especially if children are present.

Don't go grocery shopping and let the groceries sit in the car while you do other errands. Take them home and put the things needing refrigeration away immediately.

Like I said, I am not trying to alarm you. But you must be the guardian of your own health and these are some simple yet very effective steps that can be taken to help you avoid becoming ill.

HUGS,

Mark

« Last Edit: January 19, 2007, 10:02:05 AM by aztecan »
"May your life preach more loudly than your lips."
~ William Ellery Channing (Unitarian Minister)

Offline Boo Radley

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  • Not a "real man" and damn proud, mithter... FAB
    • Animal Rescue New Orleans
Re: Is this all true?????
« Reply #8 on: January 19, 2007, 10:06:09 PM »
egello,

Unlike everyone else I'm not going to tell you to start meds immediately -- if you are not serious about adhering to your regimen the meds will mostly be wasted.   If you don't start meds you can be sure there will be more and more opportunistic infections (OIs) and they will get much worse.  With your CD4 count there may already be incipient infections which will make your life miserable even after you start meds.  The prophylactic drugs you take will be necessary until your CD4 gets to and stays above the 200 range, a pretty long way from 11. 

I waited for many years before starting meds but my CD4 count was 169 at its lowest.  At that point I knew it was meds or a future full of OIs.  I was one of the many lucky ones for whom side-effects were minor and short-lived.  No one can guarantee there won't be unpleasant side effects from meds but the option is to allow bacteria, fungi, and other commonly found pathogens, that don't harm me or other people with fairly intact immune systems, to begin the slow job of killing you.

My best friend died in 1997 because by the time he began meds he was so weak and riddled with OIs and other medical problems (he went blind in one weekend) he literally could not stand the side effects.  Please read as much as you can to help yourself understand that by any HIV guidelines in existence it is time for you to give meds your best effort.  Complementary therapies like improved nutrition are fine but none will stop your immune system decline and stop AIDS.  If they did we would all know about them!

I understand your reluctance to start chemotherapy but you are past the point of starting, as the PCP and thrush demonstrated.  Prophylaxis may keep them at bay now but there are tons of other OIs that are as bad and worse. 

Talk to your doctor about your concerns and follow her/his instructions for ways to deal with side effects and always ask questions here where you'll get answers from people like you, living with HIV. 

I lied in saying I wasn't going to tell you to start meds but I hope what I and everyone else has said sinks in. 

Please keep posting to the forums and let us know how you're doing.

Boo
String up every aristocrat!
Out with the priests and let them live on their fat!





Everything I do, say, think, excrete, secrete, exude, ooze, or write 2007 Sweet Old Boo, Inc.

Offline AIDS2HIV

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  • Posts: 96
    • www.aids2hiv.com
Re: Is this all true?????
« Reply #9 on: January 19, 2007, 11:34:51 PM »
without meds, and tcells that low....IF an OI was to get going in you, theres good chance you wouldnt survive it.

how do i know?....i was one of these people who didnt know my status, and when i got an uncontrollable fever and was diagnosed...i had 15 Tcells, but i wasnt lucky as you, because unbenounced to everyone, i had a few infections......my confirmatory WB test hadnt even made it back yet, before i was hospitalized clingin to life....and, i felt fine up until i got the fever....the fever lasted 3 months* The hospital's sent me home to die, and had i not gotten a different doctor and meds, it would have finished what it started.....today, I'm the winner*

does that answer your question?
Its the future of Hiv Education, and Resources www.aids2hiv.com      Got Community?

Offline egello

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  • Posts: 899
  • cb
Re: Is this all true?????
« Reply #10 on: January 20, 2007, 01:18:39 AM »
yes,,, wow,,, what other infections did you have? this all seem like a science fiction doesn't it?

since pcp (over the christmas), i've been feeling fine except for reactions to certian prophylaxis. does this mean that i could still have undiagonosed OI? there is only so much that my doctor can do in terms of prevention

anyhow, i started taking the hiv med today.

is there anything I can do to watch out for any further OI?
Reyataz / Norvir / Truvada/ Androgel 5 g / 2 days
1/29/07 14 T, 300 k V, 1.8 %
2/22/07 197 T, 247 V, 6.8 %
3/27/07 164 T, <50 V, 5.4 %
5/28/07 177 T, <50 V, 8.2 %
7/28/07 214 T, <50 V, 9.6 %
10/3/07 380 T, <50 V, 10 % no more Mepron, Famvir

Offline joemutt

  • Member
  • Posts: 1,039
Re: Is this all true?????
« Reply #11 on: January 20, 2007, 01:28:32 AM »
Good luck with the meds Egello, once I started meds everything improved quickly.

Offline yowsaa

  • Member
  • Posts: 86
Re: Is this all true?????
« Reply #12 on: January 20, 2007, 01:48:28 AM »

anyhow, i started taking the hiv med today.


egello,
As I was reading your thread here, I could not help but feel such an alarming fear for your well being. Your quote above was great to see !
You have now taken a giant first leap towards improved health. You will definately be in my prayers tonight.

Offline AIDS2HIV

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    • www.aids2hiv.com
Re: Is this all true?????
« Reply #13 on: January 20, 2007, 10:37:51 AM »
yes,,, wow,,, what other infections did you have? this all seem like a science fiction doesn't it?

since pcp (over the christmas), i've been feeling fine except for reactions to certian prophylaxis. does this mean that i could still have undiagonosed OI? there is only so much that my doctor can do in terms of prevention

anyhow, i started taking the hiv med today.

is there anything I can do to watch out for any further OI?

I had aids related dementia, aids related wasting syndrome,CMV, and a few others,that i cant recall at the moment. My memory recall,along with a few other neurological functions, was sacrificed in my surviving.

As for what else ya can do.....discipline yourself in these areas: Strict medication adherence, start eating right, and excercising regularly, keep your mind sharp (on positive things), and finally, the biggest thing you can do for you, is put yourself out there, and educate your community about HIV,even volunteering at your local ASO. Helping others, helps your "self" when "self" is strong and healthy, no disease stops it*
Its the future of Hiv Education, and Resources www.aids2hiv.com      Got Community?

Offline SoSadTooBad

  • Member
  • Posts: 248
Re: Is this all true?????
« Reply #14 on: January 20, 2007, 05:43:16 PM »
egello - how is it going?  by now, you should have been on meds for two days.  any new side effects?  you are DEFINITELY at a point where taking your meds religiously can mean the difference between life and death, so I am really praying you are doing ok.  I got down to a CD4 of 78 before starting meds, so I have a little taste of what you are feeling.  Take your meds and you will do fine - the side effects are far less of a risk to your quantity and quality of life than walking around with a CD4 of 11.

Offline Coffeechick88

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Re: Is this all true?????
« Reply #15 on: January 20, 2007, 05:48:29 PM »

anyhow, i started taking the hiv med today.


I'm glad to hear that--I really was worried.  I will send good wishes your way that this will be well tolerated and you will experience a good rebound.  I remember being there and fortunately most of my fears turned out not to happen and I felt better really soon after that.
Lucas James is here
Born 6-14-08 at 1233 am
8 lbs 14 oz, 22 in long

Offline bear60

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Re: Is this all true?????
« Reply #16 on: January 20, 2007, 05:58:05 PM »
QUOTE Egello:  "Why can't I just keep taking prophylaxis and do nutritional therapy? "
....
It never ceases to amaze me that people actually believe that the so called nutritional therapies are really going to do something about your HIV Tcell counts.  There is no way that nutrition can actually restore a badly damaged immune system.  Why do I know this?  Because my former partner who died in 1995, tried that approach when he was first diagnosed with HIV in 1989.  He  chose macrobiotics and homeopathy.
As he started to loose weight (rapidly)  his homeopathic "doctor", assured him that his body was "cleansing itself of the toxicity". When he was in the hospital with PCP this homeopathic doctor called to schedule his next appointment. (Which was not covered by insurance.)  I told him Paul was in the hospital with PCP and there was just dead silence on the other end of the line.
Poz Bear Type in Philadelphia

Offline egello

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  • cb
Re: Is this all true?????
« Reply #17 on: January 20, 2007, 07:07:38 PM »
thanks everyone for your encouragin words....

yes, today was the second day taking the meds, and the only lingering side effect is tingling sensation on my feet, i am supposing thats some sort of peripherla neuropathy. also, some nauseousness in my stomach which goes away after a couple of hours. i also feel "edgy" for a several hours.

its just so crazy that that i am hiv positive and that i have to be on the med,,, its just the weridest thing in the world. since middle school, we grew up being fearful hiv / aids and seeing them waste away on the tv screen, and now, its me,,, never thought it would happen to me, really and still can't believe it, especially since its something that i can't see it happenening. its also crazy that I have to be on the medication for the rest of my life and also crazy that I almost died from pcp just a month ago,,,, so hard to believe. so, everyone, this really isn't some science fiction that i got somehow trapped in? wish it was....

Reyataz / Norvir / Truvada/ Androgel 5 g / 2 days
1/29/07 14 T, 300 k V, 1.8 %
2/22/07 197 T, 247 V, 6.8 %
3/27/07 164 T, <50 V, 5.4 %
5/28/07 177 T, <50 V, 8.2 %
7/28/07 214 T, <50 V, 9.6 %
10/3/07 380 T, <50 V, 10 % no more Mepron, Famvir

Offline yowsaa

  • Member
  • Posts: 86
Re: Is this all true?????
« Reply #18 on: January 21, 2007, 01:51:45 AM »
THREE CHEERS FOR egello !!!!

Any side effects this early my friend are VERY usually short term and/or the mind playin it up, in my opinion.

Question: Why you or me or any of us ?
Answer: Why Not you or me or any of us.

Last comment. Get better, than get busy living  :)




Offline DanielMark

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  • Posts: 1,475
Re: Is this all true?????
« Reply #19 on: January 21, 2007, 05:45:22 AM »
Egello,

Reading about what's happening with you, it seems to me the anxiety of testing Poz is creating these symptoms, if only in part.

Give it time. It may seem "crazy" right now, but it's not the end of the world. You can still have a good life.

Daniel
« Last Edit: January 21, 2007, 05:47:04 AM by DanielMark »
MEDS: REYATAZ & KIVEXA (SINCE AUG 2008)

MAY 2000 LAB RESULTS: CD4 678
VL STILL UNDETECTABLE

DIAGNOSED IN 1988

Offline poet

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  • Posts: 934
  • Poet living and working in Central Maine
Re: Is this all true?????
« Reply #20 on: January 21, 2007, 04:03:03 PM »
Glad to hear that you are on meds.  Yes, most people do feel- stunned? if that's the right word- to find that what they had heard about or seen in other people suddenly is them.  As the posts here will support, it will gradually make sense and the lifetime of taking meds, which perhaps seems so onerous at the moment, will become something like brushing your teeth in the morning and the evening.  Win
Winthrop Smith has published three collections of poetry: Ghetto: From The First Five; The Weigh-In: Collected Poems; Skin Check: New York Poems.  The last was published in December 2006.  He has a work-in-progress underway titled Starting Positions.

Offline twofires

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    • Artists Farm
Re: Is this all true?????
« Reply #21 on: January 21, 2007, 04:07:33 PM »
its wise to be wary of touching things willy nilly

I prefer shopping at Publix rather than Walmart for food

cuz Publix was first to have sanitary hand wipes stuck to the wall right by the shopping carts

all those hands which steered it, all the todlers who dripped gooeiness all over it....

EEEEWWWW!!!!!!
Who was it wrote; Give any one species too much rope and they'll fuck it up?
-Roger Waters

 


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