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Author Topic: Is your cd4 below 200 and....  (Read 4257 times)

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Offline Morton Salt

  • Member
  • Posts: 98
Is your cd4 below 200 and....
« on: August 05, 2006, 02:38:16 AM »
I was wondering if anyone here has a cd4 less than 200 and is not taking any medications yet?  and if so, why not?

~Morton

Offline J.R.E.

  • Member
  • Posts: 7,288
  • Joined Dec-2003 Living positive, since 1985.
Re: Is your cd4 below 200 and....
« Reply #1 on: August 05, 2006, 02:59:20 AM »
Hello Morton,

Back in 2003, I had a t-cell count of 16, and I was not on medications.( never was) I was also at that point about 17 years into HIV infection. I had a t-cell count done in 1999 and it was in the the mid 900 range, with the viral load approximately the same.

Somewhere after that test in 1999, I became too confident,( in my good health at that time) and I basically stopped seeing doctors. I really had believed, That I was not going to get sick !! By the time 2003 rolled around, I had 16 t-cells , viral load over 500,000, and suffered through a 30 pound weight drop over  a period of 10 months. For me the reason, for not starting on meds, was DENIAL !!! It was the worst mistake I had ever made, and I regret it very much.  Of course, knowing what I know now, I would NEVER have allowed that to happen, and I am very fortunate, that I made a come back, and am still around, at least for the time being...

Everything fell apart quite rapidly between 2000 and 2003.... But I am holding my own right now !




Ray
Current Meds ; Viramune, Epzicom, 40mg of simvastatin, 25 mg of Hydrochlorothiazide.
Metoprolol tartrate 25mg



http://forums.poz.com/index.php?topic=40802.0

http://forums.poz.com/index.php?topic=45159.0

http://forums.poz.com/index.php?topic=39722.msg495621;topicseen#msg495621

http://forums.poz.com/index.php?topic=46806.0

http://forums.poz.com/index.php?topic=39414.msg491701#msg491701


Diagnosed positive in 1985,.. In October of 2003, My t-cell count was 16, Viral load was over 500,000, Percentage at that time was 5%. I started on  HAART on October 24th, 2003.

 As of 12/10/14,  t-cells are at 350,  Previous 8/25/14--- 402/ Viral load remains <40

 Current % is at 13% / Previous 8/25/14 11%

  
 63 years young.

Offline allopathicholistic

  • Member
  • Posts: 3,258
Re: Is your cd4 below 200 and....
« Reply #2 on: August 05, 2006, 02:25:25 PM »
Morton: I am not under 200 but I just wanna say Ray's story and my story have tons of parallels. The biggest similarity was the dangerously stupid DENIAL thing that I held onto for years i.e. viewing my health as stellar, not knowing or caring about my viral load and tcells. I nearly died twice last year because of this ignorance and foolish pride which I used to mask my fear of starting meds; fear of diarrhea, lipo, wasting, "looking sick". All these fears I blew out of proportion. Mountains from molehills as the saying goes...

For anyone out there reading whos afraid: Don't let fear control you

Alex
« Last Edit: August 06, 2006, 09:44:05 PM by allopathicholistic »

Offline blondbeauty

  • Member
  • Posts: 1,785
Re: Is your cd4 below 200 and....
« Reply #3 on: August 05, 2006, 02:40:38 PM »
My friend Felix had his last blood test last november. He had 180 cd4. He lied to me and said he tested again and was above 400 cd4. The other day he forgot what he said to me and told me one blood test a year was enough for him. But he looks healthy...
The only member in these forums approved by WINBA: World International Nail and Beauty Association.
Epstein Barr +; CMV +; Toxoplasmosis +; HIV-1 +.
Counts when starting treatment:
V.L.:80.200 copies. CD4: 25%=503
Started Sustiva-Truvada 14/August/2006
Last V.L.count (Oct 2013): Undetectable
Last CD4 count (OCT 2013): 52%= 933

Offline aztecan

  • Member
  • Posts: 5,430
  • 29 years positive, 57 years a pain in the butt
Re: Is your cd4 below 200 and....
« Reply #4 on: August 06, 2006, 12:32:23 PM »
Hey Mort,

Reading Ray and Alex's posts are a perfect example of why people should:

1) Monitor their viral loads/CD4s.

2) Begin treatment when appropriate (CD4 350 or below, etc.)

I have a friend who lived in a state of denial for about 10 years. He was fine, he said, and didn't want the bother of blood tests.

One day at work, he became ill. In his case, work was on a ship in the middle of the Gulf of Mexico. Well, he didn't get any better. Instead, he began having uncontrollable diarrhea, fever, etc.

Within the span of a few weeks, he dropped from about 140 pounds to 70 pounds, was airlifted to the mainland where he spent three weeks in a less than stellar hospital on the Gulf Coast (how do people survive the South?) and now is bedridden at home, under the care of his mother.

The rule of thumb is once the CD4s drop below 200, a person should be on prophylaxes for oppportunistic infections, beginning with Bactrim or an equivalent for those who can't tolerate Sulfa drugs.

The lower the CD4, the more drugs are needed to fend of more OIs. Once the CD4 drops below 50, the person if basically fair game for any OI out there.

I have known people who lived with very low CD4s for a quite a while. But when they are at 50 or below, it isn't a question of if the person will contract an OI, it is when.

I am not trying to be an alarmist. I am simply being realistic. I have seen it way too often, over and over again.

So, a person may "look fine" for a while with a low CD4 count. They may function well, continue to work, etc. But, eventually, something - or a bunch of somethings - will rear their ugly heads.

The question I would ask is, with the advancements in treatment and the ease of new regimens, why would anyone wait until they were at such low levels?

HUGS,

Mark
"May your life preach more loudly than your lips."
~ William Ellery Channing (Unitarian Minister)

Offline elena

  • Member
  • Posts: 7
Re: Is your cd4 below 200 and....
« Reply #5 on: August 06, 2006, 08:57:51 PM »
I found out that I'm hiv positive in may 1996.,but now I know that I'm positive since '93(I thought a lot about my dangerous way of life between hiv negative test in '93 and hiv positive test in '96)...
I didn't start with meds immediately because my cd4 was 770(may '96),next was 1007(december '96)...But on third test(february '97) my cd4 was 352 and I started to take meds...Few months later(december '97) cd4 was 988...And it was ok for a long time(years),once I made pause of about 6 months with meds...But I started again when my cd4 was 213(july '03)-and this was less cd4 I had...but I didn't feel bad,I felt good,like before when my cd4 was ok...
But,one friend of mine didn't take meds untill he had tuberculosis of liver even his cd4 was almost 0(?!),he just didn't believe in meds,he took some herbal "meds" and felt very good almost 10 years-untill tbc when he started to take Trizivir...
~ Homo sum:humani nihil a me alienum puto ~

Offline gemini20

  • Member
  • Posts: 262
Re: Is your cd4 below 200 and....
« Reply #6 on: August 07, 2006, 07:16:19 AM »
My last count in May was 222 and I expect the next results at the end of August to be under 200. I have been off all meds since October 2005 and don't have any immediate plans to go back onto treatment, regardless of my numbers.

I am not in denial about the potential reality that a low CD4 count may bring, just making a conscious choice about how to live my life with HIV. I have not ruled out going back onto treatment completely but it will take much lower numbers (e.g. less than 100) or getting ill for me to consider it.

My experience over 15 years with HIV is that on the two times I have been ill it was either directly related to the treatment - i.e. allergic reaction to Abacavir or due to a particularly stressful episode in my life. Cut out the stress and the treatment and I have been perfectly well and healthy so I know what works for me but everyone has to make their own choices.

Emma
Diagnosed 11th September 1991
Current CD4 count 484 (26%); viral load undetectable (December 2011).
Restarting boosted Prezista 08/04/11

Offline bobik

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  • Posts: 315
    • My worksite
Re: Is your cd4 below 200 and....
« Reply #7 on: August 08, 2006, 11:44:05 AM »
Hey Morton,

what is your story?

Coen
Coen Honig at Facebook

Offline Morton Salt

  • Member
  • Posts: 98
Re: Is your cd4 below 200 and....
« Reply #8 on: August 08, 2006, 11:16:10 PM »

Hey everyone.  Thanks for responding to my question.  My story Coen is this.  I know ive put this out a couple times before, but its just hard making decisions regarding meds/no meds/when meds/why meds/ ect.

I was diagnosed in Feb 06 and my numbers to this date are as follows:
2/20/06  CD4 163---%13.5----VL 464---WBC 3.9
2/27/06  CD4 241---%14.3----VL 581---WBC N/A
3/29/06  CD4 189---%13.8----VL N/A---WBC N/A
6/13/06  CD4 153---%11.2----VL 835---WBC 3.7
8/06/06   WAITING FOR RESULTS
NO MEDS

I dont ever remember seroconverting.
Im never sick.

I was put on Bactrim when i tested poz in 2/13/06.

Since then ive been taking chinese herbs, and a shitload of vitamins,
b1
b6
vit c
b 12
cq10
multi
acidopholis
selenium
nac 600
paleo greens
50 drops a day hydrogen peroxide 35% food grade
vit e
b complex
GOLDEN FLOWER LIVER C FORMULA
GOLDEN FLOWER ASTRAGULUS A LIGUSTRUM FORMULA
VIOLA CLEAR FIRE FORMULA

with the amount of vitamins and herbs, im at 44 pills a day. 

I also have Hep c and my labs are showing an elevated ALT-256/AST-207.

I also started pill splitting my Bactrim 2 months ago, and last month stopped taking it completely.  Not for any other reason other than i worry about my liver and do not want to take any medication at all that will hurt my liver than it already is.

I told my doc i stopped the Bactrim and she had a cow. She was pissed that i did that without letting her know. She also said that all these vitamins are working my liver too hard.  She said one Centrum a day will do just fine.

Before i left the Doc's office, i promised i would get on Bactrim again and stop the high numbers of pills a day.  So, thats what i did.

Today i await my latest labs.

I am going on the advice of my doctor and stopped all the vitamins except:
VIT C
MULTI
PALEO GREENS
ACIDOPHOLIS

I am also enrolled in The Dr Bruce Walker Ellite controllers study.  3 days ago i gave 100cc of my red nectar to the cause.   My VL is Low however my cd4s are low as well. 

I was just curious as to who is sitting with cd4 less than 200, how do they feel, and what are they doing or not doing. 

I always feel great, always have(knock on wood).

My doctor Spoke with Bruce Walker while she was in Boston couple weeks back, and he is suggesting as well that i should be on HIV medication at this point.  Bruce is pretty much at the top of the chain when it comes to HIV research here in the U.S and i still ask myself why i am not on Meds yet????   Its because i feel just fuckin fine.  It doesnt hurt yet.  Im waiting for this fucking virus to hurt me before i take meds.  Maybe i can go ten years before meds, maybe 2. How about 1.  1 still works for me.....lol

Thats where my heads at Coen.  It sounds like im running around with my head cut off, but im really not.  It just seems to look that way as i see it on paper.....

I was in a successful band for about 5 years back in 96 to 01 and was always drunk/high and always had un safe sex with as many girls as possible.

Im a straight guy who got sober 4 years ago, met my wife two years ago, and thought i had made it out alive and well.

Well, my wife and i just got health insurance in december 05(holy crap-what timing) and i decide to go to the doctor for a check up.  I explained i was having pains in my ches for a couple years, and they were brought on after a pizza, or fried foods.  I told her i thought i was becomming lactose intollerent.  She said i need to have an ultra sound on my gall bladder.  turns out i had Gall stones.  I had my gall bladder removed and about 2 weeks later the GI doctor calls me at home and informs me i tested positive for HIV.  wHAT THE FUCK??????????     I didnt even know i was tested????    No one told me shit...........  oK, IM GETTING SIDE TRACKED NOW........

Ok, so Coen, thats my story.................

Bottom line here is im still unsure what to do...   Meds/no meds/   yada yada yada.....

I dont like thinking about this crap.   Im tired of waiting for the axe to come down.....Im just tired of worrying bro...its draining................

Thanks again all of you for taking the time to write your thoughts in here.

~Morton Salt

"IT WAS AS THOUGH ID BEEN SPIT HERE, SETTLED IN, INTO THE POCKET, IN SOME ROCKY SOCKET, OFF THE COAST OF FRANCE"

Offline Morton Salt

  • Member
  • Posts: 98
Re: Is your cd4 below 200 and....
« Reply #9 on: August 09, 2006, 04:35:03 PM »
So,,,,

got the results today of my latest labs..

VL 1420    CD4 142

WHAT TO DO...WHAT TO DO.............

Offline aztecan

  • Member
  • Posts: 5,430
  • 29 years positive, 57 years a pain in the butt
Re: Is your cd4 below 200 and....
« Reply #10 on: August 09, 2006, 11:45:59 PM »
Hey Mort,

You know my feelings on subject, so I won't belabor them. However, I will add that starting treatment is a committment - and one that shouldn't be taken lightly.

If you feel you aren't ready to commit, it would do more harm than good to start, stop, start, stop, etc.

So, you have to look into the mirror and see what the guy there has to say about all this.

OK, one more plug. Were it me, I would start post haste, if only because I have seen what happens when the hammer falls.

But the decision is all yours, young man.

HUGS,

Mark
"May your life preach more loudly than your lips."
~ William Ellery Channing (Unitarian Minister)

Offline Miss Philicia

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  • Posts: 24,522
  • celebrity poster, faker & poser
Re: Is your cd4 below 200 and....
« Reply #11 on: August 09, 2006, 11:55:03 PM »
Bruce Walker or not I think you'd be hard pressed to find any doctor who would not advise you to start on meds.
"Iíve slept with enough men to know that Iím not gay"

Offline RobT

  • Member
  • Posts: 319
Re: Is your cd4 below 200 and....
« Reply #12 on: August 10, 2006, 01:10:28 AM »
Mort-
I was put on meds when I had shingles and my CD4's sank to 181. I kept on asking for meds, which lead me to seeing a therapist cuz i was told that I was 'overly anxious'. I knew that I neded to attack this virus head on instead of my 1st mths continually being tested. I got my diagnosis last yr and was puit on meds last November. When my doc knew how sick and uncomfrontable I was, that is when she said that I needed to b put on meds. She kinda said that it was not the end all b all, but I figured I shud get a running start.

RobT

9/27/2005-1st test results
Viral Load >1,000,000
CD4 204
CD4%age 18
CD4/CD8 ratio .23
11/24/2005- Sustiva/Truvada
04/18/2006
Viral Load 140
CD4 402
CD4%age .21
CD4/CD8 ratio .39
06/27/2006
Viral Load 42
CD4 409
CD4%age .21
08/01/2006
Viral load- undetectable
CD4 493
CD4%age .33


Current meds: Atripla
VL: undetectable
CD4: 630

Offline lydgate

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  • Posts: 1,022
  • Virgin, can't drive
Re: Is your cd4 below 200 and....
« Reply #13 on: August 10, 2006, 02:18:36 AM »
You're feeling fuckin fine  -- now. Do you really want to wait till you don't feel fuckin fine, till you get shingles or PCP or CMV or whatever? Might not happen for a while but it might happen pretty suddenly. If it sounds like I'm trying to scare you a little, I am. Especially since the trend of your CD4s, both absolute and percentage, is downwards. And the HCV co-infection. See this post about a very large study (over 22,000 people studied) and the recommendation about when to start treatment:

http://forums.poz.com/index.php?topic=2640.0

Jay



« Last Edit: August 10, 2006, 02:21:40 AM by lydgate »
Her finely-touched spirit had still its fine issues, though they were not widely visible. Her full nature, like that river of which Cyrus broke the strength, spent itself in channels which had no great name on the earth. But the effect of her being on those around her was incalculably diffusive: for the growing good of the world is partly dependent on unhistoric acts; and that things are not so ill with you and me as they might have been, is half owing to the number who lived faithfully a hidden life, and rest in unvisited tombs.

George Eliot, Middlemarch, final paragraph

Offline sfca415

  • Member
  • Posts: 20
  • love this place
Re: Is your cd4 below 200 and....
« Reply #14 on: August 10, 2006, 02:58:40 AM »
When it rains, it pours? 

Speaking of that, thanks for pouring out your thoughts on this struggle and asking for help.  It's a good sign.  You were diagnosed less than six months ago, and you're faced with a decision that many people don't have to make so soon -- often people have years of living with HIV and not taking meds before their numbers dip to the point where they'll start.  There is a lot of information to digest, and choices to make, so it's understandable that you might feel hesitant to start.

You may feel fine and look great and, in fact, while your immune system is undergoing some serious challenges.  One reason we get these tests done regularly is that we can't rely on look and feel to tell when we're doing badly.

Guidelines for "when to start" have changed over the years.  One reason many HIV docs start a little earlier (rather than taking the wait-and-see attitude) is that we've seen people who start at higher numbers have better long-term success with their immune function, compared to those who wait until they have an AIDS diagnosis.

You may have read this, but it's worth re-reading.  It discusses that starting treatment at any number under 350 is no longer considered "early."  The current guidelines are to treat patients under 200, and to offer treatment to those between 200 and 350.

http://www.aidsmeds.org/lessons/WhenToStart1.htm

Best wishes with this decision.  Please let us know how you're doing.

Rob

cd4+ 617 30% undetec - Jul06
cd4+ 221 17% 32K - Dec01
cd4+ 640 41% 5K - Feb96
current meds: Reyataz+Norvir, Viread, Epzicom, Valtrex, Wellbutrin
+ 1992, first meds 2002: Viramune (nvp), Zerit (d4t), Epivir (3tc) -- (m184v mutation & resistant to non-nukes, so no Atripla)

Offline allopathicholistic

  • Member
  • Posts: 3,258
Re: Is your cd4 below 200 and....
« Reply #15 on: August 10, 2006, 08:36:39 AM »
You're feeling fuckin fine  -- now. Do you really want to wait till you don't feel fuckin fine, till you get shingles or PCP or CMV or whatever? Might not happen for a while but it might happen pretty suddenly. If it sounds like I'm trying to scare you a little, I am. Especially since the trend of your CD4s, both absolute and percentage, is downwards. And the HCV co-infection.

HI MORTON: Let me scare you even more and share my own story of stupidity. I had no OI's ever so of course I was like Lah-dee-dah I'm feeling GREAT ...

then I nearly collapsed and died twice in August 2005, for no obvious reason, **not one OI in sight!**. I hope you see my point. The ER report stated "unexplained weakness" No OI's were stated on the report. Fast forward one year and I can still say I've never had one OI in my life but my point is that little fact does not change HIV's ultimate goal which is to destroy you.

In my case, HIV said: Y'know what, this motherf*k*r (meaning me) is deluded and thinks he's invincible, I'm gonna hit his ass like a ton of bricks!!!!!!!! And that's what the weakness was like, literally, a ton of bricks. I was able to fend it off the first time and stupid me STILL took no sensible medical action. Second time around (6 days after) I would have died had an ambulance not been parked in front of where I was about to die. I felt God was speaking to me directly saying: Good morning Alex. AIDS kills. Any questions?

My point is, books, webpages, words can only go so far in generalizing the "horror potential" of HIV/AIDS ... AIDS in real life is 10,000X more sinister and devastating

Love and best wishes,
Alex
« Last Edit: August 10, 2006, 08:57:16 AM by allopathicholistic »

Offline Morton Salt

  • Member
  • Posts: 98
Re: Is your cd4 below 200 and....
« Reply #16 on: August 10, 2006, 02:20:57 PM »
I made up my mind today.  Dont really know why it was today of all days.

I guess i feel i will not benefit by waiting any longer.   

I E Mailed my ID DOC and told her i am ready for meds.

Looks like im gonna get this ball rollin.............ADAP is already in place, soi guess ill wait to here what my doc has planned next

~Morton Salt


"COURAGE! It couldnt come at a worse time"

Offline appleboy

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  • Just me!
Re: Is your cd4 below 200 and....
« Reply #17 on: August 10, 2006, 06:11:31 PM »
We are all here for you Morton!  Chin up and laugh lots!
Hugs
AppleBoy
If you are walking down the street and your pants drop to your ankles bend over pick them up and keep on walking!
My Blog

Offline Jeffreyj

  • Member
  • Posts: 1,403
Re: Is your cd4 below 200 and....
« Reply #18 on: August 11, 2006, 05:12:57 AM »
Way to go Mort! You are doing the right thing. We are here for you man. Time to start kickin ass!!!
Positive since 1985

 


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