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Overstressed
Member

Reged: 02/26/06
Posts: 16
Worried..T-Cells count going down fast!
      #177413 - 02/27/06 02:32 AM

I was tested postive in 2003 and when I went in for my frist T-Cell count and Viral Load I was not sure what to expect..I started @1041 T-Cell and viral load 45,000 and of course I would go in and get my count every 3 months . My T-Cells would be droping so fast and in times it would be up again . There would be times that I would have 510 T-Cell and Viral Load would be unditeted. I feel as if something is not right how could this be happening in such a short time of me being postive. My last lab work I had 488 T-Cells and 46,000 Viral Load I am scared because, I been fighting the fact of taking meds and would of thought it would been a long time befor I took meds.

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Demar
Unregistered

Re: Worried..T-Cells count going down fast! new
      #177419 - 02/27/06 05:31 AM

i tested pos in 2001 with Tcells at 685: it has been steadily dwindling and last year November it was at 280 with viral load abt 10 times higer at 300000. i was really depressed but my doctor said other test results were good so i sld wait till February before i do the control again so we decide if i go on medication
im really avoiding the medication so i dont still have the courage to do the conrol: deicded i would do it in June
i think the decision to take medication or not is a very important one

good luck

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ScotCharles
Legend

Reged: 05/06/05
Posts: 924
Loc: Los Angeles
Re: Worried..T-Cells count going down fast! new
      #177442 - 02/27/06 09:21 AM

I don't know dude, you're cutting it pretty close. You doctor should test you every thirty days with those numbers, if he balks, insist. It is normal medical practice in the US to closely monitor patients with those sort of numbers. Has your CD4/CD8 count inverted? A higher CD8 than CD4 count is a proven signal that your immune system is losing the battle.

I support any decision to hold off on the drugs, but I came down with PCP when my numbers were about at your level. PCP is a sonofabitch that will knock you flat for months after a long spell in hospital with an oxygen tube in your nose.

ScotCharles

--------------------
Life is a river.
Carpe diem.

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ScotCharles
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Reged: 05/06/05
Posts: 924
Loc: Los Angeles
Re: Worried..T-Cells count going down fast! new
      #177445 - 02/27/06 09:29 AM

CD4 counts fluctuate in a broad band, don't sweat it. Some doctors say when your CD4/CD8 ratio inverts, that is you have more CD8 than CD4, you should take drugs. But then again, after I started meds in the 90's my CD8 count went through the roof and my CD4 count continued to drop, but that was before I started on PI's last year. Now the numbers have leveled off, with an ever so slight downward trend that if it continues in the same way, I will likel die of old age before I die of AIDS. I am 51.

Cheers up mate, you have to be strong and have a sense of humour to get through decades of HIV infection. I have had the virus for 21 years and I'm still here.

ScotCharles

--------------------
Life is a river.
Carpe diem.

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AIDS2HIV
Unregistered

Post deleted by Becky new
      #177446 - 02/27/06 09:43 AM



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Demar
Unregistered

Re: Worried..T-Cells count going down fast! new
      #177453 - 02/27/06 09:58 AM

its quite a decision Scott: for the past 7 months my doctor put me on a daily dose of one bactrim tablet and i think maybe she also counts on that as i do.
i mean like it playing some part on my immunity so i dont get sick easily
thats for your words: i just might get tested next month

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ScotCharles
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Reged: 05/06/05
Posts: 924
Loc: Los Angeles
Re: Worried..T-Cells count going down fast! new
      #177455 - 02/27/06 10:13 AM

Amen. Relax and get used to having HIV, it is a long and winding road, with a lot of bumps and thrilling views.

--------------------
Life is a river.
Carpe diem.

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ScotCharles
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Reged: 05/06/05
Posts: 924
Loc: Los Angeles
Re: Worried..T-Cells count going down fast! new
      #177457 - 02/27/06 10:25 AM

With bactrim you have to stay out of the sun or if you do go out smear yourself with SPF 50. Bactrim makes you very sensitive to the sun. I don't take Bactrim as I developed an allergy to sulfa, but when I did take it, I spent no more than 15 minutes in the LA sun and was burned raw. People with HIV should stay out of the sun anyway as the virus for some reason makes us sensitive to sun exposure. Have to admit, I spend hours at the weekend in the sun working in my garden, but then I'm sickly for a few days. Oh well, life is about compromises and I would rather be sick for a few days than miss tending my garden.

Glad to hear you are going to monitor your counts and that you are at least taking Bactrim. Taking the meds is not pleasant and all of them have nasty side effects. Sustiva causes nigtmares, Videx slowly eats away at your pancreas, and PI's slowly destroy your liver. Still all in all it is a lot better than dying in your own shit and vomit in horrible pain like people used to do in the 80's when I was first diagnosed.

Cheers up, mate

ScotCharles

--------------------
Life is a river.
Carpe diem.

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AIDS2HIV
Unregistered

Post deleted by Becky new
      #177470 - 02/27/06 01:38 PM



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still_here
Guardian

Reged: 02/01/06
Posts: 389
Re: Worried..T-Cells count going down fast! new
      #177507 - 02/27/06 05:52 PM

i didn't have the luxury of waiting to go on meds... so i guess i didn't really feel the anxiety of it. i was so scared & afraid i was gonna die in a week that i wanted to start meds. i understood that they slowed the progression of the disease which would allow me to regain some strenght in CD4 #'s. the first 2 weeks were a bitch, next 2 weeks, not so bad. now... just some sour stomachs if i eat ceratin foods or combinations of foods & well, some very URGENT trips to the restroom. all in all, not so bad. i was undetectable within 3 weeks. here it is 4 mos later and VL undetectable CD4 651 (from 280) 38%. next labs 4/10. i'm shootin for atleast a 700-750 for my CD4 this time, and of course VL undetectable!! i've been very good about my meds & staying healthy... even gained 4lbs!! i think that stressing having to take the meds would make the situation worse than it really is.. could make the dreams a little more intense, but i decided to make my dreams more of an acid trip... thought all kinds of crazy things before i went to bed & fell asleep to cartoons. LMAO! in my dreams i really was Queen of Everything! and i have a whole bunch of imaginary friend that i invented in my dreams... they are SUPER fun!!

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Anonymous
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Re: Worried..T-Cells count going down fast! new
      #177525 - 02/27/06 07:49 PM

I do agree with ScotCharles. You should get checked in 30 days. You really don't want your t-cells any lower than what they are now. And with a VL of 300000 you should start drugs.
I never heard of the CD4/CD8 count inverted thingy ScotCharles talks about. Your CD4 is MOST important, regardless of your CD8.

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Survivor
Legend

Reged: 10/30/05
Posts: 3256
Loc: Get off the fence and live again!
Re: Worried..T-Cells count going down fast! new
      #177541 - 02/27/06 09:19 PM

ScottCharles has got a good point.. The % between cd4 and cd8 is one of the defining factors in trends for doctors to make a decision on Meds. Its the trend between visits overtime that the doctor is looking at. He could care less if a cd4 is set at 480 then it jumps or falls the next visit. Same way with VL. Its all over the board with both of these. But your % is what is gong to tell you that you are going to be needing to think about meds sooner or later.

As far as getting ready... DONT MAKE A BIG DEAL about it. The worry prior to meds is the worst. Dont let that happen to you. Just educate yourself. But dont fear whats going to eventually just be another couple pills with your normal multi viti's... I speak as a USA citizen and have access to quality health care..

Hope you do to...

Love

Eric

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ScotCharles
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Reged: 05/06/05
Posts: 924
Loc: Los Angeles
Re: Worried..T-Cells count going down fast! new
      #177550 - 02/27/06 09:51 PM

From UCSF School of Medicine which shows that not only should your doctor monitor your CD4 % but also the ratio of CD4 to CD 8.

"Because CD4 cells are a subset of all T lymphocytes, which are in turn a subset of all white blood cells, variations in CD4 count can occur in response to a variety of variables including concurrent infection, medications, stress, malnutrition, vitamin deficiencies, and normal diurnal variation. Often, these variables affect many subsets of lymphocytes and not exclusively CD4 cells; thus, the percentage of T lymphocytes that are CD4 positive will remain relatively stable. On the contrary, the depletion of T lymphocytes in HIV disease primarily affects CD4 cells, causing a relative CD4 cytopenia and a drop in the CD4 cell percentage. Additionally, an inversion of the normal CD4/CD8 cell ratio, which is usually >1 in non-HIV-infected individuals, may be seen with progressive CD4 cell depletion due to HIV. Thus, the CD4 percent and the CD4/CD8 ratio may help the clinician determine if a change in absolute CD4 count is due to the effects of HIV disease or to some other factor."

Many IDs these days look only at CD4%, and cannot accurately determine if a med regimen is failing or if CD4 is normally fluctuating. You really have to monitor your labs and if your cd4/cd8 ratio changes significantly or if your viral load starts trending up, your med regimen may be failing.

I went through this last year with an idiot doctor who would not see that the med regimen she prescribed for me was not producing the ratios and trends that should be seen in a successful strategy. It took my viral load shooting up to nearly 1/2 million copies and my CD4 count falling by 100 for her to order the drug resistance tests. In the meantime I got a serious prostate infection that granualized my prostate rendering it non-operational, an infection of the cholangial ducts in my liver, brain deterioration, and pancreatic damage.

I have had a high CD8 count since my first blood tests in 1995, with CD8 of around 1800 and CD4 that fluctuated between 380 and 750. Even now with meds my CD4/CD8 ratio is consistently less than 25%, with the result that I have regular drug resistance tests.

I have had HIV since September 1984 and in my opinion, doctors today are horribly trained in HIV/AIDS management. That is unless their practice is limited to HIV/AIDS management. This disease is a lot more than just meds, it also requires a doctor who knows how long term infection and HAART/ART treatment effects the body.

My heart condition, liver damage, brain damage, prostate shutdown, and sun sensitvity are all due in large part to my two decades plus infection and eleven year experience with AIDS meds.

Goodness, I don't mean to sound bitter, but if you trust your doctor to render quality care individualised to your needs, you have to at least know how to read your labs and question your doctor's decisions. Most HMO and public clinic docs are pill pushers in thrall to the drug companies.

Demand quality health care and if you don't get it, be a bitch until you do. You'll live longer.

ScotCharles



--------------------
Life is a river.
Carpe diem.

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Demar
Unregistered

Re: Worried..T-Cells count going down fast! new
      #177578 - 02/28/06 02:24 AM

Actually Scot i live in Africa where the sun can be reallyyyyyyy hot. Luckily for me or sld i say unluckily i have tonsilitis and i easily feel cold so i dont mind the sun so much. Simce i am also a black the sun doesnt affect my skin so much. i just know i have terrible headaches when im out in the sun
what i am not very consistent in taking is a daily does of vitamines.however my doctor says i dont need it so much i eat healthily. thank God i am one of those person in my country wo can actually afford seeing a private doctor and follow up with my money. my insurance company doesnt know my status so i pay individually

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Demar
Unregistered

Re: Worried..T-Cells count going down fast! new
      #177579 - 02/28/06 02:28 AM

the issue here is not refusing to take meds: u just weigh the odds and decide whats best for you at the moment. Especially in a case where the numbers are not so good but you are quite quite healthy!!

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