POZ Community Forums
Main Forums => Living With HIV => Topic started by: zephyr on June 01, 2006, 07:36:49 pm
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Hi R, and everyone,
Just received a call from UC Davis out here in CA...I donated blood again to their LTNP Studies last week, and I'm SHOCKED at what they've reported back with.
I have to qualify this thread by saying I've never, in my 14 years of tracking (or being tracked) my numbers, have I ever been SO BLOWN AWAY...(I'm literally shaking right now!!)
Ok, here goes:
CD4's 2228
CD8's 978
Ratio at 2.4
Percentage at 50%
What is going on with me? In April, the NIH registered CD4's 1488, and told me that they do not like to see numbers over 2000.
I need some input from somebody, please, this is actually getting SCARY.
HELP!!
Zephyr
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In April, the NIH registered CD4's 1488, and told me that they do not like to see numbers over 2000.
:o
did they give you a reason?
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Allo, thanks...
Frankly, I don't remember. We were looking through consent forms, she talked real fast, and I guess it just didn't register in my brain.
That's why I kinda want to talk to R. (HIVworker).
It just feels like I'm entering a whole new ball game, I don't know why.
Zephie
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Quick question. Have you ever tested for HTLV I or had your CD4 cells tested for leukemia. 2,200 is very high. While it is unlikely, given your good health, that you have either of these conditions, it should have been ruled out. High CD4 counts can manifest like that.
I'll think on it some more....
R
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R, thanks....
Let me pull out those lab records, I'll be back to you shortly.
Gosh, am I glad you are on-line right now!!!
Zephie
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R,
I cannot find any reference anywhere indicating that a test for HTLV I or II were done. It would have been a special order from my doctor, right?
Or, would it show up somewhere else on the standard labs, that perhaps I'm not seeing? (Of course, I realize that different labs have different formats...) But, maybe I'm missing something...
Would the presence of advanced peridontal disease be creating this high number of CD4's, cause I am dealing with that at the moment.
(Just providing more info to you...)
The Research Nurse indicated that her lab techs were 'concerned' over these elevated results, but no specific was mentioned.
Thanks for your help!
Zeph
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I just did a search specifically omitting "HIV"---and being non-clinical I can't make heads or tails of the mumbo-jumbo...sorry for the cliches but this is one of the weirdest things I've ever heard!
please keep us posted, honey...I am thinking of you and my face is starting to hurt!
Much love and peace,
creighton
p.s. you're in northern CA...I prescribe a big glass of red wine to stop the freaky feelings...I am pouring one now...
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Creighton, honey...
What a terrific suggestion! Why, I'm going to walk up the block right now and buy some, it's exactly what I need!!
Still having fun with your new system??? I'll bet you love it!
Love,
Zephie :-*
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Zephyr you are a walking talking CD4 factory! I'd try to get too worried about these results if you can, i've always been told by my doctor about margin for error on testing maybe this was just a freak result?
Chris
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yes it's got to be an error...wine tells me so.
and yes I love this thing, keyboard is so freakin' small though!
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Hi Zeph,
I do agree that the numbers are unusually high, but then again hun, u have to remember that you and the other LTNPs are a medical mystery. My guess is that if it was leukaemia, you and the doctors would already know about it. I'm surprised they didn't tell you to come back so they can do another blood draw because numbers tend to be dynamic, changing as often as a day. Leukocytosis is my guess so that's why if I was the physician, I would have asked you to come back for another blood draw to see if the numbers changed. However, if they haven't called you back, maybe they don't think it's much to be concerned about. I have my 1st lecture on blood and blood disorders I can email to you (it's on PPT). As for the NIH CD4 stipulation, I know Frank personally (Dr. Frank Maldarelli leads the majority of the clinical trials and studies at NIAID) and he'll never leave you high and dry. Worst case scenario, he'll put you in a study especially for special people like you. Aren't you lucky. See you in 2 weeks. :-*
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Terpie....so glad to see you on-line, honey!!
Leukocytosis??? Please, educate me, if you'd be so kind. And, I do not know what PPT stands for, could you elucidate??
I didn't get upset at HIVworker's reference to Leukemia, I seriously doubt that I have it. I've been scrutinized so closely lately, that someone would have raised that alarm before now.
My life just seems to be racheted to a very high level at the moment, and it probably shouldn't surprise me that I reflect these numbers...
I'm feeling particularly strong, personally, and with the recent decisions to disclose publicly (newspaper interview next week), I have a strong sense of freedom going on right now.
Terp, I'd love an intro to Dr. Maldarelli this next trip, I'll have to ask to meet him. You know, this will be the visit that defines my entry into a particular study....they have not 'enrolled' me as of yet in one.
I am counting down the days, it's 13 now......can't wait to see you, my friend, and catch up on your news.
Love,
Zephyr
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Hi hun,
Of course. Here's a direct quote from my PPT (powerpoint presentation):
Leukocytosis-abnormal WBC count usually due to temporary infection from bacteria or virus. Everyone who has a cold, the flu, etc. will have this temporary condition where their white blood cell counts sky rockets in response to an infection. My guess is that with your busy schedule and fame (that reminds me, I must have your autograph), you may have become stressed physically and emotionally, which can make you vulnerable and your body can respond by churning out extra WBCs. As for meeting Frank, you'll definitely meet him sometime -most likely when you're placed in a study/clinical trial. He's a very busy man and I must say that in the last 2 years, I've only met him 3 times -twice to ask me to participate in a clinical trial and once to speak to me casually about doing research after I graduate. Yep, 13 days and counting. This time, I'll make sure you'll get an image of the Mormon Temple...but in case you don't, here are some image links:
http://www.ldschurchtemples.com/images/wallpaper/daylight/washington.jpg (http://www.ldschurchtemples.com/images/wallpaper/daylight/washington.jpg)
http://www.lofthouse.com/design/photo/temple.html (http://www.lofthouse.com/design/photo/temple.html)
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OMG!! I remember driving by that temple? tabernachle? several times in the early eighties when my dad lived briefly in Rockville...it reminded me of something out of Flash Gordon which was popular at the time
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Yes, it is quite a sight especially at night because as cars zoom by on the busy beltway, it makes it seem like the temple is floating in air. Also, there's a light green glow at night, reminiscent of the castle in the Wizard of Oz. At some point, there was grafitti spray painted on the highway bridge immediately before the view of the temple and guess what it read? It read "Die Dorothey" hehe. It was later painted over by a darker green paint, but you can still see the message if you look carefully and quickly enough when driving.
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Minh, my Maryland Angel....
How is it that in one brief visit, you have come to know me so well? How wonderful of you to remember our intial drive past that beautiful Mormon Temple in the early dark of night, and my attempts to digitally photo it? How did you know that it would take me there, and calm me, in this tempest wave? Bless you, brother, one- thousand blessings and thanks.
Those tall brilliant spires inspire me to calm. I am like a star caught in a sun-burst, and I don't want to leave my earthly connection. This is how I'm feeling right now, as if I should be floating off the floor. I need your understanding of the virology, your experience, and your wisdom.
It is not fame that I seek, yet it just feels like there is some power that is catapaulting me into realms unknown, and I am grasping, with my un-educated mind, for some type of explanation. Maybe I'm growing impatient, like my brother Paul, we seek some indication, some explanation, some reasoning, after months and years of waiting, for some kind of answer.
Forgive me, all, as I think out loud about these events, it is merely an indication of how safe and available my forums family are to me.
You see, we don't necessarily need the answers for ourselves, as much as we want them for all of you. (I'm crying now.) The pressure I feel is that I want to hurry up the research, because I'm concerned about those we may lose. I am accepting the challange to be a part of the REMEDY, and my Aries impatience is surfacing.
I have to break here, for the moment.
Thank you Minh..........
Zephyr
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You say: Would the presence of advanced peridontal disease be creating this high number of CD4's, cause I am dealing with that at the moment.
I believe that's a definite possibility... especially given that you seem to have a perfectly robust immune system. You may have multiple abscesses spewing bacteria through your gums. Your immune system may just be rev'd up trying to do battle with it.
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Hun, I strongly believe that each and everyone of us was put on this Earth for a reason and to help others. You were definitely put on this Earth to save lives (among other things) because I know you (as well as the other LTNPs) hold the key to save so many lives. Like Moses who led his people to salvation, you too will do the same. As for the fame, I know you don't seek it...but fame seeks you -and for good reason. I think the fame will be a positive influence because it will help validate and increase public awareness, stabilize and hopefully decrease public fear, and gives many of us continued hope for a cure someday.
Your reference to me as an "angel" made me realize that I had told you that I would get a set of angel wings tattooed on my back someday, so I guess we know each other quite well ;) Also, did you know that one of the best matches for Aries is Aquarius? The fire of Aries is fed by the air of Aquarius, making it burn brighter :-*
Yes, I agree Mitch...periodontal disease is a definite possibility too.
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Bloody thunderstorms. I was in the middle of modifying my reply when my internet was k'o'd. They wouldn't check your CD4 cells for cancer - that was misleading.
Given that your CD4 count is so high, it might take a repeat draw somewhere else to confirm that. Also HTLV would be a specific test and it would be noted as such.
Just as I would say to someone with a low CD4 count, I wouldn't take too much notice of a high reading. 2,200 is very high and could indicate some response to something. If it is high for a while then they might want to have a look at the usual suspects to rule them out. HTLV can infect CD4 and CD8 cells but only transforms CD4 ones. Therefore one symptom can be an elevated CD4 count and in someone with a persistent elevated CD4 count, this would be something to rule out. I'm certainly not trying to scare you nor am I making a medical diagnosis - I just want to be sure that you are asking your doctors some questions.
Other things that change it include whipping out your spleen and a re-migration of the cells to infected areas - so Mitch could be onto something.
The bottom line is that there is little to worry about with a single count like this, and if it is elevated again the doctors would move quickly to rule out the unlikely things I have listed. Again, they remain unlikely because you are not unwell as I previously said.
Keep us informed!
R
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Hi Zephyr,
Wow, those numbers are impressive. I don't think i'd ever had those numbers even when I was negative. In any case, I hope those numbers are not errors, but are your actual counts. Think you can spare some of those CD4's to me? =) Please keep us updated.
Justin
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Very few people have CD4 numbers that high - even people without HIV. However, they have been heard of during HIV infection.
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Dearest Zephy
I can understand your worry over this..but so far you have shown nothing but courage and strength, don't let it fail you now, accepting there is a reason for this is easy..finding out what the reason is can be a little harder, but please don't stress yourself over this...Please keep us informed.
I think Mitch is right, the Peridontal disease could be harbouring a lot of bacteria that hasn't been detected yet.
Thinking of you and sending you lots of hugs from NZ
Jan :-*
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Maybe your HIV is confused and is doing the opposite of what it normally does! :P ;) :D
<<HUG>>
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Hi Zephyr,
Do you happen to have the total white blood cell count in the results given to you? Like Minh said, if this is elevated, such as resulting from an acute infection (including dental infections), the CD4 count may become falsely elevated by the elevation in white blood cell count. This is because the CD4 count is estimated from the Total White Blood Cell Count, the % of the white cell count which are lymphocytes, and the % of the lymphocytes which are CD4 cells. At any rate, perhaps a repeat test in a couple of weeks would be in order. Keep us posted and good luck with your trip.
Gerry
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What was the conclusion to Zephyr astonishing lab results. I haven't heard anyone ever reach so high CD4 cells.
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You have retarded HIV.... Good luck Zephy and if you want you can fed ex me the xtra cd4's. The least I can do is take them off your hands!!!!
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Zephyr,
What was your white count (WBC)?. Normal? Elevated? WAY elevated? With a CD4 number like that, and a percent of 50, I would suspect the WBC is high, indicating some sort of infection.
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Hey Z,
WOW! What is the secret?
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Hey Zephyr,
I'm super curious about your counts. I had not considered that they could be too high before -- made me think and I have been trying to do some web research to see what it means. Please keep us informed.
I got my labs back two weeks ago. My CD4 went from 850 when first diagnosed in October to 1490 just three months later. I just assumed it was a good thing ... but now I am wondering why and where the trends will go.
Please stay in touch !!
Sara