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Antiretroviral Trial

Daffodil

Senior Member
Messages
5,875
thanks, everyone! so turns out the bloodwork i had during the thick blood episode showed high RDW! (width of red blood cells). of course, i have been googling and it says it can mean all kinds of things, inlcuding lymphoma (for which i have already had a borderline result), leukemia (we have a leumemia virus dont we??), and anemia. turns out vistide can cause anemia too.

tomorrow i get the t-cell gene rearrangement test. i emailed my doc about testing for anemia and whatever else i can get tested for in canada, which isn't much. i think i will make a quick appt. with the new york doctor..he does in-depth testing for things.

money is now pouring out like water. not sure how long i can go on this way with all the treatments and testing.

no matter how sick i have been in the past, my blood has never been thick like this before..even when i was severely anemic. i am trying not to think the worse...but you know i am horrible at that.

its been 2 months and this vistide isnt doing anything.

but my NK cells did jump up on the arv's....thats gotta mean something !?? i am getting them retested tomorrow too.

thanks for reading
xoxox
 

undcvr

Senior Member
Messages
822
Location
NYC
Vistide can cause low white or red blood count. Most AVs can except the newer ones. Being on high doses of active folate formyl or methyl may help allow the DNA synthesis pathway to keep on going though if Vistide is blocking it.

B9 and B12 maybe helpful.
 

Daffodil

Senior Member
Messages
5,875
thanks und. sorry you are feeling bad charles. i hate waiting for blood test results.

the vistide has done nothing and its been 2 months of hell. not even a dent. cant figure anything out.
 

Charles555nc

Senior Member
Messages
572
So,

Instead of TEST CODE 34184x and quest diagnostics as the blood draw and nicol institute as the testing facility

Its now TEST CODE 20595, still quest labs as the blood draw and FOCUS LABS, BALTIMORE as the testing facility


I didnt quite understand your private message... did u mean to say your last labs from nichol institute turned out wrong the last time u sent them there?

http://www.nicholsinstitute.com/TestDetail.aspx?TestID=2742

"labs should be received by focus within 24 hours"....so nicols website says sent to it to focus, but still doesnt explain why the code isnt the same

Sigh.


-Charles
 

Daffodil

Senior Member
Messages
5,875
charles...yes..you got it right..its FOCUS and not nichols. apparently, nichols never changed their website and thats why everything keeps getting mixed up. they do it only at FOCUS in baltimore, test code 20595.

since i thought it was nichols, i told them to send my blood to nichols and so mine is gonna be screwed up again lol. now i'll have to keep calling for weeks for a refund..and they will do a NK cell lymphocyte enumeration or some test like that, which comes up when they punch in the nichols test code LOL. i cannot believe i went through this in august and now again! in august, it was a 3rd party lab that sent my blood and my docs office used the wrong code.!

stange that a world class lab wouldnt clean up their websites.

i am just gonna have the NK cell function test at VIP/UNVEX.

in the afternoon today, i started to feel better. i didnt sleep through the entire day sick, as i usually do the day after i return from my infusion trip. i was pittering around the house all day. interesting.

one thing that has me concerned is the RDW, which came back abrnormal again. before the infusion, it was 16.2 and after, it was 16.4 this represents the width of the red blood cells. i am negative for b12 deficiency and anemia. hope its just a side effect of the med. i know a few women who had to stop vistide after a couple of months because of bloodwork and i really hope i dont have to.

i emailed a prominent neurologist who says that he does not think my cervical disc issue is causing the brain fog. all of my other docs agree.

xoxo
 

Charles555nc

Senior Member
Messages
572
No way your getting away with such a small post, Daffodil.

TALK :D

Getting that nkc test and then hearing back about Nexavir tomorrow morning
 

Charles555nc

Senior Member
Messages
572
Had a rough 3 days, trouble organizing my thoughts to a horrific degree and trouble sleeping. Even the chelation stuff/b vitamins werent helping much, remembered tindimax helped and restarted it again and had a huge pain in my head subside over an hour this morning and now feeling much better.
 

Charles555nc

Senior Member
Messages
572
Just had the natural killer cell panel done at Quest Labs, the code, according to them, is 34184x and goes to the focus lab in california.

Maybe the other code is for labcorp or something
 

Daffodil

Senior Member
Messages
5,875
sushi.....i didnt know peterson was involved in a cmx001 trial. wow. do you know this for sure?

charles....see this is the problem....everyone you talk to at quest will say something different. as long as you write down the full name of the test and make sure the blood goes to FOCUS LABS IN BALTIMORE, it should be OK. but according to the website, the focus test code is 20595. 34184x is a nichols lab code and i dont even think they do it anymore...if you tell quest its 34184X, they will do the lymphocyte enumeration test...trust me, this has happened to me now twice! if your blood went to california, maybe it went to nichols.

you need to make a call tomorrow to customer service and make sure! lymphocyte enumeration is helpful too but i dont think it tests lytic activity of nk cells
 

Daffodil

Senior Member
Messages
5,875
i'm feeling bad again and my head feels like its caving in again. its awful. i am on my period which also makes it worse.

just hope the tests give me some clues. its so bad today!
 

Daffodil

Senior Member
Messages
5,875
charles..i looked up 34184x again....and it says focus labs in the test info but says nichols institute at the top. i have no idea whats going on. maybe they told me the wrong info. they told me baltimore. wtf
 

Charles555nc

Senior Member
Messages
572
I like the labcorp ppl much more than the quest ppl. Quest ppl seem really bad at their job, the yokel doing my blood draw was humming the whole time drawing my blood and had to restick me several times. Maybe I'll swing by labcorp tomorrow and check for the code of a natural killer cell panel.

If it turns out to be a lymphacyte panel I will be EXTREMELY pissed.

Edit: From a website:

"Postscript: If you would like your health care provider to order the
CD57 NK test for you, your blood sample needs to be drawn into an
EDTA tube (lavender top) on Monday through Thursday and sent
immediately to either LabCorp in Burlington, NC, or Clinical
Pathology Laboratories (CPL) in Austin, TX. LabCorp and CPL are the
only two labs that perform this test properly. Quest does NOT. The
LabCorp test code is #505026 and is named HNK1 (CD57) Panel. The CPL
test code is #4886, CD57 for Lyme disease. The test is time-sensitive
and must be performed within 12 hours of collection, so blood should
not be drawn on a Friday or results may be inaccurate"
 

Daffodil

Senior Member
Messages
5,875
charles...are you looking for the NK cell panel or NK cell function? i am confused.

i am just going to order the test from UNVEX from now on