Antiretroviral Trial

C

Cloud

Guest
XMRV+

Before anti-viral (Vistide) Tx: IL6--7640....IL8--5250....RNAA--906....Elastace--585....NKC9--4

After Tx.............................IL6--<14......IL8--262.....RNAA--110....Elastace--198....NKC9--19


*RNAA = RNase-L activity assay

*NKC9 = NK cell function
 
Daffodil

Daffodil

Senior Member
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5,894
NKC1=% NK cells in blood (CD16, CD56+/CD3-): (reference range: 6 - 20%)
NKC2=% specific lysis: (reference range: 6 - 20%)
NKC3=% lytic activity: (reference range: 3 - 33%)
NKC4=% T cells in blood (CD3+): (reference range: 45 - 76%)
NKC5=Total T-Cell (CD3+) Absolute count: (reference range: 750 - 2310)
NKC6=NK Cells (CD56+) Absolute count: (reference range: 120 - 410)
NKC9=Lytic Unit 30%: (reference range: 8 - 170)
RNAA=RNase L Activity Assay: (normal: <50)
ELAS=Elastase: (normal: <140)
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@ 2 months on ARV's: NKC1: 3.07, NKC2: 9.4, NKC3: 30.5, NKC4: 64.50, NKC5: 770, NKC6: 40, NKC9: 2, RNAA: 115, ELAS: 134

@ 5 months on ARV's: NKC1: 4.99, NKC2: 7.5, NKC3: 15.0, NKC4: 55.20, NKC5: 1220, NKC6: 110, NKC9: 5, RNAA: 138, ELAS: 28


-------------------------------------------------------------------------------------------

@ 5 months, I did a cytokine profile, which I had never done before. MIP-1a, MIP-1b, TGFb, still pending:

IFNG: normal
IL-10: normal
IL-12: 455.2 (normal: <240)
IL1B: normal
IL-2: normal
IL-4: normal
IL-6: 28.5 (normal: <24)
IL-8: 1930.3 (normal: <14)
TNFa = normal
 
T

TheMoonIsBlue

Senior Member
Messages
442
Cloud said:
XMRV+

Before anti-viral (Vistide) Tx: IL6---7640 IL8---5250 RNAA---906 Elastace---585 NKC9---4

After Tx: IL6---<14 IL8---262 RNAA---110 Elastace---198 NKC9----19

*RNAA = RNase-L activity assay

*NKC9 = NK cell function
Click to expand...

Dear Cloud-
What qualifications do you have to meet in order to get treatment with VISTIDE? Which infections, and at what antibody levels? I assume HHV-6a is a necessity, or what if a person "just" has extremely high EBV levels? (+positive EBV EA)
Vistide, yet another medication I wish was more widely available without having to move for treatment---Arggh!
Do you know how Vistide compares with Valcyte? I have taken Valcyte.
 
Daffodil

Daffodil

Senior Member
Messages
5,894
lerner wanted to give me vistide but i couldnt afford it.

heap....i am really not sure if there is that much improvement. i dont really understand how to interpret the results and no one i have emailed has responded.

also...today is really bad again :-/

my brain is very bad and i suspect my MIP1a and MIPb will be very high. arent the macrophages responsible for the brain problems?

sue
xoxo
 
heapsreal

heapsreal

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hi sue, it looks alot like the lymphocyte sub set tests i get, i think the nk1 are what we typically are talking about when we refer to natural killer cells, the other nk cells to me just look like lymph subsets. After a second look at it, its just giving u the numbers, which are ok but its nk cell function which is dysfunctional in cfs. my nk numbers are within range but my nk function is low. By the looks of it, even if your nk cell were functioning normally, there numbers are low, which makes it hard to clear any infection. good chance your nk function isnt good, so what nk cells u have, arent doing a very good job.

cheers!!
 
Daffodil

Daffodil

Senior Member
Messages
5,894
thanks heap.

i really wish i could add valcyte or vistide to the regimen...i have a feeling its the HHV6 that might be still active. i havent been exposed to CMV.

sue
xox
 
T

TheMoonIsBlue

Senior Member
Messages
442
Hi Sue- I'm so sorry to hear that you're having a bad day. Wish I had some words of wisdom but I'm clueless about this treatment.........but still the fact that you have had some days where the symptoms have lessened sounds like genuine encouragement that the treatment is helping. It just seems like, people who have multiple infections and maybe those who have been sick longer (I think the multiple infections actually probably plays a larger role than the length of illness) will simply take longer to respond.

I wish I could go back on Valcyte, also. I stopped because it was making me feel so toxic, but I was on the max dose of 3 pills a day the whole time. I wish I could have had the option of just lowering my dose or stopping for a while. It sucks when you're at the mercy of whatever the doctor(s) wants you to do.

Hoping for a better tomorrow for you.
 
C

Cloud

Guest
TheMoonIsBlue said:
Dear Cloud-
What qualifications do you have to meet in order to get treatment with VISTIDE? Which infections, and at what antibody levels? I assume HHV-6a is a necessity, or what if a person "just" has extremely high EBV levels? (+positive EBV EA)
Vistide, yet another medication I wish was more widely available without having to move for treatment---Arggh!
Do you know how Vistide compares with Valcyte? I have taken Valcyte.
Click to expand...

Hiya BlueMoon....Vistide is big gun anti-viral medication indicated for CMV. I'm not sure if Dr P ever uses it for HHV6&7....doubt it. I had very high titers of CMV, but I'm HHV6&7 negative. My EBV was reactivated but was put back into remission with the Tx. Comparing Vistide to Valcyte? I've never taken Valcyte, but I believe it's better for HHV6. Valcyte is hard on the liver....Visitde is hard on the kidneys. I had plenty of kidney health to fall back on so it worked out great.
 
Daffodil

Daffodil

Senior Member
Messages
5,894
cloud..just not sure i understand why your cytokines would go down so much even though you havent targeted the XMRV.....which cytokine is affected by XMRV?
 
N

nventor

Messages
93
Hello Cloud,

Two weeks ago I tested positive for CMV, Ab IgG 8.3 positive >1.0 IgM 1.1 positive>1.0 LabCorp. I had prior to this been on Famvir and Immunivor for three months plus a two week run of 900mg. Valcyte daily. Since I'm active also for HHV-6 my PCP and I have decided to try a three week course of 1800mg Valcyte and see how it goes. Weekly blood tests are being done and so far I feel pretty good.

My question to you or anyone else that could help, do my CMV numbers seem high enough to treat? I thought because I do still have tremendous muscle pains and other symptoms, plus the fact I had been on AVRS for several months, my CMV titres may actually even be higher than indicated,
but truthfuly, we are a little uncertain as to how to proceed and would appreciate any insight.

Regards,

Roger
 
C

Cloud

Guest
Daffodil said:
cloud..just not sure i understand why your cytokines would go down so much even though you havent targeted the XMRV.....which cytokine is affected by XMRV?
Click to expand...

Supposedly Dr P says that increased IL8 is the one most "associated" with xmrv.....but even if that's true, it doesn't mean xmrv is the only cause of an increased IL8. Also, I doubt they know much about that yet.

With the Vistide Tx, I not only had dramatic improvements with those immune lab values....but also symptomatically. This has led me to believe that the xmrv is not (directly) causing my symptoms.
 
C

Cloud

Guest
nventor said:
Hello Cloud,

Two weeks ago I tested positive for CMV, Ab IgG 8.3 positive >1.0 IgM 1.1 positive>1.0 LabCorp. I had prior to this been on Famvir and Immunivor for three months plus a two week run of 900mg. Valcyte daily. Since I'm active also for HHV-6 my PCP and I have decided to try a three week course of 1800mg Valcyte and see how it goes. Weekly blood tests are being done and so far I feel pretty good.

My question to you or anyone else that could help, do my CMV numbers seem high enough to treat? I thought because I do still have tremendous muscle pains and other symptoms, plus the fact I had been on AVRS for several months, my CMV titres may actually even be higher than indicated,
but truthfuly, we are a little uncertain as to how to proceed and would appreciate any insight.

Regards,

Roger
Click to expand...

Hi Roger....Sorry, but I don't know the exact numbers on my CMV titer. I had mine done through "Wisconsin Viral Research Group". I was only told by Dr P that it was high. I'm not sure what parameters he uses to make these judgement calls for treatment. I guess the best advice I could give is to have your GP contact and consult with Dr Peterson on this. He would likely be more than willing to discuss this issue with your doc.
 
C

Cloud

Guest
nventor said:
Thanks, glad to see your feeling better.

roger
Click to expand...

Thanks Roger....I'm still sick, but the Tx brought me back from the abyss. I had been 90% bedbound X 3 years prior to Tx. Now...I'm back to the land of the living..so much better in many ways. Let me know if I can help in any way.
 
heapsreal

heapsreal

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Hi Roger,
Have u found improvement in symptoms while on famvir. I think we have spoken before, i too have cmv but cant get titre values tested, but my lymphocytes do come down with famvir as well as cfs symptoms I dont have total symptom relief, insomnia is still bad and do have some aches and pains, my sleep is controlled quite well with medication.
nventor said:
Hello Cloud,

Two weeks ago I tested positive for CMV, Ab IgG 8.3 positive >1.0 IgM 1.1 positive>1.0 LabCorp. I had prior to this been on Famvir and Immunivor for three months plus a two week run of 900mg. Valcyte daily. Since I'm active also for HHV-6 my PCP and I have decided to try a three week course of 1800mg Valcyte and see how it goes. Weekly blood tests are being done and so far I feel pretty good.

My question to you or anyone else that could help, do my CMV numbers seem high enough to treat? I thought because I do still have tremendous muscle pains and other symptoms, plus the fact I had been on AVRS for several months, my CMV titres may actually even be higher than indicated,
but truthfuly, we are a little uncertain as to how to proceed and would appreciate any insight.

Regards,

Roger
Click to expand...
 
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