Antiretroviral Trial

[omerbasket]

They are saying that more Mulvs have been found in humans, not published yet. All mulvs closely related to XMRV so maybe react to same drugs. You are a warrior Daffodil -but if you want to stop we'd all be with you, safety first.

We will all be with you, I believe, in either case, wether you want to stop and wether you want to continue. Some of us choose safety first, and others choose to take the risk in order to have a chance to enjoy the benefits. Although it is not of our bussiness to tell you what to do, I do think that every choice here is very reasonable - in either way.

 

[Daffodil]

hi all. thanks for the good wishes regarding the other MLVs...i would also like to know more about this...where is this info? the "related viruses" dr. alter was talking about were diffferent strains of XMRV.

5 days after starting tenofovir now....some new inflammation has gone down but i am still at baseline, sick as before. head very swollen.

i am having trouble sleeping because of the twitching and the nausea, which sometimes it severe.

no other news so far....

i asked dr. mikovits about adding acyclovir but she didn't seem to think this was a good idea.


thanks for reading
sue
xoxo

 

[omerbasket]

hi all. thanks for the good wishes regarding the other MLVs...i would also like to know more about this...where is this info? the "related viruses" dr. alter was talking about were diffferent strains of XMRV.

His exact phrase was: "XMRV and related MLVs are in the donor supply with an early prevalence estimate of 3%-7%".
Are these realted MLVs different strain of XMRV, or are these two different viruses?
And anyway, if they are different strains, I guess that if you have a different strain your blood tests might not find it, and perhaps, also, different strains might not be reacting to the same drugs (and might be reacting to other drugs). Am I right here, people?

 

[Daffodil]

omer yes you are right. i asked dr. mikovits if dr. alter meant diff strains or diff viruses and she said diff strains...but i dont know why he would call them "related MLVs"...sounds a little misleading. anyway, i hope it is just different strains.

i was reading that article about how WPI started and annette whittemore said her daughter took 1 year to improve on ampligen...so maybe it wil just take very long? i dont know.

sue
xoxo

 

[Daffodil]

hi all. just got interesting lab results. my elastase, which is usually through the roof, is now 134 (normal is <140). the RNase L activity is 115 (normal is <50). usually, this value is well over 1000 for me, once it was nearly 2000 (though it did normalize once on valtrex). but my elastase has never been normal before.

really did not expect these values. perhaps i am on the right track and the NK cell function recovers much later?

VIP stopped doing the LMW RNase L testing, saying that elastase tells you the same thing....so perhaps the LMW RNase L would have been normal too.

sue
xoxo


ps....just found out this is similar to the immunological responses they are seeing in others on the HIV meds.

 

[Tembo]

Oh Sue I just sat down to catch up on the board and saw your thread which I have been following - when I read your above statement my eyes welled up with tears and my heart broke. I thought my CFS was bad but reading your thread made me realize how thankful I should be. Im so sorry this evil disease has got you so low and I pray more than anything that this new treatment does something for you.

Keep your chin up - there has to be light at the end of this tunnel xxx

 

[redo]

ps....just found out this is similar to the immunological responses they are seeing in others on the HIV meds.

Interesting!

I think much of the improvement HIV patient experience symptom wise comes a bit into the cure, and that their values too improves earlier than the symptom improvement.

I wish the RNase test was cheaper.

 

[Daffodil]

Tempo...thank you. Yes....the disease has hit me very hard for the last 4 yrs. I hope you are doing much better than i am!

Redo....i just test my RNase L because i tested it before and wanted to compare.....but i dont think they found a correlation in the Science paper so maybe the test doesn't even mean much.

Sue
xoxo

 

[omerbasket]

Well, Sue, perhaps these are signs that the drug does work for you, even if it's still not improving your symptoms right now?
I'll let the scientists here talk, but I really hope that some time soon you will experience a significant improvement. We all hope that you would.

 

[Rrrr]

hi all. just got interesting lab results. my elastase, which is usually through the roof, is now 134 (normal is <140). the RNase L activity is 115 (normal is <50). usually, this value is well over 1000 for me, once it was nearly 2000 (though it did normalize once on valtrex). but my elastase has never been normal before.

really did not expect these values. perhaps i am on the right track and the NK cell function recovers much later?

VIP stopped doing the LMW RNase L testing, saying that elastase tells you the same thing....so perhaps the LMW RNase L would have been normal too.

sue
xoxo


ps....just found out this is similar to the immunological responses they are seeing in others on the HIV meds.

sue, this seems like very good news indeed!!!!

hey, can you clarify yr last sentence? do you mean people with hiv or do you mean cfs folks who are doing hiv meds now?

 

[ukxmrv]

Sue,

I hope that you feel better about trying the drugs after receiving these results. It's good to see positive returns even if you don't immediately feel the benefit. May take longer for the good effects(on paper anyway) to seep through to real symptom improvement for those ill for a while.

Did your doctor have any comments about them?

 

[Daffodil]

thanks guys. no my doctor didnt comment and doesnt seem to know much about XMRV i think. if he does, he doesnt tell me lol

Rrrr...i mean the CFS people who are doing HIV meds.

with ampligen, i did hear blood work normalizes long before there is clinical improvement

dr. lombardi told me to wait over 6 months after RNase L normalizes to notice improvements...so maybe i could be on the right track, who knows. my NK cell function is still very very bad

sue
xoxo

 

[Hope123]

Thanks for continuing to report your symptoms, Sue. Those declining numbers look good. I know you're low on funds but it would be interesting to see if your cytokines are high and if they continue to normalize with treatment. The Kerr paper a few years ago treating people with parvovirus with IVIG (where all 3 people returned to normal function) showed a dramatic decline in cytokine levels over time to normal.

http://www.cfids-cab.org/cfs-inform/Virus/kerr.etal03.pdf

I send you my good wishes! Hang in there.

 

[Daffodil]

hi hope thanks.

i did think about testing my cytokines. i had IL6 and IL2 tested in 2007 by dr. levine in NYC. but VIP only offered the full cytokine profile and i was already paying $950 or so...so i didn't do it. but yea...these are supposed to be a good early indicater of improvement i think.

i will look at where levine did the testing and see if the same lab would do it for me now, so i could compare. thanks for the idea

sue
xoxo

 

[Hope123]

hi hope thanks.

i did think about testing my cytokines. i had IL6 and IL2 tested in 2007 by dr. levine in NYC. but VIP only offered the full cytokine profile and i was already paying $950 or so...so i didn't do it. but yea...these are supposed to be a good early indicater of improvement i think.

i will look at where levine did the testing and see if the same lab would do it for me now, so i could compare. thanks for the idea

sue
xoxo

If you're paying out of pocket Sue (i.e. insurance not covering), talk to the lab and see if they will give you a discount. Emphasize that you are paying promptly (some labs have to wait months for payment and will discount for immediate payment) and be ready to talk about your financial status. Some labs have ability to discount for people who have low income.

 

[jeffrez]

sue - glad to hear some of your test results seem to be improving. I hope you didn't take some of my earlier comments the wrong way, as some apparently did, my intent was merely one of concern for your best health. I hope you can start improving subjectively, also. Best wishes for a successful outcome.

 

[acer2000]

hi all. just got interesting lab results. my elastase, which is usually through the roof, is now 134 (normal is <140). the RNase L activity is 115 (normal is <50). usually, this value is well over 1000 for me, once it was nearly 2000 (though it did normalize once on valtrex). but my elastase has never been normal before.

really did not expect these values. perhaps i am on the right track and the NK cell function recovers much later?

VIP stopped doing the LMW RNase L testing, saying that elastase tells you the same thing....so perhaps the LMW RNase L would have been normal too.

sue
xoxo


ps....just found out this is similar to the immunological responses they are seeing in others on the HIV meds.

So what was your NK cell function?

 

[Daffodil]

thanks kite..i cant rememer anything so even if someone said something to offend me, i wouldnt keep track of it lol

hope...LabCorp discounted because i was paying out of pocket but i dont think VIP ever did. i will email them and ask again....thanks for reminding me! i should have asked.

acer....i will list the abnormal results:

% NK Cells in Blood (CD16, CD56+/CD3-) : IN 2007: 7.80 NOW: 3.07 (normal range: 6 - 20%)

NK Cells (CD56+) Absolute Count : NOW: 40 (normal range: 120 - 410/cmm)

%CD19 (LYEA) : NOW: 32.86 (normal range : 6 - 25% )

Lytic Unit 30% (LU30) : NOW: 2 (normal range: 8 - 170)


...ok i guess i have lost my other 2007 results lol...i will have to ask them to fax me copies tomorrow. geez i look pretty sick :-/

sue

 

[Daffodil]

so i was looking up how long it takes to increase CD4 count in HIV-infected patients once they begin HAART...it tooks like it increases significantly in the first 6 months and then keeps increasing slowly for up to 4 years. perhaps it would be similar for NK cells in CFS.

it is possible that my counts were even lower before i began ARV's though....they haven't been tested since 2007.


sue

 

[redo]

I've read that Peterson recommends the test for decrease in NK cell function for CFS patients.

Do you know if the CD56 test you have taken is that particular test?
Or is it the "% NK Cells in Blood"? Or is it another test he talks about?
Which lab does the CD56 test?