I recently posted that my doctor called with my 17 week vrl result and I was informed that I was down to a wimpy 508 viral copies(I started with a vrl of 37 million). My question to everyone here is how can so few copies maintain themselves in the presence of the onslaught of these powerful drugs. What mechanism do they uses to hang on? NyGirl stated that her vrl stayed around 400 copies for months, which to me is weird because why cant the drugs just finish kicking ass. Any insight anyone?
The numbers are a little misleading. I'm assuming your viral load is 508 IU/ml (not copies) meaning measurement is in international units/milliliter, which seems to be more commonly used.
With the average human having around 5 liters of blood (1 liter equals 100 ml) that means you would have 508,000 IU's of blood in your system. If indeed your blood test was measured in "copies" and not "IU's", then you'd have to do a conversion. Note: My math and cognitive prowess is not that sharp these days so please have the above figures checked out, and come to think of it 508,000 IU's does seem a bit high so maybe I have a decimal point in the wrong place.
This is why I think there is such a high incident of relapse...while we APPEAR to get to undetctible...there are still rogue virus' hiding out inside. Even one copy would be enough to restart replication (but would not show up on a test).
Until pretty recently the tests ONLY tested to 615 copies and then you were considered UNDETECT. So I would have been since week 4 (having 411 copies). But as you can tell...I really would not have been.
Why those few hold outs? I don't think anybody knows.
As for Rocky B no Hep isn't that - I'd consider that perhaps HIV instead. Remember how LUCKY we really are.
Heptimax is meausred in IU/ml (international units per milliliter) not copies. I believe "copies" is a different measurement and you would have to do a conversion if indeed your test is done in copies. Heptimax measures down to 5 IU/ml which in reality is down to 5000 international units in your entire blood system. Again, if my math is correct.
First time I noticed it was after I had been in the sun. I thought maybe on treatment I could still get some sun and be OK. Wrong, Yes Sun and heat Does seem to bring it out. This summer I have been using sunscreen on my face and it seems to help. I think I have printed everything You and Ina was talking about last month. I figure it will help me later should I really get a problem next treatment.I know I spelled rosacea wrong thanks for the correct spelling. Hope you knew that I meant rosacea is what I had. Thanks for the tip on the sulfur lotion.
Sounds like you are feeling better, french fries and ice cream, sounds wonderful. I am on a diet I figured I could stand to lose a few lbs. Take Care, Debi
This doesn't make sense. I started with the vrl of 37,000,000. In 4 weeks tested at 150,000. then at 12 weeks 14,000. Now at 17 weeks 508. You say that 508 is really 508,000. That means my original starting vrl would have been 370 million. I'm not getting this.
Maybe someone can step in and explain it better. Meanwhile, I wouldn't worry. 508 IU/ml is considered VERY low. You have definitely shown a response to the drugs and your viral load has declined after each test. That said, you're still detectible 17 weeks into treatment. Hopefully, you'll be non-detectible by week 24.
It depends upon whether you are talking about total copies in your system or the copies per a sampling of your blood. As Jim pointed out, the sampling measurement needs to be multiplied by the factor which equates the sample to the total amount of blood in your system (for instance if you sample a cup and the total amount is say 2 gallon, then you take the measurement of copies per cup and multiple it by the number of cups in 2 gallons to extrapolate the number of copies per cup to the number of copies in the system).
So you need to take the PCR measured in IU per ML and multiple it by the total ML of blood in your system to get the total copies of virus, as measured in IU/ML by the test, in your system.
It doesn't matter in the sense that your liver isn't necessarily worse off after a relapsed treatment than before. In fact, there's a good chance your liver is a little better off although not sure how long that lasts. From what I've heard viral load will often sky rocket if someone relapses but as others have said, it goes up and down seemingly irrespecitve of liver damage.
GO: Mine VL went from 72 mil to 1.8 mil in 12 wks and then back to 2.9 mil at wk 24, ALL WHILE ON TX!
It sounds to me that you had what is called a viral breakthrough while on treatment. It is not that uncommon but does call for re-evaluation of continuing treatment or at least re-evaluation of the treatment approach. If you haven't already, you might want to consult with another liver specialist (hepatologist) on how best to proceed.
Mine VL went from 72 mil to 1.8 mil in 12 wks and then back to 2.9 mil at wk 24, ALL WHILE ON TX! For me it has not been the Rocky but the Alien of the viral kingdom which will start crawling into the engine exhaust even when flushed into deep space.
For me the concern is that the dang dragon mutates and becomes resistent to the tx or worse overcomes the blood to blood only transfer and evolves from an epidemic to a pandemic (much like they suspect now to be the case with the origin of Avian Flu). I've been told that there has been no indication of this occurring within the medical community to date, but then again I've also been told that such a large VL increase during tx has not been common either.
I only pray that I am not becoming the Typhoid Mary (or would it be Typhoid Harry in my case ;-) were this mutation is occuring.
With all this talk I got out my tests and now I am freaking out. When I started treatment last time it said
That means it was 3 mil. I was und all the way through treatment and on my 6 mo post test it was
36900000 IU/ml That means 36 mil. For some reason I thought it was 3 mil again but how in the heck it got that high after treatment scares the blank out of me. I know viral load goes up and down but it still is freaking me out. Please tell me again viral load don't matter!! Debi
Hey, Thanks I needed to hear that. Hope you are doing well and your skin problems are better as well. I have developed rosea from last treatment also. I read a lot of your post for possible help for me. Thanks for all your help. Have a great weekend! Debi
When did you first notice the rosea in relation to your first treatment? During, after, etc. Are you treating for it? Topicals? Antibiotics? How long has it been since you last treated and does it seem to be getting better? I'm finding it very frustrating with lots of triggers like sun, heat, exercise, coffee, alcohol, hot drinks, and some foods.
I first noticed it around 4 months into treatment. After treatment it did get better. But still there, mainly red now not so much of the bumps. But like you said it does seem to have some triggers. Yesterday was a bad face day. I think it was the lotion I put on it. "Mary Kay" it had alfa hydroxy, I guess I wasn't thinking DUH! I still have not bought anything new. I keep hoping it will go away. I've been off treatment for 10 months. It is not bad enough that makeup will not cover now. But I am scared that when I start treatment again for 48 weeks. I will really have a problem.
I think some docs actually treat rosacea with something like alfa hydroxy but in general it can be very irritating and cause redness. I've been using a sulfur lotion recently (sulfaced) on nose and cheeks and an immunosuppresive topical (Elidel) on rest of face. I just had some french fries and premium ice cream tonight so I'm sure it will flare by morning. Does the sun affect your rosea at all? Sun and heat seem to be big triggers with me.
Give it one more try and then some food and the gym.
Let's assume for discussons sake that the test tube they use when they draw blood is 1 ml in volume. So when you get your report back and it says 508 IU/ml, what it really is saying is that is how many international units they found in the test tube. But in reality you have about 1000 test tubes of blood in your body. So in reality you would have 1000 X 508 IU's of virus in you. Hope this makes better sense, it is a confusing topic.
Deb says: Sounds like you are feeling better, french fries and ice cream, sounds wonderful.
LOL. Actually, yesterday was a BAD day eating wise :) Even though I lost 30 lbs treating, I'm probably a couple of pounds over my pre-tx weight now so time to start eating smart :)
Glad some of the threads with Ina were helpful to you. She hasn't been posting lately but I'm sure we'll pick up where we left off. Please feel free and participate whenever you want. The more experiences the better. BTW it took me about a month to spell rosacea correctly. In fact, close to a month to PRONOUNCE it correctly. Don't know why. I guess it's one of the counter intuitive words.
BTW I bought some Zinc0 tinted from Linda Sy's web site. A quick google should find it. Currently I'm mixing it half and half with Blue Lizard BABY sun screen. Seems to work OK for walking around without irritating my face but I still wouldn't lie out in the sun even for ten minutes with it. I'm also noticing that there may be some diet triggers like maybe french fries and ice cream. LOL. Actually carbs might be the culprit including breads. Sometimes it's really hard to figure out what triggers it.
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