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…but it’s not their “detectable” number. It’s their “quantifiable” number. Hoping there is a difference!
Ken, you lost me there, don’t understand, sorry.
dtLG – there is a lab in UK – Quest Diagnostics.
https://www.questdiagnostics.com/uk/contact_us.htmlI used them a while ago. Their parent company is big in the US. I didn’t initially think of them because they have a strict policy to do tests only for doctors who are registered with them. That was a stumbling block for me but it might not be for you, dunno.
dt
Hopefully if their machines can’t quantify it below 500 or 50 or whatever, they can still see it, just not attach a number to it.
Yes Ken, hopefully, but that ‘s not the difficulty.
If I know that the LLOQ is 10 then I know that even if it can’t be quantified my vl must be between 0 – 10.
If I know that the LLOQ is 500, then I know that even if it can’t be quantified my vl must be between 0 – 500.
The 2nd option is not good enough for some purposes. To continue with my metaphor, 0 – 500 is like having the gram scale.
0 – 10 is like having the milligram scale, which is what is required for some purposes.And if I don’t know the LLOQ at all, how do I know that somebody didn’t just look at my tube of blood and say – nope, don’t see any virus there, that one’s UND.
dt
Ken – Many thanks for chiming in here.
Anyway, here’s what I expect to get from a VL report –
a)
DETected and the VL number given.
b)
DETected but no number because there were some virus found but not enough to count.
d)
UNDetectedHowever, to properly put these results in context I need to know the SENSITIVITY of the test. ie,
DOES UND mean that the test can’t see any virus below 10? Below 15? Below 500?And maybe at UND they can’t see any virus at all.
We know that there can be virus still there, even if the most sensitive PCR can’t see it. We all live with this concept. However, some people are monitoring small declines in their VL. To them it makes all the difference in the world if the test stops being able to see any virus at 500, or if it can still see the virus all the way down to 10. It’s like trying to encapsule the meds with a scale that only measures to grams when you need it to measure to milligrams. Every scale tells you when you buy it to what limits it can measure accurately, right?
And every lab test also does. So why not put those limits on the PCR report? And why give me an answer which I can only call disinformation and double talk? Is their lab equipment not up to the same sensitivity as the competition and are they trying to keep that quiet?
Agree with you LG. We’ve both been through so much sub-standard medical service now that we shouldn’t be surprised, but I still am. Indeed, has anything just worked first time, no problems. I think I’d be accurate to say – not much.
dt
Yes, LG. But I’m not done with this subject yet. I still have to get more PCR’s, so either I can get this resolved with The Doctor’s Lab or I have to find another UK lab to do them.
For heaven’s sake – all I want to know is to what sensitivity the test works. It’s not rocket science. I need the LLOQ to put the results in context. I mean, I could take a tube of my blood and look at it and pronounce that I am UND because I don’t see any virus in it. The issue is – if the virus is indeed there, how much needs to be there for me to see it?
If a patient is only monitoring for a relapse after EOT then it is not that important because when there is a relapse the numbers go up very quickly, so any PCR will detect them. So in my case I might still use The Doctor’s Lab. However for somebody like you who’s numbers are going down slowly, you absolutely need to know at what numbers the vl count goes from quantifiable -> detected but not quantifiable -> not detected. I could live with an LLOQ at not more that 15, preferably less, but I would still need to know what it is.
Watch this space ……
dtLG – see my post here:
http://fixhepc.com/forum/viral-load-results/765-quantitative-pcrs-with-lloq-missing-uk.htmlMedichecks uses The Doctor’s lab. I haven’t had time to follow up as thoroughly as I want to on this issue.
dtIf you have stopped treatment for a few weeks, then my feeling is that what ever else happens is just another, unrelated problem. How can someone relate a “rash” to a drug they stopped 6 months ago?
I’ll tell you how.
I’m not relating the following to this rash case in particular, but here’s what I’ve been looking at.Let’s take my own case. I know that I have a genetic predisposition to gluten intolerance / coeliac because I’ve had a genetic analysis. However until my mid 30’s my body ran like a perfectly tuned machine. Everything worked to optimal. I could pull a 36 hour shift and go party afterwards. I could eat anything. Then something happened. I gained weight. I became sluggish. I started to have trouble with constipation. I started to have food intolerance symptoms, bloating, wind etc. I got tired easily. My best theory is that I picked up the virus around then.
However – and here’s the point – these things have not gone away now that I have been UND for weeks. Now, as some posters suggest, they might still go away by themselves given time, and that would be my best case scenario. But I’ve been studying up on gluten sensitivity and apparently ONCE THE GENE IS TURNED ON you have it for life.
So why did the gene get turned on after 30+ years of it being blissfully dormant. Guess what. An acute or chronic viral infection can simply overload the immune system and tip it into attack mode. It starts to attack the virus and at the same time anything else it identifies as a foreign invader – in my case the gluten protein. After that, all kinds of autoimmune conditions can appear in any part of the body. Thyroid, fibromyalgia, adrenal stress, neuropathy, brain stuff, etc.
I’m not a doctor and I’m in the middle of research on all this so apologies if it is not more informative, but at the moment all I can do is point a finger for anybody who has developed autoimmune conditions. Obviously if you’ve had interferon then that would have exacerbated the situation. The message is that if your genetics have been altered by the hepC infection, if certain genes have been turned on, then you can’t look to that reversing itself after SVR. This applies to any condition for which there is a genetic disposition, not just autoimmune conditions.
dt
Hmm is it scary?
Not unless you’re claustrophobic.
I’ve never had one myself and hope to never need one – I am claustrophobic. They’d have to have me valiumed out to get me into one.
dtI feel sure you could add valuable knowledge and insight to this site by such an approach.
I have no problem with A.L.s approach. Whether I agree with him or not, I’m glad he’s around and providing input which shows an independence of thinking.
dt
and my rather large amount of coffee drinking in the morning with meds, I actually think it’s very possible I’m not absorping most of the tablet
If you are washing your meds down with a large amount of coffee, any fluid actually, and especially on an empty stomach, then I think you are washing away the stomach acid that you actually have. The stomach secretes acid in response to stimuli in expectation of receiving food to digest. You then eat the food and the acid gets going on it. To maximize the acid effectiveness, ie. not dilute it, it is good to refrain from drinking much fluid for at least 20 mins after the food goes down.
So I think that one thing you could do right away without adverse consequences is move your meds to one of your mealtimes, the one where you are most likely to feel hungry and up for it. Don’t drink with the meal other than a few sips to get it down. Do that for the first hour after the food goes down. Just my 2 cents worth on digestion. I’m no digestion expert but I’ve had my ups and downs with it over the years.
dt
You couldn’t get the riba from your NHS consultant, could you? They have piles of it in their pharmacies and it’s cheap so I don’t see the problem, unless there’s some stupid red tape thing with mixing private and NHS meds. You never know what those jokers will come up with.
dt
On a further note to the usage of the betaine hydrochloride, it’s not for taking on an empty stomach. It’s best for taking near the beginning of a full meal with protein. So if this supp. looks like it might work for you then you need to move your meds, probably to your largest meal of the day. Led is not affected by taking it with a large meal. Dac is – but for the dac you don’t need the acid in the first place.
well, yes dt, I will do 24 weeks, but if cirrhosis is there it could be more thoughts on which meds,
Riba has been suggested egI see. Thanks for explaining that. So long as you have the time I think it’s fine to wait. If it happens that the time is running short then I think you should order the dac/led right away and order the riba later when you decide. It won’t make much difference if you start the riba a few days late, but if you miss a few days on the dac/led ….. well, just don’t do that!
dt
Well folks, how to I get that stomach acid going?
If you were not on tx I’d suggest a supplement like “Betaine Hydrochloride with Pepsin”. That is more or less straight hydrochloric acid into your stomach to supplement what you already have. As you are on tx I’d have to say to run it by the doc first. I have no idea if it is a valid way to increase stomach acid while on tx with led.
Also, there’s a right way and a wrong way to use this supplement.
Have a read here and google it for more info.
http://scdlifestyle.com/2013/10/4-common-betaine-hcl-mistakes/dt
I think this scan nxt weekend would help me decide, if there is cirrhosis or not, hopefully I will find out
I can understand that this question must be giving you a lot of anxiety and you want an answer on it.
What I’m not sure about is how that answer will help you decide on anything? As far as I’m aware, the only decision that is relevant to cirrhosis is whether to treat for 12 or 24 weeks. As I understand it, 24 weeks is already decided upon.If you are just needing a milestone in the future as a way of delaying your decision while you gather your wits about you and consult with your doctors then that is very reasonable. Otherwise, with time not on your side, I’m not sure what factors to the decision making process that you hope to gain based on the results of your upcoming scan.
dt
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