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Thanks Alsdad, this is the kind of thing I have been looking for, so really helpful
Not much longer for you on tx, eh. I am quietly hoping very much for your success,
dtHi Doc Freeman,
There was a school of thought, I am sure you are aware, that advocated using your biggest guns up front in a tx. The thinking was to kill off as many resistant mutations as possible before they became emergent. From a virology point of view this made sense to me.
If I read you right, you are reasoning that adding riba at the end, not the beginning, could make it more tolerable, both physically and psychologically, especially for an F4 situation. This also makes sense to me.
So, if tolerability is not an issue, say somebody is F1, all blood tests normal, what would you do? Hammer the virus at the beginning to try and prevent any stray hangers on, or hammer it at the end to finish them off?
Thanks, dt
Alsdad – I looked at the PCR you posted – thanks for that, very useful.
It does not say anything on it about the sensitivity of the test used by The Doctor’s Lab.
For example, an old PCR of mine says “range of detection 12 – (very large number) IU/ml HCV RNA” meaning that the quantitative figure is accurate down to 12 IU/ml.
Do you know what sensitivity is used by The Doctor’s Lab?Also, my question is the same as LG’s – to use the postal service for a PCR, where would I go to get the blood drawn? I am thinking why couldn’t I do it myself? I am not a medical person and I don’t fancy doing it myself, but yaknow, I’m sick of dicking around with the medical profession and the endless questions about why I want to do what I want to do and my medical history since the year dot.
dt
LG – I can confirm that bloods go easier if you drink a lot of water beforehand, eg. a pint glass about one hour before. Downside is you will also need a loo nearby. The hospital blood nurses confirmed this to me. If your blood goes slowly, ask for one of the smaller blue butterfly needles to be used, not the larger green butterflies. My veins have the wierd propensity to just collapse half way through and it’s all over. Since I started these two things I never had any trouble. It’s been easy.
dtJolie -there was somebody on medhelp who added riba for the last 15 weeks of her 24 week tx. She got to SVR.
dtFurthermore – we all know that a successful tx is not about the millions of virions that go down in the first few weeks, it is about eliminating the few hangers-on that are left.
I watched that video on ribavirin resistance a ton of times and I am not convinced that ribavirin resistance makes it not worth while to use. On the contrary, there is data from the ION2 and the SIRIUS trials that show that it makes a difference in some situations. My thinking is that a DAA is a one trick pony. It has one method of action. If a virion mutation is not susceptible to that action then you can swamp it with that DAA till the cows come home and that mutation will just keep replicating and repopulate your viral load. Ribavirin, on the other hand, has more than one method of action. It is not as fast or dramatic as a DAA but it can still nail that mutant virion when the other DAAs have become useless. Which is exactly what you need to keep the pressure on when you have a few stragglers that just keep hanging on. So, in my humble opinion, I think that the role of ribavirin when used with the DAAs is underrated.
dt
Hi Em,
Here’s slides on resistance data.
http://www.clinicaloptions.com/Hepatitis/Treatment%20Updates/HCV%20Resistance%20Alert/CCO%20Slideset/HCV_Resistance_Slides.aspxThey show that for people who do have NS5A resistant variants, the 24 week tx is the one that does the job more or less 100%. The 12 weeks is good but not 100%. So just in case you have some of these fuckers that just don’t want to lie down and die, I think you are good with 24 weeks.
dt
I do see your dilemma.
So if you have to work with the NHS then can you change your GP? Pick a woman, preferably a small one. No guarantees but at least you’ll eliminate the neanderthal male factor.If you were not anxious about all this it would be a miracle. Unfortunately the times when we have to be the most strong are the times when we are feeling the worst. It does not help your cause to break down. I learned this on the trial I did when I had to really fight for what I wanted at a time when I was completely messed up by the drugs. So I guess there’s a lesson in this. Do the fighting before you get on to the drugs.
You are entitled to get a complete copy of your medical records for a small fee (£10ish) and I would recommend you do this, if only to check on your suspicions that you have got some kind of a black mark against you. Demand this and demand a timeframe for receiving them. There must by law be one. Also when you have your records it will be easier to correct any mistakes in them. Then you and your new GP can start off on the same page.
Have no doubt that others will be helped by reading this who are currently going through their own encounters with mediaeval mindsets and practices here in UK.
dt
LG – I also note that you are a small woman. I am quite tall but I have friends who are small women. When we compared notes on the behaviour of (UK) men we found to everybody’s astonishment that small women seemed to draw an inordinate amount of bullying and generally threatening behaviour. My smaller friends reported feeling threatened when they were on the street by themselves, much more than me. One of them has now left the UK and lives in the Netherlands. One of her stated reasons was that she never felt safe in public places, on the street or the buses, etc. I was shocked to hear of her being touched inappropriately on the buses. Nobody ever did that to me, but I am big enough that I would have got up and punched them, or so they might have thought.
So, please appreciate that this is all hearsay from my diminutive woman friends. It has not been my own experience in the UK. But I trust them. Unfortunately for you, you may have encountered a bit of this neanderthal throwback.
Apologies in advance to all UK men to whom this does not apply.
dt“It has made me rather tearful, you seek medical advise, wait 8 months for an appointment and they make you feel like a ungrateful beggar.”
I think that you must be a very strong person mentally to have withstood this kind of treatment, seen through it, and written here about it. You have survived what sounds like a very toxic series of experiences with the NHS and you should give yourself a pat on the back. Also avoid more of the same encounters in the future, for the sake of your own mental health.
My doc is not a bad doc, but when I complained of fatigue, he blithely made it known to me that I could avail myself of their temporary respite facilites during my wait for tx. This would be a self pay of course. Luckily I can still do all the functions of daily living, ie. get up and get dressed, go to the toilet, feed myself, etc. I bit my tongue but wanted to say that if I wanted to spend that kind of money I would check myself into a 5 star hotel for a week and order up room service. I can just imagine myself in a respite care facility, paying through the nose and then waiting all day till the nurse could be bothered to get me a cup of tea. No thanks.
My point in telling this is that I can just imagine him with the same blythe tone recommending me for a place in a permanent care home. With the level of fatigue I was feeling that wouldn’t have been too long in coming. They’d rather pass you from pillar to post right into the grave than write a prescription for generics to make you better. And they’d be cheery about it.
dt
LG – Your experiences with this consultant are so dire that I wonder about the suicide rate of people attending his clinic.
I think it is really important that you are highlighting the kind of terrible treatment that some of us have to put up with. People should know that they are not the ones at fault, that some docs simply have their heads up their arse. I think there is a real concern that vulnerable people might be going to this clinic and coming out feeling abandoned and hopeless. Let’s hope that they are reading here.dt
For anybody who has time before starting tx and is bothered by acid reflux, get tested for helicobacter pylori bacteria in the stomach.
Hopefully your doc will have done this but if not then it is well worth doing. This bacteria is a menace and can be eradicated with an antibiotic cocktail. Your acid reflux may not be eliminated but it will be improved.dt
I second that. You said it Paul.
I have had it up to here with doctors telling me I have no worries because my liver panels are all good. Some people seem to get symptoms directly related to liver function but all my symptoms are central nervous system stuff. Chronic fatigue, random stabbing pains, facial neuralgia, brain fog, general zombification. These symptoms reduce quality of life to minimal, yet doctors seem to still be oblivious !!!
It makes me crazy.dt
What will happen is Greg will think of something.
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