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Wow, LG sounds like you’ve been through a lot recently. I’ve been sick and not on here much so trying to catch up.Feel so relieved for you having the MRI and getting such good results. The stress you were going through felt palpable, I really am happy for you.
Hope you sort the malabsorption/B12 issue out. Don’t forget that the high MCV reading can indicate not just low B12 but low Folate – because they need each other.You said awhile back you have a ‘Scientific Naturopath’ friend, why don’t you get her to prescribe probiotics/prebiotics – because malabsorption involves the stomach and intestines – and a pre-metabolised form of B12 – because
“But many people with deficiencies have defects in digestion, absorption or metabolism, and they need the pre-metabolised form of B12, which is methyl-cobalamin.” For e.g. there are sub-lingual forms and even nasal sprays. As DT mentioned the Betaine HCL is a good method to help rectify the low hydrochloric acid levels BUT it is something to be taken under supervision and NOT with corticosteroids, anti-inflammatories or NSAID’s.I take Nexium which unfortunately is to lower stomach acid levels, meaning I’m also probably suffering malabsorption and/or B12 deficiency.
Dr F has run a heap of blood tests so I’ll find out in next few days.Like you, I have been very unwell for several weeks now, I’m in Week 9. Have discussed with Dr James about continuing on for 16 weeks, or longer if necessary, to be close to that 100% chance of killing off the stubborn mutants.
Thinking of you and wishing you well
QLD Australia ☀️
G3a HCV 35 yrs Tx naive
Started Sof/Dac 13/01/16Dec ’15
AST 70
ALT 89
GGT 124
Fibroscore 8.5
F1-F2
13 Feb’16 VL UND
AST 24
ALT 26
GGT 50HThank-you Chejai for your message, interesting re B12, Dr Debasis recommended a course of Probiotics & digestive enzimes post anti-biotic course, will write more when I get on ither comp. Sorry to hear you’ve also been unwell, sending warm wishes to you, back later
Hey Zhuk, hope you’re swiftly on the mend
Hey, BIG
to you all from me xxxx
Hi again Chejai – Thanks again for your very helpful message.
I am so very sorry to read (in other threads too) the symptoms you have been having to put up with and I do hope they ease for you soon ! It sounds like you have alot on your plate right now re moving etc Phew – Try not to overdo it and go at your own pace I say.
Do you know which week you went UND? I don’t blame you for extending if it improves your chances more for clearing. It’s a good idea to do this without a break from what I can gather, before those pesky mutants rear their ugly little heads and come back stronger. I am sure you have a very fine chance of SVR now, but we are all different and if it ups the % then go for it.
I am a strange one (!) in that I am going in the right direction but at a snails pace. There are concerns re Low absorption (digestive issues?) / Genetic RAVS and / or I am simply a slow responder! The problem is, how can we know which one? Pretty impossible really as not tested for resistance pre-tx , absorption has always been an issue with me, pre tx too, but we have never got to the bottom of it (pardon any pun!) and so, I find myself extending treatment after much consideration and advise from those who help me. Pretty fed up re length of treatment getting longer, it’s not so much that, but add on the 12 weeks EOT and summer will be over and autumn will be approaching, so a much longer ride on the roller-coaster !
This B12 /Absorption thing seems complex, I am considering and reading up on all advise, Yes dt has excellent advise there too and has really researched well.
the high MCV reading can indicate not just low B12 but low Folate”
It is not ‘that’ high, just a little raised, but what is interesting, is that it never was before and the last two bloods it has been.
It sounds to me, your face , eye, pain etc could be affecting a nerve? Nerve pain is just horrible – Poor you. You know Dan had nerve pain problems and tingling hands and feet and hasn’t yet got to the bottom of it.
I am also thinking of you and wishing you well from across the seas Chejai
LondonGirl wrote:Hi Ariel, “For whatever reason I am a slow responder”.
VL 32 at mid week 9.
Feeling alot better, but have to extend.
All other bloods good.
Got MonkMed Dr Debasis & Dr F on it.Good news with the impressive MRI! Only mild F1-F2 is reassuring.
You are in good hands and extending the tx is the best choice.
And your viral load is decreasing sloow but constantly !Wish you all the best and UND soon!
Thanks for your kind wishes isaing
Actually, I think I’m F1(5.6) – down from F2 in 2014 (8.7) (told you I’m a strange one !)
Feeling better in many ways over the last few days, I’ll just ‘keep on keeping on’
Thankful I can extend as necessary.
How are you doing? Hope you’re keeping well xx
Oops! Yes, you are F1. I am so pleased for that.
Thank you LG for asking. I am well and all good till now.
The old game of waiting. Waiting the medication to be affordable, waiting to start tx, waiting the first UND, waiting EOT, waiting SVR…
I try to enjoy life between those expectations!I wish you all the best and UND soon!
Hi Tom (Tlondon),
The answers to your questions are Yes, yes, yes and yes. Send an email to help@fixhepc.com expressing your interest and askIng for further information to suit your situation.
G3a since ’78 – Dx ’12 – F4 (2xHCC)
24wk Tx – PEG/Riba/Dac 2013 relapsed
24wk Tx – Generic Sof/Dac/Riba 2015/16 relapsed
16wk Tx – 12/01/17 -> 03/05/17 NS3/NS5a + Generic Sof
SVR7 – 22/06/17 UND
SRV12 – 27/07/17 UND
SVR24 – 26/10/17 UND
Hi FFox, My feeling would be to test early week 9. This will give you a good idea of how it’s going and enough time to order more meds should you need to extend (unlikely, but hey, nothing wrong with having a plan B )
When you have been at the mercy of NHS England for some years, you gradually learn to assert yourself ! However, when feeling low and unwell or anxious, , we can be forgiven for not being ‘on the ball’ but anyway, you can’t control how the conversation goes as it involves two people
but you can be prepared with your questions ready and learn a bit of ‘Dr speak’ – I have learned they like measured reasoned requests with some Dr lingo and phrases included, I mean, they are using them all day after all? An earlyi test is good, just to see if you are responding to the meds. Then, whereas most get a <15 at 4 weeks, not everyone does. There is still an excellent chance for SVR even if not UND at 4 weeks into tx, these are powerful medicines, but if not UND at 9 weeks, you have time to consult Drs and decide on your tx options for the foreseeable future.
NHS England may have only offered me 8 weeks which would not have been enough for me, even 12 , so you need a plan B just in case, that's my way of thinking and thankfully easily doable thanks to MonkMed fast tracked FedEx, Dr F & FixHepC so I wouldn't worry yourself too much
Link on the subject : http://mobile.aidsmap.com/HCV-viral-load-levels-during-treatment-and-speed-of-decline-do-not-predict-cure-with-interferon-free-therapy/page/2962856
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