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An observation 6 years 3 months ago #9384

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No worries, Gaj. I knew what you meant. We should not allow any doctors on this site except Dr F. and his staff anyway :P
But for the uninformed, your clarification should help some newbies who just tuned in.
contracted Gen 1a in the 70's, dx in 2007...ast 27 to 35...alt 43 to 96...vl 1.2 mil to 8.6 mil.
biopsy F-2 (2012)..pre tx results 1/23/16 ast 32, alt 46, vl 3.1 mil
tx started 2/11/16.... lab results 2/24/16 ast 18, alt 18, vl <15 IU/ml
28 days later.............lab results 3/9/16 ast 21, alt 21, vl UND
56 days later.............lab results 4/6/16 ast 20, alt 22, vl UND
139 days later...........lab results 6/29/16 ast 28, alt 30, vl UND...EOT
SVR24
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An observation 6 years 3 months ago #9404

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Gaj wrote:
And one of the benefits to me of this site is that rather than just accepting what my doctors tell me about my HCV (and the rest of my health) I now have the confidence and knowledge to ask them the right questions about the best options and hold them to account if their answers are not satisfactory or they try to warehouse me. So all of us now understand that it is a partnership with my best health being the required outcome. To my way of thinking this is a far better situation than previously.

I agree with this in principle. I would just like to add that in a non-ideal world that partnership can look like 80% the patient and 20% the doc. In the UK, try going to the GP with vague symptoms of feeling unwell. In many cases his primary objective is to get you in and out of the surgery in 10 minutes. You might get a general blood panel done and if it comes back ok then that's it for you. Try asking for a copy of your bloods, try asking which specific tests were done and you'll find that you are entitled to get all this information in principle, but on the day the printer will not be working, or the doc can't work it and the admin staff are too busy. In about 6 months down the road you may be able to extract said printout from them if you are lucky. Thus, every simple step you want to take becomes like walking through treacle.

However, if you can do your own initial research and get an idea of what is wrong with you, you may be able to get passed on to a specialist who is a good one and can deal with your complaint. Part of your research should be to locate said specialist and not end up with some 'Mr Haughty' as featured in the dire tales of LG. Now you may think that you don't have the medical knowledge to get that far on your own. I didn't even do biology at school, but what I do know better than any doctor is the nuances of my own body. The rest I am willing to work at acquiring.

I am not for going completely DIY on medical care. After a certain point in diagnosis there is no substitute for an experienced doc who is also sympathetic to your case and actually wants to heal you. These can be hard to find, but you need to find one. By heeding the stories of others who had to go the long way round to get there, we have a much better chance of going straight to the right person. Whole decades can be lost just going from pillar to post and getting nowhere. This has happened to me and I hear it time and again from others. Wasted years and wasted lives can be saved by taking a hold of the reins yourself.

dt
Last Edit: 6 years 3 months ago by dointime.
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An observation 6 years 3 months ago #9451

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My GP knows nothing about the generics, even made me feel bad suggesting them for my son, I hope she's looking at this forum & gaining knollege.

I haven't been back to her since J started Generics.

She made me feel like a bad mother even thinking about it.. :unsure:

x
J the young dragon slayer is:
HepC 1a since birth
Male aged 15
VL 2000000
Started Twinvir/ 10-11-15-then Sof/led.
NO sides so far !
after one week VL : 37
after 4 wks VL : UND !
EOT 2/2/16 UND.!
4 wks. post tx results....pending....
7/3/16 VL result : 4 week post tx: SVR !
12 weeks SVR !
24 wks SVR yeeaa!!
Last Edit: 6 years 3 months ago by CJ.
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An observation 6 years 3 months ago #9569

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Hey Gaj,
I think you hit the nail on the head; the guests are gleening the infor. they want/need, but are not prepared to register and "give back" some.
I agree with you the wwider cross section of people would be a great benefit to all.
I don't get why they would worry about being anonymous; they don't have to use their real name, just as I and many others haven't?
So far as the email address goes, they can just creat a "hotmail" or gmail a/c for forum emails only.

Only a couple of others know I have HCV, not even out son knows, but that doesn't stop me joining forums.
That's my 2 cents worth. :)
Hep C Geno 1a - diagnosed 1990, Cirrhosis, failed previous tx Peg/infn,Riba, Simeprevir, 2015. Contracted way back in the 70's!...Currently waiting Harvoni via clinic.
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An observation 6 years 3 months ago #9571

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Hi DT,
you said it! I too have had to go from Dr. to Dr. "trying" to get the medical help and "support" I need and it's exhausting. I have had to educate my current GP; she is a lovely, caring lady, BUT, doesn't know much about Hep C and all the health issues it causes or exacerbates. If I hadn't educated myself I would still be going from "pillar to post".
It's a constant battle to get side issues from Hep C, diagnosed and treated.

An example is; my tongue has been bleeding for 7 months, there are a few tiny lumps where it bleeds from, (bright red fresh blood, about a teaspoon or two at a time), and it can bleed 6 times a day or once a day, but it's constant, I've been to my Hep specialist, my GP, Eare Nose and Throat specialist, Oral specialist and I'm now being sent back to E.N.T.

The only thing that has been mentioned so far is Lichenoid, (Liches Planus), by the Oral specialist, but she said it didn't explain the bleeding and left it at that?
All I know about it is, many things cause it, including Hep C and Interferon, and in the mouth it causes white patches on the tongue and inside cheeks.

If anyone has any info on this or why my tongue is bleeding, please fill me in.

This is just one example of the many health issues I have that I cannot get an answer to. :(

Good luck to all, cheers Oldie
Hep C Geno 1a - diagnosed 1990, Cirrhosis, failed previous tx Peg/infn,Riba, Simeprevir, 2015. Contracted way back in the 70's!...Currently waiting Harvoni via clinic.
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An observation 6 years 3 months ago #9574

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Hi Oldie,
There seems to be an endless list of ailments related to this crap. Different people seem to be affected in many different ways. I had near constant infections, horrible reflux and dyspepsia, chronic muscle and joint pain and debilitating fatigue. I don't know how many times, hundreds at least over 30 years, I went to the doctor sure I was dying if some sort of cancer or something. I had no clue about HCV until a routine physical showed my ALT at 225 and AST at 138. The doc ordered the antibody test and the rest is history.
The liver just has such a major role in so many things.


Mike
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forums.delphiforums.com/generichcvtx

G 1a F-1
Started tx 10/23/15 (Meso sof & led) ALT 48 AST 28 v/l 1.6 mil
11/17/15 4 wk lab ALT 17 AST 16 <15
11/18/15 Started Harvoni
12/16/15 8 wk lab ALT: 15 AST: 13 V/l UND
1/14/16 Fin. Tx
7/07/16 UND SVR 24
Last Edit: 6 years 3 months ago by mgalbrai.
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An observation 6 years 3 months ago #9577

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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
:cheer: :cheer: :cheer:
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An observation 6 years 3 months ago #9578

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Hi Mike,
it sure is incredible how much the liver affects the whole body!
I have learnt so much during my journey with Hep C; It effects everything from the tip of your toes to the tope of your head and everywhere in between.
Like you I have so many things wrong with me, and all the aches and pains, cramps, joints, insomnia from hell, and my feet burn and ache like buggery, worst is first thing morning, and especially at night; they go bright red and I have to sleep with my feet out of bed, even in winter.Not to mention the damn "Brain Fog", I have it bad, so forgive my spelling errors and poor grammar. I once had a quick, alert, mind, not anymore. :S

How are you feeling since treatment, many side effects?

- (sorry it seems to take ages to page up and down, or I would go back and look at your sig.)

I'll be online for about 10 mins then have to go out to see our beautiful little grandson. I will check in again later or tomorrow.
Thanks for replying to me, much appreciated. :)

Cheers


Congratulations on clearing the beast!
Hep C Geno 1a - diagnosed 1990, Cirrhosis, failed previous tx Peg/infn,Riba, Simeprevir, 2015. Contracted way back in the 70's!...Currently waiting Harvoni via clinic.
Last Edit: 6 years 3 months ago by oldie. Reason: Typo's
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An observation 6 years 3 months ago #9585

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A dull headache the first three days Oldie. Thats it. After 10-12 days, things started to get sporty. Like a two month climb out of a 30 year hole.
Good to be topside again.
Mike
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forums.delphiforums.com/generichcvtx

G 1a F-1
Started tx 10/23/15 (Meso sof & led) ALT 48 AST 28 v/l 1.6 mil
11/17/15 4 wk lab ALT 17 AST 16 <15
11/18/15 Started Harvoni
12/16/15 8 wk lab ALT: 15 AST: 13 V/l UND
1/14/16 Fin. Tx
7/07/16 UND SVR 24
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An observation 6 years 3 months ago #9629

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www.hepatitiscentral.com/news/many-with-...ve-abnormal-thyroid/

I have been looking into whether some HCV fatigue might be related to thyroid problems. Maybe temporary thyroid imbalance caused by the hcv virus, maybe undiagnosed thyroid problems that were there already but were exacerbated by the hcv, or by a tx with interferon. Wow, this thyroid thing seems to be one difficult ailment, both to diagnose and also to treat properly. I'm not an expert on this, it is just my most recent study in case the fatigue that I have does not completely lift if I am lucky enough to get rid of the virus. I am however quite sure that at the moment I have many of the symptoms associated with a hypothyroid condition. After my last tx with interferon I went to my GP and he did some test, I don't know what (bad me) and said it was ok. Since then I have not been active on chasing the fatigue issue because I just put it down to hepC. AND THAT IS THE DANGER. You put it all down to hepC and it demotivates you from finding other solutions.

I get the argument for waiting to get rid of the hepc and then seeing what is cured and what ailments remain. But there are other things, like thyroid imbalance, which might be cured by early nutritional intervention but might need lifelong medication if let go too far. Hopefully these days people will not be waiting for years before getting to SVR, so all the other multiple ailments will also get addressed sooner.

dt
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An observation 6 years 3 months ago #9638

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Totally agree re that last paragraph DT & just wrote a post about it but the server lost it :evil:

Will attempt it again later on laptop.
GT1a Dec14 F2/8.7 VL 900000-2.5M
Jan16 Hepcivir-L MonkMed/Redemption
Baseline: VL 913575 Alt 76 Platelets low
Wk2 VL1157 Alt 23
DET Wk 8 VL 32 Alt19 'In the slow lane'
June16 Fibro 5.7 F0/1 LIF 1.5
Wk 11 VL<12 Alt 13 Det/Unq
Extending tx 12 wks Mylan Sofo/Dac MonkMed
Wk 14 VL <12 Det/Unq
Wk 16 VL UNDETECTED
Wk 22 + 4 Wks Sunprevir FixHepC
Wk 24 UNDETECTED Alt 13
Wk 12 post tx SVR12 Wk 26 SVR24
Thank-you Tim, Dr Debasis @ MonkMed & Dr Freeman @ Fix HepC
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An observation 6 years 3 months ago #9639

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I wouldn't blieve much on that website. There writer tell outright lies, half truths and exaggerate everything especially when it comes to the supplements they sell and nutrition. She's a so called "holistic health advocate" and a accupuncturist.
Genotype 1A
ALT 473
AST 226
Virus Load 3,119,030
Results as of May-2016
5 week viral load/undetected as of 12/02/2016
Liver Biopsy Results from Feb 2013
Portal/Periportal chronic inflammation and mild interface hepatitis (Grade 2)
Focal Lobular chronic inflammation (Grade 1)
Portal/Periportal fibrosis (stage 1-2 trichrome and reticulin stains utilized)
Negative Iron stains.
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An observation 6 years 3 months ago #9643

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From personal experience of what DT is saying, I find this to be true in some cases at least. I definitely think these extra-hepatic manifestations should be considered at least as possibly linked to the virus and entering into a possible life - long dependency on strong drugs with sx for some of the eg Thyroid & Glaucoma type meds eg should be carefully considered. The problem is, most Drs, especially here in the uk do not look at patients holistically at all. Specialists often seem to be only concerned with their speciality & don't seem to communicate with each other much (!) I got rid of my personal freaky mis-diagnosis with good quality Magnesium tablets. (after much research and looking at my symptoms holistically, ie supplements that also didn't harm the liver) my old consultant didn't seem to think it was relevant, but Magnesiumm also is said to help joint pain which I also had, and it did.

Of course, I'm sure, this is not always the case, especially when so many of us are baby-boomers and prone to certain ailments within the ageing process, but as I say, I believe a bit of research is definitely worth doing first, you never know, it may work and you may avoid some nasty drugs. ;-)
GT1a Dec14 F2/8.7 VL 900000-2.5M
Jan16 Hepcivir-L MonkMed/Redemption
Baseline: VL 913575 Alt 76 Platelets low
Wk2 VL1157 Alt 23
DET Wk 8 VL 32 Alt19 'In the slow lane'
June16 Fibro 5.7 F0/1 LIF 1.5
Wk 11 VL<12 Alt 13 Det/Unq
Extending tx 12 wks Mylan Sofo/Dac MonkMed
Wk 14 VL <12 Det/Unq
Wk 16 VL UNDETECTED
Wk 22 + 4 Wks Sunprevir FixHepC
Wk 24 UNDETECTED Alt 13
Wk 12 post tx SVR12 Wk 26 SVR24
Thank-you Tim, Dr Debasis @ MonkMed & Dr Freeman @ Fix HepC
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An observation 6 years 3 months ago #9687

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oldie wrote:
The only thing that has been mentioned so far is Lichenoid, (Liches Planus), by the Oral specialist, but she said it didn't explain the bleeding and left it at that?
All I know about it is, many things cause it, including Hep C and Interferon, and in the mouth it causes white patches on the tongue and inside cheeks.
If anyone has any info on this or why my tongue is bleeding, please fill me in.
This is just one example of the many health issues I have that I cannot get an answer to. :(

oldie - I am sorry that you have found no answer so far to this health issue. All that I can say is that I'd lay bets you are not the first person ever to get it. Somebody somewhere has had it and may understand it, if not be able to cure it. So you need to find them. Whether or not this bleeding tongue issue is related to hepC may not be a helpful question to ask right now, though having a chronic infection does of course have background relevance. As the sympton is on your tongue it would seem to me that you need an oral specialist to start off with. The one you have already seen does not sound up to the job. I would also suggest at some point a naturopath (ND) as they tend to have a more whole-body approach.

Fortunately, there is now the technology to search for a specialist outside of your area and even outside of your country. More and more doctors are doing Skype interviews. You are in the fortunate position of already having all your test reports. Gather them all together and scan them. Take photos of your tongue showing the relevant details. You will now be ready to email all your information to doctors of your choosing, who have good track records and recommendations. Do not be discouraged. Do not stop searching. Be prepared to travel, at least to overnight away, to get to the right person. Every day new information is added to the body of knowledge that we can now access via the internet. Your answer is undoubtedly out there somewhere.

dt
Last Edit: 6 years 3 months ago by dointime.
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An observation 6 years 3 months ago #9841

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thanks mike,
cant type much had carpel tunnel surgery on friday, only one hand.
appreciate the info.
be back in a bit, when pain settles.

cheers
Hep C Geno 1a - diagnosed 1990, Cirrhosis, failed previous tx Peg/infn,Riba, Simeprevir, 2015. Contracted way back in the 70's!...Currently waiting Harvoni via clinic.
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