Hep C Discussion Forum

Dear Tig & 5 & Obs....thank you all for your support really lifted me at times.  Well the news...I set off having changed the appointment on the 3hr+ journey to Pattaya & aside from getting lost due to road works & driving for 6 hours...crazy

road works which entailed a complete reversal of 80 kms each way...I get a phone call at 9pm at night with an hour to go...Dr has Covid!! Anyway I had contacted the Hematologist at that hospital & they arranged for me to see her & take

blood for both her & the liver specialist.  He was to call me when the results came through.  Now 3 months after end of treatment.  My foot was so swollen due to the drive I was worried.  However aside from the d-dimer being off the charts

almost at 409 she told me not to worry about it & she sort of agreed that the treatment could have caused the infections & DVT.  Got to stay on it for 6 months at least through 3 months now.  Anyway I am feeling great my energy has been

coming back I'm limping around a bit but moving & even went to lunch with friends today & had the energy.  The Dr rang me on Sunday..its gone he said undetected!!! Woooh...so grateful so very grateful.. Thank you all - can I ask did any of you get tested again after a year? I know its gone I can feel it - so long since.. I slowly am just different.  Good luck to all of you.  xx

Oh my goodness Blue, what a bunch of crap you've had to go thru.

I pray the DVT dissolves easily and that the probiotic supplements keep working good for you. I decided to incorporate them daily myself just in case.

I'm so sorry you had to go through all of this and even getting shipped off to a mainland hospital. I am happy to hear your lungs and kidneys are ok in all of this.

Please get well soon.

5

I'd like to know how you know you have thrush, what does it look like? My tongue has felt weird ever since I had covid in Feb.

I've seen 3 dr's and they said I needed more flonase becos it is allergy but that made it worse so I quit that and got a little better...then I quit my antihistamines awhile back and it improved some more and I haven't had any allergy symptoms [except for the tongue but those things didn't make it go away anyway].

so I figured I'd ask you guys here.

thanks everyone, 5.

Congratulations on reaching the finish line!

Hi - ya all...well today was my last pill feels like a mountain though I take a pill every day for thyroid it really isn't the same.  I am so relieved I managed to follow the protocol & was rarely late more than a hour or so taking it.  Also the water I've noticed I cut down my water & my skin and tops of my fingers looked dry & like I'd been swimming for ages!  Within half an hour & half bottle of water completely changed.  I have one more problem that has showed up.  The muscle cramps have gone but I know they are somewhat serious - I think partly they were caused by stopping smoking & coffee.  It was too much all at once.  So roll-ups are fine & maybe 2 coffees which is very little for a coffee addict. 

Tig dear...yes I always get thrush from antibiotics & it can take a while to right it.  I just got the bacteria in pill form 1million live bacteria you can get from health food shops.  It has taken about 10 days to feel completely sorted.  It is very painful & for me has got worse over the years if good bacteria is compromised.  Luckily the Epclusa did not cause this that would be a nitemare for sure.  I only took antibiotics 7 days!!

I am left though with my right leg top on right side just below last 3 toes has edema which is proving very difficult to get rid of.  There is also a little build up on right front of same leg in the middle by the shin about 6-8 inches like a bulge but it indents a bit.  So because I've had it in the other leg cramps etc but any swelling reduced quickly I'm not sure it could be a DVT - more because I'm not moving enough.. the problem there is my spine.  The pain is terrible after about 15 mins & I have to sit down.  I also checked the accupuncture points on the foot & would you believe it both areas on the foot & shin are related to the right lung which is where I have had the problem.  So I really need to stop the smoking or continue to reduce that.  This one is the hardest addiction for me.  Anyway enough just slowly trying to do more.  Been into town alone & enjoyed the time & as long as I could cross a road walk a little I felt better.  The other thing is a lot of past memories coming up & I'm crying a lot...frankly think its ridiculous as I should be so grateful to be free of that terrible virus.  Love to you all.  Thanks for reading x  Roll on 5th December when I get final blood work

Sept 13th , that's next Tuesday

I'm so glad for you that you are where you are and are on your way to cured!

OMG Fantastic news!

Seems you just got started and now you're well on your way to full recovery, what a blessed day.

And let me give extra kudos for getting that other serious dragon off your back!!! That is a great start so keep it going! the first two weeks were hardest for me. At the ren faire they call the smoking area the "Dragon Zone" Looks like you may have slain two dragons with this battle! Yeah!

blessings, Iriss

WOOHOO!! Welcome to Club Zero  

It sounds to me like you’re in the right place, at the right time! How absolutely perfect that is. We are all thrilled with your good news. Keep on track and continue hydrating like water will run out tomorrow, lol! You got this 

Hi - 5, Iris, Observer & Tig....wow amazing & for sure divine intervention.  I spoke with my dear friend yesterday who is in UK - she said you know Nic you would still be waiting for the hip op here & litte chance of Hep C treatment.

The news while waiting yesterday for the bloodwork re: the pneumonia which is weird because I have had no fever...Doctor on the island is going to liase when I go to get checked on Monday or Tuesday.  Today she is still a bit worried about it as it takes time to recover - still a little blood 

blood but no pain so I will just keep quiet, eat & sleep & heal.  The CBD that way Iris sounds good for me ...& yes after all these years looking over my shoulder for smoking its now legal is so ironic.

Ok so as I'm waiting to see the Doc...I was phoned by the Hep Doctor...he just told me VL....I'm undetected!! Amazing its so emotional.  Thank you so much you are good people & I go back 5th December so one more month of Epclusa generic + 3 months.  Woooha. - I did not want to stop smoking cigarettes as I had given up so much stupid I know...but the desire has been lifted for a cigarette the last 6 days which is absolutely incredible.  

Awww Bluestate

You poor dear  What a relief that it is pneumonia. Coughing blood must have been kinda extremely terrifying. Hopefully you are going to start feeling better really really soon with the IV antibiotics and youll probably be happier being an outpatient and not being stuck in the hospital. Keep drinking that water .
interesting that your Dr didnt blame the CBD oil for triggering your sharp and moving pains its probably just your poor old immune system and damaged liver not being able to process.

Ive had pneumonia and it is very overwhelmingly awful 

Those enzyme numbers are great!!! Cant wait to hear about your VL. Do let us know 

An update...after coughing up blood & generally freaking out - I got to see my doctor yesterday.  He sent me to pulmonary & I haven't smoked now for 4 days nor had any desire after 50+.  Decided it was bacterial pneumonia which

frankly is a relief - they decided they wanted me in for 5 days hospital for an IV antibiotic.  The cost with everything else was prohibitive like $1,000 a day only for the bed...then meds etc.  so I am going outpatient for 2nd IV today!.

I am very sick still but woooping as also at the end of everything I went back to the Hep C doc & he reckons I may only need another month of Epclusa.  My blood work looking much better but at the top of the range or at the low end not much inbetween.  AST is 29 ALT 38.  The WBC is high at 10.42 but I think that is to be expected.  He is waiting for the VL which should get on Wednesday.   I told the Dr about the CBD oil he didn't think that was the cause.  The same as observer...here in Thailand they just made it legal on 9th June...& now I cannot.  I thank you all for the support I have really needed it so very grateful that I found this place. Blessings to all of you on our spiritual & life journeys.  

Hi Blue,

I’m sorry you had such a bad reaction! I can’t for the life of me understand why CBD oil would cause such a problem, especially in such small amounts. Is it possible that it wasn’t pure, and had something else in it, like a high solvent content? Did it taste off? That probably scared you to no end! Please let us know how you’re coming along. I would try and find out where that oil came from as well. Experiencing that kind of pain from two drops of pure CBD oil doesn’t sound right.

Congratulations on reaching the half way point! Are you keeping up on your water intake? That’s so important. Keep yourself hydrated and flushing out those toxins. 

I hope you’re feeling better!

Thanks again all of you.  I am sorry to hear the forum will close.  I did something really stupid & my doctor is 4 hours drive away.  I have 4 more days on the 12 week course & someone came to see me yesterday & I had two drops

of strong CBD in my coffee....a few hours later I was in a lot of pain my liver is totally swollen & pressing against my lung so its difficult to breathe....I couldn't sleep all last night due to the pain.  I can't sit or lie down its constant pain & stabbing too  - never  before had swelling a little but not pain like this.  I then coughed up a bit of blood.  So I rang the Doctor ...he's on day off.  It was a tiny streak of blood  very very little   I don't want to take ibruphen (Neuophen) I'm scared too just drinking green tea & two spoons of porridge.  I don't feel sick.  It seems to me that pains have been moving around my body like the cramp & gout for a few days.  Wonder if this is the same.  Sorry that's all I can write....can't think because of the pain x

Awwww Blue  

you are such a warrior sweetheart, Im soooo happy you are living where you are and have people that can help you with your meals , its so important to have support.and coffee  
It sounds like you have been having a really brutal go.  The cramps I can relate to, I had full leg charlie horses that wouldnt stop..(I still get cramps if I run out of my magnesium glycinate), but the gout  and the back ..poor poor you!  
I cant guarantee it but when I finished my treatment and was cured of the HCV , my metabolism started working better and i definitely lost a fair amountplus had the energy to exercise again

Stay strong youre getting there  

All that have wished me well & given your time to write...thank you so much!!  It amazes me that after getting great results you return to help others get through it.  Had a bit of a fright over the last couple of weeks.  It started with my right leg on the inner calf a small lump.  I definately think it may have been a blood clot.  It disapated over a few days and I thought it would be fine with a few leg exercises I continued as I spend a lot of time on my bed after the hip op & particuarly as my feet had edema on and off after going to town walking & driving.  Unfortuntately a few days later a cramp began on the back of the right leg calf.  It was continuous but the pain was bearable & the calf fairly hard.  Then the gout started boy was that painful, I had to take para.  It lasted about 5 days in the right foot big toe and at the same time the cramp moved down towards the ankle.  Anyway it all lifted completely what a relief!! However yesterday I drove to the mainland to get my visa stamp & the car serviced.  Over the previous few days my ankle was very swollen full of water & it wasn't reducing on the bed or after sleep.  Just before the night before I went to town as a pillow didn't appear to work I put a box under the foot of my bed to raise it & it did the trick...my ankle returned to normal.  It was swollen when I returned yesterday but this morning its fine.  However on the outside calf of the leg I was shocked to see many blue veins not spider similar to varicous veins they looked horrid & I am sure came from all the problems cramping & gout from before.  Now the positive I've changed to carnation & I am a total coffee addict so 3 a day is now usual.  Thank for the feedback on that treat!! I am so lucky as I have this homestay in Thailand & we built a restaurant too believe me if I was in UK I wouldn't have been able to even get shopping in let alone cook so I am so very grateful for my staff & have no doubt that finding myself here on this island was absolutely divine intervention.  My energy at least yesterday was ok.  My back is very painful walking after about 10 mins, but I found that if I sit for a minute or two I can walk again for a few minutes.  The next goal has to be getting this weight off as I am still 100 kgs.  If any of you that have kept me positive head out to Thailand you are very welcome to come to spend a few days with me here, its called Journey's End...its beautiful.  Ok I go back to Doc on 15th so nearly done for retests.

Hi Nicky,

I'm sorry you're feeling like a bucket of poo, but trust me, we've been there, and we know exactly how difficult a time it is for you. The best advice is to treat yourself like the champion you have proven yourself to be already, and commit to fighting even harder toward your goal. It's not an easy journey, as you well know, but it's worth every ugly day of it. When you achieve SVR following the completion of this, you're going to feel like you've reached the summit of Mt. Everest!

I want you to allow yourself the occasional luxury of sugar and cream with your coffee. You're sacrificing so much already, between the loss of sleep, the resulting fatigue, the aches and pains of treatment and the isolation, it's okay to give yourself permission to enjoy a cup of coffee the way you want it! Limit it, you can do that. Continue to drink water like there won't be any left for tomorrow, your mind and body will be so much better for it!

If you're drinking a lot of lemon water, don't forget to rinse/brush your teeth soon after. The acids will harm your teeth otherwise. I was on Interferon, Ribavirin and Victrelis for 28 weeks. The Interferon caused a significant amount of dental bone loss and sadly, I lost some teeth as well. I'm going through extensive dental work now related to all of that. I went through treatment in 2013 using the old school treatment drugs. I'm glad you don't have to experience those horrid side effects and the lifelong problems they have caused. The DAA's have improved both the outcomes, and reduced the side effects immensely. I tell you this only to provide you with a window into the past. We're here to support you and share our journey with you. We understand your bravery and the discomfort that getting healthy involves. It's worth it!

You're a Warrior among friends, and we're here to help you battle your Dragon. It's a mean and nasty beast, but you have it on its knees now. Kick it while it's down, give it no quarter. For so many years, that lizard has caused you grief and ill health, and it's time to return the favor!

If you have any questions at all, don't hesitate to share them with us. You're going to beat this, that I'm certain of! Keep your chin up, stay positive, and treat yourself well. Of course, drink water until you feel you can't drink another drop, then drink another glass! You can do it, I know you can...  

Hang in there Bluestate, rest, water and eating well are all you need right now.

So sorry to hear about your rash, it makes sense that its toxins. I get a lot of annoying  skin stuff when my immune system is struggling. I hope you can get some relief or that its short lived. I had days or weeks of major itchiness when I was doing treatment. 

Sorry youre feeling low emotionally, it is a hard slog some days. but each day is closer to healing.  Do make sure you are eating as well as drinking water. I had to take my meds 2x (12 hours apart) a day and with foodI spoiled myself with cinnamon buns or other treats. 
 
Take care, and let us know what dr says , Obs

Thanks to all of you for the useful replies.  I am having a rash now here & there not too many - like little pimples coming & going small with a white head.  Toxins I think. Interesting about the Hep B, I did not know it was a series.  I know when I first came to Thailand living about 13 years ago I had one Hep A...but did not go back for the 2nd.  I am getting some very rough days, metally memory lapses & tired.  I feel ok some mornings - other days I feel terrible but nothing particular - rare headaches.  I do hope that I get a good result at the next visit.  As for the Kefir yes I read where it originally came from.  I think it is normal to have an upset stomach & I do know you are supposed to start of slowly but as someone did it for me in a pint mug I kept drinking it.  Now I'm back to normal.  Very happy to talk a little.  I don't speak Thai so I spend a lot of time alone presently.  That should change now the country is opening up.  I am a bit freaked out as although the hip replacement is good now - 2 years on exactly my back is bad since & I have arthritis badly in one vertibrae now 3 years on where I haven't returned to the UK I have aged so much that I don't think I can go back...here is praying that I can do that as I must even for 2 weeks soon.

hey Bluestate ,

oh yes I remember the peeing all night from  the water consumption, but flushing those drugs out make it worth it.  Thats wonderful that your liver enzymes are lower.  
I lost some weight after I was curedI think my metabolism just wasnt working well. Livers have a lot of jobs.

I also did not get the covid jab I am quite sure I had it in the very first month of the pandemic the rules in Canada at the time were very strict about even testing people (you had to have been to China or exposed to someone who had ,have a high fever. etc ) so I never got the test and we werent allowed to get antibody tests to see if we had had it.

When I did kiefer it gave me diarrhea, my dr guy said its a genetic/ancestor influenced food and the nomads that discovered it are from the Caucasian mountains so unless I have that ancestry,  my body wont tolerate it. Which I found sad because I really loved the taste and ritual of it. (My sister gave me the starters/seeds/blobs and I would add milk shake it in a little mason jar every night)

anyhoo.. thats great that youre 1/3if the way through 

Hello Blue & 5 

So glad you got an explanation from your Doc. It is uncommon to extend out to 24, but we all have circumstances that warrant changes to protocol. I have zero doubt that you will be successful. By your next appointment, your LFTs and VL will be right where you want them

You have to do your homework when it comes to starting a new dug regimen. I didn't respond to my Hep B vax and haven?t repeated it yet. I do recommend getting it. The older I get, some of these latest and greatest vaccines are sounding better! I go in next week to meet my new Doc. The worst part is all the paperwork/online preparation before you can say hello! 

Hydrate! 

Hi Observer & all.  Firstly Tig I spoke to my Doctor it seems that because I have had it so long 30-34 years I think because after 1989 I have not been at risk.  Found out by accident in 2003.  Anyway he said for 12 weeks its about 80% whereas with 24 weeks its higher I think he said 94%.  I can see its not often done alone usually with another drug - I told him I had not had the jab but bolstered my immunity, he said I should & I just looked at him.  He then said I should get the Hep B vax - that I do not have a problem with so I may do that.  I do think he knows what he is doing so very happy for that.

He gave me 2 more months supply so my costs so far just over $2,500.00 (if that helps anyone - because the costs caused me not to get treatment for so long)  I think it may cost me in total about $4,000.   The AST & ALT levels are down well  AST is normal range, ALT not quite about 10 points off & my platelet count is normal range where it was low.  Although they said my kidneys are fine I don't think they've been working properly for some time & although not ascites I have been holding water quite bloated & massively overweight.  Lost a bit after a month on the meds 4kgs but sure now it will come off if I can clear this.  All last night I was peeing every 2 hours last night much more than the water I'm drinking though I am drinking loads more while on the meds as suggested.  As for exercise its been so difficult because every muscle & bone aches.  Anyway I walked all day in the hospital - had to kill an hour after blood taken & so I walked all over two blocks.  It took me a couple of days to recover but undoubtedly I am feeling better & desire to move is returning.  Qi Gong I have done before glad you find it helpful - today my aches are pretty much gone...sure its to do with all that peeing.  I slowed down on the kefir as it effected my stomach too much so I shall continue but with smaller amounts.  Like a cup not a pint mug!! My feet have tingled & a bit numb for a few years now, I smoke which is probably why, however I found that taking B1 seemed to help that & now its not too bad at all.  Anyway all keep well & thanks for the tips & support.  So two months he just gave me & said he will next time check my VL.

Making the kefir now & have all thai kale & blueberries so let you know how that daily smoothy goes.  Should be ready in 48 hours.

So grateful to read your story Observer. Just like mine - I think I was infected then around 1985.  So sorry yours came through transfusion.  I too did not want to go interferon/peg I saw many people with side effects & not surviving.  I thought I was clear until 2003 when I went to get a check to find I had clamydia boy did they give me heavy antibiotics for that one - about 3 courses.  Anyway when they tested they asked if I wanted a Hep C.  The result of which they called me to return.  Frankly I was in shock & my parents needed a lot of my time then.  Years of fatigue followed - the rest is so similar to you including energy work & later reiki classes. I have no doubt that Chinese herbs work well but could not clear it though got me back on my feet & working,  I am acutely aware that some divine intervention brought me to this place in Koh Chang 7 years ago now where I have 6 Bungalows & very little to no stress, wonderful thai look after me which would have been completely impossible in UK with the total hip operation or the drugs for this dragon.  Still not able to do much exercise because of long healing.  However in two weeks of TX I was weighed at the local hospital a couple of days ago lost 4 kgs with food etc the same! So glad to hear life is so much better for you now.