As has been stated before it is soooo different for everyone.
My first couple weeks were livable. Not pleasant, but if that was as bad as it got I could do it.
Week 6-12 I thought I would die. Literally every day thought I was dying. Heart palpitations, couldn't walk, breathe or anything. got the thyroid regulated and felt better.
Had a few good weeks. Weeks 23 - 30 (current) I've been sick every week. Weekends are spent with fevers and body aches and pains that don't leave till Sun eve. The last couple weeks the metal taste in chest and mouth along with GERD, has been particularly bad.
Fatigue and weakness lasting thru the week has been particularly bad.
Panic attacks stopped a couple weeks ago. Didn't lose any weight the first 24 weeks - lost 35 lbs since then.
For me the sx's have been worse the second half of tx. I hope they clear up soon. I'd like to have one week of no sx's.
The article cited sort of sounds like the same thing that I have been hypothesizing , albeit my rationale is less scientific, for several years now.
I really do believe there is much more than meets the eye regarding how this virus works, and where it 'goes' after successful tx (and before tx, for that matter).
My ongoing emphasis is for the research community to pursue this issue aggressively, to determine what, if any, health consequences this ongoing 'persistent infection' might have. Issues like ongoing autoimmunity, lymphocyte related diseases, and so on, should be explored thoroughly. We also need to understand why over 50% of SVR's seem to manifest the same pre-tx symptoms long after they are 'cured' of the virus.(several HCV doctors I have spoken with refer to this statistic). Maybe it has a major connection to the 'persistent virus' replicating at very low levels in various 'compartments'.
ALSO, we need clear answers on whether or not HCV can truly 'infect' the nervous system tissues, the brain, spinal column, gastric tissues, etc. Studies are always in conflict over these questions, and about half fall on each side of the fence. Science should be doing better than this! Research studies need to be designed to determine positively, whether this happens, and how many organs it might affect.
My ongoing concern and suspiscion, is that this virus is really NOT just a 'blood/liver' virus. It may like many different tissues. The article above seems to agree.
DoubleDose
Fl,
Sure like your doctor and nurse always wash their hands before examining you and after touching a surface that might be contaminated. Like the nurse always follows correct protocol for taking your blood pressure, etc, etc. If the lax attitude I notice in hospitals and doctor's offices carries over into instrument sterilization there's bound to be trouble. A news article several months ago talked about how easily infections are spread in a hospital, and how you can walk in relatively healthy and end up sick.
Fish,
Week 1 -- Sucked
Week 2 -- Sucked
Week 3 -- Sucked Big Time
Week 4 -- Sucked Big Time
etc, etc,
I've always assumed that the greatest danger in getting sick is at hospitals. Lots of yukky stuff happens there, and all those sick people too.
The scopes on 5/22 are the last pieces before getting more opinions. Every other test is done and no older than 1-2 months, with the excpetion of the year-old bx. The bx slides are being held for me at the hosp. pathologist. First stop is a local hepatologist and then a univ. liver clinic - both by the end of June. Best guess is more tx start in Aug or Sept, want to get some value from the summer (kids off, family vacation)then I'm guessing 36 - 48 weeks.
I did not (pre-tx, 12 week, 24 week or 6 month post) have sensitive pcrs. Figured, maybe unwisely, that if detected (espicially post tx) would be greater than 600 anyway. At least that turned out to be true. It's a topic for re-tx that I'll study more, lots of good info being shared on the topic here. Will, however, do a 4-week next time. I guess I underestimated 3a - lulled by high success rates.
Hey, what happened to your "no clinical signifcance found yet" disclaimer. LOL.
re: "We also need to understand why over 50% of SVR's seem to manifest the same pre-tx symptoms long after they are 'cured' of the virus"
Very difficult to isolate what pre-tx symptons were caused by Hep C and what aren't, given the fact that many report no symptons. As to symptons after SVR -- many may be caused by the treatment drugs themselves as you have posted about before.
Just want to emphasize again that these under the radar viruses appear to have no statistical threat regarding relapse, as SVR is durable to around 99% and close to 100% after being non-detectible for one year. And as of now, no clinical significance has been attibuted to any of these under the radar viruses.
But as you say, hopefully the research will go on, and hopefully it will benefit all of us in a meaningful way. Until then, SVR is our cure in the true sense of the word both because of its durability and the fact that it's linked to stoppage and even regression of liver damage. Maybe one day there will be a more complete cure, maybe not.
-- Jim
first year sucked!
second year sucked!
this year...well you get it!
actually for me my hardest time was "mid" treatment... the ringing of the ears freaked me out and the anxiety. the eye and gum problems and the feeling sick and tired and being worn out, the sleeplessness and sleep deprivation, just finally got to me... the social anxiety and not being with it mentally...the brain fog!!! toward the end months i definately had adjusted to the sx... though they still sucked, they did get easier to deal with!!!
for me it wasn't really the initial flu symptoms those went away...nor was it the end time panic and fear of getting off to find out the results, although that was really dificult. it was the grind of it all, in the middle when there seemed no end in sight... this is was the hardest for me... thank goodness for the zanax, ambien, and ad, they really helped me through that time...
it does end though, and it is doable...and i am definately starting to feel some relief now that i'm done!!!
but, in a few weeks i have my first post tx pcr!!! yikes!!!
sandi