just saw your note sadd "Just a quick note to say hi! I would talk with your doctor about infectiong other people with SVR"
Don't quite understand your note. Either you believe in SVR or not (I do). Either you believe in occult hcv or not..Personally, I'm not going to put much thought to it..And as to spreading the virus post svr, let's just say I have a new found respect for bodily fluids and leave it at that (g) pro
Hope you feel better soon!
I went back to school and kind of busy for now.. but trying to put behind the tx and post side effects... I'm doing much better but still my side hurts and nails look brittle they don't improve.. all test that have perform for Autoimmune disorders came out negative.. I have another dr. 10.20 primary dr., my Hep C close the case and they will see me until May 09 ..
Can you relate with pain on your side that comes and goes... and nails too... thanks for any feedback Pearl
See it depends on what information you are looking for but these are two studies that had to do with my specific set or circumstances and helped me achieve SVR.
Best bet is to ask a very specific question on the forum on WHAT exactly you are looking for. Between TnHepguy, Willing, Jim, Mikesimon and HResearcher one of them is bound to be able to point you to the specific link (google became one of my best friends during treatment).
http://www.natap.org/2006/AASLD/AASLD_34.htm Berg Study
http://www.natap.org/2004/EASL/easl_06.htm Sanchez Tapias
I gave my doc a copy of Berg and Sancez Tapias studies. He had heard about extending to 72 but didn't know too much. Then I got a second opinion from Dr. Ira Jacobson and he CALLED my GI and talked to him and told him how much I really knew and how impressed he was (LOL it was ALL from the forum) and offered to help manage my care WITH my doc! I was so blown away by that. He also told my GI that he would put him on his monthly email regarding all the latest and greatest stuff! REALLY wonderful man. ALso I printed out a lot of studies that the guys posted on the forum. And their own experiences (re: anemia etc) so he could see that it wasn't my imagination. It helped a lot. Although having Dr. J call him helped the most I am sure!
Without the help that I was given I would never have made it to SVR I would have quit at week 3 when I had a six point drop in just ten days. I would never have known why I kept fainting, I've never been a complainer and for me I felt so stupid that I couldn't control myself. My doc was a very nice man but had no idea either. How do you be a doctor and have no idea?
'BELIEVE ME - HE KNOWS NOW! And I still to this day send him the latest studies just in case he hasn't seen them :) At least the people who came after me will havea bit of an easier time I will see to that!
It really is so incredibly unfair that people suffering through chemotherapy can be treated with such disrespect as we are. Second class isnt even the word for it. I don't know if it is caused by the stigma or that the doctors really just don't believe it's that big a deal? Whatever it is it needs to change I just don't know how to do it. That is one reason I stay on the forum - the doctors can't help a patient but we can help each other.
Believe me I know how you feel! I don't understand how a doctor treating this disease doesn't know the most basic of side effect problems? Seriously - I'm not talking about any major top secret tricky thing we're talking anemia...etc....how many people have those problems yet they are like mystified! It's not right that we have to receive such sub-par treatment by medical "professionals" isn't it? It's like a crime I think it really is! so yes, vent away cause you are preaching to the choir here! :)
I hope you are doing well! Debby
Good, glad to hear somethings have changed in the past 5-6 years!! I have called it chemo from my first experiences from the treatment drugs!!
I'm sorry - so slow to respond... Check it out ... 3a is supposedly the most related to IVDU - hope that answered your question. Just FYI - I'm 3a and NEVER touched a needle to poke myself with until I did INF... LOL! go figure - eh?
Have a lovely day! --- Meki
Hi, Sorry to see your note so late, fortunately I found the remedy for my face skin problem - I am using Rozex morning and night and avoid sun almost completely, it works quite good so far, I am very happy for that.
Well got all my test back and everything negative for ANA, SED RATE, Antibodies etc.. I'm more confuse than ever.. I do feel a little better than other days but have a wierd sensation in my skin like nervous than run through my stomach and sides.. also sensitive to the sun.. Now what what other tests can be done.. or just wait untils something shows up later.. Hope you are doing well!! Let me know what test they did to you..? Me Pearl big hug for you!!!!
How are you?
I appreciate your thoughts, the Dr felt it was just the meds sx and could lower the riba a pill, but I just want to see the bloodwork results, they are closed today, should see them tomorrow. I finally took some melantonin to sleep, I did for about 7 hrs, I felt dizzy a little. I am only going into wk 6 and I believe water is upsetting my stomach some. I am really tired of drinking it. Club soda's good though.
Just a quick note to say hi! Thanl you so much for the note.Sounds like a good Dr.Hope your doing well.I'm gonna make a roll call thread.Be sure and post.Thank you again for the info.Makes me feel better.
are you still interedted in the stem enhance?...i wll send you some info...dont take it while on tx tho...im not too sure about that,,,BUT after tx,,,to recouperate would be great....why are you thanking me??...for the comment i made on the posting of pictures?
Ummm, Thanks for the nice thoughts - It really is pretty insane. Going from mandatory 12 - 15 hours of sleep to a current 5 - 7 hours is a pretty nice thing... Not that I am running any marathon.... but maybe one day - always gotta keep up the optimism as ya never know what is going to happen!
Yeah, I will take your advice on the FUN and same back to you & btw, enjoy the weather! MWAH.
Thanks for the note. Hope you are well too. I have been busy "in love" so gaining a little health back... so that is the secret!!! LOL.
as far as the weekend... UGH... a bit of a heatwave right now.... and I HATE THE HEAT!!!
Wishing you a great weekend too.
Wishing you a good weekend, too. Feeling tired as in dead today, so can't say much more other than thanks for writing and hope to hear how you're feeling - the real lowdown, aches and all. i can't even weed my garden and I have a beautiful one but I hope you can.
Thanks so much! You are very thoughtful. I had a good day today -- slept about 12 hours last night (with a 1-hour break for breakfast), visited with my mother in the nursing home this afternoon. Tomorrow morning I will spend 2+hours (until energy runs out) at my church helping with a food distribution mission and that will be my activity for the day.I thank God I do not have to try to work!
Hope you have a good one too, with little pain. Bless you
You deserve a big bear hug!
I will keep you posted to what my dr. says.. I had plenty pain on my side but it has stopped and like i said they did an utrasound and all came back fine.. I'm starting to have some pain in my legs very mild but it was something i never had.. the heat has some what calm today .. don't feel it .. just very weird but I have had headaches often .. I went back to Paxil for anxiety because last night I felt my heart racing.. just with the thought if maybe I have lupus you know how the mind is... I'm also greatful too that I achieved SVR and I'm able to eat now... as before had many digestive problems they are improving everyday... I will keep you in my prayers... Pearl
Hi, ok my Hepatalogist close my case because they can't do anything for me and are sending me to a Primary Dr. to findout what's going on with me have a dr. appt. Oct. 21 .. what are your symptoms now maybe we can compare notes..
Thanks for any help, Pearl
Thanks for your note, I'm improving just a little bit but my Gallbladder test the Hida Scan and both liver and Gallbladder ultrasound is normal.. I have this internal heat that moves around my body sometimes it sits in my chest and lungs feel congested, later it goes in my back and suddenly kidneys will bother some.. on in on... If I don't drink plenty of water I'm in trouble ... and cool my self off.. I know it's not beginning of menopause I already had the test for that and normal... So, I have to go back and tell them to test for Autoimmune desorders.. but don't know in which category will fall... I don't have all symptoms that they mention ... I already did a checklist on that too.... I hope all is well with you too feeling better.. Pearl
Thank you so very much for the information. I hope this Friday won't be so bad on him. I hope you are feeling well. Have a wonderful day! G
Thank you for the kind words and thoughts. I wish you the best!
You deserve a big bear hug!
Good luck with your gastro appt & hope you find a way to get him to understand what you are going thru. Not many understand so big hugs to you... How is your tens unit doing for you?
They don't say anything, they think is still some of the side effects of the medication... all tests come back normal.. I'm going to an Alternative Dr. I'm so tired of the entire health system.. I will have another and last test in July which will determine if I'm still UND the last reading was at the 5th month post tx.. and it said UND which I just feel all sympthoms of Hepc.. bloated stomach.. red palms. and constipation .. dry eyes... I don't feel normal yet.. Hang in there ok!!
You are in my thoughts and prayers. So do you have the classic dry eye syndrome? Hope that you have the symptoms of Lupus without the actual full blown disease. Great picture, when was it taken?
Hi back. I've been sort of busy lately, preparing for the possibility of being able to treat again and also, just with life.
I'm alright, just waiting for some info from nurse.... Susan
Just a quick note to say hi! As one med professional to another, I can empathize with the work situation...I'm a Paramedic with a similar situation...It's quite horrifying to think of the potential mistakes we could make if working while brain fogging...I'm at week 14 of 24 of txing...I'm hoping I can get right back to work after this is done...(((((((((((((((HUGZ))))))))) Keep your chin up... ~Melinda
You deserve a big bear hug! You must have a special TENS unit. Mine didnt have half units. I had mine on 5 and shoulder setting. Those migraines sound horrific. Hope you get some relief somewhere in the near future.
As for my shoulder... they wanted to put me under then manipulate my shoulder to break up the frozen ligament. They would be forcibly swinging it all over until they didnt hear the crunching of the ligament breaking up! Ouch! Then they would tube me up with a morphine pump. I would have to go to therapy everyday for a week to make sure it didnt freeze up again. I thought this was barbaric.
After refusing it I was told then it would probably go back to normal in a year of 1.5 years anyways. I decided to stick with that. It has improved a lot on its own.