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Various questions and comments

I have been following the "thanbey" debate with interest and (brain fog) induced confusion. Someone please tell me, is this a "patient to patient" forum or not? That is what it says at the top. Is this forum for pateints and families dealing with hep C? Just patients? Or anyone with an interest?

Other question? In general, do most of us on tx feel somewhat miserable most of the time? I am up to shot 10 tomorrow, and at best I feel only a little bad and at worst I feel miserable. Too many different sides to go into, but is that the general experience? I am a little worried because weird stuff is going on with my stomach almost all the time since I started tx, and sometimes I am in a fair amount of distress in this area.

I am also grumpy, irritable, sad and at times just pissed off. I KNOW this is the meds, because this is not how I usually am. Also I worry about hair loss much too much, and am now checking the sink every time I comb my hair which is less and less often.

So, in summary, I am not having fun, how about all of you?
31 Responses
Avatar universal
What kind of weird things with your stomach? I was just about to open a new thread asking about mine stomach problems when I read yours.

I woke up Thursday morning with a extremely swollen abdomen and liver area. Called by hepatoligist, he had me rush in for blood test. All liver enzymes came back ok, blood levels low but nothing really serious. Went in this morning to urgent care and they said that I had a fluid build up in abdomen possibly swollwen spleen. Said my thyroid could be acting up from all the meds I'm on. Has anyone else experienced anything like this? They won't do anything else for me here (Tennessee) because my hepatoligist is out of Michigan. Unless I get one here (which my insurance won't cover) they won't treat me for anything that would be remotely related to my liver.Guess it is time for another trip to Michigan.
Avatar universal
I've also been to emergency since on tx with pain in upper abdomen and behind breast bone area.  My abdomen was swollen and the xray showed some fluid and air in the small intestine.  A few days later I had a barium xray of the small intestine and there was no blockage.  Just a few days later I got a call regarding my blood work, thyroid levels were almost zero.  That's an indication the thyroid is producing too much hormone.  After further testing is was determined I have silent thyroiditis and my sx are more from the hyperthyroid than tx.  I've had extreme shortness of breath, HOT forehead and face, irritability, muscle weakness, fatigue, etc.  I think I just got a double whammy for a few weeks.  With beta blockers, anti-anxiety rx and ADs things are starting to lighten up a bit....and then there's the pegasys shot last night.  Anyway, your message made me wonder if there is a connection with the swollen abdomen and thyroid.  I also have GERD and thought my problems were digestive, but now I understand thyroid and digestive problems are related.  Did they check your TSH levels?  It's something to keep an eye on.  I hope you get this resolved and are feeling better soon. caruu  PS.  Interferon is known to aggravate/cause thyroid problems.
Avatar universal
Having jumped in to the last contremps feetfirst, I've been trying to take an evenhanded look at this one. When I first saw Thanbey's first post, I wanted to suggest that she not publicize her web site here, but held off. Others wrote in how they liked her site and I thought I was wrong and then the situation erupted. I think people can post whatever as long as they're (relatively) civil, but if they make statements that contradict general knowledge, they need to back them up. People with other agendas need to be reminded that we are patients, not grist for the mill. Not necessarily Thanbey, but others with herbal cure sites, attitudes towards someone or other, etc.  

All our nerves are rawer than they might be, but so far this argument has stayed pretty civil. Whether we're a family or simply passengers in some really large lifeboat, there's people ya like and people ya don't and people you'd rather simply shut up. And people you want to know better...

Don't leave Dallas. Take a deep breath and remember that we're all here to help each other and the rest of us would be dimished by your leaving. Don't let the squabbles get you down. Remember not to feed the trolls. And skip the posts by jerks.
Avatar universal
I will be outside with you on March first planting a tree!  I agree with you that we need to honors ourselves and all our friends here in the forum.  Thank you for the positive suggestion!
Avatar universal
No no no. don't leave. This is not worth your leaving. Your kind words have many times made my day as I am sure they have for others. I also don't like the thanbey aganda and have found it quit depressing but it's not worth leaving over. Hope your sticking around. Look at all the poeple who replied with factual scientfic data. That is how this site will stay a place for support for people with HCV and those on tx or investigating it. See you around. LL
Avatar universal
I think that's a great idea.
Avatar universal
I can not encourage you too much on the colonoscopy, that prep was NASTY.  There was nothing left in my intestine or stomach, food undetected.  But really You should, you need to rule out intestinal disorders.  They did find a hiatus hernia in my case, not shown in upper GI series.  I heard the prep nowadays is not what I did 6 yrs ago.

Get the new referrals.  It will get better.
Avatar universal
Thank you all for responses. My stomach problems have been in the areas of pain, and I guess intestine/colon. I USED to be fairly regular. One half a cup of coffee, and I was good for a day. NOW, I don't go for a week, OR I have to RUN to make it on time, my stools are light, I can't "push" much to eliminate. I have also been to the ER, because of lower left side pain; and now need a colonoscopy and endoscopy. To make matters worse, in a firt of riba rage I tore up the colonoscopy papers and canceeled the tests. I dread the thought of drinking that stuff and then being in the bathroom all nite, I cannot fathom more stomach pain and weirdness right now.


DALLAS, don't leave. PLEASE, we, the patients NEED you and each other. In the few months I have been here it seems those that cause the most problems are NOT the patients. Ring left because of someone who was NOT on tx, this thanbey is not on tx and I really come here ONLY to share with and learn from other HEP C patients. There are many other places we can search for info; this forum is for US!
Avatar universal
Dallas...That is so wonderful that you and your husband did that!!  By donations...we will only be able to help stamp out this disease!
Ok...Sides...Yes I do have stomach problems from time to time but lately..that has let up!  Everyonce in awhile I'm getting a bad headache hmmmm...maybe like once every 2 to 3 weeks and have yet been able to find something to knock it out before it makes me sick.  First 6 weeks...I had chills alot in evening but lately that has gotten better.  I guess just now noticing I get tired so easily but hey...I'm hoping this will now level out and I can get through it if it stays like this.
Donl...I liked that!  Its like a journey and we are drawn to others for different reasons more so then others.  One thing nice about this board is pretty even keel for long periods, then a little whammy thrown in there and then irons itself out.  I guess that is life though!
Avatar universal
I am glad you took a deep breath and sloowwwly released, and deciced to hang in there.

I am glad that Indy and vicky and others have the gift of words and keep our emotions balanced.  

I am glad that rev  and other knowledgable people keep our wisdom updated.

Audrey: that is the summary of the tx for a lot of us; not feeling like ****.
Is not necessarily that we feel good, but just not like ****.   Dark moods weeks (they pass), irritability and intolerance (they become manageable), anemia(treatable), hair loss(cut it, I was told).  On and On but you learn to live with it and manage.  I must say I do take Vicoprofen for that general malaise/achy feeling and  it helps to tolerate these meds.
I did have periods of intestinal incontinence and cramps, now I have tummy ache for a week (after shot 36). Sx are unpredectable as when they come and how severe, but don't chuck it all to the meds.  Do your research and mention ALL symptoms to your doc as you never know if it is the meds or some organ that has decided to act out on these meds.
Avatar universal
I also have that kind of hernia. And a cyst on my one remaining ovary; discovered because of my trip to the ER with lower left side pain. I had a stomach scan and (shhh) could not get all the barium down. I KNOW I need these tests but I just don't want to do it yet. I am so sick of being sick. And a bit sick of docs, hospitals etc...

On a positive note, I spent the day with my new grandson yesterday. There is nothing like cuddling a baby to  remind me what I am fighting for and why. I have custody of my older grandson and plan on just enjoying and spoiling the new one. AND being around to see them both grow up!!

I became a grandma at 41, it is not too much to ask to see great grandchildren, is it?
Avatar universal
Nope, Audrey it sure isn't too much to ask.
Avatar universal
Great Idea and thinking about either redbud or yes I love Dogwoods also!
Avatar universal
I'm glad you're staying around too.
Avatar universal
Can you please give me or direct me to info on tissue after tx. I went to ask jeeves, and by golly, there you were!!!! Thanks for being here for us. Your input means a lot to me! Love, Cindee
Avatar universal
Befudd....haha that is funny...No..for once I was being totally serious...Redbud!
Dave..I feel so bad for you as you seem to have some very rough times and then your postings are always so uplifting and helpful! I honestly don't know if I could go what you have been through and then always be so positive!
Dallas...You are NOT going anywhere!!!  We would miss you and I know you are somewhere in this big state of TX..hahahaha Might have to do a manhunt here!
Avatar universal
You hang in there too!  Thanks, caruu
Avatar universal
Allow me to speak as someone who's not seeing the world through the brain fog of treatment:

I'm stunned by the gauntlet that some people have to pass through to be accepted here.  A foul-mouthed troublemaker like Ring-a-Ding passes muster, but Thanbey is attacked because of paranoid suspicisons of what her agenda MIGHT be. People have compared her to Hitler and Al Capone, for God's sake!

You know who looks bad in all of this?  Not Thanbey, that's for sure. Those of you who have attacked her look petty, paranoid, ungracious and mean-spirited.  Her website solicits funds -- SO WHAT!  We should be grateful that someone out there is trying to raise money to bring awareness and a cure to this damn disease.  

I've read every post she's added to this board over the past week and not one appears to me to be inappropriate.  In fact, she continues to be polite (I know, I know -- the hell with good manners) in spite of the appalling rudeness display by several of you.

In the six months since I was diagnosed and began visiting this board, I'm amazed at how many fights break out on this board over the dumbest things.  One poster called a newbie a "*****" on Christmas Day because she asked the same question too many times! If this is what being on treatment does to people, I think I'll put it off as long as I can.

So go ahead....attack Thanbey all you want.  By doing so, you say  volumes about YOUR character (or lack thereof) than you do about hers.

Susan
P.S.  Just for the record for you super-paranoid types...I don't know Thanbey.  Never met her, never saw her website, never contributed to her organization, nor has she paid me to say this.
Avatar universal
Re: Who looks bad? I would say that would depend on who does the looking.

I am not trying to stir the pot but go back and read the ORIGINAL exchanges with thanbey and see it was all very polite. She was asked some questions. That's certainly fair isn't it?

We were discussing antifibrotic effects of interferon and a statement Dr. Douglas Dieterich made. thanbey said Dieterich was wrong ... I asked for some proof he is wrong. She had none.
Avatar universal
I had those same symptoms from ascites building up in my abdomen when my liver was failing. Get a Dr. to do an ultrasound ASAP. This is only 1 of many things it could be, but I'd be worried.   Love, Joni
Avatar universal
As a point of clarification, I did not say Dr, Dietrick was wrong. You have said I said he is wrong. That is quite different.  

I am saying he is making a statement that is outside his own discipline and area of expertise. The neurovirologists who are studying this question (and I gave you names to look up more information if you wish to) have not definitively said that and are skeptical due to the size of the pegylated molecule (44 kd for Roche and 38Kd, I believe, for Schering Plough's product) and the nature of the blood brain barrier.

I am not inclined to argue. Our medical director (Aronow) is a first line neurovirology researcher at UCLA and the NIH. He tells me that the key may be to draw the virus out of the brain and into the cerebralspinal fluid where the pegylated molecule can go.

Research on this is very preliminary at this point. NO ONE can say with any certainty what the research will ultimately show. It is premature for Dr, Dietrick or anyone else to be making statements that indicate anything is known with certainty.

I urge you to write or speak with him yourself. I doubt very much that he would take offense, as you have, to what I have stated above.

I have compiled a few articles you may wish to read in order to start your research.

Accurate information is the goal. Perhaps you might come back to the board with what you find.

Avatar universal
I wrote Dr. Deiterich a few days ago and asked for clarification and for him to provide some references that prove Interferon does cross the blood-brain barrier; I will post his reply if he answers.  

Below are links to two articles regarding the blood-brain barrier issue that seem to refute Dr. Dieterich's statement.  This following article says "Interferon is not thought to readily cross the blood-brain barrier," and can be read <A href="http://www.hepnet.com/nih/dusheiko.html">here.</a> (Under the Neuropsychiatric Side Effects heading.) The second one states Interferon does "not cross blood-brain barrier," and can be read <A href="http://hepatitis-c.de/antivira.htm">here.</a> (Under the Pharmacokinetics subheading for Interferon.)

G
Avatar universal
Thank you. I've done the same.
Avatar universal
I look forward to Dr. Dietrick's reply.

thanbey
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