Bach

[AlbanBerg]

Florida wife, (and any others interested in the tarvacin single infusion trial),
thought you might be interested in this info regarding clotting/bleeding/etc...


1.

[jmjm530]

Welcome to the forum. I can't really say whether or not your cramps are related to Hep C or not.

In any event, if you want, tell us some more about yourself and your treatment plans. Do you know your genotype? What did your biopsy say -- did it give you a stage?

This thread is pretty far down and probably won't get read much so feel free to open a new thread (topic) or post in one of the newer threads up higher.

-- Jim

[nyhepc]

way to go!!!  i didn't go that way and now find myself with a tx lapse while waiting for appt with new doc.
i learned that lesson about docs years ago where my kids were concerned, but for some reason, never applied it to myself. or maybe it was just the doc...not easy to talk to.
i wrote him a letter stating i wouldn't be returning to his office...he sent me one back stating he "shared my disappointment at not being able to tolerate tx".  I bet!!!! hopefully, i will be able to tolerate with  procrit and a little more neupogen...lol

[NYgirl]

It's just so aggravating.  I really like this guy a lot, he seems to know what's going on but he seems to have some problem in relating it to ME.  Which means bupkis if I don't have a say in what's going on you know?

His response to my question about the Riba should tell me something. After all, I do believe I should have a say in my treatment after all.  

I wish I could get paid so much for doing so little...I tell you that!  ;-)

[NYgirl]

WOW!  How totally misguided I was!  I was totally listening to corporate America on this one!
?

Just last night I had a huge glass of chocolate milk thinking a. good calcium and b. some calories that i need before starting treatment!

I mean I have a glass of chocolate milk or milk shake EVERY SINGLE DAY! Thinking of course how good it is for me!

Well...I guess I am switching to orange juice from now on.

Boy oh boy thanks for that article I totally really appreciate it!

Debby

[jmjm530]

Some people gain weight on treatment but most lose weight. I was at my ideal weight and have so far lost 30 pounds.

If a daily chocolate milk shake helps, don't rule it out. The whole milk think is controversial and some of those references cited are not surprisingly from vegetarian/political organizations. Sounds like you probably tolerate milk farily well since you've been drinking a lot of it.

Milk may or not be a good choice for adults, but again if it comes between drinking milkshakes or losing too much weight on treatment, it should be an easy choice.

There's a tendency for people starting treatment to try and change "everything" about their lifestyle right away. Some of the changes can be helpful, but changing too many things at the same time can often be counter-productive. You want to start treatment feeling as healthy as possible, not with your body making major metabolic adjustments. IMO the time for those major adjustments if you deem them necessary is months and months before tx, not the week before.

-- Jim

[jmjm530]

Forgot to add that my Alexander teacher is 85 years old, still works five hours a day, and recently told me that she loves milkshakes.

-- Jim

[friole]

Interesting article.  I buy organic milk, but haven't really thought much about all the other products I buy with milk.  Think I will stop at the healthfood store and buy some organic yogurt.  Not sure what to do about icecream -- is there any organic low fat, sugar-free product out there to try?  (I have tried to cut out all sweets, but must have my sugar free icecream at night.

[NYgirl]

I guess in all honesty I think I should moderate what I am doing in all areas.  As you can see I tend to really go hog wild trying to out think this disease. But it keeps my mind busy and occupied on other things besides the bad parts.

I doubt I could give milk totally up.  But I probably do drink way too much.

I'm the kind of person that rarely has any appetite to start with...so my doctor is worried about the after I start tx part.  

He never called me back yesterday so I am calling again today.  If he does not call I am going to have to cancel him out and get a new one. He seemed so good but when I have questions...I need them answered.

Even my MOTHER last night was like wow it doesn't seem like you are going to be getting enough of that Riba stuff - it seems like you need 1,000 to me.

Hey if my old mom can figure it - you know you are right.

[jmjm530]

Sometimes the only way you can get your questions answered is face-to-face. Maybe you should write everything down for the next time you see the doctor. If you don't get the right answers then, start looking around. (And one of the questions should be about how to reach the doctor. :) )  I delayed treatment several weeks from my original start date because I still didn't have my questions answered. I was upfront with my doctor about it. Said that I had a few questions/issues I wanted to discuss before I was ready to start. Treatment is a big decision and you want to start it right, with a doctor and treatment approach you are comfortable with.

-- Jim

[cuteus]

I buy organic milk as often as I can, quite expensive, but the brand I buy also donates part of the profit, so it makes it worthy twice.

[NYgirl]

Ah cuteus a great idea. I think that is the way for me to go. I really do and wouldn't have thought of it at all!  :)  You are such a sweetie!

jim I called again TODAY.  If he does not call by lunch I will call AGAIN.  (I can be obnoxious when it comes to uh MY LIFE!)

I want to go on 1,000 of the riba and i figure it needs to be approved NOW so I can start. I have to see him two weeks after i start treatment...so that is too late. I understand he is busy in his GI little world with patients but...if I can't ask a question of the man what good is he to me?

[jmjm530]

Good luck. I know this isn't easy. What I was suggesting before is
delaying your treatment start date until you had an opportunity to talk to your doctor and get all your issues resolved. Even if this means waiting until your appointment in two weeks. I say this because sometimes it's hard to get everything answered on the phone -- you usually have three minutes at best.

That said, if they simply won't call you back, that says something and I'd probably think about shopping around. My only advice with doctors is don't drop one until you found another you like better. And sometimes that's not easy. LOL.

-- Jim

[NYgirl]

Thanks for your help!  I too was just diagnosed (about a month and a half ago) and it flipped me out big time of course. NO symptoms so it was like huh?

I am very intersted in nutrition it seems like it has to play some part in being healthy and using our own immune systems to help fight these bugs crawling in us!

[sindog]

I joined this forum a couple of weeks ago and read all time. Great job.
Anyway, I just got my biopsy results and am visitin the dr. in Oct. I also had a bad experience with my hometown dr. and am traveling to another. I get cramps in my legs and feet (maybe not the same?). I live in wyo and am kindof a podunk, but what did your dr. say?

[jmjm530]

I'll also add that being intimately involved with treatment doesn't necessarily make you a "favorite" at the doctor's office. LOL. In most cases, they prefer you to be obedient souls who come "in and out" on their schedule and follow their recommendations without a peep. And it sometimes can be a fine line between "negotiating" and pissing them off which I'm sure I've done at times. To me, it's worth the risk, but it's not a path everyone is comfortable with. There have been times I've "burned" through one doctor and then had to move on. LOL.

-- Jim

[NYgirl]

ACK he just called the ONE time I stepped away from my desk just about ALL DAY!  I called back and he's already gone in to do a procedure!  DOES THAT FIGURE!

I am going to start out easy asking him about my leg cramps that just started back up ( have not had them bad for YEARS) and ask if they could be related to my liver problems and then go in for the kill
a. rebetol dosage
b. "iron" ok in my vitamins?????
c. what are the "parameters for taking procrit"
d. CAN I have a 4 week PCR?
e. what will we do if I am a slow responder?

I think that is enough. Mostly I am curious about the riba and 4 week.  I'll get them in there first.

Wish me luck my friend - and thanks for all the advice!

Debby

[jmjm530]

Good luck! But knowing how little time you sometimes get them on the phone, I'd leave the leg cramps and iron to last. I'd start right with your riba dosage. Good luck, again.

-- Jim

[NYgirl]

Well guess what.  He laughed his AZZ off!!!  He laughed SO HARD!!!

He could'nt believe everything that I was saying and asking (I was reading exactly what you've told me transposed into my words).  For example I was like well the Nurse said I should take a multi but I am worried about the iron...the replicating factor of the virus you know? And he laughed so hard I think he almost puked. He was like no don't take the one with iron if you can help it I'm sure you are fine...

First I asked about the cramps just to start the convo...then I jumped in with the riba and he was like well it is weight based...so I went on about some doctors still using the mfg. recommended dosage and how i really want to kick these critters in the butt and studies are showing how important it really is in the first 12 weeks (and here he laughed so hard I thought I was going to lose him) so he said fine if you want to start on the higher dosage that is fine and I said we can always downward adjust later. So he calmed down from laughing and I said well if it messed with my hgb we can always start the procrit right away and it started him up again laughing so hard (you have to realize I knew NOTHING the last time he saw me and you remember my first posts???? NOTHING)

He said who is the doctor here did you go to school in the past week????

But I got my answers and he was very nice.

I told him the truth that I had done a LOT of reading but more importantly I had met some good people on a forum who have the same disease as me and I am in a good support group (the forum) and he was pretty happy.

I apologized for being such a nudge and he laughed and said oh no you are not at all, not at all.  so I think from now on he will take me a bit more seriously because thanks to you I had all my ducks in a row.

THANK YOU THANK YOU THANK YOU THANK YOU THANK YOU THANK YOU THANK YOU THANK YOU THANK YOU THANK THANK THANK THANK YOU!!!!!

[jmjm530]

Excellent. Sounds like you can work with him. And a sense of humor is always a good sign. But you better start calling him about your week 4 PCR at week 3, because it seems to take a week for him to get back to you. LOL.

-- Jim

[NYgirl]

Ah good thinking. I forgot to ask him about that!  But at least when I spoke to him he KNEW I knew what I was talking about (thanks thanks thanks) and I was clear and concise.  

When I told him about wanting the 1,000 I told him "seeing as I am a genotype 1 and not even that but the harder to cure 1a/1b" and you could hear his brain go "how does she know this"?

He was really shocked and I really loved it!

I will bring up the 4 week PCR at my two week checkup. He doesn't usually do them then (the NP said that they were not reliable that early on).  What do I tell him therefore that I need it for? What is that logic (so I can start practicing that speech now) heee hee hee.

Sign me Dr. Deb LOL

Thanks that was more fun than I EVER thought I would have with this disease. I think it made his day too. :)

[jmjm530]

Hope I haven't created a monster. LOL.

Seriously, you're doing fine and probably best to address the 4-week PCR and other issues in person.

I can give you a longer explanation of the 4-week PCR at a later time -- in fact the explanation is in one of my recent posts in a discussion between Cuteus' and myself.

But  I'd just keep it simple and tell "I'd like a 4-week PCR to see if I'm a rapid responder." Use those exact words and I'm sure you'll get a big chuckle. LOL. Then, if he hesitates simply say you're willing to pay for it out of your pocket in case the insurance won't cover it. Then, before he stops laughing, tell him you want Quest's Heptimax test or something with a sensitivity of at least 50 IU/ml.
If he hasn't thrown you out the door by now, you know you have a doctor you can work with. If you find yourself in the street, don't blame me -- I've been there. LOL.

Good luck.

-- Jim

[NYgirl]

ok i wrote it all down in my "notes" part of my journal.  that way I can't forget it or lose in these threads.

he also told me to just take a multi but no A or K in it (or iron said I was right when I mentionned the replicating).  But how in the world do you find a mutli with no A, K or Iron?

I guess I'll just buy a whole bunch of the things in the multi and take them or something.  What a mess.

[sunspot]

From NY girl.
He said who is the doctor here did you go to school in the past week????
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You could of told your Dr you

[v eggie dip]

wow NY Girl, you're quite the little spitfire...I guess the stigma of New Yorkers being aggresive is true  hehehe...You should change your name to Go Girl!!!

keep em on their toes!  Beth