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Vitamins During Tx for Sx and Liver Detox etc?

I want to go out tonight and get the RIGHT vitamins that could help me with the sx and also one's that could help with detoxing my liver and my immune system etc.  Anything that can help me with this disease! I start tx next week.

I thought it might be a good idea to start a thread where we could find all the relevant information in one place.  I know I've asked before...but some people in here are too weak to go reading every single thread to find the right info.

I was thinking tonight of getting at least C, E, Selenium, Garlic and Zinc.  I worry about the multi cause of the iron (which seems messed up cause of the worry of anemia but...)

Can anybody help list what would be beneficial and why?

Thanks so much to everyone.  The more knowledge I have the more I feel like I can beat this thing!

Debby

PS I am not talking about vitamins INSTEAD of treatment..just in conjunction WITH treatment.
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Avatar universal
It was some sort of CT Scan I am sure, bu tthey called a liver/spleen scan...

The radiologist said part of it's function was to determine chirrosis in the liver, and like I said mine was normal...What I was wondering, and correct me if I am wrong...You can be a stage 3 level 4 and still not be chirrotic, correct?

Beth
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Avatar universal
Lately I've been getting really bad cramps in my calves and into my feet (like they totally retract) KILLER.

Is this any connection to what is going on with me physically or just some strange wierd thing.
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Avatar universal
The three "scans" I'm familiar with are ultrasound, MRI and Cat Scan. They're all used as to look inside the liver as well as to screen for liver cancer. I alternate an ultraound or MRI every six months.

My guess is  you got either an MRI or Cat scan. It should be on the report. Cat scans have more radiation so it's not a good idea to get them too often.

None of the scans can replace a biopsy. They are all different from the new Fibroscan which some day may make biopsy obsolete.

-- Jim
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Avatar universal
are you familiar with the liver/spleen scan and it's accuracy? My results came back normal but I have no idea how inclusive the test was...
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Avatar universal
No. They're only three fibroscan machines in the U.S. currently and all part of a trial for FDA approval. One is with Schiff in Florida, one with Aphdal in Boston, not sure about the other. No injections, no radioctivity. No dye. Totally non-invasive.

-- Jim
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Avatar universal
question:

Fibroscan...you called this an x-ray scanning device...I had what they called a liver/spleen scan where they inject a radioactive material and track it on xray, is this the same thing as a fibroscan?

Thanks Beth
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90502 tn?1196364005
"Natural herbs and supplements" have to be checked out as carefully as any "approved" vitamiln or supplement.  Please remember that.  I learned the hard way.

I take an anti-convulsant for a seizure disorder.  At one point in my life stress was rampant, so I asked my GP what he would recommend thate was NOT a "happy pill".  He told me St. John's Wort.  I checked that out with my neurologist and he, too, said that would be fine.  This was about ten years ago.

After about one month on SJW, I had a seizure.  About a year later they came out with results of a test showing people who have seizure disorders should not take SJW.  To which I said DUH.

God bless -
Carolyn
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Avatar universal
That is great news!

If you could post the list of vitamins that would be EXCELLENT and exactly what I need right now.

Thanks so much for backing what my own office seems to think (except the Nurse Practitioner not knowing about the iron - idiot)
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Avatar universal
Hi again. That's Dr. Aphdal at Havard if I remmeber correctly? He is one of the top doctors/researchers in the field and his comments on the newer drugs is consistent with many others in his position. I believe the test he gave your daughter was fibroscan, an x-ray scanning device and not fibrosure, a blood test? Did he come out with an estimate on liver stage based on the test? Good luck with your biopsy. Do you have a list of the 8 multi-vitamins btw they recommended?

-- Jim
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94007 tn?1224762736
Just went with 18 year old daughter Amie to my hep dr in Boston. She is moved into her dorm just down the street!!!! How convenient, huh?  He is adamant about individualized treatment. She did not want a biopsy so had Fibrosure and an ultrasound and will be monitored every 6 months during her college years. He assured her that when she graduates what will be available to her is so much better than what is available now. He is one of the top researchers in the country and her Fibrosure test was in his clinical trial office. It was exciting just being there.  My biopsy is scheduled for October 5th.

What dr recommends is a multivitamin only - without iron, they have a list of 8.
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Avatar universal
It can be nasty, but it doesn't seem to taste as bad to me as it did when I was a kid. Patricia Bragg suggests adding raw honey to it.
I put 1 teaspoon in a full glass of ice water and stir well.
I even asked my doc about it, and he said his wife uses it regularly. He did tell me not to use more than once a day though. With the healing reaction I got yesterday after just my second dose, that advice won't be hard to ignore. My massage therpist (also a Reiki II) tried it and said she felt better from the first try and wants me to order some. In my humble opinion, the more toxins in the body, the harder the initial reaction. I also learned from reading various articles on the web yesterday, that there could be several "healing crises", not just one, as the body tries to heal old diseases and injuries-but each successive one should be more mild.
If you do try it, let me know how you make out, we could compare notes. Good luck.
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Avatar universal
Some docs don't return phone calls and you have to work though the PA or nurse. If they're too busy to return your calls, try working through the office manager -- nicely but persistently explaining your situation -- that you're about to start treatment and there are certain things you want to go over BEFORE treatment.

In my case, I correspond with both my doctor and PA via email. They invariably get back to me the same day, sometimes within an hour or two. I only ask them to call me if I think it important.

Not all doctors like this but it's worth asking for their email address and if it's OK if you email them (instead of calling) from time to time.

If nothing seems to work -- and you just can't get through -- I'd hold off injecting anything until the situation was resolved

-- Jim
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Avatar universal
When you mention that antacids have the opposite effect with the Riba.........does that go for stuff like dairy? Milk?

I dont know why I am asking that especially except when Ihave heartburn & dont have antacids a glass of milk will usually help.

Thanks as always over and over and over for your wealth of knowledge Jim.
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Avatar universal
I think the issue of taking riba with high fat has been taken out of context. The recommendation is to be taken with a meal (mainly due to nauseua) with a normal amount of fat content(due to absorbtion). I don't know about you but with my red counts declining and the way I feel, I'm pretty sure the ribas getting into my system.
I'm male 5'10", 170 lbs, little amount of body fat; and when I found out about my compromised liver function, I also found out my cholestrol was slightly elevated. Because of my physical shape and diet I was surprised. Then I found out there is a connection between liver function and cholesterol.
Also the issue of weight; the more overweight a person is there is a possibility that tx will not be effective. Combo treatment can also have issues with your coronary health, and a high fat diet certainly can't help that.
I think we all need to use common sense to maintain a balanced healthy diet, and certainly not to all of a sudden dramatically increase your fat intake for 6 mo or a year. The health consequences of that could have its own set of risk.
thanks for listening
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Avatar universal
I really can't stand fatty meats, but I take my Riba with a very high fat content yogurt drink. It's by Stoneyfield Farms which may be regional but they make a banana yogurt drink specifically for babies and it's loaded. The rest of the time I drink low-fat yogurt smoothies because I have osteoporosis and need to calcium load in order for my osteo meds to work. I don't think it is the calcium in antacids that cause the problem.
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Avatar universal
I've spent so many years staying away from fat that it's going to be a change.  I like the yogurt drink idea.  

I'm thin to begin with and can't really let too much weight get away either.  I dont start until next week but I want to make sure I get every single benefit that I can.

I am glad calcium doesn't appear to play a part because I figure I'll be needing that as well.  Women of course have to worry about that.
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Avatar universal
Here is some info I had come upon somewhere, sorry that I can't give credit to the source.  I do agree with the others that you should always run anything you want to add to your diet by your medical team.  I also saw that you were thinking about adding garlic and according to this article, garlic in the pill form isn't a good thing.  Good luck and Smiles, Sue

Some supplements and/or herbs to stay away from:

AVOID Gingko, Kava, Ginger, Garlic capsules (garlic in food is okay), Valerian Root, Comfrey, Germander, Chaparral, Gordolobo. They can all be toxic to the liver, even in small amounts. St John's Wart (an over-th-counter anti-depressant) can interfere with the Peg and make your treatment ineffective.
  

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Avatar universal
I just started take an apple cider vinegar cocktail the other day because I wanted to cleanse the toxins from my system-I feel that the toxins are settling in my muslces and joints and creating problems. ACV is a known healthful substance, used for thousands of years. I had to drink it when I was sick as a kid and it did help as it is anti-viral and anti-bacterial. There are some web sites where people claim that their HIV viral declined or went to 0 while taking it regularly, and then when they stopped, it came back. I don't know about any of that.
I can tell you this though: on my second day of it, I must have started to get some sort of healing crisis that is sometimes seen when the body detoxes. I had several muscle groups burn, old trigger points were twitching, some current trigger points actually responded to treatment when they usually don't, and I felt fatigue, etc.
I experienced this once before taking an herbal remedy that also cleansed the tissues. The first 3 days I felt terrible, then, I felt better than I had in 10 years. I also made sure I drank more water last night to flush stuff out.
I use the pure, unfiltered, kind from www.bragg.com , and it is also found on amazon.com.

John
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Avatar universal
Oh thank you thank you Fairy.  This is exactly the sort of stuff I need to know.  I dont know where I read otherwise but I was going to do garlic!

I am going to run it by him today. In fact I am going to keep calling until they get sick of me and call me back hahahaha!

I looked at St. John's Wort last night and thought that would be a good thing to get.  See that? How valuable your information is!
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Avatar universal
You go girl and make him pay attention to your needs!!!!
Let us know what you find out.  Good luck and Smiles!
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Avatar universal
I am going to check that out and ask my doctor.  Anything that helps wash the toxins out is sort of what i am looking for.  It sounds absolutely gross...but I am willing to do it!  :)
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Avatar universal
Well I finally got the Doctor's nurse anyways.  ON my two most important questions she told me the doctor would have to tell me (a. 4 week he usually only does at 12 weeks because the results are too early to tell? (b/s) and if I was slow responder would they up the meds or let me continue (she said probably not up the meds as it's weight based and I am already so thin)

But she did say

a. take a good multi and NOT worry about the iron it's not that much?  huh?

b. If i fit the parameters they will give me Procrit for the red blood cells and if the white freak out Nupagin(sorry dont know how to spell).  Some people take both.

c. I am going to be taking PegIntro and Rebetol 200mgs x. 4

I wish I got the doctor...but at least I know something now.  Sounds like he does this very often as she had all the answers straight on hand for me pretty much.

PS they did try to call me yesterday it turns out but they called my home - where I am not when I'm at work. So I feel a bit better now.

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Avatar universal
Yes, substituting "healthy" fats like olive oil, avocado, full-fat yogurt, nuts, almond butter, etc,is a good idea.

The reason my diet is so "bad" right now is because I suffered significant weight loss (30 lbs) at the beginning of treatment and am trying to maintain my weight by any and all means.

Milk is fine. The antacids I was talking about is stuff like tums, maalox, mylanta, gaviscon and things with magnesium, aluminum. I stil take them on occasion but again space them away from the riba. I believe they can affect riba absorption by about 15% which again may have no clinical significance but more and more keeps pointing to ribavirin as being the key to SVR.


-- Jim
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Avatar universal
Well, you got a call back and some partial answers and that's better than nothing, and sometimes that's the best you can get -- so it's up to you how far you want to pursue. My original NP didn't usually do the 4-week PCR either, but when I brought it up, said I really want it, she said OK. Just tell them that you'll pay for it if your insurance won't cover it. Really don't know how they can refuse you.

I'd also want something more specific regarding what "parameters" they use for Procrit and Neupogen intervention.

Only other comment is your riba dose. Forgive my memory but you're geno 1 right and if I remember correctly you're around 125 lbs?

In any event, usual dosing for geno 1's is 1200 mg/day (6 pills) if you're over 165 pounds and 1000 mg/day (5 pills) if you're under 165 pounds.

If I were you I'd nicely insist on the 1000 mg/day (5 pills). More and more evidence is mounting that riba, especially in the first 12 weeks, is critical to SVR. Right now my weight is 150 pounds, down from 176 pre-tx, but I'm still taking 1200 riba day.
If you were like 100 pounds maybe I could understand the 800 mg.

-- Jim
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