Vitamins During Tx for Sx and Liver Detox etc?

[NYgirl]

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.

[v eggie dip]

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

[NYgirl]

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.

[jmjm530]

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

[v eggie dip]

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...

[jmjm530]

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

[v eggie dip]

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

[PasoPerson]

"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

[NYgirl]

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)

[jmjm530]

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

[dancegirl54]

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.

[jmjm530]

Regarding the standard labs -- two weeks seems about average but it's not a bad idea to get weekly labs for the first month or so while your body is adjusting to the drugs. If not, at least try and get a CBC weekly for the first month to check your hemoglobin.

Also-- and I'm not sure how often they should be orderd -- make sure you do a thyroid panel periodically.

-- Jim

[jmjm530]

I believe Bdna is less sensitive than the PCR test. Some doctors don't think a sensitive test is necessary until week 12 so that's why they ordered the tests like that.

My suggestion is to get the more sensitive PCR test from the beginning because you get less information from a negative Bdna than from a negative PCR. For example, let's say your Bdna has a sensitivity of 600 IU/ml and you test negative. You could still have 500 IU/ml of virus in your blood but not know it.

Anyway, there're a number of PCR tests out there, but you want one that will measure the virus down to at least 50 IU/ml. You can also request the Heptimax test from Quest Diagnostics. It combines a senstive PCR with a test called a TMA and therefore measures the virus down to 5 IU/ml. This is a good test to get starting at week 12.

It's good that your doctor is ordering monthly viral load tests, I'd just ask for the most sensitve test from the beginning.

-- Jim

[GoofyDad]

Jim -
I have orders for bDNA quant test monthly for first 3 months of tx. Is it common to use bDNA then switch to PCR once undetectable?

BTW, my standard labs are every 2 weeks, plus office visits every 2 months.

Your input is most appreciated.  

[Forseegood]

Hi, I think I read that article as well, about the garlic pills. All I know is that garlic is a blood purifier and I eat lots of it, I make a mean pasta sauce with lots of fresh tomatoes, galic and oregano (another very healthy herb.) Garlic has a blood thinning component, and they recommend it to people with high blood pressure and women who are taking hormones that might make them prone to clotting. Conversely, they say not to take it if youre on blood thinning meds. In countries where a lot of it is eaten  (the Mediterranean diet for eg.) researchers have said that these populations suffer less from heart disease, high blood pressure, etc. I can't for the life of me think why the pills would be bad?  Although I've heard from many that the pills aren't half as effective as the real thing. Something I don't know? whatever.  Some of these studies and articles are better than others when you look at the control groups, dosing, etc. I say the same for the ones that are pro and con.

[v eggie dip]

where did you read that garlic capsules is toxic to the liver?

[Forseegood]

Good luck on your new journey! Sounds like you have the required attitude, that's important. As far as that "treatment nurse?" (if I have it right) telling you it's okay to take a mult w/iron, sounds like what she knows about supplementation you could fit into a bug's eye. Sorry to say it, but I think some people who are in postitions of authority pontificate on subjects they know little about, ego or whatever. You didn't mention any "anemia" issues or anything like that, and we hep c patients should for the most part stay away from iron supplementation, unless we're directly told to do so by a doctor because of some kind of treatment plan, from all my research. I'd certainly get a second opinion on that.

[jmjm530]

Thats it. Look the NP right in the eyes and say you want the additional 200mg of riba for the extra letter in your genotype. LOL.

-- Jim

[NYgirl]

HAHAHA HARD TO TREAT GENO 1/A 1/B HAHAHAHA

[jmjm530]

Oh and try and slip the words "since I'm a hard to treat geno 1" in there...that always helps when u want more drugs. LOL.

[jmjm530]

Good luck. The trick is to nicely tell them in an informed way what you want. Asking doctors questions often locks them in. Let us know how it pans out.

-- Jim

[NYgirl]

Jim, I am going to call right now. I'll even say that I've been doing what they asked and been trying to "gain some weight" so I would prefer to be on the higher, company recommended dosage in light of....as you said.  It can't hurt to try.  I am not going to be feeling good about 800. I really am not.

sunspot - I love milk too.  I drink more milk than most people do in a week in a day LOL.

[sunspot]

I take my riba with a half pint of whole milk for no other reason than I like milk. On weekends, I drink about 1 1/2 gallon of milk.

[jmjm530]

I find the best thing with doctors is to negotiate from an informed/assertive viewpoint.

I rarely would ask my doctor why I'm only being prescribed 800 mg/day. That invites an answer that you probably don't want, but more importantly it allows the doctor to formulate an argument that you have to rebut and he has to defend.

I would say something like, "The NP mentioned I'm slated for 800 mg/day, which I understand is based on some of the newer weight-based studies. However, I know a lot of doctors still prescribe the manufacturer recommended 1000mg/day dose. I'm really eager to get rid of this virus and would like to try the higher dose initially, especially in light of newer studies showing how important ribavirin is especially during the first 12 weeks.  If I can't tolerate the higher dose, we can always make an adjustment later."

In other words, know where you're going in the conversation. Then all he has to do is say "OK" which is the easiest thing for him to do and therefore the most likely.

-- Jim

[NYgirl]

Wow what great info.

I am actually cutting and pasting it into word.

I am having my eyes examined on Monday which is why I wont be able to start tx till next Friday (darn).

I do weigh 125 and will find out why such a lose dose of Riba and ask if he can prescribe me more. Although now I have already been approved by the insurance company for just that dose.  DARN!  I wish I had a chart to send him showing how much I need and why I need more. I mean I haven't lost any weight YET so give me more!  If the Riba makes the difference I need more I need to figure out a way to convince him of this.

I will have to call and leave a message. I need an argument on why I need more than the 4 pills.