I have never heard of not using milk thistle while on treatment. Could that have anything to do with being a non responder, and having my VL double during the first 12 wk of tx.
I have read many of your post and you seem to really be up on everything. I am trying to catch up with you, but I am afraid it will take me awhile. Thank you for all the information you share and for the time you give the rest of us.
I had been using milk thistle prior to treatment. It was one of the supplements that my doctor, the nurse, all made a point to tell me not to use it during treatment. It interferes with the interferon and is definitely not to be used when doing tx. It is great to use to protect the liver when not on tx.
900 mg a day?I think that that is the main problem. The Health food/ supplement purveyors recomend these low amounts because somehow they are afraid to recomend larger anounts.
I am not a doctor and am not dispensing any kind of medical "advice" It seems funny that people recomend $10 a month worth of milk thissle when the stuff is considered very safe for 1000 years. on the other hand I hear the tx the doctors use routinely fries your thyroid. I personaly use 1800 mg of milk thissle but I also use Sam-e, colorius versicolor reishi and cordiceps mushrooms.(the mushrooms are considered very safe(but expensive), artichoke extract NAC, alpha lipoic acid, and I juice a lot. I am begining to feel Way better and I have Cirhosis. now if Your Blood numbers begin to get better, Is it not a sign that your liver is improving? i dont know, but it seems reasonable to me. 2 months ago I had a major, major episode where I almost died. Now I am running after the bus on third ave (I caught it) the Bus.
I think that there is something to the herbal stuff, and my test results will tell jme something about this theory when i go to my next appointment. If Spleen is smaller, platelets are higher and asl etc look better, well what will that mean? I know all that I am saying is anecdotal, but think about the money people are willing to spend on the doctor drugs versus herbal/ natural stuff.
funny, since the "supplement" industry is a multimillion industry. I guess it is our choice who gets our money.
better numbers do not mean your liver is getting better, it still has a virus using it as a breeding ground.
as I said before, many of us have normal readings throughout the infection period, but still getting attacked by the virus. only a biopsy will tell.
The tx does not routinely fry the thyroid and I wish people would not generalize so widely based on a few experiences, it is misleading.
Thank you for your comment. I keep finding more and more reasons why I might have been an non-responder. Milk thistle, O'douls, reduced rbv due to < hemoglobin levels, using peg-intron instead of Pegasys. I have been visiting with a friend in California who does liver transplants and he has been visiting with a Dr. Pockros and they are recommending I re-treat. I like my dr but I don't think he is upto date on all the newest treatments. My dr has agreed to work with Dr. Pockros and do whatever he can to help, so I am hoping this will be a good combination. What do you think.
Now, I am not sold completely on "alternative" medicine and supplements (and that is exactly what some things are,= supplements not "supplements" since without a doubt some mineralsand vitamins need to be suplemented as our body does not produce enough esp when the body is under stress)but I am not Throwing myself at the feet of the genius Doctors who oftentimes act flippantly and rudely towards their patients. often these doctors know very little about nutrition and they dont see the connection between health and food intake.
yet the same Doctors admit that the milk thissle interacts and 'disrupts" the results of milk thissle. Gee if a Substance can have such aa powerful effect on the livers metabolizing their $3000 a month drug, the substance must be able to alter body functions *somehow*, not? The research I have read on Coriolus versicolor (psp) is that it can tripple the NK cells in the body. The Doctors Disdayn the use of herbal stuff because it takes POWER and MONEY away from them in My opinion.
I hope something like VX 950 will come into play soon. The present combo therapy scares me. again I ask, What percentage of post TX patients experience long term side effects/
Hawk -- It seems from reading this board that a number of non-responders have had good results retreating with different forms/combinations of tx. Hopefully, others more knowledgeable about this than I will respond. Best to you.
Cuteus and Rev -- I was very, very concerned about the thyroid loss after coming to this board earlier in the spring. As some of you pointed out, the issues with thyroid appear on a board like this frequently but it is not an indication of overall frequency in treating with tx. I did question my doctor and would not commit to tx until he researched and gave me an idea of how many have thyroid issues. He came back about a week later and told me that 5% of people on tx have thryroid problems. Of great concern also to me was the retinal damage I had read about. He told me that the percentage having retinal damage was 1% but his experience seemed to suggest this is directly related to length of time on the tx.
I am getting very frequent tsh tests done. I also am doing a yoga posture that is supposed to support the thyroid. Hey anything to feel like I am helping myself!
Here are some web sites that will help you understand the properties of Milk Thistle and the dosages...
I use a derivative of Milk Thistle called Silybin Phytosome's. It has been shown to have much better absorption and protection..
I also read a post that taking Milk Thistle during TX doesn't affect interferion...But may affect other meds prescribed while on TX...<B>Who Posted that...Cuteus??</B>
<a href="http://www.liversupport.com/studiesindex.htm">Milk Thistle Clinical trials Web Site</a>
<a href="http://ultrathistle.com/info4.htm">Dr Andrew Wells Comments and Others</a>
Milk thistle is my friend. I like about 3-4 400mg caps a day.
I took it @ much higher rates during tx. I cl'd by day 18 May 2002.
SAMe is the bomb! Mood, liver, memory and sex drive all @ once.
I take what I can afford, betwwen 900-1200mg daily.
Since achieving SVR-if not a cure-I've eliminated most dairy, meat, processed foods, fast foods, trans fats, corn sugars, and this summer most cooked foods. Juicing and blending instead.
I figured that if I'm real careful, even though I almost bled out and saw the light-near death experience-went into liver failure due to cirrhosis, etc-if I'm real careful I can have another 25 good yrs or so.
I've never heard that junk about not taking milk thistle 3 yrs ago and its been a hippie staple for yrs.
The one thing I still can't live w/o is green tea w/ginsing and honey. I've carried my own tea everywhere in the last 3 yrs-Asia, Mexico and Europe, my tea goes w/me!
My sweetie was just taken off of treatment (PegIntron) after 9 months because after his 3, 6, and 9-month PCR tests it showed that his viral load was climbing back up. Not very much of an increase but an increase nonetheless. He tried talking to his doctor about switching meds or increasing the riba but to no avail. We found another doctor who is willing to switch him to Pegasys. He hasn't started treatment yet. His former doctor told him that he could take the milk thistle while on treatment. Also, his new doctor said he could take it, but I think this time around he will not take it just to see what happens. His new doctor, who seems to be more savvy about hepatitis C than the former one, said that treatment on a long term basis is good for the liver whether there is a complete cure or not. He said he had done an informal study with his 1a heppers and the Pegasys seemed to help a little bit more than the PegIntron.
if you are genotype one, I would not chance taking the milk thistle while on tx. it is hard enough to clear without adding possible "shields" that will prevent the meds to reach the liver. With a low VL, I should have cleared by wk 12, but did not. was it the milk thistle? I don't know...why chance it?
Thank you for your kind words. I really don't consider myself the expert on any of this stuff, but I have had some good results using Milk Thistle and other supplements. My simple rule of thumb is to always research everything carefully. Desperation can make us vulnerable to trying things that can potentially do more harm than good.
I did a blood test 2 years ago and my results was my liver count was a little lower than normal.. Doctor seems to think its normal because I'm asian and eat asian fatty foods... Should I worry? I bought a bottle of Blackmore's Milk Thissle... Is this safe for me to eat?....
I live in australia and my doctor said taking milk thistle is fine during tx,he even said there was research...but now u have me worried cos iv been taking milk thistle all the way through,thankfully on low doses.i am so annoyed how all different docs tell us all different things...which 1 is right?all i know is that im not going to take them anymore just incase.
They are even thought to help reverse the damage done from eating poisonous mushrooms, such as Death Cap (Amanita phalloides) or from carbon tetrachloride, both of which destroy liver cells and usually cause death. When Milk Thistle seeds are used within forty-eight hours, the survival rate is said to be almost 100%.
I tried milk thistle for about 3 years.
It did not make much difference in my ALT/AST or well being. I stopped it a few years ago.
I have done MORE for myself by taking 2000 IU Vit D and 1000 mcg B12 a day and getting plenty of sleep.
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