That is enough!! So far as i have read, Dori has not suggested that anyone should stop tx; nor advocated that people should exchange conventional tx for any herbal products.
Whereas it is true that there are people who are willing to exploit people who are unwell, and this can make folks sensitive to the idea of herbal remedies etc, i think that the way Dori has been treated here is unacceptable and that kind of behaviour will not be tolerated on the Forum.
It is inevitable that people will disagree. If Dori has been advised to take Milk Thistle or any other herbal remedy, that is between Dori and her medical team. At the very most, people may offer their opinions on the value in doing so, but should respect that it is an individual choice!!
This forum is NOT an arena for verbal attacks and it will not be tolerated.
Heather.
virginiap said
Oct 28, 2010
This is my last post.
I'm posting in the "Treatment Intolerant" forum. That means that I am treatment intolerant.
My posts are directed to others who have also have had bad reactions to the interferon/ribaviron treatment.
I am not advertising herbal remedies nor promoting them.
I was only stating what happened to me, why it happened to me (because I was treatment intolerant) and stating that I have chosen to use two different supplements to help keep my liver clean.
This is my choice and my life and I never, not ONCE, suggested to anyone to stop their treatment and substitute any herbal treatments. Not ONCE. Several times after being accused of doing that, I stated quite clearly that it was not at ALL my intention to state that.
I find some of you to be quite rude and I don't like it and I don't have time for it. I'm still recovering and fighting my own battles with my health.
I was trying to be a kind person to address others who are treatment intolerant such as I am and suggest some means to help them out since the treatment for some of us makes us sick. I almost died.
That's all I have to say.
I was nice to everyone and got accused of stating things I didn't state.
I am not a doctor (I repeat... had you read my posts you would have seen that I've typed that already). I am NOT suggesting to anyone any substitution of the interferon/ribaviron treatment. I don't know how many more times I can say it before it's read and understood.
You can call my posts BS and you can attack me for saying things I didn't say but that's your problem, not mine.
Is there an email address please to the administrator of this site?
I would like not only my membership to be removed but I would like all of my posts to be removed.
You people have been quite mean to me and I don't appreciate it.
I don't want my posts here and frankly, other than having met Medusa and Dee, the entire experience of posting on this site has been ridiculously taxing.
I don't like conflict. I don't like to be accused of saying things I didn't say. And I don't like people who are mean to me.
I'm done with it.
If anybody knows the email address of the administrator, please contact me and let me know or post it here on this thread so I can contact him or her and ask her to delete my membership from this site and remove all of my posts.
Thank you.
.........
Oh and that's like really fricking mature to cut me down because I said I was a published writer. I write copy. I write website text and brochures. It's what I do for a living. They pay me and everything. I also write poetry and perform poetry and have had my poetry published in various literary magazines as well as several collections of poems which I SELF published. Maybe my poetry is crap. Who the hell knows?
What type of person is so fricking rude that you have to insult me because I mention the fact that my writing has been published? I get PAID to write brochures, website text, copywriting for many companies.
My point was is that, as such, I THOUGHT my writing was clear. Clearly either I was mistaken and I'm a terrible writer you mean and deliberately ridiculing people just find it amusing to make fun of me.
I think it's sad and I think you are quite immature and I'm very very very very very (terrible writing, btw, to use the word very at all, let alone 5 times.. LOL)... but.. I very disappointed that I ever found this site. I wish I'd never come here.
After all I've gone through, to have to deal with people on the fricking internet attacking me and ridiculing me for no reason whatsoever, putting words in my mouth ....
All I have to say is you should be ashamed of yourselves.
If I can find a way to delete my posts or get them deleted, and get my membership OFF of this site, that's my plan.
Does hepatitis C cause people to be rude or what the **** is it? That's what I'd like to know.
-- Edited by virginiap on Thursday 28th of October 2010 05:50:01 AM
Mike said
Oct 27, 2010
OK James, let's play nice. Though I've been biting my tounge a little since I posted after her 1st post I did try to hide my "you've got to be sh_tting me" face, and hold back a little.
I guess it's easy to see why Dori left in the 1st place. I mean her being a published writer and all. Oh along those lines I've been meaning to mention the fact, I wrote a "letter to the editor" of the local newspaper last month and it was published the next week. At any rate I don't think she's been respected as she should be. She's quoted many doctors and copied several websites for us to visit. The problem I have however is the fact the FDA doesn't bother to take the time to conduct trials on these herbal treatments. And I don't blame them for not wasting their time. Though many people will tell you the FDA is in the pockets of the chemical and drug companies I still find them more trustful then most massage therapists.
However another problem I have is in spite of my responses I really am having a problem getting involved with the whole BS herbal medicine scene. I keep hearing crap regarding garlic for cholesterol, St John's Wart for Depression, now milk thistle to lower the viral load for Hep C. My Dad wore copper bracelets for his arthritis. He swore it helped. I said he was full of it.
Apparently Dori has had to deal with our style of ridicule before. She found it necessary to leave the forum. Now I'm not one to start a rift on these forums and won't normally go off on people, but this is twice I've found it necessary to defend myself because someone either jumped to a conclusion without having the correct facts or tried to blow smoke up my _ss. And though I've felt insulted both times I also have been willing to give the person doing it the benefit of the doubt.
One of these people was Brendan and I feel bad about the way I responded. Neither one of us actually knew what the cause of my issues were with my sense of balance and the effect the sinus infection was having on my eyes. Brendan was correct in saying I should see a physician but was just abrasive enough to get my irish up. Believe me when I tell you I miss Brendan on here daily and hope at some point he'll return. I've discussed this with Brendan by means of a private message.
Dori on the other hand came on here and immediately made statements regarding milk thistle. Up to this point in my life anytime I hear someone start talking about herbal treatments it raises a red flag. And I think rightly so. These treatments seldom have the proper backing to prove their claims. I don't know Dori and after the last couple days don't know if I should spend time attempting to know her or not. I know she became defensive the minute someone questioned something she said on the forum and apparently, based on how quickly she became defensive, has been here before.
At any rate it's time to stop with this nonsense and move on.
Your friend, -Mike
James10500 said
Oct 27, 2010
Virginia,
You recommended the use of Milk Thistle to treat Hep C, you said you had an allergic reaction to Neupogen. Hep-Central is run by a massage therapist. The problem with Silymarin is that there is no control over the companies that sell it. There has been one Spanish study that suggested the Silymarin molecule in it's purest form may help fight the Hep C virus, but the problem is that's not what you get as a consumer. This is according to my Doc, here is his bio. Who to trust someone who recommends garlic and Tai Chi, or this guy decisions, decisions.....hmmm.
Might I add that if your Doc friend in Hawaii knew anything about Hep C he'd know it's very common for VL to increase and decrease, but he's attributing it to an HERB....puhlease. No one is putting words in your mouth. You're the one who is putting "alternative therapies" out there.
Education
* Medical School: Cornell University Medical College * Internship/Residency: 1976- 1979, Creighton University * Fellowship: 1979-1982, University of Colorado School of Medicine
Honors and Awards
* Phi Beta Kappa * National Institutes of Health Clinical Investigator Award, 1983 1986 * American Gastroenterological Association Research Award, 1983 1984 * American College of Physicians Teaching & Research Scholarship, 1983 1986 * Polycystic Kidney Research Foundation, Research Award, 1992-1993 * Best Doctors in America Award, 1999 * Fellow, American College of Physicians (FACP), 1999
Faculty Appointments
* 1982 to 1988 - Assistant Professor of Medicine, Division of Gastroenterology, University of Colorado School of Medicine, Denver, Colorado * 1988 to 1996 - Associate Professor of Medicine, Division of Gastroenterology, University of Colorado School of Medicine, Denver, Colorado * 1988 to 1995 - Director, Gastroenterology Fellowship Training Program, Core Director, GC/MS Laboratory, Hepatobiliary Research Center * 1996 to Present - Professor of Medicine, Division of Gastroenterology, University of Colorado School of Medicine, Denver, Colorado * 1990 to Present - Director, Section of Hepatology, University of Colorado School of Medicine, Denver, CO
Committees and Responsibilities
* 1992 - Present Training and Education Committee of the AASLD * 1995 - Present Member of the Data and Safety Monitoring Board for the PBC Ursodiol Methotrexate Placebo Study (DSMB /PUMPS) * 1996 - Present Board Member, American Liver Foundation * 1999 - Present Co-Chair, Ancillary Committee, NIH-NIDDK 98-4 Hepatitis C Clinical Trial * 1999 - Present Steering Committee, NIH, HALT-C Clinical Trial * 2000 - Present Exemption Committee, NIH, HALT-C Clinical Trial * 2000 - Present Recruitment Committee, NIH, HALT-C Clinical Trial * 2002 - Present Clinical Outcomes Committee, NIH, HALT-C Clinical Trial * 1999 - Present Hepatitis C Caring Ambassadors * 1996 - Present Executive Board Member, American Liver * 2002 - Present American Society of Transplantation Awards Committee * 1997 - Present Chairman, Transplant Outcomes Committee * 1998 - Present Member of the Clinical Practice Committee * 1996 - Present Chairman, Association of Transplant Physicians and Surgeons * 1999 - Present Faculty Committee to Review Infrastructure Support for Clinical Research * 1991 - Present Chairman, Patient Selection Committee for Liver Transplantation
-- Edited by James10500 on Thursday 28th of October 2010 02:01:52 AM
-- Edited by James10500 on Thursday 28th of October 2010 02:29:32 AM
-- Edited by James10500 on Thursday 28th of October 2010 02:30:03 AM
virginiap said
Oct 27, 2010
James said:
Hi Virginia,
Thanks for the link about Milk Thistle, but I'll stick with the Peg and Riba. Peg and Riba have cured millions of cases of Hep C. Milk Thistle....eh not so much.
Please don't try and tell people "Milk Thistle" is a substitute for proper treatment. There are people looking at this that know nothing about Hep C, and they don't needs "herbs".
You issue wasn't from Peg and Riba, it was from an allergic reaction to another drug. It sounds like your Doc sucked, and wasn't on top of your WBC.
James
That's NOT what I said. Please kindly READ my posts prior to responding. At least 5 or 6 times I stated that this is NOT what I'm saying. I NEVER said it was a cure. NOR did I ever say it was a "substitute for proper treatment."
And now I remember why I stopped coming to this site. Apparently some people don't read on this site.
My issue WAS from Interferon & Ribaviron as well as Neupogen. It was ALL of it that caused what happened to me. My white cell count plummeted because of the interferon/riba treatment. I was ill... very ill.. for 14 weeks. The neupogen was given to me to bring the white cells up because of what the interferon/ribaviron treatment had done to me.
I never ONCE said to substitute herbs for the interferon/ribaviron treatment. Not once.
Two times already on this thread I've been accused of saying that and two times I refuted and clearly stated what I said.... and so therefore I'm not saying it again. It's all here for you to read. Please read it or simply just don't reply to me but please do not put words in my mouth.
I really doubt I'll be back to this site again. I've been posting on the internet for 12 years and I've never been to a site before where there were so many people who wanted to argue with me and put words in my mouth and claim I said things I didn't say.
I find it quite odd that my posts aren't being read. Perhaps my writing isn't clear enough though I am a writer for a living and also a published writer.
You're welcome to your opinion, of course, but you're not welcome to put words in my mouth. I'd review these posts and quote myself again and again but I don't have time for it. Take the time to read people's posts prior to replying.
............
To all of you, good health.
I wish you well.
Peace out.
James10500 said
Oct 27, 2010
Hi Virginia,
Thanks for the link about Milk Thistle, but I'll stick with the Peg and Riba. Peg and Riba have cured millions of cases of Hep C. Milk Thistle....eh not so much.
Please don't try and tell people "Milk Thistle" is a substitute for proper treatment. There are people looking at this that know nothing about Hep C, and they don't needs "herbs".
You issue wasn't from Peg and Riba, it was from an allergic reaction to another drug. It sounds like your Doc sucked, and wasn't on top of your WBC.
James
virginiap said
Oct 27, 2010
Dear Annie,
Nice to see you again. You are such a kind person. I remember you well from my first visits to this forum. Congratulations on finishing the interferon/ribaviron 48 weeks! What a huge accomplishment! I hope and pray the virus remains undetected and that you have achieved SVR! I very much hope you start feeling better soon! It appears the meds stay in your body for quite some time. After almost 3 months (November 1st will be 3 months for me) of stopping the treatments, I still feel weak and sometimes still, even after all this time, feel the side effects of the meds. On the bright side, it's not ALL the time any more so I suspect that the meds simply take a long time to work their way out of the body. It's only been a few days for you so hang in there. It WILL get better! After your follow-up appointments, discuss the use of these supplements with your doctor to make sure you don't start them too soon. Some may think they have no effect and think it's not "proven" that milk thistle helps with cleansing and inflammation of the liver, but I go by what I've read in addition to the fact, as you said, that these supplements have been helpful for many years in eastern medicine (China and Japan, etc.) Hang in there and I'll check in from time to time to see how you're doing, OK?
Love back to you,
xxoo
Dori
Dear Mike,
Here's a link of interest you may want to check out. Though you say that milk thistle has not been "proven to be effective", it indeed has been proven to be effective in helping to cleanse the liver as well as reduce inflammation. The jury is out about whether milk thistle reduces the viral level, but I'm a firm believer that it does based on information I've read as well as two different statements by two different doctors (western doctors, not eastern doctors.... my gastro/hep doctor as well as my primary care physician) who both said to me, "Yes, it is helpful". It isn't, however, a cure. At any rate, check this link and read the sources below which include NIH studies
My sister is a doctor. She works for NIH doing research (not HepC research, heart and lung research) but anyway, she leans more toward western medicine and of course, that makes sense because she works in the United States and that's how she was trained. That said, she agrees with me that she has seen evidence that milk thistle helps cleanse the liver and also helps with inflammation and sees no harm in taking it. As you said, it is not proven through tests that it will regenerate healthy cells, however I do believe it's proven that it helps to keep the virus from replicating to a degree and definitely proven that it helps with liver inflammation.
Annie (Medusa's) comments about how it should not be taken while patients are on the interferon treatment is good advice. It's always good to check with your physician prior to taking any supplements while on the meds.
I have another friend who is a doctor in Hawaii. He is an internist. He has had Hep C patients and told me one story about a patient of his whose viral load was 22 million. After taking bupleurum religiously, he told me his patient reduced his viral load substantially.
Here's a quote from his email to me:
I am thrilled that your beginning RNA counts were only 290K and that they were undetectable after 4 weeks. I think you will do very well. One of my patients dropped his viral load from 22 MILLION to about 8 million while on Bupleurum.
Please note that he is a medical doctor, an MD. But again, to all who are reading this, please consult with your physician prior to taking supplements while on the interferon treatment!
Thank you for your kind words about the experience I had. It scared the daylights out of me. I am lucky to be viral free at this time and hope to remain viral free and that all I went through was for a reason.... and I will achieve SVR. If the virus comes back, I will wait until they produce a drug that is more easily tolerated by me, yes. Thank you!
I remain upbeat and positive and hopeful that I've won the battle against the virus already but we'll have to see. In the meantime, I'm planning on taking care of myself, eating healthy and exercising. I'm in my mid-50s and plan on getting into the best shape of my life. It's a goal of mine to get back to my 50 laps at the pool several times a week as well as go back into the dance studio. I was a dancer when I was younger and I figure you're never too old to dance and so..... I will!
I, too, wish you the very best with your treatment.
-Dori from Virginia
Mike said
Oct 27, 2010
Like most herbal medicines, milk thistle has not been proven to be effective. The studies have been poorly done. The sample sizes have been to small to draw relevant conclusions. However though it's felt it blocks toxins from entering the liver and gives the liver a chance to regenerate healthy cells, it's not been proven. Though people have used it for 2000 years, it apparently isn't worth having significant analysis done by the medical world.
My opinion is; apparently milk thistle isn't a hazardous thing and won't hurt anyone trying to use it. If there's a chance it'll help people then I'm all for it.
Another thing to consider is that people who seek health improvement through herbal medicine will often change their lifestyle. The change often creates improvement by itself. I see nothing wrong with that.
Also when it comes to herbal medicine, it's considered by people with medical degrees some herbal supplements improve certain conditions. My wife (who actually has a medical degree) often tells people to take tablets made from fish oil and flax seed oil to lower their cholesterol.
Virginia, I'm very sorry you had such a horribal experience with the treatment. Hopefully the next few years will produce a drug that is a lot more effective and user friendly. You seem to be very upbeat and willing to move on. I wish the very best for you.
medusa said
Oct 27, 2010
Hi Virginia, Good to see you back on the forum again after your horrible experiences, and to hear that on the whole you are a lot better now. I agree with what you say about these particular herbal medicines in the treatment of HepC. They have been shown to be effective in helping the liver to function better, and maybe slow down the progress of the disease, and reduce viral levels, it has also been shown to reverse liver damage. They have been used in China, Europe and Middle Eastern countries for thousands of years in the treatment of chronic hepatitis. In France herbal medicine and other so-called 'alternative' therapies are very much incorporated into the national health service. This is very good, it gives the patient a choice of alternatives, and means that the herbal medicines are prescribed by a qualified medical practitioner, with a full knowledge of the patient's medical history. Two things to be wary of with Milk Thistle (Silibum marianum): It shouldn't be used in combination with the interferon/ ribervirin therapy, as it works by blocking toxins from entering the liver, and therefore could prevent the tx drugs from being effective. It can also not be suitable for some patients with particular types of liver damage, or rare complications arising from HepC. I chose to do the interferon/ ribervirin therapy for 48 weeks as my liver damage was progressing rapidly and the virus was aggressive. I felt it was my best chance of beating the virus once and for all. I didn't take any herbal meds during the tx, and have now been finished for 16 days. So far I still have all the side-effects and feel no better. When the drugs have left my mind and body a little more I will start to use herbal meds to complete the de-toxification, and help strengthen the liver. I also agree about the importance of eating plenty of salt with the large quantity of water required on tx. No problem for me as I love salty food, but found I was eating much more on tx. Good quality sea salt contains many of the essential minerals, rock or table salt is better avoided. Thanks for posting those links, wishing you the best, Love Annie xxxxx
virginiap said
Oct 27, 2010
BTW, I do have one one more comment for people who are on the treatment.
When I went into the hospital, my electrolytes were WAY off! The doctors in the hospital told me it was because I was drinking sooooooo much water that it was washing minerals and salt out of my body, both which are necessary.
So, though it's definitely extremely important to stay hydrated, I was advised by the doctors that I shouldn't have ONLY been drinking water which is what I was doing since this is what I understood I was supposed to do.
They said that Gatorade is good thing to drink during treatment (something my Hep C doctor never told me) because it not only hydrates you but restores your electrolytes.
In addition, salt your food. If you drink a lot of water, your salt gets depleted, washed right out of you and you NEED *some* salt for your body to function properly and for your electrolytes to be in balance.
Again, please ask your doctor before adding milk thistle and bulpeurum WHILE you are taking the interferon/ribo combo therapy. It might not be safe, I don't know. But it's worth checking into.
Here are some links you may find interesting about both of these supplements in regards to hep C viral load:
Silymarin Milk Thistle Extract May Inhibit Hepatitis C Virus Entry into Cells http://www.hivandhepatitis.com/hep_c/news/2010/0820_2010_a.html
Hep C Update: New Evidence for Milk Thistle http://www.hepatitis-central.com/mt/archives/2010/03/hep_c_update_ne.html
Four More Key Benefits of Milk Thistle http://www.hepatitis-central.com/mt/archives/2009/08/four_more_benef.html
Recommendations for Prevention and Control of Hepatitis C Virus (HCV) Infection and HCV-Related Chronic Disease = Center for Disease Control http://www.cdc.gov/mmwr/preview/mmwrhtml/00055154.htm
Treatment For Hepatitis C http://www.nyc.gov/html/doh/html/cd/cdhepc-fs6.shtml
Complementary and Alternative Therapies Complementary therapies are used together with conventional medicine to treat many illnesses, including HCV and the side effects of treatment. Alternative therapies are used instead of conventional medical treatment.
Complementary and alternative therapies attempt to use the body's natural self-healing abilities to bring the body back into balance. These therapies can include acupuncture, massage, yoga, Tai Chi, meditation, and Chinese herbal medicine. No complementary or alternative therapies have been scientifically proven to cure or even ease symptoms of HCV. All substances, including herbs, can have dangerous side effects and impact the dosing of other drugs. Talk with your doctor or pharmacist before using any complementary or alternative therapies - including over-the-counter ones. Herbs and herbal products with the most information, as well as most widely used, include:
Bupleurum contains constituents known as saikosaponins that appear to account for much of the medicinal activity of the plant. Test tube studies have shown that the sho-saiko-to combination can increase production of various chemicals (known as cytokines) that immune cells use to signal one another.3 Test tube studies have also found that saikosaponins can inhibit growth of liver cancer cells,4 and are anti-inflammatory.
Human trials, only one double-blind, have shown that the bupleurum-containing formula sho-saiko-to may help reduce symptoms and blood liver enzyme levels in children and adults with chronic active viral hepatitis.7 8 9 10 Most of these studies were in people with hepatitis B infection, though one preliminary human trial has also shown a benefit in people with hepatitis C.11 Sho-saiko-to was also found, in a large, preliminary (but not double-blind), study to decrease the risk of people with chronic viral hepatitis developing liver cancer.
Sho-saiko-to has also been used to reduce symptoms of and possibly decrease the severity of liver cirrhosis, though clinical studies on this condition are generally lacking. One randomised trial (it was unclear if this trial was double-blind) found that sho-saiko-to could reduce the rate of liver cancer in people with liver cirrhosis.
Please note that I am not a doctor or a salesperson. All I am is a patient who was intolerant to the interferon/ribo combo treatment so I'm trying these 2 alternative supplements to help keep my liver clean since I believe there is ample evidence that they help.... and 2 doctors have agreed that this evidence is valid.
Good health and blessings to all.
-Dori from Virginia
virginiap said
Oct 26, 2010
No, I didn't say Milk Thistle and Bulpeurum cures hep C.
I said both lower the viral load. These are proven facts. Google it. Even doctors agree that these two herbs found in your local health food store are helpful for cleansing your liver.
The interferon and ribaviron chemo treatment is all they have now which is known to provide SVR for some people... many, depending on your genotype.
Currently I had to go off the meds because of what happened to me. (see my post below) so I'm taking the Milk Thistle and Bulpeurum, both recommended to me by a medical doctor.
My viral load remains undetected after stopping the treatment 14 weeks into it. That's as far as I could get because of what I described. I'm lucky it's undetected and I hope and pray it stays that way.
I take the supplements because they've been proven to help cleanse the liver. I never once stated they were a substitute for the only treatment they have right now which is the interferon and ribaviron.
I am not a doctor and I'm not at all suggesting anybody go off the treatment and replace the treatment with these supplements. Please don't misunderstand me.
My virus is currently undetected because of the interferon and ribaviron which I did for 14 weeks but unfortunately, I am treatment intolerant, which is what this particular forum is for. Since my white blood cells plummeted so low and since I'm allergic to the only medicine they have available to bring them back up (neupogen) which landed me in the hospital, I can't do the treatment even if the virus returns. I wouldn't touch it. It almost killed me.
That's just ME.... I represent a small percentage of patient's reactions to these drugs, apparently.
All I'm saying is to listen to your body. If the treatment is making you VERY ill, and your doctor is telling you this is normal, in my opinion it's NOT normal to be that ill and my dosage should have been lowered long before they gave me the neupogen because the meds were making me too ill.
Thanks for understanding. I never once said to replace the interferon/riba treatment with supplements available at health food stores. I simply stated that both of these supplements are known to reduce the viral count ... NOT get rid of the virus. And now I'm taking them because I'm off the treatment and never can go back on this particular treatment even if the virus comes back because obviously, I can't run around the planet without an immune system and I'm allergic to the only drug they have to bring the white cells back up.
Thanks for both of your replies, James & Mike. I wish you both well and success with your treatment.
My major reason for posting here is because I had a horrible experience since my body reacted the way it did to the meds and I just wanted to tell people that if they are really VERY sick, to listen to their bodies and not let the doctors tell them to keep on the treatment since it can be dangerous. At the very least, ask your doctors to lower the dosage if you're very ill. I hope and pray none of you will go through what I did. I'm still recovering, 2 months later after stopping the meds.
Also.... I'm not sure whether you should even consider taking the milk thistle and bulpeurum while on the interferon combo treatment. I don't know if that's safe. So, consult with your doctor about that. I'm taking it now because I'm OFF the drugs and Im hoping it will help keep the virus from coming back.
I've discussed both of these supplements with 2 doctors plus have done research on the web and both doctors and the web research indicate that both supplements are helpful to lowering the viral load and cleaning the liver.
This, however, does not mean that they can replace the interferon/ribo treatment and clear you of the virus. I'm not even nearly suggesting that.
Be well, take care and listen to your bodies. I questioned myself for 14 weeks about whether I needed to take myself to the emergency room. I was very sick the whole time. Some people's bodies handle these meds differently than others.
This is just my personal story and all I'm saying is I wish I had stopped the treatment earlier... or at LEAST they had lowered my dosage ... maybe I wouldn't have ended up in the hospital.
I'm very lucky that 2 months later the virus remains undetected and I hope it stays that way. My primary care physician said, "Everybody's different. Maybe you did it long enough so you'll get a SVR. We'll see."
Best health to all of you. I'm on your side.
Mike said
Oct 26, 2010
James, I had the same question. It would be interesting to see what the FDA says about bulpeurum and milk thistle. I'm not sure what bulpeurum is but if it's so effective for "cleansing the liver" and "lowering VL" why didn't we all just use them. They sound like natural meds and if they're less invasive and there's no Sx's perhaps everyone should stop Tx and start using them.
I guess when it comes to our filthy livers, impacted fecal matter and excessive toxins in our bodies we're probably all going to just have to give up and die.
I actually had a fella tell me once he had a computer program that could analyze all the excess heavy metals in my body. He only had to hook 2 probes to me and start the program. In awhile I'd have a printout to tell me where I needed help. Then he had several "natural" meds that would help me flush them from my body. At $40.00 each time he hooked the probes to me and the cost of the meds and the fact I'd have to come back for an undetermined number of weeks, I couldn't wait to get started. I guess the only reason I didn't start his therapy was he ended up incarcerated in the local crowbar hotel.
Along those same lines, I had an uncle who was suffering with colon cancer. His daughter was treating him daily by massaging his lower back and butt with a copper rod hooked up to some sort of black box that was plugged into a wall outlet. He was optimistic his cancer would be in remission soon. I believe he'd have made it but he died from the cancer before the cure could work.
I remember someone telling me about a certain pair of socks made of a type of material that if put on the feet and worn for several days would pull the heavy metal in your body directly through the bottom of your feet and after several days of wearing the socks you could actually see how the bottoms would change color. He said the discoloration was caused by the socks soaking up the metals. He also said you could even smell the metals in the socks. I passed on his therapy.
Well I guess I better go, I need to get ready for Halloween. Did I ever tell you I'm a faith healer and a witch doctor.
Have a great day -Mike
James10500 said
Oct 26, 2010
Hi Virginia,
That is a terrible thing to had to go through.
If Milk Thistle lowers VL why are Interferon and Riba perscribed ?
I hope it all works out for you.
James
virginiap said
Oct 26, 2010
Hi. I joined this forum a few months ago but stopped posting here after a discussion about my difficulties with the treatment got me upset. Anyway, I decided to come back and give you all an update. In case you're interested... here's my story:
I had to stop treatment at 14 weeks. My white blood cell count plummeted and I was so sick the whole time. They gave me neupogen to bring the white count up. I did the injection of neupogen and had an extreme allergic reaction. My face swelled up and my neck, I couldn't breathe, threw up for hours and hours, I got an asthma attack (I am an asthmatic) and had to go to the hospital. I was hospitalized for 5 days. While in the hospital, my red cells also plummeted and I had to have a blood transfusion. My blood pressure was so low, they had to give me bags and bags of IV fluids to bring it back up to normal for 3-1/2 days. On the 4th day, I had water around my lungs. When I left the hospital, I had walking pneumonia.
This is a horror story, I'm sorry. But it's the truth. That was August 1st - 6th that I was in the hospital. Today it's October 26th. Needless to say, they stopped the interferon/ribaviron chemo the day I entered the hospital so I've been off treatment for 2 months.
My white cells are starting to come back up on their own, thank goodness, but still not up to normal. So, since my immune system remains compromised, I've had 2 bouts of bronchitis accompanied by asthma (I am an asthmatic anyway but usually don't get it this often) and have been on 3 rounds of antibiotics during the past 2 months.
My hair started falling out AFTER I stopped the treatment in August. It's still falling out/thinning. It's about half as thick as it used to be now.
I fired my hep C doctor because he didn't listen well to any of my reports about the side effects being intolerable, didn't reduce my dosage, and therefore I really don't think I should have ended up in the hospital.
I retained my sense of humor in the hospital when they gave me the form to sign about the risks of blood transfusions. I said, "OMG, I can't do this blood transfusion! I could get hepatitis C" Hahahaha! I do amuse myself.
I'm currently under the care of my primary care physician who is monitoring my bloodwork and the Hep C remains undetected 2 months after stopping treatment. Hopefully all the hell I went through at least was for some purpose.
That said, my lungs still aren't right... I still have days where I am so weak and still feel the side effects of the meds as if I'm on them still but I'm not.
My liver tests (ALT & AST) are in normal range for the first time in 15 years.
The interferon/ribaviron treatment DID work to quell the virus and I hope it stays that way but I must say that it put me in a position of fighting for my life in the hospital and even if the virus comes back, I'll never do it again. Unless they come up with some other type of treatment that isn't debilitating to my health and doesn't threaten my life, I'm not touching the stuff.
I do wish you all well and I realize that I am probably in a very small percentage of patients who has such dire reactions to these drugs. HOwever, I have to emphasize that the doctors/health professionals do not give enough information about the possibilities of the type of experience I had to endure.
No, I CAN'T do this and my body made me stop and the hospitalization was one of the most scary experiences of my life. I'm lucky I'm here.
I hope none of you will go through what I went through.
Please don't listen to doctors who tell you the debilitating side effects are normal. Listen to your body.
If you are short of breath, if your heart is racing, if you're feeling so weak you can't get out of bed, if you're throwing up, etc., heed your body's warnings and get off the drugs. I'd really hate to see anybody go through what I did.
I wish you all strength and good health. I recommend lots of exercise, staying well hydrated, and taking milk thistle as well as bulpeurum (both milk thistle and bulpeurum are liver cleansers and are proven to reduce the viral load). I wish you all SVR (sustained viral response) if you're on the treatment and fingers crossed, mine will remain undetected as well. Eat plenty of fresh fruits and vegetables, get exercise, stay fit and heed your body's warnings.
I'm posting in the "Treatment Intolerant" forum. That means that I am treatment intolerant.
My posts are directed to others who have also have had bad reactions to the interferon/ribaviron treatment.
I am not advertising herbal remedies nor promoting them.
I was only stating what happened to me, why it happened to me (because I was treatment intolerant) and stating that I have chosen to use two different supplements to help keep my liver clean.
This is my choice and my life and I never, not ONCE, suggested to anyone to stop their treatment and substitute any herbal treatments. Not ONCE. Several times after being accused of doing that, I stated quite clearly that it was not at ALL my intention to state that.
I find some of you to be quite rude and I don't like it and I don't have time for it. I'm still recovering and fighting my own battles with my health.
I was trying to be a kind person to address others who are treatment intolerant such as I am and suggest some means to help them out since the treatment for some of us makes us sick. I almost died.
That's all I have to say.
I was nice to everyone and got accused of stating things I didn't state.
I am not a doctor (I repeat... had you read my posts you would have seen that I've typed that already). I am NOT suggesting to anyone any substitution of the interferon/ribaviron treatment. I don't know how many more times I can say it before it's read and understood.
You can call my posts BS and you can attack me for saying things I didn't say but that's your problem, not mine.
Is there an email address please to the administrator of this site?
I would like not only my membership to be removed but I would like all of my posts to be removed.
You people have been quite mean to me and I don't appreciate it.
I don't want my posts here and frankly, other than having met Medusa and Dee, the entire experience of posting on this site has been ridiculously taxing.
I don't like conflict. I don't like to be accused of saying things I didn't say. And I don't like people who are mean to me.
I'm done with it.
If anybody knows the email address of the administrator, please contact me and let me know or post it here on this thread so I can contact him or her and ask her to delete my membership from this site and remove all of my posts.
Thank you.
-- Edited by virginiap on Thursday 28th of October 2010 05:50:01 AM
I guess it's easy to see why Dori left in the 1st place. I mean her being a published writer and all. Oh along those lines I've been meaning to mention the fact, I wrote a "letter to the editor" of the local newspaper last month and it was published the next week. At any rate I don't think she's been respected as she should be. She's quoted many doctors and copied several websites for us to visit. The problem I have however is the fact the FDA doesn't bother to take the time to conduct trials on these herbal treatments. And I don't blame them for not wasting their time. Though many people will tell you the FDA is in the pockets of the chemical and drug companies I still find them more trustful then most massage therapists.
However another problem I have is in spite of my responses I really am having a problem getting involved with the whole BS herbal medicine scene. I keep hearing crap regarding garlic for cholesterol, St John's Wart for Depression, now milk thistle to lower the viral load for Hep C. My Dad wore copper bracelets for his arthritis. He swore it helped. I said he was full of it.
Apparently Dori has had to deal with our style of ridicule before. She found it necessary to leave the forum. Now I'm not one to start a rift on these forums and won't normally go off on people, but this is twice I've found it necessary to defend myself because someone either jumped to a conclusion without having the correct facts or tried to blow smoke up my _ss. And though I've felt insulted both times I also have been willing to give the person doing it the benefit of the doubt.
One of these people was Brendan and I feel bad about the way I responded. Neither one of us actually knew what the cause of my issues were with my sense of balance and the effect the sinus infection was having on my eyes. Brendan was correct in saying I should see a physician but was just abrasive enough to get my irish up. Believe me when I tell you I miss Brendan on here daily and hope at some point he'll return. I've discussed this with Brendan by means of a private message.
Dori on the other hand came on here and immediately made statements regarding milk thistle. Up to this point in my life anytime I hear someone start talking about herbal treatments it raises a red flag. And I think rightly so. These treatments seldom have the proper backing to prove their claims. I don't know Dori and after the last couple days don't know if I should spend time attempting to know her or not. I know she became defensive the minute someone questioned something she said on the forum and apparently, based on how quickly she became defensive, has been here before.
At any rate it's time to stop with this nonsense and move on.
Your friend, -Mike
* Medical School: Cornell University Medical College
* Internship/Residency: 1976- 1979, Creighton University
* Fellowship: 1979-1982, University of Colorado School of Medicine
Honors and Awards
* Phi Beta Kappa
* National Institutes of Health Clinical Investigator Award, 1983 1986
* American Gastroenterological Association Research Award, 1983 1984
* American College of Physicians Teaching & Research Scholarship, 1983 1986
* Polycystic Kidney Research Foundation, Research Award, 1992-1993
* Best Doctors in America Award, 1999
* Fellow, American College of Physicians (FACP), 1999
Faculty Appointments
* 1982 to 1988 - Assistant Professor of Medicine, Division of Gastroenterology, University of Colorado School of Medicine, Denver, Colorado
* 1988 to 1996 - Associate Professor of Medicine, Division of Gastroenterology, University of Colorado School of Medicine, Denver, Colorado
* 1988 to 1995 - Director, Gastroenterology Fellowship Training Program, Core Director, GC/MS Laboratory, Hepatobiliary Research Center
* 1996 to Present - Professor of Medicine, Division of Gastroenterology, University of Colorado School of Medicine, Denver, Colorado
* 1990 to Present - Director, Section of Hepatology, University of Colorado School of Medicine, Denver, CO
Committees and Responsibilities
* 1992 - Present Training and Education Committee of the AASLD
* 1995 - Present Member of the Data and Safety Monitoring Board for the PBC Ursodiol Methotrexate Placebo Study (DSMB /PUMPS)
* 1996 - Present Board Member, American Liver Foundation
* 1999 - Present Co-Chair, Ancillary Committee, NIH-NIDDK 98-4 Hepatitis C Clinical Trial
* 1999 - Present Steering Committee, NIH, HALT-C Clinical Trial
* 2000 - Present Exemption Committee, NIH, HALT-C Clinical Trial
* 2000 - Present Recruitment Committee, NIH, HALT-C Clinical Trial
* 2002 - Present Clinical Outcomes Committee, NIH, HALT-C Clinical Trial
* 1999 - Present Hepatitis C Caring Ambassadors
* 1996 - Present Executive Board Member, American Liver
* 2002 - Present American Society of Transplantation Awards Committee
* 1997 - Present Chairman, Transplant Outcomes Committee
* 1998 - Present Member of the Clinical Practice Committee
* 1996 - Present Chairman, Association of Transplant Physicians and Surgeons
* 1999 - Present Faculty Committee to Review Infrastructure Support for Clinical Research
* 1991 - Present Chairman, Patient Selection Committee for Liver Transplantation
-- Edited by James10500 on Thursday 28th of October 2010 02:01:52 AM
-- Edited by James10500 on Thursday 28th of October 2010 02:29:32 AM
-- Edited by James10500 on Thursday 28th of October 2010 02:30:03 AM
Hi Virginia,
Thanks for the link about Milk Thistle, but I'll stick with the Peg and Riba. Peg and Riba have cured millions of cases of Hep C. Milk Thistle....eh not so much.
Please don't try and tell people "Milk Thistle" is a substitute for proper treatment. There are people looking at this that know nothing about Hep C, and they don't needs "herbs".
You issue wasn't from Peg and Riba, it was from an allergic reaction to another drug. It sounds like your Doc sucked, and wasn't on top of your WBC.
James
My opinion is; apparently milk thistle isn't a hazardous thing and won't hurt anyone trying to use it. If there's a chance it'll help people then I'm all for it.
Another thing to consider is that people who seek health improvement through herbal medicine will often change their lifestyle. The change often creates improvement by itself. I see nothing wrong with that.
Also when it comes to herbal medicine, it's considered by people with medical degrees some herbal supplements improve certain conditions. My wife (who actually has a medical degree) often tells people to take tablets made from fish oil and flax seed oil to lower their cholesterol.
Virginia, I'm very sorry you had such a horribal experience with the treatment. Hopefully the next few years will produce a drug that is a lot more effective and user friendly. You seem to be very upbeat and willing to move on. I wish the very best for you.
I chose to do the interferon/ ribervirin therapy for 48 weeks as my liver damage was progressing rapidly and the virus was aggressive. I felt it was my best chance of beating the virus once and for all. I didn't take any herbal meds during the tx, and have now been finished for 16 days. So far I still have all the side-effects and feel no better. When the drugs have left my mind and body a little more I will start to use herbal meds to complete the de-toxification, and help strengthen the liver.
I also agree about the importance of eating plenty of salt with the large quantity of water required on tx. No problem for me as I love salty food, but found I was eating much more on tx. Good quality sea salt contains many of the essential minerals, rock or table salt is better avoided.
Thanks for posting those links, wishing you the best,
Love Annie xxxxx
When I went into the hospital, my electrolytes were WAY off! The doctors in the hospital told me it was because I was drinking sooooooo much water that it was washing minerals and salt out of my body, both which are necessary.
So, though it's definitely extremely important to stay hydrated, I was advised by the doctors that I shouldn't have ONLY been drinking water which is what I was doing since this is what I understood I was supposed to do.
They said that Gatorade is good thing to drink during treatment (something my Hep C doctor never told me) because it not only hydrates you but restores your electrolytes.
In addition, salt your food. If you drink a lot of water, your salt gets depleted, washed right out of you and you NEED *some* salt for your body to function properly and for your electrolytes to be in balance.
Again, please ask your doctor before adding milk thistle and bulpeurum WHILE you are taking the interferon/ribo combo therapy. It might not be safe, I don't know. But it's worth checking into.
Here are some links you may find interesting about both of these supplements in regards to hep C viral load:
Silymarin Milk Thistle Extract May Inhibit Hepatitis C Virus Entry into Cells
http://www.hivandhepatitis.com/hep_c/news/2010/0820_2010_a.html
Hep C Update: New Evidence for Milk Thistle
http://www.hepatitis-central.com/mt/archives/2010/03/hep_c_update_ne.html
Four More Key Benefits of Milk Thistle
http://www.hepatitis-central.com/mt/archives/2009/08/four_more_benef.html
Recommendations for Prevention and Control of Hepatitis C Virus (HCV) Infection and HCV-Related Chronic Disease = Center for Disease Control
http://www.cdc.gov/mmwr/preview/mmwrhtml/00055154.htm
Treatment For Hepatitis C
http://www.nyc.gov/html/doh/html/cd/cdhepc-fs6.shtml
http://books.google.com/books?id=VqBQMfcuobQC&pg=PA29&lpg=PA29&dq=hep+C+bupleurum&source=bl&ots=JVPILhbVSt&sig=D3Q6xwNljkzpGJfcUxIEBRXkfT8&hl=en&ei=zKjHTJqpCYT7lwf62tGkAg&sa=X&oi=book_result&ct=result&resnum=8&ved=0CDEQ6AEwBzgU#v=onepage&q&f=false
Bupleurum
http://www.revital.co.uk/Health_Directory/Herb/Bupleurum
Please note that I am not a doctor or a salesperson. All I am is a patient who was intolerant to the interferon/ribo combo treatment so I'm trying these 2 alternative supplements to help keep my liver clean since I believe there is ample evidence that they help.... and 2 doctors have agreed that this evidence is valid.
I guess when it comes to our filthy livers, impacted fecal matter and excessive toxins in our bodies we're probably all going to just have to give up and die.
I actually had a fella tell me once he had a computer program that could analyze all the excess heavy metals in my body. He only had to hook 2 probes to me and start the program. In awhile I'd have a printout to tell me where I needed help. Then he had several "natural" meds that would help me flush them from my body. At $40.00 each time he hooked the probes to me and the cost of the meds and the fact I'd have to come back for an undetermined number of weeks, I couldn't wait to get started. I guess the only reason I didn't start his therapy was he ended up incarcerated in the local crowbar hotel.
Along those same lines, I had an uncle who was suffering with colon cancer. His daughter was treating him daily by massaging his lower back and butt with a copper rod hooked up to some sort of black box that was plugged into a wall outlet. He was optimistic his cancer would be in remission soon. I believe he'd have made it but he died from the cancer before the cure could work.
I remember someone telling me about a certain pair of socks made of a type of material that if put on the feet and worn for several days would pull the heavy metal in your body directly through the bottom of your feet and after several days of wearing the socks you could actually see how the bottoms would change color. He said the discoloration was caused by the socks soaking up the metals. He also said you could even smell the metals in the socks. I passed on his therapy.
Well I guess I better go, I need to get ready for Halloween. Did I ever tell you I'm a faith healer and a witch doctor.
Have a great day -Mike
That is a terrible thing to had to go through.
If Milk Thistle lowers VL why are Interferon and Riba perscribed ?
I hope it all works out for you.
James