Medical Forum / Diseases and Disorders / Hepatitis / October 2008
Alpha Feto Protein going up?
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Holsbergs~Frankie John~Lorianne too - 18 Sep 2008 09:45 GMT Hi, LA here..and this is a first time post here..I was encouraged to do so.. as I, see that support is truly offered by you folks. I am newly diagnosed with cirrhosis / grade 3 stage 4 Ast 295 / Alt 290 / Vl 889032 Afp 86.30 genotype 1b.The numbers are high yes..just how sick am I?..how quicker,to be sicker?? I am on the fence about treatment..I don't like my odds as I read more like a non- responder. I was offered a 12 wk trial and that seems as if my doctor has a touch of my own pessimism... this tumor marker test has been going up with every drawl..doctor was forceful.. gave me a timeline to a transplant list..he was adamant that I be vaccinated for the A & B...I read that doing so would only raise the viral Load more..is this accurate? I felt as if he was trying to scare me into treatment Asap..I will allow to do his endoscope procedure. Please, just how serious do my numbers look? Should I be frightened?...I am in a daze and unable to absorb all this..I see that all of you are alot wiser than I at this point..I`m way to emotional.I need to learn it in lay term.The doctor told me that I need to be less afraid of the treatment making me worse off in the long run..and I truly wonder if its just to late..to see the point of it now..I want my brain to function for the rest of my time..I do not want to speed up any more of this disease by my own hand. Can one of you please, help me with some perspective..I`m lost to this.. as of now. Thank-You..whomever responds for me. LA
greyhackles - 18 Sep 2008 18:07 GMT >Hi, LA here..and this is a first time post here..I was encouraged to >do so.. as I, see that support is truly offered by you folks. [quoted text clipped - 23 lines] >Thank-You..whomever responds for me. >LA Hi, LA. And welcome to our little group - where we put the "fun" in "dysfunctional" ;-)
Your numbers obviously aren't great, but without having more history to the past rate of progression, there's no sound way to predict the future. Clearly, with those alt/ast and inflammation grades, your liver is under siege, so without some kind of intervention, it will only get worse.
The AFP number isn't all that high. At that level the correlation with HCC is barely above 1.5% (http://www.medscape.com/viewarticle/452731_4).
The endoscope procedure would be used to determine whether you have any esophageal varices. If you've been experiencing pain that feels like "heartburn", this would be a useful examination. Beyond that, it isn't going to be predictive of disease progression.
Clearly you've had a liver biopsy, but have you had a liver ultrasound since your diagnosis? If not, I would ask your treating physician to schedule it.
If you have never tried anti-HCV therapy, there's no way to predict whether you would respond favorably to treatment. While your genotype is one of the harder to treat, and your staging is a negative indicator, your viral load is fairly low. If your BMI isn't on the high side, that would work in your favor as well.
I suspect the "12 week trial" meant your doctor would initiate treatment and use your 12 week results to determine whether your response was adequate enough to continue treatment. That would be a quite proper proposal, and would certainly be something I'd grab onto and go with, were I you.
I'd would also certainly get the Hep A & B immunizations - after first being tested for A & B antibodies, of course. If you've never been exposed to either, the potential harm from contracting either would be very serious.
The Hep A immunization has a very high degree of success - nearly 100% of adults will develop protective levels of antibody within one month after a single dose of vaccine (though manufacturers recommend a two-dose course for added protection). The current vaccines are well tolerated and no serious adverse events have been statistically linked to their use. http://www.who.int/vaccines/en/hepatitisa.shtml
The Hep B immunization involves a series of three shots spaced months apart. In adults, the success rate is lower than that of the Hep A immunization, but given the extremely low risk of side effects, it is still high enough to be justified in someone with a compromised liver. http://www.ama-assn.org/ama/pub/category/1809.html
From what I've read about these vaccinations, I do not believe either would have any negative (or positive, for that matter) effect on your HCV viral load.
For what it is worth, I was g1b, infected for over 30 years, started therapy with a VL over 7 million IU, grade 3 inflammation and verging on stage 3 damage, and a BMI almost 29, but had an excellent response and have been clear for over 3 years since end of therapy. There is hope for you.
Cheers - and I hope this helps,
/greyhackles
chardonney9 - 18 Sep 2008 19:32 GMT > I'd would also certainly get the Hep A & B immunizations - after first being > tested for A & B antibodies, of course. If you've never been exposed to [quoted text clipped - 12 lines] > justified in someone with a compromised liver. > http://www.ama-assn.org/ama/pub/category/1809.html Hepatitis B Vaccine: Good for 'Newborn' Prostitutes and Drug Users, but Who Else? by Dr. Gregory Damato, Ph.D.
http://www.naturalnews.com/z023610.html
(NaturalNews) The Hepatitis B (Hep B) vaccine is considered one of the most controversial vaccines in the pediatric vaccination schedule. Why are we giving it to newborns and what are the adverse reactions associated with such an early vaccination?
What is Hep B?
Hep B is a very rare disease caused by the Hep B virus which primarily affects the liver and is principally spread through the blood. Hep B may lead to chronic infection and cirrhosis (scarring) which may then progress to liver cancer. Approximately .2% of the population in America currently have Hep B, leaving 99.8% of the population free of this virus. According to the Center for Disease Control (CDC), approximately .001 percent of all infants under the age of one year will contract Hep B and 95 percent of them will recover on their own and never contract the virus again. In the U.S. in 2005, only five children under the age of five were reported to have been infected with Hep B (Morbidity and Mortality Weekly Report, March 30, 2007). Furthermore, the U.S. continues to have the lowest recorded levels of Hepatitis in the world. According to the October 31, 1997 MMWR published by the CDC, "Hepatitis B continues to decline in most states, primarily because of a decrease in the number of cases among injecting drug users and, to a lesser extent, among both homosexuals and heterosexuals of both sexes."
How do you get Hep B?
Hep B is transmitted from bodily fluids that are contaminated with the virus. This can be done through unprotected sex, contaminated needles, blood transfusions or vertical transmission from mother to child.
What is the Hep B Vaccine?
In November of 1991, the Advisory Committee on Immunization Practices of the CDC recommended the universal vaccination of Hep B to every newborn in the U.S. There are currently two types of genetically engineered hepatitis B vaccines licensed for use in the U.S.: Merck's Recombivax HB® (each 0.5 mL dose contains 5 mcg of hepatitis B surface antigen with formaldehyde, and .5mg of aluminum (potassium aluminum sulfate)[1] and GlaxoSmithKline's Engerix-B® (each 0.5 mL dose contains 10 mcg of hepatitis B surface antigen adsorbed on 0.25 mg aluminum as aluminum hydroxide, sodium chloride, disodium phosphate dihydrate, and sodium dihydrogen phosphate dihydrate [2].
When is the Hep B Vaccine Given?
The Hep B vaccine is the first vaccine given to newborns and is injected within 12 hours of birth. The CDC then recommends a second injection at one to two months of age and a third vaccination between six and 18 months (regardless of manufacturer).
Why is the Hep B Vaccine Given?
This vaccine is given because of fear, lack of knowledge and corporate greed from the vaccine manufacturers. Merck generates over $1 billion worth of revenue from this vaccine alone. Most hospitals allow for screening of Hep B in mothers prior to birth, but many do not do this. Even if the mother tests positive for Hep B, there is only a 5% probability that the virus will be passed from mother to child. We are ostensibly injecting helpless newborns (nearly 1 million per year in the U.S.) with this vaccine with the false belief that every mother already has Hep B and if they don't, we will be protecting the future generation of promiscuous teens and drug users. The CDC and FDA know that drug users and prostitutes will not get the vaccine themselves and therefore it is better to vaccinate these potential drug users and hookers when they are born. The CDC and Merck have collaborated to misinterpret and skew the number of cases of Hepatitis B in the U.S. They say each year up to 320,000 new cases occur, yet the CDC documents report that only 10,000 new cases occur. Even of these 10,000 cases, 95 percent (or 9,500) will recover on their own and forever have natural immunity. This type of misinformation and fear tactics are nothing new to Big Pharma, for it is fear that allows one to control the masses and as a corollary, numerous infants and families have forever been harmed.
Adverse Reactions to Hep B?
Accurate data on adverse reactions to the Hep B vaccine are very difficult to come by due to scarcity or lack of reporting by many physicians as well as blocked reporting data from the CDC. The most recent and complete data from the VAERS (Vaccine Adverse Event Reporting System) and government agencies (CDC, FDA) are from July, 1990 to October 1999 and include 24,775 adverse reactions. These reactions include 439 deaths and 9,673 emergency room visits. These reactions have included, arthritis [3, 4]; skin disorders [5]; compromised immunity and autoimmune disease [6]; neurological damage; vision loss and rare eye disorders such as optic neuritis [7] and epitheliopathy [8]; blood disorders [9]; diabetes [10]; damage to liver and kidneys [11]; severe vomiting, diarrhoea and death [12].
Because the reporting of adverse events to VAERS is completely voluntary, up to 96 to 99 percent of these reactions are never reported [13]. Realistically, the number of adverse events following Hep B vaccination from 1990 to 1999 would be somewhere around 2.5 million (24,775 multiplied by 99). In addition to the above adverse reactions, additional severe reactions have been reported from Merck and GlaxoSmithKline Biologicals which include: edema of the heart, chest discomfort, Guillain-Barre syndrome, fever, hearing damage, bronchial spasms, hair loss, encephalitis, multiple sclerosis, seizures, herpes zoster, Bells palsy, rash, visual impairments and anaphylaxis [1, 2]. In October of 1998, France became the first country to effectively ban the Hep B vaccine given to children due to an increase in child arthritis, multiple sclerosis symptoms and other serious adverse reactions.
From the above evidence we can conclude that if you wish to groom your children to become future drug users who share needles or prostitutes (or quite possibly both) then the risks of contracting Hep B may outweigh the risks of receiving one of the many adverse reactions. But, if you are a responsible parent and believe that your child is extremely unlikely to come in contact with Hep B through such risky behavior (especially as a newborn or infant), then clearly this vaccine is unwarranted. Furthermore, it is safe to say that this vaccine should be removed from the American Academy of Pediatrics infant vaccination schedule to prevent further damage and death to our children. Interestingly enough, up to 87% of pediatricians believe that the Hep B vaccine is totally unnecessary for newborns [14]. It seems that the Hep B vaccine may be warranted in only the most exceptional of circumstances much later on in life, but it has no place being anywhere near our 12 hour old children with a very immature and underdeveloped immune system.
References:
1.Merck & Co., I., Recombivax HB Hepatitis B Vaccine (Recombinant) Issued: December 2007. Product insert from vaccine manufacturer.
2.GlaxoSmithKline, Engerix-B [Hepatitis B Vaccine (Recombinant)] Issued: December 2006. Product insert from vaccine manufacturer.
3.Pope, J.E., et al., The development of rheumatoid arthritis after recombinant hepatitis B vaccination. Journal of Rheumatology, 1998. 25(9): p. 1687-1693.
4.Sibilia, J. and J. Maillefert, Vaccination and rheumatoid arthritis. Annals of the Rheumatic Diseases, 2002. 61(7): p. 575-576.
5.Usman, A., et al., Lichenoid eruption following hepatitis B vaccination: first North American case report. Pediatric Dermatology, 2001. 18(2): p. 123-126.
6.Biron, P., et al., Myasthenia Gravis after general anesthesia and hepatitis B vaccine. Archives of Internal Medicine, 1988. 148(12): p. 2685.
7.Achiron, L.R., Postinfectious hepatitis B optic neuritis. Optometry and Vision Science, 1994. 71(1): p. 53-56.
8.Brezin, A.P., et al., Acute posterior multifocal placoid pigment epitheliopathy after hepatitis b vaccination. Archives of Ophthalmology, 1995. 113(3): p. 297-300.
9.Ronchi, F., et al., Thrombocytopenic purpura as adverse reaction to recombinant hepatitis B vaccine. Archives of Disease in Childhood, 1998. 78(3): p. 273-274.
10.Classen, J.B., Childhood immunisation and diabetes mellitus. New Zealand Medical Journal, 1996. 109(1022): p. 195.
11.Islek, I., et al., Nephrotic syndrome following hepatitis B vaccination. Pediatric Nephrology, 2000. 14(1): p. 89-90.
12.Duclos, P., Adverse events after hepatitis B vaccination. Canadian Medical Association Journal, 1992. 147(7): p. 1023-1026.
13.Rosenthal, S. and R. Chen, The reporting sensitivities of two passive surveillance systems for vaccine adverse events. American Journal of Public Health, 1995. 85: p. 1706-1709.
14.Freed, G.L., et al., Reactions of pediatricians to a new Centers for Disease Control recommendation for universal immunization of infants with hepatitis B vaccine. Pediatrics, 1993. 91(4): p. 699-702.
chardonney9 - 18 Sep 2008 20:35 GMT >> I'd would also certainly get the Hep A & B immunizations - after first >> being >> tested for A & B antibodies, of course. If you've never been exposed to >> either, the potential harm from contracting either would be very serious. That of course is assuming you will be involved in the activities that spread them. If you don't use intravenous drugs and don't sleep around unprotected the B vaccine isn't warranted.
And the A vaccine isn't without side effects either.http://www.mayoclinic.com/health/drug-information/DR601649
Side Effects
Along with its needed effects, a vaccine may cause some unwanted effects. Although not all of these side effects may occur, if they do occur they may need medical attention. It is very important that you tell your doctor about any side effects that occur after a dose of hepatitis A vaccine, even though the side effect may have gone away without treatment. Some types of side effects may mean that you should not receive any more doses of hepatitis A vaccine.
Check with your doctor immediately if any of the following side effects occur: Rare
* Difficulty in breathing or swallowing * Hives * Itching, especially of feet or hands * Reddening of skin, especially around ears * Swelling of eyes, face, or inside of nose * Unusual tiredness or weakness (sudden and severe)
Incidence not known
* Black, tarry stools * Bleeding gums * Blood in urine or stools * Confusion * Inability to move arms and legs * Irritability * Pinpoint red spots on skin * Seizures * Shakiness and unsteady walk * Stiff neck * Sudden numbness and weakness in the arms and legs * Unsteadiness, trembling, or other problems with muscle control or coordination * Unusual bleeding or bruising
Some side effects may occur that usually do not need medical attention. These side effects may go away during treatment as your body adjusts to the medicine. Also, your health care professional may be able to tell you about ways to prevent or reduce some of these side effects. Check with your health care professional if any of the following side effects continue or are bothersome or if you have any questions about them: More common
* Soreness at place of injection
Less common
* Arm or back pain * Bleeding between periods * Body aches or pain * Change in amount of bleeding during periods * Change in pattern of monthly periods * Congestion * Cough * Dryness of throat * Fever of 37.7 °C (100 °F) or higher * General feeling of discomfort or illness * Headache * Hoarseness * Lack of appetite * Lack or loss of strength * Nausea * Pain, soreness * Runny nose * Sneezing * Sore throat * Stiffness * Stuffy nose * Tender, swollen glands in neck * Tenderness or warmth at injection site * Trouble in swallowing * Unusual stopping of menstrual bleeding * Voice changes
Rare
* Aches or pain in joints or muscles * Diarrhea or stomach cramps or pain * Itching * Swelling of glands in armpits or neck * Vomiting * Welts
Other side effects not listed may also occur in some patients. If you notice any other effects, check with your healthcare professional.
Fee Fi - 19 Sep 2008 01:53 GMT on 09/18/2008, chardonney9 supposed :
>>> I'd would also certainly get the Hep A & B immunizations - after first >>> being [quoted text clipped - 9 lines] > > Side Effects ...[snip]
The hep A vaccine is safe and effective. Balance that against how easy it is to catch hepatitis A (in a restaurant, or anywhere that you have casual contact with other people or food prepared by other people), and the evidence (New England Journal of Med) that 15% who get hep A on top of hep C develop liver failure - it's worth taking if your doc thinks you need it.
You've got some great advice coming from the others. All the best,
-- Fee Fi
btw, chardonney9 is out in left field, once again. In case the list of side effects quoted gives you the willies, those things are basically everything anyone ever mentioned after getting the vaccine, whether related or not. The same (Mayo Clinic) site, which just buys its drug information from Micromedex (probably a bunch of lawyers), gives these side effects for "antacid":
============================================
Side Effects Along with its needed effects, a medicine may cause some unwanted effects. Although not all of these side effects may occur, if they do occur they may need medical attention.
Along with its needed effects, a medicine may cause some unwanted effects. Although the following side effects occur very rarely when this medicine is taken as recommended, they may be more likely to occur if: too much medicine is taken; it is taken in large doses; it is taken for a long time; or it is taken by patients with kidney disease.
Check with your doctor as soon as possible if any of the following side effects occur:
For aluminum-containing antacids (including magaldrate) Bone pain Constipation (severe and continuing) Feeling of discomfort (continuing) Loss of appetite (continuing) Mood or mental changes Muscle weakness Swelling of wrists or ankles Weight loss (unusual) For calcium-containing antacids Constipation (severe and continuing) Difficult or painful urination Frequent urge to urinate Headache (continuing) Loss of appetite (continuing) Mood or mental changes Muscle pain or twitching Nausea or vomiting Nervousness or restlessness Slow breathing Unpleasant taste Unusual tiredness or weakness For magnesium-containing antacids (including magaldrate) Difficult or painful urination (with magnesium trisilicate) Dizziness or lightheadedness Feeling of discomfort (continuing) Irregular heartbeat Loss of appetite (continuing) Mood or mental changes Muscle weakness Unusual tiredness or weakness Weight loss (unusual) For sodium bicarbonate-containing antacids Frequent urge to urinate Headache (continuing) Loss of appetite (continuing) Muscle pain or twitching Nausea or vomiting Nervousness or restlessness Slow breathing Swelling of feet or lower legs Unpleasant taste Unusual tiredness or weakness
Some side effects may occur that usually do not need medical attention. These side effects may go away during treatment as your body adjusts to the medicine. Also, your health care professional may be able to tell you about ways to prevent or reduce some of these side effects. Check with your health care professional if any of the following side effects continue or are bothersome or if you have any questions about them:
More common Chalky taste Less common Constipation (mild) Diarrhea or laxative effect Increased thirst Speckling or whitish discoloration of stools Stomach cramps
Other side effects not listed may also occur in some patients. If you notice any other effects, check with your healthcare professional.
chardonney9 - 22 Sep 2008 18:35 GMT > on 09/18/2008, chardonney9 supposed : >>>> [quoted text clipped - 16 lines] > > The hep A vaccine is safe and effective. And what qualifications do you have to say that?
> Balance that against how easy > it is to catch hepatitis A (in a restaurant, or anywhere that you have > casual contact with other people or food prepared by other people), and > the evidence (New England Journal of Med) that 15% who get hep A on top > of hep C develop liver failure - it's worth taking if your doc thinks > you need it. The info I posted is totally valid and you have no training in this whatsoever that you can say it's safe. All I did was post factual information about the vaccine so that this fellow can make an informed decision.
> You've got some great advice coming from the others. All the best, > [quoted text clipped - 6 lines] > information from Micromedex (probably a bunch of lawyers), gives these > side effects for "antacid": <snip>
Probably a bunch of lawyers? You didn't even bother learning what Microdex is and if you did you'd know that many in the medical fields depend on it's information. If you don't know what Microdex does or what the Mayo Clinic is you are certainly not qualified to give an opinion much less make statements that are presented as factual. Let the man know all the facts, good and bad and make up his own mind. It's his body!
Helps you:
* Determine dosing, side effects, and interactions * Identify drugs
The MICROMEDEX® Healthcare Series of databases is primarily a drug information system and is considered one of the most authoritative resources available.
* Full-text databases on chemical, pharmaceutical, and related biological substances used in clinical patient care * Covers teratogenicity, toxicology, alternative medicine, and pharmaceutical information * Includes drug reviews, guidelines, clinical reviews, and information from package inserts and drug texts
Fee Fi - 23 Sep 2008 03:24 GMT chardonney9 laid this down on his screen :
>> The hep A vaccine is safe and effective. > > And what qualifications do you have to say that? That's the requirement of the FDA to license the vaccine.
...
>> everything anyone ever mentioned after getting the vaccine, whether related >> or not. The same (Mayo Clinic) site, which just buys its drug information [quoted text clipped - 9 lines] > that are presented as factual. Let the man know all the facts, good and bad > and make up his own mind. It's his body! Mayo Clinic did not write the content. Micromedex did. Unlike some others, those side effect lists are made without any attempt to determine whether the drug was the cause. That's why they are all over the map. Pretty much worthless.
You are clearly intelligent. I just wish you didn't present (incomplete) information selected to scare people away from treatments that have been shown to work in peer-reviewed studies, and toward things (like CS) that have not been.
-- Fee Fi
Sara - 23 Sep 2008 03:44 GMT > chardonney9 laid this down on his screen : >>> The hep A vaccine is safe and effective. [quoted text clipped - 29 lines] > > -- Fee Fi thanks, Fee Fi, very well said. much better than my efforts
S
Holsbergs~Frankie John~Lorianne too - 19 Sep 2008 09:10 GMT Greyheckles ..hello, and thank you for a welcoming smile. Your response was just perfect information..and I thank you, the links are very much appreciated..and I NOW.. know, why the doctor told me to drop weight and exercise hard..I thought he was more than inappropriate to say that to me with out an explanation! as I am normal range in weight now..I have lost 20 pounds since march of this year..my thyroid had gone into failure and I now take a rx for that..I have corrected a lot of over indulging behavior...no meat had been a biggie..(I graved med-rare gourmet burgers) and the exercise is tougher..I have suffered the worst combination of fatigue and insomnia for about three years now..but the doctor said that there are no symptoms associated with chcv?? and he didn`t know why I would have these phantom symptoms..he just blew me away!! and, with my insurance it`s slim pickings on in network specialist..this one has had a lot of post grad degrees earned..not much for bed side manners in my opinion.I do realize that this style of hard core attitudes in medicine can turn out to be some of the best..but I am a lot more sensitive these days...plus, inherited italian temperament when poked at..so to speak.(ha)..hope you at least smiled! I do have other symptoms as well.Strange red blood spots on my limbs..is this the result of the leaking?..I have all my labs from the past three years..the history that you had mentioned. I do take supplements..maximum milk thistle 700mg alpha lipoic acid 600,7000"C", a no iron multi,selenium 200 mcg,biotin in high dosage,a probiotic accidopholus.. just to mention a few. I did take a c.s. but had to delete it as I had real bad pain in my stomach left side area as well as a jumping liver.. and the pain subsided after I stopped. My vl went down when I changed my eating habits and started with my supplementation. It was 1,250,000 at dx and the afp was 25.90 in 2006. I have had the CAT scan and the ultrasound images done..and no past treatment.I have gone on far to long here now..so, I apologize to you.Thank you again, for taking time with me. I welcome any further advice if you wish. LA
chardonney9 - 22 Sep 2008 18:40 GMT > I do take supplements..maximum milk thistle 700mg alpha lipoic acid > 600,7000"C", a no iron multi,selenium 200 mcg,biotin in high dosage,a [quoted text clipped - 8 lines] > advice if you wish. > LA Notice you didn't get any responses?
That's because the regulars on here don't approve of suppliments and call them "snake oil" when they don't know a thing about them.
I take many of the same things you do and it's gotten so they call me names now even though they haven't a clue what and why I'm taking the things I do.
Char
Waterspider - 22 Sep 2008 19:24 GMT > That's because the regulars on here don't approve of suppliments and call > them "snake oil" when they don't know a thing about them. Wrong, wrong, wrong. Most of us do take supplements, we just don't bother with colloidal silver and know that it will not kill the hepatitis c virus. Personally, I don't give a rat's a.s if you compromise your quality of life and die prematurely because of your ignorance, but please don't try to encourage others to do so.
dBo - 22 Sep 2008 20:45 GMT haha! "Possible Side effects" - one of my pet peeve phrases. Almost any over the counter drug, even that you take, if you look at the insert will list every "possible side effect" imaginable from "upset stomach" to "toes curling" - its called CYA!!! If they list every possible thing that you can imagine, then you can't come back at them and say "you didn't tell me" - speaking of Lawyers.... ;) The real question to me is always what do I REALLY have to be concerned about here if I take this medication, as opposed to "gee I could blame just about anything on this medicine if I wanted to..." how do you know what is a "real, legitimate" concern vs just a cover your a.s blanket warning.... frustrating if you ask me!
chardonney9 - 22 Sep 2008 23:21 GMT >> That's because the regulars on here don't approve of suppliments and call >> them "snake oil" when they don't know a thing about them. >> > Wrong, wrong, wrong. Most of us do take supplements, we just don't bother > with colloidal silver and know that it will not kill the hepatitis c virus. It didn't kill mine but it surely knocked it down a great deal. What is your problem with that? Why keep saying it's "snake oil" when it's actually helpful?
> Personally, I don't give a rat's a.s if you compromise your quality of life > and die prematurely because of your ignorance, but please don't try to > encourage others to do so. You really don't care that I could die? What ignorance? All things you've claimed about me have been false. I figure if you have to trash me so bad it's because you can't show fault with what I actually post.
"level of paranoia about medicine, delusions about snake oil cures and an unhealthy obsession with metal"
I have records of my viral load falling from 14 million down to below 3 million during the time I was taking minimal doses of CS (better named EIS electrically isolated silver) I guess the doctors are having delusions too huh?
Somebody needs to tell the truth here! You certainly are not. Stop talking about things you don't know about. You make yourself look awful silly.
I guess the posts about me getting a liver biopsy and considering their treatment are invisible to you?
With the miserable rate of cure at present it would be really remarkable *not* to look around at alternatives. And Big Pharma does not have a monopoly on cures by any means. It seems you believe that only those big monster companies are able to come up with possible remedies when nothing could be further from the truth. One Big Pharma drug after another has been pulled from the market because of the silly lack of concern by the FDA about properly testing products before giving them to us, and many more are coming. I've read many studies on the serious problems with statins, vaccines,
Because of personal situations I did look around, because I was not able to go through the traditional treatment. It did not hurt me at all. Indeed, I haven't tried all of the most likely cures. I had the time to do that. Indeed, much of what I take has only helped my liver to face this in a much better condition.
You all say EIS is a heavy metal and will kill people when the FDA has absolutely no record of it killing anyone, harming anyone, hurting anyone. Don't you wonder why they put up fake info about EIS when it's factual that there are no records to support what they posted online?
"I don't take direction from charlatans or nitwits, so if you feel the need to keep spamming this group with your nonsense, you should expect plenty of flak."
Who decided that greyhackles is capable of determining who is a charlatan or a nitwit? What are your credentials? What I've posted has been very legit, some published in respected medical journals, some from respected hopitals. I don't think nitwits can do that. The problem is not what I've revealed but that I studied this so much more than the folks on here.
Again, it's just so much easier to attack me than show me real statistics, especially when you have none.
This guy says he's taking milk thistle 700mg alpha lipoic acid 600,selenium 200 mcg which is exactly what I'm taking, and is exactly what four people were given that totally recovered from very horrible cases of hep c.
http://www.janis7hepc.com/Nutrition/Berkson%20Clinical%20Study.htm
Since there is a serious lack of research on here about alternative medicine I'd bet none of you knew that. I can say it did not work for me at all. The EIS worked much better. And there are other things I'm gonna try like oleander soup. I did attempt it once but ran into a problem with the Herxheimer reaction which I imagine most of you have no clue about. I'm gonna try it again though.
http://www.silver-colloids.com/Pubs/herxheimer.html
And I'd mentioned several times that even if they don't cure that they indeed boost your immunity and help your liver better cope with it's deterioration.
I've not resorted to any personal attacks. I just post the facts is all. Too bad several of you can't say the same thing.
And BTW, my biopsy showed stage 2, grade 2. Why you'd intentionally skip over my posts about going to get it done and exploring their treatment is beyond me. Oh yeah, it makes it easier to flame me if you pretend I said differently doesn't it?
Char
TX-012 - 22 Sep 2008 23:27 GMT > You really don't care that I could die? If you died, would you stop posting in alt.support.hepatitis-c?
Sara - 23 Sep 2008 02:54 GMT On Sep 22, 3:21 pm, chardonney9 <chardonn...@notearthlink.net> wrote:
> You really don't care that I could die? If you died, would you stop posting in alt.support.hepatitis-c?
--------------
probably not :(
newbies please note:
you can NOT cure Hep-C by using supplements mentioned in Chardonney's post. you can NOT cure hep-c by using colloidal silver.
You CAN cause more damage to your liver by screwing around and experimenting instead of getting treatment for your hep-c as soon as possible. Please discuss any and all supplements you decide to try with your doctor before putting them into your body/liver. Some supplements indeed CAN be helpful to your treatment, but you need advice from someone who knows what they are talking about, and you need to be careful about combining some of these supplementals -- some things that may not be harmful on their own might be deadly combined with the wrong thing.
Anyone who encourages you to experiment with these substances instead of going with the current accepted treatment plans can only be defined as a crackpot and a troll. It's one thing to fool herself and take chances with her own well-being, but I find it very irresponsible of Chardonney to try to convince others on this list to play games with their health.
Sara
chardonney9 - 30 Sep 2008 14:37 GMT > On Sep 22, 3:21 pm, chardonney9 <chardonn...@notearthlink.net> wrote: > [quoted text clipped - 10 lines] > you can NOT cure Hep-C by using supplements mentioned in Chardonney's post. > you can NOT cure hep-c by using colloidal silver. How would you know? You are very lacking in education when it comes to supplementation. It did lower my viral load, just as fluvstatin does but without the side effects.
> You CAN cause more damage to your liver by screwing around and > experimenting instead of getting treatment for your hep-c as soon as > possible. Not with CS or the other things mentioned. It's well known that they are beneficial to the liver.
Please discuss any and all supplements you decide to try
> with your doctor before putting them into your body/liver. I did that. My doctor supported what I was doing. She was told about everything I was taking.
> Some supplements indeed CAN be helpful to your treatment, but you need > advice from someone who knows what they are talking about, and you need > to be careful about combining some of these supplementals -- some things > that may not be harmful on their own might be deadly combined with the > wrong thing. If you had actually researched it you'd know that the ones I chose are not harmful and can be used with the standard treatments. With the disturbingly low cure rate with conventional therapy anyone who doesn't look into other possibilities is a crackpot.
Char
> Anyone who encourages you to experiment with these substances instead of > going with the current accepted treatment plans can only be defined as a [quoted text clipped - 3 lines] > > Sara Thomas Wagner - 30 Sep 2008 22:45 GMT >How would you know? You are very lacking in education when it comes to >supplementation. It did lower my viral load, just as fluvstatin does but >without the side effects. Viral load fluctuates naturally. It's neither a measure of the function of your immune system nor a measure of the damage done to your liver. It would be impressive if you had decreased your viral load to zero. You didn't. Case closed.
Thomas
 Signature To reach me, complete my last name in the address.
chardonney9 - 01 Oct 2008 00:56 GMT >> How would you know? You are very lacking in education when it comes to >> supplementation. It did lower my viral load, just as fluvstatin does but [quoted text clipped - 4 lines] > would be impressive if you had decreased your viral load to zero. You > didn't. Case closed. Fluvstatin doesn't decrease it to zero either and yet it's excitedly talked about as the next step in treatment. And statins, especially this one, have horrible side effects, some permanent if taken long enough. As if we need more side effects on top of the ones that go with present treatment.
My viral load didn't fluctuate, it went straight down while I was on CS and up when I stopped. If only I had not been so conservative on the dose!
Waterspider - 01 Oct 2008 08:35 GMT >>> How would you know? You are very lacking in education when it comes to >>> supplementation. It did lower my viral load, just as fluvstatin does but [quoted text clipped - 13 lines] > My viral load didn't fluctuate, it went straight down while I was on CS > and up when I stopped. If only I had not been so conservative on the dose! Yeah, yeah, sure, if only. Yeah, you would have been the first person, ever, in the entire hisory of hepatitis C, to be cured by colloidal silver. Yeah, if only. You, Char Donney, are freakin' hilarious.
chardonney9 - 09 Oct 2008 03:28 GMT >>>> How would you know? You are very lacking in education when it comes to >>>> supplementation. It did lower my viral load, just as fluvstatin does but [quoted text clipped - 17 lines] > if only. > You, Char Donney, are freakin' hilarious. Sorry that one went right over your head. I'm not going to dumb it down for you. Try posting about something you actually know about next time.
Char
Holsbergs~Frankie John~Lorianne too - 23 Sep 2008 22:23 GMT Wow!..sure seems to be alot of banter and what sounds like personal judgements here. Greyhackles..I apologize to you for mistaking your name last post. I posted here in the first place for help and guidance from people who have been and gone through what is all new and trial and error for me. I am abit ignorant of my illness..I feel like a stranger in a strange land as of right now..I am not sure of the planned treatment offered to me..I can not accelerate this cirrohsis any more by my own hand..my spouse also with a few health issues that I must take into consideration..there is only the two of us..as far as a support system. I need to maintain my wits..this I do know for a fact..and for as long as possible too!..not be judged as a "nitwit" in my new learning..or looked upon as fodder..I am sick..I am looking to feel better..stronger..I know that this virus is here in me.. to stay..Intuitively.. and realistically. My goal is to support my mind..be damn this body..it`s secondary.I do not want to kill off my mind..or adversely affect my immune system. LA
greyhackles - 23 Sep 2008 23:37 GMT >Wow!..sure seems to be alot of banter and what sounds like personal >judgements here. [quoted text clipped - 14 lines] >not want to kill off my mind..or adversely affect my immune system. >LA Hi again, LA.
First, I actually had to look back to your original reply to me to find you'd spelled my nic "greyheckles" :-) I never even noticed it before - so for sure I took no offense then - and I still don't. Heck, it's just a nickname.
Second, nobody has called you a nitwit - or anything else negative, for that matter. We are actually very sympathetic here to those who are seeking help or advise on treatment or simply how to cope with their disease. My response to your original post was to help answer your questions, with genuine concern.
Unfortunately, your thread got temporarily hijacked by someone with an agenda, which solicited the inevitable responses. This had nothing to do with you - literally. You can pay that no mind and not miss a thing, so if you don't want to get involved in the related banter, just give it a wide berth.
Back to your first follow-up post: it is often difficult to believe that a doctor would have so little knowledge about chronic HCV so as to label "fatigue and insomnia" as unrelated symptoms, but there you are. He's wrong, of course. Those are commonly mentioned effects of the disease, and it's hardly surprising: your immune system is constantly battling a raging viral infection, and that takes its toll on your well-being.
For that matter, your thyroid problem may also be related to the HCV. One only needs to Google "chronic HCV and thyroid failure" to find scholarly articles that show a significant correlation between this disease and thyroid issues.
As for the red spots: there are lots of potential causes, and of course only your doctor can make a proper diagnosis, but at least one cause commonly related to chronic HCV with cirrhosis would be Thrombocytopenia, a severe reduction in blood platelets. You can pretty much rule that out, however, if you have your blood tests, check for platelet counts way below normal range. Otherwise, keep on your doctor to determine what's going on with that.
It's good that you've had ultrasounds taken of your liver. Considering the cirrhosis, I'd expect a responsible doctor would have that done yearly. CAT scans can be helpful as well, but are problematic because of the amount of radiation involved, while ultrasounds are about as harmless as it gets.
The supplements you are taking are quite unlikely to harm you, and may well be helping. There is significant data supporting the use of milk thistle for those not on conventional anti-viral therapy, as well as for various anti-oxidants, as the essence of the damage HCV does to the liver is caused by oxidative stress. Avoiding supplements and food that contain iron is definitely prudent - those are antithetical to taking anti-oxidants, after all.
If asked, I'd still advise you to give therapy a try, if your doctor thinks it is worth the attempt, for at least enough time to determine how well it might work for you. One cannot forecast the response to treatment, nor the prevalence or magnitude of any side effects, of course, but it is the one thing you can do that could rid you of the disease.
Good luck, LA. And always feel free to ask questions - or just blow off some steam - whenever you desire. That's what the group is here for...
/greyhackles
chardonney9 - 24 Sep 2008 01:43 GMT > Avoiding supplements and food that contain iron is > definitely prudent - those are antithetical to taking anti-oxidants, after > all. What about using cast iron pans to cook in?
greyhackles - 24 Sep 2008 02:41 GMT >> Avoiding supplements and food that contain iron is >> definitely prudent - those are antithetical to taking anti-oxidants, after >> all. > >What about using cast iron pans to cook in? You can use cast iron pans to cook all you want. Just don't eat the food...
/greyhackles (hth ;-)
Paul - 24 Sep 2008 16:04 GMT On Tue, 23 Sep 2008 21:41:39 -0400, greyhackles <greyhackles@REMOVEyahoo.com>, in message ID <ei6jd45clukh9513vlp6m5mj5f89dvkm3c@4ax.com>, in the newsgroup alt.support.hepatitis-c wrote:
>You can use cast iron pans to cook all you want. Just don't eat the food... Very good Grey. I'll have to remember that one. :-)
Holsbergs~Frankie John~Lorianne too - 24 Sep 2008 04:02 GMT Greyhackles,thank-you once more for your kind responses.My last month platelet count was 133 it has been as low as 112..this past jan. I will post again another day..as I`m not feeling to spree in this moment..I will make my appointment for that scope to be done within next month..I am still having the pain in my left upper quadrant before eating and after. LA
greyhackles - 24 Sep 2008 05:33 GMT >Greyhackles,thank-you once more for your kind responses.My last month >platelet count was 133 it has been as low as 112..this past jan. [quoted text clipped - 3 lines] >eating and after. >LA No problem, LA. No need to rush around here - we're generally pretty laid back about day to day stuff. Respond when you're up to it.
fwiw, your platelet count is just below the normal range (generally listed as 150K to 450K per microliter) so you have a rather mild form of Thrombocytopenia. Indeed, my doctor would have continued my therapy unless my platelet count had gone below 50K. So I doubt the platelet count would be the root cause of the skin spots.
You mentioned "leaking". Do any of your lab records show your serum albumin level being seriously low? If you haven't been experiencing generalized edema (or worse, as in ascites) I wouldn't expect the spots to be related to your albumin level, either.
Anyway, there are a hundred causes for small spots that look like blood trapped in the skin. If your doctor hasn't noticed the spots you should point them out and see if he can come up with a cause that makes sense.
Hope your endoscope proves negative for varices and you're feeling a little better soon!
Cheers
/greyhackles
chardonney9 - 30 Sep 2008 14:40 GMT > Unfortunately, your thread got temporarily hijacked by someone with an agenda, > which solicited the inevitable responses. This had nothing to do with you - > literally. You can pay that no mind and not miss a thing, so if you don't want > to get involved in the related banter, just give it a wide berth. My agenda is to get well and to provide all details of mentioned drugs. To post only that the vaccines are safe when they aren't is a lie. Why would you all lie about that? Shouldn't decisions on our health be made by weighing the pluses and minuses as well?
Tell the entire story!
Char
anonymousone - 20 Sep 2008 02:24 GMT > On Thu, 18 Sep 2008 02:45:40 -0600, SNOWBE...@webtv.net (Holsbergs~Frankie > [quoted text clipped - 84 lines] > > /greyhackles Grey
Grey gave you good advice. I was grade 3 stage 3 and probably had the virus for 35 years, possibly 40. I had a similar BMI to grey and they had started talking transplant to me if the treatment didnt work. My viral load was 3.8 million. My alt level was 401 and my ast level was 174.
Treatment was successful with few side effects. My alt levels are normal and the doctors say my liver will go back to normal over time.
Here is the secret:
"Again I say to you, that if two of you agree on earth about anything that they may ask, it shall be done for them by My Father who is in heaven"
Thip - 18 Sep 2008 23:46 GMT > Hi, LA here..and this is a first time post here..I was encouraged to > do so.. as I, see that support is truly offered by you folks. [quoted text clipped - 23 lines] > Thank-You..whomever responds for me. > LA Your numbers aren't that great but I don't think the AFP is a huge cause for concern at this point. Mine's been fluctuating from the 50's to the 80's (currently 79.9) for several years. I'm a 4/4, still truckin', still going to work every day (well, almost--need those mental health days occasionally). Some day I'll fall over but not just yet.
You've not been handed a death sentence by any means, so toss that out the window. It's too soon to talk about "the rest of my time." No way to project how quickly the disease will progress, so don't go borrowing more trouble. And do the vaccinations! They can only help.
If I were in your shoes, I'd be asking my doctor what I could expect at the end of tx (assuming you respond) and what you might expect from your liver. It's a magic organ, it regenerates. Even I am not so far gone yet that, if I succeeded with tx, my liver would probably regenerate to the point where I could expect a normal lifespan. I know taking a year out of your life on a crap shoot doesn't sound like such a great idea, but it's better than sitting there waiting for something to go wrong.
And don't put all your hopes on a transplant. Lots of folks need livers. There is no guarentee you'd get one in time.
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