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RE: Trial: Treating Hep C? - 8/30/2008 2:06:15 PM
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solo_soprano22
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She did say:
"The only treatments I've tried medically were the two mentioned above involving Interferon and Ribavirin. Yes, the virus is known to morph very readily, which has been part of the reason they have had trouble pinning down an effective treatment. There are already a number of different types and strains of it out there. Some strains are curable using the Interferon/Ribavirin treatments. Unfortunately, the strain I have is pretty resistant, and I was not given very good odds when taking the treatment. It proved to be accurate, as it did not have a lasting effect. Levels of the virus dropped to undetectable when I finished the treatment, but very quickly jumped back up into the hundred thousands and have continued to climb."
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RE: Trial: Treating Hep C? - 8/30/2008 2:11:47 PM
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selahgirl
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Thanks for your thoughts, concerns, and encouragement.
I have tried everything my medical professionals have suggested since 1993 when I was diagnosed, but they have said that there is nothing more they can do unless a new treatment is discovered. Or maybe to repeat the year of Interferon-Ribavirin and increase the dose. My local specialist has treated me since my diagnosis, and when the treatment failed this last time, he referred me to specialists in Nahsville TN at Vanderbilt. I kept that appointment and was told that my case remains a watch and see, with the possibility of the more aggressive treatment mentioned above when my levels peak again. He said his office would schedule me a second liver biopsy to measure any changes since the last one in 1994... but I am still waiting to hear from his office as to when that will be scheduled. He said it was no rush.
This treatment has helped friends of friends with Hep C by drastically reducing their viral loads. It has the FDA's approval as safe for human consumption, and the side effects are supposed to be minimal. It seems to be a very low-maintenance treatment that could have huge results.... maybe not. But is seemed worth a try to me.
No I didn't consult my docs... they have never supported natural remedies (understandably, as they deal in tried and tested treatments mainly, and with med companies). If I felt the treatment was a risk that could worsen my condition I wouldn't try it. But as it stands, my understanding is that the worst it could do is have no effect at all. If the medical community had some hope or effective treatment that would help me... I would try it. But they don't.
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RE: Trial: Treating Hep C? - 8/30/2008 2:25:42 PM
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selahgirl
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To give you an idea of the cost of meds:
I was taking one shot of Interferon a week, which was $500 for each shot... $2,000 a month.
At the same time I was taking six pills of Ribavirin a day, which was $2,000 a month. That's $48,000 minimum, for a year of treatment. I don't know how people without insurance get treatment. Even the fraction of the cost that we had to pay was stressful. If they put me on the treatment again and up the dose, it will cost even more than that.
Not to mention the other costs of dealing with the side effects, such as taking Benedryl and Tylenol with each shot to reduce the pain. Feels like a bee sting. And the insomnia meds and other costs that come up.
The treatment I am trying now is $480 for a year. That's $40 a month. Still challenging to squeeze out of the grocery bill, but I'm going to try. The friend who told me about the treatment, actually paid for the first month for me just because she believes in it that much. So we'll see where it goes from here.
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RE: Trial: Treating Hep C? - 8/30/2008 2:28:20 PM
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IonMoon
Posts: 918
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From: The Unted State of Confusion
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quote:
ORIGINAL: selahgirl
A friend began telling me about this new remedy that is helping a myriad of diseases.
This is usually a red flag when it comes to natural treatments. It goes back to what Solo_Soprano said about what is the mechanism at work... every disease is different and treatments (standard and alternative alike) work for some reason.
I am interested in reading of your experience, though, and think this is a great idea to journal it. Also, if I had a medical condition that was not responding to traditional therapies, I would also use alternative methods, even if I was pretty sure they wouldn't work. If there are no real side-effects, and you aren't stopping traditional medical treatments, then the only thing to lose is money, I suppose.
Tara P
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RE: Trial: Treating Hep C? - 8/30/2008 2:35:11 PM
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Kat_D
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quote:
ORIGINAL: selahgirl
To give you an idea of the cost of meds:
I was taking one shot of Interferon a week, which was $500 for each shot... $2,000 a month.
At the same time I was taking six pills of Ribavirin a day, which was $2,000 a month. That's $48,000 minimum, for a year of treatment. I don't know how people without insurance get treatment. Even the fraction of the cost that we had to pay was stressful. If they put me on the treatment again and up the dose, it will cost even more than that.
Not to mention the other costs of dealing with the side effects, such as taking Benedryl and Tylenol with each shot to reduce the pain. Feels like a bee sting. And the insomnia meds and other costs that come up.
The treatment I am trying now is $480 for a year. That's $40 a month. Still challenging to squeeze out of the grocery bill, but I'm going to try. The friend who told me about the treatment, actually paid for the first month for me just because she believes in it that much. So we'll see where it goes from here.
I'm sorry for all you've been through and pray this treatment is beneficial for you.
May God's richest blessings be yours.
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"...And God will wipe away every tear from their eyes...no more death, sorrow, nor crying."
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RE: Trial: Treating Hep C? - 8/30/2008 2:40:02 PM
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selahgirl
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Hep C is a virus. You can actually be infected with it, and your body's immune system can fight it off. However, it kinda scars your blood. That means that any blood test after exposure will reveal that you once had the virus, even though it's not active and you have no symptoms or risk of infecting anyone else. The marker is six months. If your body can't fight it off in six months, then it is labeled as Chronic Hep C, and is considered incurable.
The Interferon/Ribavirin treatment is claimed to cure some people, but it is so new. There hasn't been enough time that's gone by to know that for sure. It is believed to have cured people because no active virus shows up in their blood. However, medical tests can only measure to a certain level for the virus... so a zero reading is actually a non-detectable reading, which means some of the virus can still be active in your body but it's just not showing up. That was what happened to me when I finished the year treatment. Tests showed no trace of the virus, but there was actually a trace amount that began multiplying again and spreading thru my system.
People that maintain no detectable amount for a year or so, sometimes end up with it coming back eventually. So it's not known what or if every person has a relapse period. Time will tell if it's really a cure for some people.
The current treatment I am doing affects your immune system in a unique way. If it's possible to help your immune system get the upper hand over this virus (which would be very difficult), then there is a chance you could very well kill off all living remnants of the virus and be cured. I would love to see the medical community work with the natural remedies camp to come up with a way to perhaps combine such treatments and actually wipe this thing out. I don't know if that's possible, but no one will ever know until they begin to respect one another and work on some trials.
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RE: Trial: Treating Hep C? - 8/31/2008 9:46:11 AM
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selahgirl
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Day 13 (8-30-2008):
still not much change, though my energy was a little increased. The ache in my blood seems to have let up some and is back to the bearable stage again. Thank goodness.
I missed two out of three doses. Things were really busy and I just absolutely forgot. Took the afternoon dose but missed the morning and the evening. yikes. I may need to do something different on the weekends so this doesn't happen again. During the week, my routine is set to our school schedule (we homeschool), but the weekends are crazy with activity. I had a pill pack with the interferon treatments, so I always had my meds with me when I was on the road playing taxi or away from home.
In 1993, I had my third child, and was diagnosed with Hep C. My oldest child was five years old, and it was our first year homeschooling. He is in college now, and my baby is 15 years old. God has been so gracious in making me able to care for my family. We keep their social calendar very full, and teens are always coming and going in our home. We actually had a houseful playing Halo 3, system linked, last night. Most ended up camping in our school room (back room of our home) for the night. haha.
so despite living with the virus... life is Good.
God has greatly blessed our family.
^_^
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RE: Trial: Treating Hep C? - 8/31/2008 12:49:01 PM
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solo_soprano22
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(Replying to something above): I think everyone needs to realize that no matter how good an immune system is, viruses are programmed to outsmart them and reproduce. By the time it recognized the unmutated virus to kill it, the virus has changed again. The outside surface will mutate as many times as it needs to to stay alive, while keeping the "important" protein sequences conserved. (I'm sure you already knew that, Selah; I was saying it to others.) That's one reason why the body can't rid itself of something like HIV; it's hard to fight well because it hides and changes. Even if you're strong as nails-- if you have no clue what to fight against and that something bad is even there to fight, it's not so good. I wonder if there's a way to keep a virus from mutating. I know they usually don't have polymerases (some do though), and that contributes to mutation. But if their sequences can be found out and stopped from mutating, they can be treated far better.
On another note, I think the scientists studying herbs should try to figure out how all their herbs work in detail. If you have an herb that can cure HIV, for example, it's a good idea to know why and how it works. I'll give an example below, but that's a good starting point. Some drugs are based on herbs. Herb x out there is known to do y.... why not figure out what's in there that's doing it and formulate a drug based off that (or isolate that element)?
When I was a new sophomore I had to pick and herb and prepare an oral report about it. It was suspected that it was responsible for the apparent low rate of Parkinson's in India in ancient times. We'd already developed a drug in the States to help Parkinson's. Turns out that finally someone actually tried to figure out the herb instead of being in the dark about why it worked (and the herb had some funky side effects that the drug didn't), and it turns out that the isolated drug in the States was contained within the herb that the Indians had been using. The reason for the side effects of the herb was all the extra ingredients it contained (the "pure" drug was only what is synthesized in the body that's missing in Parkinson's; the herb has that, but it has extras as well). Once a person figures out that something does seem to cure something, they need to set out for the reason why-- herb, drug, etc. It very well may be that there's some ingredient that cures a disease, but another ingredient within the same herb that shuts off a vital pathway (for example). It happens to drugs as well... thalidomide is great to treat leprosy and as a sedative, but it also has another mechanism that's devastating. Thalidomide did have a hand in making more vigorous rules that the FDA put out (they could stand to be more demanding still). Odd thing is, having done a big project on thalidomide, had the scientists and researchers behind it actually investigated things before they put it out for consumption things like that wouldn't have happened. Drugs and herbs many times aren't the problem...even with thalidomide. The problem there was the people behind the drug, and the decision to get it on the market before they knew mechanisms (and side effects). And I understand why people want mechanisms and research now...although I would have expected it all along, for both drugs and herbs. The unknown mechanisms (or side effects) of something are the very things that could damage or kill a person. (For example, there IS a mechanism in thalidomide that treats leprosy well today...but also one that thwarts formation of limbs and organs enough to kill a person...and there IS a mechanism in the herb in India that helps Parkinson's, but there are also several other mechanisms that can kill you or a baby.) But things can only be discovered if we set out to research them, and that goes for herbs as well. That's the problem people usually have, and it's solvable.
Maybe we should start a separate thread about it, so we can leave this one just for Hep C treatment. I might start another one later if I think about it. :)
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RE: Trial: Treating Hep C? - 9/1/2008 11:48:01 AM
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selahgirl
Posts: 1235
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Day 14 (8-31-2008):
Officially two weeks.
No noted change from the start of the treatment.
No marked changes from yesterday.
Sinus cold remains, Nexium meds are still needed, and insomnia continues.
Altho, Hep rash has remained calm, minor flare ups at night. It usually cycles anyway, so it may or may not be related to the treatment.
With the interferon, the Hep rash had more frequent inflamed episodes, even during the day. My doc said it was my body casting off dead virus cells, and my skin attacking them thinking they were still alive (the skin is part of the immune system). Such episodes have always occurred, but they escalated and intensified during the interferon treatment.
My understanding with this new treatment, is that the virus is gradually pulled out of the body and exits when you use the restroom. Supposedly reducing the level of virus in your body, at the same time that it stimulates your immune system to attack the remaining virus. Not in a sudden jolt, but thru a slow and gradual process.
.
< Message edited by selahgirl -- 9/1/2008 7:44:00 PM >
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RE: Trial: Treating Hep C? - 9/1/2008 1:21:15 PM
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selahgirl
Posts: 1235
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I'm sorry to seem so mysterious about the specifics of the treatment... but the minute you name such things, the nay-sayers jump onto the thread and begin ripping it apart with articles and statistics and the like. I just want to focus on whether or not I'm improving concerning my sickness.
After some time has passed and I can tell if it's having an effect or not... I'll explain it in detail. You are supposed to notice minor changes after about two weeks, but it takes 2-3 months to really notice significant changes in energy levels. Even if the treatment isn't effective for me, it has already helped other people. So each person needs to decide if they wanna give it a try.
Same as the Interferon, it did little to nothing for me, but it is believed to have cured others. So whether medical or natural treatment... some people get better and some don't. Whether this treatment helps me or not, it's more my specific case than the effectiveness of the treatment. But I will be able to say whether or not I found it effective for me, and then people will need to make their own decisions. I'm not here to promote a product, I'm just trying to get well and to encourage other to keep searching for wholeness.
The interferon failed me... but no one is discouraging people from giving it a try.
Even if this treatment fails me... I still believe that it can help some people.
Throwing away $480 is a small investment compared to the $48,000 that was thrown away for the interferon treatment. It seems to bother people when someone is offering a natural remedy at a certain cost, but they care so little about the inflated cost of medical treatment and meds. Often times people turn to natural remedies, because they can't afford professionals in the medical community. I have turned to the natural treatments because the medical professionals have been unable to help me. Perhaps this new treatment will make a difference. If not, I will continue to move forward in it where ever God leads me.
I just want to eliminate negative, discouraging voices as much as possible (especially early in the treatment). And if I name the treatment in it's early stages, it will only open the door for such voices to be more vocal. Not sure if that makes sense, but helps me to keep a more positive outlook during the process. Thanks ^_^
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RE: Trial: Treating Hep C? - 9/1/2008 5:42:59 PM
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solo_soprano22
Posts: 2473
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Eh, I'm not sure if you were replying to me, but I'm just wondering how it works, not if it works or if it has worked in the past and all the details. I'm wondering how anything causes a virus to be excreted and recognizes the mutated virus quick enough to catch it all the time before it mutates and outwits the immune system. It's cool if you don't want to answer... I don't think anybody is asking for a name or anything like that to figure out what it is. They're asking why it works. I think if you want all support and no criticism in the thread though, you should get someone to edit that into the OP. That way if there is negativity/criticism then it can be labeled off-topic and a moderator will get it. (Or maybe start a blog in the forums.)
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RE: Trial: Treating Hep C? - 9/1/2008 7:36:27 PM
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selahgirl
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yeah, maybe ur right.... I'll move this to my personal blog on myspace. Thanks.
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