Alternetive tx and other posts

[snook_man]

I just want to make a post to get everybodies input on supplements.. The post below, on milk thistle is maxed, and I wanted to respond to MikeT..I am sorry to hear your disbelief..The chinese live longer than any race on the planet.. They eat healthy, and take herbs and supplements to fight disease and sickness..These herbs where put here for a reason, just as you and I where..Just as dogs when their stomach is upset, they sniff out the right grass to eat or comfrey to sooth it.Do not be niave to supplements, which do not have the billion dollar funding backing them like pharmacutical companies.Don't get me wrong, I know that alot are BS as stated, but that is where the proper research must be done.In China, just like we have the CDC, and FDA, they have their own .Their studies and approved tx for hep c is with combo of mushrooms and supplements..WHICH HAS PROVEN RESULTS!! It does not state a cure, as interferon,does not state a cure either!! There is no magic bullet, to kill the dragon, but many ways to suppress it.We all live with this disease, and information is the key!!New studies show that simple vitamin E and C taken daily, improve liver fibrosis!! Again, Dr.'s would not make money, if they told you take a vitamin instead of a drug they hold stock in.Everybody benefits, as medicine causes sx,that need more Rx,then peg causes permanent other illness,that requires whole different course of drugs and tx..Who profits, You or the Dr?
Friscosue, and tallblonde: I am very interested in your alt tx regimen, and how it has effected your blood results..

[MichaelT]

Reducing inflamation is not reversing it. Aspirin would do the trick.

You mentioned "belief" in an earlier posting and that is just the effin' point, man! People take stuff on "belief" and not evidence.

Don't know how old you are, but there was a big splash about the Chinese performing an appendectomy w/o anesthesia, but accupuncture. Why isn't this being done universally today and avoiding the risk of using general anesthetic? Is it a conspiracy? No! Doesn't work! The poor patient suffered like the damned!

Don't lay on me "facts" about China - people that aren't enslaved or killed by the gov. are the product of one sick Darwinian experiment.

Evidence. Repeatability. Withstands scrutiny. Alt. Tx. fails miserably over and over.

Look this isn't personal, I'm sure you are a fine person, it is just this pervasive and irrational belief in naturopathy, homeopathy, healing touch, reiki, and other such stuff is a cruel, cruel scam on people that are desperate and suffering.

Anyone has kick-*ss treatment? Notify the NEJM, JAMA, take it to Hopkins, the Mayo. you will be famous and have the gratitude of millions!

[snook_man]

Man, you still have some lingering Riba rage, or you should try to wear boxers instead of tightie-whities, as they are restricting necessary blood flow to brain!! Obviously you have done your research, so you know that there ARE proven alt tx that reduce inflamation. It is the inflamation that causes fibrosis, and liver disease. If you can take supplement to suppress this instead of poisoning your body, and causing severe sx's, and permanent damage, Why would you not try? I myself have not tested theory, or found a specific regime that works, but Damn if I am not going to try! I know my blood levels, and have been taking supplements for a few months now, no alcohol, and will soon have blood work done to test my personal trial.I myself am not against tx as I did try a few weeks ago, and sx's were severe, and doc pulled me. I will definatly try again, not today or tomorrow, but soon. In the meantime, I am changing my diet, excercise, no alcohol, and taking supplements. My VL is only 5460, so my body must be fighting this thing. I too hope for a new drug or combo for tx, but do not believe pharmacutical companies have cure in mind. They make too much money off of treating it. The company that has almost all patents on research for HCV, I believe it is Chiron, is holding monopoly on research, and will not share findings. If they had the intention of progress in mind, they would share their findings with others, and combine theories to put end to epidemic.If the FDA had good intentions toward HCV infected people, it would force the issue. There is a stereotype for people with HCV, and we are looked down upon.Education is the key, and it is personal trials to find what works for each of us.

[MichaelT]

Uh, that was the herb I mentioned. I was the first to post on it right here in downtown medhelp hcv-ville. Improving cirrhosis is an unsubstantiated claim. Reducing liver inflammation? - preliminarily it looks promising. Cure for the HCV - NFW. Cure for cancer - NFW. Much more time and study is required to make those kind of claims.

Sorry to be so harsh, but, damnit, I'm sick of people being seduced away from rigorous scientific evaluation and taking drugs just because "someone said so."

I did the interferon-based treatment and suffered mightly - not as bad as others and certainly not as bad as those folks with a couple of retreatments under their belts. I want and pray as much as anyone that better treatment comes along - if it initially comes from a plant source I will be the biggest promoter of it, I don't care where it comes from, I just hope something better occurs that others don't have to spend a year(+) in the hell that is INF + Riba.

Please, indulge in homeo-sympatheticmagic-apthy if that is your wish, but do not represent it as something it is not, such as valid medical treatment.

Dear friends I have done my research and the conclusion I've come to is the best we can do is good diet and exercise, supplement where deficient, and medical treatment if it is truly necessary and don't take unregulated "stuff" with unknown dosages and purity from ANY source. God bless you all and peace.

[snook_man]

Thanks for responding. I love to hear different views. Obviuosly, we are both set in our ways. Would ask to do a search for a drug called, sho-saiko-to, or TJ-9. This combo drug being used in China has reduced Chirosis by 25%. Has been linked to reducing liver cancer and advanced disease. Leading cancer center hear in US is recruiting for clinical right now, to substantiate proof, to US market. If you remember that interferon is a substance produced by the body naturally. If you can give immune system boost, it stimulates higher production of substance. I know what you are saying about some dangerous drugs, but again, that is when research is necessary. Most are for warnings against people with high blood pressure, or kidney problems. You state that herbs have sx's, but conventional tx list 30 or 40 possible effects. Some permanent! The reason that you experience these harsh reactions is that you are shocking your system, in turn poisoning your body. You may clear virus, later to suffer from from newly acquired illnesses brought on by tx. Both sides are risky, but that is why this country is the best, democracy. Everybody can have their own view, and decide what is best for them. Best wishes.

[MichaelT]

Look, how many people have to suffer renal failure or be otherwise poisoned by "Chinese Herbs?"

On this subject I have carefully stated my position in the past - basically if it does no harm, have at it.

Unfortunately people get sucked into a belief system that causes them to suspend rationality when sticking substances into their mouth or colon, whatever in the name of "alternative" medicine.

I have heard all the arguments and they too are BS. What you are doing is taking drugs, drugs that have not been rigorously evaluated by themselves nor any interactions; drugs with unknown purity and dosage. This is a new age russian roulette.

I have reported on an herb that produces a chemical helpful in reducing inflammation. I'm not close-minded as some would write, but cautious about outrageous unsubstantiated claims. If it works, it will work in a controlled study.

Oh, by the way, has anyone read that anti-oxidant vitamins are beneficial for only part of the population and harmful to the rest?

Come on! Be responsible! THINK!

[honey1616]

Hey there,,,Been wondering where you have been and Hoping you were feeling good!!  And enjoying your tx free life!!  haha I love it..."fatigue area" that is roped off!! LOL  We would have a lot of hyper people all talking at once and then some would start dropping so we would have to escort them to the "arena" haha  Gallons of water on hand,,,Wet rags for overheat,,,walkers for achiness ROFL   You are so much fun Lady and don't forget us back at medhelp haha

[Showboat]

Thanks, GirlFriend.  I am glad to be back.  Wish I could say that my leave of absence was from the joy of stopping tx and all of the fun things I could start doing, but I really had a go of it.  It seemed that my fatigue came back with a passion, and all of the sudden I was filled with that stupid riba rage again.   I had been pretty much free of the rage for months, and "BAM" it hit after about one week of being tx free.  I spent most of that time sleeping and feeling sorry for myself, and I hate to admit....I was "nagging" at my poor hubby. (Poor guy, we were in the process of having new flooring put in the kitchen, and dining room and painting those walls too....I usually stayed far away from "the working area"  It surprised me because I thought I would be okay.  I think I actually had a few days that I felt worse than when I was on tx.....  Thank goodness he understands completely, and we would always talk about it later.  And then the headaches everyday for 2 weeks.  THE GOOD NEWS is I think all of that is over now.  I am feeling pretty darn good and I have also stopped taking my 1/2 ambien and 1/2 trazadone nightly for sleep....so, I am now "drug free".
I wake up quite a bit at night, but it is "do-able".  I plan to stay here at the forum (my second home).......I love you guys!!!!!!!!!!!!!!!!!!!!! (((((((hugs))))))

[Showboat]

Snook:  Yes, I can verify the fact that Chevy brought her blanket into the computer room.  :>)  The extreme fatigue can hit at anytime....although, I think Chevy was always able to finish a sentences.....hahahaha...Snook, take it one day at a time.  I think you are doing the right thing in gathering all the information you can on HCV, and getting your body and mind ready for the next time you treat.  This is not just a "walk in the park"....

Chev:  Hahahhahah.  I remember that.  I am just glad you never fell asleep mid-sentence. (lol)  You are almost finished with tx!!!!!!!!!! Yahoooooooooo!!!!! Is it 6 shots left?  I felt the same way as you do as tx comes to a close end.  I really looked forward to shot day just to get the next one over with, BUT, for me, I hated doing the "deed"...the actual stick was a heart pounding, sweat pouring experience....but hey, I am done, and you will be done soon too. Party time......(hey, how cool is it that you and Indi met.....I think that is really wonderful)

LvdbyGod:  Hello, sweetie.  I read your post and questionaire to Chevy about the "little one" and the adoption process.  You really are too cute.  I think you are a gracious human being.  To care so much and to take such great and loving care with these babies.  You are really doing a wonderful thing.  When I lived in Los Angeles, my room mate and I (my best friend) used to rescue the kitties in our neighborhood. Once, we found two that were rejected from the momma (one was a runt, and the other had a paralyzed back leg) We took them to the vets, and I had to hand feed the runt with an object very similar to our syringes (without the needle)   The med/food was the consistency of peanut butter....poor little baby.  I only had to take care of these two, and that was a handful......you have an entire litter....God bless you.  (my kittie, Mr. Will aka Little Will just jumped up on my lap....he likes to press the computer keyboard.....I have learned alot about my computer from him (lol)...........

Eyedeas:  Have been thinking about you and how yesterday's Blessed Union was.  Did you eat that piece of cake for me?  I actually went out and bought myself a piece of "wedding cake" to eat in you and your daughter's honor yesterday....(and because talking about it made me CRAVE a piece..........I am still craving the sweets 3 weeks after stopping tx....hope that stops soon)  Please let us know about all of the beautiful and humorous events that took place, and again, congratulations.

All:  I am catching up on reading the posts, and wow.....alot of stuff going on.......birthdays,children, new granbabies, newbies, horses, kitties, doggies and wonderful support and web site information going out to everyone.....I missed you guys!!!!  That will teach me to not miss a day (or in my case, days)......there is ALOT to catch up on.  My energy level is coming back.....thank goodness.....and with it, my focus is better, so reading is much easier.  I agree with whoever said we should decide on a "meeting place" and have one GREAT BIG PARTY!!!!!!  We can even make sure that we have a "Fatigue Area" roped off so that when one of us "go down" we can still sort of be at the party......tee heee......I personally would love to meet you people too.......Take care  

[audreywald]

My doctors said they will probably recommend milk thistle in the near future after it has received FDA approval. I find this unusual from regular american doctors.

I started taking it when I was first diagnosed - 7 years ago. At that time I was a grade 1, inflammation 1-2.

Seven years later my biopsy is not worse.

[cuteus]

pegasys does come in pen form, but I prefer to draw the liquid myself(there is no mixing) because I can overfill the syringe with the extra med. my preference to inject as much interferon as I can.

[snook_man]

LoL. Yeah, need a briefcase, but Dr. will know that I am serious!! I love the support that all you give, as it does give me encouragement. I know that all sx's are not just tx related, but are blamed on tx for an easy explanation. Yes, I have made alot of changes in my life recently, and body might be kicking out toxins. Took one of those internal cleansing kits, and tried to rid body of some of the toxin build up. What I need to do now is cleanse the mind before restart.Thank you.

[snook_man]

Good morning. I am on antibiotics for strep. It is gone already. They gave me the Z pack. Some strong stuff. I know, that I do not need all my info right now, but I am just addicted to educating myself.I see the post above by gongetbetr, and she weighs more than me, and on same dose of peg. Maybe that is why I had such a strong reaction to it.I have alot of questions for my Dr. He will probably tell me to stop stressing internet info, as bad info post more than good. I am glad to see you going to sleep at reasonable hour, as some of your posts are very late. Sleep helps soothe the mind. I am just feeling really bad, that I thought I was ready for tx, and washed out. I like to complete things that I start.I really need to get some of pressure off, so that I can face this thing commited. I really like what new sojourn said above, about just doing it!!
I was wondering also, that you are on pegysus right? It does not come in a redipen corresct? So you have to draw the correct amount from vial and mix yourself??
I am going fishing tonight, to let off some steam. Have to ease my mind for a few minutes, I am doing way too much thinking!!
Thank you, best wishes.

[cuteus]

I must have missed the fact that you stopped drinking in March. I guess starting strong hcv meds a few months later was a great shock to your system, I would take a break also, but continue what you are doing, arm yourself with ammunition for the next appt, and take your vitamins.  Go back and print any pertinent study that tnguy, scott, willing and others have posted for us.  i  now have a folder full, because I am trying to extend my tx further.  studies say that low vl should respond faster than high ones, but the variants in my virus must be resistant because I did not clear until 5-6 months into tx.
as for the Pegasys been easier to tolerate; back in 3/2003 when I first started reading the forum, many comments were made as to how it was easier to handle than their previous treatments, that is why I chose it.
Plus it shows a slight advantage towards geno 1 in some studies.
  Print out the Tarantino and the Teravic 4 studies tnguy posted links for, it focuses on tx for geno 1.  If you can't fully trust this dr., get that second or 3rd opinion.  I am on my third GI, but make sure you keep copies of every blood work and tests for your records. The next practice might need to be reminded of some facts, and that is our job to do, to make sure they keep accurate track of things.
The sx do stabilize for most of us as tx goes along and many of these problems you hear us complain about, were here before the meds. for me, the meds have enhanced them a little, but I Know  they did not caused my carpal prob, my joint aches, etc. I like chev's, twotells and others style of telling when the problems they are now having were there before, to remind the newcomers that ALL our problems are not due to the meds.  Indy keeps reminding us that tx does not = long term side effects in every case, another balancing case, so that you and others get an accurate picture.
  I am so happy you are now concentrating in strenghtening your physical and mental health in preparation for a cure,  yes, drs ARE talking of hcv CURE, not only suppression (another tnguy link posted before) and I believe it.  Cancer is curable and so is hcv.
You might need a briefcase by the time you finish printing your written ammunition, but it will be worth it.   be well

[snook_man]

Words of wisdom, I thank you and take to heart. I do have my own battle going on, as each of us do Mine is in trust, and it will take my info gathering to resolve.I believe that this forum is a place for info, and that is why I am drawn to it.I can come hear and read first hand what is happening with real people that are in same situation.Truth is cleansing in itself.Tx is a major decision, and I did not have enough info before hand.This time I am preparing for battle.Hands down, peg till I drop!! I want this thing out of me. I owe it to my wife, and my 2 new little sisters.Yep, at 57 my father just had 2 little girls. And you guys think you have it bad. LOL.He is changing diapers instead of retiring.
I did have an invincable to the world attitude, till reality of bx came back.It was a low blow, and I'm still trying to get up.Then this whole back situation came into play, and tried to knock me down again.Right now, I'm feelin my second wind building, and it is coming strong.I do talk alot, but talking builds confidence and character.Alot of what I am going through is unexpressable to wife and family, as they do not understand, so I apologize for being so vocal today.Hope atleast it made for a better understanding of where I'm coming from.Best wishes to all!!

[derail]

there is no age wher you aren't prone to back injuries, it can happen whenever, again depending on how and what you're doing at the time. If you not getting the answers from your doc for the reasons he stopped tx after 1 week, its definitely time for a second doc. remember they need to know as much about you as possible; it all helps in dx and the course of treatments. as to hating docs. you have to go a long way to top my views most i consider pompous asses; but my current GP is ,A normal person surprise surprise. Like you i was a partier in my youth and beleived i was invincible (o ye of little faith) I knew my body better etc,. and 2 aspirins and rest would cure it all.BOY did I get a wrong number. the most important thing in all this is forewarned is forearmed. Go ahead but with your eyes open and ask questions until YOU are satisfied then think about it and ask again. the only stipid question is the one not asked.
alll the best and we'll be here to support you ..Daryl

[snook_man]

I am not on a conspiracy theory, but just look at it truthfully.. It is like every other business,it is in business to make MONEY. I am sure that there are good Dr's out there, that work at community hospitals for less pay, because they like to help people, but most are in it for the lexus, and the prestige.If all my sx's are common, and to be expected, why did my doc pull me so quick. Why not rough another week or so.I repected his decision, and followed his orders, even though questioning his reasoning..
As far as drinking, I have not had a beer or any alcohol since March.. I will never touch alcohol again. In the past I drank alot, as I am a young man that loved the keg parties.I did not drink 2 or 3, but 20 or 30 in a night. Two of us would pound a handle bottle of rum, and take a xanax.. That lifestyle is gone.. So if you doubt my sincerity toward change, I am sorry.. I am on a quest to inform myself with every slice of info possible on my disease, AS DOCTORS HOLD BACK, unless YOU ask.My depression is is a testament of my sincerity towards recovery.. It is hard to face this at such a young age. I just got married last year, have my own house, two cars, two dogs, a mother that I help out, and a brother in law that can't wipe his @ss w/o help. Besides that, I blew my back out at work, and was told that I was to young to have back problems, sent to physical therapy by Dr, and sent back to work.. A month later, collapsed at work, had tingling in my legs, and could barely walk. MRI came back herniated disk, and buldging, with narrowing of spine.But yes, as Dr said, I am too young to have back problems.Other than that, I am just facing life one day at a time.

[Tallblonde]

P.S.  You say you drink a lot.  That's not a smart thing to do in your situation.  Please try giving that up immediately if you're realkly serious about improving your chances for treatment success.  All the herbs in the world can't compensate for the damage you're doing by ingesting alcohol.

Susan

[Tallblonde]

I'm not a big fan of doctors either, but I have to tell you...you're sounding a bit paranoid to me.  I really don't think there's this big conspiracy going on among doctors to keep people sick so they can make more money.  Forgive me for my bluntness, but that's just absurd.  

Susan (who happens to think that both of her GI's are creepy, but isn't ready to jump on the Snookman conspiracy theory bandwagon).

[snook_man]

I know that everything works for certain individuals, but I want to do whatever possible.. I am not very confident in my Dr. now as he pulled me off first week. I do take vitamin c 1500mg, vitamin e 800iu, milk thistle 500mg, alpha lipopic 100mg, selenium 200mg, and a few other supplements a day.I have been taking these for say two months now, but Dr. did not do new blood work before tx, so I do not know if they reduced anything. I am going to tx again, don't get me wrong, but want to know that I am on best svr% med!! I just need to relaxe, and take some of the load off my back right now. As far as smoking weed to suppress Sx's, I think I wouldn't get up. It would probably calm my nerves a little, but damn if I wouldn't be stuck on the couch!! Dr. wants to reduce my dosage, but that decreases svr. Why risk for lower %. See, I am a high stage 2 fibrosis, risk at 3, as suspicion of bridging.. I also eat unhealthy, do not excercise, and drink alot. I am 26, will be 27 in July, and figure I should try to do natural cleanse for six months and see if I can stabilize my alt's as they are only 82. Agt's, are normal.
It is just hard for me to trust in a Dr., that is in the business to make money. By this he prescribes meds to make things tolerable. If he gave you a cure, he would be out of business. Medicine, is a business, simply put. If they developed cures and vaccines for viruses and diseases, population would sore, and Dr's and pharmacutical companies would be out of business.
After being dx, I went to an allergy Dr. to see if he could fix allergies. He told me that I had deviated septum, and surgery would fix all my problems. Damn, did he put his foot in his mouth!! three surgeries later to stop bleeding, 3 days in ICU, and nothing is better. Still have all the same sinus problems and some are worse.
I will probably not even get a break from tx, as I go to my Dr. on the 14th, to discuss tx options. My wife wants me to restart, on whatever doc recommends. I am going to place a folder of research in his hand, and have him give me his opinion on everthing. I want to be 100% confident in my decision, before facing the beast again. However I face it, I will be doing some dragon slaying in the immediate future.. Thanks, and best wishes

[new-sojourn]

Well, why not do both?  or all?  I was as bad off as mike (see above) w/no $$ or insurance so I started on nutrition (basic liver failure diet-low protein, no fat, no salt, whole food, organic) and eliminating old habits, added herbs-chiness and naturapathic and moved on to the exotic supplements-joint juice, SAM-e, alpha etc.  Then I got into a study, did tx, cl'ed in 18 days.

So, I'm in favor of doing it all.  And I'm still alive and take no meds @all now.  I'm still working w/a very diseased damaged liver and have to stay on basically the same regime for ever.

I'm sure the total approach (incl meditation and exercise) helped me heal the damage, make the most of the tx and continues to keep me alive.  BUT, it did not cure the virus.

As to what and how much to take, that's individual.  Tallblond's suggestions are a good start.  I use massive more amt's of  many of the herbs & suppliments.  I beleive in the top end of suggested use, and rely on Dr Andrew Weil's recommendations.  So, i think 1200mg of milk thistle and SAM-e are more in the range needed.  Also, I drink gallons of green tea w/ginsing and organic honey daily.  Right now, I'm into fewer supplements and more fresh farm produce and juicing.  I think its good to rest from a heavy vit/min/sup regime, esp during the summer.

Give yourself a few months to build up the depleted and missing things, then just do one thing-tx.  If you're tired rest.  If food makes you sick, move to a liquid diet you can sip all day.  If your depressed-roll a joint and watch really bad tv.  Take your vit/min in small dosages-not one massive pill of vit c, 4 little ones spread out, like that. It's nearly 3yrs since my bleed, 2 hep c free.  So, what I'm doing works for me.  Discover what works for you.

[Amerabrit]

Whatever the reasons for your body's success at fighting off this virus, I am so happy for you.  You must be doing something right?

[Tallblonde]

I forgot to add that I also drink at least two cups of white tea a day (Wal-mart sells one by Celestial Seasonings), and eat at least a half a cup of plain yogurt (Dannon Premium).  I also eat tons of "liver healthy" fruits and veggies (and especially avacado and cherries).

Susan

[Tallblonde]

First, let me say again that I don't know if my recent improvement in viral load and enzymes are due to the supplements and vitamins I've been taking.  On the other hand, I'm definitely not going to stop taking them, just in case they are the reason!

Second, I think Mike Simon's point is a good one.  Perhaps these supplements and vitamins have more impact on cases that are less advanced.  Maybe that's why I appear to be benefiting.  My VL was low to begin with, and my liver biopsy revealed no fibrosis.

By the way, I haven't ruled out treatment prior to my next biopsy.  If my symptoms become worse, or if my enzymes and VL begin to soar, I would definiately think seriously about doing treatment immediately.  But it seems reasonable to me to wait and see if my body has the ability to fight off this disease on its own.  My VL is only 1,580 I.U./mL -- a 93% decrease from six months ago.  Something's happening. Maybe I'm still in the "acute" stage and have a chance at clearing this virus.  I know the supplements don't have the ability to kill the virus, but maybe, in my case, they're giving my immune system just enough of a boost to make a difference.  Still, I'm not getting my hopes up too high.  It's VERY RARE to clear this without treatment.  

Now, back to your original question.  Here are the supplements I I've been taking daily for the past three months:

"Healthy Liver" (from Vitacost.com) - 6 capsules
Vitamin E (natural, not synthetic), - 800 I.U.
Ester-C - 2,000 mg.
Centrum Silver - 1 tablet
Sam-e - 400 mg.

BTW, the ingredients for "Healthy Liver" are listed on the Vitacost.com website.  It contains Milk Thistle, selenium, alpha lipoic acid, etc. I used to take each of these things separately, which was really inconvenient (not enough room in my medicine cabinet!) and much more expensive.

Susan

[mikesimon]

I was cirrhotic by the time I was diagnosed. My first clue was esophageal bleeding so I was pretty far along. I drank prior to my diagnosis and that no doubt accelerated my liver deterioration. I never drank after my first bleed. I didn't start the supplements until diagnosed so, like I said, I was pretty far along. Mike