Accupuncture?

[dammitjanet]

Hi everyone.  I've been "stalking" ya'll for a month or so, and you're great.  You've given me both hope and trepidation regarding treatment.  I am (almost) 55 y/o WF diagnosed 6/05. Geno 1b, VL 1,590,000. Bx grade 3, stage 1.  GI wants to start tx in January.  I am dreading it.  Currently asymptomatic, feel great, except for periods of anxiety/depression.  Hard to imagine putting myself thru a year of hell to achieve "improved quality of life", which is just fine right now, thank you very much!  Just wondering, since liver damage is minimal, could accupuncture help control the inflammation, thereby slowing progression of fibrosis?  And indefinitely postponing conventional treatment?  I truly hate needles and prefer to think of accupuncture as "pins".  Anybody have any knowledge or experience with accupuncture?  I would appreciate you input.  Thanks for your time.
DJ

[audreywald]

Thanks for the kind words.  I do not think I deserve this illness or its complications. It's just what happened, you know? I never forget that for some of my friends it was/is HIV, and I am grateful this is not me. BUT, my legs cramp so much, I am so tired so much, I can't go to the bathroom normally anymore, or clean or shop, or any of the things that were so normal.  Is it the hep? Do I have fibromyalga? Or am I just a middle aged baby who is making all this up in her head? (thats my mothers voice, not mine)

I don't know where to begin. but if my insurance will help, I am going to try accupuncture, physical therapy, everything just to see if I can IMPROVE my quality of life because its really gone downhill these last few years. I don't know why. I don't even care why, other than knowing what I am up against. I just want some sort of life back, some sort of hope again.

[cuteus]

I hope some of those things work for you. A few of the symptoms I had prior to tx, IBS being one of them plus the aches and fatigue. I do think some very sensitive bodies react to this chronic infection with some severity. Now that I am post tx, my IBS is not as bad, and my nails are growing after years of not doing so. Little stuff that we did not think was HCV related.
Keep in touch as to what improved your health, I can use the joint ache relief still. Tallblonde was using a little formula that got hers and the neuropathy under some control.
best to you

PS we have not heard from Cindee in ages!

[audreywald]

My experience with tx will remain with me for the rest of my life.  - everytime I have to take a pill and drink a powder at night so that I will be able to "eliminate" the next day. I functioned perfectly normally in this respect until 13 weeks of tx. Now this little routine is a part of me like brushing my teeth - I have no choice. Sometimes it hits harder than others and I have to be VERY near a bathroom always. On Vacation it was kind of close a couple of times.  So What I am saying is it made me worse. It gave me problems I did not have before and it did nothing to cure my hep, Now it looks like I might have fibromyalgia. The tests and docs will start again soon. Thye say hep itself can cause this.

It's a risk either way. My quaility of life is verty altered - is it the hep, the meds ??? Who knows?

i took a lot of chances 25 years ago and now I am paying the piper.

[Forseegood]

Just wanted to chime in how sorry I am that you are having these bad experiences post treatment, it seems that the treatment can indeed be kinder to some than others. You didn't mention how long it had been since your treatment, I know a guy who had to wait 3 years for many of his bad side effects to resolve, maybe this will happen for you in time, fingers crossed for you.

One thing, please don't "blame" yourself for past sillyness in ending up with this disease. (Pay the piper.)We have enough to condend with with this dang disease, something we never had any idea about.

I did briefly after I was first diagnosed, and I've found that is it just counter-productive, there are enough people "out there" blaming us. I really consider myself a kid at 22, so desperate to "belong", that type of thing. I gotta be kind to that girl, because she was me at one point. Sorry if I am being too emotional today, hope you feel better soon!

[jmjm530]

Cougareyes makes some good points on your options.

As a geno 1, stage 1 with minimal liver damage, some  doctors would recommend treatment (tx) in your case, but many would tell you to watch and wait.

Bottom line, it's your decision, not anyone else's including the doctors. So the best thing is to do your research, ask the questions and TAKE YOUR TIME. It's a big decision so don't put yourself under pressure, you have plenty of time. As MichaelT said, many never treat and lead long, full, healthy and productive lives.

You do make a good point about your age and health. It's always good to do treatment when you're healthy. On the other hand, newer, better treatments should be out of trials in the next three to five years. The expectation is they will have higher cure rates with fewer side effects.

Personally, I never would have treated with the current drugs if I was a stage 1. I believe that even more so after 26 weeks of treatment. It can be a rough ride with unknown side effects, and no one can tell you if some of the sides will be permanent or not.

As far as "alternate" approaches, my only advice is not to go overboard with anything, be it herbal formulations, nutritional supplements, etc.  Not sure how long you've had the virus, but grom the way you describe yourself, it seems you've done pretty well with your current regimen. As far as acupunture, it won't bring down your viral level but may help your immune system in general. Certainly, I don't see a downside.

-- Jim

[go-girl]

"hepnet.com" is Dr, F. Anderson (Vancouver B.C.) who is leading the study that I am thinking of going into and got accepted for, providing its one where you get proper dosage to beat this virus. My friend had a heart attack Nov/04 has Genotype 1 and has been on tx for the 24wk will be finished Oct/05 next month,she has been fine on it, weepy, tired etc; she will find out soon what her results are. I never had a problem with liver biopsy, didn't take anything for it before or after, layed in recovery on my right side for a couple of hours and went home, o complications, I havea high tollerance for pain I was more anxious than anything, if felt like a little kick in my side, that was it.

[jmjm530]

Speaking of inflammation --

LONDON (Reuters) - Scientists have just found out what gourmets have always known -- that there is something special about fresh extra-virgin olive oil.

A tasting experience at a molecular gastronomy meeting in Sicily led University of Pennsylvania biologist Gary Beauchamp to analyze freshly pressed extra-virgin olive oil, in which he found a chemical that acted like ibuprofen.

He and his team named their discovery oleocanthal and found that, although it has a different chemistry, its effect is similar to that of the non-steroidal anti-inflammatory compound in the commercial pain-killer, they wrote in the science journal Nature.

The discovery is significant because scientists believe to an increasing extent that inflammation plays an important part in a variety of chronic diseases like stroke, heart disease, and breast and lung cancer.

"Our findings raise the possibility that long-term consumption of oleocanthal may help to protect against some diseases," they wrote.

It may also go some way to explaining the health benefits long attributed to the olive-oil rich Mediterranean diet.

[jmjm530]

dammitjanet said previously: "I know that accupuncture will not kill the virus, but I might still consider it prior to or as an adjunct to tx, as I know it to be beneficial in stress relief and smoking cessation."

----------------

I agree. And who can say for sure your theory about liver inflammation is wrong ?

Just be very careful about the herbal formulas that often go with acupuncture therapy. The wrong formulation can be quite counterproductive.


-- Jim

[Forseegood]

I did acupuncture for about 6 months and it was great for relaxing and seemed to give me more energy and help with little aches and pains, but one day when I got off the table I felt almost faint. Took my bp and it was really low. Turns out accupuncture lowers blood pressure in some people and I have low blood pressure to begin with. So take heed on the bp issue, that made me stop doing it.

[cquest]

http://www.liverfoundation.org/db/articles/1022

Check out the above link re nutrition and the liver. It mentions the water soluable vitamins A,D,E & K that pass through the liver, fats, proteins, etc. I thought it was very informative.

Accupuncture was brought up to me by my sister in law who knows everything....I debunked her suggestion and she called me a 'know it all Aquarius' and accused me of 'not trusting her'. It's all I can do to keep from screaming at some people that make suggestions on how to treat or get rid of this thing!
Cin

[cuteus]

that study was in a thread, and probably still in archive here. That was the consensus exactly, the folks in the study had severe conditions already, and that might have influenced the results. It needs to be replicated for it to be valid.

[dammitjanet]

Thanks for your kind words & encouragement.  Just to clarify, the fibrosis is only stage 1.  The inflammation is grade 3.  I understand that the inflammation leads to fibrosis.  That is why I thought the acupuncture might help the inflammation,as it has been proven successful in other inflammatory diseases.  Many years ago I worked for an anesthesiologist who also did acupuncture, which was very successful in many patients.  If he were still alive, I would consult him now.  I know that accupuncture will not kill the virus, but I might still consider it prior to or as an adjunct to tx, as I know it to be beneficial in stress relief and smoking cessation.  Good luck with your treatments, as well.  I imagine that I will be joining you soon.  DJ

[dammitjanet]

Thanks all.  Michael - I have done the things you advise - well, working on the smoking thing.  Generally lead an active, healthy lifestyle.  Beth - sorry acupuncture wasn't successful for you.  I do take some supplements and I believe they help to improve my general physical condition.  Guess I'm just grasping at straws.  I guess my age is a big factor for me.  Can I survive in good condition for another 20-30 yrs?  If I postpone tx not sure I could tolerate it any better at 60 or beyond.  Thanks again.

[v eggie dip]

the age factor is a biggie for me as well...I am a 54 year old female and I am still on the fence regarding treat vs don't treat...I haven't had a biopsy yet so I guess that will play a big role in the decision...I have some pre existing conditions that cause me grief and I am concerned if I wait for something more freindly in the terms of treatment to come along my other health issues will worsen and maybe not allow treatment later on in life...I think my biggest fear is the unknown...I have been coming to this forum since May and have heard some pretty scary things about the side effects...I spend a lot of my time alone, my husband is a homicide case manager and he travels 90 % of the time so I would pretty much go it alone...

keep in touch....Beth

[fresnoborn]

HI JANET. WELCOME TO OUR GROUP! I, TOO, HAVE HEP C AND AND HAVE ALSO SUFFERED FROM MUSCLE ACHES, PAINS IN MY LEGS AND ARMS AND INFLAMMATION OF THE LIVER AS WELL. I TRIED ACCUPUNCTURE, TWICE, FOR ABOUT A YEAR TOTAL. IT DID NOT HELP MY INFLAMMATION, MUSCLE ACHES OR ANYTHING ELSE. I SPENT ALOT OF MONEY WITH NO RESULTS. I ALSO TRIED SACRAL CRANIAL WORK, CHIROPRACTORS (3 OF THEM), PHYSICAL THERAPY AND SOME COUNSELING (THAT HELPED, SOME). AFTER ALL ATTEMPTS FAILED, I DECIDED TO GO ON TREATMENT. I WAS TERRIFIED BECAUSE ALL OF THE HORROR STORIES I BEFORE HEARD ABOUT THE TREATMENT. THE NIGHT OF MY FIRST INJECTION, I WAS SCARED TO DEATH, I CRIED AS I TOOK MY FIRST INJECTION. THEN I SAT AND WAITED FOR ALL THESE HORRIBLE SIDE EFFECTS TO HAPPEN. I FINALLY WENT TO BED AND HAD SOME RESTLESSNESS IN THE NIGHT DURING MY SLEEP. I WOKE UP IN THE MORNING A LITTLE IRRITATED BUT DOING OKAY.  NOW I AM FINE. IT TAKES A LITTLE BIT FOR THE BODY TO ACCEPT THE TREATMENT BUT IF YOU START TREATMENT I THINK YOU WILL BE FINE. I AM NOW ON WEEK 10 OF MY TREATMENT AND STILL FEELING OKAY. IT'S NO PICNIC, ESPECIALLY IF YOU HAVE A LOW TOLERANCE FOR PAIN LIKE ME, BUT I FEEL YOU WILL DO FINE ON TREATMENT. SO FAR, MY HAIR IS NOT FALLING OUT, I AM NOT SUICIDAL AND I LIVE A FAIRLY ACTIVE LIFE. I REFUSE TO LET THIS STOP ME FROM LIVING. THE SOONER YOU START TREATMENT, THE SOONER YOUR VIRAL LOAD WILL COME DOWN, AND THE SOONER THE INFLAMMATION COMES DOWN, THE SOONER YOUR LIVER WILL GET SOME REST. THIS DISEASE DESTROYS THE LIVER AND YOU CAN'T LIVE WITHOUT A LIVER. AS FAR AS THE SMOKING GOES....WELL I TOO SMOKE AND IT'S NOT GOOD FOR YOUR LIVER. SMOKING PROGRESSES FIBROSIS. READ THE THREAD ON THIS SAME FORUM TITLED "SMOKING AND HEP C. YOU MAKE YOUR OWN CHOICES THAT ARE RIGHT FOR YOU, MY CHOICE WAS TO GO ON TO TREATMENT. IT'S ONLY FOR ABOUT A YEAR AND IT MAY GO FAST FOR YOU. KEEP US POSTED AND GOOD LUCK TO YOU.   ELIZABETH

P.S. I AM GENOTYPE 1B, FIBROSIS STAGE 2/GRADE 2 VIRAL LOAD COUNT 10 WEEKS AGO, BEFORE TREATMENT WAS 500,000

[dammitjanet]

Thanks Elizabeth.  Sounds like we have a lot in common.  I probably will do treatment - one day I'm pro, the next day I'm anti.  I'm actually very lucky in that I have good health insurance and don't have to work (retired at 50).  My life would probably seem very trivial to those having to cope with tx while working, supporting a family & raising children.  But, it is my life and I've worked hard to earn it.  (as you can see, I'm still going thru anger & denial!)  I'm also concerned about reactions of friends & associates.  I don't want to be anybody's pity project!  It feels so good to finally talk about this!  My husband is wonderful, but this is my disease, not his (he tested negative, tg) and is even more anti-medical establishment than I am.

[LvdByGod]

just a quick note, i didn't have time to read the others posts, but you're not really doing tx for "improved quality of life", but to kill a virus that could potentially kill you.

remember, that your trying to stop a disease that can eventually ruin your quality of life, and end up killing you in the end. it's kinda like treating cancer with chemotheropy, no one does it to improve thier quality of life, only cause our chances of the virus ruining our life is there.

(at the same time i can surely appreciate your concerns of tx)

i hope you can feel better about treating at least knowing that you're doing your best to get rid of this thing. and i will pray you will do just that! try to get that "dragon killer" attitude to focus on your upcoming tx.

my girlfriend loves her accupunture sessions but it can't get rid of the virus or fibrosis. stage 3 is serious and leads to 4, which is cirrhosis. you have this time to try to prevent even having to go there, which is when quality of life will be heading down and possibility of liver cancer or liver failure getting greater!

being a stage 3 you really don't know how close to a stage 4 you really are...so in my opinion go for it and stomp it out! i've been on treatment for 2 years straight (i had problems getting clear) and am still standing!...looking forward to ending treatment soon though and prayerfully staying clear!

sandi

[cougareyes]

You do have options. At 55 y/o w/ stage 1 and having a good quality of life; I would not do tx. I'm 44 at stage 3 and had a declining quality of life and decided to treat.Tx is no picnic; I guess you just have to pick your poison. Has or will the effects of hep c do more damage to your body than the effects of the combo therapy. You do have time to explore other options; the main thing is living a healthy, liver friendly lifestyle. Diet, supplements, etc. whatever you try the main thing is to try and get the inflammation down.  Good Luck in your decision

[SnoWav]

I have had C for 30 some yrs 52yrs old 1a mild fibrosis felt ok so had decided you got to die from something so why do TX. The last few yrs my arthritis and different strange pains as well as left arm pain and numbness had gotten pretty bad.My wife went thru TX last yr and cleared so that meant condoms for me.I know it was a selfish reason for me to start TX but it has been best.All my aches pains and numbness has went away.Sure I feel the flu like stuff and a little whacked in the head but I can see that the hep was slowly starting to kick my a$$.Still working 40 hrs a week,30 weeks on the TX trail.jeff

[v eggie dip]

thanks for sharing with me, it's nice to know people our age are treating and able to stick with it...

Beth

[chellski]

beth, i've been feeling run down but my bloodwork is fine - but i see you mentioned you're on a vitamin "regimen" ....what is it?  i never took vitamins and am wondering if they'll help me feel any better....i was hospitalized because of a bad allergic reaction to an antibiotic called levequin  -  horrible experience and maybe has just left me a little wiped out.  i'm feeling better every day, but still would like to look into vitamins...
thanks
<3 michelle

[v eggie dip]

an allergic reaction can be serious, glad to hear you are better....

I take:

milk thistle 1000
vit E 400
selenium 200
vit C 500
garlic
vit b complex
sam-E

and I would like to start taking Nu-Liver but they won't ship to Canada

I showed my Doctor the list I take and he said they are all okay but he said to quit the vit E cause it got some bad press but I still take it...

like I said earlier it helps my muscle pain quite a bit...I am not on treatment yet and don't know if the Doctor will let me continue taking all this if and when I do start treatment but I sure hope so....

Beth

[Laika]

My dr specifically told me to take vit E during treatment.  I didn't take his advice on that, have no idea if it would have been helpful or not.  But I do believe he is knowledgeable, specializes in hep C, stays up on all the latest stuff.  So it's interesting, the differences of opinion.

Laika

[v eggie dip]

yes it is very interesting to hear the differences of medical advice...the reason he told me to stop taking it was because there was some study done that showed a large percentage of the people involved had heart troubles, not sure to what severity but maybe they had pre exisisting heart conditions prior to the study, but at any rate I still take it and and I am convinced it helps.....of course I am grasping at straws for alternatives to treatment so it could all be in my head lol