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

[fresnoborn]

SORRY, THAT THREAD ABOUT SMOKING IS "SMOKING AND FIBROSIS"

[fresnoborn]

YOU'RE RIGHT! IT IS YOUR CHOICE, YOUR DISEASE BUT....YOU ARE NOT ALONE. AS FAR AS WHAT PEOPLE WILL SAY...WELL YOU'LL GET LOTS OF COMMENTS ON THAT HERE ON THIS FORUM. MY DECISION WAS BASED ON THIS "OH, ELIZABETH YOU'VE LOST SOO MUCH WEIGHT, YOU HAVE BAGS UNDER YOUR EYES, YOU LOOK TIRED, WHAT'S WRONG ARE YOU SICK?" "AS A MATTER OF FACT, "YES I AM. AND HOW ARE YOU?" "OH, I'M FINE. WHAT'S WRONG WITH YOU?" "I'M ON CHEMO RIGHT NOW" "WHY?" UH-UM-WHAT DO I SAY? WHAT WILL THEY THINK. YES, THEY DO JUDGE YOU WHEN THEY FIND OUT YOU HAVE HEP C (THAT DRUG DISEASE) SO THEN I JUST SAY, TO AVOID ALL THAT "I HAVE A BLOOD DISORDER" AND LEAVE IT AT THAT. IT'S NOBODYS BUSINESS. IT COULD BE LUPUS, LEUKEMIA, LOT'S OF STUFF. EVERYBODY HAS THEIR WAY OF DEALING WITH "OTHERS". THIS IS MY WAY. I LIVE IN A SMALL COUNTRY TOWN WHERE EVERYBODY KNOWS EVERYBODYS BUSINESS. SO THIS WORKS FOR ME RIGHT NOW.    ELIZABETH

[dammitjanet]

I've been thinking of similar responses.  Something like "I have a viral liver disease" to explain why I'm not drinking.  I had been a "heavy social drinker", so I'm really amazed at the relatively minor amount of liver damage  found on bx.  You're right, most people are uneducated and will believe what they want.

[cuteus]

while you are considering options, do not think of hcv as only affecting the liver, it is a slow moving condition in that organ in most people, though not all, but is not for livers only, consider these:
http://www.hepnet.com/boca/scully1.html

[dammitjanet]

Keep in touch & let us know what you decide re tx.  I also have underlying conditions that concern me, primarily cardiac history.  Heart attack (proabably spring 2000 - didn't know what it was at the time), cardiac cath & 2 stents in Nov 02.  My husband also travels extensively, and I spend a lot of time home alone.  A blessing, I think :)!

[v eggie dip]

it surprises me that with your cardiac history they would even consider treatment...my family physician told me that my PVC's may prevent treatment, depending on what the EKG shows at pre treatment check-up...But, I live in Ontario and I don't trust the health care system here (as most of you have heard me say  hehe)....

[dammitjanet]

Thanks for the heads up.  I had read previously about cryoglobulinemia, and had some concerns since I am Rh+. Must remember to share that info with the GI.  So many things to consider.

[scruffy]

Thankyou. It is very easy to develop a kind of tunnel vision focusing only on the liver. You are always here to remind us of the other factors that are also important to consider. The treatment decision is best made viewing as much info as possible.

[dammitjanet]

I also thought cardiac history might be a factor, but GI doesn't seem concerned.  My last stress test in April showed no additional heart damage, but I'm fairly certain that the GI doesn't even know that.  Beth - Just read the smoking thread & your posts about neck pain.  I also suffered from severe neck pain for almost two years before I quit working.  Went thru x-rays, mri's, chiropractors - doctors couldn't find anything and basically told me "live with it".  I also developed a heavy Advil addiction that probably led to some of the liver damage I now have.  Anyway, after I quit working and started going to the gym regularly, the pain went away.  I think it was mostly stress, and being hunched over a computer all day.  Even moderate exercise really does help reduce stress.  I only walk on the treadmill at 3.5mph (too scared to run), and I still get the "runner's high".  I would never have believed I could do it, but it has worked for me.  I also found Pilates helpful in strengthening my back and neck muscles.  Start slow & work up.  Also, anything you can do to reduce stress in your life will be helpful.  
DJ

[MichaelT]

I'm sorry, but acupuncture is demonstrably no more effective than randomly poking yourself with a pin.

There are general predictors of who will and won't progress rapidly, but they are far from absolute.

The best advise I know to give is do not smoke, do not do cocaine, don't consume alcohol, have a good diet, exercise regularly. It might be a good idea to get evaluated for any vitamin/mineral deficiency and supplement if needed.

Knowing you have this liver disease, monitoring will be necessary. Some people have this disease and live very long lives without treatment.

-Michael

[v eggie dip]

Hi DJ I'm Beth, welcome...

I have had some experience with accupuncture, although not liver related...

Last winter my right forearm just ached and had shooting pains like crazy so I went to a physio therapist...He determined it was tendonitis (tennis elbow) and suggeted the best therapy would be acupunture...after 5 months of this 3 times per week my arm did not improve so I quit it...I am now thinking, since I was diagnosed with this virus, could it be the virus attacking the muscles?...At any rate I wish you well and hope you get some input on accupuncture and the liver...oh and by the way..I have been on a vitamin regimen for 3 months and my arm has improved quite a bit *smile*

Beth

[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

[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

[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

[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