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Precious27134
New Member


Date Joined Aug 2006
Total Posts : 1
   Posted 8/18/2006 11:54 AM (GMT -7)   
Hello,
 
I'm new here, but not to hep c.  I've had it about 22 years.  I have no idea how I got it, and didn't know it was hep c until 7 years later.  I was first diagnosed in 1984 with hepatitis b when I had what seemed to be a terrible flu that I could not shake.  At that time, the doctors didn't know much and I was quarantined in my home for 6 months, and the doctor said all my dishes and silverware had to be boiled/sanitized every day after I ate.  I was 21 at the time and stayed with my parents during that time.  They all had to get the hepatitis b vaccine so they wouldn't get sick.  After I was over the acute stage, the doctor said I was fine.  It wasn't until 7 years later that a doctor I went to wanted to take a liver biopsy which then showed I had hepatitis c.  I didn't have any liver damage at that time, and the doctor said there was a treatment that was experimental and very expensive, and he said I didn't need it.  Nine years later, I had another biopsy.  That same doctor was sure there wouldn't be any damage since there wasn't 9 years earlier, and my viral load was very low.  To this doctor's surprise, there was mild liver damage, but he still said I didn't need treatment unless I really wanted to do it, but it would make me very sick, so I didn't do it.  From then on, my liver enzymes were monitored and they hovered around the same between the years 2000 to 2004.  (AST 95-149) (ALT 92-123).  I had a new doctor then and she wanted me to get the treatment, and she sent me to different specialists.  I was stubborn and didn't want to do the treatment.  I don't believe in putting drugs into my body.  I wanted to do it naturally.  In 2004 I got very sick with what they said was colitis and had to be hospitalized.  My AST was 181, and ALT 196 then.  My platelet count was 80,000 after I got out of the hospital.  It had been dropping before that because it was 136,000 in 2000, and 124,000 in 2001.  One of the specialists I saw didn't think it would be a good idea for me to do treatment because of the low platelet count and my history with depression.  By the way, I applied for disability in 2000, but didn't get it, applied again in 2001, and then got it.  Anyway, what I'm leading up to is this...I met a lady who told me about the natural treatment she tried and it really helped her, so I gave it a try.  It isn't covered by insurance so I have to pay for it out of my own pocket.  It costs about $50 a bottle.  It is a blend of mushrooms.  It is called AHCC which strengthens the immune system so your body can produce more interferon and fight the virus on its own.  I've been taking it since February 2005.  In the first 3 months it lowered my viral load from 157,000 to 7,600.  Then three months later, it went back up to 54,900.  Last month, almost a year later, I had another test, and my viral load is now 1500.  My doctor is very impressed, and she says to keep doing what I'm doing.  I do have cirrhosis now, but don't know to what extent, but I've been having problems with swollen ankles and belly in the last few months.  I haven't had a copy of my medical records in years, so am getting copies now so I can see everything for myself, especially my latest liver biopsy I had in 2004.  The doctor that did that didn't tell me how anything came out except to say I needed treatment.  I had ultrasounds, and MRI's too.  I've been looking on the internet and haven't found anyone else who has been taking AHCC.  I would like to compare notes. 
 
I've rambled on long enough.  Thanks for listening everybody.
Take care.
     

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 8/18/2006 3:11 PM (GMT -7)   
Hi and welcome! I have never heard of AHCC. There is at least one person here taking Chinese herbal medicine with good results. Lots of people take milk thistle. I tried it, but it didn't have any positive results for me. It's a good idea for you to get copies of your records. If the AHCC is helping and not hurting, then I'd go ahead and continue with it. This is only my personal, nonprofessional opinion.

Connie

Marg57
Regular Member


Date Joined Dec 2005
Total Posts : 446
   Posted 8/21/2006 5:10 AM (GMT -7)   
Hello Precious,

I have been taking Chinese herbs (salvia, peony and magnolia) and having weekly acupuncture. Since beginning this alterative treatment my Prednisone dose has been decreased from 15mg to 12.5 and my liver enzymes have improved to the best they have been since diagnosis and liver failure in 2004. My heptologist said the same. "Keep doing what you're doing - we Western doctors don't know everything" the acupuncture will hopefully retrain my white blood cells not to attack my liver - I have autoimmune hepatitis - where one's own body , for some unknown reason, attacks itself - in my case - the liver was attacked causing cirrhosis.

Can't comment on AHCC but if it works why not keep it up - you can't really put a price on good health - especially when you've experienced the reverse.

Take care.
Marg
 


wheredidigo
Veteran Member


Date Joined Mar 2006
Total Posts : 605
   Posted 8/25/2006 8:05 AM (GMT -7)   
hi precious,and welcome to HW,thanks for the info,,,,,my hubby may need to seek alternative treatment for chronic hep b,,,keep us updated when ya can :)
trish
 
 
Life should NOT be a journey to the grave with the intention of arriving safely in an attractive and well preserved body,but rather to skid in sideways,chocolate in one hand,wine in the other,body used up ,totally worn out and screaming"WOOOOHOO WHAT A RIDE!!!" 


Heppy
New Member


Date Joined Aug 2006
Total Posts : 15
   Posted 8/27/2006 7:42 PM (GMT -7)   
Hi Precious,

I was diagnosed in 1999 because I had three teens who could not go to school without Hep B vaccinations. I had always had a CLEAN blood test and thought nothing of this Hepatitis thing they were talking about. I receieved a phone call from the nurse who said what I was used to hearing. "Your blood work is fine."
Not even a sigh of relief because it's what I expected. One minute later, the phone rings again. THis time it's my doctor. He said the nurse made a mistake by pulling the wrong bloodwork. He broke the news to me. My blood was infected with Hep B and Hep C. He said Hep B was curable but he apologized for the Hep C, telling me that there was no cure.

I felt only one thing. SCARED! Not because my bloodwork was tainted, or because I had Hep B and C, because I didn't know what it was. I was afraid of the NO CURE. What did it mean? How long did I have to live? What happens next? My doctor wanted me to have a biopsy done, and I said NO. He explained how the big long needle would go through my stomach and into my liver taking a small portion of it for examination. At that point, I knew biopsy was not for me. He wasn't a specialist either. I moved to another town and got another doctor.

My first viral load was 33,000. He suggested interferon without a biopsy, a blood test to find out what genotype I had. I said NO. That was in 2001. I have regular blood work done so that I know what my viral loads are. After I found out about my viral load, I had a friend who knew a little about herbs. I also did some research on the internet. I took MILK THISTLE and my viral load dropped to 20.000. Got involved in a relationship with a lot of stress and took the test, and the viral load was 78.000. I got rid of the relationship, continued my MILK THISTLE and my next test showed 6,490. I was shocked. I asked the nurse if she made a mistake. Clearly, it was no mistake. That was in June 2005. In August 2005, I had to put three of my cats to sleep. They were old. I was completely lost without my pets. Two weeks later, I received a phone call that a good friend of mine died. I had to attend a funeral. Very stressful. In September 2005, I received a phone call that I thought was a prank call.

Unfortunately, it was not. My youngest daughter of 19, was in a car accident and broke her back, arm, ruptured her intestines, shattered her cheek bone, which set her eye back, and her neck was sprained. I had no way to get to Fresno. I live in Stockton, CA. I called everyone and got a ride. I was stranded in that town for nine days making sure my daughter got proper treatment, which she did not. I stayed at the hospital throughout her surgeries and she came home with me. She is great and can walk and function normally. The driver was killed, the passenger in the back seat is paralyzed from the waist down.

Completely stressful! I was happy to say good bye to that year and start a new year with good things to come. In November of 2005, I received a phone call from my son in Oakland. He was in the hospital and they didn't know what was wrong with him. My daughter was still using a back brace and cane, and my oldest daughter suffers from Rheumatoid Arthritis and has use of one leg. Moving along, we all went to the hospital and my son was covered with rash from head to toe. He is gay. I knew this but hoped for the best.

We had to wear gloves in his room. He was achy all over, and I massaged him. I had to get back home because I don't drive and our driver had to get her grandmother's car back. Everything seems to be fine and I am relieved that I was able to make it to Oakland to see my son. In January 2006, I received a phone call from my son telling me that he had HIV/AIDS. I cried. I was scared to get my last blood test because of all the stress I had gone through and was still going through. Like I thought, my viral load was 100.000. That is the highest its ever been.

I went to Barnes and Noble and bought some books on Hep C and walked around like a zombie. I finally went home and started reading the books. Bringing this long story to a close, I do believe that STRESS can not only kill a healthy person, but completely wipe out someone with Hep C. I am now wondering if the MILK THISTLE is really working for me, or was it the low stress level I had before all these horrible events took place. Any comments are appreciated. I don't talk to people or socialize much. I go to college and take care of my older daughters because they can't.

Thank you for listening.

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 8/27/2006 9:08 PM (GMT -7)   
My goodness, Heppy, what a lot you have been through over the past 6 or 7 years!! Thank heavens your daughter survived the accident. One of my best friends lost her daughter in a car accident recently--and that was the only family she had. So sad.

Welcome to the forum. You will find a lot of support here! I find the correlation between stress and your viral load very interesting. I have never known what my viral load is. When I was getting treatment, it was interferon only. They did a biopsy and proceeded with treatment, which it turned out I couldn't continue, due to very low white counts. Aside from fatigue, and unrelated hip problems, I felt okay for about 12 years. Then, during a routine abdominal ultrasound in April '05, I was found to have a huge liver tumor which proved to be cancerous. That is what I'm dealing with now.

I did take milk thistle when I was first diagnosed, back in '93. I only took it for a month, but it wasn't making a difference in my liver panel and, frankly, was giving me a very sore butt. I personally know of one person who took milk thistle and her hep C became undetectable. In '99, they didn't have the combo treatment that they now have. I believe they will still say "in remission" rather than "cured." I have read on message boards of others taking milk thistle or herbs who are having great results.

For myself, I find I must keep my life and environment as stress-free as possible. I try to avoid people and situations that cause me undue stress. There are things in life that are unavoidable, but I try to "go with the flow" as much as possible. I choose my battles carefully and try to let go of the small things. My coping mechanisms are limited, due to my hip problems. However, I do some positive readings in the morning and also do some meditations, listen to soothing music, call supportive friends when things are really bad. Spending time with my 2 cats is also very soothing. They love to be petted and stroked and their purring calms me right down!

From what you wrote, I get the impression that you have never had a liver biopsy. That is really the only way to know how much damage there is to your liver; if you have cirrhosis; if the hep C is chronic active and still attacking your liver. Some people test positive for hep C, but if it is not active they do not need treatment. If you were exposed to hep B, your immune system could knock it out. However, you will have the antibody for B and thus never get it again nor can you pass it on. This is my situation with B.

I'm sure others will post further info, their experiences, etc. I'm glad you found us and I hope you will keep us apprised of your liver situation.

Connie

Heppy
New Member


Date Joined Aug 2006
Total Posts : 15
   Posted 8/27/2006 11:54 PM (GMT -7)   
Hi Connie,

Thank you so much for the warm welcome. I am so sad about your friend losing her daughter. I am sad for her. It is surprising that you have never found out what your viral load. It tells you how much virus is in your bloodstream. It is to my understanding that milk thistle is not effective if you have liver cancer. Please do not quote me, it is something that I read in one of my Hep C books. What will they do about your tumor? Can they remove it? I am not too knowledgeable about Hep C or any liver disease. Any question that I ask, I ask because I want everyone to be cured of whatever it is that they have. I mean no offense. I know that it is quite personal and after reading your post, I put myself in your shoes and felt so much fear. You are a strong person, and I appreciate you sharing your story with me.

I have not had a liver biopsy but I am going to a liver specialist for the first time. I can't really explain how terrified I am about hearing more bad news. Death for me is not good. I am not prepared to die and even though my kids are grown up, they are far from being ready to be without me. I am more concerned about their well-being if I were to pass on. I know this is stress in itself and I am trying very hard not to worry about all of it, but it's hard. I am also epileptic, so I don't know if interferon is for me. I read a lot about it and found out that it can cause seizures. I am more worried about how long it took me to realize that I needed to have a specialist in 1999.

I hope that you get well Connie, and I hope you will have some answers to my questions about your situation. I know this is not just about me. Thank you again for responding and sharing your experiences with me. Even as I type this in closing, I am terrified.

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 8/28/2006 7:52 PM (GMT -7)   
Heppy, I don't know if you believe in God or a Higher Power, but if you do you can find calmness and strength by turning your worries over. I do that on a regular basis. There are things we can do for our health, but other things really are out of our hands. I'm glad to hear you are going to a liver specialist. I hope you feel comfortable with him and confident in his knowledge.

As far as my tumor, when it was diagnosed it was inoperable--too large. Also, it had metastasized to the inferior vena cava (an artery.) I had one chemoembolization--arteries cut off with coils and chemo inserted via the femoral artery into the hepatic artery, which was feeding the tumor. Three months later, I had a new treatment, TheraSphere, in which microscopic glass beads containing a certain type of radiation were inserted into the tumor via the hepatic artery. Most of the tumor has died, including the part that had spread to the IVC. Now I am going through the pretesting prior to having the entire right lobe of my liver removed (it will grow back.) Sometime after that, I will have to go through treatment for the hep C--or risk having the tumor come back. Untreated hep C does have consequences, though they may take years to surface. Primarily, it puts one at risk for liver cancer and/or cirrhosis, as well as liver failure. It's not the hep C, per se, that can kill you...it's the damage it does to the liver.

I don't mind answering any questions you have, if I am able to. So fire away!

I am concerned about your level of anxiety and hope you will share that with your liver specialist.

Hugs,
Connie

Post Edited (hep93) : 8/29/2006 3:24:57 PM (GMT-6)


Heppy
New Member


Date Joined Aug 2006
Total Posts : 15
   Posted 8/29/2006 4:45 AM (GMT -7)   
Wow Connie!

I do believe in Jesus Christ as my lord and savior. I talk to him often about my situation. I find relief when I remember not to focus on my ailments and unfortunate events in my life. I don't understand all of the terminology that you used as far as your tumor. I think I understand that your tumor was massive and in dangerous areas of your body, thus (inoperable). Is this correct? I am very happy for you that the tumor has reduced greatly, but what are the risks now? Did your treatment make you feel really sick? I'm sorry for all of the questions but I really know nothing about any treatments for tumors or Hep C.

I do hope and pray that you will get well Connie. Although my level of anxiety is very high, most of it is because doctors today are very insensitive. I find that to be the reason for me not trusting a doctor enough to go poking around my liver. I just don't think doctors today care as much as they used to. That is very scary for anyone who is ill, and like me once, has blind faith in them. I will be very open about how I feel with my liver specialist and I hope he/she turns out to be a good doctor.

Hugs back,
Heppy

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 8/29/2006 2:40 PM (GMT -7)   
Heppy, yes, the tumor in my liver was very large...6 in. at its greatest length. It also had spread to an artery. Now most all of the cancer is dead, except for a bit of the primary tumor. The only real cure is surgery, and I am at a point now where the right lobe of the liver can be removed. The left lobe will do the work while the right lobe is growing back.

The first treatment I had made me hurt a lot in my liver. The doctor said it was the cancerous tissue being killed that was causing the pain. I also slept about 23 hours a day for 2 weeks, and had no appetite. The 2nd, different treatment I had killed most of the remaining tumor, although there are still some cancerous cells left in the tumor. They will be eliminated with the liver resection. I had very few side effects from the 2nd type of treatment--mostly fatigue and lack of appetite.

I don't believe in having blind faith in a doctor or any medical professional. I think it is very important to know what you are taking and what it is for, as well as how much you are taking. I think it's essential to find out everything you can regarding your case.

Hugs,
Connie

wheredidigo
Veteran Member


Date Joined Mar 2006
Total Posts : 605
   Posted 8/29/2006 4:05 PM (GMT -7)   
hello heppy:)
I am so sorry about all your health problems,and those of your family. One thing I noticed,you said your body kicked the hep b? Acute hep b is curable,,,if your own body kicks it out in 6 mths or less,but chronic hep b is NOT curable,,,though can be put into remission..some types of hep c are curable too,which is why you definately need to see a hepatologist. I am a caregiver to my husband,Rick,who has chronic hep b and was on interferon for 7 1/2 mths but has stopped temporarily due to triple bypass surgery. We are also in the middle of changing liver specialist as the one hes had does NOT keep as good an eye on him as we feel he shouldve. I know how scared you are of these treatments,as I have personally witnessed it for the last year with my husband,,,but you can get through this,you will find the strength,for yourself,and for your children. When are you to see your liver specialist? Its a good idea to write down all your questions,so that when you leave the drs ,you feel somewhat empowered by knowledge and if you dont get the answers you want,ask again,,,and if you dont feel comfortable with any dr,,,find another one...good luck and keep us posted on your situation. this is a great place for support
trish
 
 
Life should NOT be a journey to the grave with the intention of arriving safely in an attractive and well preserved body,but rather to skid in sideways,chocolate in one hand,wine in the other,body used up ,totally worn out and screaming"WOOOOHOO WHAT A RIDE!!!" 


Heppy
New Member


Date Joined Aug 2006
Total Posts : 15
   Posted 8/31/2006 6:07 AM (GMT -7)   
Hi Connie,

I am sorry for all the pain you suffered but I am so happy that you will have the tumor removed. I love to hear good news in these forums, since I do expect a lot of bad news. As for having blind faith in doctors, family, friends, it is a definite NO for me. I have to know what is good and real for my health and my life. Wow! I really to feel happy for you Connie. You have given me hope even though I don't know what the results will be with the hepatologist. Thank you for sharing your personal story with me Connie. I wanted to know something though. The question might sound stupid but did you feel lots of fear at any time you were going through all of this? There are some people who just glide right through health problems.

Heppy the Eppy
If your heart hurts, let love comfort it. If your mind is confused, let love make sense for you. If you are unable to see love, let love open your eyes. If you think love does not exist, take a closer look right here. You are loved.


Heppy
New Member


Date Joined Aug 2006
Total Posts : 15
   Posted 8/31/2006 6:22 AM (GMT -7)   
Hello Wheredidigo,

Thank you for taking the time to read my post. I too am sorry for all of your husbands complications. I do hope that your husband is doing much better and I am sorry that you have to change your specialist. It's too bad that we can't just have doctors today who really take their time with each individual patient. I personally prefer a doctor who cares about me when he/she is seeing me. I don't like feeling like I am just making an appointment and receiving a prescription, then sent on my way. I miss the good doctors. I guess what I am saying is that I don't trust most doctors anymore. I have had so many.

I will be seeing my hepatologist for the first time on Sept. 13. I didn't know that Hep B was curable within six months or less. I am not sure if mine is in remission or cured. The blood test shows that I have Hep B antibodies. That is all I know about Hep B. I have been in the dark for so long that I think its time to see someone who can give me some answers to my questions.

I truly appreciate you responding to my post and I sure do hope and pray that your husband recovers from his heart surgery. I have heard pretty bad things about interferon treatment, and I don't think that will be for me. I am also epileptic. Thank you for your encouraging words and I have already prayed for God to give you strength while you are going through this with your husband.

Hope you will keep us posted. :-)

Heppy
If your heart hurts, let love comfort it. If your mind is confused, let love make sense for you. If you are unable to see love, let love open your eyes. If you think love does not exist, take a closer look right here. You are loved.


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 8/31/2006 2:12 PM (GMT -7)   
Heppy, I honestly did not feel fear when I was diagnosed or prior to treatment. What I felt was disbelief. While I knew that liver cancer was a possibility for untreated hep C, I didn't expect it to happen to me. Because of working 15 years as a medical transcriptionist, and the training for that, I tend to be more objective than most people would. It was important to me to get information--to know exactly what I was facing and what was available--so after seeing the oncologists, I would get on the Internet to learn more. Knowledge and my faith in God seem to eliminate fear.

Hugs,
Connie

wheredidigo
Veteran Member


Date Joined Mar 2006
Total Posts : 605
   Posted 8/31/2006 4:20 PM (GMT -7)   
thanks heppy,,we take things day by day here,as most of us do...take care and will be thinkin of ya
trish
 
 
Life should NOT be a journey to the grave with the intention of arriving safely in an attractive and well preserved body,but rather to skid in sideways,chocolate in one hand,wine in the other,body used up ,totally worn out and screaming"WOOOOHOO WHAT A RIDE!!!" 

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