...

[Guest guest]

In a message dated 9/24/01 6:19:50 PM Pacific Daylight Time, dde8002000@... writes:

Hello I am wondering if anyone has had trouble with there skin? I have AIH My skin is very thin, tears very easy, I get blood mark with just a bump. This time my skin came of with the badaid!! Most of the bad ones are on my arms. I take prednisone 5 mg and azathioprine 50 mgs.I did get a new blood test to day. Is imuran any better? Please help if can thanks Sherry

Sherry, Azathiprine and Imuran are the same thing, so no help there. I believe skin thinning is typical with Prednisone use. It sounds as if yours might be rather extreme! Does your doctor know about this problem?

Since developing AIH, I get what I can only call hives on my chest, neck, and face. I don't know if that's related to the disease and/or medication, or if it's just a coincidence.

Good luck.

Harper (AIH 5/00)

[Guest guest]

Hello I am wondering if anyone has had trouble with there skin? I have AIH My skin is very thin, tears very easy, I get blood mark with just a bump. This time my skin came of with the badaid!! Most of the bad ones are on my arms. I take prednisone 5 mg and azathioprine 50 mgs.I did get a new blood test to day. Is imuran any better? Please help if can thanks Sherry Joan Claffey <joangardaclaffey@...> wrote: Hi,I have been in remission with normal labs for a longtime yet fatigue can still be a problem. I thinkfatigue is just a part of liver disease.Have you lowered any meds. lately? I remember witheach reduction in pred. I felt a strong withdrawal. It felt like a relapse fatigue. Joan ClaffeyNJ__________________________________________________

[Guest guest]

Thanks for trying to help! I did have my family doc. look at .She is never sure what to do with me. Me either!!! After i here what my blood test said ill call my doc at ohio State, if he don't call me first. thank for trying to help , some times this stuff gets me down . I can't seem to stay on top of it. He says we controll it , but i am not havr much luck. Every time i think I am doing good i get sick all over again Do you get so sick at my stomack I get hardly stand it . Thank for listening Sherry

flatcat9@... wrote: In a message dated 9/24/01 6:19:50 PM Pacific Daylight Time, dde8002000@... writes:

Hello I am wondering if anyone has had trouble with there skin? I have AIH My skin is very thin, tears very easy, I get blood mark with just a bump. This time my skin came of with the badaid!! Most of the bad ones are on my arms. I take prednisone 5 mg and azathioprine 50 mgs.I did get a new blood test to day. Is imuran any better? Please help if can thanks Sherry Sherry, Azathiprine and Imuran are the same thing, so no help there. I believe skin thinning is typical with Prednisone use. It sounds as if yours might be rather extreme! Does your doctor know about this problem? Since developing AIH, I get what I can only call hives on my chest, neck, and face. I don't know if that's related to the disease and/or medication, or if it's just a coincidence. Good luck. Harper (AIH 5/00)

[Guest guest]

Dear Debby,

The nose bleeds can also be caused by the increase in blood pressure due to the liver disease. The place of least resistance usually breaks and bleeds -- the nose and esophagus are the two most common areas. Randy had nose bleeds all the time in the later stages of AIH.

And I was his living donor but not related to him at the time. More and more people are having non related living liver donors. Just a thought for you....

Cheryl

[Guest guest]

azathioprine ---I thought this was the generic as Imuran.....

The thinning of the skin can be caused by the prednisone. That is what is happening with my nosebleeds. At least that is what I have been told...debby

Re: [ ] ...

Hello I am wondering if anyone has had trouble with there skin? I have AIH My skin is very thin, tears very easy, I get blood mark with just a bump. This time my skin came of with the badaid!! Most of the bad ones are on my arms. I take prednisone 5 mg and azathioprine 50 mgs.I did get a new blood test to day. Is imuran any better? Please help if can thanks Sherry Joan Claffey <joangardaclaffey@...> wrote: Hi,I have been in remission with normal labs for a longtime yet fatigue can still be a problem. I thinkfatigue is just a part of liver disease.Have you lowered any meds. lately? I remember witheach reduction in pred. I felt a strong withdrawal. It felt like a relapse fatigue. Joan ClaffeyNJ__________________________________________________

[Guest guest]

Ohhh WOW Cheryl...thank you for this information about donors! I thought it had to be a donor from the family or like that! Also, the nose bleeds are interesting. It never occurred to me that it could be from this disease. There is so very much that I do NOT know about this disease! The more I find out, the less I like! debby

Re: [ ] ...

Dear Debby, The nose bleeds can also be caused by the increase in blood pressure due to the liver disease. The place of least resistance usually breaks and bleeds -- the nose and esophagus are the two most common areas. Randy had nose bleeds all the time in the later stages of AIH. And I was his living donor but not related to him at the time. More and more people are having non related living liver donors. Just a thought for you.... Cheryl

[Guest guest]

How are you doing? And I must have missed the surgery thing..... when and what did you have done? Sorry I havent seen you on too much lately.... Hope all is better now...

Cheryl & Randy

[Guest guest]

How are you? We didn't hear from you for a long time.

Harper

[Guest guest]

Dear Cheryl & Randy - I picked up an early issue of Woman's Circle the other

day

and was surprised to find an article about liver cancer and a new

wxperimental drug

they were giving mice and it helped them. I am looking forward to reading

your article, when will it be on store shelves? I think you two are

fantastic. Before

Randy had his liver transplant did he ever complian of pain radiating up to

his shoulder. Mine has and it makes it kind of hard to write and use the

computer,

sometimes it gets very sharp. Warm Regards, Hewitt (mhe3053904@...

[Guest guest]

Dear dear ....

What a shock to hear that you were in the hosp....we had just talked after not hearing from you in awhile....

But I am glad that I also have seen that you are now home....and I hope you are feeling a whole lot better....

Just a little tip .....NO MORE DRIVING YOURSELF TO THE HOSP.....geeezzz ....call a cab .....a friend....

don't want to hear that you have cracked up your car trying to get to the hosp....what a bad boy....talking like a mom now...sorry....

I hope I will hear from you soon and that things will be better...

Take care

Luanne Ty's mom

[Guest guest]

Luann -

Thanks so much for being like a Mom. It ends up that I as so whacked out of it that I did crack off the rear view mirror on the passenger side of the car when I was parking it in the hospital parking lot by knocking it on a pillar. . . . . How dare they put pillars in the middle of a hospital parking structure. LOL

Well, I am feeling much better now and NOW I can't wait to get out of the house.

Soon, soon, I know. I am taking all things in time.

Thanks for your words.

Peace and Love

Cleveland

AIH 1990

[Guest guest]

Hi ....

thanks for thinking of us...it is a very tough day but things get back to normal pretty quick with Ty....he just wants to do the stuff he should be doing....it takes a day or two...but then he does pretty well...and we wait until he goes back for another treatment...that will be in June....so we have some breathing time...

again thanks...

take care and talk soon

Luanne Ty's mom

[Guest guest]

Hi...sorry to be so late in getting back to you about the Celebrex....your question was in an email from the 29th and the next day we had to take Ty to the ER and he was admitted....soooo I am finally getting around to reading and answering as I can...

Ty has been on celebrex a long time...was on it before his diagnosis with liver disease.....his RA was diagnosed when he was 11...

Unfortunately without the celebrex Ty is alot of pain...and his RA is in many of his joints...hips..knees...ankles...wrists...back...so getting an injection would not help...plus he gets Remicade...when the Remicade is stretched out he has alot of pain...and they have tried to lower his Celebrex when he was doing well...but within days he was not able to walk....sooooo...he has also had times where the swelling was so bad that the blood supply was cut off to his hand one time and his leg another.....sooo even though his playlets are low....we at this point don't have any options...

His doctors are hoping to get some more answers when he goes to the NIH....we will see...

take care and talk soon

Luanne Ty's mom

[Guest guest]

Luanne,

Thanks for your reply. I hope Ty is doing better from his recent hospital

stay. He is such an inspiration to me. You as a MOM have to get the MOM of

the Lifetime award for being so involved and staying strong for him. Having

a teenage male I know the struggle you have letting him grow up to be a man

and still trying to be his " Mommy " . I know when comes in and is quiet

and calls me " Mommy " something is wrong. Other times I'm MOM.

We MOM's have a difficult road to walk letting our son's grow up to be Men

and knowing when to step back and let them handle the situation when we want

to step in and " deal " with the situation. You do such a fine job at being

supportive and letting him handle his affairs as a young man. I find

inspiration in both of you.

How blessed you both are to have one another.

[Guest guest]

Hi ....

Whats a nice note to me....thanks sooo much...

As moms we are always wondering if we are doing the right thing with the teens...it was so much easier when they were younger....now we know that a mistake can really change who they are and how they feel about themselves....I so want Tyler to grow up and be a secure young man....and with him there are so many other challenges....

my other 2 ...now grown....le is almost 28 living in Chicago and is 24 living in Atlanta....have grown into wonderful...smart...independent ..loving...people...yet they have not forgotten where they came from....I can count on a call anytime during the week from them...they call me more than I call them.....lol...

calls everytime he is in an airport waiting for his plane to board....got one yesterday....and then another call when he lands....he flies alot now....and it was just something he started a few yrs back when the flying started....

Well again ....thanks for such a loving note...we can always use a boost on our parenting...anytime...

take care and talk soon

Luanne Ty's mom

[Guest guest]

-

Oh I know very well how Joe and Nick can be and I think they are both very

funny, I love reading their posts! It also makes me realize I'm not the only

single person here not getting any and hating it LOL Seriously tho, it's very

hard being single, in my case being a single mom, not being able to get out b/c

of back problems, not able to work, unable to meet people to socialize with not

to mention to date.....gets very depressing at times. I'm so very thankful I've

got my daughter (age 9), I know she's kept my sanity at times, I dont know what

I'd do without her around to talk to, it's bad enough when she's gone with her

dad for visitation every other weekend! It's not easy at all for any of us,

that's for sure, none of us have it easier than the other, whether married or

single, we're all in pain. Tho this sexual tension is a bit harder for us single

people to get a " handle " on.... LMAO Sorry, I had to.. after some of what I've

read, that's NOTHING LOL

Connie

--

_______________________________________________

Sign-up for your own FREE Personalized E-mail at Mail.com

http://www.mail.com/?sr=signup

[Guest guest]

Grace:

Thank you so much. You have been very helpful. You are right, the anxiety about just starting the meds is almost unbearable. I am fortunate because I reduced my work hours back in January due to the fatigue from the virus. That gives me 4 days to be at home and rest if needed.

Part of what scares me about potential side effects is the fact that I do have cirrhosis and the doc told me that treatment could be more difficult. I won't give up, however.

I am committed to following through with treatment because I believe that it is my best chance at eventually feeling better. I am not sure if treatment is to last 6 months or 1 year, I would imagine it depends on my response to the treatment.

Again, thank you so much for your advice. You have been very helpful to me with the information that you have posted to this group. I wish for you the best of health.

[ ] ...

Hi ,Congratulations on your courage to attempt treatment. I'm about to finish up 48 weeks (1b) and it took me a year before that to make the commitment to try it. I am very familiar with the anxiety of the anticipation of side effects and starting treatment.You probably know this already, but folks can only relate their experiences with side effects - which may, in turn, be vastly different than your experience. That said - I will relate my experience...Because I'm not inclined to take medications (prescription or over the counter) and have a tendency to be sensitive to all medications - I assumed I'd have horrible side effects (especially after reading so many horror stories), but I was wrong. The anticipation of the sides was far worse than the reality. I didn't experience the first shot woes that I have heard so much about and in fact wondered if I had mixed the medication correctly. Besides having a slightly elevated fever, I felt a little dizzy and that was it. That could have been because I didn't sleep very well after I took the first shot - I lay in bed and woke up every hour - I wanted to know if I was having any of the anticipated side effects :)I did run into trouble around week 7-8 when the mental sides started to hit and my body was adjusting to the meds (and I started to question my decision - a big no-no in my opinion if believe you are doing what is best for you). My blood work was a little off (red and white cell count) and that scared me some, but my body adjusted and all leveled out. My doctor tried to put me on at least 2 anti-depressants (first Paxil, then Zoloft) to which I politely declined as I didn't want to have to deal with even more side effects in addition to the confusion of which drug is causing which side effect. I did agree to a prescription of Ativan (anti-anxiety/sleep aid) to take the edge off as needed at work. Because my sensitivity to drugs - I immediately halved all the pills and took them very sparingly. I got a bottle of 20 of them when I started treatment and still have over half of them left.I started taking supplements as well. Beside the Peg and Riba I have been taking Vitamin E, Calcium/Magnesium, multi vitamin without Iron,Selenium and a liver formula that contains Milk Thistle, Dandelion Root, Genetian Root & Artichoke. For me - the effects have definitely been cumulative, the worst for me being short-term memory loss and mental confusion. And fatigue. In the beginning of treatment I had a surge of energy (the Riba makes me feel very 'speedy'), but working full time and managing a bitch of a commute got to me - made me very tired and cranky (especially men racing me for seats on the train Standing on a commute train for 45 minutes is not fun when all I want to do is sit and take a nap.Something else to consider - please know that I do not have Cirrhosis, I have mild Fibrosis and I do believe that can be yet another determining factor of side effects. I also have not been infected with the virus very long (since March 2000) - which I think can be another determining factor of side effects. I hadn't already battled for years and years with symptoms of being sick. Once you make the commitment for a treatment protocol - believe in yourself and your ability to discern what is good for you by what your body and your instincts tells you. Recognize and acknowledge any red flags. Know that attitude (and belief in your protocol) can make all the difference in the world. Partner with your doctor - don't follow him/her blindly. Question everything... they don't usually like that, but if they're good - they should at least respect it.One thing that I have done that has helped me tremendously is that I get copies of all my blood work. With an okay from the doctor - the lab mails the results directly to my home - so I don't have to wait to hear from the doctor to know how it looks.Good luck - I wish you much success!Grace> Grace:> > Thanks so much for posting this article. I feel much more at ease about having cirrohsis. I have been looking for more info about cirrhosis. I had no idea how long I could have it before my liver started to fail. I am going to recieve my first delivery of Pegasys and Rebetol (?) this a.m. The doc will give me the injection on Tuesday. I believe that because I am a genotype 2 I have a very good chance of clearing most of this virus. I wondered if anyone could tell me about side effects. How long before one starts feeling them? Is it more a cumulative effect? I know I may have no side effects or very little, but I want to know what to expect.> > Thanks,>

[Guest guest]

Thanks Bert.

[Guest guest]

Hello ,

May I ask, in the years that you've been helping people, what percentage have

you seen cured (if the program you have given was followed)?

 

Thank you!

[Guest guest]

,

What I do is very individual. I have never seen two identical cancer

patients. There is no protocol as such. Over the years I have found

certain meds or strategies far more useful than others. I like

certain targeting vaccines, PARP inhibitors, synergists, oncolytic

viruses, and strategies to unmask tumors from immune surveillance. I

like ion trapping.

I always start with determining intention, be it a distortive therapy

such as anything that produces extremes in the body's biochemistry in

an effort to find wedge issues, or if I can start immediately on

immune reclamation.

There are always wide variations in cancer patients, not only the

type, grade, and metastasis, but of weight extremes, Karnofsky score,

chemo history, budget, proximity, counterproductive (or supportive)

input from others, intelligence/understanding of the strategies,

discipline, age, co-morbid conditions, etc.

I am not a fan of any conventional or alternative strategy. Most are

quite mindless in their standard-of-care, one-size-fits-all

simplicity. Their popularity largely depends on marketing and/or

fantasy. The first part of our program is one of deprogramming, one

of critical thinking. Both the practitioner and the patient should

be epistemologists. This opens the door to true cooperation.

Percentages of restoration of health depends on prescreening. It is

that simple. If the numbers of turn-arounds that I see go above,

say, 80% then I am taking too many easy cases. If it drops below

that then I am taking too many human train wrecks.

At 10:34 PM 8/4/2009, you wrote:

>Hello ,

>

>May I ask, in the years that you've been helping people, what

>percentage have you seen cured (if the program you have given was followed)?

>

>Thank you!

>

[Guest guest]

Dear :

 

What kind of screening are you doing?

>Hello ,

>

>May I ask, in the years that you've been helping people, what

>percentage have you seen cured (if the program you have given was followed)?

>

>Thank you!

>

[Guest guest]

Again, there is no magic going on. Anyone who has worked with

thousands of cancer patients has a good idea if they can be helped or

not. You don't really have any idea if you can help them until you

do a history, physical, review records (radiology, pathology,

discharge summaries, etc.), draw blood (CBC, chemistry, markers, and

maybe mycoplasma), and do an informal psychological assessment. Once

results are in you usually know if you can help a person.

All too many alternative practitioners don't have access to the

tests, don't understand them anyway, so they become proponents of

some simple unifying theory of cancer leading to simple nostrums. Is

this any worse than the conventional poison mongers?

At 08:32 PM 8/5/2009, Bret wrote:

>

>Dear :

>

>What kind of screening are you doing?

[Guest guest]

Hi ,

Thank you for your response. I have a lump in my breast that is mobile, about

quarter size a little tender. Sister has breast cancer that they missed through

all testing. I just found this lump. I go in for a mammogram on the 12th. I am

44 eat healthy, no white flour and food with very little to no sugar. I am using

the sota magnetic pulser. I have started iodine drops. I am taking vitamin d

2,000 iu/day and cottage cheese/flax. I do make soy shakes every day as well. Is

there anything else I should be doing?

Again, there is no magic going on. Anyone who has worked with

thousands of cancer patients has a good idea if they can be helped or

not. You don't really have any idea if you can help them until you

do a history, physical, review records (radiology, pathology,

discharge summaries, etc.), draw blood (CBC, chemistry, markers, and

maybe mycoplasma), and do an informal psychological assessment. Once

results are in you usually know if you can help a person.

All too many alternative practitioners don't have access to the

tests, don't understand them anyway, so they become proponents of

some simple unifying theory of cancer leading to simple nostrums. Is

this any worse than the conventional poison mongers?

[Guest guest]

Wow , very interesting. How many people do you think die from chemo. I've

read 97% on average if they go conventional only. Do you believe this to be

true?

From: VGammill

,

What I do is very individual. I have never seen two identical cancer

patients. There is no protocol as such. Over the years I have found

certain meds or strategies far more useful than others. I like

certain targeting vaccines, PARP inhibitors, synergists, oncolytic

viruses, and strategies to unmask tumors from immune surveillance. I

like ion trapping.

I always start with determining intention, be it a distortive therapy

such as anything that produces extremes in the body's biochemistry in

an effort to find wedge issues, or if I can start immediately on

immune reclamation.

There are always wide variations in cancer patients, not only the

type, grade, and metastasis, but of weight extremes, Karnofsky score,

chemo history, budget, proximity, counterproductive (or supportive)

input from others, intelligence/ understanding of the strategies,

discipline, age, co-morbid conditions, etc.

I am not a fan of any conventional or alternative strategy. Most are

quite mindless in their standard-of- care, one-size-fits- all

simplicity. Their popularity largely depends on marketing and/or

fantasy. The first part of our program is one of deprogramming, one

of critical thinking. Both the practitioner and the patient should

be epistemologists. This opens the door to true cooperation.

Percentages of restoration of health depends on prescreening. It is

that simple. If the numbers of turn-arounds that I see go above,

say, 80% then I am taking too many easy cases. If it drops below

that then I am taking too many human train wrecks.

[Guest guest]

, with metastatic cancer patients it is very difficult to parse

out a cause of death. Both cancer and chemotherapy can cause anemia,

for example. There are many ways you can crunch the numbers on these

things, and again you only start to acquire meaning when all concepts

are clearly defined. Alternative practitioners show their bias when

they bandy about numbers like this. A chemo-oncologist shows the

same bias by using the term " benefit " without defining it exactly or

by a dismissive attitude toward all alternative medicine.

The decision to use chemo or not is often remarkably simple. Am I

now sinking? A quick google or PubMed search can let you know how

many more months of survival is offered by a chemo stratagem. Chemo

often extends life, but at the same time many chemos virtually

guarantee that there will be no long-term benefit. Is a chemo

candidate pleased with the offer of a few extra months that will

probably include unnecessary misery, a damaged immune system, and

physical ravages? Would it not be better to gamble on almost

anything else that is obtainable and affordable?

At 10:19 AM 8/6/2009, you wrote:

>

>Wow , very interesting. How many people do you think die from

>chemo. I've read 97% on average if they go conventional only. Do you

>believe this to be true?

>

>

>

>From: VGammill

>

>,

>What I do is very individual. I have never seen two identical cancer

>patients. There is no protocol as such. Over the years I have found

>certain meds or strategies far more useful than others. I like

>certain targeting vaccines, PARP inhibitors, synergists, oncolytic

>viruses, and strategies to unmask tumors from immune surveillance. I

>like ion trapping.

>

>I always start with determining intention, be it a distortive therapy

>such as anything that produces extremes in the body's biochemistry in

>an effort to find wedge issues, or if I can start immediately on

>immune reclamation.

>

>There are always wide variations in cancer patients, not only the

>type, grade, and metastasis, but of weight extremes, Karnofsky score,

>chemo history, budget, proximity, counterproductive (or supportive)

>input from others, intelligence/ understanding of the strategies,

>discipline, age, co-morbid conditions, etc.

>

>I am not a fan of any conventional or alternative strategy. Most are

>quite mindless in their standard-of- care, one-size-fits- all

>simplicity. Their popularity largely depends on marketing and/or

>fantasy. The first part of our program is one of deprogramming, one

>of critical thinking. Both the practitioner and the patient should

>be epistemologists. This opens the door to true cooperation.

>

>Percentages of restoration of health depends on prescreening. It is

>that simple. If the numbers of turn-arounds that I see go above,

>say, 80% then I am taking too many easy cases. If it drops below

>that then I am taking too many human train wrecks.

>

>

>

>

>

>No virus found in this incoming message.

>Checked by AVG - www.avg.com

>Version: 8.0.323 / Virus Database: 270.13.45/2285 - Release Date:

>08/06/09 05:57:00