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Author Topic: I just joined the site today.  (Read 23563 times)

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Offline Sherryl

  • Member
  • Posts: 5
  • Hep C 1a Viral Load > 3,xxx,xxx (3 million)
I just joined the site today.
« on: February 06, 2014, 03:07:33 pm »
I just joined the site today.  Hullo, Lucinda - kinda met you B4 (I asked U to write a better Petition) and Hullo, Folks:
I had a car accident in 1972, which is when I figure I got Hepatitis, although with all the many blood tests I had between then and 2010, not sure why it didn't show up until then. Yeps, that's 42 years.  I did ALOT of work in the intervening years.
My first gastroenterologist told me he did not recommend treatment for me at the time of the first visit.  On the second visit he had changed his mind - but I hadn't.
Last month he sent me an email suggesting that I wait "until they are approved", (meaning the New Medicine combinations).  After I was diagnosed, I took a week off work, spent day and much of the nights, researching and starting a new regimen of herbal supplements based around milk thistle and dandelion root, trying other herbs, too, some of which got left behind (like Reishi mushroom), others of which I continue taking to this day (like Cat's claw and  Olive Leaf, Garden of Life Raw B Complex and 50 and older Women Multivitamin with Minerals).  I know they are not curing me, but I know they are making a difference. Right after I started the regimen, my palms, opposite the thumbs, returned from the angry red they had become, to a more normal color.  And my urine changed from a dark yellow to a normal light color.  I have not taken the recommended dose of any of these, but a much lower dose. One capsule each day of the aforementioned until last year when my urine again began to darken; then I increased the Milk Thistle to 2 capsules a day, one at each meal, and it again lightened. My gastroenterologist kindly wrote the required return to work doctor's paper my employer required (2010).  And I retired early last year at age 62.
Like the originator of this post, I chose to wait because I do not believe in the odds for the Interferon treatment for Genotype 1a, without trying alternative solutions first. There is a Poll online right now which asks the Question: Are you waiting to start Hep C treatment until better drugs reach the market? 83% said yes, only 17% said no.  Best guestimates say the later part of this year for Bristol-Meyers Squibb and AbbVie approvals.  At this point I am hoping for an off-label combination of Gilead Sofosbuvir and  Bristol-Meyers Squibb Daclatasvir, being the 1a that I am.
Have I been tested, also, for an IL28B gene rating; if so, what is my rating (C/C, C/T or T/T)? Since 1/3 and 27% achieve SVR with C/T and T/T ratings respectively, I emailed my gastroenterologist recently.  I likely won't get a reply, because my Health insurance told me Monday (2/3/2014) that he can no longer be my gastroenterologist, as they no longer accept his medical plan.  I already have an appointment set for the middle of next month (March) with his replacement. I have also altered my lifestyle=only drink on two birthdays a year (it was 1 until my youngest turned 21 last month).  Eliminated hydrogenated oils and high fructose corn syrup from my diet. Do not take ANY tablets and only supplements that contain NO magnesium stearate or silica.  I made sure there is no fluoride in my water and bathe with a filter attached to my shower. Just recently,I stopped using Triclosan- the anti-bacterial liquid hand soap (I only discovered it's dangers recently).  I try to en-corporate more healthy living into my lifestyle as I learn.
AND I keep on learning.
Take Everything With A Grain Of Salt - Never Say Never - Make Love Your Aim

Offline jberlin

  • Global Moderator
  • Member
  • Posts: 321
  • Contracted Hep C in 76, treated 2004 & 2012, cured
Re: I just joined the site today.
« Reply #1 on: February 06, 2014, 03:50:07 pm »
Hello Sherryl & welcome - but sorry you are in 'our club'.  I contracted Hep C in 1976 during surgery, also 1a.  You and I could not find out we had it until they started screening for it for one thing.  I was told I had non type a, non type b hepatitis sometime in the 1980s when I tried to give blood, but had given plenty of times previously (sorry about infecting people), and when I asked what I should do about it, was told 'don't drink alcohol' - which I ignored a lot as a young man.  Milk thistle seems to be of some help, and even my hepatologist encouraged me to take it.  However, as has been mentioned on this board many times, the real reason to seek treatment is to save your life. You should have a liver biopsy and if your liver is being damaged, which it is - but how much is the question, go get treatment and rid yourself once and for all of this virus.  We have come from a 20%, to 40%, to better than 80% cure rate, going from over a year of interferon, now to 12 weeks, and soon perhaps no interferon.  But as bad as interferon, ribavirin and the protease inhibitors are for side effects, any of us can do it for 12 weeks! So, if your liver and over all health is good, and seems it will be for a while, wait a year, if not, don't risk it, just do it!  And, don't find just a GI, find a hepatologist, which is a GI that specializes on the liver.  Good luck, jack

Offline Sherryl

  • Member
  • Posts: 5
  • Hep C 1a Viral Load > 3,xxx,xxx (3 million)
Re: I just joined the site today.
« Reply #2 on: February 08, 2014, 02:38:43 am »
TY, Jack for the nice response.  I am planning to seek for a Fibroscan:

http://www.hepmag.com/articles/Fibroscan_biopsy_2501_24237.shtml

I also plan to ask my doctor about a Hepatologist, UNLESS he is willing to commit to going "off Label" with a New Drugs combo. for Hep C 1a.
Best to you Jack,
Sherryl
Take Everything With A Grain Of Salt - Never Say Never - Make Love Your Aim

Offline jberlin

  • Global Moderator
  • Member
  • Posts: 321
  • Contracted Hep C in 76, treated 2004 & 2012, cured
Re: I just joined the site today.
« Reply #3 on: February 08, 2014, 10:52:10 am »
Good luck, and do keep us informed.  I have had several liver biopsies over the last 35 years, and they aren't so bad now.  But if you can avoid, why not? 

There are really good Hep C treatment options available now, and more coming soon.  You won't want to go 'off label' if it means your insurance won't cover, as current options are like $70,000 in total.  One way or the other I predict you will be cured within 3 years!  Cheers, jack

Offline Sherryl

  • Member
  • Posts: 5
  • Hep C 1a Viral Load > 3,xxx,xxx (3 million)
Re: I just joined the site today.
« Reply #4 on: February 09, 2014, 12:42:39 am »
TY, Jack for the kind words and encouragement. I shall plan to try and keep in touch. Speaking of costs as they affect the New Meds., (and "approved" combinations, etc.), I feel that it is important that folks have a say and a choice.  Please check out:
http://wh.gov/lNAOJ
Things Can Change; as of January, Health Plans can no longer refuse to accept pre-existing conditions. We Need to achieve the cooperation of health plans, the FDA, and big-pharma; If you think there is even a 1% chance, Please support the above Link and pass it along.
Best to you Jack,
Sherryl
Take Everything With A Grain Of Salt - Never Say Never - Make Love Your Aim

Offline Marysee

  • Member
  • Posts: 48
Re: I just joined the site today.
« Reply #5 on: March 05, 2014, 09:24:26 pm »
Hi Sheryll, why no Magnesium stearate?

Offline Sherryl

  • Member
  • Posts: 5
  • Hep C 1a Viral Load > 3,xxx,xxx (3 million)
Re: I just joined the site today.
« Reply #6 on: March 07, 2014, 02:44:32 pm »
Per the following:
Material Safety Data Sheet Magnesium stearate MSDS by Sciencelab.com, Inc.

Section 3: Hazards Identification: "The substance may be toxic to liver, skin. Repeated or prolonged exposure to the substance can produce target organs damage". 

Section 11: Toxicological Information: "Other Toxic Effects on Humans:
Hazardous in case of ingestion".

Section 15: Other Regulatory Information: "This product contains the following ingredients for which the State of California has found to cause cancer,
birth defects or other reproductive harm, which would require a warning under the statute: Magnesium stearate California prop.65: This product contains the following ingredients for which the State of California has found to cause cancer which would require a warning under the statute: Magnesium stearate TSCA 8(b) inventory: Magnesium stearate"

Link:
http://www.sciencelab.com/msds.php?msdsId=9927217
Take Everything With A Grain Of Salt - Never Say Never - Make Love Your Aim

Offline Marysee

  • Member
  • Posts: 48
Re: I just joined the site today.
« Reply #7 on: March 07, 2014, 09:13:13 pm »
Wow, I just started to take it to try to alleviate my leg cramps. It just went into the garbage. Here I am going through this treatment, I don't need to introduce something that is potentially harmful. Thanks for the additional info.

Offline Sherryl

  • Member
  • Posts: 5
  • Hep C 1a Viral Load > 3,xxx,xxx (3 million)
Re: I just joined the site today.
« Reply #8 on: March 08, 2014, 12:57:50 pm »
"Drink a glass of water to which apple cider vinegar and honey have been
added. (The honey is simply to sweeten the vinegar and make it more
palatable.)"
I add a TABLESPOON of Braggs Apple cider vinegar to a glass of water.
Link:
http://www.legcrampinfo.com/vinegar.php

I hope the leg cramps are not from prescribed diuretics for high blood pressure diagnosis?
Take Everything With A Grain Of Salt - Never Say Never - Make Love Your Aim

Offline Marysee

  • Member
  • Posts: 48
Re: I just joined the site today.
« Reply #9 on: March 08, 2014, 02:14:21 pm »
I am on 2 BP meds Lisinopril and Metoprolol, no diurectics, but the Metoprolol definitely made the leg cramps worse. I will try the vinegar solution and let you know if it works. Thanks for the reply.

Offline lporterrn

  • Member
  • Posts: 1,969
  • LucindaPorterRN
    • LucindaPorterRN
Re: I just joined the site today.
« Reply #10 on: March 08, 2014, 11:52:12 pm »
Hi Sherryl - Looks like you are working really hard to stay healthy. Some really exciting hep C treatments coming soon, so you are looking at this at a great time. Love your attitude about learning!
Lucinda Porter, RN
1988 Contracted HCV
1997 Interferon nonresponder
2003 PEG + ribavirin responder-relapser
2013 Cured (Harvoni + ribavirin clinical trial)
https://www.hepmag.com/blogger/lucindakporter

 


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