Disclaimer

*Results may vary. The information in this site is NOT to be construed as medical advice. Cirrhosis of the liver is a serious condition and if you have it, you should see a doctor. I am not a doctor and am not able to dispense medical advice. My husband saw a doctor (many of them) and they were able to do things for him that I could not. However, they were unable to recommend alternative treatments, and in MY OPINION they were VERY beneficial to my husband, so I am providing some of that information here. My husband and I tried all of these alternative therapies at our own risk, and if you try them you will be doing the same. At your own risk. No promises are made in this blog. I am not saying there is a cure for cirrhosis or any other condition. However, I believe most people can get well, like my husband did. My husband is alive, happy, productive, functional and has his energy back. He no longer has to take medications and he no longer worries about having to go on disability or getting a $577,000 liver transplant. Cirrhosis is a serious condition. He is currently in the fibrosis stage (Stage 2 liver disease), which is still serious. I cannot guarantee you will have the same results. I just want you to know about what worked well for my husband. I hope you will share what you learned with others, and share your story with us as well. This blog was made for YOU! Thanks for visiting!

Saturday, September 22, 2018

Congratulations to my Hubby, for 5 years of Sobriety!

I just wanted to do this quick post to congratulate my husband on 5 years of sobriety.  I haven't had time to do a lot of posting lately, since I'm taking care of a friend with late stage cancer, but my husband is very proud of his sobriety, as he deserves to be. 

He quit drinking completely, 5 years ago - just before his birthday. Unfortunately, we learned the hard way that quitting is just the first step in recovering from cirrhosis, but it's a HUGE step, and 5 years is truly an amazing feat. I'm so proud of him, and want to thank him for having the strength to quit... and for the fact that I never have to worry about him getting a DUI!

For those of you who are still wondering if you should quit drinking, I assure it is WORTH IT, and I can assure you that your sobriety will improve the quality of life not just for yourself, but just about everyone around you!

Congratulations honey. You did good and I'm very proud of you : ). Thank you for letting me share your story, and I hope it will continue to inspire others.

xoEllie


Wednesday, September 19, 2018

A really fast, easy way to get lots of nutrition into your body

Since my husband had incredible results with taking Visalus supplements in 2011, I have recommended Visalus products to many, many people (the shakes and also the Visalus Vi Pak vitamins). I swear, this stuff made a huuuge difference in his health!! 

Well, in February of this year, I talked to a man from New Orleans who had inquired about the water, and in telling me about it, he mentioned some of the things that seemed to help him with his cirrhosis, and he swore by this nutritional supplement he'd been taking, called "Vemma."

Vemma Mangosteen Plus with Essential Minerals Two 32 Oz Bottles

Now, this guy RAVED about the stuff, but he wasn't even selling it, NOR could he even tell me how to get it!  It was like, some distributor had told him about it, and he got on the auto ship through the company, but then he didn't know how to even get ahold of the distributor anymore, but it worked really, really well for him.

I did some googling and found the company, and kept meaning to order it for my husband, since he feels that the Visalus vitamins are a bit pricey, but I never got around to it, and kept losing the link for the stuff.

Well, as some of you guys know, I am caring for a friend with stage 4 cancer, and she has been drinking the Visalus shakes, but she feels that they are too thick for her, and she doesn't like anything that is too sweet, so she really wants something that's easier to take. She has lost WAAAY too much weight, so I was desperate to order this stuff for her today.

I dug around my notes for the name of this stuff, and tried to order it online. I got so frustrated, because their website was just too confusing for me (the Visalus website is the same way!)

I tried to add this 2 pack of the Vimma liquid supplement (what the guy in New Orleans told me about), but after I placed the item in my cart, I couldn't find where the shopping cart WAS, so I couldn't even figure out how to check out!

So, I gave up and started googling for a local distributor, and couldn't even seem to find someone. So I kept looking, and lo and behold, I discovered that you can buy this stuff on Amazon! Not only will it be faster to arrive, but I'm going to save 40 bucks!!! Normally it's over $100 through the official company site, but it's about $67 (with tax AND shipping) through Amazon.

See, this is why Amazon is putting so many people out of business. I do feel a little bit guilty buying this kind of thing via Amazon because that makes it more difficult for distributors to make a living, doing what they do, and truth be told, distributors for these kinds of sites are not "supposed to" sell on eBay or Amazon.

But I WOULD HAVE ordered it through the regular site if 
a) I could have just FOUND SOMEONE, locally, who was willing to sell it, and 
b) If their website wasn't so darn confusing!

Anyway, I thought I'd mention this stuff to you guys, I've been meaning to do a post about it, but it's fallen to somewhere in the middle range of an extremely long to-do list. 

I will let you know how it goes, with this stuff. 

Ellie

Saturday, August 25, 2018

Study finds no amount of alcohol is safe to drink

My husband told me he wanted to share this with his kids. So I thought it was worth posting, here.


Monday, August 13, 2018

One more reason why it's important to EXERCISE when you have cirrhosis

I can't tell you what to do, and you should check with your doctor before starting any type of exercise regimen. But I have to say, it truly seems like the people who exercise and work out, seem to be the ones who get the best recovery results when they have cirrhosis.



https://www.ncbi.nlm.nih.gov/pubmed/10642360


J Appl Physiol (1985). 2000 Jan;88(1):41-6.

Intense exercise stimulates albumin synthesis in the upright posture.

Abstract

We tested the hypothesis that an elevation in albumin synthetic rate contributes to increased plasma albumin content during exercise-induced hypervolemia. Albumin synthetic rate was measured in seven healthy subjects at 1-5 and 21-22 h after 72 min of intense (85% peak oxygen consumption rate) intermittent exercise and after 5 h recovery in either upright (Up) or supine (Sup) postures. Deuterated phenylalanine (d(5)-Phe) was administrated by a primed-constant infusion method, and fractional synthetic rate (FSR) and absolute synthetic rate (ASR) of albumin were calculated from the enrichment of d(5)-Phe in plasma albumin, determined by gas chromatography-mass spectrometry. FSR of albumin in Up increased significantly (P < 0.05) from 4.9 +/- 0.9%/day at control to 7.3 +/- 0.9%/day at 22 h of recovery. ASR of albumin increased from 87.9 +/- 17.0 to 141.1 +/- 16.6 mg albumin. kg body wt(-1). day(-1). In contrast, FSR and ASR of albumin were unchanged in Sup (3.9 +/- 0.4 to 4.0 +/- 1.4%/day and 74.2 +/- 8.9 to 85.3 +/- 23.9 mg albumin. kg body wt(-1). day(-1) at control and 22 h of recovery, respectively). Increased albumin synthesis after upright intense exercise contributes to the expansion of greater albumin content and its maintenance. We conclude that stimuli related to posture are critical in modulating the drive for albumin synthesis after intense exercise.
PMID:
 
10642360
 
DOI:
 
10.1152/jappl.2000.88.1.41

Berkson Study: Adverse Effects of High Doses of Intravenous Alpha Lipoic Acid on Liver Mitochondria

I've heard that too much ALA can damage your mitochondria, but this is the first time I've seen the study he did, that says this.

I'm a HUGE fan of the Berkson protocol, and truly feel that it saved my husband's life, but I also know that too much ALA can damage the mitochondria (he says so in this interview on THIS PAGE). But this is the study that shows it.  

Thought I should post it here.  The link is below.

https://www.semanticscholar.org/paper/Adverse-Effects-of-High-Doses-of-Intravenous-Alpha-Vigil-Berkson/b706f02b1a88f58f14dec92421e9dbfdec63bc55



Adverse Effects of High Doses of Intravenous Alpha Lipoic Acid on Liver Mitochondria

Alpha lipoic acid (ALA, thioctic acid), among other actions, is an essential coenzyme in the conversion of pyruvate to acetyl co-enzyme A. Therefore, it is necessary for the production of energy for aerobic organisms. Scientists have found that it can be used medically to help regenerate liver tissue, reverse the complications of diabetes mellitus, slow or stop the growth of cancer cells, and chelate heavy metals, among other actions. In this article, the authors describe the cellular mitochondrial damage from excessively high doses of this beneficial agent. LESS

Wednesday, August 8, 2018

Stuff that really comes in handy when you're stuck in a hospital

I've stayed in the hospital way too many times over the last 5 years. First, with my husband... we were doing the tour de hospitale, in our area, for a 1-month period between Dec. 2013 and January 2014. He stayed at three different hospitals!  And then again, in May, I stayed at the hospital with my friend with stage 4 cancer, and faced the same challenges.

I was very lucky that I had a flexible schedule and didn't have a full time job, and was able to stay with both my husband and my friend with cancer, almost every hour. I also got lucky in that there was usually an extra bed or cot for me to sleep on.

You start to feel like a personal assistant, constantly on the phone, calling different doctors and nurses and alternative practitioners and trying to figure out what were the best things you can do, to save your loved one from death. In addition, you are constantly updating friends and family members, via email, phone and social media, to let them know how your loved one is doing.

When you're in this position, you face a lot of technological challenges. Your cell phone keeps dying, your cell phone charger isn't strong or fast or long enough, or you have terrible reception at the hospital.

Today, I found myself composing an email to a client who's husband is in the hospital, and I told her I was thinking of turning these recommendations (in her email) into a blog post, since I've been wanting to do this for a while.

So, I'm copying and pasting what I wrote to her (this is what I'd write to anyone with a loved one in the hospital, as we all seem to face the same challenges, trying to stay connected and wired, so we can be on the phone at any time).



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

I totally get it that it's frustrating to make calls from the hospital. The cell reception was terrible when I was staying at the hospital to help my friend with cancer, and so was my internet connection, and I was constantly facing a dying cell phone.
It definitely helps to have a morphie when you're in the hospital.  I'm thinking of getting one of these morphies, shown below, because it's so cheap ($100 off!) and seems to have the best reviews out of the ones I looked at.  I think I might put this info (below) in a blog post (been meaning to do that for a while) because so many people experience the same issues while they're staying with their loved ones in the hospital!!

This is a morphie (you may already have one). It really helped my cell phone to keep from dying, and I think I'm going to order this today because it looks like it's on a huge discount today and has good reviews.
I was really, really glad I ordered these LONG (six foot) charging cables (below), because it wasn't always easy to find an outlet that was close enough so I could comfortably sit in a chair while I was trying to charge my phone. And it was nice to be able to give one to my friend, as well. While she was in a hospital bed, she really liked having a long cable that didn't always feel too short for her to be able to hold her cell phone comfortably (if the cell phone cable is too short, you'll have to hold it at an awkward angle)

This one is 6 feet, is great quality, charges fast, and it's really cheap. I think the price went down even more since I got mine, so I might get another pair.

Micro USB Cable, Powerman Android Charger Micro USB Cables [2Pack,6.6Ft] Nylon Braided Fast Charging Cord for Android, Samsung, Galaxy S7, S7 Edge, S6, Kindle, Motorola, Sony, LG (Grey/Black)


I wish I could think of something that would give you better CELL RECEPTION, but I don't know of anything that is EASY and uncomplicated to use. I did consider getting something like THIS, but because I'm not very good with technical stuff I decided to pass. Somebody more technical than me could probably figure it out, but I could see myself just getting a headache : D

I am going to order this charger (below) today because I am constantly trying to charge different devices at the same time, and never seem to have enough outlets!! Today was the last straw, when my cell phone died, and I knew that if I could have just kept it charged while I had been on the phone, I wouldn't have dropped the call I was on. 

Universal Travel Power Adapter - EPICKA All in One Worldwide International Wall Charger AC Plug Adaptor with 5.6A Smart Power USB and 3.0A USB Type-C For USA EU UK AUS Cell Phone Tablet Laptop (Grey)

  
Also, keep in mind that cell phone radiation really CAN damage your cells and cause cancer (don't believe me? Look at the picture below, and then the videos).

 

You may want to consider getting an EMF protective cell phone case, for yourself and particularly for your loved one who is very sick and shouldn't be exposed to more oxidative stress

I bought a PONG case years ago and loved it, but the plastic crumbled after a few years. For the last 2 years I've been foolishly going without an EMF protection case, trying to not hold it in my hand or close to my head (but doing a poor job of following this rule, as I can't hear people in my loud car without holding it close to my ear). 

I notice my hand actually feels NUMB when I hold the phone for too long. If you look at images of what the cell phone radiation does to the body while you're holding it, it's pretty scary, so in my opinion, this is well worth the $40 investment, especially because I am on the phone A LOT.

Anyway, I am finally going to get one of these. I'd get another PONG case but can't seem to find one for my current phone.  This one had really good reviews, so I'm going to try it out.

 
 SafeSleeve GS6Bl Case Galaxy S6 Cell Phone Radiation Blocker and RFID, Black
































 



Protect yourself, people!

Ellie

Wednesday, August 1, 2018

Carvacrol (from Oreganol Oil) showing promise for healing Gastric Ulcers???


Whoah. You learn something new every day. 

I never would have thought this would be true, since oregano oil is a very strong type of oil that burns if you get it on your skin. So maybe they're just talking about the carvacrol extract (though I haven't looked into whether there is such a thing). But I had to share this, as I'd think many readers of this blog could find this interesting.


J Med Food. 2012 Nov;15(11):984-91. doi: 10.1089/jmf.2012.0102. Epub 2012 Aug 14.

Anti-inflammatory and anti-ulcer activities of carvacrol, a monoterpene present in the essential oil of oregano.

Abstract

This study reports a pharmacological evaluation of anti-inflammatory and anti-ulcer activities of carvacrol, a phenolic monoterpene constituent of essential oils produced by oregano and other several aromatic plants and spices, in experimental models of edema induced by different phlogistic agents and gastric lesions induced by acetic acid. In models of paw edema induced by dextran or histamine, carvacrol was effective at 50 mg/kg (46% and 35%, respectively); in these models, cyproheptadine reduced edema formation (61% and 43%, respectively). In edema induced by substance P, carvacrol (100 mg/kg) and ruthenium red (3 mg/kg) also decreased the edema formation (46% and 40%, respectively). Carvacrol significantly reduced the ear edema induced by 12-O-tetradecanoylphorbol acetate and arachidonic acid at 0.1 mg per ear (43% and 33%, respectively), similar to indomethacin at 0.5 mg per ear or 2.0 mg per ear (55% and 57%, respectively). Carvacrol (at doses of 25, 50, and 100 mg/kg) showed a healing capacity on gastric lesions induced by acid acetic (60%, 91%, and 81%, respectively) after 14 days of treatment. These results suggest that carvacrol acts on different pharmacological targets, probably interfering in release and/or synthesis of inflammatory mediators, such as the prostanoids, and thus favoring the healing process for gastric ulcers.
PMID:
 
22892022
 
DOI:
 
10.1089/jmf.2012.0102
[Indexed for MEDLINE]

Friday, June 8, 2018

If you are requesting more information about the water

UPDATE October 2018: I'm sorry to report this but my friend who was previously calling people about the water, has been swamped, and had to put all calls on hold. I sincerely apologize for this. However, my husband has expressed an interest in calling people recently, so if you've made a request, he may be the one calling you (just keep in mind, he works up to 60 hours a week, so it may take him some time to get back to you, but one of us will get back to you). I am also in the process of hiring someone to help me with callbacks, as it would take my husband too long to get through the list! I really apologize for all this. It's in my nature to work with tunnel vision, in a sort of obsessed way (and that's what it will take on my part, to help my friend get well). Please keep in mind that it is BECAUSE I work in this manner, that this blog exists at all. I hope you are able to find some information that will help you on this blog, until we are able to get back to you. Thanks for your understanding, and stay strong! 

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

Hi guys. I don't know where to begin to apologize to the people who've contacted me recently, as I've had a major family emergency and have been unable to respond to many requests for information over the last few weeks. Some people won't have the time or desire to read my long post explaining the details of what I've been going through, specifically, but if you do care to know more about what's been going on with me (and more details about recent events that have led me to have to change my policy about how I share info about thex water), I will be doing another post about that in the next day or two. 


The basic gist is, have been extremely busy helping my close family friend, whom I'll call Jane, who had to have emergency abdominal surgery, and was just diagnosed with stage 4 pancreatic cancer. Jane was my Dad's best friend before he passed away, and she's like my second mother (she IS family, to me). Helping her in the hospital (and staying there) has forced me to put a lot of things on hold.

if you have stage 4 cirrhosis - reverse.jpgWhile going through this crisis, I tried to (at least temporarily) disable the link for people to request more information about the water (hoping that if it was urgent, people would click on the red box I'd put in the left column of my blog, that would lead them to my phone # to call me direct). But somehow, people still kept filling out the form, so I think I must have that link on a different page that I just haven't had the time to update. I really apologize for this. For the last few weeks, a lot of things had to get put on hold in a big way.
 
I'm about to begin a new venture of figuring out how to reverse cancer, and I need to put a lot of time and effort into (hopefully) helping Jane beat this thing, in the coming months. As you guys know, I am the type who REFUSES to believe a person can't be healed, and given the fact that this woman has been more supportive of me in my lifetime, than just about anyone I know, Jane has to be my first priority right now. Period.  

Between helping my friend, and helping people who've supported me by getting machines, and keeping up with my day job, I only have about 1/10th the time I used to, to make calls, so I had to set up some guidelines about who I can call, personally. I used to have a lot more help with callbacks, from my friend who sold us our water machine. She's an expert on the water, so she was an ideal person to do callbacks, but then she got so busy with work, she was no longer able to help me on a regular basis. I learned the hard way, over the last few months that, when people request information about the water, I just don't have the time or resources to get back to everyone, myself (not in a timely manner).

Luckily, my friend just told me she is able to set aside some time to help me again, but she asked me to caution people that it could take as long as a week (possibly even more) for her to get back to you. If she's having a less-busy day, she could get back to you in a day or two, but I'm just trying to manage expectations so no one is upset if it takes her a while, because she's extremely busy and there are a lot of people who need her help, not just me. I can tell you, she is the most knowledgeable person I know of, when it comes to the machine we use (which is why I bought the machine from her... I wanted to buy it from the most knowledgeable person I could find), so in my opinion, she's worth the wait.   

Please note that she is unable to do international calling at this time, but if you book an info session with me, I can reimburse her for the call, and ask her to contact you if you're interested. 

It's a lot easier for my friend to talk to people about the water (instead of me) because she can keep it "just about the water." When I get on the phone, with a person in a "cirrhosis crisis," it's nearly impossible for me to not want to go over every little thing that my husband did, because I know what a frustrating nightmare cirrhosis can be. Once I get on the phone with someone, it's like a half hour conversation, minimum. It is very emotionally difficult for me to JUST talk about the water.  A phone call from me takes a lot more time and is much more involved, and I just don't have the time or energy to do it (free) anymore, while I have so many other things in my life that are vying for my attention.

It also takes a LOT of time and energy for me to properly educate each individual person about the water. Most people assume it should be a very simple process, and people have said to me, well can't you just send me information via email? As if all I have to do is send one email. Sorry, but that's not how it works. It takes a HUGE amount of time for me to create and share the information, and a person who asks me for info about the water will typically get about 12 emails from me (which I have to create myself - I do not use an automated system).  So unfortunately, this is something I can no longer do for every person, for free. 

In addition, I only share my information with people I've spoken with over the phone.  Right now I only have a couple of hours per day (max) that I can spend, talking to people. So, I need to reserve that time for the people who've supported me by purchasing a machine, or the people who've booked an info-session. On the positive side, if you book an info-session (which is $99), and you do choose to get a machine from me, I am happy to give you double your money back (so it's like getting about $200 off your machine).

I realize that there are people who will say that they don't have the money for a paid session, and I do understand that many people who call me are struggling with medical bills. We were drowning in debt when we got our machine (luckily, the woman who sold it to us told me about a way we could get one at an affordable price).  But please understand that if you don't have the money for an info session (which, again, would be refunded x2 if you get a machine from us), then you wouldn't have the money the actual machine, itself (which costs more than an info session), so there is not really any point in having me waste an hour of your time, talking to you on the phone and sending you information about it. 

I have talked to literally hundreds of people who were "just kinda curious about it" and I hope you can understand... I need to reserve my time for people who are serious about ordering a machine from us, because it takes away from the support I need to give to the people who've supported me. This includes Jane, my husband, and the people who've helped me keep this site going, by purchasing either a machine or an info session.

When people ask me about the cost of a machine, I tell them, it's less than 2% of the cost of a liver transplant. Mind you, it is NOT the same thing as a liver transplant. Nor is it a "treatment" or a cure for anything. I am not able to state that the water did anything at all, to help my husband, because I don't have the money to do a double blind study to prove it. All I know is that, a year after he drank the water, his Fibroscan score was out of the cirrhosis range. Was it the water that caused it? My OPINION is that the water was a big factor in his results, but I am not allowed to state this as fact.  This is why we personally guarantee our machines. The company has a policy where you can return it with a restocking fee, but if you get it from us, you can try it out for a month, and if it's not working for you, you can get all your money back including the shipping (you just have to fill out a form, showing you drank the water, and send it to me weekly).

If you DO book an info session, I can share with you much more information, besides just the info about the water, so at the very least you can learn about all the other things my husband did in his first years of recovery, plus some of my latest research. I tried to put everything on one page so it's a lot faster and easier to read. This is not medical advice. I can't tell you what to do. I'm just sharing what my husband did, sharing the research I've done, and giving my own theories.

I've spent HUNDREDS of hours, putting together information about the water, in a way that is designed for a person to clearly understand why I believe the machine we have, is the only one worth getting. It took me OVER 50 hours of research, to finally decide to get the machine we did, and I found this to be frustrating. The woman who sold us the machine spent a LOT of time explaining everything to me over the phone (several hours) and she sent me lots of information, which I very much appreciate. But I also found it to be kind of difficult to get through the information. And we don't have several hours to spend with each person on the phone, so I needed to come up with a faster way to educate people, in the fastest way possible.

I'm one of those people who likes to scan through information, and I prefer the "quick version for dummies" because I'm a very impatient person who gets easily distracted.  Knowing this about myself (and suspecting this could be the case for the majority of people who visit my site), I worked very hard to try to make it easier and faster for a person to read the information I've assembled. The info I've assembled is still not perfect, but it's designed to be able to help a person make a buying decision in about 1/10th of the time it took me to "get it," why this is the best machine to get. I am aware that most people who read my blog are very sick, and don't have 50 hours to do research on water ionizers!

So... all this being said....

You have two options, to get information about the water.


 
OPTION #1:

Fill out THIS FORM, to receive more information about THE WATER ONLY (U.S. Calls Only). I'm sorry, but my friend is unable to make international calls at this time. Please note, it could take up to a week (possibly a little longer if she's swamped) for her to get in touch with you. She's one of the most knowledgeable people there is, when it comes to this water, so she is in high demand. She WILL get back to you, but I'm just trying to keep your expectations low, so that you're not annoyed if it takes a while. 

 
OPTION #2:

Book an info-session, with me, for $99 (international calls ok).  CLICK HERE to fill out the form, to request a session.


This includes:

1) A half-hour phone call from me. 


2) Access to my private blog, "25 Things I Want You To Know if you have Cirrhosis." This blog is my way of saying thanks to the people who've been supportive of me. It contains the most important information that I felt was helpful to my husband, in addition to some things that are not found on my public blog. Please note, YOU MUST HAVE A GOOGLE (gmail) ACCOUNT, in order to access my private blogs. It's easy to sign up for an account, if you don't already have one. Just go to Gmail.com.

3) Access to my private blog about the water. The information on this blog is slightly different from what you will get if you request information from the woman who sold us our machine. On my blog I list my theories as to why I believe the water helped my husband. True they are currently just my theories, but to me it makes perfect sense. There's also medical research, videos of people with cirrhosis talking about the water, and doctors. 





4) Qualification for double-your-money-back, if you purchase any machine from us ($198 value)

5) Additional support. If you purchase a machine from me, you can also get help from the woman whom we bought our machine from. She is very busy, but if you are serious about ordering a machine, she can reserve time for you. I just can't keep burning up her time, asking her to call hundreds of people who were just "kinda curious" - which is what I did to her for the last 3 years. It totally burned her out, and I need to take protective measures to ensure this does not happen to her again. I NEED this woman to help my clients, so I need to be protective of her time. She can tell you exactly what you will need, to hook up your machine, and if she has time, she may also be able to take your order over the phone (or we can give you an order link).
 
Please note, if you book an info session, I am unable to tell you how to "treat" or cure cirrhosis. I can only share information with you. I cannot tell you or your loved ones, what you SHOULD do. I can tell you what my husband did, and what I'd personally do if I had cirrhosis, or if my husband got sick again. I can share what I'd share with any close friend or family member. But I can't tell you what to do, because I'm not a doctor and I can't give you medical advice. 

Just because something appeared to work for my husband and others, does not guarantee that it will work for every person. It's up to you to do your own research, and monitor yourself (or your loved one) constantly. A person with cirrhosis is extremely fragile and every single thing you do, involves risk.  We had to take a LOT of risks and try a lot of different things, to figure out what worked the best for him, but I'm so glad we did. 
     

For those of you who feel that you can't afford an info-session, please note that there is a TON of free info on this public blog, that will show you lots of different things my husband tried, in his first year of recovery. It cost me a lot of money to learn what I did, because the time I spent, doing massive amounts of research for my husband (and keeping up this blog), took away from time I could have been spending making money in another field.  Anyone who is going through The Financial Hellhole That Is Cirrhosis knows, it takes a LOT of time, money and energy to get back on track!

I don't regret the time I spent, making this blog - I have had many nice comments over the years, that the information I've posted here, has been helpful.  I really do appreciate the positive feedback I've received, over the years, and I appreciate all the people who took the time to get in touch and share their stories with me. I may not have as much time to talk to all the people I'd like to, in the future, but for every person who managed to make it to the bottom of this post, I do appreciate you, and I hope you will be able to find the information that will help you (and your loved ones) to heal from cirrhosis.

Ellie

Sunday, May 20, 2018

The Black Box Warning and Prescription Meds like Antibiotics - What you Need to Know

I never knew what a "black box warning" was, until a few years ago. I discovered that many of my husband's medications, which I assumed were relatively safe, had some SERIOUS side effects, that in my opinion, made his condition worse. 

Here's the quick google-search-definition of a black box warning:

A black box warning is the strictest warning put in the labeling of prescription drugs or drug products by the Food and Drug Administration (FDA) when there is reasonable evidence of an association of a serious hazard with the drug.

Black Box Warnings|Compliance and SafetyAsk a Pharmacist | Health ...

https://www.walgreens.com/topic/faq/questionandanswer.jsp?questionTierId=900002...


A few years ago I was in my car, talking to a guy who's pharmacist (who was also a family friend), told him that the antibiotic he was just prescribed could kill him. The friend (who'd been the family's pharmacist for a long time) said, "I could lose my job over this, but I have to tell you this."

I asked the guy what antibiotic he was prescribed, but he couldn't remember. So I finally just got around to googling antibiotics that have black box warnings, and you can see the list further down the page. I was surprised to see Cippro is on that list.... I took that stuff MANY times, for bladder infections, in my 20s and 30s. 

Rifaximin is the antibiotic that seems to be most commonly prescribed for people with hepatic encephalopathy. You can read more about that drug HERE. Rifaximin doesn't have a black box warning, but if you scroll down that page, you'll this part, which does make me feel somewhat uneasy:


What should I discuss with my healthcare provider before taking rifaximin (Xifaxan)?

You should not use take this medication if you are allergic to rifaximin or medications such as rifabutin (Mycobutin), rifampin (Rifater, Rifadin, Rifamate), or rifapentine (Priftin).

If you have any of these other conditions, you may need a rifaximin dose adjustment or special tests:
  • severe liver disease;
  • diarrhea with a fever; or
  • watery or bloody diarrhea.

Spironolactone (not an antibiotic but a common diuretic given to just about everyone with cirrhosis) also has a black box warning, and you can read about that by clicking HERE.  You can also read about the serious side effects of Furosemide (another common diuretic that's typically given with Spironolactone) by clicking HERE.  And PLEASE be sure to read THIS PAGE, as well.


FDA orders 'black box' label on some antibiotics

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(CNN) -- The U.S. Food and Drug Administration Tuesday ordered the makers of certain antibiotics to add a "black box" label warning -- the FDA's strongest -- to alert patients of possible tendon ruptures and tendonitis.
Cipro is one of the drugs for which the FDA will require a "black box" label warning about tendon problems.
Cipro is one of the drugs for which the FDA will require a "black box" label warning about tendon problems.
"The new language will strengthen the existing warnings," said Dr. Edward Cox, director of the FDA's Office of Antimicrobial Products.
The FDA is requiring the label warnings and a medication guide for fluoroquinolone drugs, which include Cipro, Levaquin, Avelox, Noroxin and Floxin.
The consumer group Public Citizen asked the FDA in August 2006 to put the "black box" warning on Cipro and other fluoroquinolones, and also to warn doctors. Earlier this year, Public Citizen filed a lawsuit to force the FDA to take those actions.
Public Citizen said Tuesday it was "pleased" with the FDA's order but added "there is still more that the FDA must do."
"The FDA is silent on our request that it also send a warning letter to physicians clearly describing possible adverse reactions, such as tendon pain, so that patients can be switched to alternative treatments before tendons rupture," the group said. "We are troubled that the FDA is not doing everything within its power to prevent more people from needlessly suffering disabling tendon ruptures."
When asked about the lawsuit and why it didn't order the "black box" label warning until now, Cox stressed that the FDA included warning information with the drugs from 2001 until 2004, and updated the information last year. Video Dr. Gupta explains more on antibiotic risks »
"There has been ongoing work to update the labeling of the fluoroquinolone drug products," Cox said. "We have been working on this issue and making progress over time."
The companies that make the fluoroquinolone drugs will be required to submit label safety changes and the medication guide within 30 days of receiving the notification from the FDA or provide a reason why they do not believe such labeling changes are necessary, Cox said.

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Bayer HealthCare Pharmaceuticals Inc., which holds licenses for Cipro and Avelox, said it would make the changes requested by the FDA but defended the drugs as "well-tolerated and effective in all approved indications." Schering-Plough markets Cipro and Avelox in the United States under agreement with Bayer.
Ortho-McNeil-Janssen Pharmaceuticals, which markets Levaquin in the United States, also said it would abide by the FDA's request.
Merck & Co., the maker of Noroxin, said it, too, would update the drug's label. But Merck noted it has stopped promotion of Noroxin because of the widespread availability of its generic form.
Oscient Pharmaceuticals (Factive), Daiichi Sankyo (Floxin) and Dipomed (Proquin) did not immediately respond to CNN's requests for comment.
The fluoroquinolones drugs can increase the risk of tendonitis and tendon rupture -- which is about 1 in 100,000 -- by three to four times, according to the FDA's Dr. Renata Albrecht.
"This risk is further increased in those over age 60, in kidney, heart, and lung transplant recipients, and with use of concomitant steroid therapy," the FDA said in a statement.
Albrecht said that sometimes patients have no symptoms before they experience a rupture in their tendon -- commonly their Achilles tendon.
"Sometimes it's been reported on the first day of taking a fluoroquinolone ... a sudden snap or popping sound that is tendon rupture with no preceding warning," she said.

Health Library

  • MayoClinic.com: Achilles tendon rupture
  • MayoClinic.com: Tendonitis
Normally, she added, that patients experience some pain or inflammation "a week or two before the patient will rupture."
Public Citizen, founded in 1971 by consumer activist Ralph Nader, said more than 400 cases of tendon rupture and more than 300 cases of tendonitis in patients using fluoroquinolones were reported between November 1997 and December 2007.
"Because only a small fraction of cases are typically reported to the FDA, the actual number of ruptures and other tendon injuries attributable to the antibiotic is much higher," the group said.
The FDA would only say that it has received "hundreds" of reports of tendon problems linked to fluoroquinolones, without being more specific, citing the ongoing lawsuit. But Cox said "the FDA continues to receive a considerable number of reports on tendon adverse effects."
Patients should stop taking fluoroquinolone antibiotics at the first sign of tendon pain, avoid exercise and contact their doctor, the FDA said.
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Cox said the FDA would not require companies to send letters to doctors alerting them about the connection between tendon problems and the antibiotics.
"It is possible under REMS [Risk Evaluation and Mitigation Strategy] to ask for a letter [to doctors]," Cox said. "Certainly for sponsors that would choose to go forward with a letter, we'll be happy to work with them."
Had to share!
Ellie