I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: General Discussion => Topic started by: lynnrlpd1 on December 06, 2012, 04:47:01 PM
-
Has anyone tried this probiotic - Renadyl. Originally it was called Kibow and then they recently changed the name and started calling it Renadyl. Suppose to help kidney function in that it eliminates toxins. I know there was a thread a while back with the one person who claimed it was helping him but has anyone else tried it? I've been on dialysis for eight months and I will try anything because as the board is titled "I hate dialysis."
-
just looked it up......... sounds very interesting, hope you/we get some input.
-
With kidney failure the issue is not typically "toxins." It is that the structure of the kidney has been broken down, damaged or scarred. In the case of an injury, or acute kidney failure, some folks get back kidney function after some healing. In the case of CKD chronic kidney disease, the treatments are dialysis or transplant.
As the website for Renadyl says "These statements have not been evaluated by the US Food and Drug Administration. This product is not intended to diagnose, treat, cure, or prevent any disease."
They sell it for $45 per bottle but it does not say how many pills are in each bottle. http://stores.renadyl.com/-strse-4/Renadyl--dsh--3-bottles/Detail.bok?mbanner=1
Their press release from last year http://www.hospitals-management.com/news/news_archives.asp?NewsID=9497 states their affiliation in trials with a couple of hospitals. Why are they selling it retail making claims that are still in clinical trials. http://clinicaltrials.gov/ct2/show/NCT01450670
If it sounds too good to be true. it is. That's my opinion.
-
These kind of supplements are NOT regulated by the FDA. You have no way of knowing what is in them. Often they include herbs or other products that will interact with your other meds and cause problems. They do not have to tell you what's in there. Also a lot of these companies use sloppy manufacturing processes. It could have metal or glass or dirt in it.
Plus, unfortunately, there is no cure for ESRD.
-
I am one who will not try anything that is not perscribed by my dr. or is said to substitute for dialysis.
-
It would be nice if these worked, but if you're at the dialysis stage, I seriously doubt they will. Most of the herbs sold as kidney aids are water pills, pretty much, with the same goal as lasix, which probably works better.
-
Did the inventor win the Nobel Prize for Medicine? I think not. If it worked to reverse kidney fialiure, the inventor would win that prize.
I put these pills in the same catagory as um, er, "male enhancement" pills. No Nobel Prize for those, either. :thumbdown;
-
:cheer: YES! I have been taking Renadyl since mid-July 2012! And YES, it made a dramatic difference in my condition!!! On July 13th, my primary doc phoned to tell me she was very alarmed at my latest lab results. My GFR had dropped to 13, my glucose, always in the normal range, was double normal level. I had been feeling and sensing that I was in rapid decline for previous 2-3 months. I even began to select my reading material with an end-of-life slant. I can usually tell what's going on with my own body/health, am very tuned inward. I had been feeling so poorly that I searched online and came across Dr. Jenna Henderson, a naturopathic doctor who herself is a longterm kidney patient. I had planned to pay the $140 for a phone consultation with her to try to get more insight and support about my already very pro-active stance over the past 5 yrs. Docs say I am their most proactive patient and I surprised them all by slowing down my disease and loss of kidney function to half the speed it initially was declining. I have always kept them fully informed about the supplements I take and the dietary precautions I take with regard to potassium, protein, etc. So, after my doc's phone call, during which she said it was time for me to consider starting dialysis, I convinced her to give me a few more days to try to raise my GFR on my own. Prior surgeries to create fistula grafts on my arm failed due to chemo damage to my veins. I knew dialysis would be daunting for me, my body reacts to surgeries with fevers, erratic bp, A-fib increases. I contacted Dr. Henderson and got a one hour phone consultation with her. She was extremely knowledgeable and professional and also emailed me govt research documents on every supplement she recommended for me, so I could also provide my neph team with the docs about what supplements I was adding to my regimen, including Renadyl. I followed her recommendations and made immediate changes and recorded everything I ate on www.fitday.com to make sure I was really being precise about my nutritional intake. Yes, it required me to spend time daily recording my intake and making sure to take the supplements 3 times daily with food, too. My appt with my nephrology team was in 5 days and I told my doctor I was determined to raise my GFR by then. Yes, I am well aware docs will tell you that of course we can tweak our GFR scores by hydrating better, etc. but is it really an improvement? Well, 5 days after feeling awful and with a GFR of 13, I got labs and exam and my GFR was raised to 18 and I already KNEW I was much better, I could feel it. My nephrologist pointed out that the Renadyl had same composition as other dairy-based probiotics. I gave them the research docs and pointed out that Renadyl differs from other probiotics because the cultures selected are those with a specific appetite for those substances toxic to the kidneys. The goal is to reduce the burden on the kidneys by getting your food processed better in your colon to remove some of the burden from your sick kidneys. My kidney diagnosis is cisplatin nephrotoxicity, which is the chemo I received 31 years ago in massive doses that usually killed the patients sooner or later with ESRD, if the ovarian cancer didn't. That chemo did not erradicate my cancer - turns out recent research has shown some ovarian cancers are resistant to cisplatin. Nutrition and Linus Pauling's megavitamin therapy and radiation and other health supportive practices are what cured me.
Okay, now about the Renadyl results in my case. First of all, after 30 yrs of suffering severe radiation IBS, which also exacerabated my kidney disease because it left me dehydrated all the time and nutritionally compromised, my stomach calmed down and the IBS symptoms were totally gone!!! By the way, in the past, I would take probiotics after any course of antibiotics, but they were never strong enough to help my IBS or the kidney disease symptoms I had for yrs before my ESRD diagnosis. My energy level rose dramatically in the first 3 days. I could feel how much better my kidney function was. In fact, in two more days, my GFR rose to 20! The Renadyl was what made the dramatic improvement in my condition and kept me going long enough to be able to find a donor and get us tested and then wait for my transplant to be scheduled (Jan 2013). I live on social security and have no other source of income, nor do I own any property. I know how to be frugal and of course I investigated the possible alternatives to Renadyl. I found that the price is comparable to other probiotics BUT the Renadyl is far more populated, a much more powerful product and those little critters were selected for their appetite for kidney toxic food byproducts in my colon. Clearly, I had dramatically improved and I could not find a probiotic substitute for the Renadyl, nor did I want to take a chance when the Renadyl had worked (and continues to work) for me!! The other supplements that Dr. Henderson recommended me to take are CQ10, Curcumin, amalaki (a bitter herbal powder to mix with water) and a product called Vein Integrity, which is a mixture of herbs in capsule form. She also recommended I take charcoal capsules to remove more toxins and because they have to be taken on empty stomach I would take them when I awoke to pee once a night. The initial black stool from the charcoal soon normalized (no more black tarry stuff) after a couple of weeks and now I take the charcoal once a wk only. When I read the remarks some of you posted about the Renadyl, it was obvious to me that you were commenting without any personal experience or knowledge of the product. Apparently, I am the only one who is actually taking it and for sure I am not going to spend $ on nonsense. It's hard for me to even pay for heating fuel this winter!! My only outings are to the doc for labs, etc. cause I try to save on gas and of course, am not strong enough to be physically active. I live next door to my daughter and she does most of my food shopping for me and has become my advocate/caretaker and will do so post-transplant, too.
Please do not be so close-minded, so suspicious of whatever does not come to you via the establishment of medicine or the media which is controlled by big money interests. Pharmaceutical companies and conventional medicine are only part of the armory you have at hand to help you survive serious illnesses. My nephrology team has been impressed with my successes over the past 5 yrs and continue to be so since I pulled myself back from what for me would have been a nightmare of dialysis. I have already had a stroke and have a-fib and erratic bp from the kidney disease, so dialysis, which technology has reduced to rapid 3-4 hr process that severely burdens the cardio system, but allows dialsysis profiteers like the two major dialysis provider companies you all are familiar with, to process twice the number of patients daily (thus doubling their profits) - dialysis would no doubt put me in hospital with complications even more often than the 3 annual hospitalizations average for each patient. Chest catheters increase those risks, too.
Whether you have cancer or kidney disease or diabetes - nutrition and supplementation make an enormous difference. Most nephrology teams do not put patients on renal diet until they get on dialysis. Let's face it, getting people to change their diets is hard because people are resistant to change and absurdly covetous about their food choices. Limiting postassium and protein and phosphorous can be a challenge - all the healthy stuff (which I love) like fruit and veggies and nuts - have potassium and it adds up quickly. The nutritional and supplemental things I did in the past are the reason I am one of the rare patients who survived the advanced ovarian cancer I had and slowed down the progression of kidney disease for past 5 yrs since my diagnosis in 2007. When I first moved to NH and met my doctors, they told me a few yrs later that they did not think I was going to "make it" when I first showed up. I was in terrible shape. I was on crutches, cane or wheelchair, short on oxygen, faint, no appetite, highly acid blood with that awful metallic taste in mouth, losing weight rapidly, irregular bp going from 90/50 to 180/90 throughout the day.
No one has claimed that Renadyl is a cure for kidney disease. It drives me nuts to see commentary about nobel prizes and cures in this discussion. Renadyl is one of the tools that works to help spare your kidneys, to ease the burden on them, to prolong their function and to make you feel better. No one won the Nobel prize for the many prescription drugs we take to relieve our symptoms. No one won it for the allopurinol I take in a half-tablet dose once each night (I gradually reduced the dose from the original amount 5 yrs ago) and I no longer suffer from the severe gout I used to have for months at a time. The magnesium gluconate I take daily has completely resolved super intense ankle bone pain and it began working within 5 days after I first started it. No Nobel prize for that, either.
Renadyl does not substitute for dialysis and for sure, Kibow does not suggest that it does! If I seem passionate about this, it is because too many people don't take participate in their own healthcare beyond showing up for appts and taking their meds. Renadyl is not a diuretic. It is not a cure. It is what has helped me when finally all my nutritional and lifestyle measures, which worked for a few years to slow down my ESRD, finally were not enough and I needed to find something more to stay alive while I sought a transplant.
There are many forms and causes of kidney disease and we all have our own individual disease progression and symptoms. The FDA is guilty of approving some pretty dangerous drugs and that's been proven. I have worked in medical and biotech industries and I know a little about this subject. Aspartame is one example of many products that should never have been approved and is highly destructive to human body. Patients who do the best, whenever improvement is still possible, are often those who are pro-active and do everything they can do to augment conventional medical treatments. I am one of those patients and I am alive today because I am more than an automaton and the least I can do is provide the best support I can for my body while the docs do their stuff. I consider myself to be a key member of my medical team of professionals when it comes to my health. I read up on this stuff daily and I don't take foolish risks by trying questionable or dangerous therapies. I don't drink coffee, alcohol, eat processed foods or use artificial sweeteners or smoke cigarettes (really deadly for kidney patients). The kidneys are involved with all of your major body systems - brain, heart/cardio, digestion, eyesight, bones, all of it. Why wouldn't you do everything you possibly can to support your kidneys as soon as you are diagnosed? Generalizations about sloppy manufacturing processes has nothing to do with this subject. Human error and sloppyness is part of every aspect of being a consumer and Kibow and their product, Renadyl, has no negative history of any such sloppyness. In fact, my shipment from them arrives overnight and is packed to stay cold and I keep it in the fridge. Their excellent customer service and quality control is quite apparent. My family is thrilled that I have been able to hold on since July and kept my GFR high enough to keep going until my transplant. I am thankful to have spent the consultation fee cost on consulting Dr. Henderson and sooo glad she got me onto the Renadyl! For those of you who don't want to do more than show up at doc appts and fill prescriptions, what's YOUR game plan to prolong your life and/or improve the quality of it? Please don't rely only on prayer and hope. At the very least, there are things you can do to improve the quality of your life and how you feel physically. Renadyl has been a great value to me. My kidneys are too damaged to function fully and that's where Renadyl helps me, by lightening the burden on my sick kidneys. My lap charts and graphs show a dramatic improvement since July 2012. FYI, this long post is simply me being my passionate self when it comes to topics I feel strongly about. I am a survivor. Nearly every miraculous survivor I knew when I was a cancer patient and later worked in that field, was pro-actively involved in nutritional and lifestyle changes to heal themselves and to support their bodies during their conventional treatments.
-
I am very much an advocate for homeopathy BUT I will not try anything until I have shown it to my family Dr. She has taken care of me and my husband for 20+ years and I trust her completely. My suggestion would be to print out some paperwork and take it with you to your Dr. Go through it with them and see what they say. DON"T try anything without their approval! It could have negative effects with any other prescriptions you are taking.
-
That was the longest piece of BS I've read in a while. The info on the Renadryl website is so full of hooey masquerading as science. Please do not put your hope in miracle cures.
-
When your GFR is below 20 you're considered to be eligible for a transplant with dialysis looming. A GFR of 18 isn't much better than a GFR of 13. One bad flu and you could be in dialysis.
-
okarol, do you mean that if someone has a GFR of 18 and is not on dialysis yet, a bad flu could push him to dialysis?
-
okarol, do you mean that if someone has a GFR of 18 and is not on dialysis yet, a bad flu could push him to dialysis?
When you are that close to needing D, any physical trauma can add stress to the kidneys and drop your function levels quickly. The fever and vomiting that come with the flu can certainly do that. This is why docs push ESRD patients to have an access in place long before their function drops low enough to need D. A medical history of a slow, steady progression down does not mean it's going to stay that way until it's time to start.
-
thanks for the reply Jbeany. I notice you have a cat, that's great ;) are you on PD or HD?
-
thanks for the reply Jbeany. I notice you have a cat, that's great ;) are you on PD or HD?
I was on hemo. My transplant is 3 years and 4 months now. :)
-
okarol, do you mean that if someone has a GFR of 18 and is not on dialysis yet, a bad flu could push him to dialysis?
As jbeany said, the flu can do it. We were also told that a urinary tract infection can also knock out what's left of kidney function.
-
My husband tried it and it did not help him. He says that he feels its more for pre-dialysis patients but he gave it a try anyway. Best wishes
-
I believe there is sound science behind the use of probiotics to help pre-dialysis patients. This study http://www.ncbi.nlm.nih.gov/pubmed/20721651 (http://www.ncbi.nlm.nih.gov/pubmed/20721651) concluded: "The main outcomes of this preliminary trial include a significant reduction of BUN, enhanced well-being, and absence of serious adverse effects, thus supporting the use of the chosen probiotic formulation for bowel-based toxic solute extraction. QOL and BUN levels showed statistically significant differences in outcome (P<0.05) between placebo and probiotic treatment periods at all four sites (46 patients)."
Here's another article lending to the credence of the use of this therapy for dialysis paitents: "Finally, pre- and probiotics together in a symbiotic have been tested in hemodialysis (HD) patients to see if the amount of p-cresol could be reduced (Nephrol Dial Transplant 2011;26:1094-1098). The symbiotic was tested in nine HD patients for two weeks. The patients were surveyed on their bowel habits and p-cresol was measured pre and post treatment. At the end of treatment, p-cresol significantly decreased and stool volume and consistency had improved."
It also looks like they are launching new studies in this area as well. It's absolutely not going to reverse kidney disease, but it may be able to help lighten the toxin load on your body overall. Combined with eating right, being active, watching your blood pressure and staying healthy in all aspects of your life, this could provide for better health for dialysis patients and possibly even delay dialysis for those that are pre-dialysis.
*1/31/13 - AGuyNamedKim - Clarified my last sentence.
-
okarol, do you mean that if someone has a GFR of 18 and is not on dialysis yet, a bad flu could push him to dialysis?
As jbeany said, the flu can do it. We were also told that a urinary tract infection can also knock out what's left of kidney function.
Yup, that is what happened to Ashley. UTI pushed it over the edge very quickly and she had to start D much sooner than anticipated.
-
To follow up on what AguynamedKim wrote:
From Renal and Urology News - "Oral Adsorbents, Probiotics an Inexpensive Way to Eliminate Uremic Toxics in CKD Patients"
http://www.renalandurologynews.com/oral-adsorbents-probiotics-an-inexpensive-way-to-eliminate-uremic-toxics-in-ckd-patients/article/234866/
-
My Name is Carol Johnson and I'm at stage 5 Kidney Disease. I was diagnosed with Membranous Glomerapathy. I ran across an article on Renadyl and I ordered it. It has been a life saver for me. I should have been on dialysis three years ago. But since taking Renadyl, my Disease has remained stagnant. My Dr. Informed me whatever I was doing to continue doing it. I was at the point of ammonia Breath. Since Taking Renadyl, I have not had that problem anymore. I usually take three tablets in the morning and then again three in the afternoon. I have had no issues with stomach upset. Actually it has helped me since I take Iron supplements to help with my anemia. I highly recommend taking this probiotic as it has worked for me :clap; :clap; :clap;.
-
So what's the difference between this stuff and normal probiotics?
-
$162 for three bottles at Amazon. NOT on my fixed income.
-
I've been taking Renadyl for about 2 1/2 years now. I was looking for a high potency probiotic to help with digestive issues, and it made sense to take one designed specifically for kidney disease. I can't say I saw any real difference in creatinine or BUN levels after taking it, but it definitely helped my stomach issues. It costs about $50 per month to take as directed, and from my research you will pay that for any probiotic of similar strength. There are many strains of probiotics and Renadyl supposedly uses ones that are more helpful for kidney disease. I know it hasn't hurt my kidney, but it is hard to say whether it has actually helped. I no longer get dehydrated from bouts of diarrhea, so that has probably helped my kidneys. They are a reputable company with good customer service and prompt delivery.
My kidney function has jumped around a bit in the nearly three years since I had my fistula installed, but I have not needed dialysis yet. I am on two transplant lists, with more than 2 years accrued time. Last fall my numbers were dropping for 6 months in a row and went as low as 14% with creatinine at 3.35. I got my nephrologist to allow me to use Procrit to get my hemoglobin a bit higher (monitoring it monthly to keep it in a safe range) and it helped me start a daily exercise regimen. I go to the YMCA each day and do water aerobics in the pool. After several months, my creatinine has dropped to 2.74 (in about that range for 3 months now) and my function has improved to 18%. My BUN has dropped as well. I have also lost weight, which is critical for staying on the transplant list. I am in the process of getting on the list at Toledo so I can transfer my wait time at U. of Michigan and potentially get a transplant this year or early next year. I'm on the list at Madison, but it might be another year or two before I get to the top of their list.
The truth is doctors just don't know why kidney disease progresses faster for some than others, and it is a guessing game as to what helps and what doesn't. I try to do a combination of things and hope for the best. It is critical to control blood pressure, blood sugar, anemia, and urine protein. Beyond that, the things that have helped me most are exercise, weight loss, and controlling my stress level. As for diet, low protein did not work for me. I gained weight and my kidney function declined. When I added protein back my function improved. Others have had better results with a low protein or vegetarian diet, but that doesn't work for me.
I believe each of us is unique, and we need to experiment with things and see what works for us individually. For me, Renadyl has been a part of that approach.
Debbie
-
I have no doubt that taking the product will not harm you. And as it has helped control diarrhea that is a positive improvement.
My problem is a very fixed income. When it comes to taking any supplement or making the utility payment, the utilities win every time.
-
Thank you Tigtank for sharing your success. It's a testament to how important it is to be proactive and in control of your health decisions. Simple lifestyle choices makes all the difference. Hippocrates was quoted as saying "all health and disease begins in the gut". Good quality probiotics and fermented foods contribute to healthy gut flora. Hope you continue to see good results.
-
May I add a tidbiti to that.
A wise old Dentist told me once if your teeth and gums are not health, you are not health.
Inflammation within the gums can contribute to many of health problems. I have just enlisted in a study of this in Dialysis patients. I will post later what I learn.
-
Inflammation within the gums can contribute to many of health problems. I have just enlisted in a study of this in Dialysis patients. I will post later what I learn.
A 100% true. Only after I was scheduled for my dad's kidney receipt did one fine dentist find a huge infection on the point of a root of a tooth. It must have been growing for years as it was on an Xray too from years earlier. But it was overlooked by 2 other radiologists. 2 years in hosp, chemo g...d knows how many ops... If my tooth hadn't broken before the op, I would have lost dad's kidney for sure.
-
I don't understand what it is about this medication as opposed to other probiotics.
My bottle of acidophilus cost me $7 for 60 days, and it seems like it's essentially the same stuff.
-
There is a big difference when you look at strength. The cheaper probiotics are in the millions per capsule. The high potency probiotics are in the billions. Plus Renadyl is a combination of 3 strains instead of only one.
-
This product seems very overpriced to me. I take a probiotic called Multistrain11 by Cyto Matrix and it costs about $45 for 100 capsules. I've taken it for years, with the approval of my neph and have had no issues. I've also never had to take any Prilosec or other stomach protective medicines after transplant and don't have any heartburn problems. I don't recommend taking ANY medication, natural or other, without specific approval by your own nephrologist. Sometimes that may mean presenting him with an article or other research info about the supplement in question. I also take a high potency, good quality fish oil and had to convince him about that too.
-
May I add a tidbiti to that.
A wise old Dentist told me once if your teeth and gums are not health, you are not health.
Inflammation within the gums can contribute to many of health problems. I have just enlisted in a study of this in Dialysis patients. I will post later what I learn.
Hello Charlie, I was told exactly the same by an "old wise dentist" who checked my teeth every six months for a quarter of a century before he retired.
When my ESRF became very obvious, he advised me that every time I have something to eat, I should wait for half an hour before brushing my teeth very carefully and thoroughly and then he added that in his professional opinion that is the only way to keep my teeth as healthy as possible despite my ESRF.
He also mentioned, that ESRF-teeth become very fragile and to combat this, great hygienic care (as mentioned above) must be taken to avoid complicatons.
Best wishes from Kristina. :grouphug;