Polycystic Kidney Disease (PKD) Support Group
Polycystic kidney disease (PKD) is a progressive, genetic disorder of the kidneys. It occurs in humans and other organisms. PKD is characterised by the presence of multiple cysts (polycystic) in both kidneys. The disease can also damage the liver, pancreas and rarely the heart and brain.
Just.a Quick update. The herbal meds that my brother and I have been taking, continue to be effective. He is beginning 3 years, I am beginning my second year. He was being worked up for a transplant at Vanderbilt research hospital and that has been cancelled. I was taking a nose dive with creatinine rising rapidly and GFR declining. We are both considered stable at this point in time. Vanderbilt hospital has taken a bottle of the herbal meds and will begin the lengthy process of research. They have never seen anyone so close to a transplant, do a reverse turn around! I actually have a new kidney doctor, he is very, very interested in these drops! He has scheduled me for another ultrasound as he wants to take a look at my kidneys and what the cysts are doing, if anything. I will keep you all posted about this! I am beginning to have very high hops for these herbal meds, but want to stress that they have only worked for my brother and myself, that I know of anyway. There are other people in our group that are taking them as well and hope to hear something from them soon, if the results are good then it's my belief that we are on to something very, very interesting! The big issue with herbal meds is the lack of research, however I might state that I almost died from taking Lipitor!!!! I wonder why there are so many law suits out there and it still remains on the market, just one of many, many FDA approved drugs! Just my humble opinion! When push came to shove, I shoved back! Will continue to keep you all posted!
Lots of love,
Norma ...
Lots of love,
Norma ...
I have had a long standing theory that there are toxins (bacterial, fungal and viral) in those cysts... in our kidneys and other organs... among other things, that no one seems to do any testing on. It just makes me wonder, wonder, wonder.
DO keep us posted. And we will all keep our heads about us in the meanwhile. Here's to HEALTH, wisdom and life!
Heather
thanks for sharing your good news and let's hope to hear from others who are taking this supplement.
I hope we all realize that getting funding for any supplement, herbal product etc. is very difficult due not only from opposition from the well funded pharmaceutical industry but from the FDA who are very much in their pockets. I hope Vanderbilt will fight back, as you have.
in the meantime, let others be warned of possible risks but those who accept them should know the name of the product and where to get it. they also should keep their med team aware of what they are doing.
Another thing that crosses my mind is how long will they work?? But as in any other medicine, time will tell. I feel a grave responsibility in telling this group of people about these meds and want to make sure that everyone does it right!! I have not changed my life style in any way since taking these meds, if anything I do less because I suffer from psoriatic arthritis unbelievably!!! I am just living my life the best that I can, and trying to help others ... I am always around if anyone has any questions.
Lots of love,
Norma ...
And certainly keep us posted on any more information you find out.
I've been taking sublingual methyl B12 supplements to help with fatigue, anxiety, and muscle/joint aches. For the first time in my life I feel like a human being instead of being in a fog all the time and constantly aching (aside from pregnancy stuff). Plus drinking more water. I'm amazed how much it has helped. Of course, it may not before everyone, but considering the low chance of overdose with most B vitamins it was worth a try. I had to take vitamins for the pregnancy anyway so might as well pick a good one.
do you get the drops from youngliving.com? Is that the only source? I would like to buy them at a shop over the counter, rather than online, if possible.
Clive
Lots of love,
Norma ...
Lisa, these oils are not something you would take if you are young and healthy. Which you are. It's my opinion and only mine that you are too young to begin taking these oils now, I don't think that they would benefit you at this stage of PKD. Are you losing kidney function or is your creatinine rising? Remember how old I am. :(. Plus everything was going on me and my brother, he was 60 when his kidneys failed, but he is fine now and holding his own just as I am. You can do what you want, but I wouldn't do it now, if I were you. Who knows what's coming in the future with cures for PKD, you have time on your side, I don't! Love you sweetie!
The name of the product was K & B (which stands for Kidney and Bladder) through Young Living. I am trying to find out at this time, if some other companies make a similar combination.
Beyond that... I have hope for my daughter.
Venetina