You're fortunate to not have any symptoms of the disease yet.

From what I've been reading about in news, we're probably not too far off from creating artificial kidneys through mechanical, or stem cell methods. I'm optimistic about this.

I have tried the K&B drops also with no results..My creatinine level was 1.64 and went to 1.73..I decided to stop taking them..

What medication are you on for your hypertension ? You seem to have an enviable among of vigor and stamina to be taking blood pressure medication. I have a stable creatinine at 1.2 but I feel tired a lot which I believe is from my Blood pressure medicine verapamil.

for hypertension I take 10mg of fosinopril and 12.5 mg of hydrochlorothiazide once per day. if your doctor is not already doing so have him/her check your blood iron levels and parathyroid levels . my hemoglobin was getting low so I was but on 300mg of ferrous sulfate which is just an iron pill. also my parathyroid levels were high which is common with pkd so im now on rocaltol which is the activated form of vitamin d. it is available by prescription only. lack of vit. d raises the parathyroid level . over the counter vit d supplements are useless to people with pkd because our damaged kidneys cant process it. im guessing its the iron pills and rocaltrol that's keeping my energy level up. as for the bio artificial kidneys I read that clinical trials are set to begin as early as 2017 so maybe there is hope for us .

I just wanted to sympathise with you. My GFR was stable at around 22 for about a year and a half but recently it has gone from 18 to 17 then 16 last week.

I too have no real symptoms. I do feel a little tired in afternoons but other than that I'm reasonably ok. I haven't taken the K & B because I couldn't find it sold in UK.

Take care and God bless you.

Clive

Sorry I haven't been around lately but ended up in the hospital again. I am so sorry that the drops haven't been effective for you, maybe I was just wishing too hard. Please forgive me. I have PKD type II and have wondered if that had any bearing on it. Again, I am so sorry, guess I should have kept my mouth shut! Love, Norma ..

Bobby and hiwaypilot, I have been researching these oils I take until the cows come home and cannot find a reason they are not being effective for you both, initially I thought it had something to do with the two different types of PKD, I and II. But have found many people with type I that are taking these drops and being successful. One thing is clear, everyone is different with PKD as we already know, but the one thing that stands out in all that I have talked with is consistenancy! Everyone appears to be taking 3, 1/2 droppers full once a day. The only ones that are taking more are the people that did not get good results in the first 4 months. Have either of you taken them for 4 full months? The young living oil people guarantee their products so perhaps it would be beneficial for you guys to speak with them personally. I have had to be hospitalized twice within the past month, I was very sick and thought for sure my kidneys would fail due to the general anesthia I had to have and someone? Was putting Torodol in my IV, which is perhaps the worst anti-inflammatory drug on the market! I just knew I was done for! My creatinine had risen to 1.9 which is an all time high for me. I began to cry. After all the years I had worked at keeping my kidney function in a normal range, it was all flushed down the toilet now. Bless his heart my husband Jim, ran home and got the drops and began giving them to me. Within 4 days it was down to 1.6 and presently at home now, it is 1.4, well within a normal range for me. These drops work, I am convinced of it. Please don't give up yet, try the full four months, take them at the same time every day and only then if the results are not improved, increase your dosage. Do it like clock work! Any questions? Fire away!

Lots of love, Norma ...

norma , thanks for all the info. im very open to any ideas on alternative treatments for pkd considering that big pharma has nothing for us. im not giving up on the herbal drops just yet as I plan to keep using them for at least another few months. I have been using them for 2 months in total now taking two doses per day. I am now using them only once per day to see if that makes a difference. my next appt. with my neph is in jan. 2014 so I will keep u posted. also i have noticed on the pkd foundation website that the clinical trial for triptolide was terminated but they don't give a reason. if anyone knows why maybe they can post it here. take care, dave.

OMG!! I am very interested in knowing the name of these drops. I have PKD and I'm stable but my sister's creatinine is 3.55 and will have the fitchula put in her arm on Friday. Please give me the name.

I can't tell you how sorry I am that I didn't see your posting! I have been in the hospital. Anyway, the name of the herbal meds are Young Living K & B essential oils! Google them and you will see how to order them. They have been a God send to me and my brother and many others. However, remember that PKD is different in everyone, no exceptions and I cannot guarantee anything. God love you and your sister!

Lots of love,
Norma ...

With a hefty price of $39.14 per 1.8 ounce bottle (not sure if that includes shipping) this really seems like a scam.

I can't find a reason why these would work for anyone. Be very wary of advice you get online.

I would say skip the drops and spend the hundreds of dollars it would take to use these on healthy food or anything that will help you live a healthier, happier, life.

VAPKD, I am sorry that you feel that way. I have never claimed that they work for everyone. Just as PKD is so very different in everyone with this disease, it's very possible that these drops would not work for everyone with PKD. They have worked for me in every way possible and my brother, that is all I am saying. Thanks for your valuable input.

Lots of love,
Norma ...

Thank you Norma, I ordered them and I should receive them in about a week. I'm so excited to give it to her. I love my sister with all my heart and although I have PKD too and wish I could donate the kidney but can't I really wish that she doesn't have to go through dialysis. Thanks..