CBD

[Sally10255]

Hi, has anyone heard any benefits of CBD oil? I did read a bit about it helping with any aches and pains in regards to kidney pain issues. Just wondering thoughts about use for gfr improvement. I don’t know much about any bad sides to CBD. My gfr is low, yet essentially have one good working kidney. The other was damaged due to a sizeable stone or something else. I am cautious on things I take.

[WYOAnne]

No, I have never heard of using CDB oil for kidney issues. I know some have touted the benefits of cdb oil for those suffering from seizures. I would never recommend you take this or anything else not prescribed by your nephrologist. If you are wondering about this, talk it over with your doctor.

[Sally10255 in reply to WYOAnne]

Yes, I would do so.

[Marvin8]

Nephrologists don't know jack about supplements, yet tend to trash them, and if supplements could cure ckd, it would put them out of business=conflict of interests. The supplement industry is completely uncontrolled, doesn't do random, double-blind, placebo controlled studies and spews mostly BS about supplements' curative powers. The pharmaceutical industry sees the supplement industry as a mortal threat and trashes it. The poor CKD patient is totally left to fend for themselves, relying completely on anecdotal evidence for things like fish oil, Vitamin D, baking soda, astragalus and other chinese herbs, turmeric, and a whole host of other supplements that may or may not have benefit. There's relatively little money to made from them, so very little research is done.

[WYOAnne in reply to Marvin8]

I strongly disagree with you Marvin! Maybe you do not see the "right" nephrologist? I am 18 years post transplant and my nephrologist actually has me taking 6 different "over-the-counter" supplements.

It's very important if in CKD or like myself, living well after a kidney transplant to have a primary doctor and a nephrologist that you trust and also one that will believe what you tell them. I have been an advocate for myself, so I have both doctors that work WITH ME.

I have never seen a post from you before, are you in CKD? Let us know how you are doing....

And maybe for you, you need to find a new nephrologist?

Take care.

[Sally10255 in reply to WYOAnne]

Hi, could you tell me what you take? . Reason I asked my kidney doctor doesn’t believe in taking anything unless body is in a deficit. I don’t take any vitamins because of excessive potassium, phosphorus. I used to do some protein powders, not anymore. I am extremely active for my age..62..ex, today I did over 20 miles cardio today. My bp is quite awesome, which is extremely important since one kidney is a blip, the other one great. Drink over a gallon of water a day. Just real curious as to what supplements have proof of proving kidney function/gfr.

[Marvin8 in reply to WYOAnne]

Good reply, Anne. Perhaps I do indeed need to find a different nephro, even though he has a stellar reputation here in Chicago. He was very nice the first visit a little over a year ago, but since my GFR was just a few points lower a year later, he just didn't seem to want to spend much time talking about supplements, saying there's no real proof that any of them work. My biggest problem is that I'm losing muscle mass because I'm scared to eat more than 50 grams of protein a day, and what happens is that when I work out, my muscles seem to be catabolizing and I'm losing weight. FYI, I'll be 60 next week, my GFR when diagnosed was around 59 and now it's 55-58 depending on fasting and hydration. What's truly bizarre is that when I found some old blood work from 20 years ago, my creatinine levels weren't a whole lot lower...1.15 versus 1.35 now. Doctor never said anything other than "drink lots of water", which I never did. Chronic semi-dehydration plus a few kidney stones probably did me in. Bottom line is that this is one helluva frustrating disease. Great to hear that you're doing so well so long after a transplant. You must have gotten a real young one. Btw, the vast majority of studies and therapies for CKD revolve around folks on dialysis. Very little research money seems to be spent on folks with stages 1-4. Sorry for rambling. Regards

[WYOAnne in reply to Marvin8]

Be glad you were diagnosed early.....my creatinine was 1.5 and was considered already in stage 3. My only symptom was high blood pressure and that's what had the doctors' start to do other tests and found I had ckd. I was diagnosed in 1991. Since those days there are a lot of information out there on "helping" your kidneys - diet (Davita diet), medications, etc. Although for me, I was diagnosed with glomerulonephritis which was causing my kidneys to scar up inside. Now, my native kidneys are the size of "ping-pong balls." Not sure if my ckd could have been slowed down any or not. For me, I am living well and happy 18 years after having a cadaver kidney transplant. My donor was a 16 year old boy that was killed in a car accident. His Mom sent me a picture just a month after my transplant. I can look at it daily and remember where my wonderful "gift of life" came from.

Find a new nephrologist that will help you maintain your present kidney function. Reputation isn't everything! We just moved to WY about 18 months ago, so was really important to find a new nephrologist asap. I found a great new primary doctor. You can always ask your primary doctor or nurse.....that's how I found mine. My nephrologist is very caring, answers all of my questions - no matter how dumb, and most importantly believes me when I tell him something!

Take care and let me know how you are doing!

[WYOAnne]

I do have seasonal allergies, so take FLUTICASONE NASAL SPRAY & ZYZAL

Has me take a MULTI-VITAMIN (you can find with low or no potassium), VITAMIN D-3 2000IU, VITAMIN B-12 1,000IU, FIBERCON TABS, ASPIRIN 81MG (baby aspirin).

I am 18 years post transplant, so not sure if helps kidney function. He started me on vitamins to stay healthy. My immunosuppressants make me more susceptible to illness, whatever is going around. I am 68 so started me on the Vit D and baby aspirin years ago to help prevent stroke and dementia. He started me on B-12 because I have an entrapped nerve in my transplant incision that causes pain. I have great kidney function now, and doctor said that none of my supplements would harm that.

I could never drink as much water as you do, a gallon a day. For me, I would retain fluid and would need to take lasix, a water pill. Your function must still be pretty good, because before my transplant I was taking lasix every other day and had to limit my fluids.

Hope you continue to do well!

[Sally10255 in reply to WYOAnne]

Thank you for Info. My gfr was down and after testing and then pain had 6 mm kidney stone. I ended up passing the stone, but had a stent for a bit. Exercise, water is I think helping to keep bp down which is crucial. It runs in the low side which is great for the one kidney. Thank you for your response.

[Marvin8 in reply to WYOAnne]

Hi Anne, I'm curious to know what your GFR is after all these years with the transplant. My biggest fear is dialysis.

[WYOAnne in reply to Marvin8]

I have no idea what my GFR is. Every 3 months I have renal labs done - blood along with urine. My nephrologist is only looking at creatinine, bun, potassium, rbc, wbc and looking at my urine for protein, blood, wbc and infection. I think if my creatinine changed he would investigate further. My creatinine has been a steady 0.9 (normal 0.3 - 1.3 at my lab). There have been a few times in the last 18 years that it has changed. If it increases by 0.3 points or more, than he gets worried and does additional testing. If I remember right, there have only been 3 times in 18 years that I had to have a kidney biopsy due to creatinine changes. Yes, my kidney is working like a champ!

When I was in kidney failure I did start dialysis. But I started end of August and had my transplant in mid October. So, not even 2 months. Some transplant centers do a transplant before you get sick enough for a transplant. I had my transplant at U of WI in Madison, WI. I know U of Chicago has a good transplant reputation also.

[Marvin8 in reply to WYOAnne]

Most deeply appreciate all the background info. Definitely helps. Yes indeed, your kidney IS working like a champ...or did you get two new ones?

[WYOAnne in reply to Marvin8]

Just one!

[itzmich in reply to WYOAnne]

Kidney failure? I thought your kidneys were working like a champ. I'm confused, if the creatine levels were normal? How long were you in the good stage before failure?

[WYOAnne in reply to itzmich]

As it was explained to me, a kidney transplant is NOT a cure for kidney disease, it is a treatment. Yes, my transplant is working like a champ, but I am still considered to have ckd. My creatinine continues to be 0.9 - 1.0

[itzmich in reply to WYOAnne]

Sorry I didnt realize you had a transplant. Wishing you all the best.

[PopcornLover1971]

So HAS anyone heard of any benefits or detriments I’m taking CBDoil and/or THC oil when dealing with CKD?

Anyone speak to their nephrologist about this?

[mercevo2]

CBD oil on its own will have little or no effect, but proper cannabis oil with THC can....I have been using it for about 5 months and my GFR has improved from 30 to 33.....CBD only comes from the Hemp plant, which although is a sister plant to Cannabis is not the same and contains no THC, .