Monday, March 30, 2015

Black Raspberry Powder

Since my surgery in 2013, I have had problems with bowel movements – everything from frequency size, color, timing and consistency.  Prior to surgery, I had no bowel issues, basically one bowel movement a day every day.   My issues post-surgery seem to derive from having a shorter small intestine and not carcinoid syndrome, which causes diarrhea in a lot of people.  My doctor has had several suggestions over time such as eating more soluble fiber, CREON (a pancreatic enzyme to help digestion), taking benefiber daily and Imodium as needed.  Some of these helped marginally but my bowels never returned close to “normal” like they were before surgery.Over the years I had heard about people using black raspberry powder (BRP) for relief of diarrhea due to carcinoid syndrome.  In my opinion, Lucy Wiley, another blogger, is the expert on BRP.  You can find links to her blog describing how to use it and its benefits here:

http://lucysnoidblog.blogspot.com/2011/12/black-raspberry-powder-video-thanks-to.html?q=brp

http://lucysnoidblog.blogspot.com/2012/01/brp-diary-what-i-learned-today-just.html?q=brp

http://lucysnoidblog.blogspot.com/2012/02/extract-black-raspberry-goes-portable.html?q=brp

Prior to reading the carcinoid message boards I had never heard of a black raspberry much less black raspberry powder.  BRP is a powder made from dehydrated black raspberries.  Dr. Woltering at Louisiana State University is a strong proponent of BRP and believes that it inhibits tumor angiogenesis.  Tumor angiogenesis is the sprouting of new blood vessels that enable tumors to grow.  There has been a lot of research done on BRP, mostly in labs and on mice, but no human clinical trials that I know of.  Dr. Woltering’s paper on BRP and its angiogenesis properties can be found here:

http://www.ochsner.org/content/misc_files/black_raspberry_paper.pdf

After years of hearing about BRP and its benefits, I decided to try it myself in late February.  I looked into the suppliers of BRP and found Berrihealth (www.berrihealth.com) .  Lucy Wiley is also using this supplier for the BRP. The only other source I have located is Nutri-Fruit that can be bought here: 

http://www.vitacost.com/nutri-fruit-powder-black-raspberry-5-oz

Dr. Woltering suggests the following protocol:1 gram of BRP per kilogram of body weight. 1 quart of lukewarm water. Mix in the BRP and water.  Stir and refrigerate overnight.  The next morning, put the liquid through a strainer to eliminate the residue and seeds. Drink the quart of BRP throughout the day until finished.  I also follow Lucy Wiley’s very good suggestion of storing the BRP mixture in two Snapple bottles. 
Thanks to Lucy for this idea

In order to follow this protocol daily, one needs a lot of BRP.  The best way to get a large quantity of BRP from Berrihealth is to go on their website and contact them by email or phone. You must notify them you are a NET patient to order the BRP in bulk. 

The contact information is here:

http://www.berrihealth.com/community/contact

They sell a 1,500 gram 3-pack of BRP for a substantial discount per gram.  Depending on how much you weigh and if you are following the higher dose protocol above, the cost could be around $8 a day.  When you buy a bulk package from Berrihealth, 5% of the proceeds go to carcinoid cancer research.  Here is a picture of one of the BRP bags:

The dosing for Dr. Woltering’s protocol is as follows:


Body Weight in Pounds =
Body Weight in Kilograms (kg)
BRP in grams (gr) daily
125
57
57
150
68
68
175
80
80
200
91
91
225
102
102

As you can see above, the dose is quite high for this protocol.  The bag of freeze dried BRP says a serving size of 2 teaspoons is 8 grams.  I don’t have a gram scale so I translated the doses into tablespoons and that is how I measure out the BRP. A tablespoon is equal to 12 grams.


Body Weight in Pounds
BRP in grams (gr) daily
Tablespoons
125
57
4.8
150
68
5.7
175
80
6.7
200
91
7.6
225
102
8.5

When I received the BRP, I started using 2 tablespoons (24 grams) just to see how my body would react.  I weigh about 150 pounds, so the Woltering protocol would have me using close to 6 tablespoons daily.  I noticed a positive change in my bowel movements within 24 hours and it was even better after a few days.  I was altering between 2 and 3 tablespoons per day in the quart of water. My bowel movements were much less frequent (1-2x per day), much less voluminous and the color was a normal brown instead of yellowish.  I was amazed at the difference! 

The BRP has a mild taste of berries but it is quite thick when mixed and steeped overnight.  I have been adding flavored club sodas, cranberry juice, herbal teas and diet ginger ale to enhance the taste and make it less dense. My bowels were doing quite well but I was having trouble drinking as much as 4 cups a day of the mixture, especially when I was mixing in the tea, seltzer or other liquids.  I lowered the water to 3 cups and used 1 tablespoon per cup of water or 36 grams a day.  At 36 grams a day, the cost is about $5 a day, rather than $8 or more for the higher dose.

So, after about a month of playing with BRP and dosing, I’ve had better bowel behavior. The downside is that I have added a few pounds to my weight.  Better bowel behavior was my primary goal and BRP has exceeded my expectations.  At this point, I’ll stick to the dose of about 36 grams a day mixed with 3 cups of water, hoping that it can also help with slowing my tumor growth. 


I would recommend you try BRP for any of the above described bowel issues.  It could make a big difference in your quality of life. You might even live longer!




10 comments:

  1. Thank you, Beth, for providing this valuable information. Just a slight difference: I do not use teaspoons or tablespoons to measure the BRP. I weigh each dose with a gram scale and try for 50g per day, which is a lot more than a tablespoon of the powder. I have been able to adjust my dose to 20g per day and still have the benefits of the BRP. Thank you for helping me get the word out and for referencing my blog. I look forward to seeing more from you about the little-known aspects of our rare disease. Lucy Wiley DX 2006 Mid-gut NET with distant metastasis.

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  2. I know using tablespoons is not quite as accurate as a gram scale but I use 1 tablespoon per cup of water and drink 3 cups a day. That is about 36 grams - not as much as your 50 but it still does the trick! Keep up the good blogging - I always value your opinion.

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  3. Kudos to you and to Lucy for this valuable info. The topic of using the BRP is like Ground Hog Day....keeps coming up with same questions...over and over...so I will now refer people to Lucy's blog and to yours. thanks for good work.

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    Replies
    1. Glad you like the information. I hope it helps you and others with any carcinoid related bowel issues.

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  4. Very valuable info for all with our disease. Interesting that it may be working for your short bowel. Thanks,
    Cy

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  5. Thank you, thank you, thank you for providing such great information. I've been on Sando LAR for 3 months and I just never know from one month to the next what my bowel movements are going to be like so I've been looking for something to help control those months where they're loose and frequent. I've ordered one bag of the freeze dried from Berri Health to see how my body will handle it. Looking forward to great results. Again thank you Beth and Lucy. Couldn't figure out how to sign off so had to choose anonymous - Thanks again - Bonnie Trenary

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  6. I wonder why they want the powder to steep instead of just stirring into liquid and drinking the whole thing...

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  7. The binomial name of black raspberry is Rubus occidentalis, which is belongs to the species of Rubus native to eastern North America. Other names occasionally used include black cap raspberry, black caps, scotch cap, black raspberry extract

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