Bee Propolis - SCD

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dfdavedf
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Date Joined Jan 2010
Total Posts : 1103
   Posted 6/10/2011 10:04 PM (GMT -6)   
You thought I forgot about you..but noooo
 
 
Letter # 1 from BTVC yahoo group
 
Esther,

I have no experience with either of these. What I do know is that Elaine strongly recommended AGAINST having the pollen in the honey, because, although it may be good for people without gut issues, it can trigger immune issues in people with those gut issues.

I can say that when I was initially on SCD, I had been using a local honey to help with allergies, and it seemed to work. After I started SCD, I had to quit using the local honey and go to filtered honey, as recommended, because my system was hyper-reacting to the local honey.

I am pleased to report that I now have fewer allergy issues than I once did (go SCD!). I have been able to resume using a local honey (I like supporting local beekeepers!). 

I would therefore treat any of these, if you decide to try it, with extreme caution, and be prepared to yank them at once.


 
 
Letter # 2 from same source
 
 
1. Is bee propolis legal? I know the pollen is not, but I didn't see anything about bee propolis.

"The properties of the propolis depend on the exact sources used by each individual hive; therefore any potential medicinal properties that may be present in one hive's propolis may be absent from another's, and the distributors of propolis products cannot control such factors. This may account for the many and varied claims regarding medicinal properties, and the difficulty in replicating previous scientific studies investigating these claims. Even propolis samples taken from within a single colony can vary, making controlled clinical tests difficult, and the results of any given study cannot be reliably extrapolated to propolis samples from other areas. "

I think I'd avoid it. I think you can get antioxidents from a less-varied source.
 
 
Bottom line, is it sure appears to be illegal and for sure I would not be taking it unless I was in full remmission and highly stable
 
Take Care and let me know whazz up
 
 
Pentasa (1,500 per day for the last 6 months), Vit D and B complex, fish oil and SCD vit. Entocort (6 mg and hoping to get to 3 next doc visit). SCD since Nov 2010. Amitriptyline for sleeping
Feeling good, almost every day!

pb4
Elite Member


Date Joined Feb 2004
Total Posts : 19561
   Posted 6/11/2011 12:21 AM (GMT -6)   
Well I'm sure glad that I don't do the SCD because my experiances with bee propolis has been great considering I was such a severe CDer...and my GI thinks it's a great idea too since it helps me as much as it does and he told me to take it indefinitely, also that it's 100% non-toxic (it doesn't build up in your system).

But besides the bee propolis and the other things listed in my sig that I take, I eat a completly healthy diet, no preservatives, regined sugar *use stevia*, fast-foods, processed foods and my diet along with the combination of what's listed in my sib (which also includes vitamin D for the last 2 yrs now) I am doing better than I ever have...still not complete remission (main issues are still some frequency and sudden urges) but much better than ever.

One more thing, I was very very severe when I started on bee propolis, so it's obvious that it is what helps me since I noticed improvements within 2 days.
bee propolis caps 500mg one cap twice/day
omegas 369 caps one cap twice/day
probiotics 10 billion cfu once/day
vitamins C-calcium ascorbate (easy on the gut) and vitamin A each once/day
Prodiem fibre supplement one cap before bed
I've also altered my diet (no junky stuff at all, processed, fast-foods, refined sugars, ect) and exercise regularly.
I went from 30+ bloody BM's/day with lots of lower back pain to an average of 5/day no bleeding no back pain and completely formed stools, still have severe urgency issues.
~~~~~~~~My bum is broken....there's a big crack down the middle of it! LOL :)~~~~~~~~

dfdavedf
Veteran Member


Date Joined Jan 2010
Total Posts : 1103
   Posted 6/11/2011 6:37 AM (GMT -6)   
Of course the only thing that is important is finding something that works for you. It is great that you found bee propolis. And it is great that you tell people here about it. In fact if I was not doing SCD based on your input i would give it a go.
 
As we have all said, we need to figure out what works for each of us and there is no "one size fits all. "
 
SCD is working for me, so I will play by all of the SCD rules. But that is just me.
 
Thank you for sharing your great experience
 
Dave
Pentasa (1,500 per day for the last 6 months), Vit D and B complex, fish oil and SCD vit. Entocort (6 mg and hoping to get to 3 next doc visit). SCD since Nov 2010. Amitriptyline for sleeping
Feeling good, almost every day!

pb4
Elite Member


Date Joined Feb 2004
Total Posts : 19561
   Posted 6/11/2011 8:13 AM (GMT -6)   
I totally agree with you...key is to find what works and stick with it in the hopes that it will lead to remission (or at least a somewhat more managable life)....I think all we really have is eachother to guide us through this horrid disease. Doctors (unless they have the disease as well) really have not clue so for us it's pretty much all tiral and error.

The time and money we spend trying to feel human goes un-noticed I'm sure by docs and such but it's worth the sacrifieces we all have to make on many levels to try and get our lives back from IBD.


I'm so glad the SCD works for you, and of course I encourage people to keep trying until they find what works for them since it is such an individual disease...even my GI said that if banging your head against the wall 3 times makes your CD better then go for it, so in essence it really doesn't matter what it is (cuz there are some interesting things out there that people do to feel better) so long as you're able to find something.
bee propolis caps 500mg one cap twice/day
omegas 369 caps one cap twice/day
probiotics 10 billion cfu once/day
vitamins C-calcium ascorbate (easy on the gut) and vitamin A each once/day
Prodiem fibre supplement one cap before bed
I've also altered my diet (no junky stuff at all, processed, fast-foods, refined sugars, ect) and exercise regularly.
I went from 30+ bloody BM's/day with lots of lower back pain to an average of 5/day no bleeding no back pain and completely formed stools, still have severe urgency issues.
~~~~~~~~My bum is broken....there's a big crack down the middle of it! LOL :)~~~~~~~~

pmedic
Veteran Member


Date Joined Nov 2009
Total Posts : 1617
   Posted 6/11/2011 3:51 PM (GMT -6)   
dfdavedf- You are awesome! I never doubted you for a second! Thanks for that information! I am trying to find a happy medium as Pb4 suggests. The bee propolis help me with my bleeding issues and the SCD also helps so I am trying to do both as long as possible. Thanks for going to the trouble to find out!
Dx:Ulcerative Colitis March 2008
Dx: Crohns May 2008

No surgeries yet but I am desperately trying to keep my colon.
8 blood transfusions, SVT due to low H&H, Anxiety during new medication injections due to past reactions.
Been through MANY medications with mixed results
Currently on Cimzia, Lialda, Ambien (prn), xanax(prn) Bee Propolis 500mg twice per day.

Roni
Veteran Member


Date Joined May 2003
Total Posts : 2480
   Posted 6/11/2011 4:08 PM (GMT -6)   
I am a happy medium person too. I go through stages though; when I'm really really sick, I take drastic measures and stick to a particular diet; when I feel a little better, I can try other foods and aspects of other diets.

Experts say we should eat according to symptoms and how we feel, so that is what I do. Unfortunately for pretty much all of my life with CD, I've had a modified diet, but I want freedom to eat with no more fear.

For me, this fear of certain foods is getting old.

dfdavedf
Veteran Member


Date Joined Jan 2010
Total Posts : 1103
   Posted 6/12/2011 8:48 AM (GMT -6)   
Hey Roni
I think I have a different perspective, that has helped me.
 
When I quite smoking I used many tricks and techniques but one of the big ones was I never let myself think about having "just one". When I was really wanting a smoke I would force myself to ask "do i want to start smoking full time again". The truth is one is likly to lead to full time for me, so it is all or nothing.
I approach food choice the same way now. I never say to mayself "i bet I could have just one", I say "do I want to feel sick again". I am sure for some they can find the balance and can have a bit of the trigger foods without getting sick. For me it is easier to just never have any, just like smoking.
At this point in my life I am so sick of being sick, that no food even comes close to being worth it and therefore it is not a burden as there really is no decsion for me,
Dave
Pentasa (1,500 per day for the last 6 months), Vit D and B complex, fish oil and SCD vit. Entocort (6 mg and hoping to get to 3 next doc visit). SCD since Nov 2010. Amitriptyline for sleeping
Feeling good, almost every day!

Octobergirl
Regular Member


Date Joined Aug 2009
Total Posts : 377
   Posted 6/14/2011 3:24 PM (GMT -6)   
Hey, question for pb4 or whomever else has found propolis to work for them,

Do you take your propolis on an empty stomach or with meals? Does it matter?

Have you noticed a difference in the brands you use?

pb4
Elite Member


Date Joined Feb 2004
Total Posts : 19561
   Posted 6/14/2011 7:00 PM (GMT -6)   
Hi Octobergirl,

When I first started out taking BP I used the liquid form from my local health food store, it tasted nasty but was worth it cuz I was in quite a severe flare with 30+ BM's daily and lots of blood...I noticed benefit by the next day (bleeding stopped all together and BM's started cutting down to about 1/2 what I was going. After about 3 months I switched from the liquid form the the 500mg caps they sell online at puritans pride and continue to have sucesse with it...just make sure you're not pregnant or allergic to bees/bee products. Good luck!
bee propolis caps 500mg one cap twice/day
omegas 369 caps one cap twice/day
probiotics 10 billion cfu once/day
vitamins C-calcium ascorbate (easy on the gut) and vitamin A each once/day
Prodiem fibre supplement one cap before bed
I've also altered my diet (no junky stuff at all, processed, fast-foods, refined sugars, ect) and exercise regularly.
I went from 30+ bloody BM's/day with lots of lower back pain to an average of 5/day no bleeding no back pain and completely formed stools, still have severe urgency issues.
~~~~~~~~My bum is broken....there's a big crack down the middle of it! LOL :)~~~~~~~~

Roni
Veteran Member


Date Joined May 2003
Total Posts : 2480
   Posted 6/14/2011 7:08 PM (GMT -6)   
That's funny Dave, cause when I quit smoking about 10 years ago, I let myself have the odd ciggy for a few weeks, until I was comfortable giving them up completely.

I find it hard to give something up 100%; I prefer 95%—just for a little while. lol

dfdavedf
Veteran Member


Date Joined Jan 2010
Total Posts : 1103
   Posted 6/14/2011 7:26 PM (GMT -6)   
Hey  Roni
As usual you da man!
 
If I had the strength of personality I might have had a ciggy every once in a long time, or a piece of chocolate once a year, but for some of us weak folks, it's easier to do this all or nothing thing.
 
Cheers
dave
 
 
Pentasa (1,500 per day for the last 6 months), Vit D and B complex, fish oil and SCD vit. Entocort (6 mg and hoping to get to 3 next doc visit). SCD since Nov 2010. Amitriptyline for sleeping
Feeling good, almost every day!

Octobergirl
Regular Member


Date Joined Aug 2009
Total Posts : 377
   Posted 6/15/2011 8:48 AM (GMT -6)   
Hi pb4,

Thanks for the tips. I started the bee propolis almost a month ago. I think it is helping a bit, but I'm also on prednisone so I don't think I'll really be able to tell until I'm off.

Do you take yours with meals or on an empty stomach?

I'm not pregnant, but hope to be some day. I did a little reading up on it, and there didn't seem to be any studies on bee proplis and pregnancy. Do you know of any that suggest that you really shouldn't be on it while pregnant?

Thanks!

pb4
Elite Member


Date Joined Feb 2004
Total Posts : 19561
   Posted 6/15/2011 10:56 AM (GMT -6)   
Sorry Octobergirl, I forgot to address your Q about with meals or not. I take one with/after I have supper and the other one before bed so it doesn't seem to make any difference with me if I take it with meals or not.

Yeah, if you're on pred when you started it then it may be harder to know if it's helping or not (hoping it is though).

I don't know why on the label it says to avoid if pregnant, maybe just a precaution due to the fact that they don't have enough research done on preggos OR maybe because of the fact that with babies in general you're suppose to avoid giving them honey (and because BP is a bee product) the warning is to ensure that pregnant women should avoid any and all bee products due to the sensitivities that babies have and are vulnerable to bee products (so just a precaution).

Good luck and I hope you find full remission for a very long time.
bee propolis caps 500mg one cap twice/day
omegas 369 caps one cap twice/day
probiotics 10 billion cfu once/day
vitamins C-calcium ascorbate (easy on the gut) and vitamin A each once/day
Prodiem fibre supplement one cap before bed
I've also altered my diet (no junky stuff at all, processed, fast-foods, refined sugars, ect) and exercise regularly.
I went from 30+ bloody BM's/day with lots of lower back pain to an average of 5/day no bleeding no back pain and completely formed stools, still have severe urgency issues.
~~~~~~~~My bum is broken....there's a big crack down the middle of it! LOL :)~~~~~~~~

Octobergirl
Regular Member


Date Joined Aug 2009
Total Posts : 377
   Posted 6/15/2011 12:29 PM (GMT -6)   
Thanks, pb4, you've been very helpful. I read about your taking bee propolis when I first got sick, but I've just started taking it. I'm glad it's helped you out so much, and I hope it does the same for me. I appreciate your help! :)

Burli
Veteran Member


Date Joined May 2003
Total Posts : 1251
   Posted 2/17/2015 9:46 AM (GMT -6)   
pb4 - do you still use bee propolis as it's not listed in your signature anymore?


Completely unrelated to above question and I only address SCD here because it is in the post title:

Please don't go by testimonials when trying to resolve your UC symptoms. Always fact check.

My testimonial is SCD did not help my UC at all and I followed it to the letter yet declined to the point of ending up hospitalized. Other, tailored diets and supplements have never prevented me from having flares nor stopped my flares. Not saying don't try diet modification; I continue to modify my diet to this day in order to eat healthier and help any symptoms I may have.

Here is what CCFA states about
Diet and Nutrition:

"...Is IBD caused by allergy to food?

No. Although some people do have allergic reactions to certain foods, neither Crohn's disease nor ulcerative colitis is related to food allergy. People with IBD may think they are allergic to foods because they associate the symptoms of IBD with eating.

Do any specific foods worsen the inflammation of IBD?

No. Although certain foods may aggravate symptoms of these diseases, there is no evidence that the inflammation of the intestine is directly affected. Obviously, any contaminated food that leads to food poisoning or dysentery will aggravate IBD.

Is there a special diet for people with IBD?

There is no one single diet or eating plan that will do the trick for everyone with IBD. Dietary recommendations must be individualized. They should be tailored just for you -- depending on which disease you have and what part of your intestine is affected. Furthermore, these diseases are not static; they change over time, and eating patterns should reflect those changes. The key point is to strive for a well-balanced, healthy diet. Healthy eating habits, of course, are desirable for everyone but they're especially important for people with IBD.

Often, patients have questions regarding The Specific Carbohydrate Diet ™ (SCD), popularized by Elaine Gottschall, M.S., author of Breaking the Vicious Cycle. At this time, the SCD is supported only by patient testimonials, not by systematic studies. With diseases like ulcerative colitis and Crohn's disease, the only way to see if any treatment has widespread value is by appropriate, rigorous testing. The diet itself is not particularly unbalanced, but many patients find it particularly onerous to maintain. Decreasing poorly digestible carbohydrates may decrease symptoms of gas, bloat, cramps, and diarrhea in patients with IBD, but that is not the same thing as decreasing the inflammation, or affecting the disease process. Unlike the gluten-free diet for celiac sprue, which has a well-researched basis, and well-demonstrated track record for affecting the underlying mechanisms at work in the disease process, the SCD does not. Bottom line: it may be worth a try (there are plenty of other diets being touted in the marketplace), but do not abandon your conventional treatment, and keep in touch with your doctor..."
Male: born '66, diag. hypoglycemic '70; epilepsy '82, UC '84, lost hearing one ear in '04, Remicade (1/10weeks), Imuran 50 mg/day, Apriso, oxycodone - pain; Xanax - simple partial seizures; Carbatrol X - grand mal seizures

pb4
Elite Member


Date Joined Feb 2004
Total Posts : 19561
   Posted 2/17/2015 11:04 AM (GMT -6)   
No Burli, when I developed that rectovaginal fistula over a year ago and became sooooo constipated I stopped taking everything cuz I was such a mess and in sooooo much pain, I was only eating every other day to try and cut down on BM's with having that fistula.
DX with Crohn's Disease in 1991 shortly after becoming ill. CD was affecting small and large bowel & anus (perianal crohn's skin tags) & rectum for first 2 yrs of becoming sick, CD remained constant in colon (Crohn's colitis) & anus with anal tags, intolerant to oral meds. Currently on Humira (Feb 2014) once a week and B12, Vitamin A and Omega's daily. In remission but trying to combat IBS D/C.

Burli
Veteran Member


Date Joined May 2003
Total Posts : 1251
   Posted 2/17/2015 7:51 PM (GMT -6)   
Dang! that is horrible. The reason I asked is you were very strong on that product helping you. My wife recently had cancer and she's into trying new diets and supplements and that was one of them. I just wondered if you believe it is worth purchasing or is a snake oil. She go a double mastectomy so the cancer is gone but she's meeting once a week with a group and brought home all this dietary information; really resembled all the UC things we've batted around for all these years.
I never found them to help me but I'm not going to tell her that; she's got to learn for herself (it at lest is psychologically making her feel better).

I really would like any advice on that product. Sorry to hear you had things so awful.
Male: born '66, diag. hypoglycemic '70; epilepsy '82, UC '84, lost hearing one ear in '04, Remicade (1/10weeks), Imuran 50 mg/day, Apriso, oxycodone - pain; Xanax - simple partial seizures; Carbatrol X - grand mal seizures

pb4
Elite Member


Date Joined Feb 2004
Total Posts : 19561
   Posted 2/18/2015 10:43 AM (GMT -6)   
By no means do I think it was a snake oil, it definitely helped me while I was using it frequency wise, and although I didn't have a lot of D, still mainly formed stools, I think it helped with keeping my stools formed as well. It's just that I became such a mess (not because of the bee propolis but because it's simply what CD can do to our bodies-with developing fistulas-) and considering I've been flaring for over 2 decades and it took that long for me to develop a fistula which is actually quite common for crohn's colitis sufferers (my cd mainly affected my colon over 2 decades, and on and off in the rectum, I'd say based on that alone I was more fortunate than many of my fellow CDers. I also (touch wood) haven't developed a lot of the extraintestinal manifestations that most other CDers also get. Now I don't know if that's thanks to the propolis or not and I'm not saying I was really well off while on propolis either but I wasn't going 30 times a day after I started taking it so I have to give it some credit for sure.

Thanks for your concern, I've definitely been through my own personal wringer thanks to this disease as we pretty much all have, but I can always appreciate there are many much worse off than me, considering I've had CD as long as I have, I haven't had any internal surgeries as a result and that's a huge thing, maybe it's thanks to the propolis as well, I don't know, but when I told my GI I was taking it and how it was helping some, he said stick with it, whatever works is the only thing that matters, he's very open to everything and anything so long as I feel better, he also said it was a good nutritional supplement and if it was helping with symptoms in any way than that was a bonus for me...and that it was non-toxic, it doesn't build up in your system which so long as you're not allergic to bees, makes it safe to use long term.

So sorry for what you've both been through with your health, I wish you both the best in finding good health!
DX with Crohn's Disease in 1991 shortly after becoming ill. CD was affecting small and large bowel & anus (perianal crohn's skin tags) & rectum for first 2 yrs of becoming sick, CD remained constant in colon (Crohn's colitis) & anus with anal tags, intolerant to oral meds. Currently on Humira (Feb 2014) once a week and B12, Vitamin A and Omega's daily. In remission but trying to combat IBS D/C.
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