Shifting perspective on IBS - ScienceNordic article

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Erica P-G
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Post by Erica P-G »

It appears that I will need to find a PCP, my GYNO said my colitis is out of her realm of expertise and she would rather I had a PCP to interact with, even though I seem very knowledgeable in my pursuit to treat MC.

I'm not comfortable continuing with the Dr. Moore who I started my journey with, he doesn't respond to emails, (even though he seemed genuinely interested in my case) and I'm not a fan of his nurse after the last few appts. I have had, she didn't really act like she cared whether I got my information or not. Finding the right connection or fit when you have more information than the Dr. you are seeing has makes it hard for me to decide who I can trust and who I should avoid. It is times like this when I feel like I have run up against a wall that I question do I really need any of the said bile binder in the first place. :sad: I don't want to waste my money or insurance on a pointless appt. that the only reason I would be doing it is to get someone else's ok on a script....not being ill, or have a question as to my symptoms makes me feel like I'm wasting my time making an appt with someone whom I may or may not see eye to eye with, and therefore may not prescribe the Cholest after the appt..... and if I do have a need that arises down the road I truly do need to have a Dr. in my pocket so to speak...such a hard decision.

I guess with all my babbling I need to pick one out of the hat, and just start the process of elimination...sigh. Well this post conversation didn't end on a very high note for me....
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Post by Gabes-Apg »

Erica
Here in Aus, you can get cholestryamine via compounding pharmacy WITHOUT doctors script.

given your comments above about previous doctors etc, if you need a script in USA, maybe align with a functional practitioner, not necessarily doctor, Chiropractors, Naturopaths, Nutritionists etc can write compounding scripts, and order tests etc

It is interesting the 'Email' contact that some of you have in the USA with your doctors.
Here in Australia there is no email contact with any specialist/doctor etc, and hardly any have nurse practitioners. It is face to face or nothing.
Lately there has been a change that you can not get test results over the phone, you have to have face to face appointment. (although I did get a call from the doctor from my recent blood work as my B12 was way way down and she wanted me to increase the B12 immediately)
some doctors will offer a phone consult, but this is not subsidized or claimable under the govt medicare system.
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Erica P-G
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Post by Erica P-G »

That's incredible Gabes....it used to be that way (where I am) but recently I have found that the Women's Clinic wants us to use a Portal where all our information is and where we can email and check appt status and conduct business and stay up to date on our information. All new practice to me, but I have liked the interaction, I feel like I am being listened to and not required to charge an office visit every time I have a simple question.

In my rural parts I may have to eat Crow and make an appt with my previous Dr. as he seems to be the only one that is Family Practice and knows my history, has an interest in GI and who I can keep as a PCP. I have only one other alternative who is a naturalistic Dr but don't know her scope for treatment, but will keep her in my sight should my current situation fail.

Ugh..the trials and tribulations of this situation....I get to a point I get tired of telling my story to Drs.
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Post by dfpowell »

Erica,

I got my prescription for cholestyramine from my PCP, have not seen a GI in over 3 years. I also took with me several articles supporting the use of cholestyramine for MC. She appreciated the articles and wanted to keep them in case insurance questioned the use of cholestyramine.
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Erica P-G
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Post by Erica P-G »

Thanks Donna,
There really shouldn't be any issue should there. I'll get my ducks in a row and be as prepared as I can be....😉👍
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Post by brandy »

Interesting conversation. I think I will cut back from my 3 cups of tea per day to 1.
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Post by Polly »

Am following this thread with interest and looking forward to hearing the results of those who try the cholestyramine.

Polly
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Erica P-G
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Post by Erica P-G »

Hi Polly,
I got the Cholest packets today....but they have a hint of orange flavor which I dug deeper and it is nutrasweet aspartame :sad: Now I'm a bit perplexed....going to give this a shot...my DNA says saccharin should not affect me, but we all know that MC trumps that card so I really don't know what to expect. I do have the back up of Food Grade Diatemaceous Earth that I can fall back with....

Onward....here's to science once more!
To Succeed you have to Believe in something with such a passion that it becomes a Reality - Anita Roddick
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Post by hollyweb »

Good luck, Erica!

I, too, have my script for the Cholestyramine (got it from the nurse practitioner at my PCP's office ... sometimes the nurse practitioners are more open-minded), but won't be starting it quite yet. Am also so anxious and hopeful to hear how you do with it! Wishing you all the best and looking forward to your updates!

~ Holly
2015 Hashimoto's, MTHFR
2016 LMC, Malabsorption
2017 Lymphocytic Dermatologic Vasculitis

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Post by Polly »

Erica,

If you don't tolerate the artificially-sweetened one, ask your doc for the cholestyramine regular. I use the regular (contains sucrose). There seems to be a "myth" that the regular will ruin your teeth. Don't know where it came from.......perhaps one case years ago in the literature? I believe a dose contains about 6 grams of sugar. A lot less than you would get from a candy bar. It's always wise to brush teeth after anything sweet! Good luck to you and Holly!

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Post by hollyweb »

Thank you, Polly!!

~ Holly
2015 Hashimoto's, MTHFR
2016 LMC, Malabsorption
2017 Lymphocytic Dermatologic Vasculitis

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Post by christinafriberg »

Erica-I'm curious about Food Grade diatomaceous earth? Does it help with bile acid malabsorbtion? In other words a substitute for cholestyramine?
Thanks-Christina
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Post by Gabes-Apg »

Christina
here is some information I provided about Diatomaceous earth (from a different discussion)
I meant to mention, since I started the liquid magnesium (similar to ReMag) (and I have been taking Diatomaceous earth) my poop has been near perfect every day for the first time in over 20 years, the past fortnight is the first time my poop has been 'consistent' every day

It has taken me 3 years of various supplement protocols to correct my nutritional deficiencies /imbalances and get to this level of healing.
all along I have had to listen to my body, be patient and 'hang in there'.

Further
What i found works for my routine and the gut is having small amt DE 45 minutes before breakfast and again before my evening meal
this coupled with the other things I am doing, means that poop happens in the morning and late afternoon - both times when I am at home (and not at work etc)

We need a certain amount of bile in the digestion process to absorb key nutrients like B12, K etc so that is why I think DE is better than Cholestryamine in relation to parasites/toxins/biotoxins/clearing excess metals.

Dr Lawrence Wilson - who has written endless articles about nutritional health and Weston A Price foundation both recommend it and have good articles about the uses of DE

http://www.westonaprice.org/health-topi ... -a-hatter/
Quote:
Until we can clean up the planet and our act, we fortunately do have a “dirt cheap,” stop-gap way of coping with metal toxicity. That solution is diatomaceous earth. Dr. Knight has extensively tested a product produced by Perma-Guard that is also available through WisdomWays in Edgewood, Colorado.58 Diatomaceous earth comes from fossilized shells of freshwater diatoms and is found in vast deposits all over the earth. Made up of silicone and trace minerals, diatomaceous earth can, according to the scientific literature, absorb methyl mercury, E. coli, endotoxins, viruses (including poliovirus), organophosphate pesticide residues, drug residue, and protein, perhaps even the proteinaceous toxins produced by some intestinal infections.59,60

The only caveat is that diatomaceous earth used for human or animal detoxification must be food grade. People and other mammals should never use the coarse, crystalline form of diatomaceous earth sold for use in swimming pool filters or as insecticides, or sources of diatomaceous earth contaminated with toxins like arsenic and the metal toxins. If inhaled, the crystalline form can cause a disabling lung disease called silicosis and upon ingestion might puncture the lining of the alimentary tract. Foodgrade diatomaceous earth binds metals and other toxins, gently siphoning or leaching them out of storage areas and passing them innocuously out of the body.61

Microscopic live cell analyses of blood taken from individuals who have detoxed using food-grade diatomaceous earth for many months display little evidence that the particles make their way intact into the blood. Hair analyses of these individuals display normal or even slightly low amounts of silica. This evidence, combined with a very low trace and toxic mineral content (usually in parts per million), supports the concept that diatomaceous earth works by removing toxins that poison the immune and regulatory functions, rather than by adding trace minerals that support these processes.62

http://www.drlwilson.com/Articles/PARASITES.HTM
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Erica P-G
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Post by Erica P-G »

Erica-I'm curious about Food Grade diatomaceous earth? Does it help with bile acid malabsorbtion? In other words a substitute for cholestyramine?
Thanks-Christina
Christina, It appears the the Dr. I visited yesterday said he had a few clients that have been using the DE as a natural approach to the Cholestyramine....so I'm going to say YES....and it can't hurt to try the Food Grade Diatomaceous Earth.. https://www.diatomaceousearth.com/food- ... ous-earth/ this is the only site I would buy it from...the prices are on target and it should not cost an arm and a leg for this product, so do not get bamboozled by other sites.

I've had my 10# of DE for a while, I've given some away, fed it to my horses, dogs, cats....Me :smile: and now it appears I can really benefit from it once again. So I will watch for side affects from the orange flavor of the new srcipt I just got and if I just can't tolerate it I will ask for a new script in plain and also keep taking the DE I have on hand. I don't need much and I only take about a table spoon when I do, and I will have to adjust from there up or down.

My first dose today and I haven't had any issues yet, even had a few poofy BM's this afternoon...if I could shrug my shoulders in this sentence I would be doing just that...because to me that is a different scenario that I was having a weekend ago.

Onward :grin:
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Post by tex »

Erica,

This is supposed to be the "shrug" emoticon:

:shrug:

Tex
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It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
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