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08-08-2017, 03:06 PM   #1
newdiagnosis
 
Join Date: May 2017
Alternative Medicine

Anyone try alternative, complementary therapy. For instance LDA therapy? (Low dose antigen therapy). I had a consultation with this integrative medicine doc, and feel like this is a whole bunch of snake oil. Wondering what your thoughts are.
08-09-2017, 04:55 AM   #2
hugh
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start with diet, paleo spectrum (paleo, perfect health diet, SCD etc), modify till you hit your sweet spot.
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08-09-2017, 10:51 AM   #3
Mickblake13
 
Join Date: Aug 2017
Location: Scarborough, United Kingdom
Research use of Cannabadiol. Interesting reading.
08-10-2017, 08:36 AM   #4
D Bergy
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There are many unconventional or alternative treatments available. I really don't care which type of treatment I use as long as it is effective. That is the key to the whole problem.

I have used and continue to use alternative treatments for my Crohn's disease simply because the conventional treatments of Imuran, steroids, and a real expensive prescription that I can't recall the name of right now either did not work for me, or only offered a short term relief of symptoms. LDN was an unconventional treatment I used and that did not do the job either.

I was also concerned that the mechanism behind the immune suppressant line of treatment is only allowing pathogens to accumulate in the future potentially causing a worse condition down the road.

Whether it is alternative or conventional, they all have the potential for failure or success depending on your specific cause of the disease. I have spent a lot of time attempting to pin point what pathogens cause my inflammation. Hopefully I have most or all of them nailed down and my treatment is effective in reducing them or eliminating them. I have no evidence to suggest otherwise but of course I do not have perfect information either.

You do not have to pick one over the other. I use conventional treatments at times for various things or alternative. I know through years of experience and research that many alternative treatments do work, but are not suitable for all things either. It's not really an either/or choice and sometimes both can be used at the same time.

I have never thoroughly investigated LDA therapy, although someone once suggested it to me who had Crohn's and did get a good result using it. I have some information on it I saved for possible future reference, if I need a plan C to fall back on. Right now I am confident that my current treatment is doing what it is supposed to, but if that changes I will also be looking at LDA more closely.

LDA may fail you, but every treatment out there has that potential. It is, in the end, trial and error no matter how you go about treatment.

Good luck to you in your Crohns disease battle. If you go the LDA route, let us know your results, or lack of results. It is all useful information either way.

Dan
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08-12-2017, 03:16 AM   #5
Crohn2357
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Swedish tincture

Propolis

Royal Jelly

S. Boulardii

Rick Simpson Oil

Vitamin E enema (for rectal UC).

Nopal Water

Qing Dai (for UC).

Autoimmune Paleo Diet

These are some of the things I can remember. You can research them further.
08-30-2017, 06:11 PM   #6
Crohn2357
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Bone broth and ginger tea helps too.
08-31-2017, 12:25 AM   #7
newdiagnosis
 
Join Date: May 2017
Very interesting. What is the best way to learn about the Paleo diet?

08-31-2017, 12:26 AM   #8
newdiagnosis
 
Join Date: May 2017
Also aren't vegetables sometimes bad for those with Crohn's?

08-31-2017, 01:46 AM   #9
Guerrero
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Bad in the sense they could bother your colon and fiber should be avoided in case of strictures.

The low fodmap diet is recommended during flare. Scd diet didnt received any serious scientifc or medical support for crohn's.
09-01-2017, 05:46 PM   #10
enlightenmetoday
 
Join Date: Mar 2016
Location: Beavercreek, Ohio
I think that the illness needs to be recovered in stages. Your intestines need to heal first in order for some remedies to work. Can't start to heal with inflammation. Here is my 20,000 foot view of what healed me:

I used Bone Broth and natural anti-inflammatories after I tapered off Prednisone in my post hospital stay. Took no other medication.

Also incorporated the elemental diet to give my digestive system a rest. Worked out great.

After I was rested I began to repopulate my micro biome w/ probiotics. Careful and Buyer Beware...you must get the right ones. Not all strains/species/brands work the same.

I took LDN later to help heal the mucosal lining of my intestine. There are studies that has worked on lab animals.

Each person is different but I think the general concept of dealing with it in stages is legit for all.
09-02-2017, 02:52 AM   #11
hugh
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Very interesting. What is the best way to learn about the Paleo diet?
Paleo is a fairly broad label now days.
This video is a good start.....
http://www.crohnsforum.com/showthread.php?t=48559

but
I'd start with Paul Jaminet's Perfect Health Diet.....

Bowel Disorders, Part I: About Gut Disease

“In our view, various dietary and nutritional tactics are critical, with toxin elimination and vitamin D normalization among the most important steps. Most medical treatments are likely to be ineffective if the diet is bad.
Steps to improve gut flora may be essential. This is a fascinating approach which is gradually migrating from alternative medicine to research hospitals. In effect, friendly bacteria become warriors against pathogens on the patient’s behalf.
Medical treatments can be very helpful, and can include antibiotics such as rifaximin to treat infections and thyroid hormone to promote healing and immunity. Extremely popular among doctors is the use of anti-inflammatory drugs to help reduce autoimmune damage. Both antibiotic and anti-inflammatory drugs have dangers however.”


http://perfecthealthdiet.com/2010/07...g-gut-disease/

Bowel Disease, Part II: Healing the Gut By Eliminating Food Toxins
“Summary of Toxic Foods to Eliminate or Avoid
In short, bowel disease patients should eliminate toxic foods from their diet:

Eliminate all grains except rice.
Wheat, oats, and corn, and their products such as wheat flour, cornstarch, bread, and pasta, must be eliminated.
Eliminate all legumes, especially soy, beans, and peanuts.
Eliminate omega-6 rich oils, such as soybean oil, safflower oil, corn oil, peanut oil, and canola oil.
Eliminate fructose sugars, except from fruits and berries. Drink no sugar-containing beverages.
Minimize fiber to keep down gut bacterial populations and avoid mechanical injuries to the intestinal wall.
Minimize other potentially toxic protein sources. In general, protein should be obtained from animal and fish meats, not eggs, dairy, or plants. However, fats from dairy and eggs are highly desirable.

When gut health is restored, dairy and fiber may be restored to the diet. However, the major toxic foods – grains, legumes, omega-6-rich oils, and most fructose – should be eliminated for life.”

http://perfecthealthdiet.com/2010/07...g-food-toxins/

Bowel Disease, Part III: Healing Through Nutrition
Summary
Although not a complete list of the vitamins and minerals which may be helpful to bowel disease patients, these are among the most important – and most often overlooked:

- Vitamin D3 sufficient to raise serum 25-hydroxyvitamin D above 40 ng/ml.
- Vitamin K2, at least 100 mcg/day.
- Magnesium citrate or bis-glycinate, 200 mg/day.
- Melatonin, if needed for deep restful sleep.
- Selenium, 200 mcg/week.
- Iodine, 225 mcg/day.
- Thyroid hormone sufficient to bring TSH below 2.0.
- Vitamin C, 1 g/day.
- Glutathione, 500 mg/day, preferably in the reduced form, taken between meals on an empty stomach with a full glass of water (since it is destroyed by stomach acid).
- N-acetylcysteine, 500 mg/day.
- Iron, zinc, and copper sufficient to relieve deficiencies.
- Taurine, 1 g/day.
- Glycine (if insufficient extracellular matrix is eaten), up to 5 g/day.”

http://perfecthealthdiet.com/2010/07...ugh-nutrition/


Bowel Disease, Part IV: Restoring Healthful Gut Flora

“Conclusion
Fecal transplants are the best probiotic. Tactics to disrupt pathogenic biofilms can assist probiotics in bringing about re-colonization of the digestive tract by commensal bacteria.
Along with a non-toxic diet (discussed in Part II) and nutritional support for the immune system and gut (discussed in Part III), these steps to improve gut flora make up a natural program for recovery from bowel disease.”

http://perfecthealthdiet.com/2010/07...ful-gut-flora/

Last edited by hugh; 09-02-2017 at 03:07 AM.
09-04-2017, 10:17 PM   #12
newdiagnosis
 
Join Date: May 2017
Very interesting. Anyone have any success with the perfect health diet? Seems interesting. Thinking of buying the book.

Paleo is a fairly broad label now days.
This video is a good start.....
http://www.crohnsforum.com/showthread.php?t=48559

but
I'd start with Paul Jaminet's Perfect Health Diet.....

Bowel Disorders, Part I: About Gut Disease

“In our view, various dietary and nutritional tactics are critical, with toxin elimination and vitamin D normalization among the most important steps. Most medical treatments are likely to be ineffective if the diet is bad.
Steps to improve gut flora may be essential. This is a fascinating approach which is gradually migrating from alternative medicine to research hospitals. In effect, friendly bacteria become warriors against pathogens on the patient’s behalf.
Medical treatments can be very helpful, and can include antibiotics such as rifaximin to treat infections and thyroid hormone to promote healing and immunity. Extremely popular among doctors is the use of anti-inflammatory drugs to help reduce autoimmune damage. Both antibiotic and anti-inflammatory drugs have dangers however.”


http://perfecthealthdiet.com/2010/07...g-gut-disease/

Bowel Disease, Part II: Healing the Gut By Eliminating Food Toxins
“Summary of Toxic Foods to Eliminate or Avoid
In short, bowel disease patients should eliminate toxic foods from their diet:

Eliminate all grains except rice.
Wheat, oats, and corn, and their products such as wheat flour, cornstarch, bread, and pasta, must be eliminated.
Eliminate all legumes, especially soy, beans, and peanuts.
Eliminate omega-6 rich oils, such as soybean oil, safflower oil, corn oil, peanut oil, and canola oil.
Eliminate fructose sugars, except from fruits and berries. Drink no sugar-containing beverages.
Minimize fiber to keep down gut bacterial populations and avoid mechanical injuries to the intestinal wall.
Minimize other potentially toxic protein sources. In general, protein should be obtained from animal and fish meats, not eggs, dairy, or plants. However, fats from dairy and eggs are highly desirable.

When gut health is restored, dairy and fiber may be restored to the diet. However, the major toxic foods – grains, legumes, omega-6-rich oils, and most fructose – should be eliminated for life.”

http://perfecthealthdiet.com/2010/07...g-food-toxins/

Bowel Disease, Part III: Healing Through Nutrition
Summary
Although not a complete list of the vitamins and minerals which may be helpful to bowel disease patients, these are among the most important – and most often overlooked:

- Vitamin D3 sufficient to raise serum 25-hydroxyvitamin D above 40 ng/ml.
- Vitamin K2, at least 100 mcg/day.
- Magnesium citrate or bis-glycinate, 200 mg/day.
- Melatonin, if needed for deep restful sleep.
- Selenium, 200 mcg/week.
- Iodine, 225 mcg/day.
- Thyroid hormone sufficient to bring TSH below 2.0.
- Vitamin C, 1 g/day.
- Glutathione, 500 mg/day, preferably in the reduced form, taken between meals on an empty stomach with a full glass of water (since it is destroyed by stomach acid).
- N-acetylcysteine, 500 mg/day.
- Iron, zinc, and copper sufficient to relieve deficiencies.
- Taurine, 1 g/day.
- Glycine (if insufficient extracellular matrix is eaten), up to 5 g/day.”

http://perfecthealthdiet.com/2010/07...ugh-nutrition/


Bowel Disease, Part IV: Restoring Healthful Gut Flora

“Conclusion
Fecal transplants are the best probiotic. Tactics to disrupt pathogenic biofilms can assist probiotics in bringing about re-colonization of the digestive tract by commensal bacteria.
Along with a non-toxic diet (discussed in Part II) and nutritional support for the immune system and gut (discussed in Part III), these steps to improve gut flora make up a natural program for recovery from bowel disease.”

http://perfecthealthdiet.com/2010/07...ful-gut-flora/
09-04-2017, 10:23 PM   #13
newdiagnosis
 
Join Date: May 2017
Also, in the book they emphasize that Crohn's is probably an infectious process. Has anyone had any success treating crohn's with antibiotics?
09-04-2017, 10:31 PM   #14
newdiagnosis
 
Join Date: May 2017
Interestingly I did have a species of mycobacteria that grew from one of the cultures on my biopsy, but the infectious disease specialist did not feel that this was a pathogenic organism. It wasn't MAP though.
09-06-2017, 02:49 AM   #15
hugh
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Very interesting. Anyone have any success with the perfect health diet? Seems interesting. Thinking of buying the book.
I'd listen to a few of his podcasts and interviews first, see if the PHD resonates before spending the money [1]. Also (from memory) there is almost nothing specific to bowel disease in the book

I got it from my library, enjoyed the read but don't feel a need to own it yet.

First find out more about paleo in general [2] and move in that direction,
Once paleo then fine tune to the 'flavour' of paleo that suits you best.

Something that you should absolutely look into is SCD and GAPS[3].

They are basically versions of paleo that are specifically looking at healing digestion and their introductory diets are an important part of transitioning to a real food diet. They unfortunately rely heavily on eggs and yoghurt and i personally did not have good results with SCD until i stopped the yoghurt.....


[1] http://perfecthealthdiet.com/the-diet/

[2] there are thousands of web pages for and against paleo, spend a while as there are fruitcake paleo ideas and very wise paleo ideas out there but you have to work out which is which.
The basic principle is to only eat real food that is nourishing to you.
There's lots of 'paleo' food that you probably shouldn't eat, depending on your digestion.
there's probably a few non-paleo foods that won't do you any harm.
Everything needs to go through the filter of some form of elimination diet....
Basically eliminating all potentially troubling foods and reintroducing them in a controlled manner to gauge your reaction.

[3] What Is the Specific Carbohydrate Diet?
http://scdlifestyle.com/about-the-scd-diet/
Getting Started with the SCD Diet with Steven Wright
https://drruscio.com/getting-started...steven-wright/
Podcast: Transitioning from the Intro Diet
http://www.naturaldigestivehealing.c...he-intro-diet/
The Stages of the Diet
http://pecanbread.com/f/how/stages.html

http://www.gapsinfo.com/gaps-introduction-diet/
10-10-2017, 04:00 AM   #16
stephensam
 
Join Date: Oct 2017
Following the doctor advice is best thing. I am not try any alternative medicine for the LDA therapy.
10-14-2017, 05:28 AM   #17
MaryCherub
 
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I had a consultation with this integrative medicine doc, and feel like this is a whole bunch of snake oil.
I have found that a positive attitude goes a long way with UC.

Saying "snake oil" is such a negative thought to start with.

If it wasn't for other forms of treatments - I think I would be dead by now.

I have had great success with diet, supplements, meditation and herbal medicine.
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