Trying to help my Crohn's with MAP elimination protocol

[caledon]

*not a doctor or a scientist speaking

Read some interesting articles that point to Crohn's being caused by a bacteria called MAP. MAP is not your typical bacteria because it infects your white blood cells and uses them to multiply. Infected white cells stop working well and now all sorts of other bad bacteria run crazy in your system and inflammation starts (or something like that).

So the idea is if you kill MAP could put Crohns disease into remission. I read an interesting article on stem cell research with Crohns where they kill off all of your white cells using chemotherapy and reimplant new ones. This made me originally think that it was proof Crohn's was not caused by an infection. However if the infection lives in your white blood cells then maybe this is actually proof towards this MAP idea.

So on the basis of this I think I am going to try and do some sort of therapy that will kill MAP. Unfortunately antibotics are out of the question because doctors will not give them to me and they could make the situation worse.

What I know about MAP is this. It's brother and sister bacteria are Tuberculosis and Leprosy. So I am looking to try and find treatments that work for those two items.

Also I think your body can kill MAP by releasing something called a peptide (sp?). I will be looking for ways to increase peptides in my blood to hopefully turn the tide. Also if the MAP theory is wrong, but your are infected by something else the peptides may also kill that as well.

Finally MAP is a slow divider and if you do find something that works you probably should try to stick with it for 2-3 years.

So here are my early ideas on what could kill MAP:
My number #1 hope item is vitamin D. This helps the body create Cathelicidin which tells your immune system to make peptides. Ways to get vitamin D that I know of:
Sunlight (probably the most important) = I think you need serious sunlight. I was just in a tropical place and hung out at the beach all day long and even though I was doing really bad things like drinking and going off my diet my condition seemed to improve. For TB people used to go to sanitariums pre antibotic days and spend their time. Also Vitamin D has been proven to help with crohns.
Dietary sources:
Fatty fish
Egg yolk
Broccoli (somehow helps you absorb it).

My #2 item is tumeric: I hear this is supposed to increase peptides as well, but not as good as vitamin D.

My #3 item is fasting: I read that this also increases peptides. There is a guy on here who said his Crohn's went into remission who goes on juice fasts. Who knows maybe the fasting itself helped him get over his symptoms.

My #4 item (moving away from the peptides theory) is wheatgrass. I read that this is used to close leprosy sores that cannot be healed. Also I read a study where this helped with Ulcerative Colitis.

That is all I have for now. Please feel free to poke holes in my theories or add ideas on how you could kill MAP.

I will try to post updates as I go.

To start with I will begin to sunbath everyday for 10-15 minutes 2x and I will go outside for lunch and sunbath on the weekends. I will take 10000 UI of vitamin D dietary and I will eat more eggs and salmon. I will also start taking tumeric.

 

[nogutsnoglory]

I have edited your post to remove mentions of a cure. There is no known cure for IBD but it is possible to go into remission. Many have tried anti-MAP protocols, some found it helpful others find it didn't change things. I wish you the best of luck on trying to achieve remission.

 

[Beach]

I remember reading an interesting book about TB last summer called, "The White Plague: Tuberculosis, Man and Society". It was written by Professor Jean Dubos in the 1950s, I believe.

It was about the modern history of TB - how the disease largely sprung up once people began to move away from farms and into cities. Additionally he pointed out that TB cases were decreasing greatly before antibiotics came along. As with other plaques in history, TB came along, grew in growth greatly with little known reason why, and then began disappearing with out knowing the cause.

Dubos also pointed out that at one point nearly everyone was testing positive in the US for the TB bacteria, yet for some reason only few would develop the condition. I know my grandma is that way today. Born in the 1920s, she tests positive for TB and yet never had symptoms of the disease. Her grandmother though, who my grandma was living with after she was born, passed away from consumption.

Anyway, with that mention about TB being on a downward trend before antibiotics came along, it made me wonder if efforts to use sensible sun exposure to fight TB were helping to control the diseases spread at that time.

If there is a connection to MAP, TB bacteria and crohns disease, hope your ideas work out. if you have not already you might look into taking or eating the co-factors associated with vitamin D. Testing your vitamin D levels would be helpful too.

"Vitamin D and other vitamins and minerals"

http://www.vitamindcouncil.org/about-vitamin-d/vitamin-d-and-other-vitamins-and-minerals/

Also the Weston Price Foundation has some interesting information on their sight about Dr. Price's observations in the 1930s on different societies that seemed to show immunity to TB, concerning those societies diets and sun exposure.

 

[worriedboy]

Thought it may interest you if you havent seen it yet : Redhills Biopharma's RHB-104

 

[caledon]

Beach thanks so much for the comments. You saved me many hours of research with that information packed post!

I would like to add that my early theory is to increase my bodies levels of Cathelicidin, which should kill MAP. Cathelicidin also kills other bad microbes so if this works, it could be that there is some other bad microbe causing the problem so it may be that my MAP theory is wrong, but the treatment still could help.

I started taking vitamin supplements for all of the co factors for vitamin D today with the exception of vitamin A. I drank a carrot and spinach juice I made with my juicer for that.

I plan to try and get sleep and avoid stress as well (this will be the hardest thing to do of all).

I went outside looking forward to getting sunlight only to find it was cloudy today. This could be a little more tricky then I thought.

I read that getting sunlight through glass does not work for vitamin D.

When I got sick it was at the end of winter. I worked late nights and through lunch. I would swear that I never saw the sun.

Later I moved from the northeast to southern California. I noticed an improvement in my condition. Maybe it was just being outside more and getting sunlight!

I hope that antibotic works in phase III. Can you imagine taking a course of antibotics and actually being cured of crohns?

 

[Trevor]

The potential relation between TB and Crohn's is something I find really interesting.

Similar to others I've talked with I first developed symptoms during college when I was inside a concrete building for 12 hours a day and went months and months without seeing daylight sometimes let alone sunshine.

My lifestyle the last five years or so has been devoid of sunshine 90% of the time. It was a rare day I spent any appreciable time in the sun.

I've made an effort to get good sun exposure the last month or two and it certainly seems to be making a noticeable difference.

 

[Beach]

I can certainly vouch for vitamin D helping to prevent other microbes from infecting the body - the flu bug in particular. I used to be similar to most with experiencing one or two bouts of the flu a year. Over the last 6 years I've only had one short time with a cold since taking vitamin D3 supplements.

On vitamin A, thought to mention what I've recently begun to do. Vitamin A seems to be a controversial topic when it comes to taking or obtaining vitamin D from the sun. Some will say that to much vitamin A will over ride the benefits of vitamin D. I believe the article I posted yesterday likely mentioned this. Others say this is not true about vitamin A - that vitamin D and A work well together. Basically, the science isn't settled it seems.

A problem comes up in that plant beta carotene is poorly converted into vitamin A by our body. So with this being the case, what I've begun to do since I tend to eat few foods (eggs, liver, dairy, etc) that are naturally rich in vitamin A, I've begun taking a natural vitamin A capsule each Sunday. This is a new supplement addition to my diet. I haven't noticed much difference since doing this, other than the vitamin A does seem to brighten up skin tone.

In the past I've read our ancestors would take fermented cod liver oil, which is high in vitamin A during winter time to avoid the flu. So I figure the fat soluble Vit A is likely also involved with helping to boost the immune system in some manner.

Keep us posted on how things go! After your mention on TB, MAP, Cathelicidins and sun exposure, I did some digging around on the internet about heliotherapy from the past, last night. It was nice to read the success some were experiencing.

 

[wild_one353]

its not just map thats a problem,there may be a few bacteria that can survive within a cell and persist due to autophagy defects in genes, or even without defects.

stimulating autophagy may eliminate them, i have used resveratrol to do this and i believe it was successfull. did not cause a remission tho.


Fasting or caloric restriction is your best bet for getting a remission, it also stimulates the process of autophagy. autophagy is the process which the body uses to get rid of intracellular pathogens. but this isnt how a Caloric restriction would cause a remission, caloric restriction dramatically lowers inflammation too, and its this that may cause a remission because the inflammation which produces nitrate as a byproduct is what allows the raise in enerobacteria in crohns, as this physiological change fertilizes their growth. by dramatically lowering inflammation, these bacteria will disappear. http://medicalxpress.com/news/2013-02-scientists-key-growth-bad-bacteria.html

arginine is what the body uses to create nitrite and nitrate. so you need to equally reduce protein along with all other nutrients. you can go as low as 75% cr for 6 weeks without ill effects on the body as long as micronutrients are sufficient. the most extreme would be water fasting, but that has been shown to be very stressful on the body while CR is very healthy. you could probably do a 40% CR long term for life and be much healthier because of it.

maybe 40% could maintain your remission for a long time, while 75% CR may induce it.

by combing the Specific Carbohydrate diet(low lactose sucrose and some starches) with a Calorie Reduced diet, you can reduce inflammation and starve the bad bacteria and likely, induce a remission.

- skip turmeric, yes it helps but over the long run it is such a good mineral chelator you will have a hard time absorbing minerals.

- VIT D-i tried 10000 iu of vit d before too, i became toxic after a while and kideys start to hurt, and i became super fatigued. i suggest just sunbathing for only a short period, we have messed up the ozone layer pretty bad and the levels of radiation damage the skin more now. after sunbathing for a week or two take 1000-2000iu vitamin d daily.

if you want to cure your crohns do a fecal transplant to restore the bacteria that have been damaged. im about to do this in 2 weeks. my donor is taking blood tests for hiv and hep in a few days.

 

[Beach]

That's not good Wildbill about becoming ill when taking vitamin D!

It does bring up a good point - the way to avoid vitamin D toxicity is to test vitamin D levels. 10,000ius a day of vitamin D might not be enough vitamin D for some people to reach optimal testing levels. For others 1000 to 2000ius of D3 might cause toxic issues. Everyone is different with absorption abilities, and needs.

I personally take 5000ius of D3 a day, plus a little sun exposure to keep my testing D3 levels between a safe 50 to 70ng/ml.

Good luck with the fecal transplant. Hope it works out.

I've seen a few write ups on D3 toxicity, but one I recall about tropical sun exposure and testing levels.

"What is a healthy vitamin D blood level?"

excerpt from Dr. Davis's article:

...In this New Zealand study, 42 women (23 to 68 years old) were given 4000 units vitamin D, 39 women given placebo. Median 25-hydroxy vitamin D levels increased from 21 nmol/L (8.4 ng/ml) to 75 nmol/L (30 ng/ml). Both HOMA (a measure of insulin sensitivity) and fasting insulin levels improved, with greatest improvement seen at 25-hydroxy vitamin D levels of 80-119 nmol/L (32-47.6 ng/ml) or greater.

We also know that a vacation on a Caribbean beach in a bathing suit will increase vitamin D blood levels to the 80-110 ng/ml range without ill-effect (at least in young people who maintain the capacity to activate vitamin D in the skin, a phenomenon that declines as we age).

So do we really know the truly ideal level of vitamin D to achieve? I believe that, given the above observations, it is reasonable to extrapolate that the ideal vitamin D blood level likely lies somewhere above 50 ng/ml. We also know that vitamin D toxicity (i.e., hypercalcemia) is virtually unheard of until vitamin D blood levels approach 150 ng/ml, and even then is inconsistent. The health benefits of vitamin D supplementation are so tremendous, that I am not willing to wait for the prospective data to explore this question fully. For now, I aim for a blood level of vitamin D of 60-70 ng/ml (150-175 nmol/L).

The rest of the article can be seen at:

http://blog.trackyourplaque.com/2009/11/what-is-a-healthy-vitamin-d-blood-level.html

 

[caledon]

I think I am only a couple steps removed from this crazy woman.
Woman attempts to live on nothing but water and sunlight

I actually believe it is possible that what she is doing would cause remission in crohns. Unfortunately I believe that a long term fast is probably too damaging to your body.

I live in SoCal and for 3 days now it has been cloudy. What is up with that?

I do feel like the co factors and my new diet rich in co factors and calcium (eggs, salmon etc) seems to be having a good affect and with each passing day I have seen my condition improve. For each day I have only gone to the bathroom once and each time the quality of my stool has gotten better. Hopefully it is not a fluke!

I guess we will have to see what happens over the next couple weeks. I changed a lot of things at the same time which is dangerous because you never know if one of them is making the situation worse.

This is what I am currently doing:
Florestor 2x a day
Dr Udo's super 8 2x a day
Zinc
Vitamin K
Magnesium
Boron
Centrum Multivitamin
10000 mg calcium (5k morning, 5k night)
Lialda
Vitamin C
Vitamin E

Diet Changes:
Eggs
Broccoli
Avacodo
Salmon
Carrot+spinach juice

 

[caledon]

I hope your fecal transplant works as well!

Immediately after my colonoscopy to diagnose myself I became seriously sick and started going to the bathroom 20x a day. At the time I was planning to do a fecal transplant.

If things had not improve so much for me with the of the supplements I tried I would have done it.

 

[caledon]

One final thing, I read that doxycycline causes a reduction in Cathelicidin.

Maybe all antibotics do and this is why TB took off back in the day when it was introduced.

 

[Trevor]

From wiki:

Vitamin D up-regulates genetic expression of cathelicidin, which exhibits broad-spectrum microbicidal activity against bacteria, fungi, and viruses.

That is super interesting...

 

[UnXmas]

I think I am only a couple steps removed from this crazy woman.
Woman attempts to live on nothing but water and sunlight

Sounds a bit like anorexia mirabilis , but for a different religion.

 

[D Bergy]

Higher doses of D3 should always be used with K2 to prevent toxicity. Also to prevent bone loss. It is important to check blood levels of D3. Absorption varies a lot between different people.

Dan

 

[Beach]

I think I am only a couple steps removed from this crazy woman.
Woman attempts to live on nothing but water and sunlight

I remember seeing that piece and wondering, Seattle? Sun? Is that true? That isn't a combination one sees much of. :lol2: As much rain as Seattle gets, I believe, it seemed a bit like saying you're taking a vacation to Ireland to visit the beaches in order to work on your tan. Who knows though. Hope it works out well for her.

I lived in Portland, OR for awhile as a child, and remember the constant drizzle. Maybe it is different in Seattle.

What she is doing did remind me too a bit also of Starvation Heights, the sanitorium based out of Seattle 100 years ago that would starve patients to death, looking for cures to health problems.

"Starvation Heights"

http://www.starvationheights.com/

I believe that sun exposure might be linked to longer life though. Every once in awhile I'll run across an article mentioning that vitamin D3 increases DNA Telomeres length.

"Vitamin D and programmed aging?"

http://blog.trackyourplaque.com/2008/07/vitamin-d-and-programmed-aging.html

One of the Co-Founders of the sight, David, has mentioned that sun exposure helped place his colitis into remission. Hard to say what has worked best as I've read David made many changes with his diet, takes supplements such as magnesium, vitamin K2, etc, drinks kefir, but he also works in sunny S. Florida. I recall him mentioning that he makes it a point to obtain some noon time sun exposure when possible, avoiding being burnt. With sensible sun exposure he has been able to obtain a testing vitamin D level in the 80s I believe.

 

[caledon]

Finally the sun was out today! I stood outside without my shirt on for 15 minutes.

I guess I will try to put my focus on getting more vitamin D3 from the sun and the co-factor vitamins. I probably have to stick to this for a little while to monitor the results before I try to add something else.

This is what I have read.

• Sunburn seems really closely related to skin cancer.
• The best time to get D3 from the sun in the afternoon
• There is a controversy about if soap can wash off the vitamin D3 in 48 hours after you are exposed to the sun (not proven)
• You need to take magnesium if you are going to supplement vitamin D3 in a high amount
• D3 can actually cause heart disease if you are low in K2
• K2 through diet does not appear to have toxicity
• If you are taking 10000 UI of D3 then you are supposed to take something like 1000 K2. Looking at the food available this is really hard to do.
• K2 seems to reside in a lot of foods that are not potentially Crohns or heart healthy (cheese butter etc).
• To really get a good dose of magnesium you probably have to eat nuts of some sort (also probably not crohns friendly)
• If you are going to eat nuts to get magnesium natural peanut butter is probably better than eating raw nuts because it is easier to digest.
• If you took antibiotic this can hurt your K2 creation as it is made by bacteria in your digestive track
  

 

[caledon]

That thing about starvation heights was pretty sad. It really is the worst in people to prey upon the sick for your own personal gain.

Sometimes I see that in my internet searches. I see a really promising post or link only to have it take me to some 50 dollar eBook site. I do not know if they all work together, but these scam sites all look the same with a gigantic page of testimonials with a credit card number on the bottom.

The more I read about D3 the more I am impressed with how much it helps your body. Perhaps doing this will add a couple years to my life.

 

[caledon]

Thanks for the tip on K2. It really goes to show that when you start taking stuff to the extreme like I am that there are dangers as well. Lots of these items have toxicity or other issues if you take too much.

 

[Beach]

The sun made a brief appears here too! It has been a rather cool, overcast spring in the mid-west, with few sunny days. For awhile this weekend I found myself being able to sunbath for 10 minutes or so. Rather nice. For what ever reason been feeling a bit run over with fatigue of late and some sun exposure seems to be a nice pick me up when that happens.

On heart disease and vitamin K2, I guess K2 has been a disappointment at least for one prevention cardiologist that I follow. Dr. Davis asks his patients to take several supplements such as D3 and K2 along with diet changes in order to prevent cardiacs.

Years ago when doctor Davis asked his patients to take enough vitamin D3 to reach a testing level above 50ng/ml (also to avoid calcium supplements) along with avoiding grains and limit sugar (wheat in particular), to his surprise many of his patients plaque levels dropped. According to medical literature this isn't suppose to happen.

Later he had high hopes that vitamin K2 would help lower plaque levels further. Unfortunately last I saw he commented that K2 has been a disappointment. I believe he now asks patients to eat foods rich in K2 and to take probiotics in hopes of improving gut nutrient fermentation.

Maybe there has been more work done on K2, but I think in part K2 has been thought to help with plaque prevention due to the drug Warfarin. Warfarin works by blocking vitamin Ks use in the body, which has been found to sometimes also increase plaque formation and be behind weaker bones. Possibly there is something else at work?

From Dr. Davis's sight:

"Warfarin is scary stuff"

http://blog.trackyourplaque.com/2008/04/warfarin-is-scary-stuff.html

Anyway - saw more information came out the other day saying that saturated fats found in butter and cheese are probably not harmful to heart health. Seems the science on this has been slowing rotating away from natural fats as been culprits in heart disease, and more toward sugars and grains as being bigger problems to watch.

"Butter has an Undeserved Bad Reputation, According to New Analysis"

http://www.dietdoctor.com/butter-ha...rved-bad-reputation-according-to-new-analysis

 

[caledon]

Went to the beach today and sat out in the sun without sunscreen for 20 minutes.

I have to say that of all the crohn's treatments I have tried this really is the best in terms of enjoyment.

I have been reading a lot of articles (and there is somewhat conflicting information here as well) that vitamin D supplement is actually a steroid and people feel that this could be the reason you might feel better taking D, but then like a steroid it will not maintain over the long run. In fact if it really has that effect it could be suppressing my entire immune system and cause other horrible side effects.

I seem to read that sunlight or UVB light would not have this type of limitation.

I would say that without a doubt that what I have been doing has been working for me. I only have been going to the bathroom once a day pretty much every day and eating some foods that I would normally pay a penalty for. I have not achieved a return to my pre sickness self, but I do feel that I am exceptionally close. With each day my condition has seemed to improve. I hope it continues and does not degrade or plateau before I would reach pre sickness levels.

Thanks for the vitamin K2 info. It is crazy how you start to really deep dive into these studies only to find out all this conflicting information.

 

[caledon]

I would also add that I read more about washing vitamin D off your skin. It seems that it is made below your skin and the guy who is pushing that idea has had some credibility issues. I would assume that this claim most likely is not true.

 

[Beach]

I'm jealous! It was cold and rainy here most of the weekend. The sun made few appearances. When I'm in Florida where I stay is a short walk away from a beach, hence the name I signed up for. I was at the beach at the time thinking of names when signing up for this sight. Looking around it came down to choosing the names of Crabs or Beach. I was going to use crabs as many were running around everywhere I remember, but figure if I did some might believe I was at the wrong self help sight. :ybiggrin:

Wonder that you are feeling better! Hope the improved stomach continues.

I am doing well here of late also, with the gut along with greatly improved energy levels, and lack of muscle fatigue. My improvement is likely more diet related, but have noticed that sun exposure does make me feel better and upbeat.

 

[caledon]

Beach that is awesome news that you are feeling better!

For myself it is not a story book ending.

I kept getting better all the way until the 3rd week. So much so that I was able to eat foods that I could not have eaten before and I had no symptoms.

Then one day it all fell apart for me. Not sure what happened. Maybe it was eating the super bad foods, maybe it was the fact that I had a stressful life event and got no sleep.

As a result I got somewhat depressed and stopped tanning, which was a lot of work and I basically backslid all the way to where I was before.

I guess this would show that taking the cofactor vitamins alone was not enough.

I had to go back onto my more restrictive diet although in recent days I have been feeling very well and have been going off it again.

I have been getting sun, but much less now due to my work and not being able to leave to tan during lunch. It is amazing how damaging my job seems to be to my health. I guess on the flip side I get paid a lot and all the supplements I can afford to take are probably from my job.

I am also experimenting with getting magnesium a natural way (almond butter and spinach) rather than a pill because I read that you can OD using a pill.

Also went to my GI and asked him to test me for vitamin D. He refused saying he would have no way to treat low vitamin D. I did get him to agree to test for B12.

Also I read somewhere that coconut oil kills MAP. I may experiment with putting that into my diet.

 

[Beach]

caledon, sorry to read that the sun exposure idea hasn't worked out as hoped! I suspect you are likely right with your approach though. A combination of diet and improved ability to fight possibly an infection/ improved gut flora might do the trick.

If you have a chance you might read Dr. Hunter's book. His often successful approach to treating IBD conditions, Crohn's in particular, is with diet mainly and drug medications when necessary. His guess is that the condition is brought about by food triggers and a disturbed gut flora/ infection. His sight and books can be seen at:

http://crohns.org.uk/

It isn't and IBD condition, but along similar lines there has been some interesting observation articles about celiac disease being brought about from a disturbed gut flora:

"Study: Celiac disease associated with prior antibiotic use"

http://www.perskyfarms.com/phpBB2/viewtopic.php?t=18531

&

"Who Has the Guts for Gluten?"

http://www.crohnsforum.com/showthread.php?t=47999

From what I've seen that happened from time to time, a physician not being interested in testing a patients vitamin D levels. It is possible to test on your own. I've used home vitamin D kits in the past. They are for sale at many places, but I've bought from these locations before:

https://shop.trackyourplaque.com/Product/2/vitamin-d-test.aspx

&

https://vitamindcouncil.zrtlab.com/

Your doctor should be willing to test for elevated calcium levels, which is rare but can happen when to much vitamin D is taken.

Well, I've gone a little overboard with the links! I better quite while I can. I keep rolling along doing well with my diet, and improved gut. Last night was first time I've been mildly ill in a good long while. I have myself to blame I believe. The bag of almonds looked delicious at the time, but I'm afraid are to rich in fiber at this point.

 

[caledon]

Just checking in, I do not have much to report.

I was experimenting with getting magnesium a natural way using almond butter. This resulted in a slow decline in my my health until I was going to the bathroom 4-5 times a day. After I realized what was happening I stopped, but it took me weeks to realize what was going on and weeks to recover. Why would nuts make me so sick? It must be a clue as to what is wrong with me.

Now I am experimenting with getting magnesium and zinc with Quinoa. This was something I stumbled into because my girlfriend was making it for me. It looked like rice to me and I would have thought that it would be bad for me, but so far it seems to really agree with me super well. I guess it is a seed instead of a grain. Later on I looked it up and realized it was a magnesium/zinc super food. Hopefully this works better than Almond butter.

My job has died down and I am ready to start going home from work and tanning again.

Currently I am feeling pretty good (but not as good as before I got sick), going to the bathroom once or twice a day.

I stopped taking Lialda at this point in time because I need to take a blood test to make sure my liver is not messed up and I ran out of the prescription. So far I have not noticed any downsides from not taking it, but my experience with Almond butter showed me that you can have a really slow decline so I will be trying to watch out.

Also when I was tanning I ate much more breads (subway) and took an extra Florestor while I was home. I have been trying to do that lately as well and it actually seems to have a positive effect. Who knows, maybe this was the real reason I got better and the sun had nothing to do with it?

Thanks for all of those links beach!

 

[caledon]

I have have been experiencing soreness in my left side for about a year now. I am thinking this is actually intestine pain I am feeling and am trying to get my doctors to check it out. Both my primary and my gastro have follow up appointments later this month.

Gastro was not happy I stopped Lialda, I told him I would go back on it, but I have not. As there was a study that Lialda type products kill MAP it probably is not a bad idea to start again. I have not noticed a decline since going off it.

Symptom wise things have improved and many days I feel like I am pre sickness when going to the bathroom and I only go once a day.

I started taking cinnamon because I read it helps with TB. I take water extract because there is a bad component to cinnamon that can hurt your liver that is not supposed to be water soluble.

I read that Vitamin A in retinal form negates Vitamin D. There was a study that said colon cancer was higher. I looked at my crappy Centrum vitamin and of course it has a pretty high dose of retinal. I have ordered some super expensive vitamin from New Zealand that only has beta carotene. Hopefully this will help me.

I have also come to realize that even with all this stuff that there are certain foods that just destroy me with onions being #1. I searched for a diet that matched my findings and it looks like the FODMAP diet has all of the foods I found to be bad. it also has yellow foods that cannot be eaten in large quantities that are probably bad, but I did not realize it. I am going to try out this diet and see where it takes me.

It seems that eating something like an onion causes massive bacteria growth which in term causes inflammation. Why would the root cause for this be? MAP weakening my immune system? Auto immune? Who knows. For now I am going to try and avoid that response in my body and see where it takes me.

Happy holidays!!!!

 

[mccindy]

The mycobaterium family is actually quite large, and it's not that likely that exposure to one would cause any other type of illness. The mycobacterium that causes leprosy is actually quite difficult to fall victim to; up to 95% of people exposed to it do not contract the disease. The mycobacterium that causes tuberculosis, on the other hand, is quite dangerous and exposure can easily cause TB. TB also does not affect only the lungs but can affect many other parts of the body.
There really is no scientific proof at this point that MAC or MAP bacteria are causing Crohn's disease. Given the prevalence of IBD in developed countries, as opposed to those without proper sanitation or clean water, it's more likely not the case. Since diet is the radical difference between first and third world countries, it's very likely that that change from eating mostly meat and vegetables, and healthy amounts of saturated fats, to eating mostly grains and processed foods infused with high-fructose corn syrup is a contributing factor to the increasing numbers of diagnosed IBD patients.

 

[carrollco]

McCindy: Good point regarding developing countries. Never considered it.

Louann Carroll
www.louanncarroll.com
Crohn's survivor and advocate
Trying the natural method that's not working so well right now. I DO NOT recommend this to anyone.

 

[caledon]

You are right that there is no real proof that MAP has anything to do with Crohns.

I watched an interesting talk by a guy who said that when you are exposed to TB you get an immunity to MAP. Then he showed that there is an inverse relationship between countries with TB (undeveloped) and countries with IBD (developed). I thought it was an interesting explanation.

In Crohns there is evidence that your body is having a reduced immune response. I read that with MAP it infects your white blood cells and messes their ability to function and almost has an aids like effect. This made me think as well that there might be a link.

Also many of the treatments for IBD have also been shown to inhibit MAP even mesalamine.

Anyways those are some of the ideas that was what lead me down this path.

I will say that getting sun exposure and taking vitamin D cofactors did seem to have a noticeable positive effect, but there is no way to know for sure if that has anything to do with MAP.

 

[UnXmas]

There really is no scientific proof at this point that MAC or MAP bacteria are causing Crohn's disease. Given the prevalence of IBD in developed countries, as opposed to those without proper sanitation or clean water, it's more likely not the case. Since diet is the radical difference between first and third world countries, it's very likely that that change from eating mostly meat and vegetables, and healthy amounts of saturated fats, to eating mostly grains and processed foods infused with high-fructose corn syrup is a contributing factor to the increasing numbers of diagnosed IBD patients.

Could it be that IBD is going undiagnosed in developing countries?

 

[mccindy]

There have been studies done exploring that very idea; what they found is that there really are not very many incidences of IBD in third-world countries. Medical research facilities that are treating the AIDS populations and other diseases there, as well as the overall WHO organization, have done studies since the incidence of IBD have skyrocketed in first-world countries in the last fifty years. This concurs with the timline since the increase of processed foods, as well as a grain-heavy diet and the elimination of natural foods and saturated fats in the first-world diet have occurred.

 

[caledon]

Just wanted to provide an update.

During the winter, even in Southern California it was hard to get sunlight and my job picked up where I did not really have time to go outside so I cut back on this.

However I am going to try and pick this up again.
-Currently off Lialda (not on any medications)
-Stopped taking cinnamon (did not really see to do anything)
-Stopped taking vitamin D. I was taking a high dose and the idea that supplement D acts as a steroid and could have an opposite effect made me decide to see if I could get the D from sunlight alone.
-I am on a vitamin that contains only natural vitamin A no retinal.

Current health:
There are a number of things I cannot eat (onions, nuts etc).
If I stay on my diet I go to the bathroom once and it is like I am pre sickness.
I have had a pain in my side for almost a year now. Currently it is barely noticeable, but I am not numb like I am on my other side.

 

[D Bergy]

The onion thing is interesting to me. I was not able to eat two things in the past, onions and malt. I reasoned the malt thing was because it was so packed with gluton.

I never figured out why onions bothered me, but I speculated it could be that it was possible that because MAP secretes a sulphur like compound the body saw similar compounds from onions, it responded badly to its presence.

Just a wild hypothesis, but the fact is I now can eat onions again and I have also been eliminating MAP using an alternative treatment.

Possibly, you could use the onion response as a measure of effectiveness?

Just a thought.

Good luck.

Dan.

 

[Trevor]

D Bergy - super interesting idea. Onions are often cited as a problem food for some but not others with IBD/gastro-issues.

 

[caledon]

I always thought that onions, nuts and beans caused me trouble because they make it to the large intestine more intact than other foods.

I imagine that this causes bacteria growth (I hear for onions especially) and I would guess one of these things happen:
1) immune system sees bacteria that eats these food as the enemy and attacks causing inflammation.
2) immune system is too weak (maybe due to MAP or other) and cannot fight off bacteria. As a last resort inflammation is triggered.

Dan what was your alternative treatment that worked?