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09-20-2013, 10:55 PM   #1
vongoh
 
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vongoh's LDN diary

I just received a prescription for LDN from a naturopath today. I am also gaining access to high quality THC / CBD cannabis oil and will be doing both, starting in the coming week

So going to take this opportunity to document my experiences here on this thread.

I've never done a background profile on here or posted much to date, so here's the outline. I'll try and be brief and to the point but there's a certain amount of context that is important:

Diagnosed in Fall of '11 with Ulcerative Colitis after experiencing a strange constipation, blood in the stool and mucus in the toilet. This first GI was rude and gave me almost no information other than throwing some chemicals my way (Pentasa).

When I was already into a severe flare-up that ended up lasting 4 or 5 months, dropped almost 40 pounds, malnourished ... went to another GI that happened to notice that the perianal abscesses that I had been dealing with off and on over the past 15 years?

Yeah: that would be an indication of Crohns - an indication that the first guy completely failed to see (even though I told him about the abscesses, and he was staring right at my ass when he did the colonoscopy). So the diagnosis become Fistulizing Crohn's Colitis - the abscesses had always put me in the hospital for drainage and anti-biotics, but no-one had ever suggested the connection.

At diagnosis I immediately went on a pretty strict Paleo Diet and I've been on it since I've tried a number of supplements and dietary tweaks - including pro-biotics, fish oil (now coconut oil) and turmeric as regular part of my daily diet.

But I soon discovered that diet alone will not maintain or keep me in remission on it's own in my case. Going off the Pentasa temporarily, immediately put me in a flare-up at one point .... and not keeping away from my trigger foods while on Pentasa would not be enough either, because I tried it both ways. I need both (which this Medical Industrial Complex is in complete delusional denial about, causing suffering for countless thousands or millions .. but I digress)

I've had 4 major flare-ups (lasting 3 or more weeks minimum) that all ended up with hospital trips to operate on the fistulas in the past 2 years since I was diagnosed. Because of my dietary care of my body I have been able to keep myself in remission the rest of the time with just Pentasa until now, and that's most of the time.

Unless I accidentally have dairy, which is Kryptonite for me -- it hard slams me into a flareup within 24 hours. Massive lactose reaction which leads to swelling, blood, fistulas go active, constipation for weeks etc etc u know the drill.

So this last time this is what happened - about 8 weeks ago. The dairy triggered the flare-up, I went to the GI to get flagyl and cipro to get pro-active about the perianal absess and fistula tracking I knew would be coming.

They ordered an MRI and I had the test done. Then I did not hear from them about the results, and when I started calling every day to find out, they did not return my calls.

When they finally got back to me, the receptionist says ".. we're seeing some complex fistula tracking, so we want to get you to a new Jons Hopkins trained Dr. sometime in the next few months" --- not telling me what that meant.

I looked up complex fistula tracking online and - no, this is not good news. Meanwhile I can feel a new abscess forming on my other buttcheeck. And I still have no breakdown on what these results mean from my GI directly (is there no ethics or law about giving timely results in a potentially critical situation? Again I digress ..)

After practically begging to talk to my surgeon to do this operation before I get driven down to the emergency room with some random Dr that might cut me wrong - I finally contacted him and he ended up doing more work on both the first fistula, and the new one on the left buttcheek. They kept me in the hospital for 5 days after the op, on intravenous anti-biotics to keep these fistulas down.

When I finally got the MRI results - sure enough, this showed a few fistulas tracking down around my colon. My diagnosis is now "Complex Fistulizing Crohns Colitis". That's the bad news.

The good news is as of this week things have finally stabilized and I'm in going into remission, bowels almost back to normal, fistulas drying up and I can walk again and sit down to work behind the laptop and etc.

The corporate drug dispensers we now call 'doctors' have offered me Humira as the next logical step. I'm really not OK with that. I have a month to go before my appointment with the Jon Hopkins guru - who is most likely going to try to convince me that there's no other option than to go on a chemical concoction that might end up killing me through lymphoma and / or other infection, and has a 30% chance it will work at all, and less than 30% it will keep working more than a year if it does.

Also - I am pretty firmly convinced now that their paradigm of using emergency anti-biotics to stop the fistula progress is digging a deeper hole. One of the root causes of IBD is gut dysbiosis:

Something goes wrong with the microbiota in the gut. The population is compromised - it is out of balance and the proper functioning of that system is fundamental to the immune system. Antibiotics can kill of the immediate problem of bad pathogens growing out of control, but they also kill off much of the beneficial populations - the safeguards against these bad pathogens and this allows them get out of control more easily in the future.

I believe this is why many people that do not respond to medications after a while get dragged down and get to the point where they are cutting our intestines out - its because their paradigm of treatment is ultimately digging a deeper and deeper hole for the patient until they finally run out of options.

So I decided to contact a reputable integrative medicine center in my area. I told them over the phone that I was interested in LDN - as one of the final choice I have left before biologics - and made sure they had someone on staff that could prescribe it if they thought it was in my best interest.

Sure enough, they did. So I will be filling the prescription this week and reporting on my progress over the next month before I see Jons Hopkins guru Doctor

They will be helping me address the gut dysbiosis in ways that go beyond simply taking high quality, high potency probiotics. I was confident in talking to him today that he has a good game plan for doing so.

Additionally, I will be taking regular doses of quality THC/CBD RSO oil as supplies will permit. Unfortunately I will not doing an empirical study doing them one at a time, so it will not be easy to tell which of the treatments or both are working.

But I will definitely be able to give some insight going forward for anyone who is interested. I know there are a lot of sick people out there that are very excited and hopeful about both of these treatments so hopefully I will have some good new for you.

Last edited by DustyKat; 09-21-2013 at 03:52 PM.
09-21-2013, 01:02 AM   #2
Wendles
 
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I just received a prescription for LDN from a naturopath today. I am also gaining access to high quality THC / CBD cannabis oil and will be doing both, starting in the coming week

So going to take this opportunity to document my experiences here on this thread.

I've never done a background profile on here or posted much to date, so here's the outline. I'll try and be brief and to the point but there's a certain amount of context that is important:

Diagnosed in Fall of '11 with Ulcerative Colitis after experiencing a strange constipation, blood in the stool and mucus in the toilet. This first GI was rude and gave me almost no information other than throwing some chemicals my way (Pentasa).

When I was already into a severe flare-up that ended up lasting 4 or 5 months, dropped almost 40 pounds, malnourished ... went to another GI that happened to notice that the perianal abscesses that I had been dealing with off and on over the past 15 years?

Yeah: that would be an indication of Crohns - an indication that the first guy completely failed to see (even though I told him about the abscesses, and he was staring right at my ass when he did the colonoscopy). So the diagnosis become Fistulizing Crohn's Colitis - the abscesses had always put me in the hospital for drainage and anti-biotics, but no-one had ever suggested the connection.

At diagnosis I immediately went on a pretty strict Paleo Diet and I've been on it since I've tried a number of supplements and dietary tweaks - including pro-biotics, fish oil (now coconut oil) and turmeric as regular part of my daily diet.

But I soon discovered that diet alone will not maintain or keep me in remission on it's own in my case. Going off the Pentasa temporarily, immediately put me in a flare-up at one point .... and not keeping away from my trigger foods while on Pentasa would not be enough either, because I tried it both ways. I need both (which this Medical Industrial Complex is in complete delusional denial about, causing suffering for countless thousands or millions .. but I digress)

I've had 4 major flare-ups (lasting 3 or more weeks minimum) that all ended up with hospital trips to operate on the fistulas in the past 2 years since I was diagnosed. Because of my dietary care of my body I have been able to keep myself in remission the rest of the time with just Pentasa until now, and that's most of the time.

Unless I accidentally have dairy, which is Kryptonite for me -- it hard slams me into a flareup within 24 hours. Massive lactose reaction which leads to swelling, blood, fistulas go active, constipation for weeks etc etc u know the drill.

So this last time this is what happened - about 8 weeks ago. The dairy triggered the flare-up, I went to the GI to get flagyl and cipro to get pro-active about the perianal absess and fistula tracking I knew would be coming.

They ordered an MRI and I had the test done. Then I did not hear from them about the results, and when I started calling every day to find out, they did not return my calls.

When they finally got back to me, the receptionist says ".. we're seeing some complex fistula tracking, so we want to get you to a new Jons Hopkins trained Dr. sometime in the next few months" --- not telling me what that meant.

I looked up complex fistula tracking online and - no, this is not good news. Meanwhile I can feel a new abscess forming on my other buttcheeck. And I still have no breakdown on what these results mean from my GI directly (is there no ethics or law about giving timely results in a potentially critical situation? Again I digress ..)

After practically begging to talk to my surgeon to do this operation before I get driven down to the emergency room with some random Dr that might cut me wrong - I finally contacted him and he ended up doing more work on both the first fistula, and the new one on the left buttcheek. They kept me in the hospital for 5 days after the op, on intravenous anti-biotics to keep these fistulas down.

When I finally got the MRI results - sure enough, this showed a few fistulas tracking down around my colon. My diagnosis is now "Complex Fistulizing Crohns Colitis". That's the bad news.

The good news is as of this week things have finally stabilized and I'm in going into remission, bowels almost back to normal, fistulas drying up and I can walk again and sit down to work behind the laptop and etc.

The corporate drug dispensers we now call 'doctors' have offered me Humira as the next logical step. I'm really not OK with that. I have a month to go before my appointment with the Jon Hopkins guru - who is most likely going to try to convince me that there's no other option than to go on a chemical concoction that might end up killing me through lymphoma and / or other infection, and has a 30% chance it will work at all, and less than 30% it will keep working more than a year if it does.

Also - I am pretty firmly convinced now that their paradigm of using emergency anti-biotics to stop the fistula progress is digging a deeper hole. One of the root causes of IBD is gut dysbiosis:

Something goes wrong with the microbiota in the gut. The population is compromised - it is out of balance and the proper functioning of that system is fundamental to the immune system. Antibiotics can kill of the immediate problem of bad pathogens growing out of control, but they also kill off much of the beneficial populations - the safeguards against these bad pathogens and this allows them get out of control more easily in the future.

I believe this is why many people that do not respond to medications after a while get dragged down and get to the point where they are cutting our intestines out - its because their paradigm of treatment is ultimately digging a deeper and deeper hole for the patient until they finally run out of options.

So I decided to contact a reputable integrative medicine center in my area. I told them over the phone that I was interested in LDN - as one of the final choice I have left before biologics - and made sure they had someone on staff that could prescribe it if they thought it was in my best interest.

Sure enough, they did. So I will be filling the prescription this week and reporting on my progress over the next month before I see Jons Hopkins guru Doctor

They will be helping me address the gut dysbiosis in ways that go beyond simply taking high quality, high potency probiotics. I was confident in talking to him today that he has a good game plan for doing so.

Additionally, I will be taking regular doses of quality THC/CBD RSO oil as supplies will permit. Unfortunately I will not doing an empirical study doing them one at a time, so it will not be easy to tell which of the treatments or both are working.

But I will definitely be able to give some insight going forward for anyone who is interested. I know there are a lot of sick people out there that are very excited and hopeful about both of these treatments so hopefully I will have some good new for you.
Hi vongoh, will be waiting in anticipation for your diary on how things go. I really do wish you the best of luck and thank you for sharing this experience with us .
Good luck and best wishes Wendy
__________________
Mum to trent aged 13,
diagnosed With Crohns may 2013
currently on imuran 75 mg bumped up to 82.5mg
LDN 3mg
Probiotic
Iron
A temp stoma after a horrible abcess which has him eating everything in sight
09-21-2013, 08:14 AM   #3
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I just spoke to Skip at Skip's pharmacy and he said there is no problem with continuing medical marijuana while taking LDN. They involve different systems in the body.
This is exactly what I have gathered from my own research. I'll be doing both (see above) and am going to report on progress and answer any questions people might have going forward.

Good luck to you guys, fingers crossed this will be the right path for all of us.
09-23-2013, 10:08 AM   #4
mnsun
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I agree wholeheartedly on your opinions above. I had, perhaps, beginnings of fistulas which stopped progressing as perianal "tags" once I quit sugars/refined grains and got my omega3/probiotics in check.

If I lived in a compassionate state, I would definitely go with some mixed, CBD dominant, canna-oil like you have. What is RSO?

How much coconut oil you taking? Is 5 grams the therapeutic dose? I ocassionally take a few tablespoons for all the benefits therein (anti-fungal/brain boosting/energy), but I never continually take 5 grams, though I should for a few weeks to see what happens. Oil pulling seems like a good dental technique I haven't tried yet...

Best of luck. Please update.
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09-23-2013, 03:00 PM   #5
vongoh
 
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If I lived in a compassionate state, I would definitely go with some mixed, CBD dominant, canna-oil like you have. What is RSO?
RSO is shorthand for 'Rick Simpson Oil' - this is oil distilled from the buds of the plant using a solvent - usually 99.9% isopropyl alcohol or 95% everclear grain spirits. The solvent is then boiled off to leave all of the beneficial cannabinoids and supporting compounds in a highly concentrated medicinal
oil.

Because the oil in its raw from has some absorption issues getting into the bloodstream - in addition to any absorption issues that comes with IBD -the RSO is then best mixed with coconut oil or other medium chain oil (for enhanced absorption) - as well as lechitin (for potency and absorption).

This is then heated in the oven in a pyrex dish to finish the process. That's the outline of it, about as far as I would want to go in this thread. Don't want to go too OT here - but it is important I think to set terms so people know what we are talking about.

RSO is a very specific way of distilling strong buds using solvent. Note that the medium chain oil and emulsifier are added to RSO specifically to aid in digestive absorption and efficiency: the RSO is the raw oil.

How much coconut oil you taking? Is 5 grams the therapeutic dose? I ocassionally take a few tablespoons for all the benefits therein (anti-fungal/brain boosting/energy), but I never continually take 5 grams, though I should for a few weeks to see what happens.
I end up ingesting at least 2 tbps of coconut oil per day in vege juices (I juice raw organic veges, coconut oil and turmeric/pepper, and L-Glutamine at least once if not twice a day) and in cooking.

During my flareups - as soon as I feel it coming and know it's not going to go away easy, I immediately reduce or eliminate most solid food and go on an enteric diet using Absorb Plus (search on that if curious). Its a highly refined nutrient powder forumulated for IBD.

And I put 1 tbsp of coconut oil in that per serving -- ends up being 4 or 5 tbsp of coco oil per day when Im in a flareup. It sure is healthy, I can feel it nourishing my body when I'm sick.

But honestly I have not come acrost any data or strong anecdotal evidence that coconut oil influences IBD all that much other than as an excellent general anti-inflammatory as well as all of the other beneficial properties it has. Not enough data to say either way.

I get Omega 3's from flax oil, fish oil (more expensive, some contamination concerns) and real fish.

And I also like the taste of coconut oil So its all good.

Last edited by vongoh; 09-23-2013 at 03:23 PM.
09-23-2013, 04:26 PM   #6
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LDN Update:

I dropped off the prescription for LDN at the local compounding pharmacy the naturopath recommended. He says he uses them all the time and that they definitely know what they are doing. So I will pick it up tomorrow and have it ready to go.

I had my appointment this morning with the Jons Hopkins trained GI and research fellow this morning (they gave me a last minute appt when someone called in). We talked for about a half hour and she was very intelligent and well versed in that whole school of treatment and thought. She also had the light of humanity in her eyes: shes a good person and is sincerely looking to help people I can tell.

As predicted her recommendation was for "aggressive" biologics (Humira) and likely concurrent 6-MP. I told her I had serious reservations about doing this and she understands why.

After listening to her rationale and also covering some more technical aspects of Crohns and current state of IBD treatment / research - I told her that I have a prescription for LDN. I said that I consider biologics/6-MP to be "high risk, shaky / unreliable reward" and that I need to try a "low risk / potentially huge reward" solution first.

She didn't really know anything about it. She told me that she knew it was not FDA approved, and that she didn't have enough data to comment on it. In response I told her it was approved for off-label, has been used for some time and that it has helped a lot of people. I also told her I didn't trust the FDA and do not consider their approval or disapproval of any particular treatment to be credible. She kind of chuckled at that and didn't exactly go out of her way to defend them ...

Of course I said nothing about the canna oil.

So we left the Humira and 6-MP on the shelf while I do the LDN. They will be doing a new colonoscopy and blood series on me soon which will give me a pretty full picture of what is going on inside of me as a benchmark going forward. I will have a new CDAI index number (which I never received before) to baseline any progress against as time goes by.
09-24-2013, 10:49 AM   #7
ce1210
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I agree with you wholeheartedly and I am planning to talk to my doctor about LDN on Thursday...he prescribed me to 6-mp a month ago and I just couldn't take it. Funny thing is I called them back to tell them I wasn't going to take it and to see about getting a prescription for an antibiotic bc the Entocort they had me on caused me to get a skin infection and couldn't get them to call me back so I guess its standard procedure to prescribe someone to a chemo drug that can cause lymphoma, hair loss, liver problems, pancreatitis, low white/red blood cell counts, TB, etc and then refuse to return their phone calls for a month and not even wonder why they hadn't shown up for their blood tests....
09-24-2013, 10:49 AM   #8
ce1210
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will def be following this diary by the way!
09-26-2013, 09:13 PM   #9
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vongoh, I'm wishing you loads of good wishes and happy thoughts. We are in a similar boat, only it's my 15 year old daughter who has crohn's. We started with the cannabis extracts about 2 weeks ago, I wish I knew more about the oils. I think they are more potent. And we go on Monday, hopefully for the LDN script. Like you we can't wait to see which one works, we just need something to work. So will do both at the same time. I hope you will post everything possible about your experience. My big concern is that I've heard your symptoms can get worse. Hope that's not the case.
09-26-2013, 11:19 PM   #10
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vongoh, I'm wishing you loads of good wishes and happy thoughts. We are in a similar boat, only it's my 15 year old daughter who has crohn's. We started with the cannabis extracts about 2 weeks ago, I wish I knew more about the oils. I think they are more potent. And we go on Monday, hopefully for the LDN script. Like you we can't wait to see which one works, we just need something to work. So will do both at the same time. I hope you will post everything possible about your experience. My big concern is that I've heard your symptoms can get worse. Hope that's not the case.
Thanks! I picked up the script for LDN on Tuesday - this is my third day taking it. Or to be more precise: 3rd night.

I acquired a new batch of CBD/THC canna oil the same day. Supply is somewhat limited so this batch is diluted with more coconut oil to stretch it. This plus the fact that THC affects are tempered by the equal CBD, so any associated feelings are mild and enjoyable.

First take on LDN:

I dream pretty intensely every night anyway lately. So the first night I dont recall anything extra intense. The next day I definitely felt a clarity that is a whole lot like the clarity you get after a good workout at the gym.

Second night (last night) I did notice a difference in my dreams. I cant express exactly how but I did. Then today that clear after workout feeling was more pronounced.

The thing about taking two non-toxic substances that each enhance two of the fundamental biochemical systems (endocannabiods and endorphins) in the body at the same time is ...

It makes you feel pretty good. And not in a 'hey its party time lets get crazy' way. Its more of a 'senses are alive, today is a great day, live in the moment and get stuff done' kind of way.

The fact that in doing this I might be literally saving my life from unknown suffering, and then passing this information on to countless other people that suffer as bad as I have?

I would use the word 'Priceless' but some credit card company killed that joke a long time ago.

About the initial kick from LDN making the symptoms spike:

This is something the canna oil should help. That's one of the reasons I waited to start using the canna oil on the same day with LDN.

The cannabis oil by itself is putting some people in remission and keeping them there. So if the theory is correct - with this oil being prepared correctly (it is) - and with me dosing at sufficient concentrations (still fine tuning that here).... it should act as a buffer until the LDN really starts to kick in.
09-27-2013, 09:07 AM   #11
ce1210
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I wish cannabis oil was easier to come by...its harder than getting moonshine in the 1930's in my area. I got my GI doc to prescribe LDN yesterday and he basically told me that from what he understands of CD that LDN should not work. He prescribed it anyway saying that he thought I was potentially putting myself in a flare but he would rather put me on LDN and hope that it works than me take nothing at all. So my experience with LDN begins tonight. I have managed to locate some cannabis oil but only in small amounts for a very high price so I will be using high grade cannabis by way of vaporization or edibles to supplement the oil. Also gonna be trying very high doses of probiotics on myself during this cause I figure it cant hurt....
09-27-2013, 01:33 PM   #12
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I got my GI doc to prescribe LDN yesterday and he basically told me that from what he understands of CD that LDN should not work. He prescribed it anyway saying that he thought I was potentially putting myself in a flare but he would rather put me on LDN and hope that it works than me take nothing at all. So my experience with LDN begins tonight.
The problem is that what many of these doctors 'understand' about IBD is limited by their training - which is tainted all the way through by a bias engineered by big pharma money and financial interests at the academic and regulatory level.

So, many of these doctors are flat out wrong. Not about everything. But about the central role of gut dysbiosis in IBD, and about exactly how this imbalance of the micro-flora interacts with the immune system and how to correct it?:

They are tragically and sadly mistaken. We only need to look at the history of the human race to see, that at any given point in history the prevailing views of science - the 'common knowledge' and basic assumptions the scientific establishment operate under - is held with almost religious fervor ...

And then one day it suddenly changes, and we find out they were wrong. About the flat earth. About the role of germs and disease. About cannabis. About any number of things.

They are wrong about dark matter and dark energy right now in astrophysics. They are wrong about the safety of genetically modifying food. And they are wrong about IBD imo.

I have managed to locate some cannabis oil but only in small amounts for a very high price so I will be using high grade cannabis by way of vaporization or edibles to supplement the oil. Also gonna be trying very high doses of probiotics on myself during this cause I figure it cant hurt....
Probiotics and curing the gut dysbiosis are also central to my plan - which again is:

- Addressing gut dysbiosis (includes the probiotics)

- LDN

- high quality CBD/THC RSO canna oil

+ basic whole foods / Paleo diet and supporting supplementation

Probiotics need to be refrigerated and high quality. So I go to local health stores and buy them over the counter. I had Natren shipped here at one time but that gets expensive and is more of a hassle overall.

Two brands that I have confidence in through researching boards like this and checking them out are:

- Natren Healthy Trinity

- Utimate Flora (after this last flareup I am taking either their 80 billion or 50 billion products depending on availability
09-27-2013, 03:57 PM   #13
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Here, MM was available, with prescription, in one of two ways. If you had a valid script from a doctor... you could a.) purchase from the one, approved licensed provider OR, if that was outside your price range/budget, you could opt to go with b.) grow you own.

Regretably, a group of at least 6 co-conspirators came up with a scheme to take advantage of the law. Police investigated, charges were laid, and convictions obtained.

That led to the 'new' law... with a valid script, you can now purchase from the licensed provider. If you can't afford it, there are no other legal options available anymore. For some people, this is castastrophic. If you need MM for your disease, then you don't have to justify to anyone OTHER than the professional prescribing it. But, if you don't, why 'jeopardize' it for those who do. There are multitudes of recreational sources.
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Low Dose Naltrexone Nov 2007 - May 2014
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09-27-2013, 05:45 PM   #14
ce1210
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Ha nothing but "recreational sources" where I live...I plan to move to Colorado or California sometime in the near future

I have VSL#3 probiotics that I just got today its says I can take up to 8 a day for a month and they have 112.5 Billion per capsule so that would be 1000 billion or a trillion I guess. I have been using garden of life probiotics the VSL#3 is only carried in some pharmacies and the one that I had to go to to get the LDN had the VSL so I thought I'd try it. It says its a "medical food" and you have to have a prescription to get the double strength version it was $55 for 60 capsules.

I havent read into paleo diet too much I have stopped eating red meat, gluten, lactose, casein, raw nuts, raw vegetables (unless juiced) and I have 3 liquid meals a day (smoothies) and 1 solid meal (dinner between 5 and 8) and for solid meals i cook fish, turkey, chicken, and vegetables. I have also been using ginger and udo's oil in all my smoothies and use coconut oil as they are supposed to be anti inflammatory and healthy stuff blueberries, spinach,etc all seems to be helping

Excited to be tapering off Entocort (not to bad besides a skin infection and constant headaches) and starting LDN...
09-27-2013, 08:09 PM   #15
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I have VSL#3 probiotics that I just got today its says I can take up to 8 a day for a month and they have 112.5 Billion per capsule so that would be 1000 billion or a trillion I guess. I have been using garden of life probiotics the VSL#3 is only carried in some pharmacies and the one that I had to go to to get the LDN had the VSL
VSL3 is the only pro-biotic brand I've seen that was used in studies testing the efficacy, and it tested pretty positive, helped a lot of people apparently. I think its one of the only brands insurance will cover as a result. Did your insurance cover anything on that?

I havent read into paleo diet too much I have stopped eating red meat, gluten, lactose, casein, raw nuts, raw vegetables (unless juiced) and I have 3 liquid meals a day (smoothies) and 1 solid meal (dinner between 5 and 8) and for solid meals i cook fish, turkey, chicken, and vegetables. I have also been using ginger and udo's oil in all my smoothies and use coconut oil as they are supposed to be anti inflammatory and healthy stuff blueberries, spinach,etc all seems to be helping
Sounds like you're on the right track, what you are doing is very similar to Paleo and SCD ... whole foods, no factory foods. Keep it real.

'Stay away from corn soy wheat dairy sugars and other toxins of any kind' ..

That seems to sum up the backbone of what works best for IBD. Then people adjust from there based on what they like to eat, tolerance and any new data that comes along.

I strongly believe that people with IBD that go to far off that basic backbone are causing a lot of misery for themselves.

GMO corn soy wheat ... dairy ... sugars .. other industrial toxins... bad bacteria love that stuff. They are partyin' hard down there when crohns people don't give them the kick to the curb ...
10-01-2013, 04:00 PM   #16
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How's it going. We got our LDN and will start over the weekend. We also tried some new therapies: Hyperbaric oxygen and frequency specific microcurrent. They are also suggesting reflexology. We were on 5 mgs of prednisone, they suggested taking cortef for a while, they claim it doesn't have as many side effects as the pred. And adding more supplements. I'll let you know which ones if you want to know. They also strongly said to stay away from the GMO's.
10-01-2013, 05:43 PM   #17
vongoh
 
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How's it going. We got our LDN and will start over the weekend. We also tried some new therapies: Hyperbaric oxygen and frequency specific microcurrent. They are also suggesting reflexology. We were on 5 mgs of prednisone, they suggested taking cortef for a while, they claim it doesn't have as many side effects as the pred. And adding more supplements. I'll let you know which ones if you want to know. They also strongly said to stay away from the GMO's.
Great! I'm glad you guys worked that out. So far I'm doing good. My cycle with this disease follows a very clear pattern so far:

When I am in clinical remission, I get steadily better and stronger as time goes by with minimal symptoms. My fistulas go inactive and - other than rubber bands hanging down from the setons that are a minor annoyance at best.

If I stay on a Paleo/Whole food diet - no grains but brown rice, minimal sugar (of any kind, GMO beets being the worst and some minimal real fruit fructose on the more acceptable kind - and NO diary products of any kind -
with Pentasa - historically I stay basically normal and productive.

The issue with me is that if I A) Have any dairy or lactose containing product, and/or B) Slip up and have too much complex carbs, starches, and sugar that builds up in my system ... everything goes hardcore active at once, including the fistulas which then continue their progress through my system. Then things get really bad.

ie. I am kind of all the way OFF (in 'remission'), or all the way ON (flare). I don't have the kind of middle ground, grey area low level symptoms all the time the way a lot of other people do -- which is a blessing. Its just that when it goes bad for me, I exhibit a more complex and potentially fatal form of the disease - that's the curse.

Since I was released from the hospital three weeks ago, following my normal flare-up protocols and lots of anti-biotics to deal with the fistula - I was already achieving remission (as defined above) *before* the LDN and canna oil.

So, since I did not start the LDN and canna while I was still in the last flare - I cant speak to exactly how much influence either or both are having in healing me as of yet. Its impossible to say.

I will say though - that since starting the LDN last week, that I feel amazing during the day! The extra endorphins feel just like the refreshed, alert and relaxed feeling you get right after a good workout at the gym ... *without* the sweaty flushed sore muscles The sensation is the same though.
03-19-2014, 10:40 PM   #18
vongoh
 
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Hi all. It's been a while but I'm back to report some really, really good news.

I believe the LDN is working. In fact - I'm just about positive.

I wanted to say that upfront before I launch into a more detailed account. I want to give as much detail as possible about why I think this is the case, and how I've been supporting this protocol in other ways.

First, I haven't been back since the October 1st '13 because I didn't have much to report. The clear word from those who have solid experiential or clinical advice (what there is of it) was that it almost always take months - not weeks - for the process to kick in and make a difference. So I kept with my program and leaned on those other pillars of my strategy to hopefully get me through until it *did* start working.

Also: when I am ill and disabled, and searching for answers doing research, thinking about and dwelling on my illness - because I have to - posting on forums like these is a lot more likely. When I get some relief and start going back into remission - I have stuff to do and make progress on. That includes all the stuff that I have fallen behind on. I'm sure a lot of you can relate. So, the last thing in the entire world I am wanting to do at that point is think about any of it if I can help it - and that includes posting about it.

During the intervening months after that last trip to the hospital and the consultation with the Jons Hopkins researcher (see earlier posts) I have stayed with the rest of my program and took my LDN 4.5mg every single night around 11 or 12pm. I rarely missed, and if I did it was only for a day - maybe two days tops.

Again my current approach for treating Complex Fistulizing Crohns Colitis is:

1) LDN 4.5mg - 1 cap daily before bed

2) Aggressively address Gut Dysbiosis with

- Body ecology diet: essentially a modified version of the all whole foods, mainly organic Paleo diet I've already been following for at least two years now, but it eliminates ALL SUGARS. Including fructose.

- Eliminate ALL sugars. So important I am saying it again. No lactose (naturally, as it is my #1 trigger) no sucrose of any kind (naturally) and no fruit or fruit derived sweeteners. Of course no factory food of any kind. And no grains, including rice, no cheating

I will have more to say about the sugar issue at the end of this post.

- Commercial capsule probiotics: at least 50 billion units a day, every day, ranging up to 200 billion a day or more (see below). Brand is normally Garden of Life Raw, recently switched to Mercola's brand just to check them out

- Fermented vegetables and kefir: I started making and drinking coconut kefir, which ended up being a key player in this story as I will soon say. Also quality locally sourced real fermented sauerkraut, korean pak dong and kimchi, pickles etc

3) High CBD/THC Cannabis Oil - when available. Due to supply issues and legality etc - during this period, I mainly vaporized 0.5mg per evening and thats it - other than very recently (see below). It was mainly an adjunct during this period, not core to the treatment.

4) Pentasa 500mg 2 caps 4x a day - I have remained on this since diagnosis and only missed during very brief periods over 3 years or so.

The story:

From October on I dialed in closer on my diet using the Body Ecology Diet as a guide. The main takeaways I got from that were NO SUGAR of ANY kind. That meant no more fruit for sweetness in my daily Nutribullet juice. No more grabbing apples or even bananas. Also - I killed all the grains including rice.

In November I kept my appointment with my naturopath and - using the data from the stool tests he ran - *stopped* taking probiotics temporarily on his recommendation - and went on a ~30 day course of Berbeline complex and another herb (sorry I cannot immediately recall which) that were targeted to those pathogens in my stool that in situ tests showed responded to the herbs.

I kept this up through Nov into December and when the herbs ran out, I went on his brand of probiotics as he suggested. I will say that I could literally feel the rawness in my gut more (though I remained going into remission) and my symptoms like the fistulas and bathroom inconsistencies seemed to linger longer without the heavy probiotics I normally would have been on.

But even so the symptoms and fistulas gradually cleared up through Nov and December and then the holidays came. Fully aware of the dangers - I kept with the program even with all of the family around (we had a lot this year), events, and general holiday social stuff around food I don't normally eat.

I was good. Well ... calculated good I strategically had a cookie one day, then four or five days later had some wheat bread on a turkey sandwich, that kind of thing. But very very minimal and infrequent over the four weeks of Dec.

After 2.5 months of clearing and going into remission - right around the 12/15 my fistulas started to act up a bit, leaking slightly. The stinging pain that comes with that and the initial swelling from the fistulas are very distinct. As is the blood that comes back in my stool. And the initial, very unique brand of constipation that comes with the intestinal swelling that blocks me up.

This was troubling and disappointing coming right around the holidays, naturally. Especially with all the family and friends and good times that this disease totally flips the middle finger at. But I remained calm and stayed with the program - crossed my fingers that it might be the herxheimer reaction or - with a little luck - that the LDN would kick in or that the THC/CBD weed I was vaporizing (not ingesting) at night would fight it off and I would pull out of it.

As I mentioned above - I did not have access to the cannabis oil much last fall. I did on the other hand have access to the raw dried plant - standard bags of buds of the same strain they use to make my oil and plenty of it. So during the fall / early winter leg of this journey I would vaporize at night, just about every night 0.5 grams or so.

With Christmas and New Years coming and my symptoms rising (scary, trust me) - I pared back on my diet even stricter to *only* organic vegetables and lean protein sources. I even dropped all grass fed beef products, as beef is - while not encouraging to Crohns directly - is harder to digest and would tax my bowels that were not moving and were bleeding at the time. And I upped my probiotic intake to over 150 to 300 billion units a day.

Well my symptoms *did* start to back off! I don't know and can't say whether or not this was the initial indication of LDN kicking in, but it might have been. It took about 4 or 5 days but the fistulas started to dry, the blood faded away, and my bowels started moving again. By Christmas Eve I was pretty confident I was pulling out of it and I would NOT be in the hospital over Xmas/New Years week.

From January through February I continued to clear symptoms, much faster this time assuredly because of the clean healthy beneficial flora diet and massive doses of probiotics I was taking. Because of the Xmas issue I kept my probiotic intake high - over 200 billion units a day. We also found a source of high quality fermented vegetables at the local farmers market, which I started to eat on a daily basis.

Around the end of January / early February I started making coconut kefir water here using kefir water grains I ordered from Amazon. Coconut kefir is a very strong probiotic drink and I added this on top of the large doses of probiotics and fermented vegetables.

Now coming up at the end of Feb I was looking forward to my first real vacation in a while. My flight was booked for the 28th. And (Murphy.s Law) right around 10 days before my trip - symptoms suddenly came back.

This time there was no cookie to point to, no sneaking a chocolate kiss of the Christmas tree, no accidental dairy intake. I had been off any kind of sugars or complex carbs for weeks and weeks. But the fistulas started to leak, the telltale swelling around the wound sites that mark activity and abscess growth, traces of red blood in the stool etc etc. My colon swelled and blocked me up and I had nothing to go on as to why.

There was a loose correlation between me starting the kefir two weeks before and the start of symptoms. But certainly not necessarily causation. I also thought that finally THIS might be the legendary herxheimer reaction. But who could say?

I stopped drinking the kefir to just to make sure. Possibly the species in the water grain variety were not playing nice in my system. However I kept up my protocol and doubled down on the probiotics - taking two 50 billion unit caps along with the two big blue 500mg Pentasa I take every four hours. That's 400 billion units a day.

Everything else stayed the same because I was doing all the right things. I vaporized more canna in the evenings but that's about it. And I watched carefully day by day to make my final decision about whether or not to cancel my flight.

Five days into the start of the flare I noted that it was stronger in some ways than the one at Xmas - but also I noted that it was not getting any worse. By the next day a fairly decent bowel movement, the next day cessation of blood, and by Monday - the day I had set as the final day to make up my mind - I decided I was good enough to go.

By that Friday there was no blood in my stool, my bowels were loosening up, and the fistulas were drying up. My first few days in FL I was still constipated but that's it.

The cannabis oil comes back into play here as I was lucky enough to have found some by that next Tuesday. Still constipated and feeling a bit raw internally, I started taking the oil. By Thursday I had a huge bowel move and the flareup was officially over. I felt great. This was not just correlation: the oil was definitely the thing that took me the rest of the way out of the flare.

Since that time I have steadily improved and am solidly in remission. Some final thoughts on this post:

Because this is not an empirical study - there is nobody testing me and measuring what's happening where it matters: in my gut, in the flora. So there's no way I can say exactly what is happening here.

What I can say is that in every other instance - when I get the telltale signs of the symptoms for my particular variety of this disease / syndrome / cluster of pathologies - in every other case before last Xmas it was a snowball effect where I was having my fistulas operated on in the hospital, then on intravenous toxic dangerous fluoroquinolones (cipro and flagyl) for days. Without fail.

Then there was a long, slow climb out of the flareup where I was disabled in bed unable to walk that took another 4 to 6 weeks. Not this time.

At both last Dec and a few weeks ago, the symptoms started very much like before ... but they stopped. Then backed right off. This last time even faster than December.

About the central role of sugars - here's what I have discovered:

With Crohns/Colitis - and more that likely the other IBD's - there is a literal war going on in our guts.

The Bad Guys have set up camp in there and are decimating the resources in the captured territories. The Good Guys (the Lactobaccillus and associated forces) are on the run and are overwhelmed.

Sugars feed the army of the Bad Guys. Its where they get their power from. But if we cut off their supply lines and feed our Good Guys so they grow fast as we starve out the invading armies and they retreat.

Keeping this analogy in mind - and understanding that modern medical pharmaceutical complex is extremely dense to catch on to the fact that the gut microbes are *central* to the understanding and treatment of this disease (ie. they are not going to help you with this) - now you have a good framework for understanding how to approach this.

If LDN and aggressively addressing gut dysbiosis helps even one anonymous stranger out there escape the kind of pain and suffering that I have, then that would make me extremely happy.

And one last piece of evidence:

I stopped eating almonds entirely almost 6 months ago because they would make me see blood in the toilet. Only the actual nuts - because when chewed they break down into little angular shards. Because of the damage in my guts they would physically scrape the walls.

I sometimes sneak a few here and there but no more than a few, no harm. But this past week I chowed down on some handfulls.

No blood. So fingers crossed there is real healing and restoration in progress.

That's it for now - I would be glad to answer any questions anyone might have.

Last edited by vongoh; 03-19-2014 at 11:54 PM.
03-20-2014, 12:35 PM   #19
Searchingforhealth
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Thank you Vongoh for sharing your IBD adventure! I am so glad it is looking good for you as of this last post. I may have missed this, but are you feeding the good bacteria with resistant starches or prebiotics such as Inulin Fos? Cold rice and potato starch are resistant starches. Everyone's pathway to health is such an uncharted course. My daughter did a FMT via colonoscopy in January for CDif and in the scope pictures her colon was so much better. She has been using a high CBD oil and that seemed to help but stress and exhaustion last week has brought on a minor flare of IBD with some pain and blood in stool. She has started on Kombucha and lots of Kefir and probiotics. Today she will try fermented cabbage. She takes lots of Lactaid pills with her diary to eliminate lactose. Have you tried L-Glutamine?
I personally think FMT may be the thing that helps people with IBD but unless you live in Australia or have cdif it is difficult to get a doctor to perform this.
03-20-2014, 02:56 PM   #20
vongoh
 
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Thank you Vongoh for sharing your IBD adventure! I am so glad it is looking good for you as of this last post. I may have missed this, but are you feeding the good bacteria with resistant starches or prebiotics such as Inulin Fos? Cold rice and potato starch are resistant starches.

Everyone's pathway to health is such an uncharted course. My daughter did a FMT via colonoscopy in January for CDif and in the scope pictures her colon was so much better. She has been using a high CBD oil and that seemed to help but stress and exhaustion last week has brought on a minor flare of IBD with some pain and blood in stool. She has started on Kombucha and lots of Kefir and probiotics. Today she will try fermented cabbage.

She takes lots of Lactaid pills with her diary to eliminate lactose. Have you tried L-Glutamine?

I personally think FMT may be the thing that helps people with IBD but unless you live in Australia or have cdif it is difficult to get a doctor to perform this.
I actually just received a tub of inulin based prebiotic powder called EcoBloom. I started putting it in my daily Nutribullet juices. I LOVE kombucha! I buy it every chance I get when I'm out.

I cut all potatoes and starches out of my diet long ago. All those kinds of carbs are cut out for me. I don't know anything about resistant starches I'll have to look that up, thanks. But my understanding of the starches is that they covert to and encourage sugars and so they are done for me.

I have a tub of L-Glutamine - but it tastes nasty, and there is some debate about whether the powdered form actually survives to get down into the lower bowels where it's needed - so I haven't been using it at all no.

I think the best thing to do about lactose is just eliminate it. If she's still having dairy and it doesn't seem to be immediately triggering or contributing to her flares - ok I guess, its her life ... but ... its sugar.

And dairy is pasteurized: the heat destroys the beneficial bacteria that was there. So you get nothing from that. It's antibiotic: literally, the antibiotics in from the cattle are present in the end product - and that kills your Good Soldiers in your gut army. Also factory food is preservatives, oftentimes irradiated (! its true) ... ugh.

Factory dairy is bad stuff - and the feds will raid, fine and lock up anyone who tries to sell the good raw stuff (god bless America! land of the free!). So my advice to anyone in our position is to forget trying to compensate with artificial means like lactaid: Don't do it. Its not worth it. Drink almond milk. Tastes better anyway.

Yes I have my eye on FMT. A lot of us do. I asked the Jons Hopkins researcher about that and she said its almost impossible to get in one of those trials here in the US - you have to be practically dead first before they're willing to try it.

But it is a glimmer of hope for the future. In the meantime I am sticking with whats working - and that is LDN, aggressively addressing gut dysbiosis every day by all means available, and high CBD canna oil when available.

re: Stress. This has also been a big part of my management of all this that I have not mentioned.

But yes - I have changed a lot over the past few years, in that - my attitude and perspective on life has changed for the better. I don't hold on to frustration, or angst, or dwell on anything negative long enough to 'feel it in my gut'.

I stay positive in the moment and let things go that don't matter. Which is most of the stuff i used to stress about.

Its really important for us IBDers. And I'm way happier as a result too.
03-20-2014, 03:20 PM   #21
Searchingforhealth
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Hi Vongoh, Thank you for your reply. We are both trying to find gut healing and taking a slightly different approach for now, because it is a lot of trail by error. I am constantly reading everything new that is coming out. As far as milk I am buying,at a dear price, St. Benoit Jersey Cow whole milk, that is lightly pasteurized, non- homogenized. Jersey cow milk is easier for the body to process. Also I make yogurt with their milk and use their yogurt as my starter. Since my daughter has been on prednesone for nearly a year, thankfully down to 5mg, it is crucial that she has enough calcium for her bones!
Maybe after her college year is over she can try LDN for a second time. The first time landed her in the hospital for 10 days and a terrible CDif infection so she is scared to try while still attending class due to fear of the "worse before better" effect.
If things don't improve soon, I may encourage her to DIY FMT. But I'm sure that would be an unpleasant scenario for her. I am part of a Facebook group that is all about FMT and message me if you want info. Best to your continued success and keep us updated.
03-20-2014, 04:48 PM   #22
vongoh
 
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If things don't improve soon, I may encourage her to DIY FMT. But I'm sure that would be an unpleasant scenario for her. I am part of a Facebook group that is all about FMT and message me if you want info.
What to you mean DIY? People are attempting something like this at home?

Yes I will message you - curious, thanks.
03-20-2014, 06:13 PM   #23
Kev
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A gentleman with c. diff, was scheduled to have fecal transplant performed at the local hospital... However, the hospital pulled out... said it was an experimental procedure and they didn't have guidelines, etc., in place. I don't know the details of how he arranged it, where the donor material was sourced, prepared... or who prepped him and inserted the tube into his GI tract... but somehow this gentleman got over ALL those hurdles, and he cured the incurable c. diff that had nearly killed him. It made all the papers here when it happened. Yes, he had a 'homegrown' do it yourself fecal transplant and it cured him.
04-01-2014, 12:02 AM   #24
vongoh
 
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For anyone who might have missed it:

Here's an article about a new study just released that confirms my theory that I have been basing my treatment on in conjunction with LDN.

"Gut Bacteria May Play Role in Crohns Disease"
http://bit.ly/1e6EEpA

What troubles me is seeing this - while its hopeful - underscores how long it takes for any truth to come out and be accepted as legitimate. Especially when the probable cause and treatment of a horrible illness is relatively easy to do and is perfectly safe.

I've proven to myself that gut dysbiosis is at the core of this illness - and probably the related IBDs as well. I didn't wait for a study to come out.

I figured this out with the help of all the good people that talk about their experiences and what few genuine healers there are out there that have done legit trials and have put it out here for people to see.

Moral of the story.

IF you wait for "them" to confirm it - it will probably be too late. Don't wait.
06-14-2014, 04:34 PM   #25
Searchingforhealth
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vongoh, are you still making progress on LDN? I haven't seen a post in your diary for a while. My daughter started taking 1.5 mg of LDN every other day and is making progress and her symptoms of UC are stable. I hope your health is also improving!
07-05-2014, 06:04 PM   #26
vongoh
 
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vongoh, are you still making progress on LDN? I haven't seen a post in your diary for a while. My daughter started taking 1.5 mg of LDN every other day and is making progress and her symptoms of UC are stable. I hope your health is also improving!
Absolutely! I have had no symptoms since this past February (as I reported above somewhere).

I am still following the same protocol I described above - I'm very consistent with it and do not vary much at all.

I've also had the opportunity to use the High CBD/THC oil consistently, every night for a few months. Ive been taking a small cap around 7 or 8PM, after all the days work is done so it does not interfere.

I still have the rubber bands hanging down from my butt from the fistula operations. They are still annoying! And walking longer distances will cause chafing, I have to sit down and chill and take a shower as soon as I have the opportunity when that happens.

But the wound areas have been healing and there is no sign of any fistula activity for many months now. I attribute the canna oil to this, the CBD has a healing factor.

My advice is still the same:

- LDN to manage the autoimmune component.

- Eliminating all sugars as much as possible to stop feeding pathogens in the gut / aggressively treating gut dysbiosis with probiotics and fermented vegetables on a daily basis

- Properly prepared canna oil to facilitate the healing process + additional autoimmune benefits

As a side benefit my clean Paleo diet with the amount of beneficial bacteria in my system every day is amazing! My head is clearer, I'm more productive, and have more energy than I ever have in my life.

I'm really happy things are turning around for your daughter, that is awesome news!

On a side note - last nite I just took my last LDN on this refill, I have a 6 month prescription that has to be renewed - and the naturopath charges over $200.00 a visit just to walk in the door. I'll call them Monday morning to make the appt. Oh well, everything costs! A small price to pay I suppose, considering ...
07-05-2014, 07:39 PM   #27
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Vongoh, this is good news all around! I am glad you avoided Remicade and Humira and are finding health!
My daughter is now taking 1.5 mg LDN daily and doing well. If this dose is working for her, I am reluctant to raise it for now. I think the 4.5 mg. is too high for someone weighing 120 lbs. She continues with high CBD oil and is eating gluten,sugar and red meat free. How are you taking the turmeric? I have 500 mg capsules and would like to add it to her supplements. I've started to make kefir and am adding this to her diet. Have you tried VSL #3? It makes her gassy but there is data to support it's benefit for UC.
When I mentioned LDN for UC to her GI he wasn't aware of any of his patients benefitting from it. But if she can continue to lower her prednisone (currently at 10 mg) and stays stabile, that is proof enough for me.
07-06-2014, 10:35 PM   #28
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Hi searchingforhealth,
My son is staying on 3 mg as recommended by his specialist for his weight he is 13 years old and weighs 32 kilos. He is still on azathioprine but hoping to ween him slowly off it . My best wishes to your daughter hope it all goes well,
Wendy
07-09-2014, 01:25 PM   #29
vongoh
 
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How are you taking the turmeric?
I have slowly warmed organic turmeric power in coconut oil on the stove - with a bit of pepper, the pepper helps to activate the curcumin in the powder. Then I filled up 00 capsules and took them twice a day.

I havent had them for a while, the process is kind of messy so I think I've been putting it off a bit because of that .. thanks for reminding me i need to make more.

Have you tried VSL #3?
Ive heard VSL 3 is quality - but its rather expensive and harder to get from what I understand - Im sure its a good product but I don't know if its worth it/necessary.

I take Garden of Life RAW 85 billion - also an S. Boularrdi capsule - first thing in the morning. Then again, both capsules about a half hr/hour before dinner around 6pm. Every day.

Garden of Life is 40 bucks a month and the Boulardi is even cheaper, and they seem to be working fine.

Then of course saurkraut, kefir, pak dong, kimchi, real farmers market pickles etc is all part of my regular diet every day.
07-16-2014, 10:47 AM   #30
7vNH
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For anyone who might have missed it:

Here's an article about a new study just released that confirms my theory that I have been basing my treatment on in conjunction with LDN.

"Gut Bacteria May Play Role in Crohns Disease"
http://bit.ly/1e6EEpA

What troubles me is seeing this - while its hopeful - underscores how long it takes for any truth to come out and be accepted as legitimate. Especially when the probable cause and treatment of a horrible illness is relatively easy to do and is perfectly safe.

I've proven to myself that gut dysbiosis is at the core of this illness - and probably the related IBDs as well. I didn't wait for a study to come out.

I figured this out with the help of all the good people that talk about their experiences and what few genuine healers there are out there that have done legit trials and have put it out here for people to see.

Moral of the story.

IF you wait for "them" to confirm it - it will probably be too late. Don't wait.
There's a book out now called "Missing Microbes" by Martin J. Blaser, MD that really hit home with me and my take on how gut disbiosis is at the root of so many maladies. It was available at my local library, so must be up there on the popularity list. But I've been able to renew it twice, so not popular enough in my town. Every doctor should be required to read it.
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