LDN advice

[phillycrohns]

Hi Everyone:

Can I ask for more advice from you LDNers?

So I am now on week 7 of LDN (at the 4.5mg dose for only 3/4 weeks) and I started getting better last week, but yesterday I was traveling and forgot my Rowasa enema and only took my Colozal (and of course my LDN). So I am back to bleeding again today. Did any of you LDNers use Rowasa during the initial phase of your LDN treatment? Just wondering if using it is contributing to the flare, or helping control the flare. My crohn's/colitis is generally lower left-sided so I generally have to medicate "from the other end" to get things under control.

I only have 4-6 bm's per day (half of which are just blood, mucus and other flimy stuff--SORRY FOR BEING GRAPHIC HERE!). I have had burning in my colon for a few weeks now since starting LDN, which seems to be getting better and less frequent--I think it is when food hits my colon. I also get a strange "hot flash" and tingling up my spine and in my head when food hits my colon--as well as pain. Has anyone on LDN experienced this? Any thoughts on what this is? Perhaps die-off of the bad stuff?

Also, I am wondering if my diet is perhaps causing some of my problems. I eat well, I am just concerned I am not eating the right things. I have been eating cooked veggies, eggs, gluten free bread (1 slice per day), fish, chicken, turkey, lamb & beef occasionally, homemade SCD yogurt, avacado, potatos, rice, quinoa and whey protein shakes. Does anyone have any dietary advice to offer?

Thank you!
Chris

 

[D Bergy]

I have never used either, and had to look them up to know what they were for.

Rowasa contains Mesalamine and I copied the information I found on possible
intolerance's or allergic reactions to it. I do not know if it pertains to you or not. I think you would have to test it out by stopping a starting a couple times to see what reaction you have. Week on an d off, something like that. I would consult your doctor to see if there is any problem discontinuing so you can sort it out.

Since the mechanism to how it works is not known, it is difficult to know if it would interfere with LDN or even other medications. I guess this is why I like to do one thing at a time to assess any treatment.

Mesalamine has been implicated in the production of an acute intolerance syndrome characterized by cramping, acute abdominal pain and bloody diarrhea, sometimes fever, headache and a rash; in such cases prompt withdrawal is required. The patient's history of sulfasalazine intolerance, if any should be re-evaluated. If a rechallenge is performed later in order to validate the hypersensitivity it should be carried out under close supervision and only if clearly needed, giving consideration to reduced dosage. In the literature one patient previously sensitive to sulfasalazine was rechallenged with 400 mg oral mesalamine; within eight hours she experienced headache, fever, intensive abdominal colic, profuse diarrhea and was readmitted as an emergency. She responded poorly to steroid therapy and two weeks later a pancolectomy was required.

I never had any reaction from LDN other than the dream thing.

Your diet does not seem to be out of line, but fish for some reason seems to bother me some. I have no idea why, and it may be breaded fish that is the problem. I suspect some ingredient in the breading may be the culprit, but I have not confirmed that yet.

I guess when you are mixing treatments, it is kind of hard to nail down problems or benefits of any one of them. Time may take care of this also. LDN and even other treatments I have used, produce unstable results in the short term, but stabilize once the body adjusts to the new circumstances.

I just went through some instability from an alternative treatment. I just rode it out and it went away on its own.

Sorry iIcould not help more, but there are a lot of variables involved.

Dan

 

[phillycrohns]

Dan:

You are very helpful. Thank you for taking the time to even write back. It is comforting to hear from other people who understand what you are going through.

I came across this interesting blog post. You seem to be very well-read when it comes to the science of disease and thought you might be interested in this theory. Let me know your thoughts if you get a chance.

http://coolinginflammation.blogspot.com/2009/09/cure-for-inflammatory-diseases.html

Best,
Chris

 

[DMS]

Hi Phillycrohn's
Sorry, I can't help you re the medications, Dan as always has done a great job explaining how it works. But in regards to your diet, if you are trying to combine SCD with LDN you're diet still has a lot of what is considered di-sacharide carbs or 2 sugar (as opposed to the mono sacharides which is what's recommended for SCD). Your gluten free bread is probably made from either rice, spelt or ezekiel grains, potatoes, rice and Quinoa are all "illegal" as well. If you're not trying to do SCD then it looks like your diet is great. The only thing I would suggest is cutting out the whey or try a whey isolate (pre digested whey), it can be really hard for some people, and then at a different time maybe the eggs, lots of people have intolerances to these as well.

My son could not do anything dairy at all, and we only found that out after a lot of trial and error. He is on month 4 with LDN and the only symptom he has had (besides the dreams whenever he upped his dose) is a heaviness in the pancreas area (lower left side) this didn't happen regularly, just every once in a while it would be quite painful for a few hours, it never lasted long though.

Sometimes the SCD yogurt can really mess you up for a while until some of the bad bacteria has been replaced with the good bacteria from the yogurt, how long have you been doing the yogurt?
Good luck, stick with it - LDN is a SLOOWWW process, but if you look at it in terms of week to week, instead of day to day, hopefully you can see improvement.

 

[D Bergy]

I do not disagree with the trouble biofilms present when attempting to eliminate a pathogen. I do think this is one reason, but not the only one, that antibiotic treatments for Crohn's does not work very well. Or, at least not as well as it should work in theory.

Biofilms are also one reason chronic Lyme disease is so tough to eliminate. Since I have been treating my wife for this, and was aware of the problem of biofilms , I have used alternative protocols to skirt around the problem. You either need to use products that can break down biofilm and kill pathogens, or use a separate product to break down biofilm with another product to kill pathogens, or use a method that cannot be stopped by biofilms.

By breaking down the biofilm, you allow your body to kill the bad bacteria that reside within the protection of the film. Biofilms can exist in the bloodstream and various other places. Breaking them down in the intestinal tract should be easier than these other more remote areas. Nattokinase, Serrapeptase, Grapefruit Seed Extract, are probably the most common supplements used for this.

My wife has used Grapefruit Seed Extract, and even using it alone, without any other products has resulted in Lyme die off. It is pretty potent stuff. I really have not used it much, other than an antiseptic for cleaning.

Titanium Oxide, used in many supplements, helps to contribute to the problem of biofilms according to some literature I have read.

Dan

 

[phillycrohns]

I have tried the SCD diet in the past. But I lost so much weight and became so lethargic and "shaky" that I had to stop it. I was below a size 0. So that is why I am not doing it again. I have already lost 15 pounds from LDN (and I am eating some starches!) so I am really hesitant to lose any more by trying SCD again.

You are right, though, that if I look at it week to week, I am seeing progression. It is the downs that scare me. And I have to remind myself that this is a slow process and the downs do not necessarily mean that LDN is not working or will not be effective for me.

In terms of diet, I plan on doing either the LEAP or ALCAT food sensitivities testing so I can customize my food intake rather than just do a general diet like SCD or some of the others. I would do an elimination diet, but right now, I can't stand to lose any more weight. Also as far as whey, I am taking Whey Isolate, so it seems I am safe there. And according to the biochemist, whey is effective at breaking down biofilms. So hopefully it is doing some good there as well.

Can anyone suggestion supplements for bacteria, parasites, viruses and yeast/mold?

Thanks!
Chris

 

[D Bergy]

I do think that a good diet for one person may not be the answer for the next. We all have a different ethnic back round and our bodies have probably adapted differently to various foods.

I found that a high protein, low carb diet works best for me, and always has. I still eat some carbs, and more or less force myself to eat fruit and vegetables although I really do not care for either that much.

Since my ancestors come from near the arctic circle, it is not likely that fruit was a staple, or vegetables. They were eaten in season and meat and fish had to be the main food source. In the dead of Winter I am sure grains were eaten also, to prevent starvation.

If you look at your ethnic past, you may be able to get some clues as to what your culture ate historically. possibly this can point you in the right direction.


Dan

 

[Kev]

I'm on a low fat, low residue, low fibre, high protein, lactose free diet. It came into being BEFORE I was introduced to LDN. I maintained it after starting on LDN, and I am not going to rock the boat now. I did rock the boat big time last summer, but it wasn't diet or meds that I changed... I stopped smoking tobacco. In less than 2 months I was bleeding heavily, despite my LDN, and despite taking heavy doses of nicotine replacements (in excess of 21 mg a day)

I knew before I stopped that it was a risky proposition... but I wasn't expecting such a rapid onset of bleeding, nor for it to last as long as it did (my downturn).

I'm not advocating smoking as a cure... it typically interferes with treatment of crohns disease... BUT... for colitis, esp. ulcerative colitis, and to a lesser extent crohns colitis, it does do one thing that doctors intensely dislike discussing. It stops the bleeding. I had thought (hoped) this was due to the nicotine. In my case it wasn't... and with approx. 600 plus added ingredients in tobacco, the odds of figuring out which does the trick is pretty remote. Speculation has it the benefit is derived from the carbon monoxide (which is a lethal poison). I don't know.

Anyway, to keep me going strong, I follow the diet I mentioned above, I take a general vitamin (one made without lactose) for people over 50, I supplement my probiotics with at least one serving a day, I take wild salmon oil capsules, 4 grams of Salofalk, and 4.5 mg of Naltrexone, plus smoke 8 - 10 cigarettes a day

For whatever reason, that works...

 

[phillycrohns]

Thanks Dan and Kev. I find that trying to figure out what to avoid food-wise to be so difficult. I looked up the low fiber low residue diet and realized that I am pretty following that, except for the wheat. Things are progressing and I can finally see progress, though it is generally two steps forward and one step backward. I am trying to figure out if fat is an issue for me or not, but it is hard to tell. I will have to cut out most fats for 2 weeks to see.

My ethinicity is Polish, so I am guessing my ancestors ate alot of meat and potatoes and a scattering of veggies mixed in. And lots of homemade sauerkraut. Do you guys have an opinion on homemade sauerkraut--which from what I have read has actual live bacteria, unlike the store bought kind. I am wondering if it would be a good thing for a healing gut, or if I should wait until I have healed more.

Chris

 

[D Bergy]

I think home made Sauerkraut is good for most people, and I eat it once in a while. Vinegar is thought to break down biofilm in addition to the good bacteria.

Sometimes I do fine with it, other times I will get some lose stool after eating it.
I think if eaten with other food it works better for me.

Try small amounts of it, and see how well it is tolerated.

The two steps forward and one back is pretty typical. I am glad it is moving more forward than backwards. I think that is a very good sign that it is working as it should.

Dan

 

[phillycrohns]

Fingers crossed it will continue in that direction! I will try a little sauerkraut and see what happens.

Best,
Chris