No, everybody has not moved on to biologicals. I don't post because not much is changed - my daughter is still in remission (confirmed by both labs and lack of symptoms), on 4.5 mg naltrexone, daily,...
Dave, thanks for speaking out and posting the story...we couldn't see evidence that SCD worked for my daughter - even the person who created the diet said it doesn't work for everyone. I can't...
LDN worked for my daughter, but not quite well enough, so she added Pentasa. That was years ago and her labs are normal, she has been able to absorb vitamin B12 without shots, and she has no...
Thanks for the quick reply! Just to be sure we mean the same thing by "normal" CRP, could you share the actual number for your CRP? "normal" is an interpretation, so I like to try to stick to actual...
lucky you - just checking: remissions meaning absolutely NO symptoms and normal labs? "Normal" meaning, for example, CRP of .7 or less? Or are you just going by symptoms?...
killcolitis, would you mind sending that doc's name and the university name to my email address? My daughter is doing OK without SCD now, but I like to keep track of latest developments....
The SCD diet is definitely hard to do. Even the book's author cautions not to try the diet unless you really know what it is about (and that means read the book) and are ready to be fanatical about...
I didn't have time to check back til just now - to read my post as simply a yay or nay for LDN is to miss the point. LDN did not work well enough by itself, accomplishing symptomatic relief but not...
My daughter has been on LDN for years. She found it definitely helped, but not enough. So she added Pentasa in combination with LDN and is now in full remission....
My daughter had that symptom only when on Predisone....
I just posted as a new topic how the combination of Pentasa and LDN put my daughter into full remission....
You can get a lot of answers at www.breakingtheviciouscycle.info ...
I haven't been on HW for some time, now, but wanted to post the latest information about what we found works for my daughter: 4.5 mg daily of LDN plus 4 grams daily of Pentasa (divided up into 4...
My daughter has been on 4.5 mg LDN for years and we know that it works, but only up to a point - she added Pentasa last year, and not only do her labs look better, but no more need for B12 shots. The...
So after all these months the ONLY day you have relief is the day you happened to take Pentasa? I doubt this is just a coincidence....
So sorry you are not feeling well! I don't know the answers to your questions, but it might help to mix 4.5 mg LDN with the Pentasa, which has done the trick for my daughter. Actually, a ten pound...
I stand corrected - thx, NiceCupof Tea, you are quite right....
If they did say you were very anemic, you should probably have an iron infusion. It's the most effective way to quickly get iron into your bloodstream, and my guess is it won't make gastrointestinal...
My daughter has had a chronic wound issue for two years now: three or four rounds of antibiotics, surgery last year to remove a ruptured cyst but surgery never healed properly (kept opening and...
Your iron supplements will be absorbed better if you have them with OJ - at least two hours after taking any other vitamin, food, or medicine - and at least one hour before taking any other vitamin,...
I'm no doc, but common sense leads me to disagree with your GI because it sounds like he is suggesting that no symptoms means remission. My daughter had no symptoms while on LDN, but her labs (CRP...
My daughter did very well on Entocort, so I hope it does the trick for you. Much better than evil prednisone....
There are plenty of studies that show multivitamins are a waste of money. The important thing to do is to find out what, if anything, you are deficient in. And that means a lab test. Vitamins are...
My daughter flared when she went off LDN, so we know it has an effect, but it didn't seem to put her into full remission...her symptoms were gone, but her labs were not normal. So she added Pentasa...
The standard dosage for Entocort is taking the pills all at once in the morning. My daughter has been on it several times, with dosages ranging from 1 to 3 pills, depending on the situation. Below is...
So good to have you back!...
The following link goes to an article about a potential link between Inflammatory Bowel Disease and tetratcycline, doxycycline so I would assume minocycline, which is a tetracycline antibiotic, is...
My daughter has keratosis pilaris - not much can be done about it. Food-based vitamin A is the safest way to supplement - carrots are good. Boiled and slathered with butter is good - the fat helps...
Dr Leo Galland in nyc will prescribe it but he doesn't take insurance. There is a list of pharmacies in NYC here: http://www.lowdosenaltrexone.org/index.htm#How_can_I_obtain_LDN Has your GI refused...
Darn, hang in there, Nanners! This DD is so unfair......
Thanks! I hope you do, too and am glad you have been doing better on Entocort!...
My daughter was a little bloated in the first couple of weeks after starting LDN, but it settled down. We suspect the bloating was causing by the changes LDN was making in her system. She also had...
My daughter has been using LDN, which keeps symptoms at bay but the labs showed CRP was above normal. So for the last two months she has been on the highest dose of Pentasa combined with the LDN. She...
If the meds or diet are effective enough then yes, it goes away. You are on a fairly weak medication, which doesn't have much of an effect, if any, for most patients, so a change in diet might help...
Here's info about the SCD diet: www.breakingtheviciouscycle.info ...
You can try faxing the doctor's office. A written fax is harder for the office to ignore, since it provides you with documentation. Otherwise, it's your word against theirs about how many times you...
How do you know your Crohn's is not active? My daughter has no symptoms even when her own Crohn's is active. What I'm getting at is, how can you tell for sure that the narrowing is due to scar tissue...
Those are the symptoms my daughter had when she was taken to ER. At first, they thought it was a stomach bug....
My daughter had low platelet count while trying out Pentasa. Unfortunately, at the same time she was trying out Pentasa she developed mononucleosis, so the docs didn't know whether it was the Pentasa...
I wouldn't worry about what the manufacturer is saying in terms of length of time. Your doc is the best judge. The manufacturer is just giving a guideline. A clinical trial showed that taking 6 mg...
My mom had C Diff and the Flagyl didn't work, but the vancomycin succeeded in knocking it out....
If you are interested in dietary changes, you might want to check out the SCD diet, which has helped some people. You can find out more info about it at www.breakingtheviciouscycle.info ....
If you read the article carefully, you will note that it does not talk about remission. Instead, it talks about a 70 point reduction, for instance, in CDAI. LDN seems to help the majority of...
what is the vaseline for?...
Some patients who don't do well on 6mp seem to do better on azathioprine (a brand name is Imuran). My daughter's first colonoscopy didn't show the terminal ileum because a stricture prevented entry...
LOL, actually thanks for reminding me! Best answer, "I've heard about colonoscopy and just want to learn more about it." Anybody can truthfully reply this way. The other answers are none of their...
The news of the day in New York says no toilets will be installed at the new 9/11 WTC memorial site, to be opened in September:...
NYVeggie, that's very interesting - would you mind emailing me the name of the doc? ShammyD, the Entocort might work wonders for you. My daughter did very well on it - over time, due mainly to...
Thanks. For those, like me, worried about privacy, here are some thoughts and remedies: - the site is sponsored by a pharmaceutical company, which asks for your personally identifiable info: name,...
thanks, your question reminded me to update signature, below. She takes SCD-legal supplements (no starches, sugar, or other additives) and gets them here www.lucyskitchen.com and here...