My Low Dose Naltrexone (LDN) journal

We've had a post going recently discussing the treatment of Low Dose Naltrexone (LDN) for Crohn's. I wanted to start a new thread now as I have just taken my first dose tonight and want to share my experience. Kind of like what Kev did with Prednisone : )

I am not sure how well I'll be able to chart progress, however, as my symptoms these last several days are at an all time low ince diagnosis. I only have:

Bloating (rare for me these days...possibly because I fasted for Pill Cam yesterday or ate too many raisins?)

Fatigue. So does my husband and toddler at the moment, however, so it's possible we're all fighting something that's "going around"

Sore throat. However, I know this is part of my illness as I've had it on and off since April. It came at the same time as my URQ pain and gnawing hunger that eventually led to my Crohn's diagnosis.

Blurry vision that comes and goes. Ophthalmologist did not find any inflammation in my eyes, however I think it's strange this came on at the same time as my GI symptoms so I am mentioning it.

My horrible right sided pain seems to have lessened to almost nothing. I had pain in my hip/lower back/lower abdomen area at first that was so radiating and hot that I could not tell if it had an intestinal component or not. It became more specific over the course of about a month until finally I felt it only in my low right buttock and hip joint. I flew to Oahu to see a rheumatologist (there is none here on Maui) who said "Quadratus Lumborum" and gave me some stretches. I don't know if it was the stretches or the mad sprint through the airport in Oahu trying to catch my flight back but nearly immediately following the visit my symptoms lessened. I nearly certainly know, however, that I will need to re-attend to the "big picture" regarding my rheumatological symptoms, as these were but the latest round in a cycle of pain.

Treating or diagnosing this stuff is like trying to hit a moving target, isn't it?

Anyway, that's where I am as of today, for what it's worth. I'll let you all know how it goes with the LDN.

By the way I'm taking the transdermal cream developed by Dr. Jaqueline McCandless for autistic kids. She suggested starting with the cream as it allows me to tinker with my own dose and find the one that works for me, plus it eliminates the variable of fillers which can cause issues with some people.

4.5 mg is the dose that is recommended for anyone over 100 lbs., so I dove in and started at that dose. If that works for me I assume I'll get pills shipped out at that dose, with the Avicel (non-digestible fiber) filler that Dr. McCandless's pharmacy uses. If I have a reaction I assume I can just continue with the transdermal cream. Heck, I may want to do that anyway.

Blurry vision that comes and goes

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Where you on any drugs prior to LDN? Prednisone has done fun things like this to me in the past.

- Ken

Zoey, you are a pioneer. I will be looking forward to learn of your journey on this drug. I HOPE IT WORKS WONDERS FOR YOU!!!!! I am on 6MP and its really doing crappy stuff to my system but unfortunately I cant get LDN in Australia, no one is willing to put me on here. I have heard that compared to the crap they have us on for now for IBD it makes LDN a virtual side effect free alternative. GOOD LUCK !!!!

crampygut, I never even met the Dr. who prescribed LDN for me. There ARE doctors who are willing to prescribe it remotely, and to have a pharmacy send it to you. try Yahoo groups lowdosenaltrexone and LDN_Users. Also check out http://ldn.proboards3.com/index.cgi?board=forum. But it may be more complicated for you than for me; I was not on any immunosuppressant or steroid drugs when I desired to start.

Update

Going on 10 days on LDN. The only effect I notice so far is deep, deep sleep and bizarre dreams. I wonder about the deep sleep, as the only big side effect noted by Jill Smith's study was "sleep disturbances" which I took to mean insomnia. The bizarre dreams are mostly enjoyable, though I have had a few nightmares.

My symptoms have not altered any which is not surprising as they were, as I mentioned low when I began. Perhaps a bit less fatigue now.

I will keep you all posted. This may be a long process as I have such mild symptoms, to be able to tell if anything at all is happening.

Thanks for posting your experiences. I see my GI on Monday and am going to see if he'll prescribe some or at least look into it.

kpratte said:

Where you on any drugs prior to LDN? Prednisone has done fun things like this to me in the past.

- Ken

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I was on Entocort 9 mg/day, tapering down over 2 weeks after that. It was somewhere during my Entocort round that I noticed the blurred vision.

Any advice/insight (no pun intended?)

well, I haven't been on entocort, but since it's another form of corticosteroids, albeit different than pred., then I wouldn't put it past it to cause a myriad of problems. Do you have a fact sheet or web address on entocort (I thinks it's called budesonide?)

killerzoey said:

I was on Entocort 9 mg/day, tapering down over 2 weeks after that. It was somewhere during my Entocort round that I noticed the blurred vision.

Any advice/insight (no pun intended?)

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I found entocort's side effects to be rather mild compared to prednisone. At times with prednisone I would have trouble focusing, dilated pupils, sensitivity to light and other fun stuff.

If it's gone, then I wouldn't worry about it too much, if it still keeps happening then I would mention it to your doctor.

Here's the info on the Entocort:
http://www.rxlist.com/cgi/generic/entocort_ad.htm

- Ken

This page has info on LDN. I'll ask my doctor about it

http://www.lowdosenaltrexone.org/

Killerzoey, any update on your progress???

Well, nothing really to report. These last few days I'm horribly bloated, hot and sweaty but who knows if this has anything to do with the LDN. I've started taking a few new supplements and it could be that. Also about to start my period. So I'm just kind of noting this oddness and waiting to see how it plays out in the big picture. Nothing really to report in the way of symptom relief, but these have been low lately. I think I am sleeping better than usual and perhaps have a tad more energy during the day. I sure hope this bloating goes away soon...I'm miserable with it!

Hey KZ.. If it's any comfort, I was under the impression that the LDN improvement in the study took place gradually over a 12 week period, not an overnite miracle 'cure'.
And as for the budesonide, from their website, vision issues occur in 3% of the cases

I decided to put off asking my GI about LDN since my fistula is still draining and he recommends surgery (removing portion of intestine). I saw my surgeon right after the GI and he recommends the same thing. I had a lot of questions about that so didn't want to get off on another subject. Based on my reading about LDN, it would not be an effective method for closing of fistulas.

So once I have the surgery, I'm projecting beginning of next year, and am doing better I'll start exploring the LDN route again.

You could ask a doctor who is experienced in the use of LDN. They would likely know if it is appropriate for this situation. If the damage is too severe then surgery may be the best route.

I hope the surgery goes well for you. I sure felt much better after mine.

Best Regards

Dan Bergman

I do remember reading of one man on the lowdosenaltrexone Yahoo group who had his fistula heal pretty well with LDN. But I do not know anything about fistulas and the severity of his. I wish you luck with your surgery-sorry you have to go through that.

Dan, did your son get married? Hope it went beautifully. Anything new from the doc?

Yes, he is now a married man and the wedding went very well. I never realized how much work went into a wedding. My own wedding many years ago, was like a fast moving dream and I had long forgot most of the details. Luckily this is my wifes department, so I just did as I was told.

The clinic that I sent the original medical record release form to was not satisfied with the format so they sent their own to be filled out. I have sent it in and am waiting for them to send the records to the new doctor or find some other minor detail to slow down the process. I am glad I am not seriously ill or I would have died already.

Just as well, as I was in the middle of an experiment anyway, but now I am ready to move along with the LDN.

I am still trying to find out more about LDN as it pertains to Celiac disease and Hidradenitis Suppuritiva. If you happen to stumble into any info regarding these diseases and LDN please let me know. The more eyes, the better. I have already scoured the Yahoo LDN group site and posted a request for information.

If everything goes well with your LDN, you should be able to resume a normal life and forget about this crappy disease. I hope this is how it plays out. The really nice aspect is not having to worry about side effects. It actually should work as a cancer preventative. Not often you find a pharmaceutical product with so many positives.

Be Well!

Dan Bergman

Well, i've got my backup plan in place. Just received confirmation that Canadian pharmacys won't fill a prescription written by a US doctor, but the solution to that is that this US doctor knows a NY pharmacy that will ship to Canadian addresses. You'd think we were dealing with illegal drug running or something. Oh, the beaucracy!!!
So, to all my fellow Canucks, if you too are considering this, this is the groundwork.

For some reason it would seem a little more appealing to me if there is a little bit of illegality in getting a prescription. But I guess I will have to settle for a more legitamate but boring way of getting LDN.

I am glad you did find a method to get it. There is also the overseas route, if all else fails. I kind of like that idea too. I must have some "criminal genes" in my blood.

Dan Bergman

Thanks. Since there's no hurry for the surgery, as long as I don't mind wearing and changing the bandage on my stomach every day, I'm going to go ahead and try to get some LDN and try to see what it does before I schedule the surgery. I think I found a way to get some.

I've had a lot of expenses with moving and hospital bills so I can't do buy it at the moment but will let you know next Friday if it worked and where I got it.

It takes some time for it to work so I hope putting off the surgery is not going to compromise your health in any way.

I hope it all works out, either way.

Good Luck

Dan Bergman

Well, if forced to, I would go outside the law to get my drugs. But I think there are 2 distinct groups in life: those who sail thru as if blessed, then there are the rest of us.
Definitely feel that I fall into this latter category. I'd hate to become dependant on a drug, to only have it impounded by customs, or some other beauracratic regulator.

The surgeon said I could go without surgery indefinitely as long as I didn't mind wearing a bandage. He said this what they did in the old days. This wasn't his recommendation, but it's what he said when I told him I wanted to wait until the beginning of next year to do it. I'll start a different thread about this.

My source for LDN would not be illegal as far as I can tell, but I want to do it before telling others because I don't want to mislead anyone until I've tested it.

Hey, I've no problem having others be the ground breakers as far as LDN treatment goes (can you say guinea pigs, I knew you could). Especially want to see if LDN by itself works, or does one have to combine it with something along the lines of the SCD diet? (I didnt' see that mentioned in the trials, but it seems rampant in the LDN website). If I have to take LDN AND subsist on the grueling SCD diet, then maybe it is not the cure for me. Like, I want to get to a place where my IBD is in remission, and I can live (and eat) like a typically healthy individual. Maybe I'm asking too much?

Here is someones notes from the LDN conference. She is going from her notes and her memory. She has given me permission to post them here.

Dan Bergman


Dear all,

All righty, here we go with the second installment. Dr. Smith is clearly a teacher and packed loads of information in to her presentation. I became so absorbed that I sometimes forgot to take notes and would frequently even stop in the middle of a sentence. Now, let's see if *any* of my notes make sense.
************************************************************

Jill Smith, MD - In progress, a Phase II trial of LDN in Crohn's disease at Pennsylvania State University [USA]

Crohn's disease can involve any part of the intestine. It occurs in 100 to 200 persons/100,000. Some of the signs and symptoms are pain, diarrhea, weight loss, anemia, malnutrition, ulcers, arthritis (peripheral), skin lesions and iritis. Ideology unknown but may may be due to any one of the following: infection, change in bacteria, defective mucosal integrity, immune response impairment and can run in families - chromosome 16 abnormality. Stress, smoking and ASAIDS worsens the illness. Incorrect diet can exacerbate Crohn's.

Bacteria have an increased permeability through the walls of the intestine, leading to increased macrophages, leading to increased inflammation. Impaired T-cell function [what are supposed to be the quarterbacks of the immune system] leave neutrophils/macrophages largely ignorant of their proper functions. They no longer recognize threats as they should and instead go on a rampage. [Part of the last sentence was mine, as I had to finish the sentence after the fact, based on what I remembered.]

Those who have Crohn's have a less diverse population of bacteria. It is to be determined whether this is a cause or the result of Crohn's. Problems found in present treatments: depressed immune system, cost, compliance, IV infusions.

Goal: to improve the immune system function rather than focus on controlling the inflammation.

Dr. Smith goes on to discuss the action of LDN regarding endorphins and opioid receptors.

LDN administered to mice having colitis - evaluation reveals inflammation is decreased. Pro-inflammatory cytokines are decreased when using LDN as opposed to the results using Nal..... [ I didn't get the full name of the drug.] No liver changes, etc.

New Crohn's study: 40 persons maximum. 22 entered so far. The study is blinded. 7 month study. Final results not yet in. Colonoscopies/biopsies, histo, chemistries, C-reactive protein, plasma cytologies done periodically. Scores reveal LDN is working so far.

Advantages: Orally administered, down-regulates cytokines, cost effective, minimal side effects.

Those physicians who have FDA Identification #'s need to submit their data to the FDA.
***************************************************************

I've left out several parts of my notes in sending this letter to the list, as I'd stopped scribing a number of times right in mid thought - just gawking at the speaker. Dr. Smith had wonderful slides. Just a grand presentation all around.

Warm wishes,

Jan

Hey any update Killerzoey? After reading from some links this stuff seems to be worth further attention.

I was supposed to report back on the mail-order site I found. But recent complications with my fistula have caused me to delay seeking LDN. It turns out, now, my resection surgery may be imminent.

But the mail order site is from overseas and they issue a prescription based on a form you fill out online. I don't want to promote this since I don't know the legalities involved, but I will share it if you send a PM. It also can be found with a little diligent googling.