Low Dose Naltrexone LDN

KD · Post by KD » Fri Mar 22, 2013 1:54 pm

I mentioned last night in another post about LDN.Late 2011 and last year I had an adventure I wish I never had. I started 2011 doing pretty good. Had my gut under fair control with some remission but my stools were mostly loose and my diet was good no new food intolerances. I had seen my homeopath a few times for treatment for my MC without any luck. I rode 2 century bike rides one in May and one in October. A few weeks after the Oct. ride I started to feel poorly and had a funny feeling in my chest when I bent over, had trouble sleeping and had a heavyness in my chest when I laid flat in bed. One night it sent me to the ER and was surprised to be diagnosed with Pericarditis (inflamation of the sac around my heart). 2 nights in the hospital and home on high dose NSAID's which I argued about because of my MC but after discussion with my GI we discussed it might make the MC worse but it was my only choice at that time for treatment it should only be for 2-6 weeks so go with it. 48 hrs I was back in the hosp with severe chest painand this time pericardial and pleural effusions (fluid build up). This time I was really sick, spent 5 days in the hospital on high dose IV steroids. Huge bummer, they also put me on 800mg of motrin 3 x dailly and colchecene which made my D much worse

During my recovery I would do well for a while then have a recurrence. At one point my CRP (measure of inflamation) was 199, normal is 0-2. The third hospitalization was at the beginning of a recurrence I was celebrating my birthday and went to PF Changs and got a serious gluten contamination which made the inflamation worse. More IV steroids!!! Urggggggg! My docs were all stumped and didn't know what to do with me. Sent me to a Rheumatologist because they decided it was probably autoimmuen modulated since I have Hashimotos and MC. All this time I was getting care from my homeopath lots of high dose IV vitamin C lots of natural antiinfalmatories, accupuncture..... My rheumatologist wanted me to take drugs to shut down my immune system but couldnt guarantee me I would ever get off of them. My homeopath and I discussed other options and we decided to try LDN and low and behold it worked!! Took a couple of months but by mid July I was off of everything and back on my bike. I sure wish the LDN had worked better for my MC but the other drugs really did some damage and I am still trying to get control of that. Thats why I am doing this allergy elimination to see if I can calm things down and maybe the LDN can help me get into remission. Thats my LDN story if you want any other on how LDN can help autoimmune issues you can go to lowdosenaltrexone.com

gluten · Post by **gluten** » Fri Mar 22, 2013 2:57 pm

Hi, Did they check your CRP after the the treatment with the LDN? Jon

KD · Post by KD » Fri Mar 22, 2013 6:39 pm

It continues to bounce around a little initially it was1.9 most recent in a mild flair up it was up to 3.4. Nothing like before pericarditis when it was 0 .6 . Haven't had it done since 12/23/12. Still on naltrexone but the Clair's are very mild for 2-3weeks about every 3-4 months.

Carriagehouse · Post by **Carriagehouse** » Sat Mar 23, 2013 10:12 pm

I have been on low dose Naltrexone since December and it has helped me tremendously. I plan to keep taking it as long as it keeps working for me, in combination with the elimination of known trigger foods. Other than continued low energy and occasional days of extreme fatigue, my symptoms have mostly resolved and I think LDN has played a significant role.

KD · Post by KD » Sun Mar 24, 2013 8:23 am

Leslie,
What dose are you on?
KD

Carriagehouse · Post by **Carriagehouse** » Sun Mar 24, 2013 12:23 pm

I'm on 4.5 mg, taken right before bed.

wmonique2 · Post by **wmonique2** » Sun Mar 24, 2013 3:13 pm

Lesley,

What symptoms do you have that it takes care of? I am intrigued since I read about it...

Thanks,

Monique

Carriagehouse · Post by **Carriagehouse** » Sun Mar 24, 2013 6:14 pm

Hi Monique
It has pretty much gotten rid of D, unless I inadvertently eat gluten. I am able to eat most fruits and veggies now. I no longer have gut pain when I eat, and no more embarrassingly loud noises coming from my intestines. I'm also sleeping much better, but that might be because overall I am feeling better and healthier. Taking lots of vitamin supplements, too. I haven't experienced any negative side effects from the LDN.

wmonique2 · Post by **wmonique2** » Sun Mar 24, 2013 6:22 pm

Leslie,

Your GI doc prescribed it? How come most of us are on entecort and mesalamine if it works so well for you? I never heard of it until now...I don't eat hardly and fruits or vegies, GF, SF, DF, nuts...

I read up on it and it seems like it's a compound pharmacy item. Did you suggest it to your doc and he is the one that recommended it?

Thanks for answering.

Tex---can you expand on this topic? sounds like an alternative that might work better for some..Thanks.

Monique

Post by **tex** » Sun Mar 24, 2013 7:20 pm

wmonique2 · Post by **wmonique2** » Sun Mar 24, 2013 7:24 pm

Thanks, Tex!

I should have done my homework before I asked you to do it...sorry.

Love,

Monique

Post by **tex** » Sun Mar 24, 2013 7:32 pm

Monique,

Not a problem. I only listed these links to old threads because I really don't know much about the treatment, and those discussions cover it pretty well, I believe. I thought this would be better than me leading you astray with my ignorance.

Love,
Tex

wmonique2 · Post by **wmonique2** » Sun Mar 24, 2013 7:37 pm

tex wrote:Monique,

I thought this would be better than me leading you astray with my ignorance.

Love,
Tex

Seriously? You ignorant? The understatement of the year

Monique

Carriagehouse · Post by **Carriagehouse** » Sun Mar 24, 2013 7:55 pm

Monique, I walked away from my GI after the first appointment with him, when he insisted that a course of corticosteroids would "cure" my LC and that dietary changes would have "no effect whatsoever." The LDN was prescribed by my naturopathic physician/acupuncturist and yes, it is a compound pharmacy item. You have to be very careful not to take any kind of narcotics when you're on it. When I had my recent surgery I had to discontinue the LDN while taking pain meds (and 3 days prior to surgery), but I was back on it in less than a week. During that time I did have significant D, but I don't know what caused it - anesthesia, pain meds, anti-inflammatories, or going off LDN .... or some combination of all those factors. My system righted itself pretty quickly.

The only vegetables I still have issues with are cruciferous - broccoli, cauliflower, brussel sprouts. I've been adding a different fruit each week and so far, I have tolerated everything. I am GF, DF, caffeine free and working on going sugar free, but I still need (want) that sweet treat in the evenings ;)

wmonique2 · Post by **wmonique2** » Sun Mar 24, 2013 8:10 pm

Thanks, Leslie! Very good info.

Tex just posted several links and it makes for interesting reading. I'll keep it in the back of my mind in case things stop working. I am also GF, SF, DF, red meat free, caffeine free and sugar free, avoid nuts and cruciferous vegies as well...(Pretty soon I can claim to be FF which stands for Food Free--I'll be sucking on air

)

Monique

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