Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)


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Old 08-23-2016, 07:38 AM #21
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Blues fan,

The reason the sites are overwhelmingly positive is because LDN has been successful for a vast number of auto-immune based diseases, which afflict a large population of sufferers. These people are in general thrilled that LDN is not symptom control. Their bodies are being healed.

Unfortunately, as you probably know, LDN will not work for everyone. I am not entirely sure, but I recall it is about 20% who will not respond and this lack of response is genetically based. OPRM1 Asn4Asp predicts response to naltrexone treatment: a haplotype-based approach. - PubMed - NCBI.

At some point in time we will be medically treated based on individual DNA, not via the kitchen sink method.

It is also known that most of the compounded LDN varies significantly in potency, so it is suggested that if a person is not responding to compounded LDN after 6 months he/she should seek another provider. However, if you mixed it yourself and you don't respond after 6 months plus it is likely you are in the percentage, who won't respond. That said, there is another factor that can interfere with the efficacy of LDN: Candida, yeast.

I am adding the following link, because it lists all the possible reasons LDN may not work:
When LDN Is Not Working - Dudley's Low Dose Naltrexone Sites

Last edited by BioBased; 08-23-2016 at 09:07 AM.
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Old 08-23-2016, 05:24 PM #22
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Hi Biobased

I appreciate your enthusiasm for LDN - I wasn't criticizing the LDN sites for being positive but wanted to indicate that there is the possibility of side effects - some being severe - the discussion of which is not given sufficient weight on many of the sites promoting LDN. I had to do the alternative search "LDN doesn't work" before I found information to help another member of this site understand why her trial of LDN was causing an extremely painful reaction. (it wasn't candida)

I'm currently into week 12 of trialing LDN - (for assistance with pain relief from osteoarthritis). I'm unable to take regular pain relievers due to either allergy or interaction with medications I take for my primary condition - a potentially fatal auto-immune disease. Hence the reason it was essential that I obtain as much information as possible about likely interactions before starting. Unfortunately academically researched information for LDN is limited - there's none at all for using it with my auto-immune condition . . . so I'm being my own guinea-pig (with approval & monitoring from my doctors). I haven't posted about my experiences with LDN because as yet I don't have conclusive results (but it hasn't been all smooth sailing), and also because my situation and combination of conditions is uncommon I don't want to prejudice other people considering LDN.

Thanks for the link you provided on the genetic basis for Naltrexone not always working - it's not one I'd previously come across in my extensive search for information prior to starting LDN. Unfortunately I don't have access to such genetic testing in my country. Also do you know if the genetic influence would affect the efficacy of Naltrexone at low dose in the same manner to the full dose Naltrexone used in the study? My understanding is that naltrexone works in more than one way: as a nonselective opiod receptor antagonist (for opiod treatment) but it also works as an antagonist on non-opiod receptors (as an anti-inflammatory & analgesic ie: LDN). Is it possible the genetic influence may be limited to only one of the pathophysiological mechanisms? (Apologies for getting technical - still trying to get my head around some of this so I can explain to friends and family why I'm taking an expensive unapproved medication)

I'd also appreciate it if you could direct me to the sites that detail where people with auto-immune disease are being healed (rather than just having their symptoms controlled). Although I suspect LDN won't heal my auto-immune condition (I think of it as another management tool), I have other friends who may benefit from this information.

Yours remaining cautiously optimistic on LDN - bluesfan

Last edited by bluesfan; 08-23-2016 at 05:42 PM. Reason: correction
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Old 08-23-2016, 06:07 PM #23
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Blues fan,

It's true I am enthusiastic about LDN,because without it I doubt I would be walking today and I would be taking a boatload of meds and supplements, moaning and crying, trapped on an inflatable bed in my den. I hope you ultimately have as much success with it as I have, but twelve weeks may not be long enough to determine if it is helping.

My husband is the person who ordered it for me and had more faith than I did, even though I was the one who researched it thoroughly. Frankly, I was terrified to use it.

The people on the Facebook site GotEndorphins are the ones who are detailing their positive experiences with LDN. And noting that they are improving, not just having pain relief. Many have written that their diseases are in remission, if not gone. I have yet to read about one person who has had a severe reaction to it, but I have read about users having vivid dreams and insomnia.

GOT ENDORPHINS? LDN (Low Dose Naltrexone) - Lookup-ID.com


By any chance in your research did you come across Joseph Wouk? Google LDN ! Part One - YouTube You might want to view his videos and hear his story if you haven't.

Have you researched magnesium and rutin? I took those supplements before LDN. In the past I took them for pain, but now I am going to take them for my overall health and arteries.

In regard to the genetic component-it applies to Naltrexone, full dose or low dose. It is an antagonist only. Low-dose naltrexone - Wikipedia, the free encyclopedia

If you don't mind me asking why is LDN expensive where you are? It is very affordable to order it online.

Last edited by BioBased; 08-23-2016 at 08:03 PM.
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Old 08-25-2016, 09:32 AM #24
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Thanks anyone for your input. I will try to mix it myself and will post my response after a month for your reference. I am at the airport going to Hawaii. My plan is beach day for a month. Let's see the water will help me to ease my pain flares.
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Old 08-25-2016, 11:22 AM #25
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Numb, have a great trip and enjoy the scenery. I think between LDN and the warm water you have a good shot at improvement.
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Old 11-01-2016, 03:55 PM #26
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Quote:
Originally Posted by numb View Post
HI,
Great info! I have some questions about mixing it. Do I have to keep the mixture in fridge and how long I can keep it in there? Is my interpretation correct? 50 ml distill water mix with one 50 mg tablet. 1 ml mixture=1 mg tab.
At first, it seems so difficult to mix it myself. But after seeing the video, it is so much easier. Thanks. I think i will feel confident to give it a try.
Numb.
Interested in finding a doctor that will prescribe it. I have lupus, RA, fibro and bulging disc. Will it help with the pain of the bulging disc because I read you can't take pain meds with it. Is that true?
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Old 03-12-2017, 03:54 PM #27
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I too am a fan of LDN. My combination of Gabapentin, Lyrica, Celebrex and LDN is working fairly well. It's not perfect, but what is??
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Old 03-13-2017, 06:12 AM #28
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My question would be wouldn't this medication "negate" all painkillers you are already taking, or would you have to stop taking those?

Because above poster is still using Neurontin/gabapentin, and the like.

I'm getting confused at this point, big time.
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Old 03-19-2017, 07:47 AM #29
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Quote:
Originally Posted by CRPSbe View Post
My question would be wouldn't this medication "negate" all painkillers you are already taking, or would you have to stop taking those?

Because above poster is still using Neurontin/gabapentin, and the like.

I'm getting confused at this point, big time.

You need not be confused. Only opiate medications are contraindicated with LDN. Gabapentin, tramadol, lyrica, Celebrex are regularly taken without issue by LDN users.

Most LDN users are able to wean themselves off these other meds.
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Old 03-19-2017, 07:58 AM #30
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Quote:
Originally Posted by jimmyglaughlin View Post
I too am a fan of LDN. My combination of Gabapentin, Lyrica, Celebrex and LDN is working fairly well. It's not perfect, but what is??
Have you tried weening off any of them? I found I only needed LDN when I was regularly going for PT in warm salt water, unfortunately since that was terminated by WC I have had multiple flares, which require me to take tramadol. I believe that short stints of drugs are vital to control the worse pain, but I fear that long term they negatively alter our bio-chemistry.

Because you take LDN you might be interested in the liver cleanse drink I make. It's delicious. Simply wash and chop a whole lemon into quarters or smaller. Add to a food processor,blender or vitamix, along with 2 tablespoons of olive oil and blend with four cups of filtered water. Drain through a sieve, into a glass jar. Store in the refrigerator. To drink: pour 4-6 oz into a glass, add some vanilla, stevia and ice cubes.
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