I couldn't tolerate LDN

[Mark in Seattle]

Just thought I'd add my personal experience. Before I describe my experience with LDN, some relevant background...

A couple years ago when my child was having night terrors every night for a month, I became severely sleep-deprived and developed a problem with my wrists - severe fatigue-like sensation in both wrists, hard to hold a cup, painful to steer the car, open a door, type on a keyboard, etc. I feared losing my job because I work on the computer all day and using the keyboard and mouse was so painful. I saw 21 doc's and went through countless physical therapy. Nothing helped. After about a year, the pain started to slowly subside, and the subsiding process continued for about a year, to the point that the pain diminished by about 80%.

I tried LDN about a month or two ago. I started at 1.5mg nightly. After the first night, I awoke in the morning with my wrists feeling severely fatigued and pained, like before. I continued the LDN at 1.5mg for 4-5 nights and the wrist problem continued. I stopped the LDN at that point, which was a month or two ago, and I still have the wrist problem, but not as bad. The LDN clearly awoke the wrist problem.

I'm imagining that since the endorphins are made while sleeping, I must have disrupted that process when my kid had night terrors. And I'm further imagining that the LDN is triggering the endorphin thing, since that's what it's stated to do.

Oh well, was worth a try. I'm guessing nobody else will have this sort of problem, but I thought I'd mention it, it's kind of interesting I think.

 

[Kev]

5 nights in total at 1.5 mg, and then you gave up. Yet the wrist problem persisted months afterwards. And, as you said... "I'm further imagining that the LDN is triggering the endorphin thing,". I find it hard to credit that 7.5 - 9.0 mg of Naltrexone in total taken a few months ago could really be the key to this, but I'm neither a doctor nor a scientist.

 

[Mark in Seattle]

It's not the "key" to the origination of this problem, but it's clearly the key to the recent flare of this problem which was 80% ameliorated before taking LDN, and then the next day was 80% NOT ameliorated after the first dose. There is simply no question as to the correlation and causality of the problem being rekindled by not just 7.5-9mg, but by the first 1.5mg dose. Believe it or not, there is no question about it.

 

[Kev]

I'm sorry, but presenting that as irrefutable doesn't hold up. Now, if you'd tried this on any number of occasions (2, 3, what have you) and experienced a flare of those symptoms with Naltrexone being the only change THEN you have made a good case for your conjecture. Since 21 doctors and countless physical therapy can apparently neither diagnose nor alleviate it, there is also the possibility that what you felt the next morning was LDN starting to address it. Of course, I have no proof of that assumption either.

 

[D Bergy]

If I had to make an educated guess on what was happening with your wrists, I would say you are dealing with a pathogen which has taken up residence in your wrists.

I treated my wife for Lyme Disease for several years. Not because I wanted to, but because I could not get a doctor to correctly diagnose her. Anyway, I learned a lot about how treatments affect bacteria, and how that affects the person involved. With Lyme, and several other pathogens, you get worse, before you get better. If you kill some of it, you get sick. If you kill a lot you get really sick.

Eventually, by continued treatment, and the use of antiinflamatory supplements you get better over time. But it is a miserable process in between. She is doing very well today, a far cry from crippling pain in many of her joints in the beginning.

I do not know what pathogen you have in your wrists, and it likely is in other places as well, but I would bet money it is a pathogen. There are several that can cause joint pain. It could be Lyme Disease, as the circumstances in which it occured is pretty common. Your body gets run down, or you suffer an injury of some kind, and the bacteria takes off.

It could be something else entirely, but I know of several people using LDN for Lyme Disease cannot tolerate it either. The symptoms become too much to bear, not because LDN is causing them some adverse reaction, but because it is doing what it is suposed to do. Ramping up your immune system.

When that happens the bacteria is getting whacked, and causing inflammation, which is part of the immune response. The inflammation causes joint pain, and other symptoms that are much the same as using antibiotics or other methods that kill certain bacteria.

In another words, sometimes you will get worse before you get better, especially if it is a pathogen located in a sensitive area like the joints.

If you want to test this hypothesis, order a natural antibiotic, such as one called Cumanda from Nutramedix. It works much the same as any other antibiotic, without many of the side effects. Try a smaller dose a couple of times. I would be very surprised if you did not have the very same response that you had to LDN.

If you do, you know for certain you are dealing with a pathogen. You will still have to figure out which one, but at least you have narrowed down the problem.

If multiple doctors cannot figure this out, then maybe you can, with some experimentation, and observation.

I hope you get better, either way.

Dan

 

[Mark in Seattle]

I'm sorry, but presenting that as irrefutable doesn't hold up. Now, if you'd tried this on any number of occasions (2, 3, what have you) and experienced a flare of those symptoms with Naltrexone being the only change THEN you have made a good case for your conjecture. Since 21 doctors and countless physical therapy can apparently neither diagnose nor alleviate it, there is also the possibility that what you felt the next morning was LDN starting to address it. Of course, I have no proof of that assumption either.

It holds up just fine with me. I ought to know, as I've charted this thing for a couple of years. It doesn't get any more straightforward frankly. If you don't want to buy into it, then don't. But I'm in a much better position to judge the cause and effect than you are. And I'm not wondering aloud whether there is cause/effect, I'm simply stating it as a fact. And again, take it or leave it. I didn't present this as a question to be debated frankly. It's really just an fyi.

 

[Mark in Seattle]

Thanks Dan. I have no pain in my joints. When the pain was at its worst, it seemed like something wrong with tendons & ligaments, and hence I visited hand specialists and then a tendon/ligament specialist who told me my tendons/ligaments looked superb on whatever imaging they did. Eventually as the problem slowly resolved, at least partially, the sensation changed to where it felt like irritated nerves from my elbow to my wrist, with the feeling being similar to the annoying sensation you get when you hit your funny bone (elbow region) or if you can imagine holding onto a jackhammer all day - that kind of sensation. Or another analogy is when your arm "falls asleep" after you've been lying on it too long. I came to think of the problem as having some relation to my brain because there would be moments when I would get a surge of nerve pain simultaneously in both arms. And as time went on, there would also be instances where I would get the pain simultaneously in my left arm and in my left ankle region, and times when it would happen simultaneously in my right arm & right ankle region. The ankles didn't start happening til about a year into the issue, when it was starting to resolve somewhat, and the ankles were never a big concern to me, never as painful as the forearm/wrist, but when I consulted with doc's about maybe a pinched nerve in the neck they said no because I would have pain closer to my neck. I just figured that to have nerves doing these sort of symmetrical things simultaneously, it must emanate from the brain. At least that was my guess, but since none of the doc's could figure it out I quit trying to figure it out as well, felt like I'd done all I could. I don't really think much about it any more. I'm just glad that time has helped rather than worsen the problem. I was really surprised when the pain came back after taking LDN and just decided it wasn't worth it to potentially end up unable to do my job and endure another year of a slow resolution, so I just quit the LDN. Who knows, maybe if I'd stuck with it it may have proved helpful rather than harmful, but I didn't feel like I wanted to take the chance.

 

[Kev]

Saying it is a fact does not make it so. Even undertaking a double blind study with a drug and a placebo, and presenting the data, would not make it a fact. Merely your statement.

And it appears obvious that you were reticent about trying LDN in the 1st place. Otherwise your choice of 1.5 mg versus the standard 4.5 mg makes no sense.

 

[Mark in Seattle]

Kev, you're not enlightening.

And yes I had good reason to start at 1.5mg rather than 4.5mg, just as countless other patients do; it's a very commonplace practice. And whether my actions make sense or "make no sense" in your eyes is of no concern to me. 'Nuff said here. More than enough frankly.

 

[Kev]

Well, lets sum it up. Any number of crohns sufferers are literally 'dying' to get their hands on a legitimate prescription from a bona fide doctor for low dose Naltrexone. You get one, and do you opt for the recommended 4.5 mg dosage used in the published trials; and adher to the regimen for the suggested 12 weeks... or even 10 weeks.. or 8 weeks... how about 7 weeks.... because; as has been presented by others who gone this route before you there is a very strong likelyhood that one will flare, deteriorate, feel much worse at the onset... before, hopefully, things turn around. You didn't even tuff it out for one week. When I first read your post, my immediate conclusion was that your thread offered nothing concrete pro or con in the discussion about treating Crohns with low dose Naltrexone. But I was wrong. Totally wrong. You have offered everyone a textbook example of how not to try low dose Naltrexone therapy. LDN didn't fail you, you failed.

 

[David]

I don't like where this is heading so I'll close this now