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LDN - how's it working for you?

Discussion in 'General Treatment' started by jace, May 26, 2010.

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I've been on LDN for...

  1. Less than a month - it seems good

    12.4%
  2. Less than a month - it's not nice

    13.7%
  3. 1 - 3 months - feeling much better

    6.2%
  4. 1 - 3 months - some good, some bad

    6.8%
  5. 1 - 3 months - feeling worse but hanging in there

    3.1%
  6. 3 - 12 months - it's great

    9.9%
  7. 3 - 12 months - not sure it's working for me

    9.3%
  8. 1 year and more - this stuff works for me

    13.7%
  9. 1 year and more - not sure it's worth it

    3.1%
  10. I used to take it but I gave up

    21.7%
  1. Sancar

    Sancar Sick of being sick ~ and so is my walking buddy

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    @Webdog - I'm sure you save $$$ mixing LDN like that. It is pricey with ALL the other meds +supplements we take. I would love to try that method myself.
    May I ask how the Dr prescribed the RX for you? I would like to see if I could get it covered by my insurance as well.
    It seems like a hassle to mix it up? As you pointed out definitely worth it...
     
  2. Sancar

    Sancar Sick of being sick ~ and so is my walking buddy

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    FYI - I've been in LDN for 6 months. I don't see a major improvement in pain. However- the arguments for the positive action in "The LDN Book" regarding "Enhanced mitochondrial function" " among others is worth my taking at least a year to see if I notice results. I've had to raise my dose gradually.
    I may be at my limit at 3mg taken at 9:00 pm. Any stronger than that and I wake up worse than usual...
     
  3. Webdog

    Webdog Senior Member

    @Sancar I first had doctor outside my insurance (Open Medicine Institute) recommend and prescribe the LDN, which I got mailed monthly from a compounding pharmacy.

    After I knew LDN worked well for me, I researched online how to mix Naltrexone tablets with water, and kind of based my procedure off what I read. Most instructions say to use distilled water, but I don't.

    I then approached my primary care doctor (Kaiser Permanente) and asked if he would prescribe the 50mg Naltrexone. He already knew it was working for me, and seemed to think my water mixing procedure was reasonable.

    I get twenty 50mg tablets mailed to me at a time (roughly a 3 month supply), covered by insurance. The pill bottle actually says "Take 1 tablet by mouth every 5 days", which, of course, is NOT how I take it. :cool:

    Hope you can get the Naltrexone covered by insurance. If not, just buying 50mg tablets will save money compared to a compounding pharmacy.

    PS: Once you find a bottle the right size, it's really easy. Just fill with water and drop the tablets in. Shake and put in the fridge. You might search Amazon.com for "80ml bottle" or whatever bottle size is right for you.

    ETA: I also remember sending my primary care doctor a website with LDN information. I think it was https://www.ldnscience.org.

    ETA: At the time, I was also being evaluated for possible Multiple Sclerosis (I don't have it). I gave this link to my doc as well http://www.nationalmssociety.org/Treating-MS/Complementary-Alternative-Medicines/Low-Dose-Naltrexone
     
    Last edited: Apr 6, 2017
    Manganus and Sancar like this.
  4. Sancar

    Sancar Sick of being sick ~ and so is my walking buddy

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    @Webdog - Thanks for the great info!:thumbsup: I'm going to try to find the "right bottle" for mixing purposes. I have to go to me compound pharmacy today, so I'll ask if they have a bottle.
    My primary care Internist is giving me the RX for LDN right now. So perhaps I van get him to agree to the formula and get ot covered? Again Thank you...Great info...
     
    Webdog likes this.
  5. Manganus

    Manganus Senior Member

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    Canary islands
    I've a bunch of 50mg capsules left over from very long ago. They were prescribed by a psychiatrist who may have seen some hints, somewhere in some scientifical paper or magazine.

    According to the medical records, I had complained about anxiety and was using alcohol to counter anxiousnes and come to sleep, despite quite high doses of anti-depresants making me sleepy.

    I choose to belive it was a well-intentioned test. CFS was not at all mentioned, which is no surprise. She could not, ...she wasn't allowed to prescribe naltrexone for anything else but alcoholism. Of course she had no clue about low dosage usage, and the 50mg-dosis had more disadvantages for me than advantages, so I tired.

    Now, however, I've come to a stage when I may be prepared to test (again), but this time in much lower doses.
    (And I've made no decision yet. I am a bit suspicious since we have no good understanding of the etiology of ME, nor of the mecanism of action for naltrexone.)

    A water solution in the fridge would maybe work well, but I wonder if someone has seen reports from people mixing the drug with fat (butter). I've not yet had the "energy" (or, honestly, ability) to read up on the substance. I do not know its chemical proporties. I have no idea whether storing the content of a capsule in fat would be better or worse than in water.

    Three years ago, I moved to the Canary islands with warmer and dryer climate. The last few years, my ability to walk has diminished. I used to have rather bad pains, but I was able to take long (10 km) promenades despite them. Now the aches are moderate-to-mild, no longer using painkillers daily, but I get sick from walking to the store, unless I wait for one of the better days.

    My symptoms, right now, are chiefly cognitive. I guess the Canary islands may be the explanation for improvement of pains and depressions. I take cannabis oil to the night, in a formula with as little THC as possible. That's actually my main medication right now, and the only stuff I take (almost) daily.

    My idea is to start with 500µg (one percent of the content in the capsules). Hence the preparation has to survive three-four months.
    I guess the best would be to use the freezer as storage, except for a small part kept in the fridge.

    Unfortunately, I've no physician to exchange ideas with.
     
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  6. Webdog

    Webdog Senior Member

    I should also note, I don't take LDN for pain. I've never had significant body or muscle pain.

    LDN does help with some neuro symptoms. I no longer stumble when I walk. I no longer randomly drop things. I also think it helps a bit with my episodic headaches.

    Unfortunately, LDN doesn't help my brain fog or sleep.
     
  7. flitza

    flitza Senior Member

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    Think it's great that you did this.
    I have a question. I read Dudley's thing about drug interactions and he said alcohol is contraindicated. I usually drink two glasses of wine in the evening. It makes me feel better: better appetite and vasodilation, I think. In any case, anyone have a bad experience with LDN and a bit of alcohol?

    I'm taking my first mini-dose of LDN (perhaps 0.25mg) tonight.
     
  8. Diwi9

    Diwi9 Senior Member

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    @flitza - I've been on LDN for about 6 weeks at 4.5mg. Some people with ME/CFS are alcohol intolerant, I'm not and have not had any problems if I have a glass or two of wine. Major benefit so far is less brain fog and less PEM. That said, titrating up was very hard (especially from 3.0 to 4.5mg). I took the advice on here to stick with a dosage for a week and if I didn't improve, then go back down. It worked and I'm happy I stuck it out, but I can understand why some people cannot...symptoms worsened and I felt incredibly flu-ish for a week. Good luck, I hope you find benefit too!
     
    flitza likes this.
  9. Hugo

    Hugo Senior Member

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    I lost my LDN doctor in the start of my treatment I dont know what to do right now. I need to continue my treatment Im not so much for buying without a prescription but maybe I should try that. Anyone know a reliable source? If someone live in scandinavia and are doing LDN maybe you can PM me.
     
  10. flitza

    flitza Senior Member

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    Thanks so much.
    Took my first ultra-mini-dose last night (0.2mg). I'm incredibly sensitive to stuff. Had cramps and diarrhea, but that started about 10 minutes after dose, so I think (and hope) it was unrelated. Felt some mild neuro/psych effects: more physically relaxed and slightly better dream quality, when I did sleep (which was quite little). Will continue.
     
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  11. Hugo

    Hugo Senior Member

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    So back on LDN again. I had a forced break (a week long). I also went up to 2mg from 1.5mg now. In a way this break was kind of intersesting since I seen in MS forums that a lot of people have pauses (I think the principle is the same as immunovir protocol).

    As some others describe there first experience with LDN I also had an increased libido during the first weeks but then it went away. This night dreams back on LDN again showed me that the libido was back again :). So I guess the breaks can have positive effect on LDN treatment (or it could be that i took 0.5mg more now than before).

    It was not any bigger problems with my symptoms fatigue and pain during the break either surpisingly so I had aproximatly the same effect as with LDN during the break.
     
  12. Matthew Jones

    Matthew Jones Senior Member

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    Tried it for 2+ months, felt nothing, gave up.
     
  13. Manganus

    Manganus Senior Member

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    Canary islands
    How much?
    :cookie:
     
  14. Matthew Jones

    Matthew Jones Senior Member

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    I worked up slowly to about 3.5 ML. I suppose I could have carried on to the full 4.5 ml dose but I ran out and thought its not worth getting more.
     
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  15. AlwaysTired

    AlwaysTired

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    I was on it for 6 months- 4.5 mg for the last 5 of them (started at 1.0 and titrated up quickly)

    It made me much more tired and that never went away. I hung in there hoping it would, cause even as a preventative it would have been fine with me since side effects are low. But since fatigue is the main and only debilitating symptom I'm experiencing being more tired just defeated the purpose.

    Sucks cause it seemed so promising...
     
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  16. purrsian

    purrsian Senior Member

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    I've been on it 5 months now, up to 2mg and about to progress to 2.5mg. I've been increasing very slowly due to med sensitivities, but have had zero side effects with LDN thus far. I'm not certain yet if it's improving my immune system or fatigue, but it has definitely improved the quality of my sleep. My sleep used to be about 5/10 in quality, but now I'm usually rating it at about 3/10 (with one as the best).

    I'm having it compounded at a compounding pharmacy each month, usually about $50 AU for 30 tablets. I take it about 7 or 8pm and always have my best period at night now (approx 8 to 11pm). So aiming to take them earlier in evening to try and make good period a little earlier.
     
  17. Manganus

    Manganus Senior Member

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    This feels like the most stupid thing I've done in recent years.

    I started with 1½ mg/day in the end of April. In one or two days, I discovered asthma-symptoms from my chest, rhonchi and some wheezes, although not particularly alarming. After I got asthma quite sudden and unexpected in my 20s, I've done well without any medication for over five years now. But every now and then, I've noticed some milder symptoms, just as a reminder, so to say.

    The last years, I've come down with one longlasting cold each year - each spring, actually - not particularly severe. Ten days after I'd started with LDN, it felt like I'd caught a pneumonia. I do not think it was a pneumonia, but it felt like that. In a few days I've come to feel more miserable than for ages - miserable in the typical way of acute infections of the respiratory tract, that is different than my usual misery (likely associated with generalized inflammation). By then, I'd started to question whether LDN "might have worsened this year's spring cold?"

    I made first one day's pause with LDN, then after two more days of medication, I decided to call the LDN-experiment off, at least for now. My condition improved when I paused, and worsened again when I continued with LDN.

    Now, it's almost a week later, and I'm quite angry at myself.

    The cold-like symptoms have almost disappeared. My nose is no longer runny, pain from sinuses is mild-to-moderate.
    But the asthma-symptoms remain. Maybe they are milder It's plausible. But there is a cumulative effect on me: Even if the symptoms get milder each day, the total effect is still that I'm a little worse each day than I was the day before.

    I can not know for sure, if LDN is the culprit. But it seems rather likely that my "old" asthma was re-activated by my LDN-experiment.

    The for now most important asthma symptom is anxiety.
    If I can't control and limit the anxiety, I fear it will end with a serious crash.
     
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  18. flitza

    flitza Senior Member

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    Do you take an inhaler for your asthma symptoms. They can cause agitation as you probably know other than the selective kind such as Xopenex.
     
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  19. kikala

    kikala

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    Thought I'd add my experience, in case it's helpful.

    Used LDN for 8 months total, started very low and very slow and by 5 months was up to 4.5. Didn't experience any improvement at all so stopped.
     
  20. eric_gladiator

    eric_gladiator Senior Member

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    Are there any alternatives to this treatment?
     

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