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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

    12.1%
  2. Less than a month - it's not nice

    12.9%
  3. 1 - 3 months - feeling much better

    6.9%
  4. 1 - 3 months - some good, some bad

    7.8%
  5. 1 - 3 months - feeling worse but hanging in there

    3.4%
  6. 3 - 12 months - it's great

    11.2%
  7. 3 - 12 months - not sure it's working for me

    10.3%
  8. 1 year and more - this stuff works for me

    12.9%
  9. 1 year and more - not sure it's worth it

    3.4%
  10. I used to take it but I gave up

    19.0%
  1. Mrs. Shermina

    Mrs. Shermina

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    My husband has been taking super-low .75 dose for two months, dialing back from an attempted 1.5. It has caused severe, severe depression. Also, his appetite is pretty bad now. Not sure if we'll continue.
     
    joe4211 likes this.
  2. daisybell

    daisybell Senior Member

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    I've been on LDN for about a month now, and have had far more improvement than I could have ever dreamed of.
    My brain fog is almost completely resolved, and I have gone from not being able to walk 20 metres without feeling awful to being able to do light gardening for an hour....

    I hope that the effects will last, but even if not, it will have been worth every second just to feel better for however long it lasts.
     
    Matthew Jones, Chriswolf, JPV and 7 others like this.
  3. OverTheHills

    OverTheHills

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    Congratulations!
     
    joe4211 and daisybell like this.
  4. Adele

    Adele

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    That is great @daisybell ! :) Has the improvement continued?
     
  5. daisybell

    daisybell Senior Member

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    Unfortunately no... But I have had some other medical issues going on. I am better on the LDN than without it but not as good as I was....
     
  6. Adele

    Adele

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    Sorry to hear that :( But good that it at least has some remaining effect.
     
  7. 2Cor.12:9

    2Cor.12:9

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    Great idea! I'm on day 5 so this is really helpful. Thanks.
     
  8. 2Cor.12:9

    2Cor.12:9

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    Hi Marlene - I know this is a very old post, but I am curious as to how you are doing now. Are you still on LDN?
     
  9. panckage

    panckage Senior Member

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    Well sad news for me. While LDN pretty much eliminated by brain fog, made me euphoric, and gave me the sex drive of a teenager for about a month, it didn't last.

    Since that time I've slowly drifted back to my (almost) hobbyless life... For the last week I've pretty much just spent on the couch. I detect no positive effects of LDN anymore.

    I've started playing with the dosage again to see if it can make a difference. I've read on the LDN faq that tolerance can be built towards it so I'm planning to take a month or 2 off to test that

    Actually though I think there is still a positive. Marijuana and kratom still seem to work better with LDN
     
  10. *GG*

    *GG* Senior Member

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    Did you go up to 4.5 mg a day?

    GG
     
  11. Mouse girl

    Mouse girl

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    Made me much much worse. And the sick part of it is that it slowly made me worse so I didn't realize just how bad I was doing until the pain was so bad, I was taking pain meds all day everyday (it was brutally obvious that the pain was worse). Then I wrote down all the symptoms I was having and realized just how badly I was doing. I could barely do anything, made everything massively worse and did it so sneakily, I was sooo livid at that drug. Never felt so angry about something making me so ill because it snuck up on me and slowly did it. Vile vile drug. Felt much better when I got off it but took time to heal from the terrible set back it caused.

    I honestly haven't known anyone with classic CFS/ME/SIED who has done better on it. I know some lymies and patients with MS or other fatiguing illnesses but never met anyone in 22 years who has classic CFS who found help with it. Just my two cents though, certainly might be helping some who do have classic CFS.

    I think a huge problem is that patients post when something might be helping or patients with some sort of illness that isn't really CFS post that it was life changing but you never end up hearing from people who found out after awhile, that no, didn't help. Seams that is a huge problem with "treatments". If you read things online, seams everything helps someone but there really aren't treatments unless you get to see Peterson or something in the early years.
     
  12. panckage

    panckage Senior Member

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    I think I only got up to 4mg but I started to get more fatigued at that dosage. Whether or not that was due to LDN I can't say. I ended up stabilizing at 3mg. Now I'm playing with the dosage again to see if it makes any difference
     
  13. *GG*

    *GG* Senior Member

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    That seems pretty much the same. Were you at 4mg for long?

    GG
     
  14. place

    place Be Strong!

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    Just wanted to add my two cents. When I was pregnant And/ or Breast-feeding I lost a lot of symptom. Knowing the immunity effect, I just started Ldn. On day 4 and getting a lot of sinus stuff. I take it in morning due to sleep issues
     
  15. Chriswolf

    Chriswolf Senior Member

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    Pretty good for me.

    Out of the gate I've been only on it for a week and at 0.5mg I noticed very short term improvements that caused me to over do it and crash on the fourth day.

    My only concern is my dry eyes/mouth GI issues seemed to get a bit worse, I'm trying to figure out how to manage that while staying on LDN because it definitely is helping.
     
    2Cor.12:9 and *GG* like this.
  16. 2Cor.12:9

    2Cor.12:9

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    I've been on LDN for 7 months and quit taking it 2 days ago because of disabling fatigue (but then I do have CFS -just not always this bad).

    I had started at .5 and slowly increased to 4.0 but backed down to 3.0 and again to 1.0.
    The higher doses made me even more tired and feeling generally more awful. I stayed at 1.0 for the past several months.

    It's been a very frustrating journey because LDN truly has worked very well on several levels.
    It completely illuminated muscle and back pain but did NOTHING for the fatigue. Seemed to make it worse! All other possible causes for the fatigue have been investigated and treated (thyroid/nutrition/probiotics/supplements, etc.)

    LDN also made my heart palpitations worse but improved my sleep. I'm sure it was responsible for warding off a number of nasty viruses that went around the family. The only one that I did get lasted just a couple days - very unusual for me as I'm prone to severe bronchitis.

    I've been off LDN for 2 days now and my achy muscles are coming back. The fatigue is only slightly better, so I don't know what to do.

    If I decide to go back on it I think I will see if I can get the same benefits with just .5.
     
  17. Chriswolf

    Chriswolf Senior Member

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    I've heard some people basically say that after a time the LDN on a consistent dosing schedule doesn't work, you could try staggered dosing by trying it at low levels on alternating intervals based on what you think might help.

    Whether that's every other day, every two days, every three days, who knows, however as I mentioned some people have said that it may be that the body becomes accustomed to it and you may need to try and balance the positive effect with that potential outcome.
     
    2Cor.12:9 likes this.
  18. helios

    helios

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    This was the case for me alas. My doctor started me out at the top dose 4mg I think. I was not a fan of it at first as it interfered with my sleep plus I had depressing dreams, but as the months went on my health picked up (cant say it was all due to LDN, I thought Kefir helped more). I certainly knew I was on it though. To try to get better quality sleep and less depressing dreams, I cut the dose back to 2mg a night for 4 nights a week. As the weeks went on it seemed like it made less difference. I then ran out and ordered some more a month later and started on the full 4mg again, Nothing. No interrupted sleep (waking at 3am + 4am) and no bad dreams, and no pick up in health or energy. I then read up how if someone has candida supposedly that blocks LDN from working properly. I had been on ABx when I was first on LDN, but then stopped and was haphazard in probiotic use and feel I was suffering from excess fungal/candida growth. I put the LDN in the fridge until I tackle the candida issue better.
     
  19. Chriswolf

    Chriswolf Senior Member

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    I've had to reduce my dosage of LDN pretty far now, I was starting to experience some weird side effects described by others as "emotional flatness", I'm actually now down to an "ultra low dose" of 0.20 ml and it seems to be working better.

    The dehydration has reduced as well as the perceived anhedonia, I'm back to being able to get straight out of bed upon waking as opposed to feeling dizzy, exhausted, with an unpleasant sensation of feeling very dehydrated all over, ranging from my eyes to my muscles.

    For me it isn't surprising as I seem to be very sensitive to medication, it may also well be the formulation of the LDN I'm taking, but it felt as if the opioid blocking effects persisted a very long time at higher doses at times when I should be experiencing the "bounce back" endorphin recovery phase.

    I also wouldn't use probiotics while using LDN, I think any sort of excess of bacteria is no good if you're using it, good or bad.

    I use caprylic acid, black seed oil, oil of oregano and a bulking agent to clear my GI tract every now and again.

    Of course I don't use all three at once all the time, but at intervals based on how my guts are performing.

    Also try laying off the sugars and give it another go, possibly start a 0.50 for a few weeks and see what happens.
     
    Last edited: Apr 22, 2016
    2Cor.12:9 likes this.
  20. daisybell

    daisybell Senior Member

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    Just wanted to share here that I have recently increased my LDN dose and am feeling better for it. I now take one 4.5mg capsule in the evening, and two capsules first thing in the morning. It's not really a low dose anymore, but taking it at this level seems to suit me. I am currently needing to be more active due to family circumstances, and have been expecting a crash. However, adding the evening LDN dose seems to have averted that crash.
     
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