Surprisingly good outcomes for people who get ME/CFS after Mononucleosis (Glandular Fever)
Sometimes ME/CFS emerges after mononucleosis, or glandular fever. Simon McGrath shares results from a long-term follow-up study from Haukeland University Hospital in Norway...
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Low dose Naltrexone

Discussion in 'General Treatment' started by Cort, Jul 22, 2009.

  1. madietodd

    madietodd Senior Member

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    I started again at 0.1mg on the 13th. The next morning I had a killer headache, felt off-balance (but not spinning like vertigo), and nauseous. I haven't taken it since, but I had the headache for 5 days. The nausea went away quickly, and I've still got a tiny bit of the confusion about balance.
     
    heapsreal likes this.
  2. daisybell

    daisybell Senior Member

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    Started at 2.25mg yesterday morning, and had the best day I've had for several months... About to take this morning's dose and hoping that yesterday wasn't a flukey coincidence!
     
  3. SDSue

    SDSue Southeast

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    3 months into LDN, (1.5 mg x 1 mth; 3.0 mg x 1 mth; 4.5 mg x 1 mth - will stay at 4.5 indefinitely)

    Improvements:

    * sleep - much improved (after initial insomnia with each dose increase)
    * anxiety - MUCH improved!!!
    * motivation - much improved; actually have a desire to accomplish things (desire, not necessarily ability)
    * incontinence - virtually gone
    * headaches - much improved (after initial worsening for a few days with each dose increase)
    * ability to communicate face to face - slightly improved, but still PEM's me
    * POTS - improved (not taking any POTS-specific drugs for now)
    * PEM - not as severe
    * sugar cravings - much improved

    I believe these changes are due to the LDN, but then again I always feel a bit better in the Autumn. Time will tell - but I've actually been able to leave my home once or twice a week for very short durations.

    In addition to the LDN, I've also been on Inosine for 3 months, so that could be a contributor - but I always feel better on my scheduled breaks from the Inosine.

    I remain unable to tolerate folate and/or B-12.

    And so it goes.
     
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  4. daisybell

    daisybell Senior Member

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    I'm up to 4.5mg, having stared on half that for the first week.
    Initial side effects included stomach cramps and loss of appetite, but that seems to be settling down well. I have noticed some insomnia but nothing I'm worried about.

    I definitely have more energy, and particularly less brain fog which is great. The only thing I'm not sure about is how much this is just down to the LDN, and how much might be due to my thyroid levels being raised... Also I am concerned that the doctor may not be happy for me to stay on the LDN given I am hyperthyroid.. Time will tell!
     
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  5. knackers323

    knackers323 Senior Member

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    @Sushi and others, anyone know where to get the compounded form without prescription on the net?
     
  6. madietodd

    madietodd Senior Member

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    I gave up on the crushed pills, and started taking compounded LDN drops about 3 weeks ago. I started at 0.1mg and have worked up to 0.4mg, in the morning. I haven't had the headaches, no changes to my insomnia, huge uptick in daytime energy.

    I've had a major struggle with cold-like, seasonal allergy-like symptoms, so I'm sticking with this dose until that all clears up.
     
    Last edited: Nov 21, 2014
  7. Ema

    Ema Senior Member

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  8. fibrodude84

    fibrodude84 Senior Member

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    Starting LDN next week. Starting low and going up. So excited to join the club. I'll give my results.
     
  9. knackers323

    knackers323 Senior Member

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    @Ema thanks. I only see the 4.5 mg dose. For those that want to take a smaller dose do we open the capsule up and dose that way?
     
  10. Ema

    Ema Senior Member

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    I would think you would have to unfortunately. I would check with them first though I can't see why opening them would be an issue.
     
  11. daisybell

    daisybell Senior Member

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    That's what I did... No problems except that it isn't very easy to know exactly how much you are taking!
     
  12. ahmo

    ahmo Senior Member

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    the Yahoo lowdosenaltrexone group posts online providers of LDN. If you join, you can search the forum. If you don't find what you want, ask it again, but I know the topic's been up during the last couple months.

    I open my 3mg capsules. Early on I opened them to pour out tiny amounts, now I open them to create .5mg doses as I'm increasing slowly from 3. No problem. Again, on the forum you can find suggestions re how to use 50mg tablets in solution if that's the only source you find.

    Here's what I posted to that forum today: (And I craeted a new way for me to refer to the illness: ME/(cfs)...maybe that should be ME(/cfs).;)

    I began LDN in July, starting with match-head size doses. I have ME/(cfs), I've followed a variety of protocols during the last 3 years that have returned me to the land of the living. I've found, as have many others w/ ME, that LDN easily sets off detox reactions. I've had plenty of that, but had already been deeply engaged in a detox protocol for the whole of this year. At the end of August I reached 3mg, 2 1/2 months. I've increased to 3.5 during the past 5 days. I'll continue to 4.5 or until I get signals to stop here and now.

    What I've gotten w/ LDN is greatly increased stamina and resilience. I can only assume that the deep autoimmune inflammatory process I had has now been alleviated. My body no longer has to struggle in some deep metabolic process, and so has more energy for me to function in the world. I am very grateful.
     
  13. bertiedog

    bertiedog Senior Member

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    LDN at only 1.2 mg also seems to give me a lot better stamina and energy and endurance. I am also 3 months into a modified Cowden protocol which also seems to be helping my immune system cos so far I haven't suffered with the usual viruses I get this time of the year.

    I have been on LDN for 5 months now and I am still sensitive to the dose I take hence I have not raised the dose to more than 1.2 mg.

    I am always worried when I write positive reviews because in the past things have often slid back but it does rather seem that I am consistently better with only 2 bad days (due to severe migraines) in the past month.

    Pam
     
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  14. ahmo

    ahmo Senior Member

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    Re taking small doses, here's something I've copied from the yahoo forum. I was working w/ 3mg capsules, diluted it for small doses. Later I used those empty capsules, so now I fump 1/3 of a 3mg capsule into one of these empties, and can then divide that easily in half, into another empty, for my 5mg dose. Confusing??:confused:
    @knackers323 Copying some info from today's yahoo forum re where to buy:
     
  15. knackers323

    knackers323 Senior Member

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    Does taking LDN have any effect on urine drug tests?
     
  16. wastwater

    wastwater Senior Member

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    Does cannabidol work in a similar way to LDN could it be a substitute as LDN needs a prescription
     
  17. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    I don't think anyone yet fully understands how LDN works. But it is known to temporarily block the opiod receptors (for a few hours) so this would seem like a different mechanism.

    LDN does need a prescription unless you buy it from India, but there are enough studies of its benefits that many doctors are willing to prescribe it.

    Sushi
     
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  18. madietodd

    madietodd Senior Member

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    Just an update........I ran out of my compounded liquid and dissolved one of my 50mg tablets in water and have been taking that. I was at 0.6 from the pharmacy, but have had to increase rapidly to .75 with the tablet. My doctor is back and I'll be getting the compounded version again in a few days. I'm interested to see if I need to revert to the lower dose.

    Remember that my worst days had me mostly on the couch but overall still able to feed myself and get out when necessary (I don't have OI)....I'm putting my house on the market. I just spent 6 hours sorting out and cleaning one room. After 2 months on LDN I feel confident enough of its effects that I'm finally able to move out of this house that feels so big with all the kids gone.

    I've still got some brain-glitches, and I don't do heavy work like mopping/vacuuming. I pace myself. But a year ago at this time I was reading on the couch or sitting doing jigsaw puzzles all day, with no mental or physical stamina.
     
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  19. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Maaadddie sounds good. Big thing moving house. Our youngest has 3 yrs left of school and I want to down size and move out to the country where house prices are cheaper too. Stressful thinking about it.

    I'm glad ldn is helping you, it seem to take awhile before you found something helpful.
     
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  20. minkeygirl

    minkeygirl Narcissism = lack of self awareness

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    @madietodd I can't afford compounded so I get the 50 mgs, crush them and put them in 50 ml water and then use a 10 ml syringe to draw off what I need. You can keep the liquid in the fridge for a month (per some earlier threads here).

    Glad you figured it out. I'm hoping I'll have better luck with the LDN this time. I stopped after a few months when I crashed and was trying to figure out what was what.
     
    madietodd likes this.

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