Professor & patients' paper on the solvable biological challenge of ME/CFS: reader-friendly version
Simon McGrath provides a patient-friendly version of a peer-reviewed paper which highlights some of the most promising biomedical research on ME/CFS ...
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LDN

Discussion in 'General ME/CFS Discussion' started by digital dog, Sep 22, 2015.

  1. digital dog

    digital dog Senior Member

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    I am going to start taking LDN. Having read almost everything I can about it on the web, I've decided it is worth risking. I am VERY sensitive to meds and extremely susceptible to insomnia so I am scared.I am going to start ridiculously low and work my way up slowly (if possible).

    The thing that worries me most is the loss of hope if this does not work.

    Anyone else trying this soon?

    DD
     
  2. minkeygirl

    minkeygirl But I Look So Good.

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    Left Coast
    @Mary just started and posted about it. Lots of people here on it. @Sushi started really low. I started at .5 and had to stop and start a few times.

    After 6 months I never benefited but many here have.

    Type LDN in the search bar and you'll find lots of convos about it.
     
  3. digital dog

    digital dog Senior Member

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    Thank you Minkey girl. Im so sorry you didn't benefit from it. It's so heartbreaking when we get our hopes up that something may help us.
    Did you have any withdrawal when you came off?
    DD
     
  4. minkeygirl

    minkeygirl But I Look So Good.

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    I never get my hopes up about anything. If something helps, good. If not on to the best thing

    I didn't notice withdrawal. And like an idiot I just stopped it. I thought I read it only stays in our systems a few hours so maybe that's why

    If you want to tag someone. Put the @ in front if their user name @digital dog then they get an alert. I have no clue what I'm doing half the time so I need a reminder
     
  5. digital dog

    digital dog Senior Member

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    Thanks Minkeygirl.
    I can't help getting my hopes up but I am realistic about things and time has taught me that very little helps.
     
  6. ahmo

    ahmo Senior Member

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    I started by emptying out match-head amounts from capsule,doubled this day by day. Even at this asmount, I initially had disrupted sleep, and detox reaction. I was prepared for detox, handled it w/ my stand-by, coffee enemas. Stabilized at 4mg. Definitely increased my stamina.
     
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  7. digital dog

    digital dog Senior Member

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    Thank you Ahmo. This is good to hear.
    I am glad that it helps you. Some stamina would be wonderful.
    Have you had to lower your thyroid meds? Did your antibodies come down dramatically?
     
  8. lnester7

    lnester7 Seven

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    where can one buy LDN online, easy???
     
  9. digital dog

    digital dog Senior Member

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    Where do you live Inester?
     
  10. ahmo

    ahmo Senior Member

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    No. In fact, as my adrenals have gotten healthier, I've been able to increase my T3, which has been helpful. Haven't measured antibodies. I consider my thyroid pretty much non-functional. Not active Hashimoto's.
    alldaychemist.com from India. You can leave the section asking for rx blank. Delivered really quickly.

    What you get are packets of 50mg Naltrexone. You dilute this w/ 50ml distilled water, giving you 1mg/1ml LDN.
     
  11. 2Cor.12:9

    2Cor.12:9 Senior Member

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    Hi DDog- I'm on my 5th week for FM/ME/CFS plus I have Hashi's. Don't be scared. My doctor and I are following the guideline dosing sheet put out by the LDN Research Trust which recommends ME/CFS/Hashimoto's patients to start at .5 and increase every week by .5 till you get to 4.5 (or less if one feels better).
    I'm at 2.5.

    LDN has been very interesting. The first night I woke up feeling like I had the flu but it went away by morning. The 2nd night I woke up real early and was wired, which concerned me because I have sleep issues too. But that only lasted one night and since then I sleep like a log!

    The following week or two I felt kind of weird and spacey. One day I had double vision, which scared me but I wasn't about to quit unless things got worse. It went away.

    Benefits so far:

    Huge pain reduction (FM) - When I started LDN I had extremely painful tendonitis plus bad lower back and morning stiffness. I'd been on prescription strength Alieve for 6 months, which hardly touched it, but now rarely even have to take it.

    I've also experienced major improvement in cognitive function and also in mood. I had started to become depressed with this relapse but LDN really leveled out my emotions and gives me a sense of calm.

    I hadn't been to church in months but have been able to go.

    My fatigue is still bad and I'm still lying down most of the time, but there's no way I'm giving this up. They say to be patient.

    You have nothing to lose by trying it. It's a very safe drug.
    Best wishes!

    OH, and one more benefit - it has helped to curb my appetite - which is a good thing for me. :)
     
    Last edited: Sep 24, 2015
    panckage likes this.
  12. digital dog

    digital dog Senior Member

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    Oh this is good. Congratulations in finding something that helps you :balloons:
    It must be so good to come off painkillers. That will be really good for your body.
    I've just ordered some...eeeekkkkkk!
     
    2Cor.12:9 likes this.

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