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David Tuller - Trial By Error: This Year’s US Clinician Summit

Discussion in 'General ME/CFS news' started by Cheshire, Apr 2, 2019.

  1. Trish

    Trish Moderator Staff Member

    Messages:
    52,291
    Location:
    UK
    Moderator note: There is more discussion of people's experiences with LDN on this thread:
    LDN seems to be working
     
    Yessica, andypants and hinterland like this.
  2. Binkie4

    Binkie4 Senior Member (Voting Rights)

    Messages:
    2,338
    Have posted my experiences on the other LDN thread. Basically I managed 6 weeks at 2.0 titrated up from 0.5. When I moved up to 2.5, I had severe gastric symptoms. Stopped for 2 weeks then restarted at 2.0 but within 2 hours, I had severe gastric upset, insomnia.

    Feeling frustrated because it was certainly helping cognitive function which has deteriorated again. Am trying to get it prescribed sublingually. Fingers crossed.

    Does anyone know when we might expect results from the research planned at the clinicians’ summit? Do we know how the research will take place?
     
    MEMarge and Yessica like this.
  3. Dancer

    Dancer Established Member (Voting Rights)

    Messages:
    49
    Location:
    Midwest, USA
    I had the same problem with stomach pain after being on LDN - but my integrative health doc prescribed a topical cream of LDN that I applied each night. Really seemed to nudge things the right direction (and no side effects) for several months, then stopped being effective. (That seems to happen with a lot of things I try). Anyway, I thought I'd mention that there are compounding pharmacies that can make LDN cream. It came in syringes, so I'd squeeze out the correct amount to rub in to my forearm.
     
  4. Binkie4

    Binkie4 Senior Member (Voting Rights)

    Messages:
    2,338
    Thanks @Dancer.
    I hope i’ll be able to get a prescription for either the sublingual drops or cream, both of which are available at the pharmacy in Scotland.
     
    MEMarge, Yessica, Dancer and 2 others like this.

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