Lipkin's Monster ME/CFS Study: Microbes, Immunity & Big Data
The Microbe Discovery Project outlines an ambitious new study by top researchers that has collected patient samples, but needs desperately funds to complete the work.
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Jarred Younger lab Feb 2016 Newsletter - live Q&A March 3rd

Discussion in 'General ME/CFS News' started by Sasha, Feb 23, 2016.

  1. Sasha

    Sasha Fine, thank you

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    From an email to newsletter subscribers:

     
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  2. Marky90

    Marky90 Science breeds knowledge, opinion breeds ignorance

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    I`m pretty sure the LDN trial will be futile..
     
    Sidereal, cigana and Never Give Up like this.
  3. Sasha

    Sasha Fine, thank you

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    Just received a correction:

     
  4. Riley

    Riley Senior Member

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    Yeah. I know 7 or 8 patients who've all tried it and none benefited.

    I have heard second hand that it is helpful for fibro pain though.
     
    Marky90 likes this.
  5. Sasha

    Sasha Fine, thank you

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    I didn't benefit either but I think that some people here on the forum have done so. I think it needs a trial, and one with good measurements of biochemistry to identify probable responders.
     
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  6. Old Bones

    Old Bones Senior Member

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    So far, the only benefit I've derived from LDN relates to my rheumatoid arthritis (less stiffness in my hands). My ME symptoms are unchanged, and at a dose of more than 2 mg it worsens my already-disrupted sleep.
     
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  7. Marky90

    Marky90 Science breeds knowledge, opinion breeds ignorance

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    Yea pain benefit seems to be the only reasonably consistent response reported
     
  8. viggster

    viggster Senior Member

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    Yep, LDN definitely helps my pain, but it took a month or so to work. I know it's working because when I go off it, after 2-3 days really bad leg pain returns.
     
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  9. Bob

    Bob

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    mango, Sasha and Scarecrow like this.
  10. Sasha

    Sasha Fine, thank you

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    Thanks, Bob - totally forgot that.

    CST is 6 hours behind the UK so I make that 9pm UK time.
     
    Bob likes this.
  11. usedtobeperkytina

    usedtobeperkytina Senior Member

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  12. Justin30

    Justin30 Senior Member

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    I like the idea of neuroinflamation and figure this is huge component to the overall dysfunction:

    I would like to see experiments with drugs that work on issues on the CNS,SNS and ANS that are directly correlated to neuroinflamtion. Ie does neuroinflamtion cause Dyautonomia, blured vision and disturbances of vision, twitching of muscles, muscle wasting, numness and circulatory issues, etc.

    I like the neuroinflamtion hypothesis but would like it to expand on more than just pain....and what we call "Fatigue" how about reffering to it as Post Exertional Neuro Immune Malise....I dont like everyone calling this fatigue...FATIGUE...it goes far beyond fatigue for the vast majority of peole with ME/CFS.

    The reason we are not seeing great results out is that patient screening using strict criteria CCC and ruling out and treating coinfections and comorbidities. And LDN on its own only hits one part of the multisystem disease MECFS is. This is why we desperately need more funds rwsearch and training to get experts to issue staged PROTOCOLS.

    I met a guy that was bedbound for 6 plus months out of bed using LDN and Oxymatrine. He could literally walk through the hospital without a wheelchair i was in awe....i was so messed up at the time though...i we didnt have long to talk.
     
  13. Jill

    Jill Senior Member

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    I have been helped by LDN. Been on it over 6 years now. It stuffed aroundith my sleep but it didn't matter because at the time sleep didn't help jot. Do't give up on it if it effects sleep -that means its working!
    What it did for me was enable me to feel more resilient to stress, especially in the morning. Prior to it, I had to move very slowly and was never awake before 10 am. The was no chance of me beoing able o make appointments inth mornings. That was my pattern for years - 15 years. I'd hv maybe 3 good hours 11-3, then up again in the evening. LDN changed all that. I actually have morning now. I still have crashes and relapses but LDN and voltatern are the only things to have moved the illness in any way for me.
    A gp locally gives people an injection of naloxone and if the injection helps he uses that as an indicator as to whether tabs will help them.
    I buy from Canada and mix 50mg tab in 50ml water, and draw up 4.5 mg into a syringe to take it. Take it about 9pm.
     
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  14. *GG*

    *GG* Senior Member

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    I should consider this. It would cost me $150 dollars to get LDN, that would last me 3 months. But think making it would be much cheaper! Have a website you order from?

    GG
     
    Jill likes this.
  15. Jill

    Jill Senior Member

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    Hi there,
    I order naloxone from River Pharmacy in Canada. When it arrives is been shipped from india, Sometimes customs here in NZ open it and require that my GP signs a form that its kosher. Our com[pounding pharmacist is such a rip off. Charges about 1$ a capsule. Its about 30c if you draw up 4.5 mg into a syringe. Someone has done a utube clip onhow to make LDN. I don't even use distilled water anymore
     
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  16. Jill

    Jill Senior Member

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    the other thing ive personslly found that helps is diclofenac 75mg slow release. Yiu'd know in 3 days of trying it. HElps my pain a lot. I'm still up and sown like a yoyo but the pain is tonnes better. Can't gt anyone to listen - no surprises there. Just had an email from a friend tonight saying he's been helped by another slow release nsaid and did I know of anything else he could try. Maybe I'm not wrong....
     
  17. *GG*

    *GG* Senior Member

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    Thanks, I know how to make it. Former Chemist here, so no problem there, well versed in all that. Did you set up an account or just order from the site?

    Tried getting to their Facebook page as well, but that wouldn't load, wonder if I need to have an account to see what they post?

    GG

    Edit: So it would appear that Naltima or Nodict is ok to order? I would lean towards Naltima, thinking Nodict might be changed to make it harder to compound?

    Edit: I was wrong, looks like Nodict is the version I want to order. So is there a cheaper source for this? Looking at geting 60-50mg tablets for $177, no charge for shipping. Would be 3.54 per tablet.
     
    Last edited: Mar 8, 2016
  18. Jill

    Jill Senior Member

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    Hi there, Nodict is the one I ordered. Sorry I was quoting NZ prices - duh.
    Your price would be 3.54 per tablet, that provides you with 50mg tabs (50mg dissolved in 50 ml), so you have 4.5ml to draw up per dose (so over 10 doses per tab) , so 0.354$ US per dose.
    Hope that makes sense and clarifies?
     

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