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LDN seems to be working

Discussion in 'Antivirals, Antibiotics and Immune Modulators' started by Dechi, Apr 5, 2019.

  1. Alvin

    Alvin Senior Member (Voting Rights)

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    None that i know of. The standard chains all seem to have to dispense in physical stores.
    It might be by law?
     
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  2. Silvermachine

    Silvermachine New Member

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    I'm pretty sure LDN has had an effect on my cognitive abilities/brain fog. I take 3 mg just before going to sleep. I keep detailed symptoms diary. Every day I answer yes or no to the question: have I had to quit a simple task/daily activity (conversation, reading magazine, sorting stuff, writing email) due to cognitive problems? Here is a bar chart showing the percentage of yeses in a given month. The months I've taken naltrexone are marked yellow.

    On the other hand it hasn't had much of an effect on my physical abilities. Here is also a bar chart showing my average walking speed in km/h. cogimpnaltrexone.png walkingspeed.png
     
    Last edited: Apr 9, 2019
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  3. Dechi

    Dechi Senior Member (Voting Rights)

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    @Silvermachine nice statistics ! It’s too early for me but it seems to be helping. Increasing to 2 mg 2 days ago gave me a cognitive boost.
     
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  4. Sbag

    Sbag Senior Member (Voting Rights)

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  5. Trish

    Trish Moderator Staff Member

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  6. hinterland

    hinterland Senior Member (Voting Rights)

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    My reading is that while the Pharmacist consultation service is no longer available; private GP telephone consultations are still available at a cost of £35. :thumbup:
     
  7. Wonko

    Wonko Senior Member (Voting Rights)

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    Seems quite expensive to fill in a form, other online consultations are typically in the couple of quid range. All they seem to do is look for red flags and if non are found rubber stamp the authorisation. A few minutes at most, even if their software doesn't prescreen. £35?

    LDN is relatively safe, compared with some of the other things that can be bought using an online consultation, so I have to wonder why it's so expensive to get a prescription.

    Are they the only game in town, no competition, and they've decided it's a cash cow?
     
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  8. hinterland

    hinterland Senior Member (Voting Rights)

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    I've tried LDN 2 or 3 times in my lifetime.

    The first consignment was titrated and encapsulated by a compounding pharmacy in the US, and shipped to me, here in the UK. It did nothing... Nothing at all. I can't really be sure what was in the capsules. I relegated LDN to the domain of failed treatments for the next 15 years (it sounded too good to be true anyway).

    The second batch of LDN arrived courtesy of Breakspear Hospital, supplied by a Scottish pharmacy, but not Dickson Chemist, another one, whose name I can't recall right now. 3mg capsules. Hmm, it appeared to have some bioactivity... interesting! But I couldn't be sure, and had other treatments queued up. Another 2 years passed by.

    Then I got word of Dickson Chemist and the set up there (availability of GP telephone consultation), and managed to get my head together and follow the process to obtain myself some of their finest LDN. It comes as a sort of cough medicine liquid that you can measure out with an oral syringe, to ramp up your dose. I can tell you that Dickson know what they're doing when it comes to LDN. This stuff had far more impact than my previous ventures into LDN. There may be various reasons for this, one of which is that it's important the naltrexone be rapidly absorped to convincingly yet temporarily block the opioid receptors.

    What benefits did I get? Reduced inflammation, and what I felt could be reduced neuroinflammation (if that's a thing) - improved cognition and I felt more like my old self, from a long time ago, it was a weird sense of revisiting my old self. So; less body ache, brain working better, more energy, able to accomplish more with my time. Oh yes, I've just remembered, better gut function, it cleared up some mild IBS symptoms I'd had for several years.

    All of this lasted about 6 weeks, then started tailing off and then I got a respiratory infection (upper respiratory tract infections are the bane of my life, so it was very unusual to go 6 weeks in November/ December without one, up to this point). I continued to take LDN for 3 to 6 months on and off, no longer sure if it was providing an overall benefit. The problem I had with it eventually, which is an issue with many meds/ supplements I try (following adverse effects of Ciprofloxacin, and Roaccutane), is that it caused drying out of mucous membranes, and this may have increased my susceptibility to/ diminished ability to recover from respiratory infections, in my case.

    Otherwise, I didn't experience any significant side effects or problems with the LDN, only slightly disrupted sleep when becoming accustomed to the dosage and, maybe, more vivid dreams.

    I would welcome a clinical trial into the use of LDN for ME/CFS.
     
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  9. Binkie4

    Binkie4 Senior Member (Voting Rights)

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    Sleep is the problem for me. Have had to stop again because of significant sleep disruption. Will try again after a break because I think , not sure, there could be positive effects. Will elaborate later once home.
     
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  10. andypants

    andypants Senior Member (Voting Rights)

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    That is exactly what it feels like. No idea if it’s correct or not, but that’s the way I would describe it.

    Try taking it in the morning/afternoon? I can’t take it less than 2 hours before bedtime or I can’t sleep at all.
     
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  11. Dechi

    Dechi Senior Member (Voting Rights)

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    I’ve increased to 2.5 mg 3 days ago. It seems that every time I increase, I get a « high » for a few days, then it stops. Like today, I sort of feel better even if I had some blood drawn twice.

    It hasn’t lasted for now, but it’s still very early so I can’t help but still hope this will give me my life back. Or part of it.
     
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  12. Dechi

    Dechi Senior Member (Voting Rights)

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    Update. I started 3.0 mg today. My depression is bad, but it is probably just a coincidence since it has happened every spring for the last 4 years.

    On the other hand, the pain is still a whole lot better. I still have some, but it’s minor. I think my pain was fibro pain, and not ME pain. Not that it matters.

    My energy levels have been good also for the past two days. Yesterday I have been able to rake leaves and mow the lawn (not at once, but still). Maybe 45 minutes of raking and 10 minutes of mowing, with lots of rest in between. And today I had to move 3 sets of car tires and it was not a problem. I didn’t crash afterwards. I slept in the afternoon but I often do.

    I this the start of something ? Time will tell.
     
  13. Binkie4

    Binkie4 Senior Member (Voting Rights)

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    Am continuing to take LDN aiming to get to 4.5 daily but i’ve hit a few problems. Stopped/ reduced for a while because of sleep problems but that has improved apart from vivid dreams which I can remember! I can manage that.

    Saw doctor last week and made next step up to 2.5 daily, but have had severe Diarrhea, a bit headachy. Anyone else had this reaction? Would like to continue if possible because I had a transient strong improvement in cognitive functioning in early stage. Have been really unwell today so need to decide whether to continue.

    Grateful for any responses.

    ETA: how are you @Dechi?
     
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  14. Dechi

    Dechi Senior Member (Voting Rights)

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    I haven’t had any, quite the contrary, my stools are now firm and they hadn’t been for two years. But in all honesty, it could also be due to a garlic/alcohol mixture I take every day. Or drinking kefir.

    I’m now at 3,5 mg, but I have been overdoing it the past weeks and crashed. I also had severe gastric problems on top. Today was my first okay day for a good two weeks, so I’m happy about that. Thank you for asking. I hope LDN works for you. Right now I can’t tell if it’s working for ME but it’s taking away a layer of fibro pain.
     
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  15. Binkie4

    Binkie4 Senior Member (Voting Rights)

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    Thanks @Dechi. I hope your good results with LDN return.
    I’m hoping it will help with pem, OI, cognitive issues not so much pain because I don’t have fibromyalgia. I’ll see how I get on later and decide whether to have a break or continue right through.
     
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  16. Binkie4

    Binkie4 Senior Member (Voting Rights)

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    https://www.ldnresearchtrust.org/how-naltrexone-works

    Found a link that describes how LDN works and that some people respond by Diarrhea/ nausea which fits my symptoms, and advises slow increases. I am already following this, only increasing by 0.5 at a time, so have decided to continue today.
    If I have the same response as yesterday, ( it was severe), i’ll have to rethink.
     
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  17. Dechi

    Dechi Senior Member (Voting Rights)

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    @Binkie4 Maybe you’re just passed your optimal dose and need to decrease and stay there.

    How are you today ?
     
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  18. Binkie4

    Binkie4 Senior Member (Voting Rights)

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    @Dechi
    Thanks for asking. I continued at 2.5 yesterday and Saturday, and fingers crossed got away with it. Won’t make another increase for a week or so then try again to add 0.5.
    A nurse came out on Fri and am waiting for results of samples because I had a rash as well as gastric symptoms. Diagnosis is confusing.
    Hope you continue with ok days.
     
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  19. Dechi

    Dechi Senior Member (Voting Rights)

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    For me it’s never a straight line. Okay days, bad days, I never know.

    Funny I’ve been having gastric problems too. Severe enough to have me worried.
     
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  20. Binkie4

    Binkie4 Senior Member (Voting Rights)

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    @Dechi
    Hope you improve soon. Are you connecting your gastric problems with the LDN? I don’t know what to make of it but it’s calming down and i’ve Kept going. I will do the next increase very carefully. I so want it to work, to give me some improvement.
     
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