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LDN seems to be working

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

  1. Dechi

    Dechi Senior Member (Voting Rights)

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    I started LDN about 5-6 weeks ago. I started slow, had to go down because of constant headaches and now I’m at 1.5 mg every morning. My plan is to go up to about 3.5 to 4.5 mg or whatever works.

    When I reached about 1.0 mg I started being more exhausted and all my other symtpoms remained. Then about 4 days ago, 1 week after starting 1.5 mg, I stopped being dizzy and feeling so crappy and dead when I woke up in the morning. I can’t say I feel refreshed but I don’t feel as bad. My brain fog is also almost gone and even if I overdo it, cognitive problems won’t be nearly as bad. I can do more brain work too.

    Before I used to nap about 3-4 times a week in the afternoon. Now since LDN, I have to sleep every afternoon. I wonder if I feel better because I sleep more in the afternoon ? I haven’t been sleeping more during the night, sometimes even less the past few days because I had early appointments.

    We’ll see how it goes, it’s still early. I’ve had good weeks before and it didn’t last. I’m still happy about it, no matter what happens. It’s good to feel almost normal for a change... :)
     
  2. InitialConditions

    InitialConditions Senior Member (Voting Rights)

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    glad you've had a good few weeks. I'd agree that you need to give this much longer, given the cycle of worse and better weeks/days that so many of us have. let us know how you get on!
     
  3. ScottTriGuy

    ScottTriGuy Senior Member (Voting Rights)

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    Excellent, I hope your improvements continue.

    Fwiw, I tapered off LDN last fall because I wasn't sure if it was doing any thing.

    It was. My sleep worsened, and waking up nauseous was more intense.

    So I eased back onto LDN (4.5ml) , sleeping better (still not great) and less waking intense nausea (but still nauseous).

    I note you said '1.0 mg'. Are you dissolving the capsules in water and measuring your dose that way?
     
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  4. Alvin

    Alvin Senior Member (Voting Rights)

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    Glad to hear its working! :hug:

    How did you get it?
    My new GP agreed to prescribe it but the provincial drug coverage will only pay for it if i were addicted to alcohol. Otherwise its $300 a bottle :eek:
    I was thinking i could become an alcoholic so then it would be covered :woot:
     
    Last edited: Apr 5, 2019
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  5. Wonko

    Wonko Senior Member (Voting Rights)

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    Alcohol is quite expensive, and rarely covered by insurance.
     
  6. Alvin

    Alvin Senior Member (Voting Rights)

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    That is the big problem with my plan :D
    Perhaps i can replace my food calories with alcohol calories. Nutrients are an issue but that would only backstop my need for the Naltrexone.
     
    Last edited: Apr 5, 2019
  7. Dechi

    Dechi Senior Member (Voting Rights)

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    Yes, I am dissolving 1x50 mg tablet in 50 ml of demineralized water (couldn’t find distilled) and thus getting 1,0mg / ml.

    I’ve heard other people say they quit because it wasn’t doing anything but then realized it was working when stopping. Glad it’s working for you too !
     
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  8. Dechi

    Dechi Senior Member (Voting Rights)

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    It took me 3 years to get it. I finally found an infectious disease specialist who agreed to prescribe it to me. Don’t give up. The best thing is it’s covered by medicare here and costing a big... 6$/month !
     
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  9. Alvin

    Alvin Senior Member (Voting Rights)

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    My new doctor gave me the prescription and i thought i was home free but the provincial drug coverage won't pay the $300/bottle cost :mad:
     
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  10. andypants

    andypants Senior Member (Voting Rights)

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    Could you order from an online pharmacy? And, have you checked prices for both 50mg and 3mg tablets? Its $50 in Norway, which is a bit on the expensive side but well worth it. I haven't actually considered ordering it online myself, but that could probably save me some money! Hello Google my old friend....:nerd:
     
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  11. rvallee

    rvallee Senior Member (Voting Rights)

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    It's probably because of how insurance coverage applies only with drugs that have been specifically approved for a specific condition. The insurance rebate only applies in my province for a pre-approved drug-condition combination. IIRC at the Montreal conference last year this was discussed, to get it approved for the condition so insurance plans would reduce the cost from full sticker price.
     
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  12. Dechi

    Dechi Senior Member (Voting Rights)

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    @Alvin I’m sure it doesn’t cost 300$ here because the provincial coverage only covers 70% or 80%. At 80% it would be 30$ if not covered. Maybe try phoning a pharmacy from Quebec ?

    I can ask my pharmacist if he’ll honor a prescription from Ontario if you want.
     
    Last edited: Apr 6, 2019
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  13. Alvin

    Alvin Senior Member (Voting Rights)

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    I am hesitant to buy from god knows who is making/selling drugs. I would prefer to buy from a reputable place which is hard to ensure online.

    Yeah its basically this. If it was not expensive it woudl not be a big deal but $300 a bottle is not affordable. Even if it worked i would never be able to buy a second bottle at that price.

    Please :)
    But i don't know how i would be able to get it, the gas to drive to QC and back would be a fraction of the $300 but i no longer have the fortitude to pull it off.
    That said i was hoping to try calling costco's pharmacy and a few others if i can get the cognitive functioning to do so.
     
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  14. Dechi

    Dechi Senior Member (Voting Rights)

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    Oh that’s true, you’re not close to Quebec. Maybe they can send it to you by Post Canada or send it to a specific Pharmacy near you ? Anyways, I’ll ask, just in case.

    Have you looked into online Pharmacies in Canada ?
     
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  15. Alvin

    Alvin Senior Member (Voting Rights)

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    Not really, I'll be in Ottawa next month but thats going to be very exhausting (Dr Hyde)

    Thanks. I would have trouble doing this for someone so if its going to be taxing you don't have to do it

    I am very hesitant to buy from an unlicensed source, who knows what they are really selling. It may sound paranoid but i don't want any surprises (or adulterants)
     
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  16. Binkie4

    Binkie4 Senior Member (Voting Rights)

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    I have started and been increasing slowly my LDN dose- too soon to judge efficacy.

    But in the last week, sleep has worsened. Anyone else noticed effect on sleep?
     
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  17. andypants

    andypants Senior Member (Voting Rights)

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    Very common during the first couple of weeks, but passes for nearly everyone after a while. Some people avoid taking it too late at nights because of this. Others get sleepy and avoid taking it in the morning. I have had none of these issues after the first couple of weeks and now take 3 mg in the morning and 3 mg at night.
     
  18. andypants

    andypants Senior Member (Voting Rights)

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    Surely there are physical pharmacy chains that also have an online presence? My local pharmacy can also fulfill prescriptions by post to anywhere in the country. Of course, Canada is slightly bigger...
     
  19. Dechi

    Dechi Senior Member (Voting Rights)

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    I just increased to 2 mg, so far so good. But it doesn’t seem to be working anymore at all at the moment, lol !

    It didn’t last. I have too much on my plate at the moment and it’s payback time...
     
  20. andypants

    andypants Senior Member (Voting Rights)

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    It’s not a cure:) because it masks pain it can also blind you to signals that you have overdone it. So be careful not to do more just because you feel better. You can still crash, and if the PEM is bad enough LDN will not be enough to escape it.
     
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