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New to LDN

Discussion in 'General ME/CFS Discussion' started by lizzywhizzy, Dec 11, 2014.

  1. lizzywhizzy

    lizzywhizzy

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    Not sure this is the right place to post but..
    Hi it's good to find Phoenix Rising.
    I started on 0.5 ml LDN 2 weeks ago. No good effects or bad effects ( i have M.E. and hypothyroidism)
    This morning as prescribed, i went up to one ml LDN and have felt dreadful all day.
    I take LDN a.m. As i have enough trouble sleeping without adding to the prob!
    Is it a coincidence,or have others experienced same or similar on " upping" their dose.
    Thanks for reading x
     
  2. ahmo

    ahmo Senior Member

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    Hi lizzy. I started LDN w/ match head-sized amounts, increasing by that amount dialy until I got to about .5 mg. My sleep was disturbed mildly at first, but not serious, and not for long. However, I did have some detox symptoms. I've been involved in a prolonged detox protocol for a year, so I had a strategy in place to deal with this. I think I got similar effects each time I increased. I'm just today about to go from 3.5 to 4 mg, and expect I might have some sort of reaction. I didn't actually feel bad, because I went straight into my coffee enema practice. If you want more info about this, there's a link in my signature.

    Here's a long thread, many of the comments are about die-off responses. Good luck to you. I'm quite certain now that 4 months into LDN my vastly increased stamina is due to the diminished levels of inflammatory response going on in my body.:):thumbsup:

    http://forums.phoenixrising.me/index.php?threads/low-dose-naltrexone.292/
     
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  3. Sushi

    Sushi Senior Member Albuquerque

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    The dosing schedule with LDN is not a science but seems to be quite individual. A doctor can only guess when you should raise the dose and how much. While most of us did get some side-effects each time we raised the dose, you can often minimize those by raising it in smaller increments. I take it at night and just used more sleep aids for a couple of days when raising the dose.

    For me, the side-effects lasted 5 days to a week each time and I would wait until I had felt stable for at least a week before raising the dose the next time.

    Best wishes with this!
    Sushi
     
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  4. lizzywhizzy

    lizzywhizzy

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    Hi and Thanks Ahmo for yr response and the links x very pleased to hear that your stamina has increased,that's really good news!
     
  5. lizzywhizzy

    lizzywhizzy

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    Hi Sushi,thanks for replying..Doc told me to go up once a fortnight by 0.5 ..i hadn't thought of going up by even smaller increments - thats good advice thanks!
     
  6. Sushi

    Sushi Senior Member Albuquerque

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    I found that I couldn't set a rigid schedule as it depended on how much and how long I reacted with every raise in dose. It took me about 4 months to get up to 4.5 mg. Since then I have lowered the dose to 3 mgs as I was getting sleepy during the day at 4.5.

    Sushi
     
  7. lizzywhizzy

    lizzywhizzy

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    Yes i' ll take that on board sushi and be careful. I thought dr's instructions to only make raises of 0.5 seemed very cautious..but LDN may be more powerful than i realised! Feeling better than yesterday but still pretty grotty :0(
    unsure if its LDN reaction or just the usual Ups n downs of ME...thanks for yr feedback
     
  8. lizzywhizzy

    lizzywhizzy

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    I' m taking LDN in the morning as i read that taking it at night causes insomnia ( which i have regular bouts of anyway) I also read that it doesnt make any difference if you take it morning or evening,but again have read that its more advantageous to take it at night. Any thoughts on this?
     
  9. Sushi

    Sushi Senior Member Albuquerque

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    Hi lizzywhizzy, if you quote someone or type @lizzywhizzy (their name) they will get an alert telling them that you have replied or wanted to draw their attention to your post. Otherwise, members may not see your reply.

    The reason to take it at night is that it blocks your opiod receptors for a few hours and this makes some people feel depressed. The insomnia from LDN usually goes away after a few days each time you raise the dose.

    Sushi
     
  10. lizzywhizzy

    lizzywhizzy

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    Sushi likes this.
  11. lizzywhizzy

    lizzywhizzy

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    Hi x i' m soon to finish my first prescription of LDN...have needed to progress quite slowly..I've gone from 0.3 to 3 mls in 16 weeks..taking advice from members here to go up in less than 0.5 increments as have had some bad reactions when ive increased,then it settles down and i increase again....don't know yet what the optimum dose for me will be.

    I rang to order my next prescription and was asked did i want to order 3,3.5or 4 mls in future.i felt confused ..
    My first bottles came as liquid with syringe to measure out my dose,and i was expecting same again...
    The girl i spoke to said a doctor wd ring to discuss but so far i havent spoken to him

    My question is - Does this mean the next prescription has to be for capsules of varying strengths? Or can you continue to order the syrup and measure out the dose needed as i have done so far? I' m not ready to settle on a specific dose as i' m still working my way up thru the doses,and don't yet know what the optimum dose for me is, or even if LDN is going to be of any or much benefit to me.

    Thanks for reading! X
     
  12. Sushi

    Sushi Senior Member Albuquerque

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    I think you mean mgs above?
    I don't see why you can't get liquid again as long as that is what your doctor orders. I greatly prefer liquid but now I make it myself by dissolving 50 mg tablets in 50 mls of distilled water. Doing it this way it only costs about $1 per month.

    Sushi
     
  13. lizzywhizzy

    lizzywhizzy

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    Hi @Sushi! ..thanks for fast response x
    For my last order, i was sent two bottles,both stating on the labels that they each contain 68 mls..not mgs.
    The previous bottles i had also stated mls.
    I' m puzzled as to why when i rang for my second prescription i was asked did i want to order 3/ 3.5 or 4 mls.

    I waited in for a day and a half for the doctor to ring me back..had to go out this afternoon and as always happens, he rang half an hour later! Left a message suggesting i "maybe take 3 mls one day,3.5 the next"..(
    Which didnt answer my question!.. And anyway my plan is to go up to three and a quarter and stabilise on it before trying three and a half..as going up by halves seems too much for me) so,i' m still perplexed as to why the young woman i spoke to asked me to state if i wanted 3, 3.5 or 4 mls. Why can't i order the same size bottles of syrup as with my first prescription and just measure out the doses as before.

    Does this make any sense? Or am i really being stupid here,not getting it? I order from Dicksons btw.

    Ps Your method of using the tablets in distilled water seems like a great economical way of doing it,will bear it in mind for when i get settled on the right dose for me ( if i can get the tablets that is)
     
  14. Sushi

    Sushi Senior Member Albuquerque

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    50 mg Naltrexone tablets are available in most all commercial pharmacies. They are very cheap. I still change my dose sometimes so I just measure out my dose with a syringe--1 ml = 1 mg the way I dilute them.
    Sushi
     
  15. lizzywhizzy

    lizzywhizzy

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    Thanks @Sushi x if i decide to use LDN longterm,i will go for that method,it sounds like the cheapest way,which is important if i'm possibly going to be on this for years.
    So far,sleeping longer (but lots of bad dreams) is the major benefit,as i usually have quite a lot of insomniacal nights!
    The biggest drawback so far is feeling absolutely poisoned for about six days each time i increase the dose slightly.

    I have come to the conclusion that what they must mean at the pharmacy is,i can order,for example 4.5 mls multiplied by 31 doses.i.e., one month's supply,which will be a bit dearer than if i want,say 3.5 mls x 31doses.
    I dont know why she was unable to explain this simply if its so!
    I need to ring again next week and hopefully get a more enlightening response!

    Thanks for listening,Sushi,hope you're doing ok and feeling much better for taking LDN x
     
  16. Folk

    Folk Senior Member

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    I wonder why most people don't go like?
    0,1 - 0,2 - 0,3 - 0,4 - 0,5 (...) ?

    Perhaps stop something like three or four days each ,5 increase.

    Wouldn't that be an idea?
     
  17. lizzywhizzy

    lizzywhizzy

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    Hi @Folk! Thats good advice for anyone like me who finds LDN quite potent stuff....
    I guess i havent done as you suggest purely coz i dont have a syringe that's marked so precisely.
    Going up in halves seems too fast,so i go up in quarters now,which seems ok( ish)
    Think i' ll see if i can find a syringe marked like you say x thanks for yr reply!
     
  18. lizzywhizzy

    lizzywhizzy

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    Hi everyone ..slowly worked up thru LDN doses for the last five months.
    Now on 4.5..find i have only a few nightmares now, and while i don't have more energy,i DO feel a little stronger and fall asleep more easily and for longer

    So...i will continue with LDN.. But not sure what dose to stick at..
    Do people stay on 4.5 if they tolerate it? Or go lower?Do some continue to buy it as a liquid,or is it important to change to capsules? ( Dicksons seem keen for me to change fr liquid to caps)
    can i ask if both liquid and caps are slow release and is it slow release that we need rather than fast?
    Thank you! x
     
  19. Sushi

    Sushi Senior Member Albuquerque

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    I vary my dose occasionally according to response. If I am sleepy in the day, I lower it. I now take 3 mgs. I find that 50 mg tablets are the cheapest way to take LDN. You get them at any pharmacy, insurance kicks in, you simply crush one and add 50 mls of distilled water and keep it in the fridge. 1 ml = 1 mg. Dose with a liquid medical syringe. Costs only pennies per month.

    You do NOT want slow release! You want to quickly close off the opiate receptors, and for only a short time, and then let them open up again and be amazed at all the endorphins you've made (your body thinking you were low on them). Then the receptors suck them up.:thumbsup:

    Sushi
     
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  20. lizzywhizzy

    lizzywhizzy

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    Thanks for yr fast response Sushi! And for clarifying the slow/ fast question!
    I HAVE found my mood has improved most days,due i guess to those endorphins :)
     

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